Well That Didn't Work

Last Thursday, I had a friend mention that I seemed very "off." This bothered me. I know I've been having a very hard time coming up with words. I've had tingling in my face and MAJOR symptoms POTS related. I got to where I couldn't bend over at all without getting sick within seconds. I felt almost manic. I was feeling much worse, but I didn't think others could tell.

Because I'm on so many of the epilepsy pages for my husband, I saw someone post they were having horrible side effects from Topomax. She said she was having a really hard time coming up with words. That did it! I had been put on Topomax the beginning of January for the headaches. I didn't really want to go on a seizure med just for headaches. Especially when I feel they are more related to cortisol than the POTS crap. My husband has been on so may and they all have horrible side effects. Unless they are for seizures, I'm not sure I'm okay with prescribing them. So I decided to stop in that night. I took all the pills out of my organizer and haven't looked back.

Today is the first day I haven't had at least a mild headache. It's been the same as it was before. Mild headache and stiff/sore neck. But that's better than feeling like you are going insane, I guess. My capacity to type has returned. I'm able to think clearly. My heart rate hasn't been racing quite so high. I've also not had the weird tiredness in my arms and jaw. It can sometimes take those meds a while to fully leave one's system. I'll report back in a few days.

I'm still very upset with my POTS doctor, though. I'm going to write it here in case anyone googles this. Juan Figueroa at Mayo Jacksonville. I was calling and telling him all these symptoms and he suggested I see my General Practitioner. Crock!! As a neurologist, he should have known I was having a reaction, or at least a possible reaction, to the medication he put me on. I'm disappointed at how he blew me off. I'm going to definitely tell him this when I see him on March 19th.

He did schedule me to have all the testing repeated. I almost want to go back on the Topomax before I go down there so he can see what it did to me. I want it to completely screw with all my tests. What an ass. I would do this if I weren't scared the med could do permanent damage. Ugh!

CRASHED HARD

So on 02/11/2012  I crashed pretty hard. I felt it coming. My vision started going first. It got blurry and going all tunnel vision around the edges. Problem was I was driving and was 2 hours from home. I took 40 mg hydrocortisone right away since I had been backing off on it I wanted to make sure I wasn't crashing on it. And because I didn't know what else to do. Then I started feeling really heavy. I started feeling as if I were going to fall asleep. Fast. So I pulled over.

I told my husband (who can't drive because of his epilepsy) that I just needed to wait a minute for my hydrocortisone to kick in. Then apparently I went to sleep for about 15 minutes. I woke up and drove across the street to a gas station. I got out of the car to go get some sodium. This was very difficult. I could barely walk. My legs were very weak. But I knew I needed to get my blood moving. So I went inside and bought a bad of chips and a Gatorade. I sat and ate some chips then felt a little better. We got back on the road.

About an hour later I felt back to where I was when I started on the trip. So it was what I would classify as a crash. I would also say it was just like the ones I had when I first started going on hydrocortisone. So I don't think it is the POTS. It was like the extreme fatigue I would feel when I would have to go lay down when they switched my meds in Boston, too. I called the Endo today and I'm going to seriously push on his end for a rescue steroid that can be given by someone else. Because Jason might have had to have given that to me and he couldn't have given me a pill. I might have thought it was the POTS if I hadn't felt it before when I was going through the hydro phases in the summer.

This is what I wrote on the POTS page on Facebook:
I hate having no cortisol and POTS. It makes it very confusing as to which is causing the "crashes" and how to treat it. And which doctor to call. They are very similar. Each doctor responds with, "Well, did you call your other doctor?" Ugh! I have to treat the dysautonomia to make the correct signals go to the pituitary for the pituitary to send the correct signal to the adrenals to produce the cortisol so my body can function. But in the mean time, I have to artificially stimulate my cortisol by taking steroids but not too much steroids because that could permanently damage my adrenals which aren't damaged they just aren't receiving the signals. But 5mg too little makes me crash and 5mg too much makes me nauseous and have a headache and I never know from minute to minute what that line is because it depends on my period and what level of activity I'm doing and how much I've eaten and the direction the wind is blowing. 

Feeling Well

So four days of the decreased hydrocortisone and I'm feeling much better. I'm not sleeping extremely well, but I'd rather sleep light than sleep way too much. I need to contact my Endo and let them know of the new changes and have my levels tested. It seems my energy levels are fine. I can tell the last couple of days towards the end of the day my knees have been very sore. So I might need to take an extra 5mg at lunch. But I'm excited to decrease my hydrocortisone for the first time.

I also heard from Mayo. It was the assistant to my doctor. She was responding for him. He is not allow to communicate to patients by email (in response to my nasty gram I sent him). Wanted to know if I still have my unexplained cough (yes)? Wanted to know why I have my concerns (you don't return calls and don't seem to really care about me as a patient. I was feeling horrible. I was extremely nauseous, headaches and dizzy. My heart rate was really high but I didn't know what to do about it because I couldn't get an appointment or a doctor to call or answer.) Well you do have an appointment it's on....and so basically nothing. Whatever. I'm going to go. But from what I've been able to gather from the facebook sites and reading on my own (and changing my cortisol) I think I can manage it on my own. I do want to ask to see the heart doctor, though. The tachycardia when I'm laying down is worse and it is bothersome. I'd like for that to go away. I also told her about my arms being tired. She said, well that can happen when you start a new activity (meaning my swimming). And by tired I mean when I shampoo my hair, drive, hold a book, etc. They are just tired. Even typing now. They feel worn out. It's weird.

That's all for now.

Cortisol

I forgot to take my meds right when I got up yesterday and noticed I wasn't nauseous. So I made a scientific decicision to try and see if cutting back on my cortisone might actually work. I only tool 10 mg yesterday morning and 5 mg yesterday night. I was a little nauseous this morning after my shower, but then was fine. I took 10 mg again and haven't taken anymore until I take 5 mg tonight. Wow! This is the smallest amount I've taken in 7 months. So yesterday and today have gone well, anyway. Let's see how it goes. I have been getting "worse" since being put on the hydrocortisone. Now they say that I was on a downward spiral already...We'll see. Of I start feeling better I'll go in and have my levels checked to see what they show.

Surging

Surging is the new word for today. My heart feels like its racing. I'm shaking. I'm really really nauseous. Andeverythingfeelsjustlikethiswhenitisgoingoninsidemyhead. I keep panicking that I've forgotten something. Something I'm supposed to be doing or left somewhere. It's crazy. Like that feeling when you wake up all of a sudden in a panic that you are late but then realize you aren't? That's how I've been feeling about 20 times a day or more the last few days. I'm so ready for it to stop. I keep trying to calm myself down. All I know to do is make a list and check it over and over and reassure myself that I'm okay. I'm lying in bed with an ice pack on my chest right now.

Spoon Theory by Christine Miserandino

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

This is a link to a great story about what it's like to be sick but not look sick. It's hard for me to link on my iPad, so you'll have to copy the address to your browser. It's worth the extra second.