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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello
        
(Message started by: ShannonJ on Jul 7^th, 2004, 2:46pm)

Title: Hello
Post by ShannonJ on Jul 7^th, 2004, 2:46pm

Hi, My name's Shannon. I'm 27 years old and this is only the third time I have gone through this horrible pain. I was diagnosed about 3 years ago and to be honest I thought I was going to die. The first time I experienced this ungodly pain was in November of 2000 and then I didn't go through it again until November of 2002. So needless to say I am very suprised to be going through this now. This episode started the begining of June and has been non stop on and off every day since then. It is 2:246 PM and this is only the second time since 5 am that I haven't felt like my head is on fire. I am so glad that I found a site where I can find other people to relate to how I feel. I have tried to explain the pain to my friends and family and I don't think that they can even imagine what I am going through. I wish this on NO-ONE!

Title: Re: Hello
Post by E-Double on Jul 7^th, 2004, 3:00pm

Welcome friend!
You have found a wonderful place where you will be supported all around. A beautiful thing which we all need.
So many things to share and learn and to take from the people here. Truly amazing!!!

Best to you and may you have many a pain free day! ;)

Eric

Title: Re: Hello
Post by ShannonJ on Jul 7^th, 2004, 3:03pm

Anybody with advice on some medication that will work. Imitrex doesn't work for me and I've tried god only know's what else. The only thing I have found that helps me is Maxalt but my doc. says you can only take 6 a month and I have taken my second refill in one weekend. Any sugestions would be great! :(

Title: Re: Hello
Post by jonny on Jul 7^th, 2004, 3:11pm

Breathing 02 at onset helps abort for lots of us, The stuff is like gold to me.

Welcome aboard

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

Title: Re: Hello
Post by ShannonJ on Jul 7^th, 2004, 3:14pm

Thank you so much..May sound stupid but what is that..Is it like breathing pure oxygen? I would kill for what ever it is right now.. I wish I could put something cold in the side of my face to stop the burning!

Title: Re: Hello
Post by jonny on Jul 7^th, 2004, 3:22pm

Yes, pure oxygen, used at 15 liters per minute with a non-rebreather mask. You can also add a bubbler (Its like a bong) that you can put ice and water in for some nice COOL 02 ;;D

Talk to your Doc

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

Title: Re: Hello
Post by Superpain on Jul 7^th, 2004, 3:23pm

on 07/07/04 at 14:46:27, ShannonJ wrote:

It's funny how some people describe their pain/headaches etc... And we're like"ummm... I don't think you have cluster's...."
Where as you didn't describe any specifics of the headache and it's clear you have cluster's.

Yeah, get some O2! Read up. ask questions. Get informed, and you can find relief.

BTW why does imitrex not work?

Was it pills, spray or injections?
I never had any luck with any of it except the injections.
Zomig nasal spray is a favorite around here to, if indeed trex is useless to you.

Title: Re: Hello
Post by ShannonJ on Jul 7^th, 2004, 3:24pm

Thank you so much..I've done the oxygen before at the hospital and it did work a little..My Doc. sucks I'm gonna have to look for a new one. She never wants to try anything new and I need something that's gonna work.
Again thank you so much!

Title: Re: Hello
Post by Superpain on Jul 7^th, 2004, 3:25pm

on 07/07/04 at 15:22:26, jonny wrote:

But whatever you do DON'T LIGHT IT! [smiley=smokin.gif]

Title: Re: Hello
Post by ShannonJ on Jul 7^th, 2004, 3:27pm

The Imitrex was pills and I tried so me kind of spray stuff before but none worked. I'm definatly going to look into that o2 because this has been a month of hell. I'm trying to make it through the day at work and I don't know howmuch more I can take

Title: Re: Hello
Post by Superpain on Jul 7^th, 2004, 3:40pm

O2 is the best. If you can't get a script for a regulator that delivers 15 lpm, talk to jonny or me to find out alternatives. His is a little fancier than mine, but they both work.

I'd suggest trying the injections also for when you are away from the O2. With your docs approval of course...

Title: Re: Hello
Post by ShannonJ on Jul 7^th, 2004, 3:45pm

I already put a call in to my doctor..If that doesn't work then trust me when i say I will be asking for some alternative solutions!!! Thank you so much!! Again!!!

Title: Re: Hello
Post by marfanoidus on Jul 7^th, 2004, 5:13pm

Hey Shannon. Definitely try the oxygen, and like has already been said, use it at the onset of the CH. For me, if I wait too long (meaning once the suicide pain has started to spike), the 02 seems to take longer to abort the pain.

Also, your doc said MAXALT can only be taken 6 times a month??? I have NEVER heard that [smiley=huh.gif]. In fact, I've had 3 physicians (1 in Oklahoma, 2 in Texas) give me free samples and tell me no more than 2 a day (of the kind that dissolve on contact in your mouth). Maybe you were taking something else that was hard on your liver??? Maybe your doc is politely protecting you from some restrictions in your health plan??? Maybe your doc doesn't know diddlee-squat about what he's prescribing :-/?
Sounds to me like you should find a different doc - a neuro preferably, or GP that is at least willing to look into the wide range of meds used to combat CHs.
I would also suggest talking to your (hopefully new) doc about a tapering round of Prednisone - it worked awesome for me, and was prescribed by a physician who only works headaches, nothing else, and really knows her stuff.

