Overwhelmed... Had Another Dr. Appmt.

[ajw4790]

Hi again!

I have been meaning to post for days, but haven't had the time and energy. I am still trying to process everything as well. Plus, I am having to deal with my own personal drama at the same time that there is a lot of family drama (due to loss of job of primary breadwinner, possible move, and family not understanding my limitations), so I feel overwhelmed and like everything is everywhere... There is too much to concentrate on and deal with, so I needed a little vent...

So, I went back up to Cleveland. My big bunch of blood tests are all back and from what I could read on the impossible printout they gave me, and what the dr. said they all came back good (negative). He went over my test results from my previous Cleveland trip a little bit (TTT, Hemodynamic TTT, and QSART, but I wish there had been more time because I still don't feel I understand everything. But, it did back up previous diagnoses/tests that I have small fiber neuropathy and POTS. The mechanism of the small fiber neuropathy is still unknown and am told pretty much all testing has been done to find out what is causing it and no answers, so I will likely NEVER know. (although that is common, I pretty much already knew it etc., it is still hard to hear).

But, for me they are saying that the cause of POTS symptoms is pretty much all due to blood pooling (supine, standing, and sitting). The pooling is due to the blood vessels not constricting properly, possibly due to EDS, but also likely due to the small fiber neuropathy- which affects the small nerves that control constriction/dilation of blood vessels. Good news was that I don't have signs of autonomic failure (I was worried, so that is good) and that everything neuropathy wise is distal and not much degeneration proximal.

I thought it was weird/interesting that I pool so much supine, and or less I misunderstood it still pools in my legs/feet and not what is lowest to the ground.

So, I am about to join the compression crowd, have to tilt the head of the bed, work on exercising more, and adding Florinef. Possibly change to Propranolol later...

I also talked to him about more family history I have learned or forgot on the last visit. After telling him, he said there was one other blood test they could do. Now that has me a little worried, I feel it will likely come back negative like he said, but the possibility that it is familial amyloidosis does have me worried... Also, looking more at possible autoimmune cause...

I had other stuff I wanted to post, but this is already so longgg....

So, I will have to add it later.

Thanks for letting me vent and share with all of you!

If anyone has any pearls of wisdom on any of this please let me know!

[firewatcher]

No pearls, sorry. If I had a super-secret doctor decoder ring, I'd let you borrow it so that you could understand what they were saying.

Only support and understanding.

Hang in there.

Jennifer

[EarthMother]

{{{{{{{{{{{{{{{{{{{{{{gentle hug}}}}}}}}}}}}}}}}}}}}}}}}}

I am so sorry that more light at the end of the tunnel was not forthcoming at your Cleveland meetings. It would be nice to have some leads as to new treatment options. But as you know that is often not the case. We each seem to muddle through, day by day, tweaking this or that along the way.

What seems so hard for you right now is all of the additional life changes that is effecting your support network. Under their own stress, some people may become very focused on the crisis at hand and have a hard time remembering the life limiting nature of our illness. I know it must seem like everything is falling apart (on some level) right now ... but keep in mind that sometimes when the dust does settle the new landscape around us is so much closer to the vision we hold in our mind's eye.

Keeping a good thought for you.

~EM

[all4family]

Hi AJW,

No pearls here either, but I sure do understand where you are coming from. It seems there is always another blood test that they can do though they think it will come out negative. There is always another test that we hope will be negative, but at the same time hope to find a way to feel better. And having the streess of money and family problems piled on top of that! I really feel for you. It sure would be nice if we could go to the doctors one time give some blood and come out with all the answers we need wouldn't it be? Glad to hear all the blood tests came back good so far! Glad you don't have signs of autonomic failure! I will keep you in my thoughts and prayers...take care.

Suzy

[ajw4790]

Hi,

Thanks for everyones replies. I know I didn't end up having much in the way of questions... I just needed to vent etc... Thanks for all your understanding!

So, I guess for now the focus is on blood pooling and to minimize that. So, I have gone and bought some abdominal compression that I thought I may be able to stand. I have not gotten to the medical supply store to get fitted for the thigh high compression hose yet... Do those who do thigh high stockings get it in extra high stocking form or like pantyhose?

