The last 45 days or so have been filled with more revelations than any of the months before. Today is my last day on Topamax, the medication Dr Shukla prescribed for me back in August to help treat my migraines, after a long and temultuous “reign of topamax terror” while on it.
In hindsight, September wasn’t as uneventful as I made it out to be in my last post. At the time, I thought I my body was handling the medication well, but I was slowly falling into a deep depression and was finding myself riddled with more side effects of the Topamax than I was willing to admit. The common side of Topamax (or generically known as Toprimate which is what I was on) include:
- Numbness/Tingling in the extremities
- Taste Change
- Weight Loss
- Difficulty with concentration/Trouble with memory recall
It’s also commonly referred to as “DOPAMAX” as it truly makes you feel as dumb as a box of rocks (like can’t drive because you’re so dumb = unlisted symptom #1) and if you’re not drinking enough water, and I’m talking 80+ oz a day, you’re gonna have bowel movement issues (unlisted symptom #2). What no one tells you (loudly and clearly) is that Topamax can, and often does, alter you mood drastically as it’s used as a mood stabilizer for bipolar patients- something I WISH I was made aware of. I’ve been on mood stabilizers in the past to treat other conditions, and each and every time I’ve been on them, they have thrown me into a deep depression. As the weeks went by, I found myself easy to anger and crying at the drop of a hat. I cried 4-5 days a week with feelings of incompetence, self-pity, worthlessness, and fear.
Every day I never knew whether it would be a good day or a “Dopamax” day. Some days I was perfectly competent and a productive member of society. Other days, getting out of bed because of dizziness, fatigue or numbness was a challenge. By mid-October, I found myself dealing with constipation for weeks to the point where my whole lower abdomen was riddled with pain. A day of barium drinks and CT scans later, we thankfully found no blockages but did find a small kidney stone (unlisted symptom #3). My vision was getting considerably worse (unlisted symptom #4) to the point where reading the computer screen was difficult at best. And in the following week, I found myself having a 4 day “fatigue bender”, my longest yet, where I was too tired to walk from the bed to the couch –> for 4 days straight. I thought I was loosing my mind. Most of all, the dizziness and the headaches really weren’t getting significantly better.
So off to Dr. Shukla I went, just a week after my 3 month follow up, to discuss how we get me out of this clearly unproductive state of being. Off the Topamax was the solution and a referral to the Director of Headache Medicine within his practice, Dr. Assadi, was the next step in my course of treatment. Treatments such as acupuncture, biofeedback, and botox injections that were deemed not necessary 3 months ago are suddenly being brought to the table as possible solutions. All treatments to review with Dr. Assadi, who’s first available appointment was December 9th. UGH… another 8 weeks of waiting? I don’t think so. I called the Dr’s office twice a week for cancellations… which one opened up on November 11th.
Denim+Grace’s November Business Issue launched without a hitch thanks to lots of help from my hubby, Jamie, and our Associate Editor, Katie (she keeps me sane). But the future of Denim+Grace felt so unclear with the physical limitations I was facing due to my vision and fatigue. My appointment with Dr. Assadi didn’t feel all that promising either. After the wrath that Topamax had taken on my body, and the 3+ weeks it would take to ween off to ensure that I didn’t have withdrawal seizures (unlisted symptom #5), I was extremely fearful at trying another oral medication for treatment.
Most don’t know, but typically, migraines are treated preventatively by 1 of 3 types of drug classes: anticonvulsants, antidepressants, beta/calcium blockers. The first two drug classes have a psychological component to them- something I’m now clearly adversarial to because of my recent stint with Topamax. Instead, I was hoping to try more non-traditional and holistic approaches to treatment- anything and everything BUT an oral medication. And if they didn’t work? Then I’d try another medicated treatment. Dr. Assadi wasn’t biting. While I appreciate that she is considered one of the best in her field, I’m not convinced she’s the right doctor for me. She hardly listened to my history with anticonvulsants and antidepressants and sent me home with a prescription for Inderal LA (a beta blocker that I have yet to start taking). She also recommended starting Biofeedback and is making a case for Botox therapy to my insurance company. I’m doing some extensive research on both before leaping in blindly to them.
The Pediatric Ophthalmologist Appointment
November 13th came and it was finally time to meet with the eye specialist. While Dr. Assadi assured me that correcting any vision problems wouldn’t drastically affect my daily symptoms, I was hopeful that Dr. Lavrich would have some concise answers for me. And she did. It’s amazing what can happen when a doctor genuinely understands your struggles and has a true PASSION to help. Like Dr. Shukla (whom I still adore), I feel like Dr. Lavrich is on my team and fighting for me. After a series of general ophthalmology tests to ensure my vision prescription was correct and a patient history, she began testing for the ocular condition Strabismus. She placed a vertical prism bar in front of my right eye and in that instant I felt the physical “on a boat rocking” feeling that I have been describing for months. Literally, she was able to recreate my symptom within me on cue.
As she moved the prism upwards and increased the prism strength, the feeling got worse. I was ecstatic and relieved at the same time.
Finally someone was able to validate the feeling I’ve been having for months; years actually. In that moment, I felt hope.
After testing was complete, it was pretty clear to Dr. Lavrich that I have a condition called Strabismus- or a turning of the eye that causes double vision and tracking issues. In lamen’s terms, my eyes currently do not look at the exact same thing at the same point in sync. It’s hereditary and more than likely something I’ve just compensated for all my life but explains a large part of my struggles and symptoms that I’ve had since childhood. It’s also something that won’t go away but can be corrected over time (liked a pulled muscle) with vision therapy. See the video to see the computer program I now use.
My new daily routine looks like this most mornings, with some radical looking glasses I might add (haha). I’ll continue the therapy daily for about a year and afterwards will continue with maintenance 1-2 days a week for life. The goal? I stop seeing double. I should know whether the treatment is working in or around Christmas and have an 8 week follow up in early January for final diagnosis. The alternative to it being strabismus isn’t something I even want to consider at this moment.
So here’s the medical update over the last 3 months. We’re closing in on 5 months of this new course of diagnoses and treatments, and at this moment I’m not sure that migraines is actually what I have. But I’m keeping the course, and beginning to really rely on God more and more each day to get me through and make his purpose for this part of my journey more clear. Thank you to all of you who have loved on me and supported me for the last several months (and even years)- I’m so incredibly grateful for all of you! Hoping for a fabulous Christmas update!