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Everything posted by scarfgirl

  1. I have never found a sleep aid that worked for me. They either a) didn't put me to sleep or b)made me feel groggy all day the next day. That includes antihistamines like Benadryl. I have found that taking Soma, a muscle relaxant, works really well for me so I take it at night before bedtime if I'm having trouble. Not only does it help me sleep, but I don't wake up in so much pain anymore. Of course my mom is worried I'm gonna turn into an addict because of it. At this point though I'd rather risk addiction than deal with her constant 11 a.m. phone calls asking why I haven't gotten out of bed yet. What pat57 said about needing less sleep on Ambien is interesting. Has anyone else noticed this to be true?
  2. For me, my heart way overcompensates for my blood pressure, if bp is even what it's responding to, so I have to treat the tachy first, and then treat any BP problems that arise. Attempts to raise BP while ignoring HR don't help me at all. But yeah, every patient is different. Your doc may be unsatisfied with his initial suggestion and is trying things from a new angle in hopes of better results. I would recommend asking him about the change in attitude though. Always best to be informed about what's going on in your doc's head.
  3. Oh I think the florinef is working and I'm heartened that it did so much for you. I guess I'm just frustrated that I can get so weak so quickly and that it takes so long and so much hard work just to build back up to where I was. My ultimate goal is to be able to live on my own (living with folks now) and at this rate I feel like I'll never get there. After so much hard work I thought my goal was in sight, but after only two weeks of feeling like crap I'd now be happy just to shower and feed myself regularly. So discouraging.
  4. Adjusting is so very very hard. Hang in there and feel free to come here as often as you need to vent/rant/ask questions/ask for support/etc. And I think you probably are at least a bit depressed, but that's A-OK considering what's going on in your life. Glad you have a therapist to talk to about these things.
  5. You know I saw an advertisement for the Sketchers (sp?) ones and thought 'I should look into that for me!', but then of course promptly forgot. Thanks for reminding me.
  6. I've felt puny ever since I went hiking with my dad. Texted my blood pressure and it was consistently in the low 80's systolic. Dr. put me on florinef and it's slowly rising but I still can't seem to get it together. I have a fairly simple schedule: Wake up, shower, apply lotion to face and arms, exercise for 30 minutes, watch Desperate Housewives for 3 hours on Lifetime channel. Not exactly a strenuous schedule and yet it's too much for me to handle. I'm so frustrated. I feel like my brain and body are completely discrete entities. Yeah I'm tired, and a bit dizzy sometimes, but I could still get things done if my brain would just let me focus on ANYTHING. Anybody understand what this is like, or have any suggestions as to how to fix it. I can't have anymore wasted days.
  7. Just as a warning, Adderall gave me suicidal thoughts and severe depression. Something to make sure you watch out for.
  8. Atenolol was easier on me than most BBs, but it finally quit working and I had to switch to Zebeta. Just like all BB's, it lowered my blood pressure and made my dizziness worse sometimes.
  9. LOL. I second the Wii! I think the problem with swimming is that because it feels so easy we overdo. Give swimming a try, but stop after a couple of laps and then wait and see how you feel the next day.
  10. Never really heard of anyone having a bad reaction or bad side effects of any kind to midodrine.
  11. Didn't meant to start this thread and then just drop out. Internet is a little dodgy in this neck of the woods. Is the Yahoo group thing something everyone's doing, or are people still wanting other alternatives? My Facebook profile is here if anyone wants to be my buddy there (for exercise, or just for the heck of it, I could use penpals while I'm stuck in the boonies) My e-mail address is here. I fell off the wagon for a few days, but got right back on despite a bad case of Holiday Blues. Go me!
  12. LOL. I can remember as a kid visiting with my grandmother and every time my brother and I came back from playing in the woods we had to strip down so my grandma could check us for ticks. Like I said before, I'm skeptical of the chronic lyme thing, but I am VERY interested in figuring out why antibiotics make a lot of us feel better and what that could mean. I'm glad John Hopkins is looking into it and I hope they find something interesting. I already have to take antibiotics whenever I get sick (doesn't matter what the sickness is) otherwise I never really get better.
