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Topic: CLusters with Migraine and Constant Headache (Read 1236 times) |
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cluster0557
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Migraines are bad. Clusters are Hell, I have both
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CLusters with Migraine and Constant Headache
« on: Dec 16th, 2002, 4:55pm » |
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Does anyone else out there suffer from Clusters compounded by migraine.
I have had continual headache, compounded by migraines triggered by light (fluorescents) further compounded by daily cluster attacks.
This has been going on for 6+ months now. I used to just have episodic clusters in February and March but now have been in this wacko phase since last March.
I have been on most known Migraine/Cluster Drugs as prevents with relief from the 10 level cluster (now just 7-8 on kip) but I have had them almost every day for 10 months.
I am now on Indomaicin, Verapamil, and Baclofen. I refuse to take Nardil, Topomax and other anti depressants because of side affects they have had with me.
I no longer have REM cycle symptom (thank god) but now wake up at 7 in morning with either a migraine for the day or a cluster banging away.
Am I alone with these symptoms ?
Any Ideas.
I am on fifth Neuro now.
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Pain is Inevitable, Suffering is Optional
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Jim
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jonny
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Re: CLusters with Migraine and Constant Headache
« Reply #1 on: Dec 16th, 2002, 5:08pm » |
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Have you tried a combo of Verap and Lithium?
...................jonny
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DougL
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Re: CLusters with Migraine and Constant Headache
« Reply #2 on: Dec 16th, 2002, 5:15pm » |
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This cycle I did get a few Migrains. Cluster, Migraine, then Cluster, Cluster.
I also seem for the past two years to not be bothered too much with being awakened at night.
My doc has had me on lithium 300mg 2x's day and verap 240 2x's day.
I'm now on the same dose of lithium but up to verap 240 3x's a day.
That seems to be the ticket!
I've had a few break threw and now I can drink again.
Yea! ;D Just in time for the holidays! ;D
Good Luck!
DougL
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cluster0557
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Migraines are bad. Clusters are Hell, I have both
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Re: CLusters with Migraine and Constant Headache
« Reply #3 on: Dec 16th, 2002, 5:16pm » |
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Have been on Verapamil for 2 years now. Tried Lithium with it and was walking zombie. Could not function with Lithium.
It did help the cluster but side affects where terrible.
Thanks
Jim A.
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jonny
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Re: CLusters with Migraine and Constant Headache
« Reply #4 on: Dec 16th, 2002, 5:21pm » |
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Sorry to hear about the sideffects, I have been on 480 mgs of Verap and 600 mgs of Lithium everyday for well over a decade and it has put a big dent in my chronic CH, with little or no sideffects.
Sorry to hear it didnt work for you.
......................jonny 
PS, stick around there alot of people here that get both CH and Meegraines.
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cluster0557
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Migraines are bad. Clusters are Hell, I have both
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Re: CLusters with Migraine and Constant Headache
« Reply #5 on: Dec 16th, 2002, 5:30pm » |
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I am on Verapmil 240 mg 2 x Daily. I will see if my Blood Pressure can go down more with another 120mg or 240mg a day.
The Verapamil has reduced the CLuster severity Not many 10's any more but life still sucks with migraine clusters ruling my awake hours now.
I see Neuro Wednesday. He is rated highly so we will see waht we can see.
As always a little rain must fall into life. Sometimes I get a hurricane though.
Bad one starting so till later, thanks to all fo responses.
Time for Imitrex Sleep.
Jim A
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Azrael
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Re: CLusters with Migraine and Constant Headache
« Reply #6 on: Dec 16th, 2002, 5:58pm » |
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Welcome to the board! Sorry that the beast is wrapping rusty barbed wire around your cranium and slowly tightening it until your head explodes. Good luck!
PFDAN..................................... Drk^Angel
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Slammy
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Re: CLusters with Migraine and Constant Headache
« Reply #7 on: Dec 16th, 2002, 5:58pm » |
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on Dec 16th, 2002, 5:21pm, jonny wrote:, I have been on 480 mgs of Verap and 600 mgs of Lithium everyday for well over a decade and it has put a big dent in my chronic CH, with little or no sideffects.
