New Member With Pots?

[Rylen]

Hi there. New member here, 28 M and live in Southern California. Where do I begin? About 3 1/2 months ago I had a really really bad chest pain, it lasted for about 30 minutes, I got scared and everything below my waist got tingly. I went to the ER where they performed an EKG and a Chest X-Ray, they told me it was GERD and Anxiety, when they told me the results, the tingling in my legs went away. They gave me Zantac for my GERD and I was let go. I was fine for the next 2 1/2 months and never even took my Zantac because I felt perfectly normal. Well fast forward to about 5 weeks ago when I started having chest discomforts all over my chest cavity, most of these pains were around my sternum, but I did have some in my lower ribs sometimes. I also noticed I was more tired than usual.

I went to my local Hospital to have a heart risk assessment done, they performed a Lipid Tests, an EKG, an Electrochardiogram, and an EBCT, everything came out fine again, I even got a 0 calcium score on my EBCT. My bad cholesterol (LDL) was high at 205 (160 now a month later), and my good cholesterol was low at around 30, they recommended a high fiber, low fat diet. I'm 5 ft 11 inches, and at the time of these tests I weighed 217 lbs altho about a week prior I was probably around 220 (currently weigh 197) since I put myself on a healthy diet as soon as my heart discomforts began. But my chest discomforts continued, these discomforts don't last very long, they typically last around 3-10 seconds, and go away for sometimes hours, only to come back again for 3-10 seconds.

As time progressed I noticed my pulse was getting very high as soon as I started walking, I searched and searched online, finally about a week ago, I discovered POTS on the internet, I thought to myself, "WOW is my Pulse jumping simply from standing" and sure enough it was, My pulse was going from around 80 BPM sitting down, to about 125 BPM after standing for a minute. After discovering this I went to my primary care physician to get some blood tests, I tested negative for anemia or thyroid problems, later that same day he gave me a B12 shot, and I have been taking "RAW" vitamin supplements that contain 400IU Vitamin D, 400mcg Folic Acid, and B12 100 mcg ever since. Since Sunday I've been going swimming 30-40 minutes every other day, in fact today I'm going to take some ankle weights in there to run in place, and also going to take some of those elastic resistance training things to work.

But my pulse continues to rise by 30-40 BPM just by standing up. I purchased a blood pressure cuff yesterday, and it looks like my blood pressure stays pretty normal regardless of laying down or standing up, i lay down for 10 minutes before taking readings, and stand for 10 minutes also before taking readings. I don't know where to go, dont know what to do. I made an appointment for the Mayo Clinic in Arizona, but upon further reading, it sounds like it's just going to be a waste of time, so maybe I should just look elsewhere. Where is the best place to go without having to wait 6-8 months? I feel like the earlier I get proper care, the better my chances are of getting better. I have a 1 year old girl, and my wife is 4 months pregnant, I pray every night that I don't get any worse.

[potsgirl]

Rylen,

First of all, welcome to the Forum! You'll find a lot of knowledgeable people here and support. I wanted to let you know about the Mayo Clinic...The one in Arizona no longer has specialists in autonomic dysfunction, they're all at the clinic in Rochester, MN. I was there last March, and I didn't have to wait too long for an appointment. They'd be of much more help there, with specialized testing. If you decide to go to MN, try for Dr. Brent Goodman. His schedule may be a little lighter because he just moved to the MN clinic from AZ last January, and he's great! (But we miss him here in AZ).

Cheers!

Jana

[EarthMother]

Welcome. I'm also in SoCal and have used my primary physician as well as cardiologist to get a diagnosis and monitor my condition. Most of our hospitals have facilities to do the tilt table test. If I recall there's a specialist at Loma Linda I saw once .... but that was more than a decade ago and I can't recall his name.

There are a lot of answers here on the boards, self help measures and maneuvers, medication options to discuss with your medical team and of course a tremendous amount of support and encouragement as you walk the healing path.

Deep Bow.

