helen.t

Thanks everyone for your replies. They have been very helpful! It explains why I had such pain during my pregnancies. I am interested in the connection between EDS and tilted womb though. Looking back I wonder if some of my other symptoms I've had to cope with, relate to EDS. I am not double jointed as such but I have muscles and ligaments which pull out very easily and have caused me extreme pain on exercise. I used to go over on my ankle a lot when I was young and could hardly walk on it but it was put down to having a weak ankle. My pelvic ligaments were so painful during pregnancy, I could barely walk, sleep or sit for the pain. I was in total agony but I have never really thought to associate this with EDS. When I saw Prof. Mathias in London about my Pots, he said to me '' I take it you have hyper mobility/ loose joints,'' I said no to this as I have always felt myself to be more stiff and arthritic like. But thinking about it now, maybe I should have told him more about my past muscular/joint problems. I know this is going on to a different thread and I might have to post again but was wondering how EDS affects people here and do you have to be double jointed to have it? Thanks again, Helen

Hi Folks, I was wondering if anyone has any information about Retroverted Womb problems ( womb tilting backwords towards the spine) and how it might affect the spine. My womb tilts back and I have suffered from a lot of severe low back pain for many years. I just wondered if this could be affecting my POTS sympoms and how much effect a tilting womb can have on the spine. Gyn. Docs that I've asked, seem to dimiss it as being a seperate issue but if there is pressure on the spine then surely that will affect circulation? I would just like to know if I am just clutching at straws or if I should persevere in investigations about this. I am desperate to know why my POTS is getting worse and if there is a simple but unexplored reason for it. I had a Gyn appoint. yesterday but the doc I saw was new and wasn't my usual consultant and seemed very offhand and dismissive of me. Does anyone else have this problem or have info about it? I hope you guys are coping ok, Helen

hi folks, I just wanted to say that I was diagnosed with coeliac disease just over 3 years ago at age 46 after having been ill with obvious symptoms of it for the majority of my life. I then developed POTS symptoms at age 24 when I was pregnant with my 2nd child and have been chronically unwell since. Everything was put down to irritable bowel, anxiety, stress, depression and finally ME after the birth of my 3rd and last child 18 years ago. I struggled all my life to keep going as best I could by being careful with what I ate, taking numerous vitamin supplements and herbal remedies as well as pacing myself as much as I could but always under risk of total collapse if I got sick or overdid anything for weeks, months and even years at a time. Anyway, after I discovered I had coeliac for sure, I thought that my troubles would soon be rectified after my body adjusted to the gluten free diet but I'm most sorry and upset to say that my health has just continued to decline!! and in fact went totally haywire afterI started the diet. My digestive system doesn't work properly, I can't eat dairy foods and lots of other food including fruit and beef. They upset my stomach terribly. I have many symptoms of Dysautonomia and was dx with POTS 2 years ago although the docs say that I have obviously had POTS and celiac all my life. I don't know if the fact that I wasn't diagnosed with the Celiac sooner, maybe my health wouldn't be so bad now but no doctor wants to take responsibility for that!! and so I have been told that celiac has nothing to do with my POTS. But do you think I believe that?? Who knows?! I agree with the person who said that if we all went on a gluten free diet then our POTS/Dysautonomia symptoms should improve if it was connected. However, this has been completely the opposite in my case as my POTS symptoms got worse. It is a very confusing illness indeed and I don't think there are going to be any clear cut reasons why our bodies are the way they are. The only thing that is plain to me is that my body just doesn't function full stop and I have tried everything within my power and knowlege to help it!!!!! I wish everyone here on the forum all the best in finding concrete ways to manage this disabling condition!! I sincerely wish I could be more positive but I'm only going on my own experience.best wishes Helen

Hi, Just want to say that I'm from Glasgow, Scotland and have been down to see Prof. Mathias twice so far and waiting for news of my 3rd visit. I go and stay for the 5 days for tests each time as I have to travel so far and I'm too sick to travel for a day appointment. The Prof. is really lovely and will do everything he can to help you. I thoroughly recommend him and his team. This forum has been of immense help to me also and has helped me to know that I'm not going insane after all! I can't take part very often because the computer makes me feel ill which is frustrating as I would like to give others more encouragement as I have a lot in common with most of you folks. I think I have every POTS symptom known to man among many others of Dysautonomia. I will be happy to give you any help to prepare for your London visit. Hope all goes well for you. LOL Helen

Hi there, Just want to encourage you to take the advice of the other replies. You have to think of your own position and the effects on your health. I have a so called friend who, even when she SEES me sick and really struggling, expects me to be there for her and pays no attention whatsoever on how I am affected by the way she treats me. All she goes on about is her own problems and doesn't care in the least if I feel as if I'm about to drop dead with a heart attack or stroke which is the way I feel most of the time when either standing or even sitting up trying to have a conversation with someone. People like that are so wrapped up in their own little world to care about anyone else. Your friend wouldn't even appreciate the struggle you had to go through to get to the wedding even if you were able to in the first place. Don't put yourself through it or feel guilty that you can't. These are the very people who wouldn't do it for you. You deserve to be treated with respect. Take care, Helen

