Results Of Tests - More Info With Labs

[Anoj]

Hi there!

I wanted to share my results from recent testing. I got more than a phone call this time - met with doctor for a full discussion. Some of it is still confusing to me!

This is the basic summary: Upon HUT, I have extensive veinous pooling. My body reacts to that by increasing heart rate, BP and vasoconstriction. Baseline was 92/63 with 85 bpm. Upon tilt, rose to 169/119 with 107 heart rate. It took 11 minutes for pre-syncope, with 105-110/75. The slowest heart rate was 62 bpm. After the 19th minute, BP went back up to 140-165/95-105.

Normal response to isuprel stimulation.

Blood tests:

Baseline:

Catecholomine, plasma 480 (ref range <504)

Norepinephrine 442 (ref range <420) this was high-out of range on baseline

Epinephrine 38 (ref range <84)

Dopamine <30 (ref range <60)

Upon HUT:

Catecholomine, plasma 611

Norepinephrine 479

Epinephrine 132

Dopamine >30

48-Hour Holter:

Bpm varied between 55-139

No PVCs

PACs avg. 1 per hour

Spectral measurement of HRV suggests diminished vagal control during active hours and poor vagal control during sleep

Waking tachy of 120, which he says is abnormal and suggestive of sleep apnea

1 episode of dizzy reported corresponding with walking - HR 120 sinus tachycardia

Pseudo scan: (I have no idea what this is - I placed hands and feet on a machine and it scanned)

Suggest early systemic peripheral autonomic neuropathy

OK, now for summary of the consultation.

The doc says that I have POTS, although he doesn't like the term because he says it's becoming "trash can terminology." He says that my problem is pooling, and my body reacts with a hyperadrenergic response. I find it odd that he said POTS since my HR didn't meet the true criteria - raise 30 points or get up to 120 (although my symptoms are consistent with POTS regardless). I am not sure if the labs point to hyperadrenergic POTS or partial dysautonomic POTS. A bit confusing since I have elevated BP and catecholomines. Yet, I have early systemic peripheral autonomic neuropathy and the norepinephrine levels are not up to 600. As you can see, my other levels rose drastically. He said my adrenaline kicks in "with a vengeance" once the pooling starts. So, is it possible to have overlap with different kinds of POTS? Does that even matter anyway?

He said that rising HR of 120 is abnormally high, so I will be doing a sleep study. He says this is a possible indication of sleep apnea and this is why I feel constantly fatigued. It's like I'm sleep deprived - despite the fact that I get 9-12 hours of sleep per night!

I am disturbed by the peripheral neuropathy findings. I am obese now - 220 pounds. This is due to the Zoloft. My normal weight was 140-145. I have gained 80 lbs in 2 years since I began taking it. At this point he says I am at risk for diabetes, and we decided to start weaning from the Zoloft. I am a bit scared of this because the withdrawal has always been terrible for me - will make my dizziness worse, and who knows how the POTS will react. The treatment of choice is beta blocker - have discontinued Florinef and Midodrine.

Here is the part of the conversation that I don't necessarily like. He feels that the POTS is a result of deconditioning. UGH. I wasn't athletic when this hit, but I was definitely very active. Don't get me wrong - I absolutely subscribe to the notion that exercise helps and have even experienced that myself. But he basically said the illness depends on me exercising and losing weight, as if that is the be-all, end-all solution. (I wasn't obses when this started!) Again, I am a willing participant in his treatment plan, but I guess I feel like this deconditioning theory diminishes the seriousness of the syndrome itself.

All in all, I am pleased with this doctor. It always takes nearly 2 hours to wait for him, but once you're in, he spends TIME with you. He does not rush you out the door, explains things and doesn't act as though your questions are bothersome. I am also very surprised that he is so close to my hometown. I feel like I have more answers to what's actually happening. (Along with more questions, haha.)

I already have an appointment with my endo about my thyroid in a few weeks. I plan to bring him all of the test results and discuss the neuropathy issue. I wonder about the point of this test in a cardiology setting - I don't know why he's focusing on possible diabetes - shouldn't the test be some sort of indication of autonomic problems? If anyone can shed light on that, I'd appreciate it.

