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bombsh3ll

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Everything posted by bombsh3ll

  1. Bumping... Andy where did you get to with your autoimmune results from Celltrend? I went to UCLH and the only autoimmune test they did there was the AChR3 receptor which is a lot less comprehensive than Celltrend. Just wondering if your results have got you anywhere in terms of deciding whether to get tested with Celltrend myself. Hope things are going well for you. B xxx
  2. Hi dancer65, Who is your POTS consultant who agreed to this? I have found POTS specialists in the UK hesitant re desmo even Dr Gall who was familiar with the evidence from Vanderbilt. I have to import mine from Europe. It doesn't help me POTS wise but having it does improve my quality of life re sleep and polyuria. Do try a very small dose at first. I took the nasal spray (1 spray being equivalent to 0.1mg orally) and it was WAY too much. 0.33mg gives me a full night's sleep. You should see one asap if you are taking those doses of desmo daily & have not had testing. 0.2mg bd is in the range of treatment doses for full DI. Is your blood sodium being monitored? B xxx
  3. PS I also struggle with eating enough with POTS & I don't have gastroparesis, it is just that when you are so lightheaded you feel nauseated and don't want to eat. When you are volume replete and getting enough blood flow to your brain, the appetite improves unless you do in fact have something else as well. Definitely worth having a GI issue excluded though and I second going to the hospital if you aren't able to maintain your oral intake. B xxx
  4. Couple of ideas - have you seen an endocrinologist? If that doesn't work out, a urologist might be worth seeing if you have significant night time polyuria (and who with POTS doesn't!) Emphasizing the nocturnal polyuria rather than expressing a wish to be able to stand or walk though is more likely to be successful with a urologist as they may be scared off by dysautonomia stuff! Also, if you are in the US and have doctors who accept that saline benefits you, is there any potential for having longer term venous access placed & regular infusions? B xxx
  5. Hi kkirsten, I'm so sorry you're dealing with this so young, my heart goes out to you. I can totally relate to the feelings you describe. I am also in the UK (Edinburgh) & know what a struggle getting help can be. I too have yet to find a helpful treatment, but remain hopeful that one day I'll find something that will improve my quality of life. In the beginning I tried Licorice root capsules from Swanson which can be bought online. I didn't expect much from a herbal product but the effect was phenomenal, something no drug has been able to do. This only lasted about a year, but it may be worth a try just to get you out of a slump/tide you over until you see Dr Gall. Exercise is also recommended - I am only really able to do recumbent cycling but if licorice gave you the chance to start some serious upright exercise, doing this may also help you pull out of it. I wish I had pursued upright exercise more when licorice root was working for me, instead of just being thrilled that I could sit comfortably and walk a bit & content with that thinking it would last forever. If you are still figuring out what to do about salt/fluids, I find drinking oral rehydration sachets better than either ruining my food with salt, mixing salt in water or taking salt pills. I wear both knee high compression socks then compression tights over the top - your GP can prescribe these if you don't already have them. I would be really interested in hearing how you get on with Dr Gall, as I have thought about seeing him myself. How long is the wait privately? Best wishes, B xxx
  6. That happened to me, however I have never tried it without having licorice root in my system at the same time. I have also never tried it whilst not salt loading which I no longer do (although I still drink 2-3 litres of oral rehydration solution which has salt in), nor started with a really small dose. That's strange unless he meant the diuretic types like Yaz, & even that would not be used for the purpose of BP reduction. Usually estrogen containing BC has hypertension as a potential side effect. I'm primarily looking for the volume enhancement rather than BP numbers per se because my BP is normal. I have heard of many patients reporting improved orthostatic tolerance on it but also a few whom it made worse. I was on it when I got POTS so would definitely not want to have a natural menstrual cycle with POTS! B xxx
