New Here, Lots Of Questions About This

[RichardInAz]

I'm new here. God Bless anyone who has the time to read through this long post.

I'm a 32 year-old male 6' 152lb. I used to be in fairly good health and good physical shape up until one year ago when I fell apart.

In 2002 I came down with a viral illness and the next year I developed a thyroid problem called Hashimoto's thyroiditis with multi-nodular goiter. I started exercising like crazy in 2003 (to lose weight from being hypothyroid), and by March of 2007 I was in the best shape of my life. Then I fell apart.

Since March of 2007 I've had severe exercise intolerance and debilitating problems.

I've had extreme fluctuations in blood pressure that have gotten worse recently. I had to go to the mayo ER last month because my BP is normally 96/65 but it shot up to 210/105 and my pulse shot up to 160 for no apparent reason. ER doc said it was a sinus tachycardia and gave me a beta-blocker, then sent me home. It happened twice again and beta- blockers make me feel much worse after they wore off. My BP dives down to 85/45 and then way back up to 190/100. But this doesn?t happen too often. I've been hanging around 110/70 this week without any meds but my heart rate goes crazy when I stand up.

My heart rate increases by 60 to 80 beats per minute when I stand up (I can go from 60 to 140), then it comes back down to normal after I sit down. Strangely, when I'm standing.. if I maneuver my stomach muscles or breath the wrong way, I can go into either a tachycardia or bradycardia and get dizzy. Its like something below my heart area is quite messed up but no doc has been able to understand.

When I stand up I feel a rush of adrenaline and my abdomen bloats for a moment. I get very light headed and dizzy, I feel my heart pounding, it slows down, speeds up and seems to go up and down like this. I find myself pushing on my abdomen (where the pancreas is) for relief. People look at me like I?m crazy and the feeling of temporary fullness there is scary. It is that fullness feeling and heart pounding that stops me from exercising.

All the doctors comment on my aortic pulse in my abdomen. I even had an ultrasound of the aortic root because one doc thought I had an aneurysm but it was normal. They also did a carotid artery ultrasound at the same time, trying to figure out why I have brain fog, but it was also normal.

Some other problems I have:

Low testosterone (was treated with HRT but it made me feel MUCH worse).

MVP with slight regurgitation.

PSVT, which is a type of tachycardia I get but happens only once every 4 or 5 months - it is benign. It is caused by parasympathetic and sympathetic nervous misfiring, causing a short circuit in my heart (electrical loop). It can be fixed, but it doesn't bother me.

Extreme brain fog and dizziness - I am not myself anymore. I simply can't think clearly. I can only think clearly after I have been lying down for a long while.

Something is wrong with my eyes. Its difficult to focus and light bothers me a LOT. I am always squinting and my eyebrows are always low.. its strange. Also I have so many floaters that I cannot see a clear sky! I've looked into laser surgery (there's only one place in TX), but that's too new. Also my eyes are often bloodshot at night time. Another thing with my eyes.. I see white glowing stars for a second every once in awhile (but I always wonder.. don?t we all?).

I have extreme fatigue so bad that I?ve been bed ridden at times.

HORRIBLE anxiety and panic... first brought on by bp and hr going up (then I panic!). I can really flip my wig for no apparent reason.

Adrenaline rushes.. ANYTHING can set me off. Someone passing me on the highway, doorbell or phone ringing.. its like my adrenaline shoots off for no reason. My hands become ice cold and sweaty.

All my muscles are weak and twitchy. Difficult to explain but it makes me feel "on the edge". Tremor I guess is the right word. My doc commented on my eyelids twitching.

Costochondritis - left side of my sternum.. one of by ribs feels bruised and has for years.

Heat intolerance - heart rate goes up (I live in Phoenix though!)

Inability to sweat.

Gatroparesis (seems to be correlated with my thyroid dosing).

Stomach ulcers and GERD that requires 20mg Aciphex (been on it a year now).

Very strange spasms in my throat and stomach that I call "esphogeal spasms".. but I?ve never been diagnosed with it by a doctor. Doctors think this is just part of the GERD, but I know that is not true.

I have some skeletal / posture problems that seem to be caused by muscle mass that I have lost in the past year (30 lb!)

So far I have had the following tests, which were all negative:

1. Treadmill test: got up to 190 beats per minute and nearly passed out, heart rate wouldn't come down for an hour but EKG was good ? no strange beats or waveforms.

