Libby

You might want to add Prozac to that list. From what I remember reading when I first went on it, it's pretty well tolerated compared to some of the other SSRIs. It also doesn't really have a withdrawal, if you ever want to go off of it, because of its long half-life. I went off of it because the number of meds I was on was getting ridiculous, imo, but not because it wasn't helpful. The most obvious way it helped me was with how irritable I could get from the physical stress of POTS. My temper could be wicked short and I absolutely HATED how nasty I could get. I felt so much better after a few weeks on it. I'm not sure if it was alleviating some physical bp/brain blood flow symptoms or just working on my seratonin, but either way it was good. And even after 4 months off it, I'm nowhere near as bad as I was before I started on it, which was something I was worried about.

I've never really gotten 'better' - I've had better days, but I don't think that my POTS is the kind that goes into remission, honestly. I've had it for as long a I can remember...it's just a slow decline, pretty much. But I wanted to point out that your results may be a bit skewed. The poll won't let me just answer 'no' on the first question and leave the other questions blank, even though they don't pertain to me because I've never 'recovered'. So the people who answer 'no' on the first question have to have answered the following 2...you might want to put an option in questions 2 and 3 to cover that, if you can edit polls. I can't remember if that's allowed.

Ugh. I'm so sorry! That's so irritating. Cardiologists in general are not my favorite people. Like lemons said, it's probably because they see people who are days away from dying all the time. But I stop caring about their reasons when their jerky attitudes show up to my appointments. The one and only time I went to an EP, he told me that he totally understood what POTS was like because he would study too hard in med school, sit for too long, then feel dizzy when he stood up. HAH. Yes, that's EXACTLY what POTS is like. I hope you can wring a diagnosis out of your doc! And maybe a little understanding, but that might be too much to ask for.

Yes, I've asked this question before too. The answers I've gotten vary from ... since the tachycardia is not sustained, it's likely not going to cause damage... all the way to - it caused congestive heart failure. So I guess the answer is - who knows! Until proven otherwise, I'm just going to assume that tachy gives my heart the exercise that my body refuses to and, thus, is good for me. No popping my delusional bubble!

It's funny how, when I finally was told that I had POTS, a diagnosis was like the best thing ever. Now? Not so much. POTS, NCS, Hashimotos...it kind of feels like I'm collecting them. Like baseball cards or beanie babies. Small fiber neuropathy this time. I thought that was what I was going to hear, but it's still kind of annoying to have it be official. I don't think that I'll get any better, honestly. I just don't think my POTS is that type of POTS. I've had it for as long as I can remember and it's been a slow decline...But I'd love to have the symptoms level out while I'm still functional. This slow progression is irritating the heck out of me. And it kind of scares me. I'm 26. If my body's this messed up now, how will it be in a decade? Or even a year? As you can tell, I'm throwing myself a bit of a pity party tonight. Back in the saddle tomorrow, but tonight life kind of *****. Blah.

I hate to sound preachy, but tanning beds are right up there with cigarettes in terms of heightening your risk of cancer. I've seen the units with the melanoma patients on IL-4 (best treatment for stage 4 at the moment...8% cure rate, 92% death) and trust me, POTS seems like a cake walk compared to that. Use Jergans like i hate bananas suggested. Or bronzer.

Just thought I'd mention that the type of beta blocker can make a difference. Propranolol knocked me flat on my ***, but metoprolol I tolerate really well. Might be worth it to try a few.

Thanks for the replies, everyone. I didn't pass out in mine either, at 70/22, so it got me wondering. Regarding the TTT with saline - I had an IV the entire time, like Chaos. Mine was done at a cardiology group's office, and was intended to be an hour long. I just assumed they gave saline to everyone...hm. Interesting.

Me too. Mine was 5 and 2 weeks of 50,000 a day brought it up no problem. Getting your levels up is easy and can only make you feel better. I used to get these shocks, I guess you could call them, that would flow down my arms. Like a duller version of a static shock. Vitamin D got rid of them.

I tried to find an approximate BP at which a person will pass out, but nothing I saw would commit to actual numbers. They just kept throwing around phrases like "but when it gets too low". I know it's different for everyone, and there are other factors in play (cerebral flow, how quickly your bp drops, etc). But I'm curious: what's your individual threshold?

If you're going to ****, save me a seat because I'll be right behind you. It really is interesting how so many of us get a 'suck it up and deal' attitude from family and friends. In a way, I wonder if I'm better able to tolerate the symptoms because I've been forced to do it without complaining for so long. The nurse who did my ttt first suggested it to me, telling me that by then most people would have passed out (or would be begging her to put the table down), but I just said "Oh, there goes my vision." She thought the reason I remained conscious (sort of) and calm was because I had had so much practice not passing out. I was never really allowed to let my symptoms inconvenience anyone (but me haha). And I'm pretty sure it was the years of not-complaining that kept me nice and civil, because I know that I really, really did want that table to go down.

