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Well, I Think I Am Another Pots Member


lotsicker
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Hello everyone and thank you for reading.

I am new (obviously) and am still undergoing testing. Let me give you the brief run down and you tell me what you think!

9/6/2008---woke up dizzy, sick, extreme heart pounding, short of breath thought it was the flu

9/12/2008---went to family DR as I was not any better, ran blood work and she did BP, HR laying, sitting standing, BP stayed aroung 107/60 but HR was 62/99/110---Blood work all normal. She called it a virus and sent me home.

I stayed sick like this for 3 weeks, couldn't vaccum, go to the gym...nothing(basically feel like I am dying)Woke up one morning and knew immediately it was over, I felt fine. This went on 3 more times with the "sick" time lasting 2 to 3 weeks. By December I decided to see a Cardiologist. Did 24 hour Halter which revealed innapproriate sinus tack yet, not life threatening. Sent me to Rhuematologist and back to Family Dr for LOTS of blood work. All came back normal.

1/08/2009---stress test, ran on tread mill and pushed myself through it. HR did not go back down under 100 for 2 hours test revealed abnormal EKG yet no blockages.

1/09/2009---woke up and knew right away this episode had passed.

Throughout the next month, I had a few bad days but, it was when I had a cold or drank some wine with dinner.

2/15/2009---woke up 2am with rapid HR 115 and a bladder infection. The beginning of a new episode as all the symptoms gradually came back.

Cardiologist put me on 10mg beta-blocker twice a day and it helped ALOT

3/8/2009---at the gym and could get HR above 120 without pain, shortness of breathe returning and HR stays elevated even with beta-blocker on board

the next 2 weeks I get worse and worse yet the beta-bloacker still is helping, without it I feel like I am dying.

3/27/2009---Cardio Dr increasing beta to 40 mg daily as needed but, will not commit to POTS as I have rapid HR while lying down. She wants me to go back to Family Dr and ask if she has any ideas???? WHAT!!! She also wants a PFT and CT scan even though I only have shortness of breathe when my HR cannot be controlled. I KNOW ITS NOT MY LUNGS!

My insurance does not cover the MAYO and the only POTS drs in this state are there. My insurance will not cover a TTT either as it is considered "expieramental". I am seeing my family Dr tuesday and could use some advice as to what test I can have her run. PLEASE HELP ME< I KNOW THIS IS POTS

By the by, I believe this all came as a result of a C-section gone BAD with my twins. The spinal block did not take and I refused to be sedated or drugged as it might have endagered my babies. I felt every cut, tear, pull, push...it was horrible! But my babies were safe and did perfectly. I had a lot of blood loss, infection and extremely high BP for 2 weeks after. I feel I have never been the same since. DOB 6/06/2007

THANK YOU!!

Kimi

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3/27/2009---Cardio Dr increasing beta to 40 mg daily as needed but, will not commit to POTS as I have rapid HR while lying down.

Hi, welcome to the forum. :)

Currently my heart rate has been controlled pretty well on bisoprolol. Last year though, when I was taking propanalol, I had very high heart rates when laying down. Sometimes they were higher laying down than when I was sitting up. Not everyone with POTS is exactly the same. Some drs would say that a person can't have POTS if they have high bp, but many people here that have POTS have high bp instead of low bp. Hope your cardio will look into it more.

Candace

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Thank you, I have had the high HR while lying down since the beginning. The Beta was just started last month. It seems you can have high resting rate if you have over done it, drank alcohol, or are dehydrated. My cardio is sending me to her electro dr so thats something ...

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Hi Kimi,

Welcome to the forum, although I am sorry for what you have been through to get here. I hope that you will find a doctor that your insurance will cover who will be able to work with you. Do you have a means by which to appeal the insurance denial of coverage for an evaluation and physician office visits? I hope that you will find a lot of support and advice on the forum.

~ Broken_Shell :)

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Hello and Welcome!

It is interesting to hear someone present very similarly to the way I did at first. Intermittent bouts of tachycardia, tachycardia while lying down, pain with breathing... Do you get sharp pains in your back by your shoulder blade, too?

While my POTS was initially intermittent, it did finally come to stay. Hopefully you can avoid that with treatment sooner than later.

I have been diagnosed with POTS AND Inappropriate Sinus Tachycardia. The beta blocker, once they found the right one, was helpful.

I don't know what advice to offer regarding testing, but I do hope you get the help you need.

