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Everything posted by Kitsakatsa

  1. There is a question I have been wanting to ask for awhile. I have had POTS for about 6 years and in the last several months I have been experiencing temporary hearing loss and very fuzzy near vision. My MD sent me to the eye and ear gurus and I have been diagnosed with Endolymphatic Hydrops (hearing loss due to sodium fluctuations, but they didn't use the term Meniers though) and Tonic Eye (cannot focus between near and far, lesions on spine/cranial nerves, sluggish deep tendon reflexes) They year before a perfussion test showed decreased perfussion in my left pointer finger and it would t
  2. You are very positive. I liked reading your post. Kits
  3. Yes! I have been in the same Job since before my diagnosis because I cannot make a daily car ride for even a half hour to work at the corporate office. In fact, I moved to just 5 minutes away from work and am paying out the eyeballs for a mortgage (and former eyeballs for rent) because the only way I can work is to be close. My parents, who live 40 minutes away, have to come and get me some weekends because I will be way to sick from that drive. Vacations are very limited on car travel. I don't know whether it is the motion, sound, etc, but it is not good and it tends to make one very frus
  4. I hate to say this, but I was down 3 weeks with a combination of this flu and bronchitis. It was H O R R I B L E! For those of us on Florinef, take as many extra precautions as you can. And, I don't mean to panic you- but be PROACTIVE. The first 3 days I was worried that I would die (Utah is the second highest in death rate) and the next three days I was worried that I wouldn't die. I remember bits of lying on the floor crying to my Mom who basically moved in to help me. Don't worry, I got through it though and so can you. I am not kidding when I say to leave immediately any place where p
  5. Yes, Yes, Yes and Yes! I too struggle with exercise (feel great while I'm doing it) and the payback (oh...****...). There are many times that I just wouldn't be able to do anything outside of the parameters of my pillow if it were not for coffee. It is not just the caffeine, I've had other forms. There is something about coffee particularly that connects my brain and reverses some of the pots symptoms. The starbucks double shots cans are great because they are portable. You can combine them with ice and 8oz of milk for the cheapest iced latte ever ($1.60 vs $4 plus tip). I truly believe t
  6. Incredible! What is the deal? Is this their own living room you were in? They are PAID to be there and render care. I swear, nurses have the ability to be angels or demons. That movie "Angels and Demons" should just be about nurses! I have noticed that many doctors and nurses don't know what POTS is and they feel their intelligence has been insulted. Which it has, primarly because they are dumb. It is just too bad that the ego extends past the science too many times in their field. I had to receive urgent nutrition IVs once for malnutrition and 48 hours before that I was in an ER where th
  7. Not "I will blow POTS all to ****", It will blow POTS all to ****. I almost let "lick" go through instead of "like" Yes, lick the forearm!!!
  8. My MD says it is from the channels clamping down. My fingers turn purple. He said moist heat not on the area, but the area between it and the heart (so like the forearm for the hand) and I take high load Niacin. It is basically vitamin B something. The pharmacist will know. I would think you could get low dose in the vitamin section. I guess the Niacin pops those channels open. Be extra careful of someone putting you on Procardia. I will blow POTS all to ****. I was sicker than Bats and it was not an experience I would like to live through again!!!! It vasodilates you an in a POTS patient
  9. I went to the eye doctor yesterday for blurry vision and was told that I have Adies. The doctor did a double residency in Neuro and does my checks every year. He said that it is basically "POTS of the eyeball"! It made me laugh that I am now falling apart alphabetically. I chuckled all the way to the car, and then I wanted to cry. Anyway, he said that another name is Tonic Pupil and can be caused by Dysautonomia, but is still rare. It is in both eyes and new since last year. There are three symptoms: sweating disorder and tonic pupil, and in the short future I get to enjoy absent deep tend
  10. I live at high altitude. I definately feel better at lower. When I go to even higher altitude, I feel worse within a few hours. It would seem that more complaints come from higher altitude people if it makes POTS worse...
