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LeLimey
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Re: WELCOME!
« Reply #125 on: May 11th, 2005, 9:16am » |
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on May 10th, 2005, 8:52pm, dis wrote:| Hi, I am in the middle of a ch episode...have been pain free for five years. Just saw a neurologist who tried to persuade me that my headaches weren't cluster headaches. Help. I need a good doctor in the Boston area. Does anyone have a suggestion? |
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Hi Dis, nice to meet you and I'm sorry you are in pain. Take the cluster quiz on the left. There ARE other conditions which are very similar to CH but thankfully have meds which work better so you never know.. you might be lucky. Some like CPH are rarer than CH and so tend to get misdiagnosed as CH as they are so similar. Its worth doing. Read, read and read and print off anything that will help. I know Don recommended a doc for you on your other thread.
The rule is though that you have to let us know how you are getting on okay?!
PFDANS
Helen
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LeLimey
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Re: WELCOME!
« Reply #126 on: May 11th, 2005, 9:21am » |
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on May 11th, 2005, 6:04am, alchemy wrote:| I just joined this site today. I wish I had known about it years ago. I'm an extreme chronic clusterhead. I'm in the 5th month of a 5 cluster a day cycle. I'm totally worn out. I feel the most sorry for my family. The docs are sending me to a surgeon, any info on that ? |
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Hi alchemy nice to meet you even if it IS here!
a surgeon? yikes.. that sounds a bit extreme but obviously I don't know your full history. Maybe you could tell us a bit more about yourself and the other meds, threapies you have tried? Have you tried o2? I personally swear by it. Have a look at all the other info here and print off whatever you feel would be helpful to discuss with your doc. Its important you do that cos of potential reactions etc obviously.
Just remember, we all know exactly how you feel, we've all felt that desperation and the relief I felt when I found this site.. well I'm sure you know 
Vent anytime, ask all the questions you want and be welcome,
I hope you get some PF time soon. I'm looking forward to hearing more from you
Regards
Helen
edited 'cos I can't spell and I talk too much!
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markca
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Re: WELCOME!
« Reply #127 on: May 12th, 2005, 6:13pm » |
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Well, cool... There is comfort knowing there are others out there. Just joined. First post. Allow me to introduce myself. I'm 37 and have had CH for as long as I can remember. If I had to guess, it probably started late elementary/middle school. Only got properly diagnosed about 7 years ago. It's amazing how little doctors know about this.
I'm in the middle of a cluster. After reading through the site I realize I'm lucky. I will go about 18 months between clusters. It's been 2 years since the last one. They start off slow- CH- 5 days- CH- 4 days- CH-3 days, etc. Then every day. Then they taper off. Total time about 6-8 weeks with 3-4 weeks of bad, daily CH's. Used to be at the exact same time- I could set my watch by them. This time it's different. They're not at the same time and while I used to get no more than 1/day, I've had 2/day a few times.
Pain is unbearable, but short. Total time around 60 minutes. But completely debilitating. Always right side. I honestly don't know why there aren't more people who off themselves. I have truly been tempted during really bad CH's. I feel for you chronic sufferers out there.
Imitrex helps, but only within a very short window. If I don't take it as soon as I feel it coming on, I may as well not take it at all. Haven't tried injection (didn't know there was such a thing 'til I read about it here.) I have the 100mg tabs. Imitrex will take a 10 to an 8 or so. Will still get breakthrough 10's from time to time.
My secretary says, "yeah, I get migraines too." "No, it's not a migraine," I say. Nobody understands how bad the pain is. I read where CH's can be 100 times more painful than migraines. Yup, that's about right. You never read about a migraine sufferer trying to stick their thumb through their temple.
Wife is very supportive. I have a very high pain threshhold. I once played two innings of baseball with a broken tibia, then drove a stick-shift home. Sure, my leg hurt like hell, and I couldn't put weight on it, but I had no idea it was broken til I couldn't walk the next morning and finally went to the doctor.
