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Posted in Article about research into hallucinogenic drugs. on 29 May, 2015 - 9:31 am

This article discusses the issue of hallucinogenic drugs not being properly researched for their potential clinical benefits because of the illegal status of the drugs.

It makes brief mention of psilocybin and cluster headaches. I just thought it may be of interest to some on here.

http://www.iflscience.com/health-and-medicine/restrictions-psychede
lic-drugs-should-be-lowered


Posted in VERAPAMIL on 23 May, 2015 - 1:34 pm

I found verapamil very effective with significant reduction in frequency and severity of my headache at a relatively low dose. But unfortunately it adversely affected my liver. This was discovered accidentally when I had blood tests done for another reason. My liver function tests (LFTs) came back very high without any obvious cause. It turned out that it was due to the verapamil and this is a relatively uncommon side effect (about 1% of users). I had experienced no apparent side effects and wouldn't have know my liver was being damaged for quite some time if I had not had the blood test.

As a result of my experience I recommend that those starting verapamil for the first time have liver blood tests done about 4-6 weeks after starting. Statistically the risk is quite small but it was not zero in my case!


Posted in Aspirin for shadows on 23 May, 2015 - 1:21 pm

Hi Bruce,

I quite like using Dispirin Direct because no water is required and it dissolves very quickly in your mouth. I haven't seen any data comparing how quickly it is absorbed compared to other soluble forms of aspirin but I would suspect it would be pretty quick since the time for the tablet to dissolve in your mouth is probably only 30 secs or so and absorption should start pretty much straight away.

The other advantage of Dispirin Direct is that it is very easy to carry a couple of tablets in their foil in your pocket all the time just in case you need them in a hurry.


Posted in What to do when all else fails... on 23 May, 2015 - 1:05 pm

Very interesting. Fortunately CH is under control courtesy of gabapentin but should they resurface then I will keep this post in mind


Posted in Specialist recommendation? on 08 Jun, 2014 - 1:34 pm

Try to find out if any of your local hospitals have a Headache Clinic. Maybe one of the public hospitals in Canberra or Sydney may have such a clinic.

I see Dr Elspeth Hutton (as mentioned by Megan above) at the Alfred Hospital Headache Clinic. Costs me nothing for an appointment (not sure if she practices privately somewhere as well). She seems very well versed in CH and very thorough in her initial assessment of me. At present she has me on gabapentin which is working very well. She has also given me a variety of abortive treatment options. She always says that if I have any problems to ring up for an appointment and they will get me in asap as a CH sufferer.


Posted in New Member Info Needed on 11 May, 2014 - 9:15 pm

I hope that your herbal supplement is still working for you. If you have ongoing trouble there are basically two approaches to CH.
1. Preventative medication to prevent or reduce the frequency and severity of attacks
2. Abortive measures to help get rid of an attack as quickly as possible.

There is huge individual variation in what works for different people.

Preventative medications include:
- verapamil (usually the first choice to try)
- gabapentin
- topirimate
- lithium
- various others

Abortive measures include:
- oxygen (well researched and very effective in most people, no side effects)
- imigran (Usually as a nasal spray or injection, the tablets tend to be slow in taking effect)
- Maxalt (comes as a 'wafer' that dissolves in the mouth - convenient but can take 20 - 25 mins to work)
- energy drinks eg Red Bull, Mother (some people find benefit in slamming down a drink fast)

You will find more detail about the various options available on this website. In particular it is very important that oxygen is used correctly with an appropriate mask at a high flow rate or it is unlikely to work.

Many doctors have poor knowledge of CH so you may have to look around for one that has at least some basic knowledge. You should see a neurologist for further assessment (MRI, blood tests etc) and ongoing management. A formal diagnosis from a neurologist is very handy when dealing with GPs and a letter from your neuro detailing your recommended treatment can help persuade your GP to write you a prescription that will actually be beneficial (as opposed to the random garbage some GPs may give you that won't help much)

Personally I would be interested to hear what the herbal supplement is and I doubt others would object to you posting it here. Always keep in mind though that supplements can have side effects. A friend of mine has recently been having liver problems which have now resolved after her liver specialist advised her to stop taking a particular supplement that she had been using.


Posted in What a find..... on 04 Apr, 2014 - 1:34 pm

Welcome to the forum Paul.


Posted in relief from the evil one on 12 Mar, 2014 - 3:00 pm

You didn't mention oxygen. I am guessing you have tried it?


Posted in Thank you & Advice on Pain Management ?? on 12 Mar, 2014 - 2:48 pm

My neurologist put me on gabapentin (Neurontin) which i have found quite effective in reducing both the frequency and intensity of the arttacks. I get a few mild episodes (maybe 2 or 3/10 at worst) at times but since I started on the gabapentin about 9 months ago the worst I have had was an attack which i would rate as 5/10, so relatively mild in the CH scheme of things. So far I have had no side effects. Whether this medication would work for you though is unpredictable but certainly worth a try.


Posted in Adequacy of A&E response to CH on 12 Mar, 2014 - 6:56 am

Hi Tori,

you are right...most A&E staff know little if anything about CH and it's management. I would sugest getting a letter from your neurologist specifying the exact treatment that you are to be given if you attend A&E. The letter should also state that such treatment should be provided as a matter of urgency.

Keep several copies of the letter in case it goes missing and it may also be worth having a copy of it on your phone.

The other option would be for you to have Tramil and Stemetil available for use at home, even if that means learning to self inject.

Have you tried Imigran injections. A lot of CH sufferers use them to good effect but they are expensive.

Anoter thought is have you clearly established that the Mersyndol provides benefit? These type of medications are often not very effective in CH (although everyone is different and if it definitely works for you that is fine). Overuse of these type of analgesics can be problematic an that they can cause an increase in headaches.
http://en.wikipedia.org/wiki/Medication_overuse_headache


Posted in Sumatriptan 6mg auto injectable on 18 Dec, 2013 - 8:55 am

Hi Mandy,

I hope the verapamil is still providing you with benefit. I tried it a while ago and found it very effective even at a relatively low dose. I was very happy with it and seemingly had no side effects until I happened to have a blood test for another reason. The blood test showed that I had liver damage which is a rare side effect of verapamil (less than 1% of users). As a result of my experience I would recommend that people get a liver function blood test done after about a month of starting verapamil. I certainly don't want to alarm anyone that is using it because this side effect is uncommon, but it could do you significant harm and you have no symptoms until the liver damage is well advanced.

Since I unfortunately had to stop using verapamil I am now on gabapentin (Neurontin) as prescribed by my neuro. I have found it to be quite effective and it has significantly reduced the frequency and severity of my CH. I have been on it for probably around 4 - 6 months and in that time I have only had to use oxygen once. I still get occasional headaches but they are usually quite bearable.

Another option you could consider rather than the sumatriptan injections is Maxalt (rizatriptan) which is another of the migraine medications that can work in CH. Maxalt comes as a 'wafer' which dissolves quickly in your mouth. I find them very convenient to carry around and to use discreetly. It will not work as quickly as the injections but it is much cheaper. I generally get relief within around 20 mins or so. Of course individuals vary and some may find it doesn't work as well for them. Maxalt wafers come as two to a pack and costs $22 from Chemist Warehouse (so $11 per wafer). Also keep in mind that sumatriptan also comes as a nasal spray which is also cheaper than the injections, but won't be quite as quick to provide relief.


Posted in Subconscious Mind on 18 Dec, 2013 - 8:33 am

Kba78 said:
"
Last night, I was advised to look at my headaches from a different angle. Not as a medical condition, but as something that is triggered from an event in my life... ie- back to my first sign of an attack.. something i didn’t like then possibly and now my subconscious mind sees the same happening and brings on headaches to avoid situations..... Meaning i can hide from the world, prevent me from doing the task at hand.

Im interested to see what people say about this? I was originally annoyed at what i was told, like i was being accused of bringing them on myself, but I’ve slept on it... im wondering if this is at all possible."


Personally I would think that a notion that CH is potentially brought on by subconscious avoidance of 'situations' is very unlikely. There is simply no evidence to support such a concept and in this modern era of evidence based medicine we should not accept a concept for which there is no evidence. Speculation does not constitute evidence.

Of course we are faced with the problem that there is not a great deal of research on CH in general and add to that the fact that demonstrating a link between CH and some sort of psychological avoidance would be extremely difficult to do any way.

I don't deny that there is a 'mind-body' link. The placebo effect is a very good example of the influence of the mind over the body. However the placebo effect is well documented and can be demonstrated by proper scientific methodology. The evidence is strong and so we accept it. Vague and difficult to test concepts such as a link between CH and psychological avoidance do not to my way of thinking warrant anything more than passing consideration as I doubt anyone is likely to research it any time soon and I personally think it is very unlikely.


