Mikey69

Hi All, Yes it's another question i'm afraid. Ok, so, i've been severely ill with Fibromyalgia since age 18 and even more ill when CFS/ME started in my early 20s. i can honestly say that i have gone through some truly awful, awful times with both conditions. (grand Mal seizure, pre - seizures, collapsing many, many times, being unable to walk/and barely crawl for years at a time, blah blah blah. I've always just dealt with it, brushed myself off and got on with my life - always determined to rebuild my life as soon as my body would allow. My Dysautonomia began presenting itself 2 years ago, and whilst i found the consciousness symptoms disconcerting in the early months, i just brushed them off as usual and got on with my life. In the past 6 months i began approaching collapse/fainting on an almost daily basis. I felt truly horrendous each time. Turns out i was having blood sugar/insulin issues and was becoming hypoglycemic. Again, i just took it in my stride, as i didn't know what was happening at the time. Again, it was very disconcerting, but i knew it would pass, so just carried on as best i could. Then the Insomnia kicked in (over 100 days). This was very difficult to overcome, and i'm still not quite there yet. But thanks to the sleeping meds and sleep deprivation i found myself tearful and even totally distraught and inconsolable at times. This has never happened to me before. I've always been so strong and super cool about these things. But again, i knew it would pass when i got off the meds (i chose to stop using them after a week for one and a night for the other - preferring insomnia instead). Low and behold the tearfulness stopped once i began sleeping better. So now to the question i have. Now that i know a lot more about Dysautonomia I am able to recognize when i am having a 'Dyssy fit', (flare up to normal people). I'm currently having one as i write this. It's very unpleasant to say the least. i have noticed that when the Dysautonomia makes me feel particularly unpleasant/profoundly ill i can start to feel emotional/a little upset. I am not at the point of crying or being tearful, but it is definitely having an emotional impact on me. i never get upset or phased by anything, no matter how bad things can be, so i don't understand what is going on with this. Can Dysautonomia cause emotional changes/tearfulness, etc? I hate this when it happens - it always makes me feel 'emotionally weak', even though i know i am very emotionally strong and resilliant, Thanks in advance, Mike :-) Mike

Hi RobstahLobstah, Please bear in mind i'm still new to all this myself. But i have been a busy boy researching Dysautonomia since i found out what was wrong with me and that sounds pretty normal for Dysautonomia. I am surprisingly healthy given my broken body. I've always kept myself as fit and healthy as i can. I am fitter than most able bodied people in many ways. I've always really looked after myself and have a very strong and 'young' cardio vascular system. One of the things my body has lost control of in recent months is blood pressure and heart control. So, my blood pressure is all over the place most days. I'm currently taking beta blockers for high blood pressure - which i find amazing, given my lifestyle habits. So I don't think you need to worry, just keep a watchful eye on yourself :-)

Hi Debbie, It's very good to hear from you again. Your very kind words are much appreciated. I didn't realize you are a fellow Fibro sufferer. i am very sorry to learn that you have lost friends and have struggled with family members. it's so typical for hidden illnesses. I too have lost the vast majority of my friends and have also had similar family issues with my brother. it's so sad really. I do recognize how **** fortunate i am to have such an amazing lifelong partner by my side. i don't know what i would have done without her of late thanks to this **** Dysautonomia. I am having a bad Dyssy spell at the moment, so i don't feel very special! haha!

Hi Kateybug, I hope you are doing ok? Thanks so much for the links. They make for very interesting reading. We have both researched ACM and feel well informed. had an appointment with ENT specialist and discussed this, but as suspected she couldn't tell us anything (not her area of expertise), so We are waiting for a referral to a neuro surgeon. Hi Debbie Rose and Robstahlobstah, it is a pleasure meeting you both. Thank you so much for taking the time to reply to my questions. Your input is gratefully received and very useful. We have been doing a lot of research on this since my partner was diagnosed with POTS, Dyautonomia, ACM, etc. So we are much more informed now. Its funny how life goes sometimes isn't it? When i first met my partner i was the ill one (CFS/ME and Fibromyalgia), then a few years back my partner got ill, but to be honest she always seemed sickly to me. She was diagnosed with CFS/ME and Fibromyalgia a short time later (She has had Fibro since before i met her - she just didn't know it - Neither did i, but i began to suspect). Then i got my diagnosis of Dysautonomia earlier this year, and now my partner has just had her diagnosis of Dyautonomia! What a couple we make!?!**! lol! :-)

