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Hi Don I have bladder leakage/full incontinence (and some bowel issues, too). Yes, it fairly common, mainly in diabetics with autonomic dysfunction, have such issues. I don't have diabetes so doctors were not brilliant will dealing with my case. I use incontinence pads and pants. The autonomic neuropathy has caused lung, bladder, bowel and liver problems for me. So far all neurologists have been unhelpful as regard this and the peripheral neuropathy I have. Do you know what is causing your autonomic neuropathy? If it is diabetes for example, if the diabetes is more controlled it may improve. In my case with POTS, if my POTS improves the bladder issues do improve. I hope that you can get some help here.

Hi. In my last relationship (we are still friends), my interest in sex did wane after a while, mainly because of the fatigue of the POTS/EDS and other issues. The dysautonomia also affects the lady parts and can change the level of sensation there. Also if I o******d, it made my health symptoms much worse. It was a bit tricky. Hugging was important for both of us and that never waned. Making sure your partner is well enough and if in the right mood is important. We did find that lying in the spoon position was less demanding on the body. I think finding a good position that doesn't cause pain or other symptoms is a good idea. Talk it through and see if you can find a way that suits both of you without pressure.

I started on the recumbent bike and floor exercises. I did these for many months and increased the times and types of exercise. My knees began to hurt with the recumbent bike (I have EDS), so I opted for gentler movements and not too much stretching on the joints. I have had to have a break from longer sessions because of migraines, but I hope to pick up again if I can get them under control. Take it easy at first and gradually build up.

Hi Everyone My headaches have been worsening since December and I am now at the point that they look like migraines and cluster headaches. My eyes get pretty puffy and the pain is so intense now, with vice-like pain, with shooting nerves sensations. I have neuropathic pain, so have been on Nortriptyline and Gabapentin for 10 years. I am on a very low dose of Ivabradine (2.5mgs per day, no more as they upset my bowel) for POTS and nothing else. The head pain can go on for days and can fluctuate. Last week I had it for 4 days and then 4 days break and it's been back again since Tuesday. I have tried to see my GP many times this year but have been too well to see them and also losing my dad, put my own health and welfare on hold. I am attempting to go tomorrow and see someone at the surgery. I have read that with EDS/POTS there is a higher incidence of migraine-type headaches because of abnormal cerebral vasculature. I know my bowel is implicated somewhere a long the line, too. Has anyone experienced these headaches, which render me totally incapacitated for days? Has anyone found relief with meds and other pro-active therapies and tips? I cannot tolerate codeine or morphine. I don't eat many of the food triggers, although have have to stop eating garlic and onions, but I don't drink, smoke, eat dairy or processed foods. Any help would be much appreciated TCP

You're not alone, I get very short of breathe even after minimal exertion. I had a lung function test and my lungs had apparently shrunk as compared to previous x-rays. My lung volume was down and I really struggled with the spirometry test.

Hello I was born with Ehlers-Danlos type 3 and I had several knee dislocations early on it life and signs of EDS. Fast forward to 1984 when I got the Epstein Barr Virus which resulted in Glandular Fever. I never recovered from it and the main symptom was extreme fatigue. lethargy and brain fog. Eight years after this I saw information about ME/CFS and it seemed to appear at that time that this was what was wrong with me. I got a diagnosis by a professor of neurology. I believe now that it was in fact autonomic dysfunction possibly triggered by the EBV and surgery. My symptoms waxed and waned over the years and around 1996-2004, I was really improving. I had changed my diet in 1993 and lost heaps of weight and I hardly ate any wheat and went vegan and over the years I improved. But in 2004 I started to eat sugars and wheat again and then my health started to decline. By 2007 I was really ill and was in A&E 7 times and admitted twice with severe neuropathy and as I know it now POTS. My BP was extremely low and HR high. I couldn't walk and was very unwell. They didn't diagnose me then and I didn't get a diagnosis of EDS until 2013 and POTS 2015. I have continued to have the whole body neuropathic pain and POTS. I may have Mast Cell Activation as I have many problems with allergies, food intolerances and IBS. I have now modified my diet (I follow Yasmina Ykelenstam's low histamine, low inflammatory diet and it has really helped me) and do recumbent bike and floor exercises. My cardiologist wants me to work harder at it but my joints suffer and heart/BP go berserk (Yasmina says no to heavy workouts as it triggers histamine in the body which causes inflammation)! With the nerve pain I am supposed to do low impact exercises and with the EDS I am supposed to do resistance work but not stretch the ligaments and tendons. So exercise can be an issue. I drink 3.5l of water per day. I have the head of my bed raised. I do meditation. I have always been sensitive, but have put it down to my health condition as it has worsened since I got EBV. If your nervous system is affected then you will be hypersensitve and stressy. I just see a cardio now every 3 months. I am on 2.5mgs of Ivabradine per day for POTS. I cannot tolerate a higher dose. Beta blockers made me feel very unwell with more flushing and may have made the mast cell issue worse. My worst symptoms now are severe burning nerve pain (caused by blood pooling), tachycardia and missed beats, brain fog, dreadful memory, eye problems, headaches, IBS, gastropareris, nausea, weakness, breathlessness, muscle and joint pains and many more symptoms. Over the years the diagnosis of ME didn't help as most doctors didn't believe it. Many thought I had anxiety as I had tachycardia. I hope this may help you as I know how awful this is! All the best.