2. Ultrasound of aortic root, carotid artery and another artery in my neck. Clear.

3. Echocardiogram (several). Other than MVP with slight regurgitation, everything else was good.

4. EKG (lots of them). Always perfect, except for sinus tachycardia.

5. CT scans and x-rays of most of my entire body, and especially the adrenals (all clear).

6. LOTS (and I mean *LOTS*) of blood tests. So much blood was taken in the past 12 months that I doubt I have any blood left. No doc has ever checked my blood volume.

Sometimes my blood sugar is very low and sometimes it is high (think it has to do with testosterone replacement therapy, which I gave up).

Does it sound like I have OI, POTS, or similar? I realize since I'm a male it would be somewhat unusual. BUT.. they said the same thing about hashimoto's and I am certain I do have that (positive antibody test results).

Or more important I guess... if anything I described above does NOT sound like dysautomnia, please let me know!

Things that bother me the most:

1. Of course, the increase in heart rate and extreme blood pressure fluctuations. I honestly have had to crawl around my house on all fours like a dog at times, but that worst part is over. I?m able to walk now.

2. Brain fog and loss of vocabulary. I feel like only 25% of the person I used to be. I hope this is not permanent brain damage.

3. Exercise intolerance due to the pounding heart and bloating or pressure in my abdomen. Does anyone else get that?

4. Doctors who keep tell me that this is all in my head. I?m sure you?ve all heard that before.

Things I'm doing already:

1. Increasing water and salt.

2. Leg exercises for calves.

3. Trying not to sit in front of the computer for extended periods.

The beta-blocker seemed to have a rebound effect on me so I'm not taking that anymore.

One thing I?d like to know regarding exercising: is it better to walk on a treadmill and put up with the dizzy spells, or is it better to peddle on a recumbent bike?

Also can anyone recommend a good POTS doctor in the southwest?

I'm going to see my primary doctor on the 19th and he's open to the idea that I might have some kind of dysautomnia. He's not trained in this area, but he will order tests. Should I print out and bring anything in particular?

Thanks,

Richard

[lloppyllama]

Hello Richard,

To me many of the things you say sound like POTS...or dysautonomia. With this syndrome you can have pretty much just about anything happen to your body and my doctor will think its related to POTS some way or another...for me anyways.

So yes I do think that you sound like you have dysaut., so most likely all the problems you are having are from that.

I would have a Tilt Table Test (TTT) if I were you to find out once you get working with that doctor of yours who is consider dysautonomia.

As for your blood pressure and heart rate issues, those both sound like POTS to me. The adrenaline problems do as well. The brain fog and dizziness are both things that all of us here are far too familiar with, so yes I think that could be dysaut. Your eye problems all sound like dysuat. things to me as well...as I experience all of them. People with dysaut. also get anxious very easily. Heat intolerance, and inability to sweat properly are also things that go along with dysaut. In regards to gastropherisis and GERD...there are many people here with Dysaut. and both those two issues, so they do go hand in hand.

Now just becuase all these things do sounds like Dysuat. you dont know for sure that that is what you have...so treating yourself for it, could be harmful to your body if there is some other condition really going on. So I would look into the TTT.

However if you do end up getting a diagnosis of Dysaut. the "treatment" plan that you have put yourself on sounds like an excellent start. Some things I would recommend to you would be...really pushing your self on a daily basis to be as active as you can, and to live a "normal" lifestyle as much as possible...as difficult as it is. Continue to push salt and liquids as much as possible (Gatorade is great if you like it or can tolerate it...I buy the mix and then use about 2 times as much powder as they recommend). Perhaps some diet alterations to make your stomach more "normal" along with perhaps helping your esophagus regurgitation. You asked about the exercise; whether tread mill with dizziness or stationary bike is better. In my experience I would say whichever one you can handle more exercise on and get a better workout is best. If that means using a stationary bike so that you push yourself more, then do that. However if that is the case, once you do become more tolerant of exercise, I would start using a treadmill to do walking, because that does use more of your muscles in your body because you have to hold yourself up.

Best of luck with finding a diagnosis...I know what a struggle that can truly be!!!

If you have any questions on what I meant, or just on anything else you think I could help you with, feel free to PM me.

Mary

P.S. Rachel lives in Georgia I believe, so if she really likes her doctor then perhaps you could look into seeing him. That is a bit far though. I would perhaps make a post about doctors in the south...and see what you come up with, Good luck!

[Randi Free]

Richard,

I'm fairly new to this but what you describe sounds like it could be POTS. My 23 year old has the rapid heart rate and fluctuating bp. She also has her legs just give out with no wrning. This can last from a minute to 3 days with her unable to walk. She is going to have an EMG to test her muscle/nerve connection. She also had a positive tilt test.

