Dysautonomia?!?!?

General
1

Who here has researched dysautonomia’s? Who feels they may have symptoms that they have chalked up to chiari but also fit with dysautonomia’s? For those who have had surgery have you been told structurally you are perfect yet you feel like s—? Has anything been tested that you have significant symptoms with yet everything is normal(test wise)? Is your blood pressure high or low? Does eating make you feel good or in a way worse? What time of day do you feel worse morning or night? What kind of pain do you have? If you have had surgery what is your worst symptom that you have? If you need to research before answering because you have no idea even what I am talking about please do - and say nope not me or yeah that really describes me. Just like everything over the past two years I am looking into things on my own and I am hoping with your input I can put some pieces together. I fit it to a T now the journey begins again for answers. I had often dismissed the whole POTS thing due to the fact that my bp is really high not low and I have never passed out. But I think that just may be a specific for there are many others. I am no ones problem but I will give my symptom list which has led me to this conclusion. I am seeing a specialist at the end of the month but I would like to hear more personal experiences and if anything gives you an epiphany during research.
Worst upon waking - I would describe it similar to morning sickness. Not throwing up but if I bent over I probably could
Extreme fatigue not relieved by sleeping
If I haven’t eaten I shiver terribly
Once I eat - even on a good day- I feel extremely full and bloated for the rest of the day. And could just go right to sleep
Back pain
Can feel so sick but in a way nothing really hurts specifically
After I eat I get a headache but if I don’t I get one then too
Very high bp that they can’t seem to adequately control
So far all bp meds make me even sicker
Thyroid is double its size yet all tests are normal
Low vit d yet I am a sun worshiper
Almost shaky yet my hand is steady as can be
Exercise intolerance - just totally wears me out like I have done far more than I have
Multiple past miscarriages
Anticardiolipin antibody - form clots that wipe out pregnancy
Extremely pre-eclampsia during both successful pregnancies
Father died of massive heart attack at 50
When I am feeling at my worst period stops unexplainable (was 28 days to the hour) and stopped for many months after first surgery
Tachycardia - for no reason and not psychologically induced. (Have run into an x friend I know what that feels like!! Lol)
Molted skin

I put all this up both for my own help but also to hopefully help others who are struggling yet everyone just tells you that you need a hobby better than going from dr to dr. To be clear - I have had all of these things looked at by their respective specialists and everything TESTS normal yet strangely out of range. Does anyone relate to any of this and can you add your own story if you see any similarities. Thanks in advance.

2

My daughter has POTS but is not a fainter. Her Cardiologist categorizes her as "pre-syncope". Her issues are very similar to some of yours and the rest of the list is lengthy. The symptoms also go hand in hand with some of the chiari symptoms. I, after some research read were there have been studies that have come to the conclusion that chiari can be the cause for the onset of POTS. Trust me when I say POTS is no fun. Any virus, anxiety, or even weather change can make the episodes flair. When she was first diagnosed the predominant issues were the black outs, not fainting (they are the same but different, if that makes sense), heart rate and abdominal pain. The abdominal pain would cause such extreme nausea that she would beg me to help her throw up. This is what her Cardiologist called "stomach migraines". Now she has not blacked out in a while because as she gets older she can recognize the problem and prevent the black outs. But the "stomach migraines" are still prevelant. She can go from do "ok" to just horrible in a matter of minutes.

Please feel free to ask anything. We have been living with POTS since 2006. Unfortunately she is one of the very few kids who has not grown out of it. It has progressively gotten worse. There are also some great stories on YouTube if you search POTS.

Like I said please feel free to ask anything. You have been an amazing sounding board for me and would love to share if it could help in any way.

3

Thanks.... I still don't know. ;)

I haven't had surgery and won't, so I don't know which of my symptoms would be caused by what.... or if there is anything to be done about them. We don't have any NS on island and I'm done w/ the only one that COMES to our island. He'd do surgery if I wanted, but doesn't think it would do any good.... and the risks aren't worth it for me. We have NO Chiari experts anywhere here... experts on pretty much anything 'out of the ordinary' are hard to get. I LOVE my MD and he sees me once a month, but it's just to track symptoms for SSI.

I do have the extreme fatigue and similar eating experience (eating doesn't give me a headache). My BP is normal to lower normal. I've had two miscarriages, but also 2 pregnancies w/out any BP complications... and the only complications involved were cuz the first pregnancy was twins and I am TINY. Most of my symptoms fit well w/ the Chiari (7mm), so... ??

4

I'm horrible at research. lol Thanks though. :)

5

The thyroid thing sounds like Hashimotos which lots of us seem to have and often have normal TSH, T3 etc. make sure they check your antibodies. Symptoms can be similar to those you describe too. LOTS of controversy in the area of treatment of Hashi’s with normal TSH so do your research and like with Chiari, finding the right doctor is key!