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OCsunshine

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Everything posted by OCsunshine

  1. For those of you that read my other posts about my friend's brother that had the TTT and was put on a beta blocker and salt tablets... I found out that he does indeed have a specific diagnosis... it's Neurally Mediated Hypotension. Same exact diagnosis I have- and he has gone to completely different doctors than I have gone to. Just amazing- more people in this small town with the same illness. Hopefully the word will get OUT and people will start to understand!!!!!!!!!!
  2. Well anyone can have high 'bad' cholesterol and low 'good' cholesterol (there are two kinds- LDL and HDL), regardless of weight. I eat a lot of "whole grains" that are good for keeping your cholesterol healthy. The trick in the grocery store is to find foods that have the certified label of "council of whole grains" or something like that. The first or second ingredient should be whole grains. If the label says "made with whole grains" that really doesn't mean much. So be careful what you buy. I'm not sure what else works with cholesterol... I know I eat a handful of nuts a day (no more, no less) and that's supposed to be good for you, too. I also hear flaxseed is good. I get all my info from Oprah and Prevention Magazine, so... you could find articles online that could help you out with a healthy diet. I just got a subscription to Prevention Magazine for Christmas and am very excited about it!
  3. Well hello there! It has been a joy reading everyone's posts on this topic! I read so many random posts and then see so many names on the side of the screen, I really get confused as to "who" is "who." :-/ I'm so ashamed! Well, I just joined this discussion board a few months ago and I feel right at home. It's wonderful to meet other people with OI. It just makes me feel at peace and makes a 'hard day' just not as hard anymore. So, my name is Rachel and I live in Maryland, USA. I'm 24, married, and have a lovely doggie named Lucy that is my true companion. I like interior design and helping disabled kids- I have a special interest in Autism. I was a healthy active girl until one day in 8th grade Social Studies class I blacked out and was unconscious until my mom came to pick me up from school (the teachers and nurse all tried to keep me "upright" and wake me up, which kept the blood from getting to my head- stupid people!). Anyway, I was never right since that one episode. I was diagnosed with Mono and spent weeks totally bedridden. Weeks turned into months and I was unable to even sit upright for any length of time. My local GP sent me to Dr Rowe at Hopkins who recognized my illness (Neurally Mediated Hypotension) right away. He is an angel. Long story VERY short- he got me on a combo of meds and physical therapy that helped me out, and I slowly improved. Since then my life has been full of ups and downs with my health- going from mostly active to mostly bedridden for months at a time. You just never know how the year will turn out! I struggle day to day with lightheadedness, dizziness, migraines, heart palpatations, joint and muscle pain, and a million other symptoms... I feel so happy to have this discussion board. I don't have a "POTS" diagnosis but I totally relate to every single thing people talk about on this board b/c NMH (aka NCS) is so darn close. It's been wonderful getting to know everyone and hearing your highs and lows with this illness. I love having friends around the world who actually "get it." ;-)
  4. I was inspired by this post to go to my local drug store and get some different stockings. I have used the JOBST stockings for a long time, they are the low basic compression. They aren't very effective for me. They make my toes feel squished and they hurt me around my abdomen and they are pulled up so high I feel like a little old lady! :-P So I found out that they sell Thigh-Highs! That was pretty exciting for me. And I also found out that they sell open toe style, which might help with my squished-toe problem, but that style you had to order and they were much more expensive. I just bought a $15 pair of JOBST thigh-highs to see if I like the style. When I go back to Hopkins in 2 weeks, I'll ask him what compression I should be using, and if the thigh-highs would still be effective even though they don't go all the way up. Maybe I can get a Rx so my plan would help me pay for them! The ones I wanted were like $70!! Anyway, just thought I'd share... does anyone else use the thigh-high style of compression?
  5. I do pretty well on the pill... my Hopkins doc put me on the pill many years ago (I was about 16?) because my periods were extremely heavy and I was severely anemic during those times.. basically my periods alone would make me feel awful for 3 weeks out of every month!! So something had to be done about that. For about 8 years I have taken the pill (was on desogen most of the time) continuously for 8 or 9 weeks at a time (my doctor wanted me to go for 12 weeks, but my body refuses to wait). now i'm on the patch and it's super for me. oh- forgot to mention- my doctors main reason for putting me on BC was to raise my blood volume. he knew about the blood volume problem in NMH patients and did everything to try to boost mine. it worked and helped with my fainting problems a little bit.
