houswoea

that's good to know, it's the same here. Tired and unsteady. I forget I can't just get random shots like a normal person... oh well

Hey all. Got a cortisone shot in my shoulder. Really whacking out my system. Any ideas why? I am trying to figure out which meds to go up on or if I should just wait it out. Thanks all.

I used to have major hair loss too, but I'm convinced it was stress-related.

Guess what! It's my two year diagnosis anniversary. This day I was officially diagnosed with POTS two years ago. Let me tell ya, the second year was easier than the fist.

As my roommates said, "...yay?"

I used to get that... like such extreme chest pain that I dreamed about ripping my heart of with my hands. I still have no idea what this was. Was super allergic to pain pills, I don't recommend trying that for the chest pain. Now on gabapentin. It seemingly helps. I only have really bad pains maybe once a month now.

well, I was 130 when this all started. For a while I stayed about the same. Then after I got really sick I was down to 100 pounds and it was really hard on my body. After getting some things in order and after my pots has toned down, I'm back up to 120, which is pretty much good enough for me!

This might be a long shot, but it was the digestive problems causing my flank pain. Things were pressing on my nerves, if you catch my drift. It happens every time I have that problem. Whe that problem is better, my flank pain is gone!

Me! I was really, really struggling before I started taking it. Now I'm walkin all around and doing stuff and am conscious! It's great! I'm all for this one. But don't forget to eat, because good gracious, it's ugly if you don't.

It worked! I just upped the miralax and magnesium and things are going again. Woopwoop! Thanks guys!

Yes, I was pumped about the mestinon speeding things up, but now it's not enough. I don't know if miralax works for my body, I've tried it often and it doesn't seem to work. I'm thinking I might have some thyroid imbalance problems, which is pretty normal for women.

It's getting to be like weeks now before anything happens at a time, and it just isn't supposed to be that way

I hate this topic. I never talk about it with doctors because it's embarrassing... but it's getting out of hand. I'm taking mestinon which really helped for a bit, but not much anymore. I'm taking magnesium supplements, which helped for a while, but not anymore. And I'm taking over the counter stuff, but that doesn't help, and I'm wondering if anyone's had any luck with anything.

Hey! I am also living in MN, but getting counseling was the best decision I made in regards to my healthcare. It made such a difference in my life, I can't even tell you. I also saw a psychologist for a while, and that was good too, but I liked the separation from the medical world I got with the counseling. The first one I had was free from a church, and she was so wonderful. And the second one I had was from a counseling center, and she was also so great!!

Seriously. Cheerleaders for your soul.

Liz

I'm in college and I'm registered for the services for students with disabilities. My most important accommodation was the ability to skip classes for health reasons (Like I couldn't actually walk to class or something similar) and not be penalized. That included attendance grades and assignment deadlines.

There were some other ones I qualified to receive, but I don't end up using them very often, such as transportation services and extended test times. I got to leave class without being excused if I needed to do so, but I only used it once or twice.

Every teacher so far has been incredibly understanding and I've never had any trouble getting what I need to succeed. I've found that most people are sympathetic if you tell them ahead of time what needs to happen.

I figure you're the ones to ask... has anyone had any surgeries on their shoulders before? How did that affect your condition? Like did it make it worse, or is PT really the best idea, or maybe it was worth it?

I know you guys are all experts on this stuff now and probably know what you're talking about, but was it autonomic neuropathy in general or related to dysautonomia? Because if it's a general thing, there are lots of really old people or people with diabetes who have autonomic neuropathy and they could account for the 27%

Hi there,

my dad works for a company called medtronic and they make these too. He was telling me they work really well, but usually go in people who's systems are immobile without it.

I thought the same thing though and told him that a lot of people with pots have that problem.

would your husband be willing to take them alone sometimes?

Are there any other relatives that can help? Like aunts, uncles, other grandparents, cousins, anything??

I wish they didn't make me cry all the time. For real. I'm pretty sure the medical things that are going on aren't pots related really, but they look at my medical history and they don't even try to help. I don't know what to do anymore.

It started helping me in about a week. I had to be very careful about eating when I took it or it made me feel crazy. I still take it and it may be a coincidence but I'm doing better now.

Me, me! I have chest pain!

It used to get so bad that I would just lay on the ground and cry... a lot. When the pots got better, the chest pain did too. I also started taking gabapentin. That helps a bit. And sometimes Ibuprofen helped too, although I used to take so much I got ulcers.

No other pain meds helped me, they just made me sicker, but they've helped other members.

I still get pain when my HR gets high, but no ER in a while

I feel like if I go when nothing's worse then people think I'm an idiot. Seriously. My ex-cardiologist's nurse was like "I don't understand why you still want to see him if you're fine" when it was time to schedule my appointment with him.

Maybe it's one of those normal problems everyone has and I just don't know that because of my weirdo health problems.

Hi friends,

My 6 month appointment is coming up for Mayo, and I have to decide whether I need it or not. I've only fainted and needed IV saline once in the last 3 months, so I'm doing pretty good.

The only thing that bothers me still is, well... "dysfunctional bowel habits" lets say. For a while I took magnesium and it worked, but it made my HR drop and now it's pretty slow again. But how much does this really affect pots? I've heard you guys talk about it a lot.

Thanks as always.

Liz

Hi! My best advice is to get in where you can at Mayo, and then they will get in to the autonomic drs while you are there!

I got an appointment with just a regular neurologist at Mayo in three months. I actually liked it better having a non-autonomic specialist as my main doctor. The specialists can get very stuck in what they have researched and don't think outside the box, but the other doctor was willing to explore other options with me

Interesting! This is my favorite gluten free bread recipe:

3 eggs

1 tablespoon cider vinegar

1/4 cup olive oil

1/4 cup honey

1 1/2 cups buttermilk, at room temperature

1 teaspoon salt

1 tablespoon xanthan gum

1/3 cup cornstarch

1/2 cup potato starch

1/2 cup soy flour

2 cups white rice flour

1 tablespoon active dry yeast

It was the best white bread I could find. There's a different whole grain recipe that I used when I was GF.

To be honest, I couldn't tell the difference based on what I ate. Everyone's different!

Hi everyone! So far I am having the best summer since I got POTS! I can actually do things, and it makes me so happy!

I am working as a camp counselor for kids with autism and it's super low-key, but it's really hard to remember to take all my meds when I'm watching my camper.

So every time I miss a dose of mestinon, my body hurts like crazy!!! My legs hurt so bad I can hardly stand up, and it's really weird. I'm happy the medicine is working. It's the one that has made the most difference.

I am wondering why it's doing this. Not because I'm worried or anything, but because I'm wondering if my body reacting like that means maybe that's the only one that is actually "treating" my problem.

Anyone have experience with this?

I hope everyone is having a happy summer too