Listen, help is out there, good help, for most of us clusterheads. My last round was 3 years ago, and I'm in the downswing of one now (or the meds are REALLY working - I can even drink a few beers before the demon starts to stir ;;D), but let me say that just in the last 3 years there is more information to use and meds also to combat these damnable HAs. BUT - you must see someone who keeps abreast of HA treatments or pain management at the least. You have to remember, less than 1 in 1000 people have CHs, so most GPs are not going to stay up to date on their most effective treatments. Unless you're seeing a neuro, you are more than likely the one and only CH patient your doc has ever had or ever will have. When we look at it like that, its easier to accept the possibility that GPs are probably not our best source of help for this condition, and easier for us to proactively find help for ourselves. My GP prescribed Midrin - 2 at the onset and 1 more every hour until you take a total of 5 pills. Imagine prescribing that for a CH!!!! What an idiot! Then when I went to see the specialist I started getting a headache in her office - because of her expertise I didn't leave with it, and have done spectacularly ever since, considering that we're talking about CHs.

What worked for me was the tapering Prednisone combined with Caffergot and Verapamil. And I was up to about 6 per day, with the doom that comes with them, missing work, and blah blah blah, but that med combo kicked my cycle in the ass. Don't settle for less, not now.

Good luck, and get the O2, no matter what. It seems to be one of if not the best abortive for many of us.

walt

Title: Re: Hello
Post by FZfan on Jul 7^th, 2004, 5:50pm

on 07/07/04 at 15:24:39, ShannonJ wrote:

Thank you so much..I've done the oxygen before at the hospital and it did work a little..

So much great advice given so far, I really can't add anything new, but I will hit on this point again because it is so important - chances are your hospital experience was at low pressure (<10 lpm) and with a canola or regular mask.

You MUST have high lpm pumping into a NON-REBREATHER mask. This is a very specific type of mask. Anything else will be less than effective.

Unless you just suck directly on the hose (no entendre' intended ;;D). Ask Superpain about his method for breathing o2 without a mask.

To quote jonny,

Quote:

The stuff is like gold to me.

Welcome to clusterville Shannon. You have come to the right, and possibly the only, place for help and support. Read everything you can around here, especially the links to the left. Keep us posted on how you're doing.

Title: Re: Hello
Post by 911please on Jul 7^th, 2004, 6:10pm

Hiya Shannon, I am another newbie here... My Doc who has been seeing me since 1981 gave me Zomig about three years ago. They seem to knock the beast down until the next bout or usually the day.
Next, this years bout started 15 days ago for me and last friday Doc gave me Axert....almotriptan malate 12.5 mg.
These have been helpful about 85% of the CH's since I got them. The other 15 % have had to run their course and keep me screaming, moaning, crying, praying..

I am going to get the o2 order from the doc tomorrow any try that out...

anything to tame the beast..

Doug...

Title: Re: Hello
Post by BlueMeanie on Jul 7^th, 2004, 7:53pm

Welcome Shannon !!!

Not much to add here. When you do get a chance to discuss options with your doc, print the 02 info and take it with you. It's not easy to get a 15 ltr. flow regulator & mask unless your doc already knows what it takes to stop a cluster. The Trex injections works the best. Make sure you have dialog with the doc to insure it is safe for you before getting a script.

Sending pain free vibes your way.

Title: Re: Hello
Post by Kris_in_SJ on Jul 7^th, 2004, 8:10pm

Hi Shannon,

Sorry you have to be here, but glad you found us. You've already been given much great advice. I'll only reinforce it by saying "get yourself to a new doc!" Clusterheads need a doc who will listen, who's willing to try new things, and/or is very familiar with the latest & greatest treatments for this syndrome.

O2 is great , as are Imitrex injections (my personal favorite). Forget the Imitrex pills - take much too long to work for clusters. But all the abortives in the world won't help for long unless you're also taking a prevent like Verapamil. Prednisone tapers also help until the prevent kicks in.

Keep reading - print out some of the linked articles - and take them with you when you see the next doc.

Sending hugs and best wishes,

Kris

Title: Re: Hello
Post by ShannonJ on Jul 19^th, 2004, 11:14am

I just wanted to thank everyone for their awsome advice and support. I haven't gotten a neuro yet but I started seeing a new doc. He gave me verapamil 120mg to try as a preventative and imitrex nasal for the pain when they do come. I've had a good experience so far with the nasal spray. I've timed it and the longest it's taken to calm the attacks down is about 15 minutes. That's 15 minutes of tourture but better then an hour and a half. I haven't gotten the o2 yet but still trying. My cycles finally seemed to have slowed a little. I've gone from 5 a day to 1-2. So hopefully I'm almost done. I just always feel like I have this pressure in my head like I need a head massage! LOL :-) Again thank you all..This site has been a TREMENDOUS BLESSING for me!

Title: Re: Hello
Post by pubgirl on Jul 19^th, 2004, 12:59pm

Hi Shannon

A bit late to this but one add on bit of info. If your cycle isn't ending (hope it is), the Verapimil dose is probably too low to have any effect. The starting dose recommended by the CH experts here is 80mg quick release tablets taken three times a day at regular intervals. Most people need more than 240mgs a day for any effect. This is then increased gradually every two weeks up to 960mgs a day until prevention is achieved. An ECG should be done at each increase.
The slow release Verapimil (often labelled SR) is not recommended.

Hope this helps

Wendy