  7. Sometimes I take 1/6 of a 0.2mg tablet at night ie 0.033mg. That is enough for me to get a break from the polyuria & have a full night's rest. I am sensitive to small doses as I have no endogenous ADH production. It doesn't help me stand though and I don't tolerate higher doses (not peeing for a whole day, worsened headache and high BP), and would find the necessary fluid restriction difficult if I were to take it during the day, although I have on occasion eg for a long journey. I am also at risk of hyponatraemia due to mineralocorticoid deficiency, so my endocrinologist advised me not to take it more than 2-3 nights per week. I am glad it is helping you, do you have a diagnosis or been tested for diabetes insipidus? B xxx
  8. Really encouraged that florinef seems to be going the distance for those who have voted! I just don't want to go through the same again thinking I've found a magic bullet then it dumps me, but on the other hand I really appreciate the quality of life licorice gave me for that year or so when my daughter was a toddler. She started walking just a couple of weeks before I lost the ability to, & the licorice gave me a bit of that back. B xxx
  9. That's really interesting because the two things I am considering retrying just now are florinef and combined hormonal birth control. Did you find the HRT helpful POTS wise or were you on it already and didn't notice any difference? I stopped licorice root because I felt it was no longer helping and also I was having very high BP spikes which have since lessened greatly although I am still presyncopal all the time. I ditched the Nuva ring (estrogen and progestin) which I used continuously to avoid menstruation at the same time (again due to high BP) although I am sure the ring had nothing to do with it, it was more the risk of stroke etc. I changed to cerazette (progestin only pill) which does the same but creates a low estrogen state in the body which I am concerned about as estrogen has fluid retaining properties. If I were to add something back in I would only change one thing at once in order to determine the effect. I have tested low on both of these. Clinically I identify with these too. I should find out my plasma catecholamine levels in a couple of weeks. B xxx
  10. A big thanks to the DINET family! I am so grateful for the opportunity to learn & connect with others in the same position. I cannot imagine how much more alone I would have felt dealing with this illness before the days of the internet. Many if not most of us would remain undiagnosed given we usually have to discover and present the information to our doctors ourselves to get the appropriate referrals and tests, and would probably never come across anyone dealing with the same problem. B xxx
  11. That's really good to know! It is hard to tell whether I am more presyncopal or not now that I am completely clear of licorice root. My BPs are generally normal now & electrolytes holding steady although sodium remains bottom of range. On paper I should feel great, but of course we can't measure the things that really mater like cardiac output & cerebral perfusion. What dose do you take and does/did it cause any headaches or worsened adrenergic symptoms? Blimey I didn't know that either. I would also love to read about these and see if any fit me, if you have a link to any info. I "feel" hyperadrenergic and appear very vasoconstricted, and my BP goes up rather than down when I stand. I am still awaiting blood levels of catecholamines from my recent tilt test. I had blood drawn supine, then after 10 minutes of 60 degrees tilt. That center only tilts to 60 degrees whereas I know others tilt to a higher angle so how a point of reference can be determined with different test conditions I don't know. Is the "Hyperadrenergic" label applied based on blood catecholamines, clinical picture or both? Subtypes are not really determined in the UK, it is just "POTS". I tend to think though that my SNS activation is appropriate compensation for low blood volume rather than a primary state. B xxx
  12. Yes, I do notice on this site more "older" POTSIES. I consider myself lucky to have got to the age I did before getting sick. Did you ever try florinef at any point before being identified as hyperadrenergic? B xxx
  13. Encouraging to see someone still going strong on F. I wonder if there is a variable time course for the drop off in volume enhancement? I found the following study: http://www.clinsci.org/content/61/s7/97s which seems to indicate this differs between individuals, with younger people enjoying increased cardiac output for longer. (I'm 39, was 34 at onset) so would be closer to the younger patients in this study, but realize I am probably older than the typically portrayed POTS female getting it in teens/20's. B xxx