~EM

[Broken_Shell]

Hi Rylen,

Welcome to the forum. I am sorry to hear about your troubles, but I hope that you will find guidance and support here. Have you talked to your primary doctor about a referal for specific autonomic testing? Perhaps a tilt table test would confirm a diagnosis. Have you looked in electrophysiologists in your area? Are you experiencing other symptoms? If you search the archives, you will find that many of us have a large collection of debilitating symptoms. I hope that you find a good physician soon and get some answers so that you can get back to enjoying your family.

~ Broken_Shell

[Mrs. Burschman]

Hello! Welcome! Sorry you're here (in the most friendly way, of course!)

Amy

[ajw4790]

Welcome! Good luck with your appointment or finding another close by specialist!

[Rylen]

Thanks everyone. Luckily my other symptoms have not been too bad, sometimes I get that fluttering skin thing. Sometimes I get a tiny bit lightheaded, but not too bad. I do get tired, quickly, but I think that's to be expected when your heart is going 120+ BPM while walking. Like i said, my blood pressure doesn't change very much between sitting and standing. Thursday I was in the pool for a good 2 1/2 hours, my pulse was pretty normal, even with ankle weights on during swimming, and even during the elastic resistance training in there.

Is there any reason why you have to be having symptoms for 3 months in order for a diagnosis of POTS? Does it sometimes go away on it's own? Even Vanderbilt mentions something to that extent, but I've never read of any cases in which POTS just goes away.

http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4788

Long-Term Outlook for Patients

The majority of patients with OI have a relatively mild disorder which improves over succeeding weeks and months. Most patients will eventually be free of symptoms. However, in some patients, the symptoms are more severe, the duration of the illness may be longer, and the expected recovery may not occur.

[iheartcats]

Were you really ill anytime in the previous few months before symptoms started? My POTS started a couple months after a super severe flu (that I've traced it back to, anyway).

Does anything run in your family that you know of?

I'm more stable on meds - I was doing bad before my Beta Blocker (and I just have to take a low dose to make life more bearable) so it's probably worth you seeing a specialist.

Stanford has a POTS specialist I'm seeing in November (she's about 2-3 months out for appointments). It's worth booking an appointment (as long as you remember to cancel if you don't want to go). She's on the list on the DINET home page.

My first symptoms I noticed were high heart rates for no reason when walking around, having to pee all the time and I wasn't pregnant!, and some dizziness. Now my symptoms vary and my allergies are worse - POTS is bizarre like that, I feel, because the ANS system gets messed up.

I hope you can find some answers here. The first thing I did was increase salt intake and drink more G2. That helped a bit. I think the biggest thing it helped was lessen the dizziness and fatigue.

I have similar blood pressure like you - mine can run a little low and I take Midodrine to bump it up to normal because of the Beta Blocker. But I think my Midodrine helps constrict my blood vessels more than anything.

[Rylen]

Were you really ill anytime in the previous few months before symptoms started? My POTS started a couple months after a super severe flu (that I've traced it back to, anyway).

Does anything run in your family that you know of?

I don't recall being sick. Unless the discomforts in my chest cavity that begain 5-6 weeks ago was some sort of virus. And as my chest discomforts got better, that's when I started noticing the orthostatic tachycardia. Heck, just 3 weeks ago I recall working vigorously on the job for a good hour perhaps, and not getting tired.

And about 2 weeks ago I had a very very minor sore throat, kind of like a feeling of phlem stuck towards the back of the throat, and I also had a tiny tiny bit of post nasal drip. At the time I thought It was GERD related.

Does anything run in my family? Not that I know of.

[Rylen]

Small Update.

A month ago when I posted this my pulse was going up over 120 every time I stood up. Now on my very worst days, when I stand my pulse goes up to 115, on bad days it goes up to 105, in the last 3-4 weeks, I've had many many readings where my pulse is under 95 BPM. Just yesterday I had a reading of 80 BPM after 10 minutes of standing!!

A month ago I was getting full really quickly, but now my appetite is back to normal, but I still get a bit more tachy after I eat a big meal.

