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Mikey69

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Everything posted by Mikey69

  1. Hi Rose 11, I've had chronic insomnia since the beginning of June last year. Tried Zopiclone, Zolpidem (sleping meds) Aterax (anti histemine), Amitryptaline (anti depressant), various OTC medications/preparations - hops/lavendar pillows (may have helped), Valerian (defo a good one for most people), other Valerian combinations - such as passion flower. The most successful was 2mg Diazepam - however, this was only partially efective - sometimes it just didn't work. I'm a deeply spiritual person and even tried overnight meditation, etc. however, this proved to much to cope with over 4 - 5 nights with no sleep. What helped me more than anything was reading "No More Sleepless Nights' by Peter Hauri and Shirley Linde. It's actually one of the best books i've ever read! And i've read a LOT of books - i'm an academic. It's a superb book. I would recommend it to anyone with sleep issues (which is probaly most of us!). I now use Diazepam in an extreme emergency, but avoid it as much as i can. What helps is blackout blinds (dark room), good sleep hygiene, but not evey night, dimmed lights (essential), no tech after 10pm (but do have some tech nights if it's relaxing - i.e. watching a short vid, etc). i managed to reset my body after two months of almost no sleep. It took a lot of hard work and effort. Good sleep hygiene was essential. If you aren't a meditator/relaxation technique person i strongly recommend that you learn - it's really beneficial. i think the main thing for me was to practise acceptance - this is how i am now, i can't sleep, but it will pass in time, etc. State of mind is everything with insomnia, as it changes our brain chemestry, which is why it feels so awful. it seems that insomnia is now a well recognised symptom of Dysautonomia, Pots, and many, many other chronic conditions. I can't think of anything else at this point, but i'll let you know if i think of anything else. I hope you feel better soon, Mike :-)
  2. Hi All, thanks for sharing your experiences of the 'not so impressive' medical profession. A certain black and orange lispy quacking Warner Bros. character springs to mind when i read your posts. Only i think i would change the 'Daffy' to "Dafty" or perhaps something much more 'flowery' as kateybug suggests! :-) I guess it's fortunate for me that i'm a male - at least doctors can't pull the 'you're just neurotic' rubbish on me! I imagine that must feel very demeaning - especially if it's sprouting forth from the typical 'male chauvenistic consultant' who has apparently replaced both his brain and mouth with a proverbial dustbin, along with it's less than savoury contents! hahah! :-) I should be shocked, but i'm sad to say i'm not! What a sad state of affairs in this day and age. For my part, i intend to do all i can to ensure that the GP i saw will not try this with anybody else! I have been beavering away on a somewhat satyrical formal written response, which, I hope will be a useful educational tool for all of the staff at my GP practise. "THATS ALL FOLKS" Mike :-)
  3. Hi All, thanks for takng the time to read my post and respond :-) It's very interesting reading your experiences of this weird symptom. I've awlays been a 'happy go lucky' type of extrovert!! It keeps me sane through all this - if you excuse the pun. i first experienced derealization with the onset of Dysautonomia some two years ago. Thankfully it was only very mild back then. it used to make me feel somewhat detached from the rest of the world/reality. I also had - and still have pretty severe brain fog/impairment. Over time the detached sensation became more profound. I honestly didn't know what it was, and so assumed it was just a weird new symptom of Dysautonomia or IBS. It was happening every day for a while and that's when i began calling it a 'dyssy fit' - i like that, so i'm sticking with it! In recent months my Dyssy fits have further develped to include Depersonalization too. I HATE this feeling! It's always combined with Derealization and it just makes me feel lke an empty shell inside. There's just nothing - no emotion of any kind, no feelings, it's like i've become an automaton or a robot or something. I can think pretty clearly, am relatively coherent, etc. But i just don't feel human, i don't feel anything! Fortunately these sensations have only been short lived - perhaps a few hours at a time. When they occur i just keep telling myself that they will pass, it's temporary, etc. I should point out that i have never had any low mood/depression issues, mental health problems, etc. I'm deeply spiritual, i meditate frequently, love who i am, etc. In fact, i'd go as far to say that i'm very happy, despite all of the health problems. I honestly didn't know what was going on for over a year. I was beginning to wonder if i was getting depressed or something. After a LOT of painstaking research i finally came across Derez/Depers. and it all suddenly made sense. Now i'm on a mission to find ways to combat it's effects. I'm struggling with the derez, because i haven't found anything to shake off the detached sensations. I try to keep myself busy and engage in sensual activities - something that uses my body andor senses. i haven't had a Depers episode in over a week now, but i am working on the theory that if it makes me feel inhuman, unemotional, dead inside, etc. then i have to find ways to remind myself that i am a functioning emotive alive being! So, i'm thinking sensual activities again - nice baths, quality time with my partner, being outdoors, etc. Anything to remind my senses that they are alive and working. Hobbies, fun tasks, etc. I'll let you know how it goes :-)
  4. Hi all, So, as some of you will know i'm new to all this Dyssy stuff. I started getting weird new symtoms some two years ago, which started slowly in minor ways, and they have developed over the past two years to overtake my life! One diffuculty i had when dealing with GPs was being able to explain some very strange 'head symptoms', changes in consciousness, etc. After much research and descriptive writing in my health journal i came accross Depersonalisation/Derealization disorder. Ths was it! This is what i was experiencing! i was just wondering if anyone else on here has experienced either/both of these? Cheers in advance, Mike
