Becca_7706

Does anyone else take a SSRI for tachycardia? I've tried betablockers and combo with midodrine but that didn't work my BP is really sensitive to meds so I was told to try celexa because that would help with my hr problems. Sounds a bit wierd to me, does anyone else take it for that? I've not started yet, when I was taking ciplralex my tachy was really bad and I didn't recover from my collapsing properly. Becca

I'm so jealous of the hot bath it's one thing I really really miss. I can't risk it, I actually blacked once having had one (on my drs advice he told me to try it and see - I'm not blaming him it was my fault I know heat is a trigger for me but I used to _love_ hot baths so much I decided to try it) luckily it wasn't deep but even so it freaked me out, seriously folks you do not want to risk blacking out in a bath - tis seriously scarey.

Angela, I'm sorry to hear that. I can only imagine what it must be like to get a referral and have that hope for it to be snatched away. I have no words of wisdom but I can offer a virtual hug. Becca

To be honest Dari, I think that it is because they think you couldn't be there for them - that was what occured to me. I'm not saying that you can't or anything but perhaps they feel less able to rely on you? I wonder if they are even doing it subconsiously - I mean the assumption is when people have problems of their own you don't want to talk to them about yours because of making things worse for them, I'm not saying those people need your help right now but perhaps they have always taken comfort that you would always be there 24 hrs a day without fail EVER and are now being shown an alternative to that and it scares them? This happened to me this week, a friend was having issues with her faith (which I've had myself) and eventually confided in me beginning with 'this is nothing compared to what is happening to you...' and it took a long time to convince her it was fine to talk to me, that I didn't mind. Could you try working that into a sermon, that you are *shock* *horror* human too - I remember going to a sermon a couple of years ago along those lines - I can't remember the scripture though which is a pity. It worked well (I knew the person giving the sermon well and he said it helped him and his wife immensley as they had a sick child and quite unintentionally people had stopped asking for their help). It also, in my opinion brings you closer to your congregation - personally I find it more of a comfort when I know the person preaching to me is human too and has problems as much as anyone else. What I am trying to say, possibly badly is that they are still a loving congregation just one who are needing to accept that their pastor is not the superhuman they once thought, once they realise you have an illness that comes and goes and that you are still the same old pastor you always were they'll come round you'll see. On a side note I disagree with the whole sin makes you ill theory anyway, but have come across many people who have asked me what I did to deserve this. In one of my more flippant moments I said I was Hitlers Mother in a past life - I wouldn't recommend saying that though, one person took me seriously Becca

Dari, I've had issues with my church too (though I'm not a pastor) and work as well. I just wanted to make a suggestion for why they appear to have 'turned on you'? People don't like to think of pastors as being fallible human beings - they should but they don't. It is possible that is why they are not understanding. Although that doesn't explain why you are having such hassle from the people who you are working for. Becca.

Dari, I can understand where you are and I want to iterate what someone said higher up the thread - the dr is protecting themselves because it is easier to diagnose something everyone has heard of than to say you have something more rare. I've seen several drs who were understanding to begin with, and then when I asked them to speak to others on my behalf backtracked like mad and when I asked them why I was told they were wrong originally and I must just have somatoform instead. I've had my specialist called a liar by these people as well. No-one wants to be the person with a misdiagnosis. BUT what about the misdiagnosis of telling us that we are to blame for our illness???? I discovered today that for 9 months my psychaitrist who is 'trained' (and I use the word advisedly) in physical long term chronic ill health had told my GP, orthopaedic surgeon and work that I am not physically ill. With *certainty* when he had told me he believed I was physically ill and the others were wrong I believed him so got him to verify my condition to other drs . I guess the point is that everyone can get it wrong, and we live in an age of litigation so it's each dr for themselves. Not at my best today so I hope this makes sense! Becca

Valerie, I only recently joined myself but I can say that I have found it to be a really supportive place. I hope you enjoy your time here! Becca

