New to POTS and have questions

[ginger]

First off, thank you to those who created and host this website and forum.

I was diagnosed with POTS in August 2004 at Cleveland Clinic. I'm currently 35 years old. My case is complicated by a skiing accident in January 2004 that has resulted in additional injury/ANS symptoms, specifically neurogenic bladder, cystocele, anal sphincter damage, constipation, nerve pain/burning and lower back/sacral pain. POTS for me includes symptoms: dizziness, fatigue, chest pain, ear pain, headaches, sleep apnea (I use a CPAP), decreased appetite, nausea/motion sickness, cognitive 'brain fuzz' and just overal 'icky' feeling.

I have several questions for the Forum:

1-Does anyone have ear pain or ear problems as a result of or in addition to POTS? I'm having more and more inner ear pain, and it seems to come on during or after an "episode" or with the dizziness.

2-Also, how common is chest pain and is it a para- or sympathetic nerve response (as my cardiologist suspects)? Just trying to figure out why the chest pain.

3-Do any of you have underlying autonomic neuropathies/disorders/disease? My neurologists want to explore this possibility with me. I'm working on a trip to Hopkins in October via referral from Cleveland Clinic. Can POTS be a primary diagnosis? Or is always secondary to something else? I suspect that I have had mild POTS since having children (they are 9 and 6), but I feel the skiing accident threw me into even more of an autonomic neuropathy and increased POTS symptoms. With my other autonomic system issues I'm a bit nervous about this possibility--MSA, PAF are pretty scary to read about.

4-Lastly (for now anyway ), do any of you experience both POTS and orthostatic hypotension together. My tilt table was definite for POTS (63 bpm increase in less than 2 minutes), but the blood pressure dropped only slightly. This morning had a major episode and took my BP/HR. Sitting was 112/77BP and 77HR and then immediately standing was 79/58BP and 102HR. I had not yet taken my am dose of beta blocker.

I know this a lot to respond to, but I know you have all been there before--questions, concerns, frustration. Thanks for your help! My e-mail is littlecowfarm@sbcglobal.net for personal responses.

Ginger in Central Illinois

[briarrose]

I guess I hesitate to answer because my POTS/NMH wasn't brought on by an accident.

1) My ear problems have been mostly a muffled or ringing sound. Always worse when I'm anemic and hypovolemic. I rarely have pain but if I do it is usually short and sharp. I have had muscle spasms in my ears since I was about 10 years old. The doctor could actually put the stethoscope up to my ear and hear what I was hearing, kind of a clicking sound.

2) Chest pain - I know that some people here suffer severe chest pain. I would say that my chest pain is usually mild. I can have palpitations and flutters, all documented on monitors as PVC's, PAC's and V-Tach. My problem is usually severe back pain, behind the heart. Last time I had severe back pain, I spent 14 hours in the ER.

3) Can you re-phrase the first part of your question, it can mean many different things. I don't have diabetes. I do have NMH. I have a problem with joint/muscle/bone pain, rashes, tingling/numbness in my extremeties, severe spasms everywhere and visual disturbances. POTS can be a primary diagnosis. I've often worried about PAF and MSA too. I had kind of thrown that out here once before and felt better after getting some feedback from others.

4) I can totally relate with this one 100%. 3 years ago, I only had problems with the tachycardia, not blood pressure. But now, I get the same kinds of readings as you. My lowest pressure so far was 60/40, I couldn't get off the floor. When my pressure gets consistantly down in the 80's I go into my doctor for IV fluid, it normally means that I'm hypovolemic or dehydrated. This is one of the worst things that I try to regulate. The doctors are frustrated too. Between giving me beta-blocker to keep the heart rate down but not too much to make my hypotension worse.

I hope this helped a little. Good luck to you on Mayo Clinic.

[blackwolf]

Dear Ginger, WELCOME! Yes this is a great site and I too thank all who keep it running. As to your questions:

1 Yes, I have ear aches in both ears when symptoms are bad, I also notice ringing in the ears about 2-3 times a day.

2 chest pain, yes, why good question, I was told both per irregular heart beat and occasional racing heart rate.

3 yes, many of us do. Personally I have Fibro/CFS.

4 I was dx'd with OH befor the POTS so yes the can and do over lap. My cardio doc often referres to POTS as OH. Go figure.

Again welcome to the site and I hope you get as much help here as I did and still do.

Blackwolf

33yrs old female

OH/POTS since march of 2000

[ginger]

Thanks for the responses thus far. All of a sudden I feel like a good cry. I've never used Internet forums before. But with all of this life-altering stuff going on, it feels really nice to have real people with my same problems to talk to.

I ended up at the cardiologist's office today--they were not pleased with my BP and HR readings this morning. So, we're backing off to 1/2 dose of beta blocker and adding Florinef. Actually, I'm really impressed with how much my cardiologist seems to know about POTS. I found out today that he is the only doc in the practice who has experience treating/diagnosing it--most of them didn't even know about it. He happens to be the director of all cardiology servies for a large hospital in central Illinois and professor at UofI College of Medicine at Peoria; he only came here a couple years ago with plans to turn our area into a heartcare "magnet." I also learned he trained at Hopkins--it shows in how much care and respect he shows for me and all of his patients/staff. We'll see how the meds go.