Wife has seen that and then me writhing on the ground crying, moaning, praying, asking why me (I thought I was the only one who did that), trying to push my thumb through my temple thinking that will make it go away, seeing my face totally disfigured because the right eye is shut and droops and waters so profusely that I swear it has exploded. She then figures the pain must be pretty bad.
I can't touch alcohol while I'm going through this. Red wine is death. And I love red wine. I got a CH after a few sips of red wine one time that was so bad, just the thought of red wine when I know I could have a CH makes me sick. I can normally have a single, vodka drink after a CH, but abstaining this time because I'm having more than 1/day.
Long post, I know, but it's very cathartic to be able to write this knowing that there is a community that truly understands.
Thanks for listening.
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LeLimey
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Re: WELCOME!
« Reply #128 on: May 12th, 2005, 6:38pm » |
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Welcome Mark, its nice to meet you even while I'm sorry you have to be here. You've already learnt something I see! Imitrex injections work extremely fast compared to the tabs, 5-10 minutes and there are nasal sprays too which take slightly longer for me but which some people swear by. One thing we all learn fairly early on is that works for one of us will not work for another which makes CH a pretty tricky little blighter! Have a good look around and read up as much as you can. There are some fantastic treatments available and some alternative type treatments which alot of people have had alot of success with. I'd strongly recommend you discuss any options with your doctor. None of us are doctors and we don't know your medical history so you do need to discuss combinations with your doc.
I'd recommend O2 as an abortive highly. It works fantastically for me and I swear by it (and while taking it but thats another story!)
Get your wife to come and have a look around too. We have a fantastic section especially for supporters to get some support from and to learn more from but she IS welcome on every part of the board.. we all know how much we need our supporters and I'm very glad you have one.
Take care, let us know how you are getting on (that bit is obligatory and remember, you aren't alone okay?!
Regards
Helen
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alchemy
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Re: WELCOME!
« Reply #129 on: May 13th, 2005, 5:57am » |
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Thanks for the kind words. I've had clusters about six years now. at first they treated with lithium and pain pills I can't remember the names of. I moved from Phoenix to Maine and the nueros up here have tried verapomil I'm taking about 960 mg a day nuerontin, imitrex injections stadol oxy's nothing will break the cycle. I can't sleep can't work and obviously can't spell sorry about the grammar. my memory is gone. I get lost in my own neighborhood. trying to hang in, but it gets harder everyday. tried suicide in nov. obviouysly didn't work
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markca
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Re: WELCOME!
« Reply #130 on: May 16th, 2005, 6:44am » |
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[quote author=LeLimey link=board=knowya;num=1076441006;start=125#128 date=05/12/05 at 18:38:23]Welcome Mark, its nice to meet you even while I'm sorry you have to be here. You've already learnt something I see! Imitrex injections work extremely fast compared to the tabs, 5-10 minutes and there are nasal sprays too which take slightly longer for me but which some people swear by.........
Thanks for the words. The imitrex nasal didn't seem to do much for me. I'll see if I can try the O2. I'm also really wanting to try the injections.
The Beast has not visited in a little over 24 hours, so I believe I'm on the downside now. We'll see...
I sent my wife the link to this site and she's lurked around a bit. It has helped her understand a bit.
Thanks again!
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LeLimey
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Re: WELCOME!
« Reply #131 on: May 16th, 2005, 8:37am » |
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Hi again Mark, I'm pleased to see you are ready to try new treatments and I really, really hope your cycle is on the end now too. The imitrex injections will be a great help to you and as for the o2.. well.. I'm really pleased you are going to give it a go as I can't praise it enough.
Hello Mrs Mark! Its nice to meet you too. Come along and say hello, we don't bite even if we seem like a bunch of nutters!
Take care of yourselfs, PFDANS and don't forget to keep us updated okay?!
Best wishes
Helen
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Jillian00
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Re: WELCOME!
« Reply #132 on: May 17th, 2005, 2:27am » |
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Hello everyone,
I'm sure glad I discovered this website--thought I was suffering alone for what has seemed an eternity!
I am a 26-year-old female with a history of migraine headaches, but this January when I had my first episode of cluster headaches I discovered what REAL pain is!
