MaryJo

Hi Everyone, I have begun to notice a bit of a pattern occurring when I am coming down with a bug and I wondered if anyone else had had the same and if it is a POTS thing. I suddenly start to feel very depressed, I do not normally suffer from depression (if fact I am quite upbeat!) but I descend into a severe depression when I get a fever, and sometimes it is the first sign I am getting a virus. Additionally, I get brain fog where I can't remember things which would normally be so easy for me, and I feel generally agitated. It would make sense if it was a POTS thing since external temperature can affect it so I wondered if an internal rise could cause the same. Thanks, MJ

Dear Everyone, Does anyone get episodes of bradycardia in the morning? I have just had a holter done and I am going down to 38bpm at this time. I also get SVT and sinus tachycardia as well as the POTS, but I don't understand how the bradycardia fits in with all this. Thanks. Luv, MJ

Dear ALL, Thanks so much for all your replies. The diltiazem has now slowed me down, however I have had to come off it because I think that it was beginning to slow me down too much. I also have episodes of bradycardia in the morning so I have to be careful. I am going to be seen at BARTS in London on January 2nd so that they can evaluate both the v-tach and the supraventricular tachy. THanks again for everything. Love, MJ

Thanks Morgan, I really appreciate your reply. My real problem is not understanding what is going on. If it is just POTS then ok, this is just a nuisance, but I don't understand all the other things that are happening to me. Could it be that the atropine has triggered an autonomic response which is lasting longer than in most people. Any replies or advice is welcomed. Thanks, love, MJ

Hi Everyone, I was previously diagosed with POTS and with ehlers danlos syndrome. It's been a while since I posted but I have been in real trouble lately! In late September, my pharmacist accidentally gave me atropine eye drops instead of my normal artificial tears prescription (they are packaged very similarly!). I took it for about 7 days without realising, and firstly I lost vision for 2 weeks. Additionally, I felt really unwell, and I had a racing heartbeat. Basically, I have had sinus tachy since then. I was admitted into hospital towards the end of October because I became very bad, and a holter monitor picked up a 6 beat episode of ventricular tachycardia. I am now taking diltiazem and this is helping to slow the heartbeat so that it is mostly in the normal range now, except when I am moving about. A previous echo done in July was normal. Previous ecgs in the past have shown short runs of supraventricular tachycardia. The docs really don't seem to know what they are doing with me! They can give me no anwer as to prognosis etc, or how serious the v tach is in my case. I am aware that atropine can cause these symptoms, but they are of the opinion that atropine would cause an immediate problem which would not have been prolonged. All I know is that I was fine until taking the eye drops and I have been continuously bad since. My latest holter monitor did not show any v tach, just sinus tachycardia. I would appreciate advice from anyone on any aspect as I feel totally at a loss and I am getting no answers with regard to potentially how serious my condition is. They are still thinking about what to do. In particular, could the POTS be kicking in and making me more vulnerable to the effects of the drug? Thanks again. MaryJo

Hi, I've tried compression hose of different strengths and I have found that I can't tolerate 20 strength and above. I don't mind the effort to get them on , but they make the flesh on my legs really sore and uncomfortable. It's almost like my legs are saying, 'please do not squeeze me so tight'. I am currently wearing what we here in the UK call flight socks they are knee high of 14-17 strength these I can tolerate really well, and they help to stop the terrible aching which I get in my legs. I just wondered if anyone else found this, or if I am the only one. I do have EDS and so I wondered if it was a question of tissue fragility, but would be grateful for any advice. Thanks, Love, MaryJo

Hi there, I have gone down with a flu type illness and this is making me tachycardic. I get so tired when my pulse rate increases like this, I am breathless and exhausted. I know that everyone's pulse rate increases with a fever, but I wondered if viruses are known to make POTS worse and how you all cope if you get the flu etc.. I am not taking any meds for POTS but do suffer with it quite badly (can't work etc), I also have EDS. I've not seen any post about this but would be interested to know how you all cope when ill. Also, does POTS mean that it takes longer to get over the virus? Thanks in advance, and good wishes to all! Love, MaryJo