Hi. I was on Propranolol for a year or so and it made my POTS and MCAS/MCAD worse. My BP went higher and I started to flush up more. I started on a low dose of Ivabradine just 2.5mgs per day in the evening for me after I have eaten, but some take it in the morning and evening. My HR has come down slightly and I feel less dizzy. I have tried three times to increase the dose and it upsets my gut too much. I will stay at 2.5mgs. I have read of many people doing well on it, so don't let my story say otherwise. It is supposed to have less side effects than many POTS meds and I know if I could tolerate it more, I would be doing better. I didn't get the white light thing that some people experience with their vision, which abates after a while. Good luck with it.

I get splinter haemorrhages and I have done for years, but mainly ridged nails and splits. I have vertical ridges on my finger and toe nails. The nails are thinner and more brittle. Splinter haemorrhages came on in 1984 after Glandular Fever (EBV) and you can get them when your health is taking a nosedive, heart conditions, bad circulation etc and if you smoke.

Yes, if you have hidden or poorly understood conditions then doctors think horses not zebras. "When you hear the sound of hooves, think horses, not zebras." ... Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions. ...

You're the first person who has similar issues. I was beginning to think that it was just me. Rotten thing to put up with. I think my large bowel is the epicentre of my problems as head and neuropathic pain all get worse with bowel issues.

Nothing surprises me with specialists. Several neurologists I have seen have been useless with the conditions that I have presented over the years. They will not follow-up with any tests even when I say I will pay privately for them. Gastroenterologists, neurologists, cardiologists, gynaecologists, rheumatologists and respiratory doctors etc have all misdiagnosed me with many conditions and many were very obvious. Some have denied that I have certain things and then admitted later that I have them. I found out after accessing my medical notes that I had endometriosis, only no one bothered to tell me! They can get it very wrong and that is why we have to push for tests etc or we are left suffering.

I had a sleep study done as I was stopping breathing and then gasping for breath. The study found nothing of note. I was snoring so heavily and as I have had polyps in the past, in my nasal passages, I decided to get a nasal rinse. It was the best thing I ever did as after using it twice daily for a few weeks and then once or twice a week, the snoring stopped and I could breathe much better. I use it now and again if I get a bit bunged up or if I have a cold.

I have been labelled anxious in my notes for years as I had a fast pulse rate and I didn't know. With autonomic dysfunction you will get anxiety as part of the pattern. If you think about it, if your nervous system is damaged, malfunctioning or inflamed then you will show the signs of being hyper anxious. To say that your condition is anxiety when you obviously have the signs of POTS, then aren't a very good POTS doctor and do not follow the correct criteria for diagnosis.

Yes, so was the one who looked at my results, but he wasn't as expert/confident enough to give a diagnosis, as the last one. The final doctor I saw was much younger and more au fait with the whole condition and has written papers about it. It made all the difference. Good luck and I hope you get the diagnosis sorted out!

Yes, good idea. I did actually get to see the cardio who oversees TTT results and we chatted and he wasn't aware that I had autonomic dysfunction and I think if he had been made aware it may have changed his interpretation of the results. I went onto see a much more clued-up, younger doctor who is more skilled in this field. I think many tests, for various conditions, are often played down as doctors aren't confident or savvy about understanding or giving definitive diagnoses. Looking at test results in isolation fails to take in the patient's medical history which is often vital if there is to be an accurate diagnosis. I think doctors forget that patients suffering will continue without appropriate treatment.

Hi sb4 Sorry to hear that you are having problems getting a diagnosis of POTS. I have had two tilt table tests and the first one I was on Propranolol and Ivabradine the second and both times they were conclusive for POTS. Both times the physiologists/doctors who carried out the tests stated POTS, but the Cardiologist who interpreted the results questioned the result and would NOT commit to diagnosing POTS. Luckily I questioned the first TTT result and wrote to the Cardio I was seeing at the time and she suggested that I saw another Cardiologist/Electrophysiologist who is very interested in POTS and he had no issues diagnosing POTS based on my symptoms and both TTT results. I would suggest that the results are looked at again and ask for a second opinion based on these results and your symptoms. Good luck!

