bombsh3ll

1 hour ago, Mbritt724 said:

I'm weary of any new drugs, especially brain altering ones... ugh.

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

11 hours ago, andybonse said:

I am being referred to the autonomic unit, a doctor who Prof Mathias has trained and worked with who is very well into this illness, she is currently researching autoimmunity and antibodies,

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

22 hours ago, andybonse said:

I just can't imagine him sat there for an hour talking about someones divorce lol.

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. 

22 hours ago, andybonse said:

I am seeing him tomorrow, so will keep you up dated.

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

On 8/29/2018 at 11:12 PM, Peter Charlton said:

Not that I am aware of, but I did start a thread here a while back along the lines of as I have Oedema due to a measure of heart failure, even if a drink enough, if the fluid just hangs around in my legs and feet, would that give me the same symptoms as dehydration?

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 

18 hours ago, andybonse said:

Prof Mathias in London arranged the tests at their autonomic lab, they did it while they did the TTT. They take the blood while your supine and then upright, so pretty simple test to do! 

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)!

18 hours ago, Pistol said:

Bomsh3ll - I am hyperadrenergic and take Ritalin with good results.

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

Nothing majorly sticks out there, the monocytes may or may not be significant. I know how it feels to actually want something to be found so it can be treated. None of these tests either point to or away from gastroparesis, as Kim suggested a gastroenterologist would be the best person to arrange specific tests for that. 

When I first became unwell with POTS, I was nauseated with no appetite (and still frequently am), got reading and convinced myself I had gastroparesis. That doesn't seem to be the case as time has gone by, and I believe that in my case the nausea is due to chronic cerebral hypoperfusion. It is a classic presyncopal symptom.

I hope you manage to get a diagnosis and some relief.

B x

To my knowledge SSRIs are not supposed to have any significant effects on BP either way. Anecdotally they are frequently reported to be helpful in autonomic disorders and many people on here seem to use them. I tried sertaline (zoloft) myself (I have POTS, BP high normal so different presentation) and found it of no benefit. There are no published studies that I am aware of comparing SSRI use to placebo in POTS or orthostatic hypotension.

B x

I can totally relate to being aware of how my kids and other people in my life see me due to POTS. I have a son who is 9 and a half, and he remembers me as being able bodied for the first 5 years of his life, then must have been so confused when I totally transformed in a day to being very limited. He will sometimes exploit my condition by running out of reach as he knows I cannot chase him, or moving the TV remote away from me when it's time to turn off his TV. My daughter on the other hand is 5 and I developed POTS when she was 14 months old, so she has only ever known be to be disabled, and helps me a lot, as young as she is. 

I try to be positive yet honest with them, and hope that although they miss out on a lot, having a parent with a chronic illness will teach them compassion and sensitivity towards other people with limitations that they encounter in their lives. 

I don't know what to think about the HPV vaccine to be honest. The teenage years are a common time to develop POTS and it figures that a certain number of young people will get it soon after being vaccinated, but proving causation is difficult. I too would probably rather take my chances with cancer though than POTS, at least it generally has a better than 50% cure rate plus the medical system and people in general are much more understanding and sympathetic towards cancer as an illness. 

B x

I used to take a teaspoon and a half of salt a day, mixed with water. It made no difference whatsoever, just made the water taste horrible.  I recently switched to commercial rehydration sachets 2-3 litres a day which is a little less salt overall and a lot more palatable. It is hard to tell but I think this is marginally better in terms of retention, as it is what the ORS formula was designed for.

I strongly suspect low BV in my case as I urinate 6+ litres per day, produce no aldosterone, have cold peripheries even in summer and very difficult IV access. Before POTS I used to have plump juicy veins and no bother getting blood out. I had a nuclear medicine BV test but it failed due to technical problems so I have never had mine properly measured.

The ORS sachets are pricey but I have actually ordered all the separate ingredients as powders and plan to try mixing my own, just waiting for a measuring scale to arrive. 

When I saw Professor Newton who diagnosed me, her general recommendation for POTS patients was 1 teaspoon of salt per day. I don't add salt to food as I don't like it.

I have read differing studies and opinions on extra salt in orthostatic disorders - some indicate it is helpful, others suggest any effect is only transient as the body adapts and just pees out any extra, particularly if you don't/can't take florinef. Just from my personal experience with salt I am inclined to believe the latter. 

B x

I couldn't tolerate fludrocortisone due to side effects and it also didn't seem to help me, but I take Licorice Root as an alternative. It basically does the same job but by a slightly different mechanism - tricking your own cortisol into acting like a mineralocorticoid. I don't produce any detectable renin and my aldosterone is always below the bottom of the range, so some form of mineralocorticoid replacement is essential for me. 

I have sadly found the same thing in that it was absolutely fantastic for about a year and then over time I must have built up a tolerance to it. Either that or the underlying condition has worsened and/or I have become progressively more deconditioned due to being chair bound. My endocrinologist suggested either a) upping the dose - which is not really sustainable, gave me worse headache when I tried and would be above the recommended safe dose, or b) taking a holiday from it to desensitize the pathways it works on, and hopefully it would become effective again. 

I am afraid to do the latter as for all I know I would be bedridden without it and I have children depending on me. Also studies I have read indicate that whilst rodents can survive indefinitely with extra salt if they have no endogenous mineralocorticoid production, the same in dogs and humans is rapidly fatal. 

As you do have some natural aldosterone production, maybe the drug holiday suggestion would be an option for you to discuss with your consultant, although it may be pretty miserable in the short term. 

Do let us know if you come up with a solution to this. It is something I have wondered about a lot as Addison's patients don't seem to need progressively escalating doses or develop tolerance, and likewise for me the licorice root is replacing a deficient hormone rather than being additive.

I have however read a couple of studies which show the volume expanding effect of fludrocortisone is generally transient, and where it remains effective over years this seems to be as a result of adrenergic receptor sensitization on blood vessels, ie a vasoconstricting effect, which I certainly don't need. 

B x