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imapumpkin

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Everything posted by imapumpkin

  1. i usually take my metoprolol with lunch but once i was out of town for the weekend and we did brunch instead...at four thirty my heart was hammering and i couldn't figure out why. when i remembered the forgotten dose i took it and started feeling better soon afterward. last week i had a brain fart moment where i couldn't remember if i'd taken my dose or not at lunch so i took a half just in case i had in fact already taken it. i did so well on half a dose that the next day i figured i'd try it again. nope. by 10 pm my tachycardia was back in full swing.
  2. Nuun tablets are like airborne...you put them in water and they dissolve into a drink that has all the electrolyte and hydration benefits of gatorade but none of the sugar that might upset your stomach and rot your teeth. Places like Sam's, EMS and other sports stores carry it, some drugstores have it and you can get it here: http://shop.nuun.com/nuun-active-hydration. Midodrine is supposed to help retain blood volume to boost BP. something else i've found helps my energy is b12 shots. my integrative medicine doctor prescribes them. they are expensive and not covered by insurance, but i feel so much better when i take one.
  3. my neurologist said she has some POTS patients who drink 2 tabs of NUUN a day and don't need medication. I drink one 16-oz water bottle witha NUUN tab in it and feel a great deal better for the hydration. just a thought!
  4. in my experience-- YES. I talked about my experience with candida here and here. I noticed a big boost in energy when treated with nystatin and am currently on a VERY modified candida diet since I couldn't physically handle the full on diet as it was too extreme for my system. Right now I avoid all foods with actual yeast in it (all breads, pizza, etc ) as well as anything major that would contribute to yeast, like mushrooms and foods high in sugar (like all the yummy goodness of dessert foods). When I'm faithful to the diet I notice I feel much better than when I do have lots of sweets that feed the candida. Because of the holidays I was eating desserts much more than I normally allow myself to and I definitely feel like it's thrown me off course. I am currently in the process of getting back to the strict diet. so yes, for me candida makes things worse because on its own, a candida overgrowth causes increased fatigue
  5. jan- i actually didn't say that i personally have built up a tolerance, i just said that tolerance and dependence can happen very quickly when taking benzos regularly. i absolutely have a chemical dependence on them. and the only times i feel its effects are if i take it during an episode of anxiety or a panic attack. other than that i don't feels its effects as i take a tiny dose right before bed. i sure notice when i forget to take it, though. abbyw- as far as just going with it because it's working for me, that's kind of what i've been doing for the past few years and mostly i'm okay with it... however, i am uncomfortable with the idea that i need to take something every day and 100% need to have access to a pharmacy and prescribing doctor at all times because if i were to go somewhere for a few days and either run out or forget my klonopin (i have to travel with LOTS of meds and supplements) it would be really bad for me. i really don't like the idea of being on something indefinitely that can kill you from withdrawal-- i'm not saying that it will, but i'm not comfortable with the fact that it could. i'm very responsible and make sure that i give myself ample time for refills but things do happen, prescriptions get messed up, insurance problems happen, and i don't like having to worry that i might find myself unable to take my next dose. i would one day like to not have to worry about my chemical dependence on it. in addition, i plan to have children in the future and while i do know that some people take their benzos and SSRIs during pregnancy, i would at least like to have the option of going off of them to ensure as healthy a pregnancy and child as possible. just my own personal feelings on the matter.
  6. taking a benzo really got my anxiety under control in my teens. honestly klonopin has been really helpful for my anxiety, but no one ever told me when i went on it (at age 17) or any time since that you're not supposed to be on them long term because your body builds up tolerance and becomes dependent after only a few weeks. they're really addictive and now, ten years later, i have no idea how i'll ever be off of them because benzo withdrawal syndrome symptoms can last years. i am also very sensitive to meds and currently take a quarter of the lowest possible dose pill and i can still feel its effects. it also definitely lowers my BP which isn't terribly helpful.
  7. i have to get carbocaine which is without ephinephrine. it usually works just fine for me. i think once i needed more than one shot but the second one didn't really hurt because of the first one.
  8. i dunno if this counts as sick, but last spring i had a UTI that turned into a kidney infection going on for weeks (i always have urinary symptoms so it was hard for me to tell that i when i was having UTI symptoms) and one of the first things i noticed was that my heart rate was much higher than normal even on my beta blocker, like 105 at seated rest. i called my cardiologist to see why my HR would be so high despite the metoprolol and then the antibiotic for the UTI and the nurse said if there is a bacterial infection in your body that your heart has to work overtime to help fight it off. A few days after my antibiotic finished my HR returned to normal...at least normal for POTS that is. also, you said you were stuffy and sneezy with a runny nose...have you taken any cold medicine? Most cold medicines and antihistamines are contrandicative for people with dysautonomia because they make tachycardia worse and i was told i need to stay the heck away from anything with pseudoephedrine (like Sudafed).
