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Lukkychrm42

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About Lukkychrm42

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    Advanced Member
  • Birthday 07/16/1983

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    Lukkychrm42
  • Website URL
    http://www.caringbridge.org/visit/meganmclarin
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  • Location
    Manchester, England
  • Interests
    Reading, snowboarding, anything Italian, cooking, hiking, cycling, and music. I'm a postgrad student at the University of Manchester doing Translation Studies with a focus on literary translation of Italian and English.

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  1. Olives!!! And if we're talking about foods that don't require preparation- how about carrots and hummus and fuji apples? I agree that Luna bars are great as far as meal replacement in a crunch.
  2. But that's what happens when the adrenal glands are over-stressed... When we go into fight or flight, they release lots of hormones and such, but when it happens over and over again, you get adrenal fatigue. In the UK, if you have CFS and show low levels of DHEA, they may decide to supplement your DHEA. Complete adrenal failure would probably mean Addison's Disease, but it doesn't sound like your doctor is concerned about this. I don't think I've ever had my DHEA levels tested, but I would bet money that most of us here with POTS and regular adrenaline rushes have low DHEA levels. I take a natural adrenal supplement "prescribed" by Dr. A. BTW, we're the same age. I SERIOUSLY think that you should consider seeing a specialist rather than relying on someone who doesn't know much about dysautonomia, if at all possible. Best of luck!! PS Do a google search for DHEA and CFS, and you'll get a plethora of links to studies and such.
  3. Actually, I get the breathing thing, too, sometimes, and the torso thing is what you're talking about, I think. I have no idea what it is or what causes it... When I'm going to sleep, I sometimes justify it as if the ANS regulates breathing, and the ANS doesn't work right, then it's forgetting to breathe when you fall asleep. I dunno! It's wacko, that's for sure. And I think that's also related to why I am absolutely incapable of sleeping when I have a stuffy nose- like for some reason if I'm going to breathe through my mouth, my body won't do it unconsciously (at least not while I'm trying to fall asleep). The torso thing doesn't happen just at night though- I've never noticed any pattern to it. Although for me, it's like a tickle sensation or something and it forces my abdominal muscles to contract. I can't explain it. I guess I've never worried about it too much because it doesn't really affect anything. you know- it's just there. If it's causing you to not be able to sleep BECAUSE it makes you panicky, then that's not good, though. Mostly I get adrenaline surges while upright, but if I awaken at night and turn over onto my stomach, it'll often happen then, too. It usually just takes awhile to calm down and then it's okay. I'm not sure what you mean by pituitary problem? Right now I forget if something has shown up in a test or if it's just an endocrinologist treating your dysautonomia? Obviously there are lots of hormonal issues that go on in dysautonomia, considering the ANS regulates the endocrine system. I guess I'm unsure if it's really the physical symptoms that are causing you the distress or the fact that they're scary and you don't know what's going on? I don't mean to sound patronizing at all- i guess sometimes you get used to things that most people wouldn't consider anywhere near normal, you know?! Because like I said, when it wakes me up at night, it's beyond irritating because it's disrupting valuable sleep (!! How rude!!!) and it's hard to be patient to wait for them to be over. If I have to, I'll read while waiting for the body to calm down, because starting actually thinking can mean I'll never get back to sleep! At any rate, don't worry that you're losing it, because you're not. Other than that, I hope you start feeling better soon, and I hope the endocrinologist can give you some much needed answers!!!
  4. Hi there, I had three sets of tubes as a child due to recurring ear infections. I now have nerve damage hearing loss of 30% in both ears. I have never been told that tubes were an option to deal with the hearing loss- I had hearing aids that I wore in high school, but I didn't like them, so now I am just careful about sitting up front for lectures and feeling comfortable asking for repetition. That's interesting about the correlation with Chiari... I know that mine is due to the chronic ear infections (from age 2 weeks, common with EDS), but it'd be really cool if they can treat the Chiari and some hearing will return! I can't believe you had them put in while awake- all of mine were done in surgery in the hospital (though probably due to my age). I had the vacuuming done too many times to count while growing up. I definitely preferred te allergy shots and such! I've only had maybe 6 ear infections in the past ten years, with 2 recurring ones from swimmer's ear while I was on a diving team. I still have the hearing aids, but since it's moderate hearing loss and not severe, it definitely doesn't impact my life as severely as other health issues any more. I mean, I'll have to get my eardrums replaced someday, but I haven't had ear surgeries since age 9 (ear drum burst, then cystectomy from patch). Anyway, hearing aids aren't bad. Nowadays they're small enough that they're hardly noticeable. Good luck with either them, the new tubes, and potential Chiari treatment!!
