bombsh3ll

I looked at these as well, they have just become available in the UK. They are expensive and I already take more sodium and potassium than this in the commercial electrolyte drinks I use, but when I was looking at them I figured out that it would be quite easy to make your own with salt, potassium chloride powder, a weighing scale and empty gelatine capsules, all of which are cheap to buy. Just an idea if you find them helpful but the cost is prohibitive. 

Welcome to the site KristaKupcake! My heart goes out to you, it really does. That is just how I started, also in August (4 years ago, the 4th August - I too can remember the exact day and even hour of my onset). I hope you get some tests and appropriate medical treatment soon. Do you know if you will be having a tilt table test arranged? That is the usual way POTS is diagnosed if that is what you are suspecting, and with that pulse increase it certainly a reasonable line to pursue. It can also be diagnosed with an active standing test if the hospital doesn't have a tilt table. The most important thing is to see someone who knows what POTS is or at the very least is willing to look it up. I believe the official diagnostic criteria for POTS require the symptoms to be present for at least 6 months, however that should certainly not preclude you from getting help before then. 

I wish I had the answer, I am still looking, but there are a few things I wish I'd known when I first became unwell - salt and fluid is good, you are already doing that. Basic lifestyle advice also includes raising the head of your bed to help retain fluid, and you could try compression stockings/tights to help keep the blood in the top part of your body. What I think really didn't help me in the first few weeks was that I lost a large amount of weight through nausea and having no appetite, and I also became very deconditioned by lying down most of the time waiting to get better, hoping it was just a temporary illness or something for which I could get treatment & recover once the problem was identified. 

If I had that time again I would aggressively try to avoid losing weight and muscle tone by making sure I had the most effective anti-nausea medication from the off, and getting in as much energy and protein as possible in the form of supplement drinks if needed. I would also have started exercising seriously much sooner - even if you can't stand or walk much like me you may still be able to use a recumbent stationary bike to preserve the strength in your legs and heart. I bought one several months in which was not too expensive and still use it nearly every day.

POTS, if that is what you have, or similar dysautonomias are NOT caused by deconditioning, but most of us quickly become deconditioned due to being so unwell without a diagnosis or any proper care, that we end up worse due to not knowing what is going on in the initial stages. If you can move, keep moving, however hard it is. 

Finally, and this may make the biggest difference (it did to me), you mention taking DGL licorice root. The licorice root with the active ingredient in it, glycyrrhizin, is far, far more effective for POTS and other orthostatic disorders as it helps to boost blood volume (Check with your doctor before taking to make sure you have no contraindications or incompatible medicines). I take Swanson's licorice root capsules, 2 x 450mg daily. These are a herbal supplement that can be bought from amazon & many health food stores. 

It totally transformed my quality of life for about a year until the effects waned, but I do wonder if I'd discovered it earlier on whilst I still had a reasonable level of cardiac fitness and muscle mass, it may have entirely altered my trajectory.

Take care, 

B x

2 hours ago, KiminOrlando said:

You have to have this life to understand why it takes three hours to clean a toilet. 

That's so funny but not funny, I totally get it! I am the same scooting around on my bottom to clean the floors! Good to know others have a more relaxed approach to reclining when needed during the day, alternating with activity. I think I need to move more often, but not be so hard on myself about trying to sit upright all day. 

On 9/27/2018 at 7:51 PM, dancer65 said:

Good luck tomorrow I hope it goes well,  do let us know how you get on .

It was a killer journey to and from London yesterday but worth it to see the autonomic neurologist. I didn't catch her name but it was the female Irish consultant with blonde hair at UCLH autonomic unit. I traveled alone and my main fear was passing out on the journey and being carted off the train to some random A&E and missing my appointment, but I made it! 

No new treatment currently but she is organizing some further autonomic testing for me in the next few months - including autoantibodies!! That is something I was going to pay for through Celltrend so it is fantastic to be getting them on the NHS. She thinks it is unlikely I will test positive because I didn't have a viral illness about the time of developing POTS but will order them based on the fact my onset was so sudden. I refrained from pointing out that most autoimmune conditions develop spontaneously without a viral cause, but was delighted it is not just automatically being put down to EDS (which is present since birth but I developed severe POTS in a day after 34 healthy years - surely it would emerge gradually if it were due to veins just getting stretchier). She told me that if antibodies were positive, I might even get TREATMENT - plasmapheresis is what they offer - whoop whoop!

Next step is the battle with my health board to approve funding for the inpatient tests!