Hi there, Ive tried to use EFA's in the recent past, not for cholesterol purposes but to see if it would help my circulation problem. I have not been successful as it actually makes the vascodilation worse for me. I'm pretty much dizzy all the time and so I've tried countless things to get some help but so far most things I try just make me worse. I can't understand why this is happening because I used to respond quite well to self help and healthy eating, pacing myself etc. but nothing I do or take these days has any real positive effect. It's as if something has changed as I also have symptoms now I never had before but I will make that a new topic in the future. Thanks again for all your input! It has made interesting reading and it looks like it's another aspect of the illness which we have to deal with. helen

Hi Everyone, Thanks so much for your replies and advice. It is great having your support!! I am not happy with having to take this medicine but I've had blood taken to find out about the muscle breakdown element but not got result back yet. my fasting cholesterol was a good bit higher than non fasting one and it is almost double what it should be. This was a surprise to my Dr as I'm not overweight. I already have a healthy diet so I would be hard pushed to make it any better. I'm not sure whether that to persevere might help me in the long run as I'm clearly not getting enough blood to my brain as I now have damage to my balance due to lack of circulation and wonder if having the high cholesterol is maybe a contributing factor. I think I'm just cracking up and my body is getting tired of the struggle!! I will definately explore the possibility of a different drug as I don't think I can hack this one for much longer!! Thanks again for all your help! Please take care, Helen

Hi Jan, Thanks for your reply. I was of the same frame of mind asyou about taking anything for it but my Dr. is insisting since it is genetic with me and I do get a lot of chest pain as well as some scary crushing feeling in my chest. I am almost 50 years old too and have been chronically unwell for more than half of my life. I don't have heart disease as such but I do have a lot of vascular problems which may be related to the high cholesterol. I don't know why but my health has been deteriorating rapidly over the last 3-5 years. Thanks for showing an interest and for your views. Helen

Hi Folks, I've not posted in a while due to bad health and computer problems. I am struggling to tolerate the drug Simvastatin since I've been put on it as my cholesterol is quite high. I have Pots and coeliac disease as well as other problems and my body doesn't cope with any change well. I am hoping that someone might have some information as to why I'm feeling so bad on this drug and any advice on how I might help minimise the side effects which are; numbness, tingling, pain and weakness in legs; general weakness and exhaustion; nausea and fluctuating heart rate, missing beats; more dizziness. I also take midodrine. Any information or advice will be gratefully received. Take care you guys. Helen

i got chills they are multiplying, and i,m losing control.

Great. this gave me a good laugh reading them all. here is another for the collection. You know when you have Dysautonomia when the medical team hear the rumbling of the wheelbarrow with your medical notes on it.

Hi Jacquie, Thanks for your reply. I'm on the start dose at 2.5mg 3xdaily. I'm finding that I have to rest when the dose is wearing off and for the first 20mins of next dose. It seems to be helping me endure the really bad pain and stress that I have when sitting up and standing but the dizziness/imbalance is as bad and worse in between doses. I can endure it ok but I can't physically do much as movement increases the dizziness also. In what ways does the Midodrine help you and do you feel the effect wearing off before your due your next dose?? I am waiting to get further tests and scans of my neck/head as the Neuro I saw recently thinks I may have an illness (which I cant remember the name of!!) but which involves blocked arteries. I dont know if anybody in the forum would know what this might be?? Anyway, Im glad that so far Ive had no major adverse reaction and I feel a little bit of benefit from the Mido Look forward to hearing from you soon. Helen

Hi Folks. Thats me been on Midodrine for a week now. I am not quite sure how much benefit Im getting from it as it seems to have increased my lightheadedness but helped a bit with the collapsing/dying feeling that I get when sitting upright or standing. My eyesight is a bit more blurry as well. I really want to persevere with the drug as it took much hassle for me to get it and I am in such misery with my symptoms, that even a little help would be most welcome. The thing is, my GP who is monitoring me on it doesn't have any experience of it and she has told me to stop taking it if I feel any tachy or chest pain. The problem is, I have all these symptoms constantly anyway, so how are you supposed to know if it is a side effect of the drug?? I hope I am making sense but I would be grateful if any of you have advice on how long I should persevere. Also, I am more dizzy also when the dose is wearing off and at the start of the next. I have been monitoring my BP and it seems ok, quite low in fact when lying down. I am putting off saying anything to the doctor as I want to give it a fair chance. Do you think this is wise?? Thankyou for your interest and I hope you guys are all coping!! lol Helen

Hi, Thankyou all for your replies! You have really given me some hope and encouragement. I have been ill for so long and just going downhill continually that any relief will be welcomed. So far meds haven't helped so I feel this is my last hope of something having real benefit to me. I hope I will have some positive news to report to all you guys next time! Lol Helen

I have been diagnosed with POTS for the last year and have just been prescribed midrodine. has anyone tried it and did you have any success in helping you recover. Can you tell me how it helped you and what kind of relief of symptoms did you experience. I will be grateful for any info. anyone can give me on this. Thanks a million!! Helen