houswoea

I'm sorry. It's sad that all this is happening.

It's not wrong to want to know what's really going on. As my neurologist at mayo would say, "doctors can diagnose, but only God heals." I like that attitude because it's true

But it doesn't make me want to know less, or feel less sad when I feel ignored by doctors. Some are intimidates by hard cases. And I think you qualify as hard!

Keep looking. Maybe something will turn up. You'll make it! Just keep trudging.

Sorry to steer this thread in a little direction but ,I always wondered it works to go to a place like Mayo. You get a treatment plan and take that to your own doctor? How do you know they will follow the plan? Also if you're out of your state does you insurance pay for Mayo?

Steer away! For me it was less about finding a working treatment plan, but investigating the cause of the problems in the first place. My doctors at home pretty much said "I can't help you, go to Mayo and don't come back until you do"... in nicer words of course. They have since happily followed all the instructions the Mayo Clinic sent to them since I've been back. And I live in state, but I don't think it made much difference insurance-wise. I thought it was very reasonably priced. Considering.

You should allow a similar amount of time.

I've been there three times and am confident that my current treatment plan is the best.

Did it really take more than just a day or two to follow up? I can't imagine there is much left to even test me for. Why did it take so long for you? I don't even know why he wanted me to come back, he just said, "well, I'm going to schedule you for a visit three months from now so you can come back and we'll see how things are." and so I guess I'll go, but I'm not sure why.

I don't know how long to plan to be in Rochester. I live in MN, so it's not a big deal if I don't get it right, but it would be nice to have an estimate.

When I was first there it was about a week. But for a follow up visit and some follow up tests, it shouldn't take that long, right? Has anybody done this?

thanks

liz

I don't take any of those but I have problems with hair loss when my symptoms are at their worst... don't know why

Can I express my frustration that EVERYTHING INHIBITS THE REUPTAKE OF SEROTONIN? Booooo serotonin.

Every time I start feeling extra awful, later I come to realize it's because I'm taking something that does it but it's always things that doctors are telling me to take like sleeping pills and pain pills!! Even my medication for tuberculosis acts as as an SSRI!!! And cold medicines, and my narcolepsy pills (they say they are unsure, but theorize it may). Why don't they WARN me before I take these things?? Don't they know?

I'm a tad bit angry at modern medicine these days. I'm sure many of you have dealt with these problems for a long time now, and you're not complaining. But I thought I'd rant to the ones who understand.

Thanks for listening.

:'( But I want to teach! I love to teach! I will be so sad if I never get to do it!!! I know God's plans are ultimately better than anything I can understand, but I will still be sad if I never get to teach.

Ken,I don't understand why you have to wait that long. I got an appointment in four months. What's the deal??? I don't think something is working right somewhere along the line...

Ick. That doesn't sound like remission to me...? Sounds like not fun.

I am no medical professional, but I don't react to all medicine, just some. I think that it has something to do with a chemical/hormonal imbalance. When I take things that mess with it even more, it freaks out my body's way of coping with the problem. (for example, I react to pain meds but not beta blockers and tylenol).

Like I said, I don't really know, but that's be my guess.

Wow, that's very interesting! Thank you for sharing. This makes a lot of sense since many kids with ASD have food sensitivities and stuff like that. So if a child with autism is diagnosed with mastocytosis, will medication for the mast cells help the behaviors of autism? Or is the damage already done? Just curious...

Hey now, it's a balmy 60 degrees Fahrenheit up here in Minnesota! We're breakin out the short sleeves!

Thank you all so much. I'm still in the stage where my plans for the future do not include POTS or whatever is going on inside me.

I am taking Prozac, which I'm not sure is the right thing for me. It turns everything up a notch, if that makes sense. They wanted me to take that instead of lexapro because of my age?

The best decision I've made since this started was to find a counselor. She's certainly helped with this problem tremendously.

And yes, if I didn't have God on my side, I would be dead already. He's saved my life a few times, so I'm supposed to be here for now! "If God is for us, who can stand against us?" I think that includes dysautonomia, doctors, and everything else

Hello friends,

I used to have a lot of hope that things would get better for me. But I'm nearing a year and a half since I first got sick and there's not much left. Things seem to get worse and worse, and I lose more and more... I can't have a job, I can't go to school, and I have seen all the doctors I can see to figure out how to make things better.

I know there are many out there with similar stories, but much longer experiences! Some of you have been dealing with this for years and years!

So please, somebody tell me a story about how things get better... how they found the right doctor and how they found the right treatment and how they can live on their own or live with roommates who are not in constant fear...

hope never fails, and even if I never get better than this, I know there is a reason and that I will impact lives. I just want to hear about overcoming this hardship... please?

