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Title: Desperation has set in! Please Help Post by athos12 on Jan 19th, 2003, 3:55pm It has been ahwile since I have posted. I have been a cluster suffer for 16 years. They have been increasingly getting worse. For a long time they have been clinically chronic 3-4 a month. With in the lase month they have increased to 4-5 times a week and I am losing my mind. I am on topamx right now and they just put me on prednizone. I feel like I might as well be taking m&m's. I am a grown man of 34(who looks 40) who sits and cowers in the corner like baby crying his eyes and wish's it would all end... There are times if it were not for my family I would have already ended it..... I learned to deal with 3-4 a month but this almost everyday thing is killing me from the inside. My wife told me the other day that I am not the same person that I used to be... No shit I fell like a walking zombie with little sleep and the continuing fear of another attack. I got laid off because of this as well...... What they hell do you do to survive when it gets this bad? I have had every damn test screen poke prod, you name it. But I am losing it and losing it fast. Depression has set and they are treating for that now as well because of the pain. I don't know where to turn! Thanks for the vent. Athos |
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Title: Re: Desperation has set in! Please Help Post by cootie on Jan 19th, 2003, 4:26pm athos12.....Hi....You've made the 'rite' turn here dude...pain don't bring the best out in anyone....read up and you'll learn alot on here and maybe come up with a combo that works for you...am sure sumone will be able ta help ya here....am wishin ya good luck....Pam |
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Title: Re: Desperation has set in! Please Help Post by Slydog on Jan 19th, 2003, 4:29pm Athos Your logo to the left says it well. Connor is how you keep going. Have your wife come to this sight with you and maybe it will help her understand why you are different lately. Wishing you PF times and vent all you want if it helps. Sly |
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Title: Re: Desperation has set in! Please Help Post by cbolony on Jan 19th, 2003, 4:55pm did you every try imitrex injection they help me a lot i have 3 to 4 cycles a year each lasting 6-8 weeks.hang in there and yes i have kids thats what i live for |
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Title: Re: Desperation has set in! Please Help Post by verndy on Jan 19th, 2003, 5:06pm hang in there man where do u live if its not to far you can call me if you get to down im brook i got tripl billed from msn $117 phone bill and this has been going on for over a year they owe me over 300 bucks and they keep hanging up on me when i try to get it back this site saved my life when i was depresed good info and good people here send me a e mail any time im gitting the headachs for 5 more weeks or so so any time i could be up im shure u know the drill the same time on the clock thing really e mail me and if your haveing trouble we can talk i just went throug the mnm thing thanks for your post the more people i can help maybe the more good will come my whay |
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Title: Re: Desperation has set in! Please Help Post by KingOfPain on Jan 19th, 2003, 5:28pm athos 12, Sorry you are having such a bad time. We are here for you. You said nothing about oxygen in your post. Do you use it? If not, you should look into getting some. My defense is imitrex, oxygen, & verapamil. I never had any luck with prednisone, except bad side effects. Hope it works for you. The thing that keeps me going when under attack is knowing it will not last forever. It will get better. Good luck & I hope it gets better soon for you. KingOfPain. |
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Title: Re: Desperation has set in! Please Help Post by cathy on Jan 19th, 2003, 5:32pm :'( Athos...sorry you're feeling so bad...just to let you know im sending you pain free vibes and prayers .... Cathy |
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Title: Re: Desperation has set in! Please Help Post by Svenn on Jan 19th, 2003, 5:42pm 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 |
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Title: Re: Desperation has set in! Please Help Post by Mark C on Jan 19th, 2003, 6:08pm Sorry you are getting hammered....hang on brother. The triptans are the nectar of the Gods for me, the first thing that ever had a positive effect. The steroids have worked well for me in the beginning but after tapering off the attacks have returned. Imitrex injection is my choice of abortive. I wish I had a magic bullit but finding the magic potions to ease our pain is elusive at best. I will attach a favorite link, I hope it helps. PFDAN's, Mark |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 19th, 2003, 11:58pm Thanks for all of the support!!!!!!! I have tried immitrex, I stopped breathing with it. I rather like breathing I was so busy trying to breath I am not sure if it help the headache or not. I have been on: Verapamil Ergostat Cafrogot Midrin O2 - makes me feel better but the pain is still there. Mega