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I have been having increasing problems with bladder emptying. I've had what seemed to be hormonal/cycle related problems with emptying for quite a while, but now I'm finding I'm having problems throughout the month. The thing is, I don't know whether the problems are likely to be autonomic or simply down to my advancing age (46) and having had three babies. I find that when I go to the toilet, I pass urine, feel like it's stopped, then when I stand up more floods out and I don't feel it happening. It's usually a reasonably small amount, but for the past few days it's been considerably more. I have tried double voiding (leaning forward, etc) to try and make sure I completely void and that worked for a while, but doesn't seem to help at the moment. Didn't help that it happened just as an enormous spider showed up in the room this morning. I stood up, thinking I was done, and flooded my underwear and jeans and didn't even realise until I went to pull them up. Then had to try and extricate myself from my clothes and remove the spider whilst trying my hardest not to flash the neighbours! That was the final straw and I decided I need to talk to someone about this. Does this sound like an autonomic/neuropathy like issue or do you think it's more likely typical female/childbirth related incontinence. (If it helps I have never had any bladder problems, not even minor leaking or urgency, even postnatally and had my last baby almost 8 years ago. Historically I have always been able to go a long time between toilet trips, even when drinking a lot. These days I don't have any urgency, never get caught short and am not a overly-frequent toilet visitor, I just have this problem, after I've voided.) Any thoughts?

Hi, I have POTS, CRPS and EDS (hypermobile type) and coincidentally, happen to be exactly the same age as you ... and am fairly new to the forum myself. More recently I have started having digestive and voiding issues, both of whice seem quite common, from what I've read online and seen on here. I haven't any useful advice I'm afraid, as I'm really brain fogged today, but have found the lovely folks on here so kind, helpful and supportive and as corina said, it's sometimes good just to know that you're not alone.

I've been on it for about a month and a half (although I am in the UK and it's called Procorolan here) and have had almost no side effects, other than some minor visual sparkles and occasional brightness, neither of which are even bad enough to affect driving. I'm so sorry to hear you are having such problems on it. My EP did say that some people need a tiny dose. I started on 2.5 mg once a day for a month and am now on 2.5 twice daily. I was told it's recommended to start on a very low dose so your body gets used to the drug before they put you onto the therapeutic dose. I haven't noticed much change in my heart rate yet, it still gets up to 120/30 on rising and I still get lots of ectopics and palpitations, but am definitely having less sob and chest pain since I've been on it (I had both really badly before) and I generally have more energy and stamina. I have also found my brain fog isn't as bad and I sleep better and have fewer of my weird night-episodes - which of course may be helping reduce the brain fog. I assume my EP won't want to titrate it up any further, as my resting heart rate is already in the low 50's to low 60's depending on when I test it. Most of his pots patients are on 2.5 mg x 2 or less and the majority have found that helps. Can you keep a diary of symptoms and discuss them with your doctor? Just wondering if you might be able to identify a pattern. Could the burning possibly be acid related? I know I have found it difficult to distinguish between chest and stomach pain when I've had severe acid problems and when I developed chronic gastritis it felt like a combination of burning and chest pressure. I would definitely contact your doctor to discuss it though, as you are supposed to be closely monitored and report any side-effects when you first start taking it.

Amyschi - I am 47, so not all that far behind you. I seem to be starting to get some relief after starting Ivabradine - only went onto a therapeutic dose this week, so very early days, but today has been the best day I've had in a long time. Hope you are able to find something that will help you too.

Just updating again. If nothing else, it helps me to have a typed record of what's going, as my memory is hopeless. So, I've been on a very low dose of just 2.5 mg once a day, in the morning, for a month, all fine, no side-effects, but no effect on hr/symptoms either. Got the go ahead yesterday, from my EP, to up it to twice daily and picked up a new prescription today. Took my first morning and evening dose yesterday, not expecting much to happen and have had a really busy day today. While I was standing in the hospital, waiting for my prescription to arrive, I suddenly realised my symptoms hadn't kicked in yet, which made me stop, think and realise that I have actually had a pretty good day. It's now 3:00 in the afternoon where I am and I have yet to have anything over relatively mild symptoms. I am so relieved to not have had my face/head instantly covered in sweat the minute I stand up - and that's on quite a hot day - as that's been really bad for while now and was starting to become a real problem for me. It's early days and maybe I was just due a good day anyway, but I am daring to feel a little bit hopeful that I might finally have found something that will help me improve my quality of life. One thing I have noticed since starting the ivabradine just over a month ago, is that I am sleeping so much better and have had far fewer of my nasty night-episodes. Last night was my first 'evening' pill. When I woke this morning I realised I had slept right through the night and like a log, which is pretty much unheard of for me. Haven't a clue why ivabradine would have that effect, but will be very happy if it turns out to be a permanent, good side-effect, as it were.

