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Cluster Headache Help and Support >> Cluster Headache Specific >> Need suggested remedies to discuss with doctor. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1233247121 Message started by urothane on Jan 29th, 2009 at 11:38am |
Title: Need suggested remedies to discuss with doctor. Post by urothane on Jan 29th, 2009 at 11:38am
Hello Clusterheads,
This fall I was technically diagnosed with Paroxysmal Hemicrania, which is a cluster headache that never goes away. In the last 4 years I have had just a month of pain free days without drugs (this summer). I have a consistent 1-2 (kip scale) headache all day on my left side accompanied by the normal cluster symptoms like runny nose and eye dropping. I feel lucky if this is what I have all day. However most days I have 3-6 spikes between 7 and 9 on the kip scale. My internist tried me on Topamax and several anti-depressants. If they worked, they cut out the bottoms (1-2) and top (8-10) and left me with a constant headache in the middle. He referred me to the neurology department at the Medical College of WI where I was properly diagnosed. They have tried me on the following items: O2 - no effect Indocin - Mildly effective for first two weeks and then no effect Imitrex, Treximet, Frova, Amerge, and some other Triptan based oral drugs - If they worked I also suffered an acid trip. Nothing quite like hallucinating at work. The doctor suggested sticking with these and taking an anti-psychotic as well. Not cool. Imitrex injection - No effect (and insurance won't cover) Nortryptaline - I have been taking 50 mg daily for just over two months and had only two headaches over a 3 with most days being completely pain free. That is until 5 days ago. For the last 5 days I have endured a headache consistently between a 5 and 9. Nothing helps now. I continue the current drugs. I have an appointment with the neurologist on 2/13 and need to take in some ideas because the department there has limited experience with my condition or cluster headaches in general. And they are the best place to go in the state. In the last month things that have changed in my life: I went to a completely vegan diet from a lacto-ovo-vegetarian diet I started exercising again, but limited it to light cardio and yoga. I don't drink, don't smoke, and cut all soda out of my diet over a year ago. I drink a gallon of water a day now. Are there other legal options left that I can discuss with my doctor? If my only options are not legal, I will discuss those with my brother instead. Thanks for any and all help. Greg |
Title: Re: Need suggested remedies to discuss with doctor. Post by QnHeartMM on Jan 29th, 2009 at 11:41am
my husband Guiseppi takes Lithium in cycle, on a graduated increased amount, up to 1200mg per day. It works as a preventative. Perhaps discuss that with your neuro.
Also, are you using the o2 the way described in posts here? You can have any outside air and you want a pretty high flow. There's alot of info to the left that you might want to print out and take with you. |
Title: Re: Need suggested remedies to discuss with doctor. Post by urothane on Jan 29th, 2009 at 11:54am
When I had the O2, it was the set up they describe here at 15lpm. I actually tried it three times. The first two had zero effect, but the third I felt a little worse.
I found this site after my first visit to the neurologist and did take some of these pages with me as she wasn't as familiar with clusters as I would have liked. I guess something else to note, is that I have always had strange reactions to medications. Most "downer" drugs make me hyper (like codeine). My internist thinks I have Malignant Hyperthermia and that is the cause of my reactions to medications. The neurologist thinks the headaches and the malignant hyperthermia may be related. Thanks for tip on Lithium. |
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