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Reef Diver

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    Scuba Diving, Fresh and Salt Aquariums, Belly Dancing

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  1. Thanks for the idea. There's no way I'd be able to make it to the campus clinic when one of these starts, or even call. I'm home for summer right now. I've done some home blood sugar tests before the POTS diagnosis but it's definitely worth checking out any possibilities again. It seems its only been related to food insofar as if the meal was heavy or not.... Which I'm guessing is POTSy fatigue due to digestion combined with the other activity of the day (such as company) which can bring one on. Things keep changing though as you as know with dysautonomia, it's worth a shot!
  2. Hey everyone... haven't stalked this board in ages. I was diagnosed last summer after running across this board. Went to school in the fall and things became terribly worse. Everything was painful. Touching my hands felt like burning. Any type of shoe would lead to bruises. My scalp was so dry it was always cracked and flaking. My eyes bagged. I barely had the energy to take a bath (forget a shower). The two-space different between handicap parking spots was enormous. I was room bound. I dropped to 7 credits in college (normal class is 3 credits, so 12 credits is minimum full time load) one of which was online and one of which I never attended except for exam days. My POTSy staring episodes that had some minor twitches grew. I was having daily full episodes even though I was entirely room bound. I tried to study inbetween all the pain and seizure-like episodes. The episodes started with the feeling of slowing down, followed by staring and blurring vision, then unresponsive staring, then twitching hands/sometimes jerking eyes, and sometimes finally full blown (laying down at this point) clawed hands jerking over my chest with straight legs. These episodes would last upwards of 20-30 minutes and I would be extremely lethargic afterward. Saw more doctors, no help there. Had a long one after a spinal tap while waiting to be picked up and the doctors freaked out at one of my normal 'episodes' and rushed me to the ER. The ambulance techs thought my movements and overall episode was very unusual and dangerous. Too bad the ER doc didn't see it, gave me the 'nuts' vibe and sent me home. One of the ambulance people and spinal tap nurses followed up with me outraged I was told everything was normal. No help though. Caught a case of the flu and strep throat at once and was put on antibiotics and antiviral. For having the flu and strep throat I felt Great. Really, I woke up the next day and told my mom (who flew out to help me) "Something's different. Something's changed." Well, it did. No seizures from that day on. My bruises began to heal. I was able to wear sneakers. The burning sensation lightened. I went from having to Always take a bath too maybe taking one bath total since November. Something was different. I was starting to get better. Too bad I had Mayo appointments in the next couple weeks. Without episodes for them right then and there they were no help. No idea why the seizure-like episodes had originally started, no idea why they stopped, no idea if they would come back or what I could do to stop them. My boyfriend took good care of me and I was able to drag myself through the rest of the semester. It felt like death but college is so important to me. I rested over Christmas break and come Spring I went back to college. I didn't want to give up. Compared to how fatigued I was before I felt like I went from being completely and totally disabled to having a life back. Okay, sure, I wasn't normal. But every day wasn't filled with overwhelming pain. I signed up for 13 credits. It gave me class every day a week. I was so fatigued and tired. All I could do was go to class and dance a little in my room. The fatigue was so great my parents lended me a car to drive to class otherwise I would never have been able to finish. Every ounce of energy was for class and schoolwork and some dance. I still had episodes but no clawed hands and seizure-like things. I don't know how I was able to make it. I was burnt out after the previous Spring of illness, Summer of fatigue and doctors, Fall of seizures, and now this? Thank god it's summer right now! I came back to this board for advice on how to handle my current episodes. When do things get dangerous? When should the people around me call for help? Sometimes emergency responders seem to do more bad than good. Not to mention the sheer amount of cash that goes into one of these trips. My episodes now consist of me slowing down. I become dazed, my eyes glaze over, my vision blurs, and I become very tired. I stare off into space, sometimes shifting my eyes from person to person really slowly if they are talking to me. Sometimes as these come on my head will turn in a repetitive motion to the left (in the episodes back this last fall my head would like to turn to the left to stare- it likes the left) I go almost completely non-responsive. Sometimes I realize people are asking me something like 'Are you okay? Is this normal?' but I never respond. I can hear talk but often don't know what is being said. Or I won't even know they are talking. My memory and awareness of what is going on is foggy. I'm told I look like a glazed over doll staring past everyone. I don't move, except sometimes my eyes do a half-circle to the left I'm told (I just see blurry vision.) I had some old friends witness it for the first time on Friday and apparently it is very unnerving and stressful to watch happen. Thankfully my sister was home or they said they would have called 911. I'm still feeling the ill effects of Friday's episode. Edit: Oh, flushing too. Had flushing on the face and chest (my driver's license is a hoot!) since the start. This time this last Friday even my thighs flushed out to a nice hot red color. That was new. I've discovered wine is the answer. They have to get wine, shove the straw into my mouth, and tell me over and over to drink it. Otherwise I won't move a muscle on my own. Within a couple of minutes of the wine my vision will return, I'll start focusing my eyes on people, and I'll start talking again. Without the wine these episodes can last upwards of an hour and a half or more from start to finish. Once an episode begins I won't ask for help. Right now I'm on beta blockers morning and night, Adderall XR in the morning for ADD, birth control to not have a period, and a glass of wine at night around 7pm. I once read one of you all drank wine as a preventative. When I was having episodes previously sometimes I would take codeine or something similar to prevent them. Wine is fabulous! The speed at which it returns my cognition during one of these episodes is amazing. But at what point are these episodes dangerous in themselves? Any idea what they are? They are very much like my pre-seizure episodes so I'm worried my progress is about to hit a relapse which I'm not sure I could handle again Thanks everyone.
