dancer65

Cmpe37. The nurse told me when I stand up I should think I of something else such as planning dinner , apparently that distracts the brain and makes emptying better ! Who knew !!

I was knicknamed looy at school as I was permantly visiting the Loo 🤣stress defiantly makes it worse . I feel lucky though I never had accident when fainting, thank goodness as I usually faint in the supermarket . 
 

just want to add it nice to have this discussion with you all , it’s always interesting to hear other people experiences. 

Thanks for all the replies. Pistol we talked at length about stress and the bladder, also the addrellin it was so lovely speaking to a nurse who really understood POTS , she totally understood the bad days have a huge effect on the urgency etc 

Cmpe37 I was told by my GP to stand up and move when I thought my bladder was empty then sit back down and try again and that way I empty properly. I did this on Tuesday when the nurse scanned my bladder and it showed I had emptied fully ! How sad I was rather pleased with myself 😀

cj 65 yeah it’s nice when things are positive I will enjoy it whilst it lasts ! 

Hi everyone hope you all having an ok day ! 
so a while back I posted about bladder issues , so happy Cauda  pseudo syndrome ruled out but I do have 3 bulging discs but no nerve damage , phew ! 
Today I saw the bladder nurse and she was very informed about POTS , I was impressed we live in very rural Wales . 
Conclusion of all tests is overactive bladder she believes  this is a combination of hormone issue due to age (how depressing ! ) and full hysterectomy also the POTS and low BP playing a part. 
Dr prescribed HRT suppositories which have really help with numbness and now got to work on not visiting bathroom every hour so I have agreed to have a go at CBT to help me 

we also just invested in an adjustable bed so now I sleep with head raised . Since having the new bed my bathroom visits have gone from 3 x a night to once , so nice not to have to keep getting up ! 
 

Yes I have ocular migraine diagnosed at eye hospital which I believe is classed as silent migraine . I loose my vision in one eye , or part of what I would  normally see in one eye . Usually lasts about half an hour if I rest . I also have migraines that lasts for days not found anything that really controls them every time . I take sumatriptan , co codomol or aspirin .

I believe ocular migraine is caused by constriction of blood vessels . 

Ah Pistol glad it’s not just me who hets that way ! All this adrenaline is a pain . I notice they now doing a study on POTS and adrenaline causing pain in muscles and joints it will completed next year , will be interesting to see the results 

I agree with Pistol. I would say it’s about accepting your limitations which is really hard and try not to get frustrated on those bad days. 
I would class my self as well functioning POTSIE although working leaves me struggling at weekends and evenings to do my ordinary chores and I have accepted I need to rest. I have symptoms daily but they are mostly manageable. I make lists of what needs to be done that day (helps me remember due to brain fog ) and a list of things I would like to achieve that week , often that lists stays the same but hey there’s always another day !

I have learnt time to look after myself is essential that way I do get to do some things I enjoy . 
 

Bad days can leave me feeling very down, irritable and not nice to be around ! Taking myself off to rest and distracting myself reading, meditating , soak in a bath seems to work for me and a  couple of hours later I’m my happy self again ! I am beginning to wonder if that down feeling is due to a chemical process rather than just being fed up of being ill . 

Yes I defiantly have mood swings on bad days. I often feel during a crash,  I can’t do this anymore and feel so down. I usually isolate myself as every sound seems to be amplified everything and everyone irritates me! If I lie quietly in a dark room and relax,  most of the time  I feel better in a couple of hours . I think it’s caused by sensory overload , low BP and addrellin for me 
 

Hi Pistol

Thanks for sharing the article it does make sense . I wasn’t aware of the oxygen level drop . 
Yes barometric pressure really affects me and temperature changes too. We had weeks of cold wet weather about 9 degrees , that changed to 21 this weekend and it just wiped me out , BP really low even with midodrine . Chugging water by the litre ! 

Hi 

I have alopecia . To answer your question yes it may have been the shot that triggered it, alopecia can often be triggered by emotional or physical stress. Most people recover without treatment and never have a repeat episode . Have you been offered any treatments or have they advised you to wait and see what happens ? 
there are many treatments available to encourage regrow the but there is no know cure . The National alopecia Areata Foundation is a really good source of reference I suggest you visit their website . 
 