Thanks for reading; sorry so long.

[sue1234]

There's that "deconditioned" thing again! But, overall, he seems like a great doctor that did all the right testing. Are you having glucose issues too?

BTW, I PMd you.

[Clairefmartin]

This is why the grinch stuff is so damaging, i'm hearing it from patients left and right. So I would ignore that part. I'd suggest seeing a neurologist who knows about dysautonomia if possible, and the endocrine doc. YOu are entitled to a second opinion, especially regarding the Zoloft. I'm in the same boat for different reasons - was on forced bed rest becaise of a crazy high risk pregnancy for 9 months, and I am beyond deconditioned (and 60+ pound heavier) and now have possible metabolic syndrome (blood sugar is all over the pace, liver numbers wacky, triglycerides high, etc...), but there is no way for me to work out when I start to pass out after 2 minutes.

How did they determine neuropathy? Did they biospy you or do an EMG (the shock test?) or any others? There is a good run down here: http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/evaluation/.

Best of luck! Glad you are getting some answers!

Claire

[Anoj]

This is why the grinch stuff is so damaging, i'm hearing it from patients left and right. So I would ignore that part. I'd suggest seeing a neurologist who knows about dysautonomia if possible, and the endocrine doc. YOu are entitled to a second opinion, especially regarding the Zoloft. I'm in the same boat for different reasons - was on forced bed rest becaise of a crazy high risk pregnancy for 9 months, and I am beyond deconditioned (and 60+ pound heavier) and now have possible metabolic syndrome (blood sugar is all over the pace, liver numbers wacky, triglycerides high, etc...), but there is no way for me to work out when I start to pass out after 2 minutes.

How did they determine neuropathy? Did they biospy you or do an EMG (the shock test?) or any others? There is a good run down here: http://peripheralneu...pn/evaluation/.

Best of luck! Glad you are getting some answers!

Claire

hi claire, the neuropathy was determined with something called a "pseudo scan." i've googled it and can't find any good info. they made me place my hands and feet on these metal plates on this machine, and it scanned me. what i'm wondering with this is what is the point of the test? the only thing he mentioned was my weight and risk of diabetes in relation to this test. but doesn't autonomic neuropathy mean something different than diabetic peripheral neuropathy? i just feel like he's missing the bigger picture with the autonomic system here. i'm 220 lbs. now, but when i got sick i was 160.

the weight is definitely because of the zoloft. i was 140-145 my whole adult life and generally happy with my weight, then got on it for stress and gained 20 pounds in 2 months. i weaned off because i didn't like the weight gain, and then i started having fainting spells and then "crashed." cardio put me back on it, and i've been on it since. i feel like weaning from the zoloft the first time caused the dysautonomia. the doctors think it was "masking it." funny, because i never had problems before i got on it. i did NOT want to get back on it, but i was desperate to get back to work. i went back to work for about a year and now am on FMLA again due to the TTT and resulting fatigue, not to mention all the switching in the meds. i don't want to be on zoloft. i hate it. i hate the weight gain. first doc acted like "do you want to walk or do you want to be fat." that's the way i justified all the weight gain. "Well, at least I can walk!" now i have other problems because of the weight, or at least that's how they're making it out. i'm allergic to celexa and lexapro and will not touch paxil because of the short half-life. i was on effexor a long time ago and had some disturbing problems - started to have "withdrawals" before it was time for my next dose! two hours before it was time, i would get the dizzies and brain zaps. so, i'm going to see if i can manage my health without them.

[Clairefmartin]

I had a SUDO SCAN! Not many doctors do it, its geared towrds dabetic neuropathy, and I'd humbly suggest that you see a nuero that will do some of the other tests to dig deaper and see whats going on with your neuropathy. Here's a link to info on it: http://www.impeto-medical.com/sudoscan-plus/the-sudoscan-plus-principle/

Zoloft is known to put weight on people, that is no fun. I'm having so many more issues now that I'm overweight as well.

I hope you find a solution for the Zoloft, hopefully others will chime in.

