|
||
|
Title: There are alot of new people here..... Post by jonny on Apr 1st, 2003, 6:47pm And some of them If not most of them have been hunting for the right meds and coping tricks. My question is: What works for you and for how long, what did work but quit (How long did it work), are you chronic or episodic.....Any tricks work for you, heat, cold, excersise. jumping in a cold lake bareass.....you get where im going with this. Me? Got 02 10-12 yrs ago with no instructions so it never worked. When I got here I was taught how to use it and can kill the beast almost every time. Meds: Lithium and Verapamil everyday for over 12 years and it still stops 80% of my HA's, why?....I dont know why this combo has worked so long for me and not other chronics. What say you folks? ......................................jonny |
||
|
Title: Re: There are alot of new people here..... Post by Melissa on Apr 1st, 2003, 6:50pm on 04/01/03 at 18:47:06, jonny wrote:
pregnancy ;D :-*Mel |
||
|
Title: Re: There are alot of new people here..... Post by WendyHowe on Apr 1st, 2003, 6:55pm Hello to all the new people Hello new man SPUDMAN -great name I'm quite new too and there are fantastic people who will help you loads here. Me, newly diagnosed episodic. Imigran to abort CH Zomig to abort occasional migraines Constantly refreezing flannel in white wine chiller sleeve (stays cold for ages) on my temple while I scream until pain subsides. Not allowed O2 because pillock doctor thinks I will blow myself up (I smoke) Wendy from the UK |
||
|
Title: Re: There are alot of new people here..... Post by brain_cramps on Apr 1st, 2003, 7:05pm episodic for 20yrs (1 to 2 months - usually every 18 months) 1st 10 yrs : just about every possible med!!! (a LOT of demerol) Next 5 yrs : Imitrex pills Last 5 yrs : no meds (damn taxman!!!) Other: sleep upright with windows open LOTS of fresh air NEVER skip meals LOTS of small meals, FEW big meals not getting stressed :D grant |
||
|
Title: Re: There are alot of new people here..... Post by jonny on Apr 1st, 2003, 7:06pm on 04/01/03 at 18:55:23, WendyHowe wrote:
LOL ;D I smoke 4 packs aday and I have a tank 10 feet from me. Pillock? .......................................jonny |
||
|
Title: Re: There are alot of new people here..... Post by Slammy on Apr 1st, 2003, 7:06pm Leave it to Jonny to remind us what this board is all about and bring us back to the proper perspective... You da King! :D Me? I have been episodic for 27 years ( I was 14 years old). Been to every pain specialist, accupuncturist/pressurist, chiropractor, nuro, Shaman, witch doctor, in the South Bay without any success. I took prednisone, maalox, histamines, anti-histamines, suppositories, ex-lax, midol, vicodin, elavil, GHB ( ;D ) Until I found this board in 1999. Since then, I have found what works for me , the best is: Cafergot to abort during waking hours. Oxygen and Imitrex shots when I wake up in the middle of the night with a king-fuck-master 10 humbdinger, and Verapamil 360 mg a day as a preventative. Thanks to this mix, and the brothers and sisters of this mb, my quality of life is affected minimally by this friggin demon! :D Slammy 8) |
||
|
Title: Re: There are alot of new people here..... Post by amber on Apr 1st, 2003, 7:24pm Good idea jonny :D Have had headaches for 8 years now. Up until July, imitrex worked "enough" (the pill form) to not complain. Up until july, we figured (lame ass doctors) that I had hormonal migraines. Don't even get me started on how I may or may not fit the bill for that one. Since july I have been daily with maybe one or two days of break. Wake up with them in the middle of the night, and usually have them most of the day with very little "down time". I have tried: Imitrex Maxalt Amerge Zomig (all in pill form) Prednisone (just made me feel like a coffee addict) DHE treatments for 3 days. Narcotics (LOL) Depakote Naproxen Topamax indomethacin baclofen migranal nasal spray verapamil (made my headaches even worse, after 3 days I was told to stop taking it). sansert (couldn't take it because of another condition) I have a feeling I have not been put on lithium for the same reason as the sansert issue. I am trying oxygen tomorrow. Will be trying shrooms this summer. A hot shower can really help but won't always do the trick. It's best if i can get in there and really "shampoo my hair"...as in ...massage my scalp big time while the hot hot water is running. It's a circulation thing. Walking doesn't make it feel THAT much better but often I will get some relief. Being bitchy feels good too, for some reason ;) So basically, I'm the cleanest bitchy person with the shiniest hair you've ever met :P Amber |
||
|
Title: Re: There are alot of new people here..... Post by don on Apr 1st, 2003, 7:27pm Episodic 26 years Med protocol that works 240 Mg verapamil per day 1/2 imitrex injection for breakthrough attacks. Water, water, water Dramaine for sleep aid Prednisone taper when cycle wont break In Patient IV DHE + benedryll when it REALLY wont break Meds that dont work All the rest and I've tried them all Med that helps me cope clusterheadaches.com headachesupportgroup.com |
||
|
Title: Re: There are alot of new people here..... Post by tanner on Apr 1st, 2003, 7:42pm hi all , i'm chronic/ varient. i get the ha's everyday ususally most of the day or night with no set pattern. the varient part is because i first went chronic in 85 and stayed that way (everyday) until 92 i think. anyway i suddenly became pain free and stayed that way until july 2000 and have been daily again since then . same side same intensity same downword mental progression. none of the drugs mentioned above have worked for me. i take ambien with alchohol (which has never been a trigger for me) when i just can't take it any more(like tonight) it spaces me out amd somehow that is better. i then go out and do dumb things like canoe or kayak at night places i don't know and havn't been before,but i am still here so i guess its the challenge that i need to make me focus less. i'm currently trying neurontin in ever increasing doses and hoping for something.... who knows ya can't go down easy! tim |
||
|
Title: Re: There are alot of new people here..... Post by suzy617 on Apr 1st, 2003, 7:44pm Episodic going on 22 years. Med free 19 years. What works: imitrex Next cycle will try imitrex, 02 and what looks like depauote on the rx as preventive. anyone have a clue what this is? I tried looking it up and cant find any info. Maybe i'm just not reading it right. Oh yea, sometimes marijuana for the shadows. ;) suzy |
||
|
