Rachel Cox

I had a long QT too... and that led to me being seen by a cardiologist. Interesting! I hadn't heard of anyone else with that presentation before...

I had to do valsalva for a urodynamics test and it made me very very dizzy. Similarly, but much worse when I was delivering my babies. Love it how everything starts to make sense when people start posting.

I've recently dropped gluten and was surprised at how simple it was. Sometimes I just eliminate the carb from the family meal for me and that has been easy. Not seeing any difference yet but I am hopeful!

Make sure someone can drive you home! Take change of clothes too.... I underestimated the TTT and ended up flat-lining (don't panic, this is apparently rare) but my point is that you are going to feel like poop... you will probably pass out (standing strapped to the table is much worse than normal standing because you can't shift your weight). Don't worry about it, your body will do what it does when you have been backed into a corner (or strapped to the table!) Just try to relax and don't fight it. Let us know how you got on. May the force be with you!!! R

Short cycle, high dose. Thanks for responding LMG and Lumpchp.

I've always had this problem too, but I don't know if I have mast cell problems(?)... I have always put it down to my body's difficulty in regulating temperature. If I am in the shower and I shave my legs it has to be at the end of the shower, like Katie. I think this is so that my skin has time to calm down from being goosey. I also make sure there is zero draft in the bathroom because even an extractor fan generates draft which makes my legs go goosebumpy. When my skin is goosey I can shave the top off every follicle and only realise after the fact. I guess this is why lotions and potions aren't happy either. I find leg-shaving and other shower tasks so difficult in general and showers are exhausting. Wouldn't it be fairer if one of our symptoms was an absence of HAIR!!!! I would like the universe to be kinder on this front! In leg-burny empathy....

Sorry everyone... I seem to have postd this twice and I have no idea how to delete it!

Hi, has anyone here taken prednisone for their symptoms before? I have had fludrocortisone before but not tolerated it well. I am a little anxious about side-effects, but willing to try anything the doctor suggests. Any comments?

Hi, has anyone here taken prednisone for their symptoms before? I have had fludrocortisone before but not tolerated it well. I am a little anxious about side-effects, but willing to try anything the doctor suggests. Any comments?

Hi, I have been trying to find out about it too, after a neurologist told me I have it. He said it was progressive and there was nothing they could do to fix it, just management of my symptoms. I would love love love it if someone could point me in the direction of information which says it is self-limiting or can resolve itself!!! Subsequently my doc has told me that IVIG therapy is only helpful for people who have a sudden onset. I have been having symptoms (which I was told in my original diagnosis were POTS)... since I was 11, so he said it won't help me. Sad about that. Just recently he has suggested maybe going on corticosteroids? Anyone else tried that?

Hey, Leydengs, thanks for your response. I am going to see my nutritionist next week. She has given me digestive enzymes to take with my food too. I am hopeful that she will be able to offer more help. Last time I saw her she said she needed time to do some more research, so that is a positive step! She follows the Dr.Libby method. http://www.drlibby.com/ which is all about balancing the hormones to support health naturally. I am hopeful! I wish you all the best for your quest to find a good nutritionist too. I just reached a point where I thought, 'may as well see how I can help myself through what I put into my body'.... it's about all I can do! Nice to have positive action though.

Hiya! I have been seeing a nutritionist who seems to know more than most people I have seen about the ANS and all that stuff. She said my cortisol is frighteningly low so I am waiting for my next appointment with her to see what that means(?) and what is next from her. She's got me GF and DF and I am hoping to see some results. So far I have been GF and DF for six weeks but I am still suffering terribly in my tummy. How long should it take before I see a positive change, if there is going to be one? Please never apologise for the 'book'... I LOVE BOOKS! Every word you guys write is helpful and gives me more hope, I appreciate them all!

