bombsh3ll

Magnesium is good but can make us feel worse in two ways - one is if it causes diarrhoea which can be dehydrating, the second is because it has vasodilating properties which lowers BP. I take just under half a teaspoon of magnesium citrate at night when I am going to bed anyway. I wouldn't take it in the daytime. I tend to be constipated so the mild laxative effect is beneficial for me. It has also been reported to help with sleep but this hasn't been noticeable for me. B x

I love that, might get one myself! B x

The HR increment in POTS is technically supposed to be sustained however yours never really drops down to that of a normal person in upright position, and tilt findings are not always reproducible on different days in the same patient. I personally (and generally speaking the better specialists seem to agree) believe that symptoms are more important than numbers. If that is your standing heart rate and you feel well, then great you don't have an illness, on the other hand if you don't quite meet the criteria for POTS but have significant symptoms which I presume you do to be having a TTT, then that warrants treatment regardless of the numbers. You can have orthostatic intolerance without POTS. The heart rate cut off has to be somewhere and 30bpm is just an arbitrarily agreed consensus. B x

I have severe POTS/OI and have pretty much exhausted all non-controlled drug options with either no benefit or severe side effects (and still no benefit). The only thing left to try which I have seen good evidence for in studies is Ritalin, however I have not found anyone in the UK willing to prescribe this for dysautonomia, either NHS or private. I have seen many patients on here who are currently or have been previously prescribed Ritalin, and would be really grateful if any of you could share who your doctor is. I am currently looking into the possibility of travelling to see Dr Grubb or Dr Blitshteyn in the US but would love to hear about any other options (in any country). I only want to try it, and think if it worked I would then have a much easier time getting it prescribed here if they could see it significantly helped me. I know Dr Grubb has a long waiting list (which I recently registered to join), and am unsure whether Dr Blitshteyn actually prescribes medication or not. Many thanks, B x

I tried it and it did nothing for me - my diagnosis is POTS, type unknown as UK doesn't attempt to determine underlying pathology but I do have hypermobile EDS which could be a factor. It did have a slight laxative effect (I am prone to constipation) but I have better laxatives which I get free on the NHS but have to buy any drugs to do with POTS myself, so was not worth continuing with just for this. I do not have low BP, I am looking for help with presyncope/lightheadedness/orthostatic intolerance. It did not seem to change my BP either way. On the plus side, I am generally very sensitive to medications like many POTS patients (I suspect this is due to low blood volume ie the same amount of a drug is distributed within a lower volume of extracellular fluid hence probably higher blood concentrations), but pyridostigmine did not have any negative effects at all for me. It is a short acting agent not something that builds in your system over weeks so once you reach your maximum prescribed dose you should see pretty quick whether it is doing anything for you, and if not it can be stopped straight away without having to be weaned down. B x

That's interesting. I am also not a believer in medication being prescribed just to make a patient's numbers look better, in this case to lower HR. Tachycardia is a physiological response to a diminished stroke volume, so suppressing that can be unhelpful and make matters worse. What did your daughter take to lower HR? I think beta blockers are the worst for this as they reduce the strength of contraction of the heart, further lowering cardiac output. For me HR doesn't really seem to correlate with how I feel - I am lightheaded whether it is high, low or normal. I did once try midodrine (although my BP is not low, thought it was worth ago to help any pooling) and that reflexively dropped my HR below 40 - that really did feel awful! B x

Yep I have exactly the same, we sound v similar! Normal numbers but still lightheaded (presyncope NOT dizziness/vertigo) all the time except when lying down/reclined. I would really like to hear what your specialist thinks/suggests for this. Cerebral vasoconstriction is a possibility (I wish we could get doppler/spect scans for this in the UK) but I also suspect low cardiac output. This cannot be calculated from HR or BP, stroke volume also needs to be known. CO increases by about 2 litres when we lie down. The brain gets about 15% of CO so I think my brain is simply getting 15% of a too low amount. Also, low cardiac output increases sympathetic tone - which can constrict cerebral vessels! Best wishes with your appointment, B x

Wow that is really helpful thanks, I've just sent them an enquiry about this. I have been trying to exercise by myself since becoming unwell but would really like some professional guidance from somebody familiar with orthostatic problems. B x

