Maggy

Hi all Previous to becoming ill with POTS and PAF i was not allergic to anything, since this wonderful illness has taken over my body i am finding out that i am getting different sorts of reactions to some things that i have always used as well as to new things. The sticky pads that they use for heart moniters caused swelling and blistering along with micro pore tape used recently to stick I.V needles on to skin. Antibiotics that i have taken years before that i was fine with has now just caused an allergic reaction. A face cream that i used turned me in to a blotchy fat faced monster( my husband commented he could not notice the difference, HA HA). Even some foods are causing problems now. Why is this? is it down to the weekened immune system? Any advice would be great as i have read previous posts where many of you say you take allergy shots, just wondered if you have always been like this or is it connected with your illness? Thanks for any help. Maggy

Hi can anybody shed any light on what is happening? For a few months i have been having episodes of feeling blank followed sometimes by passing out. i can be sitting or laying when this happens and it is totally different to when you pass out due to low blood pressure. When you are out of it people can be talking to you and you have no idea of what is going on. At present i am under the care of the hospital at home having I.V antibiotics for another long standing kidney infection. While the nurses were here they did the normal obs including temperature which was perfectly normal as i am now almost clear of infection. a few moments later i decided to have one of these episodes and i found out afterwards that they took my obs whilst it was happening. My temperature rose up to over a hundred whilst it was happening and then a few mins later when i came round it went back down to normal. I am confused and so were they. Can anybody explain why?

Doctorquest, Thank you for taking the time to reply, I have an appointment with my consultant tomorrow so i will suggest Midodrine and see if he feels it is suitable. I have only tried the one beta blocker in the past( Bisoporol 20 mg) and it has worked really well for the last 18 months, it is only recently it has failed to work. I think it will be worth trying something else just to stay on Lyrica. Thanks again Maggy

Hi, I know that a lot of you have a lot of knowledge about ANS, can someone explain please how your BP and heart rate and every other symptom that we suffer from, can vary so much from one hour to the next. How can you be treated with say beta blockers for high heart rate when one min its really high the next really low. Or even for example if your BP was normally 150/90 they may treat you for high BP what happens then when for the next few days even if you were not on medication for it, your BP then goes really low for a few days, surely being on medication to lower it in the first place would then make it really really low.??? I hope im making sense? as you can see im a bit confused. Is it just adrenaline rushes that are causing these problems or is this how the ANS works? And rather than doing a new topic can i just add one more question ? Spelling of the next question may keep you guessing. Catchermine and norephine levels. What are they being tested for ? I have tried researching but struggled to really understand what it means for somebody with POTS and progressive Autonomic Neuropathy. Thank you for your help and i promise i wont start any more new topics . At least until tomorrow. Sorry why do our sleep patterns vary so much i.e dont need to sleep for few days then can sleep for week or two, i cant find any pattern to this. Sorry to keep rambling its now four a.m and unless i wake my children up, i have nothing to do so i thought id research, im very very bored. Obviously you must all be on meds to help you sleep...... lucky you Ill go now . Bye

Sorry its me again, Forgot to add, Many of you are suggesting to come off this and try an alternative, Have you any suggetions at all please of any alternative that would control the nerve pain . I have tried Gabapentin but with no sucess at all. Thanks for your help Maggy

Hi Thanks for all yyour comments, its interesting to read about how others have managed on Lyrica, i am due to go back to my G.P on Tuesday to see if i can get 100 mg capsules and try half a dose, the reason they put me on 600mg a day was because i was on Gabapentin 1500mg a day and they did a straight swap over, but its worth a try. Docterquest. My heart rate at the minute is high anyway as i have just come off beta blockers that were not working to well. Before taking Lyrica my HR is 100 at rest and to be honest i was struggling to move much so i guess on standing poss around 140, BP was usually around 130 / 80. Whilst Lyrica was making me active HR was 150 at rest and 220 when moving ( very fit ha ha). B.P 180 / 125. When Lyrica was wearing off B.P was dropping to 80 / 60 ish sometimes dropping lower always causing me to keep passing out. I really really dont want to come off it as for the first time i have NO pain, and i am able to do normal everyday things even if it is for a short time each day. I would love to hear your thoughts on this . Thanks again everyone. Maggy

Hi Becca, I am also from the U.K, i understand what you are saying about the support system or lack of it in the U.K. I am sorry about the loss of your friend, you do have a lot to cope with. I do agree that once comments are written on your health records it can be a vicious circle trying to get someone to listen to you and give you the support that you deserve. I agree what the other people on this forum are saying, it is definatly true that you have to research for yourself and hopefully find treatment to help you physically manage through everyday life. As for friends becoming full time carers i do agree. I have now been awarded funding for a full time carer this is all paid for, so it gives me my time back with my friends. If you are interested in finding out more just let me know. As for your counselling or support that all of us need and struggle to get , im afraid i have no positive advice as i have felt they have done me more harm than good. I know there must be some good help out here in uk i just cant find it yet. Anyway i really hope you get the support you deserve . Take care Maggy