  5. Hi Guys and Gals, I hope you are all as well as you can be and in good spirits? Ok, so i had a rather disturbing meeting with a GP yersterday, i don't suppose it's funny really, but i do find it comical, so i thought i would share - i may cheer some of you up. Hopefully it won't enrage anyone, because i'm sure lots of you have had similar experiences. So, i couldn't see my usual GP, who is awesome. My usual GP has listened to everything i have said to him, has supported me throughout the past two years of Dysautonomia, and my diagnosis was made by negotiation between myself, my GP, a cardiologist and a neurologist at one of the UK's top Nuero centres. I saw a different male GP who i've seen before. I was never sure about him, but he seemd ok for the simple stuff. I have seen him a few times previously for Dyssy stuff, and he appeared to listen, and did order tests, so i guess he was ok. He was also very amusing an approachable. So, i saw him yesterday to discuss an ongoing problem with botched minor surgery and for an long standing problem with erectile dysfucntion, and more recently the inabilty to ejaculate normally. I also wanted to know the results of a MRI brain scan - I still don't know how my cauliflower is!! (no results as yet). i suggested i thought my 'man problems' were likely due to Dysautonomia - this is the point where everything changed! He suddenly asked me how i was doing - i told him honestly that "i'm crap thanks, but i'm dealing with it" He then asked me how i feel about it - Again with complete honesty "P****d off, i'm 46, i have no job, no financial security, etc, but i'm working on it" He then said that he's been wondering for some time when to have "a difficult conversation" with me..ooh err This is when the alarm bells went off in my head! He then recounted a story of a female 'psyche patient' who apparently thought she knew what was best for her. Turns out she didn't and she had to submit to her GPs and Psychologists opinions/treatments. He then wrote down three codes without explanation: ICD-10, F45.3, F45.0. He wouldn't explain what they were - the plot thickens!, but i knew this was something to do with mental disorders, etc. I challenged him for more information - he refused! Weirdo!! What use is that!?!? He warned me that i may not want to ever see him again. He then sent me on my merry way because i'd had my 10 minutes! This experience is getting stranger by the minute! So, I go home and look up the codes - guess what! In his expert medical opinion i either have 'Somatisation Disorder' or Autonomic Somatisation Disorder - this is what the two 'F' codes refer to on the ICD-10 - which is the International Classification of Diseases. Wow! I was so impressed, i mean really, he's only seen me a handful of times, doesn't know me at all and he diagnosed me so quickly and easily! haha! I couldn't stop laughing for a while, my partner was furious he'd even suggest that!.... She ranted and a chuckled a while! So, according to him, the fact i can't ejaculate any more, keep collapsing if i don't eat a diabetic diet, can't regulate my heart/cardio system and blood pressure properly, and can't control my pain levels is all my fault!! :-) (This is just to mention a few of the autonomic process that have gone awry over the past two years). He was basically saying that in his opnion i'd inadvertently caused phyiological responses to occur in by body as a direct result of my psyche! Wow! Cooll! Surely if i could do that i could cure myself!!!???!!! hahahaha! He then quoted Occams Razor - i.e. the simplest explanation is usually the correct one! REALLY! Then how come CFS/ME, Fibromyalgia, Lymes disease, Diabetes, Parkinsons, and many, many more 'conditions' were all considered to be 'psyche conditions' until they were proven to be physiological? Sadly, many of these patients were institutionalised over the years for their apparent 'stupidity'! (More accurately the medical professions stupidity!) The best bit of all is that his opinion is directly opposed to that of my usual GP, my cardiologist and neurologist, who all concur with the diagnosis of Secondary Autonomic Neuropathy as a complication/development of Severe Fibromyalgia and CFS/ME. Hmmm - i don't know who to believe! hahaha! Awesome! Clearly he didn't read my notes beforehand - even though he stated that he had. Perhaps he got my notes mixed up with Santa Claus or the Tooth Fairies!?!?! hahaha! I wonder if he believes in Unicorns and Dragons too!?! On a serious note, this isn't actually good; because i now have to take the time and more importantly - energy (in short supply) to respond to this formally in writing. i cannot let this go, because i cannot allow an unproved psychological condition to be on my records if i don't have one (which i don't!). i can only begin to imagine the difficulties this would cause in the future if i wanted/needed more tests, etc. if my records stated i was psychosomatic! I wonder if this is why it took years of my asking for a Brain MRi for it to finally happen??!! So there you go! What have i learnt form this experience? That after being ill for over 3 decades there is still so much disbelief, misconception, and damnright stupidy amongst the medical profession here in the UK. Looks like the old 'Yuppie Flu' label is still lurking amongst us! I hope this has been an enteratining read for some of you at least! Please stay well and take good care Mike