Posted in Trying to undestand PBS on 08 Aug, 2013 - 1:16 pm

Hi All,

my neuro has recently put me on gabapentin. I started on 300mg daily and increased by 300mg every 5 days until I reached my target dose of 1800mg (600mg three times per day).

The neuro gave me a script for the 300mg tablets which cost me around $35 for 100 capsules. Now that I am on a fairly high dose I got my GP to give me a script for the 600mg tablets thinking it would be more convenient (taking one tablet rather than two each time) and I presumed cheaper. To my surprise the 600mg tabs were hugely dearer - $83 for 100 tabs! (two boxes of the 300mg tabs would be the same amount of drug and only cost around $70)

I looked on the pharmacy website (I go to Chemist Warehouse) and it looks like the prescription from the neuro was covered by the PBS but the one from my GP was 'private'. Had the script for the 600mg tabs been 'PBS' they would have only cost about $1 more than the 300mg tabs.

This webpage shows the price breakdown between private and PBS:
http://www.chemistwarehouse.com.au/product.asp?id=52897&pname=Neuro
ntin+600mg+Tablets+100+%28A%29


Can anyone shed light on why one script I was given was covered by PBS and the other one not? My neuro said something about saying that the medication was for 'migraine' rather than CH if the pharmacist should happen to ask. Is that a clue?

Can anyone help me understand what is going on here?


Posted in Ambulance cover on 24 Apr, 2013 - 1:52 pm

WARNING: private insurance may not provide adequate ambulance cover!!!!

The following info relates to Victoria, there may be some state to state variation.

Many people are getting hit with hefty ambulance bills because tey thought their private insurance covered them fully. Most insurance policies will have the fine print that they don't tell you about unless you specifically ask.

One of the commonest clauses is that you are covered for "emergencies" but not non-urgent transport. How they define an emergency may differ from one insurer to another. An ambulance may come to you with lights and sirens and take you to hospital but that doesn't mean that you meet the criteria of what your insurer defines as an emergency.

A few questions you should ask:
- how do you define an emergency (push for plenty of detail)
- am I covered Australia wide
- am I covered for helicopter transport
- is there a limit to how many ambulance trips I can make in a year

The safest option is to have an ambulance subscription which will fully cover you for every form of ambulance transport. Be very wary of relying on private insurance - it could cost you dearly!


Posted in Verapamil hydrochloride on 18 Apr, 2013 - 10:46 pm

Thanks for you comments and concern Ben.

The hospital pharmacist took down some information for an adverse drug reaction report. Unfortunately I didn't ask more about the purpose of this. I am not sure if it is a document for the hospitals own records of whether it is sent to the TGA as an official report (I suspect the latter)


Posted in Verapamil hydrochloride on 18 Apr, 2013 - 4:59 pm

Haven't visited this forum for a little while and just dropped in to make a post relating to verapamil when I found this topic and figure I may as well tell my story here rather than start a new thread. Let me say first up I don't want to unduly worry the original poster. Verapamil may be perfect for you and have no adverse effects so I would not for a minute suggest you don't try it. Anyway here is a cut and paste from a post I just made over on clusterheadaches.com
.....................................................................................

Obviously a lot of people on this forum would be using verapamil as a preventer for their CH. I don't want to unduly alarm people but I think it is worth telling my story as it may be worth having your liver function tested.

I have CH that I would describe as relatively mild compared to many sufferers, and it first came on about 18 months ago. At first I was happy to just use abortive measures such as oxygen and Maxalt. However a few months ago I was getting rather sick of it and went to my doctor to get some verapamil to try.

I started on a low dose of just 2 x 80mg daily and got some benefit after about a week. However a few weeks later I started getting some occasional moderate hits so increased the dose to 3 x 80mg (as my doctor had suggested).

I was pretty pleased that at a fairly low dose (in terms of CH) I was getting much decreased intensity and frequency and seemingly no side effects. I was really happy how it was going.

About a week ago I had an episode of chest pain. It persisted for a couple of hours and I decided I had better get myself checked out, so off to hospital. The hospital ran some routine blood tests, fortunately including liver function. In doing so they discovered that I had greatly elevated levels of liver enzymes, indicating liver damage. There was no imediate obvious cause for this since I am not a heavy drinker. It also happened that I had blood tests done only a couple of months ago (before verapamil) and my liver function was fine then. I started on the verapamil approx 6 - 8 weeks ago. So this had happened in a relatively short time frame.

There seems to be no other explanation other than that this damage was caused by verapamil. A liver ultrasound showed no structural abnormality in terms of obstruction etc. Liver damage is a known side effect of verapamil. One reference I looked at said it occurred in around 1% of cases.

As an example one of my liver enzymes known as GGT was 1,564 whereas the normal range is said to be less than 62!!

Needless to say I came straight off the verapamil. Since the liver has great powers of regeneration it should repair itself. There was a slight improvement in the blood tests done a few days later, but I will get retested in a week or two. The hospital will arrange for me to be seen as an outpatient some time in the next few weeks to check my progress.

One of the main points of this story is that I had no idea this was happening. There were no side effects of any sort. I felt completely well. The hospital pharmacist said that had I continued on the drug two thirds of my liver would have been destroyed before I got any symptoms at all. I am almost thankful that I got the chest pain and went to hospital otherwise I would have been blissfully unaware of this problem until it got very nasty!

Clearly the majority of people taking verapamil won't have this problem, so don't get unduly alarmed. However in light of my experience my recommendation would be to get a liver function test done approx 1 month after starting on verapamil for the first time. I guess if you have been on it for years without any problem then you are probably not susceptible to this effect (but I guess it wouldn't hurt to get a blood test anyway for peace of mind).

By the way, the tests I had done on my heart showed that it was in good shape so I didn't have a heart attack and I don't have coronary artery disease. The hospital are also going to arrange a consultation with a neurologist in their headache clinic to review my CH and discuss alternative options since I can't take verapamil.

It also has me interested that one drug reference I checked lists side effects of: chest pain, angina and heart attack. Leaves me wondering if the verapamil may be implicated in the chest pain I got.


Posted in Does this annoy you as much as me? on 21 Dec, 2012 - 8:07 am

I threw in a comment as well.


Posted in oxygen availability on 14 Nov, 2012 - 6:48 pm

Kim said:
"hi all,
really confused about oxygen availability here in perth.

a couple of years ago my gp (now retired) rang boc medical (while i was in his office)
to try and arrange home oxygen for me. after 20 minutes on the phone they told him there is no way home oxygen could be supplied.

have seen on here and have been told by others that you can get home oxygen.

neurologist tells me, might be able to arrange oxygen at 4lpm. up to 8lpm with a concentrator.

as you all know it needs to be 15lpm.

today i rang boc medical, initially, they told me 10lpm was the maximum flow rate and that if you require more than that you should be in hospital.
when i pressed them, they checked and said they could provide 15lpm but with there largest cylinder it would only last for 8 minutes.

prevenatives have not worked for last few cycles, so have been using lots of abortives,
clearly oxygen would be less damaging to my body.

would appreciate any current and accurate info / advice on oxygen availability in perth.

kim"


Kim, give some consideration to buying your own regulator. Provided you buy one with a high flow rate (say up to 25 lpm) you can just choose to use whatever flow rate you like. Your doctor and the O2 supply company cannot control what you use when you have your own regulator. If you can afford it get a demand valve and you will have the perfect delivery device.

As for how long the cylinder will last this is an easy calculation (as in my post above). As an example, suppose you take 20 min to abort an attack and use a flow rate of 15 lpm:

Assuming usage of 15 lpm for 20 min
15 lpm x 20 min = 300 litres used

If you have a D cylinder (1500 litres) then just divide 1500 by the 300 litres used per abort
ie 1500/300 = 5 aborts per cylinder

If you have an E cylinder (4200 litres) then you have:
4200/300 = 14 aborts per cylinder

Of course you may use higher or lower flow rates, or take shorter or longer times per abort than in my example so there will be some variation. Also keep in mind that calculations of such things may vary a bit from what happens in the 'real world', but you can at least get a rough idea. In any case you can see that the figure of 8 min for a 'large' cylinder is garbage (unless they only have very small cylinders!)

Of course if you go to a gas company and say you want O2 for welding you can probably get whatever amount you want at cheaper cost than medical O2. Someone else would have to advise you what sort of regulator to get for a welding supply since I have never gone that route.

My choice to avoid any hassles with doctors or gas companies is to use my scuba gear along with the fact that I have a scuba certification to use 100% O2. This wouldn't be an option for most people though.


Posted in IV Lidocaine on 14 Nov, 2012 - 7:31 am

Ben said:
"Good news Heather.
Are Lignocaine and Lidocaine the same drug?
Cheers, Ben."


