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Topic: Help me please! *tears* (Read 1269 times) |
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Lissa
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Help me please! *tears*
« on: Aug 12th, 2003, 8:56am » |
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I can't take this shit anymore. It's been three damn months and I'm tired of it. I don't know how much more I can take. I consider myself a very strong person. I've been to hell and back being hospitalized for depression and anorexia. I know pain. I've dealt with it, but I can't handle this.  It hurts so fucking bad I want to die. This morning at 5 a.m. I got one of the worst ones I've had in a long time. I went from laying in bed snuggling up next to my boyfriend to shaking and crying like a baby on the livingroom floor. There was nothing I could do but wait and pray and wait and pray. Sure it went away, but I know it'll come back. I'm currently taking medication for anxiety and depression and these headaches and the apprehension in between headaches is not helping matters at all. Is there anything else I can do? Please!
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| « Last Edit: Aug 12th, 2003, 8:58am by Lissa » |
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Jackie
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Re: Help me please! *tears*
« Reply #1 on: Aug 12th, 2003, 9:05am » |
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Hang on, Sweetie......you got mail.
Jacks 
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miCHel
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Re: Help me please! *tears*
« Reply #2 on: Aug 12th, 2003, 9:06am » |
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Hi Jewel,
Sorry you are having it so rough right now. After three months of pain, it does get discouraging. But it will go away. It always does. You are going to beat the shit out of this beast one more time! You have done it numerous times before and you'll do it again.
What meds are you taking? Any good abortives such as O2 or Trex shots for the really bad ones?
In the meantime, hang in there! Countless vibes are on the way!!!
miCHel
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Lissa
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Re: Help me please! *tears*
« Reply #3 on: Aug 12th, 2003, 9:09am » |
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I'm taking Verapamil and Imitrex. Never tried oxygen. I don't think my insurance will cover that.
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Miklos
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Re: Help me please! *tears*
« Reply #4 on: Aug 12th, 2003, 9:11am » |
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Perhaps you find someone close to you in Minnesota who also has cluster headaches. Perhaps they'll be close enough for you or them to visit. Perhaps only to talk.
Send me a message if you wish, and I will send you my toll free number here at work. Management is reasonably sympathetic here since they have their own resident cluster freak.
Miklos
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BruceD
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Re: Help me please! *tears*
« Reply #5 on: Aug 12th, 2003, 9:13am » |
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Jewel,
Many people here, myself included, know exactly what you are going through. The unrelenting pain ... the lack of a good night's sleep ... depression ... never knowing when the next attack will occur ... afraid to live you life or go outside. All of these things weigh heavily on a person and make one think that they cannot go on any longer. What I will say is that you can go on ... and you must.
When I found this place earlier this year I was feeling like that too. What I found was a wealth of information along with people willing to help. My first post had people giving support, empathy, and recommendations. It was in that post that I was informed about oxygen as a treatment. No, that's not quite right .. Mr Happy urged/demanded that I get off my duff and head out to the doctor to demand a script for oxygen. He said once the paper was in hand to drive directly to the O2 supply house and pick it up directly from them. Don't worry about insurance ... just get the O2 and give it a chance ... you can take care of the paperwork later!
For his advice I am eternally grateful. Thankfully, even though it was a Friday for my doc apt., the O2 supply guys drove the stuff out to my house on their way home for the night. That night was the first time I aborted a headache and I will never forget the feeling of joy & empowerment that it gave me.
Please, do just what I was told. Get to your doctor ... print out the O2 medical info here ... and demand the script. Oxygen is a Godsend for me and I cannot imagine going through another cycle without my "ammunition".
Take care
BruceD
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Lissa
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Re: Help me please! *tears*
« Reply #6 on: Aug 12th, 2003, 9:15am » |
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MiCHel: I was looking into that oxygen thing and it says that it takes 15-20 minutes to abort the headache. I don't think it would do much more than the Imitrex does for me. When I take Imitrex, it usually starts working anywhere from 10-15 minutes.
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ozzman
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Re: Help me please! *tears*
« Reply #7 on: Aug 12th, 2003, 9:16am » |
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By checking your previous post I have a couple suggestions and as many questions.
You said you are taking about 90mg of Verapamil (half a pill once a day) I would suggest two things, it sounds like you are taking one of those extended release ones (not sure). Ask your doctor to give you "regular" ones, i.e. immidiate release, and to increase your dosage, some people take up to 960mg a day but it is something that should be increased slowly and under medical supervision.
