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...

The Waiting Game

The waiting game stinks!!!! I really don't want to wait forever to hear back from my doctor. I want answers. I want some relief. It feels like they constantly are forgetting me because I am not there in the office talking to them face-to-face. I am attempting to talk to the middleman in order to talk to my doctor. Why can't this process be easier? Or at least faster?

I feel sorry for the people trying to contact their doctors when they are in emergency situations. I know I'm not an emergency to my doctors, but I can barely function. I can barely make it through my day. I am too exhausted and brain fogged to do much at all. My schoolwork is being affected by it already. Yes, I still have decent grades, but I'm afraid that if I am too brain fogged or fatigued, my test scores will drop or I won't be able to do the best I can possibly do. I stepped down from one of my clubs so that my responsibilities will be filled by someone else. I have retreated, and I don't like it! I do know, however, that this is for the best.

Somehow, some way, I will feel better. Whether or not my doctor can give me a clue into how I can be feeling better is the question now. I know that my determination and strength will help me to feel better eventually. It just would be so much easier if I had some help from effective medications or something! Patience is key now. I will try to be a patient patient! :)

Theme Song of this Month

Even though the song is technically about a relationship ending, I feel that the lyrics are what really count. What doesn't kill us really does makes us stronger....so I have had this perspective since day 1---since 2008.

"You think you got the best of me. Think you had the last laugh. Bet you think that everything good is gone...What doesn't kill you makes you stronger. Stand a little taller...What doesn't kill you makes a fighter."

This song is true with me. My relationship with POTS has made me into a fighter. It has made me stronger. I have the strength to overcome this chaos and pain. Everything is still good; the good is not gone. I can still do some things that I want to do. I have to be thankful for that. I do stand taller because I know that POTS has not won. I know it won't.

Hoping to keep this perspective even through all the chaos of having POTS. :)

Frustration...

Well, in my last post I said how I would probably go on the 5 mg of Midodrine. Well, today I couldn't take the symptoms anymore. I had to start the 5 mg because I couldn't function. It's not even the pain that is truly bothering me anymore. That I can deal with. It's the brain fogging and fatigue that drive me absolutely crazy! I can barely get out of bed. I could not pay attention in class or at work. I feel like I'm in a daze or that my brain is falling apart. The things I used to be so amazing in, like comprehension of class material, speaking, creating art, and being efficient and productive have all been thrown out the window. I feel as though I cannot do these things well at all. I constantly misplace items, forget what I have learned in classes, have trouble forming my words and conveying my thoughts to others, and staying on-task. Considering I have POTS and cannot do other things that "normal" people can do (go to social outings, play sports, and travel), I have always relied on my inner strengths and knowledge to be successful. Now that those things have also been damaged, it is difficult to accept these changes.

No matter what I do, it doesn't seem to matter. I do EVERYTHING that my doctor tells me to do. It is so frustrating to just handle the symptoms when I am trying so hard to get better. My body is going to do what it's going to do, but I just want it to cooperate with me! It is so hard to convey the frustration to others because they just see me as the girl who is an overachiever who just looks tired, even though they know I have POTS. It almost feels like my whole body is damaged, like some specific part is missing, and I need to find that part to fix everything. But, that is not the case. I have POTS. It is frustrating. All I can do is continue doing what my doctor tells me to do and keep hopeful thoughts that everything will get better soon. All of my hard work will pay off eventually. Sure it is definitely not fun in the present, but I'm pretty sure the future holds happy and fun times ahead! All I can do is wait.

Mother Nature sure is confusing me!

Well the weather has been crazy this winter!! Today I walked to class and had sleet hit my face. On the way back to my dorm, it was pouring rain. Now it is super dark and cold. Such a strange season! It definitely does not help with my symptoms though. Having the weather bounce up and down in temperature and in precipitation makes it difficult for me to differentiate muscle or joint pains due to working out more now and the tightness in my muscles and joints due to the weather changes.

