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As some of you may already be aware that my cardiologist won't commit to saying that I have PoTS, but has told me to do tilt training and also take Ivabradine. She has informed my GP, as there is a restriction on supplying Ivabradine for certain conditions, but she told him it's for Inappropriate Sinus Tachycardia and PoTS. She has told me that I haven't got either of these. She also failed to write that I have syncope and pre-syncope and other pronounced signs of autonomic dysfunction. Now reading a line in her letter she states, 'Postural tachycardia but no overtly POTS syndrome.' Can anyone tell me what the difference is?

Thanks everyone for your replies and taking the time to get back to me. I know I am not alone in this and that is a great comfort to me. I had to come off the Ivabradine as it was making me very ill; upsetting my nervous system and gut. I am very disappointed. I am now giving my body a break from it and the beta-blockers. I will see what happens with my HR and BP and monitor it myself. What I found strange was although the consultant wouldn't commit to a diagnosis she spoke to my GP surgery and told them I was taking Ivabradine for Inappropriate Sinus Tachycardia and POTS, of which she told me I had neither. I think that they didn't see the TTT as being conclusive enough. In a follow-up letter, she wrote to my doctor, mentioning my symptoms and she left out the syncope and the fact both consultants stated that I had autonomic dysfunction. I hope to see another GP soon, as my last one has left the practise. I will see if there is a possibility of a referral. I have in mind one or two consultants to check out and I hope to get some full autonomic tests done. I need that diagnosis as I am floundering. I would like to maybe see two consultants who have slightly different specialist fields. I think that would be the best. Fingers crossed.

Could be your nervous system reacting to the stimulation.

Hi and welcome! Yes, this website is a great place to be

Hello and welcome! I had ME after Glandular Fever or what was called ME/CFS as there was no other explanation for it 31 years ago. I now think it was POTS as the symptoms are pretty much identical. I found out last year that I was born with Ehlers-Danlos and have joint hypermobility. These conditions are linked. POTS/autonomic dysfunction became worse 8 years ago when the BP and HR issues became a lot worse.

As I'm on Nortriptyline at night I tend to sleep OK most of the time but regularly wake up and sometimes have the adrenalin surge, fast heart rate and nausea/dizziness. I think this is the norm for most people with autonomic dysfunction. I know Professor Graham, who is a specialist in EDS/POTS said that we have regular wakefulness in the night. I have to have 7 hours and if I have more then I feel dreadful all day.

I can't use them as the nerve pain is too intense in my legs and feet.

Hi circuscat! Welcome to the forum. Crikey most of your symptoms are like mine even the eye issues. I have POTS/Autonomic dysfunction issues and this year got diagnosed with Ehlers-Danlos 3 or Hypermobility Syndrome, which is genetic; hence the loose joints and dislocations. The ME/POTS originally came on in 1984 after Glandular Fever. Within a year the IBS started. I know that EDS/POTS/ME/IBS and neuropathy are all linked. If you want to personal message me you are very welcome. I know how hard it is to face these horrible problems. That's gastroparesis which causes slow motility in the bowel as the nerves aren't working properly and the structure of the bowel is affected by faulty collagen which is EDS. I find this triggers my headaches and when my bowel is full I have extreme pain in my head and eyes. I use suppositories on a regular basis to ease the situation. I also have terrible nausea and sleep issues. Many people with autonomic dysfunction, POTS/EDS have these problems. I am now gluten free to help with my gut problems. Gluten and dairy aren't good for the body. Gluten harms nerves and dairy causes inflammation. You have to stay rigidly on this diet for many months before you can see the benefits as gluten leaves inflammation for a long time and the body has to heal. I hope you get some answers you need x

Has anyone looked into the gluten link with MSA? I wonder if there is something in that as gluten attacks nerves.

I am gluten free. http://deliciouslyella.com/

I have a mix of all the autonomic dysfunction issues. BP, HR, IBS, Syncope, Pain etc all seem to be the main problems plus many other problems such as chronic nausea. I guess all the nervous system, circulatory systems are all messed up and therefore nothing is working properly. I have issues with my bowel, bladder, liver, heart, lungs etc....

