bombsh3ll

Have you looked into reclining/tilt in space wheelchairs? It is something I am looking into in order to be able to enjoy trips out comfortably rather than suffer through them. B x

Thanks for sharing, do you know if there is any way to watch this online for those who cannot physically attend? Also which one is your doctor? B x

I did, (when I was well of course). I'm a GP. It hasn't really helped me other than being able to identify my diagnoses and then pursue formal recognition of them, and safely access first line oral medication myself. I would love to know where she got that. Prof Matthias' clinic informed me outright that he doesn't treat with IV fluids It's not close, I am in Scotland but please give me the details all the same, it would not be the first or last time I've had to travel to London. Ice cold hand or frozen veg to back of neck & breathing in deeply through nostrils (same principle as impedence threshold device, increases preload) help me marginally. B x

These are symptoms I identify with too, normal/high BP, sympathetic excess - chest pain, non psychogenic sense of anxiety, shakiness, sweaty/chills, ice cold extremities but presyncopal, brain feeling very much starved of blood flow. What is your best treatment for this? I am thinking that even if I could get ritalin it may be the opposite of what I need for this. B x

I have no way of knowing for sure if I have cerebral vasoconstriction, but my symptoms are constant lightheadedness even sitting with normal BP/HR, chronic headaches which I attribute to hypoperfusion, and presyncope when standing. I however do feel better (but not perfect) lying down. I will ask about the autoimmunity research when there. I have EDS as well (hypermomobility type) but this was only diagnosed after and because of POTS. Otherwise I would have just accepted that I have "poor collagen" as I was not disabled in any way by it prior to POTS. I was worried they would just attribute it solely to EDS in my case and not look for anything else. I don't believe it is just due to lax vessels as it came on suddenly after a forceful valsalva. Surely venous laxity would develop insidiously? May I ask how/where you got your blood centrifuged to send off to Cell Trend? Thanks for all the helpful info, B x

I'm also skeptical of SSRI use to treat dysautonomia. There are no published placebo controlled studies evidencing benefit however many people do anecdotally report positive experiences. Certainly Sertraline (another SSRI) did nothing for me, and I regret this being on my medical records due to the psychosomatic inferences. Personally I would rather have the Xanax as benzos do help me by lowering sympathetic activity. At least the SSRIs are a comparatively safe class of drug to take compared to some of the alternatives. B x

Is the difficulty with your parents needing care themselves or becoming less able to care for you? I can see how both are a worry. My dad is getting on in age and becoming increasingly forgetful, but is very physically fit and active. He stays with us for most of the week to help me at home and do things like taking my son to & from school. It sounds selfish but I worry about how I will manage when he is no longer able to do so much for me. I just hope that my children get to ages when they can do things for themselves and help me out as my condition progresses, before my dad becomes infirm. We're lucky to have space so he would never have to go into a home, and it is also much cheaper to get home care staff in if needed than a residential facility. I joke that between us we have one healthy body and one sharp mind (well it is when I am lying down!) My husband is also amazing but he works full time. B x

I'm sorry you're dealing with this. At least you have a starting point now following your tilt. I would definitely try to see someone who specialises in this area if possible as there may be better treatment options for you. What was his rationale for the Paxil? B x

Wow that is great!!! Do you mean the autonomic unit at UCLH? That's where I'm going in 3 weeks. I am amazed there is someone in the UK taking autoimmunity seriosly as a cause. I had planned to ask them myself about doing the celltrend testing, but my concern about this was even if clear positive results came up, I doubted anyone in the UK would be interested or willing to treat it. B x

For numerous reasons women tend to fare more poorly than men in healthcare when it comes to erroneous psychological diagnoses, being seen as "neurotic" or "hysterical". Prof Newton shared her thoughts with me on why POTS & related conditions receive so little interest & research funding, & it had to do with the demographic typically affected. I'm glad this was not your experience though and am still very interested in going there. Please do! Have you ever had or been offered a transcranial doppler to assess cerebral blood flow? I was told his clinic has that facility. Also do you pay to see him and how much is it, if you don't mind sharing? Hope the appointment went well. B x