Reading some of these posts gives me real hope for overcoming this Madness--
When I read messages from some of you who have suffered for 20 years i am in total awe!! I have been diagnosed by 2 family practice md's a neurologist and and internal medicine doctor--I have tried SO many medications and really have found no relief. I am now taking narcotic medication and feel extremely guilty because i am only masking my pain--I feel like I am not strong enough to handle it--I am waiting to see a different neurologist but must wait 2 months to get in. I am going to see my family doc tomorrow I am worried that he will not refill my narcotic medicine--my worry is not that I will not have narcotics but that I will not be able to handle the pain. I am right in the middle of a cycle. Any ideas on how to cope with pain?
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LeLimey
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Re: WELCOME!
« Reply #133 on: May 17th, 2005, 3:29am » |
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Hi Jillian, I'm sorry you are suffering - we know how it feels 
Narcotics are not the best way to go for CH. From what I understand of others expereiences they might at best mask the pain but they won't get rid of it and its just left there lurking waiting to come back. Have a look on the meds board for recent posts on this.. there are quite a few!
Read up on what is here for better CH meds. You want to be looking at abortives and preventatives. Abortives work on individual hits and prevents on the cycle.
As a "for instance" I'm taking verapamil as a prevent and using o2 (which I can't recommend enough!!) for an abortive. Imitrex injections are a good abortive too but they aren't suitable for everyone. One thing you will learn about this beastie is that no two people get it in the same way and so no two people take the same combo/dosage of meds. Its a bit of trial and error but I know you will find your silver bullet!
Check out the kudzu thread as well under the meds and therapies board. ALOT of people have been having outstanding success with that and also psilocybin and LSA seeds. I would strongly urge you to discuss any of these with your doctors as they know your full medical history and we don't. None of us here are doctors.. but we are knowledgable about this buggering affliction and we do care and we WILL help and support you!
Ask all the questions you want, there is always someone around. Oh and it is COMPULSORY that you come back and let us know how you get on okay?!
PFDANS (pain free days and nights)
Helen
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Gavilan
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Re: WELCOME!
« Reply #134 on: May 18th, 2005, 9:34pm » |
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Hello fellow suffers,
I have had head aches for all my life and they have probably been cluster head aches. It has been refreshing to find others with the same symptoms. Mine are behind my left eye, although for the last two years or so, I have had them behind my right eye too. I have not found a trigger or a good preventative treatment. The neurologist had me taking Inderol but I found that it made no difference. It had the side effect of lowering my heart rate to below 40! For treatment, I find that the same medication does not work every time. At the moment I am taking Relpax, but it knocks me out terribly. Last night I had a 7+ episode and I did not get relief for several hours after taking the medication.
My episodes seem to be occuring weekly. Very often I will wake up with a 2, and it will go away as I shower.
I also suffer from depression and I cannot help wondering if the demons are linked. I am intrigued to find out if anyone else shares this.
I also happen to be a devoted Christian so if there are fellow suffers who share my faith, I would be glad to hear from them too.
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Margi
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Re: WELCOME!
« Reply #135 on: May 19th, 2005, 9:36am » |
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Hi Gavilan,
Sorry to hear you're on a bumpy ride right now. A couple of things you say in your post make me wonder if you've got an accurate diagnosis of cluster, though. You say they're hitting weekly? And that they are lasting for hours and hours? I'm wondering if you're maybe having migraine as opposed to cluster. Those two attributes really are more indicative of migraines, which also suck really bad (I'm a migrainer, my hubby is a clusterhead).
I see you're in Delta - we also have a Canadian cluster headache website and we have a lot of sufferers in your area. One of them might be able to direct you to a cluster knowledgeable neuro that can help you make a plan for pain management. Please feel free to come on over and introduce yourself!!
http://www.clusterheadaches.ca
We have a message board just like this one as well:
http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl
Depression and headaches are quite often companions - you're sure not alone with that. Both cluster and migraine are semi-manageable with different treatment plans, but there is no cure for either yet. That's why these support groups are so vital to everyone's survival.
