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ironsc
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Heylo,

I just wanted to introduce myself - I didn't see a specific forum for introductions, so I put it here. I?ve been reading these forums since March 2008, when trying to keep up with what my doctors were thinking and discussing. Now that I?m mostly over a short fatigue/mindfog flare-up that lasted a couple months, I was able to remember these forums and join.

My name is Cameron (guy, 27), and I live in the beautiful foothills of Lakewood, Colorado, snuggled right next to the Rocky Mountains.

I was diagnosed with POTS this May after having numerous severe cardiac and neurological symptoms in February (only made worse by a sudden Influenza Type A infection during the diagnosis process) that caused me to put everything on halt. I ended up seeing five doctors countless times from March to May to get a diagnosis (PCP -> Neuro -> Cardio -> Cardio EP -> (first) Neuro -> ANS Neuro). It certainly was a very interesting experience, and I?m thankful there was a person locally that has a full Autonomic Testing Lab and specializes in the Autonomic Nervous System.

At one point in my progression through the ordeal, the cardiologist wanted to have me immediately hospitalized and have a pacemaker installed after looking at my Holter monitor. He thought I had two Ventricular Tachycardia?s @201bpm, but the Cardio EP said they were Atrial Tachycardia?s with Aberrant Conduction. The Neurologist wanted me to also be hospitalized because my legs/feet were literally ice cold (and purple), my pupils were overtly uneven, and my blood pressure changed wildly quite frequently, and I was itching all over with pain.

In the end, I was introduced to Dr. Poscine, a neurologist that recently moved her practice to Denver (Luthern) and had a full Autonomic Testing Lab built on the Luthern medical campus. One of only sixty in the world, I believe. Since Mayo/Vanderbilt declined me, finding her was a lifesaver. And she was local!

On my first visit to her, she took my HR while lying down (ye olde wrist/watch method) which was 75. She then told me to stand when I was ready, and so I did. She still had her fingers on my wrist when I stood, and my HR immediately sky rocketed, as usual. I could see her try to count and keep time, but after about 10 seconds, she let go of my wrist and said, ?Ok, your heart is going nuts. Sit down, you definitely have POTS. I?ll order a Tilt Table test just to be complete, but you definitely have it.?

During the Tilt Table test, I had a HR of 70-75 lying down. When Dr. Poscine arrived to oversee the test, they tilted me upwards. My HR immediately fluctuated between 140-160 while upright and stayed that way for the five minutes I was up, while I casually called out my symptoms (lightheaded, partial blindness, pain in back of lower leg moving towards knee, then towards thigh, pain in back). She then immediately stopped the test when I said I was having pain in my back and in the back of my upper leg. I mentioned to her that this was worst case, because I was unable to move while on the table.

End result is that she officially told me I had POTS, and that she wanted to start me on a dosage of about 240mg to 300mg of Propranolol, a beta blocker, (titrating it upwards to that amount at about 10mg/week). She?ll probably want me to start other things, once that gets sorted out and done.

Right now, on 70mg of the beta blocker, I?m at 65 bpm sitting/laying, and 120-150bpm standing. And my BP is usually 110-120/70-80, rather than my old numbers of about 130-140/90-100. Unfortunately, I experience more presyncopial episodes when standing on the beta blockers, but she said she doesn?t care what happens when I?m standing (since I?m not supposed to be, except to take 5 minute walk for exercise a day), so long as I?m not having that happen when sitting/laying. But I?m not one to stay sedentary, anyway. I just have to avoid the heat/sun, or she?ll yell my ear off. At least that beta blocker is keeping my migraines in check.

I think the oddest thing about this whole ordeal is that my doctor said, while giving me the diagnosis, that this was a disability. I never really felt that way. Granted, I tend to need a seat quite often, but I always feel guilty whenever they mention that fact. I just don?t ?feel? disabled? just sleepy, heh. I suppose that?s just my stubbornness.

I?ve been apparently living with this for 14 years (had many negative experiences with oddball doctors until now) and she thinks it?s the reason I have Organic/Acute Heart Disease ? POTS left untreated at this severity (cardiac-wise), it permanently damaged my heart. But I think the worst of it is that every lady I?ve tried to date takes one look at my cane, and ends up disappearing off the face of the earth or ends the dating thing. I try not to be cynical about it, but it really does bug me. However, I saw a thread here about many other?s success, so there?s hope. I didn?t want to taint that thread with my negative experiences, however. It?s hard to get into the dating scene when you don?t have anyone local to introduce you to others.

I?m still going through a lot of testing, but at least they?ve started to find answers. They still suspect Chronic Fatigue Syndrome, Fibromyalgia, some kind of GI issue beyond POTS (GERD/IBS), and some kind of connective tissue disorder (Marfan?s, EDS type III, or Hypermobility Syndrome).