I am still adjusting to the increase in Cymbalta, so I haven't been quick to add all this in yet. I do have to say though that the skipped, fluttery, knock your breathe out type heart beats that I had at the beginning of increasing of the dose have pretty much gone away!!! Wahoo!!! I don't know that I see much improvement though on the higher dose... What dose of Cymbalta do you find helpful??? (those that take it- I know everyone is different )

Logistics question: Those who tilt the head of the bed to decrease fluid loss over night and tilt the bed 6-10 inches, what is the best way to accomplish this? I have two beds (my apartment and parents house) one is a twin with no head or footboard and the other is a full size with a head and foot board that is not high enough to keep me from sliding off the bed. So, I have to "fix" both to tilt the 6-10 inches. Any cheap suggestions? I am really not sure how to accomplish this, because that is quite an incline! How do you all do it? I have 4 bed risers (2 for each) that are 8 inches to go under the head of the bed. The problem is the foot of the bed... and not finding myself slidding onto the floor!!!

Need any and all suggestions!

And for the most recent blood test I was/am worried because it is a fatal disease that does not give a very long projected survival time after diagnosis, even after a liver transplant. So, I know it is not likely and everything, but it is an awful thought... AND that it is FAMILIAL....

I think that is all for now... I know I had a couple questions I can't remember...

[janiedelite]

Hi ajw,

I recently got back from Mayo and had much of the same testing as you, and they gave me the diagnosis of POTS due to small fiber neuropathy also! I had an abdominal fat pad biopsy (not as bad as it sounds, just like giving an insulin shot but with a bigger needle) and came back negative for amyoidosis. I also had literally dozens of other tests for small fiber neuropathy that came back normal. He couldn't completely rule out MCAD, but the labs were normal for that too. I know it's so hard to not dwell on the worst case scenario. My hubby and I were so relieved once all the "bad" stuff was ruled out and we found out I mainly had neuropathy and POTS. I have a tremor, too. I also feel fatigued even lying down and pool not just in my legs, but my arms, and torso.

Compression hose: I went online to brightlifedirect.com and got their allegro brand. They're cheap and on the website there is a measuring chart to figure out your size. I use their thigh-high hose, especially on days when I'm having more nausea/tummy issues. I also have waist-high Jobst ultra sheer and they're so comfortable but still give great support. They run easily though and are over $100. A nice side effect of the waist-high hose is they serve as kind of a lower-body girdle . I have abdominal pooling, too, so I wear the waist high most days. I wear some kind of hose every day, though.

Head of bed: I couldn't tolerate having my bed raised more than 3 inches at first. My hubby and I stuck books under the top corners of the bedframe. I've heard you can also buy wedges at medical supply stores (like for pregnant women who have GERD and sleep with their head up). I think I'm going to try to raise our bed up another inch.

I'm so sorry about you guys losing your income! All the family stuff sounds like the pits. I don't have any advice about Cymbalta. The suggestions your doc gave you (along with extra salt and fluids and avoiding stress) have really helped me in the past couple months. I was nearly bedridden before Mayo, but can do quite a bit around the house and feel safe enough to drive most days! I hope you get some relief soon.

Take care, Janie

[Sophia3]

Unless you have supine HYPERTENSION raising head of bed often does not help many patients so keep that in mind.

Not to contradict the "experts" but most agree that is outdated or only good for SHY DRAGER SYNDROME patients who have profound OH but ELEVATED BP while supine or sleeping.

MY BP is very low supine or in A.M. Raising head of bed worsened that but it took me a few months to figure it out.

ALSO raising it more than 5 inches feels like sleeping on a slide!! Truly not comfortable,

I tried 4 or 5 inches YEARS ago and it made me worse.

DDAVP helped for fluid loss at bedtime.

Those wedge things for sitting up in bed are not the same at all....And watch for lower back pain.

been there done that could right the book.

We used some concrete blocks for raising a king sized bed and two male friends fixed it temporarily. Good thing as I hated it.

[all4family]

Unless you have supine HYPERTENSION raising head of bed often does not help many patients so keep that in mind.

Not to contradict the "experts" but most agree that is outdated or only good for SHY DRAGER SYNDROME patients who have profound OH but ELEVATED BP while supine or sleeping.

MY BP is very low supine or in A.M. Raising head of bed worsened that but it took me a few months to figure it out.

ALSO raising it more than 5 inches feels like sleeping on a slide!! Truly not comfortable,

I tried 4 or 5 inches YEARS ago and it made me worse.

DDAVP helped for fluid loss at bedtime.

Those wedge things for sitting up in bed are not the same at all....And watch for lower back pain.

been there done that could right the book.

We used some concrete blocks for raising a king sized bed and two male friends fixed it temporarily. Good thing as I hated it.