  3. I took Tamiflu last month. No issues! In fact, I felt better after I had started Tamiflu than I had in a long time (coincidence, I'm sure.) I'm still above my baseline - baseline being from the time before the flu/strep throat. I'm sliding back toward my baseline as time passes. This cycling reprieve would have been great except my first round of Mayo was at the end of October!
  4. I have swine flu and am taking Tamiflu to combat it. I think it's going to help me throw this bug off before I develop a secondary infection. At least, I hope so!
  5. I have swine flu right now. No fun at all! I suspect my boyfriend had a mild case and passed it over to me (don't know for sure- he never went in the clinic.) However since, like many of you!, we get things way way way worse.... augh. I would have rather had the shot!!
  6. Swine flu can, and often does, include diarrhea and vomiting. I'm down with a terrible case of the flu right now. Ugh
  7. I am able to use Nartcotics/ Sleep Aids/ Pain killers without issue. Every time I fall severely ill with bronchitis the doctors give me hydrocodone. On occasion I use it during particular major episodes to dull the pain. I also take Ambien CR nightly. Without it I would only get a few interrupted hours of sleep, if any at all.
  8. Green, At least that is how I understood the rationale. I could be mistaken! Instead of pushing myself with intense exercise and then likely need days to weeks of recovery he saw the benefit of slow, almost daily, progressive exercise. Kind of like the tale of the turtle and the hare? If I overdo it I feel worse the next few days and am unable to exercise. Therefore it hinders my overall progress. Whereas when I did small, controlled amounts most days of the week I began feeling better. No more overdo, crash n burn, rest n recover, and then repeat! Keeping my HR steady, I believe, served a couple purposes. First, it made me control my HR while exercising to minimalize swings. No jumping up and down and all over the place it loves to do so much... and is so tiring. Second, it made me monitor and learn the movements/ activity levels in correlation to their HR levels. Now I realize how much kicking on a pool noodle I can do to stay within HR range limits and when to back off even when I'm just paddling around with family and don't have my wristwatch on. Same could apply for walking in the mall. If you know the ranges and the times you are to be in them, know the amount/speed/ type of walking that would get you there you also know when you should sit down before you draw on the nasty effects of overexertion. My brain is foggy today. I hope that makes sense.
  9. I used to get these a lot when I was younger. I would look at the clock and think its not possible to be that time of day or realize whatever was happening in the dream isn't right and can only be a dream. They can certainly be annoying though. And being a kid nobody really believed me that I was having them! Now I seem to just get many, many nightmares. Nightmares were rare for me when I was little. No idea why I'm so prone to them now. I want those lucid happy dreams I used to have back!
  10. I have to add that when I'm taking care of myself (dishes, laundry, food runs- daily maintenance, ect) away at college I rarely have the energy to even think of exercising. It's only when I live at home and can concentrate on taking care of myself that I'm able to push it and be successful.
  11. When I was first diagnosed with POTs (my current complications ruin it!) I was given an exercise program designed off of my some of my test results. The goal was concentrated on keeping my heart rate within the range they gave (which was purposefully quite low) and keeping it steady. The cardio included a 5-8 minute warmup, then 10-15-20 mins (depending on how far in the program I was) of exercise, then a cool down of another 5-8 minutes. It really was to keep me from overdoing it. Light. The focus was strengthening the legs, exercise consistently, and not overdo it. So pool exercising (kicking while holding onto a noodle) was the Best(!). No gravity to fight! Light weight training (all siting down) felt really good, too. Some days, if I felt good or crazy enough, I'll do belly dancing. I've only just started but I already love doing it, it's so much fun! I'll wear a heart rate monitor and take many breaks. It's the only form of exercise that calls me to it! Or if I'm too ill to dance or use the video I may just practice a move (such as a belly roll) while sitting, laying, or walking around.
