bombsh3ll

Does anyone here make their own salt capsules by filling empty gel caps? I just bought a bag of gel caps to try this as I usually mix my salt in diluting juice to drink but find the taste unpleasant. I think I would find it easier to drink more fluid if I could just have water maybe with some chopped lemon in which is nice, and get my salt in capsules which are quick to swallow and have no taste. I know you can buy salt pills but they are not easy to come by in the UK, contain very little salt and would cost a lot if used as your main or only source of salt as you would have to take so many per day. Would love to hear any advice experience or tips on this! B x

I have pretty much all the symptoms you describe, sudden onset here as well. I too feel like I am dying on an almost daily basis, but I'm still here after nearly 4 years. Things that gave me temporary relief have been licorice root capsules and diazepam. I am so glad you have good doctors. It took nearly 3 years for me to get a formal diagnosis of POTS, and I still have no treatment or specialist care (I live in Scotland, UK). I hope you manage to find something that makes life more bearable soon. B x

Thanks for all of your replies. I explained that I had POTS and SHOULD NOT be given anything with adrenaline in it. They had no clue what POTS was but made sure I got an adrenaline free LA, lidocaine. I was fine with this and had no side effects & I would recommend it for anyone with POTS or hyperadrenergic issues needing a local.

Lily would you mind sharing your recipe for this? I am yet to find the right balance of adding salt to my fluids in a way that isn't too unpleasant to drink. I too would love to be rid of the constant lightheadedness. I am also affected in all positions although standing is obviously worst, followed by sitting with legs down. My HR and BP can be entirely normal yet I remain presyncopal. I think it is more about cerebral blood flow and cardiac output than the measurable values. Licorice root helped me so much but the effect wore off over time. Next thing on my list to try is IV albumin.

Does anyone have any experience or advice regarding local anaesthetic injections with POTS? I am having a lip biopsy on Tuesday to test for Sjogren's as a cause for my POTS, which will be done with local anaesthetic. Obviously I do not want anything with adrenaline or that is adrenergically acting. I have seen a fellow EDS patient in a really bad way, whole body shaking etc for many hours after a dental local anaesthetic, and she doesn't even have POTS. I do not trust the medical team to know anything about POTS or even be bothered to look it up, so I would like to know for myself what is safe/what to avoid in terms of local anaesthesia. I would rather have it done with no anaesthetic than receive anything adrenergic. I am travelling to and from the hospital alone on the bus in my wheelchair, so cannot afford to be a mess afterwards. Any experiences much appreciated. B x

I am really sorry you are suffering like this and do hope you get some relief soon. I am glad you have good medical care and the causes of your problems are being identified. Have you had a transfusion for the blood loss? Look after yourself. B xxx

I think your neurologist's reasoning is ill informed and not based on scientific evidence, however if you have GI problems and found improvement after excluding these things, and are getting your nutrients in other ways, then I would stick with what suits you. We are all different, and whilst GI motility can certainly be affected by dysautonomia, I do not believe dysautonomia is caused by eating certain foods. I've had a lazy gut since childhood and take a daily laxative, but eat what I want. I developed POTS at 34 very suddenly and it has had no effect on my digestive system other than feeling sick when presyncopal and sick due to consuming the necessary amount of fluids.

Two 450mg capsule daily of Swanson's Licorice Root. Effects noticed within a few hours of taking - I was standing (with a grin all over my face) after 8 months of being chairbound. Definitely worth a try! I still take them now even though the effects have waned as I don't know how badly off I'd be without them.

I'm very much like you although I don't produce renin or aldosterone, so I know the reason I am hypovolaemic. Normal cortisol here too. Fludrocortisone also doesn't help me unfortunately - the vasoconstricting effects outweigh any volume enhancing effects for me too. I had life transforming benefits for about a year from licorice root, it enhances blood volume without the side effects of Fludorocortisone. You might want to look into it as an alternative option. It can be bought online or from a herbal store. The effects wore off after about a year as I think my body adapted to it and probably just started to produce more of the enzyme it suppresses, but that was one fantastic year.