Hi, I would be really grateful for any advice on the following. Last Friday I basically missed two "proper meals", and most probably did not get sufficient fluid. Over the weekend I had a really bad migraine. I do suffer from menstrual migraine and so thought that it may be due to this as well. I am used to getting pain and discomfort in the eyes with this, but on Saturday I had a very strange sensation. It felt like hot fluid flowing from the inner portion of the eye to the outer portion and I felt it under the eye near to the cheek bone. I had a pulse varying from rather slow 60 to tachycardia. I am normally when reasonably ok around 78. I have noticed that even a fall to 60 is enough to make me feel rather unwell, and equally a climb even to 100 is enough to provoke bad symptoms. I know that some people on this site have far more dramatic rises and falls than this, but I wondered if anyone was quite badly symptomatic like me within these ranges. I saw my doctor who determined that my problem was not with the eye itself. My blood pressure was 110/65 at this time. I had caught up with my food by this time and had had plenty to drink. I'd really love to hear from anyone who has had this burning fluid sensation, and also from anyone who is highly symptomatic without a dramatic rise or fall in pulse rate. Also, can missing a meal or having a lighter meal cause POTS? Thanks in advance. Love, MJ

Hi Everyone, Firstly, can I give a real big group hug to every single one of you!!!!!!!!!!!!!!!!!!!!!! You've got no idea how touched I was by all your replies. I am normally ok, struggling like everyone else, but basically I get through with a smile on my face, and I am always ready for a laugh, but sometimes the depth of our situation really gets to you and it's frightening. I think that it is true as some of you have said that when it's taken a while to accomplish something and all our thoughts and efforts for a long time have been tuned to it that when it is over we are left wondering what to do. In my case I have had a lot of doors close in my face and sometimes I feel the pain of this. I hate the feeling of being so "in the air" a feeling I've had for a long time. | know that it is no good looking at what others are doing, and I know that it is easy to look into others lives without seeing the problems they face, but I struggled with the feeling that I seemed to be the only one who had not sorted herself out. I do not mean this as self-pity, but as genuine fear. I do not have much medical support. I have POTS through Ehlers - danlos. The only help I have is a once a year appointment for my joints, nothing for the POTS since being diagnosed. I was told to increase fluids and salt levels and that was it. I do suffer quite badly from POTS and would like to have had more medical support. Do any of you know where I am coming from about being left "in the air"? I've had this feeling for so many years now. I am trying to enjoy each day as much as possible so that I am not spending all my time searching and letting life pass me by. I am also afraid that potential employers may be perturbed by the amount of time that I had to take out, and may view me as a problem case, and not bother with me particularly with so many good straightforward candidates applying. I don't know how best to find out the truth of my situation, but would appreciate any advice on this. Thanks again for everything, I just needed a "pick me up". I really value you all. Love you lots, MJ

Hi, I'd really appreciate some support at the moment, things have been tough, but the worst of it is I am really taking everything out on myself. I've been really bad with POTS and EDS since I was about 15 (I'm now 32). Everything has been a big struggle since then. Last year I finished my law degree and got the second highest grade that they give, but even this achievement was dented by the fact that I had to take 6 years out of the degree because of declining health. I had no support at all at this time, and when I did graduate I only had my Mum to support me. I did not even put anything on this forum, because I know others have achieved a lot more than me and in far less time, and I felt so embarassed. At the moment I feel lost, because I do not know what to do any more. Before the road ahead seemed so clear, i wanted a career in law, but now I have really lost my way. To be honest, here it is difficult to get into law when you hit your thirties so I have to be practical too, but my confidence has been so shaken I do not know where to begin. I think that if I knew what I wanted this would help, but I think the dream has been shattered so many times, that I guess without realising it I am struggling to move forward. I desperately want to make the most of the situation I am in, but I have just lost my way for the time being. Apart from my Mum, I see no family, and I have two friends but I am unable to get out to see them because I am unable to drive at the moment, and there are a few difficulties. Sorry to go on, I know we all have problems and difficulties and I do not mean to take the centre stage with mine. I think the people on this site are great and so supportive to everyone. I'd just appreciate some ideas, in particular does anyone feel guilty because they have lost their path, and they are not working. I really struggle with the guilt, and blame myself, but others around me blame me to for everything. I'm not saying nothing is ever my fault, but I don't think everything is. Sorry again for my long chat, I just needed to vent a little. Most of the time I do smile and get on with it, but I am just struggling at present. Lots of love, MJ

