Will I ever be OK

I am new to this forum, and I am so glad that I found it. This is long, but a lot has happened in the past 10 years and I feel I will never get my life back.

I was diagnosed with POTS over 10 years ago, 3 years ago I finally saw an EP cardiologist and was diagnosed with Inapporpriate Sinus Tachacardia. I am 44, and I have had multiple episodes of passing out. I am always dizzy and tired. My heart rate stays between 100 and 120 just sitting at my desk at work. My heart is always pounding, and I have tried all of the meds that should slow my heart rate down.

I had my first ablation in Feb. of 2010, I did not get better. I had two more ablations in 2011. My sinus node was ablated and I was in junctional rhythm so a pacemaker was placed in Feb. 2011. My heart rate still never really slowed down.

This pacemaker did not cause a lot of probelms, mostly because my heart rate rarely dropped below 90, and it only kicked in 1% of the time.

I saw a specialist in POTS/IST Dr. Grubb in Toledo, and he needed to replace the pacemaker with a two lead pacemaker and do another ablation on my on my AV node to slow my heart and allow my pacemaker to do part of the work.

I think this was a good plan, but I had the pacemaker changed on Jan. 13, 2012. He did a venogram prior to the change and the blood flow was good.

On Thurs Feb. 8, 2012, my arm swelled up, changed colors and had severe pain. I was hospitalized and now I am on coumadin, with blood draws twice a week.

I feel like everything I try that may help me recover, just causes more problems. I do not have a good quality of life, I am tired, short of breath and my heart pounds. I love my job, I am a social worker in a large hospital, and I work with transplant patients. Last year I was off work about 12 weeks. This year I have already missed 2 weeks. Has anyone else experienced this many complications or treatment failures.

4 Comments

Fascinating

by Peg541 - 2012-02-14 01:02:00

Flash this is eye opening. I just read about POTS for one hour on Google and boy is it eye opening.

I am so sorry that this is affecting you so much. I have just gotten my pacemaker two weeks ago today and although I am recovered I have very little change in my symptoms.

I see the EP tomorrow and am very eager to have him interrogate the pacer again and see what has been going on all week. I am also frightened that he'll see nothing unusual.

Then what am I feeling here? My original cardiologist already thinks I am nuts.

One thing. My heart POUNDED while I was on Calcium Channel Blockers. We had to stop them. My heart also POUNDS when we try to stop or even taper down my beta blockers. Is that some information that could help you?

My pounding is SLOW not fast although I am now experiencing some tachy arrythmias this week that are very new for me.

This is all such a mystery.

So believe me I feel your pain and understand your situation. Please lets keep communicating maybe you'll find someone here with a similar story.

Let me ask you one question seemingly unrelated. Have you ever had big muscle pain after surgery or while taking statins? That is something that happens to me. I think it is related to something but the doctors usually are reluctant to tell me what. The pain is caused by muscle fasiculations (like tremors) brought on by a muscle relaxant they give you during surgery. I wonder if this is connected to my heart difficulties.

Sorry to derail this I hope this helps.

Peg

I am going to ask my EP about POTS tomorrow.

Thank you for the support

by Flash2010 - 2012-02-14 07:02:33

I really appreciate the supportive posts. It is good to know that I am not alone and sad to know that others are going through this.

Bloc thanks for your story. The more I go down this road the more that I believe that ablations do not really work. I can so relate to having conflicting reports depending on what specialist you talk to.

Peg I have never really experienced the muscle stuff you talked about, but I know that symptoms can be crazy, and they do not always fit the same mold. I hope that you are able to figure out what is going on. My heart pounds on or off meds. I am currently on Verapamil and lobatolol. It takes my resting heart rate down about 10 points, but not really under a hundred most of the time. I have kind of given up on meds really helping me.

