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Title: Newbie here who feels like........ Post by gammavh on Aug 11th, 2002, 7:04am weeping. There are others out there who understand!!!!! I never ever thought that I'd find anyone who had the same beast as I did. I live in England and have had these damn things for about 12 years. I used to live in CA and AZ and came home about 2 years ago. It took years for the doc's to decide what I had wrong with me. I finally found a lady neuro in AZ who belived me!! I wasn't mad. I didn't need a shrink!! Trying to see a neuro here is like trying to get blood out of a stone >:(. I take Zomig and that stops them in about 1/2 hour most of the time. But can only get six at a time. I souldn't complain. They don't cost me anything but when I'm in the the begining of six month once or twice a night episode, six at a time isn't enough. Right now this weekend I'm out of meds. :'( I'm going mad. Waking up about an hour after I go to bed, holding my head and crying isn't something I look forward to. Tomorrow I'm at the doc's and see if there is a headache clinic in the area that I can be refered to. And if I have to get down on my knees I'm going to get more than six Zomig!!! Thank you, thank you who ever started this site. Here's wishing you a beast free night and day. gam |
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Title: Re: Newbie here who feels like........ Post by Svenn on Aug 11th, 2002, 12:30pm Hi gammavh Welcome to Clusterville First of all i`m so sorry that you are fighting this battle. If i read you right you are using zomig,and tell us that it helps within 30 minutes. Have you ever tried oxygen or imitrex-shots? The shots should give you relief within 7-9 minutes Oxygen alone at 10lpm relief within 12-15 minutes Finally i would like to add my "miraclecure"for breaking a cycle. Verapamil Retard 120mgX5-7/daily during cycle Oxygene alone at 10lpm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree Prednisolone in high doze for 10 days 80mg then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway Your friend Svenn |
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Title: Re: Newbie here who feels like........ Post by markdavid on Aug 11th, 2002, 1:44pm Hi Gam, Welcome sorry you have to be here, I wrote you this morning, god knows where it ended up tell ya about that in a lil. I have been suffering 17 years worth of cycles which not long compared to some , I haven't had any luck till this year Axert has worked but as my cycle always goes , slow at first then 1 to 3 attacks a day till I am good and tired , after a month 5 to 10 day and night 7 to 10 on kip every cycle 2 to 4 month cycles. I have just started Zonegran100mg caps 3 times a day and Oxygen . The caps take about 7 to 12 days to fully set in but I have noticed some positive results the first day. the first week I had about 10 - 12 attacks oxygen took care of quickly and last week, 3 monday and 3 thursday again oxygen ...... I am in powerfull stages of my cycle so all is going very very well we will see about next week... NOBODY has commented on this drug yet but my nero who gave it to a 7 year chronic who said it was like magic..... side effects are at times a pain in the ass at the same time can be entertaining... tiredness and confusion...poor Svenn must think I am a basket case, yet I am responsible for some pretty sensitive equipment . I am directly responsible for a refueling system at president George W. Bush's Ranch , and this med has got me so goofy I make mistakes on posts and bring my perfictly good p.c to the shop etc. but it works.... Good Luck God Bless Mark David |
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Title: Re: Newbie here who feels like........ Post by pjbgravely on Aug 11th, 2002, 7:49pm Try Ice, hot sauce under the tognhe,, hot or cold showers, cold place to sit. It's tough being without drugs. |
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Title: Re: Newbie here who feels like........ Post by gammavh on Aug 11th, 2002, 7:50pm Hi there Svenn and Mark, bless you both for replying. :) :) I can't take a lot of the meds bacause I've had a heart attaack. I tried O2 in AZ and it was pretty good but my Insurance wouldn't cover it. Here in England I don't know what they will allow, which is why I want to go to a pain or headache clinic. It will take me months as I'm sure the waiting list is long. That's if there is one in my local health trust. And I've found out that GP's won't give Rx's for any decent pain meds. because they just don't know enough about it. I'm on Sodium Valproate for the Migraines that I get it's helped those a lot but not the beast type headache. So here it is almost 2 am and I'm scared to go to bed. Doesn't matter what time I go to sleep I'm awake withing and hour or two with the pain. sighhhhhhh I'm lucky that my hubby says that he understands, except he keeps telling me to go and lay down in a dark room and as you all know laying down makes it worse. Still at least he puts up with it. I'm making a doctor's appointment for Tuesday to get more Zomig and see what else he has to say. Blessing to all and hope you have a beast free day and night. gam |
