Do I really have POTS?

[HHairmanic]

Hi everybody,

I've only posted once on here before, after my initial diagnosis of POTS. I explained about the recent death of my sister, and how that shortly thereafter, I began waking up at night with racing heart. I recently wore a cardiac event monitor, and did a stress echo test. The stress echo was normal with only one PVC prior to excercise and normal sinus tach at 180bpm while on treadmill for 8 mins. I do at times feel light headed after bending over to pick something up, and I also am dizzy ALL THE TIME! My normal B/P is usually 100/60. and sometimes 90/50 while lying down, 100/60 or 110/60 when standing. When I have the tachy episodes at night I feel like a sudden surge of adrenaline from the top of my head to the bottom of my feet, and then bam !! it's off to the races. with HR of up to 198 bpm. The event monitor showed this as normal sinus tachycardia. My B/P goes up to about 150/90. I do feel really shaky the next day, just like now, It happened again at 4am this morn, and needless to say Its been a really bad day. It also seems worse in the am after sleeping, which lately has been very interrupted, I awake afraid of a racing heart even when It's not happening. I've wondered about sleep apnea because when I lie on my back it seems I wake more often with SOB, and fast heart, sometimes gasping for air. I also , at times, get tachy after a full meal, sometimes about 100-115 for about 30 min. I'am soooo confused about what is going on with me. I haven't had a TTT or anything, because my cardio doc said not necessary, He was 99% sure it was POTS. He wants me to take Proamitine and Toprol XL 25mg, but I'am really scared of meds, (always have been). Should I take a BB with a low B/P like mine with at times, a resting HR of 55-60? Has anyone taken Proamitine?

Thanks for any advice you can give, I know you cannot diagnose me, but it sure would help knowing if others suffer with these same symptoms, and is this anxiety related to the death of my sister, not to mention the recent diagnosis of my brother, with lung CA, and given 6mos-1yr to live. I come from a very close nit family so this is HUGE for us.

Thanks Again,

Terri Lynn

[Poohbear]

Well, it sounds like you have symptoms that fit with Dysautonomia. The problem is they are symptoms of so many other things as well.

I didn't get to read your previous post (I've been quite overwhelmed and feeling poorly myself lately). Had you had any symptoms prior to the death of your sister?

It may be that you had the disorder "dormant" and then the stress of losing your sister "kicked it in". Maybe, trying the meds is a good idea; if you can get some control of symptoms and get some rest then your body may return to it's baseline prior to the death of your sister.

There is so little known about what causes Dysautonomia and why in some families some siblings never have any signs, others have signs from birth, others can outgrow their syncopal episodes and yet others never have a problem until later in life. Some people seem to have no genetic basis at all.

If I were in your shoes I would "want" a tilt test done. I've learned over time that though they are sometimes unpleasant they really do offer valuable information about how your body is reacting.

Perhaps you would feel more comfortable getting a second opinion?

The beta blocker is worth trying. I have a heart rate that is all over the map and what I've found for me, is that on days when my heart rate is good I take less bb; on days when I'm extremely tachy I take the prescribed dose or even a little higher of a dose (it takes time to figure out what your body needs and when). I did try Proamitine and it did nothing good for me.

I would encourage you to try the meds. It's really the only way to decide what helps and what to avoid. I would talk to your Dr about starting out at very small doses and start only one med at a time (so you will know what side effects to each med you are having).

Good luck and Welcome to the site as well since I don't think I got to formally say "Welcome" earlier

[Jacquie802]

Hi, welcome to the board!!! The symptoms you described could be anxiety, POTS, etc... I agree with Poohbear and think you should get a second opinion as well as a Tilt Table. Atleast that way you can have some test results to work with. I too suffer from hypotension and I am on Toprol XL 25mg which has been increased to 36.5. The low dose doesnt seem to control my arrhythmia as much as I or the doctors would like it to though. I do feel dizzy alot but I also have ear problems as well at POTS so the beta blocker just further aggravates it. I try to drink alot of water throughout the day, I really think water is the best thing to help low bp. Salt seems to work for ppl under the supervision of a MD of course, but that bothers my ear problems for the time being. Keep us updated as to what comes along.....

[Lukkychrm42]

I agree- it sounds like your symptoms fit with POTS, and while the TTT isn't perfect, it's pretty much the gold standard in diagnosing it. If I were you, I'd want one for security, especially if your doctor is prescribing meds for you. On the other hand, if your doc is one of the few well-versed specialists, he could probably tell a dysautonomiac from a mile away...

