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Everything posted by Kitsakatsa

  1. I've had POTS for 10 years, PAF for 6. Starting at thanksgiving commenced a 3 week flu Then, I had to travel for a week for work, Then Christmas with the fam for a week. Since my return home Saturday, I cannot stay awake. Yesterday, I slept for 20 hours. My brain feels like it is not connecting, and all I want is my bed. My muscles feel extremely fatigued. Plus, no matter what I eat, I feel food poisoned shortly after I eat it. (I've had nausea for 10 years, this is something different). Does this sound like just an increase in POTS? Wierd.
  2. Hi everyone: I'm continuing my blog about exercise and pots. I ended it after a horrid fight with my mother when she told me that I was burdening everyone with my illness. But, a had a lot of friends rally around me and tell me to continue talking to them about pots. I think it's just a good thing to get the information out there about this horrible disease because maybe someone will not have to suffer. I'm still making it into a more informative blog, but if you would like to visit it,: http://newoneburntoshine.wordpress.com/ I have a goal to run the Ragnar Relay Series in June. I don't kno
  3. Some of you may know me, I've been on this forum for years. I haven't been here recently because it's hard for me to read the posts. It makes me sad. I'm starting to re-freak. Who knows why. I read something today and I thought I would share "People cry, not because they're weak. It's because they've been strong for too long," So I guess there are those who feel completely beaten up and defeated, like me. I'm giving you and me both permission to just really feel sad and mad. But then I read something else that we both need to remember: "Having a rough time? Place your hand over your heart. Fe
  4. So anyway, one of my struggles with POTS is that no one ever remembers the name let alone what it is. Even my own Mom will be demanding and when I remind her of why I can't do something she'll say that she always forgets that I have POTS. Nice. Then to make matters worse, she'll say every once in awhile that someone asked her what I have and that she told them that she can't remember and can't really describe it but will report that she told them it's a brain problem. Nice. I thought- if she doesn't know what I have and she's been to Mayo with me then this probably flies over the heads of
  5. Oh, forgot to say that I tapered back down to 300mg in April and have had none of those effects since. I take it in the PM at bedtime now and not AM due to an online shopping spree that occurred while high LOL!
  6. It sounds like you have your questions answered, but I wanted to give you my experience as something to watch out for. I'm taking 300mg. When I still had major neuropathy issues, my MD moved me to 300 BID- so double the dose. This was in January. A few days later I had a sinus infection and of all things- the satellite dish was frozen, so no TV. I lived alone at the time, out on disability also so I was feeling some depression and chalked it up to the circumstances. The next week, I suddenly felt myself slide into a full on panic. Not a panic attack, but a panic type of depression. I was te
  7. In answer to a few questions: I have noticed that infusing more quickly (when I can get the hypertonic over 3 hours) means that the effect is quicker and the misery turns around pretty dramatically. However, a longer infusion (12 hours) has more staying power and there is less of a likelyhood of peeing out the whole thing. Also a quicker infusion has a vicious thirst that comes with it. This causes me to down a bunch of fluid and just washes the hypertonic out of the system faster. Make sense? Somewhere in the middle around 6 hours is nice and there is less of a risk of pulmonary effusio
  8. Not so much success with 0.9 saline, but dramatic improvements with 3.0 hypertonic solution. Results are noticeable within an hour if the bag is infused over 3 hours. It's a little hard to get it infused that quickly though because getting it as an outpatient sends off all kinds of flags in the pharmacy. Kits
  9. Okay, I thought that PAF did have the HR rise- but you are both right, it does not. I definately have the HR rise. I am really more confused than ever (doesn't take much), maybe these other things belong to POTS but it just hasn't been documented formally. There have just been some things (like the tonic eyes, then hearing loss) and every time my Doc says "oh that's because of POTS", but I can't find them documented in the POTS family. Just trying to make sense of it all. Kits
  10. So, how I came about this was kind of wierd and I cannot believe that it was missed at Mayo - TWICE! I was reading an article about the Midodrine whole sheelywag and there was a link to an Autonomic Failure article at the bottom, so I clicked on it and I think I've discovered that I have both PAF and POTS. Is that even possible? Here's why I think I have PAF- PLEASE correct me if I am up the wrong tree... It lists these things as belonging to PAF and not POTS and I have them: 1. Tonic Eye (Adies Syndrome) 2. Gastroparesis 3. A drop of 20 diastolic and systolic (each a drop of 20) on TTT. I du
  11. First of all, I don't think they will prescribe it for you for grades falling off. You have to think about what you suffer from POTS and how Adderall will help relieve that symptom. Until a few months ago, I worked in medical and had a high enough position to be privy to daily med alerts, trends, issues with doctors etc. There is a HUGE crack down that is starting on "college drugs". There have been alot of doctors prescribing this purely for grades alone and it has caused a major problem because it is likely to be stolen, shared and is a sched I drug. A sched I drug is the most addictive d
  12. I applied for the FBI before POTS and a year later was granted an interview for Quantico, Va. I had to turn the interview down. I couldn't leave my support system and I had just been dx. This was an interview for my dream job. What POTS has given me in return I cannot even describe. I have the full knowledge that I have a specific guardian angel. I have made connections with friends, who are also sick, on a profound level. My doctor and I are now friends. I am strong now and I used to be weak. I can say that I now have hope, faith and charity in my heart. Kits
  13. That is how I feel. I have more dull pain- but I feel so old. I'm afraid to get on the Wii because it might give my flexibility age in the 100s! That is strange pain. Doesn't sound fun. Thanks for replying. Kits
  14. My doc did a lupus test (cluster of tests) and my RA factor was high and everything was positive for Lupus, but I feel better in the sun- so we don't know. I wonder about straight RA though. I'll read more on it. I just keep thinking that I don't want to pursue it because I am overweight and I think if I just lost weiht- but I've been overweight for 10 years now (thx to taking amitryptiline in my 20s for headaches) and this has been a very recent change. I'll read more. Thanks for responding! Kits
  15. My word, you have a lot to deal with. I'm sorry about the Complex Regional Pain Syndrome. I know exactly what that is from my work in the OR and I am so sorry. That is not a fun ride. Thanks for replying. Kits.
