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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello Everyone
        
(Message started by: LeLimey on Oct 4^th, 2004, 8:45pm)

Title: Hello Everyone
Post by LeLimey on Oct 4^th, 2004, 8:45pm

Hello Everyone,
Wow what a lifesaver finding this site is! I've read alot of posts and the help has been invaluable.. just knowing "we are not alone" is (for once) reassuring! I have just been diagnosed with CH after having a CT Scan last week. I was diagnosed with Coeliac Disease (autoimmune disease - intolerance of wheat/gluten) at the beginning of this year and have been on Prednisolone for that from February through to August 9th when my steroids were switched to Budesonide as the prednisolone was unresponsive for the Coeliac Disease. Within a week of switching I started getting headaches, pretty bad ones but still merely headaches. A walk in the park compared to NOW!! Since the 14th of September I have had a headache which got progressively worse for the first three days until on the third day the pain spread around my sinus area so I thought it must be sinusitis. I got antibiotics, OTC painkillers and decongestants but by the following day I was fit to stab myself to stop the pain. The severe pain lasted for a couple of hours, I can't be precise as I was too out of it to really be sure. I couldn't bear to have anyone else around me and to add insult to injury we were away for the weekend at a Hovercraft Race Meeting and suffice to say the NOISE did NOT help matters!! I waited out the week crying in pain each day in the (dumb) hope the the antibiotics would work. Finally my husband called the doctor who promptly called an ambulance and I was whisked off to hospital. I have been given Imigran which didn't seem to do anything and a combination of Tramadol, Paracetamol and Ibuprofen which although it helps through the rest of the day doesn't do much during the peak. I ave what seems to be the usual other "treats" one-sided, severely snotty, ( am considering entering nose in next marathon.. nothing runs quite like it!!) charming disposition of a grizzly.. you get the picture!! It comes everyday at the same sort of time of day and then tails off and I'm "fine" until the following morning when the whole vicious circle starts again. By fine I mean I can cope but do definitely have shadows ( And that is a fantastic description for them!)
My BIG question is steroid related.
A) Are prednisone and prednisolone one and the same? Have looked but can't find this info.
B) Has anyone else got CD and if so have the found CH is related OR has anyone else got the headaches from withdrawal of Prednisolone after a long exposure to it?
I know I'm a pain in the butt but hey, after these headaches that has to be a step in the right direction surely?!! LOL
Helen

Title: Re: Hello Everyone
Post by Charlie on Oct 4^th, 2004, 8:59pm

Welcome aboard and sorry for what you're going through. I would hope that as a result of your having coeliac disease that you are off wheat and substituing lots of rice, corn, and other things. They say buckwheat is ok though. It's not easy. I don't think it has anything to do with CH. Clusters on top of this: What a crappy break. >:(

If you stick around, you will find some good ideas for dealing with this horror though and let us know how you're dong.

Charlie

Title: Re: Hello Everyone
Post by LeLimey on Oct 4^th, 2004, 9:15pm

Thank you!
The reason I asked about a connection to CD was that in all the bumf you get from the hospital when you are diagnosed with it they state "headaches" can be a symptom. Yes I am completely off all wheat, barley, rye etc and the only hardship was giving up licorice! Actually its quite disturbing finding out some of the things that DO have wheat in that you would NEVER suspect! Apart from the fact that my innards won't heal voluntarily its not a problem (cos I won't let it be!) You have to be positive or you end up with no life at all and I'm having to do without quite enough as it is! Damned if I'm wasting the "good" parts of the day I do get! I do suffer alot with bone pain and have over the years got really good at concentrating pain away but this is the first time I have ever had to cope with anything like this and you just can't think never mind think it away (ermm.. hang on.. think I'm preaching to the converted here!) At the moment Im planning a nice makeover for my house involving padded walls so I won't dent them when I bang my head against them.. cracked plaster is just so unsightly! Thanks for the support!

Title: Re: Hello Everyone
Post by thebbz on Oct 5^th, 2004, 9:03pm

Sorry you got double the trouble. Just hang in there and dont let the beast have his way. ;;D
BB

Title: Re: Hello Everyone
Post by floridian on Oct 7^th, 2004, 8:34am

Prednisone are prednisolone are pretty much the same thing - the slight difference makes one better for injection and the other better for tablets, but in the body, they end up as the same molecule.

I am aware of no research on celiac disease and cluster headache. I believe that celiac is not "the cause" of clusters, but if you have both conditions, not treating the celiac disease with the appropriate diet could make your cluster headaches worse. Celiac disease is an allergic reaction that results in the activation of the immune system (especially T-cells). A similar activation of the immune system occurs in clusters, although it is not identical, it could spill over from celiac to affect CH. Untreated celiac disease also increases the risk of autoimmune thyroid disease and lymphoma (due to immune activation), so it is important to avoid ALL gluten as your doctor has undoubtedly told you.

Title: Re: Hello Everyone
Post by LeLimey on Oct 7^th, 2004, 5:01pm

Thanks for that! At least it gives me some more questions to ask next time I see the doctor. I didn't think the coeliac would have caused the clusters but I was wondering about the medication angle. I'm very lucky in that I have a superb nutrionist at the hospital and the coeliac society here is very helpful in producing lists of GF "normal" foods. I only eat GF bread etc and I am very careful about cross contamination. I also don't have any of the endomysial antibodies anymore which suggest gluten has been ingested so I must be getting SOMETHING right at least!!