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Everything posted by Kitsakatsa

  1. I work a full time job that is often more than 40 hours/wk, a part time job, and this is the first few months that I haven't been in school also. I am very grateful for that. At one point I was working both jobs and going to graduate school full time. That was very hard and I was more than miserable. Now I have to figure out how to pay those student loans back. By this time next year, I'll probably have to take a third job. I wish there was such a condition as "working disabled". I really feel like the perfect thing for me would be to work part time, but I cannot afford anything like tha
  2. It sounds like post prandial neuro blood volume drop. Something that most pots patients have. When you eat, your blood flow fluctuates to your digestive area to work on digestion. Since pots pts have problems in that area, it really focusses in on it. That leaves a lot less blood for your head. I've seen small naps recommended for the time after meals. Hope this helps, Kits
  3. I wouldn't panic if you can't get the shot. My doctor said that in the category of those barely functioning (including his POTS patients) he has seen those patients get much worse and debilitated for a period when they received the vaccination. He's recommended no shot for those in that category. He said he's hospitalized too many of them to be comfortable with anyone else getting it. He also said if I decide personally to get it that I should contact the office so they can be aware and keep some appts open. He also said that there is emerging evidence that it has contained within it a liv
  4. Okay, this is what I was told but don't panic until you talk to a doctor about it. I was diagnosed with Adies this last spring. I have an eye doctor that did a double residency in neurology. Every year, he said he needed to conduct a special occular neuro exam and every year it has been negative for any problems other than far sidedness. Well, this spring he said that that I had positive Adies in both eyes. He said that it manifests in one eye, and then will eventually manifest in the other eye. He said that it is due to Dyautonomia. He also said that those with Adies will eventually los
  5. Adderall opens up a whole new world. I was on Provigil, but it wasn't as good. Adderall is fantastic! My next cat is either going to be named Egg Nog or Adderall. I can't decide which. Kits
  6. Just an ENT and it was from a basic hearing test. They could see eustachian canal dysfunction and some of my symptoms were when I jumped up from sitting that the hearing would totally go. Apparently, that is typical of this problem and correllates with dysautonomia. This doctor works closely with an Internal Med and Neurology office and so sees a good amount of stuff like this. There is no treatment. I was lucky that I didn't have to go through more testing and specialists though. Kits
  7. I've been dxd with Adie's eye this year (tonic eye). There is a research study 8 about 2000 by Dr. Low that includes tonic eye if you want to look it up. Its glamorous and more. I'm so thrilled. Kitsa
  8. She needs to be tested for Shy-Draeger. If that is positive, there will be a decline of health. We have come to understand that if the test for Shy-Draeger is negative, and POTS is her diagnosis that there should not be progressive nerve loss. Major Universities can run the test. she may have had the tests already. One involves putting electrodes on extremeties and testing the response. It feels like little burnies or as my brother calls it "Jack Bauer is in the house"! The other involves having her breath in a valsalva maneuver. This is basically like blowing up a balloon and makes most POTS
  9. Yes, this year I was diagnosed with Endolymphatic Hydrops. Apparently its permanent and its from dysautonomia. It sounds like everything is in a tin can and the bass in the normal, natural world is horribly loud. There are sometimes that I cannot hear and everything sounds muffly. Yes, fabulous. I had never heard of it until I had it. One of the hidden joys of POTS, I guess. Anyway I wanted to let you know that you are not alone. I wish I knew more about it. I am worried about vertigo in the future. I think it must be a really small subsection of people that get this. We must be the
  10. I had swine flu in June and I did a post about it in June about how it was and what helped me. I don't remember all that I said, but I had a grocery list of things that I really needed. I'm going to look it up and get stocked up again. We have major and detailed plans in the hospital and at our Manager's meeting this week they said that scientists have found that this flu actually turns your immune system against you. The stronger your immune system, the stronger you will fall. I haven't looked for written substantiation of that, I think the results are awfully preliminary. They suggeste
  11. I've given up on dating.....completely.....for infinity! There is one thing I do know though- I had the unfortunate opportunity of interviewing a candidate who seemed to be a perfect girl. Long blonde hair, skinny, bouncy, whatever. You know what we girls always think that they guys want. Well, after 10 minutes of talking to her, I was ready to rip my head off. The perky sound was giving me hate seizures and her personality reminded me of the fake Giorgio that came out in the 80s. She may have even had it on. She was also quick to tell me that everything thinks she's perfect. I took thi
  12. I don't think its dumb. I think some of the reason why I have been able to work is because I've literally kicked my own butt out my door every morning for the last 6 years. I didn't have it easier than anyone else, but now it is easier because I pushed myself in a direction that was reckless, unreasonable and impossible. If you don't push your limits, those limits will define you. Just like the song: "Sugar, we're going down swingin'"! Good on you. By the way, I'm not judging anyone-that's not my style. I just know what I had to do for me and my sanity. I'm still horridly sick. I don't p