Hi cathy I have been having episodes exactly the same as you have described. I have these quite frequently, at the time it is happening i ( i have sat now for quite a while trying to find the words to describe my experience!!!) I start to tremor then my limbs start to shake , i feel that energy is dropping out of me , my vision rapidly goes blank, its not that i cant see its that there is nothing in my mind telling me to see!!! sorry that sounds wierd. I can just about distuinguish that people are around me and the kids have said that i have answered there question , just about and that i look odd, Thanks kids. My head feels tooo heavy for my neck. After laying down it does eventually wear off but this is happening a lot just recently. My consultant has also mentioned PAF and my other symptoms have deterioated rapidly as well. I cant help you with what is causing it but i just wanted to let you know that it could possibly be just another symptom we may have to deal with. I know it reassured me when i read your post . Hope you get some answers soon. take it easy and have a nice day in bed. Maggy x

Hi everyone, I am stuck in a dilemma and don't know what to do. I am writing this to find out from people who are struggling with disabling symptoms throughout every day life the same as me. I have been prescribed Lyrica and have been taking it for about ten days. My life before lyrica was spent lying flat most days ,constantly in severe pain and if i did go out i was in a wheelchair and i have to have a carer full time, so i felt like i have lost a lot of independence and constantly needed someone when bathing so life hasn't been too great just latly. Anyway since taking lyrica that has changed considerably for a short time during the day but the consequenses of taking it are not that good. Sorry sever brain fog at the minute and hands shaking please excuse the spelling and rambling on.. I will try and get my point across. When i Take lyrica within an hour i am pain free!! i have energy!! i really can't keep still or if i do my body will explode!!not nice... so for about four hours solid i can get up speeding aroun. great you say whats wrong with that? Well the body isnt able to keep up with this and whilst taking it heart rate and blood pressure is really high and after 5 hours it starts wearing off then the blood pressure drops really low so that if i raise my head i pass out and the pain is a lot worse in my body from doing too much. Non POTS people are telling me to come off it as the short the side effects are too dangerous. Ifeel that at least for a few hours of feeling like a healthy person again its worth taking a risk. What would you do? Sorry about the rambling i am benifiting from Lyrica and struggling to sit still long enough to write> Thanks for any advice. Ill just RUN off now and hoover ! ill be back in about four hours when im lying on sofa not able to sit up. Thanks Maggy.

Hi I have recently been to the optician and it has been discovered that i have problems with my eyes that has been caused possibly by nerve damage. The reason i wrote this was because when i saw the T shirts it was the first time i had noticed that i coul not see things as clearly as others. I wondered if this was a POTS thing and maybe some other people with pots noticed this or if it was just me. My Husband and children could all distinguish the difference between the colours . Any way it seems that it maybe is just me that has got this problem, another symptom to add to the list!!!! Anyway thanks for the imput and thanks for the T shirt at least others will be able to read up and understand our condition a bit more. thanks again Maggy x

Hi Thank you so much for your response, since writing previously i have now been on Lyrica for over a week, i initially went on it to control the pain that iwas getting from the periphial nervous system? ( please put me right if i have this wrong) but im sure that was the correct term that the Dr said. Anyway my version was that it was to help stop the feeling of all the pins that was sticking in my body, and the burning sensation that went with it. But suprisingly i feel like im on top of the world.... i can whiz around the house cleaning, cooking, etc and dont stop chatting, its not just that i cant feel my pain anymore , i cant feel my body. lol Its ok except that i keep bumping in to things, i feel very clumsy with my hands and any large movements and i keep seeing things, especially when i am sitting down or asleep,not a good thing for my husband as when i was asleep last night the haibrush was attacking me!!!!, i was really freaked out and kept grabbing him. My heartrate is still way above what it should be ( i still need to do something about that) and my blood pressure is high on standing, but 76/ 44 when i am laying down ..Wierd or what? I cant make any sense of what is going on in my body as it seems to do what it wants when it wants, i have been reassured by many others who have made the same comment. The Lyrica seems to be working really well in one way as i have no pain at all but side effects seem to be a slight problem. Does anyone else have similar experiences? And after some help from Flop (thank you Flop) i am thinking again about attending my appointment in London with the specialist next month. Hopefully i may get some answers. Thank you so much for your suggestions and support. Maggy x

Hi Abig thank you to all the moderators and all the people who are invoved in running this site. The support from everyone is so understanding and it is so comforting to know that you can talk to others who are dealing with the same problems. I also feel a lot better after reading some posts because it certainly lets you know there are people a lot worse off than yourself....not that i wish this on anyone, but it certainly stops you feling sorry for yourself. Thanks again to everyone because this forum has been a godsend to me. Maggy

Hi, I have just recieved my t-shirt that i ordered from this site, When i first saw them here i thought it was a wonderful idea to raise awareness and to support with raising money. I really do love th shirt and i want to thank all of you who have gone to the trouble of producing these. My problem is that i am having real trouble reading the information on the back. I find it very hard to distinguish the blue from the green writing. I am not complaining at all, i have shown other non potsy people who have said that it is ok. My quetion is....Has anybody else had trouble withreading it or is it just me? I have had problems in the past with visual disturbances, but before i go back to consultant to mention the problem i just wanted to check if it was a pots thing and other people also found it difficult to read or if its just another one of my many wierd symptoms. Thanks Maggy

