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        New Message Board Archives >> 2002 Posts >> New to this site.
        
(Message started by: Silver_Dolphins on Dec 15^th, 2002, 3:28pm)

Title: New to this site.
Post by Silver_Dolphins on Dec 15^th, 2002, 3:28pm

After three and a half months of pain and doctors visits, ct scans, and a forthcoming neuroligists visit, I found this site. What a God send.

Three years ago, I had my first bout with what I thought were sinus headaches. I went to the doctor, got put on meds and the pain didn't stop. I got a ct scan. Normal. Was set to go to the neuroligist, then the headaches went away. So, I cancelled my neuro visit.

This time around, same basic thing. Except I remembered a TV show (dateline, 60 minutes, etc) that dealt with CH a/k/a suicide headaches. So, yesterday, I decided to do some research, took the quiz and am 90+% sure it is CH.

I will try some of the treatments I have found posted by you folks (www being the main one) until I can get to the neuroligist.

I look forward to talking with folks that understand.

Title: Re: New to this site.
Post by jonny on Dec 15^th, 2002, 3:34pm

Glad you you found us/ hate that you have to be here but.....do you have a name?

........................jonny

Title: Re: New to this site.
Post by StanTheMan on Dec 15^th, 2002, 3:37pm

Welcome Silver D!!

Sorry you had to find us, but glad you're here. You are among friends who understand your pain, frustration.

Browse, browse, browse the site. Lots of helpful information.

Hope you find relief soon and your visit to the neuro goes well. Hang in there!

Regards!

StanTheMan :D

Title: Re: New to this site.
Post by Silver_Dolphins on Dec 15^th, 2002, 3:40pm

Thanks, my name is Barry.

Title: Re: New to this site.
Post by domm on Dec 15^th, 2002, 3:43pm

Barry - welcome to clusterville. Take a peek at the OUCH website also. Tons of info there, also. After you've read all this, you'll know more than most docs about CH.
I use Oxygen, Imitrex as abortives and Verapamil as a preventative. Lots of other techniques for managing this horrid condition, tho. Hope you find the right set of stuff that works for you
domm

Title: Re: New to this site.
Post by jonny on Dec 15^th, 2002, 3:43pm

Thanks barry,

Ones handle only goes so far, A name goes forever.

We can help and will help all we can.

............................jonny

Title: Re: New to this site.
Post by SommelierCH on Dec 15^th, 2002, 5:08pm

Greetings Barry,

As always a double edge welcome. Sorry you had to find us, but glad you are here. Put on a hard hat, mouth guard and thigh high boots and wade right in.

What works for me is a triptan, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, under the tongue dissolving tablets) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when I’m asleep I can’t feel the shadows increasing and I wake up with the Big One. Jonny clued me in that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks. (thanks again, Jonny). Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.

If you keep a headache Diary, apparently it helps some Doctors and Neurologists to diagnose your condition. Here are links that give info and ready made forms for your journal. This should give you some much needed ammunition prior to your office visit and, it should help speed up the process.

Form for Headache Diary:
http://www.headaches.org/professional/educationresources/PDF/headache_diary.pdf

http://www.headaches.org/professional/educationresources/PDF/howto_diary.pdf

The cumulative amount of knowledge residing within these people on the board, is amazing. Give them as much info about your problem (see “Hints for your first post”) and they will be able to help that much more.

Good Luck and PFDAN,
David J.

Title: Re: New to this site.
Post by cootie on Dec 15^th, 2002, 6:16pm

Hidie ho barry.....welcome ta ya...........Pam

Title: Re: New to this site.
Post by dodger on Dec 15^th, 2002, 6:41pm

;DGreetings Berry. I'm new to this site myself,just found it a few days ago. Your lucky you found it so soon in your career. It took me 20 yrs.! What are your symptoms? There are some pretty basic signs that indicate C.H.'s. For myself, They usually hit be late in the evening, and for sure about 1 or 2 hrs. after Iv'e gone to sleep. Nowadays they hit me after a short nap. Pain is always on one side of the head, just above and behind the rt.eye. Steady pain coupled with discharge(ughh) from rt.nostril. Shortly after nose stops running, I can look for the pain to dissiapate rather quickly. Have found that applying ice to my head and standing in front of a fan seems to help to mask the pain. Glad you found the site, and good luck. Dodger.

