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I had no luck getting it from an endocrinologist either following two hypertonic saline tests for DI. One was inconclusive, the other negative. Endos are usually only familiar with this indication for it and are not experienced in autonomic disorders. The one I saw diagnosed "psychogenic polydipsia" - for following the fluid intake advice of the specialist who diagnosed my POTS! An autonomic specialist would probably be of more use in prescribing it for this indication, however it is important to have DI ruled out first. There are a couple of research studies that you can find & print out by searching for desmopressin & pots also desmopressin & orthostatic hypotension which may help you argue the case for it. B x

No it wouldn't, but I would expect the mayo to have tested your catecholamines in either blood or urine, although they may not have done if POTS was only considered after you left. You need to confirm that this has been done though & get your results. If catecholamines were high, it certainly doesn't mean you would definitely have one, but an abdominal scan should be arranged to look for one. I got pots at 34. Prior to that I had fainted a handful of times in my life, first time age about 12 & usually with a trigger such as watching surgery during medical school, or being pregnant. I was completely well in between though. B x

Hi AutoDrive2000, That's a bit bad they didn't offer you a face to face follow up appointment to discuss your results. Will you get a copy of the blood and urine tests you had? It is great that you've had your heart checked out & sleep apnoea excluded. Other common things to exclude that have probably been done are anaemia, thyroid problems, autoimmune screen and catecholamines. The latter is to exclude a pheochromocytoma (adrenal tumour that secretes noradrenaline & related hormones). It is commonly done as a 24 hour urine collection but can also be done as a blood test. Blood catecholamine levels are sometimes done lying and upright eg at same time as the tilt test to see how they increase with posture. Other things would depend on your personal and family history. If you were very flexible as a child or have had joint, skin or surgical complications, testing for a connective tissue disorder is sometimes considered. For example I have Ehler's Danlos Syndrome (weak and stretchy collagen) that can affect various body functions & is considered to be one cause of secondary POTS. I also had a lip biopsy to exclude Sjogren's which is an autoimmune disease that can cause POTS. I didn't have that. Not everyone gets tested for that especially if general autoimmune bloods are negative, but it tends to be considered in younger females with sudden onset/severe POTS especially if they have dry eyes and mouth (I do). I hope you manage to see a specialist soon. It seems a shame to go somewhere with the fantastic reputation of Mayo and come away with just salt water and compression socks, which anyone who can use google can find out! Do try the compression though and get chugging, both of those things do help me albeit minimally. The most important thing I would say though is move as much as you can. Don't get deconditioned if you can help it as it makes POTS worse (although I do not believe in the slightest that deconditioning causes POTS in the vast majority of cases, as has been postulated by some.) B x

Hi AutoDrive2000 & welcome (although I am sorry you find yourself here). Yes, to me your TTT results are typical of POTS. I too usually have quite a low supine HR & my uprights don't go much higher than yours, but it is the 30+bpm increase, plus the symptoms of orthostatic intolerance that are diagnostic of POTS. I think at the time you went to Mayo, if fatigue was your only symptom and you had no problems with syncope/presyncope/lightheadedness/chest pain/sense of non-psychogenic anxiety/tremulousness/uncomfortable tachycardia or palpitations etc etc... in the upright position, you may not have strictly met the criteria but it sounds like you do describe some of them now. Were you given any treatment at Mayo or any other tests to rule out other conditions or underlying causes? I live in the UK so have no experience of US healthcare, but what matters about choosing a specialist (if you can), is to seek someone who is familiar and experienced with treating dysautonomia patients, not just any old cardiologist UNLESS they are particularly receptive to reading up on the current research and work with you to try out various approaches. I would take someone with little or no initial knowledge but interested and willing to learn, above someone who may have heard of POTS, treated a couple of patients & thinks beta blockers are the be all & end all & won't entertain anything else - particularly with a low resting HR! Best wishes, B x

I would love that, I seem to have tried pretty much everything already but do you mind sharing what you take to get vertical? B x