Randi

[dsdmom]

You definitely need to be tested by an autonomic specialist - a tilt table test would be a good start, but there are other things they should test for. I believe I've seen some people post about Mayo in Phoenix as a place to get tested. Good luck!

[jump]

Hi Richard!

Welcome! Although sorry to hear you're in this boat as well.

I have POTS and I believe mine is related to both excessive exercise and hypothyroidism - or at least exacerbated by those two things, even if they weren't the root cause. So I related a lot to what you had to say.

When I went to my PCP with this, I brought several articles printed off this website and I also brought a detailed list of my symptoms and their severity and frequency. And I also brought a detailed list of all the symptoms I experienced for one week. It was a pain in the neck keeping track of EVERY symptom for a whole week, but it really helped my PCP see how much this was affecting my life on a day-to-day level. Also, being a doctor, she was more impressed by concrete numbers ("Your heart rate goes from 55 to 140??") than she was by descriptions (when I said "My heart races so much I can't stand up" she wasn't nearly as concerned as when she saw hard and fast numbers). I would recommend that you bring as much documentation as you think is relevant.

While you're waiting for the appointment, there's a lot of good things on this website you can try to alleviate symptoms. I find that taking magnesium and B-complex supplements, drinking a LOT of water and a lot of isotonic drinks (my favorite is coconut juice) and getting plenty of sleep really helps. I find mild exercise helps too, but I really couldn't do much until after I started taking medication that helped with the OI. I would say do as much exercise as you can without being ridiculously uncomfortable -- if the treadmill brings on episodes of symptoms, it might be best to try a milder form of exercise until you're feeling better.

Good luck! Let us know how the appointment goes.

Jump

[ajw4790]

Hi,

Welcome! I just pretty much wanted to echo what everyone else has said. I definitely can identify with many of the things you describe. But, many of these symptoms can be caused by a variety of reasons, so definitely try to find a dr. that can perform the appropriate tests and provide treatment accordingly. It can often take a while to go through all the motions, so try to not get too frustrated.

[Ernie]

Hi,

Welcome aboard.

I don't know why being a male makes a difference in the diagnosis. I have 3 brothers and they all faint and have been diagnosed with POTS + NCS.

I think you should see a dysautonomia specialist to get in depth testing and at minimum ask for a TTT.

[RichardInAz]

Hi,

Welcome aboard.

I don't know why being a male makes a difference in the diagnosis. I have 3 brothers and they all faint and have been diagnosed with POTS + NCS.

I think you should see a dysautonomia specialist to get in depth testing and at minimum ask for a TTT.

Thanks for all the replies so far. It is reassuring to hear that some men have this.

I'm afraid of the TTT I'm really afraid of having something like adrenaline injected into me. If they want to do that, I'm just not going to have it done. I don't want to describe how it feels to be loaded on adrenaline with a PSVT setting off at 300 beats per minute then getting injected with the max dose adenosine then electric cardioversion. Been there - not fun!!

After so many tests with ultrasounds, x rays, CT scans, blood tests, urine tests, spinal taps, swallowing radioactive pills, etc. I'd rather assume I have POTS or else who cares. But.. I might do a TTT if they don't require an injection. I just can't tollerate much more testing if you know what I mean.

I don't know what they would prove on a TTT that I don't already know. When I stand up, I go up at minimum 40 beats per minute (last night I went from 55 to 145) but my blood pressure does not drop! If anything, it goes way up. The problem is, this does not happen all the time. If I have done enough walking and drinking water then it only goes up about 20 or 30.

Thanks,

Richard

[ajw4790]

Hi,

You can have a TTT without any injections. I think many places this is about all they do, or would at least try it without first. If you have the reaction to standing that you described then I am not sure why they would do another TTT with any injections.

I had a TTT with no injection and had a positive test the first time.

A regular TTT is nothing to worry about, it is no different then daily life (at least for me).

Hope that helps!

[hollie]

I agree! Sounds like POTS. I got sick of tests and dr. all coming out negative. I went searching on the net like you and came across POTS info. I pushed to have a TTT and finally got some answers. I have every symptom you explained to one extent or another. I was only dx in Feb. and haven't quite found anything that is an easy answer to get rid of the symptoms. (I don't think there is one.) But at least I know what it is and can go from there!

Good luck and don't give up on the drs. Just go to another one if you don't get the help you need. I'm actually in the prossess of finding another too!

