rach73

Hi, I am so sorry that you are feeling so bad at the moment. I just wanted you to know I completely understand how you are feeling. I have been ill for nearly 4 years now with some sort of neurological problem plus autonomic issues that have left me housebound and on some occasions bed bound for days on end. I have no diagnosis of any ilness other than low b12 serum levels and low normal cortisol levels. Its not helpful to try and compare yourself with other people or for others to compare you with people that are also chronically sick. You do know how your body is coping with things and you are the best advocate of what is best for you. I also get times where I am hard on myself and call myself lazy or I am not trying hard enough. Its like this other person takes over and says "you aren't sick, if you pushed yourself you would do more." So you do more because you think the voice is right and then you end up collapsing and being even sicker. Its a vicious circle and its so easy to get sucked into it because for me no one believes (other than my family and husband) that I am sick. I look reasonably well and I can do the basics of day to day living most days, but do anymore than that and I will collapse and be bed bound for a few weeks. I think you will find that there are a lot of people on this forum that feel exactly the same way you do. Ive seen posts where people have said they have pushed themselves for family occasions and ended up sicker. You aren't alone in this. This is a great place to vent when you are feeling so overwhelmed you dont know where to turn, because a lot of the people here have been there and understand it. Plus your typing was fine! Hang on in there Rach

Hi, this is just a couple of suggestions to help cope with the migraines. When I was 13 through to about 16 I suffered with migraines several days a week. It was quite a few years ago and no medicine actually helped me. Usually becuase I used to vomit so severely with a migraine nothing stayed down. Preventative medication didn't help much either. However for some reason I got a small amount of relief by taking a baby asprin a day. It could have been coincidental but the migraines started to space themselves out. I could never find a trigger for mine but they started when my Gran was terminally ill with cancer. I have found that a hot water bottle applied to the back of the neck helps my migraines a lot. My old family Dr said it was because it helped the blood flow to the brain as during a migraine attack these vessels become constricted. How true that is I dont know as we are talking over 20 years ago. I know several people that have had good results with the herb feverfew. Ive never tried it but it maybe something you might consider. Are they using botox in your neck of the woods for migraines? Its a treatment they have just started here in the UK . I really feel for your daughter as its so incapacitating. I really hope you manage to find something to bring her some relief. Rach

Hi, I too suffer with the evil addiction to nicotine. I have no problem stopping smoking I just cant stay stopped. I have had to reduce my intake, at one point a few years ago it was nothing for me to get through 2 packs a day! I was working so I dont know how I managed to fit them all in. I dont have any problems with it making my heart race and if I am feeling really bad I dont smoke - the reason being is we (hubby smokes too) only smoke in the back garden. If I am bad I will be in bed and no matter how much I may want one I wont risk the journey downstairs. The cigarette or fag as we call them here in the UK - which has a totally different meaning for you guys in the states- that causes me the most problems is my first one of the morning. I have to be really careful as my BP drops dramatically during the night. I have had occasions where I have been very close to passing out when smoking that first one. Now I try and move around a bit and get a cup of tea before sparking up. If I feel the stars and black dots coming on, I put it out and get on the floor. I'd rather arrive on the floor under my own steam than through blacking out. Ive also had to reduce the amount I smoke due to the terrible nausea I suffer with due to the fact I possibly have gastroparesis. Other than that I dont have any problems with the smoking other than I would like to quit and actually stay that way. Rach

Hi, thanks for the replies. I have taken my body temp when I have woken up from these sweats and its 36.3 - I have a low body temperature normally. Ive had a tonne of blood tests checking hormones, inflamation, white cell's etc and nothing has ever shown. Had the ANA test all negative. My sister suffers with the same thing and her endocronologist believed it was autonomic dysfunction caused by REM sleep. But whether he was just clutching at straws for an answer I dont know. The stupid thing is Im always so cold during the day! I seem to go through phases where I may have a six week period of no sweats and then they are back with a vengence. So I think after a month I may stop the Ibuprofen and see what happens. But your right its weird that an anti inflammatory stops the sweats. I have to be careful with my stomach as I have a hiatus hernia, reflux and possibly gastroparesis, so I am very cautious using ibuprofen and make sure I have something on my stomach before taking it. Has anyone tried paracetamol for the sweats and does it have the same effect? That would be better for my sensitive tum! Thanks again Rach

