dancer65

Yes my HR increases and I usually get low BP with spikes.

I had restless leg syndrome every night when my POTS was at its worse thankfully as I have improved I only get it now on the bad days. It is hard to describe , it was a feeling of being very uncomfortable and having to move , I would eventually have to walk about but if I sat down it would start again. I personally didn't experience electrical shock feeling , I'm not a Dr but electrical shock feeling is often associated with trapped nerves. Sciatic nerve can cause a painful shock down the leg from hip to the ankle , Warm Epsom salt baths and stretching would help to ease it for a short while .

Thanks pistol thats helpful . I am going to get in touch with my cardiologist to send some information to them as well. I have never been nervous for surgery and i have nine so far but after complications when i had my hysterectomy I'm pretty anxious ! Sure it wil be fine ☺

Hi hope you all doing ok in the heat and humidity . Tore my hamstring last November but when the swelling and pain around my knee didn't subside I wen to Dr, turns out I have torn my menicus as well and I need surgery . Not been able to do my normal exercise regime which has set me back big time with symptons. I am not good with general anesthetic BP drops dangerously low, however I was not diagnosed with POTS and VVS when I had my last surgery ( you know the score i had been moaning for years ! Midodrine has raised my BP on the whole .I have been trying to research epidural as I believe this is most likely what they will want to use. Found some interesting papers which I will print and take with me. Any experiences including good and bad will be helpful ! I really want to be well informed before I see my surgeon. When I have a POTS attack I have both high and low bp and HR I also faint, tremors ,sight and cognitive issues. Any insights will be appreciated Thanks ! X

I agree with Kim. I was self employed and tried to battle through, once I took three months off and had energy to take care of me I saw some improvements . I personally found the pressure of not feeling up to working and pushing through made me mentally drained and had a knock on effect of making my symptons worse. Be kind to yourself, take time for you we do tend to prioritise others in the family first but if we push ourselves too hard we are no good to anyone a hard lesson I have learnt. We had a marking system in our house relating to how bad I felt that day, 10 don't expect even an answer totally dysfunctional , 5 I may get a few chores done and I do have the energy for a conversation. My husband suggested it as I wouldn't admit how bad I felt and I was very over sensitive so got upset thinking he was critasizing me when he wasn't ! This also helped me to stop feeling guilty. Best wishes x

Yes my BP use to go really low 60/ 40 even with florinef at maximum dose, always worse in the afternoons, evening and upon getting up or when I got tired. Now I am midodrine it's not as low.I am worse if I have overdone it or I don't move about enough, very confusing and has taken me 4 years to work out what the right amount of activity and rest is right for me ! I agree I think you should talk to her consultant , my cardio said he notices that florinef can stop being so helpful after taking it for a while for some patients. I hope you find something to help her low BP makes you feel dreadful.

Congratulations ! Really sweet

Hi Bombshell It was my GP who agreed for me to try it, he's been my Dr for over 25 years so he knows me well! He has said he only wants me to use it occasionally if it helps. My consultant is Dr Salukhe at the syncope unit at Royal Brompton London. I have only seen him once, he was very constructive and although it was not a long appointment NHS I didn't leave feeling I hadbeen rushed, my husband was with me so he spoke to both of us and he seemed very interested in what my husband had to say. I keep in contact with the nurses and if I have needed any advise they return your call in 24 hours but mostly the same day. I can ask to see Dr Salukhe again any time but as I am coping I haven't. I only waited 5 weeks to see him from my referral from GP I was pretty impressed with that . I can only speak as I found but I have been pleased with my treatment . He does also do private consultations and was recommended by STARS who he does speak for at their conferences.

Pistol I have spent a lifetime trying to figure this all out ! Before the Internet research was very time consuming . I believe my trigger was an accumulation of physical and mental stress, antibiotics and boarder line anorexia. Every time I get a virus off goes the CFS symptons and then the POTS big time . I think the research into gut flora related to health probkems will become more important, I attended a very intresting seminar recently talk by a gastrenologist on current findings, it's an intresting topic .

I think I am lucky my Dr agreed last week for me to try this as an occasional med for special occasions , my son is getting married and the journey sitting eating will likely end with me having to leave early . I plan to give this a try one day this week and see how it goes . Thanks for sharing your experiences .

My cardiologist and GP are convinced my immune system is to blame . All my symptons started when I got alopecia (hereditory) like you I was plagued with ulcers, eye styes , boils and excema , this continued through out my early teens got a bit better and then again after glandular fever. ,My rheumatologist said he wouldn't bother checking bloods as often they come back normal when clearly there is a problem . Over the years I tried many different treatments to help my immune system but nothing has worked and I made the decision to not try anymore due to the risks of long time immune suppression . I hope you can get some answers to all of this Best wishes x

I have fatigue that hit's me suddenly , I know I have to stop immediatly or a flare begins. I do pacing anyway which has lessoned the fatigue attacks but I still gave them mutiplied times daily they just don't last as long now. I don't know if you have sleep issues but once I got control of my insomnia things improved. I take antihistimes and my Dr changed me to one that makes you drowsy , along with sleep hygiene I have managed to turn my sleep pattern back to 7 hours apart from bathroom visits! I believe this has been had a huge impact on improvement in a number of symptons for me

