MaryJo

Hi Everyone, I know that there have been a lot of previous posts on compression hose, but i would really appreciate your views on what strength to go for. i am unsure if to go straight for 30-40 or if to try 20-30 first. I have never worn compression hose before, although i have worn light support tights with a strength of 6, which frankly i did not feel the difference in wearing from ordinary tights. I know that it is recommended by Dr Grubb to try the 30-40 strength, but just wondered what you have all felt from experience. Many thanks. Love, MJ

Hi Hayley, Thanx for your reply. I am not on any meds any moment. Prof M did not want to put me on any meds and hoped that the extra salt alone would be enough. I am pleased in one way, because I understand there are a lot of problems with the meds, but at the same time, I have overwhelming fatigue, weakness, dizziness, and problems maintaining bp and pulse; since all this stops me from working, I am concerned in case there is more that can be done. However, I had a feeling that no meds and no continuing appointment system was the standard treatment that was offered in London. When I read the US posts on this site and read about IV drips and all the treatments and stuff, I am not sure what to think in terms of what is available here. If you read my other post, you will see that recently I nearly ended up in hospital following a recent severe attack. I am the sort of person who would avoid hospital at all costs, so for me to feel this way I must have been very scared. However, I know that they would not have known what to have done, and in addition, who would I contact to give them the expert medical advice in this situation? I guess I had better just try and keep well!!! At least we are reviewed for the EDS. Love, MJ

Hi Hayley, Thanx for your prompt response. I had an appointment with Prof Matthias for my results, but after that he basically wanted me to try the simple things (salt, fluids, counter-maneouvres), and see how i got on. I could get another appointment if I wanted one, but I just wondered if any London patients were being seen at a regular interval basis or were given other treatment, esp. meds. I think that our experience is the standard response here. I do worry though because considering it has such an affect on our lives we are just signed off. Thanks again. Love, MJ

Hi, I would be grateful for any advice on the following. I have POTS and NCS, but I am not sure what is going on when this happens. The other day I began to feel generally weak and ill and when I took my heartbeat it had dropped 20 beats from my normal resting pulse rate. I find now that when I feel bad that my heartbeat has dropped. I had to lay down because I knew that i would collapse, but although I was laying down, I still felt as though I would fall unconscious. I then made myself drink as much as I could and added some salt to the water. In all over a 3 hour period, I drank about 3 - 4 litres. After this my heartbeat gradually began to increase and I felt better. It was really scary, and I thought that I would have to go to the hospital (although I have not got a clue what good they would have done, as most of the docs don't even know about POTS). I don't know how best to proceed with this. I would like to have a patient care programme, like they do for asthma, or diabetes so I know what I am doing. I just felt so scared, but fortunately, I was able to improve with the fluids. I really have to keep my fluid levels up otherwise I become really bad very quickly. Is this a NCS attack? I am not sure what is going on. I also have episodes of tachycardia which are far more common, but I don't understand the slow unenven heart beat. Thanks for your replies. MJ

Hi to you all, especially those of you who have been tested in London! I was just wondering what treatment was recommended for all of us who who had been tested in London. As well as EDS, on the autonomic front I was found following testing to have POTS, NCS, a low general bp, and a high basal heartbeat. The advice I was given by the specialist was to increase salt intake, increase hydration, and to try counter-maneouvres. I was then discharged, although I can make an appointment to go back should I need to. There was a general reluctance to prescibe meds due to the lack of success, and side effects. I just wondered if this was generally what others had experienced. Thanks for your replies. Love, MJ

Hi Catherine, I have EDS 3 also, and I am under the 2 profs (Grahame and Matthias). I had my tests done at the National last year. I thought the team were really good, extremely pleasant and considerate. My tester was very concerned that the tilt table might make me feel really unwell, and urged me constantly to let him know if I felt the least discomfort and he would stop. I decided to have the testing all done in one day. I also live in London and for me coming back if necessary was not a problem. However, in view of the other testing that you require it sounds a good thing that you will be staying in. I also was diagnosed with CFS. I have terrible fatigue, and this is the main problem which stops me from working etc.. From the results at the national, I was diagnosed with both POTS and neurocardiogenic syncope, which apparantly about 25% of all people with POTS also have. I too, was very worried about the results, in terms that I thought if they were negative then why am I feeling so bad. However, in my case it did show the POTS and NCS. The 24 hour monitor showed generally low bp, and a generally fast heartbeat. I felt at the better end of how I normally feel on the day of the test, so I was worried the results would not show how bad I was, but I got the impression that even on a "better" day there would be enough on the test for the docs to realise what is going on. I found the National hospital quite pleasant, and none of the tests were worrying, I just had to lay back and let them do their stuff. I understand your concern about the test results, but as you have EDS, and this is linked to POTS from what I understand it is most likely that this would explain the symptoms. Good luck, and know that we are all thinking of you. MaryJo

