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06 Feb, 2011 - 4:45 am

Hi everyone - im after some advice. Hope this is the correct place to ask, sorry if not.
Since late December I have been waking 3 or 4 times a night, classic symptoms. "drilling headache" feels like an Axe has entered the one side of my face. Weeping left eye, pacing the kitchen and drinking pints of cold water. Was taking paracetamol which eased the pain but the 3rd or 4th attack each night was worse than the first and didnt want any more tablets as i've usually taken 6 by this point . Went to the opticians first who gave me new glasses and told me headaches should go within 2 weeks. They didnt. Went to Dr's last week who informed me Im suffering with cluster headaches. gave me Co codomol and ibuprofin told me to come back in 3 weeks if im still suffering- which arent helping. Sudafed seems the best relief I can get and are helping. My questions are Can I expect the severity of the attacks to get worse with more pain ? and Is there anything I can take that I can buy over the counter to help more ? I've started getting attacks in the day now which is effecting my work (my employer doesnt get it). Im a bit lost by it ill to be honest !

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06 Feb, 2011 - 5:42 am

Hi again, might I just add that according to the scale i've read about my worst attack is about a 7. - thanks agian in advance Steve

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06 Feb, 2011 - 11:32 am

Hello Steve
Just lost my post to you!!
You are in the right place--just hang in there, will get back to you.
In the interim, read the information on the left about oxygen treatment and also Ben's on http://www.clusterheadaches.com.au/forum_posts.php?id=2489- will endeavour to make the link this time without losing you! In fact will save this before I make the link.
HeatherThis post was edited on 06/02/2011 at 12:07 pm

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06 Feb, 2011 - 3:20 pm

Hi Steve
Back again!
Hope you have been able to have a bit of a look at the information on the left. You need to get a bit of an understanding what CHs are all about to get a handle on what you are dealing with.
First you need to be sure of your GP's diagnosis. His treatment is pretty standard for GPs for a start, I am assuming you have an appointment to return to him. If not, suggest you make one and discuss with him either what he intends to do with you next.
You need to be looking at pain relief along the lines of the suggestions within the forum ie sumatripin (imigran). Most would also be suggesting something like Verapamil to control them. Check out the medication link on the left . http://www.clusterheadaches.com.au/medications.php Your GP needs to be helping you. If floundering a little suggest you find another one who can and at the same time request a referral to a neurologist. You need someone who can be helping you and monitoring the response you are having to medications ordered.
Most important though--you need to be proactive. Start keeping a head ache record. What time they start, what were you doing/even eating/drinking/smoking!/work out your scale 1-10, how long, how they effect you, what did you take, what effect. Your Dr/Neuro can not pass this by--when they see this type of record they then get a much better picture of what you are dealing with; rather than have 4 or 5 head aches a day!
Re your work-now this is the real toughy! Steve--dont know your position, how long working there etc, but these headaches are not just going to go away over night! You are going to have to speak to your boss and explain that in the short term until you get them in control you are literally in trouble for awhile. You need his understanding and his help. Others may not agree, but as an old employER, I would be much happier knowing that an employee of mine kept me well informed of what was going on rather than not knowing.
Check out all the information: there are some useful tips like using ice packs, drinking heaps of water, coffee--all sorts. Read it all.
BTW--oxygen would be what I would be heading for first up. If it works for you, you can have it at home, and unless convenes work policy, you could have it at work. Would certainly be my first to try if I was you!! Check it out. Plus Aspirin! And water
Heather

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06 Feb, 2011 - 5:26 pm

Gidday Steve.
Firstly, a small part of your life has just turned to shit. ACCEPT THAT, but know the rest is still as good as ever.
My quick history, I have been getting these little treasures for about 30 years, and I'm a lucky sufferer. I'm cyclic, for about 2 -3 months per year I go down like a bag of shit.
And I have the joy of getting most attacks at the same time every day, so the anticipation is probably worse for me compared to others, random attacks suck, but to know their 30 minutes, then 20 minutes, then 10 minutes away really shit me and scare me.
The sweats start and you know what's coming, then its a time game to see how far up the scale I go, before its gone, and for me it can be a 9 one minute, and gone the next, which is ALWAYS nice,
Mine usually last a few hours and if I'm lucky I pass out from the pain.

