bellajulz

You and your family are in my prayers, I truly hope you are home soon back to feeling better.

That's interesting... If you can let me know if her doc finds there to be some kind of link... THanks for sharing

Thanks for your response... I advised my Neuro of my concerns and that I was doing pretty good and was hestitant about the testing and the effect it could have on me. He advised that there was no rush (this was last month) but, that the tests could provide what part of my nerveous system wasn't working properly and would help with a better treatment plan overall. I have been on the same meds/dose for the last year, I just think that the "up" period is more of a coincidence then anything. I just don't want lose it. The only test I have had in the past aside for labs and CT/Mri's is TTT. This would be my 3rd time canceling at Mayo, I'm such a chicken.. I just know if I faint, it will definately set me back a few weeks... I am so reliant on my meds.

I am in need of some opionions... I have suffered from Pots for about 15 months. I have been completely bed bound, to house bound to now partially functional as a normal person.. lol.. I am back to driving and can be out for about 2 hours or so at a time. I haven't fainted since November and consider myself on an "up" moment, since my health has been so up and down. I would say this is the best I have been since I first got sick. I am to go to Mayo clinic (Scottsdale, AZ) for some autonomic testing, which I will have to be off my meds for 24 hrs. and I believe another TTT. My new Neuro wants to see where I'm at see what options we can try so that I can be "fully" functional after new treatment. Question... Should I chance my new found "up" period for tests, when I am doing so well? I have put the testing off now for 2 months. I am pretty confident I will faint w/o my meds and usually a fainting episode sets me back about 2 weeks or so.. I also usually stop breathing when I faint, which of course is not good. My family thinks I should wait, I am torn. My LTD is up for renewal and I don't want docs or case worker to think I'm not intrested in treatment... Please help as I am scheduled to go this Thursday....

Just wanted to see if there was a link between Pots patients and those who suffer with Iritis. If you have ever had Iritis let me know. I'm told by docs that it's a completely separate issue, but I still feel there is some link as I have both. Thanks for any input!

I just wanted to add that lying down doesn't always help me, I have fainted numerous times while laying down in different positions. My docs told me it was "impossible" for me to faint laying down, which is definatley has not been the case for me. I think everyone's body is different and reacts in its own way... Hope you get to feeling better!

Just wanted to add that I too on a bad day feel very dizzy even while lying down, and have fainted many times in a sitting or flat position. Though most docs have told me it shouldn't happen, once I'm in an "episode", it doesn't matter if I'm standing or laying down.

I do not really know much about the ivig, just that all my other tests came back negative as to why I have pots so my new nuero believes it's worth a try... other then that I dont have any other basis for it... I will post more after I have it...

Hi, Macks Mom, My only diagnosis at this point is POTS, so the IVIG is a last resort at helping me function more normally. I was told my day would consist of 6-8 hrs of treatment for 2 days as outpatient then in my home after that for 2 days every month for 6 months of it and go from there. Thanks and good luck to you too!!! AZ Girl, I had been meaning to update you on my doc visit with Dr. levine, he was very knowledgeable and after all my labs and cmg came back normal he ordered up the IVIG, he believes its worth a shot. He also got my insurance to approve the mayo clinic for autonomic workup, which had been previously denied. I will keep you posted on anything new. How are you?

I'm scheduled to do IVIG this next monday and Tuesday, it's basically a last resort to help me with my pots. Has anyone had any luck with this or offer any information,advice or experience with IVIG. Anything will help as I am a bit scared... Thanks in advance..

I'm scheduled to do IVIG this next monday and Tuesday, it's basically a last resort to help me with my pots. Has anyone had any luck with this or offer any information,advice or experience with IVIG. Anything will help as I am a bit scared... Thanks in advance..

This post as do most of em' do , really hit home with me also. I just received a letter yesterday advising of my having to resign from my job due to my health. It was really sad for me, all this year my goal was to get well enough to get back to work and now I have no "work" to get back to. I am not sure what lays ahead for any of us, but I do believe that all things happen for a reason though we don't always understand. I pray that you will have success in getting pregnant, but if not I am sure that something will come before you and raise your spirits. What works for me is to do my best in staying strong and I guess I have convinced myself that this is a temporary illness for me, so even if it isn't, denial helps to get me through each day even when I feel I may not be able to ...

I agree with everyone here... I went through a similar situation.. you need to get an attorney if you don't have one and you need to get statements from docs stating that you are fully capable of caring for your children and you need to stay strong and fight... don't give up, have your cry and then do what ever you can do on your end... I know this hurts and is so devastating, my heart is with you. My custody battle is by far the worst thing I have ever been through and I wasn't even sick when I had to go through it , Please take care of yourself. One of the things that I had to prove was documentation from teachers/coaches, anybody really , that I was primary caregiver for the children, that I had attended docs appts. with them, conferences. That is how I was was able to maintain primary custody of my children. My custody battle was a bad one, as I'm sure they all are, let me know if I can help more. your children and you are in my prayers.