  9. So I keep reading articles about how getting too much sleep and leading a sedentary life is more harmful to your health than getting not enough sleep. To some extent I just feel like this is another health and wellness scare hysteria that might be being overexaggerated, although of course I am concerned that my need for lots of sleep is increasing my risk of poor health (unrelated to POTS obviously). The way I deal with my fatigue is, if my body is telling me I need the sleep, I sleep. Mostly I get about 9 hours a night, but sometimes 30-60 minutes for or less. I don't see the point in peeling myself out of bed after 7-8 hours of sleep just to feel miserably exhausted all day as opposed to just very very tired. Overall I'm concerned that the severe restrictions on my physical activity (can't really exercise, sitting for a big part of the day, lots of sleep) from my POTS is going to cause other problems later on. How are we supposed to stay otherwise healthy when we're stuck with a sedentary life?
  10. So I am very chemically sensitive to medications, and hormonal birth control is no exception. I've been on the same pill for almost ten years (not only for bc but for period regulation and acne) but in the past few years for no reason my skin has gotten terrible, we're talking constant back to back cystic acne breakouts and I can't take it anymore. I just found out the pill I'm on often makes acne worse rather than helping it at all! So I'm looking to switch but I know it's a huge gamble bringing a new hormonal med into the picture. People with drug sensitivies, which birth control pill are you on? (Sorry it has to be a pill for me) I'd love some suggestions that I can research and talk to my OBGYN about. Thanks!
  11. I have a very bizarre but severe sensitivity to opiates. The first time I was given the smallest dose of morphine, it felt like I got an intensely painful electric shock up my arm from the injection site, up to my neck, and then spread down my limbs to the rest of my body, and then I felt twitchy for the next several hours. The nurse at the time said she'd never seen a reaction like that; it clearly isn't an allergy because those reactions take longer to occur and this was instantaneous from when she injected it. When I had surgery last year, my first night in the ICU I endured several more of these reactions when the nurses would inject me with some other morphine-related opiate painkillers. By the first morning after my surgery, they said no more and I spent the entire rest of my recovery being treated with high-dose ibuprofen. OUCH. What kind of surgery are you having? What I found most helpful in terms of pain-management was lidocaine adhesive patches at the incision site, but depending on what type of surgery it is that might not be an option.
  12. I have been holding back on making a post about this for a while because often whenever I post about an improvement, things start to backtrack for me, or whatever I find is helping me loses it's effectiveness after I rave about it. Weird and supersticious, I know but also mostly true. For the past 5 weeks I have been drinking 16oz of water with a Nuun tablet in it each day. My POTS doctor (Neurologist) recommended drinking 16oz of water plus a tab at 8 am and again at 12 pm but given my overactive bladder, I just physically can't do that because I would literally never get anything done as I'd be in and out of the bathroom every 10 minutes. My doctor says that on this regiment, some of her patients are able to be completely medication free, which is huge. I quickly went out and bought some Nuun and tried it. I'm happy to say that it has made a HUGE difference in my energy level. I'm not exaggerating; these past five weeks are the first time I've felt human in two and a half years. I do not feel miserably tired. I do not have to peel myself out of bed at 2 in the afternoon because I still feel exhausted. I have more mental clarity and less brain fog than I have in a very long time. The change in how I feel is remarkable and I am so thankful that I found these tablets. HOWEVER. This afternoon I had an appointment with my integrative medicine doctor. He has other POTS patients and has actually never heard of Nuun. I brought in a tube for him to look at. He said he was really happy to hear that I was doing much better and remarked that in the 15 months that he's been treating me, this is the healthiest I have ever looked to him. He did however say "I wish this didn't have polyethylene glycol in it." I asked what it was and he explained it was a preservative but that it's often associated with antifreeze. He obviously wasn't concerned enough about the PEG to advise me to stop taking it, but being the generalized anxiety-ridden girl that I am, I started googling it when I got home. I hadn't realized that PEG was what was in Miralax (which, by the way, explains why the Nuun totally cleans me out on a daily basis. No complaints on the regularity, but your technically not supposed to take miralax for more than 7 days) and there are all kinds of things on the web about the toxicity of PEG. I guess I'm asking for other people's experience with Nuun because even though I think it is an absolute GODSEND (and believe me I don't use that term lightly) I would at least like to be more educated about the possible toxicity of something I'm putting into my body on a daily basis. Again, I'm assuming if my integrative medicine doctor was that concerned he probably would have said something and advised me against it, but the alarmist in me that never goes away it having a low-grade freak out about this. Any thoughts??
  13. I get this all the time, and for me it's definitely a borderline hypogycemia and I've had it my whole life. I have to eat every couple hours and I don't go anywhere without a granola bar or some crackers in my purse. A good thing for blood sugar is peanut butter because it's protein and has sugar. I also read somewhere that magnesium helps balance blood sugar.