Today after a chat with someone who works in dysautonomia research about the comments on my file I went to see drs regarding Somatoform. It took a lot for me to do it, screwing up my courage to ask for help and to begin treatment. Knowing I have had symptoms for such a long time I knew it would be tough. Went to see GP she read through letter from Prof Mathias and no mention of Somatoform. No mention of psychogenic symptoms. No mention of lying either. Not that I think he or any member of his team reads forums on line but if so then I owe him a huge apology for what I wrote before and I did him a great diservice in believing those other people over him. There was mention of EDS, RSD, and complex syncope (combination of vasodepressor and vasovagal and possibly anoxic syncope) and the differential diagnosis was PoTS and autonomic failure which seemed a sensible conclusion but that wasn't conclusive enough so they want me to go back again for more guinea pig trials next year. I definitely have autonomic problems of that there is no question. So I went to see the psychaitrist, who has spent 9 months lying, not only to me but to my GP, orthopaedic surgeon and work byt telling them there is nothing physical wrong with my body. His diagnosis has always been somatoform. Even though I disucssed it with him and he said it wasn't that. Today he told me that somatoform is the obvious conclusion for people like me. He told me that he wasn't suprised I couldn't cope (apparently he would be worse but hey that's life) and they could do nothing for me. He gave me a prescription for pills he gave me before which made me worse (but my tachycardia is getting worse so I need something to slow it down and this was recommended if it doesn't work they might try something else). I know this probably sounds silly but now I'm scared really I should be I mean I've been proven right but now I'm just scared. I'm losing my job and my future terrifies me. I'm not coping and just wanted some support really. x-posted to NDRF

Shame I don't live in Scotland!

Hello Persephone, I mentioned in another post above that I'm not so sure Professor Mathias is saying what they are saying he is. But because my notes are being witheld from me I have no way of knowing for sure. It was Professor Grahame I saw when at Queens Square he is involved in research with Prof Mathias regarding EDS and Autonomic problems and is kind of attached to Pro Mathias via that (I think). I'm sorry to hear that someone else has had the same problems as me, but in a way it helps because I don't feel so alone. I don't have anyone else to treat the autonomic problems (everyone local says I'm making myself ill) so Prof Mathias is the only hope I have. I thought I was refused my notes because of my mental health which means I am at the mercy of these people who are telling me I'm not living in reality and making myself ill which is making my mental health even worse and is really Anyway my treatments are: *drum roll* Propanolol (for panic attacks that were causing the blackouts even though I wasn't having panic attacks because they were diagnosed as such and I was on it for over a year and it caused circulation problems and worsening syncope but I wasn't allowed to stop it just because of that - I hated it which I'm sure you can tell ) Midodrine (which turned my legs blue, swell and made them cramp continually - even when I was taking half the smallest dose this isn't an option to re-try because of my hand troubles mean I cannot cut pills up) Cipralex (SSRI which made my syncope much worse and I stopped it after a few days because I live alone and it gave me hullucinations as well which were frightening) Gabapentin (gave me hullucinations and didn't touch the pain it was prescribed for at all) I keep myself hydrated (I drink an awful lot!!) and carry a portable stool with me so I can get around and be able to rest easily when required. I only have cold baths and showers (because the heat makes it worse), take a stool softener because otherwise I blackout when going to the toilet and am taking a lot of painkillers for the RSD/EDS pain. I guess right now my problem is pain as the weather is getting colder I'm finding it hard to walk because of my foot (my blood pools in my right foot and has done for years and now I'm getting pain with it too) and my hands are painful and spasm (the left is worse than the right but the right is getting worse too). I'm not too sure what Prof Mathias could do, his registrar suggested midodrine which is the med of choice for someone with my reaction on tilt test but because of the problems I had they are unsure - typical me really! Becca

Linda, I developed Agorophobia directly related to my condition about this time last year. It was due to having collapsed in a road when I was alone on a street and no-one helped me (it wasn't the first time it had happened but this time really scared me). I was terrified of going anywhere. It had been developing anyway I think because I had a flashback on a bus a few months beforehand and had to phone a friend to help (the bus driver apparently kicked me off his bus and bearing in mind I live in an isolated part of Wales that is no joke) who wasn't able to come for a long time. There are many books on agrophobia though I must admit I didn't find them helpful. They are generally based on CBT and the fact that your fear is not going to happen which of course is untrue in this disorder (I'm referring to both PTSD and syncope here). The therapy I had for it was useless because it was based on me never fainting again (when I did faint I was blamed for letting it happen) and the medication they gave me made my syncope worse therefore making the agorphobia worse as well. Still there? That's the negative part of my experience over Right this is what helped me (I considered PMing the info but someone else might find it useful who reads your thread). I'm sure this is what your psychologist will suggest to you. First it isn't based on things never ever happening again - you need to be realistic here, hiding behind 'it won't ever happen again' will make things worse when it does. Second what exactly is difficult for you right now? Write an entire list. Third buy a notebook Fourth decide what is the smallest step you can take might be to the front door or to your garden gate alone (it is important it is small and achieveable) Fifth RECORD what you have done in the notebook. Sixth repeat steps four and five doing something that is more than before but not too big an increase - slowly regain your condfidence. There will be days when you can't go beyond what you have done before choose something you done and do that because then you have done _something_ and record it. REMEMBER: You will have set backs but by recording exactly what you do and when and how you will gradually gain confidence again. It is important to record the postives of doing it acknowledge in your mind if you got panicky or if an episode occured but keep the notebook for positives. When I was told to do something similar by a therapist I was told to write down everything that I felt and had happened but I found myself concentrating on the negatives only then by forcing myself to look at the positives and simply acknowledging the negatives I found it more helpful. I did this when leaving the house and using public transport again (something I have to rely on) and it really helped me. I have literally filled several notebooks to prove that it happens less than I had come to think (I was thinking it would happen every time I left the house). Two other things helped me one was helping someone who had a seizure one day - I realised that if I could help someone who was in trouble there was no reason whatsoever to assume someone else would also help me when in trouble the other was creating a postives scrapbook which was essentially a scrapbook of every single thing I had achieved from learning to use the toilet via qualifications, coping when I was first diagnosed, undertaking physio etc etc - everything is in there whilst it means little to anyone else it really really boosts me to see what I have achieved that is positive in my life so do try that as well. Gosh what a long post! You can PM me if you like. I have been where you are and definitely appreciaite what you are going through. I hope you are able to get these suggestions working for you too. I did them out of desperation because nothing else worked for me. I hope they help you too and I would have found having someone to talk to who had been in the same situation really really helpful at the time. Becca EDITED to Improve English in step Six

