Megan

The babies are so cute! Thanks for sharing. Meg

I'm glad things went well for you! Meg

I've been on Depo for a couple of years now (2? 3?) and I will say that right before and right after I get my shot I become extremely emotional. It's kind of like the 3 months of pms & rollercoaster emotions shoved into a week. I find, however, that it is worth it, since it's one less pill I have to take and has been working well for me. I don't know how serious your symptoms are, but you might consider waiting until after you receive your second shot to determine what's best for you; whatever the drs may say, you won't see all of the effects until you've had a second dose, at least. Also, I do have spotting every so often, but never anything heavy. I just carry pantyliners in my purse in case I have spotting. Meg

I'm working on finding a new PCP who doesn't think I'm a complete nutter; hopefully she'll be able to do regular check-ups, since I can only get in to see my cardiologist about once a year. The plan is to make sure the new pcp understands everything and talks to my specialist regularly, and I keep her updated, etc. Hopefully it works out... Meg

Of course every situation is different, but yes, I think we as a group do often have to fight doctors. I'm not sure about experimenting with meds...really be careful if you feel you must do it. Meg

I'm so sorry that you have to go through this. You should call and ask if you can get on the cancellation list. Is there a "lesser" specialist you could get into sooner while you wait? Meg

Mostly it helped with my brain fog, a ton. I also noticed that I felt more "normal" in that I could get out of bed more easily in the morning. I'm not entirely sure how to explain it, but when I miss a dose I notice a big difference in my overall feeling of health. Meg

I was diagnosed a little over 2 years ago, but I'm sure I've had it longer than that. It is frustrating. I just try to take things one day at a time. Meg

I am incredibly stubborn, and, at the age of 20, halfway through college, my peers are starting to make that break from their parents and gain real independence. So it's hard for me, because I really can't do that. Partially because I need to stay on their insurance as long as I can because of meds! Sometimes I feel like I just really need my mommy, and other times I make myself sick from trying to hard to do things on my own. I can get by when I have good days, but it's very difficult for me to feel like I'm mooching off of my parents when I really want to be able to do things on my own. It helps that my best friend and roommate for next year is very helpful...a combination of making me soup when I can't get out of bed to eat and taking away the cord to my computer if I'm procrastinating on homework. My boyfriend is helpful, too, and while we aren't engaged yet, we're planning our future together, and he talks about shifting responsibility to him from my parents. That's difficult for me, too, to think about always needing someone "on call." So, basically, I struggle with it a lot, but I find it helps when people know me well enough to tell (as much as someone who is not me can tell) when I am capable and when I really can't do anything. That way they treat me like a normal person when I don't need to be babied. I try to just think that people love me and that's why they help me, not because they feel obligated to do so. It helps a little bit. Meg

I'm so sorry you're dealing with this! Don't give up, though. Hopefully your appointment in 3 weeks will go well and you'll get on the right track. You're in my thoughts. Meg

It's been a lifesaver for me. Make sure she eats before she takes it, cause it can cause upset stomach. But other than that it's helped me immensely. Meg

Have you asked your current dr for suggestions? Maybe he knows someone who is decent in that area or can call and bump an appointment up for you. Just a thought. Meg

Jean, Not many suggestions here. I still have a tendency to break down in tears after hearing people talk. (Lately, professors who believe I shouldn't be in college because of POTS) The only thing I've found is that if I actually end up passing out in front of someone who is being a piece of crap, they stop with the whispering, at least temporarily. Not ideal, but it did get a few of my extended family members to shut up after I collapsed at a family dinner and scared my 4 year old cousin have to death. I happen to be a very blunt person, so sometimes I just tell people what I think of their whispering when they have no idea what I'm actually going through. Also not a great approach, and not for everyone, I know. Sometimes sarcasm is what gets me through it. Actually this is a handful of suggestions... I don't know if they are useful, but know that you are not alone. It is definitely one of the worst parts of this disorder. I often want to scream "If I was bleeding from the head, would that make it legitimate?!" Meg