  6. So you don't have to actually faint for a Dx? Well I guess that makes sense... they have you hooked up to monitors, right, and they watch your b/p and your heart rate? It's been over 10 years since I had mine done, I just know that I was upright for about 30 seconds before I completely blacked out. Maybe they only kept him up there for 20 minutes or so and that 'seemed' like a long time. His sister didn't really know. I need to find out more details. It just seems weird to me that he's on salt and a beta blocker, but when I asked what his diagnosis was, they didn't really say he had one. I just feel bad for the boy and want to help them out... I don't know what else to advise them, you know...?
  7. One of my friends has a younger brother that just recently started having problems. He has been passing out in school- very suddenly blacking out. He has been to many doctors and they found out it's not a heart problem like they had suspected, but his treatment now is- taking salt tablets, increased salt diet, and a beta blocker, and they are working successfully... he hasn't blacked out since he went on the salt and BB. The funny thing is- when they put him on the Tilt Table (before the meds), his reaction was okay. He didnt black out or anything. I am just confused, because I thought salt and BB's (like I am on) are used to treat OI. But does he have OI if he was okay on the Tilt Table? I don't get it... I wish I had more information on his diagnosis (he is in 11th grade, by the way, he was healthy and an active cross country runner, but now he's not well at all). I am trying to give his sister (my friend) support and info on OI, but then... I don't know if it really is a type of OI because of the TTT? Am I making any sense?? Any thoughts would be greatly appreciated ... thanks.
  8. What is "Bubble" about? You mean your son was in a movie? Or he made a movie? I'm confused... sorry! Just curious.
  9. My neurologist puts his patients on beta blockers because they 'regulate' your blood pressure (at least for most people). People have a misunderstanding of BB's, they think that BB's LOWER blood pressure, when really they are just 'regulating' it. It's just that most of the time patients have high BP, so BB's will wind up lowering it. In my case, the BB works in the opposite way and it raises my blood pressure. Regulates it. Hope this makes sense....
  10. well my eyes are always dilated. a neurologist recently told me that it's the same part of the brain that controls the blood pressure that also controls the dilation of the eyes. something like that.... (he told me more, and it made sense at the time... but i can't think of it all now). my eyes are always dilated HUGE and it's very uncomfortable b/c a light that's 50 watts feels like it's 150 watts to me. the sun is extra cruel, and therefore i get headaches and a flare up in symptoms b/c of the sensitivity. when my opthamologist puts the drops in my eyes that supposedly dilate your pupils, mine don't do anything- they are already so big! now i don't even need those drops for the tests because my pupils are so darn huge. can you tell how annoyed i am by this symptom?!? :-P
  11. i have been on florinef for over 10 years and it didnt cause weight gain for me at all. i have now been changed to "fludrocortisone" which is actually the generic form (there didnt used to be a generic form until recently). i haven't had problems with that, either. i'm sure it could be different for everyone, though.
  12. well i know that when i am completely nauseous and hanging over a bucket, i am thinking "if only i could get rid of this nausea, that's ALL i want, even a migraine would be better than this!" and then when i have a migraine and am packing my head in ice and tears are running down my cheeks because of the intense pain, I'm thinking "just let the migraine be gone, ANYthing is better than a migraine!" so... whatever i have at the time seems the WORST possible symptom. okay, but to answer your question fairly, i would say the blood pressure drops when i'm standing. i have only about 20-30 seconds of standing-still-time before things go black and i have to lay down before i crash down to the floor. so... i would get rid of that b/p dip --> syncope. it affects my daily life the most.
  13. I was wondering if anyone has personal experience with getting pregnant/having children and being on florinef and/or a beta blocker? I am on florinef and atenolol- two of my "main meds" that have worked for me for over a decade. I have tried to wean myself off of them in the past and it's been unsuccessful (experienced heart palps and very low b/p... blacked out more often). We are considering having children sometime in the future... don't know when exactly.. but I want to be prepared. I am going to Hopkins next month to talk to my doctor about the meds and the safety of them. Please let me know if you have any info on these meds and how they affect pregnancy and how safe they are for the baby and breastfeeding and everything like that. Thanks for your help!
