bombsh3ll

I personally don't take medication to lower my heart rate because in my case I definitely feel it is an appropriate physiological response to low blood volume/cardiac output, and beta blockers made me feel worse. Yes the chest pain and pervasive sense of non-psychogenic anxiety were gone but I was even more presyncopal.

Hi zerohours000, I know you are worried but what you describe, the hypnagogic jerks and finger twitching can be completely benign. I have had both for many years whilst I was still living a happy and healthy life for about 14 years before my POTS onset. The latter is known as BFS or benign fasciculation syndrome. I'm not even sure these things are connected to dysautonomia, just like people can have other things like asthma, and then get dysautonomia as well. I had myself worried sick at the time re the twitching for about a year, thinking I had some kind of terminal illness like ALS that I would die from. It wasn't disabling though just a nuisance which didn't stop me from doing anything, and I wish I hadn't wasted that precious time in my youth worrying about something that was literally nothing. I hope your tests will come back clean and put your mind at rest about these two symptoms at least. B xx

I've always been slim but abruptly lost 6kg in the 3-4 weeks after my POTS onset. This did stabilize, and I regained it over the following few months with mirtazapine and also having much lower calorie expenditure due to my new chairbound life whereas I had previously been very active. I think my initial weight loss had to be fluid loss, coming off that quickly. I do still find it a chore to eat (before POTS I loved my food) due to diversion of much needed blood from my brain and presyncope related nausea. At first when reading all about dysautonomia, I had convinced myself I had gastroparesis, but fortunately this doesn't seem to be the case, it is more that being lightheaded all the time doesn't make for a good appetite. I often have smoothies and supplement shakes. B xxx

PS What did yours show, did you have reduced cerebral blood flow upright? Many thanks B xxx

Thanks Corina! I recently got an email back from them saying they do but you have to see one of their consultants first, which for me would be a costly waste of time plus necessitate two difficult round trips to London instead of one. I haven't ruled it out but have not heard good things about Prof Mathias - one lady spent nearly £400 for a 1 hour consult and he spent most of it asking about her marriage & inferring her illness was psychological in origin. It wouldn't be as bad if I could guarantee the test I want would be ordered and could be done the same day, but I would not want to risk letting him trouser £400 & not even order the TCD! B xxx

This is actually a normal phenomenon caused by vagal withdrawal when we swallow. We are probably just more aware of it due to wearing HR monitoring devices or perhaps the magnitude of the change is greater in us due to higher baseline sympathetic activity.

Thanks for your reply! So brain fog is different from lightheadedness - I guess I would have to be rid of lightheadedness to be sure, but no I don't think I identify with that, just different degrees of lightheadedness. I had a cerebral MR angiogram too in Spain, which was normal. It just looks at the structure of the vessels though, not how well the blood is flowing through them, and was done supine anyway. I was glad to get this done though. I am investigating possible places to get a transcranial doppler (sitting up) to measure cerebral blood flow.

Hi nice to see someone else in the UK (but sorry you have the same problems too!) This may sound a silly question but can you describe what you mean by brain fog? It is a term I see a lot but had not come across before I had POTS - I am a doctor and I use the terms presyncope or lightheadedness to describe what I feel - basically as if you are about to pass out, to varying degrees. Is this what people are referring to with brain fog? Sorry no I have not actually had my cerebral blood flow measured. I would really like to have this done to objectively quantify the deficit, but cannot find anywhere in the UK offering such tests. I know my brain is underperfused due to the symptom of severe lightheadedness/presyncope, which is relieved by lying down. Other causes of presyncope such as low blood sugar, low oxygen and anaemia have been excluded.

