dancer65

Hi I didn't have cauterisation but a scrape it was a long time ago but I know I didn't have rectual bleeding this was before I was diagnoised with POTS and VVS but my problem afterwards was passing out and stopping the bleeding from my insertion. Here in uk we can ring the ward we were on to ask for advice, is that an option for you ? If it were me I would be checking with your consultant or GP that this is normal sorry I was not any help to you but please let us know all is well x

I had this procedure, They did not find any endometriosis at that time but I was told it can sometimes be hard to see . As my gynae problems increased one of my diagnoises was adenomyosis basically endometrium breaking through the lining of the womb feel free to ask me your question happy to help if I can !

Hi Debbie. Rose yes I would love raised beds not only for easy access but we live in wet Wales and slugs can demolish a whole crop of anything they fancy in one night ! Portable sounds great too never seen that before , ummm you giving me ideas now ? Hope you get to trying out the new tomato grower this year

I miss my proper gardening like crazy , for me it's so therapeutic hours use to slip by so quickly. We moved three years ago and we have renovated our house but the main garden is a wasteland at the moment so bad it needs a digger in it! Hoping when it's done I will be well enough to grow all my own veg and fruits like I use to so for now it plants in pots with a few veg !

I am sorry I can't offer any advice or experience but just wanted to say welcome to the forum . This must be very distressing for you all , I hope you find some answers best wishes

Mine is in both sides every evening just can't get comfortable at all ,the fidgeting drives my hubby mad !!! The severity of it can differ but I can't seem to find a trigger or reason for it , frustrating !

Hi everyone welcome this forum has helped me so much hope you find that too !

I have this problem most evenings and during the night but it also includes my arms. This has been one of the most annoying uncomfortable sympton for me and so far my syncope nurses who I check in with monthly have no suggestions. Like the others said walking around , warm bath I use Himalayan or Epsom salts in the bath seem to help the best for me, lymphatic massage helps to relieve it for a few hours

Wishing you luck for tomorrow. I was really worried I would flunk the test but after 15 mins my consultant informed me that they would continue with the test as they were having interesting reading , at that time I felt OK so I was suprised , 10 mins later it all got even more intersting and the symptons started to hit me and I eventually passed out ! Try to relax ( I know almost impossible ) and I hope this gives you some answers

Thanks for your support everyone it always comforting to read of others experiences , you get use to your normal episodes so when something different happens it can be unsettling, how I wish none of us had to deal With these problems ever again! sarah thank you for your kind words I am struggling again but hoping this is just a set back for a short time , been very careful not to push too hard . Dad of pots son sorry to hear he does this in his sleep too bad enough whilst laying down, thank you for sharing ancy yes midodrine has really helped me so far to stop the daily attacks and my BP on the whole is better thanks everyone I feel more at ease with your input ?

When I am pre syncopal lying down usually does the trick and I don't faint , whilst shopping at the supermarket felt the usual warning signs but even though I managed to lay down I still passed out , according to the first aider twice but I don't remember . She also said when I came around I kept holding my breath don't remember that either , I do remember though not being able to move my face it felt paralysed as the paramedics arrived . ( store staff called them as they thought a was having heart attack embarrassing!)I usually not able to communicate after an episode but this actually felt very different and really shook me up , it wasn't a pleasant experience ! Just wondering if anyone else has fainted whilst laying down or a feeling of paralysis, this is a new one for me ?! Thanks !

I don't have any really great answers for you but I feel for you as I understand your desperation. I hope by sharing my experience it gives you some hope for the future I am really sorry you are having such a hard time . From my GP suspecting POTS to getting a TTT took almost two years where I could not function . I was in a state of desperation and frustration as I never thought I would get better . During this time I spent a lot of time resting because of pain, exhaustion and dizziness, my BP was always very low even on florinef although it did help a small amount in the beginning but exasperated my migraines to a daily symptom for many months. I found doing nothing made my symptons worse but then so did standing ! However every 45 mins after resting I practised standing legs crossed and clenching bum and leg muscles I also kept up with floor exercises for legs and abs, I couldn't manage to work my arms as it caused severe pain and pins and needles. I was already on a fairly strict diet due to my autoimmune issues so I tailored it even more. It was a a painful very slow process resulting in small improvement but gradually I was able to do light chores for a very small amount of time. this ability, crept forward at a snails pace with setbacks along the way! It is mentally demoralising to be in this situation , it takes time to adjust to the new you and I had to change my mindset from anger at myself and frustration to been pleased I had actually managed to do one load of washing that had taken me all day! I took inspiration from others here who offered support, kind words and reported improvements in their quality of life over time I held onto that hope and fought hard to see a POTS specialist. I just hope you find Answers really soon to help you move forwards . Three years on I have improved and I have learnt to take each day for what it is , I have become an expert in prioritising! Hang in there , big hugs to you!

