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Cluster Headache Help and Support >> Cluster Headache Specific >> My diagnose http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1274952639 Message started by RuVa on May 27th, 2010 at 5:30am |
Title: My diagnose Post by RuVa on May 27th, 2010 at 5:30am
Hi all,
I was diagnosed 2 and a half years ago, around Christmas. My first CH cycle. 2 weeks of pain, high on paracetamol and codeine, no change. Then my doctor tells me to go visit a neurologist because she suspects I might suffer from something called CH. I do my story and without a blink, scans or blood investigation, my neurologist says I suffer from CH... Although, with a twist... I suffer from migraines regularly as well, it seems that's the twist. I can feel it lingering, it comes up softly. 90% of the times on the left, sometimes on the right side. When it's on the right side it's far worse though. I take a paracetamol with codeine, and when it's on the left side it works within 15 minutes and I'm as good as new. CH, I have all the symptoms... from no pain to KIP 7 at least in 5 - 10 minutes. Horner syndrome on left side (always left, only had it on the right side once) attack lasts 45 minutes to 1h30 Face temperature rises a lot Tearing eye Blocked nosehole on left side I can take any kind of painkiller, nothing helps... However... never during the night, I never wake up from it, it might happens late in the evening before I go to bed though. I don't mind light or sound, I just want to be left alone, I can't stand answering to people. The effort to speak to someone is a huge pain. I lay down to try to stay as calm as possible, but occasionaly want to strike down at something. The neurologist says that suffering from both migraines and CH is pretty rare. It's either one thing, ore the other, but not both... Ok, I don't have both during a CH cycle, but sometimes I do have migraines, sometimes I have a CH cycle... Apparantly that's not normal. But what strikes me is that without any investigation, this guy diagnosed me as a CH patient. He said I was lucky to have had a doctor who directed me to him because so many patients are misundertood and get misdiagnosed for years. He prescribed me topamax and imitrex and I didn't get another cycle until the next Christmas. I called him back then and I could visit him the same day. He upped the topamax dose. That's when I took my first imitrex shot. Goodness was I happy that my wife was at home. I don't know what's in an imitrex shot but I felt like I was dying. I was off world or something... my whole body felt like it was floating. My head felt like it was not attached anymore and it felt like I was sooo relaxed so it seemed I wasn't even breathing anymore. It was a very strange and scary experience. But, the pain was gone completely so I seriously thanked the heavens. I had to keep the topamax dose up at 75mg but since it didn't occur during the year I lowered the dose to 50Mg and upped the dose to 75Mg 3 weeks before last Christmas. I had 3 attacks around last Christmas, that's it. I actually had a 2 week cycle starting 3 weeks ago again. Maybe because I decided to stop taking topamax because of the side effects. That was the worst cycle of all. An attack almost every day. the most painful ones so far. I didn't know of all you people, of all the kinds of medication like the oxigen treatment. I never read as much on the internet about the symptoms as I did now so I was thinking back then... What the hell... Why am I taking topamax... all these stupid side effects... is this neurologist even for real? No investigation, nothing... just... you have CH, take topamax... but now that I'm reading all this, all these stories, all this information, I'm starting to take it all in. this is all for real. I do have CH, it is real, it exists and I have it. I better start to live with it. I don't know if topamax is my thing or not we'll see. But ok, I'm part of the CH community now. I have a lot of respect for all of you because it's hell. And I'm even lucky. I have never even had more than 1 attack a day and I don't wake up during the night. CH's and supporters, please keep finding the strength. There's more to life out there! |
Title: Re: My diagnose Post by anthony g on May 27th, 2010 at 7:34am
hello and welcome! sorry for your pain but u found the right place! I too was recently diagnosed with chronic migraine/ cluster mix! My specialist diagnosed it as "hermicrania continua" It is a bit more complicated to deal with but you can get some control on it! I am currently on 150 mg of indomethacin. i had opcipal nerve block injections last week that helped me out alot. Yes, it does make the battle a bit harder having both migraine/cluster mix but there had been a few people on this site with both! Stick around my friend you will learn soooo much! p.m.me if you need any more info on the hermicrania continua.
best wishes anthony |
Title: Re: My diagnose Post by RuVa on May 27th, 2010 at 8:54am
Hi Anthony,
thx for your reply. I'm looking forward to gathering some experiences, thoughts and info. I don't know the medication indomethacin, but I have heard about nerve blocking medication. If it works like I understand it does I think it is a lifesaver or something? Does it block out all of the pain and does it kick in fast? Well, maybe I should pm you :) I have not heard of that term before (hermicrania continua), the neurologist didn't mention it to me. CH has been episodical for me so far. Migraine comes and goes but never too bad. I can have it like 1-3,4 times a month or not at all. I'm sorry, chronical means it must be very tough for you! Take care! |
Title: Re: My diagnose Post by Guiseppi on May 27th, 2010 at 9:39am
Welcome to the board! For the first 20 or so years I never suffered the night time attacks either. Once I got to sleep I was safe. Then in my 40's I started getting the wake up attacks! One thing about CH, it changes....a lot!
Do look into oxygen treatment. Read the oxygen info link on the left to get an understanding of how simple it really is. It is amazing how fast you can stop an attack in its tracks, generally less then 10 minutes for me. There are 2 other popular prevents you can talk to your doc about if Topomax is tough on you. Many swear by Topomax many swear AT it because of the side effects! Verapamil and lithium both have a loyal following on the board as prevents. Glad you found us! Joe |
Title: Re: My diagnose Post by Karla on May 27th, 2010 at 10:26am
Hi, I suffer from both chronic ch and migraines. My drs never said anything about it being rare or anything weird. I wouldn't worry to much about having both. I tried indomethacin 50mg. It kicked it fast like in 3 days I had results. It worked for 5 months and then quit working. I have tried it several times since then and no luck getting it to work again. But it is suppose to be hard on the stomach but well worth it if it works for you. Good luck.
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Title: Re: My diagnose Post by RuVa on May 28th, 2010 at 2:04am
Thanks all for the replies.
There is a lot of information in these replies so I will take the time to read through those more carefully and slowly and look up what I need to. It is amazing how in such short notice I have already read so much more about possible medication here than the doctors have told me about in over two years. I am eager to learn about this and talk about it with my neurologist. It's so great, I don't feel dumb or silly anymore talking about this. Sometimes I get this feeling that when you talk with doctors, they think you're either incredibly weak or what you're saying about how you feel when you take the medication can not be true. Btw, I am 26 years and I live in Belgium, Oost-Vlaanderen. Imitrex shots are pretty expensive. I need to get permission from a certified doctor by law to get the shots at a reduced price at a pharmacy. They cost about 50 euro's per 2 ampules. The permission stays valid for about 1 year and for a maximum of 14 ampules or so which is rediculous. For topamax I have permission until 2014, but I take topiramate now, that's cheaper. the prices here are very ok with the reduction. I guess I should take this to the medicine forum. Thanks all! |
Title: Re: My diagnose Post by RuVa on May 31st, 2010 at 3:32am
Hi all, back after the weekend.
Nice, able to relax and have a calm weekend. Ready to dig into all the information here again and ask some questions. I hope you all have been doing wonderful as well. NO visits from the beast I hope! |
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