Jump to content

jump

Members
  • Posts

    356
  • Joined

  • Last visited

Everything posted by jump

  1. Hello all, For the first time I saw really excellent doctors who were extremely knowledgeable about POTS, as well as kind, attentive and helpful. If you live in the NH area, and you're looking for good care, please feel free to get in touch with me and I'd be happy to share more about who I saw. These doctors read my entire file, asked me detailed questions, did not make me feel stupid or like I was a hypochondriac, and they made good suggestions for steps I can take to try and feel better. It was far and away the best doctor experience I've had in my entire life. Yay! I'm so happy to finally have good care! - a relieved and grateful Jump
  2. hi, I have POTS and hypothyroid disease, and I am always, always cold. But sometimes I am more cold than others; there's no question that when I am more POTS symptomatic, I am usually either more cold or I spike a small fever. Standing also makes me cold. I think the coldest temperature I've ever had was 94.5, and I considered going to the ER (although I didn't). You might want to look on-line or call your doctor and ask how low merits an ER visit, just to be safe. Even though I know my temperature is somehow related to my POTS (I've had hypothyroid disease for over ten years, but this really low body temp thing only came on when I developed POTS symptoms, about five years ago), I do think thyroid plays a part. For example, for the past six months or so, my body temp was routinely 96.5. I assumed this was just POTS, but then it turned out my thyroid levels were just an eensy bit off. Two weeks ago I tweaked my medication, and now my body temp is usually 97.9 - a BIG improvement. So I wouldn't rule out getting your TSH checked, even if you think it's ok. Other than that I have no real advice - I usually just take scalding hot baths, drink a little red wine, and wear ridiculous amounts of clothing until I warm up. I have heat packs for my feet, but they're usually always cold anyway. I have several pairs of fingerless mittens that I wear constantly from September to June. And LOTS of ski socks.
  3. it looks like this has mostly been covered, but my two cents.... I do eat gluten-free and it does make my POTS symptoms better - but I suspect this is only because I have a known gluten intolerance. It's kind of like with my thyroid disease - if I'm not taking the right meds for my hypothyroidism, then my POTS symptoms also get worse --- but if I didn't have hypothyroidism, taking thyroid hormones wouldn't help my POTS symptoms (obviously). If I'm eating gluten, POTS gets worse (probably because the GI issues lead to dehydration). I suppose it can't hurt to try a GF diet and see how you do, but I'd recommend getting tested for celiac disease/gluten intolerance before you start. That way, if you do in fact feel better, you won't have to go back to eating gluten to get a proper diagnosis. But I suspect a GF diet would have limited positive effect if you don't happen to have a co-morbid gluten allergy of some kind.
  4. don't rule out food allergies and intolerances, either. untreated gluten, lactose, and sugar intolerance can manifest as vomiting.
  5. Hello all, I just read that hormonal birth control & supplements (the pill, the ring, depo shots, etc) can cause wacky BG and insulin resistance in some individuals. Usually, it causes normal fasting BG and insulin readings and abnormal non-fasting readings. Something to consider if you're having problems with this!
  6. I would say I always feel symptomatic when standing still, but I don't always have a noticeable tachycardia. Sometimes I'll be standing, and I'll be feeling unwell, but my hr will be only about 90-100, or sometimes even as low as 85. I would say at least 70% of the time I have actual standing tachycardia, but then there are some times when I don't. I do, however, always have some combination of dysaut symptoms, whether it's chest pain or fatigue or being out of breath with exercise or digestive issues. If you're worried, pursue it with your doctor, but I do think it's possible to "just" have POTS and still have the most troubling problems not be tachycardia. Plus, I've found that over time I've become used to the tachycardia, and I don't always notice it. Whereas some of the other symptoms (especially fatigue!) I can't really get used to. It may be that you don't notice the tachycardia as much, but the swallowing - which I imagine would be hard to ignore - is more difficult to "get used to."
