Poll: Have you received autonomic testing for OI (POTS, NMH, etc.) symptoms

[halcyon]

And a followup question for those that answer yes: Did the results of your autonomic testing lead to prescription of useful treatment?

 

[Sushi]

Did the results of your autonomic testing lead to prescription of useful treatment?

Very much so, though I was lucky to see an autonomic specialist.

 

[alicec]

And a followup question for those that answer yes: Did the results of your autonomic testing lead to prescription of useful treatment?

No, though the neurologist did try hard. I just couldn't tolerate any of the drugs he suggested.

The best thing that I have found, which I did of my own accord, is LDN, which has a remarkably stabilising effect on my ANS.

I did find the visits to the cardiologist and neurologist useful in that they ruled out other serious problems - "your autonomic nervous system is just a bit unstable, there haven't been any advances in some 40 years in treating this".

 

[ahmo]

Mine improved markedly w/ enough B12, along w/ other neurological symptoms.

 

[Gingergrrl]

@halcyon Maybe you should add a third answer for people who have OI and autonomic symptoms but have not received autonomic testing (or received botched up or sub-par testing?) I wasn't sure if you were trying to assess if people are receiving the testing or if they are receiving the testing but it is then not helpful.

You know my story and I am not sure how to vote! Autonomic issues and OI to the level that I cannot stand/breathe for more than a few minutes is now my #1 symptom. I have seen two cardios who are supposed to be autonomic specialists but neither helped me.

The first I've seen since Sept 2014 and the one autonomic test he ordered for me was a TTT. It was a joke and the nurses couldn't even get the IV in my arm to start the test. They had 4-5 people try my arm and hand until they ran out of time and made me leave and come back later in the day. When I returned, they were so rushed that the entire test was 15 min maximum. In the middle of the test, the BP cuff broke so they discarded a lot of the readings. There was no EKG or any measurements taken except for HR and BP. My BP immediately dropped to the 70's/40's but the POTS did not show up b/c I was already taking Atenolol and had taken it that morning as instructed by the cardio.

The second cardio was a one-time consult and he said I was one of the sickest patients he had ever seen but he could not run any autonomic testing on me b/c I was already on Atenolol and Midodrine so the results would not be accurate. He said I had already tried all of the dysautonomia meds so there was nothing he could offer me. In reality I have tried three- Florinef which was horrible, a beta blocker, and Midodrine. He was very focused on "muscular dystrophy" b/c he has another patient with that diagnosis so it was in his mind and wanted me to do all of these invasive tests when I know I do not have MD! He asked me to fax him copies of my 23andMe and all kinds of info which I did immediately but never, ever heard back from him. It was a 3.5 hour drive to see him and a total waste IMO. I tried to contact him via his office multiple times but never heard back.

But... in approx one month I am going to the Autonomic Disorders Clinic at Stanford and seeing an autonomic neurologist (not a cardio) which I have not done yet. I have heard great things about this doctor from three separate people and have high hopes. He knows what meds I am one but still said that I can do some of the autonomic testing, blood tests, etc, and I think it is my best chance yet.

 

[Blue]

I had good testing but so far nothing has worked for me (Florinef, salt, Propranolol, Ivabradine, Midodrine). I had a positive QSART test and I am waiting now for the results of my skin biopsy. I wonder if anybody here with confirmed autonomic neuropathy received any kind of immunemodulatory/antiinflammatory treatment like IVIG, cortisone or even apheresis? There are random reports in POTS groups that this might be helpful, but it doesn't seem to be standard treatment.

 

[halcyon]

You know my story and I am not sure how to vote!

I think you should vote yes, despite the testing being perhaps invalid. My assumption was that the majority of people with OI symptoms were never offered or had no access to autonomic testing and I wanted to test that assumption.

 

[PNR2008]

I've had 4 TTT. The first two were in 92 and 94. Fainted on both within 7-9 minutes. I was put on Inderal and then an increased dosage. The last TTT I was on the Inderal and midodrine and did not faint but did not have a good stress test result, my skin biopsy was inconclusive for small fiber neurapathy and was advised to go into the sweat box. I declined.

Although POTS still bothers me at times, it seems under control even with 2 episodes of Vertigo and dizziness.

 

[Skippa]

I think you should vote yes, despite the testing being perhaps invalid. My assumption was that the majority of people with OI symptoms were never offered or had no access to autonomic testing and I wanted to test that assumption.

That's the impression I get too.

 

[Chrisb]

If my experience is anything to go by, these conditions cannot exist in the UK. They cannot exist because there is no evidence of their existence. There can be no evidence because of a refusal to conduct tests which might confirm the existence of the condition. Evidence produced by the patient can be dismissed as being merely numbers. Any suggestion that a protocol might be agreed whereby the patients self testing of blood pressure and heart rate might be recognised is dismissed.

The NHS behaves like a child in full hiding behind the sofa mode. Best not to look. You don't know what you might see. I find it hard to believe that this is down to the GP; it feels much more like policy issued from the centre.

 

[Sasha]

If my experience is anything to go by, these conditions cannot exist in the UK. They cannot exist because there is no evidence of their existence. There can be no evidence because of a refusal to conduct tests which might confirm the existence of the condition. Evidence produced by the patient can be dismissed as being merely numbers. Any suggestion that a protocol might be agreed whereby the patients self testing of blood pressure and heart rate might be recognised is dismissed.

The NHS behaves like a child in full hiding behind the sofa mode. Best not to look. You don't know what you might see. I find it hard to believe that this is down to the GP; it feels much more like policy issued from the centre.

