I've read so much online about Topamax, and it's side effects, so I decided to share my full experience with you. Before I start this journal of my experience with Topamax, I would like to tell you how I got here.
I have suffered from headaches and migraines since I was five years old. I have tried glasses, meds to fight the migraines, tested my allergies, and finally last week I went in for a CT scan.
When my allergy doctor read the results, she told me she was concerned because my ventricles appeared to be full of fluid and swollen. She said I may have hydrocephalus but would need to see a neurologist to confirm.
During my appointment, I shared every single symptom (see my symptoms below) I could think of that could in any way contribute to my migraines. I am not sure if my migraines are the issue or if they are simply a symptom of a bigger issue and that is the quest I am currently on. I want to know if I need to treat the migraines or treat the cause of the migraines.
I am not the type of person that is happy to be put on medication and sent away. I want to know what is happening inside my body. I want personalized care. I want a doctor that isn't interested in masking symptoms with medications but one that is interested in getting to the bottom of what is happening inside this crazy head of mine.
After reading my symptoms (yes I printed them out for the doctor) he recommended that I have an MRI. The neurologist said that CT scans are unreliable and that an MRI would give us a better idea of what we are looking at concerning my swollen ventricles. I am thankful for that, and I think that was a great call on his part. I am also hopeful that the MRI will come back normal. He also ordered A LOT of blood work. I may need to take some juice and a cookie because of all the tests they will be doing. 😉
After ordering those he gave me a prescription for both Topamax and Maxalt to treat the migraines.
Side Note: When I cut and paste this from what I gave the doctor I realized how many typos there were and OMG he must think I'm an idiot! I also told him I am a blogger so I can only imagine what he was thinking. (See lack of focus below)
Symptoms I’ve Been Dealing With:
- Morning headaches that will go away with meds but linger in the background.
- Head pain when bending over or being upside down (hand stands & amusement park rides)
- Tunnel Vision & Spots
- Eye tenderness and sensitivity to natural light
- Left arm and pinky going numb pain
- Retaining water in hands and feet (along with numbness)
- Horrible PMS
- Feet are either freezing or on fire (not all the time)
- Mood swings, anxiety, depression, feelings of indifference (for a two month period Dec-Feb)
- Shoulder and neck pain and tension (for 2 years now and getting worse over time)
- Burning feeling in neck radiating down feels like there is water or air in my neck.
- I feel like my short term memory is not as good as it once was. Forgetting to pick up the kids after school, forgetting work projects, loss of focus.
- Weird noise in my ears. Not so much a ringing, more of a whistle or pulsing.
- My perception is off. I tried glasses, but they give me headaches. Hitting curbs, walking into door frames, coffee tables, and walls. Not full on, but just hitting them with the side of my body or my arm.
- Horrible night vision especially in the rain.
- Toss and turn at night and I have never had that problem until this past year. Waking up tired.
Started as 1-2 times each month would ease off with meds
Increased to 3-5x each month, meds don’t touch them (for about a year now)
1-2 severe migraines each month feels like worst migraine ever (for about a year) usually before period.
Oh and before I start going into the side effects I am experiencing you should also know that I live a low carb lifestyle. I have been on a ketogenic diet for over a year. I no longer monitor how many carbs I eat a day because I don't have to, but I have read that this may be a problem on Topamax, so I plan to try to eat more veggies while I take this medication.
Topamax Day 1 Experience:
I took 50mg at 8 pm (trying to avoid morning fog). By 9 pm I was tired and ready for bed. I didn't go to bed until around 10:30 and it was all I could do to keep my eyes open. Before going to bed, the only thing I noticed was some numbness in my arm and a little tingling. I experience this without the meds, so it didn't bother me.
I had slept for about 45 minutes before I woke up to a leg jerk. I have restless legs in the winter, but this was a little different. My leg (just one) hurt. It was a mild pain, so I tried shifting my weight. Then I tried sleeping on my back and my stomach. I noticed that my lips went numb for a bit which was strange because that has never happened to me (except at the dentist). As I lay on my stomach, I sat there thinking about a blog post I have coming up. I was in pretty deep thought about it until I finally snapped out of it and realized that for the first time in months I was finally focusing on something. Unfortunately, it was when I should have been sleeping, but I think this will pass. I have taken meds like this before that cause me trouble the first few nights and then I'm fine.
I finally gave up and went downstairs to watch a movie. I finally crawled back into bed at 1:30 am and went right to sleep. I woke up at 6 am pretty tired, and here I am at 11:30 am dreading the rest of this day. I'm in that weird, tired space where I'm tired enough to feel unmotivated but not tired enough to go back to sleep.
So for now, I've had some numbness, tingling, restlessness, and drowsiness. Not too bad if you ask me.
The good news:
- No headache this morning
- Ability to focus on something intensely
- My neck and shoulder pain eased off about an hour after I took the Topamax and my muscles don't feel as tight today.
You can read my Topamax Journal Week 1 here