New CH.com Forum | |
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Cluster Headache Help and Support >> Getting to Know Ya >> Introducing myself & a Question. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1254635290 Message started by Kassi on Oct 4th, 2009 at 1:48am |
Title: Introducing myself & a Question. Post by Kassi on Oct 4th, 2009 at 1:48am
Hi my name is Kassi. I am 18 years old and have just recently been diagnosed with cluster headaches. I've had 'migraines' since I was 14, but the doctors would only give my tylenol and things like that as a medication. When I finally researched migraines, I realized that I didn't suffer from migraines at all, but that I seemed like more of a cluster headache sufferer. I've tried a few medicines since. Zomig, Imitrex Nasal, Propanolol,Caffergot/Ergotamine, and Ibuprofen 800. Right now I take propanolol for long term use, and Imitrex and Ibuprofen as preventative. Right now I'm just episodic.
I have a 2 yr old, and have been married for a year. Sometimes trying to deal with CH gets overwhelming and I just feel so depressed. I'm so happy that I've found somewhere where people understand. I think that my husband sometimes thinks that it's just a headache. I was wondering if anyone has any experience with a calcium channel blocker compared to propanolol? My doctor has been pushing me to try a CCB, but I'm nervous about side-effects and effectiveness. Any help would be appreciated. Kassi |
Title: Re: Introducing myself & a Question. Post by Ginger S. on Oct 4th, 2009 at 8:24am
Kassi Welcome!
I take verapamil a ccb and the only side affect that bugs me is swollen ankles ::) and that's not as bad as a CH hit ;) All I can say is try it, if you don't like it or if it doesn't work for you, you can always go back to something else that did work. Have your husband do some reading here on your condition, maybe then he'll be a bit more supportive and understanding. In the mean time... I'm Wishing you lots of PF time to play with your little one! |
Title: Re: Introducing myself & a Question. Post by Charlie on Oct 4th, 2009 at 3:20pm
Welcome aboard Kassi but I'm sorry you are having to deal with this horror. I too took my share of Propanolol but I was never impressed with the stuff. Any perceived result was likely just timing of the ending of cycle. My hits disappeared some years ago so I didn't have experience with the newer treatments....not that I'm complaining...
I had some good luck with this however: Dr. Wright’s Circulatory Technique What follows is a technique learned from my neurologist: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. I hope this technique is helpful and I wish you the best of luck Charlie |
Title: Re: Introducing myself & a Question. Post by Lottie on Oct 5th, 2009 at 1:40pm
Have you tried O2 as an abortive? If not, read the oxygen info marked in yellow on your left, and take the info to your doc!
Lottie |
Title: Re: Introducing myself & a Question. Post by Callico on Oct 6th, 2009 at 6:24pm
Welcome aboard!
First of all I would recommend you find a Headache Specialist who is knowledgeable about clusters. I don't think you hve very good care from the little you have said. Calcium Channel Blockers work well for some of us, primarily Verapamil. It was not totally effective for me and I didn't like some of the side effects I got with it, but I react strangely to a lot of meds. A year or so ago I read up on Kudzu and replaced Verap with it and quite successfully. In your reading here I would suggest you go to the "old m-board" button on the left and look through it for a very long thread on Kudzu. It was started by Nani, and is excellent. Sorry I dont' have the time right now to get you the link. I'm supposed to be working! :-[ Keep reading. There is a tremendous amount of info for you to absorb. Feel free to ask questions. No honest question is a dumb question, although I have been known to give dumb answers. :D There are a lot of folks around here who know a lot more than me who can give you smart ones. One last thing, OXYGEN. I can't recommend it highly enough. Jerry |
Title: Re: Introducing myself & a Question. Post by Kassi on Oct 6th, 2009 at 7:42pm
Thank you for the information. I appreciate it. Next time I go to the doctor I'm going to talk to her about oxygen and the calcium channel blocker. Thanks also for the support. Does anyone know of a website where I can find Headache Specialists or Neurologists with experience in CH's?
Also, to clear up the misunderstanding, my husband really does support me, he's been there when I'm up at 3 in the morning crying and pacing, I just think he misunderstands how seriously this situation takes its toll on me. He doesn't know how helpless I feel when I have a cluster while working and I have to come home, or while we're trying to go on a date and one hits me. It's just so depressing at times, and I don't think anyone except for people that experience it can really understand. But, other than that matt is a really good guy. |
Title: Re: Introducing myself & a Question. Post by Skyhawk5 on Oct 6th, 2009 at 7:58pm |
New CH.com Forum » Powered by YaBB 2.4! YaBB © 2000-2009. All Rights Reserved. |