The biggest hurdle you have is to accept that your now a member of a unique club, a sufferer of a medical condition that sadly to say, most medico's are not even aware of.
Your in for a roller-coaster ride until you find your own routine, (we all seem to have 1)
And then HOPEFULLY they will go away, everyone is different here ?

What ever happens with yours, good luck mate.

Talking about these little episodes is the only way to go.
Firstly YOU have to accept them, then your family, then friends and employer have to as well.
Being honest will get everyone better informed about what your living with now.
Read every page on this site, print off what suits you and take it to the Doctors, if you have a good 1, then you can both learn thru trial and error what works for you.

Good luck mate, and remember on a bad day, there are people all over who are the same, (basically rooted) lol

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06 Feb, 2011 - 6:17 pm

Steve,

I'm so sorry to hear that you are going through this too. I had 4 attacks last night, pretty much haven't slept. Been in a cluster for 5-6 weeks now, though fortunately usually only 1 or 2 a day at present.

Personally I don't care that much about night time ones- Oxygen is a godsend and after 14 years I know they will end sooner or later and i will get 6 months + respite. It's the daytime ones that get you- I love my job, I also need it and have a family to feed.

Sumatriptan injections (tablets and nasal spray are useless for most of us) are the key here. You get the signals, wait a minute or two just to make sure and then wallop in an injection. At $75 a time they aint cheap and you can use max two per day but for when you are at work and you just have to keep going they are brilliant. You feel like hell for about 20 mins, your palms sweat, you feel shaky and rotten but you are not in pain and can function. Well, unless you are a surgeon, then probably best not.

You need to get an injector kit to start you off, they are about $160 and come with two injections. Then get 5 refills on the refill kit at about $150 for 2 injections. I seem to end up using about 2-4 a week during a period.

I have heard of ways of making the injections last longer, not sure how it is done but apparently 1/3 dose also works. It's worth a thought if you are hard up. Google it.

Right, other daytime cures- get oxygen in your office if your boss will let you (i'm lucky to have a great boss) if not, caffeine is king. Start the day with a good double shot and keep topped up- red bull is also very effective. Usually during a period i get through 2-3 double shot coffees a day and the occasional red bull (i hate the stuff but it works for me). Often you will pay for it later as they come on HARD at night but if you have oxygen to hand at home you have kept your job and it's a small price to pay.

I should add caffeine doesn't always work for me and it makes you feel like hell from all the bloody stuff. I hardly touch it out of a cluster period.

Verapamil did work well for me as a preventative, it doesn't any more but two years respite was a great help. 180SR per day is what i was given.

Prednisone tapered up to 80mg/day and back down again over 3 weeks is also supposed to abort attacks- it worked for me once but i hated the side effects.

One word of caution, you can end up feeling like a toxic waste dump after a while from all the meds. Try them slowly and don't ever mix ergotamine and sumatriptan.

Do not drink or smoke during a period, there is a definite link for 90% of us and try stay healthy as possible otherwise you just can't cope.

Good luck, as Mr Happy says, part of your life has just turned to shit but you will get more used to it and accept it. Being a CH suffered does have one advantage- you get used to pain, it's not much help but at least tattoos and surgeries are a breeze after.