  7. 1. How long did your doctor tell you it would take you to fully recover from Pots Syndrome? (if possible, please state answer in years) My doctor did not talk about recovery. 2. How many medications do you take daily to help you deal with Pots Syndrome? (please count only those prescribed to you for treatment of Pots Syndrome & then just state a number) Currently, 0 prescriptions and 3 OTC supplements. 3. How long do you exercise per week? (please state your answer in minutes per week) 150 - 240 (usually closer to the 240 mark) 4. How many grams of salt do you ingest per week? I have no idea! I usually put about four shakes of salt from my shaker on every meal I eat, plus I usually have one salty snack (like chips) a day.
  8. Vitamin D deficiency can also make your blood glucose levels wacky, usually looks the same as pre-diabetes on paper. I had high BG readings for months, and was really worried I was somehow getting diabetes despite being young and healthy (besides the POTS), but once I was taking D supplements for a few weeks all my readings went back to normal.
  9. Vit b has changed my life! Folic acid (one in the b-complex) is used to treat symptoms similar to POTS in over-trained athletes. Heart palpitations and standing tachycardia is also a symptom of B deficiency. I started taking B just incase my problem was really a deficiency (it wasn't) but it DID really help me. It helps with my energy levels and I think it helps a little bit with palpitations/tachycardia, too. But it helps with energy a LOT. I vote to try it again!
  10. Gosh, thanks for sharing!!!! My boyfriend wants to go camping and suggested we take this -- I was worried because I'm gluten-intolerant and although it doesn't say it has wheat ingredients, a lot of additives have gluten in them. I thought I might try it while I was at home, so if I had a bad reaction I could stay in bed/be close to a bathroom. But now I think I'll just suggest we find an alternative! We're "car camping," so it's not like we have to bring packable food. I think I'll just stick to things I already know don't make me sick.
  11. Thanks so much for sharing!!!! It sounds like you finally got some solid answers. I've been pestering my doc about DI for a little while now, and she keeps saying, "No no, it's one of the most common mis-diagnoses among POTS patients. You don't have DI, you just have POTS." But I was having trouble believing her -- hearing your story, though, makes me more apt to think she might be right.
  12. I've been having this sensation like I'm falling, or like I'm in motion, when I'm not. Sometimes it's so strong that I actually think I am fainting, and I kind of "black out" visually for a split-second, only to find that when I "come to" I'm still standing up. It's a very uncomfortable sensation. Sometimes it happens when I'm sitting, and the sensation is that my chair is somehow moving, like someone picked it up with me in it to move it across the floor. Again this is usually accompanied by a very short visual disturbance. I more frequently get the "falling" sensation when I'm standing or walking, which makes me think it must be POTS related. It actually very disturbing and leaves me feeling disoriented. I wonder if this is like what people experience when they have vertigo? I have noticed that some of my other POTS symptoms have been worse this week, so I wondered if it was all related. Can anyone relate and/or shed some light on what might be causing this?
  13. Have you recently refilled your paxil perscription? when I was on SSRIs I would get the exact sensation you described if I changed my medication dosage or missed a dose, but I ALSO got them once or twice when I got a new bottle of pills. My doctor said she thought the medication must have been slightly different - evidently pills are allowed to have up to 10% different materials. But, if nothing has changed with your meds and you haven't recently filled it, you might want to call your doc and see her sooner. I think meds are often the culprit for this kind of symptom, but there must be other things that cause it as well. Has anything else changed in your life recently? Are you doing any new activities, taking new vitamins, trying new foods?
  14. Actually I found having a psych diagnosis made things easier. It meant that when I said "Nooooo, I KNOW what depression feels like, and this is not depression" they couldn't really argue with me. Having had problems that were primarily psychiatric in the past made it easier for me to explain how I knew my POTS symptoms (like fatigue) were different - I could articulate the difference in how it felt, physically. This really helped my doctors understand and they didn't dwell on the psych side of things at all, except to occasionally check in and make sure my physical illness wasn't negatively impacting my psyche.
  15. This is a little off-topic now, but in regards to the initial post, I just wanted to say -- eep! Remeron is contraindicated for POTS, OI and other autonomic disorders. No wonder it made you feel worse!
  16. thanks guys! I feel better about this now. I'll bring it up with my doc next time I see her just to be sure, but I think probably she'll tell me not to worry about it, and now I won't.