Also a month ago when I wrote this I was having some dribbling issues, or "leaking" it wasn't bad at all, but it was a very annoying feeling, luckily those issues only lasted about a week, and I have not had those issues for about 3-4 weeks now.

When I went to the Mayo Clinic in AZ, on October 15th, they didn't really do much, they just talked to me, and did a "poor mans" tilt table test, lyingdown at about a 25 degree angle my pulse was 80 BPM, standing up after 2 minutes or so my pulse was 87, when I was sitting with my feet hanging off the floor my pulse was actually higher then standing (about 93 BPM). They could have scheduled a TT test, but I would have stayed another 5 days, so instead I just saw a Electro Cardiologist locally in Orange County. He told me if I do have POTS i'm a lot better off than most people, and that it's a good sign that I'm getting better on my own, and just recommended I continue to drink lots of low calorie sports drinks and keep my salt intake up (things I told him I've been doing on my own). They did a 24 hour holter monitor, (which I just returned today) and I'm scheduled for a stress test tomorrow.

It definatly feels like I'm improving even tho my symptoms were never that bad in the first place, my Blood pressure is still normal and that's a plus. But there is always that fear in the back of ones head that things might get worse. Did any of you ever start off with symptoms like me, only to have them get worse later on?

[Mrs. Burschman]

Small Update.

A month ago when I posted this my pulse was going up over 120 every time I stood up. Now on my very worst days, when I stand my pulse goes up to 115, on bad days it goes up to 105, in the last 3-4 weeks, I've had many many readings where my pulse is under 95 BPM. Just yesterday I had a reading of 80 BPM after 10 minutes of standing!!

Rylen,

That's awesome! I hope you're one of the lucky POTSies who recovers fully. But you have to promise to remember us when you move on to bigger and better things.

Some people do relapse. But others get better and never look back. We just don't hear from them.

Amy

[Rylen]

Small Update.

A month ago when I posted this my pulse was going up over 120 every time I stood up. Now on my very worst days, when I stand my pulse goes up to 115, on bad days it goes up to 105, in the last 3-4 weeks, I've had many many readings where my pulse is under 95 BPM. Just yesterday I had a reading of 80 BPM after 10 minutes of standing!!

Rylen,

That's awesome! I hope you're one of the lucky POTSies who recovers fully. But you have to promise to remember us when you move on to bigger and better things.

Some people do relapse. But others get better and never look back. We just don't hear from them.

Amy

If I make a complete recovery I'll be sure to let you guys know, and you guys will forever be in my prayers.

[ajw4790]

Congrats with all the improvements! Hope it stays that way for you!

[Rylen]

Well I want to update my story.

I have continued to get better and better, I work full time (50-70 hours a week) and have had no issues, I also have a Disneyland annual passport and visit nearly every weekend for 4-6 houTrs with my family. But my heart rate is normal I'd say 80% of the time when standing.

Sure I still have exercise intolerance, running and carrying heavy objects causes my heart to race but it wasn't an annoyance. I also have about 3-5 "bad days" a month where my heart is a little faster than normal for my liking, but other than that I had no other real symptoms.

But this Thursday I felt a little dizzy, kind of a weird feeling. Probably not nearly as severe as some of you can get. But I figured it was POTS related, than the next day on Friday I had a one day horrible cold. My whole body was achy, and my head was slightly pounding. Also I had horrible Tachycardia in all positions. I didn't check my heart rate, but I could easily tell it was over 120 in all positions. Of course this scared the crap out of me bit I figured it was just from my weird illness.

My illness is now I assume gone, and even my tachycardia is gone, my heart rate is again between 65-80 BPM in all positions, but I still feel a slight dizziness?

Hopefully I cOntinue to improve, and this weird dizziness will go away in time like my tachycardia did in the past.

What do you guys think? And do your colds, flus, or other illnesses ever cause crazy tachycardia even when lying down? I had been sick before, but the tachycardia never happened.

[chipper]

Welcome and my prayers go out to you and your beautiful family!

[Rylen]

Thanks, but I'm guessing you only read the first post?