Yes. Lignocaine and lidocaine are just different names for exactly the same drug. Lidocaine is American terminology, and traditionally we have used the term Lignocaine here in Australia (although I get the impression there may be move to adopt lidocaine internationally).

As if drug names aren't confusing enough without different countries having different names. America has different names for a number of drugs. One of the best know is adrenaline, which they call epinephrine. Some others are salbutalol (albuterol in America), pethidine (meperidine in America) and paracetamol (acetaminophen in America).


Posted in New female member from Melbourne on 30 Oct, 2012 - 4:56 pm

Hi Tash,

welcome to the forum. You are right not to assume too much until the diagnosis is confirmed.

With CH most people find that narcotic pain relievers (eg Endone, panadeine forte, morphine etc) are ineffective. I have tried them with no benefit at all. I do find high does aspirin beneficial in mild CH (say up to about 4/10) but no help for sever headaches.

Oxygen is the best abortive treatment for most people (approx 78% find it beneficial). It has the benefit of no side effects and can be used repeatedly without any health concerns.

Immigran is beneficial for many. I find Maxalt wafers (a related drug to Immigran) effective and convenient - you just put it in your mouth and it disolves straight away, no water required. It is also discrete to use if you are in public.

In order to work out what works for you it is important to take only one form of treatment at a time in the early stages. If fr example you take Immigran and panadeine forte and the pain goes away you are left not knowing which drug provided the benefit. It can be hard to hold back from 'hitting it with everything you have got' but to avoid taking uneccesary medications you need to sort out what works and what doesn't. That is not to exclude that some drugs may work for you in combination, but you need to work your way through various individual drugs and then try combinations.

Also, you could try some red bull or similar (larger cans for best effct) since some find the caffeine combined with taurine in energy drinks is beneficial.


Posted in Botox on 28 Sep, 2012 - 3:53 pm

Sorry to hear that it hasn't helped. At least you have tried it and can cross it off your list of options.

Does the 'face ;ift' look good though? icon


Posted in Botox on 26 Sep, 2012 - 7:08 am

How is it going Gini?


Posted in Catching up on 25 Sep, 2012 - 2:07 pm

Thanks for sharing that info with us.

Maybe you could ask him next time if there is any research into psychedlics and could he ever seen them being legalised if a trial proved them to be effective. Just a suggestion.


Posted in Alternative Medicine article on 18 Sep, 2012 - 1:17 pm

Just thought this article may be of interest.
http://the-scientist.com/2012/07/01/alternative-medicines/

It doesn't have anything specific to CH, but looks at things like acupuncture, herbal hazards, etc. It does include a section on psychedlics which may be of interest to some (again not related to CH though)


Posted in Anyone tried Capsaicin nasal spray? on 08 Sep, 2012 - 2:41 pm

Hi Katherine and others,

I have no problem with people trying anything available that may have even a remote chance of benefitting this awful condition, but sometimes caution is appropriate.

My understanding is that homeopathy has never been shown to have any benefit at all beyond what would be expected as a placebo effect. The homeopathic belief is that the more dilute something is the more potent it is (rings alarm bells straight away) and therefore a 'powerful' homeopathic remedy is in effect so dilute that it can only be regarded as almost pure water.

I certainly wouldn't want to dissuade someone from anything that they find effective, so anyone who has found benefit from homeopathy keep it up and don't read any of the links below.

http://www.quackwatch.com/01QuackeryRelatedTopics/homeo.html

http://www.randi.org/site/index.php/jref-news/1208-feb5video.html[/
L]


http://www.everydayhealth.com/blog/zimney-health-and-medical-news-y
ou-can-use/homeopathy-is-a-scam/


A google search will find you dozens of articles and videos denouncing homeopathy.


Posted in Anyone tried Capsaicin nasal spray? on 08 Sep, 2012 - 12:15 pm

I just had a quick look for Sinol and the website I looked at referred to it as a 'homeopathic' remedy. If this is correct then like other homeopathic remedies it would be highly diluted to the point where it is virtually just water. If the 'homeopathic' description is correc then I would prefer to buy an alternative product which actually contained a reasonable proportion of the active ingredients (maybe Rinar would fit the bill?) Another website however refers to an initial burning sensation when sprayed in the nose - this would imply that it has a concentration higher than usual homeopathic dilutions. I guess I need to do a bit more research and see if I can make a comparison as to the actual amounts of the active ingredient in these products.

Here is the webpage I looked at:
http://www.vitamingrocer.com.au/Sinol-M-Nasal-Spray-with-MucoAd-p/1
29725.htm

See under the heading "All Natural Ingredients" for the homeopathic reference.


Posted in Questions; on 21 Aug, 2012 - 4:14 pm

Unlike gunolf I have found benefit from:
Imigran tablets
Imigran nasal spray
Maxalt wafers
Although each of these is somewhat slow to work (up to 30 min)

Best option for me for strong attacks is oxygen (relief in 10 - 15 min and no side effects)

Mild attacks:
Energy drinks (Mother, Monster, Wicked, Red Bull, "V" etc)
Aspirin - soluble (2 x 300 mg if very mild, 3 x 300mg if a bit stronger)

However I am relatively new to this (about 10 months) so I am still learning what works best. From the experience of others there would seem to be wide variability in what works best for individuals. Oxygen seems to be the most reliable abortive reatment available at present, see article below:

http://latimesblogs.latimes.com/booster_shots/2009/12/cluster-heada
che-oxygen.html

"When asked to rate their pain relief, 78% of patients said they felt fine within 15 minutes of breathing high-flow pure oxygen. By contrast, only 20% of patients had the same response after being treated with high-flow regular air. Oxygen continued to outperform air at 30 and 60 minutes after the onset of the attack, according to the study. The researchers didn’t report any serious adverse effects."


Posted in The Treatment Roundabout on 21 Aug, 2012 - 3:56 pm

Nice compilation and I liked the music. icon


Posted in Purchasing regulators on 21 Aug, 2012 - 3:35 pm

I live quite close to Supagas in Cheltenham and it would be my first port of call if I were to need gas or equipment. The only reason I haven't gone that route is that as a scuba diver I can just get oxygen fills from my local dive shop without any hassles of needing a letter from my doctor.

I would be interested to know what sort of regulators Supagas have in stock and approx prices if anyone happens to be discussing this with them.

My suggestion of purchasing medical oxygen regulators from a scuba organisation ( "DAN" as I mentioned above) is because divers and CHers have similar needs. Oxygen first aid for divers requires as close to 100% as possible, and this is what CH sufferers also need. Other medical applications of oxygen therapy can be quite dissimilar to the needs of divers and CH, hence the possibility that some medical gas suppliers may not understand understand where we are coming from (obviously not the case at Supagas in Cheltenham though).


Posted in The CH brain on 18 Aug, 2012 - 3:31 pm

On a different note Ben I have a question for you why do nitrates effect us so badly, I think if we can work out why. This could lead to something.
"


Nitrates are very potent vasodilators. I would presume that to be a significant component of why it can bring on a CH. I have seen people drop their systolic blood pressure by as much as 80 - 100 points following a half anginine tablet (although that sort of extreme reaction would not be typical for the average person).


Posted in South Australia on 18 Aug, 2012 - 3:22 pm

Oxygen is well worth a try. Over 70% find benefit with it according to a placebo controlled study.


Posted in Purchasing regulators on 18 Aug, 2012 - 1:13 pm

DAN Asia Pacific is a scuba safety organisation that supplies oxygen equipment I have no idea how their prices compare with other suppliers.

This would be my choice in a regulator since it has a demand valve and supply 100% O2 with every breath and no O2 wastage. However it will be more expensive than a fixed flow regulator (ie non-demand) - I think it is around the $500 sort of range. http://www.danasiapacific.org/main/proddetail.php?prod=ECON

A basic regulator like this would be cheaper since it doesn't have a demand valve: http://www.danasiapacific.org/main/proddetail.php?prod=BASICUNIT_S[
/L]
(However you probably wouldn't ned the resuscitaion mask that comes with it, and maybe not the cover designed for a C cylinder (but could be handy to have when out and about).
They are a very reputable organization. However compare prices with suppliers like BOC or Supagas etc.


Posted in New here - DHE problem on 07 Aug, 2012 - 10:14 pm

Hi Jan,

I can't 100% rule out DHE from NZ but it sounds unlikely. Here is the reply I received so you can judge for yourself:

"Hi David

I've no direct experience of DHE in NZ.

I did try Google, which only gave me links to sites overseas to get it.

The NZ gov't site http://www.medsafe.govt.nz/profs/Datasheet/dsform.asp also doesn't have anything for DHE other than it being listed on datasheets for other drugs, mainly in the contraindications sections.

Sorry I couldn't find anything.