Angela

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whoa, I just have to say, that is really horribe about feeling the C-Section! similar thing happened to one of my sisters-in-law because the epi needle slipped out while transporting her for emergency C-Section, and she saw and felt everything...really, really bad. But she's such a strong person...she even had another baby after that!

If you need to pay out-of-pocket for a TTT, it's worth it. Health problems cost a lot more in the long run, if you cannot treat them early. I do not have insurance...and my TTT cost about $350...but honestly, it was soooo worth every penny. Without the TTT, I would have doubted the diagnosis when other things came up later on. But the TTT clearly showed 75% blood flow deficit to my brain after 20 minutes of upright posture. That is indisputable.

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My one comment about the ttt is that it isn't a standardized protocol. If you have any control, and esp if you have to pay yuorself, have it done at a place with experience treating ans disorders. I had it done at cleveland Clinic and it was a tolerable experience. If I'd had it done in champaign, I'm not sure... there they really only look for loss of consciousness and I've heard it's miserable. I know one woman who did it there and said that it was torture. Also, measuring blood flow to the brain is not something that is systematically done. Cleveland is one of the top places and they did not do this.

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Its so nice to talk to people that know what I am going through. :blink:

The insurance covers MOST drs but, there are only 2 POTS specialist and they are not contracted. There are several other Neuro drs on my plan, should I give them a shot? Also, the TTT is only approved if its for "fainting" diagnosis. I will check the Mayo clinic costs and maybe I will pay out of pocket.

ANGELA- I thought that the POTS caused the Tachycardia? The back and lung pain can vary from day to day. In the worse of an "episode" my entire upper torso feels like its been hit by a truck! As I rest and limit activities, it gets better and the pain levels also are an inticater of how bad my HR, breathing and BP are going to be that day. Today the pain isn't so bad and the HR and BP are better also. It feels like I am coming to the end of this Flair Up. They seem to last longer and longer and I hope this doesn't become just continual flair. At least i do get a couple of weeks where I can do things before it gets unbearable again.

Again, thank you all and by the by.....is low wieght and weight loss a common thing with potsies? Is this due to our HR always being high and burning calories?

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Again, thank you all and by the by.....is low wieght and weight loss a common thing with potsies? Is this due to our HR always being high and burning calories?

Kimi,

I'm not sure how common it is, but ever since I became sick after I turned 16 I have been underweight. I weighed more when I was 14 than I do now, and I am 20. Right now I only weigh about 97 lbs. I am 5'6". When I first became sick I lost about 20 lbs in 3 weeks. Not good, especially when I'm tiny to begin with. The worst I've been since I became sick was around 90 lbs. It doesn't really seem to matter how much I eat, I tend to stay under 100 lbs. When I was 14, ( freshman in high school ) I weighed almost 120 lbs ( healthy for my age and height ). I was very active and involved in 5 different sports. :blink: those were the good old days.

Candace

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Hi,

Welcome! I am not sure if I missed it in your info, but does your HR increase 30+ bpm upon standing? I know you mention a high supine HR, but even with that I think that your HR would have to increase 30+ bpm from supine to standing (or sit to stand). Otherwise it sounds more like IST or another condition causing increased HR. I might be mistaken, as I am not a dr. and the diagnostic criteria for all of these conditions can be confusing and vary place to place. But, from reading your background info I have to say (to me) you don't sound a lot like you fall under POTS criteria. But, it also maybe that you have other symptoms etc. not mentioned. Are you more symptomatic upon standing? Have dizziness/lightheadedness? Cognitive difficulties? Heart rates above 120? Feeling like going to pass out? Any gastro symptoms? Heat intolerance or becoming overheated with an increase of symptoms?

It is hard to tell from a post or two to what a person is going through. But, I just wanted to throw it out there that I (just me) am not sure from what you talked about that POTS may be the one and only answer. A TTT would be an important next step in finding out your response to an upright posture.

Good luck on finding answers!

:blink:

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Hi,

Welcome! I am not sure if I missed it in your info, but does your HR increase 30+ bpm upon standing? I know you mention a high supine HR, but even with that I think that your HR would have to increase 30+ bpm from supine to standing (or sit to stand). Otherwise it sounds more like IST or another condition causing increased HR.

I'm sorry, I should have been more specific. Standing, walking, lifting my babies, cleaning vaccuming...EVERYTHING but sitting and laying down get my heart racing, make me short of breath and very dizzy. The rapid HR while laying down has only occured after drinking or days I have REALLY pushed it, its not the normal for me. Yet, my Cardio thinks it shouldn't EVER happen with POTS.