Hi Katybug Thanks for your reply. From your symptoms, it sounds like other people I know who get migraines and nausea and diarrhoea are part of it. I am guessing that is what you are referring to in your case. Mine isn't like that, in respect that the head pain comes on with my bowel filling up in lower section. I don't get much bowel pain only twinges and the last section of my lumbar spine sometimes gets very sore, but the head pain comes on and gets worse and then I do a bowel movement and the gut goes into spasm, then after 2+ hours the nervy pain in bowel and head generally subsides. Well, that's how it has been until more recently. I have had IBS since 1984 and I always had bowel spasm and constipation, from gastroparesis and adhesions (I rarely get diarrhoea). Since the POTS symptoms came on I have had nausea every single day from the time I get up until mid-pm and that's been for 10 years. The worsening headache issue came on after chiropractic work on my neck in 2013 and I wondered if that was linked. Then I was getting a headache when I had wind or a stool in my lower bowel, but it was fleeting. Going to the loo mainly eased it, although the gut spasm did affect my head. Now I seem to have head-gut pain everyday if I have hard or soft stools or gas. I have removed all gas producing foods and foods I am intolerant to, so I wonder if it is EDS, POTS, IBS or MCAD was behind it all? I am trying to figure out what is going on. My sister is exactly the same and she has some signs of autonomic dysfunction, IBS and intolerances, too. No one else shows the signs of EDS like me or POTS, but IBS is in 3 generations of the family and other similar issues show. I do take a probiotic, but it hasn't helped. It is very strange. I will try a migraine medication. The worst head pain didn't budge when I took an anti-inflammatories, extra Nortriptyline and Gabapentin etc, as they were listed on several websites as being the best thing to take. I was already taking the meds as I am on them all the time for neuropathic pain (that I have all over my body) and they didn't stop the 3 day migraine from coming on. Once my bowel was settled again the head pain diminished although my head was very sore for days.

I've just had another check and most symptoms are supposed to be around the epigastrium, where my problem is with the large bowel/descending colon.

Hi SarahA33 Thanks for your reply and link. I have read through it and I'm not sure that it fits with me as I don't have abdominal pain and vomiting etc. It's the nerve pain and pressure in my head that figure with me. I have made a note of it though to check it out more. I don't see any consultant except my cardiologist and although he's really into many aspects of POTS, he isn't clued up about the various causes. I shall read up some more to see if that could be the answer. Many thanks!

Hi Does anyone else get headaches or migraines related to (nerve pressure?) their large bowel? I have EDS and also IBS and gastroparesis. If I have bowel gas or a stool in the lower bowel I get severe headaches and migraines (nausea, poor vision, delirium). They affect the whole of my head and I get pulsing pain around my eyes, usually the left one and around my temples. I also get lots of sharp shooting pains. They started to come on in 2013, after seeing a chiropractor, and this last two months have gotten increasingly worse. Even if a small amount of soft stool is in my lower bowel, then I get excruciating headaches. When I have passed anything, I get pain for another two hours or more. The only thing I can do is lie down and wait for it to subside or sleep if I can. I have tried anti-spasmodics and anti-inflammatories. I am already taking Gabapentin (Neurontin) and Nortriptyline and even if I up my doses nothing touches it. I have removed as many gas-creating foods as is possible from my diet and I take a probiotic. I'm not sure what else to do. Any ideas welcome. Also around the time the headaches came on the pressure in my eyes indicated Glaucoma. Is there a connection? I have had my intracranial pressure checked and it's fine. My headaches are more crown, temple and eye area. My sinuses are fine.

Yep! That sounds familiar!

Yes, I'm worse in the cold and in extreme heat. Much better when weather is mild. I'm not sure what is best to do either, but find if I move about more, then my limbs freeze less.

Yes, some people may POTS and no other conditions, as I once discounted anything but my initial (incorrect) diagnosis of ME/CFS. In recent times I have been diagnosed with EDS and POTS and who would have thunk it! It came as a complete shock, but now everything is falling into place and I am understanding so much more.

Hi. I agree with Katybug about the hormonal changes every month. I still have them and I had a hysterectomy years ago. I certainly dip every few weeks and then have several really rough days.

I started sensitivities, allergies and I tolerances after glandular fever. I also developed IBS at the same time. My list of drugs I couldn't take has lengthened over the years. Everything got gradually worse as POTS symptoms worsened, as did neuropathic pain, flushing etc. Everything reached a point where I was desperate for help after the cardiologist gave me Propranolol and I felt truly dreadful. I think that triggered something and now I'm pretty sure it's mast cell activation, as all foods high in histamine gave me the worst reactions. I checked all my symptoms against Yasmina Ykelenstam's and I pretty much had all of them. I eliminated high histamine foods, but not all as some are healing, nutritious and anti-inflammatory. I can now eat stuff that was off the menu and I'm waiting to see how much it helps in the longer term. I wouldn't discount any other conditions as I have had many diagnoses over the years and most are ones that I would have discounted ten years ago.