Oh you poor thing that must have been so scary! I worry about having a stroke too as my BP tends to be high & went up to 223/120 once. For the past few days since stopping the florinef mine has stayed high but I still feel rubbish. It is strange how you can have normal or high BP and still be presyncopal! You mentioned being on clonidine too which can lower BP, have you talked to your doctor about maybe reducing this now you are no longer on the Florinef? I tried clonidine too briefly, it made me even more lightheaded and my heart rate was slow. I hope you can find something that helps. B xxx

Claire how come you came off the Florinef, was it causing side effects? I have tried it several times too and couldn't tolerate it (headaches, high BP, palpitations due to potassium dropping). It also didn't help my presyncope or make me able to stand. I was only taking half a tablet and stopped it 2 days ago. Have you ever tried licorice root? I take this and the effects were miraculous for about 1 year then waned. It is a natural alternative to florinef which for me has no side effects. SSRIs can take up to 6-8 weeks at therapeutic dose to work. (side effects can occur sooner but are often short lived) I am dubious about their usefulness in dysautonomia unless to treat co-existent depression which is quite understandable, however some people do report significant benefits. B x

I am always on the lookout for new things to try, and am currently interested in Nimodipine. This is a calcium channel antagonist that works preferentially on the blood vessels in the brain to open them up and allow more blood flow. It can also lower systemic blood pressure at higher doses but the cerebral effect should be achieved at doses lower than needed to drop blood pressure significantly. My BP is the high side of normal anyway and doesn't drop, although I have severe orthostatic intolerance with POTS. There are a few reports of it being used with success in ME patients to increase cerebral blood flow, many of whom also have POTS or other form of orthostatic intolerance. It hardly seems to be mentioned at all on here and I wondered if anyone else has any thoughts or experience with it, good or bad. Poor cerebral blood flow, even when sitting (with completely normal HR and BP), is my worst symptom and it would be amazing to find something which on paper at least seems to do just that! B xxx

Hi Alystew, Everyone is so different so scaring yourself reading about the worst cases isn't helpful. My case was severe from the outset, which was very sudden. Prior to that I'd been completely healthy. From what you describe, ie your only symptom being a fast heart rate, and what I understand of the accepted medical definition of POTS, you may not even have POTS in the first place. POTS is not just a jump in heart rate of 30+ bpm on upright standing or tilt. Healthy people can have a fast heart rate when they stand and they don't even know it, they are just out there living happy functional lives. A diagnosis of POTS requires the heart rate increment AND chronic debilitating symptoms such as lightheadedness, syncope, presyncope, headache, tremulousness, non-psychogenic anxiety, weakness, nausea etc, in any combination, usually required to have been present for at least 6 months. A fast heart rate on its own with no other symptoms isn't POTS by most specialists' definition. I am not sure if maybe you do have other symptoms as generally people only check their heart rate or see a doctor, have ECGs etc if they are having symptoms, so what was it that led to you checking your heart rate? I am not saying this to minimize your problems but hopefully to reassure you that you may not even have an illness, just like every breast lump isn't cancer. Take care, B xxx

I tend to get more frequent PVCs when my potassium is on the low side, or is in range but has dropped quickly. I take licorice root and a small dose of fludrocortisone, which can both lower potassium. Supplementing potassium and magnesium helps. I am sure you have probably had your electrolytes checked but would recommend it if not. You could just try supplementing anyway, as long as you have healthy kidneys any extra will just be excreted. I take Now Foods potassium gluconate and magnesium citrate. Both taste mild enough to hide in a smoothie without noticing a taste. There are also combined supplement pills called Heart Calm that some people swear by but these are more expensive and you cannot individually tailor your dose. B x

I'm also in the UK hating the heatwave just now too! I'd have loved a summer like this before POTS I'm in Edinburgh so it's not quite as bad here, I really feel for those of you in the south of England. I just bought a water spray bottle which is good for cooling down, and have ordered some mint essential oil to add to it too. I frequently sit with a pack of frozen peas to my head/neck for the headaches too so more of that, and eating ice lollies. I am also going to look into cooling vests and towels too. B x

Hi Jimbo, Sorry you are suffering. Welcome to the forum. Something that helped me for about a year until the effects wore off was Licorice Root capsules 450mg by Swanson. 2 caps per day. It is a herbal supplement you can buy from amazon or health food outlet without prescription that helps to boost blood volume. It might just help you get by until you can see a specialist. It can interfere with tilt table testing but I see you have already had this done. Another thing which only helps me marginally but seems to help some people significantly is compression - I wear waist high class 2 compression tights by Sigvaris. Ibuprofen can also help retain fluids. Best wishes B x

