New To Pots And Many Questions

[navyblue]

Hi all! Female, 21 years old, in college, hope to be a physician assistant, medical technician, medical researcher, or similar career eventually.

This is long, feel free to skim. I really really appreciate any help or support. Also, I really apologize if I seem to be making a big deal over a situation that is not as bad as many of yours'. I am still pretty functional, just worried and want to feel "normal".

HISTORY:

Always been very healthy without trying. Even if my whole family got the stomach flu, I'd always be the one that threw up only once while everyone else was much worse off. Mental health great too- sometimes some weird issues with persistent deja vu, but that's about it.

But of course, everything feels a lot different now as of about 8 months ago.

Was a gradual onset, I suppose. Just one day fell asleep in the backseat of the car at 5 pm even though it was winter break and I'd been getting tons of sleep and thought "that's weird" and then over time just felt off, out of it, and kinda dizzy when walking. And it kept going. I got super stressed about it, worried about leukemia (blood counts fine), then brain tumor (CT scan fine), and then had a big MS fear because of left leg tingling and a small cold/numb patch on my calf (MRI normal)....I slogged through the winter quarter at college, but it was such a struggle, mostly because of my mental state about the dizziness and head pressure. Got really depressed about it. Sometimes got derealization/depersonalization and just felt like things were too awful to be real. Kept going.

Felt a little better spring break and spring quarter. At times I would even say dizziness was gone. Always on the lookout for other symptoms and never really felt free of it all...but better. Dizziness would sometimes come back and then go and then come back over the weeks and months....recently it's gotten bad again. At its best it'll show up only after I've been walking for like half an hour, but at its worst I feel a slight rocking/movement when sitting and lying down and every time I get up it's like I'm on a boat. That's kinda where I'm at now, although at times it's better.

On a whim, I recently used my my mom's BP monitor to do a supine-to-standing test (I encountered POTS in my online research about what could be causing my issues)...heart rate does consistently increase by 30 or more bpm everytime I do it. BP stays same or even goes up. Thought maybe the BP pulse reading weren't too accurate so got a pulse oximeter. Same thing.

The worst one I've gotten was 62 lying to 118 standing. Ughhhh. HR has gone up to around 130 just by standing sometimes.

START HERE IF YOU DON'T WANT TO READ MY BORING STORY BUT MIGHT BE ABLE TO HELP WITH MY QUESTIONS:

So...it seems like POTS, as I have consistently had the 30 bpm and even up to 50 bpm increase. Weirdly, I never before really thought of my issues as "when I get up I feel lightheaded and bad"....that's not really the case even now. I have never fainted, never felt particularly close to fainting either. It's more this dizziness that is more evident while walking and gets worse if I've been walking for a while, and sometimes head pressure. But I can't argue with the numbers.

POSSIBLE CAUSES:

Concussion and Whiplash- I've read a little bit about how these could cause POTS. A week before symptoms began, I had an accident skiing...couldn't slow down on a hill, clotheslined myself on a rope w/ my neck, fell to the ground and hit my head. Saw a lot of stars, but don't think I ever lost consciousness. Felt a li'l lightheaded the rest of the day, but not really dizzy and never really got a headache or neckache. Was pretty fine for a week and then dizziness started. Potentially I agitated/entrapped some neck nerves and it's causing the POTS but

- Why would there be a week before symptoms if the structural damage occurred at time of accident?

- Why do I sometimes go weeks without dizziness and then it returns if it's a structural thing?

- What can I expect here- POTS from head trauma? I know nerves take a long time to heal...if something is entrapped would manipulation help? Or am stuck with the POTS? Anyone had POTS from head trauma?

Some sort of neuropathy- I have issues with some tingling, mostly left side. I also have some issues with what I call "cold patches" of skin...sometimes on calf, others times ankle or toe. Occasionally I get "zaps" of pain. But neuropathy needs a cause, right? Which brings me to -

Lupus- I notice a sort of butterfly-shaped flush I never used to have, plus some persistent mouth sores and hand stiffness in the morning. But the main symptoms of lupus are joint pain and fatigue...and I don't have much of either of those.

MS- unlikely from normal MRI, but possibly?

