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Cynthia

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Can CH Cause Brain Damage?
May 22^nd, 2008 at 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!

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Can CH Cause Brain Damage? Reply #1 - May 22^nd, 2008 at 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.
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Annette

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Re: Can CH Cause Brain Damage?
Reply #2 - May 22^nd, 2008 at 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.

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catherinelane CH.com Junior Offline brain is out please leave a message after the tone Posts: 41 x0\|ogmore valleys\|United_Kingdom\|\|0\|0\| Gender:	Re: Can CH Cause Brain Damage? Reply #3 - May 22^nd, 2008 at 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!
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Brew Ex Member	Re: Can CH Cause Brain Damage? Reply #4 - May 22^nd, 2008 at 6:09am Absolzp[3 w;e. q098r dj pwie/'d sjdpale duwle ieuuusel as send te2s d ss speof.!
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BarbaraD

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Re: Can CH Cause Brain Damage?
Reply #5 - May 22^nd, 2008 at 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? Cheesy

Hugs BD

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Redd CH.com Sponsor Offline Posts: 8457 Stevens Point USA Wisconsin Gender:	Re: Can CH Cause Brain Damage? Reply #6 - May 22^nd, 2008 at 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.
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Charlotte

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Re: Can CH Cause Brain Damage?
Reply #7 - May 22^nd, 2008 at 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

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Can CH Cause Brain Damage? Reply #8 - May 22^nd, 2008 at 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
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seasonalboomer

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Re: Can CH Cause Brain Damage?
Reply #9 - May 22^nd, 2008 at 10:17am

Quote:

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

Felt many of the same things during some cycles.

Scott

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Scott

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Agostino Leyre CH.com Sponsor Offline "Hit like a phillips head into my brain." Posts: 3803 Madison WI USA Gender:	Re: Can CH Cause Brain Damage? Reply #10 - May 22^nd, 2008 at 1:52pm I ain't as smart as I once was.
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Brew Ex Member	Re: Can CH Cause Brain Damage? Reply #11 - May 22^nd, 2008 at 1:58pm thomas wrote on May 22^nd, 2008 at 1:52pm: I ain't as smart as I once was. I'll trade smart for wise any day.
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Cynthia

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Re: Can CH Cause Brain Damage?
Reply #12 - May 22^nd, 2008 at 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.

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Balanchine

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Re: Can CH Cause Brain Damage?
Reply #13 - May 22^nd, 2008 at 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!

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Cynthia

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Re: Can CH Cause Brain Damage?
Reply #14 - May 22^nd, 2008 at 7:17pm

Balanchine wrote on May 22^nd, 2008 at 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!

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.

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Balanchine

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Re: Can CH Cause Brain Damage?
Reply #15 - May 22^nd, 2008 at 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

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Lebowski CH.com Junior Offline The Dude Abides! Posts: 55 x0\|Ithaca\|USA\|\|0\|0\|NY,New_York Gender:	Re: Can CH Cause Brain Damage? Reply #16 - May 24^th, 2008 at 5:30am If they do not cause brain damage, I think smashing my head with my fists will during an attack!
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kissmyglass CH.com Alumnus Offline Don't Mix Triptans Posts: 1408 Columbus, OH Gender:	Re: Can CH Cause Brain Damage? Reply #17 - May 24^th, 2008 at 11:12am Ummm....What was the question?
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midwestbeth

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Re: Can CH Cause Brain Damage?
Reply #18 - May 24^th, 2008 at 1:34pm

Quote:

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

I completely agree with what Jean said.

Beth

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mezza

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Re: Can CH Cause Brain Damage?
Reply #19 - May 27^th, 2008 at 10:01pm

In this cycle- i have forgotten just about everything that kids have brought home that needed turned in ( money for activities, report cards signed, sign up for snacks etc), I forget to return calls at work- I had to have my secretary cut off voice mail for me so that i could only get handwritten messages ( i'd forget to check voicemail) - I also have been losing notes that i write myself to remember!!! Shocked

.... and probably the ultimate horror- twice i realized that i wore the same outfit to work in the same week!

But..... as much shame as i am causing , i am glad i am pain free

kelly

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BarbaraD

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Re: Can CH Cause Brain Damage?
Reply #20 - May 28^th, 2008 at 3:32pm

RE: Topamax -- try taking the whole dose at night before bedtime. I've been doing that since 99 and don't experience the side effects that most of you do. My neuro has started prescribing it that way because of no side effects for me. I've been up to 400mg at times with no side effects (well, except a little short term memory loss and I blamed that on age - heck I've never had a great memory even when I was young). But I never had the dopey stuff and all that.

And I do detailed work (am an accountant) and have to have a little "thinking" power. Never had a problem with it. It's been my miracle drug.

Hugs BD

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Em

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Re: Can CH Cause Brain Damage?
Reply #21 - May 28^th, 2008 at 3:52pm

Quote:

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.

I'm on this bandwagon too. Forgetful, can't get my words out, stuttering, dialling a number on the phone and forgetting who I was calling, cooking ribs in the oven for 16 hours on Sunday Embarrassed

(I just forgot completely that I was even cooking them!!). Like you Jeannie, out of cycle, I'm not like that at all, but in it I'm useless.

My colleagues have made a special post-it block for me - lots of small pieces of paper holepunched and tied on a string. They make me wear it round my neck and write stuff down!! Whatever works though, right?

Em

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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: Can CH Cause Brain Damage? Reply #22 - May 28^th, 2008 at 6:03pm Can CH Cause Brain Damage? No proof it does, but it turns me dumber than a box of rocks during a high cycle. I recover, but never quite to the level I was before all this started. YMMV Bill
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