Regards

Mike "


Posted in New here - DHE problem on 07 Aug, 2012 - 9:20 pm

I contacted a guy in New Zealand who has CH to see if he had any knowledge of DHE over there. He has no personal knowledge of it and his attempts to google search for it in NZ didn't turn up anything of use.

(I had a crazy idea that if DHE was available in New Zealand it may be easier to get it to Australia than from some other countries - heck you could fly there for under $400 return and bring back a sackful. Anyway, seems they don't have it over there so my crazy idea was fruitless! icon )

Hope you manage to track down a supplier!


Posted in Not good news but getting better on 27 Jul, 2012 - 7:50 pm

Sorry to hear your most unfortunate news. I wish you all the best and I am sure the doctors will do everything they can.


Posted in Sumatriptan 100mg on 27 Jul, 2012 - 6:56 pm

In Australia there are regulations to ensure that generic brands are equivalent to any other brand so usually the medications are quite interchangeable without any problems.
"The Australian Government has regulations to assure the quality, safety and efficacy of generic medicines. These include compliance with good manufacturing practice and the requirement that generic products must have demonstrated bioequivalence with the innovator brand, or the Australian market leader, before they can be listed on the PBS."
http://www.australianprescriber.com/magazine/27/4/80/1/
I guess it is possible though that a particular manufacturer may make a version of a drug that has faster absorption characteristics than other brands.

Yes, that is me in the profile picture. I have been diving for over 35 years now. CH and diving however is a bit of an unkown for me as I have had CH less than 12 months. There is varied opinion on diving with migraine, and probably very little medical opinion on diving with CH (given how little is known about it in general). I have been fortunate in that I have not had a Ch episode while diving. I have had a couple of occasions where I have had mild shadows before a dive so have taken precautionary aspirin just before hand. This has been for quite shallow easy dives, I would have reservations about doing any deep or adventurous dives when in cycle. In fact if I was at the high point of a cycle I think I would put all diving on hold.

Medical objections to diving with migraine seem to be largely due to the accompanying symptoms that some people get with migraine. For example, paralysis, numbness, visual disturbances, vomiting etc. Obviously these would not be good while diving, and if these symptoms occurred during or after diving it may be very difficult to determine whether it was due to migraine or due to the bends. Since CH doesn't usually have these sort of symptoms the main risk would be the severe pain and possibility of a too rapid ascent if panicking.

Another consideration would be the possibility of preventative medications being contraindicated for divers. Some medications are not suitable for divers so it would seem sensible to seek medical advice if from a diving doctor if you are taking preventative medications.

Here are some articles about diving and migraine:
http://www.scuba-doc.com/mgrns.htm
http://www.diversalertnetwork.org/medical/articles/CNS_Consideratio
ns_in_Scuba_Diving

http://londondivingchamber.co.uk/index.php?id=advice&page=6&cat=4&s
ub_cat=72


And a discussion relating to CH and diving:
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=125069031
6


And this article may be of interest for those using energy drinks containing caffeine
http://www.divetheblue.net/pdf/152DiveMedic.pdf


Posted in Sumatriptan 100mg on 25 Jul, 2012 - 10:58 am

As Heather said sumatriptan is generally available as 50 mg tablets under a variety of brand names (one of which is Imigran). This webpage lists the trade names of the available brands:
http://www.nps.org.au/health_professionals/publications/nps_radar/2
012/march_2012/brief_item_sumatriptan


If you need 200mg I think you are going to have to buy the 50mg tablets and take 4 of them. Seems like a very large dose. Other options are the injections or the nasal spray version.

I am presuming you have tried oxygen? Gives quick relief to the majority of Ch sufferers and has no side effects.


Posted in Survey of effectivness of online support groups for headache disorder sufferers. on 22 Jul, 2012 - 11:40 pm

Completed the survey. Hope some useful data is gained.


Posted in calm cluster headaches with KUDZU on 17 Jul, 2012 - 8:33 am

Thanks for bring that to our attention - I hadn't come across it before.

A google search brings up a number of sources for the article you have quoted. I also found a somewhat more detailed article here:
http://www.reuters.com/article/2009/02/02/us-cluster-headache-kudzu
-idUSTRE51162Y20090202


I also found on another site that Dr Andrew Sewell apparently has an interest in psilocybin as well.
http://www.headaches.org/press/NHF_Press_Kits/Press_Kits_-_About_th
e_NHF


It would be great if "Kadzu" does provide some benefit to CH sufferers, even if it only benefitted some. I am quite happy to have an open mind pending further research. However alarm bells tend to ring for me when any substance is claimed to be of benefit in a wide range of problems, such as: "It may also help with ailments such as diarrhea,high blood pressure,angina pectoris,intestinal obstruction,stomach flu,menopausal symptoms and high cholesterol" Starts to make think of snake oil. Fingers crossed though that it proves to be useful!


Posted in CH back again after about 2 years free on 04 Jul, 2012 - 11:18 am

My doctor recommend taking three aspirin (ie 900mg) and there is research that this is effective in migraine. I certainly find it beneficial for mild headaches (say up to about 3 or 4 out of ten), but doesn't help for the severe ones. (I don't think the benefit of aspirin in headache has anything to do with its 'blood thining' property, but rather it's analgesic effect).

I also recommend trying oxygen. In fact I just got off the oxygen about 30 min ago after having a 7/10 headache that failed to respond to aspirin. Got relief from the oxygen after about 10 - 12 mins. On the plus side oxygen is quick to act and has no side effects, and you can use it as often as you like.

I find benefit from the 'triptan' medications such as imigran or Maxalt (wafers), however relief takes around 25 - 30 mins. I haven't tried the injections that act more quickly. Medications such as these are handy if you are away from home and don't have access to oxygen. The Maxalt wafers are handy since you don't need water to take them and they can be taken quite 'discretely'.

There are also a range of preventitive medications. Verapamil seems very popular. Prednisolone also has benefit. Then there are large range of other preventitive drugs if need be.


Posted in Tax time - what medical expenses do you claim on 04 Jul, 2012 - 10:45 am

I have rarely put in a tax claim for medical expenses because in most years I would not reach the approx $2000 threshold required. However over the last couple of years we have had a number of expenses between myself and my immediate family that put us over the limit (CPAP machine, sugery, orthodontics etc).
See the ATO website for details:
http://www.ato.gov.au/content/00313907.htm

So I am figuring that expenses relating to CH would be claimable. Obviously visits to doctors/specialists and the cost of prescribed medications would count.

I am guessing that the cost of oxygen administration would also count? I guess things such as the purchase of equipment (regulators, masks etc), oxygen refill costs, hire and delivery charges etc would be claimable?

One thing I am less sure about is the cost of non-prescription medications. For example I use a fair bit of aspirin for shadows, as recommended by my doctor, so does that make it claimable? (I must admit it is pretty cheap anyway so no big deal if it isn't claimable)
The ATO says theitems below aren't claimable:
- chemist-type items, such as tablets for pain relief, purchased in retail outlets or health food stores
- purchases from a chemist that are not related to an illness or operation

When they say 'purchased in retail outlets" are they including chemists?
Also the fact that they say you can't claim "purchases from a chemist that are not related to an illness or operation" would make me think that purchases from a chemist that ARE related to an illness are claimable? So if I purchase pain killers from a chemist that relate to a specific illness (and which my doctor has recommended) does that count as a claim?

Would be interested in what others claim.


Posted in Harry Potter gets CH on 01 Jul, 2012 - 6:19 pm

breakingpoint said:
"
The first 5 minutes he spent providing me with lip service and was taking no notice of what I was saying and his only idea was to offer me a script for panadienne forte.


I had a similar experience recently when my GP was away. I went to an alternative doctor at the same practice (ie all my records were available) to get a script for immigran. The doctor then proceeded to write me a script for endone which I had just told him I had tried and was useless.


Posted in Harry Potter gets CH on 29 Jun, 2012 - 11:45 pm

And there was thinking that when Harry clutched his head in the movies it was caused by Voldemort's close proximity.


Posted in This worked for me!Hope it does for you too! on 29 Jun, 2012 - 11:40 pm

As has already been pointed out it is important to wean of the prednisolone as directed. Prednisolone suppreses the bodies natural production of cortisone. The idea of slowly tapering off it is to allow the body to increase its production of cortisone again


Posted in bottled oxygen vs oxygen machine. on 19 Jun, 2012 - 8:29 pm

As Peter dsaid an oxygen machine (oxygen concetrator) is unsuitable for use in cluster headache as it only produces low flow rate oxygen, therefore the oxygen concentration you recieve is inadequate. You will need bottled oxygen, with either a demand regulator or a regulator capable of min 15 lpm, or preferrably up 25 lpm.


