bombsh3ll

Thanks vxmike that is really encouraging that you've had a good response, and also good to know Dr Grubb's opinion on it. I haven't ruled it out entirely but do want to address volume issues first - I have a blood volume test scheduled in 2 weeks. I also do not feel I have pooling as such, just general hypovolaemia secondary to not producing renin or aldosterone. My resting HR is also not high which is a concern for me re this drug - I found some studies in which a resting HR of below 60 or even 70 precluded use of the drug (granted these were for other conditions not POTS) but I would be a bit worried about my resting HR dropping too low, particularly whilst asleep. Has this been an issue for anyone or has your doctor said anything about this?

Did you stop your beta blocker in preparation for the test? If not this could have skewed the results and masked the POTS response if you do have it.

I have POTS with severe orthostatic intolerance and presyncope/lightheadedness all the time. I can only stand for a couple of minutes, this improves in the late evening after I have been drinking water and salt all day. I can also be sitting with perfectly normal BP and pulse but feel awful. The amount of urine I pass in 24 hours, and the fact that licorice root helped me so much initially, plus I feel best at the end of the day when my blood volume must be highest, all point me towards thinking my problem is chronic hypovolaemia. My symptoms are basically those of stage 1 or 2 hypovolaemic shock. I also lost 6kg in the first few weeks I became ill, which had to be fluid weight. I don't have any other autonomic symptoms other than those causing poor cerebral perfusion. I've always taken medication for acid reflux and constipation all my adult life, which hasn't changed. It may in theory be possible to take both fludrocortisone and desmopressin with careful monitoring. Do you have regular blood tests for electrolytes?

Did you increase gradually up to you current dose or just start it all at once? It may be that your best dose is a bit lower. Where is the weight gain, is it around your ankles or all over? Do you think it is fluid retention or has your appetite increased? If I gain weight when I restart it I will take that as a good sign that I am retaining fluids rather than just getting the unwanted increased adrenaline & vasoconstrictive effects that I previously experienced at low doses without any sign it had helped me retain any fluid. Has fludrocortisone helped you be more upright/functionall overall?

Hi I have also tried desmopressin (alongside the licorice), which stopped me having to pee during the night but sadly didn't help me stand any. When I started the licorice root, the effects were quick and dramatic, but waned over time. I definitely believe reduced blood volume and inability to hold fluids is my issue. I did a urine collection to exclude a pheochromocytoma, and one 24 hour container which holds a max of 5 litres wasn't enough. This led to the discovery that I pee around 6 litres per day - upper limit of normal being 3 litres. I had a hypertonic saline test for diabetes insipidus which I have to repeat as it was inconclusive - not fun! I actually hope I am not diagnosed with DI because I already know the treatment for that which is desmopressin doesn't help my POTS, and want to pursue the fludrocortisone avenue as my renin and aldosterone are barely detectable. I don't really get muscle weakness (other than being generally deconditioned secondary to POTS) or cramping so can't answer that. Are you diagnosed with DI or did you just try the desmopressin to see if it helped - and does it help OI for you?

That's the opposite of what I have - I have headaches upright that are relieved by lying down! I attribute this to cerebral hypoperfusion. Headaches that are worse lying down and improve when upright can sometimes indicate raised intracranial pressure. As you are on desmopressin this is worth discussing with your doctor.

Hi I have been taking licorice root capsules 2x450mg daily for two and a half years. They worked wonders at first but lost effectiveness at about 1 year. I produce next to no renin or aldosterone, and after I have a blood volume test in January I plan to transition to florinef Has anyone else moved from licorice root to florinef? If you initially responded well to licorice root, did the florinef also help, and does florinef also soon lose its effectiveness after a while or does it keep working in the long term? Also what dose of licorice root did you move from and to what dose of florinef? Did you transition gradually or just change straight away? I would be really interested to hear anyone's experiences who has gone from one to the other. B x

Are you in the UK Anya? If the wait to see a specialist is so long (I waited 3 years but most of that was fighting for the referral to someone who had heard of POTS), perhaps you could get a prescription for a beta blocker just to try in the meantime from your GP. They didn't work for me, but can be helpful for some, especially if the main symptom is pounding/racing heart rather than lightheadedness/syncope.