Lyme- been wondering about this one a lot. Anyone have experience with Lyme-related POTS?

Just bad circulation- often get cold feet, hands, nose, even in warm weather. Seems to run in the family.

Hyperadrenergic- because my BP can go up with standing...but I don't really experience flushing, clamminess, pounding, flood of anxiety, or any other of those adrenal-type symptoms.

Contribution of mentality- I don't believe all this is in my head like everyone around me tells me. But I know my mentality isn't helping. Before my at-home heart rate tests and subsequent suspicion of POTS, I never really felt like standing up was difficult, now I'm starting to dread getting up to get a glass of water, etc. The time when I felt best was on a 2-week roadtrip where I barely looked at my phone to do much reading about possible conditions.

GETTING DIAGNOSED:

I'm about to go to a new PCP and ask here about this POTS thing, telling her about the HR change and symptoms. I'm pretty sure I'm going to get told I'm anxious and that it's nothing to worry about. I'm not sure what to do when that happens. I want to get a beta blocker or something like that to help with this.

PROGNOSIS:

From what I've gathered- some people wax and wane with periods of remission and flare, a lot of people get better over time and get things manageable, some people recover totally, and some people suffer a lot for years and it doesn't really get better. A lot depends on underlying cause.

I dunno what to expect, I guess. I definitely wasn't a post viral onset, nor a puberty onset, and I know both of those are often associated with good chance of recovery.

However, it hasn't been that bad for me yet- no bedridden, no feeling that I can't do things, minimal fatigue. There have even been times of being symptom free....however I just get super scared when I read about people whose POTS got worse, and how they "crashed"....I'm sorry, I know I'm lucky so far, but the thought that that could happen, that I might not be able to work or go to school, how my boyfriend might react if I got worse.

So I just want to know what I might expect, with my onset at 21 yrs. old maybe linked to head trauma or perhaps Lyme or maybe neither, and with still being pretty functional. Could I get rid of my dizziness and feel back to normal?

I know this was super rambly and long...I might post something shorter and more focused later, but it felt good to write it all out. Any help/input would be hugely appreciated.

[navyblue]

Too many questions, apparently lol

[MomtoGiuliana]

Hi navyblue

Welcome and thank you for introducing yourself.

I think that for best response it can be best to post one question at a time.

I am sure being new to this condition/these symptoms you are overwhelmed and simply have a lot of questions.

To answer a couple of your questions...

I think members who use support forums tend to be the most affected patients. There are many POTS patients who are mildly affected. But they may not join a support forum or use one much. Also many patients improve greatly from severe symptoms. Its also correct that many of us experience a waxing and waning of symptoms.

The tilt table test is the standard test for diagnosing POTS.

Yes some patients report POTS/OI began following trauma/accident.

Again, welcome to the forum.

[BeforeTheMorning]

Hi navyblue,

Welcome to the forum!

I read right through your post, but I'm not sure I'll be able to answer all the questions! Sometimes it does feel good to just write it all out though doesn't it?

With your heart rate numbers it does seem that POTS could be a possibility. Although it would seem to be a mild case as your only symptom is dizziness, if I've got that right? But I do know how annoying that can be, how you just want to feel normal again, and how disconcerting it can be when you have symptoms but no diagnosis. The best thing to do would be to see a doctor who knows about POTS. Hopefully your new PCP will, but if not you could see if you could get a referral to one of the doctors on this list: http://www.dinet.org/index.php/physician-list?view=physicians

I would think that you should definitely mention your skiing accident to your doctor when telling them about your dizziness and head pressure. Seeing as it all started soon after.

It's easier said than done, but try not to be scared about getting a POTS 'crash'. After all you don't really know that it is POTS yet. And even if it is you may never have really bad symptoms, or it may turn out that you have a treatable cause for POTS. There are many different possibilities.

I'm sorry I can't answer all your questions, as I really don't know enough to give you a helpful answer.

Stay strong and I hope you find some relief from your symptoms soon.

