dancer65

Hi everyone ?

Stress emotional or physical really affects me. I too can never predict how long the Downward turn will last . I really hope you feel better soon it's rotten when you feel unwell again

Thanks gertie for your insight !

Hi everyone I am really not good with dentists after some really bad experiences over the last 15 years , my legs tremble even sat in the waiting room and I have to fight hard not to leave the building ! I have finally found a dentist that I think is ok I have only seen him for a check up so far, he asked loads of questions about POTS and was asking if I was ok during the check up . I had to see his colleague for the emergency appointment last week after excuriating pain in my face and jaw. Now on two antibiotics as I have an abscess under my back molar which will have to be extracted as it is almost all filling, my roots are twisted so apparently it will take longer to take out yikes! Also got to have a root filling on its neighbour, I hate my teeth being messed about with they are so sensitive . Not sure if I should be asking for an epi free local ? I have never had a bad reaction before being diagnoised They have always had a problem numbing my mouth, even for a filling I have to have two injections . I know this is ridiculous but I am really stressed out about it i have had numerous surgeries and not nervous but this tooth extraction terrifies me ! Thank you in advance

Hi everyone welcome!

Hi everyone welcome !

Hi everyone As the awareness month draws to a close I would like to thank all those involved for working so hard all year around to raise awareness . I also wish to thank everyone here for their support and sharing their experiences which offer comfort and hope I joined this site two years ago feeling desperate confused hopeless and alone . Whist I have a very supportive family the changes in life can be disturbing and challenging for them as well . The knowledge shared here has helped both myself and my family cope. There is no doubt that your shared experiences have helped me to accept adapt to my new life and not to give in until I found medical professions who found a treatment plan that helps My thanks to everyone and wishing you all better health in the future!

Hi sorry you are feeling unwell . I hope you can get some answers to your problems. My usual experience is that it takes me months to recover from viruses and I just seem to catch everything going around ! At the beginning of the month I was having pots attacks daily felt like I was crashing even the midodrine was not helping the BP drppoing out and then spots appeared ughh I had contracted chicken pox again! Very grateful it wasn't shingles! Very strangely I recovered quicker than usual to what is my new normal and in fact if anything I feel marginally better than I did before chicken pox .the most noticeable improvement is the brain fog I don't seem to be struggling for words half as much and just small improvement in symptons all around My syncope nurse who has been so supportive has warned me this may not continue and maybe a reaction to being ill however I remain hopeful and cautiously positive and enjoying the more functional brain for the time being and hopefully in the future. seems to me there is no way to know how our bodies will react but it nice to know occasionally it can be a positive one ! Best wishes to you

Thanks Katy !

Just finished reading it, thank you inspiring !

Thank you for sharing your sons experience, interesting it has helped with chronic pain . Going to contact my dr and see if he will prescribe thanks !

Hi everyone ! Not been here for a while i hope life is bearable or even getting better for everyone. Been reading past posts on LDN something I think may be worth a shot at trying for my CFS. alopecia psorisis etc read how many patients have found it helpful for the auto immune problems. Just wondered if it helped anyone here in any way and if it helped pots symptons at all thank you best wishes to all

I would love to have been there I'm sure it was amazing sight! Hope you enjoyed the evening Sarah

Sorry to hear your daughter is having such a difficult time. I taught a girl who had neck dystonia her muscles were so tight her neck was held to one side all the time. She was treated with Botox and wore a body brace which did improve it and relieved some of the discomfort, if I remember correctly she had injections about every six months hope you can find some answers

Hi kaitlin yes it is so good to be more functional ! Katy that's such good news I hope you continue to improve even more as you Increase the dose

Thanks I will try that sounds good ? Sorry for the late reply !

Hi sorry to hear you daughter having a hard time . I stopped florinef immediately as instructed and started midodrine . I completely crashed and fainting with all the usual postie problems . They doubled my dose the first week to 5 x3 times a day that made a difference but it took a couple of weeks to really see improvement . Last week they put me 7.5 mg and I am really doing well . No syncope attacks for a whole week and I am functioning pretty well in all areas of life as long as I pace myself! My BP during the day is normal still drops a bit after the dose wears off in the late evening but not as low as it use to be it has taken me about 8 weeks to get to this stage of improvement with the midodrine. I am still having symptons but nothing that I can't manage handle i really hope this works for your daughter I just wanted to share as in the beginning of changing meds I thought I had done the wrong thing

Hi i am sorry you had such an awful weekend. Personally I would write to you bfm thanking her for having you to stay and then I would go on to to say you appreciate her concern for your health and thought that as she had so many questions about your condition that this article would help to clarify your illness as when you are not well it is hard for you to explain . I would include a medical article explanating pots and that you have very experienced dr who is supporting your needs. II would find articles and copy and paste to include your symptons and to make it a short read . I think letters are a good way to get your point across as you can take your time to construct it so it comes over in the right tone, personally when I feel rough I can't communicate verbally so well! I would really try to win her over ( I know it took me a few years to win my mother in law over but now we get along really well ) it will be important to you bf that you get along with his mother , boys are usually very protective of them . mothers are looking out for their sons and it's hard to convince them you are good enough! I would also play on the fact that your bf is supportive and caring and some how praise her for his upbringing that she must be proud of him etc I may just add I am mother of two grown up sons one with girlfriend the other with wife and baby. theses realationships can be really difficult sometimes and take up energy that we don't have but i know my husband appreciates the effort I have put into making the relationship between his mother and myself good, she turned out to be a rock when I was really ill so sometimes people can suprised you more than pleasantly! I have one sons girlfriend who is so thoughtful sends flowers rings me to chat etc it makes for a very happy house when we visit each other. i wish you luck and hope that others can give suggestions

Karen voight does some excellent workouts with explanations on technique and a variety of adaptations to suit your level she was exercise instructor of the year on numerous occasion and is well thought of in the industry

I stick to a routine going to bed and getting up at the same time in the summer months I find this easy but in the winter getting up can be a real challenge ! I also try to eat my meals at the same time each day it helps keep the ibs at bay

Hi When I was on 2.5 mg three times a day it didn't push up my BP that much and I still had high hr I have seen a small improvement on 5 mg x3 across all my symptons ( but it took a couple of weeks for my body to Adjust) BP is better and my HR on the whole doesn't get over 120 which I can cope with. They have just raised my dose again this week as I am still having syncope attacks in the evenings I think I would call the dr to discuss if that continues over the next few days

Welcome everyone !

I had an ACHT test to rule out addisons it came back normal that's when my GP suggested POTS

Latte girl I do get a adrenaline reaction as Matt says, I tend to have the flight response and feel the need to leave the room or building I am in . My emotions are all over the place too I often have tears when having an episode or I can be really panicky my husband is use to this now and helps me to calm down.

I have POTS and vasovagal syncope I always have symptons of varying degree even with meds and lifestyle changes. However I am beginning to get to grips when I can push through and when it is time to stop and rest. If I wake up with low BP 60/ 40 's I know to be careful and I really need to pace myself. I also have a surging feeling through my body before I start to feel very hot that's my warning sign to lie down or I will faint