doeses of Nuerontin That is all that I can think of I am sure there were more. Currently Topamax 125 ml 2x day prednisone only for 4 days now.... just makes me cranky and not sleep well. and lorazpram for depression which is working great when I don't have a headache. You know I wish Doc's could make up their minds. I went to the Mayo Clinic's Headache treatment center in Arizona and saw one of the best headache doc'c their is. He told me don't let anyone tell you that these are not clusters. My neuro here says did't you have a headache on the other side once... yes I did have a headach but not like these...... He still thinks that I have migraines.... He is still following the treatment plan from the Mayo so far, but since they have been coming on so frequently my neuro's appointment are 2 months out. I call him and he gets around to messaging me back through his receptionist 3 days later. I am litterally going nuts.. I am losing my mind. It is a good thing that I have no small guns in the house. I beginging to think that they may have to lock me up just keep my around! That scares me. It is not depression, it is fear of the pain, and I know that you guys know what I am talking about. This has been going on for 4-5 days a week for the past month, I don't know how much more I can take. Athos |
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Title: Re: Desperation has set in! Please Help Post by Charlie on Jan 20th, 2003, 1:49am Sorry this thing has decided to make your life miserable. Everyone here knows more about drugs. All I took was Inderal and for me it was very helpful. Here is a technique that I used with great success: Dr. Wright's Circulatory Technique 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 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. Often, 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 but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on 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. Don’t let up until you are sure the attack has ended. 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 |
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Title: Re: Desperation has set in! Please Help Post by rick on Jan 20th, 2003, 3:04am Athos, Sorry to hear about this my friend. I know it may sound radical on the surface, but have you given the mushroom therapy any consideration? It has worked wonders for a number of us here who had also seen failure in attempting numerous treatment options. I have to confess, I was highly skeptical of the treatment myself until I sat down and seriously took the time to read about it. Please ask any questions you might have if you are interested, and here is a link that might help: http://www.geocities.com/ClusterBusters2002/ Good luck-R |
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Title: Re: Desperation has set in! Please Help Post by Linda_Howell on Jan 20th, 2003, 3:05am I realize you posted this in desperatrion but I just wanted to say that Charlies method will NOT work in desperation. so if you want to talk.........calm and serene try his method in off times. That is : when you're not getting hit. I have. And I'm chronic. It works to some degree. I have yet to have it work at a kip 10. But it does work. Linda |
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Title: Re: Desperation has set in! Please Help Post by rick on Jan 20th, 2003, 3:34am I most definitely agree with Linda on that point. For me, this technique is pretty difficult to attempt out in public, but I have had partial if not full relief while doing this exercise at home alone. I once fell asleep in the middle of an attack sitting straight up on my couch with this treatment. Woke up and the attack was over ;D. -R |
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Title: Re: Desperation has set in! Please Help Post by brain_cramps on Jan 20th, 2003, 9:00am on 01/19/03 at 23:58:32, athos12 wrote:
I hope you weren't taking cafergot (or ergostat) at the same time as imitrex! (might explain the breathing problem. <<< Ergotamine based migraine treatments such as DHE 45 injections, Cafergot, Ergostat, Migranal nasal spray, or Sansert, should not be used within 24 hours of using Imitrex. >>> http://www.accessmednet.com/prescription-drug-information/imitrex-side-effects.html I was warned about that years ago when first received Imitrex. Grant |
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Title: Re: Desperation has set in! Please Help Post by JDH on Jan 20th, 2003, 11:30am athos, Hoping you find relief soon. You came to the right place to do some venting. Read all you can on this website and try to find a Dr that knows something about CH's. The right treatments can make a big difference. pfdan's to you brother. |
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Title: Re: Desperation has set in! Please Help Post by Brassbear on Jan 20th, 2003, 11:35am athos, Sorry you're in pain bro. Hope this cycle is brief. About the neuro, I will give you the same advice a doctor game me on that one: Go sit in his office and refuse to leave until he does something for you or gives you what you want. Hope you get some PFDANs soon bro. Michael |