  6. Hi Ancy, omg! that's awful. I'm so sorry you are having to go through all of that. I must admit that my knowledge of Gastroparisis was/is very limited - your post really helps me understand better. Please, there is no need to apologise. I understand the frustration all to well! I've just had yet another hypo! yaay me! I think i may have the opposite problem to you. I'm convinced i have accelerated GGT. It's something i'm going to speak to my Gastro about in mid - Feb. I have sooo many questions - and so few answers! lol! Hi Debbie Rose, thank you very much for providing the website info. and for your insight of your experiences. I have always eaten well/healthily, etc. I have been trying to educate myself on hypo/diabetic lifestlyes since this roller coaster ride first started. I'm doing ok - i haven't collapsed in a while, which is always helpful But i know i still have some way to go. I've just had another mild hypo! I'm glad i've stopped counting - i ran out of fingers and toes ages ago! hahaha! I will definitely be visiting those websites! And i will look into the other advice you have provide, although i suspect i'm already doing most/it all. Hi M@t, I'm in Lancashire. The whole BP thing is fascinating, if not annoying!. I never thought i would develop high blood pressure. I've always been a real fitness freak, I really look after my body, so there's no way this should have happened under normal circumstances. It's all so **** bizarre. I used ot know my own body so well, now i feel like i'm living in a stanger! Weird! (This is me!) I used to do the chocolate bar thing too, but waist size was becoming a problem! And, apparently it's not the right approach anyway, so i've been experimenting with the 'right' foods and drinks for the past 6 months or so. I tihnk i just need to knowledge and practise. I also get the impression that sometimes nothing helps. I was eating 4,000 cals, per day last June, just so i did't lose catastrophic amounts of weight! yuk! I hated eating so much! (I'd post a puking smilie but there isn't one!). It magically righted itself! - no one can explain this! Hi Corina, Jeez 2.1! wow! that's ****** low! I can't believe you weren't on the floor at that! You must have felt terrible! I have been on the floor at 4.7! I hate the way hypos make me feel! They really frustrate me (I'd swear, but it's just not nice!!) I reckon it will turn out to be a weird 'Dyssy' thing too. I'm still struggling to tell the difference between POTS and hypos some of the time. I'm sure my poor foggy brain will figure it out at some point! One of my problems is i'm getting typical hypo symptoms with massive variations in BS. Anything from 5.2 - 3.9! God knows! I think my body has suddenly gone totally nuts! Well, they say pets are like their owners! And i've always been a little crazy!
  7. Hey, Corina, Ancy and Kateybug! I trust and hope you are all well? (As can be), I wish you the very, very best for 2016. Let's hope we all have a better/good one
  8. Hi Faye and M@t, it is a pleasure to meet you both Hi Corina and Ancy, it's very good to chat with you again. THank you all for taking the time to reply to my post. I am hoping others may pick up this thread and maybe between us all we can figure something out! Interesting that our blood sugars appear normal and yet we present with hypos. My lowest BSA has beewn 3.7, 3.9 and a fair few low fours. Here is the UK there is a saying amongst diabetics that "if it's 4, you're on the floor" I can be symptomatic at 5.4 and yet can very occasionally be ok at 4.5, but generally, if i'm less than 5 i'm in trouble. I saw an Endocrinologist a few weeks ago, and he hadn't even heard of Dysautonomia, much less the problems i am having. I explained it all, took in some posts from this forum, and he honestly didn't know what to do with it all. I have my 2nd appointment with him in a few weeks - that should be fun! Faye and M@t, sounds like we were similarly active and careful how we ate before we became ill. I was (still am!) a fitness freak. I'm determined to get myself stable then i can get properly active again. I hate this ill crap! Corina, hypos with no warning!? That's awful. I get a very small amount of warning, perhaps 5 mins. where my head/consciousness starts to feel really weird, if i don't eat immediately i become dazed/confused/weak/dizzy, etc. If i still don't eat i quickly reach the point of collaspe. WHat i go through is bad enough - but at least i get some warning. Ancy, the only drugs i am on is 1.25mg Bisoprolol, for unexplained high blood pressure. THis could indeed be having an impact, but i suspect the moving less and having to eat more is the problem. If you don't mind my asking Ancy is tube feeding your only way of receiving sustenance? Is that the result of Gastroperisis, Dysautonomia or both\/ \i'm sorry, i don't mean to pry, i'm still trying to understand Dysautonomia and all it's effects. I can tell you all this much, i'm determined to figure this out somehow. I will of course keep you all updated with my progress, Mike
  9. Hi Sarah, It's lovely to hear from you You will i hope excuse my absence from the forum - my Dysautonomia continues to make my daily life challenging! That being said - i am now sleeping better. I would call it sleeping well, but definitely better. I am approaching 3 weeks without Valium! No more feeling like this haha! So i'm not complaining (Don't like to moan if i can help it). We had a lovely time, despite me especially struggling. My 'IBS' is proving to be unmanageable once again. I still enjoyed Christmas dinner a great deal (I LOVE MY FOOD! - haha!) despite feeling as though i had been stabbed and kicked in the stomach by the local very unfriendly neighbourhood elephant! Life's too short to be miserable, don't you think? It's hard sometimes, but i refuse to let this thing beat me! I suspect it will take me some considerable time to adapt, but i'm working on it. I'm hoping my lady will join this forum at some point very soon, she has soo many questions that i can't really answer. She finds considerable comfort reading the helpful and informative posts from lovely people like yourself and Kateybug, as well as al the others. They help her feel she is not alone and that there are others who will understand and not judge her. I hope you got to enjoy the festivities with friends and family? Take good care, Mike
