davecom

I think the best thing to remember during a flare is that it's exactly that - a flare. You got better before, although of course not 100%, but still better than THIS, so there is a very very good chance that you will get better again to at least where you were a couple weeks ago. This too shall pass... Best wishes your way, Andy. Keep us updated.

Ya know there's a saying from a Beatles song... "The memories we have together are longer than the road ahead." That's how I think about me and the things I liked to do (tennis, traveling, world cuisines, romance, etc). Our situations ****. There's no sugar coating it. The depression from not being able to... function normally... that you're having IS normal. The comparisons of how it "could be worse" are not especially helpful.

BUT, I think the one thing everyone can agree on is in spite of how dire things seems you have to stay optimistic. And I see you don't think you have reason to, but I'm going to suggest to you that you do.

I can relate to you. I had a high flying career, a very serious relationship, independence, excitement, and everything a year ago. I'm just a few years older, but my downfall was more sudden. In the end we are relatively young. Research is advancing. New drugs are in clinical trials. Miracle recoveries (however un-logical that seems) do happen in almost all diseases - surely they have logical explanations, and yes they're 1 in a million, but the important part is they are real. It should give you something to grasp onto to keep you going if nothing else does.

I think we need to be realists too. I know I won't be in a boardroom tomorrow morning. And you know you won't be in a cockpit. But there is something productive you can do tomorrow morning, even if that's just working towards your recovery. Unless you've gone into the future and seen yourself in 5 years, I think you have a reason to have hope.

Racer, don't worry - about whether you're doing something wrong at least. Chances are that you are NOT doing anything wrong. This is just how we treat the chronically ill in 2013. We do the minimum and cross our fingers.

I think the problem, Anoj, is unfortunately much greater than that. POTS is just what its title says - a cluster of symptoms, a syndrome, caused by a variety of different diseases. The people on this board that label themselves as having POTS as a primary condition are actually generally suffering from a large multitude of different diseases in my opinion. Therefore one's advice about what works is often useless for someone else. The only thing everyone with POTS for sure has in common is the abnormally high rise in heart rate when standing... of course if you zoom out further and look at dysautonomia, not even that is held in common... and then we maybe dealing with yet an even bigger set of conditions. Sorry to derail this thread a bit.

I definitely feel best lying down, worse sitting, and my worst standing. The hallmark of the syndrome though is very clear for me - I have tachycardia generally only while standing.

Diabetes is by far the number one cause of autonomic neuropathy. I think glucose is worth exploring for everyone even remotely concerned.

In my own case, I decided to do a home glucose test myself because I was on a low carb diet for 7 years before getting sick but always noticed I got very tired after carbs. At home using a home glucose monitor (borrowed one from a family member with diabetes) I decided to administer my own test. I ate 100 grams of carbohydrates, and took my blood sugar 1 hour and 2 hours after. I scored 162 and 143 respectively. I also recorded a very normal fasting glucose of 86 - I had even lower fasting glucoses on other blood tests. I decided to show the results to my neurologist at the last appointment and he thought them interesting enough to order a lab glucose tolerance test which I'm going for tomorrow.

I think it's pretty unlikely diabetes caused my POTS/autonomic neuropathy given its sudden onset, but I'm exploring every avenue. If you're concerned and you have a family member who has diabetes monitoring equipment, it's easy enough to do a home test.

Hi Sunshine88,

I'm in New York so I'll message you privately about some doctors; however I would just add to the discussion by saying you may want to consider starting your reconditioning with recumbant exercise (exercise biking, rowing machine, etc) before getting back into running. It seems to be helpful for a lot of POTS people.

Thanks for posting about this and the detail in your replies. Keep us posted.

Thoughts on Dr. Levine for anyone who saw her? Also, does anyone know of a doctor who does MCAS evaluations in New York?

thank you i will... im going to keep a journal for a week about laying vs. sitting and go from there i have been having this for 6 months and my symptoms arent relieved upon sitting or laying ...but ill try that for a week and see what my heart rate is.... but id like to know is pots something that gets worse over time? can you die?

Good luck again - and laying vs sitting would not be as helpful as sitting vs standing... If I were you I would do a couple more poor man tilt table tests and talk to your doctor. Good luck!

No, it would be if it was looked at accurately. I had a holter 6 months before diagnosis that clearly showed I had POTS - heart rate was spiking to 150 every hour for a few minutes (must have been while I was upright) and the technician reported it back as normal. If he had been more vigilant I would be 6 months further along now... I later requested the report myself after I got the POTS diagnosis and was horrified. Ask for a copy of the report yourself if you're curious - or more clearly just ask your doctor how much tachycardia it showed. If the 24 hour holter is rarely showing big swings in heart rate then you probably don't have POTS.

