Hi Lazerorca,I'm sorry you're struggling so with your tremor. I don't know how you stand it. My heart goes out to you.
I have essential tremor of the head and voice. Stress, hunger and lack of sleep make it worse. I have insomnia and severe problems with short term memory.
Overall, it's improved, but still there. Now no one can really see this but me.
Sometimes you can see it when my hair moves.
If I put my chin on my chest, that's when it becomes apparent. So obviously I can live with it. But I have found RX Amantadine.
I was misdiagnosed from 1989-1994 with myasthenia gravis. Diagnosed with LD April of 2003. Have received 18 months of treatment.
I'm awaiting test results for Bartonella from LabCorp thru my insurance.
I am currently on: first time Doxy ramp up to 400 mg daily; Amantadine for dopamine in the brain; B12 injections daily (doesn't hurt with insulin syringe).
I've taken Klonopin for 10 years at bedtime. I take low dose Elavil for sleep or pain. But the Elavil (seratonin) will reduce my dopamine levels. They're inversely proportional.
I also took Wellbutrin starting in l994 for a severe chemical depression diagnosed via brain mapping (Brain Electrical Activity Mapping or BEAM).
I don't take it now. My brain keeps changing with ABX and the Wellbutrin is just too much stimulation.
In the past for LD I've taken: 180 Rocephin injections & Flagyl; Zithromax; & Mepron.
I'm hoping to add Rifampin to treat for possible Bartonella.
I just saw my new LL/FNP (family nurse practitioner/member of ILADS)last Friday.
She listened to me. The greatest new thing was the Amantadine.
I had taken a few tablets for the flu in the early l990s before I knew I had chemical depression and LD.
All I knew, was that I felt more clear-headed with the flu taking Amantadine-------than without the flu.
I did not know why it helped. Back then I didn't have the internet.
After taking Wellbutrin, which augments dopamine in the brain, I also discovered that Amantadine helps with dopamine in the brain.
I've wanted to try Amantadine for a year, but was told no by my former LLMD.
I take Amantadine 100 mg in the morning. The internal tremoring quietens. My voice was strong on it the first day I took it.
Amantadine lifts depression beautifully without horrible side effects.
Also, immediately after taking the first B12 injection, my voice got very deep for a short time. By that night, I felt like a new person.
The Doxy has already thrown me into pain tonight. Someday, I want to eventually try Minocin for my brain, but I was afraid it would be too strong & kill my head.
I will probably have to re-treat Babesia with Mepron as I only took 2 bottles. My Babs symptoms are gone-----for now. We'll see.
My tremor of the head went wild on a 2-hour herx of Mepron. It was taken in combination with Zith, but Zith didn't cause the increased tremoring.
Then it just passed.
I was diagnosed in 1994 by Dr. J. a movement disorder specialist in Houston at Baylor. Ten years ago, he was the best Doc to see.
I just went & pulled my medical record from him. I don't understand some of the terminology------even if I look it up.
It states:
There are mild, low amplitude, 8-9 Hz, lateral oscillations of the head in a very slight "no-no-" fashion.
There is very slight anterocollis. There is a 1+ postural tremor at 8-9 Hz, most prominent in the wing beating position.
There is a slight truncal tremor and moderate bilateral isometric tremor in the hands.
Current exam is significant for mild lateral head tremor with slight left ptosis, mild voice tremor, and moderate isometric hand tremor.
She may be developing mild or intermittent spasmodic dysphonia; however, it is not severe enough to require treatment with botulinum toxin injections.
End of Record
Back then, Inderal & Mysoline were recommended. I've been on Inderal in the past, but never Mysoline.
My left eyelid (ptosis) which they said was congenital (laugh out loud)-----does not droop anymore after ABX.
I no longer have daily facial, ear or head pain. But I still have a very weak neck.
I can still develop severe pain in the left eyelid, teeth, forehead or back of head when on ABX that go to the brain; or Mepron which goes to the brain.
It has taken me a long time to figure all this out.
My new best friend is Amantadine.
Dr. B.'s Guidelines state it helps ABX to be better absorbed. It is also an anti-viral which is good.
I hope some of this might help.
I really wish you could see a Movement Specialist Disorder just to see what he has to say.
A neurologist should readily refer you to a good one.
Your tremor sounds more severe than mine. I bet they might have something to give you some relief. They are the experts in this.
I know it's just another label, but IMHO anyone with severe tremors should consider seeing a Movement Specialist Disorder at least once. That's what I did. I never had to go back.
Take Care,
Jan
[This message has been edited by RECIPEGIRL (edited 20 October 2004).]