I've only had one ttt, but most symptoms were definitely worse. I felt worse than I ever have. Nauseous and upset and sweaty, and all I wanted to do was either punch someone or just cry. I had all but passed out less than 15 minutes into the tilt. But I'd never passed out before (or since) in my life. My hr went from 90-145. That's the only thing that wasn't necessarily worse; off meds, my hr usually jumps a bit higher. But I never feel so bad, physically, even when it does. I think it's a combination of standing still and the fact that some of your weight is supported by the table. You're not engaging the muscles in your legs as much as you would be if you were even just standing still, upright - and your muscle contractions play a big role in squeezing the blood back up to your heart.

Midodrine. It's the only thing that has ever stopped my vision from going black when I stand up. I take a 5mg dose when I wake up, around 6:30. It's pretty immediate; within 10-20 minutes, I can feel it kick in. I used to get the tingling scalp as a signal, but that seems to have worn off (I wish it hadn't! I liked it ). I usually just take the one dose, because I don't love the pressure that builds up in my head if I pop another. But I'll take one if my vision starts to tunnel too badly in the afternoon. That takes effect almost immediately as well. I'd suspect that you're on too low of a dose, if you're not feeling the effects of it after your 7am pill. I was on 2.5, 5 and 7.5mg at different points, and it was really easy for me to tell where my dosage should be. Kind of like Goldilocks . 2.5 I felt okay, 5 I felt relatively good, 7.5 I felt like someone was squeezing my head the entire day. You might want to talk to your doc about trying something higher.

Yeah, the Prozac info was definitely unsettling. It's not listed as a potential side effects (for prozac or for any other antidepressant that I looked into - it wasn't just prozac which seemed to cause SFN), but given the number of people who've experienced it, it obviously should be. Modern medicine...sigh.

Hi Bex! Welcome to the forum Hm. It sounds like I might experience the same thing. For me, I get the feeling from a string of 3 or more premature ventricular contractions (pvc) - aka ventricular tachycardia. My heart will flutter, my chest will freeze up and I'll want to cough, but I can't. It only lasts a few seconds - annoying, but not too bad. PVCs, in the absence of other heart conditions, are usually benign. The V-tach thing kind of made me nervous, mostly because it's one of those phrases medical tv shows have the doctors shout out before they shock the patient , but it didn't worry my cardio. Beta blockers helped me a LOT. I was having a couple dozen 'episodes' a day, but with metoprolol I have one or two a week. Do you have MVP? I know that I'm more prone to palps because of it. If you haven't already, you might want to go see a cardio and have them set you up with a holter or event monitor. Just to make sure there's nothing else going on.

Relatively recently, my feet started to get randomly hot. It reminds me how it felt if, back when I was a kid and played in the snow, I ran my freezing hands under warm water right after I came inside. Ouch! So I did a little research and the explanation which kept popping up was small fiber neuropathy. Great. So I looked into possible causes. And came up with 3. Thyroid issues. I was JUST diagnosed with thyroiditis a month ago - and my TSH was normal last April, so I don't know if the thyroid issues have been going on long enough to result in SFN. Most of what I read said that it was a result of long-term, untreated thyroid issues. Second potential cause is prozac. I found a number of people who claimed that the med gave them SFN, but for most the symptoms came on right after they started. I've been on it for a few years. But anyway, I'd been meaning to get off of prozac for a while so this was the final push. I've been off for a little over a month. I feel fine - but the burning feet are still here (some said going off prozac resolved their problem, some said it was permanent...I was hoping, but I wasn't holding my breath that this would fix things). Third is POTS...right? I know I've seen this topic on the board. Are there any concrete/likely reasons? Blood pooling is destroying my nerves? I've read some claims of spontaneous remission. Anyone here experience it? I'm going to my POTS neuro in two weeks, and I'm going to bring it up with her. Are there any tests that I should be looking into or anticipating that she might send me for? Skin biopsy?

In my opinion, your doctor should be open to putting you on thyroid meds. Placing the upper limit at 5mIU/L is outdated, anyway. In 2003, the American Association of Clinical Endocrinologists recommended treatment for people above 3. And way back in 2002, people were seeing that the normal upper limit tended to be around 2.5 (AACC.org - pg 34). There are a few more labs you may benefit from having done to make sure you're getting the correct diagnosis. After I initially tested high for TSH (just under 8, I think), I had my levels of free T4, thyroglobulin antibodies, and thyroid peroxidase antibodies measured. And when those came back indicating something was off, I was sent for a thyroid ultrasound. There's also a website called Stop the Thyroid Madness that has a lot of useful information. Definitely worth a look. eta - targs66 already mentioned the website. Oh, my brain.

That makes a lot of sense!

Perfect timing on this post - I started on synthroid this past Saturday. Hashimoto's, apparently - thyroiditis with elevated thyroid antibodies. Has anyone tried a gluten-free diet? From what I've read, gluten's molecular structure is very similar to that of certain thyroid elements and it can trigger the immune system to go after the thyroid. Wondering if anyone has tried it and noticed a difference?

I live in the north east (in the US) and I'll joke that pretty soon Alaska will be the only state I'll be able to tolerate year round. I feel so much better when my hands and feet are freezing cold.