[Chaos]

Colds and flu can definitely trigger relapses in POTS symptoms. Since you were only sick a few days ago, it might even just be some residual congestion in your sinuses making you feeling dizzy?

Sounds like you were doing really well prior to this. Hopefully, at the worst, you will just take a little longer to get back to where you were before you got sick.

I know my docs have said anything that challenges your immune system (even allergies) can re-trigger some symptoms.

Keep us posted on how you're doing. It's exciting to hear that you were doing so very well!!

[Rylen]

Can't figure out how to quote on my smart phone.

But yes, I was doing extremely well. Living a normal life, and not really thinking of my condition.

Sure I had some very very minor relapses between than and now, but nothing that lasted over a week, and that couldn't be nearly relieved with lots of very cold water or powerade zero, and deep relaxed breathing. I wish it was so sympol for everyone.

I also saw a NUCA Chiropracter who honestly seemed to help relieve my symptoms back when all this started 2.5 years ago.

Anyway if I was at 90-95% recovered during what was nearly a 2 year remission, I would now consider myself at about 70% with this small setback.

I'll keep in touch

[Rylen]

Took a Centrum Vitamin last night, wow that was not a good idea. I should have researched more but I was so desperate to get better again.

The vitamin made me feel horrible, I felt extremely wired and I couldn't sleep (I usually sleep easily)

Today I still feel a little wired/weird/ maybe slightly dizzy?

Now im wondering if the last 4-5 days of me feeling slightly "dizzy" was actually more of a "wired" feeling? Or maybe it's a slight combination of both? Anyway today it's more of a wired feeling for sure.

Blood Pressure was pretty normal this morning too, around 120/95 -128/103 standing and sitting.

[Chaos]

Frustrating when you don't get better right away after an illness like you had. Hopefully your 70% will keep improving.

Those BPs you noted look like you have a narrow pulse pressure so that may account for some of your "weird" feelings. Your diastolic numbers seem kind of high as well. What's your pulse doing with these numbers? (When I was researching the topic it said that pulse pressure should be at least a 25% difference between top and bottom numbers...e.g when you're at 120 on top your bottom number should be 90 or below.)

[Rylen]

I felt great this morning, first time with no "weird" feeling in days! So I didn't even bother checking my pulse pressure.

I'll check it later today, now that I'm feeling weird again

[Chaos]

Cool that you felt great in the morning! That's the worst time of day for me personally.

Maybe those hours of "good" will continue to spread in the next weeks. Since you had such a good recovery in the past, I'm optimistic on your behalf that it'll return this time.

[Rylen]

Cool that you felt great in the morning! That's the worst time of day for me personally.

Maybe those hours of "good" will continue to spread in the next weeks. Since you had such a good recovery in the past, I'm optimistic on your behalf that it'll return this time.

Thanks Chaos. I'm optimistic too.

Also when I checked my BP last night it was 122/85 standing and 135/93 sitting. Guess its not a narrow pulse that's making me feel weird.

[Rylen]

Yet another update..

I got out of my relapse from a year ago after about 2 weeks, and had been relatively well up until the begining of this month.

Around March 1st I went to a bar with my brother had some beers, and practically immediatly afterward felt weird, and got sick later that same night. They were cold like symptoms and only lasted about a day.

But since than I have been feeling off, just weird. My heart rate is also rising a lot more then when I was doing so well for the past year.

The weridest thing is that I felt off and potsy from March 1st to about March 15th, than I was fine for the next week. And now for the past week or so Ive been feeling off yet again! It's really annoying and of course always scary that you wont come out of.

My wife and kids have had a cold for the past 4 days or so, maybe a little more. Maybe they got me sick and that is what caused me to relapse again after a week of feeling fine. If that is the case it's just a little weird that I relapsed before they started showing their cold symptoms, and all I have is a stuffy nose that started yesterday morning.

Anyways just thought I'd share this latest update. Hope I come out of it soon!

[cupcakemomma5]

Fingers crossed for you and your family : )