Hi All, I trust and hope you are all feeling as well as you can be :-) I have another question i'm afraid, only this one isn't for me, it's for my lovely partner who has just been diagnosed with Dysautonomia and borderline POTS (what a great couple! - we are both sick bunnies, haha!) At least we understand each other lol :-) My question is as follows: Partner has recently had an MRI brain scan and a vestibular function test. These haven't been discussed with the ENT specialist as yet, but Cardio specialist gave a good account thus: A borderline Arnold Chiari Malformation (Cerebellum brain stem slippage), Apparently nothing to worry about. Vestibular function test was abnormal. When warm water was syringed into her left ear it produced horrific symptoms - severe vertigo, disequilibrium, dizziness, almost passing out, severe nystagmus, etc. All the other water tests only caused mild symptoms, so this appears to be a left- sided problem, an imbalance as it were. We have also noted that she can sometimes stumble, lose balance, fall for no apparent reason. Also she is able to walk and turn head in one direction without losing her balance, but always struggles to walk in a straight line when turning her head to the opposite side. So again, a one - sided balance issue? We are struggling to determine whether the ACM can cause this or whether Dysautonomia can also cause such balance and vertigo symptoms. If anyone on here does have balance issues and/or vertigo problems, and abnormal vestibular function tests I would appreciate it if you could reply and let me know your experiences. We are seeing the ENT specialist in a few days and would like to know more about this before we attend the appointment. Thanks in advance, Mike :-)

Hi all, yes it's yet another question from me. I suspect i already know the answer will be yes, but i just wanted to check with others more experienced than I (Which is probably most/all of you!). I'll first point out that i have a very healthy cardio vascular system - or at least i did! Low BP, healthy heart, lungs of a 19 year old, etc. I'm on day 97 of insomnia. I have been showing signs of improvement, as i've not needed to take Diazepam very often and i'm sleeping much better several nights per week. I'm taking 300mg Valerian each night when i'm not on the Diazepam. I had my first totally sleepless night in a couple of weeks last night (boo!) and this was after taking 150mg Valerian then 2mg Diazepam an hour later, as i knew i wouldn't be able to sleep. Heart rate 60 bpm (great!), but heart sounded loud, pounding again (this had settled down for some time). I currently take 2.5mg Bisoprolol daily to lower my blood pressure, and this was working very well, with daytime readings at 115/70. In past few days i've noticed my heart is pounding more, and is louder at night again. I checked my BP several times since yesterday and it's 150/92 - even with the beta blocker! I know insomnia frequently causes raised blood pressure, but i had hoped this would be temporary. I'm sleeping better, but my BP isn't improving. I have two questions: Is insomnia raised blood pressure temporary or permanent? Can dysautonomia cause raised blood pressure for prolonged periods, which can then cause insomnia? Thanks in advance, Mike :-)

Hi jason_x It is good to meet you. Thank you for taking the time to write such a detailed response. YOur efforts are appreciated. Sounds like you've tried everything! Can i ask how long you have been dealing with insomnia? I'm on day 96 and i don't want to be stuck with this problem - it's playing havoc with my CFS/FMS and causing high blood pressure Cheers, Mike

