OCsunshine

Oh I forgot to add that yes, my doctor at Hopkins ordered extra fluids for me (warm saline) during the procedures. And he always has a phone conference with both my surgeons and my anesthesiologists before I go under... so that makes me feel much more at ease about things. Most of my procedures were done in a hospital, but my wisdom teeth were just done in the surgeon's office. I was nervous about that (not being near the ICU), but things went fine and they monitored my blood pressure the whole time and it wasn't a big deal. Sorry for the double email, I am just forgetful!

I have been under anesthesia 4 times. -Endoscopy -Appendix removed -Gall bladder removed -Wisdom teeth extracted (all 4 of them) For the mild anesthesia (endoscopy and the wisdom teeth) I had no troubles at all. I woke up feeling sleepy and groggy and didn't have any problems afterwards (besides the normal pain of having four teeth pulled!). For the heavier anesthesia (appendix and gall bladder removed) I came out of the anesthesia fine (they didn't say they had troubles waking me up or anything), but I think it was just a resistance to the strong pain meds. They put me on demoral when I was coming out of the appendectomy and I was very nauseous and vomitting for a day after that- but once I asked to be taken OFF the pain meds completely, they put me on Toradol instead, and I did really well with that. So I was convinced it was the pain meds that didn't like me- not the anesthesia. When I had my gall bladder out, I told them NO DEMORAL for me! I asked for Toradol only. Of course, they insisted on stronger pain meds and I wound up with Morphine in me when I came out of the anesthesia. For 2 days after the surgery I was in the ICU with a racing, irregular heart (super fast for over 48 hours) and my blood pressure was flipping up and down, and I was very ill with other problems. But I am still convinced it was not the anesthesia that bothered me- it was the strong pain meds my body didn't like. Once I convinced them to take me COMPLETELY OFF pain meds after my gall bladder surgery, I was fine. I can handle pain very well, and the 4 incisions didn't bother me a bit. My heart went back to normal and I recovered. Everyone has different experiences with anesthesia. Even 'healthy' people have weird reactions when they wake up sometimes- I have heard of people crying when they wake up, or laughing for a while, or even singing songs that make no sense... ha ha ha.... but most of the time I think people just feel groggy and disoriented. It's not a big deal- eventually you become more alert and it's like nothing ever happened. It's always a learning experience (surgeries/hospitals) because you can find out what your body can handle and what meds it will adjust to better than others. I'm sure you'll do fine, don't be anxious about it! I love having anesthesia because you just sleep through everything and it's like no time passes at all... you're instantly in the recovery room and the whole procedure is over and you never even knew it! It's great! Let us know how you're doing afterwards!

Wow, that is an uplifting story! I'm sorry she had such a rough time (I know, I've been there), but it's so wonderful and encouraging to get medical helps that is actually "helpful" and not judgemental! I just had a quick question. You said you gave out "information cards." What are these? Does it explain OI? Is it something you had made, or did you make it yourself? I'm very curious, it sounds like a good idea to hand something in writing for people to understand. I'd like to know more about it.........

I am so sorry you had such a horrible time! I am glad it happened at a doctor's office, though. At least medical professionals get a chance to "watch us in action" when that happens. So sorry you had to go through it, though. I do know that feeling very well- being able to hear and understand what's going on, but everything going black and not being able to respond. It is very scary, for sure. The first time it happened to me I was 13 years old and had been perfectly healthy all my life. Got up in history class to ask for a bathroom/hall pass (was feeling woozy, which was unusual for me) and totally blacked out in the back of the classroom. I remember trying to walk for the door (to get out in the hall for fresh air) but didn't make it- so I just crashed into a bunch of desks and passed out right by the cabinets. I was unconscious for about 1/2 hour... the teacher was freaking out trying to talk to me (I could hear him, but couldn't see him or say anything) and students were all chaotic around me. I would go in and out- sometimes being aware of what was happening and sometimes being out completely. I remember being dragged, by my armpits- my legs dragging on the floor, all the way down to the nurses office. I didn't 'come back to life' until the nurse put my feet up. All the other kids and the teacher kept trying to STAND ME UP! In the classroom they were pulling me upright and wouldn't let me lay down, so that's why I stayed unconscious for so long... oh it was miserable. No one forgets their first time.. that's for sure. Jeesh! At least you have a crowd here that understands what you're going through! Are you on florinef, by any chance? Has your K level ever been low before?

