Rachel Cox

Yes, I can relate to the motion sensations. I call it elevator head. Also when I lie down at night I have a sensation like I am in open space turning in giant somersaults. Like I am a whale swimming in the ocean. Never told anyone that one, so no laughing at my 'unicorn' speech okay! it calms down if I put one foot out onto the floor, but I can't do that for long or the foot goes numb.

My doctor calls it a 'try it and see' drug, as it is different for everyone. I know it has helped my dry eyes and mouth immensely. Still early days but I like life much better with mestinon. I have a new prescription for an anti-nausea which should help. Has anyone tried domperigon? (Sounds like champagne! if only...!)

I was always fine with painkillers. I had pethidine with no problems whatsoever. But three years ago when I was in hospital for my pacemaker insertion, they administered morphine for the pain. As she was pushing it through the syringe, I felt mildly itchy- then within seconds insanely itchy (I know this sounds weird)... right on the inside of my skull. I felt like tearing my eyes out so I could get to it. Horrible horrible feeling. They hit the alarms and people came running, my mouth swole up and then.. I felt very very far away. Like i could see everyone from the bottom of a swimming pool. I could hear them but couldn't talk. They put something else into my iv line and I was fine. Felt like I had been hit by a bus, but i was fine. Now I won't go near morphine. My husband says that more than any other event in my health history, that was the one when he thought I must just pop my clogs. He was very frightened. What I don't understand is why I tolerated morphine related drugs before and then suddenly reacted. I think that is odd.

Thanks Corina, today is not so great but I am still positive. I guess there will always be variation as much as I want mestinon to be my magic bullet! Do any of you take an anti-nausea with mestinon? which have been effective for you?

Hi Corina, do you mind me asking what worked for you re. 'stomach protecting meds'?

Hiya, I have just started on Mestinon, 60mg, 3x day and early indications are SO EXCITING!! I haven't been dizzy today. I have baked. HELLO MOMMA! I even was able to read the notices my daughter brought home from school without my glasses on! I am desperately hoping that these good effects are not short term. I likey. I have noticed more frequent nausea, "tummy wumping" (which is my term for a the cramps and movement on my insides.... makes a nice change to the normal dysmotility I experience) and a sharp short headache about half an hour into the dose. It goes though. Also I am having more problems holding my bladder (usually I have urinary retention) and increased tears. Most of these effects seem to counterract problems I have, so it could be an all round winner. I figure the fatigue is just part of my 'normal'. ooooooooh! fingers crossed it is still doing for me in 5 weeks what it is doing for you Rama!

Oh my. 7! abbyw, you ARE a hero. I have two and I simply don't know how you can manage 7 kids with all your health issues. I say it would be a miracle if you were able to get "jiggy wid it" at the end of a day with 7 kids even if you weren't so terribly sick! Amazing! My hat goes off to you!

Thank you so much everyone! My lovely doctor has written me a letter of explanation should I need it for the flight crew. We will book for wheelchair assist (big discussion with hubby and he agrees). I have a kit planned with all my bits and pieces to get through the flight and I am feeling much more positive. I have also just started Mestinon (60mg 3xday) and I am feeling so much better! early days so I am cautious but very very hopeful. Today I managed to bake! (doing some internal happy dancing here!) I really appreciate all your advice and reflections. Looking forward to getting away to the cold! R

I was talking to my hubby about this thread, we often hit times when it is just as you describe. Then, something will happen and we will be back in the groove again, finding joy in the simple things together. I once read somewhere that the stats for marriages where one spouse is chronically ill are much poorer than for 'normal' marriages. It really upset me and we talked about it, airing all of our anger/frustrations/worries. I guess the fact is that it's not just us patients who are suffering from chronic illness. Our whole families are suffering too. These are not easy times and we are ALL amazing for keeping going. A long time ago I asked a really old lady what she thought was the secret to successful marriages. She said something that was so at odds with modern thinking, but I can see how it works: "Stop looking after your own emotions. Just stop. Make your entire focus looking after his. If you are compassionate and loving above all things, keeping his emotional state as your number one priority, he'll stop at nothing to look after yours. Most people find it hard though, it means you have to trust each other." I can't say I manage this all the time. I get so frustrated sometimes and the comparison and jealousy creep in... it's hard to see someone living a 'normal' life and then feeling criticised when you are trying so hard to maintain stasis. But if I take a step back and consider how much he does that isn't 'normal'. How much he worries and how little he can do to make a big difference to the trajectory of my health, I just feel like I am lucky to have him in my world. Dysautonomia has hijacked our whole family, we have to hold on to each other and keep our marriage strong. Hold tight everyone, hold on tight. Somehow all of this has got to get better.

Oh yes. Not just cold and flu but other viruses too... shingles again recently. hard to fight them off...

Thank you!!!

ah, we are all in good company... this is my experience too. It's distressing because eloquence was my thing! I was trying to talk to some people the other day (the sort of people you want to at least be coherent with) and the harder I tried the worse it was. Just couldn't get the word out. It was like it was stuck somewhere. I hate it. I worry about being able to communicate everything I need to, to the doctor. Always sounding like I am lacking in IQ when I get in there. But I am smart! well.... I was.

Thanks Ellen, I am seeing my doctor today so I will ask him for a letter re.pedialyte... that is a great idea. My husband is relunctant to ask for wheelchair assistance but I agree that it is going to be necessary at the other end. I felt so horrendous after just three hours last time. It was terrible.

