UK Members - who diagnosed your autonomic dysfunction? (Very long)

[CantThink]

Hi all

I'm really interested to know how UK members got diagnosed with any form of autonomic dysfunction. Did your GP pick up on it and refer you to someone? Were you already seeing a specialist who picked up on it? Did you try to get diagnosed and highlighted symptoms? What type of specialist did you see?

The reason I'm asking is because I have had symptoms of something related to cardiac or autonomic dysfunction for long time.

Previous doctors related it to autoimmune thyroid disease (specifically hyper) as the obvious symptom was tachycardia. I was put on beta blockers. After a long time of getting nowhere with my endocrine issues and some extremely poor treatment coupled with rude/ignorant doctors, I gave up. I stopped taking the beta blockers and didn't pursue further thyroid testing.

During intervening few years, I continued to experience daily tachycardia which worsened with standing, walking, any activity that was strenuous such as washing myself/getting dressed/getting up the stairs/preparing food etc.

I also started to notice that sometimes when I lay down and felt very weak/poisoned my heart rate was the other way - in the 40s or 50s. Weirdly I have had brief periods of this when standing up. In both cases it feels as if my heart resets itself to a faster (over 60) bpm, but sometimes it doesn't seem to work so it keeps going low and then trying to reset to a more normal speed.

I couldn't face the doctors for this - I just felt they wouldn't believe me so I left it.

In October 2013 I got up from my bed to take my dog to the toilet. I was with my family on their river barge so my bed was very low (the bottom of a set of bunks), then I walked down a short piece of corridor and to get out of the boat you have to climb a flight of very deep stairs. I remember climbing the stairs and getting to the top, the next thing I remember is 'coming to' on the floor at the bottom having presumably passed out and I had banged up one side of my body plus my head (on the radiator/wooden boat interior stick out bits). My parents were standing over me.

I had been feeling very unwell before this and was entering a particularly
bad M.E. period of worsening of which I still haven't managed to get out of.

I also had some work done at the dentist and they tilted the chair low so that my head was low and my feet/legs much higher than my head. When they righted the chair, I went to stand up and just managed to stop myself from fainting by sitting plop back down and putting my head forwards towards my knees.

Typically at home my BP is either low normal or low. When I go to the appointments it's always on the high side of normal - I definitely get white coat syndrome. The BP seems high to me but they said it's not - I just think it is high, because mine is normally so much lower.

Fast forward to 2014 and I've been in the process of getting sorted out to
have gynae surgery - with lots of hospital and doctor appointments. At two of these they did the usual checks for weight BP etc and it was noted by the nurses that my HR was very low on one occasion and at the next appointment it was very high. No one did anything to follow it up. I did feel super dodgy with the very high HR.

Wednesday just gone, I had my pre op assessment. The nurse started to check my BP and shoved the oximeter on my finger. The machine went wild (I knew it would be bad as I felt very ill) so she looks at it and my resting HR was 158 (but prior to this I had been sitting in waiting room then gotten up and walked into the room which was probably a 25 feet walk or so. Then I'd sat down for a few minutes).

She asked to do an ECG (which I knew would be fine/just show tachy) and she did this at the end of an hour long appointment so I'd been sitting down then for a while, and she let me lie on the couch for about 5 minutes before doing it... I started to feel a wee bit better and it showed sinus tachycardia 125 BPM.

The nurse was really lovely and couldn't understand why doctors have 'left you like this' - towards the end, when I was on the couch about to have the ECG, I explained about the M.E.&me versus doctors issue and how I don't feel able to seek help due to the NHS approach to it and doctors previous treatment of me. She understood what I meant and said: "well you tell them I have sent you" and she gave me a copy of the ECG to kinda back me up.

End result was hospital decided: I can't have surgery until I see doctor (GP). Annoying thing being that I've waited 11 months for this surgery and seeing a GP is a nightmare as I can never see the same one twice. So I saw one today explained situation and got beta blockers - 40mg propranolol so have cautiously taken half (my choice she told me to take 1 but I was worried about low HR versus the beta blocker!) I do feel better for taking it.

The GP was okay - said I probably need a cardiology workup but heart itself sounds okay rhythm wise, except when she listened it was 136 BPM. She is sending me to get thyroid, electrolytes and C reactive protein blood test done on Monday. I'm exhausted by all these appointments and it's really bad timing as I should be resting for the surgery which is in 12 days time.

My concern is:

A. if the bloods come back normal and GP wants to refer me to a cardiologist... Is there any point - will they be anti M.E. (I never usually mention it unless pressed/asked, but GP referal letters state it) and will they not pick up possible autonomic issues?

B. In light of 'A' am I better off trying to pursue a possible autonomic angle - as in either self refer or try to pursuade GP to... If I could find a specialist in the UK? If 'B' is better should I eliminate cardiac issues first but not hope for any autonomic consideration, and then pursue option 'B'?