Hello and welcome. I'm sorry to hear you are suffering so much, and it feels so lonely, but you are not alone and in good company here. I'm in the UK too & developed severe POTS very suddenly coming up for 4 years ago, having previously been completely healthy. I do have a family, but it is bittersweet because I wouldn't have had children if I had known I was going to become disabled and unable to care for them at such young ages. I would say definitely take up the referral to a POTS specialist, NOW before it gets taken off the cards, you know what the NHS is like! I live in Scotland so have no access to specialist care at all as there are no autonomic specialists north of the border and it is a fight to get funding to be seen in an English hospital. I traveled to Newcastle last year to get a diagnosis which was helpful in making me feel validated and vindicated after being fobbed off many times and assigned erroneous psychological diagnoses, but it has not helped me get any treatment. I am a GP myself and have been able to obtain trials of all relevant oral medication but unfortunately as yet none has helped. I do hope you manage to find some relief. It is hard to get up every day and force yourself to keep going. We are all so strong and brave to deal with this. I look back on my old life and hate how I took things like standing up or having a shower so for granted! Hugs, B x

I've had dry eyes and mouth all my life (negative blood tests and lip biopsy for Sjogren's). I developed POTS nearly 4 years ago. The dryness is just a minor nuisance compared to POTS, not really an illness. I just use eye drops and am constantly drinking anyway. A lot of people with dysautonomia have dryness but then it is also common in the healthy population too. B x

Thanks for sharing on this topic - really useful points to consider. I am also currently looking at medical alert bracelets in case I pass out somewhere unaccompanied. B x

Could you get a letter from your doctor stating your condition and that you may require oxygen in flight. If you don't already have a finger sats probe maybe buying one to take on the flight would be helpful so you can demonstrate if your sats drop. Also all the usual like plenty of fluid, salt & compression wear. You could get some electrolyte mix sachets to take through security and then mix into water bottles after that. Ask for bulkhead seats so you can put your legs up on your carry on bag if possible. Good luck with your journey.

Hello and welcome! As an alternative to Florinef, would you be able to try licorice root capsules? They work similarly and can be bought online. I get mine through a UK company but think I have seen them on Amazon. You don't need a prescription and would probably be able to get them delivered. I take 2 x 450mg of the Swanson brand per day. They totally transformed my life for a year, then the effect wore off, but that was one lovely year. B x

Sorry you couldn't take the salt pills Pistol. I tried one of my capsules the other night and it seemed fine although very fiddly to fill by hand so I am now waiting for a device that helps you fill multiple capsules at once with less mess. I just don't like the taste of salt & am not a big eater anyway due to presyncope related nausea, so ruining my food with it didn't suit me either. We do not have Gatorade here in the UK but I would love to try it! We have some nice tasting isotonic sports drinks but they actually seem to contain very little salt, and are high in sugar. I do drink a litre of oral rehydration mix before getting up which doesn't taste too bad though. B x

If the fludrocortisone is helping your symptoms but causing high BP, why not look into pairing it with an antihypertensive medication such as amlodipine? It is the volume expanding properties of fludrocortisone that have value in increasing cardiac output. I am exploring this myself. Not everyone needs or wants the increased BP via vasoconstriction that it causes, but I believe this side effect has the potential to be mitigated rather than losing a helpful med.

I am a doctor in the UK and as far as I know there are no long term wearable BP devices (unlike heart rate) as a cuff typically needs to inflate around the arm to take a reading. You can get BP monitors that go around the wrist rather than the arm that your husband could use periodically without needing to remove his clothing but these are notorious for being inaccurate (even in "normal" people and probably more so in people with dysautonomia who can have poorly perfused extremities). When I had my stand test to be diagnosed with POTS I had a Finapres finger BP reader on that was inflating and deflating constantly, in addition to the arm cuff, but I don't know how affordable or practical this would be on a day to day basis. Missy's suggestion about a heart rate device is really good if this correlation applies to your husband. I wear a garmin vivo smart watch but I find the heart rate readings quite inaccurate compared to my previous Polars with chest straps, however the latter never lasted long (1-2 months) as the strap battery couldn't be changed or recharged. If there is something with a chest strap that syncs with a watch that is rechargeable or you can replace the battery that would be best.

Thanks, I am not sure what to hope for - in a way Sjogren's would give me some treatment options, best case I might even be able to get IVIG but I don't think the NHS would fund that. B x

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