You did not mention what preventatives you take, O2 of course, Imitrex Nasal Spary or better yet Injections. I would also suggest Amerge befor bed time to avoid the middle of the night wake up. Talk to your doctor. There is much to explore as far as dealing with CHs.
As far as the length of the cycle I can relate. Mine were always 2 months. I just had a 4 month one and I'm fighting one (with Verap) as we speak (It's only been a 3-4 month remission). Hang in there. This may be part of your life, but it is NOT your life.
PFDAN
Ozzy
Oops took too long to type, I'm slow like that. I can see what you use as abortives
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| « Last Edit: Aug 12th, 2003, 9:18am by ozzman » |
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JDH
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Re: Help me please! *tears*
« Reply #8 on: Aug 12th, 2003, 9:16am » |
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Jewel,
Find out if you can get o2. It's not very expensive compared to the Imitrex and it has been a life saver fo rmany of us.
check your messages 
Jim
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Big Dan
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Re: Help me please! *tears*
« Reply #9 on: Aug 12th, 2003, 9:18am » |
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on Aug 12th, 2003, 9:15am, Jewel wrote:| MiCHel: I was looking into that oxygen thing and it says that it takes 15-20 minutes to abort the headache. I don't think it would do much more than the Imitrex does for me. When I take Imitrex, it usually starts working anywhere from 10-15 minutes. |
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True... but if you "gang bang" the HA with Trex and O2... it seems to work faster....
... give it a shot... I mean, what do you have to lose besides the pain?...
-Big Vibes
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Lissa
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Re: Help me please! *tears*
« Reply #10 on: Aug 12th, 2003, 9:19am » |
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on Aug 12th, 2003, 9:11am, Miklos wrote:Perhaps you find someone close to you in Minnesota who also has cluster headaches. Perhaps they'll be close enough for you or them to visit. Perhaps only to talk.
Send me a message if you wish, and I will send you my toll free number here at work. Management is reasonably sympathetic here since they have their own resident cluster freak.
Miklos |
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I don't know anyone in my area that gets these headaches. I have plenty of friends that get migraines, but that's not the same. I guess that's why I've been coming here through all my episodes. People here can relate and I need that.
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Lissa
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Re: Help me please! *tears*
« Reply #11 on: Aug 12th, 2003, 9:20am » |
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on Aug 12th, 2003, 9:16am, ozzman wrote:By checking your previous post I have a couple suggestions and as many questions.
You said you are taking about 90mg of Verapamil (half a pill once a day) I would suggest two things, it sounds like you are taking one of those extended release ones (not sure). Ask your doctor to give you "regular" ones, i.e. immidiate release, and to increase your dosage, some people take up to 960mg a day but it is something that should be increased slowly and under medical supervision.
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The doctor did double my dosage of Verapamil, so I believe I'm at 180 now.
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Lissa
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Re: Help me please! *tears*
« Reply #12 on: Aug 12th, 2003, 9:22am » |
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on Aug 12th, 2003, 9:18am, Big_Dan wrote:
True... but if you "gang bang" the HA with Trex and O2... it seems to work faster....
... give it a shot... I mean, what do you have to lose besides the pain?...
-Big Vibes |
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Are there any hazards to O2?
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ozzman
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Re: Help me please! *tears*
« Reply #13 on: Aug 12th, 2003, 9:23am » |
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Was the Verap, extended or immediate release? 180 it's still kind of low.
Ozzy
Try the Amerge
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Big Dan
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Re: Help me please! *tears*
« Reply #14 on: Aug 12th, 2003, 9:25am » |
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on Aug 12th, 2003, 9:22am, Jewel wrote:
Are there any hazards to O2?
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Not a single fuckin' one... it just dries out your lungs/sinuses a little bit, but they make a "bong" (thanks Jonny ;D ) to fix that part.
-Big Dan
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Lissa
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Re: Help me please! *tears*
« Reply #15 on: Aug 12th, 2003, 9:25am » |
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I don't know what you mean by "extended or immediate release".
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ozzman
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Re: Help me please! *tears*
« Reply #16 on: Aug 12th, 2003, 9:29am » |
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Verapamil (generic name) comes in many forms, here is some info that Ueli posted a while back
Quote:verapamil comes in different variations: regular, SR (sustained release), PM and HS (controlled onset).
Regular verapamil takes 1-2 hours to reach maximum plasma concentration. The renal elimination half-life of verapamil is 4.5 to 12.0 hours. It therefore seems to make sense to split the daily dosis into several parts and use a slow release version, in order to get an almost constant concentration throughout the day. I don't know anything about verapamil usage for heart disease, could be this is an important point there.