[HopeSprings]

But he basically said the illness depends on me exercising and losing weight, as if that is the be-all, end-all solution. (I wasn't obses when this started!) Again, I am a willing participant in his treatment plan, but I guess I feel like this deconditioning theory diminishes the seriousness of the syndrome itself.

These POTS Dr's need to make up their minds. I had a POTS Dr. tell me that he noticed a lot of us (me included at the time) have a low BMI and he thought this might be contributing to POTS symptoms. He told me to gain weight. Well, since having my second child, I am ten pounds heavier and a totally normal BMI and guess what, still have POTS! I don't understand what exercise is going to do if one has neuropathy... which causes the pooling because blood vessels can't get the signal to constrict... which then in his words triggers the hyperadrenergic response? Nerve damage is nerve damage. I think this is where Dr's should be looking. Why do so many of us have neuropathy - what is damaging our nerves? Can I ask a question - did the Zoloft come before or after all the symptoms? I recently found out that SSRI's can cause nerve damage - for some it's temporary, for others perhaps not. This was disturbing to me because I had been on Paxil and have neuropathy. If the symptoms began before Zoloft never mind about that, but I'd still look for underlying causes of neuropathy.

[Anoj]

But he basically said the illness depends on me exercising and losing weight, as if that is the be-all, end-all solution. (I wasn't obses when this started!) Again, I am a willing participant in his treatment plan, but I guess I feel like this deconditioning theory diminishes the seriousness of the syndrome itself.

These POTS Dr's need to make up their minds. I had a POTS Dr. tell me that he noticed a lot of us (me included at the time) have a low BMI and he thought this might be contributing to POTS symptoms. He told me to gain weight. Well, since having my second child, I am ten pounds heavier and a totally normal BMI and guess what, still have POTS! I don't understand what exercise is going to do if one has neuropathy... which causes the pooling because blood vessels can't get the signal to constrict... which then in his words triggers the hyperadrenergic response? Nerve damage is nerve damage. I think this is where Dr's should be looking. Why do so many of us have neuropathy - what is damaging our nerves? Can I ask a question - did the Zoloft come before or after all the symptoms? I recently found out that SSRI's can cause nerve damage - for some it's temporary, for others perhaps not. This was disturbing to me because I had been on Paxil and have neuropathy. If the symptoms began before Zoloft never mind about that, but I'd still look for underlying causes of neuropathy.

your response is right on! i DID NOT have these problems before the zoloft! however, i did have "minor" problems. for example, i was unable to take pain pills after dental surgery because they made me faint. however, this was a minor nuisance and temporary. it wasn't until i weaned off of zoloft and then drank some alcohol that i had my true POTS crash. that was the trauma. three beers one night, and i was done. can you tell me where you found this info about SSRIs? also, do you mind if i ask - did you have a hard time weaning from the paxil? i have heard horror stories about it, and i had a rough time weaning from the zoloft.

i want to go back to what you said about nerve damage and venous pooling. in my case, the doctor said that my blood vessels constricted very tightly. however, i guess this is AFTER the pooling? how does this info fit into what you are saying about neuropathy and pooling? i'm just trying to understand.

so, in order to understand more about the neuropathy, i should see a neurologist? would they be able to explore autonomic neuropathy as well?

thanks!

[Anoj]

by the way, i was also tested for diabetes when this all happened, and i did not have it!

[HopeSprings]

I forget if it was here that I learned about SSRI's and neuropathy? I'll bet if you google it, you'll find info. I had an awful time coming off Paxil. The withdrawal was horrendous. I cold turkeyed though because back then they didn't seem to advise people to taper off. It's complicated because shortly before that I had been on Klonopin and had a long nasty withdrawal getting off that and then they put me on Paxil because part of the Klonopin withdrawal was rebound anxiety (which I didn't realize at the time had to do with Klonopin withdrawal). Long story, but somewhere during those two drugs I ended up with terrible burning in my feet and indescribable pain in my legs. I NOW know this was neuropathy. It took YEARS to diagnose, even though I told many Doctors about this symptom. It's disgraceful. I can't say for certain the drugs caused it, but the timing is suspicious.