Hi SarahA33, Thanks for the additional info. Luckily for me i'm well in control of my moods being a deeply spiritual/meditator person, otherwise i think i would be really struggling by now. Though i must admit the sleep dep. has been having quite an impact at times. Anniversary break was great in the end. Four days of rest and relaxation, with some gentle walking outdoors. I am now sleeping without Diazepam more frequently, though still not sleeping well, so i hope this is a good sign. I'm without Diazepam more often than with at the moment, so fingers crossed. I have had so many tests done, and all have come back normal/optimal thus far. I'm seeing an Endocrinologist soon, so hopefully hormones may be investigated. I'm now having major issues with high blood pressure, which i understand Dysautonomia can cause, as can sleep deprivation. I'm currently at 149/90 and that's WITH beta blockers! Not good, they seemed to be working well at first. Back to Docs tomorrow! Has Dysautonomia and/or insomnia caused high blood pressure for you or anyone else? Take care, Mike :-)

Hi Sarah A33 It's a pleasure to meet you. Thanks for taking the time to write a reply. i really do appreciate it, and your kind words and sentiments. They really do mean a lot to me. I do feel i'm coping very well given the circumstances, but I must admit i haven't struggled this much in some 20 years. I'm holding it together emotionally, somehow! I didn't sleep last night, so i'm very physically fragile today. Also a little emotionally upset if i'm being honest. I'm so frustrated with my current situation - i just want my life back! I'm told it's normal for the severely sleep deprived to get upset/tearful at times because of chemical changes in the brain? Is this true? I hope so, because although i'm fighting really hard. It makes me feel so weak when i get even a little tearful. I liked it more when i was a big strong male! :-) haha! I'm on day 90 now, i'm so desperate for this insomnia to be over. I just hope it settles down soon. It's my 10th anniversary with my lovey lady on the 10th September, It's a really big deal for us, and i don't want my insomnia to wreck it all :-( Thanks again for your kind support Sarah :-)

Hi all, thanks so very much for taking the time to write your replies. Your efforts on my behalf are really appreciated. I seem to be making progress at the moment, which is a good thing. I'm now saving the Diazepam for nights were i get less than 5 hrs. sleep. I'm a wreck if i get less than 5 hours. Insomnia and CFS/ME & Fibromyalgia are poor bed mates. I'm sleeping between 5 - 7 hrs. without meds over the past two weeks. It's not pretty - and it needs to keep improving because i'm struggling very badly during the day, but at least it's progress. I'm currently taking 300mg Valerian, not sure if it's helping, or if insomnia is resolving on it's own. it's a good job things are improving. I visited a sleep clinic in the North West of England a couple of days ago. It was awful - a total waste of time! Doc. didn't tell me anything i didn't already know. He suggested sleep restriction therapy (5 hrs. sleep per night max). Not a good suggestion for someone with severe CFS/ME & Fibromyalgia!. He also suggested i spent money on an online CBT service, which i don't need! he already confirmed i was doing everything i could to help myself! My partner accompanied me, she was disgusted. best bit of all was that he discharged me from the service, so wasn't even interested in a follow up appointment to see if his strategy works! It was honestly laughable, or at least it would be if it weren't such a dire situation. Welcome to the NHS :-( So basically i've been abandoned. I'm going to speak with my GP, but they also abandoned me because they felt there were no more treatment options, and they hoped the sleep clinic would help. So i've reached an impasse. I'm very interested in Ramelteon ,but it isn't available here in the U.K. (Surprise, surprise!).

Hi Tampafd and Sylie, It is very good to meet you both. Sylvie, thank you so much for taking the time to write such a detailed response. i really appreciate it. i am sorry to hear you too are having chronic insomnia problems - it isn't good :-( I managed 1 week off the Diazepam last week, got one pretty good night, then sleep went downhill rapidly, culminating in my have two consecutive nights with no sleep at all, so i was very, very, poorly yesterday. Poor sleep and CFS/FMS is a BAD combination. Last night i took 500mg naproxen for pain (made me feel quite weird) and 2mg Diazepam. I slept very well, but awoke this morning feeling like a cheap dirty druggie. It's 3pm and i'm still not clear of side effects. I suspect mix of drugs is responsible. So, im going to try Ibuprofen - it's not as potent as Naproxen. I will have a look at the recent post on adrenaline surges. Thank you for pointing that out to me. Thanks again, I hope you feel better/get some sleep soon, Mike