I have been modifying my diet in recent months and I am strictly vegan, no sugar, gluten or processed foods. I have stocked my cupboards with gluten-free flours, apple cider vinegar, tamarind paste, nut butters, seeds and nuts etc. I also start meals from scratch. Mum has been great helping me as I cannot do very much in the kitchen. I think things are beginning to change with my health and I will add supplements again once my body has adjusted fully. I already knew that dairy upset me and as it can cause inflammation in the body, I was glad to drop it. I was also suspicious of gluten as I know that it can harm nerves. As my nerves are inflamed all over my body, I thought it best to cut it out of my diet. I know that sugar is bad as it ages the body. I've never been a fan of eating meat, so that wasn't an issue. Has anyone else worked on this diet? I was also inspired recently by 'Deliciously Ella' blog created by a young woman who had POTS and was very ill and got herself well through diet. It may not work for everyone and I am by no means cured. It took Ella 18 months before she realised she was well enough to come off her medication. I used to be on a similar diet for 11 years and then lapsed and soon after the worst of my symptoms developed. I wonder if there's something in that? http://deliciouslyella.com/

Blood pools in my hands, feet, legs and even my boobs. Worse as day progresses. I also have neuropathy with it and that gets worse the more blood pooling there is.

Yes I have these and I know they are part of the autonomic dysfunction. There is a rush of adrenalin and the heart pounds, you feel sick and dizzy as you are woken up abruptly and feel awful. This came on 8 years ago for me and they are worse when I am stressed. AngieP....I wouldn't rule out EDS 3 as there is a connection. In my early years I would probably have been told hypermobility and nothing else. The IBS and other symptoms came on with Glandular Fever and ME in 1984. The other symptoms kicked in 8 years ago and now I fit the picture of EDS 3.

Welcome to our forum.

After the fiasco of my Tilt Table Test where the attending doctor and technician told me I had POTS and Neurocardiogenic Syncope. The consultant cardiologist reviewing my test result said no to POTS and anything else. I disputed the test report, so the referring cardiologist and the TTT reviewer met up with me and after telling them again all of my symptoms have ruled out POTS, NCS and even Inappropriate Sinus Tachycardia, but agree I do have autonomic dysfunction. They have agreed in theory that I have symptoms of all these conditions but the TTT did not reveal anything conclusively. I have looked at the TTT graph and my heart rate does increase significantly but they say because I was already tachycardic the increase was not enough and when the spray was administered one particular spike on the graph ruled out NCS. I would have thought that as I have Ehlers-Danlos and ME, the likelihood of me having POTS is pretty high. They have put me on Ivabradine. See how I go with that. I also told them that I had no other option but to go to see a specialist in London to seek a diagnosis as I had hit an impasse as regards my local hospital. They would not refer me so I will have to pay privately. It will cost an arm and a leg to go there and have testing done afterwards. Not happy to say the least. Has anyone else had to go to consultants who deal with these conditions after being knocked back by less knowledgeable cardiologists who aren't prepared to make a dx or explore further what is wrong?

Thanks very much indeed. I sent a full and honest letter to my cardiologist and she wants to see me again next month. She believes that because I already have constant tachycardia that it isn't POTS. She says I do not fulfill the criteria for POTS. I find this odd as I have all of the symptoms of POTS. Does anyone else have tachycardia all of the time?

Hi Guys. Do you have tachycardia all of the time? My HR is around 85-100 when resting/sitting and then with standing and moving around it goes to 105-150+bpm. Anyone else get this as it appears I am definitely NOT alone in this and yet my cardiologist is saying I do not have POTS as I was already tachycardic before I had the TTT.

Yes, it's sounds like some people either do not know enough about the condition or are loathe to make any diagnosis. I was definitely told POTS at the end of the test and NCS. I didn't fully pass out but my legs buckled and I was sweating, had nausea, dizziness and weakness. They haven't mentioned pre-syncope or NCS in the letter to the cardiologist I saw. I have now read on 23 websites, including the NHS one, that more than 120 bpm is POTS and mine went up to 130 bpm. I have recorded higher than that at home and if I had been moving around it would have been in the region of 150+ bpm. The thing I find astonishing is that notes have been made at the hospital about how debilitating this condition has become and now investigation has ground to a halt. No follow-up or anything else. I have informed my cardiologist via their secretary that I am not happy with the report and she 'may' review it. If not I shall have to somehow get to see someone in London one who does know what they are doing and can link the EDS, ME, POTS and neuropathy.

Thanks for your reply. I think if I don't get anywhere with the GP or hospital then I may have to go privately to prove that I do have something going on with my ANS. The people who did mine spoke during the test but afterwards the doctor said I had POTS and gave me a Tilt Training instruction leaflet and the technician wrote at the top that I also had NCS. I think I am angry that I was informed that I had POTS and NCS and then seeing this letter really threw me. I've only had the TTT done and nothing else at all. I think that's all they would offer at that hospital. I was shocked because it was cut and dried or so I thought. My body reaction to what was going on showed that something was not right and then the person who wrote the letter mentioned the physical problems I had as well as my BP and HR changes, but then simply stated no POTS and that was it. I want to to get this checked out because my lifestyle is really being restricted with the symptoms I am suffering from. I think it bears some investigation. How did you get on in London? Did you get the full autonomic testing done over two days? I would like to have that done. Many thanks!