My bp, particularly the diastolic, spikes when I stand up. I also get narrow pulse pressure, due the the diastolic rising faster than the systolic. We're currently not sure if it then drops too low just before I pass out or not, because my home bp monitor throws up an error and refuses to give a reading once I'm symptomatic. I've been told it's most likely the narrow pulse pressure that the monitor doesn't like. I generally have relatively low bp, usually around or just under 90 over somewhere between 50/60 and when I stand it shoots up to 120-30/110-15 ish, higher if I'm having a really bad day. Over the years I've had periods of relative wellness, times when I have good and bad days and times when I have good and bad weeks. The past four years it has got progressively worse, following a period of immobilisation for other reasons and good days have been rare enough to be memorable, iyswim. I used to think there was no rhyme or reason to it, but am gradually learning it often relates to stress levels, quality and amount of sleep, diet and hydration. When I have a very bad day out-of-the blue nowadays, I try to track back what I've done or eaten/drunk that was different and make a note, then if it happens again I can see a pattern emerge - which helps me learn how to manage it long-term.

I have lots of ectopics, which I think are the same thing. In fact I was talking to my cardiologist about them at my appointment this week. All my heart checks came back as normal and he says they're nothing to worry about, but yes, they feel horrible, especially when I get a run of them all together. I am learning to drive at the moment and had a proper flurry of them in the middle of my driving lesson this week, that was ... interesting. Fortunately they don't seem to affect me cognitively, they're just uncomfortable and a bit distracting. I'm in the UK too and that hot, humid weather we had was awful, not to mention all the thunderstorms which always affect me really badly. I'm definitely happier now things have cooled down a bit. The problem in the UK is that we're just not geared up for proper hot weather, so there aren't enough places with air-conditioning to hide. In the past, before my POTs got really bad I used to go and hang out in the fridge/freezer aisles of the supermarket. I'd rather shiver than overheat any day. I have three children and do understand what you're saying about the worry and guilt. My eldest has ASD, with hypotonia and hypermobility, middle one was diagnosed Joint Hypermobility Syndrome at the age of 8 and that causes him a lot of problems, pain and exhaustion. My youngest is very bendy, but super fit and <fingers crossed> as yet, not having any problems related to her hypermobile joints. My Mum, who's almost 70 has just found out she has EDS (about to go through genetic counselling to confirm which type) and has both mitral valve prolapse and aortic dilation. Both she and I worry and feel guilty about having passed on our problems to our children, but it is what it is and we try not to dwell on it, as it won't change anything. Maybe if we'd been diagnosed younger and known more about our health issues sooner we'd have made different choices in life, but that wasn't the way things worked out. If your son does turn out to have EDS, there's a chance he may not be negatively affected by it at all (I have two sisters and neither are affected, despite both being hypermobile and my daughter is showing no signs of problems as yet, whereas her brothers both clearly had issues at her age). As Katy said, by the time he's grown medicine/medical knowledge will have advanced and there may well me better, properly researched treatments available.

I have had root canals done without epi. My dentist is lovely and gives me a hand signal to tell him as soon as I feel anything and he tops it up. I am terrified of dental work but it has been fine, in fact I have to go back for some more work shortly (avoiding it at the moment, thanks to facial nerve pain that I could do without aggravating). I haven't noticed any ill effects from just the anaesthesia without epi, in fact people have commented on how quickly I seem to get over dental work, because they are left numb and dribbling for a good few hours after major work. Having said that, you may want to organise some decent pain relief for when you get home, as I would think it will still hurt for a while once the anaesthetic has worn off.

Thanks Katybug. Yes, I was quite shocked they actually took it seriously and took action for once. Different doctor though, so I suppose that's what made the real difference. I had my echo results this afternoon and was told it was all clear, normal and healthy.

