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Everything posted by lmbutare

  1. I feel the same way about blueberries. I try to have them everyday, usually in protein shakes. Can you get them frozen? I think my vitamin supplements have been some of the most helpful things I have taken as well (B complex, fish oil, coq10, magnesium, etc). Glad that you found something that helped and hope you can get some more blueberries!
  2. I do a lot of the same things that people have mentioned so far...laptop, TV, books, audio books, knitting, crochet... but I have a few others to add! If you're really super brain drained, sometimes it's nice to just have a coloring book so you have something to keep you occupied but don't have to think or do much work. Also, I like to do crossword puzzles sometimes as well as sudoku. I really like to paint but can't do it too often due to illness (I used to paint with oils, then switched to acrylics for toxicity reasons, but now have learned watercolors b/c I can do them laying down). If you are less artistically inclined, paint by numbers would be fun as well and could be done on a clipboard or lap tray. One thing to mention about knitting and crochet: if you are prone to tendonitis from hypermobility or EDS, BE CAREFUL about how much time you spend knitting. I had severe tenosynovitis in both wrists and thumbs (actually still have problems from it) that kept me from being able to even pick up a glass! I had to wear casts on both wrists for a few months, then braces, and they are finally doing better a year later. So needless to say, I don't do much knitting anymore! I just wanted to put my 2 cents in on this one just to make sure no one else has this problem... I'm always teaching myself how to do new things (I didn't know how to knit, crochet, or paint with watercolors before I got sick) from the internet (my lifesaver). If your brain can handle it for a little while (I have to really pace myself), you can teach yourself how to do almost anything from the internet. I always thought it would be interesting to learn how to play the guitar as well... And, unfortunately, I spend a TON of time trying to read scientific articles related to autonomic disorders, etc. Magazines are nice too. Oh and I spend a lot of time hugging my dogs for moral support.
  3. I definitely agree with what everyone has said up until this point. I haven't had anyone specifically say "you don't look sick", but they often say "you look good" or "you look great" and I think it is because they want to be able to say something positive to me. It's amazing how the exact same phrases can mean different things depending on how they are said. I am also extremely pale, and I know that I have had someone say that I look good, but then comment to my Mom that they are concerned with how pale I am. My friends and family tend to not want to say anything negative to me I think and want to say only positive things b/c they think that helps for some reason. I try to always take it like they mean it in a good way. I actually have a blog that a bunch of my family reads and I specifically addressed how hard it can be to hear certain comments and what they shouldn't say to a person that has a chronic illness. hopefully that will help us to a degree!
  4. I have superbad night sweats every once in a while. They are worst around my period, but can occur other times too. It's hard b/c I sweat like crazy but then I get cold from the sweat so I get the chills and it cycles all night. Very unpleasant! I sometimes use quick drying exercise shirts to sleep in to reduce the wetness. It's so weird to have this b/c I was always the person who only sweated minimally so it's very strange to have night sweats. Same thing with if I have hot or cold beverages/foods...hot makes me overheat and sweat, cold makes me freezing. Man it stinks to not have any thermoregulation abilities!!
  5. I know that quite a few of us struggle with GERD, and I for one definitely think it is related to all of our other GI disturbances. I'm on protonix too and can't live without it. I avoid spicy foods, acidic foods, citrus, alcohol, etc and that helps some. One of the best helps that I have found is actually yogurt. If you have a bad bout of heartburn, sometimes eating yogurt (I have plain and add fruit) can really help decrease the burn. The hardest thing for me is maintaining a balance between a high sodium diet and stomach pain associated with the salt. I try to ride the line so that I reduce both problems at once, but it's pretty difficult. Also, probiotic supplements help somewhat too if taken consistently. I also use a ramp to sleep on which is pretty important too. Also, if your doctor is not receptive and treats you like a hypochondriac, you might want to consider trying to find a new doctor. The last thing you need when you are as sick as we are is to deal with a doctor that treats you like you're faking. Just my 2 cents! hope this helps and you find some relief soon. Lauren
  6. It took me about 2 years, 30 doctors, and a trip from NC to Mayo in MN twice for diagnosis (can't even remember how long the plane flights were). Way too long and too much money before I got any help at all. Believe it or not, I was put on a LOW SALT diet with a diuretic for 3 months b/c they thought I had Meniere's. So basically all the docs I saw before Mayo just kept making me worse. Not a fun process, as we all know.
