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        New Message Board Archives >> Jan-Mar 2004 >> Input please? (updated)
        
(Message started by: catlind on Mar 28^th, 2004, 11:03am)

Title: Input please? (updated)
Post by catlind on Mar 28^th, 2004, 11:03am

Ok, I was up all night Tues. night with a flu bug of some sort, and Wed. I woke up with a terrible headache - of the migraine strain - but hurt like hell in all the normal cluster areas - no symptoms of a cluster attack though.

Thurs. Clark took me to the ER, they shot me up with demerol, I went home and slept, woke up Fri. morning headache was still there, called the nurse they said go back to the ER. They gave me nubane and sent me home. 2 hours later head was hurting even worse still, Clark called the ER doc and he said bring her back in. They gave me IV fluids thinking I might be dehydrated, another 100mg of demerol and they wanted to admit me. I lied and said my head was better because I didn't want to be admitted. The shots had dulled the pain, and I went home and slept til Sat. Woke up Sat. morning no headache until around 10 a.m. and it started back up again. I toughed it out using tylenol, aspirin and naproxen hoping that would kill the 'migraine' that it seems to be.

Sat night I was hurting pretty bad, again migraine style, but much worse on the cluster side with no cluster symptoms. Woke up this morning, head is still pounding and I'm rather miserable.

If I go back to the ER like Clark and the nurse want me to, they will admit me. I don't wanna be admitted, I don't like hospitals, they screw up too often (my experience).

Should I have let them admit me? Should I go back in and let them admit me? Should I just tough this out and hope it will go away soon?

Sorry folks, but I'm lost as to why this headache won't break, I've never had a migraine that didn't respond to anything - tylenol, excedrin migraine, aspirin, naproxen, imitrex (1/3 shot cause that's all I'm allowed to do) vicodin, demerol, and nubane. WTF is going on and WTF do I do about it??

Thanks for letting me rant, anyone with ideas or suggestions PLEASE let me know!

Cat

Title: Re: Input please?
Post by Melissa on Mar 28^th, 2004, 11:09am

Cat, you've tried to ride this out already and so far, no luck. I hate to say it, but I really do think you should be admitted. I don't know how military ER's work but perhaps you could request a CT scan just to be sure? Also, is there a viral flu going around by you? That can cause headaches too. Better to be safe than sorry! I really do hope this all stops for you right away!

hugs,
:)mel

Title: Re: Input please?
Post by Renee on Mar 28^th, 2004, 11:15am

cat,

the demerol could not stop my last ha that was not a typical ch but hurt more on the ch side. on the 4th trip to the e.r. in a week they finally gave me dilaudid and phenergan via i.v. with a bag of fluid and that did get me pain free. 125mg demerol was not even touching the pain but i got 1mg i.v. of dilaudid and went into a pf but f'ed up state.

if ya don't want to get admitted, ya might try and see if they'll try the dilaudid as you might be getting rebound ha from the demerol????

just my opinion and i was in your shoes last week!
call me if ya need to talk
hugs and love
renee

Title: Re: Input please?
Post by cootie on Mar 28^th, 2004, 11:29am

I'll tell ya what.....I know you all don't like that meegrainer word but them sum bitches stick around for weeks sometimes.....come and goin at times. I cup by hand and place them (cupped together) behind my neck with palms buried into the base of my neck as if it was a neck brace deal. I position my head so that my hands are actually liftin my head up a bit and lettin pressure off my spine....usually ya gotta bend yer head forward as ya postion your hands on backa yer neck then set yer head normally and that will do a little bit of a lift. I sit that way holdin my head "still" for a while and get some relief at times....depends.....(mine come from damaged discs or tension added to that).... it helps alot sumtimes and saved my ass and I jus don't move a while at all. Hope that made sense.......it's helped me at times......but the bad ones I jus punch myself till people start grabbin my hands and practically hold me down. (now DON'T you go and do that ok) I am told to start on muscle relaxers for those to lighten up spasms....not sure if yours is spasm or chemical imbalance nature....good luck.... I hope this MAYBE helps a bit for you....head pain friggin hurts.......no matter what type it is. Punchy Pam

Sorry if I am totally off here for any relief......jus tryin that's all..........................

Title: Re: Input please?
Post by Donna H. on Mar 28^th, 2004, 12:49pm

I would guess that it's time for some diagnostic work, Cat. Could be a lot of things.....some just virus' and some serious, but you already know that.