  13. Here's my 2 cents, which is all I have either. If I were in your shoes- I would switch jobs pronto. Being a custodian cannot be easy on your POTS. I work FT and if I were a custodian, I would also only be able to work part time. I would be miserable. I don't know how you are doing this!! If you got a desk job, you could work enough to get benefits, I bet. Right now, you are in a crisis and you need to do something differently. I bet you are going without meds too. Here are a few ideas if you want them: 1. Get a Patient Accounts Services job at the hospital. They generally hire this dept wit
  14. I have a doctor that is 1/2 angel and 1/2 big giant nerd and he said something once that has changed my mornings ever since. He said everything that you guys have said about hydration etc, but then also said that what takes a normal person's body less than a second to respond to an upright postion will take a POTS body until 2pm to adjust. He said to get up at one point and lay in the recliner with the feet in a position that is neither completely up nor completely down (some recliners have a mid position or you can put an obstacle there under the foot rest). Tilt the head of the recliner so
  15. I don't have sweating, but there are days that I am so hypersmelling everything that I wonder if 1. I'm going crazy, or will by the end of the day, 2. Have suddenly gained super powers. I work in a hospital, so you can imagine how distressing this can be! I can smell sheets, shampoo, water, everything at all once. It doesn't make me sweat but I wonder if the area of the brain that identifies smell is connecting with dysautonomia in some way. Wait, is that the hypothalamus? I forget. I'm not a clinician and I took classes of that sort BEFORE the Adderall LOL! When I was first experiencing th
  16. I chuck the laundry over the loft at the washroom and nearly give the cat a heart attack, which is great fun. I keep a yoga mat in my office at work, claim it is for after work yoga, but really it is for after lunch naps I have a handicap pass so I don't have to walk far on bad days and it comes in handy on vacation I use the handicap pass to check out at customer service on the day after thanksgiving instead of waiting in the long lines. Flash that- they don't know what to do besides let you check out there. I take advantage of their minimum wageness and their overall holiday stress level.
  17. Just because it's sound doesn't mean it's not gross. yeah, wait until one of these things makes it to your brain. You can never actually get rid of a parasite in most cases. It's like a tattoo...on your guts! EW!
  18. I will be yelling with you. These low sodium people are so annoying!! I have a co-worker who concerns herself much too much that I eat salt on purpose. She prides herself in her low sodium lifestyle. I just say "whatev, its people like you who are wrecking the high salt dream world for the rest of us" and then I say "oooh, Friday night- time to get wild with the salt shaker". I guess I bring it on myself, LOL! Ah well, no one had ever mess with the Top Ramen or it is smack-down time I say! What is America if you cannot eat a 2000mg sodium meal for 30 cents?!
  19. Just FYI while we're on the subject: Single-Dose Monovalent H1N1 Vaccine Appears to Be Immunogenic Medscape Medical News http://mp.medscape.com/cgi-bin1/DM/y/eCaeC...mp;uac=114819MR This news release on Sept 11th cites a study that suggests that people receiving the vaccination could have an immune response to it. You should consult you doctor about your individual risk factors. There was a study published by Mayo 8 years ago by Dr. Low that suggested that POTS is itself an immune response. If this is true for an individual, it would stand to reason that this vaccination may carry more ris
  20. Slowly, slowly, slowly! I am a total turtle bum when it comes to exercise and I still get sick. I know it helps, but there is no other way but slowly. If you watch Biggest Loser, do it with a pint of ice cream- not with a treadmill! POTS people need their own category of what they can do. These are not excuses- if you do too much you will be sick. No one should encourage you to be sicker than you are. Everything takes a billion years with us. Don't get discouraged!
  21. By the way, if you were going to fake something it wouldn't be two major illnesses that the average doctor/resident/person, whatever, has never heard of! Tell her to put that in her pipe and smoke it! Kits
  22. Everyone has a backpack that they must bear. In our backpacks are many items. Some items are very heavy now, but will be helpful later (like water). Some of us have others to help carry our backpack down our paths, but others also have those who hang on their backpack and make it heavier. As if hanging on your backpack will somehow validate the objects that she has herself placed in her own backpack. I will help carry as many backpacks for others as I can, I will not allow anyone to place stuff in, or hang on my backpack. I would set limitations with this sister. You do not need this and
  23. Nausea is main symptom. I take a combination of compazine, clonidine (at night- helps the next day's nausea), and Zofran. The Zofran is IM (Intramuscular) injections. The pills are spendy, but the Zofran IM is given to you in vials and usually available through home health, which (at least for me) makes it much, much cheaper. You get a supply of syringes and long micro needles. You can hit it in in the hip, or right above the knee. I have alot of scar tissue there, but it is very much worth it. I am prescribed 12 mg up to 3 times per day. I whole heartedly recommend this route if you are
  24. I have two cents that you may not want. There are meds that may make the difference between working and bed bound. I notice from your sign-off that you are trying the wholistic route. It might not be working. My way might not be working and you could argue that my meds are damaging me even more. There are days I would agree with you, but on the days I miss my meds I am in bed. Also, sadly, I gravitate towards whole and organic foods- they just taste better. Every time I do- I miss out on the salt and I feel much worse. I don't think there is a right way. I respect your beliefs. I just
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