Hi Saw my EP today. He's not concerned about the heart rate drops and thinks my oximeter is probably failing to pick up ectopics and dropped beats properly. He's started me on the lowest dose, just once a day, for a month. Hee's going to review it over the phone with me after three weeks and consider titrating up if it's going ok. I have to get all my prescriptions direc from the hospital and he's only allowed to write a script for one month at a time, so it's going to be a bit of a pain getting there to pick them up every time, as I don't drive and standing in bus queues isn't exactly a strong point of mine either, for obvious reasons. He's hopeful that if he monitors me on it himself for a few months and all goes well, he will be able to persuade my GP to agree to shared care and prescribing for me at that point. He has several patients on it at the moment and they have all found it helpful, so I am keeping everything crossed that the same will be true for me. We've tried beta blockers and they weren't for me, propanolol didn't do a thing and bisoprolol knocked me sideways, gave me lots of nasty side-effects and left me unable to get out of bed. This EP says he hasn't yet found a beta blocker that has been effective enough on the heart rate, without lowering blood pressure too much with his POTs patient and most have suffered from pretty evil side effects on them as well. I do have low volume, so maybe something to help with that might be an idea. Same problem with everything in the UK though - it's all off licence, which makes some doctors shy away from even trying things out. I will see how the ivabradine goes now I finally have it, but also do a bit of research into what else might help.

My mum has just been referred for genetic counselling and testing for EDS, as a result of them finding aortic dilation on her echo. She also has mitral valve prolapse. I was sent for an echo on the back of that (results next week) and have been told I should have one at annually from now on. I am hypermobile, without an EDS diagnosis, most probably hypermobile type though. My middle son has Joint Hypermobility Syndrome and is diagnosed and my mum's presentation fits most closely with Classical EDS. Myself and my children will all go through counselling testing if/when she gets her diagnosis, which will hopefully help us piece together a bit more of the puzzle.

Sorry for the late response. Thank you for replying. That's what worries me - that only the specialist centres/units are willing to stick their necks out and prescribe it. Although actually I have a prescription from my consultant EP now, but it turned out to be in response to my request for an interim prescription while my GP decided whether or not to she would be happy to do shared care. Unfortunately I've been told not to take it until I've spoken to him, as I have no monitoring in place and his secretary wasn't sure if he could give me repeat prescriptions via the hospital pharmacy. It's been months now, saw him last on 30th March and that's when he decided to prescribe. Finally got an appointment with him for next week, but am expecting him to decide against it now anyway, as my resting heart rate has dropped into the mid 50s and I am having dips as low as 47 bpm when lying in bed either early morning or before going to sleep. I've been so symptomatic the last couple of months, I'm really struggling to cope and was clinging to the hope that ivabradine might help. On top of everything else I've now got gastritis and haven't eaten anything but porridge made with water and zero fat yoghurt for a week and a half, between that, the migraines, facial pain, burning skin, numb hands and feet and my orthostatic symptoms getting a lot worse, plus all sorts of other weird and wonderful symptoms, I am exhausted and seriously fed up. Feels like I'm never going to get any real help.

Thank you, I will save it to read when my brain decides to start working again. Having a very bad morning today.

I have had a really busy, stressful couple of weeks and as usual, it's triggered a bad flare of lots of my symptoms, most of which I can deal with or know I just have to put up with until I they pass. Might help if my doctors would sort themselves out, but that's another story. One symptom that is really bothering me at the moment though is scalded skin/painful paresthesia. It comes in repetitive waves through my arms, legs and back and is so painful that actually I don't think paresthesia is even a good description of it - it's just the closest I could get to explaining it. I also get numb/fuzzy patches here and there along with it. I only tend to get it this badly when I am really run down and very low physically and I know I am running on empty at the moment. I've been flushing quite a bit too, so took a chance on trying an antihistamine yesterday and I 'think' it helped, at least to some degree. I have no idea whether or not I have mast cell issues, I don't know much about it, but I'd always assumed not, as I'm not a typically 'allergic' person, if you see what I mean. Now with the flushing and painful skin I'm beginning to wonder. Does anyone else get this and/or have any other ideas that might help reduce the pain of it. I can cope with normal paresthesia, if there is such a thing, as I've had it most of my adult life, but find the burning and stinging really hard to deal with. I should add that I also have complex regional pain syndrome in my left foot and lower leg (fortunately that's not flaring just at the moment) but the pain/burning of this parasthesia is a different kind of burning to the pain I get with that.