Studies have shown that POTS is generally associated with decreased standing stroke volume:

http://hyper.ahajournals.org/content/58/2/167.short

...but this would very very rarely be ever checked for - in fact I have never heard of someone getting their stroke volume checked standing apart from this study. A holter monitor would show spikes of heart rate every time a person is standing up. So, in short no. Most patients will show no heart abnormalities. A subset of patients (perhaps a small subset) may have de-conditioning associated with the onset of POTS or accompanying it. In these cases, an exercise stress test may reveal de-conditioning. However, what is thought to be de-conditinoing may actually be POTS. Confusing - not really, but rather muddy.

PS I saw in the other thread that you were being treated for your symptoms as if you are being anxious. It is certainly true that in many many of our cases our symptoms were at least partially chalked up to, and misdiagnosed as, anxiety. At the same time, if you are anxious when you stand up, thinking you have POTS, then your heart rate will go up. Try not to be anxious when doing these tests - maybe think about something else or watch TV while you're standing. As much as you don't want a false diagnosis of anxiety when you really have POTS, you also don't want a false diagnosis of POTS when you really have anxiety or another condition coupled with anxiety about the condition (which is natural since we all are anxious about our health when we're sick - but it only makes it worse). Good luck!

Hi mkgirl01,

Only a doctor can officially diagnose you with POTS. With that said - your vitals during that particular test were quite normal. As someone else said, it maybe worth repeating a few times since symptoms can vary greatly day to day. If you do it a few more times and results were more dramatic then it maybe worth getting a workup from a doctor qualified to look into POTS.

No, I must have miscommunicated. I am not having one done - although I would be open to it. I simply had an appointment with a doctor here on the east coast who is known for doing them. My personal opinion is that it's a pretty sound idea if you do it under medical supervision with proper screening. But of course it's a bit of hocus pocus like most new treatments.

As far as the neuro goes... have you had the panel of autonomic tests? Have you had the small fiber neuropathy skin biopsy? QSART?

No qsart or biopsy, my cardiologist is the one who diagnosed me, based on my positive TTT along with my other tests.

If you're wondering where to go next - that might be next. If you need help advocating for it, perhaps show the doctor the Mayo study showing 50% of POTS patients have autonomic neuropathy.

Yes when I first got sick and thought all my issues were gut related I went on the Specific Carbohydrate Diet for a month (similar to GAPS). There is real stuff there. I had an appointment with the guy who does fecal transplants here in July that took 5 months to get, but I cancelled it because I thought my issue was no longer related to that... however it's rescheduled for January so I think I will go this time. Nothing desperate about it - I've read some incredible stories and there is real science behind it. Unfortunately the government has stopped him from doing it further outside of research trials.

I do think I may have recurrent E. Coli or a colony that has never quite been eliminated. I mean I obviously have messed up gut bacteria. I see it and feel it every day since I got sick. I had a stomach like steel before a year ago (other than lactose intolerance...).

Interested in more experiences with this - how have people with autonomic neuropathy found it in regards to tachycardia?

It is insanity, Maia. Wow, the stories would be hilarious, if they weren't true! And if so many people with even "slightly out of the routine problems" didn't have to suffer because of these doctors! I can't believe how suffering people are treated by our society. If you have cancer or a heart attack you get all the sympathy in the world... but if your life is unlivable but you're not in immediate danger, nobody cares - not even the people you are indirectly paying to take care of you.

Suthrngal - It is very difficult to get a doctor to give you an E. Coli antibody test. I only had it because it was a part of a large panel that they ran for me to rule out IBD (Crohn's, Ulcerative Colitis). Some papers have indicated an E. Coli antibody level of 16 as indicative of Crohn's disease - mine was 16.2 (normal <10). However, I tested negative for Crohn's by biopsy, genetic testing, and all other markers... so it's more likely the E. Coli was from just what you might imagine - an actual pathogenic e. coli infection. Some strains of E. Coli occur naturally in the gastrointestinal tract and are harmless - if your immune system attacks the harmless strains then that I think is when it starts being indicative of Crohn's.

As far as the neuro goes... have you had the panel of autonomic tests? Have you had the small fiber neuropathy skin biopsy? QSART?

