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Everything posted by bombsh3ll

  1. I don't know which country this is in yet, but it was on the news this morning that a woman who has been in a coma since 1991 has just regained consciousness. Assuming she has no motor/intellectual disability, it should soon be evident whether being immobile on your back for 27 years causes POTS. I will be following her story. I wonder if Dr Levine will too. B xxx
  2. I think the fact that your symptoms & functional capacity have improved over time, plus your young age are very encouraging in terms of prognosis. For those of us who are severe & chronic, the course is usually static or progressively worsens without remission (unless we find a new medication that helps for a time). I would definitely say keep exercising as much as you are able! I was very active prior to POTS & even since then have exercised nearly every day on a recumbent bike. Even if it doesn't make you better, it is good for your heart, lungs, circulation, muscle mass, sleep & mood & can help prevent complications like blood clots. B xxx
  3. I used to love the sun before POTS but have also been very intolerant to heat since. Luckily I live in Scotland where it isn't usually too bad. My little spray bottles of water that I keep in the fridge, cold pack for my head & fan are lifesavers. Funnily enough my hands and feet remain freezing cold, so on the hottest day so far I had my feet inside my electric foot warmer at the same time as dousing my face with water! For me I believe hypovolaemia is the culprit as we need an adequate blood volume in order to thermoregulate - hence uprights increase their blood volume naturally in the first few days when they travel to a hot climate, & athletes also seek to derive extra benefits from training in heat. B xxx
  4. That's so true! I do think that chronic cerebral hypoperfusion cannot do any good. Reduced blood flow to the brain has been implicated in the development of dementia, but no such studies have included or focused on dysautonomia patients, so I think that for us it is still very much an unknown. Given the condition was only formally classified in 1993 I think it will probably take longer before this becomes known, that is indeed if anyone is actually conducting any long term follow up of POTS patients. It may be that because we lie down at night, our brains have a sufficient period of adequate blood flow to refuel, nourish and detoxify, therefore negating some of the effects of daytime hypoxia. B xxx
  5. Bumping - not got many results... any other florinef takers?
  6. Hi Megan, Yep same here! Sounds like the very familiar symptoms of cerebral hypoperfusion. Have you had a brain scan though just to make sure everything is structurally sound? B xxx
  7. It is also not uncommon for people to be told tilt table tests are "normal"when they are not. If the person interpreting it is not aware of POTS, they may just see that there is no drop in BP and no deviation from sinus rhythm, and report the test as normal, despite an abnormally high (but regular) heart rate and/or rise in BP/narrowing of pulse pressure/grey, sweating, trembling patient reporting severe presyncope. This happened to me on my first tilt test - I could see my HR and BP were sky high whilst they were being recorded, but then the cardiologist wrote back saying it was normal. I have heard of the same thing happening to others many times over. B xxx
  8. I tried it and it was nothing more than a very expensive laxative. Please do not waste your money. B xxx
  9. My understanding is that if you have symptoms but do not meet the exact criteria for POTS, OH or NCS then it is classed orthostatic intolerance (OI), which simply describes symptoms when upright and does not reference any measurements. All of us have OI as part of our presentation otherwise we wouldn't be having all these things measured. I think it is how you feel though that matters more than a label, and if you are having significant symptoms that are interfering with your function and quality of life, they are deserving of treatment regardless of the official diagnosis. A lot of the treatment for orthostatic issues tends to be similar in any case, and a lot of it is trial and error. B xxx
  10. Most of that was done to me at UCLH, apart from the bare feet thing and the valsalva, which they would have done but my POTS was triggered abruptly by a forceful valsalva so I didn't do that part. I would love to know what info came from your feet! Strange such a high tech lab didn't do your catecholamines though. What medication do you find helpful? B xxx
  11. I've come to despise that particular nugget - like when do I get the chance to be upright then?! Having said that if you are going down anyway, it is definitely better to get yourself down safely if you can. I wish there was a better solution. Have you tried elevating your legs above heart level, like on a couple of pillows? Also something I do pretty constantly is spray my face with cool water from a little bottle. It is so simple & inexpensive & really does help me feel just a little less presyncopal when sitting. There is published evidence that facial cooling increases cerebral blood flow. B xxx
  12. Hi, what I mean is I am primarily looking for symptomatic improvement ie to not be presyncopal all the time, & to be able to be upright and function, & whilst I'm pleased that my blood pressure is no longer in the range that puts me at risk of stroke etc, having better looking numbers doesn't necessarily translate to feeling any better for me. I believe the underlying problem for me is low blood volume, causing low stroke volume, cardiac output & cerebral blood flow. These cannot be measured by BP or heart rate. Blood pressure is the product of cardiac output and vascular resistance, so you could have two people with the same BP who have vastly different cardiac outputs - one is high output with low vascular resistance, the other has low cardiac output and is very peripherally constricted (like me). Lowering the peripheral resistance in the second case doesn't improve the cardiac output if they are volume deplete. Did you feel better when your BP was lowered? That indicates a different underlying pathology if so - just shows how different we all are! B xxx
  13. Have you tried plasmapheresis? It gets rid of autoantibodies without the risks of IVIG. It tends to be short lived but could give you a helpful pointer re further immune treatment. B x
  14. I will do! My blood pressure is normal now I am no longer on licorice root, and BP lowering meds have never helped me even when it was high (apart from making the numbers look better) so taking those isn't an option for me. B xxx
  15. Well I always feel my best late at night and then like death again in the morning, I believe it is due to overnight volume loss so definitely a similar thing here. I do have the head of my bed raised but haven't found it helpful. Has the florinef helped?