  7. I am a super UNC fan (alumnus) and I have to limit my watching of Carolina basketball games b/c I was getting so jittery and anxious about them. It's ridiculous. I used to LOVE watching the games but now I have to make myself read a magazine or something during the game so I can't get as absorbed and "adrenalinized". Just one more obnoxious side effect of POTS...
  8. I recently discovered that the NIH Office of Rare Diseases has started a program for people with undiagnosed illnesses! It is called the "Undiagnosed Diseases Program" and is available for application to come to the NIH for evaluation and hopefully diagnosis, potentially free of charge. I wish that this had been available during the 2 years that I was disabled and without a diagnosis, but thank goodness for the Mayo clinic. Anyway, I know a lot of us went undiagnosed for quite some time, so I thought it was really refreshing to find that they had started this program. I have copied quotations from the website and the link is attached, so make sure you share this with anyone you know who has a mystery diagnosis! NORD Undiagnosed Diseases Program "Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals: To provide answers to patients with mysterious conditions that have long eluded diagnosis To advance medical knowledge about rare and common diseases The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases (ORD) and the NIH Clinical Center. Many medical specialties from other NIH research centers and institutes will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research. Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program?s medical team. For more information please call (866) 444-8806 Please do not send Undiagnosed Diseases Program-related email or submit medical records to the NIH Office of Rare Diseases. All communication should be handled through the Undiagnosed Diseases Program staff at the NIH Clinical Center."
  9. Hi Everyone, I know a lot of us have gone or are planning to go to the Mayo Clinic for treatment or diagnosis. I recently came across an article that described a new service that they offer called "Care Pages" that is a free web service for patients while they are at Mayo so they can keep their friends/family updated on their condition. I thought this was a really great idea and might have been nice to use while I was there, so maybe some of you can use it if you plan to go. you can find out more about it at Care Pages I hope that some of you find this useful! Lauren
  10. I'm low too and I take a D3 prescribed by my doc from Freeda Vitamins (no gluten, lactose, artificial anything, sugar, starch, gelatin, or yeast!) and I haven't had any problems at all with it...it's a 1000IU tab but they have others too. You might want to try them and see how it works for you. It really wasn't that expensive and came fairly quickly. I can't remember the website but I'm sure if you search for them you'll be able to find them pretty quickly.
  11. Have you thought about doing a "webinar" of sorts when you have a speaker so that those of us who don't live nearby or are too ill to travel could still participate? I have seen a couple of these and it's pretty neat...one of them was not interactive so it was just like a skype type thing and was great (veterinary medical training ce); the other was with the telephone and internet at the same time and was kind of a pain (that one was with CFIDS). If you are interested in this, maybe I can do some research to see what's available. I really don't know anything about it but it was really helpful for me being homebound. Great idea on the group and good luck to you! Lauren
  12. Congratulations!!! At least now you can finally have this off of your mind and just focus on keeping yourself as well as possible. My social security only pays enough to cover my medication costs, but it definitely helps! Congrats again. You deserve it! LBS
  13. I'm way late chiming in too but just wanted to say I feel for you and I'm sorry about your mouth! I have the same problem with toothpastes...my gums slough and I get cankers everywhere. Sounds like you've already found a few toothpastes that might work for you, but I've found that organic nontoxic toothpastes like Tom's and JASON and you can get a lot of them at regular grocery stores. Tom's has been good to my gums, so I like it so far. Good luck feeling better soon!!! Lauren
  14. I'm allergic to lots of drugs, even some supplements. I always have been sensitive to them, but it definitely has gotten a lot worse since I got POTS. I agree that it's probably ANS related.