I hope I make some sense. I'm sorry this is so long - it has taken me hours to write.

 

[Sasha]

Sorry to hear you're having such troubles!

Prof Julia Newton at Newcastle specialises in orthostatic intolerance (which it sounds as though you have) and ME. She does a lot of biomedical ME research, a lot of which is funded by ME Research UK. I'd ask your GP for a referral:

http://www.ncl.ac.uk/biomedicine/research/groups/profile/julia.newton

 

[Sidereal]

I don't think there's any value in seeing a regular cardiologist for dysautonomia. They don't know anything about it and you risk getting more abuse heaped on you. Chances are high that they will tell you that your sinus tachycardia is due to anxiety because they are clueless about orthostatic intolerance and postural tachycardia syndrome (POTS).

 

[Revel]

@CantThink, I quite understand your concerns and can very much relate to your NHS woes.

I had symptoms of autonomic dysfunction for 40 years before receiving a diagnosis. I saw several cardiologists in this time, not one picked up any problem. My ECGs and blood pressure readings were always taken when I was laid down, so nothing wildly abnormal was ever noticed.

One time, I collapsed minutes after an exercise stress test and the cardiologist implied that I was faking it for attention. He offered no treatment, but did suggest that I discuss my issues with a psychologist. At this point, I gave up on the medical profession for several years.

When the severity of my symptoms increased to the point where I had to give up work and driving, I decided to give it one last shot. My GP is not 'ME-friendly', but when I suggested that I might have POTS, he was very receptive. I was referred to the local NHS syncope clinic, where I was diagnosed via tilt table test. It was the first time that I had ever received a standing bp test (which showed clear issues), and a 48 hour ECG mobile monitor.

My GP latched onto the POTS diagnosis as the answer to all my symptoms, thus proving that my ME did not exist. However, my consultant at the syncope clinic wrote to him confirming that I have ME and POTS, which he reluctantly appears to have now accepted.

The patients at the syncope clinic are generally elderly as they naturally have a higher degree of autonomic dysfunction than younger folk. Appointments are short in time and limited to a maximum of 3 per year, which isn't nearly enough support for me at present. However, I'm just grateful that I finally have irrefutable proof that I have a physiological illness.

 

[ukxmrv]

I can't read your post as it is too long but I wanted to answer your questions at the start and finish

1. Who diagnosed POTs. My doctor with an interest in CFS and ME did a poor mans TTT in around the early 90's. A private CFS doctor did another test with a Holter type monitor around 2001. I asked a NHS Consultant at a "CFS/ME clinic" for a formal TTT in 2011. I had not been physically well enough to travel to hospital appointments for years or would have done something sooner.

They referred me to a Cardiology Department who fitted a 24 hour monitor and then sent a report to the CFS Clinic saying that there was no sign of any problems. They refused a TTT. They refused to see me again. I paid for a private one in the end.

A - it's going to depend on the Cardiologist that you see. It's the usual postcode lottery and mine was not a winning ticket.

B - I would see either a known POTs Specialist and research them before you go to an appointment. If you see the wrong one as I did the NHS will then block you seeing another. There is no given and easily enforecable right to a second opinion. You are then faced with fighting you GP, your PCT etc to try and see someone else. Sometimes this works for me and sometimes it doesn't.

 

[JamBob]

Don't accept a cardiology referral (they're not trained to deal with POTS) - try and get a referral to an autonomic specialist eg. at the Autonomic Unit in Queens Square, London (they offer 4-5 days of inpatient testing) or to Julia Newton in Newcastle.

If you see a cardiologist - you'll probably get more abuse.

 

[ukxmrv]

Is Queens Square safe for a PWME to be seen in?

I was referred there after being injured in a road traffic accident. (My injuries included a close head injury which was documented by a London A&E department and I had been knocked unconscious).

Once Queens Square knew that I had ME they refused to do any testing of the physical problems I had experienced after the RTA. I thought I was being seen to investigate the problems I had after the RTA but what happened is that I saw a Psychologist (who administered a WASR ) sp? and then without any physical examination tried to label me with malingering/attention seeking/ psychological motives.

I'd not feel safe going back there again unless I know that I would get a fair examination.

 

[JamBob]

Is Queens Square safe for a PWME to be seen in?

I was referred there after being injured in a road traffic accident. (My injuries included a close head injury which was documented by a London A&E department and I had been knocked unconscious).

Once Queens Square knew that I had ME they refused to do any testing of the physical problems I had experienced after the RTA. I thought I was being seen to investigate the problems I had after the RTA but what happened is that I saw a Psychologist (who administered a WASR ) sp? and then without any physical examination tried to label me with malingering/attention seeking/ psychological motives.

