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Losing your vision


Kimberely
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Hello all,

I am new to the forum. I was diagnosed back in February 2005 with POTS after a couple near syncope episodes. I have been reading these discussions and they are wonderful! I am not as informed as most of you so I would like to learn more. B) I am taking salt tablets three times a day and that has seemed to help the tachycardia but I still lose my vision quite frequently. I know this has to be a drop in blood pressure but I am losing it by pulling my hair back, stretching, and so on. I have an 11 month old and this makes it difficult. Is this a day to day symptom for most people with POTS?

Thanks!! :lol:

Kimberely

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Hi Kimberely..

Welcome to the forum!!

Um I have alot of problmes with loosing my sight..I call it a blackout.. and for me they seems to go in cycles where I will "black out" repeatedly for days and weeks at atime.. then I will not have any blackouts for a short time.. then they start up again..

Um..I havent as of yet found anything to stop or control them.. it can be kinda scary sometimes.. as they tend to occur with out warning at times... and make unctiong and day to day living a challenge... not tomention all the other things that go on...

I was told a few times that my blackouts.. (loss of sight) can be a type of migraine...

have you had an thurough eye exam by a optamologist? and you should have the pressure in your eyes checked too..

technology is really neat in regards to the eye.. a few yrs back before I was diagnosed with pots... I went to an eye doc.. and he told me that I have the most interesting eyeball that he has ever seen!! (LOL)

he used this thing and took a picutre of the inside of my eye.. and it showed that my retina is split.. and that it is only hangin on to the fluid retina/ and such by a thread!! amazing stuff..

well anyways.. have you been checked out by a doc who is well versed in pots?? who can order test and keep an eye on your sight probs??

I am sure that you will find great support and reassurance here on the forum..

welcome!

Linda :lol:

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Hi,  welcome Kimberly!  I have visual disturbances, but do not lose my vision, so I can't help you.  Have you seen an opthamologist?  If you haven't I would highly recommend it....morgan

I haven't seen an opthamologist in almost 2 years and I guess I should make an appointment. I lose my vision when I stand up or get up out of bed also so I just assumed it was the same thing. I'll get it checked out. Thanks for responding. :lol:

Kimberely B)

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It would be even better if you were able to get an appointment with a neuro-opthamologist.

I too have trouble with vision. Mine blacks out often when changing positions where everything goes black for up to 45 seconds. Other than that I sometimes have lots of floaters that are really bad.

I also have migraine and do notice a correlation with migraine and the floaters.

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Hi Kimberly,

I'm an optometrist with POTS and I may be able to answer your question about your vision. First, though, can you tell me what you mean by "losing" it? Does your vision go black? Is it in one eye or both eyes at the same time? Or is it small pieces of vision that grow? How long does it last? Or do you mean that your vision goes blurry?

I, too, have visual disturbances. Some of them ARE "migraine episodes" where small pieces of my vision seem to shimmer and they grow over about an hour. These are always both eyes at the same time. Other times I have complete loss of vision in one eye only, except for a small island in the middle. This is a vascular event which, for no apparant trigger, the central retinal artery to the affected eye constricts.

Hope I can help you.

Diana

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I, too, kept losing my vision when I first got sick and by chance I went to a wal-mart vision center to get new glasses. I had just had my positive TTT and I told the optometrist. He had actually heard of NCS and POTS!! I was SO excited! He explained the dry eye problem I was having was probably part of the autonomic problems, and the blurriness, and blackouts.

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Hi Kimberly,

I'm an optometrist with POTS and I may be able to answer your question about your vision.  First, though, can you tell me what you mean by "losing" it?  Does your vision go black?  Is it in one eye or both eyes at the same time?  Or is it small pieces of vision that grow?  How long does it last?  Or do you mean that your vision goes blurry? 

I, too, have visual disturbances.  Some of them ARE "migraine episodes" where small pieces of my vision seem to shimmer and they grow over about an hour. These are always both eyes at the same time.  Other times I have complete loss of vision in one eye only, except for a small island in the middle.  This is a vascular event which, for no apparant trigger, the central retinal artery to the affected eye constricts.