Hi, I have been a member of the forum for a few months now and I have found it to be interesting and compassionate. I just wanted to say a big thank you as due to this forum and the advice offered on it I think (fingers crossed) I may have found a "cure" for my night sweats. I have been suffering with these night sweats for about 4 years. I have had several blood tests to check hormone levels etc but at 37 years old no one could provide me with a reason to why they were happening or how to stop them. After going through two weeks of the worst sweats ever, waking up with sheets and duvet cover so wet you could wring them out and constant waking from the sweats, I decided to search on the forum for answers. I can't remember the thread or whose suggestion it was but some said about taking Ibuprofen before going to sleep. I will admit I was a little sceptical at first, but I gave it a try. I've been doing this for five nights and last night I had no sweats at all for the first time in years! Initially the sweats were still there but much less than normal and slowly over the last few nights they have completely disappeared. For the first time in years I didn't drink 2 lts of water overnight due to being dehydrated because of my night sweats. I am amazed and so thankful to whoever it was that suggested this and I would also like to thank every single forum member that posts and shares their personal experiences in the hope to help others or just provide comfort. So from one very satisfied customer ! LOL Thank you very much. Rach

Hi, Im from the UK and I am in the Southwest. I am without diagnosis and struggling as I now seemed to have developed gastroparesis as well now. My main battle is that my GP doesn't believe Pots exists and that he believes your heart rate going from 80bpm resting to 135bpm on standing is completely normal. I bought the book the fainting phenomena and lent it to him, so I await his response. I am currently waiting for tests on the gastro symptoms. I find this forum so helpful its my lifeline and the only way that I know I am not going mad. Rach

Hi just thought I would add Im a hiccupper too. I dont know if that's the word either but I liked it. Yes I get dizzy too with sneezing and over the last three days thats all I have seemed to do! Rach

Hi, haven't been around for a while so I have just seen this post. Ive been having night sweats for around 4/5 years Im 36. Hormone levels checked out fine. I dont really sweat during the day but at night I can drench the sheets. It only happens if I am asleep - even if its just a nap in the afternoon. I wake up and my nightshirt will be sticking to me, hair will be soaked, bed clothes damp. Ive checked my temperature and no fever, its around 36.3. I do know though night sweats mean Im going to have a bad day following them with lower BP etc. My sister saw an endo recently as she has the same problems and he said its an autonomic issue and something to do with REM sleep. I have the sweats at night and cold during the day! Its all good fun. Rach

Hi I suffer with ptosis and facial weakness. Can you explain the comments regarding this as I am very interested. Rach

Hi, I have noticed over the last few weeks I have been getting dead arms and legs, that last for a while. I dont know how long as it is happening in my sleep. Ive checked the position that I wake up in, its usually on my back with my hands on my chest or by my sides, so no explanantion as to why they are dead. When I go to move them its pretty much impossible. I have tried to flick a table lamp on when my hand/arm has been dead and I can't do it. Unfortunately I have been so out of it (groggy) when its happened I couldn't tell you if they have changed colour. During the day I find my legs go to sleep much easier than before. I was going to post a topic on this so I am glad you have. My arms go weak during the day also but not to your sons extent. The other night I awoke with both arms dead and my right leg. My left leg was totally unaffected, I could move that around no problem. But to move my arms I had to swing them from the shoulder. Very bizarre. Im just glad to see Im not alone on this one. Rach

Hi, can't write it as it wouldn't get past the moderators LOL! pretty bad today. Rach