Hang in there, friend - my prayers are with you.
Margi
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allnight9
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Re: WELCOME!
« Reply #136 on: May 21st, 2005, 10:59am » |
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Hey, I think God lead me to this site, I have been battlin the beast since I was 18, now 42. I just started up after 18-20 months pain free, nothing like that 1 am wake-up call and a shot of imitrex. I found lots of new ideas here. Keep up the fight
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LeLimey
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Re: WELCOME!
« Reply #137 on: May 21st, 2005, 11:59am » |
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Hello allnight and welcome! I'm sorry you have to be here but I'm very glad you have found us. Tell us a bit more about yourself and your cycles.. how long they last, do you use any prevents etc? There is loads of advice here which you can read up on and my personal recommendation to you is that you consider O2.. its been a lifesaver for me and I love it. Have a good old read, ask all the questions you want and (this is VERY important!!) Let us know how you are doing okay?
Take care
PFDANS
Helen
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allnight9
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Re: WELCOME!
« Reply #138 on: May 21st, 2005, 8:59pm » |
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Thanks for the welcome, I have 3-4 CH a day at the peak of my cycle with what I call 2-3 transient headaches (small ones I can handle without meds). Then I end up with about 2-3 real screamers that take me to the ER for a shot of Demirol or something that knocks me out cold. I have used O2 but my Dr. is unwilling to prescribe it and I not sure how else to get it. I've been to 4-6 nuerologists I don't remember the number. 2 retired, 2 could not do anything for me and 1 thought I was an addict. Althought I do use Fiorinal with codiene for my daytime ch's and it works well enough after 30-45 minutes. I have had only 1 CH today and I am hoping that my cycle is over, its been almost 2 months. pray for me as I will for everyone that suffers from the beast. Keep up the fight and never ever let it beat you...Phil
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pattik
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Re: WELCOME!
« Reply #139 on: May 21st, 2005, 11:24pm » |
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Welcome to Clusterville, Allnight. There is a great deal to learn on this site, and you should research the O2 info (link on the left side of the page). Many members of this board use O2 very successfully, and there is good information which you can print out and take to your doctors in order to get the rx you need. It is also important to use the correct LPM and the non-rebreather mask. Stick around and keep posting, because there are many headache gurus here who can give you a lot of help regarding meds as well as the proper use of the O2. Here is one very good link that can help get you started with info--one good source to print out. http://www.brightok.net/~mnjday/chtherapy.pdf
Good luck with your research and stick around to let us know how things go. PFDANS to you. Pat
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Colin Castle
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Re: WELCOME!
« Reply #140 on: May 24th, 2005, 9:04pm » |
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Hey everyone,
I'm 30 years old and I've been getting episodic cluster headaches since I was approx 21. My episodes generally last approx 3-4 weeks. I get maybe 2-3 attacks during the day (kip 3,4,5) and 1-2 attacks at night after falling asleep (kip 7,8,9). I fear the nighttime attacks so much that I try to avoid sleeping, and when I do sleep I try and do it sitting up in bed. As you all probably know, it doesn't work.
My father also suffers from this monster, though since he hit his mid-fifties he's only gotten it once. Still, he's been a great source for me to talk to as he has 30+ years of experience with this under his belt.
I generally get my episodes at the start of the second week of November. One thing that worries me is that over the last couple of years it's been jumping around quite a bit. A few of years ago, I had my episode in August. The year after I had it in November as per norm. Then last year I had nothing at all. I personally think I missed it because of the stress of planning my wedding. Anyway, This year is the first time I've gotten it in May. This is worse than the anticipation of November because now I never know when I'm gonna get hit and if I'm going to start getting them more than once a year as I do now. My dad can't remember this happening to him.
Speaking of my dad. I remember as a little boy, waking up and seeing my dad sitting on the edge of the couch in the dark holding his head and rocking back and forth. It's kinda traumatic for little kids, or it was for me anyways.
