Yolaclover

Hopefully i will be seeing Dr. weimer soon, I'm just waiting for them to call with an appt. for me

Hi Rachel!! thank you Lieze, I can totally see from your posts that things seem a bit better for you and i'm so, so happy. That is so nice about your parents letting up a bit, do you think they understand how sick you truly are now? How are the kids?

Hi D

Yes, the gluten neuro connection is very interesting, when all of this started I was an extremely healthy person with low blood pressure (I never had any low BP symptoms though, even through 2 pregnancies). Then one day I had a bagel and a coffee at work and bam!!! Massive head pressure and presyncope. It was so scary. 6 Months later I was diagnosed with POTS (I was still eating gluten, more in fact because carbs and pasta were my fave food) and even on 3 X per day 10mg of midodrine my BP reached a staggering 90/60 (and that dropped way low when I stayed sedentary or slept. Florinef gave me some relief but I was unable to go tandem with the midodrine, BP got too high.

It was when I'd been diagnosed with POTs for about 16 months that I told my doctor, "you have to keep testing me because I still feel really bad, I need to know why I'm like this." He did more bloods and the celiac blood test was +, a strong +, so I was referred to Dr. Batash, NYU GI. His bloodwork once again showed an even stronger positive for celiac. I am waiting on the results of the biopsy, he said he got lots of samples.

I still suffer from that tightening or swelling of something in my head...my cerebellum? I wonder if what I ate had gluten, I'm still not being as diligent as I ought to when it comes to eating gluten free. I have given up so many foods sometimes I just don't want to check if I think something is safe and usually I'm wrong. I guess I'm just waiting for it to be official. My lightheadedness and head pressure, is that gluten ataxia? I totally have neuropathy, pins, needles, horrible pain in my feet sometimes. Like something is broken.

When i tried to stop the florinef my symptoms came back. My BP dropped, does that mean it's not celiac or just my body's reaction to stopping florinef? When someone eats gluten is the adverse effect immediate or does it take a certain amount of time?

Sorry so many Q

I do have a book about celiac, I guess it's not enough info

xo

C

Hi Lieze, I've been reading your posts, how are the kids and how are you? How is everything with your family and husband? I would love to know how you are.

xooxoox

C

thanks Naomi, always like to hear about NYC docs

Clove

I am O+

Hi friends, I was having some password issues and they have been resolved Really missed everyone, have kept updated by reading here but was unable to post. I returned home from Bulgaria on September 2nd and I started a new job! I was having some issues with florinef. I cut my .1mg dose to .50 or is it.050? that helped for August, but in September I started getting very, very painful headaches, they felt more like a head infection than a headache, I took all sorts of meds when I thought, why not cut the florinef again. Dr. said to try every other day but I could not take it! So I tried 1/4 of a pill in the am and pm. It has been working. I'm not 100% though the headaches are reduced drastically. I am now doing just that but I sometimes get very lightheaded, have lots of twitching muscles, some weird spells at night , pins and needles kinds of things all over my body and my personal favorite: head pressure and weird disturbing head and neck stiffness and pain, like I got beat in the back of the head by a baseball bat. love it!

at one point I was off of florinef for like, 5 days. I felt bad and my BP got low, 80's over 50's. It made me think, "what is going to happen to me, will I be sick for the rest of my life, do I really have POTs?" I have had a TTT but I never did the whole autonomic lab thing so I want to go somewhere in NYC area but not sure where. Julian Stewart is all about peds. NYU is all about familial dysautonomia. I have to do something though. There are so many tests here that people write about that I have never had!

I have also been dealing with my possible celiac disease, saw the GI and had another blood test positive for celiac, had an endoscopy 2 weeks ago. Waiting on results. I also have to have a blood test for genetic Celiac and a stool sample.

Would love some ideas of what to do next. Wanted to ask if anyone had been to the Columbia Pres. lab and if they do the full battery of tests. thanks guys!

While I was in bulgaria we had Ayrayan. It is just plain yogurt, mixed with ice cold water, you mix it hard, put salt in to taste, i added a ton of salt, people drink it in the summer to cool off!

Thank you Tinks!

This has happened to me, not frequently, but when it does it freaks me out, I have no idea what it is!

I have been off of zolft for about 6 weeks now, feeling great, my BPs have almost always been good, like 110/70 HR 75

Hi friends! I'm back from along trip to Bulgaria and Istanbul. Boy was I scared to even get on the plane! It was very nice though, the flights were uneventful, I had a wonderful time with my kids at a beach resort and then my husband came, we went to a wedding and then we went to Istanbul together. I was gone for a month! I had some difficult days, but some good days, mainly I struggled with head aches and head pressure, only a couple of days when I felt very POTsy.

I'm down to 1/2 a florinef per day, I am now on Gabapentium for my head aches and head pressure and lower back pain. I'm only on second day! So far so good. Miss you all tons!

xoxoxxoox

Btw, my head pressure had been gone for about a week,, finally after 4 months on florinef with head pressure. Today was just head pain and lightheaded, ESP when I turn my head

First day off was bad for me!! My head hurts and felt very lightheaded will have to keep taking every day, today was a difficult POTs day for me, how was your day?

Oh my sweetest sweet ! I second compression hose, I didn't. 't take my florinef yesterday and now I feel like crap too! I was actually finally feeling better but so, so much fatter

Every day you will feel better, hug!

I have a great childhood friend who I reconnected with on fb, she had POTs for 10 yrs and did very well with inderal, she is 100% better now and has been for about 3 yrs

I am having same issues, trying every other day too, starting now

I feel so much warmth and compassion for the disabled, elderly, I want to help people when I get better.

I love salt, love having a high salt diet.

I am a more patient mom.

I have become a better listener.

I am supposed to start pill soon but scared it will make me worse, this question got a lot of responses in support of birth control on the dysautonomia connection forum.

He thinks I need different ssri. He thinks zoloft increases my symptoms.

I have been on Zoloft for about a year, my cardio has me weaning off because he said it's making me worse. Is that true for anyone on here? TY!!!

That is wonderful lizababy!!!! Please tell me, what is your BP now with the meds when you are lying down? I have midodrine here, maybe I need a little.

xo

hAve fun at yoga!!!

So Lizababy, you are now on both midodrine and florinef? How is it? i found my BP got too high when I was on both and the headaches were intense!

Good to know! Thank you. I have this headache I get when I lie down, pressure and pain, feels like my hair is being pulled extremely hard!

Sometimes I just want to kidnap you and take you to dr. Afrin! You need a pro with these food allergies! I am actually being food allergy tested tomorrow, will post about how it goes. Big hugs Lieze, I know it has been a very hard week. How is your bp doing?

Xoxo