I'd not feel safe going back there again unless I know that I would get a fair examination.

That's terrible - do you have any idea what was written in the referral letter? I am sure sometimes the referrer can negatively influence the people who receive the referral.

I never mention ME/CFS when I see doctors (due to the expectation of abuse) so I can't say. All I know is that at QS they offered me 4 days of inpatient testing at the autonomic unit. In the event, I was too sick to go in for the tests, but the kind of thing they offered was not psychological but focussed around tilt table testing. This was some years ago though.

 

[Sidereal]

I haven't been to Queen's Square but I saw a neurologist who trained at their autonomic unit. I was diagnosed with POTS by this person and the suggested treatment was exercise.

 

[CantThink]

Sorry to hear you're having such troubles!

Prof Julia Newton at Newcastle specialises in orthostatic intolerance (which it sounds as though you have) and ME. She does a lot of biomedical ME research, a lot of which is funded by ME Research UK. I'd ask your GP for a referral:

http://www.ncl.ac.uk/biomedicine/research/groups/profile/julia.newton

Thank you! That's a long way away, but might be worth it for actual targeted testing and help.

 

[CantThink]

Don't accept a cardiology referral (they're not trained to deal with POTS) - try and get a referral to an autonomic specialist eg. at the Autonomic Unit in Queens Square, London (they offer 4-5 days of inpatient testing) or to Julia Newton in Newcastle.

If you see a cardiologist - you'll probably get more abuse.

This - the abuse thing is exactly my fear! You know when you think you'd rather suffer than go through that... That's where I was at.

 

[CantThink]

I don't think there's any value in seeing a regular cardiologist for dysautonomia. They don't know anything about it and you risk getting more abuse heaped on you. Chances are high that they will tell you that your sinus tachycardia is due to anxiety because they are clueless about orthostatic intolerance and postural tachycardia syndrome (POTS).

Thank you. This is exactly what I thought and my concerns.

 

[Hell...Hath...No...Fury..]

Sorry i couldnt read all of your post but i'd deffo not bother with a cardiologist just in case you waste your time.

I diagnosed myself with POTS thanks to people on here, then printed out a few consecutive days worth of home tilt test results to explain my point to the GP.

She then referred me to a hospital that had tilt tables that dealt with aging and geriatrics. I was worried that they wouldn't understand POTS or ME even though they did tilt tests. I was completely right, i proved i had POTS but had to go through hours of hell and insults and no POTS diagnosis by idiots who had a problem with ME.

Just before this i noticed that Julia Newton works in the same department of that same hospital so i contacted her directly and asked if she would see me with a referral and she said yes.

Saw her 6 months later and she diagnosed me instead based on tilt results. She's lovely and well worth seeing if you can. Though i'd avoid the other people in the geriatric department like the plague unless you want a few month relapse caused by them.

I dont know where in england you are so travelling might be too much but i'd go to Dr. Newton if at all possible.

Best of luck with it.

 

[CantThink]

I can't read your post as it is too long but I wanted to answer your questions at the start and finish

1. Who diagnosed POTs. My doctor with an interest in CFS and ME did a poor mans TTT in around the early 90's. A private CFS doctor did another test with a Holter type monitor around 2001. I asked a NHS Consultant at a "CFS/ME clinic" for a formal TTT in 2011. I had not been physically well enough to travel to hospital appointments for years or would have done something sooner.

They referred me to a Cardiology Department who fitted a 24 hour monitor and then sent a report to the CFS Clinic saying that there was no sign of any problems. They refused a TTT. They refused to see me again. I paid for a private one in the end.

A - it's going to depend on the Cardiologist that you see. It's the usual postcode lottery and mine was not a winning ticket.

B - I would see either a known POTs Specialist and research them before you go to an appointment. If you see the wrong one as I did the NHS will then block you seeing another. There is no given and easily enforecable right to a second opinion. You are then faced with fighting you GP, your PCT etc to try and see someone else. Sometimes this works for me and sometimes it doesn't.

Sorry my post is so long. I didn't expect everyone to read it (more background info/my own record).

Your experience with NHS echoes mine but with other issues. I am very conscious of the dead end one can end up in - not to mention the stress of being dealt with like this and having to attend all those appointment.

How did you find the private option? I'm not averse to going privately if necessary, but I'd only want to do that if it was going to be worth it both financially and in terms of being treated properly.

 

[CantThink]

Don't accept a cardiology referral (they're not trained to deal with POTS) - try and get a referral to an autonomic specialist eg. at the Autonomic Unit in Queens Square, London (they offer 4-5 days of inpatient testing) or to Julia Newton in Newcastle.

If you see a cardiologist - you'll probably get more abuse.

Thank you!

 

[CantThink]

Is Queens Square safe for a PWME to be seen in?

