Concussion Clinic Appointment Today

Well... Dr. Leddy used the words "turned the corner" today. The appointment was very encouraging. My treadmill numbers have been climbing steadily. I actually went for 38 minutes and 40 seconds last night! The key is not the amount of time spent on the treadmill, though, but my tolerance to symptoms when my heart rate increases. The plan now is for me to go 20 minutes a day (if I can) at the same low speed and no incline and record the highest my heart rate goes. Up until now, I've been just going until my heart rate reaches above 115 and then stopping before I aggravate my symptoms.

So, with this new plan, I should see my maximum heart rate decrease over the next month while I do my 20 minutes on the treadmill. The point is to push the heart rate that I start to show symptoms at. When I see him again in a month, we will reevaluate and see if we can increase the intensity. He said it should be a slow progression for me and I can't push it.

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.

Acupuncture

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.

found great message board

I found a great message board that seems to be completely dedicated to Post Concussion Syndrome! I have just submitted my first post on Neurotalk, and I am so happy to have found it! I really want to dedicate this blog to finding help for people like me who have wavered and searched for information on this crazy thing. It's tough to find any support, treatments, or hope!

I also just remembered a symptom worth mentioning. I only seem to lose the words I want to say while I'm on the phone or have already reached my limit. I think the phone conversation is a stressful scenario for me. I feel like I have to be "on" while talking to someone over the phone. Emailing or Facebooking is so much easier for me, because I can compose my thoughts and fix any silly mistakes that the PCS gives me.

I can't wait to see if I can find a place in this new community! The little improvements to my poor quality of life are so exciting!

Symptoms Right Now:
I have "pins and needles" in the toes on both feet
Neck tightness/pain/cramping
Headache in the back of my head (getting worse- thinking about a Treximet)
Light nausea
Unsteadiness
Slow thinking
Fatigue, but can't sleep b/c of Nuvigil
My eyesight is doing that weird slow motion thing.