Hello, I am another newbie with a lifetime of pots, but only diagnosed recently - I am 46, so you have a head start on me. I can relate to so much of your story and am also currently having problems with my GP (General Practitioner - I'm in the UK) refusing to prescribe, even though she was asked to by my Electrophysiologist - who she referred me to! She doesn't want any involvement in prescribing or monitoring off-licence meds and seems to know very little, yet be unwilling to learn about pots. It's such a shame, as the first doctor I saw at my GP clinic was great, knew a bit about pots and wanted to learn more, but she was a registrar on rotation, so newly qualified, keen and still cared enough to want to learn how she could help her patients. I would say that the sleep study might be a good idea. I am just about to start pushing for one, as thanks to the lovely folks on here helping me unpick some stuff, I suspect I may have central sleep apnea. A headache diary is also a good idea. I suffer from several different types of migraine and am now experiencing some sort of facial pain as well. My migraines were diagnosed by a neurologist, with the help of a headache diary to work out what happened when and how and while I haven't been successful in finding a treatment that helps all of them, you might be more fortunate and able to find something that alleviates at least that aspect of your suffering. As shan said, so much of this is trial and error. What works for some of us doesn't for others and may actually make still others feel worse. It's a slow and frustrating process, but I am working on trying hard to stay positive. The diagnosis was the first big hurdle and if I have finally managed to get that after all these years (the earliest I remember passing out regularly and having regular pre-syncope was when I was 7 years old) then I have to believe I can find the right way for me to ameliorate the symptoms and snatch back a decent quality of life. Good luck with it all.

I use a fingertip oximeter and my sats are usually around 94, but regularly drop to 91/90 or 88/89. I definitely feel a correlation between when they're low and when I feel most symptomatic. If O2 drops and stays low I can struggle to feel properly conscious and find it hard to speak. My husband videoed this happening a few years ago, before I was diagnosed and that, along with some suspect MRI results, triggered a full Multiple Sclerosis work up - which was negative of course. I'm currently trying to find a suitable device to record my overnight hr and sats, so that I can produce records that will show me what's happening during my night episodes, but everything I've tried so far has had some sort of technical hitch/glitch to get over and I've had to give up and try something else. Next plan is a wrist oximeter with finger probe that can upload data to a laptop. My dr said as long as the readings don't stay low for prolonged periods of time then not to worry and also to bear in mind that hypovolemia will affect the accuracy of the readings in extremities. I also have issues with pulse strength. When I am so bad that my cognitive functions are really depleted, I find my O2 is low and my pulse strength is all over the place. The waveform on the oximeter goes from pretty much flatline to massive bounding peaks, then drops down and back up completely randomly. There's generally a steady rhythm (other than one or two anomalies I always have) but the O2 and pulse waveform are way off. I videoed this a few times and showed my internal medicine dr, who said it was more about the limitations of the equipment than anything that was going on with me, but I disagree, as I know how much worse I feel when this happens. I have yet to show the videos to my new EP, but will definitely do so next time I see him and see if he agrees with my old dr.