Thanks for the help back in March with your wonderfully informed posts and discussions, too. You really helped give me hope and ideas to share with my doctors at that time, and I hope I can contribute for others, as many here did for me.

Thanks,

Cam

p.s. Buggerit to my "no-sugar" diet. I won't give up cupcakes and cookies, durn it! :P

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Welcome Cam!

Sorry to hear you've been through so much! It's nice of you to post your story, though - I always find it helpful to read others' experiences. It sounds like you have POTS but not OH, is that so? That's the case for me, and I had a very hard time getting diagnosed, since my bp didn't drop during table-tilts. I'm glad you found a doctor who knows what she is doing!!

I've visited Colorado (eagle) a few times and I'm jealous that you live out there - what a beautiful place!!

jump

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It sounds like you have POTS but not OH, is that so?

Apparently, yes. My BP has dropped by as much as 30/15, but sometimes it goes up by as much as 30/15. The only constant is my HR - it always goes up by about 70-80pts.

My BP is all over the place. One day, it'll be 160/110, the next... 100/65. Lately, on the beta blockers, it's been stable at 120/80, which is beautiful.

I never understood why I have all the symptoms of POTS' blood pooling, but never the consistant drop in BP. One of my most complained about symptom while walking around is swelling of hands/feet to the point where they feel like splitting open, which most definitely is the pooling, but still... BP is usually stable, or only lowers by a small amount (like 20/10).

It's something for me to ask my ANS Neuro next week. *makes sticky note*

Hugs,

Cam

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Hi,

Welcome! I am glad it sounds like you found knowlegeable care relatively quickly and have found some answers. I noticed though the increase in HR, increased presyncopal episodes, and being told to not stand up and walk around.

In particular the being told to not move around worries me, depending on what else is going on, and what her train of thought is that sounds very risky. Many (most) of us are told to move around as much as possible etc. and exercise to keep up muscle tone in the legs and to help pump blood back to the heart, among many other things. I wonder why it sounds like you are such stringent "bed rest"? Is it something that over time she is hoping to continously work you up to more time up? Do you do leg exercises etc. supine or sitting to keep muscle tone?

Hope you continue to find answers and relief of symptoms!

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I wonder why it sounds like you are such stringent "bed rest"?

She said I should only sit/lay most of the time, except that she wants me to take 5 minute walks to keep the muscle tone in my legs. I'm supposed to do this a couple times a day. I usually just walk a mile every day, when the sun is hiding behind the mountains.

I used to bike ride up to 10 miles a day, five times a week in 2007, until I ended up collapsing on the ground and my left leg was numb and immobile for a couple hours. Also had pain shoot up my left side from my leg, up into my left arm and I was completely breathless - felt like I was going to suffocate. But I was too stubborn to go to the hospital, and just toughed it out and went to class. :P After that, I became more and more exercise intolerant, until February... when I couldn't exercise at all.

So, my legs are very well-off, and she mentioned she just wants to make certain I don't atrophy. She said nothing but short walks, no sugar, no caffine, no hot showers, no sun, no standing up for long periods, lots of water and salt, five small meals a day, and a lot of other stuff I forgot. And here I am, walking a mile a day, baking and eatting home-made cakes and drinking home-made tea. She's going to smack me next week.

But, honestly, I feel fine walking that much. Sure, I'm tired and worn out after, but it helps. As long as I'm not building muscle (increasing potential pooling places), and just toning what I have, then it's worth it. Plus, the beta blockers are making me gain weight faster than usual, and I'd like to stay where I am - I'm comfortable at 6'2" and 180lbs.

Best wishes,

Cam

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Is this just her temporary plan for you? (all of that rest) I could understand if she felt you needed recovery time, but most of us are encouraged to do as much as we can, as long as we know our limits. If walking that much only makes you feel a bit worn out and you can recover from it, I'm not sure why that is a bad thing. Maybe something to ask? Unless it's more than just POTS, I'm very confused as to why she wants you to rest so much!

Meg

PS-Welcome!

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Is this just her temporary plan for you? (all of that rest)

I hope so, because I really have no intention of staying still.

I think it might be temporary, until my standing HR isn't so high. According to my Holter monitor report, when I go on my mile walks, my HR is in the 180's. So it's probably temporary until the beta blockers get to helpful levels. I'll ask her for more details about her treatment plan for me - I tend to be incredibly absent-minded and never ask what I should at the doctors. :)

Thanks for the welcome!

Cam

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Your story sounds very similar to mine Cameron, especially the timeline. My troubles started in February as well.