  17. Before I had any kind of treatment for POTS, I relied on coffee to relieve some of my symptoms. I can't tolerate it at all in the morning, when my tachycardia is at its worst. But before any kind of treatment, I would often have very difficult spells of bradycardia in the afternoons or evenings - my hr would drop to 45 or 50, and I would get very, very cold. My hands and feet would turn purple and get so cold that I couldn't write or use my hands very much at all. My lips would turn purple. When this happened, caffeine in the form of a hot beverage helped a LOT. Now that my tachycardias aren't as severe, I find my bradycardias aren't as severe, either. I still can't drink coffee in the morning (gives me a stomach ache and makes my heart race too much), but I occasionally drink it in the afternoon with no ill effects. In the winter I often have freezing cold hands/feet/extremities, and then I do use caffeine to warm me up again. Caffeine has never helped me stay awake or helped me be more alert. I use it solely to get my circulatory system going again.
  18. I've been on a low-dose combination pill for several years and I LOVE it (I think the generic is called Kariva; I take the brand name, which is Mircette) - but I tended to have the opposite problem, that of too light periods. My sister, however, couldn't handle any pill, and her situation sounds a lot like yours. But now she does really well on the ring and swears by it. If you've tried different Pills and don't feel good on them, maybe try the ring. Unfortunately, hormone treatments are very individual and it's kind of a trial-by-error situation. But do your research -- ie, if you tried a high-dose Pill and felt sick, try a low-dose. If you've tried the patch, but didn't like it, try something different. I think it's high time someone figured out a more scientific way to help women find something to help them keep their hormones in balance, but, until the medical world delivers, just keep trying things til you find something that makes you feel better. Because of my sister's experience, I'd recommend starting with the ring and taking things from there.
  19. OK, I read up on PPH and now I'm really worried, but I think I might be being a hypochondriac for real this time, so I could use all your input.... I had an echo done in 2005, but wasn't diagnosed with POTS until 2008. My symptoms had been getting worse during that time. When I was dx, I had a 24-hour holter monitor test and a pulmonary function test, but no other heart tests - no stress test and no second echo. I'm worried I might actually have Primary Pulmonary Hypertension because I took ephedra (type of diet drug) for several years (probably 1999-2003), which is now banned because it can cause "heart problems." I never bothered to look up what these possible heart problems could be, but when i recently researched it it turns out the "heart problem" this drug can cause is PPH. Then the other reason that I'm worried is that I have this constant chest-pain that is still unexplained, and I get high blood pressure and breathlessness when I exercise, all of which has been getting progressively worse even though my tachycardia has gotten better. My doc has always attributed this to the POTS. Part of me tells myself not to worry because if I had PPH it would have shown up in my first echo, right? Even if it was milder then? I'm not entirely sure my doctor knows I have a history of taking diet pills, because she became my doctor after I had already stopped for a few years... I like to think I remembered to tell her, but I'm really not sure. Ugh. I know I should probably just ask my doctor all this but I'm already trying to convince her to test my adrenal function which she doesn't think I need because my potassium is normal, and she refused to order an echo when I was diagnosed with POTS because I had had one three years previously that was fine. Sometimes I feel like I have to pick my battles with her when it comes to ordering tests, and I don't want to ask for another echo if I'm just worrying for nothing..... I suppose if I had PPH and not POTS, my hr wouldn't go up when I stand, right?
  20. Are you recently diagnosed? If you've never taken thyroid medication before then it's very, very normal to feel worse after starting. Your body has been trying to manage without a necessary hormone, and it's kind of adjusted itself somewhat to not having it... then you start taking it, so the body has to re-adjust. Also, for many people with hashi's, when they're first diagnosed their thyroid is usually still producing a small but inadequate amount of thyroid hormone. When you start taking this hormone orally, your thyroid glad usually does one of two things: stops all hormone production (in which case you feel MORE symptomatic than before, and often means that the next time you see your doctor you should increase your dose), or, conversely, goes into some kind of strange, death-throes over-drive (there's a scientific term for this but I forget what it is), causing you to be temporarily hyperthyroid and have all the corresponding symptoms to that (tachycardia, anger and irritability, sleeplessness, intense hunger). Both situations are very common -- so keep an eye on what you're feeling, but chances are it's just a normal part of the process. Also, there are several foods and supplements that interfere with the absorption of oral thyroid hormone - make sure you do some research about this or ask your doctor or pharmacist. Otherwise, you could be taking the medication and not absorbing it all, which will make you feel worse, too. Some of the common culprits are: no dairy or calcium supplements, no iron supplements, no walnuts, and no fiber supplements two hours before or two hours after you take your medication; and no more than 10 grams of soy protein a day at any time of day, preferably less.