Hi, I have had POTS and ANS problems for about a year and a half, i live in the U.K and still haven't seen the only specialist here ( i don't know if i am allowed to mention his name on the forum) I have recieved appointments but turned them down due to the fact that i came on this forum and did a search and the reports about peoples visits weren't very encouraging, if anyone has recieved positive experiences please could you let me know. Anyway sorry...... my consultant at the local hospital has studied POTS as a sideline he isn't a specialist in this field but he has tried really hard prescribing different meds to help controll symptoms. It has now come to a point where i am reading info on this forum and going to him to suggest new meds. I have now stopped my beta blockers and florinef because even on a high dose my blood pressure was either far too high one minute and low the next, my heart rate was still a 100 at rest . I have just this week been put on lyrica 200mg x 3 daily, and oxycontin slow release, to try and cope with some of the pain but i still need to try and start medication that will control my heart rate and blood pressure. I am also on diazapam and tramadol. Has anyvbody got any suggestions of what to try next?, have any of you managed really well on any certain type of medication that controlls the heart rate but does not affect the blood pressure.? Take care everyone ...............Maggy x

Hi willows It,s nice to hear your story although im sorry that its such a tough time for you at the moment, all i can say is that i am also battling along the same lines, i am also only able to sleep a couple of hours a night and the ants visit me regularly as well !!!! The good news for me and i hope it will be the same for you is that i have recently been suffering exactlyy the same problem with eating and speaking it was scary at the time because i do continue to deteriorate with new things happening to my body all the time. The good news that i was getting to was that it was only a temporary glitch and it lasted for about two or three weeks and then disappeared. I also struggle with the same battle of trying to stay out of my wheelchair but i have now come to the conclusion that my family and myself are better off if i use it, at least then i can spend quality time with them rather than taking ill and having to return home. I noticed you said you had angina attacks due to lack of oxyygen, i have not been diagnosed with angina at all but i have been prescribed oxyygen just to use for occasions like you descibed, i wondered if this would help you at all? I wish you all the best and hope you feel better soon. Take care. Maggy x .

Hi, I have seen this mentioned before and it really interested me as the symptoms i get after eating are very debilatating, i nearly always bloat up to looking nine months pregnant , the pain is excruciating the heart rate does exactly what it wants along with my blood pressure and sometimes especially with high carbs like bread and potatoes i even get to a point where i dont seem to be with it!!!!!!!!!! if you understand what i mean (an hour could have passed and i cant remember what has really been happening). This seems to have taken all the pleasure out of eating as this used to be my main hobbie. LOl . I Have been to see a dietician recently but unfortunatly there was not many helpful suggestions,.she was just astounded at the size of my belly and just kept repeating "what is it that you have in there?" I am now trying different types of food and keeping diaries in the hope i can pinpoint what it is, but like you i would appreciate any helpful suggestions so i can get back to eating my cream cakes and chocolate without all the pain and symptoms that go with it. Take care and i hope you get some answers soon x. Maggy

Hello again and thank you for the nice welcome, Just interested in your post Nolie you mentioned you had a 16 year old Daughter with POTS, my Daughter has just turned 16 and has just this week been told she has POTS although we have suspected it for a while. Have you been informed about it being genetic? Does anyone have any info on how common this is to be passed from mother to daughter? or sons???? Is there any specific Auto immune disease that any one knows of that can cause this? As for the neck and shoulder pain i also suffer from that, it can be so bad sometimes that i use the cool patches that are meant for headaches and plaster them all over my shoulders and neck, it ends up costing a fortune because you use so many.........but at least it brings temporary relief! . Once again it is so nice to be a member here and be able to get helpful tips and just know we are not alone. Take care. Maggy x

Hi everyone, I would like to introduce myself as i have been reading all your topics for over a year now but due to my lack of computer knowledge i have only just become a member so bear with me because i am a novice at this. My name is Maggy, i am 37, married with 4 teenage children, i was diagnosed with POTS,C.F.S and progressive Autonomic Neuropathy about 18 months ago. This forum was a lifesaver because it certainly helped me sit back and relax a little bit more about my illness, it just helped me to know that i was not going crazy and that i wasn't alone having these wierd things happening to my body. As you are all aware the illness seems to change your whole lifestyle, it has definatly been a big struggle getting through these last few months for the whole family, for the last year or so we feel like we are having to fight all the way just to get the basic help and support that everyone should be entitled to, it just seems twice as hard because there is so little known about the illness. There is one good thing about having this illness................................. at least you never get bored as there seems to be a new symptom popping up every other week or so!!!!!!!!!!!! On a more serious note i have got to the point where most of my life is spent in a wheelchair, lying down or in a hospital instead of doing the things that i want to do and i know that many of you out there have similar stories, but this forum has been the most helpful thing that has got me through some tough times and i feel proud to be part of it. Hope you are all keeping well and i hope to be in touch soon.