Monday, August 30, 2010


We have tried all the prophylactic migraine treatments that we can think of, but the side effects hurt me more than the benefits might help.

Topamax (Topirimate) gave me extreme fatigue that glues me down and makes me feel as if gravity is working against me.

Propranalol made me so depressed that I was curled up in a ball crying the week before my birthday. My birthday (ask anyone who knows me) is the greatest month of my year for me usually. They took me off it before I started having serious thoughts of suicide.

There isn't much else out there being used to prevent migraines. Treximet helps when I get a migraine (as long as I take it before it's too late). I am prone to complex migraines that make parts of my body stop working. I have had complex migraines that made stroke-like numbness/weakness appear in one side of my body or the other. I have had central apnea (your brain stops telling your lungs to breathe while you are awake and asleep) from a migraine.

Bottom line... I should not let myself get a migraine.

Maybe I'm just sensitive to medications, but they aren't working for me. I'm trying acupuncture. I have my third session tomorrow. I haven't noticed anything positive yet, but I'm giving it a chance.

It doesn't hurt. I feel really tired after and have some weird tingling/numbness/weakness in my body. I have a weird craving for wonton soup after I'm done. I know that when she puts the pins in, it gives you this weird warm rushing feeling in your body. So... It's doing something, I'm just not seeing anything yet.

I'll keep everyone posted.

Where I am.... PRIDE

I'm dealing with my pride right now. James 5 has some amazing verses about healing and faith and prayer. Read through the whole thing. There are some exciting parts, but there is also some work involved.

I'm trying to put my pride away and get help. It is so hard! I know that if the situation were reversed, I'd be there in an instant to help a friend or a family member going through this. Why am I trying to rob them of their blessings and gifts they want to give me?

I'm putting away my pride. I've written down every symptom and I'm asking people to take one thing and pray about it daily. I have 2 people signed up and I'm working on asking certain people to take certain things.

I'm not the only one with pride, though. I have to get help for my family and I, but it's hard to tell your husband to put his pride away too. God wants us to be honest, humble, and to lean on each other as a family. I'm trying to give this up to Him so that He can heal me.

This is so much easier said than done.

Dan has taken every task away from me. It's good. It's hard, but it's good. He is handling the cooking, cleaning, decision making, everything. I am to just sit and rest and get better. It's hard to watch him struggle through this, but he is so supportive and he still has energy left to tell me I'm beautiful and he loves me.

I can't imagine being in his position after going through this for 15 months. I know I would be the same way as him, but it's tough to be on this end of it... watching him do EVERYTHING!

I am glad to be giving up my pride, and I know it will help.

UB Research Study Information

Here is the website for University at Buffalo's Concussion Clinic run by Dr. Leddy. I've been in this program since April and he really has a good understanding of PCS. I don't know if he can help you, but I know that my involvement in the program is very helpful for me.

Ok.... I think i'm really back blogging now

I'm sorry about not writing for a while. I go through some big ups and downs. I wanted to cut off my media for a while and try to focus on getting better.

I'm still suffering from PCS. I understand things a lot better now and feel like I have a better grip on what's happening to me. It doesn't make it any easier most days.

I'm posting the updates I had sent on my prayer chain at church. This should get everyone up to speed on my condition:

(8/11/10)Hey Guys, I guess I'm due to give everyone an update, it's definitely been awhile. Sorry this is so long, but I wanted to be clear and let you guys know what's going on. I still have many of the symptoms that I started with back in June of last year when I got that first concussion.

After the second concussion in October, they told me I had herniated discs in my neck. The neck issue was keeping me from the treatment that I am trying to receive in the UB research study with Dr. Leddy. My neck has been better since the last update I gave everyone.

I was feeling a whole lot better in terms of neck pain, and we thought that I would be able to get on the treadmill for the treatment, but unfortunately the other concussion symptoms have not been resolved yet.

We have tried a few medications that are supposed to prevent migraines, because I am having on average three migraines a week. I get all the other concussion symptoms daily still (nausea, unsteadiness, low-level headaches, sensitivity to light/sound, memory issues, fatigue) and they all increase as my activity increases throughout the day.

If I stay still in a quiet environment, I can keep things under control. Most days, life doesn't really allow for that for anyone, so I end up with a pretty rough day. The medications out there to control migraines give me side effects that are worse than the benefits. We have been looking for alternative treatments, so that I am able to continue with Dr. Leddy's research treatment.

