Well latest Dys. visit is over with. I started the day with barely 3 hours sleep, got up got myself and the girls dressed (no sitter this time), and the 4 of us were leaving around 8. It was a nice morning. Cold and a dusting of snow on the ground from last night. It’s a rare event around here usually but this was the 2nd time we’d had snow on the ground in the last 4 days! Anyone who knows me knows that snow is my favorite thing, so it was a pleasant surprise to see it still covering the ground.
My appointment went well. I didn’t get to have Eric go back with me to talk to the Dr. like I had hoped, but Dr. Phillips and I discussed a lot. I actually had a timeline of events since my last visit and a list of symptoms I’ve been dealing with since my last visit. I think this helped, especially since my thinking was not clear at all. We discussed everything on the list and the main things we talked about were my lack of sleep, tachycardia, breathing problems, and mood swings.
My sleeping has been horrible lately so we talked about the Trazidone and Klonopin. During December when I was blacking out and going unconscious I had called their office and the nurse said Dr. Phillips wanted me to stop the Trazidone. And later when I was still not sleeping I gradually came off the Klonopin, thinking it was only for helping me sleep… I was wrong…lol Found that out today! I also had put a call into my neurologist about the headaches, and was told to stop the Topamax since it wasn’t working. This left me only with the Metroprolol. So that’s what I’ve been taking since end of December. Dr. Phillips said that I was taking nothing to treat my problems other than tachy, and had she known they took me off the Trazidone for blacking out she wouldn’t have done that, so I’m to go back on the Trazidone and the Klonopin. Once again I have to start low and build up till we find a dosage that will work. She added Zoloft to help with the mood swings, said that and the Klonopin would also help with my breathing. During the time she was writing my prescriptions, the quick breaths that spontaneously happen to me causing the really bad breathing problems at times, spontaneously happened. She turned and told me that was the dysautonomia and that the klonopin should really help that. This relieved me a lot considering that last week I had so much trouble with this that I literally could not get any air in or out. So now I wait until we find the right dosages.
As for my heart rate going back up after taking my beta blocker, she added another pill at lunch. So hopefully this will keep me from getting so tired mid-day and get me through the day. She also told me that the blackouts I experienced were from my blood pressure dropping. So she asked about my sodium, and I told how when I’m out and about I constantly chug gatorade, and she asked about when I’m at home. I told her I don’t drink as much gatorade when at home, but I drink water. She told me to take in significantly more salt and sodium at home and when I’m not at home. This should keep my blood pressure from dropping so low and keep me from blacking out. She mentioned Propel water, but I’ve never drank this and I’m going to try it I think. Right now I drink G2.
Now this was the hard part…lol We talked about my appetite. How I may not have an appetite for a few days and then how I can’t seem to eat enough. I told her how I sometimes even forget to eat, and I was told that if it takes writing a schedule and checking it off that I definitely need to eat at least 3 meals a day and she’d prefer 2 snacks like nuts, peanut butter and crackers, etc to keep my energy going. I remarked that I don’t like any of those things and most veggies and asked what types of food I should be eating. She said low-carb. Since I’m definitely not a diet person I asked what that would be and she mentioned most everything I eat! Especially the pastas… I have pasta at probably almost every meal! (It’s one of the few things that Eric can cook well, so he does it a lot.) Now I’m trying to figure out what I can eat that I like, that will be an acceptable food. This is going to be the hardest part for me I think. I also have to ride my bike or walk every day for a minimum of 5 minutes. This might make it easier for me, instead of pushing for 15 minutes minimum. Some days I’m just not able to do the 15 minutes because I feel so cruddy, but I think I might be able to do 5 minutes, and I’ll push to do it if it’s going to help.
I have lab work to be done also. I’m getting a full blood work-up, thyroid and hormonal included. She also gave me the number of a Dr. who’s specialty is hormonal imbalances. She told me to call and get info on prices since I’ve got no insurance. She also told me this Dr. is retiring soon so that if I’m going to see him I have to do it soon, so I’m going to look into this too. Especially considering that she feels my hormones are out of whack and majorly affecting me.
I think I’ve covered it all. Med changes – start the Trazidone and Klonopin again, add Zoloft, and add an extra dose of the Metroprolol, and a multi-vitamin. Get the blood-work done first of next week. Call Dr. Phillips back in 2 weeks if I’m still not sleeping and other symptoms haven’t gotten better. And I have a follow-up in 6 weeks again.
So there you have it, my latest check-up. Wasn’t brief, but I’m sure compared to other’s with Dys. it could have been much much longer. Oh yeah, she also told me I was a classic case. I asked what she meant and she said that I am a classic really bad case. We talked about how long I’ve felt bad, and I told her I’ve never felt up to speed but the last 6 years have been gradually worse, and I also feel worse now than I did last year when I couldn’t walk. I asked if it would continue to progress and she stated that it shouldn’t as long as we get the right concoction of meds. I asked her how long it would take to feel better when we do, and she said could be 6 weeks, 6 months, who knows… it just depends on the meds and all. Oh, and the best tid-bit of today! I asked about if I could ever have another baby, or is it not a good idea. She said definitely not right now, gotta get better first, but it’s not out of the question later on. And I could still use my OB and not have to see a specialist OB! So now that I know I still have one dream left to look forward to that at this point is my choice, it’s a good feeling. To know that at this point, the disease hasn’t taken away every thing that I dreamed of is a happy thought. I may make the choice to keep my family of 4, but I have the choice… and that is a good thing. Oh yeah, and on the drive home… the snow had melted and things were back to normal here in Alabama!