Hi, Thanks for all your replies. In response, I am not taking any betablockers or any other meds at the moment. I think that I have a general problem with temperature control. I have EDS and POTS, and the EDS is also a lot worse when it is cold - many more dislocations - - - OUCH!!!!!!!! I put my central heating up to combat the cold, and woke up feeling drowsy and barely conscious with my heartbeat taking a nose dive of about 40. When I am like this it is dangerous because I am too weak to get up and take extra fluids etc.. I realised that the air had become to dry due to the heat!! How silly I am! It's so hard staying warm, but not getting too hot, so beware with the central heating, and allow some ventilation. Thanks, Love, MJ

Hi fellow Potsers!, Like all of you I suffer very badly when the weather is really hot, but now I am getting a lot of problems when the weather gets really cold. At the moment it is -5 in London, and I am suffering from greater exhaustion, faintness, and also reynauds. The reynauds is despite wearing thick gloves and generally preparing myself for a trip to the Antartic!!!!!! I don't understand the mechanisms that are at play with POTS and cold weather. In the heat the blood vessels dilate, hence the symptoms, but what is going on with the cold. Surely, if cold leads to constriction of blood vessels then our symptoms should improve? All I know is the problems that I am having, but I don't understand why. I would be really grateful if anyone could explain what is going on. Also, if you have any tips on the Reynauds, and keeping warm. Thanks in advance. Love, MJ

Hi, I was looking to get a HR monitor watch, (possibly the Nike Imara), but found advice on one web-site which said that the strap-type were not suitable for ladies, as they were designed with men in mind, and do not allow for women's underwear. The site suggested a sports bra, but I wondered if any of you have had any problems, since I have never heard this before! I know that you can get strapless ones, but I wanted something that could monitor closely when I felt ill so I could see what was happening with my pulse. Thanks in advance. Love, MJ

Hi Laura, I actually get it on both legs, but sometimes one is worse than the other. Thanks for asking. Love, MaryJo

Oh, Pooh, So sorry to hear about your friends, and truly hoping that you will now have some good news about those that are missing. I've been watching on TV and following the disaster, and was so shocked that people had been left without even water! Please know that I may be in England, but that I am thinking about you all and keeping you all in my prayers. Lots of love, MJ

Hi Everyone, Hope you are all doing ok, and keeping all my friends across the pond in my thoughts following Katrina, and hoping that you are all ok. I managed finally to get my compression hose (Jobst open toe, 30-40 thigh high), and was so excited at the prospect of feeling a little better with them. I did measure carefully and was well within the size band for the small size. However, following wearing I began to get a ring of swelling about 2 inches above the ankle. I have noticed this without the hose, but with the hose, my leg continues to ache and become uncomfortable. It actually feels better without the hose. I am not sure what's going on because I thought that the hose was supposed to help to combat swelling. I am not sure if maybe I should just be patient, and the swelling will go down. I have noticed that when I get swelling that it goes down following a night in bed, but will come up again. I am unsure how best to proceed and I would be grateful for any advice. My Mum describes the swelling as looking like a spare tyre or a ring around my leg. Any advice would be appreciated. Thanks a lot in advance. Love, MJ

Hi Nina, Just to say a great big well done, and to wish you luck for the start of your studies/work. Wow, your fantastic!!!!!! I am taking a year out to regroup and get myself together before I consider my next move. I would not mind taking my masters in law, but my health is so bad at the moment that I need to spend sometime to getting my life more organised, so boy I admire you! Sending a really big hug for of encouragement your way! Love, MJ

Hi, Yesterday I had a really bad POTS spell, very tachy, and exhausted. It has been very hot here in the UK! However, the episode was preceded by feeling very exhausted and extremely down. I do not normally suffer from depression, but I have begun to notice a pattern that often when the POTS is at its worse, one of the first symptoms will be a sudden severe drop in mood. I felt tearful, and as if nothing mattered any more. Also, I had become very forgetful over a period of a few days. When well, I have a really good memory. I am used to brain fog, and severe fatigue, but this was specifically forgetting dates, numbers and information which I would never normally forget. It was not until that I checked my pulse as the physical symptoms became more evident that I realised how ill I was becoming. I just wondered if anyone else had had low mood, as a preliminary warning to a bad POTS episode. Thanks, love, MaryJo Mar