  16. Exactly! I just mentioned it to my doc- I only had 10 seconds because the visit was for dis paperwork but I described it like I feel I'm in a car crash when I get up. I try to be a pretty active person now that I'm not working and what you are saying above sounds exactly how I feel! Kits
  17. Thank you. I do have Tramadol for menstrual cramps and that does help a little but I only get 10 pills per month (Utah is hyper crazy on poly pharmacy pain meds). With your Ehlers Danlos, did you feel that you were hypermobile before you were diagnosed? Kits.
  18. Oh also, do you want to hear something wierd? After just a few minutes, the vibration of the car on my feet becomes so dang painful!!! Have you ever put your feet in ice water? It is that grade of pain. I went to a foot doctor, but he just said "here's some arch supports and my bill for $200". I am not a complainer, but I just really think that something is horribly wrong. I just don't know what. Kits
  19. Does anyone have this? When I stand up after sitting even a couple minutes, my joints are in extreme pain. They are super stiff and I even lose power in my muscles while going down stairs sometimes. The joints hurt to the point of an inability to move after a while they seem to warm up. When I run errands, my hips hurt like they are held on by safety pins or something. My feet just absolutely kill. They are painful when I get up from sitting and then even worsen. I can't count the times I've found myself walking in the parking lot walking slower than the oldies in the walkers. It takes
  20. I've taken both online classes (finished an MBA) and campus classes with POTS. Here's the merry list of stuff I was in love with: 1. Adderall (lol, but seriously) 2. Laptop 3. Recliner 4. Small printer/copier 5. Frozen gatorades for the backpack 6. Handicap Parking Pass and Handicap Campus Parking Pass 7. Money for when paid parking is closer for sicker days 8. Markers, colored pencils (cognitive clouding seems less of a problem if you color code your notes) 9. Ipod with playlists: relaxation, energizing, fighter, etc. 10. Caffeine, Caffeine, Caffeine! I hope this helps. School is tough with
  21. LOL! I keep trying to pick up on the male pharmacists because the pharmacy is the only place I hang out now! I think I've done a hair flip so many times they think I have special needs... I forgot to mention the best from my own dear Mom: it's similar to your apparently traumatic menopause. She called to say that she figured out that I had nervous system damage from changing the litterbox because now I have two cats AND I am single which means that I am the only one changing it. Nice. I also thought that I would have died by now and all I could think was, my own mother now things that I so
  22. O th' material! I am recently disabled and the symptoms have been getting worse, but I worked for nearly 7 years with POTS and I have heard everything in the world. Here's my favorites 1. From a family member: "So....now it's your turn....so... you DO like men don't you? You need to GET OUT MORE so you can find Mr. Wonderful" (GRRR 50 hours a week plus school is not "out"?) 2. From a co-worker: "You need to just come with me and exercise a half hour every day during lunch, no excuses. If you exercised like I do, you would just forget about this POTS thing" also said "You would feel better if y
  23. I found them at Harmons grocery store, but that is a local store. I wonder if you might find them at places that have extensive selections of power bars. Maybe a REI, Sportsman's Warehouse, or even Whole Foods, etc. The price (this grocery store is horribly over priced) was $2. Could probably find them cheaper elsewhere. Kits
  24. I haven't been on in awhile so someone may have already posted this, but I came across a little wonder product that I think helps control my POTS symptoms. Clif (as in Clif Bars) Shot Bloks These are gummy blocks that are easy on nausea (easier than some of the other solid products) and contain electrolytes and sodium. They are small and portable enough to throw in your bag and when I tried it, it seemed to work pretty well. Here is the rundown: Nutrition Facts Serving Size: 3 pieces Serv per Container: 2 Calories 90 Total Fat 0g Cholesterol 0mg Sodium 210mg Potassium 20mg Total Carb 24g Di
  25. I am on 0.4 daily and I have a couple of thoughts- things that were told to me about Florinef from my Doc and also Dr. Low. I was told that Florinef ONLY works if the sodium level in your blood is high enough. Florinef is meant to help you retain and utilize sodium and unless it is there is adequate to excess amounts, florinef will not work. I would consider asking your doc about salt tabs or high sodium snacks such as cottage cheese and pickles (not together though, ew). I agree with Mack's Mom though, that could also be a cause. Once (while on Florinef) my BP was 40 something over 20 som
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