Well, actually, in hindsight, I'm thinking it really all started several years ago with a really bad virus. I had searing back pain, was incredibly weak. I went to an urgent treatment center (bad idea); they did nothing for me, just declared it "a virus." My vision went bad; it was like someone dimmed the lights. A couple months later, after trying to suck it up and continue my work as a teacher, I finally went to see my general practitioner because my fever was so bad. I had pneumonia.

Fast forward a few years, and this past February, working as a teacher at a different school, stressed out, still having GERD symptoms that had been going on since way before the pneumonia, I woke up feeling sick. I got dressed, fully intending on going in to work anyway. I made it to my mom's apartment and fell to the couch, not to move again until I went in to the doctor. From the doctor's office, I was granted a ride to the emergency room courtesy an ambulance, with a heart rate approaching 200 bpm. They did a bunch of tests, found nothing, sent me home with an antibiotic. I returned to my very stressful (for me, at least) job as a teacher (takes me a while to learn my lesson). Less than a month later, I drove myself to the ER after waking up with that awful feeling of hearing my heart racing in my ears. It was only (ha, only!, funny how I think nothing of it now) around 160 that time.

Since then, I've had doctors brush me off as simply suffering from anxiety, which I do, but there's also something else going on, and finally, recently, a cardiologist mentioned POTS. Thank goodness for that ER doc who treated me kindly and referred me to a cardiologist.

Since then, I've been prescribed a low dose of a beta blocker, along with increased fluid and salt intake. I try to be easier with myself and take it easy.

I'm glad that I've found this forum, as it's really helped me feel supported and not so alone.

Thanks for starting the thread, Cameron.

I hope you find someone who looks beyond the physical/superficial soon.

I've been in a relationship while going through the confusion of poor health and struggling to find the correct diagnosis. We've been through hard times because of my illness, but it's been good to have someone who cares.

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  • 8 months later...

Cameron in Lakewood Colorado,

I just came across your post. I live in Centennial, Colorado and got a POTS diagnosis a few years ago from a local cardiologist and PCP. But they are not POTS experts and I'd LOVE to go see someone more familiar to help me. I tried to look up the Dr. Poscine at Lutheran Hospital in Denver you mentioned, but had no luck. Please email me the name/hopsital of this doctor and tell me how it's going and how you like him/her?

Carol

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Hi Cameron,

And Welcome. I am glad to hear that you are feeling a little better, have found someone who has a treatment plan for you, and have decided to join the forum. I hope that you will find a lot of suggestions and support here.... who knows, maybe even a good recipe for cupcakes :rolleyes:!

I am impressed by your positive attitude and motivation. As far as your comment on relationships, I hope that you will find someone who can look past your physical condition. You seem to have a good sense of humor and outlook on life. I am your age and female, and I can assure you that there are women out there you are able to do just that. Having dysautonomia has made any type of close social or romantic relationship impossible in my life right now, but what I think is that if I am ever well enough to have a romantic relationship, I would probably relate best to a man whose life has also been drastically changed by a medical condition or other situation just because dysautonomia and its daily consequences are very difficult for others to understand. Perhaps you will find the same.

Anyways, wWelcome aboard again and I look forward to seeing you involved in posts.

~ Broken_Shell :)

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Heylo,

I just wanted to introduce myself - I didn't see a specific forum for introductions, so I put it here. I?ve been reading these forums since March 2008, when trying to keep up with what my doctors were thinking and discussing. Now that I?m mostly over a short fatigue/mindfog flare-up that lasted a couple months, I was able to remember these forums and join.

My name is Cameron (guy, 27), and I live in the beautiful foothills of Lakewood, Colorado, snuggled right next to the Rocky Mountains.

I was diagnosed with POTS this May after having numerous severe cardiac and neurological symptoms in February (only made worse by a sudden Influenza Type A infection during the diagnosis process) that caused me to put everything on halt. I ended up seeing five doctors countless times from March to May to get a diagnosis (PCP -> Neuro -> Cardio -> Cardio EP -> (first) Neuro -> ANS Neuro). It certainly was a very interesting experience, and I?m thankful there was a person locally that has a full Autonomic Testing Lab and specializes in the Autonomic Nervous System.

At one point in my progression through the ordeal, the cardiologist wanted to have me immediately hospitalized and have a pacemaker installed after looking at my Holter monitor. He thought I had two Ventricular Tachycardia?s @201bpm, but the Cardio EP said they were Atrial Tachycardia?s with Aberrant Conduction. The Neurologist wanted me to also be hospitalized because my legs/feet were literally ice cold (and purple), my pupils were overtly uneven, and my blood pressure changed wildly quite frequently, and I was itching all over with pain.