  5. Hiya! i remember that Persephone was the one taking it- looks like she hasn't been around much, but from what she's said, she's doing great! I wasn't sure if it was due to her med combo or luck/timing/lifestyle or what, but it does look like an interesting option. Obviously not all drugs work for all POTS patients. And obviously most of us are precluded from using at least one of them for whatever reason. Of course, since medicines aren't necessarily universally available, you sometimes have to juggle a bit to see what you can come up with. For example, melatonin isn't available in the UK. I also can't get Proamatine brand, betaxolol, or Adderall. I'm about to give up the Adderall because it's wreaking havoc with my mental health- so we'll see what else is out there! I'll have to check out the links, but I wonder about its use versus BBs? Especially since many of us are on the BBs to keep the HR down. And would it have the same effect of lowering BP too? If it's not yet available in the US, sure it might be years before the pharmacies carry it, but its availability elsewhere could mean that it's got potential for use in studies, if not already, and IF there are positive effects, then lobbying the cause might get FDA approval faster. (If ok obviously. I mean the FDA doesn't exactly have a clean track record, approving harmful medications.) Better get back to studying!
  6. I've been using mine on campus for over a year now. I'm mostly used to the stares- the truth is, if it were a normal-looking cane, it probably would get only 1/4 of the looks. It's not a fold-up one, I walk with it like a normal cane- between joint pain and lack of balance when dizzy, it's all the same! At this point I'd rather have it with me and not have to use it than to need it and not have it. It's been a great help. It's only irritating when ignorant people make comments "How can you live like that?"- some horribly rude (and depressed?) sixtysomething prof i didn't know. "I need one of those"- when it comes from someone who is obviously just tired of waiting in line. Other than that, it's great! I'm thinking of doing a study, though. I pass by the student union on the way to all my classes. On short trips, like just to the library and back, I don't always bring it, and as there are always people in front of the student union handing out cards for various bar parties/drink deals, etc: they usually try to give them to me when I'm walking without it. When I'm using it, even if I do have a hand free- NEVER. Hmmm.. I don't know about fold-up ones, I've only seen travel, fold-up normal canes. Have a look on some of the websites that sell canes, though. Good luck
  7. I can't believe that after all this it's a case of your word against theirs- how ridiculous!!! SO unfair. I'm glad that Mike's doing a little bit better, and I hope that you all continue to heal from this. I also hope that eventually the truth comes out such that those responsible will be prosecuted. Take care!
  8. If your doctor is worth anything, he'll understand that some symptoms are not (easily, anyway) empirical. So he/she should be asking how you're feeling. And it's great that you're feeling a bit better, and while you might not see easily what that means from a symptom standpoint, you might be able to tell if the bad days are more often than good days, or if "normal" days are really your standard (normal for you). My doctors ask what symptoms I'm getting, which are more often, and which are the worse ones. On a bad day, you might get symptoms that you don't always get- for example, I used to be nauseated all the time and definitely upon standing, and I wasn't able to eat breakfast. Now that only happens on a bad day. Yesterday wasn't fabulous, but it was pretty darn good- I stood in line for ages without sitting, doing leg exercises, and while I got hot flashes and was mildly dizzy, I wasn't sweating profusely- it seemed to plateau, I guess. Considering I hadn't planned on that and had avoided bringing my seat cane on purpose, this was a pretty good feeling. Also, symptoms that might not be a part of your prodrome might appear and make your POTS symptoms worse- so you might get occasional migraines that aren't directly POTS-related and these probably make your day a nightmare. I think that when you become more aware of your body that you'll start to understand your patterns. That doesn't mean that you won't ever get random issues or such, but I think it just comes with time. When I was little and would arrive at school (from the walk from the car or bus) sweaty and out of breath, the first two things I did were stopping at the water fountain and going to the bathroom to wipe the sweat off with a paper towel! I didn't know that something was wrong, because I'd always been this way- I just thought I was weird. Now I know what's going on, so I know what I can do to mitigate symptoms or often when and why they might subside. Of course, this isn't ALWAYS a good thing- like if my HR is too high when I lay down at night, I know that I won't go to sleep, and then I won't. (This is often while changing beta blockers!) Last night I just took some Bach Rescue Remedy and daydreamed a bit and then I woke up at 5 for the bathroom! Anyway, best of luck with everything!
  9. Oh yeah. Back in June I was promised a large number of accommodations from the university. Some of them have happened or are in place, and the rest are *still* awaiting funding. One of the helps was to have someone run errands for me twice a week. When I asked about progress on funding a week or two ago, I reminded her that a 15-30 minute trip of errands for a "normal" person (grocery store a 3 minute walk for these "normal" people) takes me at least 90 minutes as well as an hour or more of recovering afterwards. They're still "trying to locate funding." And that's just errands- not classes, schoolwork, and so forth. Any time there's a schedule for the day, it's pretty much booked double-time, so an hour here plus an hour recovery, or when walking to school (5 minutes) allow 30. It's not as bad right now as it has been some times, but the mindset is still there, too. I hope you recover soon!
  10. I'm so sorry for everything your family has been through this weekend. I don't understand people- repaying your benevolence and hospitality in such a way... Mike is lucky to have two such wonderful parents. Please accept my love and wishes for healing, and please give Mike an extra hug from me.
