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Libby

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Everything posted by Libby

  1. Dangerous Grains Looks like I read it in a book. There doesn't seem to be much formal study on gluten withdrawal - which kind of baffles me b/c just doing a simple google search on gets thousands of hits w/ people sharing their experiences. But this book claims that up to 70% of celiac patients who remove gluten from their diets will have symptoms of withdrawal due to the opiate-like characteristics of gluten proteins.
  2. I'm pretty sure it's physical. I think I bookmarked the info, I'll see if I can dig it up.
  3. I think that's exactly what's going on. Blood is being diverted away from other areas (like your brain) in favor of your digestive system. It's a normal process (like people wanting a nap after a big dinner), but POTS complicates things. As always. I get light headed and spacey. I'll black out more often when I stand up. I'll get really cold, too. My fingernails turn blue, especially if I was somewhat cool/cold to begin with. Then they're practically purple. It'll tinge my lips too, if I'm having a really bad day. I look like death. It's attractive. Taking a dose of midodrine or pulling out my electric blanket are pretty much the only things that help.
  4. Just to further emphasize how everyone's different, they actually reduced my fatigue. Or the right beta blocker did, I should say. I tried 3 betas - propranolol first (hated it, I could barely lift my head), then metoprolol and finally (and currently) toprol xr. My fatigue improved on the last 2 beta blockers. Not a huge amount, but it was noticeable. My heart is finally able to fill completely before it contracts, which means more blood flowing through my system. I actually went on them for PVCs (and tachycardia, but that was my doc's afterthought lol - definitely not mine). It helped SO much. I go days without having any PVCs now, when before if I went 15 minutes it was a miracle. If one doesn't work for you, don't be afraid to ask to try another. Propranolol, like I said, was awful for me - but it's great for other people. Metoprolol and Toprol XR are the same med, metoprolol, but Toprol XR is just the extended release form. That made a big difference for me too.
  5. You haven't tried meds? Forgive me if I'm missing something but...if you haven't tried it, how do you know it will make one thing better and another worse?
  6. I remember reading that there's a withdrawl period of sorts when you go off gluten. One woman said that her son literally was licking the kitchen table after the family ate because he was so desperate for it. But once you get over that (a few weeks, I believe), then it supposedly really helps. I've been toying with the idea b/c of both POTS and my Hashimoto's - the thyroid hormones have a similar structure to gluten, so eliminating it may stop my immune system from going ape **** on my thyroid. But the idea of giving up bread just makes me so, so sad.
  7. Hi joyagh! It's definitely possible to have POTS but still have a negative tilt test. The primary purpose of the test is to diagnose vasovagal syncope. The negative/positive label only refers to whether standing triggered a faint (or pre-faint symptoms). I know that a lot of POTS patients do not faint during the test - statistically, I think most don't. The test is indicative of POTS if your hr rises 30+ bpm or to above 120 bpm within the first 10 minutes of tilting.
  8. I've only glanced at the 23andme website, but if they're giving you the nucleotide coding sequence, something to keep in mind is that there's a 'wobble' factor with DNA coding. There are 64 possible codons (3 nucleotides in a row, which code for an amino acid in a protein), but only 20 amino acids. You're going to have a few codons which will end up giving you the same amino acid. So if you had GCT and the 'normal' genotype is GCC, you're still going to have a normal phenotype (a normal protein) b/c both GCT and GCC code for alanine. Also, even if you have a missense mutation (a mutation which results in a different amino acid being substituted), it might or might not decrease the function of the protein. That section could be spliced out (i.e. an intron) or it could substitute an AA which is similar enough to the original that it doesn't really impact the protein folding, leaving it functional. Generally, you have a better chance of keeping the protein functional if an AA of a similar charge (positive, neutral, negative) is substituted in. On the other hand, the mutation could be in a critical region of the protein and render it useless. It really depends. Annnnnd now I'm going back to studying for my MCAT. haha
  9. You're not anemic? That surprises me; most women, even with normal iron levels, seem to be. Hemoglobin needs an iron cofactor (to bind oxygen), so very low iron puts you at even greater risk. You may be on the verge of developing it. Once the iron stores are gone, RBC production slows way down. RBCs have a 3 month lifespan, so eventually that turnover rate will start being greater than the production rate. If you combine the iron supplement with vitamin C, that might help. It prevents iron from binding to other molecules that you can't absorb and just passing through you.
  10. So the salad thing is common? UGH. I really liked salads.
  11. I had a very nice, light salad today, about 8 hours ago, that my stomach has just started to empty itself of. Now that I'm done wishing I'd just throw up and get it over with (and then two seconds later praying to God that I wouldn't, haha) I thought I'd ask you guys about your experiences with this aspect of POTS. The nausea that comes with my stomach not emptying is so different from any other kind of nausea I've ever had. It's borderline painful in how intense it is...and I almost never end up throwing up because of it. But with how shaky and drained it makes me, it's almost as if I had. I just wish I could pinpoint the exact causes. At least for the bad episodes where I'm basically useless for 2-4 hours. Slowed emptying, I can deal with. A few ginger chews or a glass of ginger beer and I can at least function. I know for sure that very rich, heavy foods will full out delay my emptying. But this time it was a salad (with a small amount of light balsamic vinaigrette dressing). Not like the waffle (stupid, stupid me) that had me curled up in bed sobbing a few weeks ago. Misery loves company, so I thought I'd ask you all about your experiences.
