alchemy wrote on May 11^th, 2005 at 6:04am:


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!

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

[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!

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?

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.

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

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

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.

Quote:

Sounds like CPH or SUNCT.  Have you tried indomethicine?

SUNCT:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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.

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