Hi Sophia,

Sorry don't mean to go off topic, but just want to find out.

I have generally very low supine b/p, but I have had some very bad spikes of b/p while sleeping. That was actually one of my first severe symptoms was waking with a blood pressure of 186/112. My doctor said to elevate the head of my bed too, although I haven't done it yet. But I did read that somewhere else too. If I am only getting the high blood pressure when laying occasionally, or in spikes, and I actually have hypotension when laying down sometimes, like 76/36, do you think that I should raise the head of my bed? When I am feeling my worse the best position for me is (and I have rode in the car this way before!) with my head hanging over the edge of something, and my chest in a downhill position. If you have any advice I would appreciate it.

Thanks,

Suzy

[Sophia3]

Not sure I can answer this question since I don't know all the variables. If you have SPIKES in B/P while sleeping, were you checked for sleep apnea? (That's a major symptom) along with snoring.

But if your supine BP is low and then spiking w/o sleep apnea, I don't know what that means and would not dare give advice. If the BP is high consistently then "perhaps" raising head of the bed would help.

But I don't try to answer questions like this that should be handled by a GOOD SLEEP specialist to find out more what is going on.

[janiedelite]

Hi Sophia,

I didn't realize the wedges were just for sitting in bed... oops! I've never had one, they were just recommended to me by the OB. And you're right that raising the head of the bed is certainly not for everyone. For me, the doc thought it would be helpful in order to prevent further deconditioning since I was spending so much time lying in bed. I think it has helped somewhat, although I implemented other treatments at the same time I raised my bed. My BP is low-normal (100's/50's) lying down and goes up on standing. I only have my bed elevated 3 inches, though. Thanks, Janie

[all4family]

Hi Sophia,

Thank you for answering....I don't blame you for not wanting to give specific recomendations. Yes I was diagnosed with sleep apnea as a matter of fact. But when I did my ttt I also had the supine hypertension, and the neurologist said sometimes that happens. But at least this gives me something to ask my doctor about. So thank you.

Suzy

[Sophia3]

all4 family

Glad I asked about sleep apnea but its interesting your supine hypertenstion showed up on a TTT for documentation purposes.

If ONLY we could all fit in a neat little box.

A pipe dream I know.

[ajw4790]

Hi,

Thanks again for everyones replies!

I have been brainstorming the whole how to make the tilting of the bed work, and I did come up with the idea to use a headboard as the footboard. The bed would look really weird like that, but tall enough footboards are hard to find. Otherwise I haven't had any brilliant ideas.

(Sophia, (and anyone with any knowledge on topic)

So, tilting the head of the bed has only been found to work in those with supine hypertension? I don't get hypertensive, but have supine hyperkinetic circulation. (not sure if tilting is supposed to help this as well?)

I know I did not tolerate tilting the bed previously and it was only 3 inches... But the dr. talked me into trying it again...

No dr. has mentioned dDVAP to me... I may have to ask? )

It still seems like my brain is going in a million directions...

I think I may order the compression hose online... Not sure yet. I wish I would get the results of that blood test!

I also see the allergist for the first time next week. I hope that it goes pretty well, and that I can get some answers to my multitude of questions.

I also have a derm. appmt in a month or so, AND an appmt. with a sleep dr FINALLY!!!! Have yet to hear if the one secretary FINALLY scheduled my rheum. appmt... I should have heard by now, and I already had called her.

[Sophia3]

ok, if you tried tilting the bed before and it did not help, do yourself a favor and skip it this time.

NOT TO SPEAK FOR THE EXPERTS but more than a few of us have tried the head tilt thing 8 or ten years ago...and it made many feel worse!!

Again, it's outdated material and more likely to help Shy Drager Syndromer.

Personally after talking with others, and my experience, I would NEVER raise the head of the bed again, even with a court order.

Now back in 98 my cardiologist that did my TTT that confirm Autonomic dysfunction (Did not use POTS term) said he had read of articles of raising FEET of the bed. Another guy that had a site on POTS told me he used to have a link on that but lost it. Apparently finding details on raising the feet of the bed is no easy feat.

Also it's a subtle raising. As a rule most healthy folks should never raise feet above head while sleeping which leads me to believe it's considered a controversial suggestion?? Don't know...got exhausted looking for the topic years ago.

(Raising feet as opposed to raising head)

[potsgirl]

AJW,

I'm wondering if you're being tested for the same thing I am - amyloidosis? Please let me know, as I'm also waiting for my genetic tests to come back...

peace,

potsgirl