dancer65

I love cooking ! That looks good , always nice to have pickles that you have made yourself taste so much better than bought IMO.

I have both POTS and VVS before midodrine I use to have very large fluctuations in both BP and HR , nowadays the fluctuations are much smaller, I am use to them now but understand how scary they can be. I think pd8 suggestion to keep a log of reading and symptoms is a really good idea, I did and it was really helpful to see patterns . Strengthening the core and leg muscles is important just start slowly and build up gradually.

I have episodes daily , I know I do too much very often but I need to work, I'm self employed and by the weekends I feel wiped out partially in the winter. Meditation and deep breathing exercises have helped me . I use cool packs on my neck ( my first sign of an episode is getting hot ) and drink a glass of cold water in one go.This usually stops me fainting and then I have to try and just get on with the numerous symptons that follow. I have learnt that sitting around for hours makes it all worse , so gentle moving around for 15 min's every hour helps me on my days off. This may not help you as we are all different but you need to experiment with different solutions. Learning your limits takes time and even then each day can be different so its not fool proof and i often misjudge it. Getting upset will only make it worse and keeping a positive attitude is important . Finding things you can do that you enjoy gives you a sense of achievement and can be relaxing , reading ,sewing ,painting etc and my favorite spending time with hubby just taking it easy . Deep breaths and think happy thoughts ☺

I agree with all that has been said ! It's really hard to believe that things can get better but they can ! It takes time to learn your triggers, what helps, when not to keep pushing through and to listen to your body . I have made many lifestyle changes and along with midodrine I do pretty well theses days but it's not an easy journey. I remember been scared ,confused and actually questioning that all these symptons could be real ! As time has gone on I have learnt to read my symptons which I can ignore and which I have to take note of I haven't fainted or has bad presyncope in about a year now . Look after yourself x

They also are associated with heart rhytham alliance and in their newsletter, I am a member , they have articles on heart rhythms Afib etc which is why I suggested them .I haven't been on their website in a long time . I have ME/CFS and recently I got diagnosed with fibro, I hope you find some help !

Hi Peter Tel number is 01789 867503 STARS stands for Syncope trust and reflex anoxic seizures. They are a charity , they also have a Web page with lots of helpful information. www.heartrhythamalliance.org They seem to know about autonomic issues so I hope they can help you . Keep us posted x

Have you thought of getting in touch with STARS ? They have a helpline and a list of Dr's many speak at their seminars. I spoke to them when I was desperate and the lady I spoke to was very knowledgeable and helpful. It was because of her I got referred to my syncope unit in London. I was seen in four months from my Dr referring me which shocked me as I waited 18 months for TTT ! I hope you find a good Dr soon . Good Luck

Hi Your daughter symptons sound very similar to mine, I do have POTS CFS and VVS . Four years ago I had to go the stairs on my bum! I am pleased to say I have had improvements. Muscle fatigue is something I still have to manage very carefully. I am on midodrine which has helped me enormously I never had any answers for the muscle fatigue heavy feeling from any Dr or Consultant I saw, but after lots of research I found a lot of information on mitrochondial dysfunction, this theory just resonated with me personally. There are some interesting thoughts on this on CFS forums and some articles from Sarah Myhill. Not saying it is your daughters problem but I introduced some of their suggestions and I have made progress . Just a thought that's all . Hope your daughter finds some relief this condition can be so disheartening

Hi Dyna bands are a great way to start resistance training , they are great for toning muscles which will help stabilise the joints. You can buy different resistance bands , I have bought sets of three , easy medium and strong from amazon. You can tie them to go around the ankles so you can do adductor and abductors on your side . On your stomach you can do hamstring curls . And sitting on your bum leaning on elbows leg raises . Untied you can do arms bicep curls, lateral raises by having one end of the band under your foot whilst sitting . Triceps can be done by dropping one arm down your back behind your head , other hand reaching up the back each hand holding end of band , the tighter you make the band the more resistance . Those are a few very basic exercises. Gym balls are also great for core but no good if you get dizzy ! A small foam football can be placed and squeezed between knees , under the foot for thigh and calf work and between hands with elbows lifted in line with chest for pectoral and arms . Pelvic curls are great for core. Placing the hands on the the ichiums means you can feel the back muscles working whist working the abs . I am fitness instructor and sports therapist , I do quite a lot of work with disabled clients, I live in Wales if you send me private message I would be happy to send you my number to have a chat if that would be helpful . I know you have EDS another consideration for you . I hope this helps ! Xx

I use to have low BP all the time if would drop even further on standing and I would faint . I use to feel lightheaded even sitting along with other symptons, I just couldn't function. Midodrine has stabilised my BP on the whole. I have VVS and POTS. It's hard to know which is causing which symptons but in truth both of them are treated in a simliar way . If you have symptons I would try to get some answers , Beat wishes x

StayAt home mum it usually hits me the next day . When the fatigue is worse then the insomnia kicks in then I am even more exhausted. Hard not to get annoyed and frustrated with these cycles .