I've never been fond of having to take medicine.. but I've been doing it all my life. Amoxicillin was a staple in our refrigerator from when I was 2 weeks old (doctor's orders for my incessant ear infections). You'll find a lot of us here on Midodrine or Pro-Amatine (brand name). It's possible that your doctor prescribed it for you to counter the effects of a BB on your BP. I have low BP except when I stand up sometimes, then it goes high. I'm not saying that medicine is the way to go, for some of us it's not. But for me, BBs are amazing.

Good luck!

[Gena]

Hi there and welcome! I agree with everyone else. Your symptoms sound very POTS like, but worth getting the TTT. Although, I must tell you that I was so filled with anxiety during my TTT that my heart rate and BP stayed elevated before and during the test, so my TTT actually did not indicate POTS. However, I've had a POTS dx confirmed by Mayo and the Dysatuonomia center at Birmingham.

Your symptoms sound almost exactly like mine, except my BP can run much lower. My POTS, I believe was mainly triggered by a job offer and stress of moving across country away from friends and family. Although I've had on and off POTs like symptoms since getting dx'd with celiac several years ago, I got full blown POTS when I came under stress from the possibiltity of changing everything in my life. I did not go through with the job or the move because I became so ill with POTs that I couldn't do anything at the time.

I imagine all of the stress from your sister's death and your brother's illness helped to trigger full-blown symptoms. Anxiety can also be a normal part of the POTS syndrome for many of us...I never had anxiety problems before POTS.

I take 1/2 of a .25 mg Klonopin at night to help me sleep. When we have attacks at night, it can make us afraid of going to sleep or waking up during the night. Eventually you get past this though!

I was recently prescribed .25 Toprol XL also. It made my HR and BP too low. I was really hoping it would help with arrythmias but it didn't. Later I was prescribe Proamitine (midodrine) by my cardio at Mayo. It did nothing for me, even when I upped the dosage. Now I have not tried the two meds together, which many doctors do prescribe them together to counterbalance the BB effect of making your BP too low. I do not like taking meds either, but sometimes I get desperate enough to do so!

It's really in your best interest to try the meds, because you could regain your quality of life. If the anxiety is adding to your symptoms, then you may want to ask your doctor about taking Klonopin or xanax on a temporary basis or even a natrual herbal supplement to calm your nervous system.

Best wishes to you!

Gena

[Ernie]

Hi,

I agree with the others: try the meds and ask for a TTT.

[mom4cem]

I have to agree with all the prior posters. You have had a lot going on, it certainly is possible that this was the trigger for you and set it all in motion. Mine started after an illness. The medications certainly would be worth a shot, if they do not agree with you, you can always stop or try something else. Especially with what you are going through with your family, you need some help to get you through.

I was dxd in the Autonomic Center in Alabama and my tests were blunted, but they said I had dysautonomia. It has waxed and waned over the years, lately it's been hanging on big time!

Welcome to the board and sending you hugs and much support for all that you are going through.

[HHairmanic]

Thanks to all who replied,

I really appreciated the support. This diagnosis, on top of everything else, has been horrible for me. I keep trying to remind myself that it could always be worse, and I need to be thankful that it is not. I just wanted to go back to work and finish my schooling (I'm in classes working towards a bachelors degree in nursing. And it seems that all of that has come to a halt. In a way I feel as if I brought this on myself to an extent. I couldn't control my sisters death nor the health of my brother, but I could have controlled the pace at which I was working 40-50hr per week and going to school full time(wouldn't settle for anything less than perfect grades), then raising my two kids ages 4yo and 7yo and trying to be a good wife and mother all the while trying to make everybody happy. I think I put my body into overdrive!!!! It said"if you won't stop this , then I will" and boy did it ever! Anyway I think I'm just really getting depressed over this and I appreciate the encouragement. Maybe I'll try the meds. I'll probably be asking you all alot of questions so please bear with me.

Thanks again,

Terri Lynn

[briarrose]

Welcome & Ditto to what everyone else said.

I have tachycardia with an extremely low blood pressure. I had to try a few different beta blockers before I found the right one for me. A beta blocker is important to control the tachycardia and it helps with any arrhythmias you might have too.

My cardiologist in town didn't want to do a TTT on me but I insisted. Several of my other doctor's wouldn't even listen to what I had to say if I didn't get a TTT because they didn't really know anything about POTS. And while my Cardiologist here believed that it wasn't necessary because it was quite clear to him, I insisted so that I would have the evidence to be taken seriously. So I had the Tilt and of course it was positive and there isn't any question in anyones mind, I have POTS.

I think you should try what your doctor suggested and if you have any problems he can discontinue or change your medications to something that will help you. If you can control the heart rate and blood pressure, maybe it will help you get a good nights rest.

Take care

Steph