Beta blockers made me worse, which makes sense as they reduce cardiac output & cerebral blood flow. Once I get my blood volume sorted out, I may consider ivabradine if still symptomatic, but what worries me about that is it is contraindicated in resting bradycardia - my resting HR can be in the 50's. That is awake, probably goes lower when I sleep. Ironically exercise lowers the resting HR, and mine did seem to reduce after I started using the recumbent bike! I recently saw a good cardiologist & we discussed ivabradine, but he took my point when I asked if he were in a car accident on the way home and lost a significant amount of blood, would he prefer a medication to suppress the compensatory tachycardia, or replacement of the lost volume. Of course that may not be the full issue for me, & not even the issue at all for other patients - not all with POTS even have low blood volume - but I fit the clinical picture of hypovolaemic shock to a tee. I hate how many doctors have forgotten from the physiology lectures in medical school that in the initial stages of shock BP can be normal/high as the SNS goes into overdrive. Kim, I am guessing the drug your doctor meant was some form of injectable erythropoeisis stimulating agent like procrit or similar. How long ago was that? There are newer alternatives out there now such as Mircera which is longer acting, & the price of some of them may have significantly come down now there is more competition. If you were paying out of pocket there are also reputable pharmacies in other countries which may be cheaper and will take your prescription and ship your medicine. I also looked at these, but I would need to know I had adequate plasma before increasing RBCs - otherwise too many RBCs and not enough plasma = blood like treacle which has killed a number of cheating cyclists - and they were healthy to begin with! I think increasing plasma volume may be all I need to do even if mildly anaemic, given how much better I feel in the late evening. Plasma volume is highest in the evening, but RBCs take much more than a day to change significantly.

For me, I think fatigue and exercise intolerance relate to both the position of the exercise, and deconditioning secondary to having POTS. I can ride for half an hour on my recumbent bike at resistance level 7 (when I first bought it I used to pedal at level 4), and my arms are also becoming stronger as I use a self-propelled wheelchair. I can only walk for a few minutes and am in real difficulty though, and if I carry a bag up a flight of stairs I am close to cardiac arrest! Although I can exercise on my recumbent bike, I feel I am generally weak and deconditioned compared to my previous healthy self 3.5 years ago, or even compared to the average sedentary person, as I spend about 23.45 hours per day sitting or lying. A person who is able to stand without presyncope does small things all the time that they don't even count as exercise, around the house, going out etc that maintains a certain level of fitness that cannot be maintained when chair bound. I too am not concerned about "tachycardia" as a symptom - my heart rate would never have been measured by me or anyone else if I had an adequately perfused brain. I believe I am tachycardic on standing due to volume depletion. I have a blood volume test arranged in a nuclear medicine dept in January.

I actually felt more non-psychogenically anxious and full of adrenaline whilst on fludrocortisone, but will soon be going back on it as I feel I really need the volume boost. This time, I will be trying to mitigate the side effects with losartan - a vasodilator (note this is the opposite of what midodrine does, which is a vasoconstrictor), diazepam and pain relief for the headaches. Losartan has some effect on dampening down the actions of noradrenaline. Obviously as a vasodilator which can potentially lower BP, it will not be suitable for all with POTS, but there have been a few small positive studies with it in "low flow POTS" which is the description that best fits me. I didn't respond well to midodrine - v high BP, low HR and still presyncopal, but many other people have had great success with it. 2.5mg is a very low dose, maybe you just need a bit more. Your blood pressure might provide some clues as to what to try - does it tend to run low, normal or high? I hope you find something to take the edge off & would love to know what it is if you do!

Out of the non-invasive methods I would imagine the ear device to be the most accurate, however in people with dysautonomia who have reduced blood flow to the head when upright, it may still give falsely low readings for blood O2 unless you are lying down.

Beta blockers reduce cardiac output and cerebral blood flow, exactly the opposite of what we want. They absolutely do bring the heart rate down but the cost of that was too high for me in terms of worsened syncope. Some people tolerate them better than others depending on their particular type of POTS. I feel my tachycardia is compensatory for hypovolaemia and that suppressing it is the wrong path to take. I asked my cardiologist last week, if he were in a car accident on the way home and lost 20% of his blood volume, causing a compensatory sympathoadrenergic response with tachycardia and vasoconstriction, would he want medication to slow his heart down or to have the lost blood volume replaced? He took my point.

Poor circulation to the extremities can make pulse oximeter readings look falsely low in volume deplete patients as we are peripherally shut down. Unless we have separate issues with the lungs/breathing, our blood is generally well oxygenated, there just isn't enough of it and/or it is not getting where it needs to go. The furthest parts from the heart ie hands, feet and brain fare the worst.

Thank you Peter for speaking up not just for yourself but for all of us suffering with poorly understood and difficult to treat conditions, and the way in which we are treated (or rather not treated) by the NHS. How did your meeting with the MP go?

Mine can go up too but not always. POTS criteria doesn't include a drop in BP. I would take your results to a doctor knowledgeable in POTS, or at least take the official POTS diagnostic criteria to your current doctor. At the end of the day though symptoms matter more than numbers/labels and warrant treatment. I wouldn't care what my heart rate was if I wasn't presyncopal all the time.

