Mentally Preparing Myself for Cleveland Clinic

I called CC today to just get some more information on what I'll need to do. It looks like I might be needed more than 1 day, so we are going to have to make some arrangements.

I know that my adrenal insufficiency diagnosis is going to be a problem with this doctor. I told the assistant on the phone, that I wanted it noted on my chart that I have this so it's not a surprise/problem when I come in next week! It is with every single doctor I see.

"Yeah...I never had a stim test." As soon as those words come out of my mouth, the doctor will probably go into the "well it's not good to be on steroids if you don't need them and they'll make your bones crumble". I can already hear it now. So I'm wondering if this doctor is going to poo-poo it or want me to see one of their endos. HAHA If they are willing to put me on Dex and then do a stim test, I say bring it on! There's no way I can come off the HC as I'll likely go into crisis. I couldn't even lower down to 15mg! And...there's no way my adrenals haven't atrophied over the past year on HC. They won't likely stim whatsoever and then I'll have my nice Addison's diagnosis. I still have to wonder about my mildly elevated 17-OH progesterone. My hormone doctor immediately dismissed it, saying it wasn't "high enough". I'll never know. I've seen some info that late-onset CAH usually doesn't present itself with the crazy high levels until stimmed with synthetic ACTH.

Since it's warm out, I really need to be on florinef. It's killing me. My sodium is dropping (new blood work) and I just feel terrible as soon as the room heats up. Gotta love those salt cravings, which are nearly impossible for me to cure since I've stopped eating vinegars (olives, pickles) and all wheat (crackers, pretzels). I had one of those awful headaches yesterday and since I wasn't on any florinef, I'm thinking the headaches might actually be low aldosterone or low cortisol!!! I'm realizing that lowering my dose hasn't been so good (took a few weeks!), so I'm taking 20mg at the moment dosed 10, 5, 5 So..I'm going to try taking florinef again. Tomorrow I'm trying 1/4 tab of florinef and going from there. I'm not worried about it messing with my tilt test because it didn't before.

All I hope is that CC takes me seriously and runs tests. That's all. I don't need to walk out of there with a solution or even any new meds in my hand. I just want to get enough testing done to determine the type of POTS I have. Is this a mitochondrial disorder? Genetic disorder? Blood pooling in my limbs? High catecholamine levels? If I can get some answers to those questions, then I'll be satisfied. I truly think I have something WRONG with my body. I've been trying to do some leg exercises lately. Oh my gosh, it's soo awful for me. Today I woke up feeling pretty damn good with no headache. Then I did a bunch of leg raises (while LYING DOWN) and my heart was likely 150+. Leg exercises are worse than arm exercises for me, which isn't supposed to happen...I don't get it anymore and I don't even try to get it.

Well that didn't work...

Sometimes you have to take things away before you realize how much of an effect they were having.

I sincerely forgot to take my beta blocker a few days ago. Well I didn't notice any problems, so I thought I'd "forget" the next day. I went 2 days without any problems whatsoever. My heart rates have been high since it's warmer out now, so having high heart rates wasn't alarming to me. Today, I purposely did not take the beta blocker. I didn't think anything of it and was going about my day. I noticed my heart was beating REALLY weird. I thought it was odd, so I started to feel my pulse and I could actually feel the skipping beats. I've never ever in my entire life have felt my heart do what it was doing today. It scared the living &%#^ out of me.

I realized that I needed to take the beta blocker and see if it got my heart beating back on the right track. It was all over the place. It would go really fast for 4 beats, then slam into my throat really slow, speed back up and rinse, repeat. All of this was happening as I was trying to find a new pair of pants to buy! haha I was sweating in the dressing room and just felt soo uncomfortable and even nauseous. It took 45 minutes for the beta blocker to kick in and then all of those crazy beats disappeared...completely. I have no idea what happened to me today, but I was ready to go to the ER. I didn't even think to take my BP today. /SIGH

Going down to 15mg of HC was disastrous. It took me 1 day to realize that was a bad bad bad idea, so I'm back up to 17.5mg. I seem to do well here for now.

In 2 weeks I am going to Cleveland Clinic. I have to get all the paperwork (labs) ready. I was trying to be off the beta blockers for the TTT, but I'm not sure I can even do that...

Lowering my HC

This is one aspect of my treatment that I've never changed, so I've decided to start slowly wean down on the HC. Originally I was on 30mg of HC and that was way too much for me. Then I went down to 25, 20 and now I've been on 17.5 for about 3-4 weeks.

Today is my first day at 15mg and I'll hold steady here for a few weeks to see how I am reacting to it. I want to be on the least amount of HC as physically possible.

Forced Myself

I was not really feeling so well today, but I made myself go to the park and walk some. Heart rates were entirely too high for the level of activity I was doing, but it was nice to have the sun on my face. Afterward, I crashed. Just had to take a nap. The nap made me feel even worse (if that's possible LOL), but now I've recovered.

It's 12:30am and I only now feel good.

Today is a TERRIBLE POTS Day

Today is just SOO awful. How the hell am I supposed to live like this? I just feel like bursting out in tears because my the youthful years of my life have been wasted. If I can feel this terrible at 26, then I'll likely be in a wheelchair at 40.

Main Problems/Symptoms

I've decided to make a post that discusses what my continuing health problems are even though I've been on HC for nearly a year now! I'm also going to touch upon what has gotten better. Sometimes it's really easy to focus on the bad and I'm trying to get away from that negativity.

Symptoms that still linger:

• Lowish BP, without lightheadedness
• Anxiety
• Fluid Retention
• Rapid heart rate upon standing
• Heat intolerance
• Panic attacks set off by minor stressors
• Shortness of breath
  

What's better:

• Panic attacks are actually less frequent
  
• Fatigue improved significantly
• Able to get out of bed in the morning now!
• Not sleeping 16 hours a day
• Can partake in some activities (as long as my heart is stable)
• Frequent urination and thirst decreased significantly
  
• Sex drive is back! Woohoo!! ;-)

Most of my lingering symptoms, I would attribute to POTS. In my case, treating adrenal insufficiency DID NOT cure orthostatic issues. Because of that, I have to assume that not everyone WITH low BP and tachycardia upon standing even HAVE adrenal issues. Something else is going on that hasn't been uncovered.