Bigskyfam

I haven't gotton one since I got sick... Personal reasons. In our past dinet newsletters, dr raj addresses this question. I'll try to find it

I'm in the process of investigating mcas

Prior to pots I've never had reaction to much

Now, meds, food, perfumes/pollen

I have a script for a h1h2 blocker but haven't started yet. Waiting on lab results. My histamine plasma level was a bit higher than norm. I've worn glasses for years.. So no advice on contacts.

Processed foods/ leftovers hear tell are the worst for histamine issues. I've already given up caffeine... If chocolate is on the chopping block I will be sad. Keep us posted

Mine are cracked have vertical ridges and are thin

Nail bed color pale at times

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone.

Cheyenne

Alma

sjones2079

Faye

Although I've only been here for two years, I've learned a lot, not only about my condition but of the determination, caring and knowledgable nature of this community. Support beyond belief!

This forum serves folks from around the world in different time zones. It's great knowing I'm not the only one awake when my family is sleeping and I can't. I'm sure by evening you will see quite a few comments under this post with people saying hello.

In the meantime if you have any questions let us know. Visit our DINET page and Facebook page as well.

Bigskyfam

My head is heavy when the weather is bad, I've slept too long. It was constantly an issue until I put my bed on a tilt for 18 months. I've been sleeping evenly for 6 mos now with a bit of pillow propping

My norm laying is in 60s, sitting 80s standing 100

Unless I'm flaring then add 30+ points to each category

I just saw ent for allergy panel. Since pots struck I've had odd reactions to food, environment and fibers. Keep ya posted. Good advice on the thread!

Agreed with ms Sarah! Hang in there

Breathe. You are doing well. You've got a few tools in your toolbox. Fluids salt exercise. I understand about the insecurity of the future. I have to remind myself to get through the day. You've got a good gameplan. That says a lot. Weddings and the like are stressful to begin with. Do what you can do. My fav analogy is you've got to put your oxygen mask on first then help others put theirs on... I remember this from the days I flew on an airplane. The thought of flying now... Not a happy one. Hang in there

Vertigo. Ugh. I get the sensation lately like when I stop moving it feels like I'm still going. No explanation. I hit my reset button and rest and hydrate and wait it out. I've had head MRI and ct so that makes me feel a bit better about vertigo

I get goosebumps every so often with no rhyme nor reason. No explanation for ya. Sorry

Hang in there

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone.

AliceP

viscy

Roos

Triocd

Poirot

Although I've only been here for two years, I've learned a lot, not only about my condition but of the determination, caring and knowledgable nature of this community. Support beyond belief!

This forum serves folks from around the world in different time zones. It's great knowing I'm not the only one awake when my family is sleeping and I can't. I'm sure by evening you will see quite a few comments under this post with people saying hello.

In the meantime if you have any questions let us know. Visit our DINET page and Facebook page as well.

Bigskyfam

I had a flare that started immediately after a yoga pose with my head backwards and a block behind my back. In pt I did ok as long as I didn't lay down. I saved those stretches for right before bed at home. Trial and error I guess like everything else with the life of dysautonomia

The only thing I could add at the moment is the bed elevation. We have a queen sz log bed. We used a 6by6 I believe railroad tie. Worked perfect.

Yikes. I'll be good and tired. Hope to not have syncope while there :/

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone. Brain fog is high today.

Brooke

Juling

elphabalover101

always.tired

PDXsays

Mabelsmom

eholliday77

mary73

breaker

dm866

jared

chess5

Rge11

Although I've only been here for two years, I've learned a lot, not only about my condition but of the determination, caring and knowledgable nature of this community. Support beyond belief!

This forum serves folks from around the world in different time zones. It's great knowing I'm not the only one awake when my family is sleeping and I can't. I'm sure by evening you will see quite a few comments under this post with people saying hello.

In the meantime if you have any questions let us know. Visit our DINET page and Facebook page as well.

Bigskyfam

I have one scheduled. Anyone with experiences?

It's in a few hours. Here safely.

Appt this week

Prayers and good vibes please

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone. Brain fog is high today.

Grace50lee

MnM

mollyjayyne

Firstyouleap

hopeforthecure

shannongray0

SaraStevStel

sleepyme

Starburst0128

dniestroy

Although I've only been here for two years, I've learned a lot, not only about my condition but of the determination, caring and knowledgable nature of this community. Support beyond belief!

This forum serves folks from around the world in different time zones. It's great knowing I'm not the only one awake when my family is sleeping and I can't. I'm sure by evening you will see quite a few comments under this post with people saying hello.

In the meantime if you have any questions let us know. Visit our DINET page and Facebook page as well.

Bigskyfam

How'd your visits go?

I still left the rheum office with the dx of hypermobility with possibility of eds type 3

With hypermobile joints except back, swelling and joint pain, mild slips of joints, easy bruising, pots and aortic root dilation

Ahhh everyday we are educating. I found my voice with this illness. I've always been a type a but I second guessed myself. Not so much anymore. I've walked into rheum for my eds type 3 dx... Based on clinical not lab. They've left the room before and have come back stating the same thing I just said to them. Patience perseverance and planning,... Start your folder of knowledge. Share when you need to.

Welcome to camp wanna new nervous system.

Sending thoughts your way

I know I've been into er for low hr. 50s sitting up feeling like junk... Er staff confused... Not sure what to do when it's low but doc says..hey you're not tachy

Isn't that great? Um yeah.sure doc. I find that same feeling after iv fluids as well... Where you tell your body this is good for us don't freak out. Normally I have a better few days 24 hours post fluids.

Anybody????