Vision Problems?

[mngirl]

The past 4 weeks or so I can tell that my vision is getting worse. This weekend it was to the point that I actually thought I was going to lose my vision completely. The POTS was bad this weekend on top of it all too. I was running errands with my 6 year old and had to ask him to repeat our home phone number because if mommy fell to the floor he needed to call daddy at home. How awful is that that I had to even ask that of my 6 yr old?!?

Anyway...I just got new glasses in April, they were great when I got them...but I would bet anything if I went back for an exam today, my prescription would be completely different it has changed so much. I told my dr about it today and he is VERY concerned. He said that if it were related to a headache it would go away once the headache did...but it is constant. Today I had MAJOR pain behind my right eye, so much so that during my Lidocaine infusion we had to shut off the lights for the whole treatment, the light was too painful. My dr is calling the opthomologist tomorrow to get me in asap. He said your vision cannot change that quickly unless there was something wrong. So he wants to confirm that there are no tumors or anything in my eye. Then they may also do another MRI to confirm that there are no tumors or anything else causing it.

Has anyone else had any issues with their vision? I am totally scared about the whole thing. Up until the last year or so, my vision has basically been 20/20...now this. Today all I could see out of my right eye was blur. I am not sure that I can deal with anything else right now.

Please keep your fingers crossed that it is nothing serious.

Thanks.

Lisa

[Sunfish]

lisa -

i agree that you need to get to the doc. personally i have vision issues but they come and go. for me it's not with headaches but with other symptoms & has to do with my pupils contracting/dilating inappropriately. it also takes me longer than "normal" to change what i'm looking at, i.e. to focus, but it's the norm for me & has been for a long time so i don't notice it anymore. when i'm super symptomatic BP-wise though i have issues with blurred vision.

i think the progression you've noticed, like your doc has said, means the doc is in order. i'm sure it is scary for you so hope that you can get in soon & that there are answers to be found.

hang in there,

:-)melissa

[dizzygirl]

hello

I have a great deal of visual problems too. we believe that it is associated with the pots and low BP.

I get alot of floaters, blurred vision, diming, tunnel vision.. and alot of pain and pressure behind my right eye.

Most days I cannot see straight or foucs on anything.. it is pretty constant these visual problems..

Sometimes headaches makes these problems worse, but 9 times out of 10, there is no headache.. just screwey vision!!!!!

I am sorry I dont have much to offer you in regards to relief of these symptoms.

I have days where i sit in total darkness, because i cant stand any light or sound.. my eyes are very sensitive to light..i wear sunglasses even if it is cloudy outside! LOL

I wish you the best of luck..

let us know how it goes with the doctor.

[Poohbear]

I agree that it's something you definitely need to have checked out.

I can also say though that I went through about a six month period where my vision quickly and drastically changed and I had pain like you are describing and it did not go away. For me, we eventually figured out it was migraine aura related even though most of the time I wasn't getting the headaches. For me the problem is largely migraine although it's not a typical migraine pattern. It may help you to keep in mind that it's the brain that sends messages to your eyes to get them to focus and work properly and since our brains don't work right sometimes the eyes can be impacted in a major way.

I've had to get two prescriptions for my glasses and I wear whichever works best on a given day. It's unbelievable to most Dr's (especially Opthomologist and Optometrist because most of them have NO clue about Dysautonomias.) My prescriptions are VERY different from each other.

In terms of your son, try not to feel bad about asking him to repeat the number. Try to be gentle and calm when you talk to him about it so you can hopefully minimize any fear he may feel but he's old enough to talk to him about it and rehearse what to do. It's a good thing and teach him how to call 911 too because you never know when he may need to call for you, himself or anyone else.

Hope you get some help and answers with the vision problems

[yogini]

Hi,

I would definitely get it checked out. But I think visual disturbances are pretty common with POTS. I have had vitreous floaters, graying out and blurriness. When I had my vision tested with these symptoms, it was normal. The symptoms have gotten better for me. I used to have them every day, but now it's just some days. Salt, compression hose and fluids have helped me for this.

