Felicity

Just read this - I've just recently realised that Ibuprofen raises my heart rate by about 20 - 30 BPM. It does work well as a pain killer, but the rapid heart rate is very off-putting. I monitor my heart rate for about 8 hours per day, basically so I can spot things like this - have tried ibuprofen in various different forms about 5 times and in all cases my heart rate, even when lying down, was significantly raised. Someone suggested it might be because it thins the blood - don't know if this is true? Paracetemol seems to be fine however. Felicity.

Just came across this topic; I have recently done a saliva test for cortisol/DHEA. My cortisol is very low in the morning, rising during the day, DHEA is high. Interesting that others have the same pattern. I have POTS, often with a very high heartrate (often 170-190 even when lying down!) but BP is fine, don't suffer from dizzyness etc. just fatigue. Felicity.

Hi, One possibility for the short term - not as good as the real thing, but my doctor in Edinburgh wrote to Dr. Grubb in the States to get advice on my case. Although this isn't nearly as good as seeing him in person, he did phone my cardiologist back immediately with advice, and it didn't cost anything! Felicity.

I get numbness and 'pins and needles' (tingling) in my head if I overdo things. Usually my hands and feet go numb first, then the head. Sometimes also weird sensations of the blood pulsing up through my neck and head. I guess it is to do with blood not getting to the extremities (is your head an extremity? ) properly. It is a pretty strange feeling. Felicity.

Hi, I was on Venlofaxine for 3 months. Once I got up to the target dose, I put on 14 pounds in a month. It also did nothing to control the heart rate, so I stopped it. Usually I have no problems with weight, eat everything in sight and don't put on a pound. Sorry to be negative about it! Felicity.

Thanks for this; I found the old discussions and links. I don't have Ehlers-danlos syndrome (officially, but then mostly they've just looked at my heart rate so far), but definitely have this resistance. My dentist will be pleased to get some kind of explanation. Felicity.

Hi, I'd love to meet up, but travel is pretty difficult right now... however if we did meet up anywhere, London would be god - I could get a sleeper down. My Dad lives in Cornwall, but I haven't visited for over a year, as I haven't been well enough to get there... Felicity.

Hello, I use a heart rate monitor and find it really useful. I'm relatively new to POTs though. For example, when I was given a drug called verapamil, my heartrate went up to 200-220 pretty constantly. I felt weird, but probably wouldn't have taken it half so seriously if I hadn't been monitoring. Also very handy for getting medics to listen to you. In February I had a ruptured eptopic pregnancy (been a good year so far and the ambulance men were very relieved to have the easy monitoring. I also chart my heart rate every day, to back up my opinions about the effectiveness of various drugs I've tried. Finally, most of the time I find it a comfort - I set it to alarm at 180 now, and if it doesn't go off I know I'm OK and nothing strange is going on. Felicity.

I had someone do an ECG, I've never had my blood pressure measured, TTT would be a big advance

Just another strange question. I've had POTS for about 18 months, but for many years, I've found that local anasthetic with adrenalin in it at the dentist made me feel pretty woozy and didn't kill the pain even in huge doses. About 3 years ago, my dentist was finally convinced it didn't work on me and now always uses an anaesthetic without adrenalin. Anyone else had this? Makes me wonder if I had something low-level happening all along. Also, if you are going to the dentist, I guess it is worth letting them know to avoid adrenalin. It wouldn't have occurred to me before I had problems; UK dentists seem to use adrenalin as standard, but don't tell you about it! I guess it could do pretty serious things to some of us! Felicity.

Hi, I just had my three monthly checkup with my cardiologist on Thursday. He wasn't there and I saw a research assistant, who I thought was great - had read up on everything and was very interested. I've been tried on quite a few medications so far (beta blockers, anti-depressants, Fludrocortisone, verapamil), all of which have made me feel worse - this seems to be common. What interested me, was that the research assistant though we should monitor blood pressure changes before trying me on anything else. He suspects my bloodpressure is not too bad; I get a tachycardia of typically 150-180 when I stand, within about 5 seconds, but I never faint. I can understand why my cardiologist tried treatments straight away, as I was pretty desperate for something to make me feel better, but I think drugs such as fludrocortisone are more directed at correcting blood pressure, and might be inappropriate if you don't have a problem there. With me, I had pretty crippling cramps when I took a tiny dose of this. Just wondered if anyone else had thoughts on this, or ideas about what tests you should have before starting treatment. Felicity.

