rach73

Hi Alicia, Thank you so much for your reply. I sweat heavily at night, well actually that's not really true. I sweat heavily when I am asleep. So thats even when I nap during the day. I don't sweat much during the day, just normal for me really. When I have woken up at night with the sweating I have taken my BP its always low in the 70's / 40's range. I always feel absolutely terrible and can't read the screen of the BP monitor! Luckily mine records it so I can check when I have come around a bit! My vision started fading before the BM, but I have always been very unsteady on my feet after having a BM, even sometimes just having a tinkle! I have grab rails in my bathroom due to this. Otherwise if I fainted I would take out the shower cubicle LOL Thank you so much for replying, its good to know that I am not alone and I learn everyday from this site. Rach

Hi Julie Thank you so much for posting that, its very very interesting. I will certainly be printing it off for my GP. My ptosis normally comes on when I am sitting down, but I can also wake up with it. However my blood pressure tanks when I lay down. Even though I actually feel better laying down. The other weird thing is my ptosis will sometime resolve if I lay down for an hour and just completely rest. I quite often feel disorientated when I have ptosis but I can still function. All yesterdays posts were done with ptosis, but I felt absolutely terrible. My speech can also become slurred. It would explain why mestinon appears to resolve my ptosis as it would be levelling off my blood pressure. So thank you for that. Poppet K - thank you for your reply. I developed ptosis 3 years ago up until then everything was pretty much normal. My eye doesn't just droop it closes leaving a very small gap, but not enough for me to have any useful vision from it. Thanks so much for your replies. Hugs Rach

Hi Thank you again for your replies......even more stuff to think about. I have visited the Mastocytosis society site and it was very interesting as I see MSG can be a trigger. I thought a while ago I may have an issue with this as after a chinese takeaway....yep you guessed it really flushed red itchy face and neck. It only happened the once and I have eaten chinese since and its not happened again so it has really confused me. It tends to be if I have a reaction I have a bright red itchy face, with blotches going down my neck. Very strange, but the information on the site was very interesting, as it covers a lot of the symptoms I have. Unfortunately I couldn't get up the link to the article on the new york times, but I will have a hunt around and see if I can find it. Like you Julie Im officially allergic to nothing, other than soduim valporate (anti convulsant) face swelled up as did the inside of my mouth, red blotchy again. And augementin (antibiotic) face swelled up, red and blotchy face. I have had penicillen since and had no reaction, but I certainly wont be trying augementin again. These are on my health records but Ive had no formal testing, its just anaecdotal evidence. I do believe that there is more than one thing going on. I do have problems with my BP dropping especially after eating. My heart rate goes mental as soon as I stand up and try and do anything. Ive had a few episodes of fainting in my life, one after dental treatment root canal work ten injections of lidnocaine (spelt wrong), in biology class disecting a pigs head (!) and when I had salmonella. These were all total lights out episodes no warning. Most of the time I have near faints and other people have realised I was going to faint and got me sat down and head between knees! Or I realise the danger signs and lay down. So this episode on Tuesday was not the norm for me. I had a friend round yesterday who is training to be a dr and she was amazed at my BP readings and the fact that just a draft will make my hands go blue. She can't believe that no one will take me seriously. Im in a difficult place at the moment my hospital consultant has dropped me as theres nothing wrong with me and my GP believes that only people with MS or Parkinsons get autonomic dysfunction. So its a bit of a battle but I will get through this. This forum is my life line at present and daily I go through the previous posts and realise that Im not on my own. Thanks Rach

Hi Thanks for your replies, it is certainly food for thought. My ptosis came on in January 2007 out of the blue, initially it was diagnosed as bells palsy. But it doesn't fit the text book description of bells as my lower lid doesn't droop it actually rises and my pupil doesn't sit in the correct position when I have ptosis it drifts out to the side (towards my ear). I don't suffer with headaches when I have ptosis, although if the ptosis is prolonged it will give me a muscular pain in my forehead as the whole right side of my face droops including my eyebrow and mouth. The eyelid isn't swollen, its just discoloured like a very slight black eye. I have had numerous MRI's and CT scans all are negative. I have had SFEMG's and Emgs and none have found any issue with the signals (sorry I just mean to say tests were negative). The ptosis is relieved by an ice pack applied, eye will return to normal after 30secs of ice pack being applied, but will only stay that way for 30sec. Mestinon also works. Saying that the drs believe that I do not have myasthenia gravis. All blood tests are negative. When I have ptosis my vision is very distorted, I have double vision and problems with depth perception. But I have never before had an issue with everything going black like it did Tuesday. I have definately become more allergic since becoming ill. On a couple of occasions now after taking new drugs my face and mouth have swollen and become red and blotchy. I used to be able to take anything and suffer no reaction. It can also occur when I have had no new drugs and food and for no apparent reason. My whole face will become very red and itchy and only antihistamines will relieve it. I do have migraines but they are few and far between. The last one I had was in January 2009. I now get headaches when my BP drops and my vision greys out. Its all very bizarre, but I thank all of you who have taken the time to answer my post. I really appreciate it. Rach