  12. Good! Glad to have helped. Blech, blackouts are annoying. I mean, there are worse things than blacking out for 5 seconds, yeah, but that cruddy feeling lingers for at least a couple minutes...and then when you're getting them every time you stand up, things add up. I can say that midodrine is by far the most effective thing I've ever done for those. The only other thing I would say about it is be careful not to take a dose too close to when you go to sleep. Without midodrine, my bp is around 90/55. With it (sitting/standing) it's around 105-110/70. Lying down is higher (because your body is supposed to stop stimulating the muscles around your blood vessels to prevent this, but can't with midodrine there), it goes up to around 115-120/80. I actually feel fine when I'm lying down now, and I can take a nap no problem (and I definitely do, haha), but I remember that early on I felt a little like my head was stuffed with cotton. Pressure-wise. It didn't hurt, just felt mildly uncomfortable. And it made trying to get to sleep kind of hard.
  13. I do what hholmes does. One dose in the morning (5mg) with my adderall and beta, and that's pretty much it. I'll add another in the afternoon if I'm transiently blacking out when I stand up. Or if I can feel the blood pooling in my legs/they ache when I stand up. Or if I know I'll be out late or standing a lot. It really depends. I take it as needed...I just need it every morning, lol. If I didn't black out on standing (especially in the morning), I wouldn't have any problem with taking it every other day or whenever I needed it. It's fairly quick acting, doesn't really need to build up in your system... For me, the tingling is similar to what you get when someone runs their fingertips lightly across your skin, or plays with your hair. I really like it. I'm kind of disappointed that it's worn off a bit after a year of being on midodrine...I know I'm weird, haha. All of it happens because midodrine is an alpha 1 agonist. Alpha 1 receptors are found in smooth muscle, like the muscle which lines your blood vessels. They're not found in your cardiac muscle, so there will be no extra stimulation there, like there would be with an adrenalin surge. If anything, you more likely get bradycardia b/c your bp is up and your heart thinks it can slow down. The piloerector effect is because the muscles at the base of your hair follicles are smooth muscle. Normally, when blood vessels contract it's to conserve heat (which explains why midodrine makes me so darn hot). Same thing with goosebumps - back when we actually had fur, the muscles would contract and raise the fur up a bit, trapping a layer of air that acted as insulation. So no, you shouldn't get the same side effects that an adrenaline rush would give you. Midodrine appears to be fairly specific to just the alpha receptors on vascular smooth muscle. It also does not cross the blood brain barrier, so there are no central nervous system side effects.
  14. Gah. Stupid doctor. I'm sorry you had to deal with that. I've never heard of anyone using a tuning for like that before, to trick you into saying something that's medically 'wrong' so they can tell you you're crazy and feed you xanax. Ridiculous.
  15. The one and only time I've called my doc for help outside of an appointment was because of florinef headaches. I'll tough almost anything out, but those things made me want to gouge my eyes out. Mine started after we upped my dose initial dose, same as Katybug. It took about a week, week and a half for the headaches to come for me, though. I'm wondering if, because you stayed at the initial dose, it just took longer for it to build up in your system to headache-causing levels.
  16. I'm taking an MCAT class and today was, among other things, the kidney and the endocrine system. When we got to aldosterone, the instructor asked what it did, where it did it, how, when it's useful, does it concentrate urine, what about salt, how does that affect blood pressure, blood volume, etc. I rattled off the answers to all the questions, using terms like hypovolemic without really thinking about it, and the teacher's just like 'have you taken a renal course?'. Nope. But I have taken Florinef. LOL.
  17. I can do 10 minutes of pilates, as long as it's on the floor, a couple times a week. I can also ride my bike 2-4 times around the block before I start to feel too nauseous to keep going. It's hard to believe that 2 years ago, I could go to the gym for the afternoon and spend an hour and a half on the elliptical without feeling half as dead as 10 minutes of pilates makes me now. Crazy.
  18. I'm on 100mg once a day. It's a complete godsend. Primary doc was the one who originally put me on it in spring of '07. I was at 150mg/day until my POTS neuro convinced me to drop it down to 100 about 8 months ago to see if that helped decrease my fatigue (did it? eh, maybe). Couldn't go lower than that without feeling like crud.
  19. I was, in high school, and I know of one other POTSie who was on it too. Just curious if any others have been on it as well.
  20. Double ugh. This happens to me all the time (my leg/s - three times in the last hour. ridiculous). I don't mind my arms as much. The dead weight is a bit unnerving, but they never seem to hurt. My legs, on the other hand. OW. owowowowow. Even the slightest movement while they're 'waking up' is excruciating. I'd never really associated it with POTS, but it makes sense. Unfortunately, I haven't come up with any solutions - compression stockings tend to make it worse for me, especially after I've worn them for a few hours - but I do have some links to the few relatively cute stockings I've come across. http://www.rejuvahealth.com/ and Juzo colored stockings Hope that helps!
  21. Hm. I've been hoarse pretty much daily over the past 6 months. I had just assumed that it was my thyroid, but now I wonder.
  22. I'd say that you can't really know if it's right for you until you give it a try. Dr. Blitshteyn knows what she's doing, in my experience - and she's a POTS specialist, not just a GP who has no clue what POTS even stands for. If she's reviewed your case and thinks it'd be worth a shot, why not? My beta blocker has been a godsend. And florinef has helped so many people. They're not right for everyone, but you can't know what group you fall into until you try.
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