  12. I'm not sure if this falls under your qualifications or not... but I'm currently on Lybrel. It's a continuous pill form of birth control in an attempt to skip the monthly periods. I was taking Yaz before my diagnosis without breaks between packs (my Gyno would give me extra packs) but I still was having breakthrough bleeding. They wanted me off the Yaz anyway (the retaining water reason, I suppose) so I switched to Lybrel. I've been on it since the beginning of August and had no side effects or break-through bleeding. No idea if it's monophasic though. Best of luck! Chelsea
  13. One of the disability accommodations provided by my university is medically excused absences. I tried to plan classes either online or in big lecture halls with no attendance for my own sake. However I still landed up two attendance classes (a 1 credit and a 3 credit.)I have either e-mailed or met the professor (of the 3 credit class) during office hours later. I?ve already missed each attendance class once due to illness (the university health clinic gave me a note for bed rest anyway) and plan to miss again tomorrow for a lumbar puncture? it?s only the first day of the third week of classes! Last week I took advantage of the reduced course load accommodation (dinging my stubborn pride, admittedly.) It lets me remain in the dorms/ keep university scholarships/ and any other full-time student benefits while actually taking less than 12 credits. The ability to take a reduced course load is one of the things keeping me at university while I figure all these mystery health issues out. If I?m not required to attend the class then I don?t plan to attend, ever. Going out that much puts me downhill fast (illness, episodes, just living.) From experience I find it more important to keep up with the work and readings on my own. Until I get these health issues under control I?m attempting to avoid any classes where I need to attend to learn (language/lab.) Unfortunately I have a lab milestone coming up next semester. Not sure how I'm going to handle that yet. Last semester, before I was diagnosed and given accommodations beyond ADHD, I tried to attend all my classes. I ended up falling seriously ill for most of the semester (like every semester before it!) I will attend sick. However I usually get hit with sickness so hard, fast, and long professors would be keeping me out of their classrooms anyway. I just want to be able to stay at university? attendance is usually the first to go for me. I even brought a pamphlet from the doctor?s office when disclosing to the disability office. Thankfully my mom and I got all of our ducks in a row with paperwork from doctors, accommodation request forms, ect. The doctor had to list accommodations I was requesting. Thankfully my doctor?s clinic had terrific advocate staff so I came in ready for a fight with them as my support. To my surprise they were very helpful and even suggested additional accommodations. I am required by the university to meet and hand professors my accommodation list during the first week of classes? so they wouldn?t be a surprise either way. The paper lists the accommodations, not the disability (which is supposed to remain confidential at my discretion.) It?s up to me to still learn the material, do the work, and participate where and when I can. I don?t feel accommodations like medically excused attendance policies are unreasonable. Professors with attendance usually state the first week of class they don?t intend their attendance policies to be punishment. They want active learners and class participation. But if your health is to the point when you can?t attend you Really can?t attend they understand that, too. Your job as a student is not centered on attendance. The important thing is you are able to learn what it is they have to teach! Learning that is physical lab/oral/ect based would be a problem. If anyone is interested I can PM the accommodations the university provided for a reference. I go to a large public instate undergrad university if it makes any difference. I sure was nervous about returning to school before my accommodations were approved. I wouldn?t be making it without them. To stay alive and afloat at university is a whole ?nother issue. Kind of feels like I?m going into battle against my body. I keep a highly detailed agenda of everything from school related work to planning laundry and grocery shopping. First I write down all test and projects dates. Then I work backwards from the first exam or two of every class counting up and writing down which pages I need to read each day, notecard writing and from which pages/chapters, drafting assignments/completing assignments, and so on. I also make sure my schedule puts me in front of the professors and the work each day is light enough where if I?m too sick to lift a finger I can easily shift all the work to the next day without worry. Oops, looks like I rambled much more than I intended. Sorry! I've yet to find key to not getting sick. Sure hope you find something that works for you! Just try to hang in there!
  14. I believe I was born a week or two late.
  15. Hey, I have POTS. My mom and boyfriend have used that exact phrase for me too during episodes. Sometimes my chest flushes while my ears, hands, and feet are cold as ice! So cold my ears can feel like they are burning. However full blown episodes are more rare. I'll get that sickly gray/pale look when I'm having bad days. I notice my chest flush when I overexert.
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