Posted in oxygen therapy - purchasing on 25 May, 2012 - 11:00 pm

As others have pointed out rental is the main option for cylinders. I do know of a scuba club that have purchased their own C cylinders (and have a means of getting them refilled), but a C is pretty small and I am not sure if the mob they got them through have larger cylinders that can be bought.
I am not 100% sure but I think they may have got them through Allwoods Breathing Services: http://www.yellowpages.com.au/vic/mooroolbark/allwoods-breathing-se
rvices-12222625-listing.html
It may be worth ringing them and asking if they sell cylinders. You would probably need to also get fills through them since I doubt places like BOC or Supagas will fill cylinders other than their own.

As for a regulator you can certainly buy one of these for yourself but like all medical equipment they are not cheap in this country. Give consideration to getting a demand valve since it supplies 100% O2 for every breath with no wastage of gas. Alternatively you want a regulator with a high flow capacity of up to 25 lpm to use in conjunction with a non-rebreather mask (or Optimask).

I am sure others on here can give you names of suppliers that sell regulators. Being a scuba diver I tend to look at what is available through an organisation called Divers Alert Network (DAN) since the regulators that they supply need to meet a divers need for high percentage O2 when they have the bends. There are similar needs between divers with the bends and CH (ie high percentage O2). I don't know how their prices compare to other options, and since their gear is often provided with the diver in mind their kits may contain items that you don't need. Have a look at the DAN products here: http://www.danasiapacific.org/main/products.php?cat=18

Alternatively just do a google search and you will find numerous companies that supply regulators. Be careful to make sure that what you get is suitable for your needs, maybe check on here before purchasing if you have any doubts. Here is a sample google search: https://www.google.com.au/search?q=medical+oxygen+regulators&ie=utf
-8&oe=utf-8&aq=t&rls=org.mozilla:en-GB:official&client=firefox-a


Posted in Hello to all on 13 May, 2012 - 11:24 pm

Great to hear you have had a good day, fingers crossed it continues for you.

Also glad to note that you are being realistic and acknowledge you could have just had a lucky day. It's horrible to have the rug pulled out from under you when you think you are on to something, and it turns out to be less successful that you hoped.

Keep us informed about how the next few days go, and if it works out I would be interested to hear a bit more detail of the foods you are avoiding.


Posted in Hello to all on 13 May, 2012 - 7:59 am

Hi Paul and welcome to the forum.

Pauly-7E5C16DB9B said:
" the imigrain works but still took about a 20 minutes to work I think so I run around like a chook with his head cut off till then.


I had to smile when I read the bit about the chook with its head cut off! I am sure people would think I was a bit crazy when I have a bad hit. I pace around the house, often doing circles around the lounge room. The more painful the hit the faster I go - at a 9/10 I reckon I am just about creating a whirlwind as I rush around in circles.

As others have mentioned it is well worth considering oxygen as many people find it the best and fastest relief around. A scientific trial found 78% of people got good benefit from it. There is plenty of info on this site and others if you decide to give it a go. Many report relief within about 10 - 15 mins give or take a bit, provided the flow rate is adequate to give you high percentage O2. The plus side is that there are no side effects and you are not continually filling your body with various drugs.

For mild hits, say in the 3 to 4/10 range I am finding 900 mg (3 tabs) of Aspro clear to be effective.


Posted in Imigran on 11 May, 2012 - 8:57 pm

Thanks Ktulu...some interesting info there for me to follow up. icon


Posted in Imigran on 10 May, 2012 - 6:31 pm

Hi Katherine,

thanks for the feedback on the governent authority. I have come across this before with some medications but I am quite new to the issue of CH and the drugs used to treat it. It seems that prescriptions generally only provide a smallish quantity of drugs like the triptans which would be quite a nuisance for those who have frequent attacks.

Next time I see a doctor I will try to get further info on what quantities can be readily prescribed and what requires authorization. So far I have been fortunate that I haven't had that many really severe headaches, and most of those have responded well to oxygen thereby minimising my need to use prescription drugs.

I have a lot to learn...but wish I wasn't in the position of having to do so!

Dave.


Posted in Imigran on 10 May, 2012 - 8:46 am

Andoburns said:
"I use the maxalt wafers also. Blue devil where do you get yours from? I pack of 4 cost me over $35 and my GP advised the maximum i can take is 3 a day so if I am getting several attacks a day, I can only use them for some of the headaches.


So far I have only used a sample given to me by the GP. However the prices I quoted above are from the Chemist Warehouse website. Fortunately there is a Chemist Warehouse only 5 mins from where I live. For those who don't have one handy you can order prescription medications from their website (you sent the script to them).
http://www.chemistwarehouse.com.au/searchresults.asp?searchsection=
products&terms=maxalt&stype=NP&expand=0&sic=0


However it seems you may need the doctor to get a government authority to purchase this 'double pack' as per this page:
http://www.chemistwarehouse.com.au/product.asp?id=63966&pname=Maxal
t+10mg+Wafer+4+%282+x+2%29


Anyone hear use Maxalt regularly and know anything about this government authority business?


Posted in Imigran on 09 May, 2012 - 10:15 am

It seems the 100 mg tablets are particularly expensive.. Have a look at the Chemist Warehouse page:
http://www.chemistwarehouse.com.au/searchresults.asp?id=&page=1&ter
ms=imigran


If my maths are correct it works out at around $5.60 per 50 mg tab compared with $15 per 100 mg tab. You would be better off taking two 50 mg than one 100mg.

The nasal sprays are $8 per spray, so dearer than 50 mg tabs, but cheaper than 100mg tabs.
(Larger quatities are a little cheaper).

Another option to consider for travelling are Maxalt wafers. These are convenient because you don't need any water. I was sitting in a large convention recently and didn't want to get up from my seat, pushing past a heap of other people to get out and get some water to take a tablet with. Fortunately I was prepared and had a wafer with me. it took about 20 min before I noticed any benefit and around 30 mins for full relief. This was okay since it was about KIP 7, so bearable until the drug kicked in. They come in plastic container than can be stored in your pocket, or bag etc. (So far i have only used them this once so not yet sure how effective they are in the log term)

Maxalt wafers work out to around $5.50 each.


Posted in A Cure for Cluster headaches!!! on 07 May, 2012 - 5:12 pm


I've not tried shrooms in relation to CH, but I would like to legally be able to, should I so choose.
cheers peter."


My CH seems quite mild in comparison to what I read of other people's condition. I have wondered though what i would do if I was experiencing CH at its worst. Shrooms would definitely have to be considered in that circumstance. The fact they are illegal would be very off putting for me, and concerns about making an error with the species or amount etc would worry the hell out of me!

Let's hope that some decent research gets done, and that assuming the result is positive that the government could be persuaded to make it legally available to CH sufferers. I can't see anything happening in the near future though.


Posted in Aspirin for shadows on 06 May, 2012 - 5:02 pm


Please, may I caution you to WRITE DOWN, what you're taking and the times you take it, because although most of us could and would do anything to stop the pain, it's easy to forget just how much you have taken, and it's really easy to do damage somewhere else in your system by accident.


That's good advice Peter. Not only from the point of view of making sure you don't take too much of something at the time, but also keeping a record of what works and what doesn't and how long it takes to be effective.

I started keeping track of my headaches on a Word file on my computer, then also tried a small notebook. But recently found a phone app that allows you to record all the details of you headache, such as onset time, offset time, severity, symptoms, medications etc. You can customize it with lists of your own symptoms, triggers, medications etc. It also gives you various graphs such as time of day, symptoms, etc. It will even generate reports that you can email to yourself or others.

There are various apps available but the one I am using for my Android phone is called "My Headache Log", and it is FREE!


Posted in Aspirin for shadows on 06 May, 2012 - 10:08 am

Had shadows for much of the day yesterday. No benefit from Red Bull, but the aspirin helped. When they came back last night I decided to try some Advil (ibuprofen). Unfortunately it didn't seem to help at all. Around bed time they got stronger and I felt I couldn't take aspirin since I had already had the Advil. So I waited 4 hours from when I took the Advil and then took some aspirin which helped and I eventually got to sleep.

If it had got any stronger I could have gone for some O2 or imigran, but try to reserve that for the really strong ones.


Posted in Aspirin for shadows on 04 May, 2012 - 1:02 pm

Sounds really nasty Anie. Are you using oxygen? Sounds like you need something really effective to abort the attacks so you don't go through 2 hours of hell.


Posted in Aspirin for shadows on 04 May, 2012 - 11:27 am

That's interesting...I wasn't aware of the extra strength Aspro Clear so will look for that next time I am buying some.

As it happens I have just come back from the chemist and bought a box of 60 Aspro Clear (regular) for $7 (Chemist Warehouse). That's pretty reasonable I reckon, only around 11 cents per tablet, so about 33 cents if you take 3 of them.


Posted in Aspirin for shadows on 03 May, 2012 - 6:29 pm

Thanks Donna and Anie for the tip on aspalgin.

