DESPERATE DEB

Hi, And there was I thinking that once I eventually am diagnosed, this nightmare might be over! This is really scary. I have seen so many posts on here and on other forums where even diagnosed sufferers are not getting enough support or the meds are not helping. I have no answer to your problem as I haven't even got to the diagnosis stage yet. All I can say is I hope they get this sorted for you, even if it means changing docs (again) or seeing what other people are taking and what works for them. I find it so unbelievable that so many people are suffering because there just isn't enough knowledge on this still. If you put in a Google search for it, pages and pages of sites come up so it's not like a super new thing so why haven't they sorted out the meds like with other conditions? I don't know how long it took for you to get where you are now but I would guess it was a miserable frustrating journey like most. Then to find that nobody is competent/knowledgeable enough to treat you! Good luck. I really hope they can get you on the right meds, and soon! You've put me off my breakfast now Debx

I'm so sorry to hear that. Please give her my best wishes. Will be thinking of her so please keep us updated. Debx

Thanks for your post. It really is helpful. It must have been terrible for your son and all of your family waiting for some help with this. Because of the experience I have had so far with GP's, they have got quite frustrated with me and actually asked me "what tests do you want now?" ha ha. Of course before seeing this site I had no idea what the answer to that was. Now I have some ideas but because they will not understand this even though I will turn up with my print offs about it, I know for a fact they will not know where to send me. Do I say a cardiologist or a neurologist? and does it have to be a specific one? I know that I will eventually want to see a specialist in this but would I have to see a cardio or neuro person to have some "evidence" of a protential problem before I can get a referral? I really have been through a bad time with this horrible thing, and its definitely been made worse from the sheer frustration and stress I have had from being treated so badly for not being a "straight forward" case for them. If it turns out that I am right about this and do eventually get diagnosed, I will definitely report them for their treatment of me. Look forward to hearing from you. Take care. Debx

Thanks Jana and everyone else who has given me such good advice on this post. Deb x

Hi Lieze, I was really sad to read what you're going through, as if your health is not bad enough on its own. It puts my own problems into perspective somewhat. It's terrible that you're having to deal with so much at the same time. I can only pray that these problems subside and you can start to feel better. For me certainly, I find that stress seems to trigger bad espisodes so it is definitely something you don't need, and you appear to be getting that from every direction. I cannot believe how the people at work are treating you. I would definitely get that out in the open before too long. Pull them to one side and ask what their problem is. In work environments, its normally jealousy or something else quite ridiculous. Like being back at school. Shame on them and then not having the courage to let you know why. Take care. Debx

I love that quote too. My parents are never horrid to me. They just don't understand. Like I have said before, my mum is ill herself and just at the time I want to be there for her, I feel like this and I am left feeling guilty for thinking of myself. She is terminally ill but actually well at the moment but I just want to get better so that I can support her like I should. I was trying to say in my post that I feel like she was saying I was looking on here to find something wrong with me and not find OUT what was wrong with me! I don't think she really means it but doesn't know what to say anymore, like everyone else. Thank God for this site and the kind people on here. Take care. Debx

Thanks Stacey. Like I have said, this is a great site with lots of info and help from other members. I think the best thing for me is not to speak to people who don't understand. It doesn't help me or them. I'll just stick to my friends on here

How strange, because I was watching a programme the other day, I think it was on The One Show, and it was so interesting. This lady had synesthesia and actually did paintings from listening to sounds. They were the most beautiful paintings. She was saying that the sound of her new baby crying produced yellow lines. It was really interesting. I still don't know if I have POTS as I am still waiting to be referred but just thought I'd mention what I'd seen. I had never heard of it before that. I hadn't realised that it could cause so many problems also. Take care. Deb

Hi everyone, Probably on my own with this one, but I normally leave this one out because it sounds so weird. I always feel like I have a fuzzy head but sometimes I feel like my head is actually shivering! and it can either stay just there or go through my whole body and I feel like I keep shuddering from head to feet. I know it is quite understandable shivering through your body but has anyone ever had that feeling in your head? This is one of those things that I could never even try to explain to my doctor Thanks in advance.