HI All, Ok so as some of you know i'm on day 72 of bad insomnia, which, combines with severe CFS/ME and Fibromyalgia, is making my life VERY difficult. I've been working with my GP to resolve this. I've been prescribed 2 sleeping meds. Zolpidem and Zopiclone - neither worked and gave me awful come downs. Amytriplaline 20mg - didn't work at made me feel very weird and unpleasant. Diazepam (Vallium) 4mg initially - partially worked but gve me awful side effects I have been managing by taking Diazepam 0.5 - 3mg as needed. THe problem is that it's highly addictive, so can't be used long-term. This has been a 'lifeline', it works for a short while, but my body adapts, then it's ineffective. So i have to keep trying to stop using it (to make sure i don't get addicted, and to stop my body from adapting), hence varying the dose a lot. I've tried managing without it several times and i am unable to sleep at all. I'm currently getting 0 - 1.5hrs. sleep per night without Diazepam. 3 - 4 hrs. sleep per night when my body had adapted to Diazepam, and 6 - 7.5 Hrs. sleep if i haven't slept in a couple of days and i take a 2mg dose. I am currently unable to function during the day unless i've had at least 6 - 7 hr. sleep. Needless to say, i don't really have much of a life at the moment, and neither does my poor lovely lady, who is consistently upset and worried about me (She's very sweet) :-( i saw my GP this morning (he's brilliant), and he said that i can now only use the Diazepam in an emergency - problem is most nights are an emergency. So things can only get worse. He also said that there is nothing else the medical profession can do for me for the time being - gulp! I am awaiting an MRI brain scan and Endocrinology appointment, but these will be months away. So im stuck, at a dead end, etc. It's our 10th anniversary together on September 10th and obviously this situation isn't going ot be conducive ot our planned celebrations. We are currently looking into Valerian and other herbal remedies, etc. I'm also practising very good sleep hygiene, i've cut all coffee, alcohol, caffeine from my diet, etc. I'm also a good meditator/very relaxed, etc. So i'm using all the 'mind tricks' i can, etc. I'm wondering how anyone who has had longer term insomnia deals with it. So, basically, how do you deal with your insomnia, improve your sleep, etc? hanks in advance, Mike -)

Hi Katybug, Nice to hear from you again, Hi SarahA33 - it's very good to meet you :-) Thanks for your imput once again katybug. I think an adrenaline rush is all i could think of to explain the event. Sarah, oh yes i get tired! lol! I have severe CFS/ME and severe Firbomyalgia, so energy was always a problem before the insomnia began. Let's just say its made my life even more interesting than it already was! I've been at point of collapse so many times since insomnia began. I do hope it does settle down soon. I would like to get my former life back! I am a very lucky man, my lady is wonderful. it's my birthday on 3rd September, and our 10th anniversary on 11th September - a major event for us. We are still very much all loved up, and i don't want this to wreck our celebrations. i am currently awaiting a referral to a sleep clinic. But i'm not expecting anything from them any time soon. The UK is awful for good quality medical care/support. I'm more than 70 nights into this and in serious trouble - and we have yet to make any meaningful progress with cause/treatment, etc. It was only my researching very carefully over the past two years that led to my being diagnosed - basically by myself! The Neurologist i saw recently just kind of agreed with my diagnosis and that was that! No potential support/treatment was offered. Basically you have to be very rich and/or privileged if you want good medical support here in the UK - thanks to our crappy privileged politicians constantly eroding services/funding for the medical community. And further, if it's anything but a simple problem then the UK seems to be the last place you'd want to be. I always get more useful info from U.S. and Canadian websites - just like this one! lol! :-) Lets just say i'm proving to be an education for my local GP centre and my local hospitals! Thanks again :-)

