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        New Message Board Archives >> 2003 Posts >> Help me please!  *tears*
        
(Message started by: Jewel on Aug 12th, 2003, 8:56am)
Title: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 8:56am
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!  
Title: Re: Help me please!  *tears*
Post by Jackie on Aug 12th, 2003, 9:05am
Hang on, Sweetie......you got mail.

Jacks 8)
Title: Re: Help me please!  *tears*
Post by miCHel on Aug 12th, 2003, 9:06am
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
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 9:09am
I'm taking Verapamil and Imitrex.  Never tried oxygen.  I don't think my insurance will cover that.
Title: Re: Help me please!  *tears*
Post by Miklos on Aug 12th, 2003, 9:11am
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
Title: Re: Help me please!  *tears*
Post by BruceD on Aug 12th, 2003, 9:13am
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
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 9:15am
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.  
Title: Re: Help me please!  *tears*
Post by ozzman on Aug 12th, 2003, 9:16am
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
Title: Re: Help me please!  *tears*
Post by JDH on Aug 12th, 2003, 9:16am
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
Title: Re: Help me please!  *tears*
Post by Big_Dan on Aug 12th, 2003, 9:18am

on 08/12/03 at 09:15:26, 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.  



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
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 9:19am

on 08/12/03 at 09:11:54, 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


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.
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 9:20am

on 08/12/03 at 09:16:28, 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.


The doctor did double my dosage of Verapamil, so I believe I'm at 180 now.  
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 9:22am

on 08/12/03 at 09:18:46, 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


Are there any hazards to O2?
Title: Re: Help me please!  *tears*
Post by ozzman on Aug 12th, 2003, 9:23am
Was the Verap, extended or immediate release? 180 it's still kind of low.

Ozzy

Try the Amerge
Title: Re: Help me please!  *tears*
Post by Big_Dan on Aug 12th, 2003, 9:25am

on 08/12/03 at 09:22:48, Jewel wrote:
Are there any hazards to O2?



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
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 9:25am
I don't know what you mean by "extended or immediate release".  
Title: Re: Help me please!  *tears*
Post by ozzman on Aug 12th, 2003, 9:29am
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.



Ozzy
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 9:30am
Big Dan:  I'm a smoker, would that be considered a hazard?
Title: Re: Help me please!  *tears*
Post by BruceD on Aug 12th, 2003, 9:32am
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
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 9:32am
Ozzman:  Thanks for the info.  I'll have to check into that.  
Title: Re: Help me please!  *tears*
Post by jon69 on Aug 12th, 2003, 9:32am
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
Title: Re: Help me please!  *tears*
Post by Peppermint on Aug 12th, 2003, 9:33am
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.. ;)
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 9:35am

on 08/12/03 at 09:32:25, 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.


Thanks for the offer. You're too nice.   :)
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 9:37am

on 08/12/03 at 09:32:48, 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.  


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.  
Title: Re: Help me please!  *tears*
Post by ozzman on Aug 12th, 2003, 9:40am
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
Title: Re: Help me please!  *tears*
Post by JDH on Aug 12th, 2003, 9:43am
o2 link

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Jim
Title: Re: Help me please!  *tears*
Post by Big_Dan on Aug 12th, 2003, 9:44am

on 08/12/03 at 09:33:23, Peppermint wrote:
Big Dan .... Dude, its called a bubbler.. ;)


;D ;D ;D

Yeah, I know... but Jonny called it a "bong like thing" when I had some O2 questions for him...


-Big Dan
Title: Re: Help me please!  *tears*
Post by BruceD on Aug 12th, 2003, 9:48am

on 08/12/03 at 09:33:23, Peppermint wrote:


Big Dan .... Dude, its called a bubbler.. ;)


What? And all this time I thought a bubbler was a drinking fountain. ;D (Wisconsin-speak inside joke)

Later
BruceD
Title: Re: Help me please!  *tears*
Post by forgetfulnot on Aug 12th, 2003, 9:51am

Quote:
I'm currently taking medication for anxiety and depression


I saw a dramatic increase in duration and pain levels while taking SSRI's for depression, stopped taking them and the clusters subsided. In my case there was a clear correlatiion as I started and stopped many times trying different brands with the same result each time.

Your mileage may vary.

