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Hello! New, Questions, And The Like =)


Lauren78
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Hello everyone...My name is Lauren and I am new to the group, and new to having POTS also. I have been having palpitations, fatigue, lightheadness and a myriad of other symptoms for quite awhile now. I was blown off initially, which was a year and a half ago, after having heart studies (MRI,CT,EKG,Holter) done that showed nothing, and very frustrated. After having an episode again and going to a new electrophysiologist he took one look at all my symptoms (palpitations, pre-syncope, lightheaded, bloating, nausea, exerciseintolerance, low blood pressure, tachycardia upon standing/incline,and many more) and he said we needed to do a tilt table test. I went last Thursday and had the test done and had major symptoms (including 250 bpm and low blood pressure) and finally syncope. The test was torturous! But glad it led to a diagnosis, which was POTS and also vasodepressor syncope.

I am relieved to have a diagnosis, but also apprehensive about the future. I don't know anyone who has anything like this, and feel sort of alone...so glad to find some POTS groups! My life has been effected (prior to the diagnosis) because I can't do anything I love to do, like hiking, exercising, or much physical exertion. It's rough because I am only 29, about to be married, and my fiance' is a very active person also. So this is an adjustment for us. (And I hope that maybe with meds I can do some of that stuff again).

I was told to increase my salt intake and drink lots of fluids. They were going to give me Florinef, but family history of problems with that made it a no go. They prescribed Midodrine, but my insurance covers next to nothing and it would be $150 a month (being a FT student, that is out of the question). So they said they will probably prescribe me an anti-depressive because that works with POTS also and is cheaper. Anyone ever heard of this? Anyone on anything like that, and does it help? Any other things, medicine or non-medicine, that might help? My biggest problem is exercise, hiking, and household chores really bother me lots (pretty much any physical exertion).

Also, a few symptoms I haven't found anything on is being uncomfortable when lying on my side or on my stomach. Feels like I am crushing my heart. Any one else get this? And I also sometimes get pressure in my throat, like it's being squeezed but I can swallow fine. Anyone have this too?

Alright, I just realized this is very long, so I will stop now. :) Sorry this was so long everyone! Glad to know you guys are here and I look forward to getting to know everyone. =)

Thanks,

Lauren

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Lauren--welcome! You will find answers to many of your basic questions here:

http://dinet.ipbhost.com/index.php?showtopic=1954

I also have an article that overviews POTS that I can e-mail you if you send me a personal mail with your e-mail address I will send it. I found it really helpful when I was early in diagnosis.

I was very sick/disabled with POTS in 2002/2003. I take an SSRI and it has helped me tremendously. While there are some physical things I can't do--I can do most things I want to now. I took a dance class this fall and winter, for example, and did fine! Exercise actually is important for POTS patients--but you need to take it slowly and talk to your doctor if you have any complicating conditions besides POTS.

Sorry you have POTS, but glad you found us. Hope you feel a lot better soon!

Katherine

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Hi Katherine! Thanks for the warm welcome. =) I would love to have a copy of that article. My email is harmony7877@yahoo.com.

I am glad to hear you can do things more now..and a dance class! I can't even imagine, but that would be wonderful. I do exercise at the gym 3 times a week but it takes a really long time because my heart rate goes up VERY quickly and I get lightheaded. But I try my best. I saw YAZ exercises on this site and thought I would try those too. What kind of SSRI do you take? I read something somewhere that Celexa is good for POTS. Ever heard of it?

Thanks...I am glad I found you guys too!

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Hey Lauren,

First off I want to welcome you to the forum, it has been a great help for me in dealing with all my POTS issues! I do take an anti-depressent, it isnt a replaicement of florinef, for i was never told to take that...or yet at leaste, but it is for pain management when trying to sleep at night. It helped a great deal for about the first 10 months i was on it, however now i think my body is starting to get used to it and its not working as well.

I dont really have anything to help you for your other questions, but im sure there are others here who would be able to help you out!

Good luck, glad you found us, too bad you have a reason to be here, however since you do i think it will be a HUGE help in dealing with everything.....i know when first being diagnosed it can be quite overwhelming, i was only diagnosed in mid-April, but have since learned a great deal of information about POTS.

Hope you have a nice evening!

Mary

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Welcome Lauren!

Yes, using an SSRI/anti depressant can be a big help but it always depends on the person. I am also currently on midodrine and florinef and YES it is so very expensive. If my insurance didn't take care of it I wouldn't be taking it, and it was what really helped me.

Increasing your salt and fluid intake are always a plus! This is a way you can raise your blood pressure every day non-medicationally. Therma-tabs are a great way to get salt and can be found for $6 a bottle at your local drug store.

Any kind of pain in your chest is always worth getting checked, but more than likely if they don't find anything its just one of those strange discomforts from the pots. Same with the swallowing.

Always check with your doctor first though.

Glad you found us here, its always good to know that your not alone in this! :(

And I know what you mean by being so young, i got sick with pots at 19.

Nicole

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Hi Lauren,

Welcome to the forum.

Are they sure your tachycardia is sinus tachycardia? a heart rate of 250 is very much out of ''normal'' ballpark for the typical pots patient or for a sinus originating tachycardia.......I have gotten up to 210 before, but that one only on one occasion.....mostly between 180-190 if i'm not on meds......250 BPM isnt necessarily that common with sinus originating tachyarrhythmias, though i suppose it can happen. What are your rates supine?