I wear a HR watch (Polar, with a chest strap - I haven't found wrist monitors accurate) most of the time, but when I am "exercising" (or doing anything really) I go more by how I feel than my HR. I don't always find that my HR/BP correlate very well with how I feel, for example I can be sitting with perfect numbers and be extremely lightheaded. When I get on my treadmill to walk (speed of 5km/hour), my HR will be about 100-110 but walking is much harder for me because it is upright than pedaling my recumbent bike, when my HR can be up to 140 but because I am sat leaning back it is "good" tachycardia ie what a healthy person exercising would experience and I find that a lot easier and more sustainable for longer. So my vote would be go with how you feel and if your body is screaming stop but your HR monitor thinks everything is dandy then listen to your body primarily! On the other hand just to be safe you could set a maximum HR that you feel comfortable with or your doctor if you have a decent one advises or look at age based charts etc and slow down/stop if you hit that limit. One of my older Polars used to beep if my HR went above about 122 - I had to climb steps to get into my son's school for parents evening once and it went off the entire time I was speaking to the teacher! B x

I have normal to high BP and a diagnosis of H-EDS so it is possible that upright venous pooling is a contributor to my OI. I don't buy that it is the sole cause as poor collagen is lifelong whereas POTS onset for me was instantaneous, however I cannot dismiss the venous pooling theory outright. I have long wished I could find something that would selectively work to constrict just veins, unlike midodrine which sent my BP rocketing and reflexively decreased my heart rate below 40. I wear the class 2 tights, but they are not highly effective. Well today I came across MPFF. I figured I'd give it a go! The brand I bought is called Venalex but it is sold under different names around the world. Anyone tried this? I did once get some Butcher's Broom but quickly ditched it after several days of no benefit and the discovery that it had diuretic properties. B x

That is great, I would definitely continue with that, as many times a day as you can! I can sometimes manage 10-15 min on my treadmill in the evenings as that is when I am at my best after fluid and electrolyte loading all day. I am not able to do it earlier in the day though. I also bought a recumbent exercise bike and use that for up to 30 mins most evenings to maintain muscle strength in my legs and heart. It hasn't helped me but it may have stopped me from becoming worse than I am. It is great that you have access to an exercise physiologist familiar with POTS - there is nothing like that in the UK, you are basically on your own. Sorry it is a long wait though. I and am sure many others would love to hear what they have you doing when you get there, please do post about it! B x

That's really good to know thanks! It is a med I may like to revisit if I could get it prescribed and monitored properly. When I did try it, I wasn't any more able to be upright unfortunately but I did get a better night's sleep without having to pee, and felt less dehydrated in the mornings. B x

I feel that in my case not having any effective treatment has made things worse over the 4 years I have been unwell due to deconditioning. If you are able to get treatment that lets you be on your feet and active, that in turn helps lessen symptoms in the long run. If you are very symptomatic and do not have any help, you lose muscle tone, blood volume and heart muscle mass. I have tried a number of treatments that either didn't work or lost effect after a while, but for me there was a long delay in accessing any treatment at all by which time I had already lost a lot of ground (I was not an athlete but was physically fit before sudden onset.) My advice is keep pushing for appointments and treatment and keep moving as much as you are able. B x

When I first became ill with POTS I did a lot of reading online and convinced myself I had gastroparesis as well. I've had lifelong reflux and slow motility for which I take medication long before POTS, probably also due to EDS, but time has shown that in my case it is likely to be simply that the nausea & dislike of eating that struck at the same time is related to cerebral hypoperfusion, weight loss was due to the hyperadrenergic state & loss of muscle tone due to suddenly becoming chairbound, & worsened motility due to no longer being active, rather than anything new or worse going on with my GI tract. B x

I take 0.1 mg once a day, the tablets--the smallest dose, I think. It's worked very well. Thanks for the reply, do you take it at night? Do you have to restrict your fluid intake on it - i would struggle with that - and get regular blood tests to check your sodium isn't dropping? B x

Thanks yes my normal resting HR is about that although most of today its been 70-80's. My HR is very reactive to movement. I also get a lot of ectopic beats however maybe we just feel them more with a slow HR and not so much during tachycardia. It is really encouraging that the lightheadedness is lessening for you, if I could get rid of that I'd be champion! I would definitely break the smallest dose into a quarter and make sure my family are around when I take it. I am currently going through the disability process and need to be able to reasonably show that I've tried everything but equally if a medicine is contraindicated then that's OK. I just don't want to miss the chance that something might have helped and I didn't try it. B x