Hope I can help you.

Diana

Diana,

Everything goes black in both eyes for a few seconds (less than 10 seconds). I also have episodes that are milder where I can't see clearly but it isn't distinct floaters either (both eyes). I can feel my eyes pulsating as my vision returns. I guess that is why I thought it was due to blood pressure. During my tilt table test, everything went black and my blood pressure fell to 55/30 something (this was with nitro).

Does migraines go along with POTS? I have just been reading these discussions and noticed a lot of people have listed them on their problem list or dx? I have had floaters before (like sheets of rain) and then got a mild headache. Nothing that required more than advil or tylenol.

Thank you so much for responding. It is so nice to talk with others who have these problems. Please tell me more about your other POTS symptoms.

Thanks again!! :lol:

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Hi kimberley!Welcome

We are clearly two peas in a pod...I get this every day in life, and always from putting my hands behind my shoulders, or from stretching back or up the way, as well as from standing.

It's like sparkles.raining glitter in front of my eyes and then both eyes go completely black.

When I told my opthalmologist he thought I was weird! Couldn't think of a reason for it. But it persists all the time- I can even see little sparkles now wheile I'm typing- but it gets markedly worse durng a POTSy spell.

Good luck in getting it sorted- and if you do find anything out about it, please let me know as I have never been able to find the cause or a treatment to make it go away.

Cheers

P :)

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Hey,I get the sparkles(it is a bit like confetti kind of fun if it wasn't annoying):) which I never saw anyone say they had before. I also get a flash of black or white more black in my peripheal(SP?) backside vision. My phone flashes when there is a call and when this is going on I am constantly checking to see if I have a call. I start to gray out standing but if I sit then that seems to clear. I had a simple serous retinopathy a few years ago that causes a black spot in the middle of my sight, it comes and goes but it does go. Do you guys notice reading problems? I get shadowing and can no longer read my favorite thing! Anyway sorry to run off we haven't had this disscussion in awhile or I missed it. Get thee to a doctor!

Stacey :-)

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Hi Kimberly,

Yes, migraines go along with POTS. It's as if our blood vessels forget how to act, sometimes constricting and sometimes dilating inappropriately.

Yours sure sound like low blood pressure episodes, and migraine episodes. If you get the headache right after, then they are definitely migraine episodes. But usually, the episodes occur without the headache.

It is good that they only last a few seconds. We docs worry about blockages in the arteries if they last longer than that.

Hang in, you are not alone in this!

Diana

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When I black out just a little when I stand up too fast, I quickly tilt my head forward. A licensed practical nurse taught me that trick. If that's not enough, I bend forward at the waist, bracing my hands on my knees or on a table, depending on where I am. If I'm still shaky after that, I sit down and put my head to my knees. Before you stand up, make sure you have room to do these things without bonking your head.

I've had so much practice that I can do all of these maneuvers without thinking about them. I haven't actually fainted in years.

These maneuvers won't work for everyone. One of my doctors couldn't figure out why I don't fall over. One time, he measured my blood pressure while I was standing, and it was 48 over undetectable. I remember watching the mercury column on the gauge keep dropping. I was wondering why it didn't start jiggling with my pulse at around 90 mm Hg. I had tunnel vision, and things were kind of vague and gray, but I could still read the gauge. I could even talk, more or less coherently. Strange.

Helpful hint: Sit up straight and don't cross your legs while you are getting a sitting blood pressure reading. Slouching and crossing my legs boosts my systolic pressure by at least 10 mm Hg, which probably explains why I habitually do those things when I feel bad.

Once I had a migraine scotoma, which was much longer lasting than the visual dimming I get from standing up. It started as a blurry spot in the middle of the visual field in both eyes, and then it got kind of jagged and sparkly. It confirmed my doctor's suspicion that my attacks of vertigo and tinnitus ("the spins" and a whooshing noise) were migrainous, even though I wasn't getting any headaches. Now I get one-sided headaches, but without the special effects. As soon as I feel one coming on, I take an over-the-counter aspirin/tylenol/caffeine product and drink lots of water and take a big dose of sugar. The sugar really seems to help me.

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