Do they have to admit you just to do tests?

Title: Re: Input please?
Post by Karla on Mar 28^th, 2004, 1:00pm

I am so sorry that you are going through this Cat. Yes, I think you should be admitted. Better safe than sorry and then you can get some limited relief at least. Dilaudid always works for me where morphine and demerol wont touch it. I will be praying for you.

Title: Re: Input please?
Post by pubgirl on Mar 28^th, 2004, 2:09pm

Hello Cat

I'm so sorry this is happening to you.
Every sympathy for the duration of the pain. However unpopular this may be, I think the intensity of a CH is beyond anything, but the length of time a migraine can hang around for me can be just as debilitating.

Have read everything about what you have tried it seems pretty comprehensive. Can only add from personal experience that I use my 02 or triptans (which I know you've tried) or I use nothing at all and drink loads of water and try and sleep.

If you have any 02, give it a go. Failing that, sorry, I'm with the others and think you should get this checked out.

Good luck, let us know or we shall worry

Wendy

Title: Re: Input please?
Post by bobkip on Mar 28^th, 2004, 3:00pm

Cat, I hate hospitals too but it sounds like ya need a stay. Good luck.
Kip

Title: Re: Input please?
Post by cootie on Mar 28^th, 2004, 4:23pm

diagnostic work..........yeah I agree.....sounds like that should be done.....better safe then sorry. I was more or less thinkin along the line of rebound ha's from the meds or tension or stress ha's from all that has been goin on. Best get it checked out ......hope everyting is ok. Good luck well wisher Pam

Title: Re: Input please?
Post by Charlie on Mar 28^th, 2004, 6:08pm

This sounds nasty. I've never had migraines. Had some really nasty sinus one that nearly sent me to the er. Took 15 aspirin one day. This sounds worse. My feeling is that you'll know when and if it's time for admission. It's the way we're built. I know just how you feel though and I'm a real pain about admissions now.

Again: How about one frigging thing at a time? >:(

Charlie

Title: Re: Input please?
Post by Mark C on Mar 29^th, 2004, 12:24am

Please go to the Doctor. I hate em too but it sounds like time. Don't wait for the "meat wagon" to take you. We need you so take care of yourself. [smiley=hug.gif]

Mark

Title: Re: Input please? (updated)
Post by catlind on Mar 29^th, 2004, 10:15am

Well I was in the hospital from 11 a.m. until 7 p.m. last night.

They hooked me up to an IV again and gave me phenergan and 125mg of demerol. It didn't get rid of the pain on the cluster side (still not a cluster attack though) but dulled everything. The doc said yes it's time for admission and called in a resident to evaluate me.

The doc that came in went over everything, and when he found he couldn't give me morphine said he was at a loss as to what to do. So he called in a neuro and he came in and saw me.

By this time the demerol was wearing off and I had one mother of a rebound from the demerol. A very distinct difference to the other headache. He was going to admit me and do a course of DHE - until he found I can't have DHE because of the coronary artery spasms. Once again, both docs kept saying 'interesting'. For anyone who doesn't know, that's a bad thing coming from a doc - it means they don't have a clue.

They gave me IV Reglin?? not sure what it is, but I think he said it was a GI med. At that point my head ramped right back up and I couldn't lay down, couldn't walk around couldn't do anything except go nutty with the pain. They decided that the best course of action at this time, since the demerol was causing rebounds on top of the other, that they needed to stay away from any narcotics to give my head a chance to recover. 24-36 hours he said. So they gave me IV valium and gave me the option of staying inpatient for IV valium every 4 hours or going home and taking oral valium and phenergan every 4 hours to keep me unconcsious until this passes.

I just crawled out of bed now, and I have to go in again today at 10 a.m. for follow up and see what's going on from there. The rebound is gone, but the other headache is back.

I will be getting my referral to the neuro of MY choice today, (Dr. Tepper at NECH) and they said they'd make sure tricare would cover it. (we'll see about that one - tryandgetcare isn't known for helping). So for today I'm supposed to stay unconcious (except for docs office) and hopefully the sleep will let it clear on it's own.

They don't know what's causing it, but are going to review my ct's and mri's today and see if they need to do another one. I'm going to be demanding an MRA as well. I've had several people tell me that dilaudid is the way to get rid of this so that will be next move if this doesn't let up.

