HopeSprings

This is a crazy story! Unbelievable. Is this like Nutcracker Syndrome? Is your renal vein being compressed? I went through a whole thing with a vascular surgeon looking for this and indeed when I sit and stand this vein gets compressed. He didn't know what it meant though. (of course!!!!! ) I want to follow up with another Dr. about it, but need to find one who might actually know something. My God, did you find the cause of your POTS?? Joann - I've been pointing to that exact same spot to Doctors for several years, except mine is on the left. Ultrasounds show nothing.

That's great, Christy! I'm curious since the clonazepam is working if they ever did an EEG looking at possible abdominal epilepsy? Hope your son will experience long term relief from his symptoms.

Wishing&Hoping - I was recently tested for amino acids and some came back very low. They noted this is likely from a low protein diet, but I eat meat so I don't know how that can be. Can you say which specific testing you're referring to? I think the main first test in Mito is lactic acid, but even when this is normal doesn't mean there isn't a mito problem. It seems complicated to get a diagnosis or find a Doctor who knows a lot about this.

I don't know, but curious what does the Doctor say about the results?

This is great! Gives a good explanation of the illness without being too technical and confusing and does a really good job of explaining how debilitating it is. Yey for you - and for us because exposure is good! Good luck with your treatment if you go. Let us know what happens.

Yes, thanks Chaos. Was too brain fogged to take this on and you said it so well. CFS is real... I don't know what it is, I don't even know for sure if I have it - but way too many people are exhibiting the same set of symptoms (including POTS) for it not to be something. It's the one illness that is a match for all my symptoms (including the POTS). I think they're onto something. Julie, this is really hard to accept and I share your frustration. None of this makes sense and that's the hardest part I think.

Me too with the napping, FutureHope - my BP drops and I feel horribly sick after I wake up, but just lying down (no nap) is helpful. Sue - I have wondered the same thing about lying flat and I have no idea, but hopefully someone else can explain it!

I can't lie flat on my back either without feeling like there is an elephant sitting on my chest, but lying on my side with three pillows under my head is good.

What about Carcinoid? I don't know much about it, but when you said "flushing" it popped into my mind.

I know. Lying down helps so much, but I'm sensitive to the whole deconditioning thing too, the little voice in my mind yelling at me --> get up, don't lie too long, you're gonna make things worse! Yet being up and around causes so much discomfort (to put it mildly). There is an afternoon crash though where there simply is no choice. It really is cruel and like being a prisoner to your own bodily dysfunction.

I know what you mean - you want to collect all possible information. But maybe in his mind it didn't matter what happened past that point, meaning it wouldn't change what other tests he would want to do or how he would treat you? You can always ask him and see what he says.

I just really want it to be something other than POTS - something that is fixable. Or I guess I should say - an explanation for the POTS. Desperation always has me searching.

Ok thank you both. I figured, but thought I'd check just in case.

This is really good. I appreciate that he emphasizes how debilitating POTS is.

I was reviewing some medical records and came across a couple of EKGs that noted Short PR Syndrome. When I look that up, Wolff Parkinson White Syndrome or Lown-Ganong-Levine Sydrome (interesting names ) pop up. I certainly experience the symptoms these syndromes cause. I'm assuming since the Doctors did not even mention this to me, that's it's fine, but I never fully trust that. Anyone happen to know anything?

Oh and sending postive thoughts about that nodule as well. Hopefully it's nothing serious.

I remember you. I'm glad you had a period of doing better, but am sorry to hear you're back in a slump. I wonder if the exacerbation of dysautonomia symptoms is directly related to the back problem or is it just a dysfunctional ANS responding inappropriately to a physical stressor or could it be related to the shots? Just thinking - don't expect an answer. I just went through a few bad days with my back, could NOT stand up straight for 2 days and was walking around hunched over like a little old lady. It's not fun. I hope you're out of pain soon and that all the other symptoms calm down as well. (((BIG hug)))

I had mine today too. My attorney warned me that I would feel like I didn't say everything I wanted to and she was right. I don't feel like I explained my limitations very well. Lieze, my judge was also focused on treatment. The fact that I'm on no medication, what treatments have I tried, when was the last time I tried a medication etc. was questioned quite a bit. I previously submitted pharmacy records which show the many medications I've tried over the years, sometimes re-trying the same ones. It seemed like the judge knew nothing about me or my case, like this was the first time she was hearing any of this. I don't understand because my attorney previously submitted a brief, there were letters from Doctors, statements from family members, my own letters and of course all the forms I filled out and a TON of medical records. I went in thinking she would at least be familiar with some of the back story. Maybe she was, but just didn't act like it? I have no idea. There was a vocational expert who said I couldn't do my previous job, but found some jobs I could do based on the judge's first set of hypotheticals and then no jobs based on the second set. I think the fact that they found NO jobs for you might be helpful, Lieze. It ended with thank you, you'll have a decision in 4-6 weeks. Let's just keep our fingers crossed.

The pathology report from my first skin biopsy says "similar pattern of denervation can be seen in ganglionopathy." I'm not sure what that means - I think it refers the nerve root or something. Too foggy too think about this now, but saw the word "ganglionitis" and remembered seeing the word in my medical records.

YES! Very well said.

I've heard good things about this Doctor. He's on my radar as one to see if I'm ever in a position to travel. Maybe he'll know what to do instead of you having to ask - would be nice for a change. If there are specific ideas you have I'd bring them up though. Let us know what happens and hope it's a positive experience!

What Mighty Mouse said and also, a regular GP isn't usually going to know about POTS "types." I mean... you can try by showing articles etc, but this will likely just lead to frustration. I think your husband is right - if you want to get into all of that you need to see one of the few specialists who has this knowledge. And for her to definitively say you don't have an autoimmune illness without testing for any of them ... I don't have words. Please don't give up - just move on. ((hug))

http://www.cabinet.com/merrimackjournal/merrimackreadersubmitted/1006438-308/merrimack-woman-living-with-a-rare-illness.html

Yes! If you search "ears" or "vestibular" you'll find lots of past conversations about this. Dr. Yates has several published studies which show a direct connection between the vestibular and autonomic nervous systems. I even e-mailed him about the possible vestibular/POTS connection - unfortunately he did not respond. I then reached out to one of his colleagues who answered and gave me the standard POTS is a heterogeneous disorder, but if there was a researcher or medical professional interested he would speak to them. So many of us have this vestibular type of dizziness which is different from orthostatic lightheadedness. WHY.

So happy to hear it! Congrats Christy and son!!