I know it’s hard not to but try not to stress . Like POTS take care of yourself eat as healthy as possible and rest . 
 I have had alopecia since I was 12 now 56 , my form of alopecia is rare and is hereditary because of this I am pretty well informed so feel free to ask any questions or just to have a vent . 
big hugs xx

I agree don’t feel guilty posting just because you aren’t as bad as some other members . Over the last few years I have improved enormously and would class myself as highly functional although my VVS and POTS affects me in some way every day . 
I have found squatting  whilst clasping my hand in front of my chest and squeezing my chest muscles to help when I feel I’m going to faint , if that doesn’t work I get down on the floor ASAP !

I concentrate on strength training of back , abdominals and legs muscles as they are important for skeletal pumping of the blood . I notice a difference if I am I’ll and don’t do them for a few days . 

Sorry you are in so much pain .

I have recently had swelling and pain in jaw bone but doesn’t sound anything like what you have got . Dr gave me antibiotics which worked . 
sending lots of sympathy and hugs , hope the meds work 🤞

Hi 

sorry to hear you so unwell and struggling to work . My advice to you would be to keep a dairy of symptoms whilst both resting and during activity, BP and Hr readings to take with you , I found this really helpful,  especially with the brain fog as my mind would go blank and I use to loose the ability to make comprehensive conversation during consultations . I always had my hubby with me to support me , but of course with COVID that may not be allowed. 
A poor mans TTT can also help give you a picture of what’s going on . 
I wish you all the best , there is hope many of us do improve with lifestyle changes , finding the right meds but it takes time and requires patience . This forum is great for support. I learnt more here on self help than anywhere else and five years on I’m still learning and improving . 
Take care . 

Not sure if it’s the same thing but I use to get very nervous after summer break opening my dance school . I would stress about everything from admin to teaching even though I have been teaching for 40 years ! Soon as I got to studio I felt fine and every year wondered why I was full of anticipation. 
Hope it all goes well for you xx

Sorry you haven’t found any thing that helps you , must e awful putting up with problems since you were a child 

Thanks Pistol , been rather a worrying morning ! The good news I haven’t loss pelvic sensation at the moment , if I do then it is classed as a emergency 24 hours to have surgery or incontinence is not reversible . It is caused by herniated disc 

Pistol I just wanted to thank you for pushing me to go to Dr . I don’t have urine infection but due to loss of sensation I have to have MRI to rule out Cauda equine syndrome . If the loss of sensation progresses any more then I will have to go immediately to hospital . Trying to stay positive that this is more a localised problem than being caused by my spine . 🤞🤞🤞

Again thank you I really was ignoring this problem I was just putting it down to POTS ! 

Just sending you best wishes and I hope you can get some help 💗

Thanks pistol been fine today doesn’t seem to have made my pots any worse like the flu jab did . Only had sore arm so very pleased ! 
 

Yes I had this when I was at my worst , it’s horrible feeling . I am pleased to say as I have got my insomnia under some control it has gone away . 
I hope this improves for you. 

I got my vaccine today sore arm very quickly and felt a bit odd a couple of hours after it just for a short time . Did feel quite dehydrated this evening but feeling fine now. Will see how I feel tomorrow . 
just thought I’d share ! 

Will do 😀

Pistol thanks for your help ! I will look into Prelief. Yes I’m 56 soon yikes it’s scary!!! 

Hi pistol 

thanks for replying . I shouldn’t complain really I have been doing really well since lockdown has forced me not to work ! 
I can relate to your symptoms I have always been teased for  the amount of times I need the bathroom since childhood . I was told after my hysterectomy I have a child size bladder so that doesn’t help . 
I don’t get any pain it’s just a weird feeling “out of control” and often return immediately to the bathroom as I feel I need to go again !! It’s also very intermittent. 
My last  urine test was about 10 years ago when I was going to be tried on an auto immune suppressant for my alopecia , as the loss of hair in my ears nose and eyelashes is affecting my hearing and allergies. I was declined due to blood in my urine and it was never followed up , so thats an interesting point for me . 
Thanks so much for your input I am going to keep a dairy on this and call Dr if it continues . 
Hope your family are managing to stay stafe and well 
xx

Yes I get headaches 

I often get the urgent need to pee when my bladder is not full but recently I have been experiencing numbness half way through emptying my bladder , so much so I can’t feel when I have finished . This is new symptom for me could it be ralated to POTS?

thanks for any input