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Everything posted by WyomingGal

  1. I have been on and off sertraline for 10 years. At first it was for anxiety (I had a fear of passing out), and it gave me my life back. I was able to complete college and enjoyed every minute! This fear I had went away and then it came back and I guess I then had POTS? I think my BP always ran low, but I didn't have POTS until I had to deal with a nasty epstein barr virus. Anyway, I have usually taken about 50-100 mg of this med. I have come to accept that if it help me that is a-okay! : ) I tried Cymbalta, and it made me so dizzy. I do remember the very first day I was only sertraline, I looked pale and felt like I was in a video game, but it subsided and never experienced that again. I did start the sertraline with some clonazepam and I think that helped me too. Give it some time and do what feels right to you.
  2. i just stopped taking klonopin this week. I have been on and off it for 8 years (i am 27). I was only taking half of .5 mg pill at night to help me sleep. Now that i am a bit more active I felt like i was tired enough to sleep on my own. So i tapered down that half pill so slowly over a few months, lol. I was scared. I did have a week of weirdness when I started cutting in down some. Maybe this sounds super weird but i will share...I would go somewhere, like grocery store, and then get in my car and have this panic, like what it wasn't my car i got into but one that looks the same and had to kind of talk myself down for couple of seconds that obviously its mine because i had the keys to open this car, etc. It was sooo weird!! but that is gone now and i am optimistic to have one less medication!
  3. I have been having a similar issue the past few months. I notice it is worse when i am working at school, maybe all the talking/movement and the dry air. I try to run a humidifier at night to help. There isn't a chapstick that really hyrdrates my lips and feels nice-except vaseline (i use the cocoa butter one) Sometimes they itch too. I was beginning to wonder if it wasn't from the high salt diet, and it is drying out my lips, since its on most of the food i eat.
  4. thanks for sharing elena! i thought i would chime in as well. I have not visited this site in quite a few months because I have been doing better as well. I do remember looking on here for positive recovery type stories in the forum and there werent too many...although many pointed out that those people are busy living their lives. I think the biggest change I made was cutting out gluten, and I am pretty strict! I don't know where I get the self control, but it might come from being absolutely scared to death of returning to my lower points. I think my body is much happier now. Also boosting my immune system has helped a lot. Less processed foods, exercise and trying to get moving everyday, even if its a 10 minute walk. I know taking meds to help with my subclinical hypothyroidism helped just about as well as cutting out gluten. When my TSH starts to creep up, I almost know its happening by an increase in some symptoms, especially my energy! Thanks for sharing and keep blazing your trail of health!
  5. I do work. I substitute teach which is nice because I can take days off if I am tired. Don't know if I am ready for a full time job yet (to be a teacher) but I do know work gets me on a schedule and keeps me moving. I hope to work up to more hours. Bad part is when I work I am too tired to work out which isn't good either.
  6. Interesting topic. I use to love swings and even roller coasters. But now swings make me sooo dizzy! I did notice this after I got sick. I have even sky dived and went parasailing, but I don't think I would do that now. Funy how I never use to think about the long lines at amusement parks beyond the fact that it was boring. But I don't I think I could stand in those lines long enough to get to the ride(airport security is hard enough) : ) too many people...prefer calming things now
  7. I will it be getting the flu vaccine again. I was told that it does more harm than good when your already in the hole, such as having a weakened immune system, etc. I just need my body to focus on healing and not making flu antibodies. (epstein Barr is enough work) I don't know of any articles I thought it had a warning on theire about nervous system disorders. I know I have autonomic neuropathy so that worries me. Can you use something like that maybe?
  8. I had the ALCAT as well. Gluten was a moderate intolerance for me. Luckily I had cut it out about 6 months prior. When I did cut out gluten in feb of 2011 I actually felt worse for about 2 weeks. It was like a withdrawal. But it got better as I stuck with it. I also felt that I had another withdrawal type thing when starting my strict 4 day rotation diet I got from the ALCAT. I don't plan on eating gluten ever again. While I am still not where I want to be I am pretty certain that I could be in a worse place had I not stopped rating gluten. I think it helps to stabilize and calm the inside of my body and my immune system.
  9. I just saw a story on abc news on tv. They mentioned a girl who faints a lot and in one year had 12 or 13 concussions. She got a dog that can sense when her blood pressure is dropping and nudges her until she lays down! how cool is that! They said it was a heart problem but did not go into details. You have got to love animals!
  10. I substitute teach. That way I can say yes or no depending on how I am feeling. You could also specify the age you would like. Sometimes high school subbing isn't too bad because you deliver the lesson or you watch a movie, etc. I only do elementary but that's because it's what I love. You could maybe ask for only half days too.
  11. My TSH levels were initially really low when I got sick. Over the last couple of years they have climbed upwards. A couple of summers ago it was nearing 5.0 and I wish I wold have pushed for treatment. 6 months ago it was nearing 7, so the doctor finally treated it and I am now around 2, trying to get a little lower. It has dramatically changed the amount of energy I have.
  12. .1 mg florinef and midodrine (10mg, 5mg, 5mg)
  13. I just want to say something positive. I know a lot of people say some leave the board when the "get better", but maybe since I still feel scare at time I am always checking this board. I have had POTS since February 2009. I was ok for the first year and then had some sort of Epstein barr/cfs/severe dizziness issue. During all of this I have finished my masters, student taught preschool and 2nd grade, and have started substitute teaching. It has been a long long journey, but there's hope. I don't over due it as best as I can and have stuck to a gluten free diet for over a year. Also, treating my subclinical hypothyroidism has help immensely! I actually am writing this from school-they are at specials : ) I try to workout when I can, recumbent bike, weights, and horseback riding. I love being around animals and it makes me stop thinking about myself for once!! Of course there are tears at times, but without this junk in my life, I know I wouldn't be the person I am today. It has allowed me o connect with people on deeper levels than i previoauly had i know I am wiser and more peaceful than when I was burning the candle at both ends and not really finding that deep connection with my environment. Now I can be more of a leader, and I read in a book that when you are a leader your position is going to be challenged-that's the job you take on. (zen mind, zen horse is a great book about horsemanship but also life lessons i think) I know everyone situation is so unique, but I wanted to share this wih everyone and have waited awhile to be able to share this type of hopeful message. Hope everyone is realizi their strength!
