Long time tbi that needs advice! Help!
 

I suffered a tbi in 2002 from an auto accident. Since that time I have been miss-diagnosed with MS due to my symptoms and severe brain scarring. I have since been chasing the miracle cure for migraines and depression. I am currently on anti depression drugs and therapy for the migranes, but nothing seems to work. I suffer rapid mood swings from very caring to extremely violent with thoghts I have never had before. I am very stessed by my work, home life (son just diagnosed with Diabetes type 1)( Wife that relies solely on me, ie bills, repairs, autos etc), and I am and have always been the family go to guy. I find nothing fun and really don't care anymore! I have no hobbies and my wife says I am like an "old man". I could see another counseler, and I have talked with my regular doctor and he changed my depression meds and so far it has helped some. If anyone has some suggestions please let me know....:confused:

I got my TBI in 98. I've lost everything, two business's, my wife, my children (from first marrige, whom I raised, stopped speaking to me), and needless to say, life is like ****.

You don't mention any meds that you take, I hear and am beginning to suspect Keppra as one that brings out violent emotions and depression. READ the literature that comes with your meds, or look them up.

I had a subdural hematoma, a hygroma deep in around the top of brain stem. Three years later, I hit a patch of ice in a nice big Buick, and hit the concrete barrier. Thank goodness for those second gen air bags and the seat belt. Oddly enough, (like the three stooges, hit larry on the head once, he's got amnesia, hit him again, he's ok), that "soft hit" was enough to relieve some pressure or let it move around in my skull. Because the doctors would Not operate to relieve the pressure.
I seemed to "wake up", from being asleep all the time.

Another that helps me a lot is a couple of the Alzheimer's meds. Aricept and Razadyne.
They really clear the "fog" for me.

I take Zonegran at bedtime to prevent migraine, and imetrex, maltrex, etc. for when I get them.
And, i do get them. I take cymbalta also for the depression/pain.

I have RSD as well and TOS, discs, and so forth.
Sleeping is an entire ordeal.

Do you have a good neurologist?
Pain management or neuropsychologist?
I think you should have those two at least, and have seen a neurosurgeon.
I'm not a doctor, that's just my experience.

I know just what you mean about nothing being fun, and not caring.
Sometimes i feel as though I'm just barely holding it together.

From the little I know about you, I think that's what I can say.
But, I'll keep an eye here, and so will others.
PM me if you wish.

Pete
asb

Old TBI
 

My meds are Enderal for tremors and shakes, and Lexapro for depression. My MRI reads like a wheelchair bound MS patient, I walk still with eratic gate and missed steps if in a hurry. I have been going to Barrows Neurology in Phx, AZ for 5 years and they cannot believe that I still work full time based on my brain injuries and migraines.
I was ejected out the back window of a 1966 Volkswagen. I was stopped and rear ended at 60 plus by a 4wd blazer. I was partially ejected out the back window of the car. The only thing that kept me from going out completely was the seat belt caught my left leg and pulled me back in. Skull malformation on right side above ear and to the rear, and blunt force trama to the right temple area and ocular socket. All doctors stated I should have died! I should not be here today. Is this enough for treatment or are they missing something? Thanks :(

I'm not a doctor. Indeed, neither of us should be here, I'm very sorry for you, and the pain you're in.

It kind of seems to me that you've being treated rather conservatively. Do they give you anything for the migraines? There are preventive meds, and direct acting meds.

Have you seen any other docs?
Neuropsychiatrist?
Other neurologist for another opinion?

I hope that you're being treated well. If a doc gets too agressive you may have side effects.(If they're not knowledgeable about the meds). However, I do think that you should perhaps step up the treatments. Maybe find someone who specializes more in TBI.

Let's see what some other folks can bring to the table?

There are lots of good people here, that can offer some advice.

I wish you all the best,
someone else will have some other suggestions soon!