Hi Kansas girl. Yes. I get this a lot and it can be for a couple of hours where I literally cannot move where my legs ache so much, as if I'm coming down with flu, then miraculously it will disappear. Other times it can be for a whole day at a time. No fever, like you have with flu, just that horrible ache. I have not been diagnosed as yet but this is one of my main symptoms. Hope you feeling better today. Take care. Deb x

Hi Stacey, Thank you for your kind reply. I saw from another post of yours about a newspaper article that the BP monitoring isn't always reliable as you can have a high HR and yet BP doesn't change. I was going to borrow my mum's monitor this weekend and will still give it a go but if it doesn't show a rise I will still ask the new doctor to refer me for a tilt table test. Thanks again. Take care. Deb

Hi Stacey, Thank you for your kind reply. I saw from another post of yours about a newspaper article that the BP monitoring isn't always reliable as you can have a high HR and yet BP doesn't change. I was going to borrow my mum's monitor this weekend and will still give it a go but if it doesn't show a rise I will still ask the new doctor to refer me for a tilt table test. Thanks again. Take care. Deb

Thank you so much for posting the link. I wish there were more doctors around like Dr Abdullah. The words in that that article are so true of how I have felt myself: isolated and depressed.

Have you ever felt like this site is like a naughty secret? When I found this site last week, after so long without any answers or help from my doctor, it was like I wasn't alone any more and most importantly, confirmation that I hadn't gone mad. Reading other people's stories was great for me and some kind replies to my posts really helps me a lot. However, yesterday, in a well meaning chat with my mum, she said that I mustn't keep thinking that I have dysautonomia and shouldn't really read into it. I may be being paranoid but it was as though I had found a catalogue of things I couldn't really afford and kept looking at things that I shouldn't! As if I was trying to find things wrong! I am looking because I am trying to find some answers to the **** I have been going through! I found it rather hurtful and felt so angry. If you've seen my other post I have been treated quite badly by my GP because he doesn't know what is wrong with me. Maybe I'm just feeling low at the moment but I felt like I was having another conversation with my GP. Has anybody ever experienced this? People just not understanding why you want to look into what is wrong with you. My mum isn't well herself and the last thing I want is to be angry with her. She just doesn't understand and why should she? Now I feel like I don't want to talk about what is wrong with me in case I'm accused of reading too much into things! This is a great site and I'm sure it is a big help for lots of people. Loads of information and like getting a new friend!

Thank you, and all the others who have replied to my post. There is a lot of useful information here. I am going to borrow my mum's BP monitor at the weekend and see what happens. I feel a lot less lonely now I have found this site. Although I am surrounded by people, I always feel so totally alone with this as nobody I know has ever gone through this. Thanks everyone

I completely understand what you said there. The day before yesterday all I did was go shopping and go to parents evening at the school and I felt like I had run a marathon. I could hardly move when I got home and had to push myself to get dinner and do the ironing when I just wanted to curl up and lay there motionless and not even speak. I'm 45, NOT 85! My poor mum is terminally ill and while I'm trying to be there for her I seem to keep moaning about myself which makes me feel so guilty. I just want to feel better so that I can be there for her. Yesterday though in a conversation with my mum she wants to say the right thing but put my back up by trying to say that everything would be ok. How terrible am I that I get angry when people try to comfort me? Then I feel guilty for being angry!

Hi Laura, Thanks so much for your reply. I apologise for all that you had to read I think I just blurted it all out to get it off my chest. I forgot to mention that because of the way he spoke to me last time I have managed to get an appointment with a new doctor at the practice who I have heard is great and understanding. My problem is that because I have had so many different symptoms and such a wide range I don't want to confuse her from the start. I want to go in and get my point over without going into floods of tears and blurt everything out. I'm hoping she'll know something about it and might know the first place to start. With the other doctor, I can understand how frustrating it was for him too as every time I went it was something else, headache that won't go, fainting, fuzzy feeling, chest pain, shivering, nausea, shaking and aching. I think everyone at home is probably fed up with the sight of me too always something wrong with me understandably they don't know what is going on either and they are even starting to roll their eyes when I complain about things. I can't expect them to understand. I seem to have lost touch with my friends because of all this too. I feel like I don't want to speak to them at the moment because I am not very good company. Obviously you are here because you are suffering too and I appreciate your help. Hope you are not too unwell. I note you're in the UK too, which is nice. If you ever want to chat or let off steam, please send me a message.