  11. Some cocoa powders are processed (or something) with alkali- I don't know what substance that means they come into contact with, but it might be worth trying some natural cocoa powder (not Dutch or alkaline). Also, allergies can come on suddenly for foods that you've been eating forever, so I wouldn't discount the milk just because you've been fine with it before. I'm allergic to celery, too, and you're right. Carob isn't that bad, though. I really like those carob-covered rice cakes- yum! :)
  12. I read Italian and understand it, and then when I'm not feeling well, a sentence will come out of my mouth that sounds like a beginner's- it's so embarrassing, especially when other times I sound completely normal! At Vanderbilt one of the tests they sometimes did was making the patient do arithmetic in their head while standing. Believe me, it's probably not about LOSING knowledge- finding it might be tough when there's not enough oxygen up there, too!
  13. As I've said before, we are ALL different, and what works for one person may not help another. I'm not making blanket statements such as we should all eat salt!! I was just giving an obvious example of dietary changes that doctors have recommended to SOME patients for years, which apparently wasn't as obvious as I'd intended. I apologize if my posting what I had eaten left anyone feeling defensive or offended or seemed dogmatic- it was certainly NOT intended as such...rather, I was only trying to describe in more detail HOW I am currently approaching food and to stress that there's no feeling of deprivation in it. And I'm certainly not wanting to pressure anyone into trying something they've no interest in. I don't chastise the meateaters with whom I share a kitchen, and I expect the same respect from them. Believe me, I know all about electrolytes having spent late June in ICU in a coma after a lengthy hyponatremic seizure. I'm not planning to give up powerade or veggie broth. I am not clinically low in potassium at the moment. The fruit was recommended in combination with the licorace as the extract can deplete your potassium. I also digest a smoothie a heck of a lot better than a bunch of fruit. Not that different from baby food- have tried plenty of that but had to add tons of salt. This is not a debate over the merits of a raw or a vegetarian or vegan diet. Just as you didn't do well on a vegetarian diet, I am much better now that I don't have to digest meat. (And I'm very muscular.) If it works for you great, if not then oh well-move on to something new. Nor is it the place to attack someone's personal dietary choices because they happen to be less mainstream or because it didn't work for you personally. (This includes posting articles by ignorant, uneducated people who appoint themselves gurus of whatever.) I don't go on and on about meat being unhealthy and so forth. That's also why I don't need to post a list of success stories, because I know that we're all different! Like the rest of you, I am on a journey to see what, if anything, works best for me. For example, chopping, stirring, etc is performed at the table. I just don't think that it's appropriate to discourage anyone from trying new things, and that includes statemens like "a vegan diet has no pure protein," which I won't even bother to go into. I know I'm young. I've been dealing with autonomic issues for 24 years, and I don't claim to be an expert. If you haven't noticed, I'm always hanging around to hear about people's experiences with such and such. I'm not on disability. I certainly could be, and it's been discussed in my family and with my doctors. But I plan to translate from my bed for as long as my mind can still string together relatively coherent statements. I know I don't know everything. That's why I'm so eager to learn as much as I can! I may stumble along the way, but that's part of life! It's great to hear about your personal experiences. I appreciate your honesty- it can add some balance to the worldview, you know? But that's no reason to dismiss MY opinions AND experiences because of my age. And by the way, I think I'm feeling better in part because I'm not eating so much soy, too. And less of the cramping and...whatever. FYI there are plenty of so-called healthy foods that are NOT acidic.
  14. And by the way, there are reputable doctors who HAVE recommended dietary changes. Umm- let's see... how about salt????? My excellent cardiologist has had POTS patients who have responded well to gluten-free diets. He's also had some who haven't. Some sources list dairy as a food to avoid for dysaut. patients. Clearly we are all different. No, there is not a one-size-fits-all plan out there that will cure people!!!! Dysautonomia is real- obviously!!! But would you honestly say to someone- no, don't eat that apple. it's not worth it. My doctor orders me to eat oranges and bananas every day to make sure my potassium level stays up. I think it's unfair to make a blanket statement that food has no effect on people. It's discouraging and unnecessary. This is a journey, after all- we're not static beings stuck in a closed system. Oh I can be cynical about a lot of things. But if a friend here asks if trying something new is worth a shot, we usually tend to say either, I don't know but I want to hear how it goes! or it didn't work for me, but let me know how you do with it. Am I wrong here? I guess I choose to be positive when it comes down to it.
  15. I agree that no one is saying that to eat healthy you have to eat gourmet 3 course meals. For me the key has always been to make huge portions which will feed me all week! And it usually involves very little prep or cooking time. Just so we don't confuse healthy with difficult! I've only been cooking since I became vegan, so I learned pretty quickly that fast food just wasn't an option, so I found the shortcuts that I needed to avoid collapsing on the kitchen floor.
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