Hi I have been on midodrine for almost a year , my BP was very low 80/40 and I was diagnoised with vaso depressor syncope and POTS. I had to tritate up to 7.5 mg before I really saw the benefits to a point it made a difference and I really saw an improvement in the severity of symptons . Midodrine has raised my BP during the day and has stopped the dizziness and generally has improved my quality of life along with other lifestyle changes. It hasn't helped the tachycardia that much my resting heart rate is about 58 to 63 and when up and about HR is about 100 -125 but apart from making me feel fatigued the pounding heart doesn't bother me , think I have had it for so long it doesn't cause me any concern just can be annoying! I still have presyncope and syncope attacks but where they were a daily occurrence before midodrine bad ones happen perhaps once a month now, unless I push myself too hard or I am not mindful of my triggers! I have not had any side effects at all unlike florinef which not only made me feel ghastly made me put on weight which I am still struggling to get rid of! I wish you luck on this med I hope it works as well for you as it has me ! It's has not been a miracle cure for me but I am on the whole more functional on a daily basis. I may also add that it has been a very slow improvement and it has not helped my vision or muscle and joint pain at all . But I am happy for any reduction of sympton severity ! Best wishes!

Hi yes I get pins and needles and my hands and feet go red along with a itching burning sensation. My attacks usually start with feeling hot sweaty chest pain difficulty breathing and tremors . These symptons can still continue whilst I am laying down and my BP and HR is all over the place . I have found drinking two large glasses of cold water as soon as the symptons start to have helped me the most, also deep breathing and relaxation recommended by Katy ( my husband helps me with instruction as the brain function can be lacking at these times) whilst it hasn't always stopped the attack completely it seems to make it milder and shorter. It use to be frightening when these first started but now I'm use to them I feel more in control and I think that helps. Hang in there x

glad you are home !

Just sending my best wishes to you all . Pleased you found someone interested in her case . Hugs for a better time x

my first reaction was to ventolin at age 12 around the time my auto immune problems started. I suddenly became really allergic to animals around the same time

Good to hear your feeling better wishing you all the best for a speedy recovery ! Hugs !

Ancy sorry I don't have anything useful to post but just wanted to say how sorry to hear your are having such a rotten time . Sending best wishes to you

Hi BIll just wanted to say welcome and sorry to read of all your health problems. I don't know where I would be without this site the wealth of knowledge here is so valuable and its members so supportive. Nice to meet you !

Hi when I joined here two years ago I was rock bottom, both physically and mentally I couldn't stand due to low BP even sitting made me faint, I thought it would never get any better. The variety of POTs symptons worried and scared me at times.I have learnt my triggers so I can avoid them a best as I can but still have pre syncope attacks a few times a week Each day is different and I try to listen to my body it's a constant assessing game. I getting quite good at prosponing unimportant jobs !! I have learnt so much about coping from members here both through lifestyle changes and my attitude towards this frustrating syndrome ! My husband has been my rock and reminds me we are in this together I have lost some friends who just don't understand but also amazed at some friends who have just been there for me in my times of need. Its hard to stay positive when you feel so bad I posted this because hearing of other improving made me determindd to get the right dr and treatment plan gave their stories gave me hope I could get some quality of life back. Best wishes

Thanks Sarah for posting this I have been e mailing friends and family all week it would be good to see some research in the uk !

Just wanted to say hi and welcome ! Glad you starting to see improvements after being diagnoised.

Hi dizzygirls thanks for the information I have been reading up on this today . Interesting as my husband complains my body radiates heat as soon as I go to bed we even bought a superking bed so he can get away from me ha ! My back get really hot and itches I hadn't connected that to the other symptons as it doesn't actually hurt like the hands feet and upper arm thankfully. I have found The burning is not so severe since being on midodrine so that sort of makes sense Really sorry your daughter has still got so many problems I hope you find some more pieces of the puzzle soon and hopefully find her some relief, pain is so exhausting my leg arms and neck give me constant pain in various levels best wishes

I have burning palms and soles of my feet, sometimes it is excruciating pain other times just very uncomfortable and itchy, the skin is very red . I also get the same sensation and red skin on my right arm at the deltoid muscle. I wondered if it something to do with nerves but I really don't know! It drives my husband mad as fidget in bed ! I do also get it after baths or showers