Lee
Title: Re: Help me please!  *tears*
Post by jon69 on Aug 12th, 2003, 10:10am
Just been reading the comments about Verap dose.  I was taking 80 mg 3 times a day, which wasn't helping.  Last week my Doc upped the dose to 120 mg 3 times a day, and I've definately noticed a decrease in the number of H/A I get per day.  So I would say you definately need to talk to doc about upping the dose.

Also the injections aren't as bad as you think.  They shoot in real quick and you get just a slight sting for a few seconds.  After you've done it once or twice it will not bother you at all, after all what's a slight sting compared to the agony of CH?
Title: Re: Help me please!  *tears*
Post by FrankF on Aug 12th, 2003, 10:19am

on 08/12/03 at 09:37:24, Jewel wrote:
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.  

I was a little apprehensive the first time I tried injections but then I thought sticking myself with a needle could be nothing compared to CH pain. It usually works for me in about 6-7 minutes.
Title: Re: Help me please!  *tears*
Post by Peppermint on Aug 12th, 2003, 10:19am

on 08/12/03 at 09:44:33, Big_Dan wrote:
;D ;D ;D

Yeah, I know... but Jonny called it a "bong like thing" when I had some O2 questions for him...

-Big Dan


;D... Well yahuh... I figured that.  I really wasn't calling ya dumb or anything.. uh...sorry Big Dude.  
:)
Title: Re: Help me please!  *tears*
Post by miCHel on Aug 12th, 2003, 10:22am
Jewel,

Although I was a little afraid to inject myself at the beginning, I started to love it when I found out that it aborts ALL my attacks in approximately 7 minutes. Max.  It's a miracle for me.

I had to try it because Imitrex pills do not work at all for me.  If your insurance will cover the shots, please try them.  It's really not that bad with the injector.  As a matter of fact, it's the one of the best thing that ever happened to me.

Please try it!  And good luck with everything.

miCHel
Title: Re: Help me please!  *tears*
Post by jon69 on Aug 12th, 2003, 10:24am
Believe me, the trex injections are a godsend.  I swear I can almost feel the drug running through my body to the pain and when it hits the spot,  the relief is heaven!!
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 10:24am
Thank you so much you guys for all your emails and for all your compassion.  This is really a great place.  I feel so much better now.   ;D
Title: Re: Help me please!  *tears*
Post by fubar on Aug 12th, 2003, 10:28am
Jewel,

Couple things..

1) Hang in there, it will end.  Keep telling yourself it will end.  It will.

2) Deathly afraid of needles... me too.  I even passed out right in front of the doctor when I got my tetanus shot.  I was lucky I didn't crack my head on the way down.  The thing is, with the Imitrex shots, you don't even *see* the needle.  It loads up in this stick-like thing and all you do is press a button and the injection is automatic.  It's not comfortable, but the relief is 10x faster than with the pill.  I can't imagine waiting for a pill to take effect.

3) On oxygen... try it.  Don't be stupid.  If you are suffering, you owe it to yourself to find out what pure relief is like.  O2 has rescued me many many times.  No side effects, pure relief.  I would not go by the 10-15 minute claims, as I often see relief in about 5 minutes.  I have become a pro at aborting an attack with O2 and a shot of Imitrex (if needed).  I prefer to avoid the shots (expensive and I just hate shots)

4) On verapamil... get your doctor to prescribe normal release type, the opposite of ER (extended release).  It makes a difference.

5) Anxiety and depression meds... nothing but bad stories to go with those... especially the anxiety meds.  The make the headaches worse in my experience.  Get off them.  Especially anything like xanax, valium.

That's all the help I can offer for now.  I hope you feel better soon.

-Fu
Title: Re: Help me please!  *tears*
Post by Jackie on Aug 12th, 2003, 10:30am
Good Girl, Jewel.... :)

Now....call your doctor and see if he'll help you with some of the suggestions...please.. :D

Keep us posted.....

Jacks 8)
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 12th, 2003, 10:38am
I will.    :)
Title: Re: Help me please!  *tears*
Post by echo on Aug 12th, 2003, 2:07pm
Hope tonight goes better for you.  Try to avoid REM sleep if you can.  Some over the counter drugs can help. Seems like (for me anyway) the beast resides in REM.  

Take care, stay strong, this will pass.
Title: Re: Help me please!  *tears*
Post by Mark C on Aug 12th, 2003, 2:13pm
Imitrex Injection (http://us.gsk.com/products/assets/us_imitrex_injection.pdf) = PF in less than 10 minutes, more like five for me. The only thing to really work so far in almost 30 years of this shit. Hang in the girl, big ass PF vibes to ya!
Title: Re: Help me please!  *tears*
Post by River_Rat on Aug 12th, 2003, 2:34pm
Injections work for me ALWAYS in 4 min., I have my wife push the button as I look away, It's not as bad as you think.

