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Everything posted by E246

  1. Thanks Pistol, I am taking a third course of antibiotics (Rifaximin for the first time) and hope this works. Looking back I think a lot of my POTs symptoms are related to SIBO as well. As this got better so did the POTs. I just had a relapse after flu. As I understand it SIBO (small intestinal bacterial overgrowth) creates lots of toxins in the body and I think may have played a big part in my POTs symptoms. Just wondering if anyone else thinks along the same lines or had similar problems. Thank
  2. Hi, I haven't been on the site for ages but it was once a life-line. As I have got better from POTs I have got worse from SIBO. I have had two courses of antibiotics but in England you can't get Rifaximin which is the best I understand. Can anyone help me with up to date information as SIBO is debilitating me. I have bloating, pain, burping, and it sets off POTs episodes. After the first course of antibiotics where I took 2 different types at once and then followed a Fodmap diet I eventually became really well. But it has returned. My original breath tests showed an extreme reaction to gluten and fruit but ok with diary. The last in-depth post seems to have been a lot of years ago and so hoping there is more information in the community. Thank you.
  3. Hi, Yes my pots started after having a mirena coil. The coil was removed after 3 days but I ended up not being able to walk and not understanding why my legs wobbled. For 5 years i had posts symptoms on and off and nobody understood until it hit me full on. I still believe the coil started my POTS. Having said that i also took bio-identical HRT and i found this helpful.
  4. Hi, I took Trimethoprim which is standard for UTI but not for much else apart from skin conditions. It may be I had a low grade UTI infection for a while and this was making me feel unwell. Made a mistake - it is of course a white blood cell count that was low. I saw my GP today and as I feel better she will repeat the blood test and see if the antibiotics have made a difference. Thank you TCP - I have often suspected i have a mast cell problem but my original doctors were not too interested. I have now moved nearer London and am seeing a POTs specialist who used to work at the Mayo Clinic and I think she is great. Definitely feeling more hopeful that I might get the right medication or advise. It was just so pronounced - the change in how I felt - there has to be something in this.
  5. Hi, I have had an ongoing low red blood cell count (neutrophil count) since contracting shingles 18 months ago. it has been suggested that I was post viral or was fighting some other infection. I have been chronically tired since having shingles but i was lucky that tiredness had not been a big problem generally with my pots. Then 6 weeks ago I developed burning when passing water. After a week on antibiotics the debilitating tiredness and general feeling of lowness that has dogged me since shingles just lifted. I was able to work, walk and felt good in myself. My energy returned and although I still have pots I did not have any episodes of feeling really ill with it. This has been sustained until last week when I again notice UTI symptoms again and started to feel tired. I just wondered if anyone else had experienced dramatic improvement after taking antibiotics. I didn't take any medication for shingles - I was too afraid because of over reaction to even the simplest drugs and this is probably the first time I have need them during the five and a half years I have had pots.
  6. Hi, I was prescribed Ivadradine in Newcastle by the Pots Dr Julia Newton. It didn't work for me but i didn't have any bad reaction either.
  7. Hi, Everyone seems quite knowledgeable about EDS and echo exams here. Do you mind if i ask a question? Can anyone tell me if EDS 3 means you are prone to heart problems. I had an echo 5 years ago and have EDS 3 and the doctor has suggested i get another done soon - but like you I am still waiting. Thank you
  8. Hi, There was a program on radio 2 with vanessa Phelps and a doctor talking about pots with woman who had really debilitating symptoms and was in a wheelchair. She said that if she swam or flew she could then stand for a day or two afterwards. She did one or the other before her wedding so that she could stand for the day. Maybe the flying had a positive effect on you. I remember the woman saying this really clearly as flying has the opposite effect on me and i will never fly again as a result.
  9. Hi, Yes i bloat terribly on some days - you're lucky if you only look 5lbs heavier - i look 6 months pregnant. I haven't had this problem for sometime but it has returned with pain and a lot of burping. Have you found anything that helps?