Title: Re: There are alot of new people here..... Post by 2late on Apr 1st, 2003, 7:45pm had 'em for 5 year's now diagnosed chronic at first, but now that i found this board i know i'm episodic. different things have worked for me as far as preventatives, my doc switches meds if i'm in a bad way and keep on his shit, the one thing that remains constant is verap, i'm 1-week into neurontin just went up to 1200mg. a day,hopin' to get relief from this cycle! abortives 02 & trex shots. .........Jack |
||
|
Title: Re: There are alot of new people here..... Post by Roxy on Apr 1st, 2003, 7:45pm Chronic for a year and a half, 14 mths. with no meds what so ever. First Dr. told me it was tension headaches, patted me on the head, put me on topomax. Stayed on that for about 6 mths., didn't do anything for the head. GP told me she thought it was ch's, put me on indomethicin, stayed on that for about 2 mths., didn't do anything for the head. Started the welding 02 on New Years Eve.....made a world of difference. It will help knock back the ones that come during the day, but they always return after about an hour. At the end of Jan. my new neuro started me on verap (360mg a day), imitrx, maxalt, cafergot. Verap doesn't seem to be doing anything, I upped it to 540 a few weeks ago, and it's still not helping . Since I started it, I seem to getting hammered more than ever. Maxalt is like eating candy.....no help. Trex shots will knock one out in about 8-10 minutes. I use 2mg per shot. Nasal sprays will sometimes work in a pinch, but I usually have to use two of them. Still looking for that wonder drug that will let me get through a few days PF......anyone found it yet? ;D ;) |
||
|
Title: Re: There are alot of new people here..... Post by K. on Apr 1st, 2003, 8:02pm Thanks Jonny....I like this so much more than all the politics that have taken over the message board lately. Suzy....it's "depakote". My neuro wants me to try it too, she said she has had good luck with her cluster patients but I haven't agreed to try it yet. I also have tried every "abortive" drug imaginable for CH relief. I'm episodic and have been for 18 years. I haven't had much relief for the last 3 years so am thinking I may be going chronic. I'm not ready to accept that yet. What really works for me: Verapamil 480mg daily as a preventative, O2 as my best abortive and imitrex injections if I need them. Sometimes if the shadows are really persistent then I use the imitrex 50mg pills. How I cope? All of you wonderful people on here! Karen |
||
|
Title: Re: There are alot of new people here..... Post by jonny on Apr 1st, 2003, 8:14pm on 04/01/03 at 20:02:12, K. wrote:
So do I Karen, it helps me come up with better topics to get away from that crap. .............................................jonny |
||
|
Title: Re: There are alot of new people here..... Post by thsa/simon on Apr 1st, 2003, 8:16pm Episodic for 18 years tried sansert caffergot prednisone depakote verapamil imitrex frova O2 demeral a myriad or barbiturates percoset few other things I cant think of right now Last set was on depakote twice a day frova once a day and on breakthroughs percoset for the shadows. was having too many breakthroughs but they eventually went away. Next set the plan is prednisone ( I had fairly good luck with that time before last) frova long story short, I still havent found the magic pill. O2 is ok, but I move to often and the army wont move it so I dont keep it around. simon |
||
|
Title: Re: There are alot of new people here..... Post by brain_cramps on Apr 1st, 2003, 8:17pm on 04/01/03 at 20:02:12, K. wrote:
ditto!!! good topic jonny - more to the point of the MB grant |
||
|
Title: Re: There are alot of new people here..... Post by achinghead on Apr 1st, 2003, 8:39pm me... well.. 16 yrs eposodic.. usually every 12-28 months. longest period... 3 months.. (of total hell) tried: prednisone- worked but swelled up like a tick verapamil- didnt go well with me amitryptaline- worked.. but made me tired and blurred vision, bad taste Imitrex--- all 3 forms man.. i cant remember all the things ive tried.. sorry guys.. needless to say ...... if they woulda worked id still be on em. what works best for me now are the trex injections.. just trying 02 today.. hopefully that will work too. Tried Zomig this past weekend.. I think it aborted 2 out of the 4 I tried. Sorry guys.. thats about the best I can do.. Having a real bad cycle(6-1/2 weeks now). If you want to know anything else... all ya have to do is ask. One more thing.. Ive said it before and Ill probably say it many more times.. THANKS to all that have helped me here... you guys dont know what it means to me to be able to interact with fellow CH's |
||
|
Title: Re: There are alot of new people here..... Post by domm on Apr 1st, 2003, 8:39pm Thanks Jonny for bringing this topic back in the conversation. episodic with 2 year remissions (I'm one of the lucky ones) O2 (after I learned here how to use it right) to abort Imitrex pills - to abort and kill shadows Verapamil - to prevent Tried but didn't work or help Elavil Robaxin every OTC available antihistimines PFDANs to all domm |
||
|
Title: Re: There are alot of new people here..... Post by catlind on Apr 1st, 2003, 9:07pm Episodic 3 years Things tried: (from most drastic to least) Hysterectomy temporal artery biopsy prednisone (worked, but I like the tick description, still trying to lose the pred weight) inderal amitryptalline noratryptalline indomethacin B complex vitamins Magnesium phenergan dramamine oxycodone hydrocodone percocet demeral morphine nubane feverfew immitrex celexa prozac depakote norvasc maxalt oxygen all the OTC's including ketoprophin propanalol aspirin naproxen verapamil oxygen stadol NS I think that's all of them. Right now I'm using verap 240mg daily for preventative, stadol and O2 for abortives, (O2 works for about 60% if I get it right at the beginning) Maxalt worked on the last one I got but I can't get anymore. One of these days someone will let me use the damn drugs that work instead of continually resorting to narcotics. I forgot about baclofen and other muscle relaxants. Cat |
||
|
Title: Re: There are alot of new people here..... Post by 9erfan on Apr 1st, 2003, 9:28pm First 14 years episodic. Last 4 years chronic. In the early years, prednisone worked as an abortive. Nothing worked as a preventative. DHE 35 also worked in the ER as an abortive. Have spent the last 2 years without insurance so don't have any meds. Currently taking high doses of motrin & alleve every 6 hours or so (don't ask...). Since I started consuming massive quantities of water (a gallon a day) I find that I have had less KIP 10's. If I ever get insurance again, I will try jonny's combo of oxygen, lithium, verap. Virginia |
||
|
