E246

Very reassuring - thanks.

Can you explain further?

It's the initial diagnostic tool and a bit too rigid if you ask me. A diagnosis was missed in me for months because they did the test while on beta blockers and didn't seem to take this into account. I have had a few tests where i have not reached 30 above base but once it was during a good patch, once with tight on and once on Florineff. I think the medical profession rely on it too much and actually it is the other symptoms which cause problems - I can keep my hr down by sitting but I can still be suffering with all the other symptoms and feeling awful. My son had a resting pulse of 44 and mine is about 50 which means 80 is the 30 beats above base. I don't really know whether they would count that either. If you are not very symptomatic then don't worry too much and drink lots of water, eat well and hope it doesn't develop further.

What a wonderful job! I am very sensitive to stress leading to adrenaline surges, the smallest thing can set it off. However the florineff really stopped this happening except for in extreme circumstances. Can only think the hair trigger was caused by low blood volume leading to over production of adrenaline to get more blood to my heart. If it has already started to improve your symptoms then maybe you will be lucky Hope it has the same effect on you. Good luck with the return to work.

Yes, I've posted a few times about this as it been a problem for me too - bit different as it's during the flight but this can continue afterwards. I used to fly lots and had many difficult flight before i knew why. Then I found hydrating really worked until the last flight when I had a bad episode and am still building up courage to try a short flight - there are not many ways of getting out of England otherwise. Once I went straight from the flight to casualty and was in for 2 days. And another trip triggered a three week episode with a few hospital visits. This was all before I knew what was wrong. Lots of people on this site have ways of dealing with symptoms to cope with the flight. Might be worth looking back at other posts. If you find any magic solutions let me know. I haven't flown for a year.

Yes, I have this - not all the time. Sometimes in bed it feels like my body is vibrating. Hope you are feel better now.

Hi Rich, Yes i have even asked a cardio if it is possible this is what i have but he wasn't having it. Was just thinking about you as my symptoms now include breathlessness with and without very slow hr. It feels like hypertension in my chest but arm bp at the moment ok. I am about to get a lot of tests done so might get closer to understanding. Any suggestions for chest pressure relief.

Yes thanks - i am about to get a monitor and to see a sleep doctor. it did happen as i was dropping off. BUT - my hr has gone really slow and unless i move it stays around 50 and more importantly my chest hurts. This has been going for a couple of days since i got out of hospital. Generally not feeling great and trying to take it easy. Can florineff do this? They did all my bloods in hospital so i assume my electrolytes were ok. This is starting to really worry me - thanks for your help.

Issie, What long term issues have you been able to find? This is my big worry too but at the moment I don't feel I have any choice but feel very worried i will be on it for life. Are there any studies / info about long term us? Really interested in anything you find out. Thanks KJmom - is her blood pressure elevated on it - Florineff increases BP and I know when my BP is up I feel quite anxious. Florineff worked instantly for me- it must fit with my particular type of pots - it turned night into day (for a while). Doesn't seem worth taking if it does not have a discernible effect. Wish you well sorting this out - the anxiety is probably the worse thing.

My UK Doc said that there was no evidence it helps and not to salt load at all. I feel really comfortable with that and am with you in worrying about long term consequences. There were some posts recently about this -might be helpful.

Thats a brilliant observation Peace.

Thanks, afterwards I wondered the same - maybe the connection had been lost. Probably paniced a bit as i had just been in hospital overnight. The bradycardia is getting slower when I lie down (below 50) and i have been getting a bit concerned about it. Thanks - if it happens again i will check pulse.

Yes every good day I think it the beginning of recovery. It knocks you back everytime.

I optimistically believe my pots will get better but my fear is that it wont. And i accept i probably wont be able to do some things ever but I am afraid of just growing older and more ill. All my issues with chest pain make me anxious when i have bad episodes that i will have a heart attack. In life generally I am not very fearful. Rather it seems to have made my husband very afraid for his health and he has become very exercise and food conscious.

I increasingly have hr dropping to 50-55bpm when resting. Sometimes when i am not feeling well it can make my chest feel sore and I will feel a bit breathless with it. Today when I was dropping of for a nap my monitor beeped and my HR was only 19, sat up and it went to 22 so stood up and pumped my hands and it jumped finally to 84. Maybe this often happens and I only know because i have a monitor on? It's really worried me - should i do anything about it?

Wow - it has taken ages but finally I will have a series of tests. It took a really bad session with crushing chest pain and despite vowing I would never go to A&E again I knew I had no choice. I stood my ground and was very clear and now i am to have: Cat scan with contrast Stress test with echo - I said I would prefer exercise to drug as i have had enough sitting tachycardias and I associate them with adrenaline surges which I can't bear. But maybe I am wrong and I would be better with the drugs. Any advise? A barium meal - to rule out stomach spasm. Then the cardio is going to get together with neuro and try and sort out the svt after pain, etc. At last!

Lemons, I read your post on hospital just after being told I needed a ct with contrast - so a bit worried now. Wonder whether anyone has used sedation first - even valium - just to take the edge off it? Sorry you went through this but what would you suggest might help? And did it show anything?

Hi, I don't feel tired either - in fact I am raring to go - it's just my body won't let me and if I do too much i just become ill. It's very frustrating but I feel I am lucky.

Can anyone say if they have had more than one. Is it the case that there is not much change over time. I had one 10 years ago and I know my ejection faction was 70% then so there has been some decline. Anyone know more about this?

Yes i get lots of odd sensations with my heart and changing rates. Like you Kimbellgirl i get pain and it come or is the start of feeling unwell. Misstraci definitely get it checked for your own peace of mind. Good luck

What does the grapefruit / oregano act on?

Due to see cardio in 2 weeks. I had an echo 15 months ago not long after being diagnosed and having pots full blown. As most of my symptoms are chest, neck and arm pain, SVt followed by chest pain, brady/tachy HR and highish Bp rather than tiredness, dizziness or digestive was wondering whether i should be having another. Quite concerned that I have been unable to exercise for this period of time and my ejection faction was already 55%. How often are these necessary? Thanks

Yes great thanks - that really helps.

Thanks, Yes I have some issues with lower back compression and this has been worse recently. I eat broc/spinnach/meat/carrots every day so good diet. Could try lipoic acid. Yes I have also had issues with sugar level dropping but nothing official. Often see others mention neuropthy and just wondered whether it was the name of the numbness. I have alot of chest/heart symptoms I am trying to get resolved so I know no-one will be interested in my numb heel. I have actually mentioned it to 2 docs and got a blank look.

never quite been able to work out what neuropathy so if someone could help clarify it for me it would be great. My heel started to go dead a few years ago before the pots dx and it's getting worse - is this neuropathy and if so is there anything i can do or should do about it. Is it indicative of anything else or of the type of pots i have. Thanks