Mrs. Burschman

GROSS!

I don't know anything about pituitary tumors, but I just wanted you to know that I understand and sympathize with your fear. There's nothing worse than awaiting test results. I hope you get answers soon. In the meantime, take good care of yourself. Do things you like to do. I know it's impossible advice, but try not to worry yourself sick. Sending you a hug! Amy

Hi Leslie! Welcome to the forum! And believe me, though the symptoms and intensity may vary, we all know where you're coming from. I'm like you, in that I have been diagnosed with interstitial cystitis and irritable bowel syndrome (though they now are calling it inflammatory bowel disease, even though I've never had bleeding.) I KNOW that they're both nerve-related. I also have migraines and polycystic ovarian syndrome. Like you, I'm a collection of chronic complaints! That's great that you have a doctor who's so willing to work with you. Seeing an autonomic specialist should help, too. I moved not too long ago, so I'm between doctors right now. Have you ever tried an SSRI antidepressant? I'm just asking because Paxil has been an IMMENSE help to me -- not for psychological reasons, but for physiological. When I don't take it, my hands and feet tingle, my pulse gets out of control upon standing, I have severe nausea, vomiting and diarrhea, and I have constant adrenaline rushes that feel like a panic attack that won't end. Paxil seems to "turn down" the volume on my autonomic nervous system. Off of it, I can't function. On it, I have a mostly normal life (though I sweat a lot, just like you, and you're right -- it's embarrassing!) Obviously, I'm not a doctor, but I just wanted to mention SSRI antidepressants because it seems like we have a lot of the same issues. It's something you might want to ask your doctor about. I know that a lot of other people on this forum also find SSRI's or SNRI's very helpful. Good luck, and once again, welcome on board! Amy

I drink beer too (although I usually stop at one.) I seem to get tipsy really fast. Not sure if that's the POTS, or if I'm just a lightweight.

I said 10 years, because I first started having dysautonomia sympoms in my teens. Officially diagnosed at 31. In between, I just kept having diagnoses added, but I think they all link back to the dysautonomia.

I think your sister is the one who needs a therapist. No offense.

Ugh! That sounds HORRIBLE. I think I probably would have been sick, too. The heat (and humidity) really do me in. Hope you feel better soon! And that it cools off, but given that you're in Florida, that might be too much to ask for. Amy

Lucky! (I'm happy for you!) Amy

I am sorry for your loss. I certainly don't think it means anything for your treatment or future. Amy

I would guess (and I'm just guessing) that it's because blood pressure and heart rate are only two of the multitude of things "run" by the autonomic nervous system. Those might be normal, but other stuff could be off. Just a guess. Amy

Mine was 80 over 50 one of the last times I went to the doctor, and I felt fine. I was NOT feeling so hot when I was in the emergency room with a ruptured ovarian cyst and it took them four times to even find a blood pressure. My arms and legs were going numb. Mine normally is 110 or so over 60 or so. I "black out" easily, especially on standing. Amy

Thanks for sharing! I love Dave Barry.

Yup. Embarrassing. I lose my balance really easily and stagger around.

I did feel better on BCP (because they raised my blood pressure,) but I stopped taking them because I get migraines with auras, and BCPs raise your stroke risk if that's the case. I took Alesse, or whatever the generic version was. It had lower amounts of hormones than some, so it caused me fewer hormonal problems such as breast tenderness. Good luck! I noticed right away that I started "blacking out" more when I stood up when I quit them. Oh well. Amy

Baths can help, too. I'm usually fine in the shower, but if I wasn't, I find that sitting in a bath, and then laying back to wash my hair, makes me less symptomatic. Amy

Good luck! We're here for you. I wouldn't be surprised if your symptoms get a little worse for a while. I know that stress can make mine worse. Not to mention moving! I hope all goes well, and your future is brighter from here on out! Amy

My brother had gastroparesis, which meant his stomach didn't empty. He had horrible stomach pain and lost a ton of weight. He's almost six feet tall and got down to 140 pounds. It took a while for him to get diagnosed. He took small doses of amitryptiline, a tricyclic antidepressant, and it eventually seemed to get better on its own. I'm convinced that he also has dysautonomia, just to a lesser degree than I have. I have gut pain, but it is related to my digestive system. Amy

I don't have any personal experience -- sorry! But I'm pretty sure that I wouldn't do too well. Pain makes my blood pressure disappear, arms and legs go numb, black out, the works. If you decide to, good luck! And go someplace reputable! Amy

OK, well maybe it's not just that I'm a weenie, then, if you all have similar reactions!

Sometimes, when I look down, it looks to me like the floor is sloping. It's especially bad if I've been standing for a while. All the fun of being drunk without the drinking, I guess!

For that matter, you can have PCOS, no facial hair, and regular insulin levels. I'm thin, no facial hair, normal hormones. But ... I have ovarian cysts. And metformin makes my periods regular (I was going without for months at a time before.) I've read that in some people, it might just be the ovaries that are sensitive to insulin. Your insulin levels can be normal, but it's still too much for the ovaries. That's what it appears to be in my case. Amy

Excellent! I'm so happy for you! Amy

Oh no! I hope you aren't a chocoloholic like me! That would be awful!

I'm pretty sure that happens to me, too. I black out for longer if I'm getting up from a lower position. If I were sitting on a tall stool, I don't think the change to standing would affect me as much. I have no explanation why that's the case. Amy

I don't like coffee (smells great, tastes terrible) but I drink a TON of hot tea. Probably nine cups a day, though I reuse teabags, so probably three tea bags for those nine cups. I feel better when I drink a lot of water, and the tea warms me up in my cold office. The caffeine seems to bother me less than not drinking enough. And tea is supposed to be very good for you. Amy