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Loss of vision


Dizzy Dame
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Hey guys,

About ten minutes ago I had total vision loss when I sat down on the toilet. I sat down and suddenly (as I was sitting) my heart began to beat very hard, but not quickly in my throat. I suddenly had a splitting headache, and then everything went black. I felt like I was falling forward, but I don't think I was. This was completely different from when I've greyed out: I didn't feel like I was fainting at all.

My vision was only gone for about a second (although it felt like an hour), then it came back with my heart beats, but went out again between beats (it was as though someone was flipping the lights on and off in time with my pulse). This continued for about thirty seconds, and slowly faded, until it was unnoticeable, at the same time my heart went back to "normal" where I couldn't feel the beat in my chest or neck.

I'm not currently taking any medications that would do this. I also usually have low bp, the highest it's ever been was 130/80.

I'm really worried. Have any of you ever had something like this happen to you? Have you ever heard of anything like this happening?

I don't want to go to the ER because I know they'll tell me I just fainted or something and won't take me seriously, although if it happens again tonight I'm going to have to.

Thanks, and sorry for the long post,

Lauren

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Hi sorry i am not sure if i have experienced what you are experienceing ... i tend to get vision loss sometimes ... at random times like while i am walking down the street yet i think it is due to a faint like reaction. I am not sure about the heart beating or sudden splitting headache you experienced. Sometimes sudden blood pressure loss does make my head hurt.

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Hi Dizzy,

I don't really know what to say but I do hope you are feeling better today and I hope you called your dr. and mentioned this to him/her just in case. Did it feel like your heart was racing? Possibly it was too fast and not enough blood was getting to your brain?

Please let us know how you are doing now.

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Dizzy--You must get this checked out immediately. Ihsd slmost exactly the same thing. I waited a couple days..........callled told me to go IMMEDIATELY to the ER I had a TIA mini stroke) in my L eye. Fortunately this was able t be resolved and My vision can be better w/ new glasses. Pleeasee get it checked out.Miriam

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Just to offer some words of reassurance from my own experience- I've had this happen to me several times. It happens to me almost daily when I'm crashing--and I've been told that it's just part of the POTS thing.

I hope you get it sorted out and find out what caused it.

I think for me it's just another little addition from POTS, coming up to say "hi" :lol:

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I just wanted to add a me too to the mix.. and agree w/persephone.. it may very well be a potsy thing. it happens to me alot.. sometime multiple times aday.. and usually happens during a bad potsy spell or when I am on the verge of a bad migraine..

its always best to go to the doc.. and get checked out if it is something new for you htough...

I hope that you feel better.:lol:

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Lauren, I'm definitely glad you are getting this checked out ASAP. My son and I have a lot of visual disturbances, but your episode sounds beyond extreme. Good luck at your doc visit. I hope it's good news and can easily be treated. Please let us know the outcome.

Melly

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Hey guys,

Thanks for the support. I went to see my doctor (well, she's my doctor while I'm in GA) and she said it probably had to do with my blood pressure, although she didn't seem convinced. She said if it happens again to go to the ER. I asked her if there was any chance I'd had a mini stroke, and she said it wasn't likely.

I hope she's right. She's a new doctor to me, so I haven't yet learned how thorough she is. Oh well...

- Lauren

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Sorry to be so late but I have to give you two possibilitites: migraine with visual aura and TIA. TIA might not be likely as your doctor stated but they DO happen- they happened to me and I was in my late twenties. It was related to the BP and erratic pulse. Don't let a doctor poo-poo this- find out and don't take a brush off.

Carmen

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Guest Finrussak

Great advice to not ignore this!!! I'd see a neurologist to rule out TIA's as YES they can happen to young persons, especially with a quirky history and unfortunately its not taken seriously enough by Drs when they see the age. Also it may be worth going to a cardiovascular specialist to see if you have spasms of the carotids...I have in the past had similar episodes, seemingly due to a spasm of the main arteries in the neck that supply the head blood. It may also be a spasm of the smaller srteries to the optic nerve. In any case it is absolutely important to check it out to preserve your vision. And if it happens again, Id suggest the ER where the tests can be done at time of symptoms. ( dont fear the tests, MRI and/ or CAT plus ultrasound of blood vessels are all easy)

Good Luck and hope it all turns out to be yet another weird POTsy thing!

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Well, I just got back from the ER. It's funny, right after I wrote my last message, I had another attack within 2 minutes and had to call 911.

It's amazing, the doctor who treated me in the er, his wife has POTS!! B) . He saw my chart and knew right away. He was so helpful and understanding :wub: .

I had a CAT scan and it came back negative. The doc said I probably had an ocular migrane, but that he couldn't be sure. He gave me the number of a friend of his who's a neurologist in town who'se wife also has POTS. Would you believe it?

I swear, it was the most helpful visit to the ER EVER. And it's good to know that I didn't have a TIA.

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Lauren..

I am so glad that you had a great ER experience.. and to have not one but 2 docs w/wives w/ pots.. truly amazing!! I am sorry that you are having vision loss... but at the same time I am glad that you went to the ER on anight when this doc was working.. talk about miracles happening.. ina weird kinda way..

