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Bon Voyage! Have just come back from Paris and have improved so much from the break. A holiday is always a good thing.

Great to hear your improvement is ongoing. It has inspired me and I now exercise and think it has helped. My problem is chest pain so even before i knew I had pots and could swim for miles I couldn't understand why I found running so difficult. But cycling and rowing seem fine. My doc says I should rest but I can't think exercise is doing anything but good. Glad you are feeling better.

Really sorry you feel like this. Hope things improve for you soon. Take care.

I carry a shooting stick with a feral(sp?) end - not a spike. It means i can sit immediately wherever i am. I don't faint either but frequently use a wheel chair for long distances as being upright causes me so much chest pain and pressure. Sometimes I take both out and use neither. Chest pain is very hard to push through. Getting a balance is good - we all seem to pay for overdoing it.

Thats awful - to have gone out for a meal and suddenly feel ill. This is just so random. I posted a few weeks ago about reacting to one of the b vits - I think it is b12. I also take a cardio suppliment and Q10 and D and C. I find these help. A few of us have this reaction. Hope you can get this sorted out.

We have gone from unprecedented hot weather for England in March - we were sunbathing in shorts - to snow today. During the previous week I honestly believed I was finally getting better. We even moved the office from my home to the workshops so we can all work together there. Then the weather changed. The chest pain returned and although I have only had full time POTS for 18 months I can see a pattern of being suddenly much worse when the weather changes around November and feeling better in the summer. I know others have had similar experiences - do we know why? And are there any good spots around Europe?

Hugs to both of you. I think you can rely on the fact that as POTS is so random you will feel better soon. Hope so!

Thanks for your replies, - it is reassuring because you are right the doctors just don't get it. And your post made me realise I have now gone past the point of caring what they think or worrying that it might be anxiety. I know it is not. There was no panic in the car - just real thirst. As it's happened lots of times now I feel quite calm and know it will pass. Still wanted to know if it was exactly what others experienced. Also it always makes me ill for 4-6 hours afterwards. Don't know if anyone else gets this? I suppose I feel cross that my pots specialist has never quite taken on board that this happens or have helped with the situation in terms of advise(because they don't acknowledge it happens).

Just been back into old posts and there is quite a bit about flying I had not found before. Still curious if anyone gets the surges without the panic. Also often happens when driving.

I have a few different types of surges that cause a problem. Was having a great day - very hot here, got a bit dehydrated and driving home HR suddenly climbed from 70 to 158 while driving. Managed to pull over in bus lane but knew it wouldn't come right down until I'd had a drink. This didn't feel adrenaline driven - so a bit different to normal. Still feel very shaky from it. So similar thing happened flying - except my adrenaline drove the tachycardia and it went higher. It was probably one of the first times it happened and was frightening. Now i know my hr will come down. We are desperate to get on holiday but could not risk flying after that journey with repeated surges 18mts ago. Flight was late and I think they pressurised quickly. So don't know if it was a complete one off. Really just checking whether this is similar to anyone else and what has controlled this. Generally I can't take bb because they drop hr too low. Maybe taking valium would be enough. Maybe I should just do a short haul (1hour) and see. The journey I want to take is only 3 hours. Thanks

Issie - I can't open this. Really interested as been feeling low on the Fludro and i have some magnesium but been afraid to take it because of erratic reactions. Maybe i should try it now I am more stable.

".. if I happen to be home and chest pain strikes, I usually pour half a glass of wine, relax on the couch and listen to some good music " Bunny - this works for me too. And wine is a known help for angina as it expands the blood vessels. Nitro is too much for me - hr goes up fast.

Yes, Standing and the words seem to pool with my blood - just can't keep a grip on what I am saying - my concentration goes. But even worse are names - this was always bad. On this site i have such a job remembering who's who and what even i have said. I follow the research one week then cannot remember what's what again next week. I am not good with written words but never forget a conversation. The photos really help - my visual memory is great. Love to have a video chat with someone on skype who has similar symptoms - does anyone do that?

So has anyone else been given an explanation that makes sense?