One really frustrating aspect of cluster headaches is the fact that there are very few physical symptoms other than my really red, watery, and droopy right eye. For the amount of pain that I'm feeling, I should have something more pronounced, like an alien head popping out or something, just so people will really understand what I'm going through.
For treatment, I have the following:
1. Hot showers (I don't know why, but it sometimes aborts kip 2,3 and 4's)
2. Long walks (for the kip 7,8,9's and generally at night time thank god, because I look like i'm drunk)
3. Rocking back/forth in dark, holding area near right eye and making misc noises (when they get bad)
4. Music. (In conjunction with walking, or rocking back/forth)
5. Every year there is a different "tripan" that my doctor want me to try... none work, not even those fast acting under the tongue things... though to be fair, none of the above I've mentioned really does anything for a kip 7+
6. There is another medication my doctor prescribes to assist in reducing the frequency of my attacks, I've not used it this year because I don't really think it works.
7. I've been reading about Kudzu and Meltonin on the message boards so I went out today and bought some of each. I figure I'll take x2 tablets of Kudzu (nature's way) three times a day as recommended on the bottle and 2-3 tablets of Melatonin (wisdom of nature) 30-45 minutes before going to bed. I really hope this helps me.
A couple of things I DON'T do that I've seen some people post about are:
1. Bang my head or hit myself.
2. Consider suicide.
I'll assume that the reason I've not considered the above is because my cycles tend not to last more than a month. It may be different if I were suffering for month's on end or if I were chronic.
Has anyone else gotten really superstitious about thier headaches? For example, if I see any mention of an episodic switching over to chronic in any message board, I immediately blur my eyes and skip down the page. Also, when I'm not in cycle I try not to think about it at all, for fear of bringing it back. It's silly but I can't help it.
I'm sure there is more to say, but I feel like I'm going to get one in a minute... Can I get an episode from staring at the screen too long?..
Thank you for this site,
bye.
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I'm freakin' dying here!!!
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AGILLIAM3
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Re: WELCOME!
« Reply #141 on: May 25th, 2005, 2:30pm » |
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HELLO I AM NEW TO THE SITE AND MY CH ARE A LITTLE DIFFERENT. I GET HEADACHES THAT LAST AT THE MOST 45 SECONDS BUT THE COME AND GO ALMOST EVERY 2 MINS. THEY WAKE ME UP AT NIGHT, MY NOSE AND EYES RUN, I FEEL AS IF I AM ON THE VERG OF AN ANNYREISUM. I HAVE HAD THESE HEADACHES FOR ALMOST 4 YEARS AND IT AFFECTS MY WORK, PERSONAL LIFE EVERYTHING I DO I CANT EVEN DRIVE BECAUSE MY SIGHT LEAVES ME WHEN I AN HAVING THE HEADACHES. WHAT I JUST CANNOT UNDERSTAND IS THAT EVERYONE ON THIS SIGHT HAS HEADACHES THAT LAST FOR ABOUT 30 MINS OR SO MY HEADACHES LIKE I SAID LAST 30 - 45 SECONDS EVERY 2 MINS. ALL DAY. I CANNOT FIGURE OUT WHY. I HAVE TRIED EVERYTHING AS A REMEDY EXCEPT INJECTIONS AND O2 ANY SUGGESTIONS?
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thomas
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Re: WELCOME!
« Reply #142 on: May 25th, 2005, 6:17pm » |
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on May 25th, 2005, 2:30pm, AGILLIAM3 wrote:| HELLO I AM NEW TO THE SITE AND MY CH ARE A LITTLE DIFFERENT. I GET HEADACHES THAT LAST AT THE MOST 45 SECONDS BUT THE COME AND GO ALMOST EVERY 2 MINS. THEY WAKE ME UP AT NIGHT, MY NOSE AND EYES RUN, I FEEL AS IF I AM ON THE VERG OF AN ANNYREISUM. I HAVE HAD THESE HEADACHES FOR ALMOST 4 YEARS AND IT AFFECTS MY WORK, PERSONAL LIFE EVERYTHING I DO I CANT EVEN DRIVE BECAUSE MY SIGHT LEAVES ME WHEN I AN HAVING THE HEADACHES. WHAT I JUST CANNOT UNDERSTAND IS THAT EVERYONE ON THIS SIGHT HAS HEADACHES THAT LAST FOR ABOUT 30 MINS OR SO MY HEADACHES LIKE I SAID LAST 30 - 45 SECONDS EVERY 2 MINS. ALL DAY. I CANNOT FIGURE OUT WHY. I HAVE TRIED EVERYTHING AS A REMEDY EXCEPT INJECTIONS AND O2 ANY SUGGESTIONS? |
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Sounds like CPH or SUNCT. Have you tried indomethicine?