  21. Yes, please share! I'm also desperately seeking someone to treat me in Boston.... Erin, if time goes by and you don't find anyone, I can give you the name of my PCP. She's good because she really listens, but she's bad because she really doesn't know anything about POTS. I've done a lot of research on my own, and she has been willing to read my research, do a little herself, and help me out accordingly. She was also able to diagnose me even though when I had my TTT I didn't faint and therefore the specialist running the test said it was negative (I realize now how wrong that was, but at the time it was my PCP who realized it was wrong). She's has been helpful about treating my symptoms, but I don't feel like she's done a great job of really exploring every possible cause - we explored the major potential culprits (lyme disease, vitamin deficiency, diabetes, heart disease) but she hasn't done things like test my hormones or my adrenal function. So that's why I say I could give you her name if you don't find someone better - she's kind, and she won't make you feel like you're crazy for being sick, but her knowledge of this illness is limited. Also, she's based in Nashua, which could be far depending on where in boston you live. I hope someone out there has a good recommendation....
  22. I take "Nature Made Super B-complex," and the amounts are as follows: Thiamin 100 mg; Riboflavin 20 mg; Niacin 25 mg; B6 2 mg; Folic Acid 400 mcg; B12 15 mcg; Biotin 30 mcg; and Pantothenic Acid 5.5 mg. When I first started taking this B-complex, it turned my urine florescent yellow (I know, TMI....), which meant my body wasn't absorbing a lot of it. But after I took it religiously for a month, this stopped happening, and now I think I absorb it better because my body I take 2000 IU's of Vitamin D daily. I've tried taking less and it did nothing, and I also tried taking the mega-doses weekly or monthly, and those didn't make me feel good. You probably already do this, but whenever I try a new supplement I make sure I only try one at a time, and try to keep the rest of the variables in my life as normal as possible for a period of time, so I know if it's really helping or not.
  23. I've really found vitamins and supplements to be as helpful as my prescription medication, so I think this is a great topic. Here's what helps me: B-complex: helps A LOT with energy (so much so that I can't take it before bed or it will keep me awake!) and helps some with bradycardia Magnesium: Helps a lot with palpitations -- if I don't take it for a few days I notice a HUGE difference. Also helps with tachycardia. Vitamin D: has made a huge difference in my sleep and my blood-glucose regulation. I was having wild BG swings and crashes, and I also had horrible insomnia. With the D, I wake up at most twice in the night (instead of six or eight times) and everything about my blood sugar/insulin is now normal. However, I had an actual D deficiency, diagnosed by my doc. I have no idea if this would have been as helpful if I had normal levels of D and just added more. Zinc: Zinc seems to help me with brain fog, although its effect isn't as noticeable as the other three. Here's what I've tried that hasn't helped me: Turmeric: gave me such awful, painful stomach aches that I couldn't take it enough to notice any benefit Vitamin E: had no bad side effects, but I didn't notice any improvement, either. Omega 3 fatty acids: I may continue taking these just because they say they're good for your health in general, and I'm a vegetarian so I don't really get them through my diet, but I took them religiously for 6 months and really didn't notice anything different in terms of my POTS symptoms or my mood.
  24. Here's the website! You might want to check this out, it talks about how being on a "too low" dose of armour thyroid can actually make you feel WORSE: http://www.stopthethyroidmadness.com/hashimotos/ And this talks specifically about the thyroid-adrenal connection: http://www.stopthethyroidmadness.com/adren...8a806251d4afdb1 I've found that hashimoto's is tricky to deal with, but it IS real and it DOES need to be handled properly. If your thyroid is out of control, it could be making everything else worse, including your POTS. If don't feel like your doctor is managing it well, I advise you to find someone else to work with. Sometimes PCP's are not the best people to handle thyroid diseases, because they can be so subtle and complex.
×
×
  • Create New...