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Kitsakatsa

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Everything posted by Kitsakatsa

  1. Wow! I'm the Winner!!! (winner dance here) I am on 4 .1 tablets- all in the morning like a big med cocktail- I take. Hey- maybe that's why I keep gaining weight. oh.
  2. Let's talk romance!! I can see your point on the "no one in sight to marry" point. I didn't want to get married because I was having so much fun being single, going to school (I have 2 master's degrees!) and working good jobs with money. I had a fun social life. Then I decided that it was time to find someone and BAM! Pots! So I hear you on that. But things get better. YOU ARE SO YOUNG! I am much better than I was 2 years ago and 2 years seems like an eternity, but it is really just time that you get to spend on yourself. My social life has tamed down quite a bit, but I still have one. It may have delayed finding someone to marry by a few years, but I am extremely proud of myself for handling this illness and I will end up being a happier and more capable person when I find my husband- even if I still have POTS. You will find yourself changing for the better, my dear. Someone once said "pretend that you will find the love of your life at age 30. Live your life to its fullest until that day". What will you do?
  3. Yup. All around. I hear ya. I tell people that it is exactly like having heat stroke and stomach flu and then say "would you go to..(work)..(vacation)..(dinner)...(the opera).. with that?! No, you would be bawling you head off in bed. Now imagine having it for ___ years. This would not even be a conversation that I would have with you and this would not be a demand that I would make of you. The line is either drawn here in the details, or later in the ER. There is no getting around that". That type of conversation usually helps. It is frustrating for everyone. I think that co-workers and family members try and wish it away for us and reminders that we are still struggling cause them to lash out at us (of all people). Good luck. Maybe your doc has some recommendations for the flight- like Ambien that makes you sleep.
  4. Mestinon has worked wonders for me. It has truly been beneficial and I can feel the difference. I experienced profound muscle weakness following bronchitis in Nov. My doctor had me go off of the Mestinon for 24 hours and report back. He said that if it were the Mestinon, I would feel better after about 12 hours. At the end of 24 I felt much worse and so went back on it. We concluded that the weakness had to do with dehydration and a usual pots crash made worse by the bronchitis. I was tachy after squatting- so that apparently is how they tell. I wouldn't go off of Mestinon without your doctor's instruction. Some things work for some, some for others. Its really about the right combination for you. Don't become discouraged if these common things don't work right for you. We are all still working on our right combinations of everything.
  5. You are able to stand that long?! Or, is it that you are walking around etc. I have very achey feet, but I think mine is because I am so weak and out of shape from not being able to exercise. Maybe its your shoes. Some people need supports. Ironically I think that the medical hose help because they move the edema that you might have in your ankles upwards. If you don't wear medical hose currently, that might help. I know that preggie women wear ted hose for the same reason.
  6. Tearose, Those faces just cracked me up!!! I just about fell out of my chair. I haven't laughed so hard in weeks. And, Ernie- it IS like playing Chess. I have never come across such a perfect way to say it. I don't know why I thought that I was so alone. Everyone's responses has made me feel so much warmer tonight. I know that you all have alot going on and my problem is small compared to what many of you are facing. But your time and responses have made me feel so much better. I don't think that I could find a group of people who better understand the struggles of this syndrome. You inspire me.
  7. You guys are so great. I could hardly get home fast enough to see if anyone ever felt the same way. I've just never seen a dismissive side. This guy saved me. No other doctors would listen to me and he admitted me and found the diagnosis. I owe him a great deal and I know the hospital is crazy busy right now, because I work there too. I am trying to be understanding. I don't need alot of warm-fuzzines from anyone, but this change in character caught me off-guard. Do you ever get the sense that one of your doctors has just given up? I guess I am starting to sound like a crazy patient right now. I've worked 12-15 hours each day this week and have an even harder week coming up. The nausea will not end and I've even started covetting the patients who are under anesthesia. I began to feel a little encouragement in the waiting room because I thought- here is someone who will understand and maybe have a new idea. I just felt like he said "yeah, yeah, what do you want me to do about it?" I'm afraid that this is the end of the useful medical advice and that I will be on my own to figure this out forever. It was a regular follow-up and I had to get my FMLA paperwork signed so that when I'm sick, it won't affect my benefits
  8. I just went to my doctor, who is always warm and encouraging, and just had the coldest response from him. I had to go to get some paperwork signed and he basically said "why are you here?" It made me feel like I should never go to the doctor and maybe schedule a return appointment for no less than 39 years from now. I always check in every few months to see if he has any new ideas and the time has always been worthwhile. I was there for a concrete reason afterall. I just feel very alienated and that I've lost someone in my support network. I'm very Blue. Have you ever felt that your doc has left you behind?
  9. I am a financial director of an Operating Room. I good at-home job may be working for Jet Blue as a reservationist. I know a bunch of people who do that. You may even try medical transcription...