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Title: Re: Newbie here who feels like........ Post by gammavh on Aug 11th, 2002, 7:56pm Hi PJ, I do put ice on the back of my neck where the lump starts and I open the living room window as far as it will go. I do take Soma which is a muscle relaxer and I take them as well. More than I should I know they help me feel tired and relaxed. I tell you I'd take any narcotic at the moment and the hell with the side effects. But my chances of getting any are slim and none. LOL don't think I could handle the hot sause though.. Thanks for thinking of me. Bless you. I hope you have a beast free night and day. gam |
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Title: Re: Newbie here who feels like........ Post by don on Aug 11th, 2002, 8:09pm Svenn, That exactly my treatment. If that fails it's 2 days in the hospital on a DHE and benedryl drip |
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Title: Re: Newbie here who feels like........ Post by 2late on Aug 11th, 2002, 8:36pm damn gam,I feel terrible for ya! ch & no meds!! just hang in, you'll get relief. we all feel your pain. cover as much of this site as possible. You'll find some kind of relief. GOOD LUCK!!! ...........2late |
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Title: Re: Newbie here who feels like........ Post by Charlie on Aug 11th, 2002, 8:48pm Welcome aboard Gammavh: There's no way to explain this horror but here it isn't necessary. Good advice here and get those meds! In the meantime, give this little technique a try: Dr. Wright's Circulatory Feedback This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been very helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time for this to take hold but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. I like to keep at it a few minutes longer than seems necessary to insure success. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand Maybe it can help between meds. Let us know how you you make out. Really hopeful old Charlie |
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Title: Re: Newbie here who feels like........ Post by Ueli on Aug 11th, 2002, 10:32pm Hi gam, You might get some help in untangling the red tape of the NHS from our friends in the UK: http://www.clusterheadaches.org.uk/ PFNADs Ueli |
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Title: Re: Newbie here who feels like........ Post by vaughn on Aug 12th, 2002, 5:31am hi there.i too live in the uk and have been fobbed off by doctors for many years.eventually i demanded a referral letter from my gp.off i went to the hospital to sort out a neuro appointment happy in the knowledge that i would at last be seen by a competent doc.no such luck.i waited and waited, wrote letters got no reply.they had no record of me, didnt know who i was.i was ready to give up-on doctors, on life, on fighting this scary living hell.i had no idea what was wrong with me.i thought i was going to die.in a way i wanted to die just to escape the agony.then by pure luck i stumbled across the london migraine society,had an appointment with dr.blau and was immediately diagnosed with ch.the relief was instant, i was not alone.i am in remission so up till now have not undergone treatment.although last night my little beast came to visit-just a quick one, just to say that he is back in town and would be coming to stay with me quite soon. i will get back to you with numbers and adress of the good doctor very soon.fight the good fight.xxx |
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Title: Re: Newbie here who feels like........ Post by Svenn on Aug 12th, 2002, 5:37am I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway Verapamil Retard 120mgX5-7/daily during cycle Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree Prednisolone in high doze for 10 days 80mg then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway I also have a bad heartcondition.Had a heartattack Nov 12.But quitting the shots is no option for me.I think that the shots is Gods gift to us clusterheads. The thing that i don`t understand or found the answer to is how i after the attack has had only 9 light clusterattacks."singleattacks"And before i was diagnosed as a cronical. But so it has been said."I do not reccomend heartattacks as a treatment for cluster".Its a bit extreme for that.Dont you think? Take care my friend Svenn |
