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Everything posted by bellajulz

  1. Sorry you’re having a bit of a rough time, as far as the fludrocortisone I personally did not benefit from this med. I would suggest talking to your doctor and see if something would be more beneficial for you without the edgy feeling. Best of luck!
  2. I started ivabradine last month and it has helped dramatically with my HR and because of it I was able to taper off my BB that I’ve been on for the last 10years. Thought it does cause a lot of Nausea When not taken with food.
  3. Stress has a lot to do with our symptoms and how our body reacts.
  4. I’m so sorry you’re having such a tough time . I can only share my experience and it does get better. I’ve had pots for almost 10. Years and in my experience I go up and down or peaks and valleys. I like to think of it as remissions and relapses. I have been fully functional and independent for months at a time. I was initially bed bound for the first year but it’s about being kind and patient with yourself and knowing your limits and understanding it doesn’t have to be permanent, for with God all things are possible
  5. Thanks for the reply, yes it's typically 90 days after an episode. Im going Wednesday to to cardio in hopes he will fill out paperwork in my favor. Thansk for the link.
  6. I've recently had another relapse after dealing with pots for the last 8 years. My legs tend to feel weak and numb and heavy. It's the feeling of not being to hold myself up if I were to stand. It comes and goes, but definitely part of my pots. Hope this helps in some way.
  7. Anybody here ever go through a California DMV license review? I went to the ER and doc there reported me to DMV because I had fainted the day before. My regular docs are aware that I drive, and monitor me closely. Still, I am concerned about the review process. I've had pots for 8 years now and have never had an incident with driving.
  8. I believe you have to replace the whole thing. Try calling the place you get the oxygen from, they'll definitely know and can bring you replacements as well. hope that helps!
  9. I've never tried her diet, though I will say that I went gluten free for a year and did notice my pots and headache symptoms were a lot better. My energy was improved, I wasn't healed just better. So I would say that we poties tend to have sensitive systems so any change can alter us for better or worse. Good luck!
  10. Wanted to share with you all that my benefits were approved at my hearing yesterday!!! I know many of us have waited long periods of time after first submitting an application to disability. My wait was 2 years... I applied in april 2010 was denied, I appealed was denied again in July of 2011 appealed again and had been waiting for my hearing since then. I Got my hearing date in May of this year, had my hearing yesterday and was told by my attorney that the judges don't usually give their decision the same day that it would take 4-6 weeks... well when the hearing concluded I stood up and guess what???? I was about to faint had to lay on the floor of the hearing room. I fainted when paramedics tried to sit me up and had a fun trip to the hospital... but the point is that the judge told my attorney that given the circumstances she wanted to let me know that she was approving my case. The vocational expert had also testified that there were zero jobs I could perform with my conditon. Lastly with my age of 32 my attorney said it would be more difficult to prove disabilty, but apparently since my cardio and nuero backed me in their records it proved I was truly unable to work. I hope this info helps any of you who are still going through the process...As for me I am feeling so blessed its finally over and was approved! Anyone who is currently receiving benefits could you tell me how long before you received your first check? Feel free to ask anything I may have missed.
  11. Thanks all for the helpful suggestions!
  12. I am in need of a part time job, I have had pots for 3 1/2 years and had been on LTD from my former employer and am currently awaiting a hearing for state disability. My LTD ended in October and I had been appealing it, but I can no longer wait from a a financial standpoint. I need an income, I am a fainter so that worries me, but for those of you who do work what kind of employment do you do? Any suggestions would be greatly appreciated
  13. Hate to say it, but I have been in the same slump the last year. I have had pots going on 4 years and initially I tried and did everything that was suggested to me. Though now I think its more disappointing to still not be well, though I am going to try acupuncture when I can afford it. Someone on the facebook pots page said it made her 90% better, so I wanna give it a try.
  14. I called several companies and was denied since I am a fainter and with head injuries being a huge risk for death . Was very disappointing, but hopefully if your not a fainter you should have better luck.
  15. Happy to hear you were approved, this is encouraging as I am waiting for my hearing sometime this fall. How long before you think you'll start to receive payments? Potsgirl93, not sure what your situation is, but as far as my knowledge the attorney's do not charge anything up front to appeal disability its all based on whether the case is won or not so definately worth checking into,
  16. Hi All, I was denied by my LTD company for benefits and I have one more chance to appeal it. I was hoping for any suggestions and was also looking for a article that I could print out and send to the appeal board describing pots. So far I think the best I've found is what is listed on this site, I just want to be sure they understand just how severe pots can be. They have stated that they believe I can still work even though my docs have stated that I am a hazard and am permantely disabled. I was going to use an attorney, but so far they all want a cut in all my future benefits which I cant afford to do. Any suggestions would GREATLY be appreciated. A little history on me... I have had pots since October 2008, I'm a fainter and have recently figured out that I have hyper pots... :ike everyone else I have good days and bad days, though I do not faint as much since I can recognize before it's going to happen and can lay down since I'm home almost ALL of the time.. lol.. Thanks in advance!!!
  17. Happens to me, there have been several times where I actually fainted . I can not argue or get in a heated discussion without at least the feeling that I am going to pass out. I have passed out while scolding my kids, very scary for them
  18. Midodrine has been my life line .. without it I literally would be bed bound. I too get migraines, but I don't feel the med causes them or makes them worse. Hope you have a better experience if you decide to give it another shot!
  19. I would always get just like that, I now have home oxygen which helps me. Hope you feel better...
  20. What stopped you you from fainting?
  21. Thanks! And that is exactly how I feel, perfectly put.
  22. Hi all! Just wanted to share that I started a new med Imipramine back in March, which was given to me by my neuro who said it would help balance out my bp. Which fluctuated from high to low, also said it would help with daily headaches and with sleep problems. After now being on it for sometime along with my other meds I have had a HUGE improvement in my symptoms. I have more energy and am not as light headed or dizzy and headaches and sleep have improved. I have not fainted in sometime and am able to function alot better. To give you all an idea of what a big deal this is, I'll give you some history on me... I have had pots 2 1/2 years and had been bedbound for the first year, only able to sit or stand for about 20 mins or so at a time without fainting or feeling faint.With small improvements the following year though still needed much assistance to do most of my daily activities. I have been in and out of the hospital every few months since first getting sick like clock work. I havent' been in since Feb.of this year. I can now exercise and feel like I am half better which is a tremedous feat as you all know. I still take all my normal meds (midodrine,propanonal,florinef,xanax) and have to take it easy and monitor myself daily, but am so much more functional then I have ever been since being sick with pots. Hope this helps someone!!! I thank the Lord for this medicine and for helping me stay strong in my faith so that I can share my experience with POTS to help someone else...
  23. I just wanted to say that I am so sorry that your having such a tough time I have definitely been there... I will keep you in my prayers...
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