  10. Hi all, Ok, i'm sure the answer to this will be yes, because Dysautonomia seemingly plays havoc everywhere in the body, but i just thought i'd check I began to experience apparent Hypos some 10 months ago. I should mention that beore this i never had any issues with eating/blood sugar - except very severe IBS type symptoms. In fact, i could miss meals, as long as I ate small snacks, or i made up for it later the same day. I was on a sensible weight loss regime - eating very healthily, exercising when i was able, having small daily calorie deficits, etc. The weightloss was slow and gradual - and i went from 13.5 stones - 11.8 stones. Needless to say i was a very happy bunny! Then the hypos started - as did my need to eat more frequently = me not as happy I am pleased to announce that changing how i eat has made a huge difference. I haven't had a 'full on' hypo for months now - needless to say i'm really happy about this. I now eat three smaller meals a day, and 2 - 3 in-between snacks as required. I typically eat breakfast around 9:30am, a snack around 12pm, lunch around 1pm, snack around 3pm, dinner around 6pm, snack around 9pm. There is some variation 30 mins either side. Whilst this has stopped the awful severe hypos (i would be on the floor very frequently) i'm still having problems. I have been slowly putting weight on, despite being very careful and there seems to be little i can do about it.I want to be able to look down and still see my big size 12 feet! Problem is that i need to eat less and move more, but i can't do that at the moment because of how ill i am. I've reduced meal calories and replaced some faster release foods with slow release foods and I find i still need to eat every 2 - 3 hours. If i do miss out on a snack I find that i quickly become moderately symptomatic with typical hypo head/consciousness symptoms some time betwen the 'missed snack' and the next meal time. This is at best. At worst, i simply cannot miss a snack if i want to avoid having a hypo. Basically, I can't train like i used to, so i'm relying on walking nearly every night for 30 mins - 1 hour, and doing as much activity as i can around my home. I'm trying really, really hard to control my food intake, both what and when I eat, and i 'm finding i'm having to overeat by some 300 calories in order to prevent hypos, hence the unwanted gradual weight gain. I hate the fact that i'm having to over eat. I want my 6 pack back! Has anyone encountered this problem? I'm finding it all very frustrating! Oh, i should mention that i have been a fitness freak my whole life and an very au fait with diet, lifestyle, physical activity, etc. Thank you! Mike
  11. Hi all, I just wanted to post my (delayed) very best wishes to you all - my recenly discovered 'Dyssy Friends' for the New Year :-) i hope 2016 brings us all improved health and support and a better quality of life. May our lives be filled with much fun and joy! I was thinking of you all over the Christmas/New Year festivities, Please take very good care, Mike
  12. Hi All, thanks very much for taking the time to reply to my query. Please forgive the delayed response. I have been profoundly ill for the past week or so and computer use seems to make me much worse afterwards. All i can do is apologize. I really appreciate your efforts. At least i know i am not alone with this issue. yesterday was a terrible, terrible example of this problem. I awoke very fuzzy headed, had to force myself out of bed - a real struggle. I used my PC for an hour or so, and noticed my head was feeling worse than usual - really profound change in consciousness, not sure how i'd describe it - it's like severe mental side effects of medications? detached, spaced out, etc. i couldn't even speak properly for much of the day. I was like this all day/evening, and my head only began to clear around 11:30pm. I was totally clear headed by 1am. I went to bed and of course couldn't sleep because my mind/body was nice and alert once the symptoms had subsided, so i had an almost sleepless night :-) boo! I think the changes in consciousness are perhaps one, if not the most difficult symptom for me to deal with. i hate mind-bending experiences - it's why i don't really drink alcohol. The Dysautonomia really is crazy! I never know where/how i am from one day to the next, and even one hour to the next at times. I used to feel that i knew my own body very well - now i feel like i am existing in a strangers body that i simply don't understand Crazy stuff! THanks again, Please take good care of yourselves, Mike :-)
  13. Hi Ancy, Navyblue and Kateybug, Ancy and navyblue it is a pleasure to meet your acquaintance. kateybug, it is good to hear from you once again, Please accept my apologies for the delayed response. I have had a very rough few days. Thank you to the three of you for taking the time to reply to my query. It seems like an odd problem. My Gi specialist suggested i was air swallowing when eating/drinking, but i know i'm not, and i've told him so. I've asked him to keep an open mind and to consider other causes. I'm currently waiting to hear from him regarding a lot of tests we requested i complete, so we shall see. But at least i can let him know that others have had similar issues, Thanks again, take care of yourselves, Mike :-)
  14. Hi all, this may seem like an odd question but does anyone experience prolonged bouts of continual belching? I ask because this was never an issue for me - even though i was always a fast eater/drinker. My IBS-D has settled down loads of late. I'm still getting the odd problematic day here and there, but i'm not in constant agony running to the bathroom all day like i was a few months go. During my last very severe bout (18 months) i noticed that i developed a belching problem. It comes and goes. Sometimes i'l be ok for weeks, then i will go through a bad spell, where i will be belching constantly for a day or more perhaps every 20 seconds or so. THe longest spell was 24+ hrs, day and night with no respite . It stopped me from sleeping. I'm having a belching day today, which is accompanied by mid sternum cheat pains and a sore xyphoid process. I am very careful what/when i eat. I don't air swallow, etc. I eat slowly, chew properly, etc. And apparently i don't have any food allergies, I would be interested to know if others have this problem and if there are any successful treatments, etc, Thanks in advance, Mike