  10. Showers are the worst! I am so gasping for breath when I take them. I have to take them at night when my BP is higher, nausea lower and I can go and lay down for awhile after them. If I take them in the AM- forget about getting to work anytime soon! I take 4 florinef pills in the AM all at once. Is this bad? I thought about spacing them- but then I usually forget and then that's just bad. You've got to love this stuff though. Relatively cheap, small and helps keep all the germies away. I'm going to start calling them my sunshine pills. Let the pharmacist figure that one out!!
  11. I had this from the start and my doc couldn't understand what I was describing. It is like being on pain narcotics. The sensation has slowly faded, but comes back when my BP is low or when I have to take Percocet for menstrual cramps. Same exact feeling. At first glance, I can't tell if I'm upright, tipping or which direction I'm facing. He did extensive ear/head tests (VNS?). Nothing. Must be pots.
  12. Yes, Yes and Yes. I have such vivid dreams, on Mestinon, that they are actually more intelligent than my waking thoughts!! Har Har!! Last night I dreamed that I bought a drum set and it included details like getting a course catalog to the local university and taking the classes, buying the right drum sticks and surprising my parents by drumming my way through the movie "That Thing You Do"! Oh, did I say intelligent? I meant "vivid" ! I've also started kick-boxing people at regular intervals. I certainly am alot more confident in my dreams now!! One was in matrix-like cat movements and I foiled two would-be backpack thieves!! The transition onto Mestinon was hard for me, but one million times worth it. I started very slowly and when I had wierd flu-like feelings, I backed down a bit, gave it a few more days and tried again. I did this over and over. I am now at 60mg every 3 hours and right now I am flyin' high! My boss says that she really has noticed a difference- that I seem to be able to handle Thursdays and Fridays when before, I would nearly collapse half way through the work week. I don't have that "staticy" feeling as much as I once did. Good luck. I would give it time.
  13. I feel for you. I have to work full time too and I have gigantic student loans that I am going to put off forever through more school or somehow. The problem is that there isn't a break for the working pots girl. I have repeatedly asked the student loan people about some sort of plan and it is basically black and white. If you are working, you are paying. I wish, like you, that there was some sort of financial aid aid for those who must work but cannot afford to pay them due to disability. (It's not like we can go get a second job or anything!!) So I'm in the same boat and I feel for you. I've just completed another 10 hour day and it looks like my weekend will be work also. This is our challenge right now. I opened a fortune cookie last month that said that I would meet a challenge and be stronger. I'm sharing this fortune with you.
  14. Hang in there. You are not losing control, you are gaining it and doing a very brave thing. I think that everyone has the right idea with the hobbies. In my free time, I grab a barstool and cook the kinds of things where you have to chop everything into a million little pieces. It's actually SO therapeutic. I have the TV on, and I'm cookin' and all of my worries just slip away. Another thing is scrapbooking. It sounds lame-o, but it takes lots of stuff and forever to make a perfect page and I just get lost in it. It's active enough to completely forget about POTS. And-you can make things with scraps so it doesn't take over your medication budget! Also- have you thought about distance education classes? Everything is done either through the mail or online and you go at any pace as long as you complete the course in 9 or 12 months. Nearly every University has them. There are usually tons of classes like new languages, literature etc. Because you can go at a snails pace- there's very little pressure. I know you can find loads of things to do to keep your mind busy. Just take a little at a time, and congratulations on your decision. It must have been a hard one. But then, you sound like you are one tough cookie!
  15. I've had a very hard time flying since having pots. I just returned from a trip from the west coast to New York, and the plane ride was not fun at all. I don't know why. For me it may be the rocking motion, the closeness of the people around and the inability to just lay down. I think also the noise. I felt like I do when I have really low blood pressure. On the return trip I prepared ahead by loading up on salt. Then on the plane I asked for hot water and I took bullion cubes with me to make a high sodium broth drink. I had gingerale and that helped the nausea. The ride seemed to be just a little easier. I also took along some Ativan in case I got too anxious and feeling bad, then I would just go to sleep for the duration. All in all, it wasn't too bad and maybe my anxiety of the whole event was actually even worse than the ride itself! I hope that you have a good flight. Maybe if you turn the air on you, you will feel okay. I didn't think about that one...
  16. Important when discussing the correlation with Heart Failure. HF is an incidence of insufficient NET activity- not the other way around. To make the picture complete, an increase load of Seratonin activity would have to be present and you would have another problem that would cause that. It may be possible to mimic the recipe if you were older and loaded up on caffeine and stims every day- but just keep it in mind. We don't want people to panic here!
