bombsh3ll

It is safe to take long term if you are being properly monitored. The prescribing doctor should have made arrangements for you to have a follow up blood test. Assuming your baseline sodium was normal, and you are only taking it at night, a week from the date you started should be reasonable. If you are taking it in the daytime or in larger doses >0.1mg you really should be checked after 2-3 days as hyponatraemia can develop very rapidly, particularly in patients who drink large amounts of fluid as we do. B xxx

Hi, I am so glad you are getting somewhere and that it may lead to some relief. Can I ask what surgery is proposed specifically if you know that yet? I recently had a supine MRI with contrast to look for CSF leak due to my orthostatic headaches, which showed no sign of a leak. I have had a consultation with a neurosurgeon (Dr Gilete in Barcelona) who felt I had cranial settling based on upright scans and discussed C0-2 fusion. It is very expensive surgery and not without risks, so I am sending my scans for a second opinion from a neurosurgeon in the US. There is a very encouraging account by a guy called Jeff at MEchanical basis - he had severe POTS, bedridden, and completely recovered after C0-2 fusion, so it is very exciting. He actually inspired me to pursue that direction, although I am as yet not totally convinced it is my issue. I wish you the best of luck with your upcoming procedures, please keep us updated. B xxx

If there was a clear link between using this product and fainting, then I would not use it again and seek an alternative treatment for your symptoms. Hormones certainly can affect dysautonomia, and estrogen is indeed a known vasodilator. This effect would not be common or expected from a vaginal preparation in a healthy person, but responses are very individual and can be even more unpredictable in someone with a fainting tendency to begin with. B xxx

If it is any help to you, I know of a lot of patients presenting with the symptoms you are describing, and (after exclusion of serious cardiac/respiratory conditions) were concluded to have reflux as the cause. It was not at all uncommon to see people discharged from respiratory and ENT clinics with acid suppressing medication and an otherwise clean bill. Now I have had acid reflux my entire life - I remember eating toothpaste at the age of about 7 because we had learned about acids and alkaline at school and I thought it would help (it didn't- made me sick), and taking my dad's Rennies. When I grew up and learned there was a treatment for it, I started to take omeprazole and haven't had it since (unless I miss a dose, then boy do I know about it.) In my own personal experience, acid reflux doesn't at all feel like what you, or many other people, described, nor could I ever confuse it with the cardiac chest pain I get from POTS. I also often doubted the specialists' conclusion that all these people probably had reflux. What I do know however was that some people, but by no means all, got better with acid suppressing medication (proton pump inhibitors) like omeprazole. I know that this is often used as a first-line treatment with patients with non-sinister chest discomfort and/or cough, before referring them to respiratory, so that either it worked or at least they wouldn't be fobbed off as they had already tried it, and many times it did work. The fact it also worsens lying flat is also a characteristic of reflux. It is very simple to get a good idea of whether reflux is your issue or not - have you been given a prescription of omeprazole or similar? If you have, in my opinion it generally takes 6-8 weeks of taking this (but often sooner if it works) should help either rule this in or out. B xxx

That's what I think too - it goes away pretty quickly for a healthy person after bedrest, whereas it persists in us when for the most part we were fit and active at onset. B xxx

Please do keep us updated! Carcinoid is one of the things I have not yet excluded so I am also very interested in the connection. I plan to keep searching until I have exhausted every possible known cause myself, but am prioritizing tests by availability, probability of being "it" and cost. I cannot get the 24 hour urine test as I would have to travel to London and stay in a hotel overnight, but I can get a Chromogranin A&B blood test close to home. I don't seem to have flushing episodes & don't have diarrhoea though. Best of luck with your tests. B xxx

I always said no amount of money would persuade me to go into space, but now I think I might be better suited to life on a space station where there everyone floats around with no gravity. I wouldn't be able to come back though, and the amount a POTS person pees might be an issue in a spacesuit B xxx

I think continuing to seek an underlying cause is important for everyone, regardless of your demographic. I will never give up looking. Although the UK is pretty backward in terms of dysautonomia research, exciting studies are going on around the world looking at autoimmunity etc. I expect there will be new advances in years to come. I am currently being investigated for a CSF leak and craniocervical instability, both of which can cause POTS and are potentially treatable. Unfortunately as with most illnesses, from what I know, women tend to be investigated less & diagnosed later than men due to subconscious gender bias & incorrect attribution of physical symptoms to anxiety/depression. A previously healthy woman suddenly becoming unable to live a normal life, work etc can all too often be regarded as being less important than a male the same age suddenly becoming incapacitated. I am aware of this from my previous medical career, and have also now lived it as a patient. This may in part contribute to the higher rates of underlying diagnoses identified in males - simply because they are looked for. B xxx

Megan, I know this is really hard right now, but it is good that you have a doctor who is willing to dig, & I actually do hope they find something that can be treated for you. If it is any comfort, I as a doctor would choose carcinoid above POTS-with-no-known-cause-or-treatment hands down. There are people living well for decades with carcinoid, & it tends to be very amenable to treatment even if it cannot be fully eradicated. I wish you the best of luck with your tests, & I hope you do have some ativan or similar on hand, there is no shame in it when going through this. B xxx

I didn't know there was another Dr Levine interested in POTS! I would really like to hear how you get on with him and what he has to offer. Sorry I am laughing at the image of low hanging fruit - it is the only kind I'd be able to pick, or even the rotten ones that had already fallen. I would love one day to be able to get to the good stuff at the top of the tree again 😊 B xxx

Dr Benjamin Levine who coined the "grinch syndrome" theory. The thing with astronauts is they do have a POTS like presentation when they first return from space, but they spontaneously recover, they are not stuck with it like people who get it on earth and were not gravitationally deconditioned, at least not to begin with. If someone can recover orthostatically after 27 years of bedrest, this would imply deconditioning is not a cause of permanent orthostatic disability. B xxx

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

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

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

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

Bumping - not got many results... any other florinef takers?

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

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

I tried it and it was nothing more than a very expensive laxative. Please do not waste your money. B xxx

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

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

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

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

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

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