However, experience for clusterheads shows that verapamil takes a much longer time to show any effect, a week to 10 days. Therefore, the short time variations throughout the day are of little consequence. (A year ago I dropped my daily dosis from 560 mg to 480 mg. After about a week the attacks got worse. So after a few day I went back up to the previous dose and it took another week until the attacks were reduced again.)
In view of this, there should be no reason to prefer any variant over the other. But Dr. Peter Goadsby, the world's most knowledgeable expert on CH, recommends the regular verapamil over the SR version, on pure empirical reasons. He doesn't know why, but suspects the different mix of the (about a dozen) metabolites for the different variants. There are quite a few testimonials on this MB on improved results from changing from SR to regular.
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Ozzy
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Lissa
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Re: Help me please! *tears*
« Reply #17 on: Aug 12th, 2003, 9:30am » |
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Big Dan: I'm a smoker, would that be considered a hazard?
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BruceD
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Re: Help me please! *tears*
« Reply #18 on: Aug 12th, 2003, 9:32am » |
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Hey Jewel,
From your profile I see you're from the Winona area. I'm in the Madison, WI area (as is Karla) and although it's probably 3-3 1/2 hours away, that's not all that far. Perhaps sometime we could arrange a WI-MN mini-convention for CHers. Let me tell you that it does make a difference to actually meet another sufferer!
If you have trouble getting the O2, I know there are those here with experience using welders oxygen. I have an extra non-rebreather mask & humidifier that I could send your way if need be. Drop me a PM if you find that you have need for them.
Take care
BruceD
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Lissa
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Re: Help me please! *tears*
« Reply #19 on: Aug 12th, 2003, 9:32am » |
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Ozzman: Thanks for the info. I'll have to check into that.
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jon69
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Re: Help me please! *tears*
« Reply #20 on: Aug 12th, 2003, 9:32am » |
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Angel, I read your post yesterday and you do seem so desperate. This thing we have is real shit. Not only the pain but as you say, the apprehension of another attack. It really can hold you prisoner. I really do feel for you, I've felt the same way more than once during my own current cycle.
I don't know your history but you should speak to your doctor. Maybe up your verapamil, that will help. Also take the advice and get OXYGEN, it really is a great crutch to have. Also are you taking Imitrex pills or injections? Get the injections, they will kill the pain no matter what stage you are at, within ten minutes.
NOBODY should go through the pain we CH's suffer. Get help from your doc. Show him all you can about this site. If he doesn't understand the condition, MAKE him understand.
DON'T LET THIS BASTARD GET YOU DOWN, IT WILL PASS!
I truly wish you all the relief you deserve. Take Care.
John
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Peppermint
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Re: Help me please! *tears*
« Reply #21 on: Aug 12th, 2003, 9:33am » |
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Jewel, there are different types of "release"for verapimil. From what I've seen here, people start to get relief at about 360mg and up.... I think Ozz is right, 180 is still too low.
Check your email.. there are other things you can do until you get your meds AND 02 straightened out.
Big Dan .... Dude, its called a bubbler..
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Lissa
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Re: Help me please! *tears*
« Reply #22 on: Aug 12th, 2003, 9:35am » |
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on Aug 12th, 2003, 9:32am, BruceD wrote:
If you have trouble getting the O2, I know there are those here with experience using welders oxygen. I have an extra non-rebreather mask & humidifier that I could send your way if need be. Drop me a PM if you find that you have need for them. |
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Thanks for the offer. You're too nice. 
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Episodic cluster survivor since 1995 at age 16.
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Lissa
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Re: Help me please! *tears*
« Reply #23 on: Aug 12th, 2003, 9:37am » |
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on Aug 12th, 2003, 9:32am, jon69 wrote:| I don't know your history but you should speak to your doctor. Maybe up your verapamil, that will help. Also take the advice and get OXYGEN, it really is a great crutch to have. Also are you taking Imitrex pills or injections? Get the injections, they will kill the pain no matter what stage you are at, within ten minutes. |
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I'll definitely check into the oxygen thing, but injections are not an option. I'm deathly afraid of needles. The pills work great for me.
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ozzman
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Re: Help me please! *tears*
« Reply #24 on: Aug 12th, 2003, 9:40am » |
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One last thing. There is *wealth* of information in this site. For the most complete info about Oxygen treatment look at the second thread from the top in the General area of the borad (this area). Read up, follow the links. It will answer questions that you couldn't imagine (e.g. smoking and oxygen)
Ozzy
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