  14. I think the more information you can get about what is going on, the better. I can totally understand your daughter not wanting to do another TTT - I also swore I'd never do another but I recently did during inpatient testing, as this was the only way they would draw my supine and upright catecholamines. It wasn't as bad, as it was only to 60 degrees, I also kept my compression tights on and had taken diazepam, which may have reduced its accuracy but made it doable where it otherwise would not have been. The kind technician also sprayed my face with cool water from my spray bottle that I use to help stay conscious during it whilst my hands were strapped down. An EEG during tilt is a great idea. I would also love to know if anywhere does transcranial doppler during upright tilt to measure cerebral blood flow when tilted upright, as that would be really revealing in demonstrating the cerebral hypoperfusion that is not captured just by measuring BP and pulse. Best wishes for your daughter if she does go ahead with the testing. B xxx
  15. Kkirsten, The only reason ibuprofen is recommended to be avoided with beta blockers is that the latter were historically, & often still are, prescribed for hypertension. People on any BP lowering meds are advised to avoid ibuprofen & other drugs in its class as these can raise blood pressure, antagonising the effects of the BP med. In general, if you are taking the beta blocker for another indication and are not hypertensive, ibuprofen should not pose a problem. (check with your doctor that there are no other contraindications personal to you). I actually find that ibuprofen provides a tiny bit of relief from my lightheadedness taken sparingly as it helps retain sodium and fluid in the short term. Best wishes, B xxx
  16. This was from Horacio Kaufmann, Italo Biaggioni, inBrocklehurst's Textbook of Geriatric Medicine and Gerontology (Seventh Edition), 2010 B x
  17. I am currently debating whether to give low dose fludrocortisone another try as a volume booster. I had great effects from licorice root which lasted about a year then wore off. Do people experience this with florinef also after a honeymoon period? I have found the following statements in my research regarding the drug suggesting that the volume expansion is not sustained long term: "Fludrocortisone binds to the aldosterone receptor, which increases activity of the distal tubule of the kidney, causing enhanced sodium ion and water transport into the plasma, and increasing urinary excretion of potassium and hydrogen ions (Campbell 1975). Its effect on alleviating orthostatic hypotension is largely thought to be modulated through these actions. With chronic use, a BP‐raising effect may persist, even though sodium retention and overall plasma volume normalizes through increased peripheral vascular resistance (Armstrong 1991; Chobanian 1979; Freeman 2003; Hoeldtke 1993). Other potential mechanisms may include sensitization of the vasculature to angiotensin II and norepinephrine (Hickler 1959; Van Lieshout 2000)." and "This pharmacologic action leads to sodium and water retention, but this effect is not targeted to the intravascular space and is only transient. It is postulated that its improvement in orthostatic hypotension is due to potentiation of the pressor effects of endogenous vasoconstrictors such as norepinephrine and angiotensin II. " If you currently or have ever benefited from florinef I would love to know about this. I only want volume expansion, am vasoconstricted enough! I don't understand why the volume effect would only be transient in dysautonomia yet it is good enough as a lifelong aldosterone replacement in Addisons patients, who like me produce no aldosterone. Many thanks! B xxx
  18. Hi Trying, I am sorry you are dealing with the funding side of things as well. Sometimes I envy the care people in the US have access to (I am in the UK where state healthcare is free but very basic & limited especially for uncommon conditions), but I see there is a dark side to the system there too. If it is a TTT specifically that Jennifer needs, I have heard of people who were denied by insurance at first having success with approval if the word "syncope" is used (that is if she does or has ever passed out from it). Best of luck getting access to the tests. B xxx
  19. Hi Spiders, sorry you are dealing with this too. I have similar scary BP episodes, mine goes up when I stand (no longer to worrisome levels now off licorice) but also out of the blue as well accompanied by tachycardia (tested negative multiple times for pheochromocytoma). I also do not have a formal POTS category - here in the UK it generally stops at "you have POTS, goodbye" (if you are not labeled anxiety, hypochondriasis etc) however I did get supine and tilted catecholamines tested last month and am awaiting the results. Clinically I seem to fit a hyperadrenergic, hypovolaemic "low flow" type, but believe my high SNS activation is secondary to volume depletion. I did not get on with midodrine (HR in 40's BP 190/110, felt awful) or beta blockers (even worse lightheadedness/OI). If you are having BP spikes like that, midodrine may not be the best for you either - it tends to help those with more blood pooling/inadequate vasoconstriction more. I really believe my problem is poor blood flow as opposed to low blood pressure. It frustrates me that many doctors do not seem to grasp the difference. I too wonder how I would have done on just a tiny starting dose of florinef - quarter of a 0.1mg tablet. So far my sodium and potassium have held steady without mineralocorticoid replacement. Do you plan to give the florinef another try at a lower dose? What symptom benefit did it give you? Less lightheadedness & more ability to stand is what I am looking for. Best wishes, B xxx