Bella It sounds like your story is similar to mine. I have kind of given up hope that anything is going to help. I do have my good and bad days. Sometimes, I can barely get through work, but it is the one thing that makes me feel normal and I feel like I give to others. I think it will be devastating when or if I have to give it up. I am very careful at work, and I never get up quickly. I always try to sit when I am assessing patients. I have had several fainting episodes, but never at work thank God. I have looked at the dinet website, and it always has interesting info. I am supposed to have the ablation in three weeks, but it is going to be put on hold until the DVT clears up.

After 10 years of fighting for validation, I am trying not to give up. The first few years that I was diagnosed with POTS, most doctors did not really know what it was. I felt that no one took it seriously. I finally saw an EP cardiologist, and found some answers and validation, but so far the treatment is not helping. I normally try to be positive, but this DVT just kind of knocked me down. Thanks to all for listening and being supportive.

i feel your pain

by bloc_de_branche - 2012-02-14 11:02:54

hi Flash,
I totally hear you. i have read other peoples posts where getting their pacemaker has changed their lives, made them better, great quality of life etc and i am happy for them.
I have been having procedure after procedure (eblations too) and had my PM inserted in October 2010. I have had nothing but issues; blood clots, extended stay in the hospital, run around, issues, more tests, different opinions, complications, side effects...
I am constantly tired, I sleep like crap and cannot do as much as i did before. I am 36 and feel 50. My bosses are looking at me like wtf and want more work from me and I cannot deliver.

I hear your pain, I know that there are people out there on this site who can give you a cheer up speech, I am not one of those people today. Call is Valentines blues maybe. but my PM has been nothing but a bain and I wish they would take it out.

hope that you don't feel so alone :(

So Hard...

by jenny97 - 2012-02-15 10:02:53

Dear Flash,
I'm so sorry to hear of the troubles you've been going through. I can really relate to the sentiments. I've also been diagnosed with POTS and NCS about 12 years ago (when I was in my early 20s). And, as for you, it sometimes seems like everything I try just makes it all worse. Doctors do their thing, but they don't have to live with the side effects or the consequences of the treatments, so sometimes they are more willing to trade one issue for another than I am. Fortunately, I have gone through some good times along with the bad times, which makes the rough times a bit more bearable. I hope you hit a good spell soon.

The typical treatment for POTS is a beta blocker, midodrine, exercise (particularly lower leg - I use a recumbent stationary bike with a heart monitor, which I pedal as slowly as necessary to keep my heart rate below 180 - sometimes it's impossible, of course), increased sodium intake (in most cases - if not associated with high blood pressure), increased fluids. Also florinef can sometimes help. I hope you've been able to at least try out these options. For me, the beta blocker helped the most in getting my heart rate down (like Arabella, I can hit 150-180 at rest and go well over 200 with exertion at times). Unfortunately, it also dropped my blood pressure too low, which caused fainting also. Never a good thing. I was recently taken off the beta blocker and my bp has re-set at a more reasonable rate once I got through the withdrawal phase. My 70/30 bp just wasn't cutting it for me.

I am curious what evaluation they did after you had the clot. Did they determine if there was an underlying cause for the clotting or if it was just a result of the surgery? I have anticardiolipin antibodies and have been diagnosed with antiphospholipid syndrome (13 years ago) which seems to contribute to a lot of the symptoms that have recently been attributed to POTS/NCS. So treatment for APS seems to be helping me a bit. Knowing the underlying cause, if there is one, would also help you understand how long you should stay on coumadin. I'm a lifer and yes, the weekly tests are a pain. But once you get your levels a little more stable, you sometimes don't have to go as often. (I agree that it's hard to do, but I just got word yesterday that I can go 2 weeks without a test!!!)

Arabella's suggestion of dinet.org and other online support groups is a good one. I've found a lot of comfort in reading others' stories and getting ideas of different ways to cope.

Anyway, I don't know if any of this is helpful. I guess I really just want to say you are not alone. I hope you find answers, solutions, and solace as you are making your way through this crazy medical journey. I hope you have great drs who can make sense of the giant jigsaw and come up with a treatment plan that brings some relief and allows you to return to some level of normalcy.

I wish you all the best!

Jenny

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