Title: Re: There are alot of new people here..... Post by fubar on Apr 1st, 2003, 9:29pm Hello, my (nick)name is (fubar)Shawn, I’m 37 and I'm a clusterhead. :) Been episodic since about 20. Had no specific diagnosis until I was 32. Been ‘in cycle’ since November 2001, but I didn’t start to panic about it until a few months before the time I found this board. There is understanding here I have not found anywhere else, and I love this place. Under the “What works” column: Keeping it at bay even though you know it will hit (winning the battle, not the fight): Anything high stress, or anything requiring intense focus. Adrenaline. Oxygen. Plenty of pure oxygen works wonders. It’s almost better to not fight it coming on, let it grab you then smack it down with the oxygen. When I can’t get O2, I use the trex shots. Maybe 45% effective, depending what I’m doing. Prevention: Currently on Verapamil 720mg day, and Depakote . I have a PF day every now and then. Still looking to string two of them together. Triggers: The clock. The beast is pretty damn reliable, shows up early afternoon, evening, and when ever I try to fall asleep on him. |
||
|
Title: Re: There are alot of new people here..... Post by Aussie on Apr 1st, 2003, 9:48pm Nice change of pace, back on the CH track. From the pictures I've seen of you and reading some of your posts Johny, you are as mad as a cut snake but you always come up with the goods. I'm episodic and have been for 16 years, been prescribed Pred. and Verap. but have chosen not to take at this stage. I only get walloped at night and maybe only suffer for 1 month each year, so I revert to cold showers, ice packs and alot of self control. I admire all of you Chronics who have to fight this every day. I would't wish this upon my mother in law. Steve |
||
|
Title: Re: There are alot of new people here..... Post by Jarvis on Apr 1st, 2003, 9:58pm I have suffered 27 years with CH. Averaging 8-12 attacks a day. My last cycle was 6 months. the previous cycle lasted 3 years. several cycles prior to that were about 4 months. Prior cycle 6 months, before that was 3 years. So though it seems my cycles are non conforming they still are. Just live my life in a wider circle I guess. I've tried all of the meds listed above with little or no relief. However prednisone at high dosage will give me a short vacation starting at 80. Also tried a lot of illegal meds except the shrooms for clusters. I do take ephedrin as a short term abortive when neccesary and this "helps" a good % of the time in the daylight hours. Otherwise I use no medications at all........... My primary treatment for an attack is pushups at the first sighn and the endorphins created (I think) will greatly alleviate the pain and occasionaly abort a full on attack. I have also tried a lot of alternatives, acupuncture, diets, chiropractics, head banging, altitudes, vitamins, herbs, etc.. to no avail. |
||
|
Title: Re: There are alot of new people here..... Post by Mikey on Apr 1st, 2003, 10:08pm Chronic here for 5 years now with no breaks at all. things that have helped me but don't anymore. Lithium Prednisone Sansert Topomax Neurontin These things helped for very short periods of time. these next things did not help at all. Amytryptaline Inderal Clonapin Magnesium Prozac Propranalol These things help for brake throughs. Imitrex Inj. (the full 6 mil) Imitrex Nasal spray 20mg O2--Would help, and did for a very long time, but don't anymore because of some other problems that i have. Stadol NS, mainly for shadows. Maxalt Percocet 7.5mg These next things i use for preventives at the present. Verapamil 720mg a day. Depakote 1,500 mg a day MS-Contin 90mg a day I've tried most everything and there is a good chance that i have missed something. If i did, it must have been no good to me anyway! For all the newbies out there, I hope that you find something that fits you and helps alot. Lots of luck to you and PFDAN to you and everyone here on the MB! Mikey, |
||
|
Title: Re: There are alot of new people here..... Post by Jarvis on Apr 1st, 2003, 10:27pm Fu wrote- "Under the "What works" column: Keeping it at bay even though you know it will hit (winning the battle, not the fight): Anything high stress, or anything requiring intense focus". "Adrenaline." That too. I have bypassed some pretty heavy hits in adrenaline situations. I once got hit skiing. was at the top of a hill thought about waiting it out as I had never skiied this run. I went for it under a full blown attack with drops of 30-50 ft. Instantly, as it was do or die the attack disappeared. Thats the extreme but I can recount multiple times like this. I also need that stress and have to find concentration. Not for everyone. |
||
|
Title: Re: There are alot of new people here..... Post by JDH on Apr 1st, 2003, 10:29pm Episodic for 18 years. Cycles usually start in the fall and last 2 to 6 months with one to four hits a day. I've tried: Imitrex, nasal & injection Fioricet Lithium Percocet Vicoden Stadol Prednisone Feverfew Verapamil Oxygen Gallons of water Praying I've had the most success with O2, Verapamil 480mg and Imitrex injectables (for when I can't get to the o2). Jim |
||
|
Title: Re: There are alot of new people here..... Post by Lori on Apr 1st, 2003, 10:54pm Episodic now for about 12 years. Never knew what I had until I was diagnosed properly last year after finding this board. Then I was finally getting some proper meds. So, I never had proper meds to treat this until last year. And WOW! What a difference. I still hurt, felt like crap and hated life, but it wasn't as bad as before. Before diagnoses~I tried amtatrypaline(sp?), chiropractor, acupunture, tons of ibuprophin, pain killers, muscle relaxers~none of these worked at all! After diagnoses~ ~I was given indocin to try to r/o cph I believe it is. Didn't work. ~So, onto verapamil at 360mg a day along with topomax at 100mg aday. Together, both of these worked pretty good. I must say it was the best cycle ( pain wise) I ever experienced. ~For the break through HA's I took zomig. It worked pretty good also and I believe it's only because my pain was not as bad because of the preventatives. I plan on trying 02 next cycle since it seems to help many. ~I also would take hot showers (sometimes helped) and place a few drops of hot sauce under tongue at the onset of HA and keep it there as long as you can. ~Walking (if you can manage) sometimes helped a little..more distraction I think but whatever works. I will try cold packs next time...heard that works ok too. ~Sleeping sitting up in a recliner did seem to help sometimes or at least reduce the intensity sometimes. Don't understand why that would work. I guess that it for me. Welcome all the newbies! |
||
|
Title: Re: There are alot of new people here..... Post by paul_b on Apr 1st, 2003, 10:59pm Episodic 25+ yrs., 4yr. remission (retired from teaching), episodes began again in June, ended in Feb. ( longest cycle I ever had, usually only 3 months). Oxygen and Imitrex have been only helpful treatment. |