Brilliant explanation! For some reason, I always have trouble getting to grips with blood pressure info - I understand it at the time, but it doesn't stick. That's the best way of putting it I've heard - maybe you could get a job translating doctor-speak Felicity.

Hello and welcome. I'm very new here too, have been diagnosed with POTS for about 6 months. I'm 36, and I've been off work for about 8 months now with POTS. I haven't found a medication that helped yet, but there are still a few options. I asked my cardiologist yesterday about seeing Dr. Mathias - quite a trip for me from Dunblane in Scotland, but it might well be worth it. I'll be very interested to know how you get on. I don't think I can give much helpful advice. I also have the 'how can I cope feeling this drained evermore' - I used to be very active and it is hard. On the bright side, I've got much better about managing my life to minimise the effects, and I often have an hour or so a day now where I don't have the overwhelming urge to lie and do nothing. I try to keep reminding myself that it may get better, also I now really appreciate the times when I do feel OKish. Just now I'm spending most days dozing in the garden (sunshine in Scotland!) and although there are a million things I would rather do, I guess life could be worse :-) Felicity.

Hi, I'm another insomnia sufferer, so i sympathise lots. The main thing that brings it on for me is simply doing too much in the day. If I do anything other than read a quiet book, or do simple things on the computer in the evening, I won't sleep until 3-4 am. Occassionally I do see friends for an hour or so in the evening (you've got to have a life!) or watch TV, but I know I won't sleep. This probably isn't much help, but for me it is a trigger to slow down even more. Felicity.

Hello, So I know there are 3 of us in the UK now posting here, welcome! I only started posting last week. I'm Felicity, 36 yrs old, in Dunblane. I was diagnosed with POTS by Dr. Grubb in Edinburgh in November, after only a year of problems. I too have a very wonky heartrate, ranging from dead (only once thankfully, and I was in hospital at the time, doing some tests which I didn't respond to too well ) seriously I will drop to about 30 very occassionally, usually over 100, up to around 220. I don't have anything but POTS as far as I know, so I can't help you there, but I have tried quite a few beta blockers + others both before and after the POTS diagnosis. My experience, and experiences obviously vary hugely, were that bisoprolol (sp?) and atenolol both may me feel totally fuzzy, and did such bad things to my heart that they won't try any more beta blockers. Verapamil sent my heart into a roller coaster, where it would sit around 200 - 220 (even when sleeping), then plunge, then soar again. I was hospitalised during this until they realised it was the drug. Fludrocortisone gave me really scary cramps and didn't do any good, and an anti-depressant didn't help and I put on a pound in weight every 2 days! Hopefully you'll get on better than this, I personally feel much better without any drugs than with any I've tried so far. The good news is that it seems a lot of people have made improvements by adapting their lifestyles. I'm still working out what I can and can't do, but reckon I can live with this quite tolerably, if I behave well! Felicity.

Hello, Thanks for all the advice - lots of useful stuff there, thanks for making me feel welcome too! Dunblane is sadly no better than Kircaldy, my doctor told me that 'women of your age often suffer from palpatations, escpecially if they haven't had children'! Unbelievable... it is lovely to get messages from people who don't think you're just a hypochondriac. My cardiologist reckons I shouldn't take any other beta blockers as the effects of the ones I tried were pretty serious (heart stopping for a few seconds at a time, AV block etc.). I stick to the 2-3 litres of water a day, but strangely it doesn't seem to make a difference - I keep it up as it is healthy anyway, but I guess this is one thing that makes me think it isn't a dilation/blood volume type thing. Likewise for compression stockings, no effect. The heart rate monitor is a great idea - I got one for Christmas, and you're right, it makes you feel so much better. Some people think its a bad thing, that you're being obsessive about it, and it'll make it worse watching it. I found the opposite, I put it on to alarm at 175, then can relax (although I'll alarm about 10 times an hour on that if I'm moving about!). Also, I find that people can be a bit dubious that there is anything wrong with me, and somehow a series of beeps convinces them that I'm not being feeble, I really should slow down. The comments about birth control pills are interesting, I was on injections which stopped my cycle and first had POTS symptoms 2 months after stopping. I'll look into the other medications mentioned, sounds like some could be worth a try. I especially like the idea of occassionally taking muscle relaxants, I have a lot of those half asleep nights, and get tremors in legs, back etc that make it really hard to sleep. It's very cheering to hear that people have taken things that helped, after so many drugs that have just made me worse. Felicity (lots more cheerful already )

I might be the most northerly member (about the same latitude as Juneau, Alaska)? I'm from Scotland, living just at the edge of the highlands. At least I don't have to worry about hot weather affecting POTS, we're still getting frost overnight here and its nearly June Felicity.

