bombsh3ll

Yes I am pretty sure it is the TOP end of the bed for autonomic disorders - it is meant to be for longer term volume expansion rather than short term comfort & cerebral perfusion. B x

Hi and welcome! I can relate to what you're feeling, my situation isn't quite the same as I have a husband and kids, also my dad stays with us a lot to help out, but my biggest (probably irrational) fear is that my kids (9 & 5) will find me dead & be terrorized, say when my husband has left early for work and my dad isn't here. I always sleep easier when I know there is going to be another adult there in the morning. I know POTS isn't supposed to be fatal, but having next to no blood flow to your brain, plus all the red flag symptoms you are supposed to seek emergency care with ALL THE TIME eg chest pain, shortness of breath, passing out etc can certainly feel like it! How would you know if you ever did have a real emergency when you feel like that constantly?! I like the idea of a wearable alarm, although you would have to be conscious to activate that, also a roommate or a service animal are good suggestions. If your building permits animals, I suppose even an ordinary dog as opposed to a trained service dog would help, as it would surely start making a lot of noise if it wasn't being fed or let out. You could also make an arrangement for a family member to call you at a certain time, once or twice each day, with the understanding you have a phone on you all the time, so they could raise the alarm if you weren't answering. I hope you manage to find something that gives you some peace of mind. B x

I recently had to put together a collection of my medical info for disability, and I was reading over my hospital letters, did a bit of thinking and online reading and came across a very interesting presentation by Dr Ian Carroll who spoke at the dysautonomia international conference on CSF leaks. I have EDS (only diagnosed after POTS, lifelong weak collagen/weird surgical issues but nothing disabling so wouldn't have seen geneticist otherwise), and was COMPLETELY well until a very forceful Valsalva (blowing up a water bomb I thought was a balloon) at which point life as I knew it ended instantly, and I could no longer stand or walk without passing out. Along with this came severe nausea and a splitting headache and neck pain whenever I was upright, yet lie me down and my old personality, IQ & light behind my eyes are back within minutes. Like everyone on here, I would so love to find a treatable cause for my POTS. I was tested for Sjogrens due to dry eyes and mouth but my lip biopsy was normal. I have seen 2 neurologists and a neurosurgeon and repeatedly expressed concern that the Valsalva could have caused HIGH intracranial pressure, but none of them (nor I to be fair - I am a GP) ever considered the opposite possibility, that I could have triggered a CSF leak with LOW intracranial pressure. Dr Carroll's talk went into detail about a number of POTS patients actually having this, especially people with connective tissue disorders like EDS. I know that EDS is associated with OI generally, attributed to lax vessels that don't constrict, but surely that would come on gradually, not instantaneously with one event that is a recognized trigger for spontaneous CSF leaks. There is another video on Youtube by a young lady called Kristin Ann who had POTS and turned out to have a leak and was fixed by this guy. Her symptoms sound like me to a T. None of the standard POTS medications have helped me either. I know this is probably clutching at straws, but has anyone else here had, considered or been tested/treated for a CSF leak? I would love to hear your experiences if you have or know somebody that has. B x

Hello and welcome Dogmom, sorry you are suffering but you have come to the right place to get support and feel a little less alone. I am 38 and have had severe orthostatic intolerance since 34. I fainted a handful of times when I was younger but was well in between. My diagnosis is POTS. I've never really found any medication with lasting positive effects. The heart stopping and BP plummeting are quite typical with neurocardiogenic syncope, & unfortunately pacemakers have not shown to be terribly effective in preventing fainting in younger, otherwise healthy people with NCS, but it is good that you have had a work up by a cardiologist. Do you have a BP cuff or a heart rate monitor/watch at home that you could use to check your numbers when you feel presyncopal? That would help provide information for your doctor which could guide treatment. Frustratingly when I am sitting, my heart rate and blood pressure are usually perfectly normal, but I still feel extremely lightheaded and miserable. I hope you manage to get ongoing medical care sorted out soon. B x

Hi I'm sorry you're having difficulties getting your much needed med, I know how I would've felt when licorice root was still effective for me if I hadn't been able to get it! A couple of possible (hopefully temporary) alternatives that you could ask your doctor about are guanfacine or clonidine. Another possible option is to look at overseas pharmacies that you could send your prescription to - the supply problems may not affect all countries. Good luck, I hope you manage to get it sorted! B x

I actually removed half the blocks last night, taking the top end of my bed down from about 30cm to 15cm, and had the most comfortable night in a long time. No sliding down or waking multiple times to crawl back up the bed again! I didn't wake up to pee any earlier either, & my orthostatic intolerance, which is severe regardless of what I do, wasn't any worse, so I think I will leave it at the current level. B x

