CallieAndToby

12 hours ago, KiminOrlando said:

@CallieAndToby22Birth control pills helped me tremendously and additional hormone patches to shorten my period also helped.

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

On 3/20/2021 at 2:28 PM, KiminOrlando said:

Birth control pills. The hormones go haywire and the pills override our nutty bodies and make us 'normal'. My OB/GYN also gave me a hormone patch to put on the day I started to shorten my periods. I don't remember if I had to be off the pill or it was in addition. My adrenals would bottom out too. I could barely walk (low bp) and it always put my gastroparesis in overdrive. Looking back now, no wonder I lost my job. Every 4th week I would miss work for 4 days. 

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. 

14 hours ago, jinglebean said:

That's awful. There are so many meds that do one good thing while making another worse. Some dys people are ok with vasoconstictors so they're fine with those meds, but some aren't and there are less options for us 😕

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

3 hours ago, jinglebean said:

 

I have ADHD and took stimulating drugs before my head injury that caused my dysautonomoia (or rather made it unbearable, I had mild-medium symptoms for years before but didn't know what it was). After, I can't take anything stimulating at all without my brainfog and light headedness and dizziness getting so severe I forget where I am and what I'm doing. Even caffeine makes me so like 10x worse.

I did some reading on it and caffeine restricts blood flow to the brain by 30%. Most stimulants also are vasoconstrictive, and if you are having trouble getting enough blood to your brain already (what causes those cognitive symptoms in dysautonomia) then they will make it worse. Look up Cerebral Blood Flow to learn more. 

But yeah, I can't have any caffeine or take my ADHD meds at all anymore. Having brain fog plus ADHD makes it so hard to function most days.

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. 

20 hours ago, Jason_X said:

The insurance companies are horrible. They wouldn't cover my prescriptions either, despite my cardiologist doing everything they asked for. I've been getting the generic via mail order from Canada and paying out of pocket. Thankfully, my doctor is willing to work with me on this. The Ivabradine slows my heart without the awful side effects of the beta blockers, and I've tried LOTS of beta blockers as well as Clonidine.

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. 

9 hours ago, Clueingforlooks said:

Hi @Abe just wondering how your going with this symptom. It’s worsened a lot for me recently and nothing seems to be helping. Just so hard to move or exist! 

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. 

22 hours ago, Sarah91 said:

Hi everyone,

 

My name is Sarah and I've had Dysautonomia for over 10 years though it is quite well controlled on a day-to-day basis. However, I just received the first dose of the Pfizer vaccine and had a bad reaction a few hours later that felt like an autonomic surge: shaking, horrible headache, vomiting, so hot, nausea that lasted for days.

 

I'm nervous (re: terrified) about getting my second dose but having a really hard time finding any doctors who see enough Dysautonomia patients to make a good recommendation. Does 1) Anyone know of a doctor I could consult with on this in the next two weeks (my appt is 3/24)? 2) Anyone know if Dysautonomia International or another entity tracks reactions/has guidance?

 

Thanks so much in advance for any help you can provide.

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. 

20 hours ago, Nin said:

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? 

I started having seizures after a 3rd operation for some reason....I still haven't figured out why. what triggers your seizures? Do you have mcas?? 

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. 

2 hours ago, Nin said:

If you don't mind I just wanted to ask with your cancer treatment did you have to be put under anaesthetic for anything? I know you have said about having seizures and was wondering if it was anything to do with anaesthetic. That's when I got really bad after a operation 

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. 

On 1/21/2010 at 6:40 PM, Tifbmel said:

The first time I tried the natural five hour energy drink.....I ended up in an ambulance headed to the emergency room. It was the visit that determined something wasn't right with me. I can't blame the drink for the sudden onset of my POTS but it was the only thing different in my life. My guess is I had POTS and the drink made it worse. Everyone is different but I won't try it again.

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. 

17 hours ago, yogini said:

Have you tried sitting down in the shower?  You can use colder water and it also helps to bathe late at night, way after you’ve eaten

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. 

9 hours ago, Peach said:

I use homemade dry shampoo as I can’t do all the chemicals either and I hate the way it makes it makes my hair feel. I mix cornstarch, cocoa powder and a dash of cinnamon and apply with a make up brush. 

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. 

On 2/23/2021 at 8:05 PM, Delta said:

Hi, @CallieAndToby22,

What's helpful to me with the shaving is waxing, cus then I don't have to worry about hair for a while! If it's safe for you to go out and get a wax and you are able and your skin will tolerate it, it's worth it. If not, you could try Veet from the drug store, which are these strips that have wax.  It's just nice not having to worry about it for days!

I feel for you with the bath thing . . . before I was diagnosed and prescribed meds, I was afraid to even sit for a bath (and I love baths!) because I was afraid I was going to pass out in the tub! I had to take baths when my husband was around . . . believe me, at that time, a bath was the least of my worries, ha ha! So sometimes it was like . . . days. Much less washing my hair. I was so gross. Are you able to sit in the shower with a shower chair? That helped me immensely. If you don't already have one, get a shower head attachment with an extra-long hose - most hoses are about 5'; the longer ones are at least 6'. They will reach everywhere, if you get my drift, even when you're sitting in the shower chair. 

Re: the deodorant thing - my husband and I use deodorant, not anti-perspirant, for different reasons, and we have found some good stuff you may be able to use. My husband has sensitive skin and anti-perspirants and deodorants always gave him a rash under his arms . . . a few years ago we found this deodorant (*not* anti-perspirant) cream in a little jar called "Yodora" . . . it is awesome stuff. It works for my husband, even if he's been out working in the yard on hot, humid day, and it works for me. It has a very light and pleasant smell. It does not irritate my husband's skin in the slightest. I use it because, being a deodorant and not an anti-perspirant, it does not contain aluminum. What's amazing about it is that a little goes a very long way - the 2-oz. jar lasts at least a year, even with daily use.

I've also recently been using a deodorant made of citrus extracts called "Waleda" - found on the "C. O. Bigelow" Web site. Good stuff. It's a liquid spray in a bottle that has a light lemony scent; made in Switzerland. I also have to say that Johnson's corn starch (no talc) baby powder works really well as a deodorant. I'm guessing straight corn starch may work just as well.

Sending you good vibes!!

 

 

Thank you. 

On 3/7/2021 at 6:26 AM, Pistol said:

@CallieAndToby22 - there are two different types of immune systems: the one that responds to antigenes ( when it is attacking normal cells it is called auto-immunity ) and the one that is always active - the innate immune system. It consists of blood cells etc. When it is overly active it is called auto-inflammation. Here is an article that describes the innate IS:  WHAT IS INNATE IMMUNITY? | Center for Innate Immunity and Immune Disease (washington.edu)

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

5 minutes ago, Pistol said:

Do they catch SALMON in FLORIDA????????

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. 

On 10/20/2020 at 8:58 PM, Pistol said:

I watched several of the sessions and they were very interesting. What excited me the most is that Dr Grubb eluded that earlier this year they were getting close to some new findings linking auto-inflammation ( vs auto-immune ) to dysautonomia, but due to COVID all studies and research had to stop. As soon as studies can restart he sounded hopeful that new information will come out. Sooooo awesome!!!! I love it when that happens 😀!

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.