There were ALOT of people in the ER yesterday with this flu bug, so it may well be my bodies way of manifesting this damn bug. I don't puke easily, so the nausea may be there from the bug.

Anyway, if they let me come home again after today's appt I'll give an update, if they admit me today then I'll have Clark update.

While the pain doesn't measure to a cluster, it's easily hits a kip 6-7 in a different way. It's not a boring piercing burning a hole in my temple and eye pain waiting for my eye to explode - it's a throbbing pounding hurts like a mother pain on the CH side, and no autonomic features of CH. So we'll see.

I'm under strict instructions by the spousal unit to stay unconcsious hehe.

Thanks for the input guys, it means alot and it helps more than you know! I can always count on my family :)

Luv ya

Cat

Title: Re: Input please? (updated)
Post by cootie on Mar 29^th, 2004, 10:24am

We had that flu stuff goin around even tho we had flu shots 'again'. And seems to me it started out as a nagging full head aggravateing dull ha for a few weeks.......Brad ended up with bronchial pnemonia which he has never had before......was worried he was goin back into cycle cuz of the shadowy head crap.......I had the worse sinus infection I have ever lived thru and lasted quite a while. Felt exactly like a baseball was implanted into my sinus left to sit. So....maybe....jus maybe suma this is BUG related ? Nasty shit goin around these days and seems to almost mimic "very" serious conditions.....scarey shit. Good luck.......Pam that hates peukin

Title: Re: Input please? (updated)
Post by bobkip on Mar 29^th, 2004, 3:24pm

Thanks for the update Cat. Interesting. Keep us posted.
Kip

Title: Re: Input please? (updated)
Post by echo on Mar 29^th, 2004, 4:28pm

on 03/28/04 at 11:03:58, catlind wrote:

, anyone with ideas or suggestions PLEASE let me know!

Cat

Sorry that your head is hurting the way it is Cat. A possible solution would be to take two vise grip pliers and apply one to each nipple. Sure as hell will take your mind off your head for awhile. :-/

I'll STFU now.

Title: Re: Input please? (updated)
Post by Lizzie2 on Mar 29^th, 2004, 4:43pm

Hi Cat,

Not to sound scary, but January 17, 2001...I got a headache like that....it hasn't left yet. It has made my life an absolute living hell.

But if they catch it early (if it is something like status migranosis...perhaps) then it usually stops it from becoming the nasty never ending type.

Reglan is an antinausea med often given before DHE treatment because DHE makes a lot of people sick. Narcotics usually don't take it away. I was put on IV dilaudid and it made me a whole heck of a lot worse. When I check into the hospital for it now (for 2 weeks every 5-6 months), they give me Reglan or Zofran, DHE, Thorazine, Magnesium, Droperidol, Depacon, Salumedrol..not sure if there is anything else I'm forgetting. I've also had special treatments done a few times, but that's usually after they try the normal stuff for 5 days to 1 week.

I hope you're not getting this "beast" too. Mine has been treatment resistent to the over 40 meds we've thrown at it, and it doesn't look like it is ever going to go away at this point.

Better if you get on top of it right away though!!

Good luck and you are in my prayers!
Lizzie

Title: Re: Input please? (updated)
Post by Lizzie2 on Mar 29^th, 2004, 4:52pm

I forgot to add this:

My headache type that I was writing about (besides the fact that I have CH) is called New Daily Persistent Headache. It is very often known to be started by a virus of sorts. I had a severe lung infection, sinus infection, and ear infection shortly before I got the headache. They don't know if that is what caused it for sure, but it is a theory.

I had NDPH before I had CH, and the migraines I had been getting all my life did not increase in intensity prior to getting NDPH. Also, mine was not from medication overuse.

Usually NDPH occurs in someone without a history of headache or without increasing migraine and tension headache to the point where it becomes continuous. Have no idea if it would apply if someone goes from CH first!

Just wanted to share my experience....I know how much it sucks...

Hugz,
Lizzie :)

Title: Re: Input please? (updated)
Post by Elaine on Mar 29^th, 2004, 8:46pm

Cat prayers are coming your way from my house. My whole family is praying. You been through so much, you need a break from any pain.

You take care and know we are with you!

Love ya Lady!

Title: Re: Input please? (updated)
Post by broomhilda on Mar 29^th, 2004, 8:48pm

Wish I could provide some input as to whats going on...

Please do take care, you are in my thoughts and prayers,hope this goes away really soon for you

Please keep us posted!

