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DADofaPotsSon, I think I am going to have to rope in my dh to help me get some nightly bp readings. I'm so groggy in the night that I'd probably mess it up if I tried it on my own and to be honest, his sleep is so disrupted by my episodes these days, he'll probably be willing to do anything that might lead to some answers ... and a good nights' sleep! Taking midrodine in the middle of the night is a radical step, I think your ds' bp must have been much lower than mine. I can see how it makes sense to raise bp and see if the episodes stop though. I salt load as much as I can, but have a feeling it's still not enough and I drink so much water I think I might be becoming aquatic. I've always drunk at least 2-3L of water a day anyway, as it just felt like the right thing to do. I now probably drink at least 4L, plus a couple of cups of decaff coffee. I also used to crave salt before I found out I was sodium deficient, so I think, broken as it may be, my body does it's best to tell me what it needs. I'm thinking I might have to resort to slow sodium tablets for a while and see if that helps - not keen as I've read they cause nausea.

Hi Sarah I have had Long QT ruled out by both a cardiologist and electrophysiologist and it was the eletrophysiologist that prescribed the ivabradine, based on his examinations, three ECGs and an echo. I think, in the UK, it has to be the cardologist/electrophysiologist that orders a holter monitor. I am supposed to be seeing him again in a couple of weeks - just waiting for my appointment to come through, so will ask if he thinks that's a logical next step. My husband recorded some odd episodes I started having around 2010-ish, where I would suddenly slump, have reduced consciousness and slur my speech. He showed them to my neuro, who, thinking possibly complex partials, ran lots of tests and yet another mri and eeg, but didn't find anything. They were also concerned about the possibility of TIA's for a while, but ruled that out as well. I was on Topamax a long time ago, for complex migraine. It did reduce the frequency of my usual migraines, but I had horrendous side effects, even on a very low dose and developed a new, longer lasting, more severe migraine while I was on it - trust me! Thank you for the links. I've had a quick look, but am feeling dreadful and really brain fogged today, so will have to come back to them for a proper read.

I've read a few interviews with D Ella and while her diet is obviously super healthy and therefore a good thing for most people, it's worth noting that she admits to a particularly bad diet beforehand (mostly bagels, burgers and sugar) and that, she was on meds, plus a gradual exercise programme as well. According to the interview I read with her last week it took her 18 months to wean off her meds and two years before she felt healthy. So it's still a long, drawn out process to recovery and then, realistically it's still all about symptom management. I think some people (including me at first) jumped on her initial press stuff and thought she was advertising a 'cure', but it's not a cure, it's just something that will/might help some people to manage their condition. "Getting better was a slow process. It took just over 18 months to come off my medication and just over two years to feel normal. And it's still a case of managing my symptoms. I eat this way because I love it, but also because I have to." (UK magazine Good Housekeeping July 2016 issue) Personally, I have found eating a low carb/low sugar diet helped increase my energy levels. I wasn't particularly doing it to treat my health issues, but because I wanted to lose the weight I've gained from being immobile/low activity for so long and work myself back up into regular exercise. It took a couple of weeks to feel the benefits, but once I was fully in ketosis I had more energy than I've had in years. It didn't get rid of my pots symptoms, but I felt less exhausted and more able to face the things I had to get done. Unfortunately I broke the diet for a big celebration and will now have to go back through the dreaded ketosis flu to reach the same point.