In the end, I was introduced to Dr. Poscine, a neurologist that recently moved her practice to Denver (Luthern) and had a full Autonomic Testing Lab built on the Luthern medical campus. One of only sixty in the world, I believe. Since Mayo/Vanderbilt declined me, finding her was a lifesaver. And she was local!

On my first visit to her, she took my HR while lying down (ye olde wrist/watch method) which was 75. She then told me to stand when I was ready, and so I did. She still had her fingers on my wrist when I stood, and my HR immediately sky rocketed, as usual. I could see her try to count and keep time, but after about 10 seconds, she let go of my wrist and said, ?Ok, your heart is going nuts. Sit down, you definitely have POTS. I?ll order a Tilt Table test just to be complete, but you definitely have it.?

During the Tilt Table test, I had a HR of 70-75 lying down. When Dr. Poscine arrived to oversee the test, they tilted me upwards. My HR immediately fluctuated between 140-160 while upright and stayed that way for the five minutes I was up, while I casually called out my symptoms (lightheaded, partial blindness, pain in back of lower leg moving towards knee, then towards thigh, pain in back). She then immediately stopped the test when I said I was having pain in my back and in the back of my upper leg. I mentioned to her that this was worst case, because I was unable to move while on the table.

End result is that she officially told me I had POTS, and that she wanted to start me on a dosage of about 240mg to 300mg of Propranolol, a beta blocker, (titrating it upwards to that amount at about 10mg/week). She?ll probably want me to start other things, once that gets sorted out and done.

Right now, on 70mg of the beta blocker, I?m at 65 bpm sitting/laying, and 120-150bpm standing. And my BP is usually 110-120/70-80, rather than my old numbers of about 130-140/90-100. Unfortunately, I experience more presyncopial episodes when standing on the beta blockers, but she said she doesn?t care what happens when I?m standing (since I?m not supposed to be, except to take 5 minute walk for exercise a day), so long as I?m not having that happen when sitting/laying. But I?m not one to stay sedentary, anyway. I just have to avoid the heat/sun, or she?ll yell my ear off. At least that beta blocker is keeping my migraines in check.

I think the oddest thing about this whole ordeal is that my doctor said, while giving me the diagnosis, that this was a disability. I never really felt that way. Granted, I tend to need a seat quite often, but I always feel guilty whenever they mention that fact. I just don?t ?feel? disabled? just sleepy, heh. I suppose that?s just my stubbornness.

I?ve been apparently living with this for 14 years (had many negative experiences with oddball doctors until now) and she thinks it?s the reason I have Organic/Acute Heart Disease ? POTS left untreated at this severity (cardiac-wise), it permanently damaged my heart. But I think the worst of it is that every lady I?ve tried to date takes one look at my cane, and ends up disappearing off the face of the earth or ends the dating thing. I try not to be cynical about it, but it really does bug me. However, I saw a thread here about many other?s success, so there?s hope. I didn?t want to taint that thread with my negative experiences, however. It?s hard to get into the dating scene when you don?t have anyone local to introduce you to others.

I?m still going through a lot of testing, but at least they?ve started to find answers. They still suspect Chronic Fatigue Syndrome, Fibromyalgia, some kind of GI issue beyond POTS (GERD/IBS), and some kind of connective tissue disorder (Marfan?s, EDS type III, or Hypermobility Syndrome).

Thanks for the help back in March with your wonderfully informed posts and discussions, too. You really helped give me hope and ideas to share with my doctors at that time, and I hope I can contribute for others, as many here did for me.

Thanks,

Cam

p.s. Buggerit to my "no-sugar" diet. I won't give up cupcakes and cookies, durn it! :rolleyes:

Cam, you sound like a sweetie. Any woman would be lucky to have such a sensitive sweet guy. I only wish I were younger! I'm 49 and having fibro/cfs and now dysautonomia, POTs dating is impossible. My husband left me partially due to the fact that he couldn't deal with my illnesses.

I'm sorry you have suffered. And any woman who would high tail it because they saw a guy walking with a cane isn't worth your effort. Shame on them!

My thoughts are with you.

Rene

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Welcome Cameron!

If you like cupcakes, then you are indeed a catch! Don't give up on the dating scene...House has a cane and he was voted as one of the top 10 sexiest doctors! :rolleyes:

Get a really cool cane topper, or get one painted like a Harley with flames and tell the ladies you have it because of a fight in a biker-bar and had to sell your bike to pay for the other poor sucker's medical bills! I am a huge advocate of match-makers and dating services (I found my own true love through one!) You could always tell an attractive girl that your heart is already broken and you need someone to "fix" it! We are suckers for that sort of thing! :)

Welcome to the largest pool of truly understanding, great-looking women!

May you find answers and perhaps love...

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