bombsh3ll

Hi Midori, I'm sorry you've been through so much and for so long. 

I think 15 years ago it would probably have been much harder to find relevant information online, and the gradual appearance of more and more symptoms over time probably also confounds the difficulty in identifying what may be going on.

I was the opposite - very sudden onset, researched symptoms and came up with POTS diagnosis myself within 3 days by matching symptom presentation, demographic (young female) and orthostatic pulse changes to the description of POTS. Technically diagnosis requires symptoms to be chronic for 6+ months, but time proved me right and after 3 years fighting for a formal diagnosis I got to see Professor Newton in Newcastle UK who diagnosed me based on symptoms and monitored stand test. 

I think it would be really helpful for you to seek out someone who specializes in autonomic disorders and present them with your history, own orthostatic readings and suspicion of POTS. I really recommend being direct about your concerns and the condition you want to either rule in or out, in order to get the best out of your appointment. 

I am in the UK and had to fight to be taken seriously, find a suitable specialist myself and pro-actively organize an out of area referral and funding. 

The good thing is that there are a number of treatment options if you are conclusively diagnosed with POTS or other autonomic disorder, which could really transform your life. 

As yet I haven't found anything either particularly effective or with sustained effectiveness, but I am still looking and having a formal diagnosis is very useful, as well as feeling validated that no you are not crazy and yes you do have a recognized physical disorder. 

Best of luck,

B x

12 hours ago, Peter Charlton said:

The NHS couldn't find anything wrong with me in two years, as my symptoms never co-coincided with their Holter monitor tests, so I bought a Prince 180B ECG, I see they are £92 now on Amazon

Thanks I just looked up this device and might get one for when I am having a lot of irregular beats. It looks as if there are multiple ways to use it, which do you use? Do you ever use the leads with pads? Do you hook it up to a computer screen to see the actual ECG?

12 hours ago, StayAtHomeMom said:

Did you wear the Garmin above your wristbone?

Yes, I just wore it like a normal watch. Looking at my watch just now it is above (proximal ie elbow side, not hand side) my wristbone (ulnar prominence on pinkie side). Sorry it is hard to describe without a picture! Is that not where you wear it? I don't think I could wear a watch, even a slim one, in front of (below) this. It did always get a reading on my pulse but it was usually quite a bit out when compared to medical equipment and slow to reflect changes eg if I went up stairs. I'd feel my heart hammering away and it would still be saying 68.

I do have poor circulation to my hands, feet (& unfortunately head!) though so it might work better on someone with better blood flow. 

Pretty much all of the reviews I read on this type of product were by healthy people using them for sport, but the general consensus even in that population whose hearts are presumably un-grinchlike and hands toasty, is that the strap ones are better, but they are more cumbersome and high maintenance so if you've got a good wrist based one that's great, it was much slimmer and nicer to wear. 

PS  ironically for someone hardly off the couch I think it was actually a garmin vivo "sport" rather than "smart" if that makes much difference.

B x

Yes I frequently wake up early, full of adrenaline with my heart pounding. If I have my BP machine next to bed I check and HR/BP are usually normal by the time I check (but higher than would be expected for lying quietly in bed). 

Personally I have the best chance of avoiding this when my alarm wakes me early the days I work, before it has had a chance to happen. It is days when I don't have to get up so early and wake up spontaneously that I usually experience it. Today was one of them!

Funnily enough I always had a tendency to wake up inexplicably anxious with a pounding heart every once in a while long before I had POTS. At that time however getting up and starting my day was enough to see it off - without having to chug a litre of electrolytes and get up in very slow stages!

B x

I wear a polar watch with a wahoo chest strap. You mentioned not liking a chest strap but really it feels no different from a bra (if you are female!). I don't often wear a bra as I am small chested so just have the strap around my chest. 

I have had two previous polars but the polar straps always stopped working after a couple of months so I switched to a garmin vivo smart which takes your heart rate at the wrist. This looked slicker than the chunky polar watch but it wasn't very accurate when checked against BP machine/pulse ox. This seems to be a common complaint with wrist based monitors, and probably even more so in people with dysautonomia whose peripheral pulses can be quite weak. 

I was really pleased to find a different brand of strap compatible with the polar watch. My current strap has a small watch like battery that can be easily changed. I don't swim so I don't know about its suitability in water. 

I am also interested in the home ECG devices, cost, accuracy, ease of use etc and would like to hear people's experiences.