HI All, Ok, so YES it's yet ANOTHER question. As some of you know i'm struggling with chronic insomnia at the moment, which isn't too much fun. I've had to learn to accept it, relax, and not worry about it, etc. So, last night i went to bed around 11:45am, after having almost no sleep during the previous two nights. (I've had a awful two days). I spent some time chilling in the bed with my lovely lady beforehand and was struggling to keep my eyes open i was so sleepy. I decided to try sleeping without taking 2mg Diazepam - i figured i'd sleep easily, given almost no sleep two previous nights. So lights out - all good. After perhaps 10 mins. i noticed a weird jittery sensation in my torso/abdomen. I was lovely, relaxed & sleepy, so this seemed weird. i tried to ignore it, but it intensified. I mentioned it to my lady and she hugged me for comfort. My body began to feel 'on edge'? Again , i tried to ignore it. My partner left because she couldn't sleep and was concerned she would keep me awake. I went to the bathroom then back to bed. I felt emotionally relaxed and fine and was comfortable, but the jittery sensations remained. I wasn't anxious, but it kind of felt like my body was? (I don't do worry or anxiety). So, i got up, spoke to my partner in other bedroom briefly, then back to bed. After perhaps only a minute or so my heart suddenly began pounding really loudly - the worst it's ever been. (This keeps happening - and i think it's this that is causing insomnia?). It was also faster than it should be for resting. I didn't feel emotionally anxious or tense or anything, but my whole body felt 'on edge', almost nervous? etc. I knew right there that i wouldn't be able to sleep - it was so loud and the jittery nervous sensations were very pronounced. The room also felt very empty with my lady absent. I asked her to return, which she did and i took 2mg Diazepam to see if it would calm my body down. We hugged a while, which was really comforting for me. (20 - 30mins.) Then we agreed to try to sleep. By this time my body was calmed, heart quiet, etc. And i fell asleep very quickly. and had best sleep in ages. I'm guessing the meds. worked. I just wanted to ask if this sounds like an Adrenaline rush? I've been reading about them on this forum, but never experienced one before. I don't believe this event/symptoms was caused by myself having an emotional response to something, because i am not that type of person/i'm relaxed about the insomnia, my mind was very chilled out, looking forward to sleep, etc. It really did seem like my body just suddenly started to misbehave for no apparent reason, I would appreciate any imput from anyone experienced in these 'rushes'. I'd also like ot ask how others manage their adrenaline rushes? Thanks in advance again, Mike :-)

Hi There OutofaDream, it's a pleasure to meet you. Thank you so very much for writing such a detailled and descriptive response - It's worth a lot! it means a great deal to me :-) YOur efforts really are appreciated. Sounds like you and i are very similar in many respects with regards to the rugs/alcohol thing. I HATE anything that messes with my consciousness - apart from sleep of course, but sadly sleep eludes me at the moment. I'm sure 65 nights of insomnia won't help with all the weird consciousness issues though. It's also playing havoc with my formerlly healthy blood pressure :-( I am really struggling to come to terms with the impact these dysautonomia symptoms are having on my life. There's just so much i don't understand, so many different symptoms, affecting so many different parts of my body. I've actually been very ill since the age of 13 with severe Fibromyalgia and things got much worse in my early 20's when i got CFS/ME. It was devestating at the time, but i got over it, rebuilt my life, adapted, etc. I learnt everything i could about both conditions and got myself as well and active as i could be. I knew my body very well, until some 20 months ago, which is when this crazy Dysautonomia roller coaser ride began. Now i feel like i don't know my body at all. I've never been unneved by symptoms before this - and things were very bad for me for 2 years at one point, i've also never been concerned for my well-being, or my future, but this has really changed everything. I have lost so much confidence when outdoors for example (because i have been at the point of collapse so many times). I'm working on it - pushing myself, etc. But i never know how i am going to feel from one minute to the next - so it's always a risk. THe insomnia is also making me tearful at times - what the heck? I NEVER get upset - life's too short for that! Added to that is the fact that i'm now housebound much of the time makes an outdoors person like me a very sad and frustrated little bunny! I know i'll get through this somehow, just not sure how yet! But gotta keep fighting! :-) THanks again, Mike :-)

