WyomingGal
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Starting On Zoloft (Setraline) Tomorrow....
WyomingGal replied to SeattleRain's topic in Dysautonomia Discussion
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. -
Klonopin Long Term Use - Anyone Else?
WyomingGal replied to imapumpkin's topic in Dysautonomia Discussion
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! -
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.
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Update On Health:i Am Well At Last!
WyomingGal replied to Elenapap11's topic in Dysautonomia Discussion
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! -
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.
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As A Child, Could You Swing On A Swingset?
WyomingGal replied to kayjay's topic in Dysautonomia Discussion
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 -
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?
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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.
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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!
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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.
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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.
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Florinef & Midodrine Combination
WyomingGal replied to PetuniasMom's topic in Dysautonomia Discussion
.1 mg florinef and midodrine (10mg, 5mg, 5mg) -
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!
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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
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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!