Update Monday

I haven't had a migraine since Monday, September 27! It's an amazing feeling to go a whole week without one! Please keep up the prayers for my migraines to stay away. I was able to get on the treadmill 7 days so far for 2 minutes! I'm so encouraged, but please don't stop praying.

Even if the migraines stay away and I'm still able to get on the treadmill consistently, Dr. Leddy believes that it could take 6 months to a year before I am able to have a recovery through this program (if at all). I have to try to make sure that I don't push the activity and focus all my energy on letting my brain heal and being able to get on the treadmill daily.

The withdrawal symptoms are getting better. This last relapse I had Friday-Sunday was the shortest one and was under control by this morning. Please pray that I won't continue to have these rough relapses of withdrawal symptoms. I'm falling asleep pretty well and only waking up once or twice during the night.

This spot of light in the recent darkness is shining so brightly for me. It's great to see some hope.

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.