Maggy

I also have hyper pots and my bp spikes to 230/120, but I also get times when it drops to 80/60 so I'm not able to take any meds to lower bp. Have you found any meds that help control the spikes in bp ?

Hi, I have been on Lyrica for about ten months now the side effects when i first started were bad, shaking anxiety etc, but soon settled. The relief from pain was unbelievable, it was a lifesaver. I have put on over 40 pounds in weight which i hate, but even if i got obese i dont think i could come off the meds because of the benifits that it gives. Ihave heard from many people that it is a nightmare drug to come off of, i hope you benifit from taking it. Take care.

Hi carly I take Beta Blockers because my heart rate goes way out of control many times a day, the BB do work but like you say they can also lower Blood pressure . When i was first diagnosed my main problems were increased heart rate and passing out frequently due to low BP on standing which got a lot worse when i started on Beta Blockers. Not everyone with POTS has problems with blood pressure so maybe these people arn't too symptomatic with just a slight lowering of blood pressure caused by beta blockers ? I also have to take Fludrocortisone to raise blood pressure and i personally find trying to get the combination right is very hard. If you are not too symptomatic with your slightly lower BP caused by BB then i would personally advise against doing anything to increase it. I hope this helps a bit. Take care .

Happy Birthday Ernie, It was lovely to come on line and read a positive story in that you have come a long way in the last 7 years, well done for all the hard work you have put in, not only for your self but for everyone else. Thank you.

I have been on Lyrica for about six months now and for me it is a lifesaver, i would not manage without it. Lyrica started to work for me straight away, i was transferred directly from Gabapentin to 600 mg a day of Lyrica and for the first time ever it controlled my burning sensation and my sensation that was like lots of pins were sticking in me. If i am late taking a dose i definatly know about it. The only side effect i have found is the weight gain.( 2 stone in four months), this is the only med i have changed and my eating and exercise habits have not changed at all, so the Lyrica is the nly thing i can put it down to.

Hi For the last ten years i worked full time at my own Pre-school, teaching children aged 2-5yrs,I came down with full blown symptoms two years ago iand found it so difficult to spend time with the children as i was too ill, so i decided to stay at home and catch up on the endless paperwork. At christmas this year after a decision that was so hard to make, i had to close my business and give up working in a career that i loved, i found that staying at home doing paper work was not the reason i opened my Pre-school, i wanted to be with the children. This career is the type of work that you have to give a 100% or it's not fair on the children. I know i made the right decision as my health was declining rapidly, i would say to anyone to keep working (or training ) in the career that you enjoy, it is a lot easier even when your not feeling well, to go to work in the morning in a job that you love rather than something that has no value. I do find it difficult to adjust to staying at home but i feel that ill most days that i know i would not be able to do justice to any job that i took on. Good luck to all who are able to continue in their chosen career, i know it can't be easy for you especially when symptoms flair up, but i'm sure you will find it worth it. Maggy.

Thank you for all your suggestions, i hadn,t really thought of migrane because i have never suffered from them so far, but i will mention it to my consultant who i see later to day and maybe even book an appointment at the opticians just to check. I have just had another MRI scan of the head recently and i have noticed that they have written in the results that small lesions were found but it noted inflammatory sinus disease, does this ring a bell with anyone? has anyone heard of this ? and does this mean a straight forward sinus infection? i have tried researching it but it keeps bringing up links for crohns or IBS , just interested to find out if anyone has had anything similar? Thanks again and take care. Maggy.

Hi , I have done a search but can't find any info on this,i was wondering if anyone else has this problem at all or have any suggestions as what it may be. For a few weeks now i have been getting sharp pains behind one eye,there is also a heavy pressure pain inside my head and it feels like it will explode,it also feels like it is too heavy for my neck. My eye feels really aggrevated and my vision keeps going very blury like there is a piece of cling film in front of it. I have had my eye checked by the local G.P who says i have no infection or anything in it and he asked the question if it could be connected to POTS. I have not started any new meds and i have just finished another course of cipro for a U.T.I.. Thanks for any sugestions Maggy