Hi Gwendolyn! My name is Rachel and I live in Maryland. Nice to meet you! I am 24 and was diagnosed with NMH and CFIDS when I was 13. I'm so glad you joined the board! I am also a newbie, just joined about a week ago. This seems like a great place for support! Sincerely, Rachel

Oh my GOSH there was a NOTE on your WINDSHIELD!!???!!??! That is unbelievable!!!!! Okay, not really- that is totally believable. But I am appauled!!! It is sickening that people don't realize you can have disabilities and still "look" okay. Don't they realize how much of a struggle it is? Don't they realize that after that trip to the store and the 10 minute walk while we shop is going to send us to bed and have a flare up for the next 2 weeks?!? I guess they don't realize these things. :-/ I don't find US to be the tragedy. I find THEM to be the tragedy. How sad for them to be so ignorant. -Rachel PS- Maybe we can start a thread on "how to change the world" and give ideas on spreading awareness. The only thing I know about is "CFIDS Awareness Day" which is May 12th, I believe (I could be wrong). We have a blue ribbon for symbolism. But I think that blue ribbon and the month of May are actually for all "Immune Diseases" wrapped up into one big thing, and that really isn't fair. And besides that, I find OI to be a completely different animal from CFIDS. So.. again... any ideas on spreading awareness of POTS and NMH and forms of OI??

This is why I do gentle pilates and yoga sessions... short sessions... it helps with my muscle tone and I try to stay "lean" the best I can. My heart just can't handle cardio workouts- I have been diagnosed with NMH (not POTS) but if I start a cardio workout or run or ANYthing like that, it's like my heart can't re-set itself afterwards. I have been to the ER many times because of that. I love pilates and yoga, though. I take it easy- I go slower than Denise Austin. But I do the 'exercises' and it feels great and doesn't start my heart racing. Just an idea...... -Rachel

I am so shocked to hear all of these negative side effects! I didn't know it could cause so many problems. I didn't mention (in my post earlier) that I had no weight gain whatsoever. Didn't feel any bloating... didn't have any problems at all! I didn't even know weight-gain WAS a possible side-effect! It has just worked so well for me... I'm sorry others have not had that same experience. I take it with a beta-blocker and it's a super combination for me. -Rachel

I am also on a very low dose of florinef. I have been on it for 11 years and it is a great success for me. It did take a while to get used to, as did all of my meds. Don't give up right away- sometimes your body needs an adjustment period. But the florinef works great for me. And yes, even though right now I take .1 mg pills (and I only take 1/2 pill in the morning, so really that's .05 mg), I take a lot of potassium to balance it out. I take 40meq/day of potassium. You have to be careful with K supplements because our bodies don't absorb it very easily. I tried the generic brand of K-Dur a while back and it sent me into the hospital needing bags of K rushed into my body (ouch). But now they have new generic forms of K-Dur (I'm on one called Klor-Con) and it works great. They are doing much better with the generic forms nowadays. I hope you have a great experience with it, too. Any med that is on the market has a list of scary and horrifying side effects. I don't read those before I take the med b/c then I get paranoid. I just figure I will get through the worst and it's worth the risk if it means possibly improving my health. But that's just how I feel. Let us know how it goes! -Rachel

