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Title: I need Suggestions Post by td on Jul 21st, 2003, 2:04pm Please help, I have been reviewing your web site for the last year looking for tips suggestions and support. I myself don't suffer from cluster headaches but from Chronic Daily Headaches. Right now I am at a dead end, here is little of my history, I need don't know what else the docs and myself could look at. Anything would be great. I just want I way to live somewhat of a normal life. Thanks Tammy I have had migraines since I was ten and was always able to deal with them. minus the occasional migraine which was managed with Tylenol extra and Metoclopramide for the really bad ones. But this spring something changed. At the end of May I had a really really bad Migraine. One of the worst in 10 years and from that day on I have had pain, classic to a "migraine pain", on a daily basis. Some days are not as bad as other but some days I can not get out of bed. After my third trip to the ER I got in touch with a new neurologist who at first thought I had rebound headaches. So I stopped all meds related to rebound. Headaches still where present. I was given Propranolol, then Sibelium, then Topamax, (I already take Divalproex Sodium for my Epilepsy), then Indomethacin, and then on Amitriptyline (of which I have had night terrors from in the past and was taken off them). Nothing has stopped the headaches. I have tried O2 as well. My CT scan came back normal in September but my Spinal Tap show a large amount of protein (.8, normal is .2to .4) in November, Also had to have two blood patches afterwards because of the massive headache that caused. I have even gone had Botox treatments in May. Little help except for the facial pain has gone down a lot. My MRI in Feb. also came back somewhat normal; My neurologist is at a loss for my headaches. At first he used the DHE to clean my system from the pain meds (3 shots a day for nine days) thinking it was rebound then he thought it was Hemicraia Continua, a type of daily headaches but the Indomethacin didn't work. Now with the high protein in my spinal fluid with no reason he is at a loss for why I am still having the headaches and what that high protein count means. I had a nervous breakdown of sorts and was put on Paxil to help not to completely lose it. I have now not worked since November because of the headaches and the depression from it. The Headaches themselves seem to have a cycle to them if you want to call it that. For about 1 to 4 days a month I don't get a headache. Medications Metoclopramide: 10 mg IV first few visits to ER and also in pill form as needed with DHE Chlorpromazine: Demerol: Propranolol 20 mg x2 per day Sibelium (Flunarizine) 5mg x1Not a nice drug, VERY DEPRESS FROM THIS DRUG. Dihydroergotaime 1mg - Started Aug 1 - 3 inj per day for nine days then as needed usually doing 2 to 3 injections per week at the beginning, -started to become less and less effective but the Topamax also took the edge off the pain around November December so I did use it as much but increase the amount used again in January and February but by May it would only work for about 1 hour. Topamax- At least it took the very intense headaches away but it does make me more tried and want to sleep more then before. Imitrex - 6mg injection-Stop working for me long time ago and it still doesn't work but we had to try it again. Indomethacin 25 mg x2 and then 3x twice a day, - thinking it was an Indomethacin responsive headache. No such luck, even tried it twice to make sure, Used Ranitidine 150 mg to help protect my stomach. Amitriptyline , Zopiclone 7.5 mg to help me sleep Oxygen w non rebreather 12 ml for 10 min as needed Didn’t really work Tanacet – tried – too hard on the stomach Centrum Protegra -started Aug 02 to march 03 Calcium 333 mg x2 per day Magnesium up to 600 to 800 mg per day Nufem Standardize Black Cohosh Extract I have gone for deep muscle massage, relaxation massage, hair shampoos, (those are very relaxing) but the headaches come right back. I will be going for acupuncture to see if that will work. I have searched the web for hours on end looking for things that may be the answer to these headaches. I have stopped eating processed foods completely. I know I have to quit smoking, and I did for two months at the beginning but it didn’t really help but I am going to be quitting again. I have also purchased an air cleaner for my house. I went for Allergy testing and they said that I am allergic to weeds, dust, mould, and tobacco, and that to get a hepa filter installed. So I did. Had sofa and chair cleaned. Try to maintain dust free environment in house. Please help. Tammy |
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Title: Re: I need Suggestions Post by Ted on Jul 21st, 2003, 2:21pm Tammy. Sounds like you're not doing too good right now. I'm sorry to hear that. This is a website for specifically for just clusters and we're trying to keep it that way so we don't get lost in the shuffle once again. So we won't be able to help you with your questions. There's another website that would probably be better for you to post this at. They deal with all types of headaches. It's at http://www.headachesupportgroups.com/ Just copy and paste your post there and you should get lots of helpful answers. |
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Title: Re: I need Suggestions Post by td on Jul 21st, 2003, 2:43pm Thanks, I don't think I had found that link before,but I will try it, do you know if many people are on this web page? The others that I had found were either outdated or no one used them. Tammy PS, I understand you guys wanting to keep apart, I am just at the end of my rope looking for more options. |
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Title: Re: I need Suggestions Post by Ted on Jul 21st, 2003, 2:47pm It's a pretty active site. Lots of people from here are there too (as a matter-of-fact, that site was started by Elaine from here and is maintained by her and Mast from here too). It's also where people from here go when they want to use the chatroom so that part of it is pretty active too. |
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Title: Re: I need Suggestions Post by Svenn on Jul 22nd, 2003, 2:54am Hi there 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 |
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