CallieAndToby

Awesome! I mis read it for some reason. Good to hear.

So are you saying birth control is good or bad? Or that you think that patch was the bad thing? Just curious.

My friend was having the same issue and it was causing anemia so they ended up putting her on birth control to stop the periods all together. But she doesn't have dysautonomia, she has some GI autoimmune issues. I remember Beverly Karabin telling me that Dysautonomia patients get really sick after blood draws b/c of blood volume issues.

I went to the lab today and a young lady was much more helpful. I did my best but I can't walk around. Hopefully it renders some results. There are only 2 labs here and I have nowhere else to go. I have family in Jacksonville, FL so naturally we have been looking at for potential places to live there (to move) and I also like the Tampa Bay Area.

Well I've been getting worse. Last night I was laying flat on the couch with my legs propped up/elevated, but everything went black and my mom happened to be there (she's an RN for 25 years) and I told her and she said I went into a terrible seizure. I know it's because I'm not getting blood flow to my brain mainly because my head and ears start buzzing, I have all this pressure in my brain and behind my eyes, and everything goes black and seeing stars and double. I'm basically bed bound at this point but still blacking out and seizing. NP Karabin did order some labs but when we went to the lab they didn't want to deal with it because it involves me lying down for 30 minutes then sitting up for 30 or they kept saying walking for 30; the lab also said I was supposed to bring my medication and take it after the lying down part and I told her when getting autonomic testing the patient does NOT take the beta blockers, any of the medication that involves the autonomic nervous system, etc. Anyhow, they just told me to leave and come back another time. My other concern is that I simply cannot sit up or stand for more than 5 minutes so I don't know how to do this testing...... I was supposed to get the testing then try guanfacine. I know that UAB has a new and advanced autonomic testing lab but I don't know how to get referred as I have asked my PCP several times already. Also, can I actually get testing when I'm bed bound? I have a positive TTT from 10 years ago and that's it, my local cardiologist just really pushed compression stockings and gatorade and no further testing; I really wish I'd been sent to one of these specialty places back when I could stand and sit. Any advice is welcome. The seizures are extremely frightening, yea. The most helpful things in my experience have been saline iv's and ivig which was only a 6 month trial when I was much younger for a different diagnosis, but it did help the dysautonomia. Getting ivig approved is extremely difficult b/c it's just limited and very expensive and I would need a port for the saline iv's and ivig.

It's very difficult like you said and also, my blood pressure tends to run very low.

Thank you so much. I can't even leave my bed or sit up without passing out b/c I'm not getting cerebral blow flow to my brain. They keep putting me on vasoconstrictors. My cardiologist (local) put me on Northera and it made me unbelievably ill then she got mad and said she worked so hard to get it approved and I'm like "if you had told me the mechanism of action I would've told you this wasn't going to work". I didn't know caffeine was THAT BAD. But yea I don't drink it for many reasons; last time I had chai tea I was trying to walk down a road and I was falling over and stumbling... so ridiculous. I've also been taking myrbetriq for my bladder and this medicine raises blood pressure, the more I look into it, it is a vasoconstrictor too!!!! I can't escape these things. I'm left with only Bystolic. How do I get blood flow to my brain so I can get out of bed and sleep? It's just not happening. And nobody will refer me anywhere. I'm sorry you can't take the medication you need. I don't have ADHD but after a bout of constant adrenaline which is happening now after cancer treatment, all stimulants began making me super ill. But even many years ago in high school when I had chronic fatigue starting they put me on Ritalin and something else and it did nothing. At that point they were like "you have CFS" but not really I have terrible autonomic dysfunction.

What does it do with norepinephrine?

Yea my mom has read good reviews about this medication. That's good to hear it helped, I don't have such good help from my beta blocker.

So I looked at the ingredients and it has stuff like Caffeine that would be a vasoconstrictor then it has stuff like niacin (which can cause extreme flushing) that is a vasodilator. May be why some of us have had weird experiences with it. I'd just check all ingredients before trying because it has a lot of stuff in it.

It's a huge problem for me. The Vasoconstrictors are making it worse. I never feel like I've slept either b/c of it. I have no idea what to do either. I'm sorry. Just wanted you to know you're not alone. Have you had any hormonal imbalances? My testosterone came back really high and it can be a sign of adrenal hyperplasia but I don't have any diagnosis.

Sarah I already posted a response but do you have problems with your immune system like Common Variable Immunodeficiency (CVID)? This is something I have and I can't get these shots.

I'm sorry to hear this. I can't get these shots or any vaccines b/c my immune system is so poor, I get very sick after just the flu shot. My mom is healthy nurse and got covid shots and felt really bad. I don't think enough is known about it. Again, I'm so sorry. It's good that Dr. Klimas has posted some tips, I've seen her colleague a few times but before this pandemic.

Well it really got bad after cancer treatment, but basically I'm having dystonic / autonomic seizures which means I'm not getting enough cerebral blow flow or circulation in my Brain. I don't know what happened with cancer treatment but I already have a compromised immune system and it really destroyed it even more and I've never recovered. The Common Variable Immunodeficiency (CVID) runs in my family; my aunt has it so bad.

No, I took a pill called Jakafi at a very high dose starting out, then lower dose, all in all for 3 months. But I have had problems with Brevital an anathestic, it caused seizures in me as well. Do you know why it does this?

When I get iv saline infusions (that do help a lot), most of the fluid builds up in my abdomen. I tried a stomach binder and it was like wearing a corset. So I'm going to look into something else. I don't know about the other things you mentioned. You you check into what you're eating b/c there are a lot of blood vessels in the stomach.

Yes, I have had similar experiences with stimulants. I have tried 5 hour energy and it just increased HR and adrenaline, then I crashed like an hour later. I don't think it's very healthy tbh. The only thing that does help slightly is chocolate, not dark, milk.

Yes, I can only sit for about 6 minutes then I faint. So, this is really difficult. It was never this bad until cancer treatment.

I tried Nuvigil and it made me extremely fatigued, tired, and sick. But I should say that ALL stimulants have the opposite effect on me, even caffeine makes me tired and dizzy and losing balance. Nuvigil did increase my HR. Edit: I don't have adhd.

Nice! I really love cinnamon haha. Thank you.

I want to add that the "bites" in replacement of a tube of toothpaste have really worked out! It tasted absolutely minty, suds up well, but has the activated charcoal to really clean the teeth and tongue. 80 tablets in a glass bottle (recyclable) and you basically bite into the tablet a few times, put a small amount of water on toothbrush, and just clean your entire mouth. Inexpensive as well.

Thank you.

That is super interesting. I've only heard of auto-immunity. Thanks.

Haha no. She got it from a restaurant, I gave her a gift card for Longhorne for her birthday today. They're going out fishing tomorrow but it's fresh water so typically they're looking for bass. I will say my favorite fish here are: mullet, flounder, speckled perch. But my favorite fish overall are salmon and mahi mahi. I just get the wild salmon in the packets from Wal-mart ha. I'm too tired.

This is good to hear. I'm happy I have an appt with Beverly Karabin coming up. Otherwise I have no doctor interested in helping in any way. I do have an MRI of the brain next week. I will have to look up "auto inflammation" b/c I'm not sure what that is; I don't have auto immunity, assuming, because prednisone and immunosuppressants make me violently ill and sick and lead to infections. The type of chronic cancer I have results in the bone marrow constantly spitting out cytokines, especially the pro inflammatory kind so that is definitely an issue, have had them tested as well.