  15. Hi all, I hope you are all doing as well as you can be/are having a good/better day, etc :-) I have been working hard to improve my symptoms any way i can so that i can gain some quality of life back. i have been keeping a detailed health diary and have started to see a pattern. I tend to be more symptomatic in the earlier part of the day, and tend to be a lot better by early evening, and feeling much more like myself mid/late evening. Just to recap: I have severe CFS/ME, severe Fibromyalgia, Dysautonomia. My prolonged bout of insomnia is much improved. Just gone 16 nights without sleep aids (though i had to take 2mg Diazepam last night to calm CNS - pounding, rapid heart). I'm still battling with unexplained high blood pressure (153/92 has been highest). And am taking 1.25 MG Bisoprolol to lower it. I'm still struggling to maintain my blood sugar. I'm much improved by eating 3 smaller meals and 3 snacks in-between meals. But i had a crazy sudden, unexpected, very severe 'hypo' yesterday despite changing how, what, when i eat. I tested 4.2 at the time. I was so close to collapse. I've not been that bad in some months. I always wake up feeling dazed, out of it, etc. And it takes perhaps an hour for my body to 'wake up' - I never know how i feel/what kind of day i will have until my body awakens. It's as if i'm almost symptom - free for this period. This is what i've noticed: My blood pressure is always highest in the morning and settles to a healthy range by the evening (115/73) I nearly always have bad palpitations in the morning, reducing in severity in the afternoon, and/or very mild/none in the evening I never have hypos in the evenings. It's usually late morning/midday, or less frequently in the afternoon. If i have changes in consciousness (Derealization/Depersonalization), it's usually severe in the morning and gradually settles throughout the afternoon. I'm usually clear headed by early/mid evening. My IBS-D is often very severe in the morning and tends to settle somewhat throughout the day, and is usually much better during the evening My theory is that when i awaken in the morning there is a 'delay' period of 1+ hr. where my body/CNS is perhaps still in 'sleep mode', so i experience almost no symptoms. (nerves not functioning yet, digestion not functioning yet, etc). Then my body slowly begins to function again as it switches to 'awake mode', - sensations/symptoms then begin. I suspect i have the palpitations because i am becoming active before my body is ready, and it over-compensates, etc. My body eventually 'catches up' with my activities at some point during the day, responds more normally, and i am less symptomatic. Does this make sense? I'd be very interested to know if anyone else has a similar daily pattern, Thanks in advance, Mike :-)
  16. Hi Lindz, I simply HAD to reply to your post above. i have always struggled with impaired brain function since the onset of Fibro in my teen years. This then worsened with the onset of CFS/ME in my early 20's. I too thought i was going senile/developing dementia, etc. This was very scary for me because i value my mental faculties so much since my physical body stopped working properly. i was kinda happy with where i was at with my life/health until the onset of Dysautonomia some two years ago. There was been another major decline in my mental faculties. Both my long and short term memory has been severely affected. I have lost so many important memories. It's now very difficult for me to remember new information, such as a BP reading taken two minutes before i write it down, etc. I even struggle to remember what i have eaten earlier, what i did earlier, etc. I don't think age helps with tis because i am in my mid - forties, the time when certain brain changes cause memory lapses, etc. Oddly enough i can still cope very well with multi tasking, etc. But i am one of the lucky ones in this respect. Almost everyone i know with CFS/ME and FMS can't multi task. And i suspect the same may be true of Dysautonomiacs. I would suggest that your problems are definitely Dysautonomic rather than Dementia related. I was getting so concerned about my brain function that i ended up doing several Dementia diagnoses tools, which you can find online, just to reassure myself that i wasn't losing it. Ultimately, if you are really worried i would recommend you seek appropriate medical help, I would recommend caution with regards to anxiety meds. Benzos, barbiturates, Anti hystemines and Anti depressants are all pretty nasty and come with considerable risks in the longer term. Have you considered meditation/relaxation/breathing exercises, etc? They are a MUCH better long term solution, but of course they require a certain amount of practise and dedication, especially in the first few weeks months. To give you an idea of how effective these techniques can be: I do not take any pain medications for my Fibromylgia, and i am considered to be a severe case - hence in severe pain 24/7. The power of the mind is an amazing thing when properly harnessed! Hope this provides some reassurance - you are not 'losing it' you are simply ill (me too!) :-) Please take good care of yourself, Mike :-)