Plaster, thank you so much for your post. So sorry I haven't managed to get back here before, this week has just been ridiculous with my husband being away, my facial pain and other symptoms off the scale to my norm and lots of other stuff suddenly cropping up with my kids/school and even the dogs! Can't wait for the weekend to get here. I was on Bisoprolol, only at a very lose dose and it floored me completely. Constant diarrhoea, heart rate in the 40s and bp so low it wasn't recordable and when my dr told me to start taking it in the mornings (pharmacist advised evenings) I couldn't get out of bed for days on end without passing out. I also had dreadful cognitive issues and was totally exhausted the whole time I was on it. My EP took one look at me and took me straight off it. It's so reassuring to hear that you are doing well on Ivabradine even with a normally low resting heart rate. Mine is usually 62-64 when resting in the day, but drops into the 50's when I'm in bed. I easily get up to 175 just shuffling across the road to my daughter's school though and it would be lovely if I could actually start feeling strong enough to exercise. I really miss walking my dogs - we used to do 4-5 miles a day, but I can't walk them at all at the moment, so have to rely on my husband and other people to do it for me. I have finally managed to reach my EP's secretary and she is passing on a message to him for me. I have to wait for either him or her to call me back, but she said it may be a few days. The UK system is so silly, as my family doctor has refused to agree to shared-care and monitoring for the off-label use of Ivabradine, I now have to wait and see if the EP will be authorised to fund it from the hospital budget. I can't start the prescription I have, as he only wrote that as an interim prescription while I waited for my family doctor to make up her mind whether or not she was going to agree to the shared care (under which agreement her clinic would have joint-funded the prescriptions) and his secretary, agreed that I can't start taking it without someone medical being responsible for monitoring me while I'm on it. I also told the secretary that I have been having intermittent drops to 49 bpm, but am hoping, as they are intermittent and transient and I still have a good sinus rhythm, he'll say it's still ok for me to have the Ivabradine. Thanks again for posting your experience with Ivabradine. I really appreciate it.

Thank you so much corina, that's really kind of you.

Thank you Clb75. I will book an appointment with my GP and see what they have to say.

Oh! Don't know what happened to my formatting there. I cut and pasted for the spelling of carbamazepine and ended up with it all highlighted. Sorry.

Hi, Thank you so much for replying Katybug. I have read the occipital neuralgia thread, but I don't think that's what I have, as it doesn't seem connected to my neck or the back of my head at all. I have a friend that has TN and it's nowhere near as bad as the attacks she had before going onto carbamazepine, it's more constant and less episodic, if you see what I mean? I think I'm going to have to book an appointment with my family doctor/GP, but I already know they won't be much help. I'm hoping it's not going to be a long-term thing. It's been just over a week now and I have had it last up to about 10 day max in the past, but it doesn't seem to hang around for months on end at least. It's just horrible timing with my husband and family all being away. Called my EP's office, only to be told his secretary is not in today, after already not being in at all last week and the second half of the week before and the two other cardiology secretaries I spoke to said they can't help me, I need to speak to my EP's specific secretary. I don't want to start the Ivabradine, until I'm sure he is going to continue to prescribe, now my GP has refused shared care and now I dare't start until this facial issue is sorted, not to mention the bradicardic episodes. Worried about starting it at all if I can't reach the prescribing physician for weeks on end. I am so grateful for this forum, as I feel so alone with all this right now.

I have been struggling for over a week with what I can only describe as nerve pain, mostly in my face, but also running into the side of my head/temple. I have had migraines most of my life, neurologist described them as 'complex migraines' I think because I have a few different types and get different auras with each. One of the types of migraine I have is totally disabling, lasts days and seems intractable to all the medications they've tried over the years. However, this 'nerve' pain is nothing like any of those. The only way I can describe it is as a really sharp, nerve-like pain, running along the nerve lines in my face, so above and below my eye, across the tops of my top teeth and under my lower teeth and up into my nasal passage. On top of that it will sometimes shoot into my temple and that triggers the ice-pick headaches I've had for as long as I can remember, but causes them to happen in clusters that last longer than the usual lightning-bolt quick jolt of pain. It's also postural to some degree, in that when I change position or stand up I have to clutch my head for a minute because the pain is that much worse. I'm also finding it harder to stay seated, rather than lying down for any length of time, when usually I can get by sitting with my feet up for a while, then getting up and doing my jobs/housework etc in short bursts. None of the over the counter medications I've tried seem to touch it. I've tried migraleve (paracetamol and codeine) and lysine (ibuprofen) (although I have to watch NSAIDs at the moment as I have a duodenal ulcer that's kicking off). The only other thing I've noted is that I seem to be suddenly having bradycardic drops. I've had them at night before, but alongside this head pain they've been happening during the day as well. So where my usual resting hr is around 62-64 (it's regularly been higher though, between 75-80, the last week or so for some unknown reason) it's dropping down to 49 bpm. It seems to drop down quite quickly, then slowly climb back to normal, then repeat the cycle over and over. I have finally been sent my prescription for Ivabradine and now I daren't take it, as I'm worried about there being a problem caused by the already low hr. I've been trying to reach my consultant, but his secretary was on holiday all last week. Going to call them as soon as the office opens today, but I don't like my chances of getting any appointment any time soon and it's not common to get to speak to consultants over the phone here. My family doctor will be no help, as they refused to share care re the Ivabradine due to lack of knowledge about either dysautonomia/pots or the off-label use of ivabradine for them. I have no idea why I am writing this post really, as there isn't anything anyone can do, I guess I am just feeling alone and worried - not helped by my husband working away this week and next and my parents being on holiday, which leaves me with three children (one of whom has ASD) to look after on my own. Sorry for the whinge. I just needed to let it out somewhere.