I have ME, EDS and Neuropathic pain. I have been experiencing autonomic issues for some time such as dizziness, problems being upright, sweating, fainting, nausea etc and I know my HR rises the longer I am upright. If I move around my BP and Heart go nuts and my breathing is affected. I have recently been diagnosed with EDS. On seeing the cardiologist she noted my symptoms and sent me for a Tilt Table Test two weeks later. I had quite a rough time during the test with profound nausea, dizziness and worsening nerve pain in my legs and heaviness. The physiologist/technician and the doctor in attendance said I had POTS and the doctor said it was linked to EDS and the glandular fever I had back in 1984 which brought on the ME and autonomic issues. I was also told I had Neuro-Cardiogenic Syncope. The results had shown these things. Later a letter was sent to my GP from another doctor via his secretary 'Authorised by secretary not verified by doctor', which I thought a bit strange and this letter states that I do NOT have POTS. No mention on NCS or anything else. I am now confused. My HR did definitely rise and which is stated in articles if it goes about 120 bpm, which mine did, then that should be an indicator of POTS. So POTS totally dismissed by this secretary/doctor and yet I was told that I have it and NCS and now I am back to square one. I am so upset as I was hoping to be started on Ivabradine as I feel absolutely awful. I am able to do very little because of the heart, BP and breathing issues, plus the dizziness, weakness and nausea. I am even doing recumbent cycling and Tilt Training to help, taking lots of water and salt and still feel awful. I think I will have to pay privately to go to London and get the two-day full autonomic testing done as my experience locally has not been very good.

Hi barb10 Could it be to do with nerves or circulation in the joint so may well be the congestion the doctor suggests? You can get itching and stinging if there are issues. Hard to say really. On the other hand varicose veins do sting. I get that in the couple of places I have problems. One vein is red and itchy/stingy. Sometimes it seems to flatten and disappear and other times it feels like I am sitting on barbed wire. If your problem is varicose veins then the best thing is to elevate legs and not stand too long as this causes congestion and stagnation in the veins. Lots of my friends who are hairdressers have varicose veins and some have have had surgery. Mine haven't popped too much but when I mentioned the one on my btm to my doctor she said they may not want to do anything about it because of the EDS. I think she's a little confused with vascular EDS though. I hope you can sort it out and feel more comfortable. TC

I think it sounds like varicose veins, barb10. I have developed a couple in the last year and I think they are part and parcel of EDS and circulation issues. One is in a place where it is very uncomfortable as I sit on it! I may be wrong but there is a link with EDS and varicose veins: What are the main symptoms and signs of Hypermobility Ehlers-Danlos Syndrome? There can be considerable variability in the condition, even within the same family. Some people have joint hypermobility but do not have any other symptoms. Others can be more severely affected. Individuals with HEDS may have the following features: Joint hypermobility with the joints having a wider range of movement than usual.Loose, unstable joints that can lead to dislocations and subluxations.Joint pain and fatigue.Easy bruising.Gastrointestinal dysfunction.POTS (postural orthostatic tachycardia syndrome) causing fast heart rate, dizziness and fainting.Mitral valve prolapse, a heart valve abnormality which is usually only mild in HEDS.Uterine, rectal or bladder prolapse.Urinary dysfunction.Varicose veins.- See more at: http://www.ehlers-danlos.org/what-is-eds/types-of-eds#hypermobile I hope that may help? TC

Chemotherapy can often bring on neuropathy. I have peripheral and autonomic dysfunction and POTS. They seem to be linked so your symptoms could tie-in with this. I do know of some people with POTS who have low heart rate.

Yes cold extremities for me when the temperature drops and my hands and feet burn most of the time as do my arms and legs. My extremities flush up purple-red and the blood pooling can get very painful with the neuropathic pain. In extremely cold weather my toes go black-purple. I rub them to get the circulation back or use the neurostim. If I stand for very long the pain and discomfort gets worse and the blood pooling and neuropathy increases. The longer I stand I get all feeling of passing out and sometimes do. I have been diagnosed with POTS, Neurocardiogenic Syncope and EDS. I also have ME. I had the Tilt Table Test and I am still waiting to see the cardiologist so I can try Ivabradine which lowers heart rate. I have sinus tachycardia and have had it for years. My heart rate gets faster the longer I am upright. My BP can get very low and then other times too high.