Vasomotor Instability D/T Sfn

[comfortzone]

Hi again ;-)

I do not have POTS -- per Mayo. But just FYI in case it helps anyone - I have this other phenomenon going on that had me a bit fooled I guess. I guess the small fiber neuropathy just diagnosed can mess with the vasomotor process in the legs... which in turn can lead to venous pooling and this is turn affects the baroreceptors in the neck & so on... If I understand this correctly the reason I get to feeling like I must lie down after standing too long - is because of the pooling thing. The treatment is to wear compression stockings -- so while I did a look at the links provided for two companies .. I'd be happy to learn about them - I have bad varicose veins in one leg - so maybe they will help that a bit too.

Not sure if I'm to get thigh high or knee high -- I'll probably start with knee high. I guess I can be pooling even when I'm sitting too - it can happen in this position too...I didn't know that. The other part is that I have essential hypertension that must now be treated with 3 medications - one of which is a diuretic ... so it's very tricky to get the meds right ... as a consequence I need to not ever get dehydrated or the lows in b/p and the pre-syncope stuff could get worse... I'm to drink G2 and water - a lot (I guess to counteract the diuretic)

The other part of my picture is that of a surge so to speak in catecholamines with standing. So the blood draw while lying in calm environment vs getting up and standing ten minutes - showed a robust rise in norepinephrine and maybe the others somewhat too. This is what may be giving me the lability in blood pressure - where it shoots up with standing - though technically I guess I don't have orthostatic hypertension. This could also be a hyperadrenergic phenomena that is causing my heart rate to go to 140 now and again with virtually only a change from sitting to standing - but this for some reason quit happening lately - so for me it's episodic I guess. This is also called vasomotor instability.

I have a lot of other little things that they figured out - but so far this is the part I wondered about - the pulse change, the blood pressure being out of control - the part that had my clinicians wonder about dysautonomia. So to me it does sound like dysautonomia ... but yet my autonomic nervous system proves to be intact and all with the 3 basic tests....

So it's a tricky and delicate thing to discern I guess...(not so much for a neurologist but for me for sure) Anyway wanted to update you all again just in case this kind of thing is happening to anyone else...maybe they could ask their doctor about such things to see if it will help them.

Thanks again for helping me here in the forum!

[Chaos]

Congrats on getting some answers from Mayo. Always nice to have some sense of the craziness that is making your body behave as it does.

I too had a SFN diagnosis, but had all my autonomic tests come back ok. Guess that's why they're calling it idiopathic autonomic neuropathy. When I asked the neuro at CC if his tests would tell if I had dysautonomia, his response was "we know you have dysautonomia just from the fact that your BP dropped on the TTT. Now what we're looking for is the cause of it." But, since his tests didn't show a cause, I still don't know that part of the picture.

From what I've read and learned over the years, I think you would want thigh high or waist high compression. If you stop with knee highs, it just pushes fluid up around your knees but doesn't get it where you want it to go.

What were your numbers on the catecholamine tests- if you don't mind sharing?

[issie]

You do want at least thigh hi's. I started out with knee hi's and that was a mistake.

So, on your TTT you didn't have the pulse rate hike? Nor, did you have it drop, as in orthostatic intolerance? So that's why they are saying you don't have POTS or dysautonomia? If your cat test were hi that definitly shows an adrenal surge. How did your endo test go. Did they check out your adrenals for Cushings? Couldn't some type of adrenal dysfunction cause the hi BP?

The EDS can cause the blood pooling too. Does the small fiber neuropathy fall into the caused by EDS picture?

(I guess I still have alot of questions on your behalf.)

Keep us posted as to how you're doing.

[nunntrio]

Is sounds like they really did a good workup. Can you tell me what test they ran that showed the vasomotor problem in the legs? I suspect I may have a bit of this as compression stocking are the only thing that helps me. To answer you question, waist high are the best and make the most difference but they can be uncomfortable. I sometimes wear tigh high ones if I am not going to be on my feet too much.

Did you see Dr. Goodman at Mayo? If so do you mind sharing a little about your experience? Do you feel like he really listened to you? Would you recommend him? I am looking for a Dr. to help treat me and not sure the best place to go. Thanks and I am glad you have gotten some answers.

[comfortzone]

Is sounds like they really did a good workup. Can you tell me what test they ran that showed the vasomotor problem in the legs? I suspect I may have a bit of this as compression stocking are the only thing that helps me. To answer you question, waist high are the best and make the most difference but they can be uncomfortable. I sometimes wear tigh high ones if I am not going to be on my feet too much.

Did you see Dr. Goodman at Mayo? If so do you mind sharing a little about your experience? Do you feel like he really listened to you? Would you recommend him? I am looking for a Dr. to help treat me and not sure the best place to go. Thanks and I am glad you have gotten some answers.

Hi...

Yes it was Dr. Goodman in Scottsdale whom I saw. I have a long convoluted story spanning most directly the past two years.... So while it's always frightening to me to begin in on 'the tale of whoa' with a new doctor - for some reason I just had confidence (bolstered by recommendations here for him) to tell it straightforward and keep talking till it was over and done with. He listened to all of it and took brief notes. I then saw him THINKING ... (I rarely see a physician think these days!) There was a lot of things to tease out and he let me know that up front. That because of all the little pieces it would take time to bring it all together. I told him I had planned to stay a week or week and a half - but would actually prefer to see things through all on one visit - rather than traveling back for part two.