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Dude, you onlythink you have no side effects... ;D
Slammy 
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jonny
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Re: CLusters with Migraine and Constant Headache
« Reply #8 on: Dec 16th, 2002, 6:07pm » |
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on Dec 16th, 2002, 5:58pm, Slammy wrote:
Dude, you onlythink you have no side effects... ;D
Slammy
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You could be on to something, Bro....Perhaps I need "Intervention"....LMMFAO ;D
......................jonny 
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firebrix
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Re: CLusters with Migraine and Constant Headache
« Reply #9 on: Dec 16th, 2002, 6:11pm » |
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Good Luck and Welcome cluster0557.
All the best for Wednesday.
firebrix
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RevDeFord
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Re: CLusters with Migraine and Constant Headache
« Reply #10 on: Dec 16th, 2002, 7:53pm » |
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I've seen Jonny for over a year on here now and it all seems to be coming together for me now. SIDE EFFECTS! I knew there had to be a logical explanation! ;D ;D
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cluster0557
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Re: CLusters with Migraine and Constant Headache
« Reply #11 on: Dec 16th, 2002, 9:16pm » |
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Thanks for all the support and humor to boot. Lithium worked but the side effect was zombie city.
Could not drive on it. Tried and got pulled over. Imagine the cops surprise when he found no alchohol.
The cluster __stard is back but not winning yet. I have good doc who is into pain management but I would luv to get back to 5 days without headache.
I would then suspect I died and went to heaven.
Maybe I am in hell ! Oh no is it true? After today's series who can tell!
All take care, thanks for support.
Jim
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SommelierCH
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Re: CLusters with Migraine and Constant Headache
« Reply #12 on: Dec 16th, 2002, 9:58pm » |
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Jonny,
I love ya, bro…but you’re clogging up this very important thread here, talking about side effects and stuff. Let’s get back to the big essential point, this lithium/verap thing.
Quote:I'm now on the same dose of lithium but up to verap 240 3x's a day.
That seems to be the ticket!
I've had a few break threw and now I can drink again. |
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So, as far as I can tell, if I stop sucking on the terminals of the 9 volt alkaline and switch to sucking the terminals of the 9 volt lithium, three times a day, I can drink again?  Don’t let this post float down and fade away, this is important.
David J.
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SommelierCH
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Re: CLusters with Migraine and Constant Headache
« Reply #13 on: Dec 16th, 2002, 10:19pm » |
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cluster0557,
Sorry about that anxiety attack, 0557. You see, I get paid to drink. During cycle I can’t do my job. It’s not that I even LIKE to drink, it’s just what I have to do. I feel extremely guilty taking the owner’s money under false pretense.
Sorry about THAT anxiety attack too.
Welcome to our family. You are way out of my league as far as both pain and meds go, so I will simply say that, you have found the best damn group of people in the world here, they are SOO cool, that people try to fake extreme pain, just so that they can join in on the fun. Can you even imagine that? Give them as much info as you can and they will help you find the answers.
Good luck with the fifth Neuro,
David J.
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Ann
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Re: CLusters with Migraine and Constant Headache
« Reply #14 on: Dec 17th, 2002, 9:32am » |
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Dear Cluster,
The only medication I'm familiar with on your list is verapamil. Did you check to see if the other meds could cause rebound headaches. Perhaps the "migraines" are rebound headaches and not migraines at all? I feel that way when I stop taking my amerge at night. The next day I'm in pain....but no cluster.
I too am on the same combo pack as Jonny. 360 mgs of verapamil and 600 mg of lithium. Took a while to kick in, but I've been pain freefor a week and a half I don't want to say that too loud in case the beast is listening!
best of luck to you
hugs
Ann
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cluster0557
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Re: CLusters with Migraine and Constant Headache
« Reply #15 on: Dec 17th, 2002, 12:34pm » |
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on Dec 17th, 2002, 9:32am, Ann wrote:Dear Cluster,
The only medication I'm familiar with on your list is verapamil. Did you check to see if the other meds could cause rebound headaches. Perhaps the "migraines" are rebound headaches and not migraines at all? I feel that way when I stop taking my amerge at night. The next day I'm in pain....but no cluster.