[statesof]

Hi navyblue welcome to the forum, you seem to have a lot of unanswered questions that would probably be best answered by diagnostic tests (tilt table, Lyme test, ect). I think it is very difficult for us to make sense of our symptoms, why a specific onset or group of symptoms manifests at one particular time. In my own case my symptoms seem to defy logic, something that is a constant frustration to me and a difficulty for my doctors in understanding ways in which they can help. Just try and find a doctor who listens and is understaning, push for the tests that can help rule things out and further your diagnoses. The "it's just anxiety" answer is something I think most of us have had to deal with until we saw an autonomic specialist or doctor who has a better ability to understand our symptoms as a whole.

[masumeh]

Hi navyblue,

College is a crazy time...there's a lot of latent stress, stressful things that affect your body without you perceiving it as stress because stress can be good or neutral and still affect you...it's such a pivotal time for most, career, social, and other vital parts of who you are come together in these years...but no pressure . You definitely don't need these worries about brain tumors, MS, etc. on your plate. I hope you get back to your normal health soon. Here's my advice:

#1--Before you (or any doctor) can say you have POTS, you need to see a cardiologist in order to rule out other causes of these symptoms that commonly show up at this age and are common to young women (e.g. heart arrhythmia, pulmonary hypertension). The cardiologist will conduct an echocardiogram and EKG to check your heart health.

#2--If you do have POTS, there's a lot you can do to try to battle the condition, and it helps if you catch it early, before you lose too much of your health and resilience. Start now.

*Stay physically active. In particular, work your calves because this will help aid venus return. POTS is not like having the flu where you just need to rest. It's counterintuitive when you feel crappy, but you need to stay active. Bed rest will only make POTS worse.

*Stay hydrated. Some of the orthostatics your describing are similar to results for dehydration, as are the dizzy spells, especially given that you said your BP rises (which is a contraindication to autonomic damage). And anyways, POTS sufferers need to pay particular attention to hydration, including electrolyte restoration. Drinks with electrolytes like Gatorade and EcoDrink are helpful. Drink LOTS!

*Relax. Stressing over your current symptoms, which don't seem to be disrupting your life from what I understand in your words, might A) make your POTS worse if you have it, and B ) create a problem where none exists if you don't have it. Illness anxiety is partially characterized by a belief in "perfect" health; that does not exist. There are many simple causes to what you're describing. And hopefully, it's just one of these and will pass quickly for you.

#3--Last advice I can think of for you is to find a doctor who is experienced in POTS, since that's what you suspect you have. Many doctors just don't have enough understanding of POTS to give you an answer either way, ruling it out or diagnosing it. When I was 21 and first searching for answers, I saw like 40 doctors with some really severe presentation of typical POTS and they just kept telling me all their tests are normal, and am I stressed, and bla, bla, bla...I was also in college, so you're giving me deja vu now ....that was in 2002/2003 though, and POTS only entered medical diagnostic manuals in 1996, so hopefully things are better now...find a doctor who can conduct a Tilt Table Test. If he/she can't, their clinic is probably not equipped to assess a POTS patient. You might try using the physician directory on dinet's webpage.

Good luck!

[masumeh]

oh, forgot this, came to mind... your "concussion and whiplash" doesn't sound like either. I've had both. a concussion comes with headache, like the worst you've ever had, and neuro symptoms such as slurred speech, double vision, mood swings. sometimes nausea and vomiting. you will feel this pain in your head immediately, and it would last for hours to weeks or even months, depending on how severe the concussion is. easiest way to tell a concussion is immediately following the accident, look at the pupils. as for whiplash, the typical development of symptoms is that you don't feel anything for a couple days after the accident, then start to notice a very stiff neck, light nausea, headache that feels like somebody squeezing the back of your head. the neck muscles are spasming, and this shows up on MRI.

as for stretching nerves or pinching them, are you hypermobile?

[navyblue]

Thank you soooo much everyone for your detailed replies! Thanks for the reassurance about the head injury, mamuseh...sometimes I fall into the trap of "clearly I have some sort of irreversible damage from the injury and it'll always cause POTS-like symptoms", but that doesn't make sense as I never felt that bad from that injury and it wouldn't explain the waxing/waning nature. And that's so true about the "perfect health" fallacy!

It's like even when I feel pretty okay I don't fully enjoy it because I'm waiting for the other shoe to drop. I don't think I'm hypermobile, I can't lick my elbow.