Not sure about most of this, but I thought I'd throw in that being on proamatine as opposed to Midodrine helped me. Meg

Prayers that the doctors figure out what on earth is going on! Meg

Right now I know I couldn't go without meds. I don't think it would be deadly, but I would most likely end up in the hospital. I'm holding out hope, though, that I still may grow out of this, or at least some of it. So if I could be on less meds (I take 20-some pills a day) that would be great! If I were to go off meds, it would have to be VERY slowly, but I'm not ruling it out as an option eventually. Of course, if I have to stay on meds all my life, I'm okay with that, too. Just depends on the person. Meg

I'm so sorry! Hang in there. You are both in my thoughts. It definitely is frustrating when you can't even get fluids...doctors act like I'm asking for some kind of controlled substance and not just a saline IV! Meg

What antiarrhythmic do you take, if you don't mind my asking? I'm not currently in need of med adjustments (I don't think) but I like to hear what helps other people in case that does happen. (and it usually does at some point) Meg

I'm studying abroad in London June 20-Aug 2, and Dr. Grubb recommended that I see Dr. Sutton if I have any issues while I'm there. I was wondering if anyone had seen him or knew anything about him? Thanks in advance! Meg

Alicia, I don't have Meniere's disease, but my dad does. He doesn't have many symptoms anymore, except for the hearing he lost, because he got some kind of injections in his ear. I get migraines. A lot of the time I'll take Excedrin and take a nap, and if that doesn't help figure it must be POTS symptoms. I've kind of stopped trying to determine what is caused by what. If I'm dizzy, I take meclizine (I don't know if you take it, it was one of my dad's main meds when his meniere's was bad) and I try not to worry about whether it's a migraine symptom or POTS. I just take care of myself the best I can and treat symptoms one at a time. Figuring it out is just too much stress! Meg

I've taken phenergan for migraines and such in the past. It makes me kind of silly and really sleepy, but I'm pretty sure that's a normal reaction and I've never had any other reaction. I can tolerate Meclizine, though, and take it as I need it, so I don't know if you would react differently. Meg

I take Klonopin (although I actually do have anxiety also so I think I take more than it sounds like others take-I take it morning and night every day) and I take melatonin as well when I need help to sleep. My former psychiatrist said he didn't feel Klonopin was a "real" drug and that it was mild, so he wasn't concerned with me taking it every day. I'm not sure that's really an accurate portrayal of it...but anyway, that's what I do to help me sleep. I haven't really slept well lately, but I'm guessing it has to do with recently finishing finals. I hope you get some good sleep! Meg

Well, a big symptom was the fact that I was passing out a few times a week. A lot of it was things the doctors observed, like my feet turning gray when I stood for a period of time, my blood pressure dropping when I stood (which showed on my ttt). Also, being hyperflexible helped convince the dr's that it's what I had, since I guess it's a sign you're more prone to having it. I went to Mayo Clinic for something entirely different and ended up being diagnosed, so I guess to a doctor who knows what he's talking about it was pretty obvious that my symptoms matched POTS. It might help to take some information from the internet with you to your appointment, especially if you can find stuff written by specialists. Another thought, did you have a sweat test? I'm not exactly sure how it works, but I had one when I had my TTT and it showed that I didn't sweat properly in some places, which helps with the diagnosis. I hope you can make sense out of this. I'm feeling kind of brain-foggy! Meg

I'm not sure about the cost of cerefolin, as I'm still on my parents' insurance, but Dr. Grubb prescribed it for me when I was having a lot of trouble with brain fog. When he mentioned it was the first time I heard of it. I've found, though, that if I think a med will work, I may not outright ask for it, but I'll ask if he thinks it will be something to consider. Sorry it took me so long to reply! Meg

I'm on Depo and while I do have an occasional light period, for the most part I am period-free. I hope it works out for you. Meg