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

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Old 11-25-2014, 03:11 PM #1
Everwilde Everwilde is offline
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Everwilde Everwilde is offline
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Default Should I Move, or see another doctor?

Hi, Long-time reader/poster here, looking for input. I had my concussion over 7 years ago (am now 38), and still have a constellation of issues that come and go, seeming to correspond directly to barometric pressure changes (and the occasional bump). I can even be symptom free, and feel great as long as the weather is good, but then we get some unstable weather, and I am miserable. It can turn bad pretty suddenly, but is a little slower to get good again, as I am wiped out from the issues. Symptoms from greatest to least:

Head pressure (can last from days to months during bad weather)

Chills (body temp was 95.1 last week, hard to get warm even with coats on under blankets in 80* Room

Fatigue (Worse than mountain climbing)

Loud noises (right ear, can't be around my kids)

Classic Migraine (right side, last 1-3 days)

Slowed Reaction Time (driving, working, talking, etc)

Can't Focus / Blank Stare

Can't Handle Details / Small stressors

Hunched Posture (because I am cold?)

Slurred Speech

Head 'Static' (right side)

Hot Flashes/Sweats (Especially going to sleep at night)

Headache

Visual disturbance (Bright spots, also Aura with Migraine)

Insomnia (Can't sleep when barometer is rapidly rising or falling)

Tingling along brain Centerline

Occasional Nausea

Dramatic Dreaming (Plane Crashes, Shipwrecks, Accidents, Etc

I have seen quite a few doctors, neurologists, and a good NUCCA Chiro. One neuro told me back in 2007 that it was PCS, and it would be with me for life, and there was nothing he could do. He also said that I was having a continual acephalgic migraine - (a migraine without much headache). Another neuro said that nothing could be done and that I should move if I felt better elsewhere. I was not interested in the anti-depressant road, so I moved my family to WA, and got rid of 2/3 of my issues because the weather was better here.

Now I am contemplating another move to So Cal or AZ to minimize the rest of the symptoms. I have been to AZ for the past few winters, and it helps out tremendously! It turns around my health in short order, and I can't wait to get down there again next week. So, it seems that we have found a solution, but wondered if I should get a few more medical evaluations before we make another big move? We have extended family here, a nice place, a nice church, great friends, but it is all nothing when you are sick so much.

So, the question is: Has anyone heard of a good doctor/neuro (maybe research doctor?) that would be helpful and understanding of my condition (preferably in the western US?) I had a CAT scan early on that showed nothing, but have never had an MRI. Is it possible that there is just a damaged vessel or piece of tissue out of place that is restricting blood flow to the right side of the brain that could be surgically repaired? Has anyone heard of this? I asked a neuro, and he laughed at me, but he did not do any imaging. I am "self pay" so wondering if I should give the medical community another shot, or if it would just be a waste of money.

Sorry to ramble, but I am at another big cross roads.
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Old 11-25-2014, 07:00 PM #2
Mark in Idaho Mark in Idaho is offline
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Mark in Idaho Mark in Idaho is offline
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There are two issues for you to consider.

What altitude are you living at ?

Have you had all of the hormone testing to see why you are cold and have hot flashes ? Thyroid, blood sugar, and such. I think a full metabolic panel would be worthwhile.

Has anybody observed your sleep, especially those times when you have dramatic dreams ? Are you breathing properly. Many of your symptoms are common to sleep apnea.
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EsthersDoll (11-27-2014)
Old 11-25-2014, 07:25 PM #3
Everwilde Everwilde is offline
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I am about 1600' here in central WA. I have not had a panel done, maybe this would be worthwhile. Might have to wait until I get back in the spring, as I will not have all these issues in the South, and I imagine that the issue should be apparent when the tests are carried out. Thanks for the input!
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Old 11-27-2014, 12:10 PM #4
EsthersDoll EsthersDoll is offline
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I was actually just going to chime in to say what Mark already did - sounds like hormones.

I sustained a concussion and it caused me to have hypopituitarism and that condition made me suffer from a lot of the symptoms you listed.

I see a specialist who's primarily a researcher here in So Cal and he manages my care and hormone replacement therapy and I'm doing significantly better than I was before I first saw him.

People travel from all over the country to see him though... and there might be a specialist in your area who could treat you if you needed it too.

But your PCP should be able to order the first round of tests (blood work). I've posted articles about the details in the stickies at the top of the forum.

Otherwise, yeah, if I could move to reduce symptoms then I would.
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Old 12-04-2014, 02:53 PM #5
Everwilde Everwilde is offline
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I left most of my symptoms in the North when we drove down here. I had a little pressure from that rain that just went through, but otherwise have not been this good in months!

Interesting about the hormone thing. Is there any chance that I could get hooked up with the research doctor you mentioned in So Cal, as I will be in AZ and So Cal for the next several months?
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Old 12-04-2014, 06:09 PM #6
Mark in Idaho Mark in Idaho is offline
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Everwilde,

If you left click on EsthersDoll's screen name, a list will drop down. Select 'other posts' and you will see some prior comments. She has a link to a webinar and other comments. She has a long post where she give the whole hormone package, including who she has worked with. It may be in one pof the stickies at the top.
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