Hi all, Yet another question i'm afraid. But i think i already know the answer (YES!!!) For the past 18 months ive been experiencing weird changes in consciousness that occur at any time and present in different ways. I'll do my best to describe them. I'm guessing this is a symptom of Dysautonomia? I definitely get them when i don't eat - and we have established that i have eating/hypo issue, that i'm now working on controlling - so thanks all for your kind imput. :-) Sometimes these symptoms are like mini short 'shifts' in consciousness. It's like the world (or i?) have suddently just moved quickly. it happened several times this afternoon. It's like the world suddenly shifts a tiny amount, it only lasts a second or two, but it's very disorientating. I'm sure my head was still at the time, but perhaps it wasn't, and this occurred because i moved my head? Either way, it's like the whole world suddenly moved a little. It's a sudden 'jarring' sensation. It's very disconcerting when it happens. I frequently feel like i'm a bit 'detached' from the rest of the world, It's like i'm seperate from the world, perhaps viewing from behind an invisible screen? i also frequently feel like i've taken some kind of mind-bending drug? Feelings of being dizzy, dazed, spaced out, woolly headed, disorientated, etc. THis can be mild or can become very severe. If moderate/severe i don't feel safe to be out on my own. All of this would be ok if it wasn't for the fact that i HATE consciousness disturbances. I NEVER get drunk or take mind bending drugs because i value my 'standard' consciousness too much. I can alo get the whole lot at once, which is very unpleasant. I really don't feel safe to be out when this happens. I've also discovered that both my varifocal glasses and contact lenses can be problematic. Especially the glasses. At times, it's like i have the wrong strength glasses - sometimes everything closeby seems to be over-magnified/enlarged, whilst distance objects are fine. Other times, it's like my vision seems a little blurred, even with my glasses on. This messes with my visual/spcial perception, which makes me feel a little disorientated at first, and fairly disorientated after a while. I am fine driving/walking shorter journeys/distanes, but longer trips are an issue. i tend to have fewer problems with my contact lenses, it's generally just a bit blurrier than it should be. I know that it's normal to have slowed pupillary responses with Dysautonomia, so im guessing this is the problem? Do others have problems with glasses/contact lenses? I rarely go outdoors at the moment because these symptoms can quickly become overwhelming and i feel unsafe. THis is crazy because just a few months ago i was driving long distance, fell walking, training, flying model aircraft, etc. I'm going stair crazy at the moment!!! :-/ Does everyone experience weird consciousness/eyesight symptoms? Thanks in advance, Mike :-)

Hi all, Well, i'm on day 64 with very mixed/very little/no sleep - lots of fun! My sleep each night currently varies from 0 - 1.5hrs, 3 - 4 hrs, 5hrs. on a good night, and 6.5 hrs if i'm realy, really lucky! This is with me practising very good sleep hygiene and taking 2mg Diazepam just before bed (Like a good little boy!). I'm now wondering how others on here cope/manage their insomnia? And how long it can last? I would very much appreciate it if people would share their insomnia experiences - how long it lasted, what meds. you tried, any other tricks and tips. I have a very important Anniversary to celebrate in three weeks, and i'd like a minor miracle to fi this before then! I don't want to be a jibbering, exhausted wreck during such an imortant occasion :-) Thanks in advance, Mike :-)

Hi All, thanks for the diet advice. I have started experimenting with smaller meals and eating 6 times per day, which is really helping, as is a late night light snack of protien/oats. I'm also now playing around with quick/moderate/slow release foods, which agian, appears to be having a positive impact. It's early days yet, but i haven't been at the point of collapse for a few days now :-) Yaaaay! I'm also reading Hypoglycemia for Dummies- it's a nice easy read when you're as sleep deprived as i am :-)

Hey, thanks for all of the replies regarding diet. I figured a dietician would be the way to go. I am actually awaiting a referral to one. However, i am in the UK, so it could be a while! Honestly, it's like trying to shovel sand with an eating fork! I am working really hard to understand hypoglycemia then i can manage my diet as best as i can in the mean time. I purchasd Hypoglycemia for Dummies - it seems really good thus far, and it's nice and easy to understand for my poor sleep deprived brain! :-) I actually had a better day yesterday, and didn't put any weight on, but i am still trying to figure out how often i need to eat. I'm still getting early symptoms every two hours or so, so i'm still not getting it quite right :-)