Dayna, I don't mind you asking! RSD = Reflex Sympathetic Dystrophy. Becca

I thought about the book thing too, I have been for awhile, maybe when I am in a better place I could do that. I think the problem with me is I have a long psychiatric history of problems as well as my physical issues. I was an alcoholic for years, had PTSD and depression which led to an attempt on my life. I have seen psychitrists/psychologists who have said all that means I cannot be phsyically unwell too in fact it was a psych who caused the PTSD in the first place! They are trying to get me into therapy that I have been told categorically to refuse by private psychs. In fact the private ones all said I was physically ill not mentally ill even knowing all my history but the NHS ones are saying they are wrong and I must have unresolved internal conflict that makes me ill. I'm so sick of them telling me how I feel! I wish I could go private again but can't afford it I'm sure they would be able to offer me some help in finding better coping strategies. I saw a cardiologist last year and he said a sign of a good doctor is one who knows he is human. One who accepts the patient _knows_ what is happening in their body and accepts that they cannot always fix someone but _can_ support them and who is willing to read through journal articles and notes from patients (I sent some to my dr then to educate him which actually just annoyed him) all research as far as he was concerned was welcome! The ones who don't should be avoided at all costs. Poor man had only been in the UK for a few months and didn't realise that meant 99% of his co-workers!

No. I did say about it to my local one and he said I couldn't possibly have it because I would have been ill with joint pain and cracking joints since birth (which I have but had thought it normal because the drs told me it was and I should ignore it and lets face it joint pain, skin problems and over extending joints aren't anywhere near as concerning as syncope and RSD is) but I must have had syncope since birth too and since the syncope started later it couldn't have anything to do with it and must be somatoform. If I can work out polls on this board I might put up the same one I did on ndrf and ask people who have EDS if they had always collapsed/had dys issues or not. This is gonna sound wierd but bear with me, it means a lot to me that they have lied and verbally abused you too. Helps me to feel less alone. I don't mean I'm glad you've been through this (I wish you hadn't had to!) but it helps me in ways you can't understand and I appreciate you sharing it with me.

Yes that's right. That's what they (Him and Prof Mathias) told me too. Which was great until I was sent to the psychiatrist who said EDS wasn't a 'real' problem and didn't mean anything at all and I had wasted their time as I clearly had nothing physical wrong with me. Before I was discharged Prof's registrar (can't remember his name but he was really nice) said I hadn't wasted their time and it did mean something. I'm getting so many conflicting messages from the medical profession! It's good to hear you have seen them and they said the same thing to you. Makes me wonder if the psych team I'm seeing are just winding me up saying what they are. Which really makes me angry as they were so nice to me and professional (and drs just haven't been at all with me) and I hate to think they are saying lies about them. Thanks for posting! If I can work out PM I'll PM you if you don't mind, though I am suffering from technologicalitis today! Becca

Hi Tanzanite, I did see a Professor Grahame when I was in to see Prof Mathias. He was the person who diagnosed the EDS!!! Prof Mathias and his team said it could be causing the problems I had and it was common to feel really ill for sometime on tilt test but no indication if you have EDS and Professor Grahame agreed. He diagnosed my RSD too. Do you think it was the same person? He was really nice but um liked to talk an awful lot and didn't have time to talk about the EDS to me because I had to go for a prolonged tilt and couldn't come back. Becca

