Help to sleep

[Kathy1954]

Hello. I've been a member of this site since being diagnosed a year ago but haven't contributed. It's actually the only source of knowledge I have so thank you. Feb 2018 I was driving when my eye suddenly drooped I had to hold the eyelid up just to get home. I had double vision, voice dropped to a semi warble, I couldn't lift my neck, blood pressure was 190\110 and I felt listless. Was taken to hospital and after 2 days saw a neurologist who diagnosed MG [I had to google it]. Various blood tests also showed Graves. So two autoimmune conditions - one affects a chemical in the brain and the other the thyroid. But from that moment on the most frustrating thing for me was trying to get information from the consultant who specialised in MG but all he could say was "there's no cure - take Mestinon". At the same time I had an endoscopy as feeling constant nausea [have been for a few years]. This showed I have gastritis. Taking just half of a Mestinon was like paint stripper on the stomach so I don't take it. I told the MG consultant I wouldn't be coming back as it was just a box ticking exercise. Unfortunately my once tolerant nature has become intolerant. For a year I've woken around 3am - 3.30am with my heart racing. This I'm told is the Graves. I can never get back to sleep then some time after 2-3 days I'll suddenly have a slump. My muscles ache so much I sometimes struggle to get from room to room or walk upstairs. Then another day I feel full of energy and have no muscle ache. 6 months ago I saw an Endocrinologist at St Thomas's - I have a multi-nodular thyroid with antibodies but they won't remove the thyroid because it's functioning. My thymus is not enlarged so they won't remove it [although the thought of having my chest cracked open doesn't appeal]. I can't exercise as any exertion on the leg muscles will tear them although I've recently taken up Qigong. I gave up a well paid PA job 2 years ago because I couldn't handle stress and now selling my home [another stress]. I now know I had these conditions a few years ago without knowing. Headaches when I get them are quite something and can last anything from 3-14 days. I could have one eye bulging and the other drooping. Depression last year became an issue so I went on antidepressants but kept forgetting to get the repeat prescription then after 3 months realised the depression had lifted - don't know why it came or why it suddenly left me. My memory has deteriorated over the past year [I'm 64] but tests show I'm above average in the memory tests but if anyone asked what I did the previous day I'd be hard pushed to remember. I am trying to help myself now and have had 3-4 sessions with cranial osteopathy. This was in December and the double vision has more or less rectified - at least when I'm looking straight ahead. The headaches aren't so constant. I still have the constant heart racing at night and haven't slept more than 3 hours a night for a year. I can't take beta-blockers as they relax the muscles and double vision comes back. I'm trying to heal my stomach and signed up for seminars on gut restoratives. Autoimmune conditions start with a diseased stomach [I'm told]. I'm not a vegetarian but eating more of this type of foods now. I'm also taking L-Glutamine as it helps to restore gut balance. Small measures are helping with these two conditions. My nausea isn't so bad now although I find if I have a big meal it comes back. I've given up caffeine [sadly] as can't abide the raciness it gives me. When i was first diagnosed I'd just given up smoking - I do feel if I'd carried on I would be so much worse now as cigarettes contain adrenaline not to mention the 4,000 other chemicals. I spend so much time researching these conditions and know there is a cure - it's just finding it. 5 years ago I slipped two discs in my neck and had surgery to have them removed and replaced with carbon cages. I've since read somewhere there is a link between the Vagus nerve and MG. Perhaps mine was compromised having the surgery. Anyway - thank you for your tips. I'm a sponge that soaks up your knowledge. If anyone knows how I can sleep through a night without my heart racing I'd be grateful. Thanks. k.

[blondie120]

Hey Kathy,

Was very interrsting to read your post , mestinon kills me too but i take it , even now i get the cramps in my stomach , like you i’ve so much grief with reflux nausea had that camera down the throat 2 times and the wee camera down the nose , i take usual reflux meds ppi but i dont bother as much with them now though i should because i take prednisolone 5 mg daily or i just simply couldnt get out of bed , they seem sure i have lems so do i but not the cancer type im certain ive had it from a young girl but doctors thought i was a bit mad when explaining my legs would seize up and burn , now its all over arms back neck cant hold the weight of my own head , hands feet , i cry with frustration at having a useless body i dont know me when i look in the mirror , my solace is my little yorkie an he is having chemo for lymphoma, like you i spend alot of time googling for him an for me its not good news especially for my furry beauty but we have each other and thats the main thing , i went sick on 29th oct last year still off i feel so rank an my hair keeps falling out i wonder does yours ? Weird thing is seems to fall out around the outside circumference more making putting my hair up difficult but it does grow back each time then 6 month later it falls out again so weird, i have endometriosis too but it got so bad i had everything removed that at least seems to have stopped that anyway lovely to write to you xx Michelle .

[Einna1000]

HinKathy, I was diagnosed with MG in June 2018 and was started on Mestinon and steroids. If you are on Facebook there are two forums that may be able to help ... Myaware Fighting Myasthenia Together and also Myasthenia Gravis UK.