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abizzle229

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About abizzle229

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  • Birthday 02/27/1986

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  • Gender
    Female
  • Location
    Oak Creek, WI

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415 profile views
  1. I have had chronic insomnia as well. Always been a struggle for me. I have tried numerous sleep medicines, and Ambien and Remeron are the 2 that work for me. I like Remeron more, because with Ambien, my tolerance built up to fast and I did a lot weird stuff in my sleep (bad side effect!!!). With Remeron, I sleep nicely for 10 hours, and actually wake up feeling refreshed for once. Feels nice.
  2. This is the only drug I could tolerate and effectively lowered my resting HR from 100 down to 62. I love it. For me, it took about a month to notice an overall difference. I started having more stamina to do things, like working my full time job. I do take 7.5mg x2 per day. I have been on it since November.
  3. After multiple drug trials and not successful at eliminating symptoms even though my HR is controlled now, my parents are encouraging me to go to acupuncture. They heard it helps to regulate the autonomic nervous system. Have any of you tried it? I have never done it before or any eastern medicine. I do try to do yoga, stretching and meditate. Just don't know how acupuncture will feel or if it has helped with the symptoms at all.
  4. I try to go for atleast one walk per day, well if Mother Nature allows me too (I live in Wisconsin). Just to be out walking in the fresh air feels amazing, even if it is only 10 minutes or so.
  5. It is a good thing you are a member of this support group! I am sorry your family isn't more supportive. I agree that you do need to think of yourself first, and not push yourself to with the results only you feeling like crap. I would keep fighting for a diagnosis, because a HR shouldn't be high like that. This can be very scary, especially the unknown and little support. We are all here for you! I think with the concert, it was good you sat. My motto is it is better to play it safe than sorry. You would have hated to have passed out at the concert, and/or been miserable through it. You wouldn't have enjoyed yourself, but by sitting you were able to see the entire concert! I don't think there is anything wrong with that! Hang in there!!!
  6. The temperature cooling is definitely something neurologically going on in my opinion. If your temp is not being regulated, like dropping despite staying warm on the outside. That it is something with the brain (nervous system) going on. Either let your doctor know if you can't bring it up. The Florinef will alter your immune system, so maybe the cold screwed with you more. Maybe they could give you something for a short time to help get you over this hump. 34.8 is definitely on the low side and I would at least make them aware of it so it doesn't drop more.
  7. I also use Fitbit Charge HR. I use to monitor my HR, and I like that it graphs the trends for months. It shows me how I am doing overall. It also calculates my resting HR. It is pretty accurate when I checked it by checking my pulse manually and off of a monitor. I think it is worth the price.
  8. I think just having a place to vent our frustrations, to people who are going through the same thing helps. I break down crying to my mom all the time, which ends up making us both sit there crying. But nobody really knows what we are going through unless they actually have this. Hang in there. Venting helps get it off your chest and hopefully feel a little bit better that you aren't alone!
  9. Hello everyone!!! I am newer here, and feeling a bit lost with all of this. I have been dealing with these symptoms since May 2015. I had a negative tilt table, but I have a lot of the symptoms of dysautonomia. I had a full cardiac work up to find atrial tachycardia and an ablation in October 2015 where they did the AVNRT ablation. My EP didn't think I had POTS but had been tossed around a few times with my old EP. I was good for about 2 weeks. Then went into IST. My symptoms were always coinciding with my high heart rate. I was doing good finally on Ivabradine from mid Nov to 2nd week in January. Well then all of my symptoms came back but my heart rate is controlled. I am back on sick leave from my full time job (nurse). Which my HR told me by the end of the month if I don't come back, my manager could fire me if he wants too. All because I have used my 12 weeks of sick leave for the year in different stages of all this (I went 5 years of never calling in before all of this too!) I have a very hard time giving up my job because I unlike most people, I LOVE my job. It has been my dream to be an ICU nurse since I started school and was lucky to get the job right after I graduated. Every doctor I have been to thinks I might have it, but don't want to give me the full diagnosis. (so far GP, Cardiologist, EP and Neuro). I just saw my neurologist yesterday for the first time. He said my Neuro exam is normal but will continue to rule out any neuromusclar disorder. But he said if I want to continue to see if I have dysautonomia/POTS to go to our big teaching hospital but it could take 4-6 months to get an appointment there. In the past month, my symptoms are getting worse by the week. I just started having the beyond awful headaches, and gut wrenching nausea, dry heaves and stomach pain. I am on Ivabradine, Midodrine, and started on Prozac. I can't take calcium channel blockers or beta blockers and didn't tolerate fludrocortisone (stomach ulcer). How do I just wait all that time when it is only getting worse? Like what do I do in the mean time? Any recommendations? My GP keeps apologizing to me because he said all of this is out of his scope but he at least believes me. How long have you had to wait from the time your symptoms started to actually getting a diagnosis and treatment that started to work? Sorry for long post, just vented because I am a little frustrated and lost of what to do except wait and suffer.
  10. I am on Ivabradine (Corlanor) since middle of November. At the beginning of January I felt better than I ever had. I was able to work full-time, and work out on my days off. I still had some minor fatigue.
  11. I also heard supplements help like Vitamin B12 and Ribose, with energy!
  12. I was told to do light exercise everyday and make sure to stay well hydrated. That way you are still getting benefits of exercise, but you aren't pushing yourself into a "crash" by pushing too much! I am currently struggling with lack of energy and don't know how people do this everyday with "pushing through" the symptoms. I am also out of work as well and really want to go back but I am trying to find the strength to go back everyday.
  13. I found that it took me to find the right doctor who fully understood me. My first doctor, after not tolerating a few medications we tried, straight out told me, "I really don't know how to fix you or help you anymore. You will have good days and bad days. I will see you in 6 months!" I left devastated. But that only pushed me to go find ANOTHER doctor, who believes me. I work in healthcare, and it is all about finding the right doctor. Finding the right doctor who will help you and be patient with you, makes a world of a difference with treating any illness.. especially any dysautonomia!!
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