catmcgrath

Hi Sue, I live in London and see Profs Grahame and Mathias too.. I have EDS hypermobility and POTS but everything is a bit complicated by the fact that I have had a cerebral anuersymal bleed in my brain which gives them something else to think about. I recently saw Prof Mathias (he is so lovely) for my test results which were interesting and explained a lot about why I feel the way I do , my HR ranges from 42 to 140 and when I excercise it likes to be at 170 which sends the gym machines into warning messages! I am not on any meds as we are trying for a baby so the prof has me on loads of salt and fluids, I am now addicted to salt..can't get enough of it, I'll even turn down chocolate for some salted cashews! It is difficult to live life with POTS and EDS but you will find support here and I wish you all the best for the future. Hope all you other UK guys are OK, sorry not been on for ages but somethimes I feel less down about being ill if I stand back from it for a while and pretend its not real if you know what I mean! Catherine

Hi! We think my mum had some ANS dysfunction symptoms as my dad says she used to get dizzy standing up (sadly she died when I was 7 so I don't know any more). Interestingly , her sister, my aunt is also a patient of Prof Mathias and was diagnosed with pure autonomic failure ten years ago. The genetic link is very interesting and something I know is being researched. Catherine

Hi I have EDS type III and POTS. In fact it was during a consulatation with Prof Grahame (rheumatolgist with special interest in hypermobility here in london) that my POTS was diagnosed. He told me that he always checked his EDS patients for ADS problems and then refers to Prof Mathias for further tests. Both Prof Grahame and Prof Mathias believe that there is some link between the two conditions and having a combination of the two may be a new condition in its own right. I know they are researching this link together and will attempt to find out more when I go in for my week of tests in a few weeks. I do not think they have had anything published yet.

Just to throw another thought in...my psychiatrist was quite concerned about all these tests and the fact that it appears that there is little help that can then be given. He was concerned that it was generating too much false hope from me and that in reality the tests are being used in building up research into the condition for the future. Of course this is great if it means they may eventually find a treatment plan but my psychiatrist felt that perhaps if something can't be treated, is it better that the patient doesn't know everything that is wrong with them?....interesting... Sorry to hear how ill you have become recently persephone, thinking of you.

Thanks Mary Jo for your kind reply, I feel much better about going in now but have just replied to your new post about continuity of care as I think you raise a very good point. My fatigue is disabling too and I guess a part of me is just hoping that they will be a magic pill at the end of these tests and I will feel like the old me! Well, I guess it is good to be positive! I didn't realise you could have all the tests in one day, it was never offered to me as an option maybe because of the other doctors I have to see but I would have prefered that as I hate being away from home. Thank you again for your reply, its great to talk to other UK people about their experiences as it looks as if they are so different to those in the US. Please feel free to email me, you never know we might live near enough to each other to meet up for a moan! Catherine x

Hi Having read your experience I feel even more resigned to the fact that after my test with Prof Mathias in Sept I might be no better off in terms of treatment and therefore feel just as ill. Are you a private patient or NHS? I am lucky enough to have private cover so I wonder whether this will make a difference in terms of appointments...it wouldn't surprise me. Maybe another factor is the amount of patients Prof Mathias can physically see as he is referred to from all over the country, although he should have a team to help with follow up appointments. I also have EDS 3 and saw Prof Grahame, he said he would see me again if I wanted but no regular reviews, who do you see and is this something I should be having as I have chronic pain. Catherine

thanks Hayley it really helps to know that it has been a good experience for others. yes I have been diagnosed with EDS type 3 and POTS but things are a little more complicted as I have residual brain injuries from my haemorrhage so Prof Mathias is going to check for scarring on my brain. It seems a long time to wait for the results but then I guess there are a lot of tests for them to look at. I already have a psychiatrist and CBT guy as I developed severe depression after my brain haemorrhage 5 years ago which I am glad to say is slowly improving although finding out about the POTS stuff hit me quite hard. The doctors had been putting my extreme fatigue , nausea, headaches and dizziness down to recovering from the brain injury and/ or CFS but it looks like some of these symptoms might be the POTS. I am still getting me had around it all but at least I now seem to be on the right track to getting some appropriate treatment. I've been telling my doctors for years that it wasn't CFS but they seem to like to put a label to your symptoms. I am really hoping that after the results they can help, especially with the fatigue as I am 32 but feel like I am 92! But I guess there is no miracle cure. thanks again and I wish you well x