Yes, I love diazepam, it is very helpful for the symptoms of sympathetic excess in POTS. You are very lucky to have such a compassionate doctor who isn't afraid to prescribe a very unfairly stigmatized drug. Do you really think you have an anxiety disorder or could it have been misidentification of earlier POTS symptoms?

I am not necessarily sure it would affect POTS one way or the other and a trial wouldn't do any harm, you could always take it off. The main thoracic vessels are very deep so I cannot see them being compressed any by an external binder.

In my experience magnesium is a decent laxative but doesn't have any other benefits.

This sounds ridiculous but it was a very forceful valsalva that triggered my POTS. I have two children & one day my dad came in with one balloon. I knew they wouldn't share so went and got what I thought was another balloon from the drawer and tried to blow it up. I blew SO HARD as my kids were screaming and fighting, I just wanted a balloon for each of them to keep the peace. Blowing so hard I passed out. At first I wasn't too worried, it is common for people to faint after straining hard. I lay on the floor, waiting to come around properly and the lightheadedness to go. It didn't so we called an ambulance. It never has gone away, and I haven't been able to stand for more than a couple of minutes since. It was 5pm on Monday, 4th August 2014. I remember the time on the oven clock as I lay on the floor. My life was taken away from me that day. It turned out what I thought was a balloon was actually a water bomb and I would never have been able to blow it up. I was a completely healthy 34 year old before that day. How I wish I hadn't tried to blow that thing up. I will never know if I would have developed POTS gradually or some other way had that not happened, but that's my story. I found POTS googling my symptoms in the few days after becoming unwell. My HR did the same thing standing. It took me 3.5 years after that to get a formal diagnosis though, and after that I saw a genetecist as I and other family members have some features of HEDS, so that was where I got that diagnosis. The musculoskeletal and previous surgical complications of HEDS are trivial for me though and I would never have sought a diagnosis of this if I didn't have POTS. I mostly pursued the EDS diagnosis in order to support my disability claim as POTS in this context doesn't go away, and although deep down I do not believe my POTS is secondary to this, it means I am recognized as having a permanent condition rather than something that might go away which is what people can be told if they have no other diagnosis, even though the evidence for it going away is scant.

No, it is your doctor that ought to read more! I wouldn't waste any more time or money on him.

I have read papers reporting successful use of clonidine, nitroglycerine and hydralazine for this indication. I think the first two are available in patch form as well as pills. There may be other options too so I would speak to your doctor. Also a bedtime snack can help in lowering blood pressure via postprandial hypotension.

I had twitching all over for 14 years before I got POTS & I still do. It is called benign fasciculation syndrome. The clue is in the name, benign. It's nothing to worry about. Of course it was very distressing when it first started and for a couple of years I was convinced I had something horrible. In those days I didn't know anything as truly miserable and life-stealing as POTS existed and I wish I hadn't spent precious time worrying and not enjoying myself when I was healthy.

I think adolescents who develop it during a growth spurt do tend to get better, but can't see myself "growing out" of it given I developed it at 34. In real life from what I have read and learned I don't think it is common for adults to recover fully, although if a successful treatment combination is found I believe quality of life can be improved. I think a lot depends on underlying pathology. People whose main problem tends to be low blood pressure may find they improve with age though as blood pressure tends to rise with age. I have a diagnosis of HEDS but I would never have been diagnosed with this if not for POTS as for me the musculoskeletal and surgical complications are mild and by no means disabling, and I don't personally believe in my case EDS is the cause as poor collagen is congenital yet I developed POTS extremely suddenly. I believe my cause is volume depletion of endocrine origin as I produce no renin, aldosterone or ADH.

In a word, no. The belief that clear urine = adequate hydration assumes appropriate production of fluid retaining hormones like ADH and aldosterone. A healthy person who was dehydrated would automatically concentrate their urine, but someone in whom one or both of these hormones is deficient cannot do so effectively.

