Droopy Eyelid - Ptosis

[ramakentesh]

Hi Tearose - I think your getting L-DOPS and L-DOPA confused?

http://en.wikipedia.org/wiki/L-DOPS:

L-DOPS - Doxydropa is a prodrug of norepinephrine and epinephrine used to increase norepinephrine at the synaptic cleft and increase standing blood pressure.

http://en.wikipedia.org/wiki/L-DOPA

L-DOPA - L-DOPA is used to increase dopamine concentrations in the treatment of PD and DRD since it is capable of crossing the protective blood-brain barrier (BBB), whereas dopamine itself cannot. Once L-DOPA has entered the central nervous system (CNS), it is converted into dopamine by the enzyme aromatic L-amino acid decarboxylase (AADC), also known as DOPA decarboxylase (DDC). Pyridoxal phosphate (PLP; Vitamin B6) is a required cofactor in this reaction, and may occasionally be administered along with L-DOPA, usually in the form of pyridoxine.

So they are pretty different.

That is the million dollar question - how can a patient show signs of both norepinephrine excess and norepinephrine depletion? Im not really sure? Distal denervation? Could it be that some patients have distal denervation in their legs while others have it in their upper body? Im not sure but Im loosely quoting Dr Grubb when I say that patients with Norepinephrine deficiency may show signs of both over and under norepinephrine levels either at different times (good and bad days) or at the same time as in the case of the much hyped Shannon et al POTS patient with a functional mutation of the NET gene who I believe demonstrated classic POTS symptoms.

Studies are evolving but I must admit that treatment protocols have evolved at the same speed thus far.

[Guest tearose]

Goodness, bless your inquiring mind rama.

Thank you for the info.

What I also mean with the concern about the drugs is that they gave my dad the L Dopa for PD but he had something else not then understood (Lewy Bodies) and he crashed and shortly thereafter passed away. I think until the researchers fully understand the ramifications of L Dops in POTS we too may suffer in the long term trying it.

I think the article from India you liked on your other post is very accurately getting to one of the missing link. The vascular system is little understood and the "Nitrigeric Nerves" seem to have a "mind" of there own. The vascular system for the brain does one thing and the peripheral vasculature does something else.

In my lay language from the vascular viewpoint we ask...

How can we safely treat one system without damaging the other?

Am I saying it correctly rama?

[megan2]

Ptosis is a classic sign of mitochondrial disease. I think I remember you mentioning something about a family history of cardiomyopathy (or was that someone else)? Good mito doctors are hard to come by, even harder than finding a good POTS doctor, so you have the option of trying to see a mito doctor, or just attempting treatment. If you need more info on dosages for the mito cocktail I can help, just PM me.

I understand wanting to attribute symptoms to POTS, and that might not be false. Some patients with mito-like symptoms end up having POTS and others end up having mito. It is impossible to differentiate between the two clinically.

Good luck and feel better!

[lifesaver]

My left eyelid droops. It is probably related to my Trigeminal Neuralgia--you DON'T want to have this disease at all. When I have facial pain, get edema, or get very tired it droops. My right eye does a bit, but there is nerve damage to the ocular portion of the trigeminal nerve on the left which causes the problem--I am guessing. I get twitches in the outside corner of each eye that are pretty intense and visual changes that come and go with no particular trigger. I have taped my eyelids up a few time--which always reminds me of Aristotle Onassis, who had MG. I go from needing glasses to drive to having 20/20 vision. Sounds like MS with the dysautonomia and sensory ataxia. But so far, no brain lesions.

Still waiting for my neuro to put all the pieces of my tests together and hopefully have some sound answers soon. I have photos of me when my face is swollen and eyes are drooping--people don't believe that is me the change is so significant.

In fact, my eyelids are severly drooping again tonight. Took a picture to document. Do I or don't I call the neuro? Having edema, facial pain and my balance has been way off. Wearing lidoderm patches on my legs and shoulders for the pain. Feel like a walking disaster.

Hopefully we will all get some type of answer soon.

[Neshema1]