I also watch the clock and say to myself, I can do anything for an hour. For me anyway 1 hour is a normal ch.

You Have Mail!!!!1

LEE
Title: Re: Help me please!  *tears*
Post by HypnoticFreddy on Aug 12th, 2003, 2:36pm
Just don't smoke while you are using the oxygen, or near any of the oxygen tanks. Then you'll have another kind of headache.

                             -HypnoticFreddy
Title: Re: Help me please!  *tears*
Post by jon69 on Aug 12th, 2003, 2:43pm
Yeah smoking while puffing the O do not mix.  Also wait a good five minutes before lighting a cig after using oxygen, as it can linger on your clothes, bedsheets etc.

I didn't know this until last year, and I would quite often have a cig on the go while aternately puffing on the O! Bad idea eh?

John
Title: Re: Help me please!  *tears*
Post by zanychef on Aug 13th, 2003, 5:52am
hi jewel
hang in there hun i've been chronic for more years than i care to remember and i'm still alive and kicking (specially when i get a 10 lol)good vibes coming to you from the uk ;D :-*
Title: Re: Help me please!  *tears*
Post by godsjoy on Aug 13th, 2003, 7:27am
Hey Jewell,
I gotta get in on this too.....Oxygen....oxygen.....oxygen....and I take 240mg of Verapamil.....I found a place that only supplies oxygen to all kinds of sufferers and got a used tank  (may as well buy one)....for pretty cheap....and they are willing to sell the extra tank cheap as well....so it is well....Our insurance won't cover it until we meet a deductable for that type of RX....but to heck with it...It is a smart investment.....

When I FINALLY got it I used it for a couple of shadows and it didn't seem to do anything....BUT......ahen I started to get a major 8 on the kip scale....It just nipped it in the bud in less than 5 minutes....I was floored it worked so fast....I'm used to having to wait out my meds....Maxalt for 15-20 minutes.....so oxygen dittos here......

You're gonna make it girl......You will.....I'm praying for you today.....

Blessings,
Karen
Title: Re: Help me please!  *tears*
Post by cootie on Aug 13th, 2003, 7:54am
Hey Jewel.....hope ya've found a better mix of stuff that works better faster for ya by now.....looks like ya got alot of good info and advice goin on. Good luck to ya........Pam hopein ya find the combo
Title: Re: Help me please!  *tears*
Post by Melissa on Aug 13th, 2003, 7:56am

on 08/12/03 at 09:37:24, Jewel wrote:
injections are not an option.  I'm deathly afraid of needles.  The pills work great for me.  


Have you thought about trying the nasal sprays?  For me they work pretty quick, within 10min after the onset.  Remember, like Elaine said in a previous post, medicate at that first twinge!

Good Luck!
:)mel
Title: Re: Help me please!  *tears*
Post by Georgia on Aug 13th, 2003, 7:58am
Hi Jewel,

Your post brought tears to my eyes. I have been where you are right now, we all have, and we know the pain all too well. You need to know that you aren't alone in this pain or in this struggle. You have just come home. You have a family now who will hold you when you weep, stand behind you as you fight, and carry you when you are too weak to go on.

A lot of great people have given you a lot of great advice. In many cases, we know more than the dr's do about CH and about the meds to treat them. We do not, however, know what damage the anorexia has done to your system and the effect that medications and treatments can have on that. So please, please just make sure you check with your doctor before you change/stop/start any treatment or medication.

Please keep us updated and if you have any other questions or if you just need to vent....that's what we are here for.

Wishing you pain free nights and days.