Bellajulz that's great it's helping, does it help with fatigue ? I often think that tachycardia makes my fatigue worse. Thank you for sharing your experiences Bombsh311 I always thought my tachycardia was due to low BP, this last few weeks I am questioning my theory as my BP is not any where near as low as it use to be . Problem here in the UK they don't have resources to delve deeper with tests to find out the cause . I love to know how you get on with Ivabradine if you do try it.

Thanks to everyone for your encouragement and kind words ! This couldn't have come at a worse time, this weekend is my Ballet Schools annual show so it is full on for three days ! My cardiologist told me I could take up to four doses as needed to help with my long evenings when I am teaching so whilst I haven't had to do that in a while I have been this last two weeks . My BP is pretty good 110 70 I often get highs and lows as well but resting and extra hydration usually helps. I often don't feel my tachycardia unless it gets over 125, my resting HR is usually late 50 s to early 60s so going uo to 135 feels very uncomfortable. Every day my HR is spiking on and off all day and I'm in cardio for at least two hours at a time , I am wearing compression on my legs and my spandex . I spoke with my syncope nurse I can go down to London to see my cardiologist before Xmas to discuss ivabradine, going to have a think about it it could be a good short term help to get me back on track . Don't know much about it so will do some research I think Thank you again everyone I know you all understand how every relapse we have is a huge dissapointment , however we always pick ourselves up and start again and pretend nothing is wrong ! We would make great actors 😃 Xx

No I am on midodrine can't take BB due to low BP.

So I suppose I am just dissappinted ,frustrated and having a rant, sorry ! I ripped my hamstring three weeks ago and spent 5 days on crutches which I am pretty useless with! So I did exercise as much as I could with floor work and gently trying to stretch my injury . I can now walk very carefully but not at any speed as my hamstring gives way. So all week my heart rate is jumping over 50 bpm every time I stand up and I can feel my heart pounding sweating amongst the other symptons that have mutiplied in severity and some symptons that I haven't had recently have returned. I know resting too much makes me worse I have to move every hour during the day. Just feeling frustrated that I have deconditioned so rapidly after all my hard work , sigh as I remind myself to be patient yet again and hope I recover to near where I was soon Best wishes to you all thank you for being here and letting me vent !

Yes it does lower BP in its generic form minoxodil was used as a blood pressure drug , I think it was in the 80s it was noticed that it prevented further hair loss . I take midodrine which has definatly helped with the exercise intolerance but it has been a long slow process to see improvements . I hear you I hate the winter I just want to hibernate or cuddle up in a blanket with a hot water bottle ! Stay warm and good luck tomorrow x

Rogaine /Minoxidil is a vasodilator so nutrients can reach the hair follicle ,it also affects the calcium channels I believe, maybe that's why it exasperated your symptons . However it's good you feel better I hope stopping it doesn't affect your hair loss negatively

I couldn't raise the head of my bed because the bed frame is fixed to the wall .I tried propping up with pillows but as I sleep on my side that didn't work out well. I just wanted to say once I got my sleeping patterns better I started to see improvements in a number of my symptoms. It took about 18 months to get my sleep better and I still get insomnia occasionally . I have allergies so my Dr changed my antihistermines to one that causes drowsiness, I practise meditation and mindfulness along with relaxation and breathing techniques. There are some interesting threads on pheonix rising about this

Do you have muscle tension or pain in occipital area ? My nurologist wrote a letter to say to my Dr he thought the headaches/migraines were caused by fibromyalga . I have headaches most days and migraines lasting about 3 yo 4 days .

I had low blood pressure about 80/40 once I tritiated midrodine up to 7.5 X3 a day I saw a difference 110 / 70 most of the time . Usually get low bp in evenings once midodrine has worn off , or if I'm tired. I hope you get it sorted , low bp makes you feel so dreadful.

Hi I have CFS, VVS nd POTS . I took florinef to begin with it helped with OI in the beginning but not with anything else . If i remember righty i saw an improvement in dizzyness in about 10 days .I did experience worsening of headaches my dose increased over 12 mnths to 3mg a day but the benefits werent that significant for me so I was changed by cardio to midodrine which has helped me much more but even that had took time. I have read many stories of florinef been a great success though. I stopped florinef overnight as per cardiologis instructions I was ok but started midodrine immediatly. Good luck !

I have had autoimmune alopecia universalsis since I was 12 , I have taken autoimmune suppressants and had numerous treatments none which had any lasting or promising effect, I gave up all treatments at age 21 and I just wear wigs and headcovers. Minoxidil did nothing for me. Has it helped Green ? On hairloss forums I have been in touch with four women who have POTS. Going bald is not easy to come to terms with whether your male or female but hair replacement solutions are pretty good these days and at least they don't have side effects!

So pleased for you, sounds as though you are doing a great job with taking care of yourself ! Best wishes for speedy recovery

Pistol that's really good news ! We can't get IV fluids here in uk I'm sure they would help when I'm in a flare like now ! Enjoy your spring and smile 😊

If only 😊