It is frustrating because I need to figure out if I am feeling better on the 2.5 mg of Midodrine that I started last Friday. My doctor says to try that out for a week, then if I don't feel better, I will go on 5 mg. So, no more Nadolol, which is good because it made me pretty tired (even more so than usual). But, due to the weather fluctuations and my symptoms fluctuating, I cannot tell if I feel any different with the 2.5 mg of Midodrine 3 times a day. So, I hope that with the increase that I will start on Friday, I will get to feeling even better!! :)

Yeah I'm still there...

Even with a medical condition like POTS, I'm still here. I'm still me. I can do whatever I want to. I can achieve anything I want to. Sure there are plenty of limitations with what I can do, but I can still do things I want to. If I push through the pain, force my fatigued body to get up, then I can go to college, get straight A's, be involved in multiple organizations, and take part in hobbies. It takes a heck of a lot to push through the pain and fatigue and brain fogginess, but I can do it. It is possible.

Just as Eleanor Roosevelt said, "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do." 


POTS may be tough to live with, but I know that no matter what, I can achieve anything I want to. 


Being up at the Mayo Clinic was frustrating, but at least I have an answer as to why my symptoms were getting out of control last semester...I am officially NOT in recovery anymore. My POTS has relapsed. There is no way to truly explain why it happened, but it did. Now I am back on the Nadolol, and possibly the Midodrine again within the next few weeks. I still am very very fatigued and brain fogged. The generalized pain is alright, definitely tolerable, but not unnoticeable. I tend to have more headaches that are annoying at times and get pretty dizzy because of the Nadolol's effect of slowing down my heart rate. But, it should get better. I should be feeling better soon! I am just very thankful that I have a wonderful support system and understanding professors! That makes everything so much easier! :)

Merry Christmas...hoping for a Happy New Year!!

Well I haven't updated in quite awhile. I have been busy with school and not feeling 100% either. I have been experiencing several symptoms that I used to have from way back when, which is extremely frustrating!! A lot of my generalized muscular pain has lessened, but I have been experiencing much more:

- pin-point head and eye pains
- troubles with speaking, especially forming words into sentences and verbal expression (troubles saying what I want to say correctly and consistently)
- problems with short-term memory and remembering instructions (difficult to carry out a task that requires multiple steps)
- over-stimulation with sensory stimuli
- temperature over-sensitivity
- brain fogging!!!
- shortness of breath

These symptoms interfere with my everyday living. This is difficult for me to cope with because of the great impact it has. They affect my ability to complete my schoolwork and social life. Today is Christmas Day and everyone is at our house--grandparents, aunt, uncle, etc. The problem is that I am overwhelmed and very very fatigued. I cannot take part in the social experience of small talking with family members, or even sitting in the same room as everyone. I am exhausted by the time I get ready for everyone to come over (blow-drying my hair, putting on makeup, getting dressed, helping with last minute tasks), so this causes me to already hit my threshold. I am physically able to get ready, but that is too exhausting for my body that I cannot do anything afterwards. I become short-tempered, withdrawn/dazed, and sleepy. It feels as if I did not sleep at all for days and that everything around me is at a fast pace while I am stuck in slow motion.

Don't get me wrong, I am very fortunate to have such loving and supportive family and friends. I am also very lucky that I don't have to be stuck in a wheelchair or bedridden for the rest of my life. I can still do things. However, I feel as though I am stuck in someone else's body. I have the potential to do so much more than I am doing now, but I am held back by an uncooperative body. Sure, everyone has their own "disability". POTS is just my disability. I am hoping that with more research, more knowledge, and more help from my doctor in early January when I visit him again that I will feel better and be able to achieve more with each and every day. It is just extremely frustrating when I want to do something but I cannot. It will get better in time. I will have a Happy New Year once I see my doctor again :)

November Updates

Well it has been another rough haul. I have been experiencing a lot more fatigue and weakness again. Lots of back and joint pain too. I have relied on my TENS unit on several occasions to get me through classes and social events. I do notice that my symptoms are revolved around the current weather trends (which are all over the place in the Midwest!!) and with stress. I will be going back up to see Dr. Fischer at the Mayo Clinic sometime in the next few months, so hopefully he can give me a reason why my symptoms are all over the place.