  15. My symptoms got really severe after I was septic after a cat bite and had to be hospitalized on IV antibiotics for a few days. I have always had some issues with dizziness and heat intolerance, but nowhere near what it developed into. None of my doctors really knew enough about POTS to test me for possible causes and I was at the Mayo Clinic for 2 weeks with testing before I got a diagnosis and was ready to get out of there! I've always suspected that there is an autoimmune component for me b/c I have severe allergies, Graves disease (autoimmune thyroid disorder), and all this worsened after the severe infectious insult. It would be interesting to see some research done on that but at this point any research is good research!
  16. I've been working my way up on coreg (carvedilol) for a few months now too. I was on atenolol first which worked GREAT for my heartrate but made my feet turn blue and numb so I was close to losing a few of them (yikes) so they put me on coreg. It definitely doesn't work as well on my HR, but at least I get to keep all my toes!
  17. It definitely helped my cognition and brain fog. I'm able to spend more time on the computer than before. The ingredients are just NADH (enada patented), a very small amount of vitamin C, and baking soda for my brand.
  18. I tried going off florinef for a month and I couldn't even stand up at all (as opposed to standing for a minute ) and had to lay down constantly so I am definitely required to take my meds to be able to function at all. Maybe your doc should adjust some of your dosages if they don't seem to be working as well for you. Sometimes that will help significantly...
  19. I find that rinsing my sinuses with a saline solution works best for me too...not a saline spray though b/c it just clogs you up in my experience. Neti pots are supposed to be great and I use HydroPulse nasal irrigation system. I bought mine from National Allergy Supply. I definitely used to have a ton of sinus infections and this has really reduced those significantly. I'm currently on Allegra and Singulair but no nasal sprays. Hope this helps.
  20. that is the coolest thing ever! what a great idea. i never thought of that but i'm definitely going to have to look into it myself!
  21. Yup..sorry I wasn't online for a couple of days so I just got it today. You should get my reply shortly! Let me know if it doesn't come thru. Sorry for the delay!!
  22. My CFS doctor (internal medicine) recommended it for me. I had never heard of it as a supplement before, but decided it couldn't hurt to try it. There have been a few studies done on it that show a lot of promise. The easiest place to find some of them is at http://www.enadh.com/case_show.html which has links to a bunch of the studies. The CFS one from 1999 is pretty interesting. There are no POTS studies (big surprise) but multiple cases involve neuro problems so it seems hopeful. Hope this is helpful! Lauren
  23. I had terrible "brain fog" at the beginning stages of POTS that sounds exactly like what you're describing. I still get really confused if I am trying to concentrate on something for too long or if I am standing for more than a minute or 2. I found a huge improvement when I went on meds prescribed by my cardiologist. I think the midodrine and florinef made the biggest difference for me, but I know some people have had bad experience with them. Are you on any medications now? Lauren
  24. I have it too. I spent thousands at this quack dentist in DC and he ended up jacking up my mouth so that my pain was the worst it had ever been. I stopped using all the mouthpieces and it was better without them. I'm a teeth clencher, but I'm scared to get another mouthpiece after my last experience! I hope it goes a lot better for you. whatever you do though, don't get surgery (most don't even mention that anymore) b/c it can destroy your jaw. Good Luck! lauren
  25. Hi everybody! It's been a while since I've posted, but I thought I should share my experiences with Enada NADH with everyone. I started taking it a few weeks ago, and within a week I noticed a major increase in my energy. It's the only thing I have changed lately and it really seems to be the difference for me. I have ups and downs, but I haven't had this much energy in years so I am optimistic that this is making the difference for me. I have POTS, CFS, and fibromyalgia (among other things...I suspect I may have problems with my mitochondria), so my energy levels may be lower than some of yours, but I had to share my good experiences with everyone in case it could help someone else. It's expensive, but I would pay anything to have more energy so it's worth it. Just make sure that you take "enada" type of NADH b/c I tried a non-enada and it doesn't work. I get mine at the Vitamin shoppe, so you don't even have to go anywhere special (though I'm sure it's cheaper online). Just for background, I have been severely disabled and am on social security disability, so I'm at the bottom of the barrel and am ecstatic to have more energy! Feel free to ask me any questions if you have any! No promises with this stuff but it has helped me so far! best, Lauren
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