||
|
Title: Re: There are alot of new people here..... Post by Charlie on Apr 1st, 2003, 11:26pm Well.... I had this horror for 22 years. As of this month, I've not been hit in 12 years. Can't complain I took Cafergot....useless and Inderal. For me it was great and because I was episodic, I didn't take it as a preventative. It made me a little tired and I could stand a few days until it kicked in. The reason I could stand it is this: 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 |
||
|
Title: Re: There are alot of new people here..... Post by Mastifflvr28 on Apr 2nd, 2003, 12:12am Episodic since I was 16...I'm 31 now...once year between spring and fall...duration 4 months (used to be 2 weeks, way back when). GP diagnosed me at 16...put me on Fioricet w/ Codeine...did nothing but made me puke and knocked me out after the hit. Also on extended release verap...don't think it did anything. Found this board in 98...miracles for me: Oxygen, imitrex injections, fungus. Also got on standard release verap last year...fungus made it WORK!!! This site has been the biggest Godsend...helped me find the right meds, and my FAMILY!! Mast (weany clusterhead) |
||
|
Title: Re: There are alot of new people here..... Post by michaelc on Apr 2nd, 2003, 2:48am this thread ROCKS! Episodic, 13 years Clusters on 1 or 2yr cycles for 6-9weeks No Meds Ever until this cycle, but plenty of time rolling around on the ground like my Brain was full of Fire-Ants. ;) Since i never had meds & plenty of k10 days - i learned a lot about my mind and how it copes with pain and anguish. I have tried every mental & physical technique in the book to affect the pain. Zen, meditation, biofeedback, focusing very hard on something else, praying, screaming, kicking, punching myself in the head, choking myself so i would(hopefully) pass out, standing on my head, humming different frequencies to try and interrupt the pain with "sono-chemistry", smoking, not-smoking, eating an alkaline diet, smoking pot, taking barbituates, cold showers, hot showers, eating Hot peppers and putting broken glass in my shoes(j/k) None of those listed had any effect on the pain or the cycle. From postings on this board I learned exercise helps some ..... it works about 30% of the time for me, which is great! to manage I try to keep my mind occupied with controlling physical movements. Ususally rubbing my scalp, pacing, moving my arms around or rocking back and forth. I try to pay attention to my fingertips and other parts of my body that dont hurt as i'm reminding myself that this will pass. This cycle I have tried shrooms and oxygen. The shrooms have worked much better than I expected. 1 small dose and another larger one seems to have turned my cycle into a "shadow" It's gone from 2 or 3 k10 per day abruptly to 1 or 2 k4 per day with a slight shadow. this is odd becasue I would normally have about 4 weeks left of 3-a-day headbangers. Time will tell. I got O2 for the first time last week .... it knocks out the big jabs of pain and is fairly inexpensive. |
||
|
Title: Re: There are alot of new people here..... Post by cbolony on Apr 2nd, 2003, 6:13am I'am 50 yrs old get 3-4 cycles a year since 1996.I take Verapamil 240mg twice a day and also use 02 once and a while take frova my best friend is imitrex injection never leave home with out them |
||
|
Title: Re: There are alot of new people here..... Post by tommyD on Apr 2nd, 2003, 6:24am I feel like a green horn here, a real tenderfoot, and at my age... Met the beast only two years ago, at about this time of year. I've only tried a few meds. Ibuprofin: a joke. Imitrex pills: too slow, too inconsistent. What works for me: Water, as both preventive and abortive, to a limited degree. Shrooms, dude. Two small doses a week apart, once every two month when in cycle. Last dose I needed was 14 months ago. I think it wiped out last year's cycle entirely. Now with spring, the warning shadows return. For shadows: ginger tea, even ginger ale. This web site...one of the places that helped me figure out what was exploding behind my eye, and THE place where I learned how to stop the beast. -tommyD |
||
|
Title: Re: There are alot of new people here..... Post by Hound_Dogg on Apr 2nd, 2003, 6:48am Yo...Jim...episodic male, 38 year old, usually get CH in the change of seasons 1 or twice every 2 years. All Kip 10's no shadows. Procedures I've tried: Occipital Nerve Blocks 1 week of IV Steroids I.V. DHE C-2 Nerve blocks. Chiropractic Accupuncture Meds tried: You name it. What works: Verapamil 240 mg. Imitrex Injection Oxy IR (Percocets without Tylenol) 5mg. For times I can't use the trex. Also take occasional Duragesic 50mcg (For possible GWS) Chronic pain syndrome. This regimine kills most Clusters. However, you have to make sure to wean off of the Steroids & Narcs, or you can get sick. Jim |
||
|
Title: Re: There are alot of new people here..... Post by Not4Hire on Apr 2nd, 2003, 7:09am ....and I'm one of them....signed on EXACTLY one year ago today....but I found this forum in 1999....clustering alone on a mine site in the top of the Peruvian Andes at 14,000 ft. I couldn't talk back due to corporate firewall, but I could LISTEN......and I cried like a baby to know that there were others with the same MOFO....in the last year, I've posted over 500 times...and a lot of that was bull$hit --born of pain....but I read some really good stuff...and shared some incredible experiences. I've also seen some crazy people come and go.....and made some friends that mean more to me than I can express. I fought with some....got pissed off (and ON)...learned about CH and how insidious the condition is and how many ways it manifests....accepted a LOT of support...and gave a little back....I hope to do better. I fight the beast with oxygen and when it gets TOO hard, with Imitrex injections.....drink a lot of water....and I've been known to eat a 'shroom or two...I'm quite sure it's worth a look--the view can be incredible..... ...so, I say to those lucky enough to have found DJ's gift: FUCKENEH--YER HOME!..... ;D |
||
|
Title: Re: There are alot of new people here..... Post by Wendy1 on Apr 2nd, 2003, 7:38am I am new to this posting message board but definately not new to this clusterheadaches.com. I have been visiting and posting here for as long as it's been around. Unfortunately (and yes I feel guilty) I only visit consistently when I'm in a cycle ~ which has been every 1-1/2 to 2 yrs. I could go on and on, but I won't bore you right now..... my story about being a 'oldie/newbie' |
||
|
