Princess Shaffling,

First of all, there is no need for you to leave this forum. It is hard to believe based on what you have described in posts that your daughter does not have some form of dysautonomia mixed in with other things that may be going on as well. In my mind, the fact she likely has autoimmune issues makes the dysautonomia even more likely. The more I read here and elsewhere, the more convinced I am that autoimmune issues are related in many cases of dysautonomia. It seems that ever so often there are autoimmune issues either in the patient and/or in family history. I have no idea what the relation is between the two, but there is no doubt in my mind there is some link. I have two kids with POTS, and autoimmune issues are rampant on the maternal side of my family. There are many others I've read about and compared notes with who share similar history, and I find it very hard to believe that is a coincidence.

I can absolutely relate to the frustration of having a child with a chronic illness for which you cannot find answers or a fix. You just want to make it better and give them back what they are missing. It does turn everything upside down. As a mom, though, you keep searching and fighting to try to help your kid.

I am always struck by how each case of dysautonomia always has some common threads with others but each case is also unique as well. Thus even for the doctors who do have expertise in treating it (or attempting to treat), it is challenging at best and especially with the more severe and acute cases. That doesn't excuse all of those who fight us every step of the way and do more damage than good. There is one thing that every dysautonomia patient does have in common - finding medical professionals who believe and are willing to learn and search for answers and appropriate treatment.

I am so very sorry your daughter is in so much pain. I certainly agree that you have to prioritize and deal with the worst things first.

As for visual issues, yes, most definitely. Both of my kids have various floaters and sparklers in their vision from time to time. My son has them quite often. Both have times when the vision goes blurry as well. Various visual issues seem to quite often be a part of this picture.

Don't give up the search, and I know you won't. As I so often say, you know what you know about your kid and no matter how many dead ends we hit, the search goes on! My heart goes out to all the kids out there who are impacted by forms of dysautonomia and are not believed by anyone, including their parents, and they have no one to search or fight for them. Your daughter is blessed to have you for a mom!

I hope you stick around this forum. It's a great support for anyone dealing with various forms of these conditions regardless of the specific labels as each case is unique. I feel you're in the right place.

My thoughts and prayers are with you.

Thanks to everyone for your words of wisdom and encouragement!!!!

Today started out being a very emotional day for me and yet it seemed to turn around with just one phone call.

You see I have family in Massachusetts who have been doing their research based on an e-mail I sent regarding my daughters condition. Well my uncle called me right at my lowest point and told me he found a doctor who comes highly recommended. He said his name is Dr. Novak. He said he was going to make an appt. to speak with him and show him my e-mail describing all that she is going through.

Not sure if this will result in anything but all I can say is tht God knew I needed a shoulder and he sent me my dearest uncle.

I looked up posts on Dr. Novak and they seem to be promising. At this point I am not sure if it is worth considering until we get her pain under control but knowing that there may be other options and people with her best interest at heart sure is comforting.

Hugs to all!

Becky

Princessshalfling,

I was diagnosed with POTS in March 2005 I was 31 at the time! I had a tilt table test that is how I found out. I got POTS after having the upper respiratory flu and hemorging period during the flu. I am still not sure if it was the conbination of the too together! But the blood loss may be a cause of POTS,having low blood volume! That has weighed heavy on my mind since I have had this.

Hi Becky: I am Highland Lass: I have been dealing with dysaut & OH for many, many years. The black webs and tiny gnats that I see are caused by not enough blood flow to my brain. I am sure of this because in my case they are gone when I wake up after a good nights sleep. They also get worse quickly when I get up. Sunlight hitting my body will also cause them. They do not do any damage to vision and even the best Opthalmologist cannot see them. I try to deal with this dysauta whata; one symptom at a time. I too had severe rheumatoid pain in my body as a child and that was when they called it Rheumatism. Then when they got blood tests and it wasn't that or Arthritis they started pain pills for arthralgia. I finally solved it many, many years later with diet. I am super sensative to beef, milk, butter, cheese and just any cow product. The knee problems were made much better when I took acid completely out of my diet. This is not an overnight thing, but my god I thought I had to live with those pains for life. All of the swelling is gone from my knees and the rheumatic type pain is gone. But truly, for me it is one symptom at a time. Is your daughter suicidal at all? When you are that age it is really hard not to be when all you have seen is disappointment. I don't post as often as I would like to but reading about your fatigue and how hard it is on you. I worry that she might start feeling she is a burden. I always feel a bit better after I read posts about dysautonomia and OH. Keep going girls. I am going to post again a little later about my crazy B.P.

Hi Laura34

Yes I do believe the sudden blood loss from the blood drive was too much for my daughter considering all the blood she has lost over the last 8 years due to her excessive menstrual cycles. Perhaps she had this condition in a dormant state until that dreadful day in Sept. 07. I do pray that you will start to feel better soon. I just found out my mom has MVP. Isn't that a form of Dysautonomia? With that being said does that mean this is hereditary? I thought I read that it can be.

Hugs!

Hi Highland Lass,

To answer your question regarding my daughter being suicidal...the answer is no! She is one of the most well grounded, confident, with an innate sense of spirituality and faith. I have always been amazed at her ability to remain positive even when lifes challenges are too much to bare. She always says that God must have bigger and better plans for her down the road. In her eyes this is just another test to prepare her for the next phase of her life.

All I can say is that she didn't get it from me, I was not that intuitive at her age nor did I didn't have the connection to God and religion that she does. I stopped questioning my faith just before I had my children as they were both miracles. I was told I would never have children.

So yes, she like all of you going through this illness have a lot to bare, but she has a very healthy outlook and I thank God everyday for that. I am happy that she has such a conviction because it has helped her get through some pretty tough times.

Whether she sees a tired look in our eyes or not she is well aware that no matter what we are here for her. Willing to do whatever it takes to help her and find the best doctors possible.

Another positive thing that has come out of this illness is that her younger brother has become more attentive to her needs. He carries her up the stairs if she can't make it and he no longer feels the need to bicker. I know it has him worried as well as the prospect of her moving out and going to college but then again that won't happen till the spring semester. So I suppose he is making the best of it.

My thoughts and prayers are with you daily!

Hi Rosie,

Thanks for the information on MVP. To think prior to this I only knew MVP to represent most valuable player...I've come along way.

It was a shock to hear my mom say she had MVP and also a cousin of mine just had a newborn diagnosed with PAF...that was very sad. He is not expected to live.

Take care

Hugs and prayers to you!