dancer65

I hope you can find someone who will work with you although I had diagnosis in 1987 after glandular fever I moved and since then GPs s tell me CFS doesn't exist . When I finally got referred to cardiologist specialising in syncope and POTS he discussed the association of cfs and pots and wrote to my GP surgery stating he thought I had cfs ! Sad as it is is it gave me some satisfaction lol Can you do any kind of exercise without symptoms ?

When I am having a bad postie day or pre syncope attack my normally low BP would spike not as high as yours but up to 175 /130 . My syncope nurse said this can happen she had a name for it but sorry I can't remember it darn this forgetful brain! However I don't get irregular hr but tachycardia , hope you find some answers

I do believe sugar,gluten additives preservities can be a problem for many with chronic illness . I tried a very strict diet under the guidence of a hebalist when my autoimmune diseases first started 30 years ago although it made me feel a little better it didnt stop the progress of my alopecia and I have continued to accumulate other health issues even though I carefully watch my diet. I think along with a genetic component it is a piece of the puzzle and have spent most of my life trying to figure this out I will also add I have spent a fortune in this battle , I just try my best to look after myself and enjoy the good days as my POTS allows!

I cant do much aerobic exercise without feeling like I have the flu , aching chills runny nose sore throat but I believe it is related to my cfs . I hope you find some answers it is so frustrating not to ba able to try to move forwards with training

So pleased for you ! Hope you ok today . Took me two years from the big crash to start being able to exercise again upright , still can't jump around or run maybe one day .....I am hopeful

Thanks for posting this like the others I found it very interesting

Hi and welcome !

Hi winters snow We moved 5 years ago and downsized to a much smaller house it was hard work getting rid of stuff but we bought a house that needed total renovation and we would be living in whilst we did the work ourselves, so space would be difficult and we put a lot of stuff into storage. When we took our belongings out of storage I realised how I hadn't missed so many things so I did anther huge purge, thank goodness I did most of this before my pots incapacitated me for 2 years ! Inside is now done lots of storage, clear surfaces in living areas apart from a couple of beloveded items, most of furniture was chosen to be built in or off the floor so I could vacume underneath it . I do not miss any of the stuff I threw out and cleaning is so easy ! My kitchen counter tops are clear which makes a huge difference to cleaning and meal prep , very different to my last place which had a lack of storage and permantly moving stuff out of the way! It's hard work but defiantly worth the effort in the long term .My family at last have given up trying to off load their unwanted items on me! The house feels restful and is my sanctuary Good luck with the project !

I get a pounding heart it may be with high hr or normal , I often have it when sitting or laying down in bed i make my own electrolyte drinks , plenty of ideas on the web, I make a big batch in the morning but I do add Himalayian salt as well and alternate it with water through out the day. And yes I live in the bathroom ! My chest pain has defiantly got better since being on midodrine no where near a severe as it use to be i hope you find things to help soon

Wishing everyone a happy christmas, I hope you all feel well enough to enjoy the holidays !

Yes I always get even higher hr when I have got a virus plus my legs and arms feel like lead this leads to even more fatigue . Hope you feel better soon !

I massage myself with geranium In almond oil for muscle and joint pain I find it really helps . ! I will often use lavender for relaxation and to help with sleep issues and for hubby who snores tee tree ! i also make my own body wash, mouth wash etc and household cleaners with them due to allergies, but rose oil gives me breathing problems. I have never tried them for brain fog though will have to look into that !

I am getting the sensation that ice cold water is pouring into my head! It only happens at night and wakes me , it’s not painful maybe a little uncomfortable and defiantly a very weird sensation ,scared me the first time it happened! I did think maybe it’s nerve related, any one else experience this. Thanks

Hi every one welcome !

I believe Julia Newton has a clinic in Newcastle. I am in U.K. Have you looked at The Stars website (search stars syncope) they have a list of Doctors dealing with POTS. They have a helpline too which I have used when I was trying to get a diagnoisis and they were really supportive and constructive I am sorry your daughter has bad headaches, I suffer with them a lot , over the counter painkillers sometimes works but I often have to take a prescription migraine tablet and lie down to get rid of it, I think mine are related to how fatigued I am along with low BP. I really hope you can figure the cause out for her. I hope this was a bit helpful !