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06 Feb, 2011 - 11:56 pm

Me again!
I am happy to report that oral sumatripin works a treat for me! I start with 50mg and if no effect follow up with another 50mg 10minutes later. Can take up to 300 mg in a day so gives me a fair margin to work with. Didnt like the nasal spray all that much, plus yes very limiting in number of doses. With regard to number of doses of injectable there is definitely a way of being able to "break" the doses into smaller ones so you get better value -- pretty sure the information is on the left somewhere. Lot of the guys use it that way. I haven't personally used the injectable form, but if and when my next cycle starts I would reckon I will go down that pathway. Certainly sounds the way to go for you for work! I tried a Redbull once at night, but found the bouncing around the walls a bit hard to take!
Steve you are just in the early stages and probably just feeling your away around and thinking what the blazes is this all about. I urge you to find out all you can about this thing called CHs. Treat it for what it is an illness. Whilst there is a huge raft of self help measures you still need to be finding a good doctor who can be at the very least guiding you through and prescribing for you. It is a bit like finding a good car repairer!
Just know that there is treatment available--you just need to find what will work the best for you. If you are a smoker/drinker--the words above are spot on--watch what happens when you!
Remember keep an accurate record of what going on, get that appointment. Getting oxygen is NOT DIFFICULT. When you feel an attack coming on, go straight to the local hospital, ER room and simply say you suffer from CH, and ask for oxygen at 15 litres a minute with a non rebreather mask! Explain that timing is of the essence, that waiting is not an option, that you are in pain that rivals biliary or renal colic. Do not stand meekly by "with a headache". See how you go!
Got to go to bed.
Good luck for tomorrow
Heather

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07 Feb, 2011 - 10:17 am

Just been reminded of Melatonin
http://www.clusterheadaches.com.au/forum_posts.php?id=2464
worth a read, and perhaps an introduction to a real brave little lad
Heather

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08 Feb, 2011 - 12:19 am

Thanks everyone, Some great help here really appreciate it.
I have an apointment with my Dr for early March. I''ll go back sooner though (this week). On my last visit he told me about going to a nero. I'll force this issue with him and ask about Gas.
I managed to have an attack free night last night. Slept through like a baby. The night before though went to bed at 11.00pm, Up at 1.00 with a mild one and it passed quickly. Back at 4.00am with a more painfull one (lasted about 30M) and then back at 6.00am this worse again. My night time attacks are deffinatly worse than the limited day time attacks i've had. During the night I found it helped to stand outside in the rain/cold. Now in the UK it's -3c so I looked more than a little odd. (really couldnt have cared at the time though.)
I've tried to explain what im going through to my close freinds and family. My wife has been great. I am trying to explain to her how terriable this will get and prepare her - she seams ok but it could be a big test for us.
Once again thanks everyone for your advice - Steve

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08 Feb, 2011 - 1:29 am

Heather,
I am particularly concerned about the dosages of Imigran tablets you are using and the frequency with which you take them. 300mg per day WOW!!!!
I have extensive long-term experience with this drug. You may run into complications. I find any oral form of Imigran takes at least 25 -45 minutes to have any beneficial effects.
I would definitely not be popping pills 10 minutes apart.

I have overdosed on Imigran, it is not fun. These sorts of dosage levels may affect your blood test results and oragn functions as it did mine. I had dosages FAR in excess of what has been clinically trialled in humans before. 5 injections in 24 hours after a period of prolonged use turned me the colour of SHREK and put me in hospital with a "Toxicity syndrome..."

The FDT version may help you out, but I think you are a possible candidate for injections.

A quote from your post:

"I am happy to report that oral sumatripin works a treat for me! I start with 50mg and if no effect follow up with another 50mg 10minutes later. Can take up to 300 mg in a day so gives me a fair margin to work with."

I use 50mg Imigran FDT- SUMATRIPTAN FAST DISINTEGRATING TABLETS prescribed by my GP and available at most local pharmacies.

The datasheet:
http://www.racgp.org.au/cmi/gwcimfdt.pdf

Here's a picture of the box:
http://www.google.com.au/imgres?imgurl=http://www.gsk.tw/pic/Produc
ts/medicines/IMIGRAN-2-1.jpg&imgrefurl=http://www.gsk.tw/products/medi
cines/IMIGRAN.shtml&usg=__wVljSDdK4gc1dB2mfXWIsJThEaw=&h=209&w=388&sz=
18&hl=en&start=0&sig2=ANkmy0ug666IZTJ7XL_sSQ&zoom=1&tbnid=Wsvk1XyERdOG
SM:&tbnh=133&tbnw=220&ei=9g1QTbCXCJHcvQP0h8jsDw&prev=/images%3Fq%3Dimi
gran%2Bfdt%2Btablets%26hl%3Den%26safe%3Doff%26client%3Dfirefox-a%26rls
%3Dorg.mozilla:en-GB:official%26biw%3D1024%26bih%3D584%26gbv%3D2%26tbs
%3Disch:10%2C114&itbs=1&iact=hc&vpx=677&vpy=297&dur=1700&hovh=165&hovw
=306&tx=89&ty=185&oei=5g1QTbTuN8fJccPk4ckL&esq=6&page=1&ndsp=13&ved=1t
:429,r:12,s:0&biw=1024&bih=584

