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Everything posted by flop

  1. In the past I would have easily met the criteria for POTS as we have plenty of 24hr ECGs showing my heart rate at 120-140 during the day when I was sending relatively still (eg waiting at the train station). Back then I didn't feel particularly ill - maybe a little breathless and fatigued but nothing that made me see a doctor about it. In 2004 a viral illness turned what was probably compensated POTS into a full blown disabling illness with me feeling dreadful every moment I was upright and fainting many times per day. The underlying cause of my POTS is Ehlers-Danlos Syndrome. My younger sis
  2. My understanding is that when we get chest pain that seems to be cardiac (ie feels like a heart attack would feel) it is caused by too little blood flow getting down our coronary arteries. Unlike ischaemic heart disease it isn't caused by narrowings / blockages in the coronary arteries but by problems with blood flow in the area. It is interesting to note that the coronary arteries receive their blood directly from the aorta but that blood flows down the coronary arteries during diastole (the gap between heart beats). When you have a fast tachycardia diastole gets shorter (ie there is less ti
  3. My tachycardia is Sinus Tachycardia too (by definition POTS is a sinus tachycardia as it is the autonomic control of the heart rate tat has gone haywire not the actual electrical system of the heart. Though of course many people have both POTS and SVT just to make things more interesting!). Well controlled (ie a good day and on medications) Lying - 60s Sitting - 70s Standing - 80-110 Climbing stairs - 100-130 Bad times Lying - 60s Sitting - 80-100 Standing - 120-180 Climbing stairs > 220 The fastest my sinus tachycardia was ever recorded was 238/min during a cardiac exercise tolerance test
  4. Tests I've had: GP (general practitioner / family medicine) - ECG (= UK name for EKG), showed tachycardia. Cardiologist - ECG (tachycardia) - Chest X-ray (normal) - Echo (mild MR and TR, nothing significant) - 24 hr Holter monitor (episodes of tachycardia) - Cardiac memo (no recordings as I fainted and couldn't hold the device to my chest) - External loop recorder (no syncope during the 6 weeks I wore the recorder) - Tilt Table Test (TTT, continuous ECG, BP every 3 minutes) (heart rate 169, BP 96/90, diagnosed with POTS) Electrophysiology Cardiologist (I was referred to EP because of a family
  5. Fading out of sounds / hearing is a classic pre-syncope warning symptom. For me my vision and hearing often fade at the same time but they can happen separately. It is all related to the brain not getting enough blood flow / oxygen and so some brain functions start to switch off. Probably a good thing your daughter was lying down when this happened. Flop
  6. Hi Jen, It sounds like you are having a really tough time at the moment. When I first developed severe problems with my POTS back in 2004/5 I was also fainting a lot, up to 10 times per day. Whilst I can understand that your doctors are frightened that you will hurt yourself and have advised bed-rest to prevent injury I believe that bed rest will lead to deconditioning and ultimately make your symptoms worse. When I was first diagnosed my cardiologist told me that I was never to lie in bed all day and that no matter how ill I felt (even with flu) I was to sit in a chair with my legs down. He
  7. Lieze, I'm assuming you live in a home without stairs at the moment? Have you considered trying to get your body accustomed to climbing stairs? I used to have dreadful problems with heart rates over 200 climbing the stairs at work. I gradually made my body cope by climbing very slowly, one step at a time. My tendency was to get to the top quickly and then sit down. I started just going up 3-4 steps then back down and gradually increased the number of stairs until I could manage 13 at once (most UK houses have 13 stairs per floor). I used to rent an apartment but now own a small house. I was r
  8. I usually add a tiny pinch of Himalayan salt to each glass of water (not enough to taste salty, just enough to make the water feel soft in your mouth). When I know I'm at risk of dehydration (hot weather without a/c, upset stomach etc) I drink dioralyte sachets in plain water. I avoid dioralyte relief though because it has cooked rice powder in it and messes up my stomach. Flop
  9. Drinking water in large volumes isn't that helpful for us. It is better to be constantly sipping fluids rather than having a lot at once. When you drink large volumes at once your body sends signals to the kidneys saying "oh dear, here comes a load of fluid, just get rid if it would you?" You do need to take extra sodium with the fluids or your kidneys will just flush the fluids back out again. The sodium gets filtered out of the blood by the kidneys but the kidneys also have a mechanism to reabsorb the sodium and keep it in the blood. Due to osmosis water will follow the sodium back into the
  10. I had skin prick allergy testing done a couple of years ago. I have stupidly severe hayfever and reactions to house dust mite. I had to stop taking antihistamines and other allergy meds for 4 days before the testing. My test wasn't at all painful, they put a drop of liquid on the skin then used a plastic tool that the nurse put into the drop and rotated so it broke through the top layer of the skin. After about an hour I went back in to have the results "read" I had several large angry welts on my arm that were very itchy. I was then given antihistamines, a one-off dose of prednisolone and so
  11. Hi, I have previously had the horrid tachycardia symptoms after regular dental anaesthetics and I didn't go numb.. I have even had molars filled without any anaesthetic at all (not something I'd recommend!!). Last year my family found a new dentist who has been fantastic with me. He uses local anaesthetic on a cotton bud to numb the gum before doing the injections. He uses bupivacaine with epinephrine - I was worried about the epi but he explained that it is there to make the blood vessels contract so that the local anaesthetic stays in the area it is supposed to and isn't cleared away by the
  12. Sara is correct. The bundle-branches are special electrical conducting pathways in the ventricles. They take the electrical charge from the AV node and very quickly it travels down to the bottom of the ventricles via the bundle branches, the charge then spreads out through the heart muscle causing the venticles to contract from the bottom upwards. When one of the bundle branches is damaged by a heart attack, it causes a change in the ECG (EKG). The QRS complex is the tall spiky bit on the ECG and it is normally very narrow. A bundle branch block makes the QRS complex wider as the electrical c
