Concussion Update 9-27-10

Dan and I saw Dr. Leddy this morning, the concussion research doctor. Although there is no cure for Post Concussion Syndrome (PCS), he does give us hope and is willing to work with us in a caring way. We are so fortunate that he lives in Buffalo and does his research here, because he is very interested and invested in me being able to be a part of his treatment plan.

Once again this month I had 12 migraines. This number has been consistent throughout the 17 months that I have had PCS. It ends up being on average 3 a week. The migraines are preventing me from the treadmill treatment that Dr. Leddy's research study prescribes.

The results from my endoscopy came in yesterday. The biopsies were negative – yeay! Dr. Leddy seems pretty confident that the gastritis (inflammation) they found in my GI tract is from the migraine medication I've been taking for the last 17 months. We are going to switch from Treximet (which has Naproxen in it) to Maxalt. Maxalt is another type of migraine medication that I can take when I start getting a migraine to help it go away, but it doesn't have Naproxen in it, so it should be easier on my stomach.

I had been trying for a few months to come off a daily medication I was on called Amitriptyline. It was prescribed to me in the beginning of all this to help with sleep, headaches, and pain. We are not sure if it has ever worked at all, because my sleep hasn't been restful or consistent since the head injury. I stopped it 11 days ago, but the withdrawal from it is very difficult.

The symptoms from the withdrawal include: allergy-type symptoms, stomach issues, paranoia, hot and cold, and just a general poor feeling. They said it should take 3-4 weeks for it to fully come out of my system and I just have to tough it out during this time. It's pretty horrible, but when it's done, we'll be able to reevaluate how I feel. Fatigue is a side effect from the Amitriptyline, so without it I may become more clear and sharp. Let's hope and pray that my health might improve without the drug in my system.

Thank you again for all your support. Dan and I continue our journey toward humility, and you have all made it so much easier to get there. We have gotten meals from some of you, we have had our house cleaned, we have gotten cards, and there has been a great general response of love and support. We know it's been a long time that I've been sick and it speaks volumes of your love and endurance that you have stuck by us and continue to help us through this.

We continue to appreciate any help that people are willing to give. It's been easier since the kids started school, so they are in good shape. Meals are always appreciated, and just knowing that you are interested in what's going on and are here for us means the world.

Amitriptyline Withdrawal - UPDATES day 7-day 32

I'm on day 7. It's no picnic still.

My runny nose has subsided for the most part. It's still there a bit, but not as bad as it's been.

I think things have run towards my stomach now. I am having some stomach issues and they aren't too bad, but definitely there.

I also have this feeling of severe drunkenness in regards to my balance, the room spinning, feeling fatigued. It feels like I can't be on my feet for longer than 10-20 minutes and I'm feeling disoriented. I also feel like I can't remember a lot and I'm having trouble finding the right word for things.

I will keep posting through my withdrawal. It is scary to not know what to expect and I hope I can help others who are trying to get through this at some point.

I see Dr. Leddy (concussion doctor) on Monday, and we'll go from there in regards to my next steps.

Day 10 - I thought I might be through the worst, but the runny/stuffy/itchy nose and eyes started up again yesterday.

I'm having trouble moving past this in so many ways. I feel stuck. Physically, emotionally stuck. It's frustrating and it makes me just want to go numb.

My husband is being perfect. He's supportive without being overbearing. I have a great relationship with God. It's just a weird place to be. I want to move past this feeling of "stuck".

I slept for 5-6 hours last night, and about the same the night before, so I'm sure that's not helping matters.

Doctor tomorrow.

Day 14 - It's getting easier every day. I still have a runny nose from time to time. My stomach has been bothering me a good amount. It's not constant anymore.

I'm not having as much trouble sleeping as I thought I would. I've been consistently waking up once a night. I'm waking up with a hot sweaty flash.

It's hard to stay asleep in the morning when I wake up from a noise or something. I've just been getting up instead of trying to fall back to sleep.