  17. Hi Runnersmom, It's very good to 'meet' you as it wre. I'm afraid i can't really comment too much on Dysautonomia/POTS as it's still all new to me. I'm currently trying to learn all i can so that i can better manage my symptoms. I m guessing CFS COULD explain this. I know nothing about POTS treatments/meds, so i'm not the guy to answer that one for you i'm afraid. What i can tell you is that it is commonplace for CFS to 'start' after gastro/viral infections - see Epstein Barr virus, Helicobacter, gastro parasites, etc, etc. any other stomach infections, food poisoning, etc. etc. Do an internet search for CFS/ME stomach viruses, potential causes of CFS/ME, etc. Mine was brought on by a severe bout of Glandular Fever, which i never fully recovered from. I don't know if POTS can be caused by a parasitic infection, but i can tell you that CFS/ME definitely can be! Do get the health diary up and running asap and make sure your son records every symptom, no matter how seemingly insignificant/unrelated, etc. The best way to diagnose CFS/ME is to rule out all other long term conditions via 'the usual' medical tests and by someone who is very familiar with CFS/ME analysing a detailed health diary. There are also some other long term health conditions that can be triggered by waterborne parasites such as Lymes disease (and others i can't remember). Have these possibilities been tested? Most waterborne parasites 'damage' the physical performance of their 'hosts' in an attempt to complete their lifecycle, (by creating 'favourable conditions' for themselves within their host), which can, and often does include the use/damage of several hosts. Tell your son to hang on in there. Things WILL get better once you know what you are dealing with, Hope this helps, Mike :-)
  18. Hi Runnersmom, I'm afraid this will only be a brief reply, as i'm struggling atm. I'm a 46 year old male. I've had severe Fibromyalgia since age 13 and severe CFS/ME since age 23. Also developed Dysautonomia in past two years. I am very well read on CFS/ME, having written a book on the illness and worked with many, many sufferers over the years. In short, i know more then any GP and consultant i have ever met. With the greatest of respect I can confirm that the Cardiologist you saw obviously knows very little about CFS/ME, which isn't surprising, given his area of expertise. It sounds like he is 'generaliszng' to me, which is what most medical professionals tend to do when they are out of their 'comfort zones'. I can confirm 100% that many, many CFS/ME sufferers never experience joint pain. In fact, i know several who never experience pain at all. There is a huge spectrum of symptoms with CFS/ME, which is not surprising, given that we all have individual genetic makeups - this is what makes it so difficult to diagnose. The symptoms/difficulties you describe certainly sound like typical CFS/ME. I'm still learning about Dysautonomia myself, but it would seem that Dysautonomia can also cause similar/the same symptoms and difficulties. In recent months i hve also learned that Dysautonomia is a recognized complication of CFS/ME and Fibromyalgia. My advice would be to get a second opinion from someone who actually know what they are talking about (a CFS specialist?). i recommend doing some research into 'CFS friendly' medical practitioners and clinics, etc. I also suggest you keep a detailed health diary for a few months, as this is an invaluable diagnostic tool. Does your son have any other symptoms - Nose/sinus pains (Rhinnitus), post nasal drip, headaches, digestive problems - IBS type symptoms, etc? Have a look at an extensive list of CFS/ME symptoms and see how many he can tick off. Hope this is helpful, Mike :-)
  19. Hi Kateybug, I trust and hope that you are as well as you can be? Sorry, just to clarify what PIP is: PIP is Personal Independence Payment. (a UK only benefit) it is a new disability benefit, which replaces the older Disability Living Allowance. It is intended to support the more severely ill UK citizens. Currently in the UK there are two 'main' benefits the sick and disabled can claim; 'Employment and Support Allowance' (WRAG and Support Groups), and 'PIP'. These can be a 'passport' for other support, such as Housing Benefit and Council Tax benefit, BLue badge, etc, Mike i hope this clarifies the situation for users of the forums.
  20. Hi 25gong on 80, I have severe CFS, severe Fibromyalgia, and have developed Dysautonomia in past two years. needless to say i am rather unwell (understatement). I have much experience of CFS/ME and FMS, Dysautonomia is new to me. I have written a book on living with CFS and FMS here in the UK, and have had many, many dealings with the state benefits system. i am also an academic, and one of my main areas of interest/research is disability/society, etc. best advice i can give atm is three-fold: 1) Visit the Benefits and Work website, pay the subscription and download ALL of the information available on PIP. Current PIP legislation is a minefield designed to STOP claimants being successful. The ONLY way you will be successful in your claim to to provide VERY comprehensive details in your PIP form and more importantly, in any 'additional information' you enclose with the form. Get letters of support from your GP, specialists letters, etc. 2) If you are being visited at home have someone with you to witness the visit. Have your witness make notes. Further, you need to record the whole thing. The DWP have very specific rules regarding recording, so you will have to meet those requirements (not easy), If you can't meet those requirements try to record surreptitiously. (They MUSTN"T find out). 3) prepare your home. The assessor WILL be looking for ways to dispute your claim. basically, your home MUST match up with details in your claim form. For example, if your form states you can't reach upwards then having food in a wall cupboard above your kitchen worktops could go against you, etc. If you state you can't stand for long do you have a chair in every room, etc. DON't let them 'use the bathroom/look around your home unaccompanied - assessors have been known to look in cupboards, wardrobes, etc. This is ILLEGAL, but it happens. I know this may seem like paranoia, but believe me it isn't. I will be migrated from DLA to PIP next year. I'm already filling in my form, additional information, gathering evidence, etc. The trick is to be VERY, VERY PREPARED! I hope this helps, Good Luck, Mike :-)
