dancer65

No I put on loads of weight a stone, taken me ages to get it off still working on it ! I think meds and the inability to do aerobic exercise had an effect . I also think dysautnomia has an effect on metabolism. 

Thanks for info, dissappinted it won't alter my wrists are 5 and half so it will be too big ,  what a shame ! 

Looks lovely ! I love turquoise . 

Would like to know how small can you make the bangle I have tiny wrists ? 

Last time I had a filling I had injection without epinephrine , didn't feel a thing but it took a long time to wear off ! 

Hope all goes well with extration x

Thanks kelleyhome for your reply 

Thanks to all of you hopefully will find something that helps , keep well everyone ! 

Yes I take magnesium and coQ10 but B 12 . I had hysterectomy 6 years ago due to andemiosis cysts and fibroids, migraines are more frequent than before. Spent Friday and Saturday lying down again , just frustrating that I can't find something to control the pain.

I will have a try with the riboflavin anything is worth a go !

What a nice day for you , hope it continues ! 

I agree ! 

I am on midodine 7.5 X3 a day and if i have a late working evening i can add another dose , took me a few months to get up to that dose but it has helped stabilise my BP , use be 60s over 40s now it at 110 70  most of the time . Took about a year before I started to see improvements across the board in symptons but I now achieving 4 and half days a week working. I have also made huge lifestyle changes which I'm sure helps. 

I never had scalp tingling only goosebumps the first week , 

My cardiologist said he thought my hypermobility was contributing to my POTS along with my autoimmune issues and CFS /ME . 

All I have read and heard says EDS often goes with POTS . In my opinion there seems to a lot if patients with both ! 

I use to have that uncomfortable feeling every time I sat down or in bed so it disturbed  my sleep. It would start off with a surging feeling and progress from there . The only way I could stop it would be to walk about (not easy when you are dizzy)and as soon as I sat or  lay down it would be back 

As my symptons have improved I have this less, maybe one a week these days  but it is always when I am really tired. A warm soak in Epsom salts help me but I understand that can exasperated symptons for many potsies,  I am one of the lucky ones who doesn't have too many problems in the shower or bath.

My Dr asked me if it was like restless leg syndrome but all over , I thought that described my sympton well 

Hope you can find some thing that helps it is very annoying when you need to rest 

Thanks for the info. Four years ago I felt so overwhelmed with it all I decided to tackle one sympton at a time, migraine is my most bothersome at the moment . This approach has helped me because as I concentrate on one thing I realise another not so bothersome sympton has improved.

Just feel lucky I am slowly getting my life back, mind you its hard work looking after yourself ! 

I find my fitbit really helpful as often  don't feel my high heart rates even when I'm in cardio mode! It has really helped me control the fatigue by watching how my body is reacting to different tasks , which as we know changes daily.  I have noticed  though if you have a quick spike in hr fit bit doesn't always show it but it is a good general guide to what's going on .I hope it helps you figure out her vertigo.

I find all the other info on it helps too especially the sleep and fitness logs 

As always wishing you all the best x

Thanks I have made a note of them , just need to find something that’s works either to prevent or get rid of them ! 

Pistol I read your post the other night to my hubby he reaction was one of yep sounds familiar laughing ! Thank goodness they have a sense of humour and patience !

on a more serious note the high addrellin does make us seem  neurotic and that is the one thing outsiders don’t understand even if you try to explain when you have calmed down ! 

I think we just are determined not to let it rule our life and have the belief we can just push a bit more only to find we are wrong again !! It comforting to know I’m not the only one who misjudges the situation maybe one we will master it . 

Thanks for posting very interesting

Pistol I totally relate to the pushing through when really we know we shouldn't ! I smiled when you mentioned your husbands reactions it sounds  just like mine, they know us so well ! Whilst cooking my hubby often tells me to put the knife down and go and sit down before I hurt myself he can see I'm not co ordinated

Before I pass out I always get really hot, in seconds i am  dripping with sweat,  feel panicky ,aggitated and confused  so I lay down until someone can get me ice for my neck and   i chug cold water which  helps bring my temperature down . I have learnt the hard way take immediate action or pass out which often results in injury , as my Dr says doesn't matter where you are get on the ground ! 

Hi everyone 

Thanks so much for your imput really helpful to hear of your experiences .

States of amitriptyline was mentioned at the appointment nice to know it doesn't cause you any side effects.

Dizzy girls I have never heard of the injection will be looking that up . Hope things are settling for your girls. Has the injection helped or is it too early to tell ?

P8d we seem to have very similar symptons I have noticed ! I will look in to topomax, my BP can still run low even om midodrine so I don't think they would give me BB , we never seem to be easy to treat ! 

Thanks again everyone 

Does anyone take medication to help prevent migraines?

I had appointment with nurologist on Monday with the hope we could find a painkiller that really worked as I don't seem to respond to a number of  migraine meds I have tried . He suggested a preventive med and would be getting in touch with my GP . I have done some reading and I think I may be contraindicated to a number of them due to low BP .Also a bit concerned as some seem to be addictive and weight gain seems to be a problem , so I want to be well informed before GP visit. 

Your experiences would be greatly appreciated 

Thanks for reading hope everyone is doing ok x

Thank you for posting this very interesting to me 

Nice ! Great feeling when someone notices all the hard work you have put in and compliments you . Great achievement well done 👍 

Yes I had extreme changes in BP and HR resulting in me fainting, a few times hurting myself quite badly but it could have been worse !  It has improved on midrodine but  I can still have huge swings especially when I am getting ill . 

Glad it was a positive experience and you managed the journey ok . Interesting they treat if antibodies are positive . I have a few autoimmune diseases definatly genetic . Didn't know NHS were using plasmapheresus for Pots ! 

Good luck with your health board I hope you get what you need 

Thanks for that information I will look into who provides this service near me . With low winter sun and dark nights on the way I would like to find something that stops the glare from oncoming traffic 

Again thanks 

Good luck tomorrow I hope it goes well,  do let us know how you get on .

I see cardiologist in London who runs a  syncope unit, the syncope  nurses are really supportive and always return my calls on the same day if I am in need of advice .

When I was really bad I was always visiting the bathroom which meant I was up about every half hour , often I would crawl on my hands and knees if I was on my own incase I fainted  . After reading about TTT training to inrease OI I started to use the bathroom visits as OI training and increase both moving and standing times each day but always with something near to grab onto if i needd it . Over time I then would add in one small chore, it may have taken me a whole day to achieve it but it made me feel useful again. It was slow progress and some days extremely challenging  I started to believed I would never be able to work full time again especially as I am in my fifties , but 4 years on i am teaching all my classes and my latest progress is not having an  assistant  to demonstrate for me and  i am coping ok ! 

It was and is still  hard and I had to try and learn what was too much and even now every day is a challenge one way or another

I also never stopped exercising even at my worst even it was only mobility core strengthening or stretching all done by floor work, even some static exercise on the sofa ! 

I hope you can find a routine that helps you improve x