Thanks Leize, It was scary and Ive been mulling over it for a couple of days.

Hi, Just seeking some reassurance really as this hasn't really happened to me before. Two days ago I woke up with ptosis, right eye completely shut - that's not unusual for me. I didn't feel too good so I went down stairs to get a coffee. All of a sudden I had a real feeling of urgency for a BM. So I started back up the stairs, as I was climbing them I was aware that it was becoming really dark. Initially I thought it was due to the ptosis as this distorts my vision. As I got up to the top of the stairs it was getting darker and darker. When I got to the bathroom and put the light on the room didn't light up. I was now terrified I was going to faint and lose control of my bodily functons. I managed to get to the toilet and sat with my head between my knees. Over the space of the next 5 mins the room resumed its normal brightness. I felt ok again and everything just passed. It left me a bit scared though as there was no real warning, nothing felt any different than any other day, other than everything going black. I have never experienced this before, normal near faints for me involve me dropping to my knees, losing my vision. Usually feeling very dizzy seconds before hand. Ive never had it come on like this. Has anyone else experienced it like this? Sorry if this has been covered before, and sorry I keep asking so many questions. Rach

Hi before I got sick 3 years ago I had a photographic memory, you only had to tell me something once and it was commited to memory. Now I struggle to remember if I have taken medication, what shift my husband is working and when he will be home, if he has rung me from work (he rings me at least 3 times during the day- I don't remember), I forget birthdays, appointments. Its like I have very little short term memory. Out of everything I find this the most distressing because I feel totally incompetant. Its such a massive change for me, from how I was. Rach

so sorry for your loss

Hi I grew up in a house where we didn't use salt and mum made everything from scratch. Probably had more salt when I left home due to working and not being bothered to eat properly. I still don't really like salt, although I crave ready salted crisps (chips). This is an interesting thread!

Thanks for this. My sister suffers with ME and I have emailed her the link.

Hi, although I am yet to recieve a diagnosis I hope its ok for me to add some of my personal experiences. It seems quite apt this should come up today having been discharged from my neurologist as theres nothing wrong with me! The medical profession and my family has never been a good mix, saying that I have friends who are Drs but not involved in my care. When I was 2 and a half I suffered an intussception (intestine telescopes back on itself) because I was "too old" (normally occurs in children under two) for this condition although displaying classic signs (faeces coming out like cranberry jelly), horrific stomach pain, my mother was told she was neurotic and the family gp would not refer me. Eventually I got a referal after my father spoke to the Dr. By the time I was operated on the chance of my survival was less than 50%. We were then barred from the GP's surgery and black listed locally. For the next 20 years I suffered with stomach pain. In 1998 it got so bad I could barely eat or drink. I was told I had irritable bowel syndrome. I collapsed later that year with a small bowel obstruction, due to bowel adhesions caused by the original operation. At the moment I am suffering from intermittent stomach pains that feel exactly like the bowel adhesions did in 1998, they start as soon as I eat or drink. That's being ignored as I am considered a problem patient - too demanding because I actually want to know what's wrong with me and won't be fobbed off. Last year I asked for my medical notes from the NHS. They were full of inaccuracies - I suffer with right sided facial weakness and ptosis. It was described as left sided. It also had complete lies in there and comments that I am attention seeking. They also made comments about my mother and how we are a family of malingeres. All without having my mothers or sisters medical notes or ever actually meeting them. So no I don't trust the medical profession, all too often they are nice to your face and then put absolute rubbish in your notes. Maybe Ive just been really unlucky, but I now get very panicky if I have to go to medical appointments or stay in hospital. Rach