I am looking forward to trying the rowing machine! I had another good workout on my bike last night, however became very unwell about an hour after it which was a real blow. I managed my prescribed time & HR zones, felt OK during & really proud afterwards. I'm always lightheaded when I crawl back into the house & into my recliner from the bike in the garage, but usually feel my best all day once I have recovered. My husband and I watch TV for about an hour then get ready for bed. All was fine until I got up to get ready for bed, this is usually my most functional time of day, I get the kids' things ready for morning etc, but last night I was really hot & presyncopal, & my HR was up in the 130s. It settled to under 100 when I got in bed, and by the time I checked my BP then lying down, it was 127/83 which is about normal for me but high for lying down. My heart continued to pound all night with horrible adrenaline type feelings & I got no sleep at all. I didn't think I was going to be able to get up this morning, but I did, & my HR is back in its normal range, but I still feel a bit worse than my usual presyncopal, splitting headache state. This didn't happen after my first intense Levine protocol workout & was unexpected. I have heard people say exercise makes them feel worse in the short term & it is to be expected, but they seem to mainly be referring to fatigue which wouldn't bother me & I don't really identify with as a symptom - how does a chairbound person get fatigued?! but I didn't know to expect worsened presyncope, tachycardia, shaking etc. I had eaten a snack when I came in so wasn't hypoglycaemic. I am guessing this was probably post exercise hypotension/vasodilation, which I read about and seems to be a physiological response but obviously poorly tolerated in a POTS patient who is usually intensely vasoconstricted & clinically hypovolaemic. Did/does this happen to anyone else? I will be more prepared for it next time & have everything ready for the next day so that I can just go straight to bed after recovering watching TV and not expect to be on my feet at all afterward. I understand it is partially histamine related too and may also try taking a antihistamine before exercising. I would really like some reassurance that this is common & gets better. I had been so encouraged after my first Levine intensity bike session! B x

That's OK you would probably have noticed if there was a strong orthostatic component to them. I have been reading Dr Carroll's work on the issue of POTS vs CSF leak vs both, particularly in EDS patients, as the symptoms can be very similar. All my troubles began with a very forceful valsalva. I know we all long for a treatable cause, I'm not getting my hopes up, but a small number of people fitting this description have been found to have CSF leaks and helped by treatment. There was a small study comparing patients with a diagnosed CSF leak to patients with POTS but no leak; 100% of the patients with a CSF leak had orthostatic headaches and 100% of them met the upright HR diagnostic criteria for POTS, whereas by definition all the POTS patients without a CSF leak also meth the POTS criteria but only 27% had orthostatic headaches. B x

Lying down on it is only an issue if your BP is high lying down. If you lie down and your BP is normal, that's fine. If it works, you may find you don't need to lie down all the time anyway! I tried it and it didn't help me, but my BP isn't low and the good thing about it is you can just try it and if it doesn't suit it is out of your system in a few hours. B x

This is a major issue for me and I am waiting to have a CSF leak ruled out, however I understand a significant proportion of POTS & other dysautonomia patients get orthostatic headaches in general, which are only present when upright and relieved by lying down. I would be really grateful if you can vote to give an idea of how common this symptom is in a dysautonomia population. Note if you get headaches but they are not related to position, please select "no". Thanks so much, B x

Wow I'm the opposite - I don't think I'd be able to get anywhere near my supposed max HR for age without an ambulance ride! The way it is calculated, I found myself not for the first time glad I am not dealing with this in my teens! I can be exercising really hard on my bike and still well within the base pace zone. Fortunately, the first 3 months don't seem to require going beyond the max steady state, which I might just be able to scrape into the lower end of if I go absolutely flat out! Do you/have you used a rowing machine at all? I tried one years ago in the gym when healthy but didn't like it, I found it really uncomfortable and difficult, but reading about how Levine favours this as rowers have the biggest hearts/blood volume, I've been thinking about trying it again. I found out I can hire one for home use for a trial - the "concept 2" same as the studies used. I am currently waiting for imaging to rule out a CSF leak due to EDS & the way my POTS started with a forceful valsalva, plus the splitting orthostatic headaches, so I am going to wait until after this as I read rowing is advised against if you have a leak, but if I've no sign of one I definitely plan to try it. I imagine it being much harder than the bike though! B x

I couldn't tolerate beta blockers, made me more synopal, I just have a low resting HR. I know I would probably "cheat" with the RPE scale too - oh that's the hardest I can manage huff puff! - whereas the heart rate doesn't lie. I have a polar watch with a chest strap. What I did realize is that up until now I probably haven't been working hard enough to benefit as I felt the effort way more when keeping in the prescribed HR zone. Just because I'd been on my bike for 30 mins before, pedalling at a certain resistance, I thought I was doing pretty well for someone who can't stand, but I must have been going at too leisurely a pace. I guess there will be no more reading or playing tetris whilst I pedal, just fast music! I kind of like the idea of target heart rates - I was thinking if I find this tough & I've been on the exercise bike since I've had POTS, how on earth does someone who doesn't already exercise just start this, but I suppose someone starting out wouldn't have to pedal as fast or as hard for their HR to hit the same level. Today is my strength training day, & I found some ankle weights that I used to wear back when I was a real gym bunny, happy memories! I'm going to do some floor exercises with those, but I think I will still do a shorter spell on the bike tonight as I feel I'd be going backwards dropping my cardio sessions from 6 evenings a week to 3. Come to think about it, with Dr Levine describing his program as "mild to moderate" exercise, it's made me question if I was ever really fit at all - in my 20's I measured success in the gym as looking like Barbie. I showed up in my gear & did the time, but the reality was probably that I was naturally slim anyway & wasn't actually putting much effort into working out. Seems so silly now! B x