  17. For those who want to explore: the gene is SLC6A2 and there is an article explaining the NET gene at: http://www.clinicalwindow.net/cw_issue_20_article3.htm The article talks about NET (neuroephinephrine transporter) makeup. Toss aside the part about the role in heart failure and the article has a comprehensive description about the structure of the gene. Also, information about the genetic map can be found at: http://www.ncbi.nlm.nih.gov/Omim/getmap.cgi?l604715 and there is a bunch of interesting stuff to click on there to see the alleles and everything. I've only found 1 research study that contends that a mutation of SLC6A2 does not exist in POTS patients, but it was a really unreliable source and the study did not have a reliable proband. My questions are centered around environmental exposures that may cause the mutation. That is to say, mutations that exist due to exposures in former generations or have occured to each patient in present time. If anyone finds useful links on that- please post!
  18. I have to take Percocet for endometriosis and it does not play well with my Pots Meds, one of which is Florinef. In theory it should, since it is a depressant and I have stimulants on board. It does not work though and I feel a big increase in misery when I'm on both. I think that everyone reacts so differently, that you have to try different pain meds to find the one that works for you. There are several meds now that have reached the OTC open market. I would start with simple things first (ex: advil because it is ibuprofen alone instead of excedrin migrane which is acetaminophen and caffeine combined with ibuprofen).
  19. Yes, Yes and Yes. Exactly as you described. I have a scale that shows the amount of water in your body (Bed, Bath & Beyond) and I will notice that right before I have a flare, my body water will drop to 34.0. 36.0 is after I've gone to IV therapy and I have less symptoms. I'm trying to manage my water table and see if that helps with the flares. Another effect- I will get a flushy warm feeling even when standing for a few seconds. Then I know to grab the high sodium soup stuff, prioritize my work load at work and prepare to take it a little easier (if not just go to bed) for a few days. The funny thing about flares is that you always try to think about what you have done wrong. Mayo told me that we have only about 40% control of them. We can up the sodium, avoid all of the stuff that makes pots worse, but flares depend on what the brain decides to do and most of the time it is beyond anyones control- so pamper yourself and don't beat youself up about them.
  20. First of all, I want to wish everyone a wonderful thanksgiving full of rest, fluids, medication and SALT! At least this is the time of year when us potsies get to load up on the abundance of sodium and eat 6 mini meals a day!! Secondly, I would like to express my thankfulness. I am thankful for: 1. My family and their ability to ride through the bumps with me. 2. My physician who diagnosed me and who tells me "I've got your back babe, we will get you through this" whenever I am really sick. 3. Zofran. 4. Shampoo and Conditioner in one bottle (60 second showers!!) 5. Amazon.com and my credit cards who support me through holiday shopping and insomniac events. 6. TIVO, DirectTV and that I can skip through the food commercials 7. My health insurance! Let me know what you are thankful for. I am thankful for each of you who post and give me a lunch-time pick-me-up. Even the emails about how hard something is is a reminder to me that I am not going through this alone. Thank you to you!
  21. I've been extremely weak for these last two weeks following bronchitis. Its like POTS is starting back at square one. Has anyone had this and how long did it take you to get back to the routine kind of POTS. Has anyone ever found a reason for it other than POTS? Im worried that I broke my brain!
  22. I was so dismayed to find that when searching for "POTS" in WebMD, it asks if I really meant to search for the "Potty"!!! I submitted a comment that they should have it listed. Maybe if everyone here did the same, other fellow sufferers who are undiagnosed can find the care that they need! If you have a moment, send one in. We searched the site up, down and backwards when I was undiagnosed and if they would have had POTS on there, we would have found it and I would have been treated sooner. I just really think that the effort is worth it!
  23. I hate wal-mart too. I blame Wal-mart for my Pots. I was feeling just fine and dandy and then went to Wal-mart to buy a snow shovel and BAM! POTS! I still really think that it was their germy carts or something. After that, I can't stand to be there- too much stuff- too many people who bring 5 generations of their family to help them pick out toilet paper-too many of those anoying smiley face signs. My heart belongs to Target. I still stand in the aisle for an hour and can't decide what to buy, and the longer I stand the less blood gets to my brain and then suddenly I find myself seriously considering a massive candle purchase when I just went in to get squash or something. We call it a Pots-out. My mother makes me call her whenever I go to Target and then she will call me back 15 minutes later, ask me where I'm at and then say- Walk Away! Go get the squash. You guys must have the same thing happen.
  24. I have a desk job in a high stress area of the Hospital. The job is very demanding but I live on adrenaline- so I love it. I have a BA in English (pre-pots), MBA in International Business (pre-pots) and an MBA in Health Care Administration (with pots). For all of those who are trying to go to school while having Pots, hang in there!! I feel your pain! I have always worked full time + and going to grad school on top of that was certainly not a picnic. I had to give up my extensive social life (ha!) among other things, but stick with it! It can be done!!
  25. Has anyone been able to intentionally lose weight while having pots? I am struggling with exercise, but it is not enough for weight loss. I can really only eat BRAT diet foods due to nausea (total carb diet). Has anyone found a way to lose weight?
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