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About flop

  • Birthday 10/02/1979

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  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 sister has never been properly evaluated herself but my rheumatologist diagnosed her and my Dad with EDS based on what I told him. My sister has recently stated to complain of vague tiredness and heat intolerance. I did a poor mans tilt test on her an it showed tachycardia 100 lying down and 124 standing so not quite enough for an official POTS diagnosis but close enough to suggest that she does have POTS. Now at the moment she functions perfectly well and can dash about like most people in their late 20s. I believe she has POTS but is not disabled by it at the moment (and I hope she doesn't ever have to go through the experiences I have over the past 7 years). You should make a list of the aspects of your condition that make work difficult and a list of suggested accommodations that would help you overcome your disability (eg less hours or flexible hours, a footstool to elevate your legs, access to cold fresh water, able to take frequent short breaks to walk about and get your circulation moving). Employers have a legal responsibility to make reasonable accommodations to enable you to work. Good luck, Flop
  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 time between heart beats). This means that there is less time for the blood to flow down the coronary arteries. This would fit alongside and compound the thoracic hypovolaemia research. If there is less blood and less time for blood flow then the poor coronary arteries will struggle to get all the blood they desire. Importantly POTS related chest pain should improve with rest and lying flat. Anyone getting new chest pain or different pain should always get checked out by a doctor but once you have been told it is POTS related and not ischaemic heart disease then you can treat the pain with rest and lying flat rather than having to visit the ER every time. Flop
  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 in 2003 (before I became ill with POTS) Flop
  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 history of HOCM and they were worried I might be having episodes of VT) - ECG (tachycardia) - Electrophysiology Study (no arrhythmias induced) - Implanted Loop Recorder (reveal device) (sinus tachycardia, sinus pauses) Neurologist at specialist Autonomic Unit - 24 hr BP monitor (episodes of tachycardia and hypotension) - full 1hr TTT (with beat-to-beat BP recording) (showed POTS) - autonomic function tests (valsalva, cold pressor response, hand grip) (no neuropathy) - TTT after fasting then repeated 1 hour after liquid meal (confirmed POTS but no change with meal) - Poor man's TTT (standing HR & BP for 15 mins) before and after exercise (cycle ergometer pedalled whilst lying flat) (confirmed POTS, POTS worse after exercise) - Thermal threshold nerve tests (normal) - Basic nerve conduction study (normal) Rheumatologist - diagnosed Ehlers-Danlos Syndrome by clinical examination, no testing done. Several years later a neurologist found clinical signs of peripheral neuropathy and balance problems. Neuro advised multiple blood tests, some were done but any not available in Wales. -B12 levels (confirmed B12 deficiency), treating with B12 injections has improved the neuropathy symptoms - I am still waiting for the MRI Brain & Spinal Cord, and Nerve Conduction Study that should have been requested last December. Other tests done by my Gastroenterologist (all but flexi sig done last week) (I have chronic diarrhoea and over last few months have developed nausea and vomiting) - flexible sigmoidoscopy (normal) - OGD (upper endoscopy) (showed stomach full of bile) - Oesophageal manometry (borderline normal but I was taking Alverine Citrate) - 24hr Oesophageal pH (108 episodes f acid reflux in 18 hours but less than 5% of total time so test normal I was taking Ranitidine) - Lactose-Hydrogen Breath Test (probably shows Lactose intolerance) - Glucose-Hydrogen Breath Test (negative but a specialist has told me test should have used lactulose not glucose and been tested for longer that 2 hours as I may have gastroparesis complicating matters) - B12 (within normal limits on monthly B12 injections) - Red cell folate (high, on folic acid supplements) - Full blood count (normal) - Faecal elastase (awaiting result) - Faecal pH (awaiting result) - Stool microscopy, culture and sensitivity (awaiting result) - Duodenal biopsies (awaiting result) - Duodenal aspirate for culture (awaiting result) - Transit time study (swallow capsules containing metal markers then have daily abdominal x-ray to track their progress) (I'm having this test next week) My gastro problems are probably FODMAP intolerance causing diarrhoea, Small Intestinal Bacterial Overgrowth and possibly delayed gastric emptying. On a FODMAP free diet I go from diarrhoea 8-16 times per day to total constipation which makes me think that my underlying GI transit time is actually slow and the diarrhoea is due to the osmotic effect of undigested FODMAP sugars in my lower I system. Sorry there is a lot of GI stuff there that may or may not be related to my autonomic dysfunction and Ehlers-Danlos Syndrome. Flop
  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 said this would force my body to try to counteract the force of gravity. He also said when I needed to concentrate to do something I cold curl my legs up in the chair or elevate them but after doing the task I should put them back down again. Some of the initial measures to raise blood pressure include lots of water, lots of salt, compression stockings and abdominal compression. Many doctors also advocate raising the head of the bed on 2 bricks to encourage expansion of blood volume. I hope you get to see a specialist who can help you soon, Flop
  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 really worried as the only bathroom is upstairs but mostly I can now walk up with just a bit of tachycardia. If I am having a really bad day I use my hands and feet for extra balance / safety but I've been in the house nearly 2 years and have not yet fallen or fainted on the stairs. Maybe you could work with a physical therapist on stair climbing - they often have sets of 3-4 stairs to teach people who are recovering from strokes etc. Just my opinion. I hope you get to live in exactly the sort if house you want and if that means a stair-lift or some physio then good luck!! Flop
  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 blood. Don't overdo either the water or the salt. I find putting a tiny sprinkle of salt into each glass of water is about the right amount. You don't want the water to taste salty, just enough to make the water feel soft in your mouth (if you try it you'll know what I'm talking about!!). Personally I like to use Himalayan salt as it has loads of other minerals, tastes good and us a pretty pink colour). Flop
  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 some hydrocortisone cream to rub on the welts. Within a few hours I was back to normal other than a few blotches on my arm. I started having injection desensitisation treatment for dustmite and will hopefully get pollen too this winter. My theory is that allergies cause the release of histamine into the body. Histamine is a potent vasodilator so lowers blood pressure. I find that having my allergies under control really helps my POTS symptoms too. Although I have to take mega doses of antihistamines Fexofenadine (allegra) 360mg twice per day (the usual dose is 120mg once a day!!).
  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 blood. I don't know why I got so tachy from lidocaine but it doesn't happen with the bupivacaine + epi. Another option is to talk to your dentist or PCP about taking small doses of a benzodiazepine before the visit to reduce the tachycardia response. My Dad has EDS and finds that 5mg diazepam the night before and 5mg an hour before allows him to tolerate treatment with no problems. Best wishes for your appointment, Flop
  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 charge moves more slowly without the help of the fast conducting bundle branch fibres. In some cases the bundle branch block can resolve in the early days after a heart attack but more usually it stays on the ECG as a marker of the old damage. In some people a bundle branch block is the only change on an ECG at the time of a heart attack. It will be helpful to doctors in the future if your Dad keeps a copy of his current ECG in his wallet. Then if he has chest pain in the future the ER docs can compare the ECGs they take with the copy of the ECG that is now "normal" for him. I hope your Dad makes a speedy recovery from his heart attack, Flop
  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
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