Hi, Does anyone suffer with heavy, painful (dull ache) legs? As POTS causes blood pooling I guess this could put us more at risk of varicose veins, although I know that I am more susceptible to this because of the EDS. My main question is does anyone know if it is possible to have these symptoms prior to varicose veins being visible. At the moment I have some spider or thread veins on my thighs, but wondered if it was possible to have symptoms before they obviously appear. Thanks for any comments. Love, MaryJo

Hi Everyone, I have had irritable bowel syndromes for the last 19 years. Sorry to be graphic, but motions are very loose every day, and usually of semi-solid form. I have noticed that painkillers do slow down the process of elimination to what is probably more normal, but wondered if anyone had found anything else effective, as over the years I have failed to find anything that works. Thanks. Love, MJ

Hi Everyone, I am not sure if this is part of EDS or POTS, but I have had trouble with controlling bleeding on several occasions. On one occasions I went for a blood test and the blood ran down my arm and went on the floor and all down the nurse. She had to get a colleague to stop with her patient and assist. The nurse said that in 10 years experience that this had only ever occurred once. I now realise that I am especially vulnerable at the time of menstruation, and will avoid a blood test now at this time. Also, if a drug states that it is to be avoided by persons taking warfarin, then I find it helpful also to avoid it, because these drugs make my blood incredibly thin to the extent that it loses the sticky feel and becomes like water. My doctor did do a general blood test (I understand that there are more specific ones which can be carried out), but this was ok. I am concerned about the implications of this, and so I will go for further testing. Thanks for any comments. Love, MaryJo

Hi Persephone, Thanks for your response, and I hope that you are now feeling better yourself! Alpha 1 antitrypsine deficiency is a genetic condition which leads to premature emphysema, even though you have never smoked. It is diagnosed via a blood test which takes about 6 weeks to come back to the GP. It is quite rare, but not as rare as EDS. In terms of symptoms, you get repeated chest infections, shortness of breath etc. From what you described, I do not think that you have this, (but I am no doctor!). However, what you describe sounds like what happens to me when I get a rib sublux! I recently injured my rib area, and since then the bones pop in and out, and can move just by turning. How are things in the Bristol/Bath area? I visited Bath and Bristol last year, when I was not so bad and could still have fun. I had a great time. How are you getting on with your future decisions? I hope everything works out for you! Love MaryJo

Hi, I have had problems with mood too. I am normally placid and very easy-going in temperament, but sometimes inwardly I feel really angry at some people who have treated me badly. Obviously to some extent this is normal, but for me knowing my usual self, it is unusual. I have found that I feel this way when my health is particularly bad, and I am really struggling to keep up with things. I think that it is partly due to general frustration, but feel that there is also a hormonal or physical element to it. Love, MJ

Hi MM, Thanks your response has been really helpful. I have anaphylaxis to what I believe is aspirin, but the blood test result seemed to be negative for this. I first got problems from applying Bonjella (not sure if you have this brand in the States, but it is mainly used on the gums of teething babies; I used it to try to ease jaw pain due to the EDS), which contains aspirin. I was sorry to hear that you had to use your epipen in the past, but your information was really helpful to me as you are the first person I know with anaphylaxis and POTS!!!!!!!! Thanks for the info about mastocytosis. I don't know much about this, but will check it out. Keep Well, Love, MJ

Dear Sophia, Just wanted to say I was sorry to hear about the loss of your brother-in-law and I am thinking of you and your family. I also get really exhausted from crying and my eyes become really painful to the extent that I get very worried about the vulnerability of my eyes. My eyes feel so terribly bruised and painful. I don't know why this is, but it must be that the whole process, albeit good for letting our emotions out, exhausts us completely. I lost my uncle in February, and the exhaustion lasted for a few months. Take care of yourself, and know that we are all thinking of you. Love, MaryJo

Hi Everyone, I have POTS and EDS, (the EDS being genetic). I wondered what other conditions commonly occur with POTS or could be linked with it. I also have asthma (which I have heard is linked), but would love to know if anyone else has alpha 1 antitripsine deficiency (genetic chest condition), or has anaphylaxis. If there is anyone with anaphylaxis, (although the adrenaline is life-saving therefore necessary) can it make POTS worse? I have read that POTS people seem to get more allergies, but wondered if any of view have severe allergy, and have to carry adrenaline. Thanks, Love, MaryJo

Hi everyone, I read in a previous post that certain medications should be avoided when you have POTS. One of these concerned a medication "epipethrine"? that is given at the dentist. I would really appreciate any advice on this because I have not been told to avoid any meds. Is there anything else that we should be aware of if we go into hospital etc.? Thanks in advance. Love MJ

I am feeling a bit despondent at the moment, and I often feel guilty that I have been unable to work due to POTS/EDS. I have a good academic record (albeit I had to take time out to complete), and sometimes I get cross with myself and think that if only I could try harder then I would have made it. I am quite severely affected by POTS and EDS which causes many dislocations/subluxes each day, but the main thing that hinders my ability to work is the terrible fatigue. As I was never able to work, I have got to the stage where I am unsure if I am now just putting obstacles in my own path. However, I wondered if anyone else felt guilty and as if they were just trying to make excuses for themselves. I can't understand it because i have never been lazy and still push myself hard, and with the medical diagnoses, but there you are. MAybe it occurs, to some extent because most of us have taken a long time to get diagnosed and therefore may have experienced lack of belief to the extent that we now think we are imagining being ill. Thanks for any comments. Love MaryJo