Uh, not much to add to the info here...

just thought I'd say that I went to nutritionist because I couldn't gain weight and he put me on protein and plant fat pills. He said that way I would at least have the raw materials my body needed to survive if I was having a period when I couldn't eat. I can't really say if it's worked because of other problems I've had lately, but you may want to consider it?

yes-- very overwhelming and hard to describe...

When I saw the "expert" at the specialty clinic, he said that gastro symptoms were not a part of POTS. He said that people have attributed it to POTS but it really was just a coincidence.

So... I guess my question is: is it just a coincidence?

you could try a different brand of ssri if you really still want to take them. I'm not sure things are going to change if you just keep taking it.

Why the CBT? What is that supposed to do for you?

Wow! I thought I was underweight, but if I was BMI 14 (and some indicate they are) I would only be 85 pounds! I'm pretty sure my bones all weigh more than that haha!

But to answer the question, yes I have ridiculous trouble gaining weight, I just can't!! Every time I try and it works it all comes off plus some more. People are always asking me if I have an eating disorder I know people who are heavier often feel socially unexpected, but I feel this way too. I can't find clothes that fit. All my doctors attribute my issues to my (lack of) weight.

They always say "well, why don't you just eat?" and I just want to be sassy and say "ohhhhhhhhhhhhhhh, eat eh? I knew I was missing an important step in my life!"

I get frustrated, but no one ever wants to hear about how hard it is to gain weight, even though everybody talks about losing weight!

That's my ramble for you. If you figure out a way to get some back, let me know. I really hate that I can't wear any of my clothes.

Well thanks everybody! I haven't seen anyone about the vision stuff yet because the last doctor I told thought I was just anxious

I'll have to look into the sleep thing... I don't sleep well because of the SSRI I'm taking, maybe that's it!

Thank you all so much!

I'm getting really frustrated with my eyes lately. Everything I see is kinda glare-y, like when you look at the sun too long and after you can see again everything is bright.

But mostly, I'm worried about the stupid "flashes" or "stars" and since none of my doctors can help me, I'm pretty much on my own to figure out why this is going on.

Everything I read online says it's from movement stimulation in the eyes (like pressing on them or something), but I am assuming since it happens to POTS people when we stand that it also has something to do with blood pressure?

I'm asking because now I see them even when I'm laying down. They don't go away anymore.

I'm at my wits end with all this. I want to go back to school and get my teaching degree and teach kids those beautiful special needs kids! I miss it so much! I want to hold a job and live with roommates who aren't terrified of my medical issues.

I also want a doctor who isn't intimidated by my medical problems and that will help me and not just send me away. Or say that I'm nuts.

Ah well... God know what he's doing.

Thanks for the help.

Last year I was hospitalized many times for 'seizures.' Since they weren't epileptic, I had more psych consults than I could count. I kept trying to explain that it was clear that it was a neurogenic problem, and they kept sending me social workers and doctors who asked if my parents had beaten me. And they refused to do anything about the seizures; I'd be having one and there'd be some guy sitting next to me stroking my hair (or trying to) and telling me it was okay, the bad things was over now and couldn't hurt me anymore. I was conscious during these episodes and if I would have had control of my body I would have slapped him.

What the crap! That had to be frustrating. And you can't really do much about it because getting angry proves you have issues and not talking about it proves denial! (okay, that's just my experience) But wow, I would be so angry!

when I took tramadol for the first time (it's a pain medicine, but it's an SSRI still) I also felt the lift in mood but had weird side effects. The next time I took it, there was no happyhappy time and all terrible side effects. Seriously, I thought/ wished I was dying. serotonin can build up quickly in the brain I've read, so watch out!

and yes, that's happyhappy time not a typo

Yeah, taking tramadol has been like a nightmare that I can't wake up from... I can't sleep more than two hours a night, my muscle spaz out all over I can't really look at things because my eyes and head hurt so much and I have to force myself to eat once a day but I am just so sick it's like torture.

The pharmacist and the doctor say I should just deal, but I think I'd rather jump out a window or set my hair on fire than continue. It worse than all of my worst episodes combined.

But the doctor's solution was to up my dose of prozac because he thinks I'm nuts. Because I was freakin out because I haven't slept in like over week. So I'm not sure what to do. I feel like I will kill my brain if I take more, but I could be wrong... anybody ever go through this before?

I do not... medical professionals do not think I have any thyroid problems (my holistic doctor does but... eh, idk.

I'm thinking maybe I'm having some sort of medication problems but I don't know which ones lol! I didn't take any this morning and I can walk again and open my eyes and stuff!

This POTS stuff is wayyyyyy more disabling than they make it out to be.