As for the doctor saying three aspalgin was too much that seems a little strange. My understanding is that aspalgin contains 300 mg aspirin and 8 mg codeine. As such 3 aspalgin would be the same dose of aspirin as taking 3 aspirin tablets. The codeine would then be 3 x 8mg ie 24mg. That is less than the codeine in 1 x Panadeine forte (30mg), and keep in mind that you can take 2 x Panadeine forte (total 60 mg codeine).


Posted in Aspirin for shadows on 02 May, 2012 - 6:44 pm

Thanks Anie S,

It is nice to hear that you have found benefit using a similar strategy to mine. I am pretty new to this and don't have a well established pattern of headaches to be able to judge yet what does and doesn't work. Its frustrating that something that seems to work well one day fails the next time you try it.

Cheers,

Dave


Posted in Aspirin for shadows on 01 May, 2012 - 9:08 pm

I have been getting quite a bit of shadowing lately. Even though they are not particularly painful it is a bit of a nuisance. They probably hover around a 2 or 3/10 and I often just put up with it, but after a few hours tend to get sick of it.

A doctor recently suggested trying high dose aspirin ie 3 tablets (900mg) and particularly said to use Aspro Clear as it is quicker absorbed. I have tried this a few times now with relief after about 20 mins. Obviously I would need to try it many more times to be sure it is being effective and it wasn't just a coincidence that I took the aspirin just before the headache was about to go away anyway. Today I tried 2 tablets (600 mg) and it also seemed effective, but took more like 25 - 30 min for relief.

So I guess I am looking for feedback as to whether anyone else has found aspirin effective for shadows? Or have you had success with other mild analgesics (eg ibuprofen)?

I really doubt aspirin would help with a full on attack, but some relief from the niggling hours of shadows is nice. I would not want to overdo this in case it resulted in rebound headaches, but I doubt that taking some aspirin once a day would be a problem.


Posted in Friends of Science in Medicine - a helpful patient resource. on 27 Apr, 2012 - 9:53 pm

Ooops! Obviously I did misinterpret your post. I haven't been on this forum that much over the last few months so am a bit out of touch with who is who. icon

Thanks for posting the info though. I think a group like FSM have a vital role in the community as there is potential for much harm (and financial ripoff) from some unproven complimetary medicines. I like to keep an open mind though as many main stream drugs of great use have come from natural ('herbal') sources - morphine from the opium poppy, digitalis from the foxglove plant, atropine from the belladonna lilly etc). There are bound to be other plant based drugs out there waiting to be discovered. But my skeptical alarm bells start ringing whenever someone starts talking about 'balancing energy fields' etc.

I am still unsure about the diagnosis of my headaches as they follow a bit of an uncertain pattern. And a treatment that seems to work on one ocasion may be totally inefective on another.


Posted in Friends of Science in Medicine - a helpful patient resource. on 27 Apr, 2012 - 5:45 pm

Some may be interested in this podcast about FSM:
http://skepticzone.libsyn.com/webpage/the-skeptic-zone-183-21-apr-2
012/comments


Posted in ELEMENTARY, MY DEAR WATSON - “Proof by assertion.” on 27 Apr, 2012 - 4:51 pm

This reminds me of the issue of febrile convulsions in children (ie seizures brought on by fever). For at least 30 years that I am aware it has been believed that it is not how high the child's temperature is that causes the fitting but rather how quickly the temperature rises ie a rapid spike in temperature. You will see this information in many text books and on many websites.

However a few years ago I came across an article that questioned this assertion. I am going by memory here so I hope my recall is accurate. Apparently the writers of the article went looking for the original research that demonstrated this assertion that it was how quickly the temperature rose rather than the absolute temperature that induced fitting. However after an extensive review of the literature they were unable to find any actual research that demonstrated this to be the case. They therefore presumed that some one had come up with this idea without any actual evidence to support it, and had passed it to others, who in turn passed it to others and so on. As such it was presumed to be a true fact.

Without evidence this idea should never have been accepted. This doesn't however necessarily mean the hypothesis is wrong, just that we should never have accepted it as true without evidence. Maybe since I saw this article someone has done some further research to either prove of disprove the hypothesis (I simply don't know).


Posted in Friends of Science in Medicine - a helpful patient resource. on 27 Apr, 2012 - 3:33 pm

HI ktulu,

thanks for the interesting info. It sounds like FSM are performing a worthwhile service.

It is good to have you here on this forum as I think there can be a tendency for people who are deperate for answers to resort to sometimes questionable medical practices. Having said that, given that there has not been much research done on CH, I think it is valuable for sufferers to experiment with various treatment options provided they don't jump to conclusions without reasonable evidence. For example many people seem to find energy drinks beneficial but I doubt that there has been any actual research on this issue, and it is probably unlikely that funding for a proper placebo controlled study is going to be readily available. Lack of rigorous scientific evidence in this case is unfortunate but if anecdotally people find benefit then I have no problem with it. We start to cross boundaries though when people may resort to alternatives that could be harmful (a major issue when people use quackey for life threatening conditions such as cancer etc while neglecting known beneficial treatments) .

For those who are interested there is a very good free video available that encourages critical thinking about issues such as CAMs and pseudoscience. You can either watch it or download free from here: http://herebedragonsmovie.com/

I am a member of the Atheist Foundation of Australia (AFA) web forum and although the forum is primarily aimed at discussions relating to atheism there is also considerable discussion at times relating to alternative medicine (eg homeopathy, vaccination conspiracies, black salve treatment for skin cancer etc). The forum also discusses many scientific and research issues. The discussions are generally quite rigorous (although sometimes with lighthearted comments).
The forum can be found here: http://www.atheistfoundation.org.au/forums/

An example would be this discussion on homeopathy:
http://www.atheistfoundation.org.au/forums/showthread.php?t=6740&[/
L]


I may do a post on the AFA forum making others aware of your organisation and website as I think many would be interested.

Regards,

BlueDevil (Dave)

PS. Couldn't help but notice that FSM also stands for that well known character - Flying Spaghetti Monster! icon


Posted in Red Bull on 26 Apr, 2012 - 11:58 am

I use whatever brand is cheapest on special at the supermarket. Red Bull is generally dearer than any of the other brands.


Posted in Untitled on 05 Feb, 2012 - 9:16 pm

Thanks for the info. The Alfred is on my side of town so was wondering if there was someone there with CH expertise.

Your procedure sounds interesting so hope all goes well for you!!!


Posted in Untitled on 05 Feb, 2012 - 8:48 pm

I am curious as to whether there is a neuro who specialises in CH at the Alfred?


Posted in Imigran overdose? on 05 Feb, 2012 - 11:12 am

Hi Al,

firstly, I looked at some of the practitioners listed here recently and got the impression that some of them were no longer practicing at the specified locations. I can't remember the specifics now but there were two professors listed, one at Monash and one at the Alfred, but google gave me the impression they may no longer be at those hospitals. I did get a number of hits relating to CH at St Vincents Hospital or possible private neurologists located nearby that hospital. If you find someone good let me because I am hunting around myself for a definitive diagnosis from a specialist.

As far as treatment goes oxygen has a proven track record both anecdotally and according to validated research. It carries no side effects when used in regard to CH and can be used many times a day if need be. It may not work for 100% of people but there is only one way to find out if it is suitable for your partner. The only stumbling point may be your doctor if they are not familiar with CH and the use of oxygen in that setting. You would need a high flow oxygen setup quite unlike the home oxygen devices most GPs would prescribe for patients with airways diseases.

Also worth trying some Red Bull or similar energy drinks containing caffeine and taurine. It seems many CH sufferers find significant benefit, but I don't know that there has been any reliable research one on this (?).

I am a beginner in this field so I am sure there will be many veterans on this forum who can advise you further on these matters. Good luck.


Posted in A Cure for Cluster headaches!!! on 02 Feb, 2012 - 7:00 am

saintpeter said:
"Good Heavens, who would have believed it? A naturally ocurring substance potentially has medical benefits.
Now watch the drug companies ramp up an extermination program...


Actually there are a number of widely used drugs that have their origins in plant or natural sources. And they can be big earners for the drug companies. Drug companies have spent quite a bit on searching for drugs from plants, coral reefs, venoms etc.

Personally if I was going to take psilocybin I would prefer to take a tablet prepared by a drug company with know dosage and purity as compared to self prepared product from mushrooms.

Examples:

morphine opium poppy
atropine bella donna lilly
aspirin willow bark (although we now use a modified version)
digoxin foxglove plant
penicillin mould
caffeine coffee bean (and others)
streptokinase streptococci

Sorry for the thread derail but I find it interesting that many powerful drugs come from plant sources. While I am sceptical about many claims for 'herbal remedies' I have to admit it is likely there are many more plant based drugs that are yet to be discovered. The perfect cure for CH could be lurking out there in a rainforest or in marine corals etc.

