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        New Message Board Archives >> Jan-Mar 2003 >> CLusters with Migraine and Constant Headache
        
(Message started by: cluster0557 on Dec 16^th, 2002, 4:55pm)

Title: CLusters with Migraine and Constant Headache
Post by cluster0557 on Dec 16^th, 2002, 4:55pm

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.

Title: Re: CLusters with Migraine and Constant Headache
Post by jonny on Dec 16^th, 2002, 5:08pm

Have you tried a combo of Verap and Lithium?

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

Title: Re: CLusters with Migraine and Constant Headache
Post by DougL on Dec 16^th, 2002, 5:15pm

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

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Dec 16^th, 2002, 5:16pm

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.

Title: Re: CLusters with Migraine and Constant Headache
Post by jonny on Dec 16^th, 2002, 5:21pm

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.

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Dec 16^th, 2002, 5:30pm

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

Title: Re: CLusters with Migraine and Constant Headache
Post by Drk^Angel on Dec 16^th, 2002, 5:58pm

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

Title: Re: CLusters with Migraine and Constant Headache
Post by Slammy on Dec 16^th, 2002, 5:58pm

on 12/16/02 at 17:21:29, 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.

Dude, you onlythink you have no side effects... ;D

Slammy 8)

Title: Re: CLusters with Migraine and Constant Headache
Post by jonny on Dec 16^th, 2002, 6:07pm

on 12/16/02 at 17:58:36, Slammy wrote:

Dude, you onlythink you have no side effects... ;D
Slammy 8)

You could be on to something, Bro....Perhaps I need "Intervention"....LMMFAO ;D

......................jonny :D

Title: Re: CLusters with Migraine and Constant Headache
Post by firebrix on Dec 16^th, 2002, 6:11pm

Good Luck and Welcome cluster0557.
All the best for Wednesday.
firebrix

Title: Re: CLusters with Migraine and Constant Headache
Post by RevDeFord on Dec 16^th, 2002, 7:53pm

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

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Dec 16^th, 2002, 9:16pm

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

Title: Re: CLusters with Migraine and Constant Headache
Post by SommelierCH on Dec 16^th, 2002, 9:58pm

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.

Quote:

now I can drink again.

Quote:

drink again.

Quote:

drink

:'( :'( :'(

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? :o :o Don’t let this post float down and fade away, this is important. :'( :'( :'(

David J.

Title: Re: CLusters with Migraine and Constant Headache
Post by SommelierCH on Dec 16^th, 2002, 10:19pm

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.

Title: Re: CLusters with Migraine and Constant Headache
Post by Ann on Dec 17^th, 2002, 9:32am

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

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Dec 17^th, 2002, 12:34pm

on 12/17/02 at 09:32:00, Ann wrote:

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

Title: Re: CLusters with Migraine and Constant Headache
Post by echo on Dec 17^th, 2002, 1:07pm

on 12/16/02 at 18:07:38, jonny wrote:

You could be on to something, Bro....Perhaps I need "Intervention"....LMMFAO ;D

......................jonny :D

Just go take a swim in lake YOU jonny --everything will be much better then.

Title: Re: CLusters with Migraine and Constant Headache
Post by Ann on Dec 17^th, 2002, 7:58pm

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

Title: Re: CLusters with Migraine and Constant Headache
Post by K bogo on Dec 17^th, 2002, 9:36pm

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

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Dec 17^th, 2002, 11:24pm

on 12/17/02 at 21:36:17, K bogo wrote:

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.

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Dec 18^th, 2002, 10:27pm

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.

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Jan 3^rd, 2003, 3:18pm

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

Title: Re: CLusters with Migraine and Constant Headache
Post by domm on Jan 3^rd, 2003, 6:23pm

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

Title: Re: CLusters with Migraine and Constant Headache
Post by Karla on Jan 3^rd, 2003, 8:48pm

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.

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Jan 3^rd, 2003, 9:20pm

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

Title: Re: CLusters with Migraine and Constant Headache
Post by Brassbear on Jan 4^th, 2003, 6:08am

0557, Can't tell you much about meds and treatments for CH yet. I was just diagnosed last month. So far the only med I have is Imitrex and it does help me.

I also have migraines, I've been dealing with those since 1970. So far, I've not been hit with them at the same time as the CH. Thankfully.

Listen to these people, they know what they are talking about and they have been tremendously helpful to me!

Welcome aboard.

Hey jonny... no side effects...effects...effects? ;D

Michael

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Jan 13^th, 2003, 10:07am

It has been a few days now since I fired my last Neorologist.