Thanks again. I am going to have to try and find a way to record my overnight bp as well as getting spo2 and hr readings then. Obviously, the easiest thing would be for them to send me for a sleep study, but I know from past experience that, ridiculous as it sounds, I have to prove I have the problem before they'll test for it! Re arrhythmias, all I know is that my rhythm is abnormal. My cardiologist/electrophysiologist says he is still trying to work out if it's 'normal for me' or potentially problematic. I was initially referred to him because an ECG at my GP's office threw up Long QT and a couple of other anomalies, but apparently the prolonged QT interval is not bad enough to be clinically significant. I have now had two more ECGs with similar results and an echo that, I'm told, showed my heart and function to be fine. I don't have a copy of the reports yet though, so I don't know what the results actually were. I do see rhythm anomalies pretty regularly on the wave form of my oximeter, but don't know how clinically significant that information would be. From what I gather, in my area they are reluctant to use Florinef unless your bp is through the floor most of the time and while mine is generally low during the day, it's not considered low enough. This morning, admittedly after racing around trying to motivate my teen to get ready in time for his school transport, it was 106/66, so would actually be considered healthy - mind you, I couldn't get my spo2 over 91/92, but I think that's something to do with using a finger oximeter and blood flow than it is actual oxygen levels. It's rare for the systolic to be above 100, but also, on a typical day, it's rarely lower than 90. On the lowest dose of Bisoprolol it was so low my bp monitor couldn't get a reading, especially on standing tests, but also sometimes when seated. When I had my 24 hour capture my sodium levels were less than a quarter of what they should be, so I'm assuming, if that's an aldosterone issue, Florinef would help with that. To be honest, I am having problems getting anything prescribed by my GP, even when they have formal instructions from the hospital, as it's all off-licence and there are also arguments about whether the hospital or GP's should fund it. I've been caught in the middle of that argument for almost three months now and still haven't received my prescription for ivabradine as a result.

Cross posted. Thank you DADofaPotsSon. I am currently overweight, although 20lbs less so than I was two months ago thanks to changing to a low carb diet. So I guess it could be either with me. Did they offer any advice/support/treatment or just an explanation of the mechanism?

I had two separate episodes last night, after three nights without one. They tailed off as I recovered from allowing myself to get worn out a couple of weeks back. Then it was my birthday and I had a day out with family and friends, leaving me exhausted again and that night the episodes came back. It's also my pmt week, so that's relevant. The only other thing that was different was that I forgot to take ranitidine before bed last night. I do have GERD and am now wondering whether there's a possibility that some acid/vagal type stuff involved. I will keep working at trying to untangle what's going on and am so grateful for all your suggestions.

Katybug, that's a good idea, if we can find a way to do it. We nearly bought a little ISP camera for watching the dogs while we're out and about last year, that would probably work.

DolphinDreamer, I am so sorry you are going through it too. I do have to say though, that, to me, yours sound more like complex partial seizures than mine. I don't have any rhythmical movement, it's completely random. Not knowing where you are and needing to pee afterwards are, I believe, fairly indicative of seizures. I do know where I am the whole time and afterwards and I can sometimes speak a word or two to my husband, but I am just very groggy and not really with it at all. The neurologist I saw was a locum, while mine was on maternity leave. He was vile to me, to the extent my usually very quiet and non-confrontational husband actually confronted him if he had anything useful to say and if he was actually going to do anything. At that point he booked me in for a week long ambulatory EEG, but failed to check the regs first and as it turned out, I didn't qualify for the funding. After I was sent a letter by him telling me not to attend the multiple appointments it involved, I was then sent a series of 'Did Not Attend' letters and booted off the neurology department's list for failing to attend appointments - bonkers! I haven't bothered with neurology since, as after 8 years of investigations they had no clue what was going on anyway. I would have thought a sleep study would have been the next logical step, but nothing about that guy was logical! (He's the same guy that told me that my WML were nothing, after my usual neurologist and her boss (head of department) had said they were worrying.) It is so hard when dysautonomia cross so many different medical disciplines, as you never seem to get so see someone that actually understands. The only person I've seen that got the bigger picture was the private consultant I saw. He wasn't a specialist, but a General Medicine Consultant. Their job is to look at the whole picture and refer on to different specialists when they've got some idea of what's up, but he had a special interest in syncope which also helped. I wish I could have afforded to carry on seeing him. I really hope you find someone who can help get you some answers soon.

