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Author Topic: ...If I only had a brain...  (Read 4913 times)

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Offline MarcoPoz

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  • Posts: 396
...If I only had a brain...
« on: June 16, 2008, 02:47:29 PM »
At first they said--"yep, it's a T I A".  My quizzical look prompted them to further explain..."well, at least we think that's it...maybe an evolved migranous act".

That's what they said to me after 37 hours in the ER.  35 hours after losing my sight, the ability to think of correct words and form them with my mouth, and numbing of my right hand.  It all went back to normal 2 hours after the 'incident' and I spent the next 35 hours getting tested and waiting to get tested more.

Turns out that eventhough I have a 'normal' T-cell count, undectecable viral load, am in great physical shape (other than rehabbing a jacked up knee from a rock climbing fall) my brain is now doing nasty little 'stunts' on me.

They don't know if it's related to living with HIV in my brain for 16 years.  Having HIV meds flow into my brain chasing the HIV for 16 years, the odd outgrowth of normally debilitating migraines, OR the result of multiple concussions (4).

Either way it seems my brain has decided to--when it chooses to--constrict blood flow just for a flash--just so I can do my impression of the Pinball Wizard.  Splitting headache--or sometimes without any warning.

They also said that there is a strong likelihood that it will keep happening.

So bro's and sis's...anyone else dealing with a 'heady' subject like this?  If so, how do you cope?

-Marco

Offline bear60

  • Member
  • Posts: 4,104
Re: ...If I only had a brain...
« Reply #1 on: June 16, 2008, 02:57:23 PM »
I can only offer you my wishes for a resolution to this and give you a big..............((((((((((((HUG))))))))))
Poz Bear Type in Philadelphia

Offline redhotmuslbear

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  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: ...If I only had a brain...
« Reply #2 on: June 16, 2008, 03:49:01 PM »
Marco,
Last May I rushed my partner to the ER in Anchorage, Alaska, following a similar episode while on vacation there.  I knew the signs of possible stroke when he grabbed the back of his head in pain but couldn't scream, then lost the ability to speak or control one half of his body.  The all-Queer ER staff diagnosed it as a post-coital migraine following CT scans, x-rays, and a lumbar puncture;  however, our doc back here at home sided with TIA due to his cholesterol, high MCV, and other blood abnormalities.  I learned more about these things back in February and March when I was being tested regarding memory problems--the cause of ishemic attacks or iscemic amnesia is invariable cardiac, from blood clots forming at funked up valves.  The virus and meds are rarely to blame.

Best,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline MarcoPoz

  • Member
  • Posts: 396
Re: ...If I only had a brain...
« Reply #3 on: June 16, 2008, 04:11:50 PM »
David--yep I believe you about the cardiac relationship here--but it's not so in my case.  External and internal ultrasounds show no malformations of any kind.  No blockages either--no evidence of any arterial plaque at all--so that's cool--must be the Sicilian half of me responsible for that ;-)

So they ruled out any relationship to clots/blockages after all of the ultrasounds and MRI's.  I was actually glad that was the case.

They still think it may be related to the type of migraines I get--and the constriction that occurs.  No plans yet for any additional meds.

This had made life a bit more interesting though ;-)

Offline BT65

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  • Vegas baby!
Re: ...If I only had a brain...
« Reply #4 on: June 16, 2008, 04:33:31 PM »
Marco, I haven't experienced anything like that, but I want you to know you're in my thoughts. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

BeTheLove

  • Guest
Re: ...If I only had a brain...
« Reply #5 on: June 27, 2008, 06:06:14 PM »
Hi Marco,

Just wondering what you do to help your migraines in general.  Are you under the impression that what you experienced was just the Mack Truck of all migraines or something else?  What's your vibe on that?  I used to get migraines like once a week and it was a long road to recovery and figuring out the plethora or triggers causing them.  I haven't had one now in over a year, but I know I still need to stay on top of using some anti-migraine tricks to keep them at bay.

I don't if you've ever read Migraines Be Gone, but it's a great place to start. 

Offline MarcoPoz

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  • Posts: 396
Re: ...If I only had a brain...
« Reply #6 on: July 01, 2008, 03:34:58 PM »
Odd--it didn't even feel like a normal migraine for me.  My normal migraines are very sharp, intense, mess with my vision a bit--make me super sensitive to light, sound and smells and also trigger nausea.  This time I had no pre-occuring symptoms.  I went from normal to blind and unable to form words in about 30 minutes.  The symptoms came on progressively and steady.  Then after a couple of hours subsided in the same manner.

My normal way of treating migraines is about 5-6 extra strength Excedrin chased with a strong cup of coffee.  As soon as I can--I lay down and turn off all the lights and just hope it doesn't last all night.

Offline ubotts

  • Member
  • Posts: 347
Re: ...If I only had a brain...
« Reply #7 on: July 07, 2008, 04:15:43 PM »
Hey Marco,

I am sorry you have to go though this.

HIV is enough, though I don't believe its do to hiv meds..

This sounds like a whole new illness to me..

My heart goes out to you and I hope you find your answers asap.. ??? This does sound baffling to me and I guess to others in our group...

My prayers are with you my friend..
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline MarcoPoz

  • Member
  • Posts: 396
Re: ...If I only had a brain...
« Reply #8 on: July 07, 2008, 04:21:39 PM »
Thanks for your kind words!  Actually the whole thing is still kind of humorus to me.  I think living with HIV this long has helped give me a 'different' perspective on things.  The brain-experts that I've seen think that this isn't gonna kill me--so the rest of it is just rolling with its changes.

If I can't laugh about this stuff--I'd really be in a world of shit ;-)

Offline BT65

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Re: ...If I only had a brain...
« Reply #9 on: July 07, 2008, 09:42:21 PM »
Marco, I'm glad things are going well.  And you're right-a sense of humor is imperative. 
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

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  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: ...If I only had a brain...
« Reply #10 on: July 07, 2008, 11:17:16 PM »
Hey Marco,

I am just catching up here. Sorry bout that.

All I can add is thank goodness you have your sense of humor.

I think without it we all would up shit creek.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline ubotts

  • Member
  • Posts: 347
Re: ...If I only had a brain...
« Reply #11 on: July 08, 2008, 07:19:21 AM »
If you dont have a sense of humor about our medical problems, then your in deep shit.

Glad you feel that way. It makes things a bit easier to have a comical out look ;)
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline MarcoPoz

  • Member
  • Posts: 396
Re: ...If I only had a brain...
« Reply #12 on: July 08, 2008, 10:09:53 AM »
Yep the main point of dealing with these interesting symptoms--is just HOW do I begin manipulating this so that I get more chocolate and beer????? ;D

 


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