In an effort to control my CH he prescribed 75mg of Indocin 4 times daily. What a nighmare. 4 x the normal doseage Either I get beat to death by the cluster or get my gastro system torn apart by the Indocin. Great therapy.

I decided to seek help from either the Diamond Headache Clinic or the Robbins Headache Clinic both of which are within 50 mile of where I live. I'll know more in a couple of days which one I can get into the soonest.

My Message to all is don't trust your doc for everthing. Research using this and many other sources of info to become more informed and less dependent on the let's try this attitude to see if it by chance works.

Title: Re: CLusters with Migraine and Constant Headache
Post by jmorgan52 on Jan 13^th, 2003, 2:22pm

I agree on not trusting the doctors, even the so called headache specialists. Most want you out of the office after the alloted 10 minutes on some new or different drug therapy to stop you whining. Most have no idea of what the problem is. To them is is after all "just a headache". Lose weight, give up smoking, give up booze, de-stress, etc, etc is the best advice they ever give.

I suffer from all types of headaches, mostly when I am in cluster, I will get migraines, Ch and tension headaches one after the other. Imigran seems to fix them all with about 12-24 hours relief between doses when in cluster.

I tend to be prone to headaches all year round, but ususally an aspirin will fix the "normal" ones.

I think I broke my last cycle in March-May with a detoxification diet. I have been more or less headache free ever since. I have just about given up wheat products since then and feel they may have been contributing to my condition.

J

Title: Re: CLusters with Migraine and Constant Headache
Post by bob900 on Jan 14^th, 2003, 9:23pm

Hi My Name is Bob and I also suffer from Cluster Headaches and Migrainges. I can't find any Dr. who has any ideas besides anti-depressants which makes Mine worst :'( I think if they suffered fromthe same problems as We do they would'nt think that were looking for drugs for thr hell of it! I bang My Head on the wall to try to knock myself out it really SUCKS!!! Do You have any luck with any Meds. besides anti-depressants.Thank You for Your Time Bob.

Title: Re: CLusters with Migraine and Constant Headache
Post by bob900 on Jan 14^th, 2003, 9:42pm

I hear U it's the pits! You have to experience them Yourself too uderstand Dr's. SUCK when it comes to treating this problem if they had them they would not subscribe these Drugs that make U a Zombie and Your just a Zombie now in hell. Bob.

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Jan 14^th, 2003, 11:42pm

What is helping me now as preventative is Verapamil 240 mg SR three times daily.

I also went on 75mg to 100mg of Pamelor every night.
Pamelor is also antideprresant but is only one that has not cause me to go into zombie mode.

It has not killed the devil but has gotten me out of slam my head mode most of the time.

Imitrex Injections help in slam head mode for most of my attacks but tonight it did not dent it.

I have a shot called Numbital that knocks me out in this case. Getting one ready now.

I am breaking down and going to Diamond Head Clinic in Chicago in two weeks. Supposedly one of the best places to get help.

I'll update once I see them.

Good luck

Title: Re: CLusters with Migraine and Constant Headache
Post by fubar on Jan 14^th, 2003, 11:50pm

Numbitol... doesn't that come in .45 and .44? I hear those are one-use-only though, with terrible side effects.

Title: Re: CLusters with Migraine and Constant Headache
Post by cluster0557 on Jan 15^th, 2003, 12:31am

oops wrong drug name. ::)They are actually 20mg Nubain IM0.

Beats the hell out of going to the er for demerol shot. ;)

It knocks down the pain and does not have rebound of stronger demerol and other stuff.

I Only use when Imitrex flops.

Can't drive or work for 4 hours once a shot is taken but can't do either anyway when CH in full cycle.

Title: Re: CLusters with Migraine and Constant Headache
Post by jmorgan52 on Jan 15^th, 2003, 1:19am

Imigan (Imitrex in USA) Injection works for me EVERY TIME. Are you doing the shot correctly? I always shoot into my right leg on the top right hand side just below the bum and get relief in about 10 minutes without fail.

As for anti-depressants I reckon steer well away from them. Rather get some support from family freinds or here when you get desperate. Any doctor who prescribes them for ch needs fuckin up!

Pain killers are also a waste of time. They make you even worse with the rebound headaches on top of the ch and migraine.

Try and totally radically change you diet when in cluster. Eat very light, lots of fruit and veg, drink stacks of water, steer away from booze, fags, coffee (I know some of you think coffee helps), sweets and wheat products. If you begin to lose weight it is a good sign you are doing the right thing and getting rid of headache causing toxins. I believe this helps to break the cluster cycle. Take it or leave it, but it worked for me last time.

J