  10. Thank you for your replies, i have found them very reassuring. I thought i was over Pots after 5 years and never had to think about having a flare. Then just before christmas my stomach started to hurt and swell and i felt nauseous. So i had a colonoscopy and the meds for that caused 10 hours of surges and i couldn't take the second prep. The only time i felt good over all of Christmas was while i was under the conscious sedation which obviously settled my nervous system down. The stomach swelling then changed into chest pressure, pain and breathlessness with regular evening declines and it gradually dawned on me that i was back into full blown pots. I had been on Verapamil but when i feel well i do stop taking it and I think this is what had happened. However i have gone back onto it and it doesn't seem to be working as it did before. I too usually find a combination of this and valium (diazepam) really keeps things in check but i just can't get the symptoms under control. Yesterday it was chest pressure and pain and today my stomach has swollen and i feel sick. I start to worry there is something more wrong with me than Pots as it is just so painful and as doctors do not know quite what to do i just feel i get left to suffer. The surges are very difficult and put me into a hyper vigilant state. My body feels wracked with pain. Sorry this isn't very cheerful but i feel so tearful and i rarely cry. Just thought it was all in the past. I have just moved 350 miles to a new house 7 weeks ago so will now access a new set of doctors and i am hoping this may help through light on my symptoms and so effective medication. But i fell down the steps 3 days after i moved in and fractured my ankle in 3 places so this hasn't helped as it happened two weeks after my pots had kicked off again. I don't have migraine and i don't think it's muscular as the pain and pressure is in sync with raised BP and HR.I do get chest pain if i stand still but can now walk reasonable distances. Has anyone had an angiogram? Not that i want one. I haven't had an exercise test either. And how often should these tests be done?
  11. I have always suffered a lot with chest pain and have always felt nervous that maybe this isn't pots but a cardio problem. Like other people who have chest as a main symptom of Pots I never know whether this time i am going to have a heart attack. I experience extreme pressure in my chest, raised heart rate and adrenaline fuelled anxiety or super vigilance as i wait for the symptoms to go off. I have been much better until just before christmas and have had a real relapse. I woke up the other morning and whilst still lying down i got terrific pain and spasm that started in my back then wrapped around into my chest. As this isn't about posture is it still Pots??? I have a whole range of different chest pains including pain down to into my arm, intense pressure, sharp pains. When this happens I also feel very unwell and once it starts it commonly goes on all day or at least i feel ill all day. Today i feel very down, it definitely affects my mood which is generally optimistic. I had an echo 5 years ago and the ejection was only 55%, then i had a CAT but without contrast which showed no calcium build up. Then i had am mri which not much was said about. The conclusion is mico vascular angina but not sure this quite fits with the pattern of a few days a week being too ill to leave the house or do much then other days where i can go for a walk or swim with no symptoms. I have just moved house so will no longer see the doctor i normally see and looking for some reassurance from anyone else with similar symptoms. Thank you.
  12. Hi, I run a company and have managed to grow this over the six years from when I was first diagnosed with Pots. I have found so long as I don't do too much outside of work i could work quite hard. But i often cannot take stressful phone calls or deal with some conflict - this will make my heart race. Even on a good day this will increase my HR and that can sometimes make me feel aggressive - I suppose that is the adrenaline. It is important to have people around you that understand that the symptoms are erratic - sometimes without warning I know I am too ill to keep an appointment with a client. But I have carved out what I can and can't do and this expands and contracts with my health. I was initially told to stop working but I am so glad I didn't, i would have become just my illness, instead i used the time to grow my business which has given me a lot of pleasure. Stress makes pots worse but it isn't the cause in my opinion. Sounds like you are in a great position, maybe reduce the non essentials and then you can keep on track with the bigger picture. Hope this helps. All the best.
  13. Thanks Andy, I did see Mathias through the NHS just before he retired and through that department was also diagnosed with EDS 3. I have a lot of chest pain so not sure if a cardio/pots doctor is better. Was just wondering what the options are. Did he diagnose the Mast Cell?