Hi I wanted to get people's opinions on raising the head of your bed. This is commonly suggested as a means of increasing plasma volume/reducing nocturnal urine volume, but there is no actual evidence that it works as far as I can see. The only studies I can find that mention this have applied it in combination with other measures, one with fludrocortisone and Levine's exercise studies. I have had the head of my bed raised on blocks since pretty early on after developing POTS, and cannot say it has made any positive difference other than I am less comfortable, don't sleep well and often wake with symptoms associated with being "upright". It concerns me that my brain is possibly needlessly going without its full potential blood flow at night, as well as obviously during the day which can't be helped. I understand that this measure could have a role in people with supine hypertension, but I am not in that subgroup. I am also currently looking into getting evaluated for a possible CSF leak as I have EDS and all my symptoms were triggered abruptly by a very forceful Valsalva. If this is the case, then lying flat would obviously be preferable. Please chime in with any thoughts and experiences! I think I am going to ask my husband to remove my blocks this weekend. B x

What I used to ask patients to do when describing palpitations was to tap out the rhythm on the desk with their fingers. That way you could often tell if it was regular but fast, completely irregular or generally regular with a few extra single or multiple beats here and there, or regular with missed beats. Of course, this is not an accurate means of diagnosing anything and doesn't replace tests like an ECG, but it helps to get an idea of what someone means. Personally when describing my own symptoms, I use the term tachycardia for a rapid heart rate (ie a person with POTS standing up), and palpitations when there are extra or irregular beats (irrespective of baseline rate). B x

I have that all the time too, it makes life pretty miserable and I wish we could come up with something to get rid of it! B x

It is likely that the volume expansion from the plasma transfusion has stabilised your sympathetic nervous system so you aren't getting the excessive vasoconstriction as your body desperately tries to compensate for hypovolaemia. High BP can be a sign of low blood volume. I experience this myself and am clinically very volume deplete. I personally would give anything, gallbladder (or even eyes or all 4 limbs) for 6 pints of plasma! The effects may or may not continue, as I think even when we get topped up our dysfunctional bodies seek to revert back to their normal volume deplete state, so I would say enjoy it, be as active as you can as this in itself promotes volume expansion and may prolong the effect. You are in no way a hypochondriac for checking your vitals, any more than you are for checking your sugars on insulin. Best wishes with your recovery from surgery. B x

Do you feel then that your POTS is better overall without the pill? I am not bothered about heavy or painful bleeding per se - piece of cake compared to living with this 😉 - but I wouldn't want the blood loss or the hormonal fluctuations to worsen my already severe OI. Interesting that you developed it during pregnancy - a time of no menstrual cycles - and then still felt bad with the pill which effectively "mimics" the pregnant state. I never had POTS during my pregnancies and was on the pill right up until starting IVF drugs (tubal infertility) then right back on it after giving birth, so I've not actually had a natural menstrual cycle in about 10 years. I developed POTS when my daughter (last child) was 14 months. I do recall though that I had quite a long cycle (could be 5-6 weeks) so best case scenario I might get a few decent weeks for each bad week, I'm just scared to take the plunge. It is great to hear of someone feeling better off hormonal birth control as most experiences seem to be the other way round. B x

Another bust so far, but I bought a pack of 60 so will keep taking them until they run out. It was worth a try given the low price tag! B x

I've wondered this myself and would love to hear people's experiences. I'm sterile anyway and far too unwell for intimacy so the birth control aspect is irrelevant to me but I've been on it since long before POTS in order to avoid periods. I used to take the combined pill continuously, but switched to the nuvaring continuously (no difference, better or worse). I have wondered about coming off this but did used to have heavy periods years ago (was completely well with it, nothing more than a nuisance in those days), but have heard many with POTS say their cycle worsens things and go on birth control to help their POTS. Sorry if this is too personal but have you had a period yet since coming off it and if so how was that? PS forgot to add my resting HR tends to be low normal and my main issue is symptoms (presyncope, orthostatic intolerance) rather than HR numbers. B x

I know how awful you feel because I have similar symptoms - but with normal/highish BP. It may actually be in your favour that your BP is low because you have something that can be treated, and even if higher or more frequent doses of midodrine don't do the trick, there are a number of other drugs that can be used either alone or in combination to raise low BP so please don't give up! I have actually wished at times that my BP was low so that I had an angle from which to attack my symptoms! Low BP meds have never helped me, although they do help some with POTS but normal BP. I have read many POTS forum posts & never come across anyone with very low BP & felt bad with it, who didn't report feeling much better once they got it raised. Good luck, I think you have every reason to feel hopeful! B x

That's really kind thanks I will do if I don't get anywhere with Dr Grubb! I agree. Whilst provigil may be appropriate for some indications such as narcolepsy or general fatigue, there isn't a single published scientific study showing it to have any benefit in orthostatic disorders. B x