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Title: Re: Desperation has set in! Please Help Post by ComputerGeek on Jan 20th, 2003, 4:27pm Hi Athos, When I am in peek cycle I get 4 to 6 CHs daily and that can go on for weeks at a time. I have tried a lot of the durgs you have but there are only two that have let me lead a semi-normal life: Imitrex injection to abort headaches and Sansert to prevent them. It takes about 5 days on Sansert before the CH's subside. Since you can't take imitrex have you tried Sansert? Keep trying different drugs until you find one that works for you. I use to take Elavil which you did not mention. It is another possibility. Kids are a great reality check and anchor and I am thankful for mine. Pat |
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Title: Re: Desperation has set in! Please Help Post by 2late on Jan 20th, 2003, 4:49pm sorry to hear yer goin' thru this bro' have you tried lithium mixed with verap? some around here swear by it, also depakote seemed to help me awhile back, personally with 02 i need 15lpm for at least 10 mins. to kill it. good luck & hang in! .........2late |
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Title: Re: Desperation has set in! Please Help Post by brain_cramps on Jan 20th, 2003, 6:39pm on 01/20/03 at 16:27:45, ComputerGeek wrote:
ComputerGeek: See the quote in my post above. Also, it has been posted a few times recently that Sansert has been discontinued by Novartis. |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 21st, 2003, 12:37am You guys are great the past two days have been okay today is starting again. Not bad right only about a 4 right now so still functioning normally. I don't think that I was on a preventative at the time that I took the imatrix, becasue then they were just eposodic 3 times a year maybe if that. I wish I could get some doc's to agree. The ones at the Mayo seemed to bee the ones that had all the right answers to me. and the one that I am seeing now gives me short quick answers and I am in and out in fifteen min. the doc's at the the Mayo clinic took 4.5 hours with me and the clinic staff there treated me with soooooo much respect and kindness I could not believe it. I hate going the the ER. ER Doc's just think that I am some sort of junkie or something. My family doc is cool, he is a friend as well, he comes to dinner, we play golf etc... Maybe the circulatory thing maywork.. My circulation has been horrible lately my hands and feet have been freezing all the time, it could'nt hurt. I will try it tonight before itt gets tooo bad. I saw a great political cartoon. Obsese guy smokes in pocket.... with a doc. the doc is saying ... You won't quit smoking, you won't exercise, you won't diet, you won't stop drinking. There is magic no pill that can save your life......................... For less than $1000 a bottle. Thanks again for the support youguys are great!!!!!!! |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 21st, 2003, 2:06am Rick, I will have to ask my Doc friend about the mushroom and have him read the information on that site.. The neuro won't be open minded enough but my family doc just might. My neighbor is also works for a pharacuitcal comapany and was a pharmcucitical doc of sorts himself once. I trust his opinion as well. If it could keep these away for 6 months at a time Hell I will try it.!!!! right now I can't keep them away for 2 days! Athos |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 21st, 2003, 12:37pm Has anyone found a doc that said to try mushrooms?... BTW will they show up on a drug screen? ---Athos |
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Title: Re: Desperation has set in! Please Help Post by catlind on Jan 21st, 2003, 12:57pm Athos, I don't know that any doctor would OUTRIGHT suggest an illegal substance. Although when I told my Dr of the success of psylocibin (sp) she said "well when the legal meds don't work....." So not really saying to do it, but not telling me not to either. That's probably as close as you'll get. Cat |
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Title: Re: Desperation has set in! Please Help Post by MadMan on Jan 21st, 2003, 12:59pm Athos, I'm 42 & cronic now for 2 years. Don't laugh at this, but have you tried over the counter decongestants? I'm using generic sudafed on top of my topomax as needed. It seems to work most of the time. Also, I find walking (pacing) helps me. Or sitting with my head between my legs & then sitting up quickly (repeat over & over) After lurking around this site for over a year I have finally decided to join. What I have noticed however, is that what works for one person may not work for the next. Keep plugging away till you find what works for you. But keep plugging away. We are with you. For we are you. |
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Title: Re: Desperation has set in! Please Help Post by cootie on Jan 21st, 2003, 1:28pm Hello MadMan....not sure I got ta say hi to you yet......Pam :) |
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Title: Re: Desperation has set in! Please Help Post by MadMan on Jan 21st, 2003, 1:54pm Hi back at you Pam. Thanks for the warm welcome! Been sculking around here for the past year or so. Y'all have been a big help to me. Thought I'd join and add my 2 cents. Drive somebody else nuts with my pain stories other than my wife & kids. So hang on it's going to be a bumpy ride. LOL |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 22nd, 2003, 4:41am Damn Doc has been sick for like 3 days... what gives him the right to get sick himmmmm????? :o |
