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   Author  Topic: Hi there - Long time reader, first time poster &nb  (Read 1142 times)
Cosworth
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Hi there - Long time reader, first time poster &nb
« on: Dec 12th, 2005, 10:40am »
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This is my first post to this site, though i've admittedly been coming here for several years during ch episodes looking for anything new to try... I've been episodic sufferer for about 16 years give or take.. I was about 23 (am 35 now - male) before i really started noticing a pattern for my ch's.. and since then, my episodes have always been between Late august - Late december, but more commonly in the oct - nov.. timeframe.. though for the last two years it's been in december... go figure.  My episodes are typically anywhere from 5 - 9 weeks with the middle few weeks having several ch's per day.... classic bell curve if you will.. they start in the first week and end in the last week less intense than those middle ones..  anyway, i figured it was time to post here because i've really gotten a lot from this site, and the support it offers.  I figured the least i can do is share a little of my own trials.   I am not a big fan of medication, but i have grudgingly come to accept that prednisone does seem to help me... i've tried maxalt for abortive, and also midrin,  but didn't seem to help a whole lot. My dr.'s been very hesitant to try imitrex, or other type of meds i've read about on this site.   The key abortive therapy for me that I discovered completely by accident and essentially out of rage is getting the ol' heart pumping.. doesn't matter how.. running, push-ups, whatever... i have to get my heart rate up and keep it up for at least 15 minutes or so (120 - 140 bpm?? just guessing), the earlier in the attack the better. If I do this, it rarely fails to abort a ch and typically within that 10 or 15 minutes....  problem is on the days that i have 3 or 4 ch's, i usually don't have the energy to try this "therapy" more than twice (i'm not much of an exercise guy) and it's also very hard when you work full-time like I do and can't exactly stop whenever you want to and go jog around the building.... so, i use ice, lots of head rubbing, and i've tried some "alternative" treatments with some success.... but nothing as effective as exercise.   I'd like to get some Oxygen, because my assumption is that the exercise is having a similar effect - more oxygen to the brain etc., but i'm no Dr., and mine doesn't seem to want to prescribe me any..  At any rate, my heart goes out to anyone who suffers with this condition, especially chronically. I've learned - much like another poster i read - to deal with this as part of my makeup, but i also have typically 9 or 10 months - up to 12 in between episodes.. and believe me I thank God for that. I'm always looking for better ways to fight these things, but if there's anyone out there who hasn't tried the exercise  or oxygen thing, i'd say give it a shot.. and like i mentioned, it's a good outlet for the anger that a real painful ch can bring with it..
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marlinsfan
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Re: Hi there - Long time reader, first time poster
« Reply #1 on: Dec 12th, 2005, 1:55pm »
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on Dec 12th, 2005, 10:40am, Cosworth wrote:
I'd like to get some Oxygen, because my assumption is that the exercise is having a similar effect - more oxygen to the brain etc., but i'm no Dr., and mine doesn't seem to want to prescribe me any..

 
Cosworth, get a new neuro. O2 is the preferred abortive. If your neuro won't give it to you, get a new neuro.
 
Take this with you when you visit the doc again. and don't leave without your prescription.
 
http://www.brightok.net/~mnjday/chtherapy.pdf
 
PF wishes.
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Re: Hi there - Long time reader, first time poster
« Reply #2 on: Dec 13th, 2005, 1:21pm »
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marlinsfan,  
 
Thanks a lot for the link and the suggestion. I know that I need to push on my doc to help me out...  He's not a neuro, just a family practitioner guy, and I wonder sometimes how much he actually knows about clusters.. i will give him the article if he tries to put me off.   thanks again
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E-Double
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Re: Hi there - Long time reader, first time poster
« Reply #3 on: Dec 13th, 2005, 1:41pm »
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Hiya  
 
This is a great resource to know like the back of your hand...print it out and give it to the doc  
 
http://www.brightok.net/~mnjday/chtherapy.pdf  
 
It will present the appropriate treatments that you should seek and your doctor should know!!!  
 
 
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!  
 
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
 
I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"  
 
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
 
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful  
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.  
 
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.  
 
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...  
 
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.  
I stayed with melatonin and have had decent sleep overall.  
 
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....  
 
Like I said we are all different.  
 
Best wishes, good luck & stay as positive as you can!!!!  
 
Eric  
 
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Re: Hi there - Long time reader, first time poster
« Reply #4 on: Dec 13th, 2005, 2:27pm »
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Hey Cosworth,
 
Thanks for joining in on the fun here at CH-opia.
 
As for your GP not getting you what you want. Your options are pretty clear. You either have to better job of educating him by using the links that the others have posted here, or find a doctor that will get you what you need. And I say "NEED".
 
I was very much like you only a couple of years ago. Gutting out the heads when I got'm. Not really wanting to use meds, blah blah blah. Knew from reading here that I needed an O2 rig but dragged my feet or wouldn't push my doc to get it. And, as a result I got heads and suffered through them.
 