Hi and welcome! I am sorry your daughter is suffering. Unfortunately my experience with Florinef wasn't good - even though I produce no natural aldosterone, the hormone it is meant to replace. It did nothing for my lightheadedness/presyncope or inability to stand, and it also gave me severe pressure type headaches. Many people have had fantastic things to say about it though so please do not be put off by my experience as we are all different. I would suggest starting on a very small dose, perhaps only quarter of a tablet, and slowly building up to the full prescribed dose. If headaches occur or worsen, call her doctor for advice regarding reducing dose/how long to persist. I found co-codamol eased it slightly but would not consider strong pain medication to be a long term solution just to mitigate the side effects of another drug. Also be aware that although side effects can be experienced right from the first dose, beneficial effects can take days to weeks (some even say months) to show up, so if she is tolerating it well but not gaining any immediate benefits straight away, that is normal and not a sign that it will not work for her. My first ever dose also gave me really bad stomach pain, but I attribute that to the fact I was barely able to eat and had missed my usual acid suppressing medication due to being in hospital. Subsequent doses didn't cause this particular problem. If she has a sensitive stomach, taking with food or milk is a good idea, and making sure any acid reflux drugs aren't missed. Best wishes I hope it really helps your daughter! B x

Hi Peter I'm sorry your visit to UCLH wasn't fruitful. I am currently on a 10 month waiting list for autonomic testing there (if the Scottish Health board will fund it). If your problems now relate more towards peripheral neuropathic pain and loss of balance, maybe a general neurology clinic would be the next step if you haven't already been to one. It may be that the autonomic specialist at UCLH has a very narrow and specialized focus of practice and is not equipped to deal with wider ranging neurological issues. Can I ask if they did supine and upright catecholamines and blood autoantibody tests? Those are what it has been agreed I will have. I do wish there was more willingness to focus on symptom relief though than just test after test like a lab rat with nothing gained from it and no further care if your results aren't conclusive for anything. My dad has offered to pay for me to visit the US to see Dr Grubb, and I am also on a waiting list of about 10-12 months for this too. If going private is an option for you it may be worth looking into. There is a private autonomic specialist in London Professor Mathias at Queens Square, but the impression I have gained from other patients and contact with his office (which has only email contact, no phone number to speak to anyone) wasn't favourable. Best wishes with your next steps, never give up seeking help. B x

It would be great if we could all pool our individual dysautonomic quirks - high BP, low BP, low blood volume, fluid retention, weight gain, weight loss, diarrhoea, constipation, insomnia, hypersomnia etc etc.. & just take back out the right balance! B x

That's a shame it can't be tightened - I too have skinny wrists! Anyone else lose a lot of weight with POTS? Wow washing dishes and showering though!!! If it confers superpowers like that perhaps I should get one for my ankle! B x

That is really helpful thanks. I'll look into him if I don't have any luck with Dr Grubb whose waiting list I am currently on. I would love to hear how you respond to the low dose Adderall! B x

Please do let us know how you get on there. I have considered him but decided to see Dr Grubb in the US instead, as barring regular IV fluids which nobody can get in the UK the only thing I haven't tried are the stimulants such as methylphenidate. I know for a fact Dr Grubb prescribes these, in fact he has written papers on it, but I am not sure Dr Matthias would and I do not want to waste £400 to come away with still no treatment. B x

That's great news I hope it gives you some relief! Would you mind sharing your cardiologist's details just in case I don't get anywhere with Dr Grubb? You can PM me if you'd rather not share publicly. B x

Yes I have all the symptoms you describe as well. My diagnosis is POTS. Type undetermined but I also have EDS. Did you have a tilt table test or standing test when you were diagnosed? I personally think symptoms are more important than numbers & labels and if you can you should find a doctor who is willing to address your symptoms not just suggest very basic lifestyle advice that all of us are doing anyway long before we reach a clinic. Best wishes, B x

Mine started off pretty bad from the outset, which was extremely sudden, not gradual. It has got worse over time although this is not the case for everyone. I have EDS which weakens connective tissue as you age, however I am not entirely convinced my issues are due to lax veins as I have no varicose veins even after 3 term pregnancies, and surely that would have made for a more gradual onset. I cannot pick apart in my case whether a) the underlying pathology whatever that may be has got worse, b) I was fit before I got it so strong muscles and heart may have helped in the early stages until I became deconditioned from not being able to stand or c) medication that initially worked (licorice root caps for me) lost efficacy over time. I suspect it is a combination of factors. It does seem to be common for meds to poop out on us after being effective for a while. Florinef in particular (licorice root works similarly to expand blood volume) has been shown in studies to boost the blood volume initially but this is not sustained and it eventually goes back down to baseline. With beta blockers - or when you block any receptor - generally the body seeks to restore homeostasis, however screwed up that homeostasis is, and over time upregulates the blocked receptor (ie cardiac beta receptors) and produces more of the substance that activates them (noradrenaline/adrenaline). If you can be upright I would celebrate and build on that and not worry too much about heart rate. By being active you are avoiding deconditioning which in no way causes POTS but can definitely make it worse. If you have the option of going to a specialist centre to be tested for your specific type or cause of POTS I would do that as it may help enable better targeting of meds that can help you. B x

I'm glad you've got a plan. It isn't worth paying to see someone whose only suggestions are water salt & exercise. Like anyone who can use google isn't already doing all of that. Just one more thought - was that coffee decaf or for someone else? Coffee always had a strong diuretic effect for me and I haven't been able to tolerate caffeine at all (even black tea) since developing POTS, so it might be worth cutting out caffeinated drinks and seeing if that helps even a little bit, although on the other hand some people report getting a boost from caffeine. B x