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lfreem02

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About lfreem02

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  1. Hi Altruism! I saw your post and wanted to check in. I was diagnosed with dysautonomia about five years ago, and have been off of the forums for a while. I have been busy with work and family. Found out last year that my daughter has joint hypermobility syndrome (possibly Ehlers Danlos Syndrome), and dysautonomia. Glad to hear you have been doing so well, or at least were. I am having a flare up myself, and am trying to figure out why and how to stop it. My neck has been hurting more each day along with the symptoms, so I am going to the Chiropractor tomorrow. I am hoping the two are related. I am also having blood and urine tests done. I have been extremely tired with this flare up, but am trying to keep up with my workout routine, and going to work. Driving has been a struggle. I stopped taking all of my medication in December, but know I may have to go back on some or all of them. Hope you are making progress!
  2. Where in Canada do you live? I am from Ontario, and have three brothers who still live there. I live in Atlanta now. So, I understand the frustration of the healthcare system there. I was diagnosed with Dysautonomia, not POTS. My body produces too much adrenaline, so I have the pounding heart even with taking a beta blocker. I can't eat/drink caffeine, which includes chocolate. I understand what you mean about sleeping being the best part of your life. When a lie down, my body can finally rest. I can sleep for eight hours at night, and still take a four hour nap the next day. The different doctors I started seeing three years ago all knew there was something going on with my autonomic nervous system, but I didn't fit neatly in the POTS diagnosis box, so I was given the incorrect medications. I had to go out of state to see a group that specializes in MVP and Dysautonomia. They finally got me on the right medications, and explained that this disorder can very greatly from person to person.
  3. I posted this response to another chat topic: It has taken three years, but I do a 30 minute boot camp class six days a week. Most of the people I work out with don’t know I have Dysautonomia. The ones who do know really don’t understand what it means. Since I started the class six months ago, I have fallen a few times, lost my balance many times, and struggle every time. I am known as the silent warrior, because I quietly push through and finish every class when others are visibly struggling. What keeps me pushing myself is that I don’t want to lose my battle with this disorder. Even if I have to deal with it for the rest of my life, I am determined to do it on my terms, and not miss out on life. I do find that I get a small window of feeling normal, which makes it worth it. I have hypersomnia in addition to fatigue, so I am really tired the rest of the day. There are days though that if I have a headache, or I am lightheaded because my heartrate is too low, exercise helps me feel better. I had to start out slow, but with time I am able to do more.
  4. It has taken three years, but I do a 30 minute boot camp class six days a week. Most of the people I work out with don’t know I have Dysautonomia. The ones who do know really don’t understand what it means. Since I started the class six months ago, I have fallen a few times, lost my balance many times, and struggle every time. I am known as the silent warrior, because I quietly push through and finish every class when others are visibly struggling. What keeps me pushing myself is that I don’t want to lose my battle with this disorder. Even if I have to deal with it for the rest of my life, I am determined to do it on my terms, and not miss out on life. I do find that I get a small window of feeling normal, which makes it worth it. I have hypersomnia in addition to fatigue, so I am really tired the rest of the day. There are days though that if I have a headache, or I am lightheaded because my heartrate is too low, exercise helps me feel better. I had to start out slow, but with time I am able to do more.
  5. Since I work full time, I have to be careful how much I do on the weekends. I have been doing too much the past few weekends, and have paid for it. Yesterday my doctor could tell I was exhausted by looking at me. I felt like I had the flu, and am dealing with headaches today. My iron is low and may have to start infusions, but I had blood work done yesterday to see what else might be going on. I have a sleep specialist who is trying to find the cause of my fatigue and hypersomnia, and a way to treat it.
  6. I went off of Zoloft last summer, but had to go back on it to get a recent flair under control. I still have symptoms, but not as bad.
  7. Interesting documentary and article, http://healthimpactnews.com/2015/tv2-denmark-documentary-on-hpv-vaccine-shows-lives-of-young-women-ruined/.
  8. I gained 35lbs on Lexapro, and it has been difficult to get it off. I switched to Zoloft, and stopped gaining weight, but couldn't lose any. I finally went off of the Zoloft, and lost 15lbs. My symptoms flared up, so I had to go back on Zoloft. I am eating a plant based diet, and stay away from cakes, cookies, basically anything with added sugar. I only drink water (with NUUN tablets), and try to eat as little processed foods as possible. I started going to a bootcamp gym, and do five 30 minute classes a week. I have only lost 2-3 lbs, but my close are looser. The good thing about loosing weight slowly is that you don't end up with loose skin and stretch marks. Medication has a big impact on your body. Don't give up. If you are eating right, and exercising, you are doing what is best for you.
  9. I live in the Atlanta area and it has been rainy for months. I have been having a flair and wonder if the weather is making things worse. I asked a Neurologist about the impact of weather, and he said it is something being looked at.
  10. Qigong helped me get some strength in my legs. I then started walking in the shallow end of the pool. I had to be careful, because I got dizzy at times. Eventually I could jog in the pool. Then I started walking in our neighborhood, and then worked up to jogging. After three years, I am able to do a 30 minute group boot camp class. Everyone can work at their own pace, which really helps.
  11. Welcome. I am Hyperadrenic, and have found that cutting all caffeine out of my diet has helped. Unfortunately it includes cutting out chocolate. I have been taking Atenolol, Klonopin, and Zoloft, which has also helped. I add salt liberally, but I have to be careful not to eat too much. I also drink three liters of water with NUUN All Day tablets every day. I exercise 30 minutes a day, five days a week. I do it at night so that I can take a shower and go to bed. After three years of dealing with it, I am not symptom free, but I can drive and work. It takes a lot of patients.
  12. Sorry I haven't responded before now. I am taking Atenolol (50mg), Clonazepam (.75mg), and Zoloft (25mg). I went off of the Zoloft, but am having a flare up of symptoms and had to slowly go back on. I am hyperadrenic, so I am guessing the adrenalin was the cause.
  13. Before I was diagnosed with Dysautonomia and started on the right medications, I used to have that happen. I remember being in a meeting, and the other person was being snippy, and I had tremors, pounding heart, and feeling that my adrenaline was out of control. I had to ride it out, and think long before I spoke.
  14. I have had low vitamin D, carnitine, and iron levels. I had a test done for TIBC and UIBC, and the more iron I take the higher the levels are.
  15. The Wellbutrin didn't help me. I had to stop taking it, because of the side effects. I am going to try going back on a carnitine and iron supplement to see it helps with my fatigue. Hope your symptoms are improving.
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