Title: Re: There are alot of new people here..... Post by maggie_may on Apr 2nd, 2003, 8:36am Great topic! I'm fairly new too, and I'll throw in my story. I'm 25 and I've been getting severe headaches for years. I can't remember exactly how long, but I remember a week when I was around 12, that I missed school for almost 2 weeks because of the head pain. At that time, when I saw my GP thought I had severe migraine and I had my first MRI. When it came back clear, he said that it was probably a migraine and that if it didn't go away in a week, I needed to see a neuro immediately. In the mean time, I should just take two Advils. All I could think of was that I had a brain tumor. Lucky for me it went away - and didn't come back again until I was 16. This time, my GP told me that I was suffering from sinus/allergy-related headaches and gave me some pain killer that I can't remember what it was called. I do know that it did nothing and I went back to Advils. It went away within a month, only to return again when I was 19. Between 19 and 24, I saw my GP close to twice a year for severe headaches. At first he thought they were the sinus/allergy headaches, then migraine (which I have too), then finally tension-stress headaches. I'd get attacked starting in October and then tapering off in February or March. Sometimes I'd get hit in July-August, but just a day here and there. Over this time I was tried on many meds, but not nearly as much as most of you all. Some of them include: advil (I was up to 6 every 4 hours), tylenol (up to 4-5 every 4 hours), ibuprofen 800mg (scrip) every 4-5 hours, butalbital 3-4 times a day, darvocet 2-3 times a day, percocets (i only took one and it made me very high, so I threw them out), and finally a combination of ibuprofen 800mg and skelaxin 800mg 3 times a day (this made me a walking zombie and totally wasted. I couldn't hardly do anything for myself). This past October was one of the worst hits. It wasn't until a month later that, and after family/SO concern, that I finally decided to see a neuro. I was diagnosed as CH-episodic (so far) in November. I was on Imitrex nasal, but it took 45-60 minutes for it to kick in. I'm currently on 240mg of Verap, Imitrex injections and O2. I've only had to use the injection once so far and I used the tip and shot in 2mg. Worked within 15 minutes! I haven't tried the O2 yet, as I haven't needed to. But, I think I'm finally coming out of cycle. This is the longest one yet - October to April. *sigh* that's a long time and it's making me tired. pfdans maggie |
||
|
Title: Re: There are alot of new people here..... Post by echo on Apr 2nd, 2003, 9:02am I've had these little jewels for nearly 30 years. Over time I have been on both sides of the eposidic / chronic fence. Presently headed for chronic again if this present marathon doesn't break. Meds over the years; Prednisone, depakote, caffergot, sansert, verapamil, O2, imitrex, demeral, codine, stadol, and a host of other crap decades ago that I can't remember. Presently I take stadol to abort. Broke my injector and the dr won't give me another rx for imitrex (too expensive -- as if she's paying for it!) but I'll wear her down in time. Not on any preventatives at this time -- I am on a self imposed cleanzing. Seemed like nothing I used would work anymore and the dose needed was getting to a range of organ damage concerns. I hope that given time I can resume a preventative treatment at much lower dose and higher effectiveness. Thanks for the thread jonny. |
||
|
Title: Re: There are alot of new people here..... Post by catlind on Apr 2nd, 2003, 9:30am I just LOVE this family!!!!!!! Thank you DJ, and FUCKEN EH!!!!!!!!!!!!!!! Look at this thread folks, in the midst of war, and heated debates and differing opinions, everyone has come together in a thread of exposure and pain to share our most intimate battles and pain with everyone who comes along in an attempt to help each other find our magic bullet! N4, you are so right, when I found this site I had a mix of elation and tears. As I cried and cried at the stories, I would exclaim in between, "look at this!!!, this is me!!!" and I knew I'd found home. People who know and understand. I owe my life to this place, and I'll gladly give back in every possible way! Cat This family ROCKS! |
||
|
Title: Re: There are alot of new people here..... Post by Joanie on Apr 2nd, 2003, 9:43am Hi All, What a great group of people! I have visited this site often over the years and have posted a few times. Anyway, I have had episodic clusters for over 22 years and like most of you was misdiagnosed for about 10 years. Was being treated for sinus problems and it wasn't until I had a kip 10 in the doctor's office and scared the heck out of him that I was sent to a neuro and properly diagnosed. My cycles last 3-4 months with an 18 month break in between. I have tried the following: depakote verapamil prednisone cafergot sansert naproxen feverfew imitrex injections, pills and spray fioricet dexamethasone other "pain killers" that I can't think of because they didn't work Years ago the combo of sansert and verapamil worked by decreasing the frequency but not the intensity of ch. Can't take the imitrex injections because of bad reactions and the pill takes too long to work. Prednisone has never worked, and for this current cycle the neuro gave me high doses of dexamethasone instead for four weeks. This also did nothing except add 25 lbs to my weight and reduce my available wardrobe to sweat pants! I am also currently taking verapmil and lithium since they no longer make the sansert. Having some side effects from the lithium (stomach problems, heavy legs, legs buckling). After 6 weeks this combo seems to be finally working. The imitrex spray seems to abort an attack in about an hour, but the doc won't prescribe more than 6 per month because of potential "rebound" headaches, even though I've shown him information against that. So I wind up "saving" the spray for an emergency when I am away from home or work. Nothing else aborts an attack for me. In the past, I've found some relief by using extremely hot water. For some reason, the heat aggravates it this go around and now I am using ice. Haven't tried the O2 yet, because I too smoke and my neuro is convinced that I will blow up my house and everyone in it, the jerk. Thanks for a great site and a great question. Joanie |
||
|
Title: Tenderfoot Trauma Post by Mr.Happy on Apr 2nd, 2003, 10:30am Male - 51 Single (my Wife is married, tho) Mildly Episodic (2 months every 3 yrs) Chronic Whiner (51 yrs) {Personal pendantic dribble/stories edited out for ease of perusal} Got fundamentally _ Pissed Off_ with this crap last fall. Found a thread similar to this one in November, and signed up for my OfficialTM CH.com pocket protector. Learned to ride and rope the bastich with Verapamil, Trex Nasal, Zomig, good friends here, and an all new, improved drug called OXYGEN. Turn ons - Oxygen Turn offs - Anyone that complains and hasn't tried Oxygen Jonny - Just around those times you prove yourself to be an unrepentant, unconscionable rascal, you go and start up something like this. Wotan works in mysterious ways...... Two Virgins for DJ (on the house), RJ |
