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        New Message Board Archives >> Oct-Dec 2003 >> Just Found Out!!
        
(Message started by: mobmom on Sep 29^th, 2003, 3:32pm)

Title: Just Found Out!!
Post by mobmom on Sep 29^th, 2003, 3:32pm

I went to the doctor last week due to having these painful headaches off and on for about 4 months. They were getting worse so I decided it was time to see what was up with my head. The headaches were so painful that at times I wish I could've just opened my skull and pull out the part that hurt. I would cry from the pain! I am having them on the left side and about 50% of the time I experience the droopy eye. Water coming from the left eye. I thought it was stress or tension, but nope...I have CH!! My doctor did the usual first. CT scan and neurological tests. Waiting to get CT results Thursday, but in the meantime he did give me meds. He had me try Imitrex, but that didn't do a thing for me. So now I am taking Fioricet tablets every 4 hours as needed. To be honest they seem to be working. I do however get those shadow headaches still once and a while. I wouldn't wish this pain on anyone! Glad to see that there are other people out here that can relate to this madness. Just wish we all didn't have to suffer so much.

Title: Re: Just Found Out!!
Post by ave on Sep 29^th, 2003, 3:46pm

Dear mobmom, you probably don't want to be here, but if you have clusters, this is the place to go.

Have you taken the clusterquiz, under the buttons on the left of the screen?

Have you read all the information that's here?
You may have noticed, then, that pain killers are not highly regarded here, as to effectiveness, and Fioricet is a painkiller, am I right?

If it's clusters you are having, I would say they were in (temporary) remission rather than that the pain killers were working... Often cluster episodes end with a lot of shadowing.

So don't count too much on the fioricet next time around.
Ask your doctor about Verapamil, the accepted preventative. Ask about Oxygen (read about it too). It is easy to keep in the house, just in case a new episode blossoms.

Any questions you can't find in the archives or under the buttons, just ask.

Title: Re: Just Found Out!!
Post by OneEyeBlind on Sep 29^th, 2003, 3:49pm

Ave gave you some great info. So I'll just add my

Welcome to the board

Title: Re: Just Found Out!!
Post by don on Sep 29^th, 2003, 3:53pm

If you were to take no abortive meds how long would your pain last?

Title: Re: Just Found Out!!
Post by mobmom on Sep 29^th, 2003, 4:13pm

Lots of things to answer... Thanks for taking the time to ask me. I have taken the quiz and it did show that I was a typical cluster head! AS for the meds I am on. I believe the doctor only placed me on them for in the meantime. I will find out Thursday. I don't like taking pills anyway. Never was good at that. If shadowing is that piercing pulsing that you get after a major pain then that's me. I hate when that happens and it happens all too often. They start off minor and then tip the scales as far as I am concerned. I have always been told that I have a high pain tolerence, but this is just impossible! Even though I am taking the Fioricet I still can feel the pressure building up in my head! Whatever that means. And to Don.. I was getting them four to six times a day. Almost at the same time of the day and they would last anywhere from 10 to 25 minutes. I am new at these headaches so thanks for being so kind. Also when I was having a spell it would always effect my left ear for some reason. Hurt like heck too!

Title: Re: Just Found Out!!
Post by cathy on Sep 29^th, 2003, 5:17pm

Sorry to hear your plight mobmom...hope things get better for you....great site, a wealth of information....and a family who understand...hang in there...

PF vibes from across the pond...

Cathy

Title: Re: Just Found Out!!
Post by goaway on Sep 29^th, 2003, 5:25pm

WELCOME HOME mobmom !!!!

We're always here!

Title: Re: Just Found Out!!
Post by Prense on Sep 29^th, 2003, 5:28pm

10-25 minutes in duration? I would give Indomethican a try and make sure it isn't CPH.

Except for duration, all the other symptoms are the same as CH. Stay away from the narcs. Fioricet is for minor pain relief anyway...

From RxList.com:

Fioricet® (Butalbital, Acetaminophen, and Caffeine Tablets) is indicated for the relief of the symptom complex of tension (or muscle contraction) headache.

You did not describe a typical tension HA. What type of trex did you try? Injection, pill, NS? There is quite a difference. Anyway, injections kick ass...about 10 mins or so till PF, but if you are only having them for 10-25 minutes anyway..........