Sorry you are experiencing this - it is so unpleasant. You are not alone - lots of us get chest pain and it was my worse symptom. There are quite a few old posts about this but there seem to be no answers but a few people seemed to have found different things that worked. My specialist just shook her head and said they do not know what causes it and has consequently given me nothing beyond calcium channel blocker which I think helped a little, then I had a few bad reaction so stopped them. Have not found any pain killers work - when it happens with adrenaline surges I usually take 5mg valium which seems to help but wouldn't want to take it all the time. Mine also stays for hours, even when i am lying, down during a bad episode. Hope things get better for you - let us know if you find anything that helps.

Yes Issie - sort of want to rule this out - maybe i will try it when i am ok one day and then i will know i don't react. It could be a useful medication during these flare according to a few people on this site. And would indicate if MCAD was an issue for me. Thanks Alex - the florinef has calmed down these flare but they seem to be breaking through again. i have not had a standing epi test and when i asked my doc she said there was no test for adrenaline that she could do. She also said there was no other medication she could try me on. So your words are comforting as hers made me feel disbelieved. I have had so little continuity or help through the british health system that i am really glad of all the info here and everyones help.

Something has set me of again after a few months of middling health. HR monitor has broken so i did a series of bp readings. 9am 109/77 pulse 77 had a wierd chest /cognitive feeling -fast or slow - don't know then had awful chest pain for hours felt spaced. Then a bit later over a 10 minute period suddenly started small surges and feeling unwell and took these readings: 109/75 hr 65 before it started 156/76 hr 81 141/87 hr81 118/88 hr 62 This was all sitting. It doesn't look that bad but it felt awful and it's the first time i have been in control enough to take readings. I had chest pressure and pain, both constant and sharp, brain fog and i felt very unwell. I didn't panic but i think it was adrenal driven as i needed to go to the toilet. I think it is the raised BP which causes the pressure and discomfort but don't know what to do about it. I thought about trialing benodryl but always afraid of making it worse. Has anyone had a bad reaction from it. This happened to me on a flight 18 months ago and i haven't been able to go on holiday since so i really, really want to sort this out and find something that will control it. Maybe this is no different to anyone else but i have to keep checking that there are no answers to something this horrible.

Issie/Rama Thanks - How would you check if you're low NO. Getting a bad reaction to something can throw light on what mechanisms are in action - there is something in the B complex / magnesium range that upsets me. In the past before i knew I had pots I would have flares and suspected it was from something in the multi vit - but it didn't seem to make any sense. It was such a bad reaction after months of no surges I want to track it down. I think turmeric helps and thats a scavenger - isn't it? So it shouldn't. Are there any other scavengers? I have stopped the soya today but i have been drinking fresh soya milk for months. This was uht and had added B12. Thanks Futurehope - i used to take that years ago - good idea.

Brilliant. Are you still exercising as well?

I now drink it all h tme but it was uht not fresh which is why it had the added b12. Seems so unlikely but something triggered the surges and I can only think it was that. Thanks Issie - I knew you would have a take on it. Perhaps i will give soya a miss for a while.

I know not to take B complex as something in it upsets me. Issie suggested it was B3 which upsets her. Had first adrenaline surge in 3 month last night after drinking some long life soya milk. Had to take valium, bp was 155/95 as i was getting better so goodness knows what it was earlier. It started again this morning after more tea with the soya and when I checked the label it had B12 in it. I am not known to have allergies but then again i have not been tested for them. Generally can't find any correlation between diet and food but i have been looking for the specific vit that upset me for years and i think it'd this. So - as ever - does anyone else have same similar problem with B12 or other vits.

Yes, a bit manic so i kept the dose low.

But can you take them together - is it one or the other?

Hi Jon, Sorry you are going through this. The first thing i would say is drink water. Most potsies are advised to drink 2.5 litres a day. It makes a big difference. Anxiety is also a product of the syndrome so try and keep calm. The people on this forum are probably more ill than the majority of people who get POTs. Initially i only got it post virally and didn't know what it was and each time it would go away. I hope you are lucky and get better quickly. Good luck.

It's been a godsend but has anyone not been able to get their adrenals to start back up again? I don't know what the long term use side effects are? However when I reduce the dose i remember absolutely why I take it and continue on my normal dose 1/3 Tablet a day.