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Title: Re: Desperation has set in! Please Help Post by tommyD on Jan 22nd, 2003, 6:33am athos -- The psilocybin in mushrooms will show up on a drug screen -- theoretically. But it will only show up if they test for it specifically, and that's not very common. The test for psilocybin and other indole-ring hallucinogens (LSD and some other very obscure substances) is expensive and will show positive only if it is done within a few days of ingestion. The amounts in your system are very small and quickly decline to the infintesimal. Drug screens look for common "drugs of abuse," cocaine, opiates, marijuana, amphetimines, barbituates. Only if someone suspects psilocybin specifically would there be a test for it. One reason psilocybin is not a common "drug of abuse" is that it is "counter-addictive." Even if you like it a whole lot, you can't get high off it day after day. Once it does its thing on your brain, it takes a while -- four or five days -- before it will get you high again. Hard to get hooked on a drug like that, though some folks do manage to let it interfere with their lives. But at the theraputic doses and schedule used to treat clusters, that isn't likely. I have found the stuff tolerable, even sometimes enjoyable, but not my favoriite place to be. I have no great urge to take it unless the beast is knocking at the door. I talk too much. -tommyD |
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Title: Re: Desperation has set in! Please Help Post by rick on Jan 22nd, 2003, 1:45pm on 01/21/03 at 12:37:38, athos12 wrote:
Yes. I know a doc that knows full well what am doing and I have their blessing. I also know a highly respected neuro that has told me "well, you know I can't condone it, but if it's working...". Doctors have to walk a fine line here between helping us out with advice and jeopoardizing their careers. Yours may be unwilling to discuss it with you altogether. I can say this, if a doctor you discuss this topic with choses to dismiss this treatment option as a possibility, they do not have all the facts. I printed up loads of info from this and other websites and passed it on to my doc. More than anything, I'd encourage you again to sit down and read EVERYTHING you can on the treatment and go from there. And don't forget that the others here that have been down this road will be here to help answer your questions. Here's another link: http://www.erowid.org/plants/mushrooms/mushrooms_medical1.shtmlhttp://www.erowid.org/plants/mushrooms/mushrooms_medical1.shtml Peace, -Rick |
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Title: Re: Desperation has set in! Please Help Post by dannyboy on Jan 23rd, 2003, 2:01pm Please don't be afraid of the psylocybin mushrooms If they don't help your headaches then the worst they'll do to you is make you see a tree or a rock or a cloud or something in a way you've never seen it before. If you take way way way too much then you might vomit briefly, very small price to pay You need to do it propperly though, first time, no half measures, do your homework, miricales do happen Nature is the best place to take them OK Danny |
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Title: Re: Desperation has set in! Please Help Post by ZAIRA on Jan 23rd, 2003, 2:24pm Athos, I am sorry to read this. :'( Be strong and remember that you are not alone, and that there others out there that understand. :'( I will praying for you :'( Good luck from Italy. Zaira :-* |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 23rd, 2003, 4:47pm I really do appreciate all of the support that is here... It is the combined support of all of you plus my family that is helping me through this... Thank-you really tankyou!!!! Athos |
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Title: Re: Desperation has set in! Please Help Post by Ann on Jan 23rd, 2003, 6:40pm Hi Athos and welcome! Sorry you're having such a hard time right now. The people here all know what you are going through and the fear of pain is rampant around here! Myself included. For the last 3 months I have been on a combo of Verapamil regular release and lithium. It has lessen the number of attacks incredibly. I still get hit every now and then, and of course always at inappropiate times! ;) I'm glad that you have your son to keep you going. Please remember that when you are not in pain, to take advantage of those moments. They are few and far between, but they are what keep me going. When I get hit I remember them and cherish them. Like a lot of people here I also use imitrex injections. They are a godsend. Perhaps if you took only half the dose you could continue breathing? Just a thought! Also, I take half an amerge every night to allow a pain free night of sleep. I haven't been hit at night in over 5 months. It's wonderful and makes it easier to handle the day time attacks. Anyway, just my 2 cents worth. I hope you find something that works for you. Stick around there is a lot of info here and very caring people. You might want to get your wife on here as well. She will be better armed herself in dealing with this condition. hugs Ann |