Hi Nikki, Ive just googled blood pressure and sleep. From what I can see it is normal to have a 10-20% drop in blood pressure whilst you are asleep, (from your normal daytime BP). However like you I can wake in the night feeling extremely dizzy and my eyes rolling in my head, drenched in sweat. On these occasions when I have been with enough to take my BP it's been around 76/40. Quite often also I will wake up with this and have the urge immediately to go to the bathroom, which is really fun when you are walking like a drunkard! I hope this helps Rach

Thanks for your replies. I'm 5ft 9 thankfully, otherwise I would have been quite rotund! My sister has ME and I believe she has a lot of dysautonomia symptoms also. She has problems with her heart going too slow, then her heart racing. She has worn a holter monitor and they have recorded that. I think many of her symptoms are related to low blood pressure as well. We are like chalk and cheese, she has always been able to eat what she wants and is underweight shes 5ft 8 and about 130lbs max, where as I take after my grandparents and only have to look at food to put on weight! Thankfully I am at the lightest I have been since 2007, but thats not down to dieting its mainly due to nausea and vomiting. But as the Drs say they can't see I have lost weight, despite the fact its heading towards 4 stone now, and they have weighed me reasonably regularly over the last year with 6 hospital admissions, they don't seem to believe me. Thanks Rach

Thanks for all your replies. Its interesting to see that its not just a thin persons disease. I've struggled to maintain a healthy weight all my life. As soon as I left home the weight slowly crept on and its been a battle to get in control of it ever since. I was always reasonably fit as I have three dogs and used to walk the legs off them! Now with limited mobility and even though I hardly eat anything compared to what I used to, Im still overweight. Thanks again Rach

Thanks Mirry, I was getting concerned with seeing Drs - I have been treated dreadfully in the last few years, telling me its all in my head. I was worried that they would think that because I'm overweight I couldn't possibly have this. I used to be so fit, I walked for miles with my dogs. We worked out I was probably walking in excess of twenty miles a week. Obviously when this stopped the weight went on. I took steroids in 2007 also just for a week and managed to pile on a load of weight. It was like the steroids had turned something on in my head and I was permenantly hungry. Then in 2008 I was on them again, a much larger dose and the same thing happened. I had to eat every couple of hours day or night. I was never satisfied. I hate being this big, but I hated being 3 and a half stone bigger more! I did think I saw something yesterday about dysautonomia on the Internet that it can go both ways with food, people can lose their appetite or it can substantially increase. Couldn't tell you where I saw it though. Thanks Rach

Hi, I am new here and this topic may have been covered before. I have seen a couple of posts that have sparked an interest in me. I am just starting out on this crazy journey, it has been this forum which has lead me to believe that I have dysautonomia. I am overweight, I put on 3 and a half stone whilst on steroids in 2008. I have now lost that weight and hope to go on and lose more. Im not dieting I have just lost my appetite, I always feel like Ive eaten and when I do eat I get full quickly. I have another 3 stone to lose to get to a healthy BMI. My weight has crept up steadily due to being so incapacitated before I was placed on steroids, I suffer with terrible fatigue and feel unwell on standing. I get light headed and a pressure feeling in my head. I have a low BP, which rises on standing as does my heart rate. I have dips in blood pressure after eating and I have to lay down. Do Drs believe that only thin people can have dysautonomia? How many of you on here are overweight? Did being over weight hinder your diagnosis? Were Drs less sympathetic? Im really curious as I am going to be speaking to my GP next week and broaching the subject with him for the first time. Thanks Rach

Hi Bella, I just thought I would let you know that I have managed to eat something! Scrambled eggs on toast. It was very hard to eat and it doesn't feel right in my tummy but if I can keep it down that's a bonus. I contacted my gp over a week ago with a long long list of my symptoms and I am yet to hear from him. Im going to ring him next week. I called the out of hours Dr this morning and have antibiotics. Ive been drinking loads of gatorade, thanks! I got that type from another post and it has helped a little with the low BP. The problem I have at the moment is I am just at the start of my journey and have no diagnosis as yet. I haven't even mentioned it to the GP as I discovered this forum after I sent the letter. Im just grateful Im already on mestinon as that does help me with my BP and Ptosis. If there are any mistakes in this post its because I have bilateral ptosis at the moment! Its always so much worse if I am ill. Well sicker than normal I should say! Thanks for the help, really appreciate it. Rach