  11. Have you tried sleeping in a recliner? I have heard that people who have similar problems find relief in the recliner. My cousin had great success after her car crash and was told by her surgeon that the curve of the recliner is most natural to baby seats and therefore the normal curvature of the spine. I guess you would really have to shop around for the best one with the right rigidity. Also, I have read that the mattress that you have actually will cause you to wake up more frequently because the cushioning effect of closure around your body will trap heat and moisture that would otherwis
  12. I heart carbs- all of them. Carbs (and post-it-notes) make the world go around. I eat carbs whenever given the choice because of nausea- but I have found one wonderful thing for my protein deprived life. Instead of candy or candy bars, I eat chocolatey protein bars: powerbars. Most taste like candy anyway and they will sustain you for a very long time. I think it keeps sugar consumption (not necessarily sugars) under control because there doesn't seem to be a glycemic crash. Some have lots of vitamins-another good thing. Its just helped me. If I get protein then I tend to not think abou
  13. Okay y'all, here's the sitch- I have workaholic parents who own their own business. They are just like me (no sleep, all work, no fun, no exercise, no life). The problem is, they seem to understand all about POTS but forget all of that when it comes to work that needs to be done. I have full time work, part time school and full time POTS. My life is freakin' rough most of the time. Plus, I'm on salary which means I have to work well over 40 hours a week to keep my job. The first thing they do if find more work for me to do!!! I think they think I am their slave for life. I live on my o
  14. Not a guy, but just wanted to say Hi from Salt Lake! Kits
  15. Yes. I have been called Green many, many times. More green before I was diagnosed and put on meds. Its funny, I couldn't see it, but people completely independent of each other would bring it up. I had never heard anyone on this board say the same thing. I wonder what it is that causes the green mask? My labs are cooking right now for Myesthenia Gravis. A positive result would explain so much. It would really explain everything. Does anyone have this and POTS? They seem to be very closely related. I wonder if we all have a MG and Shy-Drager variant that hasn't been named yet. I describe
  16. I layer Zofran and Compazine. Zofran oral did nothing for me- and I'm sorry 8mg? They give chemo patients 25mg. I would try and fight for more. I know they give you like 2mg in the ER as if that is going to touch a thing. I tell them to come back with the entire bottle and we'll talk, otherwise I will be occupying their bed alot longer. Funny how the dosage jumps when they hear that. I take 12mg every 4 hours and I get the liquid Zofran from my home health. They can supply you with syringes and you shoot it directly into your hip or leg muscle. You don't find veins, you just punch it in
  17. Just to answer some questions, I did take a long time to titrate up. We kept increasing it until it actually made a difference, and 0,4 was the only dosage that actually worked. I had extremely low blood pressure. Once I was admitted with 60/20 and declared a shock patient. When I went to Mayo, Dr. Low checked the dose and said that it was totally appropriate. In fact, my TTT was negative and he said it was solely because of the high dose. My prior TTT went to 150 BPM. It did tremendously help my nutrition. When it was started, I was admitted for malnutrition and was at that point eating
  18. Have they screened you for systemic vasculitis? Sounds a little like that with the jaw pain and all. Just wondering... Kits
  19. I am taking .4 and it works for me. I was soooo miserable before it that I could barely lift my head off the pillow, could not sit up for more than 2 minutes and ate about 1/2 cup of food a day. The dosage makes it so that I can work a demanding job and go to school. I went off of it for a gastroparesis test a year ago and I was right back at square one. There probably are side effects, but nothing is worse for me than being the way that I was. So far, no probs with K+. Its been the miracle drug.
  20. I've had extreme heaviness before that they've said is an autonomic storm, losing strength in my legs (felt like I was always walking uphill), but not unilaterally. Any visual disturbances? Did the person notice, or have you noticed a facial droop? Did you have to search for words, did you feel sudden need to run to the bathroom? I would really keep an eye on this. If you're talking to someone again when it happens, I would ask them if you could grip their hands and see if there is an actual loss of strength, or if it just feels that way.... Kits
  21. I once asked the head Neurologist this question when I was admitted and he didn't know the answer. Since then, I've learned a few things. 1. Try altering your schedule. This one came from my mom. I tried waking up at 3 am and going to bed at 6pm. I have to work 9-5, so this was an attempt to turn the AMs into PMs. It did work for me, but the world kept intruding after 6pm and I was losing too much sleep. Maybe it will work for you. 2. I kept my blinds shut and this keeps the sun out. This worked a little bit. If you get too hot when you wake up- you will likely feel worse. Mornings, I am
  22. Hello, the is Kits here reporting live from Valentines Day night. In just about a half hour, the blasted holiday will be over and I will return to sanity! I have the suggested movies on, prescribed lovely chocolates, and I just downed the 6th cupcake! On the bright side, my taxes are done and if you can't have a boyfriend, at least get your money back from the government! I just wanted to thank everyone for replying to my questions. It made me feel much better, and guess what?! I am communicating with a pretty hot guy through EHarmony. He is an ICU nurse and has said at least three times tha
  23. I LOVE smack-a-hoe!!! That made me laugh so hard! I need to add that to my own workplace arsonal. Also therapeutic, if you have I-Tunes is to buy the Britney Spears Video "Piece of Me" or watch it on youtube. I imagine dancing it out on the table in the middle of the boardroom. Sometimes I sing it in my head at meetings. You could imagine dancing on the desk of the FAT (Fragrance Assault Troll). Pure Therapy. I am so glad you made a new friend. It seems that she, too, is glad to have made a friend. Situations at work bring out the worst in some people and the best in some people. Kits
  24. I first heard of this when my co-worker was diagnosed with it. Usually a very industrious person, she would have bouts of pain and general feeling poorly. It is a very real thing. I am glad you have a diagnosis for what it is worth, and I am glad you are on a pathway to treatment for it. Best of luck at Mayo. I was very pleased with Dr. Low and I hope that your experience is a good one. Stay warm while there, you'll be glad to know there are some underground passageways, so you may not have to go outside often to get around. There is a very darling Barnes and Noble down the little alley w
  25. Okay, so this time of year makes me a little antsy with Single Awareness Day (Valentine's Day) and all. Since being diagnosed 5 years ago, I have had lots of social stuff, but I just don't really care to hook up with anyone because I can barely take care of myself. I have lots of friends who are bugging me to date online, but I just think that would create even more stress in my already packed life (full time work in a demanding job, part time school, full time advice from parents, plus part time work in parent's business). Plus, how do you handle a blind date with having POTS? Wouldn't the s
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