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ACsMom

Vision Distortions And Other Stuff...... Part Of Pots/nmh/dysautonomia?

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We are still learning as we go with my daughters diagnosis of POTS/NMH.

I've read that vision disturbances are part of the package. She described walls being distorted for several seconds on an infrequent basis. In a way that sounds like an aura but she has no migraines, headaches. Could this be part of dysautonomia?

In helping my daughter, I am trying to figure out when she needs my help to beat back the symptoms. She can be hypotensive even with laying down. She can get lethargic/down. Could it be dysautonomia? If so, can she reach a point where she is fighting a losing battle to do what she needs to do and then needs intervention? I keep encouraging her to be proactive instead of reactive, to prevent rather than try to fix.

Giving her fluids, a thermotab and a dose of midodrine has helped in a couple of past episodes. I think. At least, she got up and tackled school work not long after.

EDS, POTS, NMH, 17, senior. What a combination to sort out.

Your experiences? Words of wisdom?

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Yep...part of the package (at least for me). My vision can be great one moment, crappy the next. Exercise and acceptance of these quirky/transient symptoms has helped me the most.

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So, is that vision flash a sign that she needs to drink, take her med, take some salt? Or does it happen if you are doing everything textbook perfect? Just learning what she can do something about and what she just has to ride out.

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I have vision issues no matter what I am doing. It differs throughout the day from having nothing, to a spot in my vision, to blurred vision. When I am extremely symptamatic, I get the bottom half of my vision is completely blurred. I wish I had words or advise for it but I have yet to learn how to fix it. :) stay positive.

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Blurred vision is part of dysautonomia along with many other symptoms. I deal with it everyday. Being proactive with treatment modalities is 1st and foremost. Everyone on here will tell you that it will be trial and error to finding what works and doesn't work with Dysautonomia. If fluids work-is she drinking power drinks like Gatorade to give her the electrolytes (sodium) she needs. She needs to take in at least 1/2 to 1/3 of them daily balancing with other fluids like water, juices, etc...Salt everything which will also increase her blood pressure along with the Thermotabs. Take the Midodrine as it definitely increases the blood pressure, but be aware of the usual side effects of feeling cold, hair/head itching, tingling/skin crawling, etc...that is how I know it is working. There are many other things that work too. Taking a multi-vitamin daily, extra B complex vitamins, Vitamin D if she doesn't get enough sun light, semi-warm (cool) showers, support hose, etc...You just need to stay positive for/with her. I have twin 17yr old daughters and know it is a challenge with getting teenagers to do anything. Good luck and pm me if you want to talk. :)

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Thank you. She does a Poweraide Zero 1x/day, 2 Thermotabs /meal and 4 doses of midodrine/day plus more salty foods and a propel or 2 + V-8, water, etc. She recently added a B complex vitamin. I just spoke to her physical therapist and he DID say that being consistent with the midodrine is very important. Consistency isn't there yet. It is something that she still need to take ownership of. Taking anything *4* times a day is a hassle and easy to forget. Any tips?

Her vision issue wasn't blurred vision but distorted... the walls were angled and once it was bowed outward.

When you or your kids are symptomatic, are you/they ever non-responsive.... not comatose but you just don't give/get an answer (or one more than a shrug, an "I don't know", etc.) ? When I don't get an answer to questions on what is going on to determine if and how to help her.. It's as though she can't figure out how to answer me. Or it takes too much effort.

