Jump to content


  • Posts

  • Joined

  • Last visited

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 turn purple and cold, kind of like Raynauds, but in only 1 finger (Yes, very fashionable') Does this profile sound familiar to anyone? I think its wierd that after so many years, now new dysfunction etc. Each consulting MD said it was due to dysautonomia, but I've never read these as part of POTS necessarily. Does anyone have experience with these? These are making it very hard to get ready for dates!! (or even get a date!!)
  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 frustrated. Have you noticed that movies are especiallly hard to get through? I've been told to never go see Transformers! (I never do this, but this calls for a LOL!)
  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 people are coughing if you are on Florinef. As soon as you have any symptoms, be seen and don't settle for a Stat Test. They are 50-80% inaccurate and Tamilflu has a 72 hour window of effectiveness. While I had this, three people died just miles from me and all three had multiple negative results from the Stat test. This experience has changed the way I value anything. If I hear coughing, I am out the door! Do not get run down, do not touch your nose unless you have washed your hands. If you have to be in a public place and cannot leave- get a mask on. They are free at every clinic and hospital. Again, I don't want to panic anyone but this flu definately made POTS worse. There is no question about it. I want to be very direct with you. The mistake I made was when the sore throat and fatigue started, I ignored it and ran around shopping the next day and got even more worn out (not to mention probably exposing other people), then it hit an I had nothing in the way of preparedness. I had no physiological reserves, I had nothing to help me at home. FYI Here is my list of what I needed and what I wish I had when it hit: Cough drops that numb your throat Pediasure Liquid Warm Mist Humidifier with distilled water (plenty of) My Cold Mist Humidifier made me feel much, much worse. Pediasure popsicles Sleeping aid (don't take these without checking w your MD, but I just wanted to be knocked out) Stuff for nausea like saltines and bananas/applesauce and bread Fluids like G2, Gatorade, etc. Canned Soups and broths- instant stuff. Don't think you can make Ramen, you can't stand nearly that long) Loads of soft foods that are easy to eat and did not contain garlic or anything like that. Hot Cereal, donuts, that type of stuff. I had compazine and zofran- I was lucky in that. Compazine suppositories would have been lovely. Peppermint life savers mandarin oranges and small cups of cold, soft fruit Boxes of microwaveable veggies, or access to warm, soft veggies and noodles Orange Juice Phone numbers of 24 hour pharmacies Interestingly enough, my first line defense was dayquil/nitequil and it had absolutely no effect. I think the total duration of the flu itself was 10 days. My best advice is to stay down and don't try to even sit up for too long. You have to ride this out and getting weak all over again doesn't help. I made the mistake of trying to build strength too soon and I got whaped with a horrible form of bronchitits that wouldn't respond to anything. I hope this helps. I made alot of mistakes that I hope may help someone. Get care quickly and that will make a big difference, also let people around you help you. Kits
  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 that coffee was sent to the earth for a reason, and it was to make pots patients happy! Kits
  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 the nurse told me that perhaps my whole problem was that I needed to lose weight (I had lost 40 pounds in the previous 6 weeks from not eating) and she recommended sugar free jello!!! Yay! Science!! All I can say, it keep your head up high. They are acting out of dissatisfaction with their own lives and it has nothing to do with you. You should be proud that 1. you were smart enough to avoid cellulitis, 2. you followed instructions, 3. you took it on the chin and you will keep going in spite of being misunderstood and mistreated. You should buy yourself some cake or chocolate or whatever for being the better person. Kits
  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, you have NO VASODILATION on it. I told my MD he is never going on vacation and leaving someone else in charge of the joint again!
  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 tendon reflexes. He said there are likely cranial nerve lesions that cause it- it is a denervation of the post ganglion yada yada yada (I was in a different state of denial by the end of the sentence). Basically, after having POTS for 5 years, I have new damage- which is different from anything I've read about POTS. Does anyone else have this? What happens when your tendon reflexes go (the hammer on the knee)? Can I still walk? Will I walk like a psycho, egyptian, etc? Has anyone had evidence of ongoing or new damage? Wierd. I don't know quite what to think. My scariest thoughts are of MSA, although I think I was tested quite well for that at Mayo. Kits I didn't even get a sucker...
  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 otherwise dissapate and evaporate. The rise in temperature prompts your system to take action (awaken) and move (physiological response to prompt increased circulation). The awakening and moving could cause an increase in muscle fatigue if it is constant and repetitive and there is some stuff that suggests that doing that all night leads to a buildup of lactic acid (the component of sore muscles) especially if you have to crawl out of your current position. Since we have craziness with circulation anyway, I wonder if you might consider a mattress that does not "hug" you back. Have you heard of those sleep number beds? I've always wondered if those are worth it. I hope you are asleep now..! I'm not because we have thunder! Kits
  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 about carbs as much. Kits
  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 own an hour away and they will come and get me so that I can do work for them. I think I could feel just a little better if I could escape the "when are you coming out/when are we coming to get you Friday afternoon abduction! Forget about having a social life!! Everytime I tell them that I am too tired, need down time, etc, I get phone calls at midnight with my mom saying she is still working, etc and that will last all week long. Then, my mom will say that she is sick now and I feel guilty all over the place. My mom says she has no one that they can turn to (my sib doesn't return their phone calls) and it seems that I am the big solution all the time to their problems. How can I say No to them? I am running at full speed 7 days a week. I really feel like the girl in "My Big Fat Greek Wedding" with the "Why do you want to leave me?" scenario. Should I get a T-shirt that says POTS in big letters? Should I have a phone message that says "sorry, can't come to the phone, have POTS REMEMBER?!!!" Do you think I can find research that states that POTS is contagious?.. Kits
