Yolaclover

I have been feeling so much better lately despite the blistering heat here in nyc. I'm not sure if it is the florinef, the lowering of the zoloft, the gluten free, not working at my job, but that combo seems to be great, my lightheadedness has decreased dramatically. I still have some migrating pain between my head and tailbone. I still wake up feeling like I was hit by a small car, but I feel pretty energetic and I have a lot more stamina than before. I hope this lasts and it's not just a "good week" though I will totally take a good week xoxoxoxoxo love you guys

I just had another test done iga again I think, don't know results yet! Will post when I know

Feels so much better she is being closely watched and that some answers could be found, hope yr all getting some rest and that K feels better.

I had a 4x above upper limit for anti-gliadin IgA, no biopsy yet

That miscommunication would make me so mad!!! To watch your child suffer like this and everyone sending her in every direction, I would be furious. Vent here. What else can you do? It sounds like Duke has some incredible doctors. I hope that K can get some relief and comfort soon, she has been through so much.

What a great dr! Pls keep us posted

I can miss one dose and feel ok

Same as Sarah4

My symptoms are just like yr daughter's as far as headaches go, I tried topomax but it made me pee too much. I think the headaches, the neck pain and pressure are all hallmarks of POTs and dysautonomia, I have had MRIs of everything and all are normal so what could be causing all of that intense pain? I feel like I always have a headache and neck pain, or they are just lurking about to strike. More research has to be done to shed some light on this illness.

I hope K is doing much, much better! I can't even imagine what you are feeling right now, I've got two children and when my son had surgery at 6 weeks old I was terrified. xoxoxox Can't wait for good news.

I usually get it with extreme head pain but fortunately it never lasts too long

I had that too while on this same medication! It did concern me, I told GP and neuro, I guess MRI ruled out anything serious.

I did not.

Is that like sick sinus node?

My cardio felt the zoloft was making me worse, I did not believe him but now, I am starting to think he might have been right.

Caffeine is my friend, i usually make a cup of strong coffee that I drink at home or I get some iced confection at Starbuck's.

Yes, this reminds me, I have my TDA and some other retirement thing from my old job, from 2002-2009 I worked for the NYC department of education. the money is just sitting there, lol! That was my dream job, well not that particular school, but I loved being a teacher for the board of ed!!!! I resigned in 2009 and I thought all of my problems would be over! Girl, they had just begun because like 6 weeks later I had my first symptom of POTS. I was so scared when this started, my doctor told me it was panic attacks....So it took 6 months to see a cardio and find out, no, it was not that! I did not work, kids stayed in daycare all day, I felt so bad, my husband was really mad that I wasn't working and my kids were in daycare, but i felt so sick! I even got a new job and was fired from it! lol! by September I was working again as a prek teacher, this job was nice but a lot of work, I resigned yesterday and will start new job teaching in a private school in Sept. It is just me with one or two students teaching Reading. 1-8th grade. I'm glad but I'll miss my old job, it was physically demanding but filled with joy

Hi friends! So, I saw my cardiologist, and I saw my POTs doc, Doctor Mark Pecker. My cardiologist, Ilya Kaplan, thinks I'm doing great with my hypotension, I am! My BP has been pretty good and I'm so glad, in fact, last night I woke up with a very unusual thing, heart a bit racy and 120/80-high for me! I was so nauseous! But i am noticing a good BP and I'm on lower zoloft (12.5) and my .1mg florinef. Dr. Kaplan would like me to stay at 12.5 for 2 months, so that brings me to Dr. Pecker... He agrees with Kaplan about 2 months on the zoloft at 12.5, they want me to taper slowly, I shall follow their orders! Dr. Pecker once again spent a good hour with me and he checked me, lie down, stand up, BP was good, not orthostatic at all (my body saves the bad stuff for when there are NO doctors in sight! lol!!!) He also did a very complete neuro check, more than my beloved Dr. Halpern! I had blood drawn and we'll see what happens. Dr. Halpern-my neuro, gave me the good news, my lumbar MRI was normal. great! Monday is a cervical MRI. Lately I'm suffering from very painful headaches, neck pain and lower back pain and stiffness. We are ruling out cervical syrinx. While I'd love an explanation for my symptoms that is one thing I'd rather NOT have. I'm nervous, the symptoms seem to be so much like me. In fact: Yesterday I felt so good, awesome. I got home, relaxed with my daughter and took her to grocery show, right before we went out I had a very sharp head pain by top of my head, so painful, then after five min. it felt like pins and needles in same spot, then I was hit by nausea and general malaise, somewhat shaky on my feet until this morning. It really, really worried me! (as I mentioned above my BP was higher last nt than it has been in a long time) I'm going overseas on 4 August for a month with my kiddos and I'm scared some sort of blood vessel will burst on the plane, I have 3 flights just to get there. So.....I'm sort of terrified but on the other hand, so, so excited to go to bulgaria with the kids. Now, I had a normal brain MRI, so I'm not sure why my head would be like that, it just felt like a blood vessel burst or something. Today, however, i feel good..... Okay, this was a very all-over-the-place post, sorry. Any reassurance? I'm very worried about the neuro type of stuff. Thank you!!!! xxxxxxx

Hi sweetie, Wow, it must feel very bad to get that letter but in a way it frees you. You loved being a nurse, you gave 20 years of your life. I wonder what is in store for you now? First, figuring out how to live your life with as few symptoms as possible. Maybe when you can manage your health better there could be a new kind of work? I recently resigned from my job (yesterday!). I got a new job that is much, much easier and more money! The hours are more flexible too. I bet you could do the same. I really believe in you, how is the weight doing? Any extra pounds? xxxxxxxxx

I have really become disconnected from my friends, I don't know how to relate to them now because I am often in so much pain and distracted by the crazy symptoms, especially because I nod my head a lot and then my head hurts and I get lightheaded, it just blows. I am being more proactive though and I do hope my friends will see more of me.

Please keep us posted, you did great! I saw my cardio today, I have a crush on him so I always become tongue tied in his majestic presence. Xo

I avoided taking midodrine again because the headaches were killing me, a shame because midodrine helped me a lot.

Lieze, you can do it!!!! You are so close to 90, and 92 for that matter. Keep it up! You are strong inside it's just so hard because you are still finding out what you are dealing with. I think when you have a firmer diagnosis and a more structured treatment plan things WILL come together. I could really relate to your post. It's like your reality is pretty much beyond your parent's comprehension. They just see you resting and think a certain way about you. Sometimes even when we want to push ourselves as hard as we can to do everything that is expected of us, we just can't, no matter how hard we try and how badly we want to fake it until we make it. Let's think about improving and remission. even if it is just a tiny speck on the horizon, an impossible idea really Let's see how we can try to make it our reality, or come as close as we can to functioning in a way that we can feel good about our selves and our lives. xxxxxxx

I took the topamax for just 2 days. The pins and needles have been ongoing and progressive

Sue, are you on any meds? You with Pots in the first years sounds like me now!