So nice to hear that. Also nice to hear that you have a treatment plan that sounds logical! Thanks for explaining it to me in normal words. ;-) I am trying to keep working. It's only part time but it means a lot to me to maintain a presence, and I love the work. On a work day, I have to not eat anything from when I get up until I get home because the post-prandial bloating is so very difficult to deal with if I have to move around. I just drink lots of water and hope for the best. It is exhausting though and I am often tempted to give up.

Nice to meet you! How did it all happen for you?

Oh YES! Thank you, new hero! That is very helpful I so appreciate you taking the time to respond. I have always felt there must be a reason for all these things to be going wonky. There must be a CAUSE. It's nice to see that the medical community is looking into it. I had one doctor say to me "see now, if you had something more common, like MS or Parkinsons, more people would be interested in helping, more research would be getting done because more pharmaceutical companies would see big profits in finding a treatment. I think you shouldn't get your hopes up" ...thing is, if I don't get my hopes up it all seems rather bleak. That's not a nice way to live when there are already lots of things keeping you down. Thanks for sharing about you! As they say down here in our little bit of the world: Kia Kaha (stand strong)

Oh, thank you for responding! Yes, I think my general physician thinks that the above is the most likely scenario. I've had some tests (AVA and ANKA...? but I am working off a fuzzy memory for the names of those tests). Both were fine but he thinks there is more to explore. Nice to find someone else with some hardware! It always wondered why more POTS people don't have them?

Hello dear Dinet people, I am deeply impressed with your collective intelligence! When I was first diagnosed with POTS three years ago, I made a little tentative toe-dip into the world of dinet. I didn't stay long back then. I was more than a little overwhelmed by the easy way everyone seemed to toss tricky medical terminology around. You all know so much about so many complex things! I didn't want to have POTS and I figured I mustn't ...simply because I couldn't understand it, so I thought if I ignored it and left the forum it might go away. Ha. I am back. Things have progressed with my delightful body but this delightful brain is still not progressing into an easy understand of all things dysautonomia. Since I was last here there seems to be more chat about auto immune stuff and something called mast cells. Some people are into vitamin D and lots of you have Sjrogen's. These things are all new concepts to me. And I still don't understand how it works together. I have learned a couple of new (and useful) terms for the joys my tummy brings me every time I eat. Gastroparesis and intestinal dysmotility. And the lovely urinary retention. So I have my head around these things... but OH MY! You all know so MUCH about different tests and what they mean, all the jargon. Blows my little foggy brain off into the wild blue yonder! Please can you help me, medico-moguls of the potsy/dysautomic planet we call home? I need a kind of a 'cheat sheet' explanation of the new things above. Preferably in normal English. And I want to know if there is anyone like me? Pretty please? I am in New Zealand. It's beautiful here(!) but very isolated from any expertise in autonomic problems. I had asystole on the TTT and they put in a rate-drop pacemaker to stop my heart from stopping and prevent me from fainting. No one else here seems to have this...? Apart from the dizzy/ foggy/ headachey/ exhausted stuff, I have autonomic dysfunction of the stomach, bowel and bladder (not pretty stuff and I won't give you the ugly details!). I have problems with my eyes (focal spasm and a permanent flickery disturbance in the vision on the right). My throat hurts every night and feels dry as a bone, even though I am drinking water like a fish. After a recent stay in hospital for the tummy stupidities, I saw a neurologist who said I don't have POTS but 'pandysautonomia'. I have a lovely general physician who is trying to find some things out for me... So although I would like to run away again, I think you guys might be just the sort of people who can help me to understand what is going on with me! Are any of you like this? Can any of you volunteer to be a guide? From the impatient patient, Rachel

Hmmm.... I am a bit brain foggy tonight but this might be useful (?).... My nutritionist suggested that these night terror/sweating episodes might be explained by the idea that the liver is de-fragging (sorry, my term, not hers) around that time of the early hours of the morning. She said it happens at while we sleep because the process is so exhausting we wouldn't cope with it if we were awake. Something about toxins (or was it hormones?) being released into the blood stream at that time. I have also heard that if you have excess oestrogen that can cause night sweats. But best to google it if these ideas ring bells for you. Just thought I would share in case it is useful.