I was referred there after being injured in a road traffic accident. (My injuries included a close head injury which was documented by a London A&E department and I had been knocked unconscious).

Once Queens Square knew that I had ME they refused to do any testing of the physical problems I had experienced after the RTA. I thought I was being seen to investigate the problems I had after the RTA but what happened is that I saw a Psychologist (who administered a WASR ) sp? and then without any physical examination tried to label me with malingering/attention seeking/ psychological motives.

I'd not feel safe going back there again unless I know that I would get a fair examination.

Ohhhh myyyyyy.... That's awful. I'm so sorry you went through that. I definitely would not want to go there!!!

 

[CantThink]

Sorry i couldnt read all of your post but i'd deffo not bother with a cardiologist just in case you waste your time.

I diagnosed myself with POTS thanks to people on here, then printed out a few consecutive days worth of home tilt test results to explain my point to the GP.

She then referred me to a hospital that had tilt tables that dealt with aging and geriatrics. I was worried that they wouldn't understand POTS or ME even though they did tilt tests. I was completely right, i proved i had POTS but had to go through hours of hell and insults and no POTS diagnosis by idiots who had a problem with ME.

Just before this i noticed that Julia Newton works in the same department of that same hospital so i contacted her directly and asked if she would see me with a referral and she said yes.

Saw her 6 months later and she diagnosed me instead based on tilt results. She's lovely and well worth seeing if you can. Though i'd avoid the other people in the geriatric department like the plague unless you want a few month relapse caused by them.

I dont know where in england you are so travelling might be too much but i'd go to Dr. Newton if at all possible.

Best of luck with it.

Oh this is really helpful, thank you! I'm so sorry you were treated like that and made so unwell. I think it's terrible we have to worry about being mistreated - it makes going to appointments so stressful.

Have you been able to treat the POTS?

I'm down south, but I think I'd be prepared to travel and stay overnight for a couple of nights if it would enable me to improve somehow in the long run.

 

[Hell...Hath...No...Fury..]

@CantThink the idiot doctors prescribed me beta blockers, 4 litres of water a day and compression stockings (even though they wouldn't diagnose POTS!)

The beta blockers causes me multiple blackouts followed by hours stuck on the floor and the 4 litres of water a day resulted in having to lie in the bath next to the toilet day and night so i was close to the toilet.

The compression stockings are physically impossible for me to put in or take off without having a heart attack. So i'm looking into those devices that help you out these things on.

When i saw julia newton, she says 4 litres of water is way to much and to just go back to what i was already doing 2 to 2.5 liters a day, increased salt which i was already doing and swapped the beta blockers for calcium channel blockers.

My heart rate monitor has broken so i cant judge how well they're working but theyre not making me ill at least.

Dr. Newton says most people end up taking no meds in the end because the side effects are often worse than the POTS but i'm welcome to try different things out.

I also queried her about low blood volume and she's currently trying to get funding for research for this as its something she's interested in so i'll be volunteering my services for that if she ever gets the go ahead.

I'd offer to put you up if you stayed overnight but me thinks i'd be a completely rubbish host lol

The idiot doctors did me a favour by not diagnosing me because at least my diagnosis is by Julia Newton now which is always a bonus

 

[Jenny]

I was diagnosed with autonomic dysfunction at the Breakspear. The testing was very expensive and I was told to play tennis and take 25 different supplements! I took the supplements for 9 months, again at great expense, and got no improvement at all.

 

[helperofearth123]

I was diagnosed with mild POTS by the Royal london hospital for integrated medicine which I think is the 'queens square' place people are talking about. I did 2 days of heart rate + bp monitoring. They recommended compression stockings which were expensive and stretched after a week as well as rubbed and barely made any difference so I gave up on it. They also said to try putting salt in my water which I tried but felt no difference so gave up on it. They also said I try buying a recumbant exercise bike and to exercise on it as much as possible. I did that for a few weeks and felt no difference and gave up on it. Also they said there are certain poses I can do to stop myself fainting if I need to except I barely even get head rushes as my POTS is mild, only a small part of my CFS so I those were no use. They told me all this straight away before doing all the testing. Then I waited about 8 months to do the testing, when they confirmed immidiately that I had mild-POTS. Then I waited almost a year for them to go through the results in detail and tell me, again, that I had mild POTS and I needed to to recumbent exercise. I told them I had neck massages last year which were amazing and suddenly allowed me to walk 3 hours a day (up from 5-10 mins a day) and that the POTS went away during that time (I measured my heart rate) and that I crashed when I caught the flu. They had nothing to say in response and said I needed to press on with an exercise program anyway and that it can take 10 years to get better, but that people usually do. I told them about my other multiple big temporary improvements where I did loads of exercise and it didn't stop me relapsing, so I know doing exercise isn't the answer. They just repeated that I needed to do it. Useless.