  16. Mine too, although the drop is too brief to capture on a standard BP monitor, it was only seen on the continuous finapres monitor in the first 7 seconds then it overshoots. I believe mine to be the sympathetic nervous system on overdrive trying to compensate for low blood volume. I am looking forward to getting my catecholamine levels, assuming they are accurate. I have none! I've tried the famous water bolus thing even though my BP isn't low & concluded it was bunkum, so it is interesting to see someone who actually demonstrates this response! I also want to do the Celltrend test. I just don't think anyone in the UK would treat a positive result. Also, from what I can gather, pretty much everyone who does it tests positive for something on it which makes me wonder about the clinical validity, although granted these are all dysautonomia patients not healthy people randomly sending off their blood. If anyone has sent their blood to Celltrend and had a completely NORMAL result, I would really like to hear too. B xxx
  17. Lily, what symptoms/tests did your doctor base the low blood volume theory on? Did you have it measured? I truly believe this is a major issue for me. Regarding the EDS, I don't really feel stretchy veins could be the culprit in my case as my onset was so sudden, triggered by a forceful valsalva. I think more CSF leak or previously asymptomatic craniocervical instability tipped into becoming symptomatic due to the sudden increase in intracranial pressure. Compression of the lower brain structures could then lead to volume homeostasis disturbance. I mean, I've had the same veins all my life, three term pregnancies, no varicose veins, so why would they suddenly all become too stretchy after I tried to blow up a water balloon by accident aged 34? That's not to say others with EDS may not have an issue with stretchy veins, but surely that would develop insidiously over time? B xxx
  18. Octreotide has shown benefit for POTS/OI in a number of studies with no mention of VIP, so it might be worth looking into for you given that you do have elevated VIP. Do you have a decent specialist to discuss this with? Also whilst I am not advocating dishonesty, as a doctor myself (although no longer able to work), if a patient reports diarrhoea, you kind of have to believe them IYKWIM. Although that could open up another whole can of worms, colonoscopy etc. B xxx
  19. Thanks, it is really helpful to hear from someone with experience of the combination. I am guessing she has to have frequent electrolyte monitoring on the two? I also value the uninterrupted sleep desmo gives me when I take it, but I am sorry it is not helping with her main symptoms. My only problem is being unable to stand without severe presyncope though so different symptom pictures. I wish all of us could find something that helped. B xxx
  20. This can only really be confirmed by specialist testing, but you could get a basic idea by the appearance of the legs, for example is there swelling or change in skin colour after standing or sitting with feet down? Does the calf diameter increase? Are her feet cold or warm? Veins plump juicy & visible or shrunken & flat/invisible. Pulses strong or weak/not felt (google dorsalis pedis and posterior tibial pulse points for where to feel). Does she benefit from compression stockings? All of these can give clues but are not an exact science. Personally I feel I am overconstricted - no veins, no swelling, cold pale extremities, weak peripheral pulses, hard to get blood from, no benefit from midodrine etc. but I have never had this formally assessed. B xxx
  21. I'm so pleased your result has given you some peace. If it is mast cell, I don't have much knowledge about that but there appear to be a growing number of treatments that people find helpful. Look after yourself & don't feel you need to reply. Just know that you're not alone in this and people care about you on here even though none of us have met in real life. Losing your mother at the same time as becoming unwell is also a major double blow to deal with, & I am sorry you had to go through both at once. I hope you have other supportive people around that you can lean on. Look after yourself, B xxx
  22. I too have really disliked eating since developing POTS. Prior to that I loved my food although I was never overweight. Since becoming ill I would happily not eat and just drink fluids all day, but I force it down in order to maintain nutrition. Protein shakes are really helpful, an easy way of getting in some of your daily load. For me there are no correlations with type of food, only that small portions are easier. I was tested for coeliac - negative. My glucose has always been normal too even when I've fainted in hospital, so it isn't that either. B xxx