  14. Sorry you are having a rough time. I would defnitely recommend looking for a therapist who specializes in Adjustment Disorder, since having chronic illness is a huge adjustment and comes with it's own myriad of depression, anxiety, frustration, etc. I don't know how your insurance works, but maybe if you like your current therapist you can find another in addition to help with your POTS stuff? When my POTS first flared I was seeing a therapist for anxiety, but she really didn't have any tools to help me cope with a chronic illness, and frankly, didn't really have much compassion or understanding about days I needed to miss sessions because I wasn't well enough to get thereor had a doctor's appointment. I switched therapists and I am much happier with my current counselor. A lot of what she helps me deal with is the frustration and depression and sadness that comes with dealing with the loss of my "normal" life before POTS. You're not alone. I have good days and bad days, and some days I just feel sad and awful all day about all the things I can't do, things I'm missing out on, things I used to do but can't anymore...and days that I'm so tired that I cry for hours because I so desperately want relief from being sick and fatigued. I acknowledge that I might have to deal with this for the rest of my life, but what gets me through the day is the belief that maybe I won't. Maybe tomorrow will be the day my body starts to right itself. Maybe next week my doctor will suggest something that helps me feel better. I know it's really REALLY hard to be positive but the possibility alone of one day getting better is something to work towards and strive for.
  15. I am very chemically sensitive and did fine under General for my surgery. I think I had some sort of issue where my blood pressure dropped but it was from someting else they gave me. Under moderate sedation I got very VERY nausous but not general. Make sure they know yoursituation and keep you extra hydrated!!
  16. Glad to hear you are doing better! I find that I feel slightly better on days that I put on real people clothes (instead of just bumming around in sweats) doing my hair and putting on my makeup. I don't think they make me in any way physically better in terms of mind over matter, but I feel more normal if I'm dressing the way I would normally before I got sick, if that makes sense?
  17. Heatandsoul-- Sorry you're having such a rough time of it! Tbh i'm surprised your doctor waited so long to get you antibiotics. When I said that I "still" have crazy overactive bladder, I mean this has been an ongoing problem for the past 6-7 years and not just following the infection. In fact the reason the infection got so bad was because I'm so used to insanely frequent urination that I didn't realize I was having uti symptoms. My overactive bladder issues bring a myriad of problems-- I never ever feel like my bladder is empty. Sometimes I get urgency, but it's more of just always feeling the need to pee. and not much is voided...I feel like I have to strain to empty my bladder and even then it doesn't ever feel there's completely empty. Urologist is stumped (and rather unhelpful) and integrative medicine doctor thinks it's interstitial cystitis (chronic inflammation of the bladder) tertiary to whatever problem is causing my POTS. Essentially there's nothing for me to know but deal with it.
  18. I've been doing much better now lately. Still have crazy overactive bladder but my energy has been super boosted by drinking 16oz of water with a Nuun tablet daily. My neurologist says that some patients who do two Nuun tablets a day (8 am and 12 pm with 16 oz of water each) don't even need meds!
  19. I've noticed that my hands start to get tingly because obviously you're breathing quite differently than normally. I think what I experience is like a hyperventilation deal. Also my bp is often much lower afterwards (which is typical of anyone, not just people with POTS). Definitely take things slow!
  20. my neurologist/POTS doctor always recommends starting with 5 min on a recumbent bike and very, very gradually increasing time/intensity as tolerated, but never more than 20-30 min at a time. the recumbent part helps because it does get your heart going, but it also helps strengthen the lower legs which is where most of us need to work to keep blood from pooling, but you're also not working so hard against gravity with an upright machine or walking/running. for me personally, i find that exercise never ever helps and only hurts if i'm having a particularly sick or tired day, so I never ever trying to "push through" on bad days, The only days I find it helps me is on days that I'm already feeling a bit better. On days I feel like I can't exercise, I sometimes am able to walk around inside a grocery store or target or something (obviously outside if the weather permits) to at least keep me moving somewhat, even if it's not technically cardio.
  21. http://www.ncbi.nlm.nih.gov/pubmed/16683488 Here it is! It's called Mitempfindung (unfortunate name) or "referred itch".
  22. I don't know if this is what you experienced, but there is a lot of "cross-wiring" that happens in the brain when it comes to sensory nerves. For instance the pleasure and pain place in your brain for your leg might be directly next to that spot in your chest that hurt. I have had plenty of times in my life where I will accidentally poke or scratch an arm and feel a corresponding sensation in my leg, or poke my thigh and feel in it my back just as you described. Technically speaking that's why there's such a thing as a foot fetish-- the pleasure centers in the brain for normally arousing feelings is directly next to the feet area of the brain. So yeah, crosswiring does happen!
  23. thanks for the response!! i'm not **too** worried because if they sell this stuff in a jar on the shelves (it's bertolli sauce) that anyone can buy the alcohol content has got to be minimal...still i don't like to risk anything by having any alcohol at all. i always get a little worried because i've never reacted well to alcohol even when I could drink (I really was never a drinker anyway) so I'm just hoping whatever vodka was in the sauce mostly burned off?
  24. Okay this might sound like a stupid question but I don't drink and don't know much about cooking but I just helped myself to a big old bowl of penne alla vodka because everyone's always told me "the alcohol cooks off" so I don't need to worry. Out of curiosity I happened to google it just now and it turns out, all the alcohol does NOT cook off, only some of it is evaporated in the cooking process. Given that I'm on metoprolol, klonopin and lexapro (all very low doses, but still) and shouldn't mix them with any booze, should I be worried I just ate something that's going to make me worse?
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