Andrea

Title: Re: Input please? (updated)
Post by Ree on Mar 29^th, 2004, 9:22pm

Sorry Cat~~~Welcome to my world................If you don't kill them right away sometimes you have to ride the storm out... sounds as if you should have let them admit you... When I get that type of headache since my Meningitis the place that I had the Meningitis head pain is excruxiating... must be a tender used up place just like your cluster spot... I am so sorry. With all the pain you have to endure this should not be added as well... Love to you and Ole Patient Clark... he is a trooper... and a keeper... give him a squeeze from this comrade supporter. Love ree

Title: Re: Input please? (updated)
Post by Mastifflvr28 on Mar 30^th, 2004, 9:59am

Cat,
I'm checkin to see if you are still unconcsious, or if you are feeling any better??
Sending up PF vibes!!
Mast

Title: Re: Input please? (updated)
Post by catlind on Mar 30^th, 2004, 11:16am

Hiya folks

Well I have my appt with the NECH on the 8th of April. The doc I went to yesterday told me that any treatment for me was well beyond her realm, and even though I might be angry with her for that, that was how it is. I told her I much prefer a doc be upfront and tell me they don't know than bumble their way through.

The current plan is to continue with valium and keep me semi to un conscious until I can get to the neuro.

The tough part now will be getting tricare to pay for it.

She wouldn't even put me on zonegran, again, too far out of her realm for comfort.

Not sure what I do now, when the head acts up real bad I just get to go into full panic and rage mode until the valium knocks me out. This sux bad.

Hopefully NECH will be able to help me out. Admission is out of the question because there's nothing they can do for me - morphine is out and DHE is out.

I asked about Dilaudid and they said that isn't an option with the base hospital. They say it will just make things worse with rebounds. Right now I'll take the fucking rebounds over this shit.

I'm at the end of my rope and have told Clark repeatedly that it's a good thing we don't own a gun, but that sticking my head under moving tires is a definite option.

We'll see how things go from here. I was told by a friend and colleague (no names) that it's not uncommon to have a week long migraine that is treatment resistant. I guess that helps, doesn't do me any good, but at least Iknow I'm not a freak (no comments fromthe peanut gallery).

As soon as I can coherently make touch with reality I'll let you all know.

Thank you all so much for the support. I still welcome any and all input. I've gotten a few suggestions in email, most of which I have used before, a few that I haven't so that's my next step I guess.

Cat

Title: Re: Input please? (updated)
Post by BruceD on Mar 30^th, 2004, 11:44am

on 03/30/04 at 11:16:37, catlind wrote:

I guess that helps, doesn't do me any good, but at least Iknow I'm not a freak (no comments from the peanut gallery).

Drat! I guess I can't add anything then. Sorry to hear of your most recent ills & I'll be prayin' for you. BTW, the trigger wasn't anywhere around you was she? Nah, couldn't be ... you'd have probably had a fire or flood or locusts or something else to go along with the HA.

Later
BruceD

Title: Re: Input please? (updated)
Post by 357Mag on Mar 30^th, 2004, 12:44pm

Quote:

I asked about Dilaudid and they said that isn't an option with the base hospital. They say it will just make things worse with rebounds.

Cat,

I have been through all sorts of pain meds that have caused rebounds. Including morphine and dilaudid when in motorcycle accident.

The ONLY pain med I have found to kill the pain and not cause a rebound is Oxycontin.

I self-med'd for 3 months using my dad's cancer scripts after he passed on. I used em for HA's, in-place of the 'cete' c-rap the docs gave me after the accident and for my bad arthritic knee. No addiction, no rebounds. Had anywhere from 20mg fast-act for break thru pain to 160mg time-release tabs.

Hope this info gives you another option.

Peace,
dan

Title: Re: Input please? (updated)
Post by TomM on Mar 30^th, 2004, 1:12pm

Cheese and Rice, Cat!
Stop effing around and get better.
I'm praying for you.
TomM

Title: Re: Input please? (updated)
Post by Leesa on Mar 30^th, 2004, 1:41pm

Tricare pay for something?? LMMFAOROTF now thats a good one!!! Good luck on that one girl!! If they cover it Ill be in :o to say the least. I sure hope they do for your sake & the for you family. I hope you find some MUCH needed and wanted relief very soon dear and know your in my thoughts and I got the vibes goin for ya!! Keep us posted on whats goin on gal!!!
Leesa