Link
http://en.wikipedia.org/wiki/Pharmacognosy


Posted in Nines ACA on 29 Jan, 2012 - 10:03 am

I don't know that I would be entirely negative about the possibility of ACA or TT running a CH story. Occasionally they do some worth while stories without too much crap and misinformation thrown in. One possible advantage is that ACA and TT tend to 'follow' each other so that if one of them does a story you can almost guarantee the other one will do one very soon after - sort of a 'two for the price of one' deal. icon They also have the higher audiences so more exposure than the other shows.

I must agree though that the quality of what is on offer on ACA and TT is generally pretty poor and not really what I would regard as "current affairs". Stories that reoccur on a regular basis include:
- the neighbour from hell
- the shonky car repairer charging for uneccessary work
- the ' elderly battler' who is being edged out of their property by a big developer
- the latest push up bra
- the new clothing range that enables you to 'lose' two dress sizes instantly
- the latest natural remedy for arthritis (with bugger all scientific research backing it)
- neibour disputes over fences
- the real estate scammer who ripped off someones life savings
- tenants who totally destroyed their rental property

The George Negus alternative was much better but it goes to show that the 'average' person out there likes to watch sensationalist crap rather than real current affairs since George got canned while ACA and TT keep going.

Of course the issue of what benefit would potentially come from any media publicity is difficult to judge. I see myself as an 'outsider' since my diagnosis is uncertain and if I do have CH it has been mild so far compared to what many of you suffer. It would be up to those of you who have suffered the beast for years to decide whether media attention is good or bad.


Posted in Energy Drinks Oxygen & others on 29 Jan, 2012 - 9:41 am

Thanks for the info Sara.


Posted in Energy Drinks Oxygen & others on 27 Jan, 2012 - 5:59 pm

Hi Sara, I am curious as to how you use the taurine? Do you mix it into water, take it off the spoon etc. I presume you combine it with some form of caffeine - what do you use?

How effective do you find it? What advantages does the powdered form have over just drinking some Red Bull?

Just seeking further info!

Cheers,

Dave


Posted in Nines ACA on 27 Jan, 2012 - 5:56 pm

What about Ch10 "The Project"? - they do medical stories and have a Dr as one of the panelists at times. Pity George Negus's program got canned.


Posted in Energy Drinks Oxygen & others on 27 Jan, 2012 - 3:23 pm

See link below for a media story entitled "Energy drink horror stories from our readers". I think it is worth noting that for some people energy drinks are not a good idea, at least in large quantities. Something for each person to judge or seek advice from their doctor on.

http://news.ninemsn.com.au/national/8409236/energy-drink-horror-sto
ries-from-our-readers


Posted in I'm new here on 27 Jan, 2012 - 12:12 pm

Hi Matt,

thanks for your comments. I hadn't heard off the fast acting tabs. I just have a generic brand called Sumagran so presume it is not fast acting. Will look into these issues more closely should it become necessary.

As far as oxygen goes I am in a fortunate position because I can access it at work for the time being (I'm an ambulance paramedic) . If it becomes evident that I need it in the long term and want a supply at home I may well use scuba gear as my source. I have a scuba certification that allows me to use 100% O2 and there is a dive shop only 10 min away that can provide 100%. One of my tanks is due for its annual hydrostatic test so I will get it 'oxygen cleaned' at the same time in case I need to use it for that purpose.

I am also thinking I may get an appointment with my physio and get my neck checked out just in case it is musculoskeletal related pain. It seems unlikely from some of the features of the headache that I have to be neck related but it may be worthwhile eliminating that as a possible cause.

Cheers,

Dave


Posted in I'm new here on 26 Jan, 2012 - 11:50 am

I got to see my GP yesterday for the first time since the headaches. He thinks CH is quite possible but the random pattern of my HA's has him a little confused. Says he can't exclude migraine. He recommended oxygen (so at least has some familiarity with CH) and was interested to know I had already had some success with this.

He has prescribed Imigran but I didn't think to discuss what form with him when he was writing out the script and so I have ended up with tablets, which I gather from what I have read are generally too slow acting to be of great help in CH. Anyway I will give them a try next time and see what happens.

He wants me to come back in a week or two with a view to a referral to a neurologist if the diagnosis remains unclear.


Posted in Energy Drinks Oxygen & others on 26 Jan, 2012 - 11:42 am

Facing the possibility that I have CH I have been checking out energy drinks, since they are something I have never really been into in the past.

Just thought I would pass on some 'specials' I have come across in case anyone else was interested. All have fairly high levels of caffeine and taurine:

Coles: currently have V Double Hit 500ml on special at $8 for a 4 pack (ie $2 per can) - not sure how long for though or whether this is just local to Melb.

Aldi: Mother 500ml for $1.99 per can

Reject Shop: Mother 500ml $8 per 4 pack (ie $2 per can)

Anyone got any further tips for cheap sources of energy drinks?

Are people finding energy drinks useful for major hits or more for the mild ones?


Posted in I'm new here on 23 Jan, 2012 - 9:50 pm

Hi AndreinACT,

thanks for your welcome. Interesting to hear that your CH started in a similar fashion. I have had further headaches since my first post above, but they have been somewhat more mild that the initial ones. Tried some Nurofen Zavance but not entirely sure how effective it was (although got no worse than a 6/10 which is better than 8 or 9). Also tried some Red Bull for a stronger shadow about 3/10 and it seemed to ease off after 10 min or so. The problem is at present I don't have any established pattern to my headaches in terms of intensity and duration so it is hard to know if an abortive has actually worked or whether the headache was only going to be a short mild one anyway.

Will be seeing my doctor this week.

Interested to hear that you get your HA's around 1am but earlier if you have had alcohol. Made me wonder if there would be an advantage in taking alcohol deliberately so that you got the HA out of the way earlier rather getting woken at 1am????

Thanks again for your good wishes,

Dave.


Posted in oxygen availability on 16 Jan, 2012 - 1:21 pm

Barry T Coles said: I have a beard so I don’t use a mask I breathe straight from the bag, in through the mouth out through the nose, at onset I will set the regulator at 12l/m & breath hard & fast for a while to get as much o2 into me as quick as I can but am only able to sustain that sort of breathing rate for a short period of time, when I feel that the o2 is starting to work I will turn the flow rate down to a point where I am taking in a full bag of air & expelling it at a rate in time with the bag filling up again.


Hi Barry,

that is an interesting technique and would seem to overcome the problem of air getting into the system due to poor sealing of the mask. I saw reference on the OUCH US website to the "Clustermasx" which at face value looks like it may have advantages over the regular non-rebreather mask in terms of providing a better seal. I am wondering if anyone here has tried one?

Just another question though: at 12 lpm and with you breathing hard and fast I would have thought your usage would be exceeding the supply?


when I am in full high cycle & can go through an E bottle in 2 days at around $90.00 each it does become an expensive exercise.

Cheers
Barry"


I am shocked by the cost. $90 in 2 days would be getting pretty expensive. I am curious as to how much usage you would be making of it? eg how many sessions per day, how long per session etc?

Being a scuba diver with certification to use 100% O2 my thoughts turn to that as an option. Just spoke to my local dive shop about their costs for O2 and then did some calculations - all approximateand hoping my basic arithmetic isn't flawed!

Scuba tank ~ 10 litre volume (smaller or larger tank sizes are available)
Fill pressure ~ 160 bar

10 litre x 160 bar = 1600 litres of O2 (roughly equivalent to a D cylinder)
Cost is .02 cents/litre
So 1600 x .02 = $32

Assuming usage of 15 lpm for 20 min
15 lpm x 20 min = 300 litres used
So tank would give:
1600/300 = 5.3 sessions (say 5 ) per tank
Cost approx $6.40 per session
Advantages:
- as close as you can get to 100% for every breath
- no hiring or delivery costs
- no 'prescription' required and could access from any dive shop that caters for technical diving (eg when travelling)

I don't really know how that compares to the costs of medical oxygen supplied by BOC or Supagas etc other than the figure you mentioned of $90 for an E bottle and an E bottle being around 4200 litres that would work out to around .02 cents per litre, which is what my dive shop quoted me. The only ongoing cost would be having the scuba cylinder tested and cleaned annually, and the scuba regulator serviced every few years. I am also not sure how accurate my assumptions are about how much O2 I would use per session etc so that may effect my calcs .

Still hoping that none of this proves necessary for me since it is a few days since I have had a headache and hoping it stays that way!


Posted in I'm new here on 15 Jan, 2012 - 12:34 pm

Thanks Sara for the helpful info.

I am picking up so much info here all the time.