Don't feel bad, we all have our limitations. I was home bound for the last 10 months, without being able to make it out my doors w/o fainting. Though now I am able to be out more, walking for long distances or shopping w/o my wheelchair is out of the question... I just think our bodies may be on their own time tables and we can do what we can when we are able ... dont try to push yourself or feel bad... just do what your able to, remember stress holds us all back too, so the best thing that worked for me was to be creative in entertaining myself while I wasn't able to leave my home. Happy thoughts!

Just wanted to say that I have fainted many times while lying in bed... what seems to help is to elevate my feet with my head flat. I have oxygen at home that has made a world of difference for me. I have had paramedics called many times before and it would appear that as soon as they were on scene and giving me their oxygen my fainting or sever lightheadness would slowly go away. If it gets too bad, do not hesistate to call 9-1-1, even if he doesnt get transported to a hospital they can check him out... I really hope he is feeling better, perhaps going back to his original dose of meds would prevent this from happening. I know it's a very scary thing, and probably even more watching it happen to your baby. YOur both in my prayers....

YAY!!!!!!!!!!!!! Thank God, hope you two are able to celebrate!

Well I am very sorry to hear that you are having a "down period", I as most of us can definatley relate... I hope you feel better soon and hope you at least have understanding docs. I had a doc wanna drop me as a patient due to a few cancellations..... V

I hope you are feeling better today, I too have fainted many times while sitting and even while laying in bed. The thing that has helped me is having my legs elevated anywhere I go. Whenever I go to the movies I always have my feet up the entire time on the seat in front of me, as I too have fainted in the theater before. When I go to resturants or anywhere in public I keep my legs up on another chair, even if I feel good. Hope this helps!

Though it may not seem to so now, but this to shall pass and will make you a better person for yourself and your children. I pray for a peaceful home for you and your 3 little ones and that the Lord will bless you with a patient and knowledgeable laywer. You may not feel it now, but you will get through this. Knowledge is power!

Yay! Thank God!!! I hope he has a speedy recovery and that you are feeling well also!

Just a thought... I am starting to belive that the two are related.. Before I got sick I never had any direct neck pain, the day I fainted for the first time I had a strange neck ache all day. I mentioned this to the docs though no one has really thought much of it. I believe there is something that triggers the neck pain that is pOTS related.

I have been on Midodrine for the last 7 months and I take 40 mg a day after being on 70mg initially... I've tappered my dose down because I felt it was making more tired then I already was. I could not function without this medcation, I am a fainter and this med was the only thing that allowed me to be upright starting at short periods of time such as 20 - 30 mins. I am now up to staying up to about 2 hours on a good day. Hope this helps...

The last two weeks have been awesome for me! I was able to drive for the first time and even go to the store and do my own grocery shopping! ( I shopped for about 30 mins) I have not done these things since I first got sick in Oct. 08'. I have been transported by ambulance about 7 times when I have really bad fainting episodes, I'll stop breathing and will continue to faint over and over even while laying down. My mom noticed that by the time I arrive to the hospital I'm usually much better, she felt it was from the oxygen given by paramedics. So we asked my cardio if he could prescribe oxygen for home , he said no that there was no need. After a follow-up with my nuero, he was willing to do whatever helped and prescribed it for me. Since I have had the oxygen at home, I use it everytime I am feeling faint and usually come right out of my 'episode'. I really do feel that this has helped! Thanks to my mom's great observation, of course there is no research on how the oxygen helps with POTS, but for me personally I feel much better with it! Also, I only use it on average once a day for about 20 - 30 minutes at a time. I also have altered my meds to a dose that seems to also be working!

I do the same, my cardio had me on 70 mg. of midodrine and I have slowly weaned myself to 40 mg. my doc has advised me to do what feels comfortable, as he is still learning about pots himself. I have also done the same with my beta blocker, due to be over tired. This has worked for me, though I have at times had to up back up to original doses due to my symptoms getting worse. It seems to work for me, but I have learned to do the weaning or adding slowly. Hope you find what works for you!

Thank you for all your replies as I do agree and with most of the advice given. I will try to be more patient and would like to add that I have been very appreciative with my family including giving monetary repayment in return for the help since I haven't been able to do more. I never ever leave my home w/o a cell and always tell someone where I am and give updates as to how I am doing every 10 to 15mins by text msg. I have never gone swimming alone, was just hanging out at the resort style pool that I live by. I never leave the home when I have the slightest of symptoms and have come to learn and understand my body. I share this so that it can be seen that I am not just throwing a fit, but am truly having some difficult issues that I am struggling with. Though your opinions are very helpful and I will continue to try to be more patient and understanding.