Thanks for your replies, I didn't see them as for some reason I didn't get an email telling me I had any! OOps, also I'm having problems with the forum as its not displaying all the replies only the names of those that have replied and the first few words from that reply! Bellamia, thanks I have seen that one on my investigation into what is causing this. My fingers and palms are always wrinkled, even before I have a shower! I showered 9 hours ago and they are still wrinkled. Ive tried mosituriser it does nothing. I think I have probably got Raynauds as my hands keep going blue and nail beds are blue. It also really hurts my hands to get anything out of the freezer. I have started wearing gloves now to try and keep my hands warm. When they warm up they go bright red and you get the feeling like when you have been out on a cold day and then come inside. I think its probably dehydration as I am always drinking, I don't think my system is processing it properly. I give up. Bit fed up as I have a kidney infection, feel sick, been sick haven't eaten in three days as the thought of food is making me vomit. Sorry a bit peed off today. Rach

Thanks for the reply, its certainly been something I have been wondering about. Rach

Hi, I'm new here and although I haven't got a diagnosis I can relate to what you are saying. Quite often I will wake up feeling extremely dizzy with my heart racing. I wake up in the middle of the night with it and can feel extremely nauseous and sweating with it, or I can wake up first thing in the morning with it. When I take my blood pressure its around 74/42, when these bouts happen. My heart rate can be 104 -120. But it always makes me feel rubbish and this dizzy feeling may stay all day or may go after a few hours. All I can say is that these symptoms suck, but at least I know Im not the only one with them now I have found this forum. Rach

Hi, I'd just like to say.....again what a wonderful place this is! I'm also going to say sorry if this topic has been brought up before, Ive looked through pages and pages of the forum but haven't seen anything on it. However I can suffer such brain fog that it could have been under my nose and I wouldn't see it! My skin has really changed in the last few years. My skin used to be one of my greatest features, without sounding big headed people used to stop me and ask what products I used as I had flawless skin, I took after my grandmother. I was on steroids for 9 months in 2008, as soon as I started tapering down the dose I developed discoid eczema, incredibly itchy and irritating. I look like a dog that has fleas as I am always scratching! LOL My skin all over my body has changed. However its my hands that are the weirdest. Anyway over the last few months I have noticed that my finger tips and palms are permenantly shrivelled. They are prune like! As if I have soaked in the tub for an hour. Only we don't have a tub here, (we have a shower if anyone was wondering about the levels of my personal hygiene LOL!) , I haven't soaked them in water. I don't use cleaning chemicals without wearing gloves and I try to use only natural products. Its not dehydration as I suffer with excessive thirst and consume between 4-6 litres of fluid a day. No amount of moisturiser makes it go away. I do have a problem with my hands and nail beds going blue with even a slight temperature change, my hands are always cold. I know this is a weird one and Im sorry! Has anyone else heard of this suffered with this? I know its not a strictly Dysautonomia question but I have seen many of you suffer with connective tissue disorders / autoimmune disorders. Any replies to this strange question would be wonderful! Thanks Rach

Thanks for that Anna, I have personal messaged you! Also DD - I have personal messaged you also. I contacted Prof. Mathias today and had an email back within hours. I will be sorting out an appointment with him shortly. Thanks again to everyone Rach

Hi Anna, Thanks for that. You must have your work cut out with the three kids having this! I'm near Exeter so its worth exploring. I wrote to my GP on Wednesday and dropped the letter in as I was having an Xray at the local hospital. I'm still yet to hear from my GP. He probably saw the size of the letter and put it at the bottom of his in-tray! Thanks for your reply Rach

Hi, I am based in deepest darkest devon! So limited access to hospitals, as my neurologist works in all the local ones. Unfortunately my GP is writing off my low blood pressure at present to me taking Mestinon (pyridostigmine). In his very old drug book it says that this causes hypotension. I handed in a letter to him last week giving website addresses for the Mayo clinic etc showing that Mestinon is used to increase blood pressure. I also enclosed a chart with my blood pressure readings on it. Im hoping now he will believe me, but who knows? I haven't had any diagnostic tests as the last three years have been spent trying to get a diagnosis or exclude a diagnosis of Myasthenia Gravis. I only found out about the low blood pressure in March when I had been admitted to hospital for tests. Before that I had no idea what was causing these episodes of feeling awful and nearly passing out. I'm on a sticky wicket at the moment as they have now excluded Myasthenia Gravis as the cause of whats wrong with me. I feel if I mention Dysautonomia / POTS they will think that I am clutching at straws, because they feel its all in my head. Thanks for your reply Rach