Posted in I'm new here on 15 Jan, 2012 - 11:01 am

Thanks for the welcome.

I will see my GP soon for assessment. I note on the list of practitioners for Victoria that there are some experts locally at the Alfred Hospital and Monash Medical Centre so may see if I can get a referral.

As for the Endone (and Panadeine forte) I use these at times for severe back pain. It seemed reasonable the first two times I got these headaches to use strong pain killers but I was unaware at the time that most people find analgesics of little benefit, particularly narcotics. I am learning fast though! (hence the use of oxygen on the third occasion). I do intend to get some Nurofen Zavance to carry with me given that it seems some have had success with that. Am also keeping some Red Bull at hand.

I do find that I have a little bit of ongoing 'residual pain' (if that describes it) from time to time in the area above my right eye which feels like a verrrry mild version of the pain I had with the bad headaches. I guess 'sinus pain' is a possibility given the location but I have no other symptoms to suggest sinus issues and have never had sinusitis in the past. The rapid onset and offset of the severe headaches makes me think that sinus headache is unlikely.

So far no more headaches so I live in hope that I don't have CH. However, since I work in a medically related field I am finding it well worth while learning more about something I had quite limited knowledge of previously.


Posted in oxygen availability on 15 Jan, 2012 - 10:30 am

A further comment on the issue of percentage oxygen obtained from a non-rebreather face mask:

I quoted a figure of 95% at a flow rate of 15 lpm (from 'Oxygen First Aid' by John Lippmann).

The book however makes further mention of this by stating that this is potentially achievable under ideal conditions which include:
- making sure the reservoir bag is filled prior to applying the mask
- the one way valves are fitted and sealing properly
- a good seal with the face is achieved
- the reservoir bag does not deflate fully with deep inspiration (ideally not more than a third)

The book does note that these ideal conditions can be difficult to achieve and therefore O2 percentage can be significantly less than 95%.

If usage is not optimal as per the above requirements then increasing the flow rate beyond 15 lpm may well be beneficial. I guess you could argue that before increasing the flow rate you should ensure that your technique is good.

Another factor would be respiratory rate and depth. The faster and deeper you breathe the quicker you will empty the reservoir bag, hence percentages may drop and an increase in flow may be needed to compensate. I would think most percentage figures would assume an 'average' rate and and depth.

No doubt there will be many on this forum though that have a vast experience in self administration via non rebreather mask in the setting of CH so would be interested to hear of your practical experience (rather than my theoretical speculation .icon ) I have a lot to learn about CH as yet.


Posted in oxygen availability on 15 Jan, 2012 - 9:09 am

Sorry for the long post that follows! I also want to emphasize that some of what I have written is speculative in nature!


I am a newbie so have only done limited research as yet. I have noticed a lot of focus on oxygen flow rates in much of what I have read. I find this interesting since I would not have thought that flow rate was the crucial factor, but rather a ‘means to an end’. Now there may be some factor associated with O2 and CH that I am not aware of so please correct me if I am wrong but I would have thought the true goal would be high percentage O2 (ie 100% or as close as possible). I am not saying that flow rates aren’t important, but rather the flow rate is the tool by which you achieve the real aim, which is high percentage O2. If there is some reason why flow rate is important in its own right in CH then please point me in the right direction and you can probably disregard the rest of what I have to say below.

(By the way, talking about flow rates without specifying the delivery device is not really conveying all the necessary information – however I presume the non-rebreather face mask would be the ‘standard’ mask used by CH sufferers since it is capable of delivering very high percentages so this is largely what I am discussing).

I presume the focus on flow rates is due to the fact that this is a measurable (and adjustable) quantity, whereas for most people there is no cheap or easy way of measuring oxygen percentage. Published data for O2 percentages delivered by various devices at particular flow rates does tend to vary from one source to another. Although the figures are generally in the same ball park there is often considerable variation which makes it difficult to evaluate best flow rates.

The reason I raise this is that I have seen people referring to very high flow rates in the order of 25 lpm and wonder if there is truly much benefit for such a considerable amount of O2 being used. Does anyone have a table showing flow rate vs oxygen percentage for the non-rebreather mask? What I am thinking is that you probably reach a point of diminishing returns. Let us say that you got 95% O2 with a flow of 15 lpm, how much increase would you get at 25 lpm? Obviously the absolute maximum benefit you could get would be another 5% to bring you up to 100%. But let’s say that 100% is unlikely and the real figure was around 98 or 99% (I am speculating here!). This would mean that using 15 lpm would give you 95% O2, but using another 10 lpm (for a total of 25 lpm) would only give you another 3 – 4%. Given the cost of O2 is it worth using another 10 lpm to gain only an extra 3 or 4%?

I guess if you find personally that 15 lpm doesn’t work for you and 25 lpm gives you benefit then clearly the answer would be that it is worth using an extra 10 lpm. But given that the increased percentage is small I would have to wonder if the additional benefit may be placebo in nature?

In particular I am thinking that at very high flow rates there will be an element of wastage – some of the oxygen will simply flush through the mask and go into the atmosphere without being breathed in. Theoretically with a non-rebreather mask if you are keeping the reservoir bag virtually full throughout the breathing cycle then you should be at close to the maximum percentage you will get (ie there is plenty of O2 in the reservoir to supply you with O2 for each breath). In this case I would speculate that increasing the flow rate further would have little benefit.

Of course what I have written above may not be valid if the figure of 95% at 15 lpm is incorrect (I got it from Oxygen First Aid by John Lippmann). I have seen some sources that have quoted figures around 80% at 15 lpm. If that was the case then maybe increasing to 25 lpm may be of benefit if it were to increase the percentage, say, into the 90% range. Without accurate data it is really hard to know where the truth lies.

One of the reasons I have raised this is that there may be other options that will deliver 100% O2 with less oxygen used (so less ongoing expense). As I said in my introductory post I don’t as yet have a definite diagnosis of CH, but I am exploring my options should a supply of oxygen become necessary for me. Can post more on the alternatives I am thinking about later if anyone is interested.


Posted in Sp02 levels (oxygen levels) on 14 Jan, 2012 - 9:39 am

Oxygen saturation often drops when recumbent or semi-recumbent due to the fact that breathing is less efficient in this position compared to sitting or standing. This is more evident though in those who are overweight. When lying the abdominal organs push against the diaphragm and reduce the amount it can move. This is why someone who is short of breath (eg asthma or pulmonary oedema) will nearly always want to be upright - they simply can't breath adequately when lying down.


Posted in I'm new here on 13 Jan, 2012 - 8:35 pm

Hi All,

I am not sure yet if I belong on this site!

I have had some really bad headaches lately and doing some reserch on the internet I note that some of the symptoms match the description of cluster headaches. However some aspects don't seem to match.

I have not yet been to a doctor so realize that I need to do so and that self diagnosis can be fraught with dangers.

About 3 months ago I got a really severe headache soon after having a modest amount of alcohol. It was really agonising and I tried pain killers, including Endone with no relief at all. Since then I have been fine until a few days ago.

A few days ago I got a shocker of a headache. It started soon after a single glass of alcoholic cider. At first it was just a mild right sided pain but it quickly escalated into sheer agony. The pain was right sided only, predominantly above and behind the eye. At times it radiated into the upper jaw and rear teeth. My right nostril was running like a tap. I couldn't stay still. I tried lying down but couldn't stay there for more than a few minutes. I paced around the house telling the headache to 'f... off' because I couldn't think of anything else to say. I didn't have any eye lid drooping or tearing though. I tried some anti-inflammatories and two Panadeine Forte but they had no effect whatsoever. The pain lasted about 1.5 hrs and then spontaneously went away - the sense of relief was fantastic!

The next day I was fine, but two days later I had a runny right nostril all day and just didn't feel quite right. I tried a double dose of my hay fever spray (nasonex), some sudafed, and a nasal decongestant spray but nothing would stop it. I have no idea if this runny nose was significant but I noted that it was the same nostril that was runny when I had the headache. Anyway, later that evening the headache came on (no alcohol involved this time). About 5 - 10 minutes of mild discomfort then it it hit really hard. I had already done some internet research and heard that oxygen could be beneficial. It happens that I work in a medically related field and could access oxygen at my workplace only a few minutes from home. I put myself on oxygen and the pain had eased from around 8/10 to about 1/10 after 10 - 15 mins. I continued on the O2 for a total of 20 min and the remaining pain gradually subsided.

So in total I have had only 3 headaches, which doesn't seem to constitute a cluster pattern. Clearly I need to go and see my doctor as soon as I can. But I am wondering if my experience sounds anything like other peoples experiences? Did your problems start with an irregular pattern initially? I have read others posts of getting multiple headaches per day for weeks or months and can only have sympathy.

Must say this is a very interesting and informative site - well done to the mods etc.

Cheers,

David