  21. Hi Lindz, have you considered that you may have had creeping Fibromyalgia from your youth years onwards? I ask because a lot of your symptoms fit, especially the burning pains, brain fog, eye pain, tachycardia, weird numbing and tingling, etc. has this even been considered by your doctor? If not, it may be worth discussing. If so, perhaps it would be worth considering again? Epstein Barr Virus is also related to CFS/ME, so again, could be worth exploring? (As you know i have both). Certainly having Fibro and/or CFS/ME could explain most/if not all of what you describe. I'm going to be as polite as possible here, and please do excuse my questions/comments - i'm not expecting you to reply 'in public' on this forum, or even reply to me personally, given the subject matter, but the following is something to think about: Fibromyalgia can cause significant 'intimate' changes for women, (and some symptoms for men) so if you experience any of the following then perhaps Fibro should be looked at? Bladder problems - overly sensitive bladder, painful bladder, frequent urination, pain urinating, cystitis symptoms, vaginal pain (aching/stabbing inside), vulvadynia, vulval pain, etc. menstruation disturbances, overly heavy or light bleeding, early or late periods, painful ovulation, etc. You should also bear in mind that Dysautonomia is a complication of Fibromyalgia - something i have been finding over the past two years or so. In fact, some in the medical profession are now thinking that CFS and FMS could in fact be 'creeping' Dysauonomia. I hope this additional info helps. Oh, and you're not going mad, you are being overwhelmed by a plethora of very unpleasant symptoms, which have yet to be explained. I think we've all been there! I know i have! i'm in the U.K. and it seems that self diagnosis is the way to go because most UK medical professionals are sadly lacking when it comes to FMS/CFS and Dysautonomia. I feel like i'm educating every health professional i see at the moment! lol! Take good care Lindz, Mike :-)
  22. Hi Angelloz, thanks for your kind words. To be candid i was concerned i hadn't represented either myself or Dysautonomia very well. I'm having a bad day today. A 'Dyssy Day' as it were :-) So your words are greatly appreciated :-)
  23. Hi Lindz, i am so sorry you are experiencing such unpleasant and scary symptoms right now. I really feel for you. I have been presenting with a plethora of dysautonomia symptoms for over two years now. I too self diagnosed and had it confirmed by a specialist some two years later. Please understand that i feel i am new to all of this, and i'm still coming to terms with my own problems, but i wanted to reply to see if i could perhaps help quell some of your fears. My background is, i'm male, 46 years old and have fought with severe Fibromyalgia since age 13 and severe CFS/ME since age 22, so i was already very broken before the Dysautonomia complications began. YOu need to understand the kind of person I am next. I'm deeply spiritual, exceptionally determined (I've always fought very hard against my body and have some amazing achievements in my life), a very high achiever, ultra relaxed about everything, laid back, etc. All of this means i've never worried about my health, no matter how severe or scary the symptoms, and i managed all of my problems without resorting to medications. To put this into perspective, it's been proven that i am in so much pain on a daily basis that it is the equivalent of being involved in a serious car crash, or having a severe heart attack, etc. And i manage this via mediation and relaxation - no pain meds of any kind. Two years ago things began to change rapidly, and over time, i found myself becoming concerned at first, then fearful that i was going to die. Symptoms included awful changes in consciousness that felt as though i had taken bad recreational drugs or something (not that i'd really know what this is like), crazy visual disturbances/loss of pupillary response, that would leave me seeing flashing colours of light and not being able to focus my eyes, collapsing on a daily basis (up to 8 times daily) for unknown reasons, (Turned out to be reactive hypoglycemia - my boy can't regulate insulin/blood sugar properly), loss of heart control (my heart wold suddenly go crazy - this could last for minutes, hours, days, weeks), bodywide nerve disturbances, the most awful 'atypical' IBS/vasovagal synocope that lasted some 18 months. (we thought i had bowel cancer or something), Sudden onset chronic insomnia, which i'm still battling with, problems swallowing food (comes and goes). And best of all - i was cycling one day, and realized i couldn't breathe in, so couldn't get fresh air into my body. I essentially missed two in breaths, during which time i literally couldn't breathe. Luckily for me i am super relaxed, and that's what righted the situation. I relaxed and my body righted itself, the muscles relaxed as a result and my body reset the muscles. Low and behold i could breathe again. At the time i just laughed this off as a weird 'glitch', which is what i guess it was. Anyway, my point is over the past two years i have gone through new kinds of **** with symptoms that have even had me scared. (I'm never scared by anything). I even sorted out a will for gods sake! And considered a trip to Switzerland! Nice! :-) I'm still struggling with much of it now, but i have done a lot of research, asked a lot of questions on here (thanks guy and gals for all of your kind replies) and have come to the following conclusions: Dysautonomia won't kill me - it's just **** annoying and can cause v. unpleasant symptoms, which would be very scary if i allowed my fears to rule my head (i won't allow that). If you become symptomatic accept it for what it is - remember that it is a temporary state, that it will pass and that it won't kill you. (My personal mantras). If it places you in immediate situational danger then do all you can to reduce the risks) If driving, stop driving, if at point of collapse when standing, sit/lie down, If hypoglycemic eat immediately, etc. The main thing is - don't panic, it will make the symptoms seem worse in most cases. Do a lot of research - learn about Dysautonomia, understand what is going on in your body and why. Knowledge is power. Once you understand what is going on/wrong you will be able to do more to manage it, reduce symptoms, etc. But more importantly, you should be able to relax more and accept it for what it is. It should help to reduce your fears (I hope). I hope all of this makes sense? I'm not exactly 'firing on all thrusters' at the moment, but i wanted to provide my imput, as i know how scary Dysautonomia can be, Please take good care of yourself and remember that you are not alone with this, All my very best wishes are with you, Mike :-)