B x

Thanks for the replies, it is really good to get an idea of other people's approaches to this. Today I have my timer set for 20 mins then get up and do something very brief, & allowing myself to recline if needed in between, in order to have a balance between movement and quality of life. I have to get out of the mentality that if I faint it represents a deterioration in my condition, if it happens doing something I would not normally do. Yes if I remain on the couch all day with my legs up I can avoid faints & severe near-faints, but that doesn't mean I'm any better, it just means I am more limited. It is hard to talk yourself into that though!

I have an appointment tomorrow in London at UCLH, the only NHS autonomic unit in the UK. I've waited more than 4 years to see someone who knows what POTS is and might be willing to treat it. I hardly dare get my hopes up of finally getting some specialist medical help, however I've already exhausted most treatments myself being a GP and able to obtain them (bar a couple that are unsuitable or contraindicated in my presentation), so I am pretty much down to stimulants and IV fluids left. 

B x

Congratulations I am so pleased for you! Do update how it goes. A port and fluids as needed is my absolute dream! 

B x

I'm just trying to get an idea of what other people have found helpful or been advised to do regarding getting up and walking around the house every so often when largely chairbound. Obviously there is a balance between boosting circulation and minimizing deconditioning, vs making yourself feel worse for the next little while and risking a faint.

I read a book by Joan Vernikos who did a lot of research on astronauts who come back with a POTS like phenotype, and ground based experiments showed volunteers confined to flat bed rest had to stand up at least 16 times per day to avoid developing orthostatic intolerance. Dr Vernikos estimated this should be doubled (ie 32 times) if you are sitting in a chair and going from sitting to standing. Of course this research was based on healthy individuals but may have some relevance to us. 

Does anyone else set an alarm or reminder to prod you to move around at intervals? I try (but usually fail) to do this every half hour or so.

Also, I tend to force myself to remain sitting upright throughout the day (which makes me feel really lightheaded and miserable with a bad headache) vs reclining, in order to try and maintain function. 

I wonder if I would be better off having reclining breaks to allow some blood flow to my brain. This may also make it easier to get up periodically if not already feeling miserable.

I ride my recumbent bike for 30 minutes most evenings, but during the day I am generally just in the chair with little exercise, although I do lift arm weights for 10min daily. 

I would really love to know other people's ideas/approaches to this.

B x

I take 5mg diazepam as needed. I try not to take it every day to avoid developing tolerance. I would speak to your doctor about a change even if only temporary and then you may find the tolerance you have built up has gone away after a break. It would probably be better to alternate with a non-benzodiazepine for this purpose as tolerance to one benzodiazepine usually means you need higher doses of the next, as they act at the same receptors. I can't take beta blockers, but would a short acting one maybe be an option for you?

B x

47 minutes ago, Kat123 said:

I can eat food I havent been able to eat in awhile

I don't want to discourage anyone from trying something they truly believe could help (and I have tried this program myself) but one thing I have observed consistently in the testimonials is pretty much everyone has a long list of conditions of which POTS is noted well down the list (like who would seriously care what someone else's perfume smells like when they can't stand without passing out) and a limited intake of food is common. I suspect a lot of these cases genuinely did have orthostatic intolerance but the main issues were malnutrition and inactivity due to "fatigue" & other vague reasons in an otherwise healthy body, and once they started eating properly and moving around their ability to stand normalized as it would in any healthy person after a period of being immobile/malnourished. One lady mentions being around 88 pounds. No wonder she was passing out!

47 minutes ago, Kat123 said:

You have to really want it, and it's not easy.

This is the kind of quote that comes up a lot in the DNRS promotion and online community, a sense that if it doesn't work then it is somehow your own fault for not wanting it badly enough or trying hard enough. We all know that's not the case. Nobody on here wants to remain sick and we try and try again multiple different treatments and lifestyle changes exercise etc with tremendous determination and strength. 

I have Ehler's Danlos Syndrome, which I cannot be positive is implicated in my POTS but there is a strong association. I was born with it and no amount of positive visualization is going to change my genes or my collagen. 

DNRS also did not honour the promised refund when I asked to return the pack after 6+ months.  I sold mine on ebay for a lot less than I paid for it and I did feel a bit guilty like I was conning someone else, but on the other hand the advertisements had already done that and at least they didn't pay full price for it. Before anyone thinks I am completely amoral I chatted to the buyer and they did not have dysautonomia (or cancer or ALS or any other serious organic illness in which case I don't think I could have taken money for it and would have had to have told them straight up what I thought - in fact they were well enough to run their own business and using it for an indication with which I have no personal experience and cannot say it wouldn't work). I discovered you can also transfer membership of the forum quite easily too, which we did. 

I would suggest if anybody wants to try it, see if you can get a second hand set either free or much cheaper. If something had miraculously cured me and I was able to work etc I would have been happy to pass on the pack free to help someone else and you don't tend to see anyone offering this but they do come up for sale secondhand now and again. 