Yogini, we've managed to get my finger oximeter on a few times. What that showed was my pulse dropping then raising over and over, by about 10-15 beats. I tend to think that's due to the yawning and muscle tensing causing the increase though. SP02 is usually higher than it is during the day, as I tend towards low naturally but it's often 98/99 during an episode. My resting heart rate is usually between 58 and 62. It's usually around 58 when I first wake in the morning. During these episodes it can sometimes drops to 52-54. When I was on Bisoprolol it was dropping down to 40 at night and I really did feel like I was going to expire then. We haven't really managed to record bp during an episode yet. I do have a home bp machine, but with my arms tensing and me being out of it, we've never managed a reading so far. I have generally low bp, no always clinically low, but tending to the lower end of normal. When I'm particularly symptomatic it tends to be my diastolic rather than my systolic that's drops most, so I get readings like 90/54. Again, on Bisoprolol my readings dropped through the floor and I spent the whole of Easter unable to get out of bed as a result.

Issie thank you for your thoughts. I thought sleep apnoea at first, but my husband says he's never noticed me stop breathing and I don't snore. I'm wondering if what Dad ofaPotsSon mentioned, about hypopnea could either mean non-obstructive ie central-apnoea that's incomplete - ie shallow breathing, rather than stopping altogether or whether shallow breathing alone could cause it. On the times I've managed to get a finger oximeter on while I'm having an episode, even afterwards when I am able to control my breathing and ensure it's regularly paced belly breathing, my pulse strength is all over the place, going from almost completely flat then rebounding all of a sudden to full strength, then mid/average range and back down to flat, really erratically. This is obviously once I am awake, during the episode. I have never seen it do that during the day, even when my pots is at it's worst. Interesting that you mentioned MCAS. That's something I don't know a lot about, but the only thing I think I have that's relevant to it is flushing on my face neck and sometimes torso that's very red and patchy and has no apparent cause - that tends to happen in the evening, but can crop up at other times when I am not doing so well generally. I'm afraid I don't know anything of any consequence about liver function either. All I know is that recent and previous blood tests have apparently shown my liver is in good shape.

I think you're right Katybug and that's definitely what I'll be pushing for, but won't be expecting it any time soon, as the wheels of the NHS turn very slowly - even when you have a good doctor on side.

Thank you, Ancy. It's good to hear from someone that has found Ivabradine helpful. I am really hoping it does the trick for me, I desperately want at least a little bit of my life back.

Angelloz, thank you so much for your kind reply. I'm sorry to hear you also have worrying breathing episodes. To be honest it helps a lot just to know I'm not alone with this. I think I am going to try and push for a sleep study. I'm just in the process of researching the purchase of a new oximeter that I can use overnight and upload the results to my mac. I have a finger oximeter, but need something that will record pulse and sp02 throughout the night. Finding one that doesn't break the bank and also works on a mac is proving challenging, but I think may well be a necessary expense. Unfortunately, over the years I have learned the hard way that taking solid evidence along to appointments is the best way to get doctors to take you seriously. Knowing my luck, I'll get the sleep study and it will turn out to be a night with no episodes.

DadofPotsSon, thank you so much for replying. I'm sorry to hear your son has struggled with similar nocturnal episodes. If you don't mind me asking did your son have the muscle tightening and yawning as well? I'm guessing it was most likely central hypopnea, rather than obstructive and therefore autonomic in origin?

Thank you. I will have a look at the search feature and see what I can find.