I ADORED the positive effects of midodrine. i was completely devastated when it elevated my BP to dangerous levels and caused really bad urinary retention. My doctor made me go off it. I still think of it and wish I could feel that way again. It made me feel 'normal'. Was a beautiful beautiful thing, while it lasted! Glad you are having a good time of it!

Yes, only have problems shaving my legs.... and YES to itchy lumps. I get them anywhere though, arms, legs, torso, neck, back.... and my husband says that I must be the only tasty one in the house, because no one else gets bitten. What makes us itchy then?

Oh thank you! Lots of good ideas here.

Oh yes, you are all speaking my language!!!! I feel able to cope most of the time with the opinions (or lack of interest) of others in general. I feel like I have certainly become stronger. But I so wish they could all come and reside behind my eyes for a few minutes and then remember that feeling. The most difficult part for me is that my lovely husband, who has been through so much with me and who is so supportive... sometimes seems to be in the 'doubter' camp. He strenuously denies it and tells me off for 'putting words into his mouth' for something he doesn't feel. It's just that when I have to ask again for something, or remind again about something, or if my answer to the "How are you feeling?" doesn't fit with his plan for the morning/afternoon/weekend/lifetime I catch a look of such intense frustration in him. Of course he hates this. We all do. When I see that look in him, my insides fight with the injustice of it, with my jealousy that he gets to feel pissed about it and yet still go be a normal person... and with my own inability to quantify how I am feeling without editing the whole of it on the way out. I wish wish wish that he didn't have to deal with my health issues. I know I am fortunate to even have him in my life. I often apologise and he says "it's not your fault"... but I feel like I should be sorry, make amends somehow/someway. He tells me that I'm worth it, but will he always be confident about that? We never dreamed that the 'sickness and health' vow would come to be so significant for us. Do any of you guys feel this way about your husband/ wife/ partner/ significant other?

interesting... i was advised to go gluten free by my nutritionist, which I have done... but for some time I have been avoiding carbs of all kinds because they just simply make me feel horrid. I have never heard of 'paleo' before but I think I will do some more research. For the most part I eat only protein with veggies. Oh, except for the lollies that sneak in (you guys call it candy!)... I wonder if I am instinctively self-assisting! The human body/mind connection is a truly exceptional thing, don't you think?

Oh! pardon me! I can't help but laugh myself silly over this sentence. Here in NZ a 'nutbag' is another term for (shhh) scrotum. Tee hee! best laugh all day :-D

also... does anyone know why flying would exacerbate my dysautonomia? I don't understand how that works...?

Hello! We are very bravely, making a family trip to the States in December, which will necessarily include a very long flight (12 hours). I recently took a short flight locally and the effects were terrible. My tear duct stopped working on one side and streamed on the other, my abdomen distention was extreme (without food), my feet and hands became painful and swollen and I felt dizzy and spacey... not to mention desperate to lie down. I am thinking there must be some good advice out there in the forum that will help me to make this approaching flight more tolerable. We can't afford to get two 'sky lounges' which are three seats opened out together to make a bed, so we have opted for one, for the kids. If I take it then two of us will be seatless. There is no stopover between here and LA. ...nervous... Any advice?

My experience of having a pacemaker has been really positive! Feel free to message me if you want more info... I have tried to post on your blog but I don't think it worked... too tired now to post again here. :-)

Hi Kelly, What an interesting thought! That sounds like the way I used to eat! It makes sense to reduce the stress on the digestive system... I just get so confused about what I should do with food. ( I've recently been researching more about fructose intolerance as it has an impact on blood pressure). It doesn't seem to matter what I eat, i still have terrible distention and pain. My nutritionist has given me digestive enzymes to aid my tummy trouble. My main focus remains getting nutritional punch because I am eating so much less than I used to. So I drink green smoothies made from kale and coconut water. mmm-mmm (not). What supplements are working for you? What do you make your green juice from? R

Mornings are hard. I feel for my husband who has to carry the morning tasks because I am just physically unable for about two hours from waking. We have little children and he has taken the jobs on with true male efficiency (!) I have to bite my tongue about all the details I would prefer were done my way (healthier breakfasts/ kids doing their chores/ better effort on teeth and hair!) because I just can't rustle to do it my way. On the morning I have to work, we wake two hours earlier so that by the time I need to get up and dressed I am not going to be late. My lovely man brings me a cup of tea and I get vertical in stages. I make sure all my clothes are ready the night before and I sit down at intervals when I am doing my makeup. It is a torture of sorts, I am sure you can all relate! On a work day I don't eat anything so that my gastro symptoms don't flare, so I just load up with water for the three hours I am at work and fall apart when I get home! I used to be a morning person... when I was a kid I used to set my alarm for 5am so I could jump out of bed and see the sun rise! I loved that peaceful beauty of the dawn, it is a magic time of the day. I miss it very much. :-(

Yes! This happened to me at the beginning of my worst slump. For a couple of weeks I was so wired/tired and your description exactly fits my fears and experiences at the time of falling asleep. The night waking was also terrifying and although I hadn't had a nightmare I would wake feeling terrified, like I needed to RUN AWAY! fast! Thankfully it settled down. Occasionally I still get the weird night time stuff but falling asleep isn't a problem in that way anymore. I hope it improves for you quickly!