It would depend on how much fluid was in your vasculature. You could have a net excess of fluid, with either too much or just the right amount in your vessels and some in your dependent soft tissues, or too little circulating volume (intravascular volume depletion) but still have oedema. A lot of factors come into play such as protein levels, how leaky your capillaries are, heart or liver problems and many more. We're complicated! B x

I'll def check out his videos. Finding somebody in the UK who can spell dysautonomia is a major bonus let alone treats it. I went to Newcastle to see Dr Newton who was lovely and has published some quality research, but I only got diagnosed there, no treatment as I was not local. I think Dr Grubb is amazing from what I've seen, read and heard of him and would really love to see him if I had the money and was well enough to travel to the US! B x

I don't have gastroparesis but I do struggle with nausea and no appetite due to being presyncopal all the time and eating drawing even more blood flow away from my brain, so I have lost considerable weight since developing POTS. I blend things up in my nutribullet and drink a lot of protein shakes. The bullet allows me to get fruit and veg in - would this be an option for you or are you advised to avoid them even in liquidized form? I find liquid a lot easier to take than solid food. One medication that I tried for POTS was pyridostigmine aka mestinon. Rubbish for orthostatic intolerance but definitely got my digestive tract moving! Is this something you have tried or could ask your doctor about if the other meds don't work? I have had reflux and chronic constipation/poor motility all my life long before POTS - I attribute to having EDS rather than POTS. I take omeprazole and movicol for these. Magnesium citrate also helps me go. B x

Anybody know what treatments he uses? I couldn't actually find any mention of therapies on his website. I have pretty much exhausted all options except stimulants, injectables and IV fluids. B x

Congratulations on getting approved for a port!!!! I an so envious, the UK NHS doesn't believe in giving POTS patients IV fluids at all. I hope it goes smoothly for you and becomes your new best friend! B x

Do you pay to see him privately and if so how do you rate him? Is it very expensive to see him and have tests there? I was pointed his way by another clinic when I enquired about getting a transcranial doppler to assess cerebral blood flow - apparently he has access to TCD. I have considered making an appointment with him but been put off by others' experiences. One lady paid over £300 for an hour and he spent most of it asking about her marriage/divorce as if implying her problems were psychological. I would really like to hear an up to date perspective on Prof Mathias. I have an appointment at UCLH in 4 weeks and want to have an idea of other options in case I get nowhere there. Do let us know what the stimulant drug is and if it works (if you try it)! That's so good to know! I don't have a formal classification as "hyperadrenergic" as I've never had supine-upright catecholamines drawn - on the NHS you are extremely lucky if you get even a basic tilt or stand test and luckier still if the person interpreting it has heard of POTS and isn't just looking for BP drops or arrhythmia - but based on my symptoms and hypertension I "feel" as though I am hyperadrenergic. The hyperadrenergic state could however be secondary to volume depletion. I tried to get my blood volume measured but technical problems spoiled the test so I didn't get a meaningful result. I wonder if/how ritalin would help me given that I already seem very vasoconstricted - cold pale extremities, no veins etc. Specifically how does it help you? I am looking for increased cerebral blood flow ie not to be presyncopal all the time, and to be able to stand up (or at least be able to sit upright comfortably without lightheadedness and headache). I am really interested in trying all options. I tried midodrine but it wasn't a good fit - higher BP (which I don't need), still presyncopal and squashed my heart rate. Did you try midodrine before ritalin? I am trying to work out if it would help someone who didn't do well with midodrine. B x

I have communicated with Dr Driscoll personally & she is lovely & very knowledgeable, and has genuine lived-experience of what it is like to be this unwell. Her theories on the cause of POTS are quite narrow though (raised ICP) and may work well for a small subtype but be a poor fit for many. The recommended treatment is diamox which unfortunately is a diuretic. I did try this off my own bat & it wasn't the right direction for me, but glad I ruled it out. If I could afford & was well enough to travel to the US, I'd see either Blair Grubb or Randy Thomson, based on their reputations and publications. B x

