E246

Banana's - thanks that really helpful. Have just started and feeling fine afterwards but still only doing 3-5 mins twice a day on a low seated bike. My Pots doc had told me just to rest but after 15 months of rest and still not better i feel it is the very best thing i have done.

Does anyone keep to within a target HR and if so what? Or do you just exercise for a period of time?

I have sharp pain for short periods and bad dull pain for hours every day. Also chest pressure that lasts for hours that is different again. Sometimes the pain goes down my arm and sometimes it is just in my arm and very painful. I also get a drawing pain like my blood vessels are empty on the left and right above the level of the heart - this happens when i stand too long and draws me down, I know i have to sit. This was my first symptom which i complained about for years. Recently a doc in A&E said it was not cardio pain and was not POTs pain because it continued after sitting or lying. My POTs doc said nobody knows what causes it. Judging by what everyone else is saying it does not seem worth pursuing for an answer.

Thanks, That's really reassuring to know there are medications to deal with this if it becomes worse. Do these drugs interfere with exercise? If they stop the heart beating fast then is exercise a problem? This is really important to me. I presume at the level i am getting these, medication is probably not necessary but at what stage or length of episode would you seek help?

Good post. I too have a stiff neck that creaks and cracks and grinds. Like Issie and Sue i always face the person i am talking to - i can't bear having to twist it for too long. Also can't sleep on one side as it is too uncomfortable and have to sit slumping with head on pillow. Amazing how many of us have this problem. Waiting for mri to rule out chiari, but there doesn't seem to be much that can be done about it?

Chaos - Are you still on it? It worked so well originally but doesn't seem to be doing much now after 10 weeks. I feel ill a lot of the time but my hr is more stable. Thats about it.

Are svt's a product of pots? I notice quite a few people here experience them. At what point do you take drugs to control them? I have them off and on and usually they only last for say 10 seconds but today i had on in the 200's that went on for 3-5 minutes. I tried the valsalva technique repeatedly before it worked. It was a bit alarming not to be able to control it for once and i was very shaky all day afterwards. I can't take bb's as i often have a slow hr. What does anyone else do to control them?

Green - Pots is so random it's hard to know what works. One day something makes you feel better and a week latter it causes a crash. But I sill try things that might make a difference.

Always cold. Wear silk under layer including socks all winter. I always loved the sun and the heat but as I can't fly so I don't know how i would be now. Get hot flashes but have never been anywhere that is too hot for me before.

Thanks Chaos - that is reassuring. I know absolutely it is down to the Fludro but know i will have the same response as you from a doc who always seem to start from a point of disbelief. Rama - it actually stopped the surges which were like anxiety and i felt generally so much better. But anxiety falls along the same spectrum as depression in mental health. There are so many positives in my life and I feel so good about the exercise but this is like a black cloud overhanging all of it. With a head ache. Bp fine.

Thanks - this is really helpful as I am just at the beginning of starting to exercise again. So - you do 4 minutes with any breaks? Is it 1 minute on and 1 off? On the program last night they showed this had a big impact on insulin and helped the body control sugar and thereby delay potential diabetes even after a short program of exercise.

Thats really interesting and inspiring. There was a program on last night about HIITs and it's impact on health from just 20 seconds x 3 with short rests done 3 times a week. The important thing was to go flat out for those 20 seconds. Does you know any more and if it has an impact on POTs - I read the article bit it wasn't clear whether HIITs is a part of the Levine program.

Started a new batch of fludrocortisone 10 days ago and i only take about 1/3 tablet but felt my mood go down and woke on the next day with awful feeling of depression that I never normally experience. Thought it would go but it's not shifting. There's no question that it not from the Fludro, I remeber this happening when I started it 2 months ago but it was milder and it pasted. This has been a wonder drug but the results have been fading recently. On the other hand have felt very inspired by some recent posts about exercising and have started twice daily on the bike for short periods - and it had made me feel really positive but I am still depressed at the same time. Any one else had this from Fludrocortisone?

I too took heart from jangle's post and research article. I have been told repeatedly not to exercise or if so gingerly. This has put me off. I have also been dissatisfied with the general medical helpi have received like janglebut so i have started to exercise and I feel GREAT today. Been on an exercise bike for a few mins a day and returned to swimming today. Used to swim 3 miles a week and been scared off by the doctor. Also was discouraged from working - so glad i ignored this - instead i have built up my company. Yes there has been a positive up turn on this website - seems like alot of us have arrived there together. One interesting point though - the professor I see has been part of a research program that supported the theory that those who had counselling to come to terms with their symptoms did better than those who didn't. I think he whole approach has been wrong and I am leaving it behind. Thank for all these exercise posts!

