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dolphinlady

(Member)
From:
4 total posts
Currently suffering :(
a little bit overwhelmed with it. has taken 4 years and 4 different doctors to come to this conclusion. but now that i know i can look at treatments. what are some things i should look out for with this? any help from anyone is most appreciated. i am glad that i have found out what it is now, but also a little perplexed by it all. just another thing on top of everything else, i have already been diagnosed with kidney disease and now this.icon
i have looked online for things but have found really no help with it at all. i would like to know what some of you have gone through....... and what you have used or what has helped you with this. thank you in advance
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Guy

(Member)
From: Perth
22 total posts
Currently suffering :(
Hi Dolphinlady,

Very sorry to hear that you are now a CH suffer, however, we are here to help.

Personally I find the forums on this site perhaps a bit disorganised, as perhaps are all CH sufferers when suffering smile

However, I also take blame on myself in this regard, in that I don't tend to respond to specific postings, but rather to the forum the posting was sent to.

I think you will find some recent, useful experiences and information under the “Currently Suffering” > Hi – another “newbie”… posting.

Hope this helps
Cheers
Guy
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hi Dolphinlady
Bit slow of the mark--sorry!
Guy is right--just like all forums--we can get a bit lost in headings where we are inclined to chat on about all and sundry and go back and forth a bit.
Welcome to our site--sorry that you have a double whammy--CH and kidney disease! Obviously you will be needing to keep this very much in the fore with your medical treatment.
I always recommend to new people to read all the information on the left hand side of the site. This is where you can find out the most about our illness.
You need to get a good handle on what our illness is all about--and start thinking about it as that is what it is an illness and that you suffer pain and that you dont just "have a headache".
You say you have been diagnosed--good start--but you have not said whether you have been given any help with any medication or a pathway forward.
Again check out on the left.
There are 2 pathways to look at and this is dependent upon your history of headaches. How often, how intense etc. Do you need to be looking at preventative, and also of course what to take when they "attack" you. Read up again on the left.
Also read the information on the left re oxygen. In many cases the early life saver for many of our people. Can be trialed at ER and at Drs rooms and ever Fire Stations and have read recently BOC oxygen suppliers!!!! I used to write this all down for people--but now I say--be proactive--and read it all there on the left.!!!
Start keeping a diary of your headaches--when they start, what level of pain/intensity, how long, anything/everything associated with it. This is invaluable for the doctor. Especially when you add what you took for the pain relief and it indicates whether it had any effect or not.
When you see your Dr you can then clearly show him/her your history--just as a diabetic would with blood sugar levels. If your Dr not able to help, find another, request a referral to a neurologist. Keep seeking help to find that person that can help.
On a personal level--after nearly a year of acute on chronic attacks and now in remission I can tell you there IS ALWAYS light at the end of the tunnel. You need to remain proactive in your treatment--whether home based with oxygen, ice or working with medicos with different medication. Read the information on the left.
I spent a total of 15 weeks in hospital this year on and off trialing different treatments!!!
My current regime is now down to:
Daily: preventative--Topomax 200mg and Verampamil 160mg BC
At the ready if attacks hits me (and never without): oral imigran 50mg (knowing I can take up to 300mg in one day)
Back up plan: Admission for IV Infusion of Lignocaine over several days to stop pain and then to pain clinic for further investigation as to pain management
Also seeing another neurologist interstate next year for a second opinion to ensure that we are not missing out anything.
I do not intend to sit still or down to let this illness manage me--I will manage it. So Dolphinlady--what do you intend to do?
Heather
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dolphinlady

(Member)
From:
4 total posts
Currently suffering :(
thank you both. i am on medication, it is called nolten, and have been given heaps of info and have been googling and looking around this site. a diary is a fantastic idea. i do take panadol but does not seem to work. and i am not allowed anti-inflammatorys at all, due to my kidneys. heather i intend to manage this and hopefully figure out a way to overcome it.
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
well done Dolphinlady--positive is the way to go.
Re the panadol. From my perspective it does nothing except give your system something else to deal with! And certainly with your kidney problems you have to worry about there. General analgesia does nothing for most CH sufferers so you make your own decision there. I remember going to ER late one night after having reached the end of my tether and finally admitting to my husband "I could take it no longer"! I had taken my maximum in Imigran for the day, had taken Endone (oxycodone hydrochloride--a narcotic analgesic) with just a dulling of the pain (in hind site I think it just makes you a bit sleepy). All the GP who knew offered me was panadol! I was not impressed. So if you dont think it works--dont take it!
Are you seeing a neurologist?
I cant find any information on nolten! Is it noten that you are on? Has the Dr explained to you what the drug is supposed to be doing for you?
Have you read the information about oxygen? This would have to be THE most helpful for people with CHs. Was VERY helpful for me in the early days.
Got to go now.
Cheers
Heather
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Guy

(Member)
From: Perth
22 total posts
Currently suffering :(
Hi Dolphinlady,

Noten a beta-blocker and yet another medication not on my list. However, have taken the beta-blocker Propranolol. Sorry not mentioned in any of my previous postings, but as a long time CH sufferer (19 years) I forget about all the different medications I have tried.

