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        Cluster Headache Help and Support >> Cluster Headache Specific >> Can CH Cause Brain Damage?
        
(Message started by: Cynthia on May 22^nd, 2008, 12:38am)

Title: Can CH Cause Brain Damage?
Post by Cynthia on May 22^nd, 2008, 12:38am

Has anyone heard of CH causing brain damage? I have read a couple of studies showing that migraines can cause leisons in/on the brain which can lead to problems. But I haven't found anything relating it to CH.

I was wondering because I had a CH cycle that lasted about 2 weeks recently, and I have noticed some changes in me. I am a bit more forgetful, sluggish, out-of-it, and have been having odd feelings (sort of like the auras I get with my partial seizures, but a bit different). Its hard to describe. Its just been some stuff that isn't my usual self.

Has anyone had any experiences similar to this? Or has anyone heard of anything that is related to it? Thanks for any info!

Title: Re: Can CH Cause Brain Damage?
Post by AussieBrian on May 22^nd, 2008, 12:53am

None that we're really aware of, Cynthia, though we know what can do to your mind if you let it. The emotional toll can be devastating and can certainly lead to all sorts of lousy feelings.

I know I become quite sluggish and forgetful as cycles progress but I reckon most of that is through lack of sleep.

Title: Re: Can CH Cause Brain Damage?
Post by Annette on May 22^nd, 2008, 4:52am

If you consider the abnormality found in the hypothalamus of some CHers and how common head injury is related to CH, it maybe the other way round, ie some forms of brain damage may cause CH.

Forgetfullness and problems with cognition are more likely to be caused by/related to neurotransmitter imbalances in the brain during a cluster cycle than anatomical damages.

Title: Re: Can CH Cause Brain Damage?
Post by catherinelane on May 22^nd, 2008, 5:23am

are you on the tapering dose of steroids?
i found that i got extremley forgetful while using that route of medication, even forgetting how to pronounce certain words!

Title: Re: Can CH Cause Brain Damage?
Post by Brew on May 22^nd, 2008, 6:09am

Absolzp[3 w;e. q098r dj pwie/'d sjdpale duwle ieuuusel as send te2s d ss speof.!

Title: Re: Can CH Cause Brain Damage?
Post by BarbaraD on May 22^nd, 2008, 7:21am

Cynthia,

don't worry about something you can't change. We're all going thru some tremendous amounts of pain. And yes it's going to effect our thinking somewhat.We take meds that effect our thinking...

I've learned over the years to just write a lot of notes and try to remember where I put them (post it notes work best :) ).

I have auras also, but just take them with a grain of salt (or blame them on the migraines I have occasionally).

What I'm getting at is -- why worry about something when you can't do anything about it? I just "assume" that we're all "brilliant" and until someone proves different I'll just hold on to that assumption. After all we DO have more gray matter than most people so therefore we MUST be brilliant - right? Einstein couldn't remember his phone number (he didn't bother to remember things he could look up - so why should I?).

Now don't you feel better now that you have my opinion? :D

Hugs BD

Title: Re: Can CH Cause Brain Damage?
Post by Redd on May 22^nd, 2008, 8:30am

I have only one other word of advice, and that is...

If you are experiencing symptoms that are different or odd "for you"...please see your doctor. We never know when something more sinister can pop up. Think Kennedy, and his brain cancer. He'd had a clean brain scan just 6 months ago.

Better to check it out.

Title: Re: Can CH Cause Brain Damage?
Post by Charlotte on May 22^nd, 2008, 9:02am

I'm with Redd. Please call or email your doc or advice nurse, if you have one. I do get wierd things, and have multiple types of headaches. It can be like peeling layers of an onion to get to the cause of different symptoms.

Sometimes it is part of your headache, sometimes something else. We had a sweet lady called Rapunzel who had several strokes.

I'd feel better if you bounced it off a medical professional.

We are here for moral support, but most of us are not docs.

Charlotte

Title: Re: Can CH Cause Brain Damage?
Post by Jean on May 22^nd, 2008, 9:35am

Hi,

I notice during a cycle I am very forgetful, have trouble concentrating and even have trouble carrying on a normal conversation. I think my appearance even changes. CH effects my whole being while in cycle. All seems to go back to normal after my cycle ends but it does take some time.

Jeannie

Title: Re: Can CH Cause Brain Damage?
Post by seasonalboomer on May 22^nd, 2008, 10:17am

on 05/22/08 at 09:35:02, Jean wrote:

Felt many of the same things during some cycles.

Scott

Title: Re: Can CH Cause Brain Damage?
Post by thomas on May 22^nd, 2008, 1:52pm

I ain't as smart as I once was.

Title: Re: Can CH Cause Brain Damage?
Post by Brew on May 22^nd, 2008, 1:58pm

on 05/22/08 at 13:52:46, thomas wrote:

I ain't as smart as I once was.