Good luck,

Rita

[Miriam Poorman-Knox]

I had almost a siilar situation, did lose my vision in one eye temporarily. Went to the ER and they did CAt scan wanted to admit me, but no private rooms gotta keep that temp down!!!!!! My husband was with me and not on call so we came home. I went in to see the genetic eye Dr. then whe ACTUALLY kNOws ABOUT POTS and they did alot of tests. They think f"for me" that I had a mini occular TIA that resolved. My vision is vastly different, and Dr. Goren gave me a new prescription-just got new ones last summer!!!!. They said that they take vision very seriously and that we/I should never wait, get seen immediately eveen if its ER. I havn't ordered my new glasses yet the air quality is bad and I can't handle it. My opthamologist believes that this is due to pots. So now it q/6mos. Which is ok because he knows about it. Miriam

[Laura]

Hi Lisa! I had vision problems with my right eye a couple years back. Lost vision, pain and increased pressure behind my eye. I went in and they thought either a tumor or blood clot. I had a full range of testing by an opthomologist (he found increased pressure from behind my eye), then was schedualed for MRI and an appointment with a neurologist. I had to wait three months for the MRI and another three to see the neurologist for the results. By that time it had pretty well resolved- I had some worsening of the vision to the right eye but nothing major. They told me it must have been a clot and that it resorbed itself. I know how awfully worried I was the whole time I was waiting. (I am sure you will get things addressed much sooner, I am in Canada and had to go on the waiting list for MRI and neurologist) I am hoping that it is nothing serious for you, and that you will be seen quickly! Take care! Laura

[mngirl]

Laura -

I saw the opthomologist today and she didn't see anything. I do however have an ultrasound tomorrow to make sure that I do not have a blood clot causing the problem. She also thinks that I need to see a cardiologist. I also sae my chiropractor this morning who said that my neck was incredibly awful today (it felt like someone was stabbing me through all the stretches he was doing). He asked if anyone ever examined me for a herniated disc in my neck. So I called my dr office right afterwards to ask if a neck MRI might be a next step. I certainly cannot live like this.

I also have another Lidocaine infusion on Fri and will get to talk with my dr again then to see what he has to say. We are also going to talk about inserting a port so I do not have to be poked for 2 IVs a week for the next 6 months or so.

Anyway...I hope that this gets better before it gets worse. I can't imagine not being able to see.

~Lisa

Hi Lisa!  I had vision problems with my right eye a couple years back.  Lost vision, pain and increased pressure behind my eye.  I went in and they thought either  a tumor or blood clot.  I had a full range of testing by an opthomologist (he found increased pressure from behind my eye), then was schedualed for MRI and an appointment with a neurologist.  I had to wait three months for the MRI and another three to see the neurologist for the results.  By that time it had pretty well resolved- I had some worsening of the vision to the right eye but nothing major.  They told me it must have been a clot and that it resorbed itself.  I know how awfully worried I was the whole time I was waiting.  (I am sure you will get things addressed much sooner, I am in Canada and had to go on the waiting list for MRI and neurologist)  I am hoping that it is nothing serious for you, and that you will be seen quickly!  Take care!  Laura

<{POST_SNAPBACK}>

[DancingLight]

lisa,

has MS been ruled out??? maybe this sounds like a random question...but the timing of your post is just too weird...b/c just today my mom was talking to a woman about her sister...her sister has MS and it took over 2 1/2 years to figure it out...and finally, her opthamologist figured it out b/c she had to get new glasses so quickly and had such quick changes in her vision. i am not trying to be an alarmist...it just seemed strange that i logged on and saw your post and had just had this conversation with my mom today!

as for vision problems, i too have a lot of trouble focusing and i cannot focus to read and i feel like i have to fight so hard to stay focused...things are always going blurry. but, for me, it's worse with my worse POTS symptoms. it does not manifest as actually needing NEW glasses and a new script.

okay, some serious run-on sentences here...my concentration stinks along with my focus! sorry!

hope you find some answers soon...and a little belated...but welcome here!

emily

[DancingLight]

p.s. could you tell me more about your lidocaine infusions???? i was just talking about these with my doctor. what do you take them for? did you have trouble getting them covered? etc...THANKS!!!! emily

[mngirl]

Today I went in to the dr today and had an ultrasound done on both sides of my neck to make sure that I do not have a blood clot causing the vision stuff. Afterwards I was feeling so awful (my neck, shoulder and back were KILLING me) I went and asked my dr to see me and inject those spots with something to reduce the pain. I LOVE my dr because he said no problem. Then his nurse was so nice and asked me if I wanted to wait in the waiting room or if I wanted to go lay down while I waited. So I asked if I could go lay down, and she put me in a room that was ice cold. So instead, she went and got the leather recliner and put it in a nice room, where I got to recline and close my eyes while I waited.

