visual issues

[psychologystudent800]

I was just wondering.. does anyone have visual disturbances?

I can not seem to focus my eyes anymore in depth.. this is really annoying.. I also have blurry vision.. is this neuropathy? or does it go away once u recover?

[kkrylee]

My daughter's problems started with near syncope and transient vision loss.  Her 1st episode: she was blind for 8- 10 mins (at age 12).  Since then (5 yrs ago) she has total vision loss 15-20 times a day every day, generally when walking, but it lasts less than a minute each time.  

1 yr ago, started with all kinds of neurological issues, constant nausea, constant headache pressure at base of skull, body temp regulation problems, lots of gastric reflex problems, Bowel issues, fatigue, possible absence seizures, orthostatic hypostension, POTS, etc.  Her vision will get blurry and last for hrs, or have spots that lasts for mins, or have temporary peripheral vision loss.  

So far she is not on meds because she has just been diagnosed with dysautonomia. We are waiting to see a doctor that knows more about this to start treating her.

[ritambowers]

I know this post was a long time ago.  What happened with your daughter since diagnosis?  I have an 8 year old daughter who has the same symptoms.  Add on ringing in her ears, celiac disease and hemophilia C.  Not even one doctor of the many we have seen have mentioned dysautonomia.  My daughter's transient vision loss lasts 5 seconds or so and happens 10-50 times per day...it was consistent daily from January through April then it started being a lot less with very few over the summer.  Keeping fingers crossed it doesn't come back in full swing but worried that it will and we still won't have answers.  

[kkrylee]

It is such as long frustrating process, I know what you are dealing with. There are more and more doctors who are now familiar with POTS, a form of dysautonomia that my daughter and son have. My daughter was finally tested at UT Southwestern in Dallas (an autonomic clinic) when she was 17 and officially given a diagnosis of POTS. POTS is really a symptom of something else. It was when my son at the same age of 12 started with the blindness episodes too that we went to a geneticist and they both have Ehlers Danlos Hypermobility which causes their POTS. This disease has caused many other medical issues in each of them and there is no cure. The good news is that my daughter's POTS symptoms did improve dramatically on their own when she was 26 -27 yrs old. She still has a lot to deal with but the blind episodes stopped then. Her monthly trips to the ER for IV Solutions are no longer needed. That was one of the things that helped her the most with POTS. Their body gets dehydrated so easily creating complete exhaustion requiring fluids. The IV's were like a miracle drug when she would get to that point which was often once a month. My son is 16 yrs old and still has the blind episodes. His Neuro treats him with Fludrocortisone and Propranolol. They do some good but don't stop the episodes. The IV solutions don't seem to help him.  He is home schooled. My daughter had to give up her lifelong dreams of dancing and becoming a Pediatric Neurologist. There are some people like my daughter who have the POTS go away once they are in their 20's. Some earlier than my daughter which I think is due to finishing puberty. My daughter's puberty lasted a lot longer than most girls.  The best thing that I found is to know what is causing the POTS, treat with a combination of medications and maybe the IV Saline solutions will help. The cardiologist is the one who would ordered the IV solutions or when needed urgently she would go to the ER. I wish I had better news but the good thing is that more and more doctors are now familiar with POTS (dysautonomia) so they don't all say that our children must be depressed. Find a cardiologist and neurologist who both know about POTS. My son's Neuro understands POTS but the treatments offer little help although each POTS patient is different. You should also get her evaluated for sweating. My daughter's QSART test at the autonomic clinic showed Autonomic Neuropathy which somewhat affected her ability to sweat. My son cannot sweat due to POTS which prevents him from being in the heat as his body overheats because he can't sweat and causes heat exhaustion very quickly.  I guess a summation: 1) get tested at an autonomic clinic, 2) find out the underlining disease that may be causing POTS 3) find Neuro and Cardio doctors who know POTS (for my son we see only the Neuro, the Cardio doctors have been no help), 4) try IV Saline solutions, 5) test ability to sweat, 6) know that she may outgrow this, 7) more research is continually being done in this field, keep searching online for new updates (Dynainc.org has great info) 8) request that the school make the needed accomodations in order for her to complete schoolwork (I think Dynainc.org has info on what school accomodations may be needed for POTS patients), 9) don't rule out psycho therapy. That is NOT the cause of their medical issues but the medical issues challenge them to a point where a therapist may be able to help them deal with those challenges, 10) most important: never give up fighting and researching her issues, don't let doctors tell her that "she must be depressed" and that is the cause of her varied symptoms.) My daughter (now 29 yrs old) has severe issues from the Ehlers Danlos that challenge her daily but she did get married last April and has been working a full time job for the last 7 months which is a huge accomplishment. I will pray for you both. I know the pain of watching your children go through this. Contact me anytime kkrylee3 at a yahoo address. God bless.

[psychologystudent800]

hey halbashes

I can notice a change in it.. like yesterday I made an exam and my vision was fine at the beginning but after 3 hours of concentration I looked up and couldn't see a thing anymore.. it was all blurry... so my guess and other guys guesses are or.. it's because of the cerebral hypoperfusion or it's from the inability to focus the pupils because of autonomic dysfunction.. it's really annoying..

by the way my vision also darkens sometimes when I stand up and then I  go into presyncope... the good thing is I feel it coming and I can sit down before I pass out :)

[halbashes]

Are the visual symptoms constant?  My vision sometimes darkens before I pass out, but it's not something I have to deal with constantly.  It could be autonomic, but I would ask a doctor before I made that assumption.

[psychologystudent800]

I've had it all along before I took medication... :S

I always see blurry vision among the symptoms of autonomic disfunction.. so that calms me down a bit.. but still.. it's annoying :)

[halbashes]

Are you on any medication that could possibly cause these side effects?