I'm so tired of this. I'm 25. My body shouldn't be this messed up. But what is, is. I'm going for blood work again tomorrow, to double check - but everything's pointing to hypothyroidism. I know that a lot of people on the forum deal with thyroid issues. So, if anyone has any advice, I'd appreciate it. Should I make an appt with an endocrinologist? What tests should I ask for? Which synthetic thyroid hormone med are you on and do you like it?

I just want to say, before I get into this, that I TOTALLY understand and sympathize with where you're coming from. I think you've done a great job trying to keep your kids' lives stable. It's so hard to know what, exactly, your kids might need unless you've been through it. I spent pretty much all of my teenage years living with having a sick parent, and the last 3 years fixing the problems that resulted from not really having dealt with it back then. So. It's a subject that I've spent a lot of time thinking about. My mom was diagnosed with breast cancer when I was 14, and my dad relapsed on alcohol and went to rehab while she was getting chemo and having surgery. On the outside, I dealt with everything amazingly - but really, I was terrified. Like a lot of others have said, honesty is the best thing you can give her. The less I knew about what was going on, the more I imagined the worst. I didn't ask questions, no one really told me much about it because they didn't want to worry me. Keeping life stable and as 'normal' as possible is important...but teenagers are old enough to know when their lives aren't normal and if you're pretending, chances are they feel like they have to pretend too. I completely understand why you call your parents or brother and have them help out with the kids, and I don't blame you for it at all. But being sent away when you're at your worst is probably scaring the crap out of her. There are too many bad things that could happen while she's gone. Giving her more information about your illness - so that she knows she's not going to come home and find you dead - will help. Things that might seem obvious (like that you're not going to die), definitely bear repeating. I can tell you that I wish someone had forced me into counseling back then. I would have fought it - mostly because of the stigma that having a therapist means you're really messed up - but I needed someone to talk to. Someone who wasn't family. I couldn't tell my aunt that a part of me hated my mom for being sick...even though it was true. Even if she would have understood. I needed someone who was completely on MY side, someone I wouldn't worry would look at me like I was a bad daughter if I said something like that. Someone I didn't have to pretend to be okay for. If you get her a therapist (I really think it'd be a good idea - for your other child too), I wouldn't have it be the same one you're going to. She needs someone that she can feel is there completely for her, not for you - and won't tell you anything she says. That's not to say that having her come to an appointment or two of yours wouldn't be helpful as well, but I really think that having someone who's HERS is important. I think you're a great mom, with all you've done to make it easier for your kids. I really, really respect that. <3

I take fish oil, vitamin B, milk thistle, a multi vitamin and vitamin D. The vitamin D is the only one I really noticed a difference with. I had these random shocks that would run down my arms; they went away with the vitamin D. But my levels before I started taking supplements were nonexistent, so that's probably the reason it made such a big difference for me.

The thing is, they can't be of ANY help to their patients if they lose their license - or if the cost of their malpractice insurance hike and lawyers fees leaves them unable to pay the rent for their office space. Last I checked, the highest malpractice insurance fee was $120,000/year (though that was for OB/GYN, so GPs would be significantly lower - it's still a nice chunk of change). I don't think it's their pocketbooks which are the main concern for a lot of these docs (though it definitely is for some of them). A friend of mine who's in med school right now told me that during orientation, even the med school warned them that if they're there with the goal of making a lot of money they should consider going to business school instead. There is no good solution here. With the laws as they are, patients are better protected - but gold-digging patients who would sue at the drop of a hat keep the doctors from varying the established protocols, even when a case might warrant it. But if the laws were to change (which, at least in the US, will NEVER happen anyway, what with lobbyists and lawyers having so much influence in government), then we leave the patients open to abuses of bad doctors. It's frustrating.

This is something I've thought about from two angles. The patient (obviously), but also as a potential future doctor. I've gotten halfway through the application process - then decided it wasn't the right time - worked in medical research, and now I'm seriously considering applying to med school this year. Anyway. Because I read so many fantastic and thoughtful points made from the patient's side, I thought I'd step into the doctors shoes for a minute. And I find myself sympathizing with the docs a bit more than I expected to. Some are jerks, plain and simple. I had an experience with an EP that I posted about a few months ago. I still would like to slap him. But between insurance companies paying only a fraction of what they are billed and the threat of malpractice suits (where a doctor can be found anywhere from 1% to 100% guilty - but even 1% fault will have them red-flagged as having been convicted of malpractice), the doctors have to protect themselves. Unfortunately. If they could practice without that hanging over them, I think we'd have a better shot at finding docs willing to work with us. Because they wouldn't have to live in fear of us suing them if a drug we suggested they prescribe had some unpleasant side effects. Cardios and neuros are doing pretty well, financially, but primary care docs don't make a whole lot - not once you factor in malpractice insurance and the loans they're still paying off until they're 40. Anyway. My point is that the system makes it very difficult for a doctor to 'think outside the box'. Legally, their butts are covered if they follow the standard protocol for treating a specific symptom/disease. But if they stray too far from that and something goes wrong...they could lose everything. It's like that saying: Don't hate the player, hate the game. Except for 'players' like that EP I had. We're more than justified in hating doctors like them.