Hollie

[lloppyllama]

When I had my TTT they didn't even ask if I wanted the injection. They just did it without...so I don't think you have to worry about that.

You say you want to assume its POTS and not take the test....while that may be true and easier, I think you know how much doctors don't believe you already and if you just assume you have POTS I don't know how much help they will be without a confirmed test.

But its entirely up to you, thats just my thoughts on the matter.

Good luck,

Mary

[RichardInAz]

When I had my TTT they didn't even ask if I wanted the injection. They just did it without...so I don't think you have to worry about that.

You say you want to assume its POTS and not take the test....while that may be true and easier, I think you know how much doctors don't believe you already and if you just assume you have POTS I don't know how much help they will be without a confirmed test.

But its entirely up to you, thats just my thoughts on the matter.

Good luck,

Mary

Although I never want to see another doctor for the rest of my life, I do understand. Yes, it would be good to have a formal diagnosis. I will ask for a TTT on th 19th.

Richard

[HoudiniCat]

Richard ?

Sorry, posted this response to a different person's question yesterday - talk about brain fog. Anyway . . .

Sorry to hear you?ve been going thru this. I have most of the same symptoms you describe. I was dx?d with POTS a year and a half ago after I failed a TTT (after having all the tests you mention turn out fine). I was terrified to have this done for the same reasons you mention. One of my docs even said he knew what the results were going to be before they administered the test. Good news was that my HR shot way up right away w/o being injected ? if you can call that good news.

Unfortunately, the doc who dx?d me with POTS had only ever treated one patient with it and I didn?t feel comfortable with this. I bounced around to a number of docs before getting an appointment with one of the specialists listed on the Physicians List on this site. I usually brought them this article by Blair Grubb who is one of the leading authorities on POTS - http://www.medscape.com/viewarticle/522421_print

You may want to do a search on MVPS (mitral valve prolapse syndrome). I have MVP too and at first thought it might be MVPS. Actually, my POTS doc thinks this is all connected.

Hope you find out some answers soon. Hang in there.

[RichardInAz]

Richard ?

Sorry, posted this response to a different person's question yesterday - talk about brain fog. Anyway . . .

Sorry to hear you?ve been going thru this. I have most of the same symptoms you describe. I was dx?d with POTS a year and a half ago after I failed a TTT (after having all the tests you mention turn out fine). I was terrified to have this done for the same reasons you mention. One of my docs even said he knew what the results were going to be before they administered the test. Good news was that my HR shot way up right away w/o being injected ? if you can call that good news.

Unfortunately, the doc who dx?d me with POTS had only ever treated one patient with it and I didn?t feel comfortable with this. I bounced around to a number of docs before getting an appointment with one of the specialists listed on the Physicians List on this site. I usually brought them this article by Blair Grubb who is one of the leading authorities on POTS - http://www.medscape.com/viewarticle/522421_print

You may want to do a search on MVPS (mitral valve prolapse syndrome). I have MVP too and at first thought it might be MVPS. Actually, my POTS doc thinks this is all connected.

Hope you find out some answers soon. Hang in there.

If the doctor will agree, I'll have the TTT but if my heart rate doesn't go up then we'll just call it a loss (cause I sure can't have an injection).

It is interesting about MVP. I read about MVPS before finding this site. Although, my cardiologist said my MVP was improved over the previous echocardiogram. I read somewhere that MVP is caused from the heart shrinking or being too large and the valve doesn't fit properly. wonder if that is true.

I will print that POTS article and bring it with me Thursday.

Thanks!

Richard

[RichardInAz]

The doctor saw me today.

First the good news.... he had me lay on the table then sit up, then stand. He was listening to my heart with a stethoscope and was counting the beats. I went from 50 lying down to 120 standing up. He even mumbled some kind of obscenity in disbelief.

I printed that medscape article and he read through the entire visit, and even retained my copy. It seemed like a longer-than-usual visit.

He said, "you have this syndrome without a doubt!"

He wants me to see my electro-physiologist but he said likely the only thing they will recommend is a pace maker.

That's the bad news. A PACE MAKER!?? HOLY @#$!&, I DON'T WANT A PACE MAKER!

Is that really necessary? He tried to scare me with "you could go into SVT or have a heart attack".

Is that true!?!? I thought this whole thing was just somewhat benign and sort of self limiting.

I'd like everyone's advice on this matter. I think I can do fine with 2 litters of water, some salt and leg exercises. I would be very uncomfortable with a pace maker at age 32 if it's not needed. Just seems unnatural and a bit overboard.