i came across this thread when looking up info on the mito cocktail. so, I am kind of reviving it to see if there have been any updates. I also was suspected of having MG and tested negative. I was told I had "Adies Tonic Pupil" in about 1996, back in the days when my dx was "easy fainter." I also have autoimmune disease. My pupils do not react to light well, and one pupil is bigger than the other. Also, they have become droopy (they used to be quite big) in the past year or two. Also, I have retinopathy, among so many eye dxs that it's amazing i can see (with some blind spots & a lot of blurriness that seems to be worse at some times than others)! Light can really be bothersome. I have read about Horner Syndrome, and have heard different names for my pupil issue (sorry, having a POTS moment and can't remember the others), but they are all autonomic. but back to mito. I am supposed to go for a mito workup since my POTS has turned to PANS (pandysautonomia) and has basically hijacked my body and life, despite my protests and efforts to hang on to the life I planned..that's another topic. The docs all agree that something more is going on, be it some cross between POTS, PANs, MSA, PAF, or mito. Kind of kooky, IMHO, since it seems MSA and PAF ppl dont get tachy. but with the droopy eyes, seemed to come neurogenic bladder, speech problems, some ataxia, beyond brain fog, hyporeflexes (not much happens when they bang on my deep tendons), and all sorts of lovely things. I have a lot of positive findings, such as sky high NE levels, severe hypovolemia, and u name it. Now, I am dealing with very low resistance, and keep getting fevers that put me in the hospital, and no one knows why...even had HIV test, which was negative. I DO have EBV (as do many ppl, but mine is a form that recombines DNA and RNA, which could support the acquired mito theory). Havent had the XMRV test yet and been to ill to go for my mito workup. Tried the cocktails, and found riboflavin to be the best supplement so far. Im on daily IVs and a bunch rx meds, which I sometimes wonder if the treatment has confused my ANS more. So, to the ppl who wrote in to this thread, I'd be most interested in hearing your updates. I am a researcher turned deadbeat (sorry, but it feels that way) and am able to understand most of the medical journals when it comes to the stats and neurophysiology...most, depending on the day. Stats part is no problem. I can do advanced stats in my sleep. Connecting the medical dots is another issue. I am not sure dr cohen is still seeing adults, since he moved. I heard a talk by Dr Boles, the dysautomomia-mito pediatrician. It's interesting to hear the mito people talk about dysautonomia. I am not sure we will find many answers in my lifetime. I'd sure like to hear more from all of you.. Thanks!

[ramakentesh]

I am not sure we will find many answers in my lifetime. I'd sure like to hear more from all of you..

when i have some that are more than speculative ill let you know...

I have also had a retinal bleed and weird fevers but the current theory is that they relate to ankylosing spond (which i have).

[Victoria]

. . . .Yesterday, out of the blue my eyelid started lagging again. Its obviously ptosis. . . . Makes me wonder about M.gravis. . . . Ive read that the rare cause of orthostatic hypotension where there is no Norepinephrine also causes this symptom.

Your post caught my eye (no pun intended). I started out with just ptosis, but over the years the muscles in my entire face will sag during the very worst times. Just what a gal needs — looking 25 years older on top of feeling awful. Myasthenia Gravis was one of my previous diagnoses, and I did take Mestinon for a while. It seemed to help a bit, but another doc ruled out MG and yanked the Mestinon. You know how that goes.

My serum Norepinephrine runs high sometimes. This is the first time I've heard that no Norepinephrine can cause ptosis, but I don't know a whole lot of anything. Interesting.

[ramakentesh]

it can cause ptosis but not the whole side of the face as you describe.

[rach73]

Hi

I have found this thread extremely interesting as I also have ptosis daily. When I am ill with a virus on top of the pots my ptosis becomes so bad that my right eye completely closes and the right side of my face sags. If I am really unlucky as I was on Sunday night my left eye will close as well leaving me virtually blind.

The only thing that resolves this for me is mestinon. Initially I was diagnosed with MG and then a year later the diagnosis was removed and I was accused of actually making my face and eye drop for attention! I still take mestinon for ptosis but I have never really got on with it as it causes me to vomit and hdiarrhearhea.

I also get double vision when I am tired.

I never tested positive on the anti bodies or the sfemg for MG, but then if its ocular the chances are I wouldn't.

Its interesting to see there is a mito link as someone else off the forum has suggested that to me.

Thanks for the info

Rach

[toddm1960]

I agree Rach these can be signs of mito, it's worth checking out.

[corina]

rachel, i've been on mestinon for years now and can tolerate it by having a stomach protector at the same time. i've been on mestinon 3 times 120 mg a day and stomach protectors twice a day. maybe you can give that a try to stop these nasty side effects.

hope this helps, take care,

corina

[rach73]

just seen the mistake in my post and it looks like I had verbal diarrhea! It should say "vomit, drool and have diarrhea"! I was put on propanthaline which mildly reduces my problems with it. I don't take the propanthaline now as I have problems with bowel motility.

I think getting a mito diagnosis in this country would be like finding a pot of gold at the end of the rainbow! I will never give up trying to work out what my complex medical problems are.

Rach

[kjd111]

My daughter appears to be in that category of occasional ptosis from insufficient/extremely low norepinephrine. Since her body doesn't 'respond' to stress (from the concussion) she gets no increase in norepinephrine when she needs it - what she gets comes from the medications she's on - and so its a 'finite' bucket. When she's used it up (activity, studying, stress), her eyelids droop. Its the only time it happens.

[ramakentesh]

Id be happy - that condition is different to POTS and seems readily treatable with Droxydopa.