If you had asked this in 2014 I would have said resting for 45 minutes up trying to do household chores or some floor exercise for 15 mins . I didn’t believe I would ever be able to work again especially teaching ballet Three years on I am back working full time during term time , I run a ballet school three afternoons a week and recently started a baking business so I can work around my symptoms / bad days. Each day is different for me routine wise but I write a plan ever Sunday for meals,shopping, must do list and exercise /quiet time ideas, helps me with the brain fog ! Also means I don’t have to think if I really need to delegate any job due to a bad day . Every morning after making hubbys lunch for him to take to work I sit with a coffee and decide around work committments, chores exercise and most importantly my rest time . Accepting that a rest time even if it’s most of the day is not time wasted it’s an investment in my health,

Don't have any ideas but just wanted to wish you all the best, hope you get the situation under contro! And she starts to improve really soon . Good luck

I finished florinef and went onto midodrine I started at 2.5 mg and built up to 7.5 mg x3 times a day , I'm allowed to take another dose if I have a partially long day which I do occasionally . The constant dizziness subsided within a week but other symptoms still remained , it took about 6 months for me to start to see a real difference. I think for me the midodrine gave me the ability to start doing things again, i could stand without falling over ! it has been a slow progress, as you know push too much and it's a day or even a few days on the sofa again !! I still have the Pre syncopal attacks but I think I know my signs well enough to avert them on most times, drinking a glass of ice cold water in one go really helps me as hot flush is my first warning sign. As for other symptoms they still are with me on a daily basis but just not so severe most days. I am back working and running my home but spend at least one day a week so fatigued I chill out on the sofa! My bp now is about 110/70 I still get days where it drops 90 / 50 usually a sign a need to rest and drink . I have also learnt that I actually need to get up for 15 mins and move about at least every hour or the sitting and resting actually makes my symptoms worse, it's a fine balancing act ! I drink water and electrolytes and try to pace mysel. It really took some time with the midodrine to stabilise my BP and on the whole it has worked well , the HR is a bit better but still goes from resting 65 to 120 without trying I hope the midodrine works for you ,

Hi Olayak i was on florinef for a year gained 14 pounds , stopped 16 months ago didn't loose any weight until last month but now it's going, dropped 10 pounds quite abruptly much to my pleasure ! Hang in there I know it's very frustrating when you eat well etc .

Hi I am from UK . I was referred by my GP in Wales for TTT in England as they buy in treatment from that area. It was a long wait of About 20 months as the consultant semi retired so only worked part time ! For another year I worked with GP to try to control symptoms but Eventually my GP to referre me to syncope clinic in London after Florinef didnt work for me and only cardiologist can prescribe certain treatments such as midodrine . Once I got referral it was about 2 months until I got appointment which I was pretty impressed with ! Since then treatment has improved my POTS and VVS Depending where you live there are POTS support groups I think most are in the main cities .

Hi so sorry things are so bad for you. my symptoms are very similar to yours. I take midodrine and have done for over a year, it helped my fainting and pre syncopal attacks which were daily now they are less frequent , but part of that is my understanding when to stop ! It has been a slow recovery with setbacks and I still have to be very cautious what I do especially on a good day but I am pretty functional and back teaching part time with an assistant ! I also have just started a business working from home . My functionality is no where near where it use to be but it has improved from being on the sofa all day! I still have all the same symptoms they are just less aggressive, less painful . I have changed my diet, infact my whole lifestyle. Ihave a number of auto immune diseases but I have chosen not to take immunosuppressants ( had one course many years ago ) for several reasons I hope the midodrine works for you!

Hi sorry to hear your daughter is having a hard time after op. Just wanted to share I had similar reaction after my hysterectomy, at that time I didn't know I had POTS but had been complaining of all the symptoms ! My BP was dangerously low so all pain Meds were stopped except for paracetamol that defiantly didn't hack it !! When they bed bathed me I went into shock, shaking, cold sweats, fainted etc. I also couldn't speak but in my head screaming for them to leave me alone , I seemed to have lost the ability to move my body , it all felt like my body and brain were not one ! On a positive note things did calm down after a few days and once I got home I was able to sleep more and potter around at my own pace when I felt well enough. i think these days they want to get you going really quick, some bodies are just not ready so soon after surgery hugs for her feeling better soon !

Ancy I am sorry to hear you are having a bad time again, my thoughts are with you and I hope you get some relief from the pain soon xxx

Hi Steph although hysterectomy is big op I was pleased I had it done , I was relieved not to be living on oramorph just to control the pain anymore . My advice to you would be get yourself as organised as you can before your op because you will feel exhausted for some time afterwards, I had wonderful friends and family who helped, don't overdo it either whilst you are recovering! I am sure the medical staff will take care of you knowing you have POTS, have a good chat with them so you know exactly what the plan is so you feel more at ease. Hope it all goes well, feel free to Pm before or after op if you have any questions x

glad you got to speak to someone I'm sure that makes you feel a little easier , hope it all settles down x