Emily22

Thanks for replying. She’s always dizzy and faint, drinks lots of water and takes prescribed salt tablets plus a beta blocker. Eats well but has nausea every day.

My daughter has daily abdominal and chest pain, nausea and some new episodes of very low bp (80 over 50). MRI and ultrasound scan were negative for gallstones but she still has raised liver levels. Also cystitis and green/ yellow in stools. Gastroenterologist suggesting a virus or gallstones. Is there a link between PoTs and gallstones? Has anyone had similar symptoms? Also at what level low bp should PoTs patients go to hospital? Thanks

Showers used to make my daughter feel very faint. Now she uses a shower stool, grab rails and showers her legs with cold water before getting out of the shower. Only lukewarm water too. Makes such a difference.

Thanks. Have asked for the tests and having some done next week.

Anyone had adrenal testing? Does it affect the treatment for POTs? My daughter is getting an exceptionally high pulse rate at times and I’m wondering if she could be getting adrenal surges.

Vagal manoeuvres eg Valsalva technique etc can really help. Also ice on back of the neck, drinking iced water, splashing cold water on face.

Hi, also in the UK. My daughter has POTS. We saw many many hopeless doctors before eventually getting a diagnosis. There’s very little in the way of support or even doctors who will see kids.

My daughter had a modified tilt test- much easier than the full test and the cardiologist said it was just as useful. No nausea either.

We’ve seen so many supposed specialists ( paediatricians, 3 cardiologists, rheumatologists, several gastroenterologists) but still trying to get some help for my daughter. She has very bad daily stomach pain, with chronic nausea., slow bowel motility and gastric reflux. We finally found a good cardiologist, who diagnosed POTs and a provisional diagnosis of Supraventricular Tachycardia. Is it worth seeing a neurologist? What tests can they do?

Yes she’s had an endoscopy. Thinking she needs gastric emptying study. Hey Dizzy - my daughter just seems to get more conditions. Which ones are you juggling? Do you have much experience with the gastric side of things? We’ve seen 3 gastros, 3 cardios, 3 rheumos. Have now found a decent cardiologist but not making much progress with the rest of the puzzle. Wondering if we should see a neurologist next.

Hi GardenGal, She’s ok but it’s very stressful now that we have to rush to hospital when she gets an episode. What has your experience of SVTs been? Do you take beta blockers?My daughter has just started on Metoprolol.

Hi everyone, just got used to the POTS and now my daughter has been diagnosed with what the cardiologist thinks is SVTs. Her pulse rate goes over 200. I am confused now as to which palpitations are from POTs and which from SVT. Scarily we have to go into hospital if it happens for longer than 20 minutes now. Does anyone get a pulse rate this high from POTS? Stomach pain is bad too. Now trying the low histamine diet but not helping so far.

My teenage daughter has now been diagnosed with SVT as well as POTS. Her heart rate goes terribly fast - over 200 bpm. Am feeling confused and could do with hearing from anyone who has experience of these conditions. Thanks

That was a quick reply Kim. I am so grateful for yours and everyone's support. I feel like I am in a crazy situation. It was bad enough when the doctors thought the CFS was all in our heads but I never expected the gastro doc to challenge both the POTs diagnosis and the reflux. Im not putting my daughter through an endoscopy just to prove to the doctor that she has reflux. He also said that a diagnosis of POTs was subjective,just a variation on normal and any link with stomach problems was unproven. My daughters heart beat goes from 100 to over 130 when she stands up! Hardly normal. She has low ferritin and low vitamin D. That's a good idea about the B12. I will see if they checked that. She's had a lot of blood tests which were all ok. The parathyroid was a little high though. Its fascinating how long food can stay around undigested. An X ray showed my daughter has moderate loading. Movicol helps a little. Unfortunately she can't have Donpridone because of family history of heart problems. I do think she has gastroparesis too.

Hi Morrolan and Kimin. It's so good to hear your stories. Thank you Kim for your kind words. We tried yoga but it made my daughter's gastric reflux so bad. She can't bend without getting reflux pain or lay flat. I am going to take her for some very gentle swimming this weekend and see if she can manage. She's not keen though because whenever she's tried to exercise she's had palpitations but I'm hoping the new meds will help. Dizzy and Kimin - We had an difficult appointment with the gastro doc where he didn't appear to accept POTS and/or any link to stomach problems. This was despite him having the diagnosis from the cardiologist in front of him! I asked about gastroparesis and the gastric empying study but he just wants to do an endoscopy to check for acid to prove my daughter has gastric reflux. She has had reflux for years. We have now seen three gastroenterologists and are no further on. The first two just thought it was IBS or all in her head. She has had an endoscopy before because she had a very high Calprotectin test. We have tried PPIs, hypnotherapy and anti spasmodics. Wondering where to go next.....