Yep, been nauseated since POTS onset - for me it seems more of a cerebral hypoperfusion symptom than a GI problem. I took a low dose of mirtazapine to help with sleep and nausea for a couple of years. It helped me grain back the 6kg I'd lost. It is only licenced as an antidepressant in humans but it is a more potent antiemetic than any licenced drug I've tried for this indication. Mirtazapine does have a licence for veterinary use as an antiemetic - exactly the same as it works in humans - all our drugs go through animal trials before human use, and it is what your vet would likely prescribe for an anorexic cat. Most doctors will be aware of its appetite promoting/anti nausea effect and should be happy to prescribe. Licorice root was SUCH a blessing for me for the year it worked. I don't know about nausea but if you get the kind with the active ingredient ie non - DGL (I use Swansons) it may just help your passing out as well. B x

Wow that's amazing! Thanks I am sure I will have questions. The guide that comes with the protocol now it is being widely disseminated makes clear that the Levine team are NOT to be contacted for advice as they don't have the resources to help everyone outwith the research study, so it is good to find someone with first hand experience. B x

Thanks I'll def look into those. The CHOP modified protocol instructions show somebody using a rubber band & it sounds like it can be used to tone a wide range of areas! I will do that's really kind! I had actually contacted a couple of local personal trainers looking for someone to supervise my exercise initially - particularly in relation to trying to go to the gym where I wanted someone qualified who was there just to keep me safe & not have the gym staff panicking and calling ambulances - but none of them wanted a syncopal client or had heard of POTS or EDS. Well done you! It's so encouraging to hear positive exercise stories. I bought a treadmill back when licorice root capsules were working for me, but I detest the thing and am glad it isn't on the first couple of pages of the Levine protocol! Well, I just did day 1, month 1 - almost. I timed it wrong and started my cool down 5 mins early, but think it was about right for me. I do 30 minutes on my recumbent bike most nights, but can tell I worked harder tonight minding to stay in the designated HR zone, as I was sweating much more and my knees are sore. I am glad it proves to be more taxing than I've been doing so far, otherwise it would be disheartening if I'd been doing it all along without benefit. If that was the first session though, goodness only knows how I'll cope with the harder levels! B x

Have you been taking in lots of salt? I bought a big bag of lovely pink Himalayan salt once for a "treat" & that gave me diarrhoea (I have sluggish motility all my life due to EDS so am normally constipated) Magnesium? Often recommended in POTS - I use this specifically when needed as a laxative. If there's nothing you can identify, and you've been checked out by a gastroenterologist, then symptomatic treatment for the diarrhoea may just help your POTS too by reducing dehydration. Loperamide, buscopan or codeine are potential options you could ask about. B x

After much research and self directed exercise on my recumbent bike since soon after POTS struck, I decided to try and obtain the "top secret" Levine protocol. Surprisingly after what I had heard, I had this within a couple of days - I think things have changed now the research has finished and they are giving it out much more freely without any registration process or exclusions. It turns out I have actually been doing the cardio part of month 1, nearly every day, for 4 years, but no weights or strength training (I had thought the bike would take care of strengthening my legs). Also, I am not sure I have been getting/keeping my HR into a high enough zone consistently when on the bike. I have therefore decided to start the protocol doing my best to achieve the intended HR zones, from month 1. I would really love to hear from anyone who is doing/has done the Levine protocol and how it went. In particular, ideas for strength training lower body exercises would be welcome as it basically gave instructions for gym equipment but just to do your own thing if you can't get to a gym (I am housebound & even if I could get to a gym would soon be banned for recurrent syncope!) B x

Timed release pills are not designed to be broken up and must be swallowed whole. Get the smallest dose you can, or try back on a standard release form which can be divided safely, until you know how it is going to affect you. I personally did not find mestinon effective at all other than as a laxative. On the plus side there were no negative effects either, and it can be stopped straight away rather than weaning down. B x

Don't be taken in by people trying to capitalize on those with chronic illnesses who are desperate and will try anything. I have tried the DNRS and whilst I can see its usefulness in psychosomatic illnesses, anxiety etc, it isn't suitable for organic illnesses. I have EDS too and no amount of positive thinking or visualization will change the collagen I was born with. They didn't honour the money back guarantee either. If you do decide to try the DNRS, try and get a second hand copy which will save you money (I sold mine on ebay for less than half what I paid). B x