Hi katybug, thanks very much for the link to the Mast Cell articles. I will read those later. I just want to wrap my brain around the concepts then i can decide if it's an issue for me. I'm not sure it is. :-)

Hi, I get awful bouts of very severe migraines and also cluster (ice pick) headaches, which are unbelievably painful. I've not had a single headache on the kefir as yet. BUt we are all different. The only thing you could do is give it a try. if you are going to give it a try buy grains and ferment your own, don't buy pre-made off the shelf stuff - it's generally useless as the preservatives kill off most of the bacterias. Commcerial kefir may have up to 5 types, home fermented over 50 types - all good! It's really easy to do, there are loads of good videos on you tube. It's also very, very cheap. Once you've purchased your grains all you need is to keep buying milk. The grains also use up much of the lactose, so it is fine for those who are lactose intolerance. kefir has apparently been around since biblical times - it's the oldest most effective pro biotic on the planet. It was a very closely guarded secret in the Middle East, which is where it originated. There you go.... a free geeks history lesson too! :-) lol! The water kefir makes a lovely lemonade with a small amount of lemon juice added.

P.S. Also, i'd like to know what medications people are using for insomnia, Cheers, Mike

Hi all, Well a lot has happened snce my inital posts. i am finally wrapping my poor exhausted brain around what is going on in my body thanks to the helpful advise from all those who kindly responded. So thank you :-) Current update: I am still struggling with chroonic insomnia. I'm on day 60. I'm getting zero sleep without medications. And between 5 - 8 hours with meds. I'm currently taking a beta blocker to calm my loud pounding heart down at night and lower myy insomnia induced high blood pressure (Bisoprolol Fumerate 3.75mg) I'm also taking 2mg Diazepam (Vallium) every night just before bed. I don't like meds though - especially benzos! I'm trying ot sleep without them inititally, but i just can't get to sleep. The rapid scary weight loss has now stopped. I had to eat 3,800 calories a day just to maintain my weight at 76kgs! i was getting sick of food! lol! Thankfully this has settled somewhat. I'm still having to over-eat, but not quite as much. I've seen my GP so many times i've lost count in the past two months! I'm really struggling with hypo symptoms, but without having low blood sugar. I'm having typical symptoms every day, despite changing my eating habits to include/smaller, more frequent meals/snacks. I'm also eating typical slower release hypo foods (I already ate well anyhow, but tweaking is needed). I've got it kind of under control, but i would rather avoid hypo symptoms altogether if i can. The problem at moment is that i'm now putting weight back on! Talk about yoyoing! lol! I am trying to cut the calories back to around 2,800 daily, as i was maintaining my weight at this. However, I start to get hypo symptoms if i eat less than 3,100 calories daily. I'm trying to learn all i can about hypoglycemia, and am changing food types, etc. but it's early days and i'm still getting it wrong - hence the symptoms. Worse still is that i suspect it is low blood sugar during the night that is causing my insomnia. I try to have a light snack around 9pm, to keep me going through the night, but i suspect this isn't sufficient. I frequently wake up with a loud pounding heart, probably as a result of my body producing exessive adrenaline to compensate for low blood sugar. This is a well documented symptom of low blood sugar. Then i can't get back to sleep thanks to the adrenaline. Very frustrating! On the nights i can't get to sleep i am in real trouble between 3 - 5am. I end up with the most awful stomach/digestive symptoms - hard to describe, but very unpleasant. I wouldn't say painful, but profundly trembly, shaky, gurgly, rumbling, very hollow, twisted feelings, with my heart pounding and faster than it should be at rest. i think this has also woken me up frequently. I have eaten emergency food on a couple of occasions (banana, shortbread biscuits, fruit juice) and my body has settled and i've been able to get some sleep. However, this is all extra calories that will be contributing to my current weight gain. Does this sound like a low blood sugar event? I am hoping some kind souls out there could give me some info on 1) how you safely reduce your daily calorie intake so you don't gain weight, but don't have hypo symptoms, 2) How do you eat in the evening so your body has enough blood sugar to get you through the night. I'd like some sleep soon! haha! FInally, Kateybg could you please briefly explain to me what mast cell activation is and how it affects Dysautonomia. My GP has suggested i take Cetirizine 10mg daily, but i'm not sure i have that problem, Thanks to all in advance, Best Wishes, Mike