It took awhile for me to understand the Mayo system - but if you have a dysautonomia type question - imho he'd be the one to see at Mayo because he would be the 'lead doctor' who would process your history and symptoms and then delegate to others the tests he wanted and all the referrals to other physicians if you should need their input for him to formulate his impression at the end of your stay. He is the most intelligent physician I have ever met and I've been a nurse for 25 years. He is well educated too. He never appeared rushed, never left before all your questions were answered. He wants you to feel better. He wants you to have answers - even though sometimes there are none for certain. I would see different doctors (all of mine were impressive - I was so blessed) ea. day and had different tests each day. I would wait 'stand-by' and they would work me in the schedule ahead of the 'locals' because of being an out of town patient.

I found myself listening a great deal to Dr. Goodman because he is so intelligent. He already spoke the things outloud I would usually have to teach my other doctors. So I rarely had to interject anything. He has an amazing combination of professionalism that overlies a very kind caring nature... So while your business time with him is serious & you don't want to steal time from other patients perhaps worse off - you don't feel hurried and when he does relax and smile it is just so genuine. So yes I recommend him, definitely.

[comfortzone]

Congrats on getting some answers from Mayo. Always nice to have some sense of the craziness that is making your body behave as it does.

I too had a SFN diagnosis, but had all my autonomic tests come back ok. Guess that's why they're calling it idiopathic autonomic neuropathy. When I asked the neuro at CC if his tests would tell if I had dysautonomia, his response was "we know you have dysautonomia just from the fact that your BP dropped on the TTT. Now what we're looking for is the cause of it." But, since his tests didn't show a cause, I still don't know that part of the picture.

From what I've read and learned over the years, I think you would want thigh high or waist high compression. If you stop with knee highs, it just pushes fluid up around your knees but doesn't get it where you want it to go.

What were your numbers on the catecholamine tests- if you don't mind sharing?

Hi....

Lying down supine Norepi was 208 Standing 646

Lying down epi 13 Standing 33

Dopamine < 10 each way.

Thanks for the tip on the compression stockings...I'm afraid they will be hard to put on ~ but I guess I have too! I didn't get a recommendation for the amount of compression or a prescription - so I guess it will be trial and error?

[comfortzone]

You do want at least thigh hi's. I started out with knee hi's and that was a mistake.

So, on your TTT you didn't have the pulse rate hike? Nor, did you have it drop, as in orthostatic intolerance? So that's why they are saying you don't have POTS or dysautonomia? If your cat test were hi that definitly shows an adrenal surge. How did your endo test go. Did they check out your adrenals for Cushings? Couldn't some type of adrenal dysfunction cause the hi BP?

The EDS can cause the blood pooling too. Does the small fiber neuropathy fall into the caused by EDS picture?

(I guess I still have alot of questions on your behalf.)

Keep us posted as to how you're doing.

Hi...

No pulse rise on the ttt - no blood pressure changes that were remarkable on the 10 min. study. I really didn't ask for a diagnosis and never pressed for a do I have dysautonomia ... because my case has so many confounding issues with the four joint replacement surgeries etc. But as to a frank or obvious signaling of dysautonomia from the TTT no - no diagnosis of that during this window of testing. However my symptoms that I experience that I shared -- has me feel faint-like at work while on my feet too long.......this was proposed to be due to blood pooling that can happen with SFN. I had a CT scan of the abdomen with contrast focused on the kidneys because of the hypertension and it showed normal...as did the cats and mets in the 24 hour urine - so no problems with adrenal function found. My Hypermobility Syndrome was diagnosed at a late age and very recently...I guess many people experience symptoms their whole life long with it - but me it kind of came on 'suddenly' - but in retrospect I see it as impacting almost every body system as collagen is everywhere.... So a major medical center diagnosed it back in CA - but there is still heated debate as to whether it's truly one and the same as EDS or a variant of EDS or it's own thing. Dr. Brad Tinkle just wrote a second book on the heals of his first book (from Cincinnati Childrens) and I like his approach in saying there is no distinguishable differences present - he truly has helped move things along for patients with his education through the books.... So I really didn't get into that too much because I guess it is thought I would have exacerbated with pooling long before....who knows I may have - If they want to suggest the SFN cause alone that's okay with me.... I think it could be both and maybe down the road I can discuss that more with Dr. Goodman - this visit though it seemed like a mute point. So I guess to answer your question no the SFN was never suggested to be caused or having to do with EDS...(or hypermobility syndrome).....

[comfortzone]

http://www.mayoclinicproceedings.com/content/82/3/308.full

I stumbled across an article on POTS from Mayo - that in turn ended with a great list of referencing studies and then followed a bunch of articles on the same or like-topic...

Maybe you already know of the Mayo Clinic Proceedings page - but I just stumbled upon it for what it's worth!

nowwhat! :-)

[nunntrio]

Is Dr. Goodman going to follow up and treat or does he just basically do the diagnosis? I hope you do not mind so many questions. As I said I am in the process of researching where the best place for me to go might be.

Thanks.

[issie]

Thanks for the tip on the compression stockings...I'm afraid they will be hard to put on ~ but I guess I have too! I didn't get a recommendation for the amount of compression or a prescription - so I guess it will be trial and error?

For POTS patients they recommend at least 30-40. To put them on, I've found that using rubber/latex gloves (like what you wash dishes with) helps tremedously. You can slide them up your leg and you won't rip them or stick your finger throught them that way. Makes life much easier and your hose last much longer.

[comfortzone]

Thanks for the tip on the compression stockings...I'm afraid they will be hard to put on ~ but I guess I have too! I didn't get a recommendation for the amount of compression or a prescription - so I guess it will be trial and error?

For POTS patients they recommend at least 30-40. To put them on, I've found that using rubber/latex gloves (like what you wash dishes with) helps tremedously. You can slide them up your leg and you won't rip them or stick your finger throught them that way. Makes life much easier and your hose last much longer.