I try to lay down during the day a few times to rest, and that's been helping things.

Day 17 - Had another relapse of withdrawal symptoms yesterday and today. I'd pay good money for my body to start producing natural antihistamine again!

It's tough to do anything when your nose is running like a faucet. I haven't been getting the hot flashes for the last few days. My stomach is settling down. I think things are getting better day by day.

It's hard to imagine while I'm in the middle of all this that I'll come out of it. I know the doctors said 3-4 weeks and I'm not even at 3 weeks yet, but it seems like it's been such a long time.

On the plus side, I've been able to string some consistent days together on the treadmill. I need to make sure I keep hydrating and eating to get through this withdrawal.

DAY 30 - Oct 16:

It's Saturday, the day I typically go through a relapse of withdrawal symptoms. I have a little sniffle, but it's not bad. I don't know if I'll relapse today, but I'm hoping that I don't. I didn't have any problems last night, and I usually start the night before.

I am still having a little bit of trouble with waking up in the night. I have to force my self to stay in bed and believe I'll get back to sleep. At first, I feel so wide awake. My nose gets runny, my throat is dry. It feels like I won't get back to sleep and I should just get up. If I make sure to stay in bed and keep my eyes closed, I can get back to sleep sometimes. Usually, I use that time to beg God to get me back to sleep. Today I slept until 9:30, which is pretty good for me!

If today I'm relapse free, I will feel like the withdrawal is over. So, for those of you who are discouraged and feel like it'll never end, HANG IN THERE! You can do it! There have been several times that I felt like I wanted to give up and get back on the meds. I am so glad that I've stuck it out. 30 days is a long time when you are going through these horrible feelings day after day.

I'll keep posting about the recovery from my Amitriptyline withdrawal, and let you guys know if I relapse today.

DAY 32 - Oct 18

Ok, I was wrong. I just relapsed last night again. I started the runny nose and all that comes with it along with a pretty bad migraine. I took a Maxalt and fell asleep eventually. I woke up just as bad as the last time. Runny nose, sneezing, watery eyes..... ugh! It's really rough.

I'll keep you posted as to how long it lasts for.... :-(

Amitriptyline (Elavil) Withdrawal

It's been a few months since I've been weaning off the Amitriptyline that I've been taking for a blanket treatment towards my PCS. The theory is that in low doses it has been shown to help with 3 symptoms: sleep dysfunction, headache, and pain.

When I was first diagnosed with the PCS by Dr. Kang from Dent Neurology, he started me on 10 mg of Amitriptyline/night. He first gave it to me because I wasn't sleeping at night and when I did sleep I had very vivid and disturbing dreams.

When it was discovered that I had herniated discs in my neck, the Amitriptyline was gradually increased to 75 mg/night. When my neck became better, I wanted to try to reduce the amount of medication I was taking and eventually try to see if I could come off the Amitriptyline altogether.

I decreased to 50 mg the first drop, and then dropped in 10 mg increments every two weeks. Every drop was very difficult for me. I've had every side effect for every medication I've been on, and it seems that I am also sensitive to changes in medication.

The symptoms are always allergy/cold type symptoms with a low grade fever and sleep disturbance. It also feels as if I'm drunk. There is dizziness, vertigo, radical temperature changes, increased light/sound sensitivity, itchy/watery eyes, itchy/runny nose, nausea, headache. It feels really crappy, and scared me the first few times.

I just did my final drop 4 days ago. This withdrawal is the worst so far. I feel as if something is seriously wrong with me. It's scary and very difficult. I suppose there are psychological symptoms like paranoia with it too. It's not fun at all, and it makes me want to get right back on the medication, even though I'm just trying to get off it.

I hope it is not all for nothing. There could be benefits from the Amitriptyline that I'm not seeing, because I've been on it for 16 months.