  24. Hi Sarah great to hear from you again. Your comments regarding excess stress hormone production are very interesting indeed. i will do some research into this at some point very soon and let you know if i find anything of interest. i am very sorry to know that you have issues with 'fight or flight' response - it must be quite awful for you when it occurs. It seems i too may be experiencing similar at times. I consider myself very fortunate, in that i am a deeply spiritual person - I am very good at deep mediation and relaxation techniques, and i am so relaxed about things i've been told i'm horizontal/asleep, so i tend to just take these things in my stride. However, i would be the first to admit that the Dysautonomia has had a profound impact on my mental well being. I'm pleased to say that i'm getting my confidence back. I'm now walking up to four miles in the middle of nowhere several evenings per week. It has taken me a while to build up to this, and i must admit to feeling concerned/worried/unsettled when i first started doing this again. So i can appreciate your comments. Your therapists comments are interesting - i wonder how much truth is in that? it's interesting that you experience these symptoms more in unfamiliar places. When i started walking in the countryside again i realized that the further away from home i was the more uneasy i felt. i think this was because i realized that the further i walked into the countryside the more vulnerable i became, because retrieving me would be more difficult if i did need urgent medical assistance. I overcame this by thinking "well whats' the worst that could happen" - i.e. (see above post) - "this thing won't kill me, etc. so just get on with it". It's mind over matter. Trips to the mall sound like fun. I must admit that i try to avoid shopping malls like the plague! I'm more of a countryside/open green spaces fella, so i keep my energy for the 'great outdoors'. i can't honestly thank you enough for all of your kind support and comments Sarah. You have been such a big help - as have the other kind souls on here that have responded to my posts :-) I am a very lucky man Sarah. I have the most amazing partner, she is wonderful! Her new diagnoses were a bit of a shock to say the least, but she is handling it all very well indeed :-) Please take good care of yourself Sarah, I look forward to future conversations with you, Mike i walk as much as i can. Although i have very limited understanding of Dysautonomia, as it is still all new to me, I have learnt that keeping physically fit and active is vital to long - term health.
  25. Hi Targs66, it is a pleasure to meet you. Thank you so much for taking the time to reply to my post. Your efforts are appreciated. i too had/have? an unshakable personality. I have had many unbelievably unpleasant health - related events occur over the years, which have nearly cost me my life on a few occasions, which friends, family and aquaintences have told me were apparently very scary. I guess i just shrugged them off and comforted myself in the knowledge that i was still alive and that they were temporary states of being etc. I'm having another 'Dyssy fit' day today and it has been very unpleasant indeed. Once again, i find myself feeling a little moved/upset by how i'm feeling? This isn't like me at all. So i do wonder if your theories about chemistry are correct. To be candid, i've collapsed numerous times over the years, and been at the point of collapse even more times of late. Especially when the apparent hypos were occurring and i didn't understand what was happening to me. I just used to try to carry on and work through it. I was never really scared - i guess i've been there so many times its become the norm? But this seems to have changed in recent weeks/months. i don't get scared or anxious because deep down i know it's probably not life threatening. Nevertheless i am finding myself reacting emotionally on some level. i think it's a subconscious thing though because i never let myself get worked up about anything. That being said, it has knocked my confidence somewhat when i am out walking alone in the middle of nowhere. last time i walked alone at night i found myself planning what i would do if the worst were to happen - calling an ambulance, planning where best to walk so i could be more easily found, etc. Nice eh? Needless to say i didn't need medical assistance! Silly eh? I don't know if this will help or not, but the bottom line for me is that i know my CFS/ME and Fibromyalgia, and now Dysautonomia probably won't kill me - even if it makes me feel like it could (and it frequently does!). Also, no matter how bad i feel i know that it will pass in time an that i just have to ride it out. This always helps me, even on truly dire days/weeks/months. This became especially important during the past 120 days or so when i was plagued with awful insomnia every day. I honestly don't have the words to explain how ill i have been since the insomnia began. But, i know it will pass. As for collapsing, i've done lots of that over the years and it has never done me any real harm. It's just really, really unpleasant at the time. I take some comfort in the fact that our bodies are designed to collapse at times as a protective measure. So for example, If you collapse because of blood pooling in your lower body, this is your bodies way of ensuring that blood gets to your brain immediately - i.e. you are horizontal so it's easier to achieve. if you faint because of low blood sugar, your body immediately responds - releasing insulin, which breaks down fat/sugars to replenish your supplies (i think i have that right). If you collapse because of overdoing it (i've done this lots), you stop when you are unconscious, then you tend to rest a while afterwards, which is just what your body needs. I hope this helps.
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