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Hi Lavender90, I have hyper-pots type symptoms and BP that goes up on standing but normal neurotransmitters on the tilt. Mestinon didn't help my orthostatic intolerance & lightheadedness either in terms of symptoms (to be honest I didn't really monitor HR/BP on it but I am more concerned with how I feel than numbers as long as nothing is dangerously off). It did significantly help with my sluggish bowel motility which is lifelong not changed by POTS, however I have other laxatives for that so didn't continue with it. I'm sorry it didn't help for you, but at least you have tried it and can cross it off. That is better than not trying something and potentially missing out on a good treatment. B xxx

Thanks, I had assumed it was an electrolyte type drink from it being recommended so often in POTS/hypovolaemia, but if that's not the case & it is just another brand of sugary drink I don't think I'll bother with the high shipping costs! B xxx

No, I can see that being a logical step but I have no breathing symptoms and I don't really fit the clinical picture or the demographic. It doesn't always necessarily wake me from sleep either, I can wake spontaneously as I'm a light sleeper, feel OK for a couple of seconds then feel my heart start pounding & it kicks off. Also I don't think I could ever sleep with a CPAP machine! B xxx

Do you think it could be related to your lap band at all? Did it coincide with removal? I always loved that omeprazole let me eat what I wanted, curry, onions, fruit juice etc. I never really drank much alcohol when I was healthy anyway, but with dysautonomia, even without stomach problems, it doesn't go well! Depends who is paying for it - NHS it is the bare minimum, looks normal, no cancer, no bleeding, no ulcer, done! B xxx

I had one several years ago at POTS onset as I lost a lot of weight, but I don't think the H.Pylori test was done. Th best I have is the stool test if I could manage on just ranitidine and gaviscon for the two weeks prior. I've heard the bad press, but for me it isn't optional, I'm in severe pain if I forget just one. I do supplement B's, and thanks to POTS I don't get much use out of my hips anyway! It's the lesser of two evils. Also untreated reflux can increase risk of oesophageal cancer over years and I've had it since childhood so there is an upside. B xxx

That's a really fascinating article Jim. I have to be honest I've never really thought much of old H.Pylori given about 50% of us have it and its presence/eradication seem to correlate poorly with symptoms, but I've never actually been tested myself. I've been on Omeprazole for about 20 years for reflux. I don't know how I'd be off it for the required 2 weeks for the test though! (Here it is done by stool sample in the community, we used to have a blood test for which they didn't need to stop PPI, but it is no longer available). B xxx

I would love to try this Gatorade, we don't have it in the UK! I drink trioral for my electrolytes but it doesn't taste nice, would like to mix it up a bit! Sugar is also in trioral- it is made according to the WHO Oral Rehydration Solution recipe- the sugar facilitates uptake of sodium. B xxx

I'm so sorry you're struggling Lee. Welcome to the forum. Which country are you in? Have you had a urine catecholamine test to exclude a pheochromocytoma? I got one of these pretty quickly following a visit to A&E with very high BP. Do you have a blood pressure machine to see what your heart rate and blood pressure are? I would start keeping a symptom/BP/HR log if you are not already doing to show the cardiologist. Also I have found that being persistent, calling the waiting list secretary and also seeing if there is a cancellation list you can get on are helpful in being seen as soon as possible. B xxx

That is my experience too, so I will be very interested to hear if you find anything. What is frustrating for me is that my numbers can be fine and do not necessarily correlate with severe symptoms. I believe for me it is low cardiac output secondary to hypovolaemia, sympathetic system compensates giving you a normal or high BP, normal HR when sitting. I demonstrated POTS on the table but it wasn't massive like some people's although my resting HR is low. The technician made a comment to me like some people have a heart rate in the 150's or 170's yet they function upright. That didn't make me feel great, & I was too ill to explain the unmeasured variables of cardiac output & cerebral blood flow. They matter! Hope you get your results soon Derek. B xxx

I have nocturnal "panic attack" like episodes too, in fact I was awake most of last night. It's a horrible feeling. It can happen even if I've gone to bed feeling calm and happy. It is like an inexplicable physical sense of dread. I have a fitbit and it shows the spikes in my HR and me waking up at the corresponding times. I never slept well, even when healthy, but I have definitely only had these since POTS. B xxx

