E246

Hey - thanks - that is really helpful. I had the same reaction on euro star as soon as it pressurised and we were only just out of London. It does seems the slight change in pressure just sets of a tachy episode. I took 5mg valium to keep down any anxiety - don't know if that drops BP and contributes. It's hard to know what's best. I have bought oxygen as an aerosol and doctor's fit to flight letter suggests this could help. I have wondered if that was it too. I lost my oximeter that I was going to try on the flight in the taxi. I will have another for the flight on Wed. I just want to understand what it is that causes it. I am just so pleased with myself for facing it. I felt very trapped by being too afraid to travel. Sorry you have a bad time after flying - I can understand that and a few others have said the same. Cheers for your help.

I am so pleased to have got this under my belt as I can now go on holiday. But... The flight was only 1 hour and I HR climbed to145 when the plane pressurised before take off, then dropped after maybe a minute. Coped with this. On the return flight I was very tired and as soon as it pressurised and took off my hr climbed up to 150, then it jumped really fast for maybe 1 minute - probably around 200bpm. (This can happen normally if I move to quickly but have been told it is sinus rhythm.) Its not pleasant and afterwards I am cold and shakey. I recovered and was ok for the rest of the flight. So - any suggestions for minimising this. I had on tights and I drank lots of water. I assume the pressure change dilated the vessels in my legs / stomach and drops the volume of blood to my heart - so my HR increases. I assume my blood pressure drops. Normally its a little high. I take 1/2 tablet Fludrocortosone. Can't think what else to do to try and avoid this. Any other suggestions.

Hi, Sorry you are experiencing this. it was one of my worse symptoms. I found valium calmed it down and then started a low dose of Fludrocortisone which virtually stopped them altogether immediately. I also drank plenty of water, lay down to try and stop the adrenaline firing and made sure I didn't let my blood sugar drop. My episodes also went on for hours and I did go into hospital a few times. With your BP's I would get it checked. Good luck.

Welcome to the site. We are all looking for answers so if your scientific understanding throws any light on anything new - let us know. In the meantime I hope you find some relief. There is lots of info here and it takes a while to take it all in but it has been a lifesaver for me. Take care.

I have a similar problem in describing the my chest discomfort. I have every gadget going to try and see if any vitals are out. Mine goes like this: it feels like pressure in my chest, like burning, and its tight to breathe, and i feel a bit sick but most of all I just feel very ill with it. I also tried to explain this to a doctor and she got frustrated with me for being vague. But it's not a vague feeling - it's intense, debilitating and very uncomfortable. Sometimes I think it is high blood pressure and indeed sometimes it can be higher but not always. Are you having any tests? What are your other symptoms. Hope this helps and keep me posted - I share your frustration.

Goodness - I am so touched by everyones care. It's been such a struggle in the UK getting anything like the tests and understanding that a lot of others seem to get - not always I know - but neuropathy, mast cell, EDS, cervical stenosis etc etc etc have never even been mentioned here. But I am not going to moan anymore. This doc is going to give me a sleep test and then I will educate her. I was interviewed for national tv today for my design company and I am so proud of what I have achieved despite POTS. But doctors think if you work you are not ill. I think this was her attitude not that she knew anything about it or how much support I get from the team or how many times I have to leave in the middle of meetings etc or how many times I have had to phone my partner and say - sorry, I am in hospital again. Thanks again - I will definitely have something to say next time.

Unbelievable! When challenged she said it wasn't like a dangerous heart rhythm and I wouldn't drop dead with it. I was referred to her from the pots doc and it has taken 4 months to get the appointment to check for sleep apnea. I assured her that using a wheelchair for all but very short journeys and never an hour passing when i can forget about it because of continuos symptoms was life changing. The understanding of pots seems to be limited to the diagnostic criteria of 120bpm on standing without any comprehension of the severity of the disabling symptoms. If all i suffered was tachycardia I would be happy - I feel so ill so much of the time and no one seems to get this. It is this that causes the problem.

Thanks, It was definitely "pauses" and the doc then attributed feeling ill that day to having had these pauses. Hyper - that is helpful. There are a few indications that I may end up with a pace maker because of the brady. But I am not on any meds apart from 1/3 fludrocortisone. Could this cause the problem I wonder.

Finally my holter showed rapid tachy top rate 250 and brady of 43bpm. Not sure why it took so long to be believed. But it also showed "pauses". Was told that this happens and was normal? Anyone know anything about this. Seems they were during day and night and happened a few times.

Alex, You have described two hr episodes that I have -the sudden jumps and the slow steady increases. I have this on tape now so the doc finally believes me but it is a lot to deal with. Also the last tape showed pauses - what does that mean?

