Rachel Cox

Apparently it is not the flow issues that are addressed which make the difference... but the inadvertent stimulation of the vagus nerve. I am intensely curious! Do let me know how your craniosacral therapy goes, Bananas. Sounds interesting.

helloooooo! I am from New Zealand (there are even fewer of us here). I'd love to be in touch with Australian peeps. Does anyone know the exact name of the facebook group? I can't find it. Cheers, Rach

Hello, I have read lots of the stuff on the forum about CCVSI but I am unclear about whether anyone of you has had it done. When I looked at Dr.Arata's February presentation he seemed to focus on the improvements in autonomic function. I am desperate for improvements in autonomic function. Is my desperation clouding my reason, or is that just my brain fog?

I was diagnosed with PTSD before my original POTS diagnosis. Thing is, that many of the symptoms of PTSD could also be symptoms of POTS. I did have terrible recurring nightmares... overall though, since finding various treatments and understanding what my body is doing more, the PTSD theory seems to hold less water, for me. I do believe that our bodies and minds are inextricably linked in terms of our wellbeing. But it was interesting to me that when I had a medical diagnosis and stopped seeing a psychiatrist, the worst nightmares went away. Perhaps, when the PTSD dx was given, I had an explanation for the fear I felt, when in fact the fear was because I knew my body was not working properly? It's murky.

Corina, they were going to do my op with an epidural and sedation rather than a full GA, but the anaesthetist had a chat with me. She said that they deal with dysautonomia in other patients as a matter of course (people with parkinsons and MS etc) and that she knew how to look after me and keep me safe. I preferred the idea of not being awake, but I will know better for next time. Apparently everything was normal during surgery, they paced my pacemaker to 80 and nothing weird happened at all. It was afterward that I struggled! It is actually a blessed relief to be in a situation where I am being told to rest. If the expectations of me were like this all the time, life would sure be easier to handle. We have a temporary nanny here, doing the driving and cooking and after school activities and my husband said it was a shock to see how much energy she has and how much she can get done in a short time. He said it made him realise how sick I actually am. So that is good! He is a wonderful hubby but I think we have been running our house without adjusting to the changes in my ability to do things, until now. Looks like we will get an aupair once the nanny has gone, so that we can continue the rate of productivity the nanny has introduced! It will be nice for the kids to have someone to 'housekeep' and still have me to be their mummy. Meanwhile, I am lying down and watching the world go by outside the window. It is very peaceful here today. Thanks you guys for your loveliness.

Oh dear. Ended up back in again after the last post. This time they kept me in for three more days and by the time I was discharged I felt much more normal. Sometimes it really ***** when you feel horrendous and you have to explain through the worst. I had a couple of kind of 'fits' (not sure what to call them) where my eyes ran rivers, my trunk only sweated rivers, my saliva glands went crazy, I was tremoring, my eyes going every which way and pain like I have never, ever experienced in my abdomen. It was so bad my hubby called the ambulance and they took me in. I am so glad the worst seems to be over. I am sure my body went into protest over the anaesthetic drugs but no one at the hospital was able to comment on that. It is very very nice to be home again and feeling incrementally better each day. Thanks for your supportive comments! Instincts should always be listened to.

Mine roll and go in different directions when I am having a very bad time of things. It doesn't matter how much I blink I can't get control of the little suckers! It's one of the more frightening things.

Hiya, I have just got out of hospital after having surgery for uterine prolapse, cystocele and rectocele, plus a TVT sling for my bladder. Unfortunately post-surgery I had (and am having) all sorts of dysautonomia fun. They really didn't know what to do with some of what my body was doing post op! Anyhoooo, I am home now and impatiently waiting for all the swelling to go down so I can evaluate the success. I am one of the lucky 4% who have post surgery nerve pain from the permanent sacro-spinus stitches. It is awfully painful and I am on high dose pain relief... but it is early days. My uro-gynae felt that the surgery would provide a big improvement in my comfort level downstairs. I had to have a supra-pubic port for a bladder bag for a week and a half but I am two days free of the bag and getting closer to voiding without catheterisation each time I pee. It is a slow process but I am really looking forward to having a better time with my bladder function as time goes on. I am 38 and my prolapse happened more than two years after my son was born. It was due to urinary retention and dysmotility, not childbirth. I wish you every good outcome for your issues and I do hope you find the right solution for you. It is never nice having to deal with any 'downstairs' stuff! Let us know how you get on...

