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flop

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Everything posted by flop

  1. Vlinder, your English is good and I can understand everything you write. Well done for searching out information not in your own language - it must make learning about POTS harder for you. We have lots of international members on the forum and you will soon make friends here. Flop
  2. Nmorgen, I used to take some really good quality vitamins and probiotics from a UK supplier. I am in the USA at the moment but when I get back home I'll look up the company for you. If I haven't posted in a week's time, send me a PM to remind me (just love brain fog and forgetfulness!). Flop
  3. One of the best ways to see if someone is dehydrated is to take samples for serum osmolarity and urine osmolarity. The urine sample should be collected at the same time as the blood is drawn. Then the results can be compared to see if you are dehydrated. Another test to see if you are taking enough salt is to do a 24 hour urine collection for sodium. You need to ask for the sodium as mmol/24 hrs. If the result is less than 170 mmol/24 hrs then taking more salt should make you feel better. Flop
  4. I've posted before about Himalayan salt - it seems to help me. Rather than drink Gatorade I put a tiny sprinkle of Himalayan salt in my drinking water (it should feel soft in your mouth but not taste salty). Flop
  5. Elizabeth, I like to take Ginger by making a hot drink. Buy some fresh root ginger (light brown nobbly stuff in the vegetable section of most supermarkets). Make thin slices of it (leave the peel on) (about 1-2cm total depending how fat the ginger is). Put the slices in a cup, squeeze in some fresh lemon (and chuck in the lemon chunks too), add hot water (not quite boiling) let it cool slightly then enjoy. You can add sugar or honey to sweeten. Also good for treating colds. Flop
  6. Tablet, I think that your doctor is wrong. Your heart rate jumped up more than 50/min at the start of the tilt. As far as I understand that means POTS. The criteria are "an increase in HR of 30/min or to more than 120/min within 10 minutes of upright tilt" (this is why many TTT are only 10-15 mins as most POTS shows up early but there are some forms that only show on prolonged TTT). Once you get your TTT print out maybe you can get an appointment with someone more knowledgable about POTS to get it interpreted? Flop
  7. I know many people on the forum get migraines. Have simple painkillers like ibuprofen (motrin) helped at all for you? There must be some sort of migraine treatment that doesn't drop your BP - sounds like a neuro consult with someone interested in headaches might help you. Hope you get some relief soon, Flop
  8. It might be worth calling his office and asking if he treats POTS and autonomic dysfunction. If he doesn't it probably isn't worth going back to him if you got the oh so common mis-diagnosis of stress last time. Hope you get the help you need to get your disability insurance sorted out. Flop
  9. Emy, sorry if my post wasn't clear. What I meant was that the advice I was given was to put them on in the morning (every day) and take them off when you go to bed. This gives you the maximum benefit for when you are upright. I think that if you wear them 24/7 your body gets used to the compression and you end up not getting the full benefit when you are upright. So new stocking users should take off at night. Issie is in a different situation - you may need to wean off wearing stockings at night, possibly by using a lower compression at night and higher compression during the day?? Flop
  10. Hi Tilly, sorry to hear of your berevement and the horrid time you are having with the ectopics. I think that you are right about the link - any kind of emotional upset can mess up the autonomic nervous system more than usual. This also makes you more aware of things like ectopics that you may not have been aware of previously. Anyone remember their heart thumping and thudding before exams??? 33 in 3 hours (one every 5 mins) is really quite normal just that most healthy folks wouldn't even notice them. Even one every minute wouldn't be considered abnormal by a cardiologist. In healthy people the number of ectopics per minute will decrease on exercise. I know that you are severely limited in the activity that you can do but even pottering about the house may help reduce the frequency of the ectopics. Also distraction can help reduce the impact that they have on the rest of your body. It might be worth avoiding all caffine and seeing if that helps (if you haven't done this already for your IST). When lying down try lying on your right side rather than your left as that makes you less aware of ectopics. I hope the symptoms settle soon, but in the mean time try not to worry about the unplesent thuds as they are not dangerous just horrid to experience. Hugs, Flop
  11. Hi tablet, do you have the actual numbers from your TTT? In particular the supine heart rate, how high your HR went and how fast it went up? Do you know what happened (if anything) to your BP during the TTT? If your HR went up 50/min at the start of your TTT then it would suggest autonomic dysfunction / POTS. Flop
  12. Hi Ericka, the thigh-high hose come in two varieties. One are the self-hold-ups which have sticky dots (usually containing latex) inside the top seam that are supposed to stick to your skin. The other sort need a suspender belt to hold them up. Hope this helps, Flop
  13. I forgot to say that I wear 40 mmHg knee-high stockings (my UK Cardiologist isn't familiar with the specialist directions re waist high compression). I get on best with the "elegance" stocking from "Mediven". Flop
  14. The advice usually given by the POTS specialist doctors (in published articles and books) is to wear the waist high support hose at 30-40mmHg compression factor. They should be worn during the day when you are upright and taken off when going to bed. Wearing compression continually will mean that you loose the benefits when upright. When I was in hospital after my wrist surgery earlier this year they had me wear standard TEDS (knee high stockings at 14mmHg to prevent DVT) but the nurses came round everyone and took them off at night. In the UK I see a vascular specialist nurse to get fitted for my stockings and she always tells me to remove them before bed. Flop