  20. I just went to the only autonomic unit in the UK for inpatient tests last month. The only outcome was that they confirmed the diagnosis of POTS (which I've had for nearly 5 years) and recommended "reconditioning" as the only treatment. This was from a middle aged, considerably overweight consultant whose only exercise probably constitutes the ward round. I may not be able to stand but I bet I could whoop his pot bellied a** on my recumbent bike any day of the week! Unfortunately I got my results by letter or I would have told him that. B xxx
  21. Hi, if tachycardia is your main issue have you tried any medication to control that? You may then find exercise easier. Do you have symptoms along with the tachycardia? B xxx
  22. Hi Aida A, Yes I too am constantly lightheaded even sitting, with normal HR and BP! I would love to know if anyone finds a solution to this. As a doctor myself I don't use the term "dizziness" as that can be interpreted as vertigo/spinning sensation which is very different both in symptomatology, cause and treatment. I believe it is due to cerebral hypoperfusion due to low cardiac output or "low flow POTS" as Kim mentioned above. Peripheral measurements of pulse and BP do not actually tell you anything about a person's cardiac output as stroke volume needs to be determined for that, which can only be done with invasive/complex tests. So no you're not crazy or alone for feeling that way despite normal readings, nor is your machine off. B xxx
  23. Hi Kkirsten, I am sorry you are dealing with all this at such a young age. Where are you living? Have you seen a respiratory specialist? Unless there is something wrong with your pulse oximeter or your peripheral blood flow is very poor (beta blockers can worsen this) you should not regularly be having O2 sats below 94% if you are otherwise healthy. With dysautonomia, our blood has enough oxygen in it. We just either don't have enough blood, or we have enough but it is pooling and not getting up to our brains. Even so, what we have & where it is, it is adequately oxygenated unless there is something else wrong. For what you describe respiratory tests such as spirometry for asthma, possible CT pulmonary angiogram to rule out a PE (this is something you may struggle to get if D-Dimer is negative but you are a young female with chest pain, low O2 sats and history of OCP use so it is reasonable to consider) might be helpful and you could ask your prescribing physician to review your beta blocker as you are bradycardic and they are also not a great mix if you do have asthma/airway disease. Many people with dysautonomia report benefit with beta blockers but I personally am not a fan of them as they reduce cardiac output (even in healthy people) and drugs such as ivabradine & some calcium channel blockers which asthmatics tend to be prescribed in place of beta blockers. Beta blockers can also cause orthostatic hypotension which you mention having. Yes, they can lower a rapid heart rate which doctors & even many patients with POTS seem to see as the main focus, but it is more about how you feel and how well you function that matters, indeed the tachycardia in POTS is often (but not always) a secondary compensatory mechanism to the underlying problem (low venous return & stroke volume) - and additionally can be a symptom of a PE but that would not be orthostatic in nature. Please continue to advocate for yourself with your doctors, in particular express your concerns about a possible PE. B xxx
  24. Aida A, Although I am no longer able to work, Licorice Root capsules by Swanson (I took 2x 450mg caps/day which is the recommended dose) along with plenty of fluid and a crate under my desk to elevate my legs kept me able to work for much longer than I would otherwise have been, enabling me to make valuable mortgage overpayments and pension build up. Also make your employer and colleagues aware of your needs, this makes life easier for example if you need someone to swap a sitting task for a standing task or reorganize break times etc. Best wishes, B xxx
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