Title: Re: Just Found Out!!
Post by Charlie on Sep 29^th, 2003, 6:22pm

Welcome to the madhouse. Mine too lasted about 20 minutes. Clusters just seem to drain out of your head when they go....at least that was my case. They always wake one out of a sound sleep. No one can sit still.

Here are two helpful links:

The first is to a description of this disorder that does a wonderful job explaining to families, friends and employers what cluster headaches are and that they have little to do with what is thought of as a “headache.” The second is to a technique learned from a neurologist that works well for me and others.

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

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

Charlie

Title: Re: Just Found Out!!
Post by fubar on Sep 29^th, 2003, 6:45pm

Everybody is different...

Mine last for 20 minutes to 2-3 hours, depending on a lot of factors. If I'm really lucky, they are usually at the 20 minute end of the scale, but an INTENSE 20 minutes. I think I age 20 days in that 20 minutes. If I am not lucky, they go on and on. The worst was 3 hours of CH, not migraine. I know because I have both and there is no mistaking one for the other.

-Fu

Title: Re: Just Found Out!!
Post by Ree on Sep 29^th, 2003, 7:07pm

Welcome Mobmom............... We could use a MOB mom we are quite a MOB................ good luck and let us know how you are... and the results when you get them. Til then hope you are pain free.................ree

Title: Re: Just Found Out!!
Post by BarbaraD on Sep 29^th, 2003, 7:18pm

Welcome to Clustervile Mobmom Sorry you're here, but you've come to the right place.

Cafagot works for me, but I couldn't take the triptans. Excedrin ES works sometimes with a cup of coffee (the caffine in it I think) and O2. Something works sometimes and NOTHING works sometimes - it's just a crap shoot at best. Sorry that doesn't sound encouraging, but it's the way it is. We keep trying to find something that works and rejoice when we do.

My preventative is Topamax, but others have bad side effects with it.

Hopefully you'll be pain free soon, but stick around and be PREPARED for the next time - hopefully a long time away.

Hugs BD

Title: Re: Just Found Out!!
Post by UnsolvedEquation on Sep 29^th, 2003, 7:45pm

Welcome to the home of clusterheads !
I see you've already got some good replies and a pretty descent welcome.
My question is" Are you sure you have CH? " The reason I ask is because for most of us here (Prolly 99% of us) wouldn't get any relief from Fioricet. That would be like giving me an aspirin for an apputated leg. Sorry for the lousy anology
Unsolved
Glad your here but sorry you had to come too !

Title: Re: Just Found Out!!
Post by stevegeebe on Sep 29^th, 2003, 8:06pm

Welcome mobmom.

Maybe you could print out some of the dope from here (and links) and bring it with you Thursday.

Educate your Doctor.? Just in case.

Steve G

Title: Re: Just Found Out!!
Post by Chia on Sep 29^th, 2003, 8:22pm

Hi Mobmom....We just found out last week that my husband has CH also.....Charlie has suffered for 4 years on & off and never knew it had a name...He always thought it was allergies and was well mis diagnosed...Now thru the help of this site and the wonderful support that everyone has given us we are rowing our way to knowledge...so like they told me & Charlie...Grab an OAR & Hang in There :-/

Title: Re: Just Found Out!!
Post by mobmom on Sep 29^th, 2003, 8:34pm

Thank you so much for all of the support!! you guys are awesome. I have been reading up on all the info here and theres lots of it. If I am having CH I believe I am at the very beginning stages of them. Can't sleep sometimes and wake up with them at times too. It's impossible. I am thankful that you all have so much knowledge about this but also feel bad that you all are suffering from them or have someone you care about that suffers from them.
UnsolvedEquation...My doc thought I was having Migranes but Imitrex never did a thing for me, Excedrin never did either. My inlaw wants me to go to the chiropractor, but after reading on here that seems to not do much either. AS fasrt as the ing. in Fioricet, I knew ahead of time what was in them. I am pretty good at looking that stuff up. If it is going in my body I want to know what it is. They do not make me pain free, yet just seem to lessen it a bit. Had a bad one last night and today. Thought I was going to beat my head in. What I want to know is that if these are not CH then what the heck are they! Every where on here that I go it sounds just like me when people describe them, just sometimes mine are not as intense. Thanks again!! Hugs

Title: Re: Just Found Out!!
Post by Prense on Sep 29^th, 2003, 10:01pm

The only reason I mentioned Indomethacin is because CPH is sometimes misdiagnosed, and that is an easy way to find out. I, for one, would HATE to be chasing the miracle cure based on a misdiagnosis. Just clarifying...I was in no way trying to diagnose.