||
|
Title: Re: There are alot of new people here..... Post by Slammy on Apr 2nd, 2003, 10:36am on 04/01/03 at 21:57:44, Peppermint wrote:
You are right, you don't! so.....? Slammy 8) |
||
|
Title: Re: There are alot of new people here..... Post by CJohnson on Apr 2nd, 2003, 11:06am 10 years episodic. My cycle usually starts in the fall and lasts around 6 weeks. My 1st 2 cycles were erratic, and not too severe. Never saw a doctor. The third cycle had teeth. My first kip-10 had me writhing and thrashing around in the bathroom, begging for death. I try not to think back to that night. I was driven to the ER and they injected me with something (I don't remember what) and my neck felt kind of stiff and tingly. The pain went away shortly thereafter. Shortly thereafter I saw a local neurologist. I explained what was going on and he diagnosed me with cluster headaches. This was 7 years ago and my first visit to a neuro. Pretty lucky to have been diagnosed correctly on the first try. Almost unbelievably, he wrote me a prescription for oxygen, but my insurance did not cover it. He gave me a prescription for Stadol NS, and I got hooked right away. "Is that a headache coming? Better take a snort -sniff - sniff. Better make it 2. sniiiiifff." When the next cycle came I got the Stadol Rx again. This time, it was making me nauseaus. It was during this lousy time that I read an article in the paper about a guy who obtained significant relief from his "severe headaches" by jogging. The next time I felt a headache coming on I threw my Stadol in the garbage and went for a run. Amazingly, I could feel the intensity of the pain decrease after about 20 seconds. I ran until I was out of breath (about 5-10 minutes) and when I caught my breath, the pain was gone! Later on I dug my Stadol out of the trash and used the rest of the script recreationally. Nowadays, even thinking about stadol activates my gag reflex. I used to think I was so unlucky, having to wake up in the middle of the night and jog for 10-20 minutes a few times a day, 6 weeks per year. I now realize how truly lucky I am that I can get relief in this manner. Preventatives tried: Inderal - only took them for 5 days. No effect. Abortives tried: Imitrex tablet, imitrex injections, Maxalt tablets all worked like they are supposed to. Amerge tablets - 1 in the morning and 1 before bed kept me pain free for 3 days. The next 2 days I woke up @ 5am with a headache coming. No effectiveness thereafter. Running - works just about every time, plus its a lot more pleasent than pressing my eye and banging my head waiting for the meds to kick in. Things which had no effect: vicodin codeine naproxyn aspirin ibuprofin hot shower hot bath cold compress Things which worked once to sleep through the night: 1/2 bottle of nyquil Drammamine -Curtis |
||
|
Title: Re: There are alot of new people here..... Post by miCHel on Apr 2nd, 2003, 12:31pm Boy! What a bunch of great stories! As for me, it is almost scary how many of the stories I read here are quite similar to mine. Episodic for 18 years (started at 19). One or two cycles per year, 4 to 8 weeks each, but I've had the pleasure of getting two-year breaks in a few occasions. For the firts twelve years, I was misdiagnosed about 43 times so I went through a list of treatments that were all mentioned in this thread: Inderal, Acupuncture, nasal sprays and about every "regular" headache or migraine drugs... Nothing worked except intense physical activities which could stop a lot of attacks in 15-20 minutes. Don't know if it's because I am older and more tired but it doesn't work anymore... When I was properly diagnosed, the only thing they prescribed me was Imitrex (pills). Since most of my crisis are 30-60 min., it didn't help at all. Then, two years ago, I found this site. I discovered I was not alone and I learned so much stuff and treatments about CH. I was now seeing the light at the end of this f"%$? tunnel. So now, when a cycle starts, I use both Pred and Verapamil (480 mg per day) and Trex shots to abort (never fails to abort an attack in 5-7 minutes for me). Just saw a new neuro last week (By the way, a great big Thank you to Das who pointed me in the right direction. Man, you were so right!) and got myself an O2 presciption. Finally! Because I am (at least I hope) at the end of my cycle, I will wait until the next one to get the right equipment and try it. This neuro also gave me a cortisone-based analgesic shot right in the back of the head. Not a fun injection (but a piece of cake for a Clusterhead) but it stopped the attacks instantly for three days. And I neede the break badly. That's it for now. I just love this place. miCHel |
||
|
Title: Re: There are alot of new people here..... Post by andy on Apr 2nd, 2003, 12:34pm 15 years episodic, (2 1/2 years in remission) When a cycle first hits, i take prednisone. o2 was the first thing that i tried for CH back in the late eighties, I heard that o2 was good for hangovers, so i tried it for my CH and it has worked 90% of the time ever since. I carry my bottle with me everywhere. Im in the Floorcovering Business so i have a large van! I went to my local welding shop and bought a new tank. It was brand new when i bought it. And when its empty i take MY tank back to them for a refill. No worries!! I also have a smaller tank that i trade in for another one when it runs out. I havent tried the trex yet, its been chillin in my fridge for 2 years. Awesome Thread Jonny, Thanks Andy |
||
|
Title: Re: There are alot of new people here..... Post by clustercarl on Apr 2nd, 2003, 1:08pm Sorry to change the subject; why doesn't the chat room work? I'm always the only one listed in the room even though the live chat lists others. They can't see my posts and the thing is never updated??? |
||
|
Title: Re: There are alot of new people here..... Post by totka on Apr 2nd, 2003, 2:15pm ECH since 1982 Misdiagnosed until 1996 1 bout / 1-2 years ; 1,5 - 2 months ; 1-8 attacs/day In the first 14 years I tried all possible painkillers (prescribed by doctor) without any effect (except Valium-Demalgon-Algopyrin combo injection: it was a real KIP 10 but I was ;D lol ;D ) I was diagnosed in 1996 Ineffective: Baclofen, Convulex, Verapamil, Prednison, Lidocain blockade. I tried O2 - no effect. Only the most expensive Imigran injection works (in 3 mins) I'm here since Jan. 2003. Thanks for the "Imitrex tip" and all the support. |
||
|