  14. This is a topic that I don't really have any answers for... but I totally understand what you're going through. I feel like this illness has made me much more sensitive to other disabled people (special needs kids, people in wheelchairs, people disabled in many various ways...). I feel blessed to be one of "the ones" that -gets- what it's like to have a chronic illness/disability. Now other people... people that are healthy and very ignorant to illnesses, sometimes I just can't stand to be around people like that. They seem SO self-centered and just... ignorant! When I go to church I have a rough time, too- I can't stand and participate in things. I just sit during the songs and feel like I'm sitting down in this little hole with all of the healthy people towering over me. It's depressing. :-/ But at the same time, just the act of me sitting down is an obvious way to SHOW people I am ill. It's like making a statement "HEY i am NOT fine!!" The people that bother me most are the ones I've been around for my whole life, but STILL don't get it! It's so aggrivating!! People in my church (which I have attended for over 20 years) still come up to me and say "did they figure out why you're tired so much?" TIRED?!?! That is not my problem!! And YES because I was diagnosed TEN YEARS AGO! Get with the program, people! When I have those confrontations, I come home miserably sick (worn out from the activity) and I also hate the whole world. :-/ It's so sad to not be understood! The only thing I can do is depend on my husband to speak up for me, and spend time around my close family that has SEEN my illness and understands the best they can. I am taking a step towards part of this problem, though.... this coming weekend I'm going to tell the kids in our Youth Group about my illness. I'm going to give them printed out information (easy to understand) about NMH and OI and CFIDS and tell them my story about how I became ill and how I live each day... I don't want them to grow up to be ignorant like the rest of the world.
  15. Yep that's JUST what I feel- like my eyes need to 'catch up'!! If I have that problem for a while and have to be moving my head a lot (like watching a soccer game, or walking down a walmart aisle, turning my head side to side looking down aisles for a specific item) I will get an extreme headache from it. I always attributed it to the light... my pupils are so large, and light is sooo painful. But it's really the actually movement that hurts in that specific way. I never knew other people had that painful sensation!
  16. I am on florinef and the patch (Ortho Evra). You should ALWAYS check with your doctors and pharmacists about mixing meds, no matter what they are. I also wanted to high light what someone else already said- about the yasmin causing potassium problems. I wouldn't be able to have MORE of a K deficiency, florinef already depletes me of K as it is. I can't take a higher dose of K because I'm already taking the max my body can absorb.
  17. I totally can't handle flourescent lights, either. I have unusually large pupils (I know, it's weird... I get comments on them from strangers all the time!! "You have really large pupils!" So weird....) Anyway, bright lights in general hurt my eyes, and I wear my sunglasses ALL the time. Flourescent lights are like double-whammies. Walmart is awful, but it's not just them. Quite a few large stores (around me, at least) have the flourescent light thing going on. They are bright and very energy efficient, that's why stores use them so often. I had a doctor appointment yesterday and I noticed when I went into the exam room the lights were AWFUL. They were the brightest flourescent lights I have EVER seen. It was freakin' ridiculous! I just hung in there, and squinted awfully, and tried to get the heck out of there... if it was my neurologist or BP, I would have said something, but it was my GI doctor, so I figured mentioning it was kind of useless. I noticed there was only one light-switch, too, so it was either looking into a toxic sun or having the doctors be completely in the dark. (Sometimes rooms have two lightswitches, and each switch controls a different side of the room so you can at least make the lights 'dimmer'.) So I feel your pain. They are awful. I had a headache for ever after I left that stupid exam room. :-/ Schools also use flourescent lights. I rememeber being in agony all through high school because those lights hurt my eyes and head soooo bad!! Even this house we just moved into, has 2 flourescent lights in the kitchen!!! Fortunately we are doing renovations and those flourescent lights are OUTTA here soon. I dont ever turn them on now, even though they are still installed. I just put a soft lamp on the kitchen counter and that's what I use. My husband loves flourescent lights because they are cheap/energy efficient. :-/ Jeesh. I have explained to him a thousand times how they HURT me and DONT USE THEM! They must find another form of electric light that's softer and also energy efficient....
  18. d4g7, i loved your story about your little chihauhua. she sounds soooo sweet! give her lots of hugs and kisses! :-)
  19. I was hit with NMH at the same time I was suddenly hit with CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), an auto-immune disorder. My symptoms were extreme fatigue (sleeping 20 hours a day and fighting terrible exhaustion), frequent migraines, nausea, problems concentrating, joint pain and bone pain, and about a dozen other symptoms.... At the same time, I was diagnosed with NMH because my blood pressure would drop so suddenly when I was upright. My hands and feet instantly turned purple b/c of the blood sinking down into my extremeties. I know that my OI and CFIDS certainly work together- too bad they work AGAINST me!!