Hi ! I am finally booked into the National hospital in London with Prof Mathias for my tests on 4th September and would really like to hear from anyone else who has had their tests there so I can know what to expect as I am very nervous! I know I will have tilt tests but what else happens in the 4 days you are there? I have searched the site but can't find any precise details. Also , when do you receive the test results? I am also having extra neuro tests as I have had a brain hoemmarrhage as a result of an anuerysmal bleed which they want to check isn't related to my EDS. Has anyone else had an anuerysm? I am also concerned that Prof Mathias wanted me off my anti depressants for the tests as apparantly they can interfere with the results but my psychiatrist has said no. I am really concerned that the tests won't show my correct state because of this and make them worthless. Has anyone else had the tests whilst on venlafaxine (effexor). I am so relieved to be finally going in but also scared at what will happen..I think I am mainly scared that they will not be able to find anything wrong and won't be able to help me if you know what I mean. On a side note, we in London are still "not afraid" and will not be beaten by these terrorists. More arrests today, unfortunately very close to where I live in north London. Catherine

wow! thanks! good to know about the search feature!

Hi! I just wondered how any of you felt whilst pregnant and after having the baby. We are really wanting to try for a baby but are worried about how my body will cope. Unfortunatley I am also recovering from brain surgery for a cerebral anuerysmal bleed 5 years ago so there are more compliations but I think the majority of my symptoms, extreme fatigue, dizziness, tachycardia, nausea are all POTS related now. I am also waiting to go into the National hospital in London for test with Prof Mathias (early sept hopefully!). I am assuming that if I was pregnant they couldn't do the tests....it's really tricky as my husband has just said to me why bother with the tests when they don't seem to be able to do much apart from confirm your ANS dysfunction..I understand where he is coming from but think I should have the tests. He really wants to start trying for a baby and I keep saying when I am feeling better...but as you all know will I ever really feel well enough.. Catherine x

Hi, sorry have just seen your post and wanted to say that you must be careful going onto venlafaxine (trade name Effexor). I have been on it for 2 years after suffering a cerebral anuerysmal bleed and having severe depression. It is a drug that is fairly difficult to come off as it has quite bad side effects. I am trying to get off it and it is extremely difficult. Interestingly though my POTS symptoms have got worse as I have decreased my dosage which has intriqued my psychiatrist! I'm not saying don't go on it but please look into the side effects and make an informed decision! Take care and keep well! Catherine

Hi, I am fine and so are all my friends and family. We live in London and because of where the bombs were placed many of my friends had passed through the areas on earlier trains. It is a scary thing to have happened but not all together unexpected as we have been hearing from the police that they have foiled plots in London for a while now and it was only a matter of time before one slipped through the net. We have to move on as normal and not let these people control our lives. Thank you to all of you for your concern and like many of you my thoughts are with those who have lost loved ones. Catherine

Hi! I am 32 years old and have just been diagnosed with EDS III and POTS by Prof Grahame and Prof Mathias here in London. It is great to have found this forum as it is a lot to get my head around! I have been recovering from a cerebral anuerysmal bleed and brain surgery 5 years ago which left me with some neurological problems and hemiparesis. I have seen many doctors as my recovery has been slow and over the past two years was labelled as having CFS and Fibromylagia and hypoglycemia! It finally looks as if the true diagnosis of EDS III and ANS dsyfunction has been made and maybe now finally they can do something to help me feel better. I am going into the National hospital in July for the tests with Prof Mathias (what a nice man!) and wondered if any of you had had them and could tell me what happens as I am a little apprehensive. I think my biggest concern is that the ANS dysfunction treatment is a bit hit and miss and despite all the tests etc nothing will really change. It's really hard to imagine feeling this tired and ill for the rest of my life. I stopped working after my anuerysm but am in the process of completing a MSc which I do part time. It's really hard but my uni are great and very supportive and it gives me something to aim towards in life which is so important especially when you can't go out to work. Best wishes to you all Catherine