Finally I faced myself. I was my worst enemy. Inspite of saying "I'd do anything not to have to deal with these things", I was uttering a lie to myself. Because I wasn't even doing the minimum. So I kicked myself in the ass and got O2, got Imitrex, Got Kudzu and got to work on my headaches when they hit. And my life is changed. Because of not only reading and knowing about it but getting off my butt and doing something about it.
 
My doc fought me hard about the O2 and the injectable imitrex, but I knew it was my fight to fight and I wasn't going to leave until he relented and gave me the prescriptions. You have to take control of your future on this.
 
I doubt you really needed a pep talk, but this is what I'm trying to give ya. Go MAKE IT HAPPEN, or you have no one to blame but yourself.
 
Good luck and go get'm.
 
Scott
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Re: Hi there - Long time reader, first time poster
« Reply #5 on: Dec 13th, 2005, 3:35pm »
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Well said Scott,
 
Wished I had read it years ago when I "thought" I could tough it out without help. Took desperation to wake me up. What a knothead, didn't have to be that way.
 
Regards
 
Jon
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Re: Hi there - Long time reader, first time poster
« Reply #6 on: Dec 13th, 2005, 8:18pm »
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Hi Cosworth,
 
Welcome.  I can only urge you to follow the advice already given.  Take those articles to your doc and either demand what you need, or ask for a referral to a reliable and knowledgeable neuro.
 
The only alternative is suffering more than you already are - none of us need that.  Keep posting.
 
Hugs,
 
Kris
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Re: Hi there - Long time reader, first time poster
« Reply #7 on: Dec 13th, 2005, 11:37pm »
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Hi Cos  
 
  My CHs started (I believe) as the result of a head trauma 1/01.  For the next year, I had CTs, MRI and other tests I don't remember, non-working meds, mis-diagnosis.  First prescribed Vioxx, then Atenelol (sp?), in increasing doses.  By the time my wife found this site 2/02, I was having 6-8 per day, Kip 5-9 and sometimes 3-5 per night . . . .  afraid to sleep, afraid of the next one . . . "how soon?, how bad?, how long?  I don't have those fears anymore thanks to this place.
 
  Two weeks of reading here and then I was hit with what still ranks as the worst CH I have had . . .  in the woods, by myself , for about 3hrs.  The next day I went to the doctor armed with info copied off the site and DEMANDED a script for 02 and Verapamil.  Also requested the Imitrex and he (correctly) ordered stress tests (which showed some blockage) and subsequent heart cath (wasn't enough blockage for stint).  But, it did mean that Imitrex would/could be very dangerous for me.   SO . . . 02 is my only abortive and I can kill the beast in minutes if caught early on in the attack . . . . works for about 70% of us . . . . if it works for you, you'll be kicking yourself for all the unnecessary pain you've endured
 
  I can deal with the beast as long as I don't have to "dance" with the bastard.
 
  GET SOME 02,
 
     Be Safe,
 
     Richard
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Re: Hi there - Long time reader, first time poster
« Reply #8 on: Dec 20th, 2005, 10:23am »
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thanks to all for your replies, support and advice (eric, scott, jon, kris and richard).  I should have been spending a lot more time here a long time ago.  Since my first post and not coincidentally i've been ramping into a cycle.. mine are very unpredictable though unlike so many others i've read about i don't tend to get awakened often.. but more frequently in middle of a cycle when i may have anywhere from 2 or 3 to 6-7 ch's in a day.. it really is a mysterious and cruel beast.  I pray for everyone that knows it.  I am going to get on my doc regarding the O2.   I seem to have less will to "tough it out" each time the beast returns.. which for me seems to be a yearly thing..  at any rate, i've been reading a lot about kudzu and am interested to try it... couple of questions:  1) Do people stay on it even after a cycle has passed?  2)  I've seen contraindications  mentioned (possibly) with people on triptans. I've recently begun a course of prednisone.. any known issues with taking kudzu while on predisone?  I may not be posting this question in the right place...  forgive me while i get more familiar with how these message boards work..     PF wishes to you all..
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Re: Hi there - Long time reader, first time poster
« Reply #9 on: Dec 20th, 2005, 10:42am »
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Hi Cos... regarding kudzu, I'll tell you what I know so far.  
1. I know of one episodic who continues to take kudzu even after her cycle is over. I believe that all the rest of the episodics have stopped once they're sure that the cycle is over.
2. The problem with kudzu and triptans is that kudzu (if taken within 2 hours of triptans) can render the triptans ineffective. I only know of one person who used kudzu and prednisone at the same time, and his results were not as good as others who didn't. It didn't seem to cause any problems for him, he just didn't get as much relief. (Of course...not everybody does.)
The thing about all the treatments is that nothing works for everyone, but usually something works for each of us. It's a crap shoot. You keep plugging away until you find what works for you.  
I hope you find something soon.  
Good luck and pain free wishes, nani
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