B x

Welcome! Those are some great ideas you have already.

Only couple of things I would think to add are if you don't pass out, there are options in between a cane (which doesn't give you an immediate place to sit) and a wheelchair (which can lead to deconditioning of your legs if it is not really needed). I do have a wheelchair but don't use it full time. I also have a cane seat which is handy to carry and opens out into a seat, and a rollator which gives you more stability when walking and also has a seat. I choose which to use depending on where I am going, how I am feeling and if alone or accompanied. 

Also regarding the BCP, there are regimens which can run for up to about 3 months without a bleed, so if periods are a real problem it would be an advantage to have something like that than one with a withdrawal bleed every 4th week.

Good luck,

B x

Fluid loading (IV if you can get it, extra oral rehydration solution if not) and diazepam are what help me. I found beta blockers relieve it a well but with the unfortunate side effect of being even more syncopal, so in that respect I'd take the chest pain over unconsciousness. 

I don't believe the chest pain in POTS is muscular, I believe it is due to the effect of high levels of catecholamines on our hearts, which are probably also underperfused and working harder than they should have to (even though structurally and electrically they are healthy).

Hope you find something that helps. 

B x

1 hour ago, GasconAlex said:

OK, the US health and disability systems are complex, arbitary and plain scary and I know little about them so I'll leave that to others.

But, if you need disability don't be put off by feeling you don't deserve it or you aren't disabled enough. I left it far too long because I didn't want to be 'handicapped', but the thing is what they décide isn't what makes you handicapped - it is what you can no longer do. If you can still do stuff, good. Do it, try and do as much as possible, but don't pretend that because you can still do some stuff you haven't lost the ability to do lots of normal stuff too. I no longer care about the label, it was pretty obvious to everyone that it included me even without my accepting it, 

I totally agree. I too have no understanding of the US system and currently do manage (but really struggle) to work 2 days in a seated job with my legs elevated on a crate underneath my desk. 

When this becomes unsustainable either due to passing out or no longer being able to drive safely, I will be claiming disability benefit. 

I had the same kind of conflicted feelings over buying a wheelchair, but my experience was that it actually made me less disabled not more, as I am able to go places and do things with my family that I wouldn't be able to do otherwise. 

I think the same applies to claiming disability - by making your life easier and giving you opportunities not currently available (for example if you just come home and have to go to bed rather than having the spoons left to spend the evening with your loved ones) that makes you less disabled. Who cares about the label!

Good luck if you do decide to claim.

B x

23 hours ago, RecipeForDisaster said:

Interesting... it was a well known autonomic neurologist who ordered the 24 hour urine electrolyte measurement to estimate blood volume. I would think that would be extremely variable considering your electrolyte levels fluctuate!

An estimation of blood volume based on urinary electrolytes/osmolarity would be based on an assumption of normal salt and fluid handling. Unfortunately this cannot be assumed to be the case in dysautonomia patients, many of whom have deficiencies in the necessary fluid retaining hormones such as renin, aldosterone and vasopressin. There is a good paper by S Raj on the Renin Aldosterone Paradox in POTS which highlights this. 

21 hours ago, Lainy said:

For those that take licorice, what does it do to help you? Is it safe for someone with hypertension? 

Licorice is usually recommended to be avoided by people with hypertension, BUT that is for the general population. People with dysautonomia can have high blood pressure as a response to hypovolaemia, which licorice helps with. For me, basically it helped me STAND, WALK and sit comfortably without lightheadedness/presyncope. 

The only way to know how it affects you would be to try it and monitor your BP (with the approval of your doctor). After 8 months chairbound I was standing with a huge grin all over my face just a few hours after taking 2 x 450mg capsules, so in my experience it did not take very long to see an effect. You would not have to be on it for weeks to know whether it was going to help or not, and it could easily be stopped if either it didn't help or your BP went too high. 

Maybe I could have kept it working for me for longer by saving it for special occasions rather than daily use, but of course if you have had a teeny taste of upright life back again, you want it every day, and after about a year or so my body got used to it and the effect waned. I do still take it though as I could be far worse off without it and do not want to find out.

21 hours ago, ANCY said:

Do you get a heart murmur when fluids are low?

Yes I had a heart murmur when I was admitted 4 days after the sudden onset of POTS. It led to me getting an echo which was normal, so I was glad about that as without a murmur my heart wouldn't have been properly assessed on the NHS. On subsequent occasions the murmur has not been there so I do think it varies with volume status.

