mcpucho

Tried mestinon, did nothing for me (went up to 60mg 3x a day for a week, no response). Wondering if I should try florinef or midodrine.

Let me know what has been more effective for you. Thanks. Zip.

Nictotine is actaully a serotonin reuptake inhibitor, it boosts serotonin, not decreases it. There are studies for nicotine based antidepressants and anti-inflammatories for nicotine's effect on dopamine, acetylcholine and serotonin receptors respectively.

St Johns Wort can have lots of side effects and drug interactions. Do your homework before taking it.

High dose (2 grams per kilo of bodyweight) IVIG has gotten rid of 95% of my neuropathy, which was VERY bad. Including terrible muscle twitching throughout my body.

Thanks. I appreciate each reply.

Can there be a connection between dysautonomia and some kind of immune system dysfunction? I have mostly worked with Rheum. drs, but I'm not sure they are the best doctor to see for dysautonomia....are they? What type of doctor would most likely be able to look at my entire picture....as I think everything going on it connected?

Rhonda or Maggs, since your situation may be similar to mine, if you can think of any info, tips, suggestions, tests to look into or things you've learned that might help me, please pass them on!

Yes there is a definitive connection between autonomic and immune function

You should be seeing a nuerologist, they can run autonomic panel of testing. Also an immunologist can check underlying immune dysfunction such as deficient IgG, IgM, IgA and other immuno-deficiencies. Ask your PCP for referrals. Some doctors specialize neuroimmunology as well, which is your best bet. You can check the roster at your local hospital and see who list neuroimmunology as a speciality and see if they have a private practice.

Well doc started me on Mestinon, wants me to take 15mg 4 times a day (since the half life is only 4 hours).

Don't know if i can break up these pills into quarters so might try 30g twice a day and see how that goes. If response is good I will see if the sustained release (180mg), in a split does (90mg) may be good for me.

The theory behind using Mestinon for POTS symptoms is that antibodies get caught in the aceytioline receptors (AChR), aka ganglia. So I had my neuro take an AcHR test and some others and sent them to Mayo Clinic and we'll see what we get back.

I take the IVIG for autonomic and immunologic issues. My orthostatic tolerance improved greatly on it, until I started to withdraw from Cymbalta. I had a severe withdrawal reaction (started going mental) from Cymbalta and they put me back on the drug on the lowest dose and want me to "titrate" over the next few months. My balance nor energy has been as good since. Terrible time with this drug.

I can't take the Catecholamine testing until I get off the Cymbalta, since my results will be skewed.

Keep you all updated, and be well.

I have neuropathy that comes and goes and it is extremely unpredictable. It is hard to explain to the specialist doctor why the bladder will malfunction for three to four months and then seem improved! Then I will have facial numbness and some blurry vision for a few weeks and it will go away!

I believe some of us have a strain of dysautonomia that is more inflamed at times than at othersl

My pcp has seen me through many years of this unfolding dysautonomia and is convinced that many symptoms are related and will speak to any specialists I have to consult with to explain my problems.

I hope your pcp can be an advocate for you too!

Doing the presumptive lyme treatment is a serious decision.

For some it works, for others it does not.

I was treated for lyme and regretfully must say I HATE the fact that now I am allergic to many antibiiotics and the symptoms did NOT go away after months of oral antibiotics and weeks of IV with a PICC line.

I think there are other causes for dysautonomias that are not yet discovered.

I was offered neurontin for the neuropathy but declined it.

For as long as I am able, due to all the negative side effects and/or long term problems drugs can cause, I am trying to do all non-pharmacutical treatments.

...I'm not sure how long I can manage, but I continue to try...

Where was your POTS dx?

Can you go back to that place and ask these questions? I have found no local neurologist knowledgeable, so my pcp calls out to Minnesota as needed.

best regards, tearose

I had many courses of antibiotics for Lyme, with some success, but in the end it was not fruitful. There is a debatable post-lyme syndrome, where your body becomes autoimmune because it thinks you still have the Lyme antibodies but you don't. I found IVIG (intravenous gamma globulin) to be fantastic for this and has gotten rid of 95% of my neuropathy (tingling/numbness). You can speak to a neuro or immunologist about this.

Thanks for your replies. I see my neuro Monday, what dosaging are you folks on for the Mestinon, and did you ramp up from a lower to higher dose? I would like to be prepared for our consult. I've read Dr Grubb's medical articles and will bring those with me.

Much thanks.

Also did you find that the Mestinon helped with energy/fatigue in addition to balance?

Cheers,

Zip

Hi. Hope all is well.

Have interesting and long backstory, but will give the short of it.

I have symptoms of orthostatic hypotension (OH) - though it may better be called neurally mediated hypotension (NMH) - for many years now after Lyme disease, which was a late diagnosis and became chronic and autoimmune.

I have been receiving high doses of intravenous immunoglobulin (IVIG) since May of 2006 and made great advances, but OH never fully recovered. Was concomitantly taking Cymbalta, which I stopped, but had withdrawal symptoms from of which I am still recovering (and subsequently had to reinitate the drug at minimum dose) and it has increased OH and fatigue since I restarted. OH and fatigue levels had made great strides as well on IVIG.

Two tilt table tests (10 minute tests) have both been negative.

I have had twice documented cerebral hypoperfusion (when blood is not circulated in the brain properly) via SPECT scan, which is indicative though not conclusive of OH (or NMH, ie POTS).

I have other autonomic problems on testing including decreased sweating (sweat test) and failure of pain sensory test. I also suffer from distal, idopathic neuropathy which the IVIG has been very helpful for.

I am seeing my neurologist next week and want to discuss Mestinon with him, which I've read has had success in trials (versus Midodrine). I am not apt to take Flornief because its a steroid and has a high side effect profile. So I wanted to see some people's personal take on it.

I am also wondering about Adderall, for its Norephinephrine reuptake inhibition (which is also indicated in OH), though I do not like the side effects of these stimulant drugs and was very displeased when I once tried Provigil as it made me very mentally hyper and agitated.

I think I will try to test my Norephinephrine levels, which is a Catecholamines test. Unfortunately this test will have to wait until I am completely off Cymbalta for accuracy.

Wondering if anyone has done that testing for Catecholamines? Also have never had cardio workup beyond EKG, but will do an ECHO (echocardiogram) in two weeks in time.

Guess thats it for now. Thanks and be well.

Zip