Hi Dana and Anna, unfortunately the UK cut off point is 180 before you are classed as B12 deficient. I see in Japan - it was either on here or when I was researching pernicious anaemia that they class anything below 500 as deficient. If I dont get the injections I may try and find a suplement and see if that helps. Its a bit like the joke of our thyroid levels here in the UK, lower than the rest of the world and so many people suffering due to it. But thats another story. I had the gaviscon liquid due to the reflux burning my throat, so I wanted something to coat it. Its not working as more is coming up than staying down. Sorry to be graphic! I may now try the tablets for a bit. Emailed my GP to tell him of the issue with gaviscon, so may now just go up a medication. I didn't realise that these proton pump inhibiters can mess around with your BP, that would also explain why I am going through a particularly bad patch at the moment as Im taking the stuff more regularly. I just dont know what to do for the best. I can't cope with feeling like an extra from night of the living dead due to BP crashing on the other hand I can't cope with the constant sour taste in my mouth, belching like a trucker (I love that phrase so I hope its ok that I borrowed it!), stomach pain and vomiting acid in my sleep. What are you supposed to do!!!! Thanks Rach

Hi Anna, Thanks. Im only just on the scale for b12 deficiency, Im 178 the cut off is 180, however I have numbnes and tingling in my feet and hands. Because of this I am getting tested for intrinsic factor. Im hoping that they will at least try me on the B12 injections so I can see if this improves my hands and feet. Spoke to my GP yesterday, I have to add gaviscon into the mix along with the lansoprazole. The trouble is gaviscon liquid makes me want to vomit!! So the trick is keeping it down. If this bout doesn't subside in a week he will be trying me on the next level up of medication and refering me for an endoscopy. I have a very small hiatus hernia so I wonder if this is playing a part. I know that I also suffer with what the Drs have called a spastic colon. So I really thing this is a mixture of gastric issues related to dysautonomia. I'd love to have a gastric emptying study done to find out what is going on. Rach

Hi, Im suffering with suspected gastritis at the moment and all I can say is it flippin hurts. I have been taking lanzoprazole for years and have been taking it religiously for the last two weeks (before only took it when symptomatic) and I'm worse than ever today. Unfortunately blood tests have revealed that I am now B12 deficient and it could be down to long term use of lansoprazole. So that is something to be aware of when taking this kind of medication. I can't tolerate apples otherwise I would try your suggestion Anna, as Im desperate for any relief today. I have constant burning, sharp pain, nausea. Its no fun at all. Rach

Hi, I quite often have a blue / purple lip line appear although my oxygen saturation will be normal. It only disappears when I use oxygen from my concentrator. No one can explain to me (in the medical field) why this happens. Rach

Hi, I have no diagnosis of either pots or EDs. Although EDS is looking very possible, I scored 5/9 on beighton scale and I didn't bother looking at my knees or elbows as they are just to tempremental! So really it was 5/5 for exercises tried. Ive always had problems with my neck, when I was 16 I had to see a chiropractor and he said I had a neck like a swan, very long and straight with no natural curve. Ive managed in the past to sprain my neck and have whiplash. My issues now are that it crunches all the time and that I have problems supporting my head. My neck seems so weak it just cant support it. (must be my big head lol!) I also find I get very dizzy just turning my head. Good post. Rach

Hi Nina, Im new here but I have been going through all the old posts and seen the compassion you have shown to others throughout those. Im so sorry that you are having to deal with all of this right now. I just wanted you to know that I am thinking of you, sending cyber hugs and positive thoughts your way. Rach

Hi, I have been on mestinon for nearly three years now. I was originally diagnosed with myasthenia gravis and the diagnosis was removed, hence why I take mestinon. I take between 60-90mg four times a day. If I don't take it I have really bad ptosis. My BP really drops at night when Im not on it. It was only when I had to come off mestinon in March this year for hospital tests that I actually uncovered my low blood pressure! I can certainly notice a difference when I am not on it. Basically feel like I am going to black out all the time. It hasn't got rid of the low blood pressure completely but it does help. It can have pretty horrible side effects, which I still suffer with pretty much most days. I always have the immodium handy! Im still freezing cold all the time, so I really wish it had the same effect as you Corina! Rach

Just thought I would add this episode aired in the UK on Sunday 9th May - it will be repeated sometime this week on SKY.