Hi, Has anyone had swollen calf muscles? Is this part of POTS. I am within the correct weight band for my height, and although I have put on weight, I feel that this alone does not explain the increase in calf size. Does compression hose help? Thanks for your comments in advance. Love, MJ

Hi Everyone, I just wondered if anyone was able ot obtain compression hosiery in the UK at the required strength (30-40) and also if anyone had found any good cooling products here. I have been searching on the internet but to no avail and I have been ordering from the US. Just wondered what the rest of you in the UK did! Love, MaryJo

Hi Scooby2, Thanks for your reply, it was really helpful, but left me a little concerned. Please would you tell me about the risk of arterial disease and diabetes. How does this occur? What, if anything can we do to reduce the risk? This is the first time that I have heard of any risk factor, or read about it, so any info would be much appreciated. Thanks again, Love, MJ

Hi Everyone, Thanks so much for all your responses on this thread. Sorry that it has taken me a while to get back to you all, but I've been through a difficult spell at present, and when i am like this I get forgetful. I like the sound of the MIO watch, and i think that I will try one, particularly as you don't need a chest strap. I don't want to be obsessive, but thought that it would be useful during bad spells, and to get a better idea of what triggers my heartbeat to go into orbit or down in y boots. thanks again. Love, MJ

Hi Hayley, Firstly, can I say thanks and a big hug for all your replies to my posts, especially recently when i went through a bad POTS spell. I really feel for you in the work situation and know where you are coing from. I could not do your job either, and i think that your best bet is to seek something different. I know that you do not like the office environment, but I was wondering if something like working in a travel agent, as a supposition, would be good for you. Sorry it is not much of a suggestion, but i figured that maybe if you could find something for a few hours to get you by, while you are learning your arts and crafts that this would help you out, and then it would be great if the ebroidery took off and you could do this as a job. I am at a lost for something that I can manage to do as well. I think that i am going to hve to find something that i can manage from home, but i think that I also need to join a club or something, because I do not want to become a total recluse. I am so cut off right now, that i need to get out and meet people. sorry it is not much of an answer, but please know that i am thinking of you, and hope that things will soons work out better. Love, MJ X

Hi Perse, Firstly, many congrats on your funding and your achievement that's fantastic news and I can imagine how delighted you must feel!!!!!!!!!! sorry to hear about your grandad. I know how terrible the NHS can be. my father died 5 years ago from alzheimers, and although we cared for him at home and he died at home, any support from the NHS was appalling. From what i understand, oral hygiene, and more especially, good hydration is often neglected. i know it is all wrong, but I think that your family will have to do this yourselves to make sure that it has been done. It is very sad that we can not rely on the nurses, but if you can arrange for family members to do it, then at least you know it is done. Good luck on this, and I hope that papa feels better soon. Regarding the specialists, as you will know from my recent post, I am also concerned about continuing care, or rather the lack of it. However, I am beginning to look into all the measures that I can take myself to make my life easier e.g. compression hose, fluid, cooling vest, air con, etc.. I have felt like a guinea pig in the past with the docs.! Sometimes, i have spent a fortune on a specialist and then wondered who got more out of the consultation. i am another statistic for them to use for their research, and I paid for it!!!!! Sorry for the vent, but I feel so mad at times. I think that it is important to obtain a conclusive diagnosis through testing, but after that there does not appear to be much on offer. How will you manage at Oxford? How's your health now compared to last year? Do you feel that you are worsening as you get older? Love, MJ

Hi All. Many thanks for your responses, and tips re: the hose! I have ordered the Jobst opaque open toe in 30-40 strength. I will try these to begin with and see how i can get on. I will let you know. I have problems with lots of aching in my legs also which is only relieved through elevation, and so I think i may be getting varicose veins which will obviously be helped by the hose too. Does anyone know if there are any health warnings regarding the hose, other than not to wear them when sleeping? Many thanks. Love, MJ