No doubt from your research you will have found that with CH what works well for some doesn't necessarily work well for others. Unfortunately Propranolol did not work for me, but I hope Noten works for you smile

Not much more I can say after Dusker's excellent postings/advice, but my current medication, which I have been taking for episodic CH for the last 4/5 years is:

- Verapamil as a preventitive, 240mg a day when suffering lightly, otherwise 480mg or even 720mg a day when reaching the peak of a CH cycle.
- Sumatriptan as an abortive, 20mg nasal spray when you get a CH.

This combination of drugs of all those tried has been the most effective for me in reducing both the intensity and frequency of CH, however, it is not 100%

Unfortunatley this year I believe my condition has changed from episodic to chronic, like Dusker, as have not gone longer than 2 weeks since March without a CH, and in the last 9 weeks multiple CH per week.

As a result I may look to change my medication if the above does not continue to keep the condition under control. Duskers recommendation of Topomax is one I haven't tried.
Having said that I haven't had a CH for 10 days now so hoping I am having a bit of a remission period smile and the above still stands as my recommended medication for CH.

Hope this helps

Cheers
Guy
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Guy

(Member)
From: Perth
22 total posts
Currently suffering :(
Hi Dolphinlady,

Sorry forgot to mention in my last posting, and in complete agreement with Duskers sentiments, do not bother with any form of tablet based pain killers they will do nothing.

Generally CH doesn't respond much to the pain biofeedback mechanism, and the only pain killers that may/may not work are those that are either nasal based or injected.

Duskers experience: Oxycodone hydrochloride, which is a very powerful narcotic pain killer, just dulled the pain.

My experience: Tramadol, another opioid pain killer, but not as strong as Oxcodone, no effect after taking 7 tablets in 2hrs whilst experiencing a 10/10 CH (ended up going to hospital for treatment)

My recommendation take an abortive medication.

Hope this helps.

Cheers
Guy
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Guy

(Member)
From: Perth
22 total posts
Currently suffering :(
Hi DolphinLady,

Sorry just to add even more to my last posting.

Pain killers don't work, the only pain stoppers that do work, and this isn't based on personal experience but research and Duskers treatment are anesthetics such as lignocaine.

Which is what your dentist uses to numb your mouth before a filling smile

Hope this helps.

Cheers
Guy
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dolphinlady

(Member)
From:
4 total posts
Currently suffering :(
thanks guys, all very helpful information, i too have found panadol not too work but really had no other options for the past 4 years as doctors just kept saying headaches. now that i know i may find the right one for me. this med i am on now seems to be working for now, i am hoping it continues to do so..... i have now found a good doctor who seems willing to help me and willing to try what ever is required of him. i am glad i found this site aswell to help me through. i am hoping to find a decent medication that works. thank you all again all very very helpful
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Thats great! Just work with it all. Keep good records of what does and does not work. I even went back and tried meds a second time just in case they worked second time around ie the lignocaine! If I hadn't done that I am sure that I wouldn't have had the success that I did. Will be very interested to hear how you are going.
Please dont forget the oxygen, it is such a great treatment if you find the pain is difficult to manage--and you can get it for home use.
Good luck
Heather
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
Hi DolphinLady (and Guy and Dusker), sorry you had to be here, but glad you found us. It can be very lonely wondering what's happening inside your head when no-one can tell you what it is.
As Heather said, ignore the dis-organised nature of the place, the info is good, and that's what counts. I can't offer anything new except to say that I went from being episodic to four year chronic to episodic again; and have missed my last two theoretical seasons (Spring and Autumn, but northern hemisphere). I changed my status on the basis of a couple of "shadows" thinking my season had started, but it didn't, so i've changed it back again. I've tried just about every painkiller available, as well as everything else, and settled on Topomax as a preventative and Sumatriptan as an abortive; Zomig as an alternative if the sumatriptan doesn't work for that season. I've found over the years that sometimes Imigrin doesn't kill an attack like usual- then I know that season is a Zomig season, which is a shame, because they are hideously expensive here in Russia (no generic version).
One piece of information that is missing from the panel on the left is that you should drink water until your eyeballs float (it's missing because some septics like making money off misery). basically you should drink a glass of water every time you pass a tap. HOWEVER, if you have RENAL FAILURE and must MANAGE YOUR WATER INTAKE, DON'T DO THAT!
I wish you the best of luck, DolphinLady. Don't give up hope. You're obviously strong- you've endured four years not knowing what was wrong. Now you do, and with the collective knowledge here we'll work a comfortable solution for you.
cheers peter.
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Guy

(Member)
From: Perth
22 total posts
Currently suffering :(
Hi DolphinLady, Dusker, SaintPeter,

Just a quick message to advise that, now I am a chronic sufferer, I am off to the Doctors tomorrow to discuss Topomax any advice?