How and where did you get your noradrenaline levels tested in the UK? I would really like to get mine checked. I feel mine are high and although I feel presyncopal all the time my BP is actually on the high side not low. I have had two normal urinary catecholamine collections to exclude phaeochromocytoma, but would like plasma levels checked. Good luck with the droxidopa if you get it. Another possible option is ritalin. I've considered it but it may not be the best fit for me if I'm hyperadrenergic. B x

A rare find indeed, particularly in the UK!! Thanks for sharing this. I have also heard good things about Dr Nick Gall in London http://www.gallcardiology.com , and was thinking of seeing him if I don't get anywhere with UCLH. This guy sounds impressive and would be much closer for me to get to. I have seen a private cardiologist locally but had to educate him from scratch about POTS. B x

Yes, I think dysautonomia absolutely can cause such bad cognitive issues. That is certainly my experience. I too can be sitting there with perfect heart rate, BP and O2 sats and feel extremely lightheaded and out of it. Remember that peripheral measurements of heart rate and blood pressure are not surrogates for either cardiac output or cerebral blood flow. To calculate cardiac output, stroke volume has to be known, and that can only be measured with much more advanced and invasive tests. So two people can have the same heart rate and blood pressure, but vastly different cardiac outputs and hence cerebral blood flow. I just wish more doctors remembered the basic principles of circulatory physiology from medical school rather than deeming a highly symptomatic patient to be perfectly fine based on their peripheral vital signs being normal. Have you got a date for the autonomic unit yet? Is it the one at UCLH? That's where I am currently trying to get in once they accept my out of area funding. best wishes, B x

We don't always fit neatly into a category, but your description sounds closer to vasodilated than constricted. Were you always cold before midodrine or just with it? Basically it makes you more vasoconstricted which does lead to coldness. I am like that naturally. I was always a cold fish even before POTS. B x

I am not sure about formal testing but factors suggestive of a vasoconstricted state are cold extremities, pallor and BP that is on the high side (this is like me). Also having tiny invisible veins and being very difficult to draw blood from (I didn't used to be like this prior to having POTS - I had big juicy veins). Vasoconstricted types don't tend to do well with drugs like midodrine. A vasodilated person would tend to be warm to touch and may have lower BP. They would probably feel better on vasoconstricting medication like midodrine. Which type do you think fits you best? B x

Doesn't anyone else find the diuretic effects of caffeine a major issue with POTS? Coffee always used to make me pee long before I even had POTS! B x

I've wondered about this too - my BP tends to run high. Increased stroke volume and cardiac output sound great, diuresis not so good! I am clinically in stage 2 hypovolaemic shock most of the time, but since I don't produce renin at all and barely detectable aldosterone, the suppression of this system may not be an issue in me. I would also like to hear anyone's experience with these. B x

I am in the UK and get compression tights on prescription. I have noticed others in different countries including the US getting compression wear on prescription so first of all see if this is an option at all for you. I wear sigvaris magic full tights, class 2. Any tighter and I wouldn't be able to get them on. I think they help a very little, but I need every little help I can get. They are machine washable and very hardwearing. They don't tear easily like normal ladies' tights. For me, knee highs weren't effective at all, thigh highs kept rolling down (and I am not very mobile, so if you walk this would probably be worse.) I have heard of people buying glue and things to hold them up, but it didn't seem worth it. Abdominal compression alone was horrible. I felt like it was actually trapping blood down in my legs and stopping it from getting back up. The tights have graded compression which gets lighter from ankle to waist, to encourage the blood to flow in the correct direction. Of course, everyone's experiences and preferences are different, but this was what I found. My brand of tights (they also make stockings in various types knee thigh etc) can be ordered online without a prescription, but would work out very expensive for an item you wear daily. I hope you find something comfortable and affordable! B x