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Droopy Eyelid - Ptosis


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At the moment im coming out of a very bad POTS crash - probably my worst. Fatigue is a major issue right now and work is a real struggle. Yesterday, out of the blue my eyelid started lagging again. Its obviously ptosis - Its the second time this has happened. Makes me wonder about M.gravis or what the **** is going on with my POTS. Ive read that the rare cause of orthostatic hypotension where there is no Norepinephrine also causes this symptom.

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I don't have a definitive answer as to why, but yes, I've done the ptosis thing too. I had it intermittently for over a month (if I remember correctly...it's been years now) when I first came down with POTS. I also have migraines, which could possibly account for the ptosis, particularly since it was unilateral; however, this explanation doesn't resonate with me particularly strongly because of the timing of the episodes I had. I also have narcolepsy with cataplexy, and while cataplexy can manifest in all sorts of weird ways, it seems unlikely that it would be one-sided. All things considered, having POTS, cataplexy, and migraines, I suppose I should be surprised I'm not having more odd bouts of weakness, paralysis, and altered sensation than I do. :-p But for what it's worth, it could be the POTS that caused my ptosis, in which case you're not alone.

(I should add that MG was ruled out in my case.)

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I get it a lot when I'm in cluster headache mode. In fact, it is a leading indicator of cluster headache in a lot of people. I occasionally will notice a slight case of it when I'm not in a cluster cycle, and I, too, have questioned MG, especially since I responded to mestinon in a way that someone with MG would respond.

Back to the cluster headaches....much of the literature surrounding them talks a lot about imbalances between sympathetic and parasympathetic responses. This imbalance shows in the head and facial areas for whatever reason. I don't imagine that this is too different than what many of us experience with POTS or other autonomic dysfunctions. In fact, my doctors and I don't separate my cluster headaches from this...it's just all kind of part and parcel. Why we sometimes get headaches with the "imbalance" is anyone's guess, but I can keep a better handle if I address all of the symtpoms as part of the whole.

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Rama.

Have you had the bloodwork done for detecting acetylcholine receptor antibodies (Achr antibodies)?

I test positive for the MG antibodies, but luckily I have not experienced clinical presentation yet, though my neuro says fatigue comes with MG and I always have fatigue. He keeps his eye on me by retesting me clinically and checking my Achr antbodies about once/year.

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I've had a droopy lid since 2002--when some of my ans weirdness started. I had mg ruled out. It's been noticed by several doctors since. I have to imagine it's part of my whole ans/migraine/brainstem weirdness. I no longer notice it, but when I'm tired, I notice that lid is a little slower to blink.

BTW, I was blown off when I first mentioned it-- told it was "stress." GRRR. But the three specialists I've seen recently-- a neurologist, neurosurgeon, and geneticist have all commented on it.

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A lot of interesting suggestions here. After two years of being sick, and never having had this symptom, I moved from CA to Maryland to be near my family. Being in the humid, low pressure of Maryland SET ME OFF. I had symptoms I could have never even imagined, even on my worst days on CA. My worst was the head pressure, the whooshing and feeling like my blood was going to bust through my arteries and veins in my head. At that time, I noticed one of my eyelids drooping. It stayed like that for the two months I was in MD and suffering with these symptoms. I had to move back to CA, and sure enough, it went away and I haven't had it since (it's been like nine months).

No idea what triggered that, but I too was at an all time POTS/dysautonomia/whatever is wrong with me low. I have absolutely no reason to suspect that I have MG, but it is interesting you tested for the antibodies. I thought it was a really sensitive test - meaning most people who test for the antibodies go on to develop MG? That is not to scare you, as I really don't have a clue, but I am curious about the likelihood of your positive test corresponding to the eventual development of MG. I have read that the ptosis is often the first sign.

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Don't scare me Ram. We have similar POTS symptoms!

I'm on Mestinon now, for POTS, so I don't notice this 'drooping' - I remember I used to have twitches. Was very annoying so whatever it is went away. And I don't know if that's from the move to CA or from the Mestinon.

In any case, Mestinon is widely used for a long time by MG people so it's worth a look at. I take a very low dose and if I take more I get the 'overdose' symptoms.

I honestly hope in all our cases it's POTS related and not MG. No one deserves another chronic illness on another.

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I dread the MG autobodies test because there is history of other weird autoimmune illnesses in my family so I dont particularly want to add yet another one.

its a weird symptom. Today my POTS symptoms have improved dramatically yet the eyelid is heaps worse - i look like a white version of Forest Whittaker or that guy from Radiohead... weird...

Maybe its just POTS - maybe its combined MG - either way it gives mestinon a look in...

The Mito comment is interesting. What kind of diet is it? Cant hurt at all - im willing to try anything

Edited by flop
Spelling of Mestinon corrected
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I dread the MG autobodies test because there is history of other weird autoimmune illnesses in my family so I dont particularly want to add yet another one.

its a weird symptom. Today my POTS symptoms have improved dramatically yet the eyelid is heaps worse - i look like a white version of Forest Whittaker or that guy from Radiohead... weird...

Maybe its just POTS - maybe its combined MG - either way it gives mestonin a look in...

The Mito comment is interesting. What kind of diet is it? Cant hurt at all - im willing to try anything

On the one hand, I understand not wanting to add another diagnosis, but on the other hand, your response doesn't compute with what I've seen about you on this forum.