Hi Everyone, It's MaryJo checking in to say I am ok, safe and away from the troubles in central London. I live in London (born and bred), and was deeply shocked by the events of yesterday. However, I am also deeply touched by the level of concern on this board, especially on this terrible event, but also generally when anyone of us is feeling overburdened. I just wanted to take this opportunity to thank you all. I would also like to especially thank MightyMouse who even took the trouble to remember us here in England by name. Love and hugs to you all. MaryJo

Hi Persephone, Guess what? I am from London!!!!!!!!! Whoopeeeee your first English person to respond. Aren't the others great though for responding even though they are not from this Sceptred Isle! I would love to meet anyone with POTS or EDS or both for that matter. It's a bit tricky for me at the moment to physically meet, but I certainly could do email contact to start with, and who knows what from there. I would love to be in touch with anyone from the UK or from anywhere else who would like to be in touch. Great to see this thread. Luv, MaryJo

Hi Jen, Thanks ever so much for your response on this one. I just did not want to overdo things and go from nothing to 30/40 compression if this was a bad idea. My brain fog was too thick for me to find the links too, so I really appreciate your help. You are a real diamond! Best, MaryJo

Hi Everyone, I was just wondering if anyone has either a heart rate watch or a blood pressure monitor and uses these regularly. Do you find is helpful to keep an eye on changes this way, and is it a more accurate tool than just relying on symptoms alone? I was looking at this and some of the devices are quite expensive, and therefore only worth considering if found to be helpful. Also I have read that you have to be careful because some wrist bp monitors are not always accurate. Can anyone recommend any brands that they have found useful? Best wishes to you all. MaryJo

Hi Jen, Thanks so much for replying and for the advice given. I'd really appreciate it if you could please let me know what pressure size to buy. I know the recommendation is for 30mg, but I did not know how comfortable this was, or if it was better to try a lesser pressure first. Thanks once again. All the best, MaryJo

Hi Felicity, I think I remember correctly from another post that you also suffer from Ehlers-danlos syndrome. (Sorry if my memory is playing tricks!!!!!!!!) But with EDS Type 3 local anaesthetics are ineffective. The docs do not entirely know why, but they do recognise and accept this as a fact. I did not realise about the adrenaline and the POTS though! Hope this is of some help.

Hi, I am about to try compression hosiery for the first time, and don't really know what to get. I have read from previous posts that they should be at least thigh high, but I am unsure what pressure amount to get. Would 20 mg be sufficient? Is it a case of trying and seeing? I was thinking of trying Jobst through the internet (I am in the UK and I am unsure what shops do compression hosiery, although flights socks seem everywhere!). I guess that flight socks are not adequate. I would really be grateful for any buying advice, especially with regard to the best type, brand to try (before I part with my limited money), and also advice with regard to correct measuring. In the past I've used elasticated bandages on painful joints due to the EDS and these really dig in and restrict blood flow, so I was a little concerned, but hope that the compression hose are different. Thanks. Love to you all, MaryJo

Hi Everyone, I am 31 and from London. I guess this is handy for the specialists!!!!!!!! I am under Prof Grahame (I've EDS III) and Prof Matthias. I was diagnosed last year after spending 15 years being diagnosed with M.E. I had the tests done at the National which confirmed that I had POTS and NCS. Prof Matthias told me to increase my salt intake and to try the counter-manouvres. He seemed reluctant to try medication because of the side effects. I am badly affected with both the EDS and the POTS. I had to take 6 years out from my degree in law which I have just completed at King's College London (and hopefully passed!). I am often really exhausted, in pain and can not think straight. I used to have a sharp brain, but there are times when the brain fog is impossible. I was planning on becoming a barrister, and got into bar school 5 years running, but could not continue due to POTS. The tests are not too bad, and the team at the National are really nice. The scientist who conducted my tests told me to let him know if at any time if I felt bad and he would stop. I did not find there was anything to worry about, and the results come through very quickly (I think about a week afterwards). Prof Matthias has left me with an open appointment. I am thinking of getting a referral back onto the NHS to see him at least once a year as I feel a little bit left out there to face it all alone, and I need to be monitored. Has anyone else been effectively discharged despite having positive tests? Anyway, it's great to hear from others in the UK who are under the 2 Profs, especially those of us who are trying to study. Well, I did say trying!!!!! HA HA!

Hi Everyone, I am from London, England and I'm 31. I would love to hear from anyone from anywhere especially if they are around my age. I get soooo lonesome with this condition!!!!!!!!!!! Hey, Persephone, you've really started something with this post, I can't believe the amount of replies and the amount of plb