Peace and love,
Georgia
Title: Re: Help me please!  *tears*
Post by jon69 on Aug 13th, 2003, 10:11am
Hey, Zanychef, I'm in Dartford too!
Title: Re: Help me please!  *tears*
Post by stuey on Aug 13th, 2003, 2:20pm
Jewel I am sorry to hear you are going through it so hard it hurts to read it.  You said you are taking 180 verapamil.  I am taking 960 mg of it and it finally stopped the attacks.  I take verapamil SR for my blood pressure as well.  I would consider asking the doctor (is this a neuro?) to increase steadily the dosage.  I was taking 240 for my blood pressure and as I say I'm up to 960.  I have had no side effects other than the attacks have seized for about 3 weeks now.  I take two 240 mg in the morning and two 240 mg in the evening.  I was afraid of needles also but found that since I'm giving myself the injection in my leg I got over the fear.  The pills just took too long for me.  I am praying for you and hope the pain ceases soon.  definitely ask about increasing the verapamil because it could stop them altogether.  Stuey
Title: Re: Help me please!  *tears*
Post by Opus on Aug 13th, 2003, 5:02pm
Great Job Family,

Jewel
I can't  add anything more except, great name and


http://www.imgmag.org/images/sunny22/Gifs/Welcome.gif

Opus/Paul
Title: Re: Help me please!  *tears*
Post by cathy on Aug 13th, 2003, 5:19pm
Hi Jewel...Welcome sorry your having such a tough time, hope you get O2 !!

I can't say anymore than beens said either, except....Big PF Vibes to you, hang in there and get to know the family it's one of the best!!!

Cathy  :)
Title: Re: Help me please!  *tears*
Post by UnsolvedEquation on Aug 13th, 2003, 7:21pm
   Sorry to hear the beast has you again. Three months is a long time. But, look at it this way ... it could be worse ...
   I'm in my Third YEAR
   Hang in there and I hope you get a break soon  :)
    FROM A CHRONIC CLUSTERHEAD
Title: Re: Help me please!  *tears*
Post by Charlie on Aug 13th, 2003, 8:04pm
You are on the right site and we'll never leave you alone  :)

This link is to a circulatory technique that worked very well for me and others. It's something to try when drugs are not available. Here tis:

http://www.netsync.net/users/charlies/

Good luck kid.

Charlie
Title: Re: Help me please!  *tears*
Post by scooby3 on Aug 13th, 2003, 8:38pm
Hey Jewel, this is my first time on this site. I just signed up today. As you may guess I just started a round of cluster headaches. I get horrific clusters and intollerable tension headaches at the same time. I had to do a lot of talking, but I finally got oxygen through my insurance company (I have Cigna). If it is declared a medical necessity, I would say most insurance companies would have to give it to you. It takes me months to get an appointement with my neurologist but she just gave me a phone consultation today. I left a message and I think she detected the urgency in my voice and she called me back right away. She just prescribed metheylprednisolone (a steriod) and I am now taking it for the first time. The oxygen works great but it doesn't prevent the attacks which start randomly. I can't be at work (I'm a teacher) and get up and leave the room to puff on some oxygen. I guess what I am saying is, no matter what it takes, harrass your insurance company and no matter what meds your doctor gives you, if they don't work, call them back until they find something that does. Believe me, it will be worth the embarrassment of being a pain in the ass. Oxygen does abort my clusters completely, but unfornately I have terrible tension headaches which accompany them (usually). When I only have a cluster (the stabbing behind the eye), oxygen is the only thing that works without making me wasted (like the stadol nasal spray makes me). Smoking within the same house with the oxygen is not a problem, but I do make sure that no one smokes in the room that I keep my tanks and take my doses (which take about 20 minutes) and I make sure I always turn off the tanks completely when not in use. Lots of luck, Liz
Title: Re: Help me please!  *tears*
Post by Donna on Aug 13th, 2003, 9:36pm
Nice post and welcome scooby3.......glad you found us too.  We are growing in numbers everyday......over 1000 official members of OUCH (see http://www.clusterheadaches.org)

Oxygen is absorbed by certain materials which does cause them to be more flamable, so caution is very necessary.
Title: Re: Donna
Post by scooby3 on Aug 14th, 2003, 1:57am
Thanks for the info regarding oxygen absorbed in fabrics. I did not know that. I live with smokers. I am going to have to ask them to cool it. I was also wondering if you knew anything about the rights of patients using this equipment. Since I am in a cluster bout and am just starting school again (I'm a teacher), I was wondering if they have to let me keep a tank at school or can they tell me "no".  I usually have had more bouts at night (mostly) or unfortunately during my summer vacation and this situation hasn't come up.