Hi Morgan As said by others well done for bringing this post to the surface, it takes a lot of courage and between youself and melissa you could keep most people entertained for life with your funny sense of humour coming through in to your writing on a very sensitive subject, but as said before if you cant laugh about things you will cry. I am sorry you all are dealing with this i have also been like this for the last 8 months or so but i have a permenent catheter for urine retention with a flip valve, so again i can also just flood the place if i forget to go. The problem is that i have not had for a while, any sensation of the need to pass urine and so leak quite often. Solutions are 1; Have a sense of humour, which you definately all have, it does cheer me up to read your posts (sorry,doesn't sound very sympathetic) 2. Rule out infection (already done) 3. Try medication ? Dessmopressin? i'm sure you already have. 4. Like Melissa has pointed out already there are plenty of pads, but it was something i did not want to use until my last resort. OR 5. Encourage your dog to sleep on your bed between you and your partner and blame it on the Dog . Sorry i have nothing encouraging to add other than you are coping really well considering the lack of support you get from the medical field, you must be a very strong person , keep it up. Take care Maggy.

Hi, I went down to London for a week of testing at the end of Feb this year, i had exactly the same tests that Flop has listed although i did have MRI scan and a psychological evaluation as well. I have not recieved any formal paperwork either, other than the initial discharge letter that stated POTS has been confirmed along with urinary dysfunction. We are just waiting to see what else comes up. The week was full of continous tests and the problem came when certain test results shown further tests were needed, this resulted in the consultants wanting me to have further tests that they had not already booked me in for. Because of the distance to travel they have agreed i can have the tests locally and get the results sent up there. The Hospital is very nice, and the one and only time i got to meet Prof Mathias was for 5 mins on the second day there, he does seem very nice though and the team of dr's working under him are also nice. I hope all goes well for you. Have you got far to travel? where abouts are you from?

Hi Tearose, I had to respond just to let you know that i do havea husband and four teenage children, we have been together for twenty years and yes this was the hardest part for me to deal with, athough my husband could not have been any more supportive if he had tried. As you can probably imagine that made me cry about things all the more because it seems harder for me to deal with anything when somebody is being nice. I still feel that the incontinence makes me less of a woman and yes it has come in the way of our close time together, but that is down to me. I agree with what you are saying it is very hard to deal with, the only thing i will say is you do learn to accept it and work around it, it does take time and even now there are many days especially when I get low that it is still very hard to deal with. I know in time you will focus on all the good things that you do have in life and that will be enough to overide the fact that you are struggling with other problems. I hope you feel better soon and feel free to PM me if you want a chat. Take care. Maggy.

Hi, Thank you to both sunfish and Flop, I have been under urologists on and off for twenty years i am already using a long term catheter for urine retention for over a year now. The samples of urine that have been sent off regularly over the past four months have shown infection, the oral antibiotics it is... (cant think of the word) shall i say that i need to take to clear it, have been taken regularly but the infection has not improved. I have been on two courses of IV antbiotics within the last four months and the most recent problem has been that they can no longer canulate to continue IV because the veins continue to be very weak and collapse (this is a new thing that has started to happen). I have now ran out of veins and it was soooo annoying because for the first time in ages i was just starting to feel the symptoms of the uti infection going and we have had to stop. I am due to see a different urologist today in the hope that he can find another route to go down as the most recent sample has shown the infection to still be present and the symptoms have started to flare up again. My POTS consultant had previously mentioned that i will always have a low grade infection, but no explanation of why that it so. I think i am desperate as i feel that options are slowly running out, we seem to get one part of our bodies under some sort of control and then we either form new allergies or something new seems to happen that stops treatment. Thanks again both for your support i thought i better explain my problem a little clearer. .... Maggy

Hi all, I have ben told that after suffering the past twenty years or so with frequent uti's and for most of the twenty years being on oral antibiotics of many kinds i am now immune to most of them and i was told i would always have a low grade infection in my urinary tract and my distended stomach. Do any of you suffer from frequent infections that seem hard to clear? Have any of you found a solution to the problem? I am struggling because the low grade infection cannot be kept under control by oral antibiotics as i am immune to them and so it keeps flaring up in to a full blown infection that is very symptomatic. Any sugestions as to what the next move is? Dealing with the every day problems if POTS and Dysautonomia are bad enough with out trying to deal with this on top. Any tips or suggestions would be a great help. Thanks ..... Maggy.