I'm in the UK and after five years of trying to get diagnosed I've finally managed it (one TTT that I paid for privately and a later one at a syncope unit in a major city hospital). I've gone through four consultants before getting my diagnosis even though my GP, following a "poor man's TTT", agreed that something was wrong. I have NMH, not POTS, and I think that's what has made it harder to get the diagnosis.

Something is badly wrong with the system of diagnosis.

 

[bertiedog]

And a followup question for those that answer yes: Did the results of your autonomic testing lead to prescription of useful treatment?

Yes but it was through Breakspear, a private organisation in the UK. Dr Juli devised the test and it was found that I had less than 50% of normal oxygen in my cells but a slightly above range of CO2.

Dr Munro prescribed oxygen from a concentrator up to 3 times daily for an hour at a time so that is what I did. I purchased my own concentrator from EBay at 5 litres per minute and I remember the first time I used it I took my dog for a walk and couldn't believe how defined everything was. The trees and grass looked greener and so sharp. Three years later and my vision has stayed like this.

I now use my concentrator for an average of 30 minutes after each meal or if I am worn out after a walk. It has made a huge difference to my ability to do stuff.

With regard to OI my GP had already prescribed a low dose beta blocker and occasional Fludrocortisone. Both these help me hugely and in general I only need Fludro when it is hot but because I have adrenal insufficiency I also need tiny doses after periods of extreme stress.

Pam

 

[ukxmrv]

I paid for a test privately as they NHS refused to do it. No treatment as yet as I cannot afford to go back to the private doctor but I am trying a few things bought over the internet.

Had the "poor mans " version of the TTT done in the 90s (? after Rowe paper was published) by a doctor with an interest in CFS

 

[Apple]

I haven't had proper autonomic testing, but I've got a POTS diagnosis from a cardiologist after doing a stand test. Was told it was related to my ME/CFS, there was not much point doing a TTT and that the only treatment was beta blockers, which would probably make me feel worse (they do). I was basically told to learn to live with it - do more exercise, drink more water, yada yada. Been pretty much ignored ever since. Dismissed as anxiety/deconditioning whenever I try and bring it up to anyone else. I just hate doctors/hospitals so much and couldn't face going back to see him again.

I want to get properly tested this year, but my symptoms fluctuate (some days it settles around 90-100, other days it's at 130-150) and i'm worried they'll catch me on a 'good' day and just dismiss me again. :/ I just don't have the energy to argue with them anymore.

I really like the idea of going to breakspear and receiving oxygen @bertiedog Does it help with air hunger? Not sure i'd want to buy it from ebay though(!)

@ukxmrv how much did you pay for the TTT?

 

[PatJ]

I'm in a bind for testing. I don't think my local hospital is big enough to have a tilt table so I would have to travel 1800 miles to the nearest large city with a TT. I can't stay upright long enough to even make it to the doctor at the moment so a plane trip is out. I can't travel lying down due to motion sickness.

Even if I could get a TTT at the local hospital it would need to last for at least an hour. My pulse pressure gradually narrows but takes roughly 30-45 minutes before I start feeling bad enough to lie down. Most TTT rarely go past 15 minutes.

I've tried most of the basic recommendations to get my BP up but none help more than a little (inclined bed, compression stockings, compression wraps up to 50mmHg, Yohimbine, herbs, etc.) My plan at the moment is to make it to a doctor and hope s/he will prescribe fludrocortisone (and hope I don't get any of the nasty side effects.)

 

[bertiedog]

really like the idea of going to breakspear and receiving oxygen @bertiedog Does it help with air hunger? Not sure i'd want to buy it from ebay though(!)

I did hire their oxygen concentrator first to know that it was going to help but it was a ridiculous weekly amount whereas my current portable one from Ebay is now listed at only around £240 (I paid around £330 for mine 2 years ago as I wanted a portable one). They are all made in China anyway! The key thing is to check that they deliver a minimum of 5 litres per minute, anything under that is unlikely to do anything much.

I have never suffered with air hunger and don't really know what this is, sorry. I am using mine now because I have come home completely knackered after a 2 hour stint at our local Visitor Information Centre. Doesn't sound very much but I was up and down stairs plus filling up leaflets and answering questions plus the time to get there and back. There is no way I could do this voluntary work without my concentrator to help me recover. I also run the local Fibromyalgia group and run monthly meetings and again no way could I do this without my top-ups!

BTW I had the cheaper version of the autonomic testing around £200 at BS and I had a short swim in the morning and no rest between that and the testing at 2 pm so I really was at my worst for the test so wasn't surprised my results were very bad. In fact Dr Munro told me that my results showed that to be in such oxygen deficit in my cells was "very bad for you". Without the test I wouldn't have had a clue that this was the case.

There is an interesting book on cellular hypoxia written by Dr David Bell, well worth reading.

Pam

 

[ukxmrv]

@ukxmrv how much did you pay for the TTT?

Will send you a PM @Apple

 

[TigerLilea]

I had the standing test but don't have any OI symptoms. The doctor did the test as part of his CFS testing.

 

[alicec]

Did the results of your autonomic testing lead to prescription of useful treatment?

Completely forgot to say in my previous post that low dose atenolol, recommended by the cardiologist, has been very successful in controlling tachycardia, though no other aspect of OI.

 

[Liz Willow]

I tested positive on two separate occasions via tilt table testing. Beta blockers either did nothing or I couldn't tolerate the side effects. I finally convinced a doctor to prescribe fludricortisone. It made tremendous difference in my life until recently.