My dr told me it takes between 2 weeks and a month for the side effects to settle down. I was on Bisoprolol, not sure if that has the same name outside of the UK. Unfortunately the side effects didn't get any better for me. Among other things, they dropped my bp so much I couldn't get out of bed at all without passing out. I have also tried Propanolol which, for me, had less side effects, but sadly no help for my pots. If the side effects aren't so dreadful that you really can't cope, I'd try to give it a bit of time and see if things improve. If not, as others have said, there are quite a few other bb's you can try.

Latest in the ridiculously long saga of my being prescribed Ivabradine by my cardio/electrophysiologist is that, my GP called today and has flatly refused to prescribe it. Apparently this is because it's an off-licence med for pots and she made the decision after taking advice from the district pharmacy adviser. It is just shy of three months since it was diagnosed and I have had no help at all in the meantime, I haven't even seen a dr, of any sort, in that time. Apparently my GP wrote to the cardio to say she won't prescribe (still using snail mail, so everything takes forever) and I was told to take it up with him. Phoned straight away, only to find his secretary is away on holiday until next week. I have been having a nightmare contacting anyone right the way through, as the GP is part-time and so, apparently is the cardio's secretary. I spoke to another secretary from cardiology, who very kindly pulled my file to see what was happening, but also said that if the GP refuses to prescribe, the best I will get is one prescription from the cardio/electrophysiologist, which sounds pretty pointless. Apparently a letter was sent to me last week, enclosing a prescription, that I will have to go to the hospital to fill, but she couldn't tell me how much the prescription was or for how long. She also checked when my next appointment was (as he'd said he wanted to see me in 3 months, which would be next week, but I haven't had an appointment through) but after ending up with no meds for all that time it seems I've had my next appointment bumped to mid September. I really needed to see him to discuss my nocturnal episodes and to find out the results of my echo, as all the GP would say was 'normal', which I know from experience, tells me nothing and I haven't been copied in on the results. Does anyone know if UK/NHS consultant can prescribe for as long a I need it or are they restricted to single/starting prescriptions? I would hate to start it, find it helps then have it taken away again. The whole thing is ridiculous, as there are no licenced meds for pots in the UK, so if every GP takes this attitude surely none of us would be getting treated? Also, the same surgery prescribed the Bisoprolol prescribed by my private consultant without batting an eyelid, yet that's off-licence too.

I have had a call from my GP's office today to arrange a telephone consult to discuss my Ivabradine prescription. Problem being, the first available appointment is not until next week. That will be just a few days short of 3 months since it was prescribed by my electro and I still haven't tried it. I called my electrophysiologist's office last week to ask them for a interim prescription, while my GP - who refused to issue the prescription because it was off-licence - was off discussing it with the district pharmacist. His secretary was away, so another secretary took a message and emailed her for me. In the meantime the district pharmacist had been into my GP's office, on a day my GP wasn't there and told them that there was no need for any fuss, all they had needed to do was call the electro and discuss the prescription directly. (While it is off licence it is rated 'amber' which means GPs can prescribe it on the specific instruction of a specialist, so there was no need for the GP to refuse to issue the prescription.) In other words, it could all have been sorted out with one simple phone call. Afaik, the GP was supposed to speak to the electro yesterday, so, hopefully, this telephone consult will be to tell me they are finally going to issue the prescription. Then again, if that was the case, why not just write the prescription and ask the secretary to call and ask me to pick it up? It could well be that this telephone consult is going to be yet another hoop to jump through. With that level of farcical buck passing and lack of ownership/responsibility, I'm not fancying my chances of getting any other meds sorted any time soon.