  20. I think a dog is a major asset to a homebound person. I have a toy poodle, she is very very smart! She is very energetic and fun to play with, but I am feeling bad (migraine, nausea, very low b/p), she cuddles up and looks so concerned, she just stays pushed against me and loves on me, which makes me feel so comforted. I have a friend that trains service dogs. I know she finds out about a particular client first (if they're blind, in a wheelchair, what they need a dog to do) and she spends every day with a dog, for a long period of time, training the dog specifically for those tasks. And she teaches the dogs commands that the client would be able to do (ie, a paralyzed person or stroke victim might not be able to use both hands for a command signal, they may have limited movements, so my friend has to be aware of that and train the dog accordingly). It's really an amazing job, and those service dogs do wonderfully things for people in need! I'm sure a service dog would be a help for a person with OI. I can think of many times I have wished my dog would be able to follow a command like "bring me my water bottle" or "bring me the phone" or stuff like that when I am totally unable to get upright and move. On the other hand, dogs do require care. They need to be bathed and taken to the vet, they need to be given medicines sometimes, and they need go outside to do their business! They also need to run and play and stay healthy. It helps that my husband is around to do these things when I am unable, but it's something to majorly consider when you get a dog. I personally find the inconvenience (letting my dog out to go potty when I am unable to stand up, I just sit by the door on the floor and let her out on a long lead) a small problem since the love and affection are so wonderful and priceless and unconditional.
  21. I am very glad that this topic has come up. I don't expect anyone to "answer" the question, but it's good just discussing it and hearing other peoples' experiences. My husband and I have been married for only 2 years (we're 25) and we've been content not having children. I have very recently been wanting to think about having children, though. I feel it in my heart. I am unable to work or go to school, and I realize I have the opportunity to be a loving, stay-at-home mom. BUT I am sick very often with the NMH and CFIDS symptoms, and I can't imagine having to be up all night, every night, with a baby. I regularly get 11-12 hours of sleep, and most of the time can barely function with that! My husband thinks I couldn't handle it, that it's not just possible for me to care for a child. This makes me so sad, I am basically just trying to 'prove' to him I probably can (with help from family/friends/church) and am waiting for him to change his mind....
  22. I have been on florinef for over a decade and it works very well for me. It's absolutely imperative that you take potassium supplements along with florinef, though. Now I am only on .05 mg every day, and I still have to take 40 MEQ of potassium (Klor-con) every day and eat lots of bananas, potatoes, tomatoes, etc... to keep my K from dropping too low (although over the years I have learned to feel it, my heart can actually feel when I am low on K and I go into the ER for a drip). Haven't had any bad side effects, though... florinef is good for me. I take it along with a beta blocker, atenolol.
  23. I had a terrible flu over Christmas, too. I came down with a sore throat and an ear infection on the 23rd, and then on Christmas Eve was wretchedly sick, vomitting, nausea... ick! I spent the day with my husband's family and laid on the couch with my head hanging over a bucket the entire time. When the feeling would pass for a minute, they'd hand me a gift to unwrap. Christmas day was spent with my family, I spent another day on the couch unable to move or eat anything. I missed 2 delicious (so I heard) Christmas dinners. Lost 10 pounds in 2 days. Am still recovering from the weight loss, dehydration, and drop in blood pressure. Merry Christmas, huh? Oh well. :-/ Maybe next year!
  24. I thought blood pooling in the extremities was just a symptom of this OI problem, ie NMH. My doc told me that mine was especially bad (feet turning deep purple) because on top of NMH I have Ehlers Danlos Syndrome. Makes sense to me.... I thought all of us had this problem..... that it's part of the blood pressure dropping and the blackouts, because our blood all falls to our hands and feet.
  25. Brittany, It seems like you're saying Seasonale and Yasmin are "safe" birth controls and that isn't true. Be careful about that.... all Birth Control have warnings about possible side effects. Some BC pills have lower doses of hormones than other pills, but that doesn't make them "safe." Also, if your GYN recommends it, sometimes it's okay to use other birth control Rx's for 3 months at a time to have your period less often, so Seasonale isn't the only option for that method.
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