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Timely discussion since my 17 year old is home today and probably tomorrow because of increased sensitivity to light/sound, auras, a bit nauseous, and an ongoing dull headache. She had migraines that we know of since age 4. These were usually painless, accompanied by vomiting, and auras. At that time we could usually trace the reaction to a higher naturally occurring high salicylate food. When she went dye/preservative free and low salicylate she had fewer migraines. We also think she started having POTS symptoms around age 7 and then the migraines increased again. She wore Irlen lenses (colored lenses) and her visual perceptual issues and migraines were not frequent if she wore the lenses all the time. When POTS symptoms started escalating again in high school the migraines increased. LIke your daughter my daughter has very low blood pressure. She takes fludrocort to help increase the pressure but many of her POTS symptoms including migraine activity went away with adding a beta blocker to her already drinking 12 cups a water/day, lots of salt, and exercising 1/2 hour daily/ 6 days a week. We have no idea what set off the migraine activity this time but her blood pressure is 99/54 while sitting and her heart rate is at 54. I had her increase her fludrocort by 1/2 a tablet today since she usually only take 1/2 tab. She rarely is out of school but knew that being in a quiet, dimly lit room was needed. She told me today that having such wild visual disturbances has probably added to her descriptive writing in her stories. This time of year pollen levels set off migraines for some people. My daughter treats her allergies with homeopathic remedies and zyrtec at night. She does notice that taking her homeopathic remedies help lessen the migraine. Also she takes ibuprophen when the auras start even if she doesn't have pain. I saw the mention of increasing electrolytes and just reminded her to put some packets of her Electro-Mix into her water. It can be challenging to sort out just the migraines, let alone the other things going on in the body. Migraines can have many triggers but from reading on here it sounds like they are common with POTS. I get migraines with hormone changes, and neck issues. My oldest daughter had similar triggers to her migraines.

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ACsMom,

My heart goes out to you and your daughter (and everyone out there dealing with POTS). My son is doing well (healthwise) now, but I know what it is like to have a very sick child and what a struggle it is.

In response to your question about being unresponsive when symptomatic... I very often will not feel up to giving a response or the energy for a response when someone asks me how I am - it's not that I don't want to respond, but it's soo difficult to try to explain how you feel (even if you can verballize it) and you know it will take a huge amount of effort to get it across. My husband used to get frustrated with this because he wanted specifics and all I would say is "I feel terrible". You do also getting tired of saying how awful you feel. One day my husband asked me how I was feeling and I said "oh, fine". He then said "are you just saying 'fine' because you don't have the energy to tell me how you really feel". {Breakthrough ;) }

You could maybe try using the Scale of 1-10 to describe how she is feeling overall. This requires much less effort on her part, but also can give the overall picture of how she is feeling at a given time. You might want to start with a scale of "minus 5 to plus 5" that helps to let her know that you understand that she feels terrible and sometimes that number will be in the minuses and sometimes they wont.

Or it might be easier for her to answer if you ask her about specific symptoms that she usually has issues with (i.e. how is your head feeling today? etc).

I definitely agree with you that it is better to be proactive rather than reactive. I keep daily journals of my symptoms; activities; reactions, etc in an effort to figure out patterns, minimize setbacks, etc, but in my experience the regular rules don't seem to apply to POTS. I can do something one day with no ill effects, but another day that same activity could set me back.

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Vision disturbances are very common. To be honest, I have a binocular defect that was caused by a virus that started all my symptoms. Don't give up though, because I finally was able to get some good contacts, after many years of not being able to see properly. It is true that vision waxes and wanes, and some days are better than others. If she has an eye appointment, and her vision is not good on that day, cancel the appointment and make another. I also have constant tearing, which always gives me blurry vision. This last eye doctor was so patient with me, and let me blot my eyes, so that I could see as well as to be expected. I'm so excited that I can see the leaves on the trees again!! :) Try to be positive, and know that some days are better than others!!

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you can have auras without headaches. i get them. i see what looks like lightning, and blind spots. this usually lasts about 30 minutes. but besides the auras i have blurry vision that comes and goes, lots of floaters, and when looking at the sky i see what looks like rapidly moving, or blinking maybe tiny pin point sparks of light, and tv like snow at night.

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Fwiw, I don't think it's a good idea to chalk up all of our symptoms to dysautonomia. This won't help us eliminate other possible causes.

I'm not sure of everything that can cause vision problems but I know that visual disturbances are common in hypoglycemia

and migraines. I also had this with my ataxia which was probably from gluten. I just treated these by eliminating migraine triggers and blood glucose spikes.

Certain drugs can cause visual problems so check the side effects.

Gettin older ain't as easy to treat .. Lol ..

Tc .. D

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