  13. I take ranitidine (generic Zantac) specifically to help with allergic reactions. My GP thought I was crazy when I said it helped with allergies as it is supposed to be used for reflux and heartburn. I showed the doctor some of the MCAD literature and pointed out that H2 blocker stands for histamine-2 blocker. I certainly get more allergy symptoms when not taking Zantac. Flop
  14. Duodenal biopsy to test for coeliac disease will only show positive if you have been eating gluten regularly for several months before the biopsy. This is because in coeliac disease (not gluten intolerance) the presence of gluten actually damages the wall of the duodenum and it is that damage that is seen under the microscope. If someone with coeliac disease follows a strict gluten free diet and then gas the biopsy they will get a false-negative result. Flop
  15. My POTS is secondary to Ehlers-Danlos Syndrome. When I was diagnose with EDS Prof Grahame asked about my family and thought that my paternal grandmother, father and sister also have EDS. The only person to have POTS type symptoms other than myself is my sister. She doesn't get the consistent 30 beat rise in heart rate but does get an increase in hr and is gradually experiencing symptoms like fatigue, exercise intolerance and heat intolerance. I hope for her sake that she doesn't develop full blown POTS. Flop
  16. I was started on Paroxetine 20mg (Paxil) in 2006 for POTS. Last year one of my doctors decided that I should go onto Duloxetine (Cymbalta) instead. Having once accidentally missed my paroxetine for a whole week (pharmacy error) I was terrified of feeling as ill as that again. My GP tried to put me on 10mg/day for a week then 10mg alternate days for a week but this was way too fast. In the end we mixed low doses of both meds (only with doctors advice!!). One of my friends has weaned off paroxetine twice (before each of her pregnancies) and advised me to make tiny reductions in the dose each w
  17. I've put 6-10 years. My POTS became suddenly disabling in 2004 following a viral infection. But knowing now that I have Ehlers-Danlos Syndrome, and looking retrospectively, I had had milder symptoms for many years. I hadn't previously realised that my fast heart rates of 130ish and feeling generally unwell a lot of the time were related to me being stood up all day. I hadn't bothered to check my pulse when I felt well (when lying down or sitting) only when I felt ill. Perhaps if I had realised it was a postural issue earlier I might have got treatment sooner, who knows?? Flop PS - a few posts
  18. Hi, I think this is a question for your doctor. Sudden weight gain like that is often due to fluid building up, and given your recent CT scan and swollen belly, fluid in the abdomen might be the cause. Can you get in to see your regular doctor in the next day or so? If not then going to urgent care or the ER would be sensible so that they can start to figure out what the problem is. I hope you get some medical answers and can start to feel a bit better soon. Flop
  19. Sounds fab, if anyone has a way of recording it so I can watch it in the UK please let me know. Flop
  20. Hi Jonathan, I'm in the UK and am on Octreotide. I had tried all the usual medications (water, salt, compression, fludrocortisone, beta-blockers, SSRI, midodrine, then Ivabradine (not a "usual POTS med")). I got referred to a specialist centre in the UK but they were very slow to actually give me anything to treat my POTS and syncope. Eventually I was put on a tiny dose of Octreotide in May this year (25 micrograms sub/cut twice daily). I found the injections to be immediately helpful. I take them on top of a whold host of other medications. When I started the injections I was under close moni
  21. Hugs Caterpilly, it is tough to have one major illness but add cancer and chemo and there is no wonder that your body is begging for a rest. Can you list the medications you have tried (and what effect or side-effects they had) as there may well be treatments you haven't yet tried. Finding the right meds is tricky and involves trial and error to end up with a combination that works for you. Flop
  22. Hi Stace, I haven't had either implanon or mirena myself but I did do extensive research about them 18 months ago when I was considering having a mirena fitted. Firstly your doctor's advice that only women who have had children can have a copper IUD is (in the UK anyway) considered to be out of date. It is easier to fit an IUD in someone who has given birth naturally but it is perfectly possible to fit them in other women too. In fact in the UK the copper IUD is offered as a form of emergency contraception up to 5 days after unprotected intercourse even to girls in their early teens. Implanon
  23. Issie, I now understand your question. Unfortunately the doctors who do treat POTS etc all have their own ideas and don't use the same medications or treatment strategies. For example my local cardiologist in the UK read a paper that showed that one SSRI (Paxil = Paroxetine) was helpful for POTS and started me on Paroxetine. I was then seen at a UK specialist centre where the doctors say that all SSRIs are really bad for POTS and it may be causing my symptoms. Then I travelled to the USA and saw a specialist who said that SSRIs are helpful but that combination meds like Cymbalta may be even be
  24. Issie, have you seen the DINET documentary DVD "Changes"? This film includes most of the things that you listed in your post - 2 doctors who treat autonomic dysfunction - 2 patients explaining how their lives have changed - demonstration of the varied symptoms of POTS - discussion and lists of medication options. The documentary took a lot of effort from the team who made it and is perfect for showing to both family/friends and sending to your doctors. The main difference between running non-profit organisations for mainstream illnesses (such as diabetes, cancer, MS) and running one for rare
  25. Hi, clonidine can lower your BP as well as lower your heart rate so cutting back might actually increase your BP. Do you have an understanding PCP that you can call to discuss the recent changes and advise you on altering your meds? Flop
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