I Still Smell Smoke, I Can't Feel My Feet, And Soda Has No Fizz...

So, to catch us up to where we left off...3 years ago I started smelling smoke, I finally found a Dr. who dug a little deeper to find answers and a tumor, and then went on a roller coaster ride to remove the tumor, only to  conclude that while it needed to come out, it had nothing to do with the smoke smell.

Two weeks before Christmas, I went to see a neurologist, whose best guess was that some type of headache could be causing the smell. She scheduled an EEG to rule out seizures, and prescribed Topamax (an anti-seizure/migraine medication) daily to see if that helped any. The EEG showed some slowing on the left side of my brain, but they can't pinpoint what might be causing that, no evidence of seizures though.

I started the Topamax, gradually working up to the full dosage as she prescribed and I have never felt worse. This medication is EVIL! I can't sleep, my hair is falling out, my hands and feet tingle like they are asleep about 50% of the time, and soda tastes flat. I had a follow up visit with her on Friday and left more frustrated than I was when I went in. She must be getting huge kickbacks to prescribe Topamax because she pretty much told me that it wasn't causing the majority of my side effects, that it was coincidental, just like the increase in smoke incidents and headaches since starting the drug were coincidental, too.

Fortunately, I saw my ENT right after her and he is still the most awesome Dr. I've ever had. He's not satisfied with her answers and looked up side effects right there in his office to confirm that I am on track and the medication is indeed responsible. I think that even though we knew it was a long shot, he was hoping that when he removed the tumor, the smoke smell and headaches would go away. It really is his mission to see me well. He is researching my condition (phantosmia) and looking for answers.

So that is where we are today. I'll keep you updated.


retdairyqueen said...

Sometimes the side effects are way worse than your illness
Thinking og of you and hope you get answers soon

Sarah Shumate said...

I still get angry when I think about a medication I was prescribed almost a decade ago. It changed my life, and not in a good way. There are many, many others like me out there who also took this drug and have similar long-term side effects, yet doctors are still prescribing it and saying the medication can't have been the cause of our issues....though none of us had any of these before. It's so frustrating for me and has actually made me wary of all doctors and medication. I will spend the rest of my life wishing I'd done more research before taking that drug. Anyway, I'm glad you've at least got one doctor who seems to have your best interests at heart. I hope that he can eventually find the root cause and a cure for you. Have you quit the Topamax yet?