I too am on the same combo pack as Jonny. 360 mgs of verapamil and 600 mg of lithium. Took a while to kick in, but I've been pain freefor a week and a half I don't want to say that too loud in case the beast is listening!
best of luck to you
hugs
Ann |
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Ann,
I have been on same meds as Jonny and other but my body won't tolerate the low blood pressure caused by the heavier dose of Verapamil and the lithium makes my head swim into zombie world. If I was not a tech keek then I gues it would be nice to live as a zombie but alas my mind needs to function. It made me zombie and left the cluster.
It isn't rebound since I only use Midrin for Migraine pain and Imitrex once every couple of days. Other days I grin and bear it if possible or go for long walk in cold air which reduces the pain a bit. On days where pain is level 7 or higher and I cannot use Imitrex then my Neuro prescribed Numbital as IM pain killer. Makes me sleep like a baby. To deal with REM cycle if not on Imitex or Numbital I take a 10mg valium per Neuro prescription. Also allows me to sleep for 6 hours or so.
Thanks for input
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Pain is Inevitable, Suffering is Optional
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Jim
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echo
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Re: CLusters with Migraine and Constant Headache
« Reply #16 on: Dec 17th, 2002, 1:07pm » |
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on Dec 16th, 2002, 6:07pm, jonny wrote:
You could be on to something, Bro....Perhaps I need "Intervention"....LMMFAO ;D
......................jonny
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Just go take a swim in lake YOU jonny --everything will be much better then.
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Ann
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Re: CLusters with Migraine and Constant Headache
« Reply #17 on: Dec 17th, 2002, 7:58pm » |
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Hey Cluster!
I know exactly what you mean about feeling out of it. I'm not a techie, but I teach math and science among other things. Last week I was so dizzy I didn't think I would last the week. The kids would ask me questions and I had to stop and think for a few minutes before answering. Good thing they know I'm medicated! LOL Thank God school lets out on Friday! eeeiiihhhaaa!!
So far the meds have been doing the trick. I don't mind the side effects as much as the pain...but that's me.
Good luck to ya!
Ann
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K bogo
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Re: CLusters with Migraine and Constant Headache
« Reply #18 on: Dec 17th, 2002, 9:36pm » |
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I went to the Neuro Friday regarding the same problem - clusters and migraines. We about have the clusters under control with Verapamil (mine are Oct - Jan). I broke down and am trying the Topomax (will be taking 200 mg) along with the Verapamil to see if I can't get a handle on the migraine part. As abortives, I use Imitrex injections, or Imitrex Tabs (50 or 100), or Fiorcet w/codiene (this is for migraine only-depends on how severe it is, does not work on my clusters).
Curious, do you know what type of migraine you have?
I will let you know how the Topomax/Verapamil combo is working.
Kim
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cluster0557
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Re: CLusters with Migraine and Constant Headache
« Reply #19 on: Dec 17th, 2002, 11:24pm » |
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on Dec 17th, 2002, 9:36pm, K bogo wrote: I went to the Neuro Friday regarding the same problem - clusters and migraines. We about have the clusters under control with Verapamil (mine are Oct - Jan). I broke down and am trying the Topomax (will be taking 200 mg) along with the Verapamil to see if I can't get a handle on the migraine part. As abortives, I use Imitrex injections, or Imitrex Tabs (50 or 100), or Fiorcet w/codiene (this is for migraine only-depends on how severe it is, does not work on my clusters).
Curious, do you know what type of migraine you have?
I will let you know how the Topomax/Verapamil combo is working.
Kim |
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As a Smart Alec I would say the migraines I have are ones that hurt. I heard the name once but I always butcher it but is something Continuum. I will ask tomorrow when I see my Neuro. Topomax also helped me but like Lithium and other Anti Depresants it caused me to get loopy and zombie ish like lithium.
The only antidepresant that worked was Nortriptylene. It's issue was one of mass weight gain due to affect on my metabolism. Win some loose some. Since I went off of Nortriptylene I can control and loose the weight but nothing has been as effective.
Migraine part is new this year. unfortunately it also turned me from episodic to chronic. I have been in this cycle since last December.
One thing I found was totall bs was all Neuros harping on smoking. I quit a year ago and since I quit my beast got bigger. Was only 1/2 to 1 pack a day lighter. Tempted to start again to see if head feels better but then lungs will suffer. Lungs vs head. hmmmm.