My very simplified understanding of how neuropathy might cause our problems ... Damaged nerves not being able to signal blood vessels to constrict ..the result being pooling. The pooling sends the heart into hypergear trying to pump blood back up. How did the Dr. know your blood vessels constricted very tightly? I don't get it - why would you pool if the blood vessels are working properly? I believe if the sensory nerves are damaged there's a good chance the autonomic nerves are damaged too. And especially when there is evidence (or symptoms) of sensory neuropathy, PLUS autonomic symptoms. If this is damage from the medication then obviously there would be no point in looking for an underlying cause for the neuropathy... but how can we know for sure? I'm in the same boat as you - just trying to sort it all out.

I wonder if you got off Zoloft and after your body had time to heal, if you'd get better?

[Anoj]

i can't believe you went off of paxil cold turkey. it has the shortest half-life, which makes withdrawal the most difficult of all the SSRIs. whether my body is ready or not, i'm getting off of the Z. i can't have all these meds causing weight gain - especially since it's not hitting a plateau or stopping. it just keeps going! i'm already dizzy from the withdrawal, but i plan to perservere. all i've done so far is take a half a pill every other day, twice, and i'm already super dizzy.

i googled SSRI + neuropathy and most of what came up was that it is used to treat neuropathy. mainly, i want to understand how neuropathy could be related to dysautonomia, especially in the presence of a possible sleep apnea dx. i don't know if any dr. can answer that for me. it may be dots i just have to connect myself.

i don't know what made him say the blood vessels constrict very tightly or how he measured that. i think he was able to demonstrate it with one of the tests. i think it happens after the pooling. my body goes haywire trying to correct the pooling.

[Anoj]

this is my plan for now.

staying on FMLA. (this is my 2nd round in the past 1.5 yrs!) applying for STD from my health insurance co. getting doc to sign paperwork (PLEASE GOD, don't let him put "deconditioning" on the form!)

if and when i return to work, plan on requesting telecommuting under ADA with my HR department. my supervisor lets me work from home at her whim but gives me loads of grief about it. i want to ask for permanent telecommute status.

will see my endo. will possibly follow up with a neuro. (my options locally are not super wonderful.)

one last thing, renewing my handicap license.

i think i'm writing this post for myself, lol. sometimes it's hard to sort out a plan for each detail.

[HopeSprings]

Yeah SSRI's are used to treat everything these days - not surprised it would be listed to treat neuropathy. When I look up SSRIs causing neuropathy I come up with sites like this:

https://www.paxilprogress.org/forums/showthread.php?t=50867 I go by patient experience because I know -having been through it- what kind of damage (even temporary) these drugs can cause some people and I believe it when others say it happened to them. That said, I'm not sure these medications caused my present issues and the Zoloft may not be causing yours. You should definitely investigate all possibilities. I'm sorry you're having difficulty coming off - I hope you'll get through it quickly and feel better soon.

[Friedbrain]

A couple thoughts.....first, I don't know much about the finger scan you had but do you experience numb/tingling fingers? I sometimes get that, but my understanding is that it also can be related to dysautonomia, involving blood flow.

Also, (again, imu) I was told by my diagnosing cardio that an antidepressant would help with dysautonomia by helping even out my physiological response to stressors, thereby reducing my body's swinging and help me stabilize. I haven't tried it yet, but it makes sense. It's unfortunate that you gained weight, though, and I can understand why you'd want to try going off it! Kind of a catch-22, which bites.

As for the sleep apnea diagnosis.....have the sleep study to see what the data shows, and here's why I say that.... I have sleep problems one or two nights a month, where I wake up multiple times, with tachycardia, and at its worst, ending up with fullblown all-body shaking episodes (well, at its VERY worst, when all this started, pre-medication, I was status epilepticus and seizing all the way to the ER, but that was a long time ago!). Sometimes it seemed like I was gasping for breath, so my famdoc ordered a sleep study. I timed it so I'd hopefully experience a Bad Night (before my period), and I got it. Took me a long time to fall asleep (lots of jerking and tachycardia); then woke numerous times with heart racing. The results showed a significant reduction in sleep efficiency (time after falling asleep asleep), etc, but no obvious lack of oxygen. I was disappointed because it didn't do ANYTHING to help me understand WHY I was waking up frequently, or having the tachycardia.