  14. Thanks Katy, Yes I think Dr Purcell should be on the list - he was clearly dealing with other dysautonomic patients and gave me a lot of help but also reassurance. I will email him and check he is happy for that to happen. Yes I was hoping this email might put me in touch with someone local. I have been quite well for a few years and then had an awful flare as we moved house. Thanks
  15. Have been seeing a really helpful cardiologist privately in Newcastle - Dr Ian Purcell. He has helped me so much even though his speciality is cardiology. It worked for me as so many of my symptoms have been to do with chest pain. He listened and worked with me. So now I've moved 350 miles to Sussex and not sure if anyone on this site has either a good GP around here or what Pots doctors are available, either privately or NHS. Really appreciate any help. Thanks
  16. Thanks, They said all the tests in A&E were ok and an ecg showed ectopics - is that PACs. It doesn't make much sense to me but it's continuous and just started all of a sudden.
  17. Hi, I have always had lots of chest pain and different types of heart rates fast and slow. Then a week ago i started getting almost continuous ectopic beats that feel like missed beats and make me lose my breath. They feel uncomfortable particularly when they happen repeatedly and whether because of these beats or separately i have also been feeling very unwell. I went to the docs who sent me to hospital so i know it is ectopic beats. Of course they were completely unsympathetic and i found nothing out. They get better and worse but have not gone away for a week. Can anyone throw any light on this or have similar problems. Thanks
  18. Have you asked your for a second opinion to somewhere that has experience with POTs like London. You have a right to a second opinion and somewhere that understands pots and can give you the correct diagnosis may help. i think you are also allowed to add information to your own medical notes. i had some similar experiences - nowhere nearly as bad - but i couldn't get a correct diagnosis because of the preponderance of doctors to claim what they don't know as psychological. i got a second opinion and then I saw someone privately in the end. Good luck - yo don't deserve to be treated like this.
  19. I don't test my own sugar as i am not sure what i am looking for. I have had fasting tests at the doctors and they always say i am okay but if i go without food for too long , its not that i feel hungry, i just feel really weak and ill to the point where i dont even feel i can walk. And my heart rate drops into 50's. But no-one seems ot understand or think there is anything wrong? Also appreciate any insight.
  20. Hi, Yes when i am not too well and especially when i have chest pain i burp a lot and it feels like a real release of pressure. i was aware of this before i even had a diagnosis and my husband always says when he hears me burp that i am starting to feel better - it always comes at the end of a bad bout. And it is loud and explosive. But it is definitely part of the pots.
  21. Hi I am from UK. haven't posted for awhile as doing a lot better. I was also first case of POTs at my doctors in Newcastle. I asked for a referral on NHS to Prof Mathais and had a week as an inpatient. Also had a referral for assessment for EDS3 which was positive. I now see a private Cardio in Newcastle called Dr Purcell who deals with chest pain and is treating me for microvascular angina which seems to overlap with the pots. This site has been invaluable but also good to here from others in uk.
  22. Yes, The diagnosis has come from two doctors separately and is often made by exclusion of other possibilities. I had a heart mri of the micro vessels which showed no damage but the private doctor i see and trust specialises in chest pain and believes this is what i have. I also have a fib which seems to trigger the post. And because the cadrio is not a post specialist so am not sure what is pots and what's MVA. For a long time i was told it was just pots but it did not answer all the questions like the surges that left me with chest pain for 12 hours at a time and were debilitating. And this is similar to people with MVA Not sure i have quite got to the bottom of it but at least have meds that have made a big improvement - some of it maybe due to retaking HRT - so no good for your son. Keep me posted.
  23. Yes had spelling wrong - it is a beta blocker.
  24. Hi Gemma, I often had very low HR and didn't feel great when it happened. Often it fell to low 40's. It all seems part of the difficulty i was having with chest pain and irregular beat. This seems to have got better with new meds. It worried me at the time but just used to get up and do something to get it going again.
  25. I seem to get short of breath more easily when i exercise since i have been on verapamil. Is this a side effect? I have tried to find something about this online but not much info. I keep forgetting to ask the doctor. Thanks
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