Yolaclover

Thanks potsyturvy (love that name!) i am not sure what to do. If my headaches and head pressure get worse I will not like .2. If my overall symptoms improve I will be very happy. Thanks for your input. I def have low bp and my heart rate rarelytops 90. Xo

My cardio would like to raise me from .1mg to .2mg, did a switch like this help you?

Thanks!!!!

I posted something similar on POTs recovery group. I had an amazing week, nothing, no symptoms, I started talking about it, being happy about it, thinking whatever I was doing worked and I was all better!!!! And then my symptoms came back, like they had never left. I get so upset, like, feeling as if I don't want to live any longer because it's all so uncertain.

Hugs, this too shall pass and we will feel better again. I know you will!!!!

xo

C

What a great plan and what a happy ending, please keep us posted on K's progress as we have grown to love her without even knowing her thanks to her amazing mom

I saW the film Under Our Skin a month ago, it is all about Lyme Disease. I was stunned by how these people had symptoms so like my own. It does take many months of antibiotics to heal, most drs are not Lyme literate and follow Lyme protocols that do not heal the patients, it is a huge mess.

This movie was great, I cried as the people talked about how dismissive their drs were and how many were labeled as depressed or crazy.

I was so scared when I was on midodrine about the high lying down BP, but my BP never went very high when I was on midodrine, even when I was lying down. When I saw cardio it was always 90/60. Then, one day, it just shot up to like 130/90 lol. I stopped taking it after that.

Thanks for the update! this is a great thread, nice to revisit it! Glad you are doing so well!!!

Are the headaches constant or do you feel good sometimes?

I wanted to share with you about a young (20's) woman I met on a different POTs support group. She was passing out a lot and had very low heart rate. She saw many, many Drs here in nyc. She was almsot going to get a pacemaker, she had an ablation right before (she was having very low HR like your Kayleigh) After the ablation her HR is now perfect! She feels much better.

Another thing, this young woman and I both had japanese hair straightening in the same salon. We both started having "POTs" 4 weeks after our hair process. Could be strange coincidence. But weird, right.

Good luck to Kayleigh! I am so glad you keep us up on how she is. So happy she's going home!

I just wish that Drs would try different things to help us. i can't help but feel that they shrug their shoulders, give us some midodrine, florinef and say they'll see us in 6 months.

My BPs are staying the same, 100s over 59, but last night, and yesterday for that matter, were bad. I did just get my period, but I'm so disappointed. I was walloped by head pressure last night. I'm so, so scared about my upcoming three flights to E. Europe. I'm scared the pressure will make my head pressure worse. Talk me down, pls!

xxooxoxox

I'm so sorry you were so uncomfortable, I am not sure why it happened but I hope it doesn't happen again!

Today I had head pressure, neck pain, lower back pain and stiffness ....period is coming...not a good day, hope it gets better tomorrow for me and everyone else, this heat isn't helping, a/c's are on but not doing much. Feel better!

Isn't it a sign of yeast overgrowth or something? How are your feet? Mine are not cute

I had this issue too and I can see mine is getting better, not quite clear yet but way better.

liizababy, I'm so glad to hear you are feeling so good! It does seem strange for me to feel so good in the summer. I have no more neck pain, no more back of head pain, no more head pressure. Lightheadedness, like....gone. BP before bed hovers around 100/59. It's too good to be true. I cooked dinner tonight, a good dinner!!! If i start feeling bad again I will be heartbroken. Must cope.

This allergist also tested for some MCAD stuff too. I could see the looks between him and his nurse, they thought I was SO full of it. Who knows, maybe he will see me and say there was nothing. But if it was normal he would have said by now, right?

Yes, he did 24hr urine, and some blood work, something to check about celiac. That's why he wants to meet. I'm hoping there will be more evidence of the celiac because that could explain a lot and may be why I'm feeling so much better!

My allergy Dr. wants to see me on Friday, wonder if it's "something"? I'm still feeling good!

I am SO happy for you!!! Keep us posted! What do you do? xo

I forgot to mention another thing i have been doing! A couple of weeks ago I started taking a tsp of children's benadryl at night before bed, I think Lieze suggested it to me or to someone else. Maybe that is helping.

Has she been tested for celiac? It could cause a person to have the gi symptoms, be malnourished, and thus a continually low body weight because they are not absorbing any nutrition even though they eat like a horse. It wouldn't hurt to be tested. We've had a number of people on this forum either diagnosed as celiac OR possible issues with gluten intolerance.

I wanted to ask the same thing! It could be a celiac crisis!!!!

Is there any special food that she likes that you could bring for her? Are you allowed? I have a 3year old girl and a five year old boy, I am really, really praying for K and your whole family. I feel your pain and frustration in your posts and please know we are here! xoxoxox

Maybe she is malnourished but it has nothing to do with the amount she eats or her weight. Maybe it something else. What else, I do not know. I do know that at 5'3"- (my height!) 108 would be very thin, however, it doesn't seem anorexia thin for a teenager! So strange that the doctors have fixated on that.

How is she holding up? What is her mood like? How are you getting through this?

xoxox hugs, you are a strong mom and you are doing great!

I have been gluten free for about 8 weeks, but I have cheated a couple of times. Usually I am quite strict.