CallieAndToby

Yes I have passed out outside. I was on the couch and a family member called me out to help him with something, I was just standing there and my hearing left first and then everything went black. I woke up on the grass with my dog and him him over me asking if I was okay. I guess if you're feeling weird I would just lay down on the grass, that's what I do now or the ground, or try sitting down first. I have a chair now on my back porch that is totally flat and I lay down on it supine. Sorry it happened can't really explain why. 

19 hours ago, MikeO said:

so do you do a log similar to this? I do spot check my bp's before i eat and about 45 min - ish afterwords and it does show a hypotensive drop in blood pressure which makes me feel ill. I do know carbs like pasta is harder on me for sure.

  

I've never done a diary for dysautonomia but when I did it for Interstitial Cystitis which is a really bad chronic bladder disease, I just kept track of what bothered me in a diary book that was given to me. It looks like you're doing a pretty extensive job. I looked at foods suggested by some dysautonomia websites and all the things they recommended like tomato soup would totally burn and flare my bladder so..... it's been tough for me figuring this all out. 

2 hours ago, MikeO said:

Well i kinda looked at this from a perspective if you get stung by a bee you will avoid it next time you see one. I may try a diary just cause it makes sense and i can bring it into a Dr's visit if needed.

It's just something they medically do for IC. You start to form patterns. Like I can't have potassium or citric acid so any electrolyte drinks are out for me. 

Have y'all done a food diary? Seems basic but when I was first diagnosed with Interstitial Cystitis and for any new patient, the first thing is to keep a food diary to see what bothers the bladder. It was a ton of things for me and I've just learned after decades what I can't eat and what I can eat. 

3 hours ago, MikeO said:

@CallieAndToby22 @Pistol Now you two have me Hungry. Any particular yogurt better than other? I did try some Greek stuff seemed like dy sour cream. 

I don't like greek yogurt, it's really heavy and barely sweet. We can't put brands or anything on here. 

22 minutes ago, MarcoS108 said:

It has helped with your POTS because it is helping clear out dopamine from your basal ganglia which are a common cause of POTS as well as OCD and a hyperactive mind. This is one of my drivers of my POTS as well as cerebellar damage. Vitamin B2, riboflavin, is also very important for the methylation cycle so taking that may help a lot. A fair warning your pee will get very yellow after you take it.

Thanks I need to start taking it again. I did take with B12 but not the riboflavin. It helped with OCD as well. 

2 hours ago, Pistol said:

I do not tolerate a lot of food at once so when I get hungry I like to "fill" up with things like yoghurt or an egg - they make me feel like I just got off the thanksgiving table but without all the negative side effects!

Yogurts are yummy too. 

14 hours ago, MarcoS108 said:

@Haidar Badrando you also have anxiety as well? Muscle twitches, anxiety, and OCD like tendencies are usually a good indicator of basal ganglia dysfunction. They are a group of neurons in the brain that can influence your autonomic‘s and are one of my causes of POTS (as well as cerebellar damage). It may be of use if you find someone who is a functional neurologist or a functional medicine practitioner who has studied from the Kharrazian Institute.

May I send you private message to ask questions? I have severe OCD but I don't want to hijack this thread. So sorry for those getting sick post covid..

On 8/7/2021 at 4:44 PM, MikeO said:

@dancer65I will give yogurt a try. Thanks!

I eat yogurts you can get light ones too and it's quick and easy, not heavy and helps hunger and probiotics. I have cheese sticks, nuts. Tonight I had a black bean burger without any bread and half sweet potato which is my favorite. I love fruit but it but burns my bladder though oddly I can handle a mango every now and then. I guess it's trial and error. But I second yogurts. 

2 hours ago, dancer65 said:

Thanks for posting the link ! 

Thanks for alerting me. I'll be very interested in Stanford study results. 

Heres the link and it helps w insomnia too. https://www.dailymail.co.uk/health/article-9877765/The-cooling-bracelet-ease-dizziness-insomnia.html

15 hours ago, dancer65 said:

A trial is going ahead at Stanford for a cooling bracelet to try help regulate body temperature . 
if you want to read about it search Daily Mail cooling bracelet , POTS was mentioned , sounds interesting. 
sorry don’t know how to copy link on my phone ! 

That sounds really neat. 

5 minutes ago, Pistol said:

Oh, come on @MikeO! It can't be that bad! I LOVE plants. I have an Orchid I got about 7 years back from my husband for valentines day and it now has 48 blooms on it! And it blooms continously - as the old ones die off new ones are forming. I also love herbs, have several flower gardens, a vegetable garden, an Aloe plant, a Fig tree and a Rosemary bush that made it to 14 years old ( rest in peace, she died this spring 😢). And tons of house plants. I even grew an apple tree from seed! Plants are just like animals and humans - they want to be given what they need and then they will give you all they got!