I'll trade smart for wise any day.

Title: Re: Can CH Cause Brain Damage?
Post by Cynthia on May 22^nd, 2008, 4:49pm

Thanks for the replies everyone.

Annette: Maybe it is from the neurotransmitter imbalance. I had not thought of that yet.

Catherine: No, I wasn't on any steroids. I didn't know they could work until I was almost through the cycle, so I didn't know it was an option. I probably wouldn't have wanted them anyway, because they make me feel bad-sweating, feel hot, increased appetite, moody.

Barbara: Sorry, I can't just accept this change in me. I am still taking college courses (quite difficult ones at that) and plan on medical school in a couple of years. A mess up in my brain that makes it harder for me to learn is a detrimental blow for me. I want to worry about it because I want to know what it is so that I can stop any progression of the problem or reverse it if possible. I know you're trying to offer support though-so thanks for that.

Jean, seasonalbloomer: Thanks, that does make me feel a bit better that it doesn't seem permanent and that it isn't just me.

Redd, charlotte: I work at a doctors office, and I did ask him about it today. He said that it might have been due to the sleep problems I had. I mentioned the auras and everything, but he wasn't very sure if it all was from the CH or not. He recommended that if I keep having problems that I might want to talk to my neuro. I have an appointment with the neuro soon anyway for the seizures, so maybe he might know whats up.

Title: Re: Can CH Cause Brain Damage?
Post by Balanchine on May 22^nd, 2008, 6:41pm

I don't know about smart or wise.... but since I started on Topomax about 10 days ago I'm convinced my IQ has dropped 20 points (and when you start at 80....). Give you an example, yesterday I was trying to give a clerk 20 cents in change and it was a challenge. Jeesh. I used to be able to handle that in less than 5 minutes!

Title: Re: Can CH Cause Brain Damage?
Post by Cynthia on May 22^nd, 2008, 7:17pm

on 05/22/08 at 18:41:39, Balanchine wrote:

I have heard of that with Topamax. Its why some people have nicknamed it "dopamax" and "stupamax". I used to take it for seizures and I didn't notice anything like that. My Mom takes it for migraines and she noticed it in the first few weeks but it seemed to go away after a while.

Did they slowly titrate the dose up or just throw you into a moderate/high dose? It will almost definately cause side effects if it isn't introduced slowly. When I was on it I was started out a 25mg for a few days then went up to 50, and so on. I had to go off of it for a little while and when starting it again I just jumped back into the regular dose thinking my body would recognize it....I was wrong! It knocked me out and I slept all day. I had to reintroduce it slowly again.

Title: Re: Can CH Cause Brain Damage?
Post by Balanchine on May 22^nd, 2008, 7:35pm

Cynthia, yes, my neurologist started me on 25 mg twice a day for 4 days, then upped it to 50 twice a day for 10 days. I'm in the midst of that at present. But I noticed the effect almost immediately. As I wrote somewhere in another post, I'm feeling sleepy, stupid, dopey and drowsy... like half the seven dwarves. I certainly hope I get accustomed to it like your mother!

Thanks.
David

Title: Re: Can CH Cause Brain Damage?
Post by Lebowski on May 24^th, 2008, 5:30am

If they do not cause brain damage, I think smashing my head with my fists will during an attack!

Title: Re: Can CH Cause Brain Damage?
Post by kissmyglass on May 24^th, 2008, 11:12am

Ummm....What was the question? :)

Title: Re: Can CH Cause Brain Damage?
Post by midwestbeth on May 24^th, 2008, 1:34pm

on 05/22/08 at 09:35:02, Jean wrote:

I completely agree with what Jean said.

Beth

Title: Re: Can CH Cause Brain Damage?
Post by Trooper on May 25^th, 2008, 11:11am

I notice a change in my thinking and attitude as well as the forgetfulness, etc. from the very first hint of a shadow. In a way it kinda lets me know when I am going into cycle. I have had a few rare occasions in the past where I have also felt the aura sensation you speak of. It is a very creepy feeling indeed!

If you are having this quite often I would discuss this with your doc. ASAP.

Title: Re: Can CH Cause Brain Damage?
Post by Cynthia on May 25^th, 2008, 3:25pm

on 05/25/08 at 11:11:36, Trooper wrote:

Thanks for the input, it makes me feel a bit more reasured that its nothing very serious. I think it may be starting to go away a bit. I did ask my doc, he said it might have been from the sleep problems I had during the worst of the clusters. He said if they come back or it gets worse that I should either go on a preventative or see my neuro. I went ahead and went on the preventative for the time being, I was still having some of the problems I was mentioning, along with a CH that would pop up every few days and a lingering headache that was just nagging. I probably started the preventative a bit to late, but I figured it was worth a shot at atleast trying.