Hi, I have also been taking the pink round Fludrocortisone which did not have to be stored in the fridge, My daughter has just been prescribed exactly the same prescription as myself and yes hers are white tablets to be stored in the fridge. I spoke to the pharmacy who said it would be fine to take the days dosage out of the fridge to be carried round in her daily container as long as it was not kept in extreme heat. The reason for the change is the white brand is cheaper. Lets just hope it is as effective. Im sure we shall soon find out . Maggy.

Hi Tearose, I have just written one long reply , went to send it and the computer crashed but here goes again. I just wanted to let you know that i understand what you are going through. I am 37 and for the last year i have also been suffering from both types of incontinence. I was offered a full time carer for domestic,personal and social care which i accepted gladly but i still struggle to ask for help with personal care, i would rather struggle, Pride just seems to get in the way. One way of trying to come to terms with this happening was to think of many other people who are a lot worse than me and many of those can not choose to do their care themselves at all ,they don't have a choice. The second way was to choose good protection so that if or when the inevitable happened at least it was not going to go through to my outer garments and at least it gave me a bit more confidence that every body else in the world didn't have to know about this. It also enables me to be able to still go out on the odd days i am well enough and my carer can take me. It is easier said than done to look on the positive side, but from reading your previous posts i feel you are a very strong person deep down, i am sure after a bit of time you will pick yourself up again and fight back to enjoy the many things you are capable of enjoying. Hope you feel a bit better soon, take care...Maggy.

Hi Morgan, It probably bugs you so much because you know what your talking about . I have read many of your posts and you have been through an awful lot. You would have thought by now that because you are so experienced in dealing with many of your complaints yourself and you dont cry out for help every five minutes, that when you do say there is a problem , you would have thought someone might take you seriously and try and find out. I hate to say this but i think you have already worked out the reason nobody will do anything it seems your illness scares professionals and it easier for them to ignore you and fob you off than deal with things they are not really sure about, i know i have found this to be the case with myself. I am so sorry your having to deal with things AGAIN by yourself. You are very brave and you must continue to believe in yourself. You do know best and all you can do is continue to express your concerns to people and hope there is someone out there who will be nterested in finding out what the real problem is. Good luckand dont let them keep putting you down, im sure you wont as you seem a very strong character from what i have read about you in the past. All the best and hope you feel better soon. Maggy

Hi all, Best wishes to all of you for a healthy new year. I was hoping that someone may be able to give me a bit of guidance on a decision i need to make. I have been really poorly over the holidays and have had i.v antibiotics for the second time in four months to try and rid a stubborn u.t.i that will not go away. Over the last few months i have developed more allergies than you could imagine. Every time a canula has been inserted, my veins have been collapsing within seconds, E.C.P's and consultants and nurses are all needing many attempts to find a decent vein.if they do suceed then the canula has been lasting up to two days and then i seem to get reaction so they have to remove it and start again, the problem is i am now on my last decent vein and the body is reacting so it will be removed tomorrow. I have now got to decide if its worth taking the risk of having central line or Hickman line put in, but who is to say my body wont react to that after a few days? My treatment will be ongoing throughout the year and i am struggling to find an alternative way of continuing treatment. My questions are why do our veins start to collapse when previously have been healthy? Why do we develop so many reactions to products we have previously tolerated? Can anyody think of an alternative solution to going into theatre to have a line put in? Sorry for so many different questions but i need to decide fast as to a long term decision . Thanks for any advice . Take care ......................... Maggy.