Thanks - that helps just get an overview. Standing and moving is fine but lying and sleeping are always low 90's and I have started snoring. Suspect this might be EDS. Am seeing the sleep neuro this week so will report back.

I probably have EDSIII and need to look into it a bit more - but - have those of you who have this found HRT improves it? Given that oestrogen helps with collagen and so should help tighten up the blood return etc - has this been anyones experience. I first started 7 years ago with intermittent symptoms of pots but was on hrt - then came of it and within 2 months had full blown pots and have not had a day without it. Sometimes I wonder whether if I was to resume the HRT whether I might feel better. However the progesterone part of the medication was not always easy so I took it every 2 months. I am 55 Thanks

Really well done!

I have bought oximeter because of breathlessness and snoring at night. Ihave checked on line about how to read it but it is not very informative. Anyone give me any info. For example: Should O2 level drop at night - mine does to 90-94 if on my back. Any help just to read the numbers with a bit more meaning. Thanks

Hi, I have posted a few times about this - I had ar eally bad flight. But I had only been diagnosed a few months and was still trying to read my symptoms and probably should have had more water. My hr went up and I am sure I felt scared which then set off my adrenaline. lately I have been on euro star which also pressurises and I had a brief episode of tachy but I stayed really calm and it pasted. On the way back I wore stockings and I was fine. So I have been afraid of flying but I am about to book a flight for 3 weeks time and will mentally prepare and drink/wear tights and stay calm. It's not going to kill me and I can't let the pots rule my life. Probably will take valium just to calm nervous system down. But if you have never had a bad experience no reason why you should. Good luck and I would say go for it.

Yes mine goes low as well and when it first happened i felt like you - anxious to go to sleep. I also felt breathless with it and very uncomfortable with it but this does not always happen. BB's are out for me as they drop it too low and give me the discomfort but my hr probably wouldn't stay at 120 like yours. Did you say this happened after the tilt test - I think if I have a prolonged period of tachycardia a period of brady follows. I agree your doc should have known about the temp control along with all the other ANS disturbances. Hope this helps - and like most things with pots it will probably all change tomorrow.

Sorry you are suffering with this. Absolutely seems pertinent. And yes back pain has kicked in for me on a fairly permanent basis. MRI showed degeneration. Think I probably have eds III but haven't been officially diagnosed.

Thats sounds a really good idea. Did the pots doc suggest it? I am always very cautious with exercise as all my symptoms include chest pain. Hope it brings you good health.

Issie, I was trawling back and found this post too which you recently bumped. Have you tried extra vit K as a supp and is it completely different to potassium - bit confused as it has same initial. Quite a long but v interesting post.

Rich, this is a bit of a crossover with another post we were having - but does a cat scan with contrast show just lung function or will it show heart flow as well? Issie, Yes i suddenly remembered that an anti allergy med could work and would be a good thing to rule in or out. Still really scared to take one in case of a bad reaction. I have benadryl - would this be a good one to try? But it says it lasts 12 hour - are they fairly innocuous.

Thanks, Potassium checks have always seemed ok. Maybe like a lot of tests we are just very sensitive to a change in our electrolytes that doesn't show. Mentioned this at last consultation and was looked at blankly. Lack of acknowledgement makes the symptoms more difficult to deal with. I would go bonkers if it weren't for this site. Thanks

Hi, Just as I was sure I was finally getting better, I got worse and now I have breathlessness as well as chest pain. The fludrocortisone seems to keep my hr down, bp mostly ok sometimes high. At first it was just episodic but now it's there all the time and not sure if there's anything that will help. Any advise?

I dont get this too often but it happened this morning as i left it too long before i had breakfast and i declined rapidly. I definitely link it to lack of food and have had blood sugar checked a few times - always ok. But like lots of things with pots the standard tests never quite explain the symptoms. I have bought a blood sugar test kit - I just want to understand the symptoms. Because if it's this then you can do something about it.

I tried calcium Channel blockers - wasn't sure if they did much and then had a few uncomfortable short surges within 1/2 hour of taking a tablet. I dropped down the dose to 90mg daily. Finally stopped. Ivabradine gave me even worse chest pain. CCB might work for you - they are easier to stop than say bb or florineff. So could be worth a try.

Rich - does your breathlessness go away when you lie down? I am waiting for a stress echo - not sure how they do this but really glad after 18months of banging on about chest pain and now shortness of breathe - which is a new symptom. Also having a ct scan with contrast - have you had this - I think this shows lung function - or maybe I am wrong? What tests would you suggest with breathlessness? I think microvascular angina can only be diagnosised by excluding everything else. Like you I feel like I have either that or pulmonary hypertension.