One time I read my bp right after waking up and the pulse pressure was like 10. I think what happens is.....maybe......my bp drops too low at night (I have daytime low bp probs, and bp regulation probs), and my body "shocks" itself and overshoots, resulting in waking me up, tachycardia, and sometimes the adrenaline shakes. The sleep study was worthless for showing anything about this. In fact, it didn't even tell me, which would have been logical, whether my wakenings were happening during a certain stage of sleep. Because, duh, if I "only" woke up 5 times during the night, but slept for 5 hours (because I wake up in the middle of the night with my mind bouncing and can't sleep for a bit of time during these nights)......... and if it's consistently happening at a certain stage, maybe that would also help with diagnosis. I was ticked. It would be GREAT if there was a sleep study for dysautonomia patients! One that correlated bp with sleep awakenings! Ask if you can have those noted during yours, maybe?!

[goldicedance1]

Just wanted to say that I was in a similar situation with Zoloft and weight gain. Though I thought my weight gain was also attributed by the Lyrica. My doctor switched me to Pristiq and Topamax. I did lose weight without adverse symptoms. I had to transition off the drugs. I had to transition from one drug to another so I could tell what effects I was having.

You may want to check with your doctor about switching to Pristiq--a newer drug.

Just a thought.

Good luck!

[Anoj]

so does anyone know if it is possible to have more than one type of POTS? it seems as though i have a combo of partial dysautonomic and hyper ???

i'm looking at this article for the different types: http://www.dynakids.org/Documents/pots_article3.pdf

[Anoj]

my hemoglobin a1c came back "normal" at 5.4 with blood sugar averaging 108. range is <6 and <120. so, i don't have diabetes! maybe that will make him understand that neuropathy isn't necessarily related to diabetes? although my levels are a bit on the high range of the scale.

[comfortzone]

It does get confusing - so I may have to write out a question list for my neuro soon... I was told EDS'ers do have often small fiber neuropathy - mine dx'd by biopsy. Okay I was on a medicine years ago that raises HbA1c as an unwanted side effect - and ever since then my a1c is about 5.9 to once 6.4 - and I'm obese. Going on metformin didn't have the number change so quit that after a year. Did Atkins for a month and my a1c improved - but I gave up on it after awhile.

The blood sugar - never over 115 fasting - and the 2hr gtt - had my pre sugar drink and post sugar drink numbers the very same - as if I never drank it at all - so I was told that was cool - and normal.. no one has called me diabetic yet.

So I have 'eds' and many years of borderline a1c numbers - I really don't know why my feet tingle and the biopsy came back positive. But also 25% of all people have SFN and never have a diagnosable reason for it - a foot doctor told me that. So there's idiopathic neuropathy as well... where you are just 'lucky' - not.

Vasomotor instabilitiy - pooling - increased catecholamines with standing - I get all that I think - and I have all that -- but never told POTS aside from a geneticist who said, "maybe POTS" -- I really just had baseline tachy of 100 -- that was my avg. ... Runs of PAT and a bunch of PAC's - PVC's - your basic palpitations I suppose... so i was put on clonidine and propranolol and so far that's been about the best combo found... I've been on many other treatment plans but all failed for one reason or another...

I wish I could stick with a wt. loss program - so much would be 'better' - but how someone intelligent and knowledgeable about so much in life - cannot fix this one issue just blows me away... I have labile b/p - and if I lost wt. I'd have to tinker a lot with meds per my doctors orders so I don't bottom out with my pressures - but in the end - gosh Maybe my htn would go away entirely! My joint replacements might actually last awhile - my blood sugar issues might disappear - I mean so much good would happen - Yet for some reason --- I have not been able to manage this one thing. I try and then suddenly have to travel, or a holiday comes up, or I try working, there's always something that derails me - and I don't know why I let this happen GRRRR.....

But - back to the issue of neuropathy ... it's complex and I wish I could word it better -- but EDS patients have it - the guess - for the reason of all the connective tissue being wacky and nerves may be treated in abnormal fashion by a body so out of wack - not sure if they think pinched nerves or what - but something like that -- which is totally not glucose related at all...