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Everything posted by Notgivinup

  1. I havent been on here for well over a year or so. I just wanted to stop back in to tell you guys that while I had POTS your support was invaluable to me. I've been symptom free for a very long time. I wanted to give some of you hope that it can get better, even go away. I had POTS for three solid years. I don't ever consider myself cured, as I know it can come back at anytime.The medications that seemed to turn the tide for me were 90mg. cymbalta AND klonapin. Almost as soon as I upped my dose of cymbalta I felt better. I can do about 98 percent of the things I used to do. Heat still gets to me a little, and some of my cognitive functions aren't quite what they used to be, but I'll live with those. Please never give up! You can look back at some of my old posts to see what different things I had tried. Peace and prayers go out to you all.
  2. Thanks so much for your post. Yes, this sounds just like what I have been experiencing, including the muscle tightness and shoulder knots at the end of the day. I was also really thirsty and very dry mouth. The idea of becoming addicted really scares me, because there are some serious addiction issues in my family. How long did you take it before you tried to stop? Did you have to wean off it slowly? Now that you have been off it, do you ever crave it? Thanks again for your post. It's really making me wonder if it's worth trying to continue it.... especially since it didn't really clear my thinking, it just put my brain fog in over-drive. I'm not sure what to do. Hi, I can't remember exactly how long, I think I was on and off of it for about 5 months. (My memory is still really bad). As far as craving it now, no I don't. I do think I weaned off a little bit, then just quit, and dealt with the withdrawals. Took about a week to feel back to normal. The main reason I don't crave it is because I remember very well the terrible empty depressed feelings after it wore off, that was the worst for me. Again everyone is different. If you can find the right dose, probably half of what you were prescribed, and don't feel the need to keep increasing, then maybe it will help you. However hearing what you are saying, it doesn't sound like the pro's outweigh the cons. Another thing, you'll need to drink even more then ever and probably add some magnesium. Stimulants deplete mag. faster.
  3. My experience with adderall. Same as you. Energy, speedy brain, going from one thing to another. No less brain fog, but felt better in general. Doc put me on 10mg. extended relief twice a day. Good points, got me out of bed. Had more energy although was too scatter brained to really get things done. The bad stuff, muscle tightness eventually leading to big shoulder knots. I believe all stimulants are dehydrating. I couldn't drink enough to counteract the diuretic effect. Also, for me, I was instantly "addicted" to the dopamine high. When it finally wore off at the end of the night, I would have a bad comedown. Felt depressed, hollow, and wanted more! Needless to say,after many different tries, messing with the dose etc. I quit. And it wasn't fun coming off of it either. Took about a week to feel better, normal POTsy. So, just be careful, it works for lots of people just fine, I'm just telling you my experience.
  4. As some of you may have read, I've been in a remission of sorts. Last night my son said he was itchy all over. I found some little red bumps. Looked them up on google images, and they look like pox to me. I was wondering what implications this might have for me. IF I catch it, will it throw me into a POTs hole? I did have CP as a kid my mom said. Wondering what if anything I should do.
  5. Lissy, I believe it's only been 2-3 months? I'd have to look back when I last posted because it was the day after that things got better. It doesn't sound like a long time, however 2 or 3 months of EVERYDAY feeling good feels like forever. When you are soooo sick for so long, (3 yrs.)and you start doing things again, you just can't believe you get another day, then another one. It's like OMG, things that were impossibly hard to do seem so simple now. Peace and Love Edited to add oops, this was suppose to go under Lissys post!
  6. Hi guys, I haven't been on in a while. Last time here was when I wrote to tell about my horrid appt. with a new neuro. Since that day, oddly enough, I began to improve. He told me to see my shrink. I left crying and disappointed once again. I KNOW this wasn't all in my head, but I saw my psychiatrist anyway because I was due for my 3 month med. check (the very next day). We decided to increase my cymbalta to 90mg. I started feeling better immediately. I feel pretty normal most days.The only thing that I feel isn't quite back to normal is my cognitive abilities. I do still have to watch heat, and I don't consider myself cured, but this is the longest stretch of time I've gone feeling good. I don't know why, I don't know how, and I still don't know the underlying cause for my POTs, despite 3 years and many, many tests. I wish I could tell you guys I did something different, or tried a new medication, but the truth is I just don't know what made me turn the corner. Milk? I started drinking. Upping the cymbalta? Resigned myself to stop fighting so hard? Prayer? Relaxation/meditation? These are the only things I changed. I don't know if I'll slip back. I know cold and flu season is coming, and I fear that could do it. But right now I'm just enjoying having most of "me" back again. I just wanted to post this to give everyone HOPE. I had given up. Even though I said I never would, that last doctor visit just did me in. And FWIW I got sick at 43yrs. old. NOT young, so anyone can recover. Peace and Love to all my friends.