Midodrine is short acting so it is out of your system after about 4hrs, just don't take it close to bedtime. Oh and it caused my heart rate to fall below 40 - it commonly lowers HR via vagal reflex. It wasn't what I needed but it may work our great for you! B x

Hi, looking for peoples' experiences with Ivabradine, all info welcome good or bad but particularly anyone whose resting HR is not typically high. My resting HR can be in the 50-60's seated particularly in colder temps and/or with legs elevated (yet still feel lightheaded and rubbish - BP normal too). I have heard great things about this med but have opted against it in the past due to concerns about bradycardia. If you have taken it, what was your typical resting HR prior to and after taking it, and was it beneficial for symptoms? If it caused any negative effects what were they? Also what did it help with specifically? My main issue is severe constant lightheadedness and inability to stand due to presyncope. Relief from the chest pain and sense of high adrenaline/non psychogenic anxiety would also be good. I don't tolerate beta blockers. I am not concerned about tachycardia per se - my heart rate has only ever been checked because I feel unwell, and I wouldn't be bothered simply about a fast HR on standing if I wasn't presyncopal. Many thanks, B x

Me neither, what dose of DDAVP do you take? B x

I have POTS and since then have been diagnosed with HEDS after putting together a collection of previous medical/surgical issues & features associated with poor collagen over my lifetime. I saw a geneticist for the HEDS diagnosis and she definitely felt that dysautonomia was one of the features of EDS. The thing is whilst I understand that EDS can cause lax blood vessels and pooling (my dad has really bad varicose veins and an aortic aneurism), I am not sure this fully explains the orthostatic intolerance in my case as surely veins would gradually stretch out over time, whereas my POTS onset was extremely abrupt at age 34 & was triggered by a forceful Valsalva. I am also not sure how EDS could cause nerve damage (unless nerves are being stretched/pulled out of place by general tissue laxity). Also I have no other features of nerve damage such as weakness, numbness or neuropathic pain. B x

Quite right! I wholeheartedly agree with the advice to get on the waiting list for a specialist in dysautonomia. Yes there is a small chance you might strike lucky with a doctor in your local area but a much greater chance that you will get either poor care, no care, or treatment that harms you (including being dismissed and ridiculed not just the wrong meds). I am not entirely sure how the insurance system works in the US, but perhaps you could get on a waiting list now and still try local doctors in the meantime. If you did get lucky you could always cancel the specialist appointment but if not then you know you have something in the pipeline. I live in the UK and I fought for 3 years to get a diagnosis. I was diagnosed with POTS but even now after more than 4 years have no treatment other than those I have been able to source myself (I am a GP so have had better resources for obtaining medication than most). At this point I too am looking at travelling to see one of the US specialists. Best wishes whatever you decide on. B x

So far the only thing that ever helped me for the lightheadedness was licorice root capsules. They were miraculously effective for about a year but then gradually stopped working. I've never found anything else (other than lying down!) which helps but am eternally on the lookout. One thing that massively WORSENED the lightheadedness for me though was beta blockers (these reduce cardiac output and cerebral blood flow, even in healthy people). Heart rate control isn't appropriate for me as my resting heart rate awake can be around 50bpm, but if you do need or want a med to slow down your HR, it may be worth looking into Ivabradine as an alternative to the beta blocker as this doesn't reduce BP or cardiac output. B x

How on earth and where did you get a central line agreed in the UK? NHS or private I would be really grateful if you could share details. B x

Exactly - this is consistent with what happens in phaeochromocytoma (another condition of excess catecholamines) - reduced blood volume and often polyuria. B x

Is the objective not to get the catecholamines done at the same time as your TTT so that levels can be drawn supine and upright? That is what I am waiting to get done. Regarding meds affecting results, antihistamines will not, but beta blockers used chronically tend to lead to elevated catecholamines (as the body tries to overcome the receptor blockade). I am not sure how long you would need to be off the beta blocker for your levels to revert back to your own personal "normal", but maybe this is something you could search relevant research articles on online if you want the test to be the most accurate reflection of your physiology. I suspect it may be longer than the period for the drug to simply be out of your body. Best wishes, B x