B x

ANCY I am so sorry you are dealing with all this  but I am relieved to see that it is being investigated. It is not normal or sustainable for anyone to just live with a haemoglobin of 5.2 and something is definitely going on to cause this. I hope you soon have an answer and a treatment plan. 

I'm the opposite - high haemoglobin due to low plasma volume! I don't really have high Hb or red cells it just looks that way as my blood is too thick and concentrated. 

Keep fighting and I will also pray for you.

B x

If the SSRI seems to be making things worse, then I would talk to your doctor about stopping it. 

I also totally understand the difference between psychological anxiety and a physical hyper-adrenergic state due dysautonomia (although there are other medical conditions that can also induce it, which should be excluded).

Early on in my illness I was misdiagnosed as having "anxiety" (I myself had identified within 3 days of onset that my presentation was consistent with POTS and had nothing to do with my mental state but it took 3 years to get a formal diagnosis), however at that time I agreed to take an SSRI having read that they can in some cases be useful in regulating autonomic responses to standing.

I did not have any side effects but no positive effects either, so came off it after a few months. Real mental health illnesses are not affected by body position nor are they responsive to volume expansion. 

Depending on your particular presentation a different type of medication may be more suitable. Adequate treatment of POTS in my case (if it existed) would certainly cure my depression, since if you are only depressed due to having a poorly controlled chronic illness this is normal ie reactive depression to an unpleasant experience, rather than a mental health problem. Even if you are genuinely depressed and have a mood disorder that pre-dated physical illness, there are other options that may be more tolerable. 

If you haven't already, I would see a cardiologist or better still an autonomic specialist if you can, and have a proper evaluation for dysautonomia rather than trying to get anywhere with someone who is dismissing you as just having "anxiety".

Best wishes,

B x

PS there is no reliable way to estimate someone's blood volume from a urine collection. 

There is some kind of CO2 rebreathing method for blood volume assessment that some labs use. I do not know the accuracy of this or if it is widely available. 

B x

I had the test in the UK, same principle as DAXOR but it was botched due to the long transport time of my blood to and from the lab across London to be labelled with isotope. The blood was clotted by the time they tried to re inject it and I had lost my IV access. 

I am positive I am hypovolaemic as I feel best at night after hydrating all day, and initially had a fantastic response to licorice root although this waned after about a year. Unfortunately I can't tolerate fludrocortisone. 

Saline helps minimally but access to this is very limited, and most of it is in my bladder anyway by the time the bag is done - may as well just pour the IV bag directly into the toilet.

I would LOVE LOVE LOVE a blood transfusion!

Wish someone could come up with the answer to this. 

I also tried desmopressin which helped me sleep through the night without peeing but didn't help me stand and lowered my sodium too much as I produce no renin or aldosterone.

B x 

What is your BP doing at the time and are you taking any medication? You can get reflex bradycardia when your BP is raised, either naturally or by taking something like midodrine.

My resting HR can be in the low 50's too. My HR and BP often don't correlate well with how I am feeling.

Have you had your thyroid checked?

Another theory I have (this is not scientifically confirmed) is downregulation of cardiac beta receptors after prolonged exposure to high levels of noradrenaline.

B x

On 8/1/2018 at 6:03 PM, andybonse said:

Just got my celltrend blood test results back and I am positive for 6 out of 11 tests.

I am really interested in this too! Did I read in one of your posts that you are also in the UK? How did you go about arranging these tests, was it complicated? I can easily get a colleague to take my blood - well, actually getting it out of my volume depleted veins is no small task - but the logistics of getting it to where it needs to go under the correct transport conditions I imagine is more difficult.

Do keep us posted on whether you get anyone to treat you with IVIG - I would also like to explore this but think the chances on the NHS would be minimal.

B x

Thanks so much for putting this up! Please read and decide for yourselves if it is something you can support especially all those in the UK!

B x

Looking at the accepted medical definition of POTS,  the jump in heart rate with upright posture of 30+ beats AND symptoms such as lightheadedness equals POTS (provided no other explanation is found after investigation such as blood loss, endocrine disorders etc). If the lightheadedness only occurred one time though I can see why he may not think it is POTS. 