[mkoven]

It sounds like you need to see someone with more experience. I've only heard of pacemakers for ans stuff when people's rates are too slow. Just make sure the electrophysiologist is knowledgeable. Otherwise (and I say this from experience), you may need to travel. I've been told I don't need a ttt if I fit the criteria just standing in the office. So I haven't signed up for one. A couple docs have pushed, but several others have said that it wouldn't tell us much more than what we already know-- in my case, my bp does wild and wacky things when I stand, and my heart rate doesn't compensate.

[JenniferInOhio]

Hi Richard,

I wouldn't worry about a pacemaker just yet. I think there are a few on the board here that have a pacemaker, but most don't. I would definitely see an EP - it sounds like this doctor wasn't very well versed in POTS.

[RichardInAz]

Hi Richard,

I wouldn't worry about a pacemaker just yet. I think there are a few on the board here that have a pacemaker, but most don't. I would definitely see an EP - it sounds like this doctor wasn't very well versed in POTS.

Right. I'm sure pacemakers have their uses and aren't as bad as I have imagined. No offence to anyone here but I will exhaust everything else first (as I'm sure the others here have done).

The "SVT / heart attack" comment was scary.. but we're all doing fine at 150 bpm here and there. I've been to 300 bpm with my PSVTs before.. although those are nowhere as dangerous as what this doctor was talking about.

I agree with both you and mkoven.. he didn't know much about POTS. But of course, neither do I. Just found out about this a couple weeks ago.

Thanks

[ajw4790]

Hi,

I agree with them, in trying to find an EP that understands POTS and related symptoms etc. My experience is a little different and I don't have the same cardiac history you have, but I have also been tried to be scared by multiple individuals who were not well versed in POTS that I would need or should have a pacemaker although it is not the case. It may come from the people saying this not understanding what exactly is malfunctioning and how to try to decrease symptoms. They have to look at the whole entire big picture and not just the snapshot put before them.

Not sure if that makes sense?

Good Luck!

[HoudiniCat]

Yes, you might have to travel to find a doc who is knowledgable about dysautonomia/POTS. Before I found one, docs had given me their three-step plan which was 1.) salt/water, then 2.) Florinef (steroid), then 3.) pacemaker. Not that that?s the end of the world but I wanted to exhaust every other possibility. After several scary months of waiting to see a POTS specialist, on my first visit he tells me that in most cases that a pacemaker will actually do more harm than good. With POTS, it?s the CNS (central nervous system) that?s out of whack ? not the heart. Your CNS is still going to ?malfunction? but with the pacemaker your heart cannot speed up/slow down to adjust and it just causes more problems. Ask if anyone sees a good doc in the AZ area (no docs currently listed on the Physician?s List here). There?s another good forum on ndrf.org ? maybe some recommendations there as well.

[Rachel]

Hi Richard,

Welcome to DINET.

It does sound like the virus you had could have messed things up with your autonomic nervous system and caused dysautonomia.

I'll echo what the others said about the pacemaker. They often don't help POTS patients, and then you're stuck with it even though it doesn't help. Definitely get a second opinion on that. There are certainly other treatment options to consider!

Have you checked out the physicians list? There isn't a doctor listed in Arizona, but perhaps there would be one in a nearby state. http://www.dinet.org/physicians.htm The Mayo clinic in Arizona that someone mentioned would probably be a good option too. You have a lot of symptoms, so a good team of doctors at Mayo could be very helpful in looking at the whole picture. Often we find that we need more than just one doctor because dysautonomia symptoms overlap specialities (neuro, cardio, gi, etc.). A good pcp is always very beneficial too.

I hope you can find the help you need. It can be hard to find a specialist/team of specialists to aid in our care, but once you do it is very helpful.

Rachel

[RichardInAz]

The Mayo clinic in Arizona that someone mentioned would probably be a good option too.

Thanks Rachel. I just had my last visit with the Scottsdale Mayo clinic yesterday. They were unable to help me yet I paid thousands out of pocket (my insurance doesn't work there). I always heard good stories about the mayo clinic, but I was unimpressed. I'll have another look at the doctor list here on dinet.

Richard

[Rachel]

I'm sorry to hear that it didn't go well. That can be so discouraging.

I hope you can still find a good doctor to see (and one that takes your insurance!!!).

Rachel

[Megan]

I know that each patient is different, but I was told that I was VERY unlikely to have a heart attack. (I don't know if age makes a difference, I'm 20) I would definitely get a second opinion before doing something that extreme.

Meg