  23. That's interesting - I would really like to have the testing offered by Vanderbilt, particularly the blood volume test. We just can't get that in the UK. I believe my "hyperadrenergic" presentation is secondary to hypovolaemia as when I have been volume replete those symptoms, the chest pain, pounding heart, freezing cold extremities, sense of being full of adrenaline/impending doom, tremulousness are all reversible. It will be interesting to see what my blood catecholamines show, although I was only tilted to 60 degrees which isn't really close to standing. I would love to have tangible evidence of the blood volume deficit though. I am also no longer hypertensive now off licorice, although my BP and HR still go up when I stand, just not to the same levels. I have no reason to suspect neuropathy, although due to the sudden onset they did test for AChR antibodies. Have you identified the specific gene in your family? Clearly there is something heritable with that pattern. Nobody else in my family has it, although my dad and son have minor features of EDS like me. I don't believe EDS is causing mine although I am also being assessed for CSF leak and craniocervical instability. Those would be the only ways in my opinion that EDS could cause such a sudden onset. It must be hard knowing you could have passed it on. My one consolation since becoming ill, & something I reassure my children is that it is neither contagious nor heritable so they will not end up like me. I hope that's true. I'm thankful my youth wasn't blighted by knowing what was in store! B xxx
  24. Hi yes I have seen one, he wasn't actually that helpful although he did give me two hypertonic saline tests for diabetes insipidus. The first was inconclusive, the second negative. He advised me to only take desmopressin in low dose and very occasionally at night as I tend to run hyponatraemic. He offered me a 3rd hypotonic saline test saying there was still about a 20% chance I have some degree of central DI, but I declined as it was brutal and I don't see how it would change my situation if I can't take very much of the treatment for it. I have had polyuria all my adult life, but I had my first major postpartum haemorrhage at 18 and another life threatening one 14 months before the onset of POTS, so there is the potential for some pituitary damage (Sheehan's syndrome). My MRI of my pituitary was normal however and other pit hormones also all normal. He was an elderly professor, very old school and at one point suggested the benefits I initially derived from licorice root (which promotes volume expansion) could have been psychological - I later found out he had personally published several articles many years ago on its mineralocorticoid effects, along with a no longer used drug carbenoxolone. Well yes I was euphoric taking it because I was no longer lightheaded & passing out & could walk!! He also wrote off my undetectable renin and aldosterone as the result of a "typical Western diet" - without asking me anything about what I ate. I asked why everyone else eating this presumed diet can stand up except me, for which he had no answer. I haven't been back since because I got my main objective from his clinic which was a referral for health board funding to attend the autonomic clinic in London. I do think that most if not all of my problems stem from volume depletion, but the problem is I had horrible side effects with fludrocortisone, the only drug available to replace aldosterone, and without mineralocorticoid activity it is dangerous for me to take desmopressin. I am going to have my follow up call with the autonomic unit next week with the results of the tests they did, and discuss a retrial of fludro +/- desmo at a very low dose. I never tried a quarter of a tablet and always had licorice root in my system when I took it previously, so it may be worth revisiting. Still, my problem could be autonomic as it is the ANS which tells the kidney to produce renin, leading to the volume retaining RAAS cascade, and similar hormonal deficits have been found in POTS patients in various studies, but it is definitely an angle I would like to pursue further. B xxx
  25. Next week I will hopefully receive the results of my autonomic testing from UCLH in London. I had a stand test, and a tilt table test to 60 degrees, both of which confirmed POTS. Pulse pressure narrowed to 20 with increase in diastolic BP to 102 on the stand test, BP went up to 150/98 initially on the tilt test then gradually came back to around 125/90s, still jumping up and down a bit. Max HR was 120, with increment of about 40bpm. I also did some breathing tests lying down but NOT a valsalva as that is what precipitated my POTS onset. I do not know the significance of those but believe it relates to sympathetic/vagal balance and heart rate variability. My blood catecholamines were tested supine and after 10 mins of tilt. I was surprised I lasted that long but I was allowed to keep on my compression tights, was well hydrated, unfed and had taken 5mg diazepam prior. I am a little unclear despite a lot of reading about how subtypes are determined. I strongly believe I am hypovolaemic and narrow PP with raised diastolic would fit in with that, but am not sure if this is considered a subtype on its own. I have read in some places that hyperadrenergic pots is determined by a BP rise on standing/tilt, which mine does, and in other places that it is identified by catecholamine levels. Some authors refer to high levels supine, and others to either a defined increment or certain cut off level on tilt. The team were very nice but less knowledgeable than the average patient, so I would really like to hear from anyone diagnosed with a particular subtype by any of the top clinics/specialists how that was arrived at. TIA, B xxx
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