Rama, I assume you read the article that someone posted a link to regarding Butchers Broom. It was quite difficult to get -had to sweet talked the uni librarian who took pity and sent a copy. In it it says: "...horse chestnut alone had a negligible effect. But when one or two standard capsules or tablets were taken three or more times a day with butcher's broom, the erratic vasoconstrictive action of the butcher's broom was smoothed out, essentially eliminating the roller coaster effect" Like Issie said in an earlier post sometimes it's the combination that works because there appears to be contradictory things going on in different parts of the body. I am just trailing a few supplements for my heart and will try the broom next. The one I bought has horse chestnut and vine leaf - thats how it came. Have you got a handle on the dosage?

Rama, Spotted you as a fellow tippler a while back - might try the hawthorn again - i was taking it for the chest pain before I knew I had pots but ran out. Am now taking Ubiquinol (best form of Q10) and something called Cardi E - a patented heart formula suggested by a doctor. If i think they work i will post.

I posted this as if it works then that has to be a clue to what the problem is. You would think nitro would work if it was just vasdilation but it is maybe too strong for me and my hr shoots up too quickly. Julie - it makes my hr faster if i try and do much after a glass but at least it relaxes my chest. I think sometimes my symptoms -which are varied - are caused by different things and so the chest pain is vasoconstriction which is why a little wine helps but the surges are dehydration and nitro for this does not help. Cheers!

Good post The doc said not to let my hr go over 120 and it put me off. Feel inspired to start again. Chest pain just got worse over the year and if it is vasoconstriction then exercise should help.

The surges I experience are an uncomfortable arousal without the mind anxiety. They are not psychological. I have measured my bp a few times during these events and during one of the worse surges bp was unreadable - the cardio acknowledged this would be the case. Wish i had pressed for more info. I had a nose bleed last week and after sitting for 10 mins bp was 174/102far too high but gp said it was okay so long as it was not sustained. Jangle i also think it's best to keep an eye on it. The Florinef has probably pushed my average up but at least i don't get the spikes and I think it is during these that it happens. I used to run and swim not sure how anyone on this site manages it - the chest pain stops me and still trying to get answers for that. Best thing probably to keep eating garlic, beetroot etc for bp and keeping blood thin with bromeliad/pineapple etc

Alcohol can help angina by delating blood vessels and so i assume this is why it makes my chest pressure/pain better. However the action of the wine also decreases how long i can stand and the amount of exertion before rises in hr presumable from the peripheral vasodilatory effect. The relief from chest pressure is welcome - there is an up side to pots. Anyone else?

Yes about 4 years ago when the pots was undiagnosed and then earlier this year but it was during a period when i felt okish - it was a 24 hour test. Prof M said it should be a standing test but i haven't had this. I was told i had hyper pots then later the same doctor said it was not proved, I do not think there is much experience of hyper pots where i am and there still seems to be suspicion that the surges are panic attacks. I have now requested to see a medical psychologist on the advise of a doc friend who i have known for years who doesn't think any of this fits a psychological pattern - i don't really need telling this though -and i am looking forward to getting an account on my record that reflects what i have been through and hopefully it might lead to more thorough testing or more drugs trials to help alleviate some of the symptoms. Thanks for pm - no that was not my family - just a long shot.

Do you just stop breathing or does your hr change too - does it stop too or go fast?

How do you know to you have sleep apnea? Or do you get routinely tested? What are the symptoms? Quite often while falling asleep i jolt awake repeatedly as feel like i have stopped breathing.This usually happens when i am a bit more tense than usual. ? Just sounds really serious and so many of us seem to have it.

Thanks Anna, you are really helpful. I don't have time to do all the research and am really trying to get up to speed, I am holding work together and 4 children and grand child. Not on BBs as HR tends to drop too low. Did take CCB but these did not do much and then i tried them again before xmas and had a really bad reaction - my family took me to A&E. Midodrine made BP too high. Given that i am in pain and have a lot of surge type discomfort so much of the time I want to try and get some way of managing this. I can cope with the not being able to walk and other things - you just need to be inventive - it's the pain that wears me out. Can i ask who the GP is you see in Devon? I have some family down there - 2 GPs and haven't seen for years. PM me if you prefer.

Anna, Yes i am in north of England and am waiting to see Prof. M but it is a long wait for an in patient appointment. Had tests in London and was quite well at the time but am now on emergency list. Do you have experience of that dept. I really like my consultant here in NE but asked for second opinion when i collapsed in London. Also feel like it took 14 months to get tried on Florinef and still suffering with daily chest pain/pressure etc. and nobody does any tests. Haven't even had a stress test, got one in London and then they misplaced results so didn't find anything out. I still get the feeling nobody's quite believing me even though I have been diagnosed properly. I feel like i am being expected to suffer with chronic chest pain when there are still a whole range of tests and drugs that might help. The florinef's initial good results have worn off. Am i being unreasonable in thinking i should be able to get this under control? What's your experience?