I have tried to increase my salt and fluid intake, talk to a counselor, exercise a bit more, rest more, but nothing is really helping my symptoms. It is frustrating because I was doing so well in the spring and summer months this year, but once fall hit, I experienced a lot more POTS symptoms again. In the spring and summer I was able to walk around for well over 4 hours and not get terribly fatigued. Now, I can't do that. I can only do the bare minimum with exercising--only walking to and from class and doing some squats right after I get out of bed.

It is frustrating but I have very supportive friends and family to help get me through the tough days. I hope all of you POTsies out there are as lucky as I am to have such a wonderful support system!

On a More Positive Note

I have experienced some good times along with the painful times since I've been at school again. I have been able to go to an apple orchard and pick apples, pick out pumpkins, go on an inflatable obstacle course, ride on a wagon ride, and go through a corn maze, not to mention cheering at home football games! So on a positive note, there are good times along with the bad. The good times are the ones I focus on the most because I don't want to be dragged down by the pains of P.O.T.S.! I work through them and have fun! Here are some pictures of my latest adventures...

As "Sara the Panther" at a home game!

"Billy the Panther" carrying "Sara the Panther"

At the orchard :)

Right before entering the obstacle course

At the pumpkin patch!
We picked out 2 huge pumpkins and 1 smaller one too!

Updates for October

Well so far this semester at school has been very interesting. I have really fun courses like Biological Psychology and Aging, which I enjoy! As for P.O.T.S., it has been a roller coaster! So many ups and downs with P.O.T.S. while I'm at school. I have been really fatigued since the start of this semester, which is normal due to the fact that I am doing a lot of things. I am involved in 4 clubs and have 5 classes to worry about. Anyone would be fatigued with the amount of work that I do...at least that's what I believe.

With this crazy weather changing from 90 degrees to 50 degrees overnight, I have been experiencing exaggerated symptoms. The fatigue is worse again and so is my back pain and brain fogging and shortness of breath. The brain fogging is at its worse over these last 4-5 weeks. I have been so brain fogged that my studies have been affected. I cannot concentrate on tasks that I need to get done, and I have fallen asleep in numerous classes too. This is something that I have never experienced before. I am one of the top students in all of my classes. I sleep roughly 7-9 hours every night. I shouldn't be falling asleep in class!

Also, when I do go to sleep, I cannot wake up in the mornings. I call it the "Sleeping Beauty" symptom. I cannot wake up even with 5 alarm clocks buzzing. My roommate has to shake me and yell my name for me to wake up at times. I get terrified sometimes when going to sleep because I don't want the "Sleeping Beauty" symptom to occur again. I have missed one class and almost missed an entire shift at work because I couldn't wake up. It is scary. I could understand if I wasn't getting enough sleep and then that occurred, but I am getting enough sleep!

Right now I just feel as though my body is improving in some aspects, but having more troubles in other areas. I am in recovery. It is not fun to NOT feel the improvements yet. I know that I have been feeling better as compared to the last few years. But I want to feel even better than I feel now. I know that day will come soon!

For now, my doctor says that I should drink Gatorade G2 in the mornings when I wake up and do some large muscle exercises like calf raises and bicep curls. He also said that I should exercise more consistently and reach a 30-minute time frame of continuous exercise. I have been working on that and have reached 15 minutes. I'm halfway there! It was also recommended that I check out a yoga class here at school since it is free and so that I can work on my blood flow. I should check out talking with a counselor too so that I can talk about the stresses of living with P.O.T.S. I am not thrilled about this last suggestion, but I am willing to do anything to make myself feel better, so I have an appointment set up for next Tuesday morning.

Until the next post, I will be smiling and laughing as always and improving my health with every step that I take! :)