On ear pain: I should have mentioned that I do also have ringing and weird static-like buzzing sound.

On other disorders: My question was to find out how many POTS patients have only POTS or have POTS as a result of another disease/disorder. I've especially got bladder problems. I'm likely going to get an Interstim placed in the sacral nerves, so I can get off meds and self-cathing. It's like a pacemaker for my damaged sacral nerves, which control bladder function. Today, the cardiologist suggested I needed to get off two of the urinary drugs as they may complicate the treatment of POTS. I've read that POTS can be triggered by diabetes, Addison's disease, MSA, PAF, etc. And that's the concern of my neurologists, that I may have autonomic neuropathy due to one of these other things.

On chest pain: I have terrible back pain behind heart, too!!! Wow, it's not just me. Pain always comes with the really bad episodes.

I'm sure I'll have lots more questions. And I hope you'll all forgive me. I do enjoy talking quite a bit! Talking, learning, humor and faith are helping me keep it together.

Ginger

Oh, and by the way, if any of you are in central IL area, it's Dr. Igor Singer, cardiologist and head of the new Methodist Heart, Lung and Vascular Institute in Peoria.

[Merrill]

Hi, Ginger. Just wanted to say welcome to the board, fellow Illinoisian ... I'm up in Chicago. Sorry to hear you're having a tough go of things ... that skiing accident was sooo serious! Uch. Having a good cry sounds like a fine idea; I have them all the time...but finding conversation and humor and support on this forum is an even better one, so come here often.

I can't answer many of your questions ... but I'll say that POTS isn't always secondary to another health condition. That's true for me, anyway. I have pots and pots only--and I've had it for more than 30 years since I hit teen years (but I was only diagnosed 9 months ago as symptoms had gotten worse). Actually, looking back on my life, I can say that I've had years of better and years of worse, with some symptoms just being part of my identity (e.g., exercise and heat intolerance and super-fast heart rate). By the way, my blood pressure didn't drop during the tilt table either; for some there's no blood pressure change at all, while for others, bp drops, and for still others, bp goes up. BP isn't the most important thing they look at during the TTT; heart rate is.

If I weren't so tired, I'd give you some links to other resources you might want to read... the dysautonomia book from the references section of the NDRF site for example. Gotta run, but take care.

[ginger]

Hey, thanks Merrill. Since humor is a good thing. I have to tell you we always joke down here that Chicago and Illinois are separate states! lol The really funny thing is that many of us love to visit Chi town!

And thanks for the book note. That was one question I just had a few moments ago. Are there books out there on POTS? It seems so understudied.

What makes that worse for me is that the sacral nerve damage I had with the ski accident (on my brand NEW Christmas present skis, boots and bindings mind you... ugh!) is also extremely understudied. According to the head of EMG lab at Cleveland (who performed my anal sphincter EMG, talk about pain) nerve damage in the sacral or pelvic area is difficult to diagnose and treat. Only a handful of experts are working on it. He said, "it's like an orphan disease." Drug companies don't want to fund research for it if they can't make money off of the treatment. I wonder, too, if that also applies to POTS/OH.

Off to bed for that good cry!

[MightyMouse]

Welcome Ginger.

I have POTS and NMH, which are my primary diagnoses, and it's believed by my docs that mine may be genetic and likely I've had this since birth.

Others have answered most of your questions quite thoroughly, so I'll just add that the ANS does have a role in bladder function, so that may be the source of your issue. If you've damaged the nerves (via the accident you had), it may the cause.

The links Merrill mentioned are here:

Free pdf download of the Dysautonomia Handbook by NDRF

http://www.ndrf.org/NDRFHandbook.htm

List of common symptoms from the main DINET site:

http://www.dinet.org/symptoms.htm

Causes of POTS and other ANS disturbances, as we currently understand it:

http://www.dinet.org/what_causes_pots.htm

I strongly suggest reading the content of above link because if they're looking for a primary, treatable disorder as the source of your symptoms, this section will show you the many issues they'll be trying to rule out.

Glad you got a warm welcome for your first entry into forum life Nina

[Merrill]

Ginger--I hope you downstaters will join us in the state of Chicago and vote!!! Please oh please???

(I guess my candidates of choice got edited out. Oops; that must've been a no-no. Hope I didn't offend anyone. I had to add this b/c the post sounds so goofy now!)

[justin]

ginger:

i get tachycardia upon standing, but in the virtual absence of hypotension (most days). that is to say, my BP drops ever so slightly, but not enough to be classified as orthostatic hypotension (although i HAVE HAD orthostatic hypotension, just never when my doctor/cardiologist/whoever takes my pressure while standing).

justin

[ginger]

Thanks for the links! I'm still trying to plow through all of this website and the NDRF website. Lots to learn! I think I've printed out nearly 4 reams of paper since January--everything from my spinal cord/sacral nerve injury to now POTS. I'm gonna have to plant some trees this fall.... well, or hire someone to do it!

[Timbo]

I've had tinnitus and mild temporary hearing loss.