Hi Thanks Karen i am not under a neurologist at the minute as six months ago he decided that my condition POTS and Progressive Autonomic Neuropathy were to complex for him to deal with, as he had never seen any cases before. I think that i will get my G.P to refer me to another Neurologist and in the meantime i will get my anti siezure Meds ( Lyrica) increased if there is any possibility of that. I have also heard that there can come a time where it can dissapear for a while, i am desperatly waiting for that day. Thanks again for your input. Maggy

Hi I have been suffering really bad with sudden sharp stabbing and burning pains through the left side of my face going in to my left temple. The condition is called Trigeminal Neuralgia, the cause is from a blood vessel pressing on the Trigeminal nerve in the head as it exits the brainstem. Sometimes it can be associated with disorders characterized by damage to the myelin sheath that covers certain nerves. The pain is the worst i have ever suffered, i do cope with pain on a daily basis anyway and still continue to live the best life i can i also have four children and would say this new pain is worse than chilbirth of all four children put together. Combined with the fact that i already take full doses of pain meds such as Lyyrica, Tramadol, Co-Codamol and Naproxen, this may give you some indication of the pain i am struggling to cope with. The condition is one that people with peripheral nerve damage may suffer from so i was hoping in a way that someone out there is also coping with it ( although i would not wish it on any of you) but please any help or tips on coping would really be appreciated . Thank you Maggy.

Hi I am from the u.k and was put on Ivabradine about 8 months ago, the drug does do the job that most pots patients want and that is to lower the heart rate without lowering the blood pressure. I was doing really well on it to start with but after about three weeks the visual disturbances were so bad that i struggled to continue with every day life. I was finding night times were the worst when the light was starting to dim, it got so bad that i was seeing two or three of everything all the time and if i turned my head the original vision would follow me around the room. I did continue to take the meds because it was doing such a good job of reducing my heartrate and i was still able to stand without my blood pressure dropping, but after a few more weeks the visual disturbances were so bad even in the day time it was unsafe to continue taking the Ivabradine. Everyone reacts different so it is always worth trying it, but it certainly is a new drug for this condition and my consultant said it was the first time he had heard that it was being used as a trial for pots. Good luck to anyone else who can take it. Maggy x

Hi Flying will obviously affect us all in different ways,but my experience on a recent two hour trip was quite a struggle. I found take off and landing caused problems of extremely fast heart rate ( may have to do with anxiety?), blood pressure dropped very low 60/40, this caused me to pass out on the way up and nearly pass out on the way down, i think the difference was that i loaded with high amounts of fluid on the journey back. Once in the air when my body had regulated, it took about twenty minutes to do so, i found that pressure was building in my torso and my abdomen swelled like a packet of crisps would have done, the pain was unbearable. The advice would be to drink lots and lots of fluid, wear support flight socks to try and stop blood pooling and keep legs moving at all times. This was just my experience of flying and again i must stress we all react different, i have read previous posts where people have flown and had no problems at all. Safe flying and i hope all goes well Maggy

Sorry Rachel must of posted at the same time. did not mean to be rude by ignoring you, What is Facebook? I think i may suggest that my daughter introduce herself here like you have suggested at least i know that she will get the excellent and caring support from all the people here on this forum. Thanks Maggy

Thanks for the suggetion it was worth a try. I have just tried to register and have found that you have to be in America to be a member. If anyone has any further suggetions i would be grateful. I live in the united kingdom. I have noticed that we British are becoming more common on this website and i was wondering if any british people were aware of any support groups based in the U.K? If not is there any way in which one can be started? This forum here has been wonderful for the support that we need to continue our daily struggle but it would also be nice to meet face to face with people who also have the same condition. Thanks again Maggy

Thank you, I cant say for certain that this is the one ( memory not too good!!!) but it certainly looks promising. I will try and register and check it out. Thanks again . Maggy

Hi everyone, I remember when i first started reading posts over a year ago that somebody mentioned there was a website for young adults/children with POTS / Dysautonomia, i have tried researching old posts on this forum and surfing the net itself but not come up with anything. My daughter is 16 and has been diagnosed with pots lt has been established that its genetic, she is struggling to deal with accepting her condition and accept that she has the same condition as myself even if it is to a lesser degree. I think it may help if she is able to communicate with people her own age . If anyone is aware of any groups/ forums or support of any kind i would appreciate any input so that i can check them out . Thanks for your help. Maggy