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Title: Re: Desperation has set in! Please Help Post by RobinT on Jan 23rd, 2003, 7:06pm Hi Might I suggest firing the neuro and getting a new one? When mine gave me pred. and said see you in 3 weeks, I was kinda pissed. After thinking it over (and calling another doctor) I fired her. My new neurologist is not up-to-snuff on CHA's, but she is open and receptive and has been seeing me twice a week (acupuncture). I got incredibly depressed by the medical community. |
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Title: Re: Desperation has set in! Please Help Post by nancyc on Jan 23rd, 2003, 8:29pm Athos, i just had supper with another clusterhead from the mb...we were discussing how we both had felt on topamax...it made both of us crazy...depressed...had lots of bad side effects...i have definetly been where you are at now..all i can tell you is to rethink taking topamax...things were alot better once i got off of it...there are other antiseizures out there that don't cause the terrible side effects topamax does..especially the depression and feeling like you cant go on...it is one drug i would never consider taking again..hang in there and know you have lots of support here...that is a Godsend in itself...knowing there are people who understand your pain and desperation..email me anytime...smiles, nancyc |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 23rd, 2003, 11:49pm Nancyc, Good to hear from you!!!! I have never been depressed before..... I never thought it could be the Topamax.... Just read the side-effects crap and there is it..... The Neuro that I have is really respected but I can't wait for him... I need someone else I think.... someone willing to be creative.... He is not very open minded. I have/had(i hope) a condition called Vaso Depressor Syncope that caused me to black for no reason form Jan 2002 until april 2002)..... That is what the Mayo Clinic clinic called it.... it was an "autonomic misfire" I have a heart beat that is also an autonomic misfire and (this is kinda wierd I get goose bumps when I urinate) That was also part of these autonomic misfires that the Mayo Clinic in Arizona along with my CCH's had diagnosed me with. I had already been on Zonegran for the Blackouts and it seemed to be working...... From a Neuro here in Utah that thought that I was faking blacking out to get out of work..... He told this to my family doc who is a friend of mine.... when I have been able to work I have been a work a holic. I never went back to to that Neuro because of that. My New Neuro took me off of Zonegran to Topamax they are similar..... He does not believe either of the Mayo Clinic's diagnosis of Vaso Depressor Syncope or CCH..... He still thinks that I have Migraines and not sure why i was blacking out... Now I take Topamax 125 2x per day for prevention of blackout and headache Prednisone 40 mg per day - Prevention? soon to be off Lorazipam - 1x day - depression Ambian - a sleeping pill when I need it... some pain pillls now and then when I can get to it soon enough. Rarely ER some pain shots now and then when I think I am going to die. I need to find a Neuro like the Mayo's here local.... Nancyc Thanks for the info on Topamx..... Athos |
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Title: Re: Desperation has set in! Please Help Post by Jayne on Jan 24th, 2003, 9:51am well I have to say something about the shrooms. I was episodic before I started messing about with shrooms. I turned chronic not long after I had been playing with them. I have heard of a few other people that it prolonged their episodes. Given another chance I would not have messed with them, that's just my experience. I also wonder....what dosage of verapamil you were on and for how long. A lot of people give up on that drug way too soon. They don't take enough. My doctor is a chronic sufferer. He was on a mixture of Verapamil and Lithium. I am going to see him soon as he has had major sucsess with Botox injextions. I know where you are mentally, I was there 4 years ago until I found this place and a doctor who knew what to to to help me. This is a bastard of a disorder/disease. Wishing all the peace one could give you Jayne |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 24th, 2003, 3:08pm I talked to my Family Doc about the Shrooms... and he said that it might be worth a try.... but he is not qualified to make the determination...... he wants me to talk to my friend the chemist and to my neuro first.... At least he was open minded about it...... :) Jayne sorry about your experience with shrooms.... It is all an experiement. They had given me Zyprexa and told me that it may help me calm me down to help me sleep..... I was one of the lucky few that all that did was agitate me and make me toss and turn all night..... Athos :-/ |
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Title: ,Re: Desperation has set in! Please Help Post by ComputerGeek on Jan 24th, 2003, 3:38pm Hi brain_cramps |
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Title: ,Re: Desperation has set in! Please Help Post by ComputerGeek on Jan 24th, 2003, 3:39pm Hi brain_cramps |