Hi Masha, I know it sounds great but I would be very wary of their claims. I have not personally been there but have read a lot of experiences from those who have. Basically it is all just biofeedback, meditation, exercise & they also recommend some supplements including licorice root. I'm not saying none of those things can be helpful, especially the latter which gave me a life back for about a year, something no drug has, just that it doesn't warrant the expense or the travel involved to access the package. The bio device they recommend is heartmath, which you can purchase yourself online with full instructions. Also, given the dramatic and instantaneous result I had with licorice root, which expands plasma volume (short term), someone could go there and think the whole thing miraculous when really it is just these inexpensive little capsules alone (the brand I used was Swanson). Best wishes, B xxx

That's exactly how I was when I had mine in Feb. I really thought my blood levels would show a hyperadrenergic picture, but they were actually normal in both positions! I was frustrated as I was looking for something to treat. Too low catecholamines, there is midodrine and droxidopa, too high and there is clonidine, alpha & beta blockers etc, but nothing in between! I hope you gain some info that leads to a helpful treatment, please keep us posted with your results. B xxx

Yes you are right, an older and slightly gentler acid suppressing med for that period of time should really have made at least some dent if your symptoms were reflux. Some people (I am one of them) do not find the zantac family effective enough to eliminate reflux symptoms, but for a first time user without a diagnosis it is certainly a reasonable trial. Have you had a basic peak flow test at your GP surgery? That can also give a clue re asthma. People also sometimes get a peak flow meter and diary to take their own readings twice daily, as asthma shows diurnal variation. Also have you been offered a trial of an inhaler at all? Regarding gallstones, whilst no imaging is infallible, if you have normal liver function tests and a normal ultrasound scan, I would be reassured, especially if you are a normal weight and have no history of gallstones. I hope you manage to get some answers. Waiting for endless tests and appointments is rotten! How about Dr Gall, have you seen him yet? B xxx

Glad your head is a bit better. Those symptoms could def be coming from your neck. I hope you manage to find some relief. B xxx

Hi Erica, Welcome, I'm sorry your son is having such a difficult time. He is lucky to have you caring about him. Whilst it is utterly miserable to live this, I would not expect the burping to have a sinister cause - it is very likely caused by his eating position. I am lucky that I can sit up to eat (although it makes me very lightheaded and I have come to really dislike eating since POTS), but when I was healthy & in hospital after having my daughter, I was very swollen down below, such that I couldn't sit up to eat, and can relate to swallowing a lot of air like that as it is such an unnatural position to eat in. Does he have any other symptoms of, or a diagnosis of MCAS, like rashes, itching, hives, wheezing, flushing etc? If he doesn't then I wouldn't think the burping alone (given he eats lying down) is suggestive of it. Are you able to tilt his bed at all so that he is angled slightly upwards? It may just help. It is certainly worth trying any medication offered though. Also what about smoothies/protein shakes - they are easier to manage and may be less of a problem re air swallowing as he can drink them through a straw or sports cup/bottle & no chewing. Best wishes, B xxx

I have a diagnosis of hypermobile EDS and am currently investigating the possibility of craniocervical instability. The symptoms you are describing, especially upon turning your head are consistent with this possibility (although there are also many other potential causes). I do not get most of these symptoms, I have severe POTS/OI and headaches, but many if not most people with this syndrome do have the neurological type issues that you do. It may be worth reading about craniocervical instability and seeing if you think this may fit you. If it is something you feel you should pursue, it requires upright MRI scans, which unfortunately are not offered by the NHS but can be done privately in London, Manchester and possibly Leeds. You then send your images to a neurosurgeon who specializes in these disorders. I have been dealing with Dr Gilete in Barcelona. Best wishes, B xxx

That's beautiful! Amber and Hannah are blessed to have their special relationship. I would love a service animal too as I am alone most of the day and faint but I don't have the space & feel it would be an extra burden for my family to walk and care for. B xxx

That's beautiful! Amber and Hannah are blessed to have their special relationship. I would love a service animal too as I am alone most of the day and faint but I don't have the space & feel it would be an extra burden for my family to walk and care for. B xxx