I know there are negative side effects that come along with it. My fatigue has been the worst symptom of mine lately and the doctors and I discussed this being related to the Amitriptyline. If getting rid of it can help my fatigue go away or be reduced, I might have a shot at being able to stand more activity and going further through the research study.

I see Dr. Leddy in a week, and I'm anxious to get past this horrible withdrawal. I know how scary it's been stepping down off of this and I hope this post can be helpful to others going through the same thing.

I haven't seen much research online about it, other than it being associated with mental disorders in much higher dosages. I know that you are not supposed to stop it altogether, and have to step down very gradually. I didn't think that I would be so affected by the withdrawal stepping down in such small amounts.

Pure joy

This month has had its ups and downs. Acupuncture hasn't helped anything, and the doctor doing it has said she doesn't want to waste my money anymore if it isn't helping. I am taking a break from it for know, since it isn't helping anything. I tried 3 visits with her doing different things, and she doesn't think she is able to help me at this point. I was pretty discouraged by that, and feel at this point as if there really is no medical answer for the migraines I'm having 2-3 times a week.

In the meantime, this stomach issue has been bothering me ever since I had my gallbladder out in April of 2008. I was in the emergency room last month with really bad upper GI pain that caused my blood pressure to go up, my heart to race, and me to pass out. We thought maybe it was my heart, but I was cleared and referred to a GI specialist. I saw her on Wednesday, 9/8 and her next step is to give me an endoscopy. I go for that on Wednesday, 9/15 - this coming week.

Please pray that this procedure will go smoothly. I will be put under general anesthesia, but it's a short procedure. I will be out for probably an hour at the most. Please pray that the doctor doing the scope will find something conclusive that is causing my pain and that there will be a way to fix it. There are several possibilities they are looking for including: ulcers related to the migraine medicine I've been on for over a year, some sort of complication from the gallbladder surgery where a valve isn't able to work properly, or any other visible issue through the scope. If they find out it is a dysfunction in the valves, I'll have another endoscopic procedure they can do to figure out what the dysfunction is.

All of this, coupled with the head injury stuff has been discouraging. I also had a cold this past week and a stomach bug, so it's been dark. I know that God will not give me more than I can handle, and that I'm stronger because of all of this. I know He's with me and walking along side of me. I can't imagine going through this without Him.

I'll see how this GI stuff goes, and I see Dr. Leddy (UB research doctor) at the end of the month to discuss the next steps in my concussion treatment plan. For now, it's just rest/sleep as much as I can, limit everything I do, and continue to take the same medication.

My journey towards humility is going forward slowly but surely. I'm able to accept help more and more each day. It's good being honest about what's going on with me. Especially when it allows people to know how to help and what to pray for.

James 1: 2-4 Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

Back on the horse... er, um... treadmill

I had a dentist appointment yesterday. I have been on "bedrest" (couch-rest really) for the past 3 weeks and going to a dentist appointment and lunch wiped me out. It's really becoming clear that I need to use the energy I have to get on the treadmill every day. That's the whole point of me doing nothing else. I have to try.

I got on the treadmill today. I could only go for 50 seconds and now I have a headache, but I tried. I'm going to try again tomorrow as long as my migraine is in check.

I had my 3rd acupuncture appointment on Tuesday. This one hurt a little bit. The doctor said that she doesn't see any improvement yet, and we are taking a break for a few weeks. It would be nice if it were helping, but I don't think it is.

It's really my physiology that's messed up. Like clockwork, I'm getting 2-3 migraines a week. I can sit around and do nothing or aggravate my symptoms by being active, but I still get the migraines in the same way at the same times.

This is really proving Dr. Leddy's research. My brain and my circulation are off and not working together properly. It's so amazing that he's able to figure this stuff out. Hopefully with the rest from everything else in life, I can concentrate on doing the treadmill and maybe it will get my system back to what it needs to be.

I'm keeping track of my symptoms and my treadmill activity and I will keep everyone posted. I think the key to this research study is the ability to concentrate fully on rehabilitation without using your energy on other things.