As to the 30+ bpm....yes, from sitting to standing it goes up and stays up. However, as my regular HR is in the 50s and 60s, my highest is usually 100 to 110. It can pop up to over 120 with vaccuming or pushing babies in the stroller.

I have a constant felling of a SEVERE hang over and arthritis like pain in my fingers and back. Sharp shooting pain in my upper and lower back and around my heart on bad days.

I am ALWAYS cold, so cold sometimes that only a hot shower or electric blanket warms me up. As for heat, I do find that my heart races hard after a hot shower or spending to much time in the sun.

Cleaning blinds or stove hood, anything lifting my arms over my head brings me close to fainting.

GEEZ---I feel like I'm complaining :blink: Does all this sound like the classic symptoms??

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Hi,

Just wanted to say welcome, though so sorry for what you have been through that brought you here. (especially the C section! OUCH! I hope you find all the help and support here that you could need, like I have. Sorry I don't have any good advice....just wanted to welcome you.

Suzy

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Hello again,

I was diagnosed with IST at Cleveland Clinic, along with POTS, and the doc at Vanderbilt agreed. My HR stays high even lying down and I guess that aggravated my POTS. Now on the BB, the HR does still increase the 30 bpm upon sitting and standing, but it doesn't start out at 120 and go to 160 or so like it used to. Well, not much anyway.

Try to get rest and hopefully you'll get some treatment soon.

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Hi again!

After your further description I do understand better where you are coming from. :) Not that the extreme cold feeling doesn't match POTS symptoms, but it made me wonder if your thyroid has been fully checked out? I know that feeling cold all the time can be a thyroid thing. And no its not complaining- it's the just the truth! :)

Hope you are able to get more answers soon!

:)

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WELCOME and WOW I cannot get over the C section with NO anesthesia working??? YIKES!!! That alone would be so traumatic..your nervous system would be sooo affected.

Stay with us... as you learn. I am not sure about the whole POTS thingy either. My HR/BP goes whacky while sitting..and gets bad enough at times that I do not have to stand for the spacy..dizzy..going to pass out feeling occurs. It may or may not get worse when standing..but when its BAD.. I can no longer even STAND. They are still trying to figure me out.

just wanted to say HI... and offer you a BIG HUG!!

Jan

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I am not up to reading all the threads so I apologize if I'm repeating something someone else has already said.....

Regarding the TTT and your insurance claiming it is "experimental". If you feel you need the TTT and you believe you have POTS you can try sending your insurance company some information.

If you are interested, PM me and I will see if I can help you appeal that decision.

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I am not up to reading all the threads so I apologize if I'm repeating something someone else has already said.....

Regarding the TTT and your insurance claiming it is "experimental". If you feel you need the TTT and you believe you have POTS you can try sending your insurance company some information.

If you are interested, PM me and I will see if I can help you appeal that decision.

Oh thank you! I see my GP doc today. I plan on having her send in an appeal. The ins. will cover TTT for fainting eval. ONLY...so maybe she can submit it under that. I am SO sick of seeing doctors!

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WELCOME and WOW I cannot get over the C section with NO anesthesia working??? YIKES!!! That alone would be so traumatic..your nervous system would be sooo affected.

Stay with us... as you learn. I am not sure about the whole POTS thingy either. My HR/BP goes whacky while sitting..and gets bad enough at times that I do not have to stand for the spacy..dizzy..going to pass out feeling occurs. It may or may not get worse when standing..but when its BAD.. I can no longer even STAND. They are still trying to figure me out.

just wanted to say HI... and offer you a BIG HUG!!

Jan

Yes, it was pretty horrific. They kept doing to "pinch" test and I kept saying "I can feel that, its not working" I could move my legs...everything. After 45min. they finally said they had to procede, I was giving the option of a general but I didn't want to hurt the twins. With the first cut I nearly jumped off the table! They had to have someone lay on my legs! My OB was great and got them both out in 3 minutes after he got the insisions done. Once they were out and I could hear them cry I said"PUSH THE DRUGS!" It was worth knowing my babies were fine and the video my hubby took of me later in the room was priceless! Talk about having every narcotic known to man on board!

So sorry you have had YEARS of problems without a difinitive diagnosis. I hope you get answers also....

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