  13. When I first started becoming debilitated by POTS I had a job that pretty much consisted of talking on the phone the entire time. So getting dizzy while talking was one of my first symptoms. It's from not getting enough oxygen. I have to have good blood pressure with a low pulse to be able to talk with comfort, and even then I'll run down after a while. I eventually went to a pain specialist to deal with the constant shoulder and neck pain I had. I now take a muscle relaxer, and I find that not only does it ease my pain, but that many of my other symptoms ease off as well. That fact makes me wonder if the tightness in my neck and shoulders is contributing to my system. Once the muscle relaxers do their job I try to use yoga, lots of stretching, and a posture brace to keep the pain at bay for a while, and to keep me from having to constantly dope up.
  14. You found Zoloft stimulating? That's odd. I'm on Klonopin, Zoloft, and take Ativan as needed. I still have bad anxiety sometimes, but at least I can sleep and I'm not in a total panic ALL the time. My depression is still here too, but I've only been on meds for four weeks so I'm still hopeful. I hate having to take Ativan all the time.
  15. When I'm having anxiety issues, I have nightmares where things are going wrong, like you said. When I'm in pain, I'll often have nightmares where I get beaten. Weird how you're body incorporates what's going on into your dreams while you sleep. Klonopin also helped me. I still sometimes wake up in the morning from a bad anxiety dream, but I don't wake up in the middle of the night from them anymore.
  16. Wellbutrin game me horrible side effects, but they only lasted for a week or so. I can understand why four weeks of having such problems would concern you.
  17. I'm as leery of Lyme diagnoses as I am of the Candida dx that is going around a lot right now. I'm not saying Lyme disease doesn't exist, I've known people who had it, but I don't buy this 'chronic' Lyme in people who never had the acute version, test negative on the standard test, and can't even recall ever being bitten by a tick. I admit I feel better when I start antibiotics, but no amount ever makes my symptoms go away for good, and after a while the side effects from so much antibiotic use start outweighing any benefits I was getting. Regardless of my personal opinion, I wish you the best of luck and hope you continue to feel better. Please do keep us posted as you progress through treatment.
  18. I understand how you feel too--I imagine lots of people here do. I'm 31, and still have to live with my parents like a child. Being sick *****. The news you got could be good in the long run, or it could be more bad news that you'll just have to suck up. Hang in there and keep looking on the bright side for as long as you can. If there's a tumor there then there's a really good chance you could get better.
  19. I'm so sorry you had to go through that. My only suggestions is pretty much along what Tearose said. Remind your primary that he had agreed to work with this cardio. Did you, or are you going to, tell your cardio about your neuro's response?
  20. If there's this many people interested, I'd prefer a Facebook group. But if not enough people are on Facebook, there are plenty of other ways to form groups. I'd still prefer a little something here, sort of a weekly shout-out where we can all report our major successes and setbacks. Also I'll look into different exercise tracking applications and see if there's something out there that can handle such 'variety', since hardly any of us will be doing the same sort of working out. I don't know about anybody else, but having something that can visually chart my progress really helps motivate me.
  21. Hi. My doctor wants me doing 150 minutes a week. I think I can beat that and my goal is 30 mins 6x a week (180 mins). I'm fairly self motivated, but it sure would be nice to have someone(s) to share my progress with. I don't care if you can only do leg raises while lying in bed, or if you're running marathons, just that you have a goal of some sort to reach for. Right now I'm using the WiiFit for all of my exercising, although I am trying to add short (like 5 minute) treadmill walks. Anybody in? Get a good jump on the New Years
  22. Hi. I don't think we've met. I'm sorry you're going through so much and I wanted to let you know that you'll be in my thoughts. and btw, you have a beautiful screen name. Happy Holidays
  23. Well that's interesting too, because I posted this summer about how great I felt while I was taking high dose estrogen (for infertility treatments). I also notice that during the second half of my monthly cycle my POTS symptoms worsen. That IS interesting. Maybe it's time I hop back on the pill.
  24. I hate saying 'heart valve defect' though b/c it's not really true. I mean, yeah I have one but that's not why I can't walk around or hold a job. And when I say MVPS people pick up on the MVP part and I hear 'oh but my cousin, aunt, etc...has that and she says it's not serious at all' I'm saying dysautonomia and people are just gonna have to learn to deal with big words.
  25. I second checking out the Kindle, or something similar. I believe you can change font size as needed, and that there's a lot less eye strain than reading on a computer.
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