Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).

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Old 10-01-2012, 09:51 AM #11
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The neuro prescribed me topamax because she thinks the fogginess and dizziness is related to migraines. I'm at a point where I'm not really having migraines. I'm lethargic, dizzy, feeling a sense of nausea, and it's wearing on me. The constant endless grind of feeling poorly is taking a toll on my emotions as I'm sure many of you can understand and I'm feeling somewhat hopeless.

I'm two weeks or so into my Topamax regimen which I never really thought was right, but I was willing to try. As I look further and further into what it is, it appears the greatest side effects are exactly what I'm suffering from most. Dizziness, general malaise, and lack of clarity.

My question is now, what has Topamax done for you? If I'm not experiencing migraines, how can this be an effective treatment for me? If clearing the fog is what I need, why would a drug that seems to make one foggy be the choice of action? I'm about to stop and go back to nothing. At least that way I may be feeling foggy, but not crazy. Experience?
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Old 10-01-2012, 01:54 PM #12
Mark in Idaho Mark in Idaho is offline
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It sounds like your neuro is doing the "Try this and tell me if it helps." method of treatment. There is no consensus about using Topamax for Post Concussion Syndrome symptoms. Treating the migraines should be done with the concussion being serious consideration.

It is not uncommon for doctors to treat concussion symptoms as if they are not related to a concussion. Since very few doctors understand concussion, they tend to treat the PCS patient as a head ache patient only.

It is what makes PCS such a struggle.
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Old 10-04-2012, 02:30 PM #13
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Quote:
Originally Posted by Mark in Idaho View Post
It sounds like your neuro is doing the "Try this and tell me if it helps." method of treatment. There is no consensus about using Topamax for Post Concussion Syndrome symptoms. Treating the migraines should be done with the concussion being serious consideration.

It is not uncommon for doctors to treat concussion symptoms as if they are not related to a concussion. Since very few doctors understand concussion, they tend to treat the PCS patient as a head ache patient only.

It is what makes PCS such a struggle.

I couldn't agree with the last statement more. I tried to make it clear on my latest visit to the neuro that my biggest problems recently have been with fog and ringing and spinning sensations, not with migraines. She didn't miss a beat and suggested that these symptoms were all related to my migraines. I tried to tell her again that migraines aren't a big problem for me right now as they were in the past, but these secondary symptoms are actually worse in my mind.

To that, I took the Topamax for two weeks and I started forgetting little things that I shouldn't. I missed a dentist appointment which I would never do. I kept missing the turn home from work. I'd leave something out all night that I wouldn't normally do. Spelling became more difficult. The dizziness may have gotten worse.

Maybe all of these symptoms were in my head, but after researching the drug and the condition more, it seems that a migraine drug isn't appropriate for somebody having my symptoms. In many people, like what I experienced, the other symptoms actually seemed to worsen a bit if not stay the same. The killer, however, was the forgetfulness. I've had shaky memory days since the injuries occurred, but in just two weeks on this drug, I felt like an Alzheimer's patient. Needless to say, the tradeoff, if there was one, just wasn't worth it.
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Old 10-04-2012, 02:34 PM #14
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I'll also note that I had the good fortune of being rear ended about ten days ago. It wasn't too serious, but was just another whip I didn't need. Now I'm getting three mailers a day from lawyers wanting to file suit on my behalf. Insane.
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Old 10-04-2012, 08:01 PM #15
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My main symptoms has been brain fog and after my 1st acupuncture session, am really amazed at how much the fog has lifted. It's still there slightly, but not nearly as bad as it was. It really is like seeing the world through a new set of eyes. And this is just from 1 session of acupuncture. I'd highly recommend it.
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Old 10-08-2012, 06:23 AM #16
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I have brain fog and also feel like I can feel my brain move when I drive over bumps in the road. I find this is coupled with all my other symptoms.

As you haven't already done it, why don't you try taking a couple of weeks off work and getting as much sensory and cognitive rest as possible?

It helped me but you have to plan it, otherwise you'll end up having an hour with nothing planned and end up re-calculating your finances, or something equally taxing :-)
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Old 10-08-2012, 12:53 PM #17
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Confused " ... end up re-calculating your finances, or something equally taxing "

[QUOTE=Uk PCS Accountant;920758]
"As you haven't already done it, why don't you try taking a couple of weeks off work and getting as much sensory and cognitive rest as possible?" "It helped me but[U][COLOR="Blue"] you have to plan it, otherwise you'll end up having an hour with nothing planned and you'll end up recalculating your finances, or something equally taxing. "
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I had to laugh at myself.
You helped me to 'see myself' as I may often end up frazzled, spinning my wheels, in the effort to 'mend my life' as it were.
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Old 03-04-2013, 06:19 PM #18
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and after having a decent couple of months where i even started getting back into decent shape, out of nowhere, the light headedness and fog have returned.

the best way i can describe my major symptom is like this...

hold your breath for as long as you can. that lightheaded dizzyish feeling is what i'm feeling, along with a bit of a headache all day when i'm up and about. of course as these symptoms persist, i start to battle with the frustration, depression, impatience, and all the rest that many of you know.

anyway, there was no trigger. no trauma. not much of anything as far as i know other than about three weeks ago it started slowly and has hit me full force. i haven't worked out or done much of anything other than work the last two weeks and nothing has helped.


anybody have any non chemical suggestions? i tried the seizure meds in the fall but they made it so i couldn't even remember how to get home. tried some anti depressant as well but they gave me a rash. any magic tricks like staying really hydrated or something i should consider? again, it's not so much the headaches, although they are there, but the feeling like i'm not getting quite enough oxygen to my brain that's bothering me the most. i'm afraid this may never ever end.
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