Lightheadedness is certainly my biggest symptom for sure! "Anxiety" can also be a symptom, but in POTS it is not psychological in origin, it is the result of high levels of noradrenaline as the body works extra hard to get blood up to the brain. 

Have you been given any treatment?

B x

Hi Peter,

Low intravascular volume and oedema certainly can co-exist. An example is patients with liver cirrhosis (not sugesting this is you) & those whose blood vessels are leaky for various reasons, allowing proteins which would normally not pass through to escape, followed by water.

The compression stockings mentioned above can be helpful if you haven't already tried them. I get them on prescription from my GP (that is the only NHS treatment I've ever been given). 

Sleeping with the head of your bed elevated is also said to be helpful in reducing nocturia and increasing blood volume. I personally haven't found it helpful but I keep the bricks under my bed in hope! I've never had oedema though. 

How is your protein intake? Increasing albumin levels can in theory help retain fluid in the vasculature, again it is something I try with although my appetite is poor.

Unfortunately I think the only way forward is to keep calling the waiting list office at the autonomic unit. I hope to be joining that too very soon, currently working on getting out of area funding as I live in Scotland. Some places have cancellation lists for if someone cancels/dies/becomes too unwell to attend whilst waiting so do let them know if you'd be willing to take an appointment at short notice. 

Best wishes, I hope you get some relief soon.

B x

The petition below is appealing for UK POTS patients to be able to access IV saline;

https://www.change.org/p/nhs-approve-iv-saline-therapy-for-the-treatment-of-pots-under-the-nhs

I would be so grateful for any signatures that could be added - even if you are not in the UK it could help indirectly in terms of clinical evidence gathering on the efficacy of saline, and also by setting a precedent that may encourage doctors in other countries to be more willing to offer this treatment. 

Please consider signing!

B xxx

Yes I was actually going to post about headaches myself to compare experiences! I had only had about 2 headaches in my life before getting POTS at 34, and since then I've had constant headaches. I wouldn't describe mine as migraines as they are generalized not unilateral, and not associated with any visual or neurological disturbance. They are definitely postural ie present when sitting, worse if I stand although I can't do that for long, and relieved by lying down. My neck is also painful. 

I believe in my case they are the "coathanger pain" described in dysautonomia due to hypoperfusion - any body part starved of an adequate blood supply is painful. 

I do have EDS and saw Dr Gilete in Spain who thought they were related to cranial settling and cervical instability - this would also be relieved by lying down as the force of gravity is removed, and would also be exacerbated by vibration/going over speed bumps etc which mine are - however 2 other opinions on my upright scans say no cranial settling, no marked instability and one mentioned only very mild tonsillar descent, not obstructing CSF. 

Also at times when my POTS has been better such as when I first started Licorice Root and it worked like magic, the headaches were relieved, which implicates hypoperfusion rather than structural problems as the cause.

For pain relief I take codeine, which I try to use sparingly due to sluggish bowels, and I take regular ibuprofen three times a day anyway for volume expansion & to minimize postprandial symtom increases. Paracetamol alone does nothing for me but it does help boost the effect of the codeine. 

B xxx

No, there are no studies that I can find on its use in POTS, and only case reports of its use in ME, however no medicine has a particularly strong evidence base for efficacy in POTS nor is licenced for this condition specifically, so it would be empirical use based on its mechanism of action, i.e. increasing cerebral blood flow. It has no direct action on the heart and only a very minor effect on peripheral vasculature so theoretically could be useful, and has a good safety/tolerability profile. 

I am thinking about giving it a try. All existing medical evidence is born out of the idea that drug A may be effective in condition B because of how it works, and usually starts with one or two case reports, then larger scale studies and placebo controlled trials if there is sufficient efficacy, interest and funding. 

If I do decide to try it I will definitely post the results good or bad!

Wow thanks Corina I may look into that if I cannot find anything closer to home. I do not know what the heatlh system in the Netherlands is like, do they take patients from other countries and do you have to pay privately?

I didn't realize this test was done whilst exercising, I assumed you would just be either tilted upright still, or seated in my case if unable to stand/be upright long enough for the measurements. 

That is really useful info thanks!

B xxx

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

On 7/27/2018 at 1:51 PM, corina said:

Bombsh3ll, that was one of the tests my doctor located at the Leiden University Medical Center in the Netherlands did at their autonomic unit. 

PS What did yours show, did you have reduced cerebral blood flow upright?

Many thanks 

B xxx