I apologise that I am responding to a post that was made several weeks ago, but this just sounds SO familiar. I went through a phase (many, many months) where I would wake up severly nauseous and have violent vomitting fits. My one GI doctor told me I was bullemic and I -knew- that was not true. I was not at all concerned about weight, I was trying to NOT throw up every morning! DUH! Anyway, I had an endoscopy done and several other unpleasant tests... turns out they found an ulcer in my stomach. They loaded me up with antacids and stomach meds and all of this gross stuff that made me worse. Once I gave up on it all and stopped all the meds they kept throwing at me, I got immediately better. Go figure. So I am not sure what it was, but I have a feeling the acidic level in my stomach was messed up, PLUS the stress of doctors telling me I had an eating disorder when I knew that wasn't true. Is she feeling any better? I feel so bad for her.... -Rachel

Things that helped me go from "completely bedridden" to "mostly active" are: MEDS: -atenolol (beta blocker) -florinef -k-dur (potassium to balance the florinef) -birth control (increases blood volume and raises bp) -salt tablets LIFESTYLE: -compression hose -drinking LOTS of water, gatorade and juice (not soda) -keeping my feet up (even when sitting i always sit on my feet or prop them way up) -rest, rest, rest (it's taken me 11 years and i am still learning to NOT over-do it) -breathing exercises (when i feel headaches and tension come on, my breathing exercises actually do help me a lot) -washing my hands and staying away from young children (i attract germs and dont recover well) one other change I have been able to add into my life is exercise. i can do low-impact exercises and pilates on days i am feeling very well. i wasn't able to add this into my life, though, until i was already "doing better." if i tried being too active or doing exercises when i was still in a "housebound" time, it would make me 'crash' all over again. Hope this has been helpful- I'm not recommending anything I have listed, I am just telling you what has worked for ME since you asked.

Thanks for such a warm welcome! How nice! Now I feel right at home here, and I am learning a lot just by reading the various posts on all of the topics. I am certainly enjoying it and keeping up the best I can. Emily was asking about Dr Rowe. Have you heard of him? He is famous all over the world and is just a super doctor. I have had a wonderful experience with him- I was one of his very first NMH patients! He has found a very successful treatment plan that consists of medicine (atenolol, florinef, k-dur), every-day tricks (wearing constriction hose, drinking tons of water, salt tabs and gatorade, keeping my feet tucked up when I sit down, doing gentle stretches and exercises, etc...), and finding other doctors who are local and can help me out. For example, I saw an "Osteopath of Neurology" for a few years who was awesome, and worked out the narrowing of my spine (cervical stenosis), which alleviated several symptoms. Dr Rowe has always been very open-minded and responsive (I can email him with a problem or question and he will respond with the day, or if I have an emergency I can page him and he responds within 5 minutes!), and he is a very caring and intellegent person. I just can't say enough about him! If you would like to read an interview with him, here is a link (it's great info on NMH and CFS). http://www.abc.net.au/rn/talks/8.30/helthr...ies/s828404.htm Thanks again for all of the warm welcomes... I am looking forward to getting to know all of you! Sincerely, Rachel emily wrote: what things has dr. rowe found to work for you? do you see him often? have you been happy with your care from him? i am glad that you have found so much improvement. i know it's not ideal, of course, but it sounds like quite a big step from where you were!

Hello everyone, My name is Rachel and I'm so happy to have found this discussion group! I have been part of a CFS list-serv for years, and am thrilled to find discussions more focused on the Orthostatic Intolerance. A little background: I am 24 years old, living in Maryland, USA. I was diagnosed 11 years ago with CFIDS and NMH (Neurally Mediated Hypotension). My doctor is Dr Peter Rowe at Johns Hopkins, he did the tilt table test and I scored positive (ie, went unconscious) within 30 seconds of being upright (lucky me). I hope it's okay if I become a part of this discussion group, even though I don't have the POTS diagnosis. Everything I am reading just sounds so similar to NMH! Pretty much the same symptoms and the same treatment plans. My level of activity has gone from being totally bedridden for months and months at a time to being active and being able to work part-time. My health fluctuates throughout the year, depending on the seasons/weather and what viruses/illnesses are going around (I catch everything, and it takes months to recover). I am always interesting in learning more about these illnesses and it's so comforting to 'meet' people that are dealing with the same obstacles. Sincerely, Rachel (aka OCsunshine)