An article on the full stroy of Imigran:

http://www.gsk.com.au/resources.ashx/prescriptionmedicinesproductsc
hilddataproinfo/842/FileName/CC8BC3F4C28951EB73E0697BEA77A7F4/PI_Imigr
an_Tablets_Injection_NasalSpray.pdf

An excerpt from that article:

After oral administration, sumatriptan is rapidly absorbed,
70% of maximum concentration occurring at 45 minutes. After a 100 mg dose the mean maximum plasma concentration is 54 ng/mL. Mean absolute oral bioavailability is 14%
partly due to pre-systemic metabolism and partly due to incomplete absorption. Oral
absorption of sumatriptan is not significantly affected by food.
Imigran FDT tablets and Imigran tablets have been established to be bioequivalent in the fasted state. In the fasted state, sumatriptan tmax was, on average, 10-15 minutes earlier for Imigran FDT relative to Imigran tablets. Imigran FDT after a high fat meal resulted in an average 12% increase in AUC(0-∝) and 15% increase in Cmax relative to Imigran FDT in the fasted state. AUC(0-2) was estimated to be an average of only 5% lower and tmax delayed by only 6.5 minutes for Imigran FDT in the fed, relative to the fasted state.
These variations are not considered to be of clinical significance.
END EXCERPT.................................................................................................................................

If you are leaving only a 10 minute interval between 50mg tablets, either you are not waiting long enough for the drug to adequately work - OR - you may need the 100mg version. Don't you get a rebound attack 4-6 hours after taking oral Sumatriptan?

It sounds to me like you need the injections. The RAH can prescribe and dispense the injections under the supervision of a PMU specialist at PBS rates ($5.60 for up to 12 injections for Health care card holders and pensioners).

Sorry I have to end it here, lost my post once, wrote it again, kept it short, now my head is starting to hurt...It's also 2am...
I will be writing my posts in Word from now on and cut and pasting them over here, I am tired of losing so much information!

Cheers, Ben.

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08 Feb, 2011 - 6:53 am

Hi Ben
No I am fine with Imigran, will respond more fully to you, but have to rush.
Thank you for your concern though, really appreciate.
Heather

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18 Feb, 2011 - 2:16 am

Hi everyone. Thanks for all the advice, im pleased to report that my cluster has passed. CH free now for over a week. ( and only 3 CH in 10 days, all in one night ). Lets hope Im free for a while. My Shadowing has disapeared completely and Im having no "twinges" above my eye. Looks like my cluster lasted about 7 weeks with a fortnight of quite intense CH in the middle. I've learnt alcohol is a major trigger alnog with spicey food ???Good luck everyone. I feel for every single person who suffers with these monsters.
Still a long way to go for me to discover what works from a preventitve/abortive measure.
Good luck everyone.

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18 Feb, 2011 - 11:41 am

Hi Ben
Sorry had to rush with last posting. (I should say that I rarely take Imigran now so most of what written is from the past)
I took 50 to start as quite often that is all that I needed. If however in 10 minutes the pain had not resolved the extra 50 is all that I needed. This was better for me than taking the 100 up front. I did/do indeed have to monitor my intake very carefully and yes you are right about taking care about all the side effects. I use the FDT. It was only when I was in my real chronic state that I was using up to the 300mg a day and I hope to blazes that I never get to that stage again! There had been concern re MOH--the use of injections was discussed--I wanted something to stop the pain long term--and a treatment to stop the headaches--in other words the world! That is why we tried all the IV drugs and finally used the IV Lignocaine to stop the pain and fortunately by then the Topomax had kicked in. I have been in remission now since October 2010. I really understand and thank you for your concern.
All the information that we can provide for all our fellow sufferers out there must be such help for them. I know when I was first diagnosed I just did not know where to go or what to do. Roger and his site was like finding gold.
Cheers
Heather

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