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Jonny
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Re: WELCOME!
« Reply #143 on: May 25th, 2005, 6:20pm » |
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on May 25th, 2005, 6:17pm, thomas wrote:
Sounds like CPH or SUNCT. Have you tried indomethicine? |
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Ditto....do a google search on what Thomas posted.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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E-Double
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Re: WELCOME!
« Reply #144 on: May 25th, 2005, 11:49pm » |
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SUNCT:
http://www.ninds.nih.gov/disorders/sunct/sunct.htm#What_is
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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brainpain101
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Re: WELCOME!
« Reply #145 on: May 26th, 2005, 3:30am » |
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Hi, brand new to this site. Just trying to post my first message. Spent the last six hours trying to learn about my beast and ended up here after 4 hours of research. I am positive that my condition is connected to the trigeminal nerve. I believe I am currently a chronic cluster headache sufferer of 5 years. I was just a come again gone again cluster sufferer for the 7 years before that. The only symptom that I have never had is that leaky sinus problem. Otherwise, it all sounds extremely similar to what I experience. So if anybody is out there, HI.
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Rickf
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Re: WELCOME!
« Reply #146 on: May 26th, 2005, 8:08pm » |
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Hello everyone. Sorry to see that there are so many people that go through clusters. I've been dancing with the beast for 29 years worth of episodes. Woke me up 3 times last night. I'm going to spend some time going through this website and see what I can find or if I can help anyone. As much as I hate to see so many going through these it should at last be good to be able to talk to people who really understand.
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KMT
New Board Hall of Famer
Fun loving @ heart
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Re: WELCOME!
« Reply #147 on: May 27th, 2005, 7:19pm » |
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Rickf
Welcome, sorry that you had to seek us out and are a sufferer yourself, but very glad you found us.
This place is loaded with information. I still consider my self new even after a month and a half just cause I am still learning a lot.
Be a sponge and soak it up.
PF wishes......Kim
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aka...................................................... KimY
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KMT
New Board Hall of Famer
Fun loving @ heart
Gender:
Posts: 819
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Re: WELCOME!
« Reply #148 on: May 27th, 2005, 7:25pm » |
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Brainpain101
Welcome to the family.
You don't have to have all the symptoms to be considered a CHer but you end up having a majority.
Take a look at the left for meds and treatments and take it to your doctor. Get what you need. Arm yourself and knock the beast out.
We all are here for you. Ask anything you want someone is sure to be able to help and that goes for all newbees.
PF wishes.......
Kim
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aka...................................................... KimY
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marlinsfan
New Board Hall of Famer
I love this place!
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Posts: 876
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Re: WELCOME!
« Reply #149 on: May 30th, 2005, 5:56pm » |
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I'm new too. Signed up this morning, after reading all night.
I thought I had migraines, but now I know better. I guess I'm luck I'm not chronic. I thought my condition was about as horrible as it gets, so I can't imagine going through this stuff all year long. I was PF for 2 years, and 6 weeks ago started a new bout.
I hope to learn and share, and pray that someone somewhere finds a cure to save us all.
I live in Hollywood, FLA. If anyone knows a good neuro, please let me know. Mine retired 3 years ago, and the new one assigned to me just continued what the old one was doing. I'm going to see him tomorrow, coincidentally, and plan to talk to him about CH.
GOOD DAYS AND PEACEFUL NIGHTS TO EVERYONE.
Jose
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