My dr came in and felt so bad...we talked about what was going on. I think we are going to do a MRI of my neck next week - we never did one since I hit my head - only a MRI and CT scan of my head. My chiro thinks I may have the herniated disc in my neck and today that is EXACTLY what it felt like. So he injected my neck/shoulder and back with some pain killer stuff. Talk about painful shots - I barely made it through. Then I went back to work and it got worse. He must have hit a nerve because I couldn't move my head or arm and the pain went down my arm and it even hurt to take a breath. I sat there and cried...it took a bit but at least it settled down a bit. It actually still hurts tonight. I am going in for an infusion on Fri morning so we are going to talk some more.

We also took away my evening dose of Nadolol in hopes my bloodpressure would go up. It has been pretty low lately. He said that if the dizzys don't get any worse, that he is going to put me on Ritalin, which he hopes may help. The past 2 nights I wasn't able to tell if not taking the Nadolol made any difference because I felt so awful and came home and went straight to bed. Well, tonight I was up and cleaning the house for company that is coming and man, I can tell I haven't taken it. I am now parked in the chair it is so bad. So, I don't think what he has planned is going to work!

Oh...and my dr thinks that my vision problem is due to the autonomic problems caused by POTS! He thinks that it is causing the lens of my eye to spasm which causes the vision problem. If that is the case, then there is nothing they can do about it, but try to get the POT under better control - and that seems to be the problem, getting that under control.

So....life ***** right now because I don;t know what to do anymore and I am in such pain, dizzy or nauseated ALL the time. I can't take this anymore...this just isn't how a person who is 32 should be living!

ARRGGHHHH!!!!!!!!!!

EMILY - Funny you should ask about MS...I was just talking to someone else about it and I was also commenting to her that it is really odd that all of a sudden I am seeing a bunch of stuff about MS - particularly about the visions stuff (and I haven't been searching it out either) - just so ODD! Everything I read about it makes it sound like it, but I know that when they were first trying to figure out what has going on they did a MRI to see if it was MS and I was told the MRI would tell them if it was or not. So, I think I am going to reask about it, just to bring it up again.

About the Lidocaine infusions, I had an ulnar nerve decompression during which the surgeon cut another nerve to move the ulnar nerve. She didn't think that it was such a big deal given the nerve was a small one - Well, she was WRONG! I basically traded one pain for another. Right now I have a constant burn going up the back of my right arm, and even where the nerve used to be is painful. The bas thing is that trying to do anything physical with my arm causes MAJOR pain and it shouldn't. And guess what...I am starting to have the SAME problem in my OTHER arm! Great eh? Well, we tried what seems like ALL the medications to try to quiet the nerves down, nothing worked. My dr just started with one patient at that time giving them Lidocaine by IV. So, I thought I have nothing to lose so we gave it a go.

My first infusion was 8 hours long! They gave me 800 mg of Lidocaine. About 2/3 or the way through the burning in my arm was GONE! I was able to take off my Lidocaine patch and everything was fine, it was amazing! Although if you pushed on the side of my arm it still hurt, but hey...it was a start. The only other bad thing was I started having reactions to the Lidocaine. The beta blockers make it stay in your system longer than normal and almost cause an overdose in your system. I started having chest pains and breathing problems during the treatment. If I wait too long between treatments I have them. If I keep my treatments at the right spacing, I don't have any reactions and it is great. The other problem I am having right now too is that my kidneys are having problems during the treatment too. It causes MAJOR pain, so much so they have to stop the infusion for a bit to let me recover a little.

I have not had any problems with my insurance covering it. I have 2 treatments a week (now for about 4 hours each) and I have been going for about 3 months now. My dr thinks that it is going to be at least another 6 months to a year before my body starts to forget about the circuit of pain it is producing. My treatments cost anywhere from $300-$800 per treatment! So it is NOT cheap. There is a pill form, called Mexcilitine (sp?). We tried that last week in hopes that I could forget having to go into the clinic twice a week spending 8 hours a week there...but nope...the pills cause AWFUL stomach cramps, diarehhia, intense chest pain and nausea. So we had to stop that...I was only taking 50 mg of it too, which is NOTHING considering each Lidocaine infusion is 300 mg.

