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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Grrr ... 1-2-3- BANG
        
(Message started by: Sylvan on Dec 9^th, 2004, 10:46am)

Title: Grrr ... 1-2-3- BANG
Post by Sylvan on Dec 9^th, 2004, 10:46am

I suppose i should try to find a silver lining in this.

I've been getting hit only every 3-4 nights for the past week or so. Just when i start to feel good - the beast wakes me up at 1:30 am again.

Last night - Kip 7 - but only lasted about 35 minutes.

The only upside i can think of right now is that i can honestly tell the neuro that they are still happening when i go at noon today.

I've actually been fretting a bit that he was going to refuse to give me any kind of abortive etc - because i hadn't had a headache in a few days.

Wish me luck!

Sylvan

Title: Re: Grrr ... 1-2-3- BANG
Post by nani on Dec 9^th, 2004, 11:33am

Yep...push for an abortive. Why suffer more than necessary? Go girl! PF wishes yo you, hun.

Title: Re: Grrr ... 1-2-3- BANG
Post by becky8 on Dec 9^th, 2004, 11:34am

I am sorry, I missed what kind of meds are you on? Have you tried melatoin at night? Works good for my night hits and alot of other people's too!

Title: Re: Grrr ... 1-2-3- BANG
Post by Bob_Johnson on Dec 9^th, 2004, 11:59am

I'm puzzled! Why would a doc who has diagnosed Cluster NOT provide an abortive? (Are we missing some information?)

I suspect most of us keep an abortive on the shelf even when we not in an active cycle. I've had Zyprexa go out of date it has been so long since I needed it--but there will always be a fresh supply on the shelf, just in case.

Title: Re: Grrr ... 1-2-3- BANG
Post by Sylvan on Dec 9^th, 2004, 4:17pm

Quote:

Posted by: nani Posted on: Today at 11:33am
Yep...push for an abortive. Why suffer more than necessary? Go girl! PF wishes yo you, hun.

Thanks for the wishes. Unfortunately - still no real abortive. We discussed several - but Dr did not rx one yet.

Neuro said that my headaches may or may not be clusters. He said that everything was consistant with clusters except that they are only happening at night with any severity. He wants to rule out somehting called hypnic headaches which are similar but only occur at night first.

Hypnic HA's however are mostly (80%) bi-lateral and often have associated nausea. Mine are unilateral and do not include nasuea. Hypnic also rarely occur in people under 55.

He added lithium carbonate and indomethacin to my pharamcopia. Said that if these are in fact hypnic - the lithium has 100% effectiveness in stopping them cold.

If the lithium does not stop them in 10 days - we're going to get an MRI and consider that they may in fact be clusters - just not happening as often as is normal. He said he has many cluster patients and less than 20% are women - also 100% have both nocturnal and daytime hits.

Quote:

Posted by: becky8 Posted on: Today at 11:34am
I am sorry, I missed what kind of meds are you on? Have you tried melatoin at night? Works good for my night hits and alot of other people's too!

Becky:

My meds are

verapamil 80 mg TID
monopril 10 mg (for high blood pressure)

and just added:

lithium carbonate 300 mg
indomethacin 25 mg

I tried the melatonin about 3 weeks ago - and i had 3 hits that night so didn't take it again.

Quote:

Posted by: Bob_Johnson Posted on: Today at 11:59am
I'm puzzled! Why would a doc who has diagnosed Cluster NOT provide an abortive? (Are we missing some information?)

Bob:

The Dr that dx'd CH was my GP. She referred me to the neuro for further treatment. He has not yet officaily dx clusters.

Thanks & PF wishes to all of you!
Sylvan

Title: Re: Grrr ... 1-2-3- BANG
Post by Biker on Dec 9^th, 2004, 6:20pm

Lithium is suppose to work, but did not phase mine. I hope you have better luck than I did. Its suppose to work for most folks. For a long time, I only got hit at night, after a few years, I started getting them in the day also. It takes a while to find your personal silver bullet. Wishing you quick success.

Title: Re: Grrr ... 1-2-3- BANG
Post by thudpucker on Dec 11^th, 2004, 2:26am

on 12/09/04 at 16:17:43, Sylvan wrote:

I tried the melatonin about 3 weeks ago - and i had 3 hits that night so didn't take it again.

It took two or three nights for the melatonin to be effective for me, but I've been pf for about two months now in what should be the peak (pits?) of my cycle.

Title: Re: Grrr ... 1-2-3- BANG
Post by toolong on Dec 11^th, 2004, 8:57am

Tried Lithium for a period of 4 weeks, stoned me out so bad I walked into a wall.Needless to say it never even touched my CH.I've heard it does wonders for some people but no silver bullet for me.02 is my drug of choice. :)David

Title: Re: Grrr ... 1-2-3- BANG
Post by Sylvan on Dec 11^th, 2004, 9:14am

Haven't had a noctural HA for 2 nights now - but then again - i'm currently going 3 days between before the lithium.