What I mean is, you obviously have something malfunctioning because you are on this forum. You seem more interested than most in finding out exactly what the malfunctioning part is so you can fix it.

If you had an opportunity to find out the cause of your POTS and have a potential fix, you, of all people, would seem to be the most interested.

Of course I don't really know you. I'm commenting on what I've seen on here.

Maybe Mestinon could "fix" several different malfunctining body systems in you, you know?

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The same thing with me it was one eye. it bothered me so bad, as I was always known for my eyes. I hated looking in the mirror. I kept looking to see how much it would cost to fix my eyelids fully knowing I could never afford it. Also my chest muscles hurt so bad that they did a full panel of MG test that west off to the Mayo Clinic. I remember being on the Mestinon and telling the Plummy spec that since I started the meds that my drooping eye went away. He was surprised and now that I think of it the muscle pain in the chest is gone as upon waking my chest hurt so bad to breath.

At this same time I was on strong hormones for a cancer treatment, that I found out masked some other blood work I had had.

Re: check current antibodies from E Barr V. Now I wonder if it also masked the antiboties to to MG. I'm going to ask the doctor this week. My Pots/neuro in Boston.

It's funny I have bad side effects from the Mestinon, but was so happy it fixed my eye.

Blessings and Love, :lol:

BellaMia~

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Well this has progressed.

The pupil in the effect eye is now not responding to light, so i have David Bowie pupils (two different sizes all the time) and its not focusing at all well.

Strange thing is that from the time of the onset of this whole eye and eyelid thing, my POTS has gone from 100% to like 20% - massive improvement in energy and other issues -

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Let us know how the testing goes.

Mestinon is a good thing with the right dose, I've found. I'm going back up to 60mg/twice a day instead of 30mg/twice a day to get back where I was before I took too high of a dose (and had the yucky overdose symptoms which sucked, but wear off fairly quickly).

The worst I had with it was 4 days of, and how do I put this nicely, stomach adjustments. Expect a few more than usual bathroom trips that can't really wait. Maybe you'll get lucky, but from what I read this is very common.

Good luck and extra points for somehow getting David Bowie and Radiohead referenced in the same thread about Dysautonomia. :/

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I've got the uneven pupils also, it's very slight, but at the eye dr after the dilating drops my eyes take days to return to normal. (that's even with reversal drops) I also have a retinal hole going on. one doc says it's a macular hole and another says it's in both eyes. I only know I need to have this issue re looked at as this whole being sick thing and all these specialist being in the city, have put my eyes on the back burner. ;)

My retinal sp. always said, "I have a friend like you." "Wonder what she say when I finally return back?"

I'm finding all our oddities very, very interesting. Thanks everyone for sharing.

Yes, let us know how things go.

BellaMia~ :P

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Hi Ram!

The Cleveland Clinic Mito Cocktail is:

* Coenzyme Q10

* B complex vitamins: thiamine (B 1), riboflavin (B 2), niacin (B 3), B 6, folate, B 12, biotin, pantothenic acid

* Vitamin E, lipoic acid, selenium, and other antioxidants

* L-carnitine (Carnitor ?)

* Intercurrent illness supplement: vitamin C, biotin

Glad to hear your energy is up!

-wb

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  • 4 months later...

Rama,

Check out this link: http://en.wikipedia.org/wiki/Horner's_syndrome

I am convinced that there is some connection between this condition, dysautonomia, and vascular blow-outs. I don't mean to frighten you, BUT 2 of my 3 brothers (all have dysautonomia) have had problems with veins/organs blowing: carotid dissection @ 30 y/o & aortic aneurysm @ 29 y/o. Both had ptosis/horner's sndrome. My middle brother even had two different colored eyes as he was growing up. It ultimately resolved.

If you haven't recently, plan for the new year, to treat yourself to a visit to a cardiologist and get a good look at your heart & carotid artery....just to be safe. There is ample evidence that points to this condition as a harbinger of something more.

Julie

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I've had a drooping eyelid since 2003, when I first started to get weird. I believe it's triggered by my brainstem compression-- it gets worse when all my other chiari symptoms worsen.

You're right. I've read a few articles that do link Horner's syndrome to Chiari Malformation. Sorry you're dealing with this too ;)

Julie

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Guest tearose

Interesting. I too have one eyelid that will droop when I am more symptomatic or very fatigued. It is my left lid.

Sadly, my father had this too...before he was dx with PD which in his later years was then dx as Lewy Bodies... I know he had ANS issues that were never understood or dx.

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Droopy eye lids are also a sign of low norepinephrine levels - and may be indicative of norepinephrine exhaustion possibly through impaired reuptake and over stimulation of noradrenergic receptors. That is why L-DOPS should be helpful -although too often the theory and the practice of POTS dont compute.

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Guest tearose

L-dops is what made my Dad decline so much faster rama. It is a difficult topic for me...

The drugs did not help prolong any quality of life for him, they made him zone out.

I have some similarities to his symptoms. He never had the benefit of ANS testing like I have had. I have other issues too. The lymphedema.

Anyway, I hope they research more about the droopy eyelid issue.

How can I have both hyperadrenergic pots and then low norepinepherine causing the droop?

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