navyblue

I'm relatively new to this but for me it waxes and wanes quickly...couple weeks bad...couple weeks pretty good, etc. EVERY time I ever feel bad with dizziness I repeat the mantra "It went away before, it will go away again" over and over. Then I think of a day in which I wasn't dizzy and sort of replay it in my head, knowing it will happen again. And it's true. So far it always "goes away again". So I believe if you got in a remission before it shouldn't be toooo long before you're getting back to being better again.

Thanks you so much for your input everyone! Seriously, it's so awesome how people take the time to read and respond. I'm living with my family for the summer. Usually I live with my friends while going to college, which is what I'll be doing in about a month. And Sylvie, you're so right- there is at least one silver lining in all this and that is a gain of independence. I have to take charge and figure this out and in the process I'm learning how to trust myself even while scared. My doctor's appointment went pretty good! It was a timid young PCP who didn't seem to know about POTS at all, even when I explained the heart rate thing, she had nothing to say on it. However, she told me she ordered a CBC and TSH blood tests and I risked asking for the ANA (to look for autoimmune issue so I can either stop worrying about that or figure it out), citing my stiff hands, and according to the forms they gave me after the blood draw she ordered it! So that's happening.

I know I've been posting a lot but just feeling overwhelmed by it all. I feel like I can't really talk to anyone in my life about these invisible health issues and how sad they are making me. If I say anything to my mom she just goes "Oh, I'm exhausted too. I get dizzy at times. I have high blood pressure, at least you don't have to worry that. You are fine! Don't you dare go to the doctor again." I get where she's coming from, but I'm 21, I'm supposed to be figuring out my life, and ill health isn't just an occasional worry, it's completely taken over. I feel like I'm breaking down. lf I press further about how bad I really feel it just makes her sad. Same with my dad and brother, it just makes them sad and I don't like that. I can talk to my boyfriend but I sound like a broken record, and I don't want him to associate me with illness, I want to seem strong and vibrant and attractive. But it's so hard when I'm worried about this 100% of the time and I DO feel like my whole identity is wrapped up in a mentality of sickness. The POTS symptoms and heart rate issues have been one thing, but I felt better when I saw improvement and recovery stories on here. However, lately I've been worried about underlying cause....I have a sort of numbness/tingling/occasional light burn in my toes and going up my leg...it's like peripheral neuropathy of some sort and I suspect an autoimmune cause...maybe lupus or Sjogrens. And I don't want to have to deal with that nonsense this young. I feel like an underlying cause like that is not a good sign for getting better from the POTS. I feel worse lately. Dizzier and chest tightness...for the first time in the 8 months this has been going on I've been feeling truly fatigued, not just tiredness but a sort of feeling like my heart and lungs are straining. I keep telling myself how I've seen improvement before and will again, but this feels unprecedented and I don't know if I believe it. I have a doctor's appointment set up for today but even on the phone when they asked what the appointment was for I just blurted out "pap smear" because I didn't feel like listing out a bunch of symptoms that would likely be deemed psychosomatic...and when I see the doc of course I can't just say "I want an ANA blood test" I'll have to list out symptoms and just get a vague response about anxiety and burn out. I know I sound pessimistic, but it's happened before. I'm 21, I'm supposed to be worrying about school and what to do after school and relationships and instead I'm constantly thinking about how bad I feel and what it could be and....I just don't know what to do. There seems to be no end in sight.

Thanks for the reply, do you know what is causing your neuropathy?

So I know how 50% of POTS patients have small fiber neuropathy...anyone with experience in this, what type of a POTS course has it come along with....waxing/waning, improving, progressing? I'm under the impression that nerves heal, although it takes a while...maybe this is the reason that POTS can improve over the years? But then, I suppose, if there's an underlying disease process causing the neuropathy, that must be taken into account too... So just wondering people's experiences with this...is a recovery still possible/likely when small fiber neuropathy is involved? What does the research say? What have your doctors said?

I'm so glad I found this...thank you, thank you, thank you...in my experience with health forums in general a lot more negative than positive gets posted, and that makes sense: people are looking for support/answers, but there is great positivity here!

Weird scary thing happened yesterday, wondering if anyone can help me make sense of it. I was sitting down and trying to solve a Rubik's cube...and I was thinking really hard about it. Almost immediately felt a headache coming on but didn't care, needed to solve it. Then, I started getting chest pain, mostly right side. Kept trying to solve it. Head pressure too. Then I suddenly felt this weird deep vibrating/rushing feeling in my foot like it was really full of blood and my brain felt like it was deprived of blood, Looked at my foot and it was all red and blotchy. Elevated it and kept trying to solve the dang thing. Finally felt so weird and anxious that I stopped. Decided I had to move to get the blood going right again and so took a dizzy walk around the block....has anyone gotten symptoms from thinking hard? This had never happened before, though that same leg tingles a lot. I almost wonder if it wasn't like a blood clot in my leg or something...does anyone else get right-side chest pain?

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.

Too many questions, apparently lol

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.