Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Lukkychrm42

  • Rank
    Advanced Member
  • Birthday 07/16/1983

Contact Methods

  • AIM
  • Website URL
  • ICQ

Profile Information

  • 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.

Recent Profile Visitors

3,277 profile views
  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 n
  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 t
  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 a
  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
  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
  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
  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,
  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
  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 m
  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.
  • Create New...