Lol. Sounds like you have green thumb though. I just prefer to take pictures of the flowers and plants.

No wrong answer here! 

So I've been listening to Modest Mouse's new album. And Sarah jarosz' new album which won best Americana. Last night I was angry and listening to the emo band Emery. 

This is a calming song by Sara, she plays multiple instruments since she was a kid: 

7 hours ago, MikeO said:

@CallieAndToby22Nice photos made my morning.

Before i started getting really sick i was a bit of a shutterbug as well.

 

I did some freelance photography, I wanted to finish my degree in photography online..... then cancer treatment. When I was young and much healthier I was a working/gigging musician but got really sick. I miss art because there is nothing as therapeutic. Even all my time spent in the hospitals I was always so happy with the music therapists, art therapists, and once I got a plant therapist. Those things to me are just important as the doctors in hospital and nursing home settings. My grandmother was in a nursing home for awhile and when things were getting rough I asked for a music therapist and they had someone permanently working there and it was helpful for my grandmother and family. That's my little soap box rant about the arts! Gives me an idea about a new thread. 

30 minutes ago, Aurora said:

Iam so sorry. She was such a cutie! ❣️☹️

Thanks. 

1 hour ago, MTRJ75 said:

Okay, I've heard of these before, but only in the setting of some kind of doctor's office. I'm surprised businesses are allowed to do this privately with the assumption that there are certain risks  of doing it too often. 

You can only do it a certain amount of times a week, they won't let you come in as many times. And the woman administering it was a Nurse Practitioner. Most people are doing it for vitamins and stupid stuff that would make me ill but luckily I can do saline. I have no choice because my new PCP flipped out when I mentioned saline iv's and I still don't have a dysautonomia doctor. I had somebody good for like 6 months but he had severe HPOTS himself and had to retire. 

33 minutes ago, Pistol said:

@CallieAndToby22 - These are all good but i find the one of the house with the fire extinguisher and the painted door exceptional! Very artistic capture!

Thanks so much. That one was featured on a photography website much to my surprise! I'm glad you like it. 

7 minutes ago, MTRJ75 said:

I forgot to ask: What is a "hydration place"? 

Is it okay if I send a private message b/c I don't think I can put a business name? If not there are these private places popping up that will do different infusions like vitamins but they also do saline and lactated ringers. I saw one by accident with my mom where we're moving and we have used it every time we've gone back. 

It's really hard to do b/c I can't stand or sit for very long but I will sit somewhere and take photos then I can edit them from bed. The dessert one isn't edited yet. 

I live in the woods too and see many deer. Unfortunately also bears, snakes, foxes, coyotes.............. My dog is 13 now he's a big boy but when he was about a year old I was on a dock fishing with a friend and he started growling and snarling and we looked at him so confused then we looked up and a big black bear was walking into my yard; so my dog took off and chased the bear away. All hail the mighty Rhodesian ridgeback, he's awesome. 

On 8/8/2021 at 6:06 AM, Pistol said:

@MikeO - I have to protect my garden and fruit tress from these rascals! We live in the woods and the deer literally grow up in my back yard, 2 years ago we found a tiny fawn lying against our foundation! We left it alone but now it thinks our land is free game, and it ( and its family ) ate my beans and tomatoes 2 years in a row! This year we improved our fencing around the vegetable garden and pretty much built a fort around our apple trees, but they still managed to emaciate my azalea bush in the spring! 

My late dog Callie used to chase the deer away.  

I think they were eating my grandpa's veggies though. I know the squirrels were eating his apples. So it is. Edit: These threads are very nice b/c I can think about better times and not my health. 

On 8/8/2021 at 7:48 AM, MikeO said:

Hopefully soon  in the meantime lunch is served.....

I think this has caught my attention the most. 

On 5/26/2021 at 7:11 AM, Ashc said:

Well there's also people who hates the beach, the heat, the water... and not to mention the sticky sand. I know a person who hates going to the beach.

Well that's why you get into the water when it's hot then it feels amazing and refreshing. There's such a freedom to swimming and I think it's legit the best exercise. I think my favorite sport in the Olympics now is surfing, both my cousins are surfers and I was watching them last month, even some dogs on surf boards lol, wish I had learned but I have no idea how to balance on a board on top of a wave. 

Very pretty looks like a gorgeous lake. I'm born in raised in Florida but I've lived in Guam and Belize as well I love the water and some say I'm part mermaid (when I could swim). For me to find peace and to get away and to feel a closeness to God I have to get to the ocean or some large body of water. Here are some photos I took about a month ago at the beach. 

On 8/9/2021 at 11:53 PM, sitcedar said:

So sad.. sorry for you loss.

Thanks. Just reminding myself she had a good life. We rescued her from a pretty rough situation but I think in return they rescue us as well.