Lisa, I'm not sure I will be of much help as I don't know much about the tecnicalities of bv testing and I know nothing about Vanderbilt. My thought was this- are you planning to enter Vanderbilt as a new patient and sign on with a new doctor there and have him start from square one? It sounds like that's what you are trying to avoid. In my experience (with doctors and places like Hopkins), I find that it's best to stick with my 'favorite' doctor (ie, the one that is the best advocate for me and is truly out there to help me and seek answers, not just brush me aside or use me as a guinea pig). When I need something outside of his expertise or ability, he will "send me" somewhere and give strict specific instructions to the new doctor or medical institution. That way I'm not just handed over and tossed about. I get into the hospital/research facility, they do as they're told (my doctor keeps a close watch and tight communication with whoever I'm going to see) and then when the procedure/test is done, I go back to my regular doctor to deal with whatever they found. Does that make any sense? Again, I don't know how Vanderbilt works so this may not be much help. I hope you can get the accurate bv test that you need and take those results back to a trustworthy doctor. Sincerely, Rachel D At this point I have had numerous tests including a tilt table test and have an accurate diagnosis, I am really not interested in a lengthy series of tests because I'm truly afraid that it would take me months to bounce back from them. Is it possible to go their and be seen for specific things such as blood volume without being admitted for numerous days?

Hello, I am new to this discussion site (this is my first post, please excuse me if I make any technical errors), and this particular post caught my eye. The situation you are in sounds so painful and sad, I'm sorry your daughter is feeling angry at you and dealing with such a hard time in her life. When dealing with this illness it is common to feel angry and bitter, and it's often hard to find a place to "vent" that anger, or rather a place to "aim" it. Her teen years are without a doubt the most difficult time to be going through this disease. My perspective is a little different from yours. My mom has OI and has had it her entire life. Even going through grade-school she was known as "Kathy the Fainter" and that was just part of who she was. She didn't get a diagnosis until later on, of course, but she knew her symptoms. Her mother (my grandmother) also had low blood pressure, although not as severe. My mom's sister also has OI and CFIDS. She has always struggled with blackouts, racing heart, dizziness, nausea, fatigue, and many other symptoms of course. My mom had me, and at 13 years old I became suddenly ill with OI and CFIDS and have an even more severe form than my mom and aunt. So, as you can see, the disease seems to be worsening through the generations. I don't blame my mom one bit for wanting a child even though her health was quite peculiar and it was probable to pass the problems onto her children. Through the years of being bedridden, back and forth to major medical institutions, put on many treatment plans, and just wading through all of the suffering... I am GLAD to be alive. I feel that this illness, although difficult for me to deal with, has given me so many opportunities I would not have otherwise had. I have met many people- other patients and tons of doctors, I have learned what it's liked to be labeled as "disabled" and therefore learned to have compassion on other people that also struggle. I have learned to trust in my Creator and take things day to day, and always have hope for tomorrow. If I would have spent my whole life healthy and not surrounded by patients & family members with OI and CFIDS, I am afraid I would be living the life of the ignorant, not knowing about all of these mysterious illnesses and not knowing so many of the people that have conquered them and suffered through them. I would probably feel uncomfortable around people with sicknesses, people in wheelchairs, people with disabilities... but instead I feel connected to them, able to identify with them and treat them like a 'human being' and not be one to just pretend they aren't there. Even though this life has been hard on me, I feel that I have gotten a lot out of it. I wouldn't change much if I could go back in a time machine. And as I go forward into the future, I want to have children and instill in them the hope that I have. Sincerely, Rachel