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Title: ,Re: Desperation has set in! Please Help Post by ComputerGeek on Jan 24th, 2003, 3:42pm Hi brain_cramps, Thanks for the heads up on Imitrex and Sansert. I am going to contact my nuro as I have no memory of him telling me to not take Imitrex and Sansert together. He knows I have. I hate taking medications! Pat |
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Title: Re: Desperation has set in! Please Help Post by rick on Jan 24th, 2003, 4:53pm on 01/24/03 at 09:51:41, Jayne wrote:
Jayne, Were you using any other meds when you attempted to treat yourself with this therapy? Were you on any other meds at the time you began to turn chronic? Do you recall who specifically stated that their cycle was prolonged by use of mushrooms? Were they using any other traditional meds when they were dosing? I'm very curious, not just for those who are thinking of attempting to treat themselves, but also for myself-this is my primary source of relief, and I want to avoid trouble. These details are extremely important to those of us who use hallucinogens to fight the beast Thank you, -Rick |
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Title: Re: Desperation has set in! Please Help Post by Margi on Jan 24th, 2003, 5:04pm Hi Rick - I see Jayne's not online but I can answer some of the questions you've asked here. I remember when Jayne tried this treatment and she had Pinky's close supervision through it all. I'm 99.9% sure she was med free at the time, and did everything right. It could be my husband, Mike, who she's talking about in regards to the prolonging of his cycle. He WAS completely med-free when he dosed (albeit a month into the cycle...they - we think - had helped to keep him in remission prior to that, but now we're not so sure). he tried 2 separate doses - yes, the right time gap in between doses - and it definately escalated everything for him. He ended up going through a 6 month cycle this last time, his longest EVER. He did, eventually, do the pred burst, then verapamil combined with lithium, and imitrex and O2 as abortives - but all meds were started after the psilo doses. BobP is another one this treatment failed. |
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Title: Re: Desperation has set in! Please Help Post by rick on Jan 24th, 2003, 5:56pm Thanks for the info, Margi. I do remember reading about Bob's case, he began a cycle of prednisone after a few doses. I don't remember exactly, but he may have started the cycle of steroids after one dose. (Bob, are you out there to expand on this?) And Mike also began using conventional meds after dosing, with the total result of both treatments being a longer than average cycle. My experiences with prednisone and the triptans resulted in the worsening of my condition. When I began dosing with mushrooms, symptoms began to diminish. By the time I began dosing, my cycle should have been over in comparison to the length of my previous cycles, but my total condition was worse than it had ever been. The mushrooms provided me with relief the more I dosed (with roughly one week breaks in between treatments). But if I let up on treating myself thinking I was better, the beast would return, so I had to keep dosing (took about 16 treatments :o). But it worked. And to date, it has been the most effective treatment I've used. I have until Fall 2004 before I expect to get hit again hopefully, so only time will tell in my case. Thanks ;D 8)! -R |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 24th, 2003, 6:52pm I got a message today from my neuro.... He wants me to try Migronal..... no more Prednisone.... Then take Shots of DHE to see if that will help... He thinks that my current attacks are rebound headaches....... I think that I am going nuts here.... Anyone got a gun... For me or him either will do..... just kidding but I am getting no where fast here. --Athos :-X |
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Title: Re: Desperation has set in! Please Help Post by K. on Jan 24th, 2003, 7:46pm I tried migrinol (spell?). It's a nasal spray ergotamine...I think...there is an antinausea med you have to take with it I think. Anyway...if it's the same thing..I don't mean to scare you or anything but that shit made my nose swell shut and I vomited for about 10 hours...geez. I remember the day very vividly...halloween before last...was supposed to be taking my 5 year old...now 7...trick or treating. Thank God for extended family! I've heard about DHE, let us know how you do. Sorry you're having such a hard time... K. |
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Title: Re: Desperation has set in! Please Help Post by Jayne on Jan 25th, 2003, 9:57am Hi Rick If my memory serves me well..... I had just finished a bout and was med free...I think I had been in remission three or four weeks and decided to do the shroom prevention therapy. I took some at my friends house that night and my headaches returned that evening. That year I started getting hit with cycles closer together. I tried the therapy again, I was on the lowest dose of verapamil about 120mg per day. I know it works wonders for a lot of people, but I just would not feel right not telling you, it helped me turn chronic and that I am sure of. So there is always a risk with anything. Mike is one I know it prolonged his cycle. Hey if it works for you, believe me I am over the moon for you, I am not one of those anti Drug people. I am just telling you all what I know to be true for me. I wish you all NO PAIN Jayne |