Title: Re: There are alot of new people here..... Post by captdshea on Apr 2nd, 2003, 2:50pm Episodic from the age of 16 thru age 40, Never meet anyone who could help. No meds. Endless days of looking out the window at the New England spring. After six years pain free, I got hit with CH yet again maybe bought on by jet lag or change in climate from one continent to another, does't matter I found the MB Verp. at 480mg. daily stop them. HOPEFULY FOR THE LONG HAUL. David |
||
|
Title: Re: There are alot of new people here..... Post by echo on Apr 2nd, 2003, 2:59pm Side note to welcome you to the MB David. Thank you for letting us know alittle about you. |
||
|
Title: Re: There are alot of new people here..... Post by jonny on Apr 2nd, 2003, 3:08pm on 04/02/03 at 13:08:05, clustercarl wrote:
Carl, Try this link after 8 pm est. This is the chat most of us use. http://www.headachesupportgroups.com/echat44/public/rmessages.html .............................jonny |
||
|
Title: Re: There are alot of new people here..... Post by Mr.Happy on Apr 2nd, 2003, 3:21pm on 04/02/03 at 14:50:53, captdshea wrote:
Dave...(tap tap tap)........is that you? Last I heard from you was back in mid-December......you were headed for the darkest reaches of Africa (or was it Camden, NJ?)......and weren't you supposed to be back in late Feb? Hope you had a successful Endangered Species Poaching Season. Safe Safari, RJ |
||
|
Title: Re: There are alot of new people here..... Post by Spanner on Apr 2nd, 2003, 3:22pm Hi all Im episodic usually get hit twice a year April and October lasting between 8 - 12 weeks.... After being given Tegretol Retard and alot of other OTC rubbish I found IMIGRAN (IMITREX) luckily it worked for me although it's a bit slow about 25 mins to take effect unluckily it may have been what bought on my heart attack...???? mind you that could have been the fags, kids, bills, work or Cathy..(only joking darling I love you really :-*) I had to put that she packs a hard punch..lol ;D About to try O2 as I think the beast is knocking.... :-/ Great topic Jonny and thanks for all your help. Wes |
||
|
Title: Re: There are alot of new people here..... Post by das on Apr 2nd, 2003, 4:58pm ok .. Started out episodic 11 years ago. Went chronic for a while.. at least I think so. I had a cycle that lasted 5 months without a single day of respite. Actually I had CHs for about 2-3 years before I was diagnosed. Finally found a good neuro who kicked me back to episodic with verapamil and valproic acid. Went into a 2 year remission. After being on verapamil for those years, slowly started to wean myself off... after two weeks shadows and then I went into my most intense cycle ever.. that was last November-December.. Every time I got hit it was a 12, never mind a 10. Then I discovered shrooms. since then no meds.. seems like I am about done with my most recent cycle which ironically was the mildest I can remember. Oxygen also works well for me. Well that's my CH story. Hope you learned from and/or enjoyed it.. |
||
|
Title: Re: There are alot of new people here..... Post by clustercarl on Apr 2nd, 2003, 5:02pm Thank you very much for the chat link, Jonny. |
||
|
Title: Re: There are alot of new people here..... Post by jonny on Apr 2nd, 2003, 5:14pm on 04/02/03 at 17:02:13, clustercarl wrote:
My pleasure, my new brother. If no one is in chat just go on in and someone will show up. .................................jonny |
||
|
Title: Re: There are alot of new people here..... Post by Roxy on Apr 3rd, 2003, 10:51am http://www.smiliegenerator.de/s10/smilies-4121.png |
||
|
Title: Re: There are alot of new people here..... Post by Linda T on Apr 3rd, 2003, 8:20pm Only had 4 episodes since 1984. Two lasted 3-4 months. One lasted 2 weeks and the last lasted 6 months. Tried the following: Fiorinal (?) Elavil (10-50 mgs daily) Prednisone (various tapered schedules) Depakote (500-1000 mgs daily) Imitrex (50 mg tabs) Amerge (1 mg tabs) Inderal (60mgs to 20mgs daily) My "dance" consists of running (really fast) to the shower. Unfortunately, my pain goes from a kip 1 to a kip 9 in about 30 seconds. I like to stand under the hottest water that I can. Also, unfortunately, the water takes awhile to get really hot so that by the time I get in sometimes I'm already at 9. However, at least during the first three cycles, the hot water stopped a ch in it's tracks. Didn't work so well the fourth time around. Stood in the shower anyway since it's the only thing I can think to do. Sounds silly but it's true. I've also tried cold water (didn't work); tried blowing hot air from my hair dryer on my head (didn't work); tried feverfew (didn't work); tried 5-HTP(?) (didn't work); tried ice packs (didn't work); tried running and exercise (didn't work); tried headbanging (but got scared I would hurt myself (LOL) so (didn't work). That's about it. Wishing you all PFDAN always, Linda T |
||
|
Title: Re: There are alot of new people here..... Post by Kcir on Apr 3rd, 2003, 10:55pm I’ve had episodic CH for over twenty years. Most cluster cycles last 3 to 4 months. Remissions are from 6 months to 3 years. In the early years I went to many doctors that only changed my worthless meds every 3 weeks, had sinus surgery, nose surgery, root canals, catscan, MRIs. Nothing helped! >:( At a party in Aug.1994 a friend of a friend noticed I was in pain. He offered to loan me a book that he said helped him with headaches. (He had migraine not cluster.) I read the book that very evening and when I got to the chapter on cluster headaches it fit like a glove (unlike O.J.s) ;D I finally knew what I was dealing with. The book talked about oxygen so the next afternoon when it hit I went out in the shop and used the O2 right out of my cutting torch. That may well have been the happiest day of my life (And I’ve had some good ones.) the pain went from a 9 to 0 in less than a minute. :) I don’t know if any of you ever experienced this kind of joy but I’ll tell you I was on top of the world. Kind of like some of you when you find this web site. A week or so later when the jubilation had subsided I had an appointment with the neuro, I asked him why he had not told me about the oxygen, He said, he would have but he wanted me to try all the meds first. He also told me the O2 was dangerous and he still would not give me a prescription until all meds were exhausted. I got pissed, told him what I thought and walked out. I’ve used industrial oxygen ever since. O2 works fast and every time even if I wait until it’s a 9 or 10, in fact if I use it too soon it will come back. :) BTW there is some danger associated with the use and handling of O2. I’m not a Dr. so I can’t comment on the medical part but I can comment on the handling part. If any of you are refilling or transferring oxygen yourself and don’t fully understand the dangers please contact me or someone else that does. Do not purchase parts at your local hardware for use with oxygen!!!! I’m not really a newbe I just didn’t post for a couple years. Don’t remember when I first found this site maybe 1997 but that was another great day. This was a good idea jonny. PFDAN to all! Rick T |