Our kids are amazing aren't they? My wee boy came home from school the day I got home from hospital. He said "Mum. I love you, now go to your room" (!) I asked him why and he said "because you can't get better if you don't start resting". Love that boy.

Really keen to know more about what you do with coconut oil!

Such fab news! There is nothing like the encouragement of SOMETHING that WORKS! Super news. I am smiling!

Thank you! AS it happens, hubby thought I should go back in and wouldn't let me wait to see what my 'forum buddies' thought! (Truly, I was spasming and pressing refresh, waiting for a response! bahahaha! Just goes to show how much I value the opinions of others who 'get it'. I didn't want to overreact). So we called the ward and they said 'get back to emergency, now.' So I did. Was transferred up to the ward (boy that is a fast track way in) and they told me that my op site and bladder have two different types of infection. IV antibiotics, some dressings to take home and a discharge this morning. I am happy to be home and feeling so much better. It was pretty scary because I have lost my ability to pee and poop before (this time I had a suprapubic catheter+bag as backup) but my bowel gave out completely and the pain was so intense. The doctor thought the shaking/spasms/fasiculations were a reaction to the pain and the void a reaction to the wrong antibiotics. I certainly feel different after a night on the right ones. I can't help but thinking though that the fasciculations, which were always accompanied by other sympathetic nerve over-actions must be due to the anaesthetic drugs. I kept asking if I should keep taking my pyridostygmine because I thought there was an interaction but they just didn't know. They kept saying 'well, we knew you were different when you came in, it's probably just more autonomic dysfunction. Perhaps, but it is the OTHER way to how I usually experience it. I just thought it must somehow be connected. You guys know how it is though, I shall have to wait to talk to the specialist about it some weeks from now. :-) Thanks for your lovely responses! Rach

PS. they have me on other drugs, so including my usual mestinon an domperdone i am taking gabapentin and oxynorm, augmentin and i can't rmember teh others.

Helllo. I just had gynae surgery under general anaesthetic. I was discharged today after four days in hsoptal. I have been really struggling to control the pain but my most distressing issue is these giant fasiculations. I am twitching all over and it is rocking my whole body. I can't sleep and I can't rest, it is hurting my op site because I am moving so much. I can't stop it. typing is a nightmare. Anyone else? we are trying to decide if i need to head back to emergency. your opinions would be so welcome.

No, I know what you are trying to say, I believe that wellbeing is related to your whole self. I just have a trigger happy feminist switch and took exception to the generalisations about men and women. Ignore me! :-)

I just assumed it was pounding heart because it is a very similar sensation to when my pacemaker kicks in. Having said that, it may well be my pacemaker kicking in! Do any of you have a pacemaker?

I have! pounding heart is what I put it down to... but it is really strong and made the bed shake! Scary when that happens.

Woah. Angela... your post is just so incredibly at odds with the way I think that I feel compelled to respond. I am actually horrified. Not insulted, but quite distressed that you think this way. I am disturbed that after all the work that has gone in over the years, it is still possible for someone to genuinely think that dysautonomias might be caused by anger. It is a simplistic generalisation to suggest, as you did that: "A lot of their (women's) anger is also directed inward, where it causes suppression of emotions, depression and often diseases and emotional upset". In many of our cases we don't know what the physiological cause of our dysautonomia is. I am pretty dang sure I didn't catch it from being born a female! Just my opinion.

Lucky for me, wine is more helpful than harmful. We never really understood why until we researched my new drug to see if I could still have a glass of wine occasionally. Alcohol and mestinon are not recommended together because alcohol has the same anticholinesterase-inhibiting effect. So now, if wine is on the agenda, I miss my final dose of mestinon and voila(!) happy days. Honestly, wine is a lovely distraction for me from some of the less pleasant aspects of life. I am so glad I can still drink it. Good luck with the trials!