It is the ONLY thing that is working for the pain in my arm, I am just concerned about the long term side effects of the Lidocaine - it can cause Kidney/Liver problems. I am already seeing kidney problems, I just don;t want to get to the point of needing new ones. I have Addison's Disease on top of all this so getting sick is a scary thing...It takes a long time to get over anything.

So, if you need more info on the Lidocaine infusions, let me know. I know that they used to do them in the ICU at the hospital because of the seriousness of them. My clinic was just approved to do them at the clinic. But when I go, one nurse is dedicated to me the whole time (generally a cardiologist nurse), just in case something happens. They hook you up to a heart monitor, a thing that measures your oxygen levels, one for your blood pressure too. During treatments, my pulse has been dropping to the low 40s...they are very concerned and are afriad that it is going to head into the 20s and 30s. It is a little scary when you can feel it in your chest and then all of the alarms start going off!

But...what can you do? Let me know if you need anymore info...I'll willing to tell you anything about the procedure!

~Lisa

Anyway...I'll update when I can!

~Lisa

[DancingLight]

Lisa,

Thank you very, very much for typing out all of that for me. I know how much effort it can take to type stuff out and think it all through!

I agree that it would be a good idea to get the MS thing checked out again. I'm not a doctor...but when things keep popping up at me (especially like you said...you haven't been searching) I take it as a sign to 'pay attention' to the timing of it all...

I really appreciate you explaining the stuff about your lidocaine infusions. I am not quite there yet. But, talk about timing...I had never even heard of them until my doctor mentioned them last week! So your post just blew me away. I was glad to hear how they did and didn't work for you. Our managment of pain in medicine sure has a long way to go. It scares me, b/c like you I am young (29) and I know that this will be a continuous struggle.

I have 'restricted nerves in the spinal cord and neck area' (probably due to cervical spinal stenosis). First we are going to try Topomax this next week. But he also mentioned the med that you just tried that converts to lidocaine. I'm sorry it didn't work out for you...b/c boy, that would have been nicer than the IV's huh? Scary how there is alwyays such a trade off too...the IV's help the pain, but hurt the liver and kidneys.

Anyway, I am rambling and must 'hit the hay'...but, the way this whole lidocaine thing started for me was that a couple of weeks ago I got my ingrown toenails removed and thye give you an injection of lidocaine in your toes (only 3 ccs per toe) and 20 min. after the injection I was feeling GREAT...like, no pain all the sudden, no pounding heart, etc. etc. I was like, okay, what's this all about. For two days, I had so much less pain. I thought it was all the Tylenol I was taking for my toes! Then, my doctor mentioned lidocaine IVs and I put two and two together...

I cannot believe that teeny amount did anything, considering how much you are getting per treatment. We may consider the IV's down the line, but first the Topomax, then maybe Lidocaine patches or the oral form. I have also been having great luck with Xanax...which I know is hugely controversial, esp. on this forum, but it has been making a HUGE difference and I do not function hardly so we are getting a bit desperate...

I have rambled on long enough...esp. since it is probably hard for you to read right now! Sorry! I would like to keep you in mind to email you in the future if I do pursue the IVs...if that would be okay with you. So, you'd better stick around on the board, k? he-he.

Later alligator, and again...thanks. I have logged on several times meaning to reply to your post and get distracted by the 'newer posts'...it's amazing how quickly I get distracted and lose track of what I am SUPPOSED to be doing!

Emily

[Sunfish]

lisa -

sorry to hear that you're still having a rough time of it but glad to hear that your doc seems to at least be compassionate & willing to do what he can both in the moment & in terms of longer term solutions.

obviously we're all different, but i also wanted to let you know that concerta, essentially an extended-release version of ritalin, did wonders for me for several years. i was prescribed it for reasons similar to your description....low BP, dizziness, high HR. so if you do go this route know that it at least has the potential of being a GREAT help. i am not taking it now as it didn't seem to be doing it's magic for me anymore, but i know that it was a huge help for me for years & for that am super thankful.

in regard to having the MRI on your neck, it sounds like something worth pursuing since you mentioned the fall. i had a neck injury due to a fall down a flight of stairs & i didn't even realize how much pain i was in until the problem was corrected. by that time i also had a lot of shooting pains & numbness too, but if you did do something to your neck it's at least good to know as it can help direct you in terms of where to head treatment wise.

hang in there & let us know how things go with the MRI...

:-)melissa