Thanks, I don't either, it doesn't represent real life physiology. I wouldn't be able to get the tests again on the NHS, & tbh it wouldn't help me access IV fluids as these are only available privately anyway. I was still highly symptomatic despite my licorice, fluids, dpam and compression so the results may not have been that far off what is "normal" for me. I am now off the licorice as it was no longer helping my symptoms and was making me hypertensive. Now, my bp is on the low side and rises to normal levels standing, yet I am still presyncopal. What I would really like is to have my blood volume properly measured, to prove once and for all I am hypovolaemic, but that isn't available in the UK. B xxx

I am updating this with the results of my catecholamine tests - surprisingly they were completely normal supine and also rose normally during 10 mins of 60 degree tilt (nearly double). The tilted level was about 465pmol/l so nowhere near the 600 that is commonly used to define hyperadrenergic POTS. I certainly feel hyperadrenergic - chest pain, non psychogenic anxiety, tremulousness, clammy hands, BP rise etc, but by blood results am not. My test results could have been skewed by the fact that I was still taking licorice root at the time, also I had fluid loaded as usual with a litre of ORS on waking, taken 5mg diazepam and was allowed to keep my waist high compression on for the tilt. These were agreed in order for me to have the best chance of lasting 10 minutes on the tilt, as before then is not worth repeating the blood sampling to detect a rise. The AChR antibody was also negative which I expected. I have no evidence of neuropathy. So I remain without a definitive type, although strongly suspect hypovolaemia. B xxx

I'm so sorry you're going through this Derek. If it is any consolation I haven't had a shower in nearly 5 years either, except in hospital where they had a seat. I only have baths so I can be sitting/lying, and go straight to sit on the toilet with the window open afterwards. It is rotten how we can feel so faint and lightheaded and yet the BP is high. Midodrine is a vasoconstrictor and didn't help me either. As Pistol mentioned, the pins & needles/stroke like sensations are absolutely a side effect of it - I referred to it as a "stroke in a box". Perhaps it isn't the best med for you either - at the least I would suggest checking your BP first if you are considering taking it again, because in the beginning I would assume mine was low as I felt so faint, yet it was actually high. And yes Diazepam (another benzodiazepine) helps me too. I do not have any psychological disorder other than the natural sadness and worry that this condition brings, but it does help calm an overactive sympathetic response. B xxx

The neurosurgeon lifts the skull up and fixes it in its proper place above the first 2 cervical vertebrae. In the case of cranial settling, this relieves the pressure on the brainstem where the centres controlling fluid balance and autonomic function are located. This procedure has cured a number of people of POTS. It doesn't help everybody though and is obviously only indicated if you have cranial settling, which tends to occur in EDS and possibly other connective tissue disorders. The neurologist I saw feels the scan I had picks up 80%, and definitely any big ones. I have no signs of cranial fluid loss, the concern for me was spinal. As the next investigative step would involve a lumbar puncture I don't think I would pursue this as these can be notoriously difficult to heal in EDS and can actually leave you with a(nother) leak. I am glad I had this scan though. It is very possible for orthostatic headaches to occur in POTS in the absence of a leak, as a result of cerebral hypoperfusion. They can also be a symptom of cranial settling but again my scan reports for this are a bit ambiguous. There are also usually additional motor symptoms such as weakness, numbess and choking with cranial settling. B xxx

Please make sure you arrange a blood test locally within the next few days, especially if you aren't just taking it at bedtime. It really can cause serious problems very quickly, particularly if you tend towards hyponatraemia to begin with. If you end up with a very low sodium, not only is this dangerous but it could lead to the loss of a potentially helpful drug as nobody will be willing to prescribe it again. Taking extra salt and/or a tiny dose of florinef if you can tolerate/have access to it may protect your sodium levels on it but this is something to work out with your doctor and with regular blood tests. I know you didn't get on with florinef before but you wouldn't be using it for its own benefits, this would be using it to negate the hyponatraemic effects of the desmopressin. B xxx

I found myself with a device like this pumping away on my legs when I woke up after having my daughter. It was quite bizarre and reminded me a bit of a cow being milked, but not uncomfortable unless trying to sleep. (I was healthy then). It isn't something you could walk around in, but then if you could you wouldn't need one. B xxx

I find my compression tights slide on a lot easier with a knee high liner, especially if I put them on inside out (they seem to be shinier on the outside). The knee high I wear is Activa class 2, and the tights are Sigvaris class 2. To be honest I don't notice significant benefit from compression but wouldn't be without them as they may help just a little. My BP was never low though (until I came off licorice). B xxx