Hi Sorry you are struggling I remember thinking I would never get any better.I hope my story will help. A member here friended me and gave me advice and hope , I am so grateful to her. Five years ago I couldn't stand still at all I was too dizzy and I would faint , I was diagnosed by my GP by active stand test and put on florinef I was taking maximum dose . I improved slightly but BP always low still tachy and waited 20 months for TTT to confirm VVS and POTS it was a living h***. I finally was sent to Syncope unit at Royal Brompton London where I was changed to midodrine and had very good support from the syncope nurses. Five years on I am back to full time work , running my home again and a very limited social l life but I am grateful for my improvement. I am so in tune with my body that I know my limits and I now listen instead of pushing through and ending up in bed for a week ! I am lucky to have a wonderful husband and son with some very kind friends and I enjoy time with them when I have the energy . I have just about changed everything in my life ! I believe midodrine help me start the improving process, it rose my BP which made some symptons more bearable . I decided to only work to improve one sympton at a time and as that improved I tackled the next.I often found that it would have knock on effect of improving a different sympton that was a plus ! I kept notes on everything and over time could see what was working what wasn't. It has been a long hard journey and each day has it challenges but my attitude and approach to daily life has changed to alow me to be content . Pacing , diet, meditation, mindfulness, sleep hygiene and getting rid of as much stress as possible has all helped. I hope you feel beer soon

Thank you to all of you for the hours you give up to help everyone . The forum and the newsletters have given me inspiration, advice bust most of all hope and that is what has helped me to cope and once again enjoy my new life style . Best wishes to everyone!

Thanks for sharing , intresting although most of it is above my understanding !

In my opinion it's all about finding your own balance and it's not easy ! I live a very strict routine but it works for me ! Meds, exercise, rest, meditation, sleep, diet and not feeling guilty or pressurised by other family members or friends to push through when you really know your can't. The latter can be very tough but after I have made myself ill by trying to please others, now I am selfish about my health I had very low BP and during flares or syncope it would fluctuate up to 175/150, my syncope nurse told me it's the body trying to find equilibrium, it has a name but for the life of my can't remember it sorry! Since getting my BP from being low this no longer happens to me except when I have a virus etc. I hope you feel better soon x

Hi Memee I really can empathise with you, I use to sit in tears from anger, frustration and feeling that I couldn't keep trying to deal with all the symptons . For me I have no doubt stress really makes me worse, it saps my already low energy Pacing , I work a few hours then for an hour i rest, meditate and practise deep breathing as I often can't sleep in the dayeven though I am exhausted. Clearing the mind helps me to relax to give me a little more energy.I do this a rew times a day. My work days are very long due to all the rests I take but it at least means I am working ! Lists and planning. I have learnt to be realistic in my expectations of what i can do. I have one list of things that are urgent that day and another of things I would like to achieve , I have learnt not to beat myself up if I don't get it all done. Prioritise looking after yourself , eating well , exercise , etc Try to get into good sleeping habits , I suffered terribly with insomnia but now I average 7 hours a night . I notice on the nights I don't get much deep sleep I feel exhausted . Good luck with your exams x

Hi I was on florinef increased salt and fluid for 2 years I was on 3 mg a day but still had drop in BP and sympton relief was very small , eventually I was referred to cardiologist who changed me to midodrine , it took some time to increase the dose to 7.5 mg X3 daily but it stopped the drop in BP and has stabilised it on the whole, in fact it has had a knock on effect of a huge improvement in many symptons for me which meant I could make more improvements through strength exercises and daily I practised standing still with a chair to grab onto just incase ! At my worst I had terrible leg and arm heaviness /pain, any demands of exertion would send me into presyncope or a faint , it felt as though the muscles had run out of energy. I do have JHS so obviously vaso constriction is my problem ! Florinef really helps a lot of people and it does take time to improve BP but just wanted to share my experience with you as I thought it maybe helpful if you daughter doesn't see an improvement which I hope she does soon ,fingers crossed for her.

Nice work ! If only we could revamp our bodies so that they played a different tune that would be amazing 😁

Sorry to read of your troubles ,sending best wishes x

I wouldn't meet the criteria for ADD , since I first posted this my POTS and VVS is greatly improved and so has my clumsiness ! Brain fog and word finding continues to be a problem when i am fatugued . I am pleased you brought my posting back up it made me realise today how far I have come in three years , it prompted me to look back at my dairies I keep to help with DRs appointments It has been hard work to get where I am today, taking care of ourselves takes a lot of time, experimentation and energy . Stay strong everyone ! X

That's wonderful news!

I have joint pain its always worse at the end of the day when I'm tired, in the mornings I am really stiff look 90 untill I get moving ! I notice it is worse when I am on that downward trend , stress or illness can't exercise properly , BP goes lower ,pain and fatigue etc etc so i do think its related but I do also have ME fibro and JHS with problems of bursitis and soft tissue injuries , so i have never been sure which is causing what symptons. Infa red lamp, use of a nova sonic and Epsom salt baths dynamic stretching help ease the pain for me.

Yes I do but it all my body , drives me nuts as I too have to keep getting up and move around ! Warmth helps me, I use hot water bottle or soak in Epsom salts both gives relief for a short while

I have IBS which I believe is common in pots I have constipation, growling stomach and bloating . Really have to watch what I eat , veggies that have sulpher such as sprouts cauliflower really set me off . As does carbs wheat and sugars . I take midodrine 7.5 mg X3 or x4 times a day. I can lie down because it doesn't affect my BP , but I know it is a concern, you can rest with pillows to raise your body or use a recliner chair and check your BP is ok. I was told to check my supine bp regulary and it's never been a problem but I was very low 60/40 as I have improved it tends to be higher .I am one of the lucky ones I don't have any side effects from midodrine it really suits me and has improved my life no end ! Just remember it is important to keep your fluids up. Have you looked into mindfulness ? I practise it every day and has helped me enormously in so many different aspects of daily life. It made a huge difference in my insomnia which then helped the fatigued and it was a slow progress but gradually that had a knock on effect of improving the severity of symptons. Meditation and deep breathing help my addrellin rushes which cause my body tremors and feeling of nauseous. It was not a quick fix and takes dedication to stick at it, but for me it was worth the time and the effort in the long term.