Life moves on. I grew up in sixties and seventies and avoided mind altering drugs. Now in my upper 40's and wow I get buzzed legally for headaches. Who would of thunk it.
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| « Last Edit: Dec 17th, 2002, 11:33pm by cluster0557 » |
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Pain is Inevitable, Suffering is Optional
Life is too short so push thru the _amn pain.
Jim
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cluster0557
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Re: CLusters with Migraine and Constant Headache
« Reply #20 on: Dec 18th, 2002, 10:27pm » |
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Saw Neuro Today. I now have plan A B and C.
Plan A kicks dose of verapamil to 240mg 3 x daily, Plan B Adds Welbutrin 75mg and plan C adds Indocin SR 75 mg.
As aid to avoid REM issues he put me on alternate for Valium. Less hangover affects. Also as prevent I am now on Pericatctin.
We shall see if it stops raining on my parade.
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Pain is Inevitable, Suffering is Optional
Life is too short so push thru the _amn pain.
Jim
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cluster0557
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Migraines are bad. Clusters are Hell, I have both
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Re: CLusters with Migraine and Constant Headache
« Reply #21 on: Jan 3rd, 2003, 3:18pm » |
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Well it has been a few weeks now since I saw my neuro.
THe dosage change for Verapamil did nothing but mess with my Blood Pressure and the Pericatctin did nothing.
Before I went to Wellbutrin he sent me write-up on side affects and no way am I trying to reduce Blood Pressure with Verapamil and raise it with Wellbutrin. How about the possibility of seizures. Geez.
I will try Indocin 75mg for a couple of weeks then it is time to find a new Neuro in the Chicago area. Does anybody have any suggestions. I am tired of by guess and by golly treatments. I need to get rid of these damn clusters.
It has been a year since I have had relief. This sucks.
TIA
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Pain is Inevitable, Suffering is Optional
Life is too short so push thru the _amn pain.
Jim
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domm
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Re: CLusters with Migraine and Constant Headache
« Reply #22 on: Jan 3rd, 2003, 6:23pm » |
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Cluster - the only time I had CH accompanied by constant headache was because I was taking too many meds and I was getting hit with rebounds.
I didn't see any post from you mentioning oxygen. Its an outstanding abortive when used properly. When I got the rebounds, I cut out everything except the O2 and waited until the Verap dosage took effect (I had to adjust the level up). Maybe you need to take a break from all that stuff and try a fresh approach.
Hang tough
domm
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Karla
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Re: CLusters with Migraine and Constant Headache
« Reply #23 on: Jan 3rd, 2003, 8:48pm » |
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I am a chronic clusterhead who also gets migraines. I have tried everything out there and had no luck finding a preventative to help either except imitrix and methadone and you don't want to do methadone if you absolutly don't have to. It is a last resort medicine. I usually get 4 migraines a month and 8 ch a day. The last two months I haven't had any ha's thanks to the methadone. I just wanted to let you know that you are not alone and to not give up hope. There are many medicines out there to try besides verapamil/lithium and antidepresents. There are many new abortives out on the market recently and many seizure meds can be used as preventatives and there are others out there. Keep up the search for the elusive pain remedy. However, I have found all come with a price of some kind of side effects. It is a tradeoff. Do you like to suffer with side effects or ch? Which is worse? Only you can answer that. good luck and wishing you many pfdan.
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Karla
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cluster0557
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Migraines are bad. Clusters are Hell, I have both
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Re: CLusters with Migraine and Constant Headache
« Reply #24 on: Jan 3rd, 2003, 9:20pm » |
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Thanks for the encouragement. It is sad. I am going on second year of daily headache / migraine and clusters all thrown is at me constantly.
I am looking for reccomendations for a new Neurologist who is not shooting in the dark.
I can deal with CH but need relief from constant non-CH portion of this ___ing headache. Went to Indocine tonight as prevent with the Verapamil. We shall see what we shall see.
Next week search is on for Neurologist someone who is experienced at dealing with the symptoms I have.
Nor more by guess by golly by george or however that saying goes. 
Thanks
for support
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Pain is Inevitable, Suffering is Optional
Life is too short so push thru the _amn pain.
Jim
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