Hi Apologies for the long post. I'm a newbie and have just posted an introduction, but thought it better to start a separate post about this, as the history/details are quite long-winded and I'm really getting pretty desperate for some answers and/or reassurance about what might be going on. Both my husband and I are beyond exhausted this week, as I've had episodes like this every night since last Friday and neither of us have had anywhere near enough sleep. I started having these episodes in 2012. They are very hard to describe, especially as I can't always remember the details of what happened during them, but I have my husband's description, as well what I can remember to go by. What happens is I wake, usually between 3.30 and 4.30 am with what I can only describe as a dropping/sinking feeling. Not like the dropping feeling people sometimes get as they fall asleep, that makes them jerk awake, something that feels much nastier. It actually feels as if I am slipping away (I know that sounds overly dramatic) but it is really the most horrible feeling. Then the feeling starts to build up and up, again, very difficult to put into words but, it's like some sort of prodrome that always leads to a full on episode. The best thing I can relate the prodrome to is the sort of adrenaline build up you get when you are anticipating something bad happening. Eventually I start to feel like I have no choice but to tense the muscles to the max - always in my arms and legs, but sometimes my back as well and I start to yawn. The yawning is so deep that it over-inflates my lungs until my ribs hurt, but while I get the large intake of breath, I can't complete the yawn. There is no slow exhale, I find I can't exhale properly for what feels like an age, then it's a sharp, sudden outtake of breath, which really hurts and snaps my jaw shut at the same time. These yawns come back to back, thick and fast and I feel lightheaded and dizzy. My eyes also water uncontrollably. During the episodes my legs and arms and sometimes back will repeatedly tense and stretch out. I don't feel like this happens 'to me' exactly, but I do feel like have no choice in doing it - I am aware that sounds contradictory, but again, it's very hard to explain. I suppose I could say it's akin to something like RLS when people feel the compulsion to move their limbs, but having had RLS in one of my pregnancies I can honestly say it's nothing like that. After all these years of this occurring and me not having an serious consequences from them, I have learned not to panic and to try and breathe through the episode as much as I can. I concentrate on taking slow smooth belly breaths while I'm not yawning. (Having said that, this week's have been particularly nasty and I have found it hard to stay as calm as I usually do through them at times.) My husband is a fantastic support. He coaches me to breathe through it (a bit like a birth partner!) and holds my hand - although often I can't stand to be touched during the episode. I am aware of him speaking to me and can sometimes respond with one word answers, but sometimes I just can't respond, as the feeling in my body is overwhelming. Eventually it subsides and I find I am so exhausted that I fall asleep and sleep really deeply for hours. Also, all my muscles ache the following morning, particularly my legs/arms and ribs. In general these episodes last about 20 minutes, but I do have more brief episodes and also the occasional longer one. I can also have several a night, but that is less common. Sometimes I can go weeks without an episode - although I usually have at least one in the run up to my period - and other times they will happen intermittently for weeks on end. I do know that letting myself get exhausted and/or massive stresses seem to make them more frequent and worse, which means that if I have a few bad ones and lose a lot of sleep, I am more likely to keep having them night after night. The episodes started I a couple of weeks after an incident when I was on an, extremely rare, child free weekend away at a hotel with my husband and our friends for a celebration. I started to feel lightheaded, disorientated and generally ill, so retired to my room. I went to bed, but didn't have time to get to sleep before I felt even worse and like I needed to get to the bathroom urgently (wasn't sure I felt sick or like I was going to have a bad stomach, but I was expecting one of the two - although neither occurred). As soon as I sat on the toilet I blacked out. Woke up the wrong way around to have simply fallen off (head was under the wall-hung toilet bowl). When I awoke I couldn't work out what had happened, all I could see what white (turned out the white was the underside of the toilet bowl, but I couldn't work that out for a minute or two). I tried to sit up and banged my head on the underside of the toilet bowl! I also had a massive fist-shaped bruise on my inner left arm, I presume where I had fallen heavily on that side with my hand landing under my arm and that developed quite spectacularly over the next 24 hours - it was very colourful indeed! In addition, I had kicked a chair, which was opposite the toilet and it was out of position and facing the wrong way. I also had bruising to both feet and ankles. I pulled the bath mat over me for warmth, lay still till I felt I could get up then pulled myself back onto the toilet. I immediately blacked out again and woke up on the floor - the right way around this time. I lay there until I felt I could move, then had to crawl back to the bedroom and managed to text 'help' to my husband, who had gone back to our friends thinking I was just going to come down with a migraine. This event was initially assumed to be a seizure of some sort. I refused to go to hospital that night, but was taken to the emergency department the next morning. They did basic tests and observed me for 8 hours, then wanted to keep me in, but I had to get back to my children, as my Autistic son wouldn't have coped had I not returned at the promised time and I actually felt fine by then. Not staying in meant all the tests I needed were delayed. I eventually had an mri (have had LOTS of those over the years) and and EEG, but nothing new was found. I was sent back to neurology, who were very dismissive, said there was no evidence of a seizure on my scans (which were taken 2 and 3 months after the event) and that he felt my nocturnal seizures weren't neurological and probably related to the menopause (which I am not in yet!). He also told me I must be lying as the sheer number of episodes I'd had in the preceding three months was impossible. When I saw the private consultant he felt the incident was most likely related to pots/dysautonomia and that the nocturnal events are probably rooted in dysautonomia somehow as well. He also said that he knows of other dysautonomia patients that have very odd nocturnal episiodes. I have, as yet, never had another event like the major one in the bathroom and only ever have nocturnal episodes when I have already slept for at least a couple of hours. These episodes come and go in waves and are at their worst the week before my period (hence the neuro suggesting they are menopause related). I have found, if I take co-codamol 30/500 at about 10:00/11:00 pm, I sleep through without an episode, but I have now run out of these, as they were prescribed in limited supply for an injury. I'm not sure I want to take them anyway, as I'm conscious of the potential for addiction. I struggle with exhaustion anyway, but when we're having a week like this one with nightly episodes my husband also gets exhausted and life gets even harder and this week has been unbearable. Does anyone have any ideas what might be going on here and what I can do about it? I would really appreciated anyone's insight or ideas about them.

