This is my first real health update in awhile, so bear with me.
I have been diagnosed with status migrainosus and chronic migraine. I've not had much relief from these unrelenting brain squishers since they came on in late June. I've tried many medications and therapies, and not much has helped me so far.
Back in November, I had occipital nerve and some facial nerve blocks done, which worked tremendously. They would wear off about every week to two weeks, and then I would have them repeated (as often as I could). At an appt with neuro man, I discussed the possibility of severing the nerves to help relieve the migraines. When nerve blocks continually provide relief, that's often a good choice in the long run. Neuro man thought that was a good idea, and set me up with an appointment with the nearest pain specialty clinic.
Fast forward a few days. I got a call from the clinic to set up my appointment. The receptionist told me that my insurance would only cover me under the branch of the clinic that is almost 2 hours away from me (the one I was supposed to go to is only about 45 min away) and that I had to see this specific doctor because he works with migraines. Okay, fine whatever, whatever.
Appointment time shows up. Doctor briefly went over my medical history, did minimal neuro exam, and asked me what has and hasn't worked. I explained to him that I've had the nerve blocks, which he said I can't have any more of, because I've had way too many. Apparently, it’s only recommended that a patient gets 1-2 nerve blocks a year. Within a three month period, I had had 5-6. He prescribed me gabapentin, and told me that I should see how that worked. He also told me that I needed to do biofeedback therapy (training my body to get rid of migraines) and cognitive behavioral therapy (fancy words for talking to a therapist). He asked me about my cancer, and immediately after suggested the CBT. I was pretty upset. No long term plans for me were discussed, I was given my 15 day prescription and out I went. 2 hour trip for 15 minutes of his time.
15 days were up, gabapentin did nothing for me. I had another appointment set up, this time at the clinic closest to me with a different doctor. Turns out, the whole insurance thing wasn't true, I could go to either place, and the doctor I saw wasn't even the one I was intended to see. I found out the doctor I was supposed to have seen had actually worked in my town for many years, so I was excited to meet him and actually make progress.
The day before my appointment rolled around, and I got a phone call. I was in a migraine coma so the call went to voicemail. It was the receptionist from the pain clinic calling to tell me that I was having nerve blocks done. She sounded like she had no idea what she was talking about because she had to ask someone near her for the directions of what I was supposed to do the day of. I woke up after business hours, so I didn't have a chance to call back and ask what was happening. The other doctor never mentioned that, and he had specifically told me that I couldn't have any more nerve blocks. I decided not to get worked up over it and planned on having them done the next day. I thought maybe if they were done at this specialty place, they would be more effective.
Now in the car on the way to my appointment: another phone call, receptionist again. She said the doctor wasn’t sure I should have the appointment because there was a chance the gabapentin didn’t have enough time to work. I explained my prescription was over, and that I was already nearly there. She sighed and said “Well, okay, I guess we can keep your appointment.”
I got to the office, filled out procedural paperwork, and got taken to the doctor’s office. Oddly enough, I had the same nurse I had at the office 2 hours away. That was semi comforting, because I thought that perhaps she’d be able to relay to the doctor how badly I have been hurting, what all has happened and that the medications haven’t worked. Immediately she told me that I wasn’t having nerve blocks done. She also told me the doctor was probably going to put me on a higher dose of gabapentin. I was so confused. Why did they call me the day before, saying I was going to have nerve blocks done? Why didn’t they just say that I wasn’t having them done when I got to the front desk? Why did I have to fill out all the paperwork? How would she know what the doctor was going to do?
This is the part that to this day (almost two months later) still chaps my glowing white ass. Doctor comes in, with cap, mask, and dirty gloves still on from the procedure he just came out of and immediately starts yelling at me. Such fantastic things were said as:
There’s really nothing me or anyone else can do for you...
It’s ridiculous how many times you’ve been seen for these migraines...
It’s borderline harassment how much you’ve been contacting doctors for this. We have lives too, you know?!
You haven’t even given the gabapentin long enough to work, so how do you possibly expect to see a difference?!
I was absolutely dumbfounded. I had no idea what he was talking about. Because I’ve been so fatigued/sound sensitive I was having my mom call my neuro about setting up my appts, refilling Rxs. That’s it. What the hell did he mean by I’ve been ‘harassing’ my doctors? I have seen print outs of my records, there’s nothing remotely unflattering about me in them. Even if I haven’t seen them, my neuro and I get along really, really well. I know he wouldn’t say anything negative about me. Why would this doctor I have never met before be so rude to me?
Just like the nurse said, all he did was up my gabapentin prescription and put me on it for longer. He never apologized for yelling at me after I explained that I was only put on gaba for 15 days, and the other doctor never explained that I needed to take it for at least a month. He also did a neuro exam on me STILL WEARING HIS DIRTY GLOVES.
Needless to say, I sobbed like a little bitch in the car on the way home. Of course, nothing was accomplished, again. The doctor was so mean to me that I dreaded ever going back. How could I look him in the eye when he thought such awful things about me, and clearly wasn’t afraid of telling me so? I was also pretty upset with myself, for not standing up to him. I never asked how he got off on saying such awful things about me, why he would say he (and anyone else) couldn’t help me, why he would freakin’ wear dirty gloves into an appt with a new patient AND TOUCH THEM, and tell him the other doctor only put me on gaba for 15 days. I didn’t want to cause any more of an issue, and certainly didn’t want him yelling at me any more.
I started the higher dose of gabapentin. Mind you, the doctor upped it to 3 times what I was already taking (after I had increased it three times by the end of the 15 days). The first few days were, pardon my Swahili, fucking awful. I felt like I was going to fall over, even when sitting or laying down. If I was up walking around, I felt drunk. I felt like I had electric static in my head and I was nauseous to the point of throwing up and not being able to eat. Fortunately, after a couple weeks, that passed.
I’ll update you kids more at a later time.