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Title: Re: Desperation has set in! Please Help Post by Jarvis on Jan 25th, 2003, 11:17am Athos Hi...Sorry your suffering....This thread is great for the reason that it shows some of the many different ways and meds we use to deal with these damned headpains. How many meds work for some and not for others. I am in the others category......Untill you find what works for you allways athos, here is one more to try wich I would recomend for anyone................... As soon as you feel an attack coming on, go to the edge of the kitchen sink and start doing pushups against the counter. This works the same as oxygen only better and cheaper. Rapid pushups and counting each one. Creates endorphins wich are free and puts them right where they are needed at the base of the pain. Can reduce time to less even abort. Increases air/oxygen intake. Puts you in a form of concentration that helps you thru. No matter how it hurts dont stop untill its gone. You will feel better afterwards and not be as beatup as you would otherwise. After about 25- 50 you will feel it begin to work.You will know its working cause you'll start salivating from the top of your mouth. Make them as easy as you can as the repetition and breathing are what counts and dont go to pushups on the floor untill ready. Recovery after the CH is so quick you'll wonder if you had one. .....I personally have risen to as many as 400 at a time during the worst hits. This has replaced all pacing for me at night and puts my upper body in shape too. Makes some good out of a bad situation. |
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Title: Re: Desperation has set in! Please Help Post by nancyc on Jan 25th, 2003, 11:35am Athos, you got mail, bro...hang in there...prayers going up for you here in SC...smiles, nancyc |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 25th, 2003, 5:49pm I am concerned about going off of the topamax because of the black-out's that I was having a year ago that Zonegran seemed to fix and my neuro switched me to topamax which has asome of the same qaulities for blackouts as zonegran.... I am now in the process of finding a new neuro... any ideas for a good one in utah Salt Lake/Ogden Area other than Fantle or Varma in Ogden? --Athos |
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Title: Re: Desperation has set in! Please Help Post by suzy617 on Jan 25th, 2003, 6:53pm Hi Athos, Sorry I cant help you with any useful advice but I just wanted to say hello and welcome. Hope you find PFD's real soon. suzy |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 26th, 2003, 8:42pm Thanks Suzy.... Had a whopper bout last night...... Can't believe the energy that you go through fighting these...... Did I tell you guys I lost my job over theses... when they got so bad, they said sorry.... It was a small comapany... not much I coul do... Utah is a right to work state. I have some unemployment - about 7 more months worth.... so we will see what happens.... IT is not much to live on... Supped to get insurance settlement from the death of my step dad and that will help... |
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Title: Re: Desperation has set in! Please Help Post by Groove on Jan 26th, 2003, 9:02pm Hi Athos... I have to admit that I'm absolutely stunned about your losing your job because of these! I am a freelancer and was once in the middle of a particularly brutal cycle and was certain that I was going to get canned. Luckily for me (and unluckily for her) the boss was a sufferer as well and we got along like a house on fire when she walked in on me while I was shooting some Imitrex into my veins! Needless to say, I didn't lose my job - despite the hours lost. Still, it made me look into a private "job insurance" thingy which I currently have just in case the unthinkable happens. Personally, I would go after your former boss for wrongful dismissal just to make a point. Grrrrrrrrrrrr.... Hope your suffering ends soon, mate. Groove |
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Title: Re: Desperation has set in! Please Help Post by athos12 on Jan 26th, 2003, 9:50pm I still do some work for them on the side, but since these attacks have some so strong.... so frequent I can't stay consistant.... The guy is a friend of mine, it is a strange situation.... I posted a long time ago about a company when I was sick that dropped my with an FMLA violation... The Lawyer I had lost was not an exper either... I am trying to find another that will either do work on a contigancy or do pro-bono with my money situation right now... I really want to go after that company.... Groove... What do you freelance? Design? I used to design for and agency.... I did some work on the the "Ants" poster, "Crash Bandicoot II" cover I did and did some promotional work for the new godzilla.... once upon a time.... --Athos |
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