I only have baths, so I can sit or lie. Perhaps you could try sitting on the floor in the shower and tippng your head forward so your arms aren't so high, although then lifting your head back up can be difficult. I wear a lot of hats!

Sorry you're going through this. I don't know about the medical system in India, but in the UK I have the impression specialists don't actually want to diagnose POTS because then they'd have to treat you. I too was passed around various specialties who did just enough tests to triumphantly declare I didn't fall within their specialty, then discharge me with no help or treatment. I recently paid to see a private cardiologist who is prepared to work with me and try different treatments (including IV fluids!) once I have had a blood volume test and repeated an inconclusive test for diabetes insipidus. When I said to him he was only the second doctor (including the specialist who diagnosed me) that I had met who had heard of POTS, he said that his fellow cardiologists in the NHS did know about the condition but had no interest in treating it. They find ablations and cardiac catheterisations etc much more satisfying. I think it is very sad that they don't consider someone young and severely disabled worth treating. I would say keep pursuing a tilt table (or a stand test) to get a diagnosis. I have found that although I still have no treatment, I am no longer fobbed off as much or treated like a neurotic hypochondriac now I have a formal diagnosis.

Hi I m not sure which country you are in but in the UK those values are within normal ranges. I am a GP and our normal range for sodium is 135-145 meq/L, potassium 3.5-5.5meq/L and chloride 96-106 meq/L. Are these values after treatment?

My symptoms fit yours and I have a diagnosis of POTS by one of the few POTS experts & researchers in the UK. My heart doesn't race at rest though. When I first became unwell I had electrolyte disturbance too - low sodium and high potassium. At the time this was attributed to having been started on an SSRI antidepressant (GP thought anxiety, I was sure POTS but took them due to evidence showing benefit in some with POTS, sadly not me), but I was later found to be producing virtually no aldosterone. This is the hormone that keeps salt (and water) in the body and lowers potassium, hence the electrolyte imbalance and low blood volume. In which direction were your sodium and potassium numbers off? Maybe look into seeing an endocrinologist and getting your adrenals tested (including aldosterone). I have normal cortisol BTW so not Addisons.

I started taking licorice root capsules 2 and a half years ago to boost blood volume for POTS. (Swanson brand, 2x 450mg per day). They basically work like florinef in the kidneys, retaining salt and fluid but without the side effects of headaches, anxiety or increased vasoconstriction. Note they can also reduce potassium levels though. The initial effect was like a miracle, not a cure but life changing. The benefits lasted about a year before wearing off. Either my condition progressed or my body developed tolerance to the effects. If you have POTS, particularly hypovolaemic type, and want a much better quality of life even if temporary I would highly recommend them. If they help you like they helped me, you will not need or want antidepressants for the time they work. Check blood pressure and electrolytes periodically, and interactions with any other meds you may be taking.

If you feel your current treatment is helpful and needed I would be completely frank with your doctor and let him know your concerns about coming off them. Certainly if something got me up to 7/10 I wouldn't be willing to give it up! I am planning another trial of florinef in the new year, have you had any side effects?

I have daily headaches too which I believe are due to the poor cerebral blood flow caused by POTS. Although I have some features of EDS and am waiting to see a geneticist, I have had both lying and sitting MRIs of my brain and neck, in flexion, extension and neutral positions which have ruled out a Chiari or craniocervical instability. I am in the UK too and unfortunately had to pay privately for the upright brain and neck ones. It was worth it to exclude these conditions. Has your daughter had an MRI at all.? I saw Professor Newton who said headaches are common in POTS due to low blood flow and should improve if the POTS is optimally treated. Unfortunately mine isn't as yet, but it does seem that POTS alone can cause this without necessarily another underlying problem although it is still good to rule things out if you can. My headaches come on when I am sitting upright, worse when standing although I cannot stand for very long, and go away when I lie down or recline. This is generally the opposite of what you would get with raised intracranial pressure.

That is awful and they don't sound like true friends at all. I don't know how old you and your friends are, maybe they are young and immature and panicked when they saw you pass out, but there really is no excuse. I don't usually go out alone and usually get enough warning if I am about to pass out that I can get myself down in a safe position. Unless these people genuinely feel bad now and are willing to become more understanding and compassionate about your condition I would no longer consider them friends. If you are prone to regular faints a medic alert bracelet may be helpful, there are also more technical devices that could send an alert to a family member. If you are in a public place, generally strangers will quickly come over to help if they see someone unconscious. I also always have my folding stool with me if not in my wheelchair so I am never stuck without a seat. It wasn't expensive and really helps.

Glad your POTS is acting up when needed! Is there a button to press when you have symptoms? I did a 24 hour ECG and was supposed to indicate when I felt presyncopal & lightheaded - er, all the time!! Nobody should need to pay extra NI - I am a GP and there is so much WASTE in the NHS it is shocking!