Thank you so much for that. Rach

Hi, she was diagnosed with ME over twenty years ago, when she was 14. She became ill after a bad bout of flu. However she was always getting strange illnesses as a child that nobody could figure out why she was getting them. She has had MRI scans of her brain which revealed no brain stem leisons which show on a lot of ME patients. She has never had any formal ME testing. This diagnosis was reached after testing revealed nothing other than a few antibodies for toxicara and coxsakie virus. (sorry if I have spelt those wrong). After that she recieved no follow up. Despite the fact she was having seizures, and became doubly incontinent. My concern has always been is it ME or actually something else? Its only now that she is getting further investigations as her condition has become much worse. She has no diagnosis of POTS or NMH. She is now back under a neurologist, endocrinologist and a few others. She has been also referred to an ME specialist. Its now only after spending time on this forum and doing a bit of research that I have realised that she is suffering with some sort of autonomic dysfunction. From birth she has had issues with thermoregulation. This is something I have developed in the last few years. Everyone is in t-shirts today, I have a thermal vest on, a t-shirt, a sweatshirt, gloves and hat on. My finger nails are blue because I am so cold. We both have low body temperatures ranging from 35.5-36.3 max. Both suffer from night sweats, nausea, vomiting, gi problems. Both have problems with fast and slow heart rates. Memory loss, numbness and pins and needles in various parts of our bodies. Both of us actually only feel ok when laying flat. Both have fatigue and weakness. I am the only one with a droopy face and eye. Both of us need wheel chairs to get around and we both suffer with joint/ bone pain. The longer we are both ill the more our symptoms seem to be the same. As we are in different parts of the country we are seen by different people. She has inflammation markers in her blood, as do I. Though both of us are negative on ANA, tests. Clearly something is going on. Thats why I was so very interested when I saw the article you posted. Sorry I seem to have hijacked your thread. Im really sorry about that. Its just it really is very interesting to me. Rach

Hi, Massive thank you for that. My sister has has ME for most of her life and is chronically ill with it. The thing is now many of our symptoms are shared- autonomic ones, its really bizarre. My sister always has positive markers for high inflammtion, so its extremely interesting for me to read this. She is currently doing the rounds with many Drs at the moment due to her symptoms becoming so much worse. She has fast and slow heart rates and she told me today that when she stands up she sees stars. So it has become very interesting indeed lately. We hope if one of us gets diagnosed with something it may help the other! Sorry to ask but can you try and give me a more basic break down of the low flow pots. I have read loads of stuff on here, but due to me A) being thick or not fully functioning on all fronts I have had a little difficulty understanding this. So thank you again Rach

Hi, this is very interesting as my CRP levels are always elevated. Last year they were recorded at 33, the highest level I have had. Due to this they did an ANA test but it was negative. No cause was found for the elevation. Im having this repeated next week and will be interested to see what the levels are this time. Rach

Hi Reen, thanks for your reply and thank you so much for the link. It was extremely interesting, especially looking at the family history aspect of things. Migraines run in our family - nothing unusual in that. Deafness is on both sides of the family, so that was interesting as well. Your not the first person to mention this condition a friend from another forum has mentioned it also. Its just very difficult to bring up with my GP at the moment due to the fact that the consultants have dropped me from the hospital. But it is something I will mention to him at some point. Thanks again for your help Hugs Rach

Hi Julie and Reen, thank you both for these links, both were very interesting. Unfortunately or fortunately my eye isn't swollen when I have ptosis, its totally normal it just goes an odd colour like I have the start of a black eye. Its more like the article in the new york times, where I look like I have had a stroke. Right eyebroe drops by about 2cm, right eye closes and the right side of my mouth droops also. My BP can be lower than normal during these incidents. Normal for me 110/70-120/80. When this happens it can be under 90/60 down to about 72/40. My heart rate can be 85-130. There seems to be no rhyme or reason to when these episodes occur other than my bp tends to be low. Thank you so much for your help and taking the time to reply to my posts. Hugs Rach