Hi, my daughter has been taking Ivabradine for nearly a week now. We've not noticed any improvement yet. How long does it normally take. The cardiologist just said to exercise but how with so many symptoms? I would love to hear from parents of other young people who are taking this med. Thanks

Dizzy - I love your daughter's comment about her spoons being in the dishwasher! It's brilliant. She sounds funny and bright. It's amazing how much our kids put up with and still retain their sense of humour. We saw the physical therapist today, who also went on about exercise and walking each day. So my daughter did the squat exercise and got sick and dizzy. Everyone we see goes on and on about exercise and it's upsetting when you can't actually do it. This is why the cardiologist has put her on Ivabradine - so she can exercise. It certainly will have to be the tiniest steps - quite literally. It's all she can do to get into school part time each day. I wonder if we should have seen an improvement in her condition on the Ivabradine? Do you tend to see an improvement quite quickly if meds help your girls? What tests did your daughter have for the gastroparesis? We are seeing the gastro this week and I know he wants to do more tests. Eggs do seem to be easier digested than meat. I've been making everything non fatty for a long time and cook everything from scratch. The iberogast sounds good. I will try some. Sarah A33- Thanks for the welcome.

Thank you so much for replying. It means a lot to hear from other sufferers and carers. Dizzy- I'm sorry to hear how badly your girls are affected. I really hope their condition improves. Thanks for so much information. I will ask the gastro when we see him this week about the Reglan and Zofran. I aksed our GP about these previously but he wouldn't prescribe those anti sickness meds. and said nothing could be used long term. We find Movicol helps quite a bit with motility but nothing seems to stop the pain. Sea bands take the edge of the nausea but she could do with something more effective. Have you found anything that helps with the abdominal pain or did that improve on the Reglan? Her CFS specialist says that he has seen many children get CFS and secondary POTS. However, that concerns me. If she still has CFS, then how on earth is she going to be able to exercise as the cardiologist wants her to? The cardio is adamant that exercise, together with Ivabradine is the key to improvement but exercise can be dangerous for people with CFS. She started the Ivabradine and physical therapy exercises but not seen any improvement so far. Have you found any foods more difficult to tolerate? Marcus - Thank you. Yes fat is very hard to digest. Neither of us can tolerate it. I don't fry anything and bake or steam. My daughter does like ginger although it doesn't seem to help with her nausea. Have you found any other foods troublesome?

Thank you. It's really kind of you to reply so quickly. The cardiologist suggested Ivabradine. We are waiting for him to check with about her other meds before he can ok the prescription. Our local rheumatologist said she's only slightly hypermobile but I am going to try to see a rheumatologist who has a special interest in EDS. I've been told she has Reynauld's type symptoms in her feet but the cardiologist said that this is part of the POTS with the blood pooling. Dizzy -Do your kids manage to exercise? Have you found anything that helps with the stomach issues and nausea? Our gastroenterologist is keen to do another endoscopy with a pill/ caspule camera but I don't see the point if it's all part of POTS. He seems to be still looking from Inflammatory bowel disease. There's so many symptoms and so many doctors have been involved. It does make it more than a bit confusing. I don't know now whether she has CFS or it was just the POTS all along.

Hi, my teenage daughter has just been diagnosed with POTS by a cardiologist. We have seen so many doctors over the years who didn't have a clue what was wrong with her. My daughter has palpitations, fast heart beat, constant nausea, exercise intolerance, gastric reflux, stomach pain, slow bowel motility, dizziness, near fainting episodes, purple/blue toes. and hypermobility. The cardiologist has suggested meds to slow her heartbeat and told her to exercise. We had a previous diagnosis of CFS and she has been unable to exercise for some time. She also has very painful heels but a scan has shown no inflammation and the doctors don't know why she has pain when she walks. Orthotic insoles haven't helped. An endoscopy showed no inflammation in the stomach but she has daily stomach pain. I would love to hear from other parents of kids with POTS. Also I am wondering whether we should see a neurologist. Any advice would be much appreciated.