Have you tried beta blockers? With rates that high, I would think a beta blocker would be in your best interest......but you'd have to be careful in picking one, some work more on BP along with HR, and if you are hypotensive to start, you'd need a beta that acts less on dropping out the BP....or make sure you counteract the effects that beta can have with extra salt in the diet,.,,,,

Take care and I hope you get some help for your symptoms..

Angela.

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Hello Angela, Nicole, and Mary...thank you all for the warm welcome. It is so nice to found such a great support group with great information and nice people. I don't feel so alone in this now.

Hmmm...sounds like I should find a way to get the Midodrine. The anti-depressant sounds like it will at least help with comfort and sleeping, but maybe not the tachycardia and low blood pressure. I will have to check out the Therma-tabs...thanks for the tip! That sounds much nicer than loading everything with salt and taking away the natural flavor!

To answer your questions Angela, I realize I wasn't clear on the BPM. The 250bpm was the highest it got during the tilt table (and only lasted a minute or two). I mostly hung out in the 170-190 range during the test (which was 35 minutes in length). My resting heart rate is 51, my supine heart rate is in the 60's. Upon physical exertion, like lifting 20 lbs weights at the gym, is anywhere between 130-150. The highest I recorded getting it on my own during intense stair climbing with lots of elevation and stairs was 180. From what I know that does seem normal for sinus tachy, right? My blood pressure is typically 105/70. I have recorded it as low as 90/50. I don't know if it has gone lower than that or not. Does that give some better info?

Thanks everyone!

Lauren

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Hi Lauren,

yep, you sound like me! lol. normal for a sinus tach, but obviously, as we all know, not fun at all.....250 though, even for a minute or two, is still quite high for sinus - but as i said, i suppose it can happen. nothing is truly ever black and white in medicine! like, for example, the other night (i'm a cardiac tech) we had a patient come in who was in SVT (a true SVT, not sinus tach) and I showed her ekg to the doc - the doc said that she couldnt be in SVT because true SVT occurs at 150BPM and over and this woman was only at 145 BPM. it's basically all in how the rhythm starts and ends that classifies it as a sinus tachy or a "true" SVT (coming from an ectopic site in the heart)..............so yeah, generally we say SVT is from 150+, but because this woman hadnt hit 150 or over, the doc didnt believe it was true SVT, until he saw her rhythm convert! ;o)

Have you tried a low dose beta? I know for me (and i know everyone is different in how they respond to meds) but with my rates being so high, the one med that has helped the most is my beta blocker -- and that's all i take.....i'm probably not the typical pots patient though, so for you, you might need something different....just wondering if they had tried you on a beta?

take care,

Angela.

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hey,

I forgot to add before that i am on a beta-blocker, and it has been very helpful in lowering my heartrate because my heart rate gets very high, and it deffinetly makes a difference in reducing it. so that might be something goo to check out because mine is only 4.00 regularly priced(that is without insurence, it only costs like .80 with mine, but yours might be differenet) so with the money issues that could be good, because that is once month worths supply.

have a great night!

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Hi Lauren and welcome.

I don't have much info. on meds as I do not take any - just extra fluids. I did take a beta blocker (very low dose) when I was first diagnosed, but it lowered my resting heart rate too much...I see that yours is already low so a beta blocker probably wouldn't do for you.

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Hi Lauren,

Welcome to the forum. :( I'm glad you found the DINET site. You'll find helpful information here. Have you checked out the "What Helps" page? If you're looking for treatment options there are many listed there.

I, too, was a very active person before POTS. I used to swim competitively, hike, climb, rappel, babysit, and have endless energy. It was hard to ajust to life with POTS, but when we have to we manage to! Some people are even able to get back to a fairly normal life after treatment.

Yes, I also get a pressure feeling in my throat like it is being squeezed. I have never thought about it, though! I've had it for so long that I don't even know when it started. But, who knows? Maybe it is related to POTS!

I hope that you can find some helpful meds and treatment. And again, welcome!

Rachel

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Thanks Rachel! I have checked out the "what helps?" page and found some good suggestions.

I am sorry you can't be as active anymore, but it's nice to know I am not alone. It is hard, because I used to be very active just like you...and now a light hike (I mean 70 year olds pass me like it's nothing), or even doing laundry gets my heart rate up and makes me lightheaded. We manage, but I would like to hopefully get back to a more active status one day.

LOL. Well I am glad to know I am not the only one with that feeling. I assume it is POTS related, I don't know what else it could be?! My thyroid's been checked and is fine, so I think maybe it's just one of those things?

Thanks for your help!

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Hi Lauren,

welcome to the group. Rachel has already pointed you in the direction of the "what helps" page which is full of information.

You asked earlier about antidepressants / SSRIs (selective serotonin reuptake inhibitors) for POTS. There has been some research showing a benefit from SSRIs in POTS patients and my cardiologist told me it was due to their action of the cardiovascular system, not in treating "depression" in us POTSies. (I suspect that quite a few POTS patients are clinically depressed because of chronic symptoms but that doesn't appear to be the specific mechanism that helps with the dizziness etc).

Some of us (such as Mary/llopyllama) are taking other types of antidepressants for other indications such as pain and sleep problems. Whilst they can be very useful for treating those symptoms, I'm not aware of any research showing a direct benefit for POTS symptoms.

I hope that makes sense and didn't muddle you up - just ask if I've caused confusion (It's late here in the UK and I an probably not functioning at my best right now).

Flop

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