Chris

Title: Re: Just Found Out!!
Post by cootie on Sep 29^th, 2003, 10:19pm

From my mob to yer mobmom 'welcome' !!!! Am sure you'll learn alot of helpful stuff on here.......good luck to you and PF days ahead !! Pam that's a mob full

Title: Re: Just Found Out!!
Post by Callico_Kid on Sep 29^th, 2003, 11:54pm

Hi Mobmom and welcome. Wish you weren't here! :D

Ave gave you some good advice, and Don's question was right on the mark. Twenty-five years ago when I fist came down with CH my Dr put me on Fiorinol3 after trying several other narcotics. Fiorinol3 seemed to work for me if I used it to break a cycle by taking enough to knock me out, but as an everyday use it was worthless. By the time it gets into your system the HA is basically over unless you have one that lasts for more than an hour. The Fioricet is probably helping with the discomfort that sometimes follows an attack, but in my experience will do nothing for the CH itself. All that I found the narcs did was to create a dependency and to cause HAs when I tried to quit taking them. Please don't take this as criticism, as it is not. We are only trying to help based on where we have already been, and trust me you don't want to go there!

Keep reading, and remember, IT WILL END!

Jerry

Title: Re: Just Found Out!!
Post by mobmom on Sep 30^th, 2003, 1:43am

:)Thanks everyone! I agree Callico_Kid, I am afraid that the narcs will cause a dependency. hopefully with the CT scan and tons of blood work the doc had me to do last week he will be able to give me more insight on my problem. I have not been to a neurologist as of yet. Maybe my internal Med. doc will send me to one if needed. Has exercise helped anyone here? I was curious if Cardio has helped. I have a glider that I can use, but I didn't want to jump aboard it again if it will increase the madness. The type of Trix I tried was the tablet form. Chris, Thanks for all of your input. I totally appreciate you for every bit of info you can give me. I hope I didn't make you think I was making you out to be someone that was trying to diagnose my HA. Hugs!!! :)

Title: Re: Just Found Out!!
Post by ave on Sep 30^th, 2003, 2:38am

Mobmom, a you can see in the archives, Trex tablets do very few people any good.

Since your attacks are relatively short, Trex tabs are too slow and only start to attack when the enemy is gone!

Vera takes some time to build up, but works for many.
and please do look into O2.

I hope for you that you have something easy to remedy, but seeing that you have your attacks like clockwork...

Hang in there.

Title: Re: Just Found Out!!
Post by badfly on Sep 30^th, 2003, 5:12am

Welcome mobmom

All good advice so far :-) One thing about the Trex is that in tablet form it usually takes around 25 to 40 min to get into your system and work. I would advise DEMANDING a sample of Imitrex injection and try it out. The injection should provide relief in 5 to 10 minutes. Dont write off the Trex just yet, try the injection!

Title: Re: Just Found Out!!
Post by Turts on Sep 30^th, 2003, 5:47am

Weclome Mobmom,
Sorry that you had to type clusterheadaches into the search engine, but since you did welcome to your new homeand family.

Turts

::)

Title: Re: Just Found Out!!
Post by mobmom on Sep 30^th, 2003, 3:01pm

Thanks for all the wonderful information and welcomes. Hope everyone has been having a pain free day so far. I have had two episodes myself. Seems like the meds the doc has me on so far are beginning to not be as effective anymore. Hmmm. Wonder what he'll say on Thursday?? Till then.. Have a good one. :)

Title: Re: Just Found Out!!
Post by goaway on Sep 30^th, 2003, 8:26pm

on 09/29/03 at 18:22:52, Charlie wrote:

Welcome to the madhouse.

Who's mad Charlie? I love you guys.
Oh............
I see your point. :D

Title: Re: Just Found Out!!
Post by mobmom on Oct 2^nd, 2003, 2:25pm

Well..I went to the doc today only for him to call and say that he's not making it in! What a pain! The head nurse was kind enough to give me my test results. All my bloodowrk was great nothing there to complain about. AS far as the CT scan, it too was great! So, now what I ask? She told me to continue the Fiorcet until I can get another appointment with him. I don't know which is worse...waiting over an hour for the primary Care docs or getting in with my PPO and him calling in for the day! UGH!!!!!!