Results sound like POTS to me. Your HR shot up >30 bpm, systolic BP dropped by 20 then stayed about 15-20mmHg lower than supine readings. Some centres make no mention of BP in their POTS criteria, basing result solely on HR change plus symptoms. Others employ stricter criteria for POTS alone, ie BP should not drop more than 20mmHg. Yours didn't drop more than this, so by either criteria the description of POTS is met. Sympathicotonic orthostatic hypotension is an older term used to describe an orthostatic BP drop in the presence of an overactive sympathetic response (as opposed to the more common form of orthostatic hypotension where the sympathetic nervous system is underactive and the heart rate doesn't rise). It doesn't seem to be used much now - many of the people it would have applied to are probably now diagnosed with POTS. I hope you get to speak to your doctor soon to clarify things, and more importantly get a treatment plan. And well done for surviving the TTT! B x

I think we are playing Ivabradine tag - I'm looking to see how you do with it ☺️! My BP has never been low though since getting POTS, hence medication to raise it ie midodrine didn't do me any good. B x

Yes, I really thought I was going to get to enjoy the rest of my life when I first discovered Licorice Root! I had accepted not being able to stand by that point but LOVED to be able to walk and sit comfortably. It is a pretty common phenomenon in medicine for a drug to lose effectiveness over time unfortunately, as the body just adapts to it ie develops tolerance. Same happens with pain meds and benzodiazepines, the dose that helped a person becomes less effective, they need to take more and then that no longer helps and so on. Tolerance is very variable though between individuals, conditions and drugs so that doesn't mean that every person on every drug will eventually need higher and higher doses and eventually have no effect. I live in the UK where investigations and knowledge re POTS is very limited, however I strongly suspect hypovolaemia as the cause of my POTS as I produce no renin, aldosterone or antidiuretic hormone - these help us hold on to fluid in our blood vessels. Why I don't produce these is a mystery. I pass large volumes of very dilute urine. Licorice root partially replaces the function of aldosterone which is why I believe it helped me so much. I couldn't take synthetic replacements of these hormones though with florinef and desmopressin due to side effects. I am also much better late evening, when blood volume is highest. I also have Ehler's Danlos syndrome, which is commonly associated with POTS but again I don't believe this would suddenly cause it at 34 years old, surely lax blood vessels would be present throughout life and onset would be gradual. My POTS also seemed to come out of nowhere, but I was completely well until I tried to blow up a water bomb that I thought was a balloon. I blew so hard, I passed out, and have been presyncopal ever since & could never really stand again after that. I was 100% fit and healthy until that incident. I am waiting to be tested for a spinal fluid leak which could have been precipitated by it. There is some link between CSF leaks (which are commoner in people like me with connective tissue disorders than the general population, and can be triggered by a forceful Valsalva) and POTS. I recently came across this myself after seeing a Dr Ian Carroll talk on youtube, none of the doctors I had seen prior ever considered it. I hope you manage to find some relief. If you can, try to see an autonomic specialist. I am currently on Dr Grubb's waiting list and will travel to the US to see him. Best wishes, B x

Bellajulz, Ivabradine is the one medicine available for POTS in the UK that I haven't tried, but I do currently have some sitting in my cupboard. The reasons I have been reluctant to try it are 1) my resting HR can be in the 60s & even the 50's when sitting quietly, especially in the evening, and b) I strongly believe in my case the standing tachycardia is a physiological compensatory reflex to hypovolaemia & that suppressing it may make things worse. Do you actually feel less lightheaded & syncopal on Ivabradine, or does it simply reduce your heart rate? I probably should just take the plunge and try a very small dose. B x

I hope you manage to get some relief on your new combination Derek. I would really love to hear about it if someone found a solution to get more blood to the brain that wasn't lying down! Many people seem to focus on what their HR or BP is, but mine can be normal or close to normal sitting yet I am still presyncopal. I also had to give up work due to POTS. I am a GP and nobody wants a syncopal doctor! There is a wide range of severity with dysautonomia though and many people do manage to work, albeit maybe less hours or in a less physical role. I struggled on with it for 4 years working 2 days a week, but I really shouldn't have been, and feel some relief having accepted that. There are a lot of different options though for medication and it may be that you find something that stabilizes you enough to continue working. Licorice Root capsules did this for me for a while - I wasn't normal but was much more functional and my quality of life (relatively speaking) was amazing until I developed tolerance to them over time. Best wishes, B x

How about asking your doctor if you can temporarily up your midodrine? When I tried midodrine it reflexively lowered my HR dramatically (this is a normal response to increased BP). For me it was unhelpful to be bradycardic & even more vasoconstricted, but if midodrine works well for you it may be worth considering. B x

JoshMW, I'm sorry you're dealing with this. Have you been evaluated for a phaeochromocytoma? This is a catecholamine secreting tumour. This can be tested for with a 24 hour urine collection for catecholamines. These are treatable (most of us on here are disappointed to test negative!) but it is certainly worth checking if you haven't already. B x