  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 it as everything in life feels like a treadmill at an extreme incline. My doc describes it as walking in sand. I think of it as living in sand! Does anyone know if MG is corellated with POTS by any chance? Kitsa
  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. It takes less than 15 min to work and it is very much worth the stick (they give you long and very small needles) It may be a little expensive, but it was more expensive for me to get the oral tabs and have them not work. I have also found that clonidine at night reduces AM nausea. Nausea is my primary symptom, so this was a great find. I don't know how it does it. I hope this helps. Severe nausea is the most awful thing. Kits
  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 about a fourth of a grilled cheese sandwich per day. They packed me full of horrible vitamin stuff that burned like crazy going in the IV and Marinol (hey! What's a little marijuana between friends?!) but it was the Florinef that kept me from getting a gastric tube. The only problem has been that my stupid co-worker went to Brazil and brought back a hybrid bug and when I caught it, I was sicker than bats. My doc gave me stuff to send me to dreamland for a week and it took nearly a month of bedrest and 3 months to fully recover. I go out of my way to stay away from sick people, I won't go into an aisle if I hear a person coughing and sometimes if I hear bronchitis, I will even check out and go to another store! (I recommend all of this for anyone at any dose of Florinef) Kits
  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 nearly suicidal because of the sheer misery with nausea. This method went far with that. I make sure it is 65 degrees no matter the time of year. 3. I set the alarm 1.5 hours early, knock down the pills and sleep until they start working. Big improvement. 4. Recliner! This one came from my Angel MD, he said that most people transition from lying to standing in 3 seconds and it takes me until afternoon. I now sleep most nights in a recliner so that the transition will not be as dramatic. When the alarm goes off, I either head to the recliner and keep my feet down, or keep the feet in the slightly, but not fully, elevated position for the next hour and a half. By the time I get up, my body has been practicing being up for some time. 5. There was one suggestion to drink a full glass of water before getting out of bed. This nearly killed me (I think), it must be an individual thing. It made my nausea fly through the ceiling. 6. If there is any event, standing, going to the bathroom, etc that causes you to feel faint- return to bed or a chair for at least 15 minutes and then try again. This is important, because I believe that this sort of thing builds on itself and you need to reset your system before you have a dangerous event, such as falling. 7. Place your medications well. I take nausea meds and florinef both before I go to bed and when I get up. Sometimes this is only spaced out by 5 hours and I am on a really high dose of Florinef. I take it like clockwork anyway and I have played around with them to give them heavy coverage during the AM hours. Consult a pharmacist and then find out, within the recommendations, how your medications can work for you most effectively. Also, look at the side effects. I had one, Mestinon, that actually added more nausea than it was worth. Think critically with your MD about what the meds should be doing for you and what they may be providing you with that might be adding to your battle. Good luck. These are the things that have worked for me. Everyone has their own combination and, like my MD says, it is not a science- but an art! Kits
  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 that my picture is pretty. I'm feeling much better about things. Plus, he's in the medical field, so maybe he will understand a little more about POTS than the average guy? Anyway I haven't mentioned anything about my illness. Its a bit overwhelming as it is, and I want him to see me as a normal person first (as normal as I can be, right). So, we should have a date soon. It may have been tonight, but I felt it was a little too soon and a way-big pressure, so I told him I was going out of town. I don't want so much pressure that I actually live out the "died from dating" scenario. POTS makes me hesitate a lot, but then I was buying cat food and litter at Target earlier today and I thought- what a sad, single girl Valentines day activity. So, after the cat food aisle epiphany, I think I will go out with him. Everybody pray for me and my outfit!!! Again, thank you for letting me talk to you about this. I'd like to get back to a happy life. Kits
  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 way by the stores if you need a little TLC and relaxation! Kits
  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 stress alone do you in? I can just hear "Yes, she died from dating. She was doing her hair and changing into her ninth outfit when suddenly she dropped dead". I really think that can happen. Then I think of even having kids. I would have to go off all meds..florinef, adderall, compasine, plus tons others, correct? I went off them for 1 day for a test and was just down in the recliner. How do you take care of the kids after you have them? I can assume that they won't understand enough as a newborn to be fully versed with all the Mayo clinic latest research in order to schedule their diapers at a reasonable rate. That is, even if I end up being able to conceive So, I'm in a bit of dismay and am trying not to be too much of a downer amist the very happy red and pink couples everywhere and I have the following questions: Have any of you with POTS dated online? Have any of you stopped your medication in order to concieve? I find my thirtys are wrapping up and I don't forsee enough energy to get all of this done in the next two years. How have you found ways to cope with a life that is turning out to be a little less than you expected? Do you think its worth it to pursue love when you may not be able to offer children to your mate? Still, I'll probably celebrate V day with a Glamour magazine, copious online shopping, 1 1/2 cats and whatever pathetic redbox movie I can find to recluse in with. But, your answers will make it a little easier to figure the whole picture out. Thanks in advance! Kits
  • Create New...