Today I had my first acupuncture appointment. I'm optimistic, but I'm also being realistic. It's hard to keep getting my hopes up after 15 months of this! I know that God has reasons for everything, and I have seen so many great things come out of me being like this.

I'm really growing weary, though. I humbly ask you for your prayers. I'm restless, tired, and I really just want to be better. I still can't drive, work, keep up with the housework, play with my kids.... Anything that I choose to do, I'm choosing with the knowledge that my symptoms will increase. It's hard to choose anything, knowing I'm going to be worse after it's over.

Thanks for your patience, your persistence, and your prayers! I love you guys for not giving up on me, even though I've been a ghost for the last 15 months.

(From 05/21/10)
Hi Everyone, We've had some ups and downs with regards to what's going on with me. A few weeks ago, I felt like I was all better. I guess since I had felt so bad for so many months that any change was significant. I still have the effects of the concussion, though.

The doctors think that the improvement has been because of my physical therapy for the herniated discs in my neck. I don't wake up with all my symptoms anymore, but I still get them throughout the day. It's a little frustrating, but I'm still grateful to God for the improvement.

I had my second exercise test Monday evening. I was able to go for 4 minutes on the treadmill while inhaling 50% CO2 the last test, and this test I was able to go for 7 minutes and 23 seconds. This is an improvement for sure, and I'm excited about that. The test has left me feeling pretty rundown this entire week. Please pray that my body will continue to heal, so that I can return to my new "normal."

I'm still in the research study, and the doctors seem excited that they can focus on the head injury now, and that my neck problem is under control. I still have to continue my physical therapy to keep strengthening my neck. There are some other issues the doctors are looking at as well.

I have a problem with the oxygen level in my blood. It's normal for us to have 99%-100% oxygen in our blood at all times. My level drops down in the 70's and 80's occasionally. They are trying to figure that out, and it might be related to why my brain won't heal.

Sorry this is so long, I know I haven't sent out an update in a while. Thank you guys so much for praying for me and my family. It'll be a year on June 7th since this all started. It's wearing on us all, but we really appreciate the love and support from our church family! Love, Kate

(From 04/01/10)
I had an extensive exercise test Tuesday night that took about 2 hours. I was hooked up to monitoring systems and asked to breathe into a tube that had 50% Oxygen and 50% Carbon Dioxide for 8 minutes. It was supposed to make my body act as if I was working out at a high level. I still had to breathe into the tube, and I had to walk on a treadmill at increasing incline until I felt as if I couldn't do it anymore. I was able to go for almost 8 minutes on that.

They said that a person who is getting enough blood flow to their brain should be able to go for 30 minutes. Thursday night I'm going to Buff Gen to do a Functional MRI. The test is 2 hours in the MRI machine. I'll be given simple tasks to do while in the machine and they will view how my brain is working (or not working) during the various tests. I was told it will involve a wide array of things from arithmetic to motor skills.

I also am continuing my physical therapy at UB Sports Medicine and Neuro, working to resolve the herniated discs in my neck. He's using traction, stretching, nerve/deep tissue massage, posture improvement, and some strengthening exercises. It's only been a week, so I'm not sure how it's working.

I have a lot of faith in these guys- they really seem to get it and know what they are doing. The test last night was pretty rough on my system, but I'm so excited that I'm able to be a part of this study! No one else in the world has access to this kind of treatment.

It's pretty amazing to see how God's working in my life through all of this. Thank you so much for all your love and support. Please pray with me that I'll be as comfortable as possible during the testing and that the results will be helpful for this study and my health improvement. Love, Kate

(From 03/23/10) Hi Everyone! I just wanted to let you know that Dr. Leddy from UB accepted me into his concussion research study. I'm so excited that out of all the people with concussions, I'm in a position to receive this kind of treatment! I've attached some of the articles about his research and his ideas to heal concussions. I'll be working with the same staff members that have helped rehabilitate professional athletes that have had several concussions like me.

I'll also be doing my physical therapy with the staff at UB, so everything can be coordinated. I'm really optimistic about this study, but I believe that only God can make me better. Please pray with me that He will work through this program to help make me better. It's been almost 10 months since the first concussion, and it's starting to really wear on me. I can't wait to get better! Thanks! Love, Kate