Case study of a 26 year old Japanese woman who came down with rapidly progressing neuropathy and encephalitis from E. Coli infection:

http://jnnp.bmj.com/content/67/2/254.full

It really struck some bells with me since I match a milder case of her in some ways:

- I initially was diagnosed with colitis

- I showed elevated e. coli antibodies in blood

- I had elevated creatinine

- I had white blood cells in stool

- The course of my disease has closely followed the gastrointestinal illness - it waxes and wanes and as it does so too do my neuropathy symptoms

- I responded very very well to Rifaximin, an e. coli targeting antibiotic

- I had/have some similar symptoms, but of course her case was life threatening and I never had encephalitis

I intend to present the case study and all of my relevant lab results to my neurologist at the next appointment.

Dave- I considered the patchy explanation, but the latest neuro thought it didn't make sense because the samples were taken within inches of eachother. That first biopsy was reviewed by two other pathologists and they both agreed it was positive. Simply can't explain what happened with the other two. No, the burning has gotten worse over time, spreading to other body parts. I'm sure I have neuropathy, but is it causing the POTS, I dunno. I just like things to make sense, consistency - so I can be sure I'm heading down the right path. I agree with your method of going down the list one by one and eliminating possibilites. This has been my approach too. This conversation got me thinking last night and I looked into the Sodium channel Na genetic thing and there is testing available. Did you know about that? They say this may explain 30% of idiopathic SFN cases. I'm going to ask my neuro about it.

http://www.genedx.com/test-catalog/disorders/small-fiber-neuropathy-sfn/

Hi Naomi,

I did know about the original study about the SCN9A gene and I brought it up to the geneticist during my appointment last month. I did NOT know there was already a commercial test available. Thank you very much for the link! I will need to bring it up with the geneticist at the next appointment... whenever that will be.

Dave - I don't know for sure that SFN is causing my POTS and neither do the Doctors who report that my "POTS may be related to a small fiber neuropathy." I'm not even 100% sure about the SFN diagnosis, although I believe I do have it. My first biopsy showed SFN, but the next two did NOT show it and believe me, I did not get better in between biopsies. The I had a QSART which showed as very positive. So do I have SFN? Your guess is as good as mine and the Doctors cannot explain why the different biopsy/QSART results. They can't give me one logical explanation. I certainly have symptoms of sensory neuropathy, but is my POTS caused by autonomic neuropathy? I don't know. I have been tested for everything under the sun that could cause SFN and I am always negative. At this point we are re-testing everything under the sun that could cause SFN. I started with burning feet (I believe sensory neuropathy) and other neuro symptoms in 1997, but the crazy heart stuff (which started quite abruptly and dramatically) didn't begin until 2006. So did the neuropathy worsen overnight (sending me to the ER) or did something new happen? It's complicated and I'm open to all possibilities and willing to explore anything that can cause POTS. I think in my case it's possible I have one, two or even more things going on at once. I think Nutcracker is a longshot, but since there is evidence of compression, I think it's worth looking into. Obviously it hasn't been high priority because I had that renal ultrasound a year ago and still haven't done anything with it, but it's something in the back of my mind I may pursue when I've run out of other ideas.

Issie - I don't doubt it. I think true NCS actually causing disabling symptoms is rare and a longshot, but it's on the backburner you know?

Naomi,

Perhaps your small fiber neuropathy just is very patchy? How close together were the biopsies that were taken? Very interesting that you had one positive and two negative. I guess there is also the possibility that the first was just a poor reading? But combined with the abnormal QSART and the burning it would seem more probable that it was real. Has the burning gotten better?

Issie,

Of course there can be false clues. If you see a dead deer in your back yard and see a bear walk by, you may assume the bear killed the deer. On closer inspection though, you may find a bullet hole from a hunter in its neck.

In POTS, because it is not a disease but just a syndrome caused by another disease process, it is very easy to get distracted. For example, in my case I originally had four possible triggers that all happened at the same time. A severe reaction to a flu shot, two concussions, a likely viral infection, and congenital heart problems.

My POTS doctor told me you have to parse both your causes and your symptoms to get to the truth. He's right - I first went to a very local neurologist who kept insisting I must have post concussion syndrome. If I kept following that lead I would've never advocated for myself to get the QSART and biopsy showing small fiber neuropathy. We must be careful to not get distracted from what is truly causing our pain. I find it useful to approach things in a list and eliminate them one by one.

Naomi, that is very interesting. In your case, since you have the small fiber neuropathy diagnosis, why would you think this would also be causing a problem? Do you think you have two completely separate syndromes causing your POTS... as in mega POTS? I ask because I also have small fiber neuropathy and other seemingly completely unrelated test results that have been implicated in POTS, but I assume now that since they were more vague and the small fiber neuropathy is definite that they were just false clues.