Pete
asb

Thanks for the vote of confidence. I do take migraine preventives and treatments also. I will wait to see what the next day brings. That is what Has helped me so far. Your a good person Pete. Thanks again.

self help
 

self help elf

hi sorry you are dealing with this I can relate to the feelings you have, try to remember emotions and apply them to situations, a kind of fake it to you make it, thing its what we call a work around, try to view your self as a work in progress, a brain injured person is not easily understood by those around us , meds for me were a disaster, but if they work for you thats good, I feel they just wrap it in cotton wool and in the early stages suppress emotions, and for me lead to an explosion of emotion

welcome you are not alone :)

Vini,
I agree with what you say about some of the meds.
I will NEVER again try two new meds at the same time.
(Honestly, my life was coming apart faster than a bomb, and my doc was doing all he could, it turned out that my wife was using the injury against me, in every way she could. I had a book, that I "highlighted" things in for my doctor, she took it, used it against me, THEN, shared it with her Lawyer!) I got ambushed in court!

First we find out who our friends are.
Then, we start re growing.

I couldn't stay awake, so they put me on Provigal. Having rsd as well, it drove the pain crazy. Some others I don't remember, but usually I could tell very soon that they had evil side effects.

Like I said, the Altzheimer's meds help to sharpen my thoughts, and ideas a lot. I'm still not the same after 11 years, and don't suspect I'll ever be, at this age. Now 53.

pete
asb

Hi there. Although I don't have a TBI, my husband did last year. His recovery has been amazing, and I believe part of it may be a supplement I got for him. It's Acetly L-Carnitine with Alpha Lipoic Acid. I have taken it for my brain fog and it clears it up so well.

Pete, you mentioned the Alzheimer meds and that's what made me think of this. There have been several studies on Alzheimers with this supplement and it's been promising. It is one of the amino acids, I believe and the "acetyl" form helps it cross the blood brain barrier. It actually helps the nerves to regenerate. It also helped me with some neuropathy I was having, due to my conditions. It isn't contraindicated in any illness or with any other meds that I have been able to find.

It may be worth a try! Let me know if you'd like any more information on this, and I'll try to find some links for you.

Also, I have found out that TBI itself (and probably all the meds prescribed for it) cause some vitamin and nutrient deficiencies. You all may want to check the Vitamin and nutrition forums. I believe there is a link there where you can check to see deficiencies caused by certain drugs.

Hope some of this helps someone - at least a little!

Hugs!

Becky

Meds
 

elfatdiablo,

I strongly agree with the nutrition comment. Good vitamin and other supplement therapy is definitely worth trying. It can take a long time to see the benefits as the brain is slow to heal.

The Enderal most likely is Inderal. That is propanolol, a blood pressure medication. Do you track your blood pressure? I would suggest it.

I would also suggest you find a good neuropsychiatrist. They are often much better at medications for issues such as yours. What have you done to change your environment? Your job needs to be a low stress environment. You cannot tolerate stress. That is carved in stone fact.

Two other issues to get checked. Have a thorough hormone panel blood test. There is a malfunction in the pituitary from TBI that can cause all of your symptoms. A doctor with experience with male hormones and tweeking them to get best blood levels could be a life saver. A "try this" approach is worthless. You want a specific review of your hormones. Then a specific prescription to adjust them. Hormones are like juggling 10 tennis balls. If one gets out of whack, the whole bunch can get dropped.

There are also enzymes that may help you. My memory is failing me right now so I cannot suggest anything specific about enzymes. Enzymes can make or break the way the brain gets nutrition.

You also need to get yourself and your wife to a brain injury support group. She needs to talk with other wives about this issue.

Your regular doctor should not be prescribing your meds. I believe it should be against the law for GP's to prescribe SSRI's. You need to find a good neuropsychiatrist who knows how to work with brain injury patients. Rehabilitation specialists are some of the best a MTBI. Look for them under "Physical and Rehabilitation Medicine" Call and get recommendations. Check with your BIA (Brain Injury Association) affiliate.

BIA of Arizona
President: Mary Bradley
Executive Director: Mattie Cummins
777 E. Missouri Avenue, Suite 101
Phoenix, AZ 85014
Phone: 602-508-8024
Infoline: 602-323-9165
Fax: 602-508-8285
Toll Free: 888-500-9165
URL: www.biaaz.org
E-mail: info@biaaz.org

You need to find a specialist to help you. Neurologists are not always good at rehab or other MTBI issues.

Hope this helps. Been there. Lived it for most of my life.

Becky...
Can that Acetly L-Carnitine with Alpha Lipoic Acid be purchased at say a Rite Aid?
Thanks...

And,
Mark
Wonderful advice!

Thank you both!
(Although, I didn't ask, I learned!).

pete
asb