Before I got POTS, I used to do voluntary work rehabilitating horses. I used to try supplements/drugs for them and be scared to stop if they were working, and my vet would advise (where it isn't dangerous of course) a controlled reduction then give it 3 months or so and see what happens to the symptoms. In many cases, I found that although the drug in question had definitely helped at first, reducing or removing it had no effect. I think this is very good advice, and possibly applies to people too - be very sure it is still doing you more good than harm rather than just continuing. Come to think of it, I sort of wish my vet was treating my POTS

I don't know if I can say much that is useful, but I took fludrocortisone (same thing I think, it isn't called flourinef in Scotland), for about 2 months. I had very bad cramps with it, and it didn't do any good. I also felt more tired. I was also concerned about taking it as I felt that the long term damage could outweigh any benefits. I've not had the energy to do as much research as I should have on it, but my feeling was that unless it made me feel a lot better, then the risks were not worth the benefits. Like the previous poster, I have had very odd reactions to drugs, such as a drug to slow down the heart rate (verapamil) raising it to a fairly constant 200! Again a personal opinion is that since fairly little is known about the effects of these drugs on people who all may have fairly different things going on in their bodies, you need to somehow walk a line between trusting your instincts and respecting your doctors opinions. Last year I spent 4 days in hospital with staff panicking about my ridiculous heartrate but noone believing me that it might be due to the drug ('verapamil CAN'T do that'). I cheated on taking a pill and finally saw a cardiologist who did think it was the verapamil, but it is hard to judge sometimes what to do for the best. The best of luck whatever you decide. Felicity.

Hello, I was diagnosed with POTS in November 2004, and am in Scotland where it is fairly rare (I've heard of 6 cases so far through cardiologists). I've been 'lurking' on this site for a while, hoping to spot a case similar to mine, but haven't, so thought i should be brave and ask! I have, I think, quite an bad tachycardia, I average about 110 lying down, 126 sitting and 144 standing. Most days I exceed 180bpm a few times, sometimes around 200, usually doing nothing much! The only other symptoms are some dizzyness, numbness in hands and feet, and (of course) I'm very tired. I never pass out. I've had this since October 2003, and was previously pretty fit (spending 3 - 4 hours a day training horses), but now am reduced to the odd ten minute walk and as much Yoga as I can manage... So far I've been treated with 2 types of beta blockers, which caused AV block (I think? they were bad, anyway), Verapamil, which sent my heart up to about 220, fludrocortisone had no effect except for muscle cramps, and an anti-depressant, venlofaxine, which I'm currently taking - I've put on 14 pounds in weight since starting it a month ago, but the heartrate is unchanged. From a very non-medical perspective, I think my problem is in reaction to hormones rather than dilation of blood vessels (I have no swelling in my legs, or other symptoms that seem to go with this). My heartrate is always very raised by standing, but also goes up by 30-40 bpm when I wake up, if I'm upset, if I watch TV, if the phone rings etc regardless of whether I am lying, sitting or standing. I don't feel stressed at all, in general I think I'm fairly relaxed. Has anyone else got similar symptoms, and if so has anything helped, medical or otherwise. Sorry this is rather long, Felicity.

Hello, This is my first post, so I hope it comes out OK. I definitely have the racing heart when waking up. I have a very fast heart rate all the time, but will get the worst rates when I am suddenly woken - up to the 190's! Always first thing in the morning, and also any time through the day if I'm relaxing or dozing and am disturbed. I've put it down to a big adrenalin rush as your body tries to kick start you, but I'm no medic... interestingly (I think!) I've got 4 24 hour heart rate tapes over the last year and in all cases my heartrate goes from about 100 (sleeping) to around 150 about an hour before I actually wake up, with an extra big rise when I really wake. Felicity.