Yes. It's true, it takes away so many of the best bits of life. I feel like my career has stalled when it should be flying. I want to experience life fully, not through a fatigue of fog and dizzy craziness. I want to have some energy for my kids and my husband. To get things done around here and to be able to start a job and finish it all in one go. About a year before I was diagnosed my cousin's husband had an accident on the rugby field, it broke his neck and now he is a quadriplegic. I have some very crap days and when I do, I try to think of him and how lucky I am to be able to hug my children still. To feel the warmth of my husband in bed beside me and be able to feed myself, toilet myself and dress myself. Even if it is slow, painful or totally frustrating. I have lost much, but not as much as could be lost. I don't think we have to be grateful for losing what we have lost, that kind of 'graciousness' is beyond me! But I am grateful for all the things I have still. I hope that you find some things to bring sunshine back into your world.

Hi, yes I do! I am in my thirties and I have this problem. I had a urodynamics test done (they catheterise the front and the rectum and then as they fill your bladder, the machine you are hooked up to measures the pressures etc... then you void on a flowmeter pan and they measure again; testing pressures when you cough and strain as well as normal). The urologist said that my detrusor muscle doesn't work properly which is consistent with autonomic dysfunction. I often have to strain for a long time to go, sometimes I can open my urethra to pee but not always. Recently I have been taught how to self-catheterise and it is a huge relief. I am able to empty any residual before bed and again in the morning. This means less UTIs and so it is worth the effort (and initial emotional distress). At first I didn't want to accept it, but ultimately it is one of the things that I actually CAN DO to improve things. I can do it for myself and that is more than for many of the other issues. It's a fix, you just gotta look at it in that light. Self intermittent catheterisation is an easy and inexpensive thing to do. Is there a local nursing service that could teach you how to do it if you doc thinks you should? Sorry, I don't know much about how your medical system works. I am on the other side of the world! All the best with your bladder, I know how very distressing it can be to struggle with these symptoms every day. Thinking of you. R

Thanks Sue, I will look into those and see if that info can help. So good to have this forum!

oooh yes, I can relate to the constant nausea in pregnancy. i have managed to have two babies :-) both born early due to increasing difficulties during the last trimester. But both of my babies are healthy and happy children now. I am so thankful to have them in my life, they give me a reason to push myself when I feel like stopping... ultimately that is the most helpful thing in the world. My mummy-motivation keeps me going. All the best with the conception/pregnancy/early years. Never give up. Motherhood is the most valuable experience I have ever had.

HI, I am 37. I have just been diagnosed with pandysautonomia after being told for the last three years it was POTS. I am unclear about the distinctions between both and finding any research I do really confusing. The doctor tells me I don't have evidence of autoimmune problems, so I don't think I can try IVIG. I have vision problems, dry mouth, othostatic intolerance (and a rate-drop pacemaker after asystole on the TTT) a barely functioning detrusor muscle, neurogenic bladder and recently more episodes of gastro involvement (pseudo obstructions and painful distension) and numb/ tingly hands and feet. He said it is progressive but i can't find any information about what that really means for me... he also said he has nothing to offer in terms of treatment. What will happen to me next? Will I become entirely incontinent? What about breathing? I have so many questions! Do any of you have any ideas for me? I feel like I have been set adrift in a sea in a foreign land. What is the prognosis for this? All I could find on the net was prognosis information for auto-immune pandysautonomia... I don't know where to look next. Hopeful Rachel

Every day, a little better. Got started on midodrine at the hospital on Friday and hooray, the doc says I can come off fludrocortisone. I am SO happy. The midodrine seems to be helping too. though my BPs have been quite high. I am borrowing sunshine from the 'happy house sale news' and spreading it all over everything else! i hope you are all getting some sunshine too. thanks for your replies!