||
|
Title: Re: There are alot of new people here..... Post by Frank on Apr 4th, 2003, 1:00am I've been episodic since about 1989... I think. Nothing from 1982 to 1989 that I remember. And I used to have really bad headaches from 1977 to 1982 always behind my right eye but an optomotrist diagnosed that as astigmatism and gave me some glasses that didn't work. So I really don't know how long I have had clusters. In '89 I knew they were clusters, but my doctors thought they were migraines, tension headaches, sinus headaches or sinus infections. That crap went on for years. Finally about seven years ago, my GP diagnosed cluster headaches. Starting with my GP's "real" attempt to treat cluster headaches, I have tried: Vicodin - doesn't do shit Demerol - doesn't do shit. don't care either ergotamine - didn't work most of the time, and bad side effects Cafergot - see ergotamine above. Sansert - worked for a couple of cycles, then didn't work verapamil - worked several cycles, but not this time prednisolone - knocked out the last cycle... but not this one Depakote - didn't do shit Oxygen - works almost everytime for Kip 7-8's or less Topomax - currently 50mg/day. Too early to tell yet... been on it a month. Maxalt MLT - works for most Kip 7's or less Maxalt tablets - don't work unless I crush them with a pill crusher. then only for mild or moderate attacks. Imitrex tablets - see Maxalt tablets above. Frova - see Maxalt tablets above. Zomig - see Maxalt tablets above. Stadol NS - worst mistake ever! worse than the CH attack. Imitrex nasal spray - mixed results. takes a while... and since clusters block my sinuses and my nose runs... half the spray runs down my throat or I blow my nose and waste the spray. Imitrex injections - 2mg to 3mg works everytime even for the bad ones |
||
|
Title: Re: There are alot of new people here..... Post by pigeon on Apr 4th, 2003, 2:25am Hey Jonny, props to you!!! Been episodic since 1989. Get hit about every 12 months, nothing to do with time of year, just about 12 months or so after a cycle ends. Started with Sansert, killed the cycle but also caused some kidney pain. Next few cycles I went on the Prednisone, worked then stopped working, seems like the beast can adjust to that which works. Last few cycles I have used a combo of Topamax and Indocin with a side of Stadol NS to try and quell the beast. Topamax works for me, you just have to deal with some short-term memory lapse's.(with notebook I travel) Thanx to Mr. Happy's urging I tried O2 for the first time and if you have not gone there, you should, it works. As far as exercise or hot showers, I cannot find a non-drug related way to stop the pain. Hope to see you in July. Joe P. 8) |
||
|
Title: Re: There are alot of new people here..... Post by Jade0395 on Apr 4th, 2003, 10:07am Hi All, I've been here on/off the last few years ..I just don't always like to post. I'm 8 years now episodic ch I never really listened to stay away from barbs or narcs as it seemed to be the only thing to help me cope (I've been on prednisone, inderal, zomig, veralin pm, elavil ...ugh too many to list with little or no success) but after you go through drug withdrawal ( what a bitch) I've come to see the light :o Now I am currently taking Neurontin 300 mg/ 3x per day I take a 81mg aspirin a day & 1mg Folic acid/day (reason for the aspirin and folic acid was from a TIA back in November) The Neurontin at 900mg/day works great for me..it at first didn't totally take away the ch but it was tolerable enough for me to use one of those old fashioned corn bags, heat it in the microwave and use that on my head and then the pain would go away. I had to do that for about 1-2 weeks ..but I'm happy to report the cycle was cut short and no return as of yet in 6 weeks (knock on wood) Side effects of the drug were kind of lousy at first but in time you adjust to them. My neuro wants to keep me on it for 2 years, he says then it loses its efficiency but I'll take any time I can get. SO if you haven't tried it yet, ask your doc ..according to mine, it's a pretty safe drug to use and you can go up pretty high on the dosage but I like to keep mine as low as I can. Plus you can still use any OTC drug, use imitrex, zomig, all those triptans. Take care :-* |
||
|
Title: Re: There are alot of new people here..... Post by S@ndman on Apr 10th, 2003, 12:32pm First of all I would like to express how much I admire all you chronics who deal with this beast continuously. Before I found this MB I thought I was never going to be able to deal with this. Now I realize I'm one of the lucky ones. I'm episodic with 2 year remissions. It's been like that for 17 yeras and I'm 37 now. I live in Brazil, and unfortunately I have very little acces to the newer meds. My doctor had never heard about Imitrex until this morning. Although my pain is pretty sever (I would have to put it between Kip 8 and (rarely) 10), I felt strangely suicidal 3 nights ago, when I was hit by the strongest and longes attack I've ever had. What works for me: Cold shower (and I mean COLD!!!) Jogging (yes, at 2 AM, you know what I mean) I think marijuana works (preventing), but I'm still not sure. I'm really interested in taking O2, and I'm not confortable with having to take medications on a continuous basis. Good luck to you all! S@ndman |
||
|
Title: Re: There are alot of new people here..... Post by Jabeen on Apr 11th, 2003, 7:57am I consider myself a very lucky person in this crowd-I have only had 2 "episodes" in my whole life. The first one lasted about 9 months-only at night-but not every night, but often several a night. I did find a med that helped me. So I started to believe I would be chronic-then they ended and stayed away 5 YEARS! I was elated and began to believe they were gone. Then they showed up again last year. They have now been here about a year this time. Again-I am lucky. I have a med that seems to work for me-it hasn't eliminated them, but keeps them mild and less occurences. They started out one or two a week (night), escalated a bit til med kicked in. Now they have gone down to about one every 2 weeks- nontheless are not gone altogether. When I was diagnosed they tried Verapimil and Inderal-it takes weeks to build up to certain dosages and wean off to start again-frustrating when its not working and pain is still there. Wellbutrin worked for me. I don't see it here as working for anyone else-but my neuro heard that some people had success on it -SSRI- and it did work for me at 450 mg. per day. Its such a turkey shoot as to what will work for you- |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |