Oh boy...here we go again

The lyrics to OK GO!'s "Here it Goes Again" definitely have a meaning to me today:

"Just when you think that you're in control, just when you think that you've got a hold, just when you get on a roll, here it goes, here it goes, here it goes again. Oh, here it goes again. I should have known, should have known, should have known again, but here it goes again. Oh, here it goes again."

The POTS symptoms keep coming back. Today, of course I am tired. I always am. But today I have a "pressure headache". Not quite a migraine, but not quite a normal kind of headache. The headache is mainly focused on the front right section of my head. At least it's not my entire head that aches!! My vision is a bit altered because of it too. That worries me sometimes, but it's still rather normal-ish. I can't see really far, but that's okay because I have glasses. If I could actually wear the glasses, that would be nice! Wearing the glasses puts additional pressure on my head, so it's not always a good idea to have glasses on or a headband. Thankfully I was able to blow-dry my hair today so that I don't necessarily need a headband. 

I thought the day started off smoothly. I was able to shower, get dressed, and even blow-dry my hair. I look pretty good today. But, I don't feel as great as I look. I have more tremulousness again, especially in my hands. It appears as if I am nervous or anxious or something like that. The problem is that I am not nervous or anxious so having shaky hands is quite distracting. I also have a difficult time verbally expressing myself today. I can come up with words on paper or through online communication, but speaking is difficult today. So, talking, headaches, tremulousness, and fatigue....great. I was really looking forward to a decent day today. I think it should get better, at least that is what I am hoping for! :) 

It is all just really frustrating when I try and try and try and try to get better and I am doing everything that I am supposed to be doing. I just have not felt any of the results from my hard work. I have never expected the hard work to give a very fast response, but I was hoping for at least some kind of result. It's almost as if I worked on a term paper for weeks and weeks and I turn it in early, and then I didn't receive the grade for the paper for several months later. That's what it feels like. It will get better though. Soon enough I will see results :)

Updates for February

Well I talked with my doctor to see what new things I can do to help with my brain fogging and excessive fatigue. The Nadolol and Midodrine that I started taking again a few weeks ago have not been helping. So, my doctor says that I should try to skip the Nadolol for a day just to see how I feel without it (I did that today). If there is no change, then I will skip the Provigil for a day to see how I am without that medication (I will try to do this tomorrow). We are just trying to find an improved medication balance that will help me get through daily living.  


My doctor does not have great explanations as to why things are worse for me now, but he does know that this can happen. He says that I should still recover too. I have been very very very fatigued and extremely brain fogged. I have more headaches now and more dizzy episodes too. I do not know if the changes in my symptoms are related to the changes in weather. I truly just do not feel any different now than when I saw my doctor in early January. I am very frustrated because I am trying my very best to feel better. I am doing everything right. I am still exercising intensely for at least 30 minutes every single day and drinking a ton of water and eating a ton of salt with everything (to the point where I get really bloated by the end of the day now because of all the water and salt). I am also taking 40 mg of Nadolol in the morning, 200 mg of Provigil twice a day, 150 mg of Lyrica twice a day, 10 mg of Midodrine three times a day, and 5 grams of ferrous sulfate (iron) at night. I know that the results do take awhile to really take into effect, but I am struggling to keep up with my schoolwork because of the symptoms. 


I am still barely making it through my everyday routine. I am experiencing brain fogging and fatigue that limits me in succeeding in my schoolwork. I dropped out of my child practicum class because I know that if I cannot manage daily life yet, I should gain some strength before I have to take care of preschool children in a classroom setting. I also quit 2 of the organizations I am involved with so that I could lighten my workload. I took a leave of absence from my other 3 organizations so I can solely focus on schoolwork. Anything to help me feel better is the ultimate goal of mine, even if that means giving up some of the things that I am passionate about. 


I am still positive and hopeful that I will get better, that my symptoms will get better, and that life will get a little bit easier. My hard work has to pay off eventually!!! :)

More Info to Share

Sorry I am a very choppy speaker...it's mainly due to the brain fogging. And sorry it ends so abruptly! 

Just Goofy Me!

I Felt Like Researching Today...

I found that there is a possible link to a mutation in the MTHFR gene. Watch this video: http://www.youtube.com/watch?v=8pdi0k9x4sA&feature=mfu_in_order&list=UL

I'm not sure if this is going to really be a cure or anything, but at least this could be a bit of new information for doctors. Any information is some information, so that's all that matters.



I forgot about this amazing 3-part video series that is from the Dysautonomia Information Network. Please share these videos with others! It is very easy to understand what POTS really is!
Part 1: http://www.youtube.com/watch?v=Fx688XLvA8k
Part 2: http://www.youtube.com/watch?v=bTM8RNzV6k4&feature=related
Part 3: http://www.youtube.com/watch?v=4rtcw23CFqo&feature=related

Just something to cheer us all up...?

I told you, I have been teaching myself guitar. :)

Waiting Game Still Continues...

Well I did hear back from my doctor and nurses. I will be on 40 mg Nadolol in the mornings along with the 10 mg Midodrine (3 times a day) so that my body can kick itself into gear...hopefully!! I have to continue what I am doing now with the water, salt, Gatorade, and exercise. So, overall it is okay, but I still don't like waiting for results. I am doing everything that I am supposed to be doing. I listen and ask questions. It's just that the doctors don't know how else to help me besides putting me on more medications. That's frustrating. And, of course, when they put me on new medications, I have to wait at least a week or so to reevaluate whether the medication is helping or not. Have I mentioned that I don't like waiting......????!!

Being patient is tough when I'm doing everything right. I just want to see some kind of results from all of my hard work towards feeling better. It's frustrating when I have to give up a few things in order to be functioning at a semi-normal level. Of course I am very exhausted and brain fogged every hour, every day. My schoolwork is being affected by the brain fogging especially because I have a very small window of opportunity to work on my homework or study for tests. I cannot comprehend information as well as I used to, I get very forgetful so I must keep 4 calendars and 1 daily planner to keep me organized so I won't forget anything, and I cannot participate in class or even life as much because I cannot vocalize what I am thinking or I am in such a phase that I don't know what's going on around me sometimes.

Being a smart cookie, I know a lot of information. Learning is my passion. I cannot succeed in learning when I am so brain fogged all of the time. School is my life. I love it! But, I do not enjoy it when I am struggling so much to simply comprehend what my professors are saying in classes. I have stress when I cannot complete homework assignments or projects at the level that I used to. Yes, I am a perfectionist. Yes, I have limitations. But why does that mean I cannot perform well in school as much as I have in the past?? I don't understand why there is such a change with my brain fogging and fatigue. I don't understand how I was doing so well last year and now I am not so well. I thought that the uphill climb was over. I guess this is just another mountain I have to climb before I reach the peak--until I get better.

Man it is tough though! It is tough when doctors tell you that you are doing everything right and they are conflicted as to what they should do or say to me. It feels as though I am the puzzle, and since I have a difficult solution, the doctors put me off for awhile and walk away, or they just have misplaced the box with the picture on it showing them what the solution is. I am frustrated. I am struggling. But I still am pushing through. I am trying to prove that a person with POTS will never give up no matter what crap they are dealt. I am trying to show doctors that I am a fighter, and I will win this battle some way, somehow. I just have to wait to feel the results of all of my hard work...