Whilst this appears to contradict my previous recommodentation in regard to treatment - Verapamil/Nasal Imigran - I do have to say that this has worked well for me in the last 4/5 years as an episodic sufferer of more than 18 years, and even now I feel reduces the intensity of pain during a cluster headache attack.

However, the medication is no longer stopping the attacks - which is now seriously starting to impact on my ability to work - forget about after work (evening) life, that went months ago, but still positive I can beat it.

Does anyone have any input/exprience on the invasive procedures (operations) available and their effectiveness?

Keep Cheerfull.

Regards
Guy
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
G'day Guy, good to see another Sandgroper here, i'm from the hills, originally . Well, not really so good to see you here, but you know what I mean.
Re: Topomax; I am the same as Dusker, 100mg twice a day. Be warned it will knock you silly to start with. Riding your bike etc is a no-no until you get used to the new medication. I am not a fan of nasal Imigran- i've only ever used tablets,but i've found that some seasons I don't respond to Sumatriptan, so I swap to Zolmitriptan. One or the other always has worked.
My input, based on written reports only, and zero personal experience, is that none of the invasive procedures are long term effective. I stand willing and open to being shot down in flames on this, but as the root trigger for CH is not yet isolated, so any invasive procedure is a stab in the dark (pun entirely deliberate).
I'm also a bike rider (not in Russia though) although i've not had the chance to try any older Brit stuff. I tried to look up the Swiss races you talked about,but didn't have much success. Interesting though. Good luck today, and be careful if you start on Topomax.
cheers Peter.
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Guy

(Member)
From: Perth
22 total posts
Currently suffering :(
G'day SaintPeter, Dusker,

Hope you are both well and CH free. This thread may well be dead, and apologies in advance Dolphin Lady for Hijacking your original posting, but thought I would respond to SaintPeter's last posting anyway.

I have been on Topamax for a month now and as you advised I felt pretty crook for the first couple of weeks, however, still only on 50mg a day 25mg in the morning/evening so a snifter of a dose compared to yourselves + 240mg verapamil

All has been great for 4 weeks (apart from the initial side effects). No CH's.

However, Wednesday this week I got a mild CH on the right side, followed by a more significant CH on the left side on Thursday. On both occasions I took nasal imigran which did appear to abort the headaches such that both lasted only about an hour.

However, I would appreciate you considered opinion on the following points:

1) As a previous episodic suffer, where a bout started on either the left or right side and remained there until the bout finished; and as a chronic sufferer since April last year where all my CH's have been on the left side.

Is it usual for chronic sufferers to have CH's that flip/flop from one side to the other, as this has never happened to me before?

2) Do you think I should see my GP about increasing my Topomax dosage or wait a little longer for the full effects of the medication to kick in which I believe can take up to 3 months?

3) If the dosage is increased have you found that the side effects, after the initial lower dosage experience, reappear again until your body once again acclimatises?

SaintPeter and Dusker, as moderators, I am in the process of composing a very positive but private message to you both in regard to some new information that I have, although, it may not be new to you smile

May long you be CH free

Kind Regards,
Guy
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Guy

(Member)
From: Perth
22 total posts
Currently suffering :(
SaintPeter, Dusker,

In regard to my last posting I am just going to hold sending that private message until I can confirm the facts.

Cheers
Guy
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
G'day Guy, my apologies to DolphinLady too for the hijacking. Yes, you will have an acclimatisation period when you increase Topomax dosage, but it will not be as dramatic as when you first started taking them. ( I was very much reminded of my college days, if you catch my drift ) I would ask about increasing the dosage now, as you have had relief which has now waned.
I went from episodic to chronic and back to episodic, but have only ever been left sided. I have heard of people going from left to right, but not within a bout.

Good luck, and i'm looking forward to good news icon

Cheers Peter
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stevek

(Member)
From: Middleton
33 total posts
Not currently suffering :D
Guy (@14 Jan),

Not sure if it's normal but being a chronic sufferer (or maybe now episodic hopefully) I have had CH on both sides and once on both at the same time. They tend to stay on the same side until a couple of days break (end of an episode?) , then maybe switch sides. I "prefer" the left for some reason. icon
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