B x

I'm hypovolaemic, vasoconstricted, and BP tends to run normal/high. I couldn't tolerate florinef - increased vasoconstriction and BP also killer headaches and palpitations (probably from potassium dropping). 

Vasoconstriction can be a physiological response to low volume (which I suspect to be the case with me), and in theory florinef looked a good fit for me as I produce no renin or aldosterone, but it basically has 2 actions - one to retain salt and water (good if you have low blood volume) AND enhanced vasoconstriction (bad if you are already vasoconstricted and high BP). Unfortunately the latter effect was more prominent in me.

Not everyone is the same though and your doctor may be able to explain the rationale for this prescription for you. Also, some people combine florinef with a vasodilator like clonidine so there may be options for you to mitigate this side effect if it does have positive benefits for you. 

B x

1 hour ago, Potsie1990 said:

Gave me horrific sleep paralysis. Like horrific. I will never touch the drug again.

That's really scary!

Did you take it before or after developing POTS?

B x

17 hours ago, Steph2397 said:

I went to a brain center in Orlando.

Would you mind sharing the details of the centre? I am always interested to learn more about novel therapies and although I would not be able to go there physically or financially I would love to read about what they are using. Others on here may also find the details helpful.

B x

12 hours ago, StayAtHomeMom said:

If you have vasoconstrictor problems have you tried a dilator?

Yes I have tried clonidine and doxazosin - both put me on the floor😖 I think in my case vasoconstriction is actually a physiological response to volume depletion rather than the primary pathology, as when I am feeling better I am less pale and cold, and my BP is lower. 

12 hours ago, StayAtHomeMom said:

The only one I can think of is alcohol. And I recall someone telling me a glass of red wine a day can help up your blood volume

I've not been able to tolerate alcohol at all since developing POTS. It is a diuretic as well as a vasodilator and often features in lists of what to avoid if you have POTS, but then I have read a few posts from people who have found alcohol helps them. I think it is an individual choice - if something helps you but is "unhealthy" I wouldn't judge anyone for taking what relief they can get. I too do not want to live decades like this and would choose quality of life over quantity.

I'm also not positive all the salt we hoover will prove to be harmless in the long term. There just aren't any scientific studies as yet relating to the cardiovascular effects in people with dysautonomia chronically consuming many times the usual daily recommended level of salt as a treatment.

12 hours ago, StayAtHomeMom said:

BTW if you have never smoked I would get the low nicotine doses. Smokers develop a tolerance and can handle a lot more nicotine than the average person. I think 0.6% is as low as it goes. 1.8% is roughly the strength of a regular cigarette. Just as an FYI. 

 That is a very useful point. If I did decide to try a nicotine product I would definitely choose the lowest strength. 

B x

On 9/17/2018 at 5:11 AM, Potsie1990 said:

And to report back on my Vape test. 

I vaped a few times all day, About half a cartridge. Used the Vuse Ciro Melon. 

FELT GREAT!!! Holy crap. Hit 119/80.

Wow that is so great! It is a shame it came from something with potentially harmful effects, but equally people have had strokes on midodrine and life threatening arrhythmias from low potassium on florinef so even pharmaceutical drugs are not free of risks. 

I looked up Vuse and it doesn't seem to be sold in the UK, but there are similar products. Do you know what percent of nicotine it contains?

I am tempted to give one a try even if just to cross it off as an option as I would hate for there to be something out there that could have really helped me that I didn't try. Cherry flavour sounds particularly appealing and not at all stinky like cigarettes. I however do not have low BP and seem to be intensely vasoconstricted to begin with so nicotine doesn't sound as if it would be as great a fit for me, but what exactly about dysautonomia is logical or predictable??!

The only other thing that really helped me was licorice root, again not a prescription medicine but a herb. 

Have you used it again and found the positive effects consistent?

B x

Personally if I were lucky enough to ever recover from POTS I wouldn't risk touching anything with a track record for exacerbating your symptoms. I can't tolerate caffeine at all since developing POTS, and even when I was healthy coffee used to have a strong diuretic action for me. Caffeine is a known diuretic. Some people do seem to benefit from caffeine as it is also a vasoconstrictor and can raise BP which is helpful for some dysautonomic types - we are all very different - but I think I would be wary if you are someone who hasn't done great with it in the past. I drink lovely green mint tea nowadays which is caffeine free and I don't miss caffeine. There are some great caffeine free alternatives. I was also never much of an alcohol drinker prior to POTS and also cannot tolerate that at all now either. 

My POTS was triggered by blowing up a water bomb which I thought was a balloon, i.e. a very forceful valsalva. If I recovered, I wouldn't even risk blowing a whistle or candles on a cake:)) !