Hi Ash, I can SO relate! My Mum passed away before my diagnosis and so I lost the person who would have truly been there for me in a completely unconditional way. In fact, she always believed that I was sick when no-one else did. My husband has devoted parents (to him) and recently, after another hospital stay for me, we rang them. My husband told them I'd been in hospital and they replied "but how are you, son? You sound like you might be coming down with a cold?". Aiaiai. I would dearly love for them to show me some 'parental' concern and I am desperately jealous of the fussing they do over him. I guess he is just receiving the sort of love we all should get from our parents so I shouldn't begrudge him that. It is part of the grief of not having family in your own support network and boy does it sting when you see that love close range! I wish you did have that, Ash! Wish I did too. Glad you have a place to vent at the very least. This forum is so helpful for getting stuff like that out. Take care and well done on getting through that presentation, four hours is a MASSIVE achievement!

Boy, just homeschooling and two toddlers would have me fatigued! Is there anyone that can give you one full day of respite? Sometimes the only thing standing between us and some respite is our reluctance to ask for help. Sometimes people offer to help and we don't believe they really mean it. Why not call them on it? A rested Mommy might be worth the cringe-factor in asking. I'm just saying that it's okay to ask for the help you need and give yourself a whole day of rest. I hope that there is someone you can ask, or a number of people. I hope you will find the courage, to ask for the help you need. Asking for help is providing as valid and important role-model for your little ones as being stoic. big hugs... from another Mummy.

Yes, but having great help with my latest meds. Bloating happens in dysautonomia with any food or drink, and/or randomly because it is a problem with the autonomic nerves not getting the message to the stomach and intestines to digest. So the food sits there and begins to rot and produce gas, which bloats, but then the autonomic nerves can't get the message through to eliminate the gas either. The gastroenterologist listened to my stomach when I was bloating and he said it was silent in there. Nothing doing, no squeezing of the intestines, it's called dysmotility (ie. no movement). I take mestinon primarily because it stops the cholinesterase from breaking down at the nerve junction, helping the undamaged nerves to still send messages... but it is the side effect of mestinon that has the greatest benefit for me. It causes intestinal cramping which forces my insides to digest and move along the food and gas. I still bloat when I eat and/or drink but it is resolved within hours rather than a constant problem that becomes dangerous. I also take motilium for the associated nausea and this combination is by far the most helpful for me, so far. So this is what I understand to be happening. We have driven ourselves near crazy trying to see patterns and identify triggers. But we knew that it was not related to food when I started to bloat after only having water. It's like an interrupted process, only part of the digestion messages are getting through so the whole system gets unbalanced. I sure hope you guys find some help, the nausea, bloating and breathing difficulties are so terribly uncomfortable.

Hi, visual problems seem to have always been part of it for me too. I think the blurriness can be explained by the pupillary dysfunction. The other visual disturbances no one has been able to explain to me. The neuro-opthalmologist I saw said that my eyes are physically perfect and the permanent flicker (in the centre of my right eye's visual field) must be sent from the brain. My optometrist said that my right and left eyes are long and short sighted respectively, so in my case that explains the depth of field problems. It's a challenge getting a prescription though! I go for eye exams on three consecutive days and she takes the 'line of best fit' for the prescription. Just another weirdness....

I'm late to this topic, but just wanted to say that I have been on Mestinon for around three/four months and I still LOVE it! If I am late for my dose (90mg in morning, 60mg midday and 60mg evening) I notice it because I wind down like a clockwork doll (dizzy, tired, distended belly, urinary retention and constipation). Mestinon doesn't make me feel like a normal person by any stretch, but it makes my bowel and bladder function more normally, it helps with intestinal motility (reducing distention) and I have noticed less dizziness since I have been on it. I take Motilium with it because I do experience nausea, but overall the benefits for me outweigh the side effects. It is early days ...and I have been around long enough to feel cynical. Nothing seems to work forever, but while the ride is better I am staying on it! I hope it works for you like it has for me. SO happy with Mestinon, my new BFF.

hiya, thanks for your responses girls. So nice to have you on here, so encouraging and emapthetic! ...apparently ivig is only useful if the onset is acute... because I've had symptoms since I was eleven my doc doesn't think that it will work for me. We haven't discussed plasmaphoresis. Still waiting for my results from some mayo blood screening tests. I am worried that not having a clear answer will put my lovely doctor off and he will lose interest in me. Gah! I will research the other things, you clever ones! thanks for giving me avenues to look into! After feeling so down yesterday I am now feeling more positive. Onward McDuff! I'll be offline for a few weeks, so Merry Christmas everyone!