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Dysautonomia is a word I loath


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Hello. I have a 17 year old daughter who was finally diagnosed with Dysautonomia, POTS and now looking into EDS, which I know she has.  As well as my other two children.  It took six years to even get here.  Where is that exactly?? no where.  A name..thats all we have, is a name.  Add more salt to her diet, if she could eat that would be great.  More water, if water didn't make her IBS act up that would be swell.  So many things, so many issues.  Every symptom causes doctors to just nod.  She doesn't look sick, she doesn't act sick...they say...they say, well sick kids don't smile..really?? how about chronic kids who have to smile through the pain to make it through their day.  Yes, shes beautiful, but she is sick.  From vertigo, visual snow, eye tracking issues, nauseous, head ice pick pain, body aches, muscle weakness, cold, hot, chills, tremors, trouble swallowing, trouble standing too long.  SO many more.  There is nothing I can do to help her..take a med they say, YES, lets take a pill that is going to give you ALL that you already have as a side effect.  Lets take a blood pressure med to try to help the inflammation but you might pass out if you stand up to fast, okay sure, she already has to sit on her bed for ten minutes or more in the morning before she can get up.  The list of things go on and on.  I asked her, if there was one symptom that could be cured, which one would it be..VISUAL SNOW she said.  if she could just see normal for once that would be great.  So many doctors and specialist in a short period of time, and no answer.  Neuro opthomologist says her eyes are fine..no dr can tell my WHY she has this visual snow.  she said she has always had it and thought everyone did.  I know that EDS can cause issues and maybe this is one of them.  From a dancer all her life to barely making it to her senior year, is not what I envisioned for her life.  But, she is a star player.  A fighter through and through.  She amazes me at her strength.  I am glad I found this forum..to wright and maybe share our story.  I am still on the path of finding help for her, and for my other children.  I hope that maybe through this I can help another parent out there.  In my small town, I have found at least three other young girls like my daughter. Six years ago, it was just us..I thought she was an enigma, as the doctors made me feel. But the last few months, I have found that she goes to school, when she can, with another POTSie and it makes her feel a little more normal.  God bless these children and parents battling this head on.

 

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Hi Momto! Welcome to DINET, I'm glad you found us! Being a mom myself I realize it must be so tough to see your "babies" struggle. So far it seems my boys are okay (though one of them has had fainting and hypermobility issues) but there are more moms here fighting to find the best treatment for their kids. Hope they will chime in to share stories! In the meantime: stay strong, there will be answers!

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Hi Momto, its interesting you mentioned the visual snow as that was one of my first symptoms. I also have palinopsia (trails after moving objects), negative afterimages, as well as depersonalization disorder. My visual symptoms are most likely linked to my depersonalization disorder since they are very common in that disorder, however I also have a strong history of migraine which I was told may also be linked but, as I'm sure it is with your daughter, the visual snow for me is always there whether my migraines are acting up or not.

There are no known treatments for visual snow and everyone responds to medications differently. For me amitriptyline has been the only thing that helped, and it basically brought it down to lower levels to where it was more like background noise than an actual visual impediment, it also was the only medication to stop my migraine headaches. I'm on a pretty low does because the higher doses actual can cause orthostatic hypotension. That being said I still have all the other visual stuff like negative afterimages, trails after objects, it takes longer for my eyes to transition from a dark room to a light room, and feeling overstimulated visually in really bright environments.

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Hello and welcome to the forum. I know it must be hard for your daughter and also yourself to see what she goes through. I have EDS/POTS/MCAS and related conditions and it has taken me decades to get any proper diagnoses. The doctors haven't really got much of a clue and POTS meds do vary so much. I know Ivabradine can give people visual issues, but didn't with me. I do have tracking issues, eye pain, glaucoma symptoms, eye pressure problems, night blindness, light sensitivity, slow pupillary response etc. The eye pain has lessened since I have been on the low histamine/low inflammatory diet. It has helped so much with the IBS and gastroparesis. 

I hope your daughter gets some help and relief from her symptoms. The best things I do to help are some low impact exercise, mainly recumbent bike, the massive change in diet and relaxation through meditation. 

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Hi!

I am sorry to hear about your daughter. I too, was diagnosed with a rare form of dysautonomia when I was around 18. It's definitely hard when 'you look so healthy' but little does anyone know, how you really feel.. or what you go through on a regular basis.

It takes a lot of time to connect with the right doctors, and begin the right treatments to 'get you back on track'. Still, to this day, it sometimes seems like I am on a continous uphill battle.. but it does get better.

Feel free to send me a message if you want to talk more. 

Best wishes to you and your daughter <3 

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