B x

On 9/17/2018 at 3:26 AM, KiminOrlando said:

It didn't help my POTS at all and I gained weight so fast

Thanks for the info, I'm sorry to hear it didn't work out for you Kim. I am possibly more hyperadrenergic but hopeful that it might be the ticket. I lost a lot of weight rapidly when I developed POTS & struggle to eat enough and keep my weight up, also lost a lot of muscle since becoming so sedentary  but wouldn't want to blow up like a balloon without any benefit. I'll give it a go when I can get some hopefully in the next few weeks and report back either way, in case it is of interest to anyone else.

B x

2 hours ago, MomtoGiuliana said:

@bombsh3ll--do you take a beta blocker?

I can't tolerate any beta blockers unfortunately as I am already presyncopal all the time and they make me worse. Beta blockers reduce cardiac output and cerebral blood flow (even in healthy people) which is exactly the opposite of what I am looking for. Yes they reduce the chest pain, pounding heart and non psychogenic sense of anxiety but being unconscious or having to lie flat all the time isn't a worthwhile trade off for me. There is a lot of evidence to show they are cardioprotective in many different cardiac disorders though for those who can tolerate them.

22 hours ago, Jan said:

How are our high heart rates different from an aerobic work out?  I like to just pretend standing up is my workout.  

I love that idea! Sadly though I think the difference is that when an athlete or healthy person is exercising, a large amount of blood is returned to the heart (preload) which fills and stretches the heart muscle before it gets expelled in the next heartbeat. When we stand up, too little blood comes back to our hearts so they are frantically pumping away half empty and not getting that nice stretch which builds heart muscle. 

B x

Frequent concern here too - not so much the high HR as for me that is situational and not at rest, but the heart constantly being flogged by high levels of catecholamines and pumping against what I feel in my case is high resistance.

I guess only time will tell. I've had it for over 4 years now and may get another echo soon. 

B x

I'm lightheaded all the time with normal HR and BP. Peripheral measurements like these have a place but are not a surrogate for either cardiac output or cerebral blood flow. I have had to (re)educate more than one specialist about the basic principles of circulatory physiology.  Two patients can have the same BP and HR but massively different levels of cardiac output as BP is a product of cardiac output and systemic vascular resistance. This is what I think the problem is with me - low CO and high SVR. You mention being on propranolol which does actually lower cardiac output and raise vascular resistance - maybe have a discussion with your cardiologist along these lines. 

I would think very carefully about having a CT in the region of your head - it is a lot of radiation for a problem I'm guessing you probably didn't have before the onset of dysautonomia. The key question is how the results would change your management, if at all. 

B x

Having exhausted most of the traditional options I am currently looking into the possibility of pregabalin (Lyrica). The combination of dampening down overactive sympathetic tone, pain relief, insomnia treatment plus the possible bonus side effect of fluid retention sounds extremely appealing as a POTS drug. I also came across some positive research into its use in the context of dysautonomia due to Guillain-Barre syndrome in controlling adrenergic storms and labile BP. 

Has anyone with POTS/OI tried this drug and how did you find it?

B x

I too would be lighting up a cigarette right now if I thought it would help. I've never smoked in my life, but I've always said I'd rather have cancer than POTS - cancer has a >50% cure rate, so much care, medical research and understanding from both people generally and the medical community, and the chance to enjoy whatever time you have left than being presyncopal all the time and unable to stand up.

I would love to hear from any non-smokers who have tried either a cigarette, patch or gum and found it helpful or not? Personally I don't do well with vasoconstrictors - I am already intensely vasoconstricted so I understand we may not all have the same pathophysiology but people's experiences would be really interesting. 

B x

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

5 minutes ago, andybonse said:

I wish I was well enough to study medicine!

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. 

6 minutes ago, andybonse said:

While I was waiting to see my autonomic specialist there was a girl waiting to see him too, she had a PIC line, so I assume POTS and somehow got the saline maybe here in the UK!

I would love to know where she got that. Prof Matthias' clinic informed me outright that he doesn't treat with IV fluids

8 minutes ago, andybonse said:

I went to get a blood draw from someone private in her own home, she is a trained phlebotomist, it was £60. She also centrifuged it there and then. It is in a place called Henley on Thames, I can get you her info if it's close to you?

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.

10 minutes ago, andybonse said:

Does gulping water, squeezing something or sneezing make you feel better at all for a very small amount of time?

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

14 hours ago, Pistol said:

regarding your question about cerebral vasoconstriction: I have hyperPOTS with episodes of severe vasoconstriction caused by sympathetic overcompensation. When I get this then I get the following symptoms: cold hands/feet, chills, tremors, excessive yawning, confusion,

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

2 hours ago, andybonse said:

With your over cerebral vasoconstriction, what are your symptoms?

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