Hi All, it's been a little while since i've posted thanks to ongoing insomnia, but i wanted to give something back to members for helping me out with my initital posts. I'm sure many of you will know about this stuff, but for those that don't it may be worthwhile giving it a go. basically i've had 'apparent' IBS since my early teens (when my FMS first started), - i'm now 45. I say apparent, because IBS is really just a term for "we don't really know". Anyhow. I've always just put up with it until a very bad dout of IBS-D which lasted some 18 months. I was literally in agony the whole time. I though i may have cancer or something it was so bad. It settled and i got back to living my life. I've just come through another even more severe 12 month bout, again, it was so severe everyone suspected i may have bowel cancer or something (GP, Speialists, me, etc). it was truly awful time. I spoke with a friend who nearly died with unexplained stomach/intestinal issues which lasted four years. he recommended i try a fermented milk drink called kefir. I went online, researched and purchased some fresh cow and goat milk kefir grains and fresh water kefir grains. It took a couple of weeks until the grains started producing kefir. i started drinking a small amount at first - perhaps 100mls, within four days i was a different person. My IBS literally improved almost overnight and was totally gone by the fourth day! In addition, my bowel habits and waste (sorry) or normal for the first time in over 15 years. Even better is that my typical CFS/FMS symptoms also subsided massively at the same time. So for the first time in over a decade i have a suprisingly little amount of aches and pains. They're still there, but nowhere near as bad. Shame the Dysautonomia has screwed me up so much! I would be a renewed person otherwise. It would be so easy to say perhaps all these issues rresolved themselves on their own, but i really don't believe that. It seems to coincidental that my CFS/FMS should suddenly imporve at the same time. I should perhaps point out the both my CFS and FMS are considered to be very severe. You may want to visit the YeeMoos website, and read FAQs section for detailed info. Anyway i hope this helps some of you :-) Take good care, Mike :-)

Hi Little Blue jay, i just thought i'd chip in. I'm new on here, but i can relate to you. I've had Dysautonomia since at least 20 months ago, when symptoms became really noticable. I've always struggled to get to sleep because of severe Fibro/CFS pain, but it's never really been a big problem until reently. I began with chronic insomnia since the beginning of June - it's still ongoing. I'm on day 60 today! i also have CFS/ME and FMS, so this is really not good. I'm averaging 0 - 1.5 hrs. sleep per night without any medication. If i take 2mg Diazepam i may get 3 - 6 hrs. if i'm lucky. If i've had a night with almost no sleep i can get 8 hrs. with 2mg Diazepam. Problem is i hate taking the meds. They can be very addictive, but apparently not at such low doses. I have a very good GP luckily, and we have figured out that although i am not technically hypoglycemic, i display all of the symptoms. This is also commonplace for Dysautonomiacs from what i can gather. What is keeping me awake is a loud forceful heartbeat. It isn't fast, but loud. i think my blood sugar is dipping too low during the night, which is causing an adrenaline release to compensate and boslter blood sugar levels. My GP concurs. I'm currently taking low dose Bisoprolol Fumarate to quieten heart/lowerblood pressure. This is helping, but it's not fixing the problem. I think the trick will be to solve overnight blood sugar dips in my case. Hope this helps put you at ease a little. Chronic insomnia isn't nice, it fact, it's awful, but you'll survive! I am somehow! haha! Hang in there and take care, Mike :-)