  15. Just to clarify a few medical terms: Bradycardia = slow heart rate (<60/min) Tachycardia = fast heart rate (>100/min at rest) Hypotension = low blood pressure Hypertension = high blood pressure Postural = happens with a change in posture Orthostatic = when standing still POTS is defined as a rise in heart rate of 30 beats per minute or more on standing from lying. People with POTS often have blood pressure problems, either too high, too low or a BP that swings all over the place. You can have any combination of fast or slow heart rate with either high or low blood pressure. "Normal BP" is often quoted at 120/80 but to be honest hardly anyone in the world actually has that blood pressure. An individual's BP will vary a lot over the course of a day so doctors sometimes use a 24 hour BP monitor to try to get a picture of what your BP does over a wider timeframe than just during an office visit. Doctors usually like the systolic BP (the higher of the two numbers) to be less than 135, and the diastolic (the lower number) to be less than 90. If you are diabetic or have known ischaemic heart disease then they may aim for a little lower than this. Technically there isn't a number for BP that is "too low", it is much more based on symptoms. If you have a BP of 80/50 but feel well and active without going dizzy or lightheaded then it would be considered "normal for you" but other people may feel dreadful at pressures much higher than that. Ultimately we are all unique and our HR and BP will do our own whacky dysautonomic thing. Generally it is helpful to know what your own "normal" HR and BP are. Taking your pulse regularly both lying, sitting and standing and after exertion can provide valuable information for your doctors. If you have your own BP machine then you can also measure your BP and know how it varies. Flop
  16. Hi Sarah, are you experiencing the pain in your actual eyeballs or in the eye lids? You mention swelling of your eyelids - florinef causes fluid and salt retention and can cause swelling of feet, ankles, fingers etc. As the eyelids are very loose tissue I guess that they could swell from fluid retention. Another time that eyelids can swell is as part of an allergic reaction (angioedema). I would suggest calling your doctor and reporting your symptoms right away - hopefully they can work out if it is a side-effect or an allergic reaction. If you are getting pain actually in your eyeballs or notice any change in your vision at all then I would get it checked out immediately at the ER. Hope you feel better soon, Flop
  17. I don't think that using the cast iron pan could cause your hair to change colour. Hair is dead tissue (keratin) so any change from diet etc would only show in new hair growth at the roots. Hair colour is due to melanin (the same pigment that causes skin colour), again changes in colour would occur slowly over time. Flop
  18. Hi Sue, there are other parts of a Full Blood Count (UK FBC, USA CBC) that would give clues to anaemia. The size of the actual red blood cells (MCV = mean cell volume) can be a big clue. If you are deficient in iron (eg from bleeding, from poor absorption in the gut or from lack of iron in your diet) then the red cells are smaller than normal. Having overly large red blood cells can also be a sign of anaemia - large cells are often a sign of vitamin B12 deficiency. So if your MCV is normal it is much less likely that you have undiagnosed anaemia. Flop
  19. The forum is still at the ipbhost address at the moment - the new look is due to an upgrade of the software in use - all part of the big move to the new location. Please note that if you can't remember the URL for the new forum location (posted recently by Michelle) there will be a link from the main Dinet website to the forum so you can find us that way. Hopefully everything will progress smoothly but any major IT change can produce unexpected problems so if you can't access the forums please be patient and try again later. Flop
  20. Pott's disease is diagnosed by testing for Tuberculosis and spinal X-rays. Pott's disease is not an autonomic problem and does not cause autonomic symptoms. POTS due to spinal cord injury would be tested for exactly the same as other causes for POTS (ie tilt table testing showing tachycardia during the head up tilt). Flop
  21. Deep breathing causes you to "blow-off" carbon dioxide. This changes the pH of the blood and can trigger all sorts of symptoms. This is why people having panic-attacks can feel so ill during an attack and feel breathless despite actually over-breathing. Doing a few slow deep breaths can be helpful but fast deep breathing or prolonged deep breathing should be avoided. Flop
  22. I healthy people it is normal to experience palpitations (heightened awareness of heart beat) when under high pressure / stress situations. I remember getting horrible thudding heart beats whilst queueing up outside exam halls at school. I think in people like us with autonomic problems we are more in-tune to autonomic symptoms like palpitations than the typical person. If your heart rate isn't excessively high for you (everyone has their own "normal" range!!) and you still feel relatively okay then I wouldn't worry about the palpitations. Flop
  23. One technique I have seen used in an A&E to teach people the valsalva manouvre correctly is to take a 10 or 20ml syringe (without needle!!) and put the narrow end in your mouth and attempt to blow the plunger out of the syringe (it perfectly re-creates the pressures of forced expiration against a closed glottis). Maybe your daughter's doctor could show her this technique. Keeping a plastic syringe in her bag would be an easy way for her to remember how to treat her SVT herself without needing assistance from friends. Flop
  24. Pott's disease is extrapulmonary Tuberculosis (ie TB but the infection is outside the lungs, often in the spine). I think that your grandmother's doctor probably does understand that you have POTS as in autonomic dysfunction but that he/she doesn't understand that there are many causes for POTS (most of which are unknown). People with spinal cord injuries often have autonomic problems due to their cord injury. In fact Prof Mathias the UK POTS expert did a lot of his research on spinal cord injuries. It would be very unusual for scoliosis to cause a spinal cord injury! I hope that your family are able to explain things to your grandmother's doctor and that she gets the right tests and treatment to get her feeling better. Flop
  25. I would call the hospital closest to your campus and directly ask how much a cardiology consult would be a) in the ER as an outpatient and c) as an inpatient. They should have a billing department or similar that could give you rough numbers. Can you get additional insurance on top of the grad policy? Flop
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