Advice on treating/coping with high heart rate

[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.

[persephone]

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.

<{POST_SNAPBACK}>

ARGH! the excitement! another Scottish POTS person! I'm in England now but I was at Uni in St Andrews. I am one of the six! Whereabouts were you diagnosed? I was at Ninewells but I know there's an electrophysiologist in Glasgow. I hope to god you're nowhere near Kirkcaldy- I was told by a cardiologist there who hadn't heaerd of POTS that I was mental and suffering from panic attacks.

I have everything you describe. Midodrine helps me for a bit,but after a few weeks invariably stops working- so I have to put myself on a constant cycle- I'm not allowed to get too well, if I do I have to stop taking the tablets cos they'll stop working anyway, if that makes sense.

What you really need to do is get referred to Professor Mathias in London. I was in the Autonomic Unit in the National Hospital of Neurology this week having autonomic testing done, but i had to wait about 4 months for that. I paid to see Professor Mathias in January- he's the only Professor of NEUROvascular medicine (as opposed to Cardiovascular) in the UK. I saw him at St Mary's which is in Paddington, but he also works in the National Hospital of Neurology. Do think about seeing him- I found the cardiologists in ninewells WONDERFUL but they were not familiar with POTS in the way that Prof M is...he's the one with the most answers, I'm told.

Keep in touch- would be great to chat to you again sometime!

I'll send you a pm and email too, incase this thread gets lost.

but it is SO good to hear from another UK POTS person- I put posts up earlier asking how many of us there were and got about two responses. I know of two others- Hayley and Guvna2004, but they're both in england.

Anyhoo, glad you joined us and said hi:-)

[Ernie]

Hi,

Welcome to the forum.

Several of us have to try different beta blockers before finding one that works and some of us cannot tolerate BB.

Ernie

[MomtoGiuliana]

Hello and welcome--but sorry you are having such problems.

I would just add--make sure you keep up with fluids (my specialist has recommended 2-3 liters of fluid a day, and not to go longer than 2 hours without drinking) and talk to your doctor about adding more salt to your diet. This is recommended for virtually all POTS patients and this alone can help reduce high heart rates. Compression hose also works for some.

Hope you can be evaluated soon by a specialist and find medicaton that will help.

Katherine

[mom4cem]

HI,

Sorry to hear you are dealing with the high rate. Welcome though to the group!

I bounce around alot with my pulse and blood pressure. Much of the time I am in the 80-90's resting but getting up it increases and I certainly have the increase when I wake up in the a.m., I even posted about that before. The highest I think I have caught my rate has been 140-145. I have to say that that keeping the fluids up is important. I don't always keep up with it and I can tell the difference. Just the past day I have increased the water intake and I have felt better, has kept the heartrate pretty normal, for me that is. Even my b/p has been better. I used to always be low, over the past year my blood pressure has gone up a bit, then goes back down, but I noticed that an increase in water has acutally helped it to go back to normal.

I take tenormin(atenolol) a beta blocker for the rate. I have used it off and on for a few years and lately it has been more on than off and have not had any neg. effects from it except fatigue if I take more than usual.

Hope some of what we all post puts you in the right direction.

[Guest tearose]

Hi Felicity and welcome!

I love Scotland! Such a beautiful country! I went to the tatoo there years ago, love those bagpipes! Who invented hagas? I hope they left town!

Well, I wanted to share that in my past, I too had very fast heart rates and was even found to trigger SVT's. I "lived" in a range of 127-157 during my standing, walking day. It seemed if my heart was going to get near 160-170 it would then more easily slip into an SVT. These usually were for only seconds, but they would bring me to my knees! I had to learn to not let myself get near 160 bpm.

I began to use a heart rate monitor...it was my lifesaver. I could set the alarm on the monitor so when I got to 140 it would beep and I could sit down and bring my heart rate down before a cycle even began! I suggest you consider using one. The transmitter is a strap that goes around your chest and the receiver is a wristwatch. It brought me peace NOT worry. It is soothing to look at the wristwatch and know you are not in a danger zone!!!

Try to see what may be bringing on your fast speeds. I had to cut down on activities back to back. For example, I clearly recall working in my house and then realizing I needed to go outside and start the sprinkler. I put down my dust rag and walked down a flight of stairs, into the hot sunny air, to the garage to pull the hose and boom! I could feel the SVT and then I "whited out" and then "blacked out"! After this, I wore my monitor!

You will also learn from wearing the monitor what 110, 120,130 etc..."feels like". You will become so aware of your body that this will also help you manage your heartrate and get back some quality of life.

I am also a big fan of compression. This helps to keep your blood pressure up and the heart rate down. I can't take medication so I use the fluid, electrolytes, heart rate monitor and compression to manage my pots.

take care,

tearose

[seaboardbc]

Hi

I have the same problem with my heart rate. I'm on several meds, but the beta blocker that I take is Pindolol 5mg twice a day. It helps a bit, but very seldom is my heart rate "normal". I'm also take birth control pills 365 days a year because when I would get my period my heart rate was through the roof. This at least helps with the really high spikes.

I hope that this info is helpful.

Bren

[kristinp29]

Katherine has a great point--stay well-hydrated. Drinking a lot of fluids--especially water (probably because there's no sugar in it)--continues to make all the difference for me. Sometimes I'll forget to take a drink and I'll begin to feel a little tired/sluggish.

My body couldn't handle the beta blocker. Besides not doing anything for my heart rate or blood pressure, I gained about 10 pounds while I was on it, mainly water weight. Well, I've had problems with every medication I've taken.

I'm glad that you decided to post! Don't be shy! Welcome to the forum.

~Kristin

[sick_of_being_sick]

Hi Felicity,

I was just diagnosed by my internist with POTS about a month ago (after over a year of searching for answers) and I must say that my symptoms seem to get worse depending on that "time of the month". A few years ago, before I started getting sick, whenever I would play sports, I would almost pass out and my heart felt like it was going to beat through my chest. The funny thing was, out of the 3 times it happened, that same day or the next day, I would start my period. So there might be a link to hormones and POTS. Now, during my cycle, there are about 2 weeks where I'm able to eat, breath deeply, and go the bathroom normally (won't share the details :-)). This is followed by two weeks of not being able to function at all. My prolactin levels were (and still are) always elevated (never been pregnant), but my endocrinologist can't figure it out. My internist said that POTS can have an affect on your endocrine and hormonal levels. I also have problems when I wake up. I feel like my insides are tensing and I can feel my heartrate rising. When I finally get out of bed, my heart rate rises to about 130-140 bpm. And my body is SUPER sensitive when I get upset. I also have problems sleeping (I feel like I am only half-asleep throughout the night unless I take muscle relaxers like Ativan as needed. . .maybe you can ask your doctor if they may work for you. . .I absolutely love them!) My friends always say that I need to relax, but I try to tell them that I am relaxed when I get these symptoms. I am on Effexor, which seems to be working pretty well. The best thing that works for me is trying deep breathing. Sometimes its frustrating because I can't breathe deep enough (like something is stuck in my lungs), but after doing it for a while, I start to feel better and my heart rate drops. I am going to my internist in a couple of weeks for a follow-up and to discuss more symptoms (especially the hormone thing), and if I hear any new news, I will definitely let you know. Hang in there!

Ericka

[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 )

[Miriam Poorman-Knox]

Hi-Welcome,

I had many of the same problems, until I saw Dr. Low. He put me on Inderal, as it "crosses the brain". This is better, he feels because midrodine doesn't, and he feels pots being an autonomic problem works. And it does. I also take .1? of florinef. Miriam