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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Questions from a new sufferer.
        
(Message started by: Mr_Sonny_Dickens on Jul 14^th, 2003, 1:26pm)

Title: Questions from a new sufferer.
Post by Mr_Sonny_Dickens on Jul 14^th, 2003, 1:26pm

I was recently, last week, diagnosed as having CH. About 2 months ago, I was diagnosed with Graves disease(hyperthyroidism). My Dr. placed me on Propranolol and Methimazole. Is there in any possibilities that my CH is caused by my recent medical problems?

*crosses fingers*

Title: Re: Questions from a new sufferer.
Post by BillyJ. on Jul 14^th, 2003, 1:52pm

Hi Sonny,
Welcome aboard,sorry you have to e here.
1st-take the cluster quiz to be sure the diagnoses is
correct,or tell us about your HAs and we'll give our
opinion although we are not doctors,most docs don't
know shit about clusters.
2nd-Propranolol is a beta blocker.A very few people
have reported it as being helpful for clusters.Verapimil
-a calcium chanel blocker-has been much more succesful
in controling clusters.
3rd-sorry I doubt that your other medical problems have
anything to do with clusters,if they are not actualy
clusters,and I hope they're not,then yes,thyroid
problems can be related to some types of HAs.
Pain free wishes to all,
Billy

Title: Re: Questions from a new sufferer.
Post by Mr_Sonny_Dickens on Jul 14^th, 2003, 3:17pm

Thanks Billy. I'm 32, but what you have here is a scared little boy, lol. I've been reading some of what you guys have written and am really nervous that this is something that I have to live with for the rest of my life. I was having a real doozy when I typed my first message. I'll say k7 at least. I'm really running around confused here and I know more than likely I'll have another tonight.

Title: Re: Questions from a new sufferer.
Post by cbolony on Jul 14^th, 2003, 4:21pm

Mr_Sonny_Dickens you can get a bag of ice and put it over which ever side you have your ch on and get a bag of ice and put it on the back of your neck the side of your ch.You can go into the shower run hot water or cold on the side of your ch.I can not tell you the other stuff i did because you will think i'm nuts.Right now i'm on verapamil and depakote.I take imitrex injections to abort ch.I hope this helps you a little.

Title: Re: Questions from a new sufferer.
Post by Mr_Sonny_Dickens on Jul 15^th, 2003, 8:40am

I doubt if I'd think you're nuts, lol. I was wishing I could scoop out my eye socket. I'll try the shower and the ice while I'm at work. I'm glad I found you guys.

Title: Re: Questions from a new sufferer.
Post by nimrod on Jul 16^th, 2003, 4:00pm

Hi Mr_Sonny_Dickens

I've found oxygen to be the best abortive treatment.
for me it kills every attack within a few minutes. I've been suffering from ch for over 3 years and found nothing else as effective.

try using 100% medical oxygen at 8-10 liters/minute for a few moment and relief should be felt very soon after.

Hope you feel better.

Title: Re: Questions from a new sufferer.
Post by Mr_Sonny_Dickens on Jul 16^th, 2003, 4:02pm

I go to the Dr. Friday, so I'll ask about the ogygen as well. Thanx.

Title: Re: Questions from a new sufferer.
Post by smfaison on Jul 16^th, 2003, 6:31pm

I too am on Verapamil and Depakote. I was still getting the headaches. So my doc put me on something called Bellaspas, I think also known as Bellergal, which is ergotamine and phenobarbitol. Except for one headache from hell that I got after mowing the yard in the noon heat, I have been pain free. Hope this helps:)

Title: Re: Questions from a new sufferer.
Post by Nathan on Jul 16^th, 2003, 8:09pm

hi sonny,
hate to break it to you, but if do in fact have ch, your in for the worst ride of your life. the docs will try med after med after med confident every time that it will work, only to disapoint you when it doesnt. its true what some of the others are saying though, oxygen via face mask is about the best thing out there but everybodys different when it comes to clusters. depakote works for some, not others. and so on and so on. just one personal note, when they suggest topomax, tell them to save that one for last. its a nasty little drug with really fucked up side effects. just my opinion. good luck and keep us posted! ---N

Title: Re: Questions from a new sufferer.
Post by Svenn on Jul 17^th, 2003, 10:39am

Hi there friend

Welcome to Clusterville

A BIG hello from the land of the vikings "Norway"

Here you are among the best friends EVER on this globe.

This is my coctail

Verapamil Retard 120mgX5-7/daily during cycle 3 weeks after last hit tapering down with 1 verap every 3/4 days until you are on 1 a day.1 a day for another 2 weeks you can decide to quit the verap or take 1 a day.Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 70-60-50-40-30-20-10-5mg every 3/4 day
This work fine for me

The very best from Svenn

Title: Re: Questions from a new sufferer.
Post by Tessa on Jul 19^th, 2003, 8:25am

Sorry to hear about you diagnosis, I have had CH's for about 17 years and was once diagnosed with the same thyroid disease. Mine, however, was a nasty side effect from the Paxil my doc had me on. I gained about 75 lbs and did not feel like getting off the couch most days. The docs told me I would have to be medicated for life and my thyroid would never function ever again. Another batch of stupid ass doctors. Once I disontinued the paxil, my thyroid started working immediately, I lost all the weight in a matter of weeks and my thyroid started to function normally. That was the end of it...
Now the Cluster, that's a whole new horrifying ballgame!
Best advice I could give, definitely seek a second diagnosis, allot of doc's use this diagnosis frequently when they can't find another excuse, for example, a friend of mine was diagnosed with clusters, and for a year he tried all kinds of different treatments, and to find out, he had a cyst in his sinuses that had to be surgically removed. If you get a definite diagnosis, the oxygen and imitrex is the most successful thing for me. Get script from your doc for O2 at home set at 8-10 liters with a rebreather mask. If you get them within minutes of the onset it will ususally abort. I still have prblems with ones that start in my sleep(too late for the O2) and not getting the O2 into me quick enough. But the 80% of the time it does work it is well worth it! Find a doc knowledgable of clusters! Most know nothing about them! I admit, my pain doc is pretty ignorant of clusters, and he has admitted I probally know more than he does, but he gives me what I need to manage them. To me that's much better than going to a doc that pretends to be able to cure you and puts you on so many meds you can't walk straight! I did that for years! He's the best option for me in the area I live in. Good Luck!