Stuff knocked me for a loop the first night - and the second night - i barely slept at all.

But i did get daytime HA's yesterday - 2 of them - not as severe as the night ones - but pretty bad never-the-less.

Does that rule out hypnic? or did the lithium cause the additional HA's?

Grrr ... This is frustrating.

Title: Re: Grrr ... 1-2-3- BANG
Post by don on Dec 11^th, 2004, 10:19am

Quote:

still no real abortive

Thats complete bullshit.

The standard abortives are used for all types of headaches hypnic or not.

You might remind him that a Doctors ethical duty is to stop pain and cause no futher harm. With holding abortives is unethical. Pure and simple.

Title: Re: Grrr ... 1-2-3- BANG
Post by nani on Dec 11^th, 2004, 10:34am

Yep- total bullshit... some CHers only get night hits. Lithium and verap can be prevents for CH. Indomethacin is very effective for CPH (chronic paroxysmal hemicrania). Be careful, both verap and indo mess with the lithium levels in your blood. I take the lith at bedtime, so I don't get fuzzy. Keep pushin...

Title: Re: Grrr ... 1-2-3- BANG
Post by Kevin_M on Dec 11^th, 2004, 10:40am

on 12/11/04 at 09:14:25, Sylvan wrote:

I've been getting hit only every 3-4 nights for the past week or so. Just when i start to feel good - the beast wakes me up at 1:30 am again.
Last night - Kip 7 - but only lasted about 35 minutes.

But i did get daytime HA's yesterday - 2 of them - not as severe as the night ones - but pretty bad never-the-less.

This seems similar to how my cycle starts again. First a morning hit, then a couple at night followed by a week later, the daytime hits, coinciding with a gradual increase in intensity, quickly.

Not having an abortive is out of the question. And it seems apparent the scripts for prevents:

Quote:

My meds are
verapamil 80 mg TID
monopril 10 mg (for high blood pressure)
and just added:
lithium carbonate 300 mg
indomethacin 25 mg

seem like a half dozen of one and not enough of the other. I'd keep a log for the neuro to convince him of the gradual worsening and frequency of the attacks and the fact that the attacks need to be dealt with for the pain, maintainance of sleep and the lack of security of being able to keep your job with daytime hits and no sleep. I wonder what he would prescribe himself if this were his affliction and he needed to attend a full load of patients at work everyday.

Kevin M

Title: Re: Grrr ... 1-2-3- BANG
Post by Sylvan on Dec 11^th, 2004, 10:45am

I thought it was BS. And i printed out a bunch of stuff to take him next week to support that.

As for the drug interactions - I have not taken any of the indomethacin - yet. He said i could take it before bedtime - but to hold off for a bit - until i see what the lithium does.

I am only taking the lithium at night - and only 300 mg (damn - that sounds like a lot though)

Thanks :D

Title: Re: Grrr ... 1-2-3- BANG
Post by toolong on Dec 11^th, 2004, 11:26am

Don't know how to copy and paste,but I do agree with don that a doctors duty is to stop pain.Seems like most just want to push the shit that will get them their free vacations with their spouses.I've tried everything from asprin to bat shit.Had side effects from puking my guts out to a limp noodle.The only thing that has helped me is 02.Good luck with the meds.They do help some lucky ones. ;;DDavid

Title: Re: Grrr ... 1-2-3- BANG
Post by BobG on Dec 11^th, 2004, 12:02pm

on 12/09/04 at 16:17:43, Sylvan wrote:

Neuro said that my headaches may or may not be clusters. They sure sound like clusters to me, but I am not a doctor. He said that everything was consistant with clusters except that they are only happening at night with any severity. He doesn't know what he is talking about. 98% of my attacks have been at night. The most severe ones are at night. For me daytime attacks are rare. He wants to rule out somehting called hypnic headaches which are similar but only occur at night first.

Hypnic HA's however are mostly (80%) bi-lateral and often have associated nausea. Mine are unilateral and do not include nasuea. Hypnic also rarely occur in people under 55. I wonder why he wants to rule out hypnic headaches when the signs point to clusters.

If the lithium does not stop them in 10 days - we're going to get an MRI and consider that they may in fact be clusters - just not happening as often as is normal. Sorry to say this but I don't think your doctor knows what cluster headaches are. He said he has many cluster patients Many cluster patients? That is bullcrap. No doctors have many cluster patients. and less than 20% are women I think your doctor read a throw-away pamphlet in a drug store 25 years ago and thinks he’s an expert now. - also 100% have both nocturnal and daytime hits. Again, just bullcrap.