  14. Being tired makes me dizzy for sure!! Also too high of compression stockings can mess me up just as bad. I never know! It is weird that I don't get really dizzy outside-just inside of a store, etc. maybe it's part anxiety? Going outside usually solves a lot of my problems-unless I need to eat
  15. I don't know the specifics of your situation but I can tell you about my experience. I have flown before I had POTS and during when I didn't know what was wrong with me. I have found smarwater in bigger airports which I grab when I get through security. Also I drink it and some G2 beforehand. I bring lots of food too since I do not eat gluten. Don't get hungry-just keep snacking every hour. Once when I was bad I freaked out at the security line so I told the lady I had a heart problem and couldn't stand for long and she let me cut : ) I wear compression when flying too. Last time though I think it was too much compression and I had too high of BP making me dizzy. You will be the smartest person on there when everyone is worried about blood clots. I bring G2 powder packets through security and it's fine. I usually am too tired the day after flying to do anything, so give yourself a couple of days to rest when you get there. And it makes a world of difference o have your husband there. I am always flying solo. If I get anxious, I remind myself " hey, come on! You have gone skydiving so don't be such a wuss. You have done this more times than you can count! This is exciting!" I also got a Chakra Deck app on phone last time and did some of the breathing exercises. A little coffee is good for me, but not too much!! One time I even made a list on the plane of the states I have flown to, and that helped make me feel like a seasoned traveller. A trashy celeb magazine is really helpful too! I could go on and on...most everyone gets a little anxious so ur not alone!
  16. i take both florinef and armour. I love my armour, it has helped incredibly with my fatigue and recovery time. Also it helped with my heat tolerance. I started breaking a 30 mg tab into fourths, because I knew it would effect me and I built up super slowly. I had some big heart palpitations while starting but I stayed calm and it would pass. It has been about 6 months and I am still at a TSH of 2.1, and we are trying to get it closer to 1.0 because thats what I wanted to try, even though to the doctor my level is now normal, but I think i can do better! I was excited to support my thyroid because I know that there's no way my body can attempt to heal any neuropathy with a sluggish thyroid!
  17. I get it! My back was sore and so I went to a chiropractor and it was way tender. I could count my heart beats in my lower back as I lay in bed! Do you notice it when your hands are hanging at your side? Are your hands a weak or sensitive spot for you?
  18. i know a doctor told me that most people cant tell they have high blood pressure, but I think we are so in-tune that we sure can tell! I understand the faint thing, it's not like I am blacking out, but I feel like I could collapse. So to be safe I sit and it makes me so nervous, what the heck? I havent had a tilt for a year and on my tilt my BP mostly dropped to 60/40 after about 4 minutes. I really like to think I am getting better, maybe?? : )
  19. Not sure if this has been discussed before... I know i get symptoms from low blood pressure, but does anyone get symptoms fro high blood pressure, like something over 120/80? Can you get tachycardia from high BP? Granted I was flying yesterday, an early morning, and two flights, but not too long. I noticed after my layover after I had layed down a chilled for a bit, I felt off after. I had one some tight compressions stockings and then took my second midodrine dose. I felt like I just wanted to sit on the floor and didn't know if I was lightheaded or just jazzed up from a higher BP. I also had bad tachycardia, which in turn sets of my anxiety. I took my blood pressure when I got to my car at the end of the trip and it was high for me 124/98. So I took my stockings off.
  20. I would love answers on all of these things, I feel a lot of those too. High blood pressure makes me feel worse too, but how do I know it's high or is it getting low? : ) I struggle with dizziness too and midi fine can cause that. I have been on it for almost 3 years.
  21. I have the same problem. Sometimes someone is really good and they got it, but usually they get a vein and nothing comes out. One even told it felt like I had scare tissue in there-which made me think of my glucose tolerance test where they poked me more time then I could count! After the poking i now just ask to lay down in the chair. Usually they have to go get someone else to try. Those butterfly needles always worked but I have heard they aren't using those anymore for some reason.
  22. Great article Maiysa, going to share with some people
  23. Thanks for the replies. I know it wasn't the caffeine because I am fine with coffee. I have read aom disturbing things about aspartame and will not be choosing those drinks again! My chiropractor said I could try diet rite because it doesn't have aspartame to see if it's all artificial sweeteners I have a sensitivity to, or just aspartame. She also mentioned a stewardess who told her that pilots are advised to not drink it do due possible neurological effects and the potential of the toxicity of diet sodas due to changing temperatures and the chemical reactions that can occur, plus carbonated drinks can dehydrate you. Interesting! I could have killed for a water about an hour after lunch! Also, anyone she sees with migraines, she tells to remove all artificial sweeteners to see if there will be an improvement.
  24. I felt horrible yesterday and thought it could just be me or that I overdid it or it was just a bad day, but I have been thinking about what I ate that day. I had quite a bit of diet coke because we were at a restaurant and they just kept filling it up so I drank more than I should have. I have also noticed after drinking diet pepsi I get some weird feelings in my chest and kind of feel ill but have always attributed it to just me being "weird". Anyone else have these reactions?? I would be really interested to hear your thoughts and experiences! I eat a mostly healthy diet with minimal processed foods, so I am thinking the diet soda is like poison to me.
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