Megan

I'm pretty sure there have been some previous threads on this topic. You should do a search for some tips.

You mentioned you only have periods 4 times a year now. The only relief I found was stopping my periods all together. I'm on depo provera, so I have no periods (haven't for a couple of years). I do have spotting sometimes, but nothing like my regular periods. I have mild endometriosis and depression, both of which were exacerbated by my periods. My POTS symptoms were worse, too, I just didn't realize it since it was before my diagnosis. As far as other tips, I never found anything else that helped. Good luck to you!

Meg

When I got diagnosed at Mayo clinic, I was told to try not to carry too much weight (I dont' remember if they gave me a specific limit) but I do know that if I carry baskets of laundry, etc, I get out of breath very quickly and it takes me a while to recover.

Meg

I am praying.

Meg

I have depression and anxiety, but I can't relate completely; I do not need anti-psychotics for my particular disorders. doctors have tried them, anyway, though, (I had a couple of bad drs who didn't seem to understand that mental disorders arent' just interchangeable...) and man did I have some crazy reactions. sounds like you've been okay on them, but I know I'm supersensitive to all meds, especially those, so be careful if you try to go off of them. I had side effects/withdrawal symptoms that dr's said were impossible. Make sure your Psychiatrist and whoever is treating you for POTS talk to each other so you don't do anything bad for yourself, and don't go off an antipsychotic if you really need it! I know that when I'm mentally off balance, it's much harder for me to handle the physical day to day stuff that comes with POTS. I do know that some meds for depression can help POTS if you have low blood pressure. (not sure if they lower the heartrate, though)

Sorry if this seems really rambly. Oh, and I'm on depo-provera (the birth control shot). It stops my periods all together. I had very painful and VERY emotional periods-with every cycle I became nearly suicidal. You mentioned PMDD, so I thought that might be something to think about.

Anyway, I can try to answer questions for you more clearly later if you want. I dont' nkow much about bipolar disorder or PTSD, but I do have the depression and anxiety and have for a long while before I got my pots diagnosis.

Meg

Definitely ask about disability offices. I didn't think to do so when I was applying for college. My school doesn't have an office, just a person, which makes it more difficult for me. Good luck with the whole process!

Meg

Congrats! I hope you continue to feel well!

Meg

Ami,

Thanks for sharing how much you've fought to have... It reminded me that I shouldn't give up, and that I deserve all the things any "normal" person might have.

Meg

I'm glad the whole ordeal is over with! I hope the port works well for Sara.

Meg

I actually got my diagnosis for POTS when I got sent to Mayo by a psychiatrist for drug metabolizing probs. I don't know what type of POTS I have, but I do know that I'm extremely sensitive to meds.

Meg

Oh dear! That does sound confusing. So why aren't your endos going with what Vandy said? Good luck figuring things out!

Meg

Ernie,

I'm proud of you for taking a stance like this. You are in my thoughts and prayers. Hugs!

Meg

Thanks so much for sharing. I teared up a little at the end. Even without a script I think you explained things really well!

Out of curiosity, do you always sit with your legs curled up next to you like that? I think I remember a previous discussion on it, but I almost always sit with my feet pulled up next to me like that. If I don't, I lose feeling in my legs.

Meg

Good luck!

Meg

Make sure you eat something before you take it, as it can make you sick to your stomach. As far as what it actually does, I'm not really sure, but I do know that it's helped my POTS symptoms immensely. Also, it's supposed to help without necessarily raising blood pressure.

Meg

Ami, I'm so sorry. Good luck tomorrow.

Meg

Not sure I can help you much, but I, too, have headaches every day. Actually, I've had a headache basically always for as long as I can remember. Some days I get migraines, but usually it's just kind of a dull headache. I've never had a neurological workup, but if yours was fine I'm not sure where you'd go from there.

Meg

I don't know, but I do have SAD. I have mild depression year round, but using a light box in the winter helps me a lot. Don't know that it's connected to any of my POTSy stuff, though.

Meg

Well, after a couple of meetings, I'm finishing out the quarter part time, without being kicked off campus or losing my scholarships (thankfully).

The suggestion was that I withdraw completely from this quarter, but I didn't want to lose the work I've put in when I've got a couple classes I'm caught up in. So I dropped a second class. Both classes I dropped I can take next fall.

As crazy as all this has been, my parents and I talked to a lawyer who specializes in disability stuff. We're going to make sure she has information and everything so if it happens again, we'll be ready. I'd hate to have to do that, but I don't want to be walked over, either.

I have an appointment with Bev in Toledo over fall break, so I'm hoping we can get some things worked out! Next quarter I have a lighter class load and no class until 10. Hoping for a better quarter!

Julie-I have not had psycho-educational evaluations. I guess I never thought about it. Definitely something I'll think about now. (And I don't mind the mothering so much. I hear the same things from my own mom )

Meg

I'm supposed to be weaning off of Klonopin soon, and I've been on it for YEARS. I haven't started yet because I've had to play with some of my other meds and I don't want to do too much at once, but I am a bit terrified of the process. When I get around to it, I may ask you about more details, if you're willing to share.

Meg

I do find that sometimes after a bad period of symptoms, after passing out and landing funny, or after spending a lot of time in bed (I'm usually able to do almost anything I want in moderation, except lately) that I have tight muscles. Massage helps with this, although I can't afford it and instead bribe my boyfriend with food for backrubs. :-) Chiropractic care also helps with the soreness.

Meg

I've never thought of that song that way, but now that you bring it up, I have to laugh out loud a little. :-)

Meg

Welcome!

I see a specialist-a cardiologist. I help coordinate my doctors so that my regular doctor knows what's going on and can do things like give me refills for meds if I need them and my cardio can't see me. There's a list of dr's on the dinet site.

I agree about the compression hose. Since you have high bp, they might be a better alternative.

Good luck with your appointment,

Meg

Thanks for all the responses. It's nice to know I'm not alone in this.

Tomorrow I meet with the dean's office again, and we decide my fate for this quarter. I'll be sure to let you know how that goes.

Julie-

Thanks for the link. The problem we're having now is that they are giving me accommodations, but they're not sure where to draw the line. I can get extensions on my work, but right now I have a couple of papers that are weeks late, and they don't want to be unfair to other students. (My thought is that things are already unfair...)

Right now my biggest symptom is brain fog-hard to explain to other people, and it's not like I can "push through it" which is why I have outlines lying around my room but no actual papers written. It's gotten better so that I'm able to read without much difficulty (for a while I couldn't, and being an English major, that's just bad) but writing still seems like it's almost impossible. I don't know what the limit is when they can say, well, we tried to help and she still didn't come through, so disabled or not we're gonna throw her out or fail her. Every quarter I have finished my work, although a couple of times I've been allowed incompletes. When that has been the case, I've finished the work within those time limits. I just can't always get it done in "normal" time.

I'm beginning to wonder if I'm just too stubborn. I know that many students, healthy or not, take at least 5 years to graduate, but I've got this little life plan. My boyfriend and I aren't actually engaged yet, but the plan is to get married the summer after I graduate. Not graduating on time pushes that back. I know that things would still be okay and that my guy would be understanding (though frustrated at first), but I just can't. At the same time, I've been dreaming of just being in bed and doing nothing else. So frustrating!

Sorry for ranting so much,

Meg

I didn't even have,my catecholamines measured, either. I was just diagnosed based on my TTT and my symptoms. (although it took a long time to get that diagnosis)

Meg

I have not heard of this, but it brings up a question. I periodically lose the ability to move (sometimes feel) arms or legs. Is this a POTS thing? I've always assumed it is, but maybe not?

Meg