Hi I am new to the forum, but will admit to lurking for a while before being brave enough to sign-up My diagnoses are Dysautonomia, Pots and CRPS. I am also hypermobile and my whole family is about to go through the genetic counselling/testing process for Ehlers Danlos. I also suffer from what they're calling Complex Migraine, but have been unable to tolerate any of the treatments, especially Imigran/Sumatriptan which caused me to have a cardiac event that included loss of consciousness. I was only diagnosed with the dysautonomia and pots a few months back after years of being prodded, poked and tested for everything from MS to Epilepsy and never getting anywhere. The only thing that was ever found was multiple white matter lesions, which, at the time I was a bit young for, but have been brushed off/glossed over once they ruled out MS with a lumbar puncture and evoked and visual potentials. Oh - and at the time of my first scan they said there was evidence of recent encephalitis, that I was unaware of. This was put down to when I thought I had a particularly bad migraine and ended up in bed for 7 days, while I was on holiday with my family a few weeks prior. I live in the UK and as my husband's new job came with health insurance, he persuaded me to go private to see if we could get to the bottom of things. I had done a lot of research and kept records from home testing with an oximeter and was pretty sure it was pots, so specifically chose a consultant listed in the DINET directory. Unfortunately, the insurance cover was capped, so not long after the diagnosis I had to go back into the NHS system and there is little or no knowledge or help in my area for the problems I have. Fortunately, I was sent to see a cardiologist when my mother was found to have heart issues that are suspected to stem from EDS and I had an ECG at my GP's that was abnormal. It seems I struck lucky and the consultant I saw turned out to be an electrophysiologist with an interest in pots. Since then I have had an echo and have just been told this week that my heart itself is healthy, which is a relief. My current situation is that my GP and the hospital are fighting about who is going to prescribe the Ivabradine my consultant wants me to try (I was really ill on one beta blocker and the other just didn't work). This has been going on for two and a half months. I am doing my best to manage the pots and do the non-medical interventions routinely, but it's not easy to keep going sometimes, as I am the mother of 3 children, one of whom has Autism and my husbands job is requiring him to do longer and longer hours and regular out of town trips these days. I am keen to try the Ivabradine, but also concerned, as my resting heart-rate is often 62 and regularly drops to 56/58 in the night and I have read that they prefer the resting rate to be above 70 for this drug. Does anyone have any experience with this? My starting dose is only 2.5mg twice a day, so I'm hoping it will be ok. What's bothering me most at the moment is the extreme exhaustion I have from repeated, distressing nocturnal episodes. It's actually those episodes that finally prompted me to sign-up and post. I am going to start a separate thread about them though, as the description and history are quite long-winded. Anyway, that's me. I am very happy to have found this forum and look forward to chatting with you all.