  7. Updating. Still feeling good. My period hit two days ago and I'm a tad bit lightheaded, but ok. Still have to be VERY mindful of the heat. On the hottest days I stay in, or it will affect me. Otherwise I'm a million times better. Still drinking two or 3 large glasses of milk a day. And eating pop tarts, lots of them. I'm on 90mg cymbalta, 2 klonapin,1 morning, and 1 before bed, and zyrtec, 2 a day. That's all. Yesterday I woke up, got out of bed and started doing stuff around the house. I totally forgot I was sick! I even forgot to take my meds. Of course as soon as I remembered I took them. Anyway just wanted to put some hope out there. I've been dealing with this for going on 4 yrs. maybe it can go away. Of course it's always in the back of my mind, that it could come back full force. I'm trying to stay in a positive mind set.
  8. I don't know, but I wrote in another post that I've been drinking tons of milk and feeling better/good. Milk has a high iodine content. I never knew that, and have no clue of the connection, if any. I just tried to find where I read about the iodine content in milk. The page had a chart. I can't find it anywhere, perhaps I was mistaken, or read it wrong.
  9. I have two bricks under mine. Can't say if it's made a difference. It IS uncomfortable, but I've gotten use to it now. I'm just keeping it that way in case it's doing something. It's suppose to increase blood volume, how I can't really understand.
  10. Todd, seriously please if you try the chocolate milk let us know if it even makes a tiny difference. Milk DOES have complete protein lots of vitamin D (which we all need), calcium and IODINE. I have no idea how iodine fits into this equation but it has lots of it. I think it has something to do with thyroid hormones.
  11. I totally agree with you on the naturapathic doctor. He's not really helped me at all except for finding me a good quality magnesium supplement. The worst part is I signed a year contract with him. I have to see him once a month and it's $50.00 a month! Uggggg. I signed up a few months ago when I was desperate for help, and so fed up with conventional doctors. Desperate people will do desperate things. My brain fog was so bad that day too, I just remember not being able to think clear and he told me it would be so much cheaper this way. I wish there was a way I could get out of it. Honestly we, like everyone else are in debt already. I could use that money much more efficiently. Oh well.
  12. Thank you guys so much! I feel the love here. Not a more compassionate bunch of people anywhere! And Tod you're right, I've also been trying to find "correlations" for yrs. There probably aren't any. My only thoughts on the milk is that I seem to be retaining it better, and I am hypovolemic, so maybe just having more blood volume? IDK.
  13. I hesitate to write, as I fear jinxing myself. I don't consider myself "cured" anymore,(as I've gone thru this before) but as I write this, and for the last two weeks almost, I've been feeling pretty near normal. I am beyond ecstatic to have my life back for how ever long it lasts. I'm enjoying every moment of it. I took my son swimming, to the park, etc. I've even been able to grocery shop! I hate the grocery store. I haven't changed anything except for upping my cymbalta. Oh, also I've been drinking a ton of MILK of all things. Chocolate and plain. Probably doesn't have anything to do with feeling better, but it's funny because my naturopath told me to stay away from dairy! Oh well, I've always loved cold milk, but was drinking sooo much **** gatorade I didn't have any room for it. This illness ***** so bad in sooo many ways, but boy does it make you appreciate life when you feel good. So for now I'm thankful. Next week, who knows.
  14. appt go? Are you back yet? Let us know. Been thinking about you.
  15. Count me in for muscle pain. Mainly neck/shoulders. Coat hanger pain, they call it. Maybe not enough blood/oxygen getting up there? IDK. Or the excess adrenaline constricticting muscles. It's pretty constant with me. Muscle relaxers make me feel crappy. A good massage would be great if only I could afford it.
  16. I just got some spray. It helps.
  17. Is it an endocrinologist that I would see for MCAD? I've been feeling a bit better. I started zyrtec TWICE a day again and zantac, which I haven't taken for many, many, months. It's not that I have any stomach issues, it's just that I read about histamine in the stomach, so I started it. As you may or may not remember, Bev at Dr. Grubb's office said it sounded like I might have it. Then I went to a dermatologist for him to look at the spots on my back and he blew me off completely. Wouldn't even do a scraping. I don't get hives or reactions to anything. No flushing either. But the treatment seems to help. Just wish I could get a yes or no answer. Thanks
  18. "Well you walked the whole way back to the exam room, you got weighed and you seemed fine". How horribly rude, presumptuous, unprofessional,and just downright WRONG. I've had the same experience, when I asked a nurse to do my vitals standing up. I overheard her in the hallway talking to another nurse, she said in a whispering tone....." She made me take her B/P standing. It doesn't matter if they're sitting or standing". This was at a cardiologists office. I was sooo angry I wanted to scream at her. But I said nothing. That was early on in my dx. I'll NEVER keep quiet again. I'm sick of it.
  19. Jamie, Thanks so much. Lots of good info!
  20. Bumping this up. My symptoms started exactly two yrs. after pregnancy. I had a bad pregnancy but no POTS symptoms. Then I had a 24 hr. virus, and a minor car accident in which I wasn't hurt but very traumatized. ( A semi hit me while I was at a stop sign, my almost two yr. old was in the car). It was only a couple months after that my symptoms began. I am also light skinned, green eyes.
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