I am glad that you ddint have a TIA... and I hope that you are feeling better..

Keep your chin up... B)

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Well, I just got back from the ER. It's funny, right after I wrote my last message, I had another attack within 2 minutes and had to call 911.

It's amazing, the doctor who treated me in the er, his wife has POTS!! B) . He saw my chart and knew right away. He was so helpful and understanding  :wub: .

I had a CAT scan and it came back negative. The doc said I probably had an ocular migrane, but that he couldn't be sure. He gave me the number of a friend of his who's a neurologist in town who'se wife also has POTS. Would you believe it?

I swear, it was the most helpful visit to the ER EVER. And it's good to know that I didn't have a TIA.

wow! you should make a post about your super ER experience.... i have only read about bad ones on this site :)

Its great when you come across people who have first hand knowledge (apart from a medical degree)

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Sorry to hear about your episoded but what a positive thing to come of it. A clean cat scan, a ER doctor who knows as well as has a spouse with Pots and then for him to know another dr. who understands Pots and has a spouse also with Pots,,wow, what are the odds of just finding someone who knows what the word Pots is let alone all that!

Hoping this starts off a good relationship with a Dr. for you. Please call him and get this checked out for piece of mind B)

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So far, so good! Congrats- let us know what the neurologist has to say. It will be interesting to see a perspective from a neurologist that is personally touched by the disorder. Wow, you just never know when an ER visit will be productive!

Carmen

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Lauren, I'm glad you had a good experience in the ER. Like everybody else, I'm astounded that you met up with a doc who has a wife with POTS. What are the odds of that?! I'm glad it's not TIA, and that you're headed to neurology. I'm going there, too, for migriaine issues. Let us know how you fair.

Melly

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I'm pretty astounded too. The ER doc was sooooooo wonderful, he ordered fluids as soon as he saw my chart ( normally I have to beg for them). He also leveled with me about my new experience being a new symptom of my disorder. I felt like I could trust everything he was saying. I hope the neruologist will be the same way.

Up until now, every doc I've seen has only been guessing at how to help me. It will be so nice to be able to actually TRUST that my doctor is doing what IS right, not just what they're guessing MAY be right. B)

- Lauren

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Funny you say this. Ive had no black out of vision, but my vision keeps bluring and i feel a bit spaced out. Probably due to lack of nutrition as i havnt been eating properly latley. I can be sitting here then all of a sudden my Hearbeat will go mental and my vision blurs. Really mad and very scarey!

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dizzy-

i'm so glad you had such a great experience at the ER(considering you had to go) & hope that the referral to the new neuro works out just as well. i had an involuntary trip to the ER myself today ( was unconscious & woke up on the stretcher....ggggggggrrrrrrrrr) and wish that the doc you saw could have been my doc too!

:) melissa

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Lauren,

I am glad you had everything checked out and are ok. Losing my vision is probably my most frequent symptom with POTS. I constantly lose all vision when I stand up, pull my hair back, reach for things. I go completely black for a few seconds and am constantly bending forward and squatting to regain my vision. I feel like I could fall over at any time. I know exactly how you feel. Hang in there and I hope you feel better!!! :D

Kimberely

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Guest Mary from OH

Lauren-

Glad you had a great experience with ER!! Funny, as I was reading your post, I was going to post about migraines... and then, by the end of reading your posts, I found that it wasn't necessary!! I guess all the right people were put in the right place for you!! How wonderful!!

I hope that you get in touch with an excellent neurologist who SPECIALIZES in treating headaches! This is KEY!! Two great placess to look up drs are :

www.achenet.org

http://headaches.about.com/od/recommendeds..._clinic_ped.htm

It is vital to get an accurate diagnosis and great treatment plan. I have experienced vision loss with my migraines. I have what is known as intractable migraines. My migraines are very severe. The American Headache Association actually doesn't recognize Occular Migraines as a subtype of migraines. This is one reason why you need to see a specialist. They have the most updateed info. Please feel free to email me anytime you have any questions. I wish you the best of luck in treating your new found diagnosis of migraines or some other subtype of headaches.

Please take care of yourself!!

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The loss of vision, everything goes black. Your heart starts pumping extremely fast called tachycardia. Your heart is trying to compensate for the pooling of blood to your lower extremities. In short, your not getting enough blood to your brain... the best thing I have been told to do, which does help me, is to curl up. It makes since with gravity and all. For me this happens more often when I go from lying to standing especially when heat is involved because heat dilates the blood vessels increasing the pooling of blood to the feet causing the heart to have to pump faster and harder. I've always thought this was one of the main problems with POTS. It is very scarey...and I can't say you'll get used to it, but I have. My medications keep this under control for the most part and I experience less frequently than ever.

Do you have times when you sit (and don't black out/loose vision) but your heart races for what appears to be no apparent reason, and it feels like there are books on your chest or glue in your lungs and you can't catch your breath because your heart is beating out of your chest? This is another common problem I have kept under control with my meds.

Toprol XL (for the tachycardia) ProAmatine/Midodrine (for the low BP) and florinef (help retain water) and a high salt diet.

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