I second that. I produce neither renin nor aldosterone, and tend to have high diastolics. I think the RAAS can malfunction in a number of different ways though, as losartan didn't help me although I've never had angiotensin tested. Beta blockers suppress renin production, and they also cause vasoconstriction by unopposed alpha receptor activation, but I would not imagine these effects persist for very long after you stop taking them. Having previously used a HR watch with a chest strap, I take extremes of high/low pulse from my current wrist HR monitor with a pinch of salt. Mine too will occasionally read very low - not all beats are always detectable at the wrist particularly in volume deplete individuals with low pulse pressure and/or poor cardiac output. Conversely when I use my seated indoor pedaller for exercise, I can have a HR in the 80-90s but my wrist monitor can read up to 180's!

I have low blood volume rather than low blood pressure, and I chug buckets of salt and water in the hope of increasing my blood volume however it doesn't seem to help. It doesn't increase my blood pressure though. When I feel worst, my blood pressure seems to be highest due to compensatory vasoconstriction, and when my volume is increased eg in the evening after exercising, and I feel my best, my BP is lower. I therefore don't think there is a straightforward relationship between increased salt = higher BP, but that increasing blood volume can stabilise BP. My understanding of midodrine, which didn't suit me personally (scarily high BP and still presyncopal) as hypovolaemic patients need volume not vasoconstrictors, is that its short acting nature should mean it is out of your system by bedtime as long as it isn't taken too late in the day so shouldn't be contributing to nocturnal hypertension if you only use it when you intend to be upright. Did it help you stand, that is the key question? Have you tried raising the head of your bed at night? I do this in the hope of increasing my volume, but I understand it also helps reduce BP in those with supine hypertension. Also there are a lot of other short acting drug options for reducing the supine hypertension if valsartan isn't effective.

I did try this and whilst I can see how cognitive based measures may help for people with some of the conditions mentioned such as anxiety or phobias around certain foods or electronic devices, it cannot help with an organic illness like dysautonomia. They supposedly offer a refund after 6 months if you are not satisfied, so in another month I can hopefully get my money back. Whether this actually proves to be the case or is difficult I do not yet know. There is kind of a culture that if you don't improve it is your own fault, which I also dislike. I would save your money, try to be as positive in your outlook as possible, pray if you believe in God, exercise if you can, eat as well as you can and you will basically have saved yourself nearly 300 pounds/dollars. I believe the people in the testimonials who claim to have recovered from POTS probably had it due to being malnourished and/or deconditioned due to other "illnesses" that are not real illnesses, and once they started eating and moving around more, their "POTS" went away.

Blimey that looks like a nasty ventricular tachycardia! As I understand it, and I'm no cardiologist, beta blockers work on the sinoatrial node which controls HR when a person is in a normal or at least atrially generated rhythm. What was your underlying diagnosis?

Ah I understand your concern about vasoconstrictors. Beta blockers can raise the blood pressure through unopposed alpha adrenergic stimulation, but I am not sure why this would have persisted after stopping them. I too tend towards higher BP, & believe in my case it is as a result of intense sympathetically mediated vasoconstriction secondary to hypovolaemia, so that category of meds is out for me too. I wouldn't touch a beta blocker myself as they reduce cardiac output and cerebral blood flow, although I know some patients with POTS do find them helpful. What was it that led to you being prescribed the beta blocker in the first place? B x

I have come across a number of studies where glycerol taken orally in varying amounts of water has shown success in temporarily expanding the plasma volume. Athletes were using this some years ago, both to benefit from the volume expansion alone, and also sometimes to mask the effect of doping drugs like epo. It was ultimately banned by WADA due to providing unfair competitive advantages. There even used to be a sports drink which made use of this effect called something like Heat Endurance, but it stopped being produced after glycerol was banned from competitive sports. I am planning to try adding some glycerol to my salt and fluids to see if I can achieve the same effect, and wondered if anyone else had tried this? B x

Hi Peter, I worry too about the long term effects of chronic cerebral hypoperfusion - it can't be good! However as a doctor myself I would add that although there is an association between OH and dementia, it does not prove a) that one causes or leads to the other or b.) the direction of causality. For example some degenerative diseases seen in elderly people have both cognitive decline and OH as features. It sounds as if your problem stemmed from an event that you can identify, that is not related to degenerative disease or dementia. Also on the plus side for you, if your blood pressure drops when you stand up there are a number of effective treatments available for this aimed at raising BP. Have you tried any vasoconstricting meds yet? B x