Hi Tanzanite, There's a reply to you below. I hope this works okay. I seem to be having a funny five minutes at the moment! Becca

Hi Sophia! Hope you're well and don't mind reading about my trials here too! I'm not sure that prof Mathias has actually said what they say he has but as they won't give me access to the notes I can't say for certain and that is doing my head in! I don't want people to think he has treated me badly, him and his team were very understanding when I saw them. I honestly don't know what to think - I mean maybe if I had a normal experience with drs then I could say that it hadn't come from him, but I haven't. You know (cos of my miserable postings on ndrf) that everytime I think I have found someone to help they try a single medication and then boot me out the door and it is difficult to believe that they haven't reacted like that too. I guess what I am trying to say is I don't have definite proof he has written what they say, and they were so great with me that I don't want to put others who might read my thread off seeing him and his team. It is possible that I am being told he has said that so I fit the theory of the psychiatric team I'm under and they don't want to accept they were wrong. I desperately want to believe that is true but it is hard to when so many are telling me it isn't. Oh and the picture is lovely! Thank-you. Becca

Julie, Thank-you for replying to me. I did feel validated by my dx, right up until I had my mental health crisis and now they are refusing to accept I am anything other than attention seeking with everything I am going through. It was a shock to get validated by Prof Mathias and his team and the other specialist he sent me to for the EDS and RSD (I didn't expect them to help me at all) and in an ideal world I would have the support I need to come to terms with that and what it means and have some support for it instead of having my subconsious blamed for it. Especially as these drs know I cannot have psychotherapy (due to problems with it in the past) and cannot afford to pay for support (so that's why I'm seeing the person I am for therapy because they are free - there really is no way I can possibly pay for help). Thanks again! Becca

John, I will indeed look at that thread. I should have done that in the first place instead of writing such a depressing first post! Thank-you! Becca

Hello, I'm new here. I've been posting on ndrf (I'm Becca_2204 there - I meant to register with the same name here but successfully registered under a login I use on a disablity site in the uk instead ). A couple of people on NDRF recommended I came over here and used these message boards too (maybe they are trying to get rid of me ) I've had syncope since 14. I've been to see numerous drs, all of whom (aside from Prof Mathias) terminated treatment saying I was mentally ill only and should try harder to be well. The jury is still out on Prof Mathias. As nice as he and his team were, the psychiatrist I saw when there wasn't understanding at all (I didn't need to be told I should bully myself off the floor because my condition cannot possibly make me as ill as I say and that both the conditions I was diagnosed with - EDS, RSD and ?vasodepressor syncope were totally normal and meant nothing at all). Just before I went in a friend with syncope died (she killed herself after being seen in A&E one day) and it took 4 weeks before it really hit me and when it did it totally knocked me and still is. I'm finding it very hard to cope with - the diagnosis I've been given, if it means what they said it did at the time (someone else diagnosed the EDS and RSD when I was in hospital) and I saw a GP who said they would sort out DLA (and did!) and was understanding about how hard everything was and said I needed someone professional to talk to. I saw a therapist but she has made things even worse - she told me that I should tell myself I am fit and healthy and happy every day several times to stop me blacking out and being in pain - she said the EDS, RSD and vasodepressor syncope is _always_ psychosomatic and indicates somatoform especially in someone who has chronic attention seeking (I've been feeling desperate so I contacted the crisis team for support - twice in a week but they recorded it as attention seeking only even though I contacted them because I was losing control of my addiction again (but this has been ignored)). She said I should lie if anyone asked me how I was and say I am fine and smile all the time to make myself happier. Now I'm being told that Professor Mathias thinks I am an attention seeker too. I've been told to stop bothering doctors because it is obvious my subconsious is making me ill because I'm lonely (even though the cause of that is having to use friends as carers and them getting fed up which I can't balme them for at all - who wants to spend a friendship helping someone wash and clean themselves and picking them up off the pavement all the time??) oh and I'm stupid. I was told to look up somatoform and RSD and syncope to see the diagnosis is correct and she is right there are many journal articles that say these conditions indicate somatoform but where does that leave me? I went to see this therapist to come to terms with my friends suicide and the fact she was left to cope alone with her condition but she said what mattered was my being so dramatic and silly - she said my refusal to attend A&E when ill meant I must be lying (my reason for not attending is being told I shouldn't attend just because I pass out was called rubbish). So basically my mind is telling lies through giving me these symptoms subconsiously because I told lies when younger and don't anymore and if I pretend I am fit and healthy and happy I will be. She said my life is a fantasy world and I should wake up to the fact that no-one is ever going to help someone like me. Can anyone here relate to this? I'm sorry for going on so much on my first post and for it being so depressing. I'm having one of my bad days today Becca