My meds are

verapamil 80 mg TID 80mg a day? X3 a day? Even at X3 a day it is a low dose of verapmil. Most people are up at the 400-500mg level and some at 800mg a day.

The Dr that dx'd CH was my GP. She referred me to the neuro for further treatment. Good! Because your GP sure doesn't know anything about cluster headaches! He has not yet officaily dx clusters.

Title: Re: Grrr ... 1-2-3- BANG
Post by Sylvan on Dec 11^th, 2004, 2:03pm

Quote:

I wonder why he wants to rule out hypnic headaches when the signs point to clusters.

My guess? Probably because he finshed med school the year i was born (1963) and women *just don't get CH*

Quote:

I think your doctor read a throw-away pamphlet in a drug store 25 years ago and thinks he’s an expert now

That actually wouldn't surprise me. The guy was literally reading the description of hypnic HA's to me out of a text book. The name on the spine was Wolfe. As he was reciting - i asked him stuff like - "hey - that says bi-lateral - I told you unilateral. And what about autonomic symptoms? Like Eyelid edema, nasal congestion, eye lacrimentation? He kept saying Woman, no daytime hits.

Grrr .... If he doesn't start treating me for what i have by my next appt - I'm going to be changing drs.

Thanks :)

Title: Re: Grrr ... 1-2-3- BANG
Post by Jonny on Dec 11^th, 2004, 3:18pm

Never, Never, Never tell a doc that the HA's have stopped!!!!!

Make him/her think your chronic (Even if your not) so you will keep getting refills. this allows you to stock pile for when you need them.

This way you can fuck the insurance company just like they are fucking you!

No matter what the med it does not go out of date.....thats bullshit!

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

PS....ask the doc for samples ;;D

Title: Re: Grrr ... 1-2-3- BANG
Post by Sylvan on Dec 11^th, 2004, 4:15pm

on 12/11/04 at 15:18:52, Jonny wrote:

Wow! I never thought of that! Great idea!

Um - does that mean i need to keep 2 HA logs - 1 for real and 1 to show the doc?

OMG - i don't think i've ever lied to a dr before - this is gonna take some psyching up. It does make a lot of sense though.

Thanks ;;D

Title: Re: Grrr ... 1-2-3- BANG
Post by BobG on Dec 11^th, 2004, 5:35pm

on 12/11/04 at 15:18:52, Jonny wrote:

Jonny's right. Stockpile. What can it cost, $10 deductable each month?
And, if you decide to reduce the stockpile there are ways to "dispose" of the meds.

Title: Re: Grrr ... 1-2-3- BANG
Post by don on Dec 11^th, 2004, 6:16pm

Quote:

i don't think i've ever lied to a dr before

You shouldn't have to. If thats what you need to do then change Docs.

My Doc knows I'm episodic and he encourages me to stockpile. Screw the insurance company.

Title: Re: Grrr ... 1-2-3- BANG
Post by Kevin_M on Dec 11^th, 2004, 6:48pm

Sometimes a really "good" doc can be hard to find. I have two "ok" docs but... My gp is very liberal with the trex script but could make no sense out of me wanting verap, and laughed at the use of oxygen.
Soooo... I went the headache institute and she was quick to prescribe oxygen and verap very readily. Only I had to "adjust" the specifications on the O2 script by talking with the oxygen supplier, who... had a contact RN that happened to be familiar with clusters and gave me the setup I needed. Oh, the headache institute doc also wrote me a script for trex too. Really stupid though since I had listed my scripts and TOLD her I already am being written a script for trex. Anyway, the script she writes was for six imitrex a month. I mentioned, this is all you think will help me keep my job so I can maintain (screw) my insurance? I handed the script back to her and told her to save it for one of her migraine patients. She prescribes all the O2 I need at home, but where I spend 40 some hours a week, six trex?
I've gotten what I need from having two just "ok" docs. Neither alone is a good cluster doc, but where there's a will, there's a way.

Kevin M

Title: Re: Grrr ... 1-2-3- BANG
Post by marlin on Dec 12^th, 2004, 12:12am

My experience with Drs is there are never 2 the same. Some are super sensitive to the generous phamra rep's suggestions. Others are afraid to prescribe expensive meds because they fear being blacklisted by ins companies. Some just plain don't give a shit about influences and treat patients as if they were related to them. Those are the ones you need to look for. Helps if they seem to know a lot about CHs. I still think they like to work on patients with easy to identify real physical conditions like tumors, brain damage from trauma, concussions.... I think some believe HAs not just affect your head but are in your head. That's a mountain you really don't want to climb. Get some trex injectibles (if you're a candidate) and stockpile.