Just wondering, -Liz
Title: Re: Help me please!  *tears*
Post by Ted on Aug 14th, 2003, 2:47am
I'm not going to read through this whole thread and I'm sure someone else already said it but in case not, DOUBLED TO 180 of Verapamil? For clusters you shouldn't be started on anything less than TWO TIMES THAT!
Oxygen (O2) doesn't take 15-20 minutes to work. The suggestion is if after that long it has done nothing for you it probably won;t. Odds on that you'll realize some relief within 5 minutes.
Is it bad for you? Long-term use can screw around with your lungs. We all guess that means if you use it non-stop or on a high rate 10X per day for years like I had to until about a year ago. My lungs are fine, minus the smoking damage.
Title: Re: Help me please!  *tears*
Post by jon69 on Aug 14th, 2003, 2:53am
Hi Scooby and welcome


Quote:
I was wondering if they have to let me keep a tank at school or can they tell me "no".  


A lot of people here take there O to work with them.  Any decent employer would have the welfare of their employees at heart, and I'm sure they'll allow you to take the O to school.  After all, you're of no use to them with a full blown attack kicking off!
Title: Re: Help me please!  *tears*
Post by Woobie on Aug 14th, 2003, 2:56am
Sorry Jewel, that you're having a hard time.  Can't add anything, just wanted to send you some vibes...

and welcome scooby3

i never knew what to say... sorry


tina   :-*
Title: Re: Help me please!  *tears*
Post by jon69 on Aug 14th, 2003, 3:10am
BTW, if you're there Jewel, let us know how you're feeling :)
Title: Re: Help me please!  *tears*
Post by ksmiggy on Aug 14th, 2003, 8:39am
Daft as it sounds, i actually found verapamil made things worse, had more attacks whilst on it than when not on it, 3 months is very disheartening though,  i found a liquid filled mask ( leave in fridge till use) to be most helpful,  also, look carefully at the water solution , (posted on this site) have tried that with good results.
Title: Re: Help me please!  *tears*
Post by BobG on Aug 14th, 2003, 1:17pm
Hey Scooby. Welcome to the board.

Teacher huh? Hate to say it but sooner or later you'll probably get hit in front of your students. Use it as a teaching aid. I think if your students see it, they will be interested to hear about. Plus you'll be helping our cause to spread the word about cluster headaches.
Title: Re: Help me please!  *tears*
Post by Jewel on Aug 14th, 2003, 1:52pm
All I can say is "WOW".  You people are amazing.  Thank you for all your advice and compassion and understanding.  It helps so much to have that.  The good news is that I haven't had a cluster in almost 3 days now!  Woohoo!  Thanks again everyone!  
Title: Re: Help me please!  *tears*
Post by BobG on Aug 14th, 2003, 2:04pm
Jewel
I just realized this was your string but I was answering Scooby. Sorry about that.

Yes, we are amazing (he said blushingly).

Welcome to the board. Glad to hear you've had 3 pain free days. Hope more follow.
Title: Re: Help me please!  *tears*
Post by scooby3 on Aug 16th, 2003, 7:42pm
To anyone and everyone

I was wondering if any of you out there get hit with more than just the cluster stabbing behind the eye headaches. While that is by far the most excruciating, I am often getting very severe tension headaches simultaneously. Oxygen has worked great when I get the stabbing headache but it does nothing for the severe tension headache which feels like someone hit me on the head with a hammer (and if can last all day(s), unlike the cluster which goes away after 45 minutes or so. I just wanted to know if getting both at the same time was something common, or am I the only lucky one. Also, my neurologist just prescribed steroids to break up the cluster. I have never taken them before. Has anyone out there had any experience with them? I am starting a really bad cycle. Last night and this morning I was really in bad shape.

Any comments?  
Title: Re: Help me please!  *tears*
Post by jonny on Aug 16th, 2003, 7:52pm
1) Your the lucky one

2) Lots of people have been on steroids, hang....peeps will answer.

Been here everyday for nearly 4 years and your about the second person to mention the tension HA's that bad with the CH, stick around there is much to be learned

.....................................jonny
Title: Re: Help me please!  *tears*
Post by 2late on Aug 16th, 2003, 8:14pm
i have absolutley had luck with steroids......latley my only relief.....taking my 3rd taper pack in 3-weeks. cut the h.a.'s down to 3 or 4 in a day instead of 7 to 9. goin' to the hospital soon to hopefully break this fucked up cycle.                                                         .............Jack
Title: Re: Help me please!  *tears*
Post by UnsolvedEquation on Aug 17th, 2003, 11:12pm
Scoobie ... I guess WE are the 'lucky ones' because I get all types of different headaches, but not at the same time. Steriods have worked for me in the past but they have LOTS of side effects.
PS Don't be around any sick ppl while on the steriods !


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