Hello everyone, I am new here and have not yet been diagnosed. I haven't been well since last August and because some of my symptoms don't appear to be the same as others, I am not really sure whether it is dysautonomia or not but could really do with some advice. I will try to be as brief as I can: I used to have panic attacks (or what I was told were panic attacks) which strangely only used to occur just before my period. I have had bouts of weakness since I gave birth to my first child in 1995. As I had been anaemic since I was 16 I was always told the weakness was due to this. I would take my iron supplements until my levels topped up then would start to feel better, until my level dropped again. I have been on and off iron supps most of my life. My periods are heavy so it made sense that my levels would go up and down and that I might feel weak after my period but never could understand why it would happen BEFORE my period. Two years ago I was trying to lose a bit of weight for a holiday and started doing quite a bit of exercise to get in shape. I've always been really active and the exercises I did were actually nothing in comparison to what I used to do years ago. I took on board the fact that I was obviously older and had two children since then but I had terrible chest pains one night and went to my local A&E. They did a chest xray and ECG and bloodwork. Nothing could be found so they sent me home with indigestion tablets. This then happened again quite a few times accompanied by breathlessness and feeling faint. I was sent for an angiogram. This was also normal. This kept happening for a while and although I do get acid reflux and take tablets for it, it didn't feel like just heartburn. I was then put on omeraprazole for almost two years. Although the heartburn settled I still had chest pain quite often but every time I saw the doctor and mentioned it he said it was just stress and anxiety. Last July I went to Cyprus for a holiday and on the flight on the way out, all of a sudden I came over really faint while sitting down feeling quite relaxed and eating. This left me feeling terrible, clammy and weak for the rest of the flight. I put it down to nerves and travel but it happened again five days into the holiday. Again, I was sitting down and this is the point I find confusing. I felt so bad afterwards that it ruined my holiday. I couldn't even go swimming or go shopping. My legs were just so weak, like I had the flu. I got in the pool one day and was so breathless I had to get out. When I got back from the holiday I went to see the doctor as I actually thought that feeling that bad I had had swine flu. I had never felt so awful. He said it was probably anxiety but would check thyroid, iron etc. It came back I was anaemic but not enough to warrant how I felt. I had started to go numb down one side of my face and then sometimes in my left hand and arm. I had heard of B12 deficiency and asked to be tested, in fact had to beg him to check it. It came back normal and was told to just take the iron again, the rest was probably stress. At times I really thought I was going crazy because I had all these terrible things going wrong and yet there was no medical reason for it. My legs ached, I sometimes felt so tired felt too tired to speak and when I did my speech would often be slurred. I would be freezing cold when everyone else was warm. I would be shaking inside when it couldn't be seen outside. I had chest pain and palpitations and became afraid to go out. The doc put me on propranolol. They made me feel even worse and started getting funny twitching all over my body. I would have pains in my hands feet and even (and I know it sounds odd but my veins hurt). Weirdly around Christmas 2009 I had started to settle down. I would get weakness every now and then but hardly any chest pain and no fainting. Last month, it all started again! with chest pain and aching all over. Have near fainted 3 times in the last two weeks. I can't find any triggers for two of the times. The first time was again, just before my period. I feel sick for no reason whatsoever, but never actually vomit. I then won't eat because of it. Today I have been shopping and been to parents evening at the school and feel exhausted and like I have the flu where my legs just ache so much I want to curl up and cry. I decided last week I would go to see the doctor again as I couldn't stand this any longer. Apart from calling me a hyperchondriac, he has told me there is nothing he can do for me as I have had all the tests he can send me for so, I should just try and CALM DOWN! I am so frustrated I actually cried in front of him and he said it was because I was depressed. I told him I was depressed because I don't feel well and I want my life back. I was actually really excited when I came accross this site, to actually feel like I am not CRAZY. I'm sorry it's so much to read but my symptoms don't seem the same as others as although I always feel giddy when I am upright I only seem to pass out when sitting or lying down. I don't understand it at all.