Title: Re: New to this site.
Post by Charlie on Dec 15^th, 2002, 7:48pm

Welcome Barry and you too Dodger. I haven't been hit in years but I was flabbergasted to find so many others and different types.

These characters are right. There is more knowledge here than your MD will likely have. Here is a great link to Simon's letter describing clusters to others. It's worth copying:

http://www.ouch-uk.org/ch/note_colleagues.cfm

Here is my technique that I learned 30 years ago:

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: New to this site.
Post by Mark C on Dec 15^th, 2002, 8:07pm

Welcome Barry

http://www.animatedgif.net/welcome/icerwelcome_e0.gif

Title: Re: New to this site.
Post by OneEyeBlind on Dec 15^th, 2002, 8:52pm

Welcome to the board Barry. There's plenty of good info and good people here. Pull up a chair and start reading ..... you'll be surprised at how much info is here !!! Anything you can't find .. just ask and someone usually can point ya in the right direction.

Title: Re: New to this site.
Post by Opus on Dec 15^th, 2002, 9:57pm

Try some of these to you can get to the doc.

http://www.clusterheadaches.org/resources/non_script_treat.htm

Opus :P

Title: Re: New to this site.
Post by Drk^Angel on Dec 15^th, 2002, 11:12pm

Welcome to the board! Sorry that the beast is crushing your cranium into oblivion in the gravitational vortex between two colliding black holes. Good luck!

PFDAN.................................... Drk^Angel

Title: Re: New to this site.
Post by Roxy on Dec 16^th, 2002, 1:42am

Welcome Barry,

Glad you found the site, and I hope it helps you like it did me. I'm sorry I have no words of wisdom on your meds, but I'm still new at this, and the doctors are really messing me around still. Hope you stay pain free.

Tracey

Title: Re: New to this site.
Post by Silver_Dolphins on Dec 17^th, 2002, 5:27pm

Thank you all for the warm welcome.

Someone asked what my symptons were. Well, the last few days I have had shadows (kip2-kip3) all day. Of course, I am terrified of sleep, because that is when the Beast wants me to dance with him. While suffering the attack, I get the droopy eyelid, sinus congestion (which oddly clears right up when the Beast bores with me), teary eye, pain in the temple area shooting to the gumline. My neck is sore, like I might have slept in a bad position (probably trying to find a level of comfort), my ear is also aching more so in a kip5+ than with these shadows.

I am on week 15 of this cycle. My last cycle was about three years prior and leasted about three months. Of course, then I did not know the extent of my condition.

The kip 10's have subsided for now, so I am hoping to God that I am nearing remission (sp).

I don't know how you Chronics do this. I guess the same as us Episodals, the best way we can.

Oh yea, I changed my neuro appointment to Thursday, Dec 17 from Jan 20. Thank goodness he had a cancellation.

PFDAN

Barry a/k/a Silver Dolphins

Title: Re: New to this site.
Post by Opus on Dec 17^th, 2002, 6:27pm

Also try sleeping propped up on pillows or in a recliner. It helps some of us from waking up with the beast. I also found that limiting sleep to 6 hours prevented anouther CH at wake up but thats me.
Opus :P

Title: Re: New to this site.
Post by cootie on Dec 17^th, 2002, 6:42pm

silver_dophins....Bradley gets the droopey eye deal you mentiond and side of his face turns red w/stuffy runny sinus on that side also....it's scarey....it's called Horner's syndrone if I have it correct....believe it is the nerve being effected at time of attack...there's info on here about it.....it's unreal to watch happen to someone rite before your eyes like I do with Brad.....like a scarey movie with good computer effects.......Pam.......

Title: Re: New to this site.
Post by echo on Dec 18^th, 2002, 8:53am

Welcome aboard Barry. Sorry you needed to search us out, glad you found us.