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Title: Re: Newbie here who feels like........ Post by Drk^Angel on Aug 12th, 2002, 10:12pm Welcome to the board! Sorry that the beast is drivin' white hot rivets into your head, then pulling them back out again, only to drive 'em in deeper the next time. Welcome to the family! PFDAN......................... Drk^Angel |
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Title: Re: Newbie here who feels like........ Post by JUDY on Aug 13th, 2002, 8:16am Hi everyone, I have been suffering from severe pressure in my forhead, around my eyes,behind my eyes, stuffy nose, ears clogged, dizziness and vertigo now since May. The pressure is mainly on the right side and I also get like a spasm to the right eye to where it is hard to open it up when the spasm hits. I always thought it was migraine because of the congestion. This has been going on since May and the doc said it can last for months without stopping. DOES THIS SOUND RIGHT TO ANYONE? Saw the doc last night and he said it was a combination of cluster and migraine headaches. Does this sound familiar to anyone. How about the dizziness or vertigo. Does this sound familiar to anyone. I only have these symptoms when the pressure comes. He gave me Verapamil 120 mg a day, he gave me a steroid shot last night and started me on PREDNISONE 80 mg then taper for 14 days. Please reply anyone I don't know much about this. THANKS MUCH EVERYONE JUDY |
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Title: Re: Newbie here who feels like........ Post by catlind on Aug 13th, 2002, 8:24am Judy, I've been diagnosed with both migraines and clusters. I can distinctly tell the difference between the two headaches, although I do sometimes get them both at the same time (during a cycle). My doc had me on prednisone after a 9 month cycle without a break. I was on it for 8 weeks, and it did break the cycle. Others here have used the verapamil with great success. I haven't used it and can't use alot of the meds because of other conditions. I'm on celexa as a preventative and having good luck with it. If you have clusters, the pred and the vera should help you a great deal. Ask for O2 though, after trying almost every med both preventative and abortive out there, the O2 seems to be the only thing that can help me. When you get both together, you can't sleep and all you want to do is sleep. You can't sit still but every move makes your head hurt more. It's a real rock and a hard place. Any of the triptans should do you wonders for both headache types. Cat |
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Title: Re: Newbie here who feels like........ Post by Mistory on Aug 13th, 2002, 8:46am Judy: I'm a newbie, too. I can't tell you much that will help, but I can tell you I have been through the same symptoms as you on and off (with changing seasons) for the last five years. I was treated for sinus infections (even I thought that might be it) then for migraines; alas, the medications prescribed didn't help. Mine cycle through peaks and valleys, heating up late in the afternoon every day for three to five days; on the last day, BOOM! BIG HEADACHE, dark room, ice pack, please if this is going to kill me just get it over with!!! Then it is gone, only to return the next week; this goies on for several weeks or a couple of months, then starts again. I can tell you, that although I have not yet found relief, I have found MANY more suggestions for possible relief on this website than I have ever encountered before; certainly more than my doctor has ever brought up. I intend to research this a little further, and discuss the possibilities with my doctor. I don't intend to tell her how to do her job, but who should no better what works in this battle than those who are actually fighting it? I wish you many pain free days ahead! |
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Title: Re: Newbie here who feels like........ Post by oringkid on Aug 13th, 2002, 1:19pm Judy, What you describe sounds like it might be either sinus or inner ear related. Take the Cluster Quiz on the left and see how your symptoms stack up. Have you had the obligatory ct scan or mri? These can help rule out certain things. I have atypical menieres disease in addition to my CH and menieres causes vertigo. It also tends to be worse according to your female cycle. Might want to get a second opinion just in case. Sorry you are hurting! Gammavh, Where in AZ did you live? I live in the Mohave Valley area (central west) right at the CA, AZ, NV border. Check the OUCH site (button on the left) and go under Clusterhelp>Cluster Resources>Natural Remedies to find something that will help until you can get to the Dr. Hope you feel better soon! Sherry |
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