Migraines Update

So as you know, I have been suffering from horrible migraines (See post Migraines). Well, back in August, they got to be so bad that they were lasting 6 days or more and I was blacking out. I eventually ended up in the ER. My PCP finally gave me a referral to see a neurologist, but when I called to get an appointment, despite everything that I was going through, especially the blacking out, the soonest appointment they could give me was the end of November. Well things have not improved, but finally being fed up, I decided to try and see if maybe I could get into Baystate neurology. I had seen one of the neurologists there a year and a half ago when I was having problems with severe dizziness. The dizziness was so bad that I could not even walk. Moving at all gave me such vertigo that I would be sick. Thankfully, they were able to figure it out. It was a problem with my inner ear. They sent me for vestibular therapy and it helped tremendously. So, I had hopes that they would be able to help now too. It was worth a shot at least.

I called the office and was told that they did not have any openings until January, but once I explained my symptoms, the receptionist agreed that I needed to be seen as soon as possible. She assured me that she would have someone call me back within the next day or so. True to her word, she called back two days later. She had found an opening in two weeks. She also said that she would put me on a cancellation list, just in case something came up sooner. Boy was I surprised and thankful. A few days later, she called again to say that the doctor I was supposed to see had a cancellation for the next day, did I want to take it. Of course I said yes. The sooner I got to the root of my problem, the better, in my opinion. I hadn't expected an appointment in two weeks, never mind less than a week after initially calling.

It was the same doctor that I saw before. She took a full history of the migraines, their patterns, and things I experienced while having them. I told her not only about the debilitating pain, but the vision disturbances, loss of vision, and blacking out. I was quite impressed that she actually took me seriously. Maybe I'm so used to not being taken seriously that when someone does it amazes me. She started me on Verapamil, which is a calcium-channel blocker. She also put me on a Medrol pack (low-dose Prednisone) and muscle relaxer. She is also having me do an EEG, just to rule out whether these "black-outs" are really seizures. So I have that on Thursday. Her idea is that for some reason the blood flow to my brain is being restricted to the point where I eventually black-out. For these types of migraines, preventative medications, such as calcium-channel blockers or beta blockers, can be used. I cannot take beta blockers because of my lung issues. She also wants to make sure I am not having rebound headaches, which can happen when you take medication like Excedrin or Fioricet to treat the migraine. Though I do not take medication unless things get really bad. Not nearly enough  to have these migraines be rebound headaches, but I want to make sure everything is ruled out properly. So for now, I am trying not to take anything at all. Of course this is not always possible because they get so debilitating. If the EEG doesn't show anything, and I still am blacking-out, then she will do an MRI.

Although the medication has not made a difference as of yet, the migraines are just as severe, I have hope that we will eventually find the right "cocktail" of medications.

A Full-time Job

People don't understand why even though I do not have a job, I am so tired and do not have any time. "But you don't work," they tell me. No, I do not work a "traditional" job. I do not go into the office and work; however, I do work. My office is my house. My most important piece of office equipment, my telephone. What is my job, you ask me? Being a patient. My job is thankless. It has no hours. I do not get compensation, sick time (well it's all sick time isn't it), or vacation time. I do not get a day or week off. This is my life and there is no escaping it. Although most of my work is done between the hours of 8am and 5pm as this is when doctor's offices and insurance companies are open, by no means does this mean my job is done.

What exactly do I do? Well, I make and go to appointments, and advocate for myself and my care with doctors. At times, this involves yelling, screaming, and hollering, especially when dealing with a particularly difficult and obstinate doctor, who do not want to provide adequate medical care, and refuse to acknowledge that it is my body and that reading a case study in a textbook back in medical school does not qualify as knowing about PIDD or being an expert (see post Living in Pain).

This in itself would be extremely time consuming and exhausting, but my job doesn't end there. The majority of my job entails dealing with my insurance company, getting the proper referrals, authorizations, and pre-authorizations for my various doctors, medical procedures, treatments, and medications. This would be bad enough, but I also must fight with my insurance company for the things that they've refused to pay for which they should have. I must act as a liaison between the medical billing specialists and my insurance company because unless it is billed properly, my insurance company won't pay and then I'll be stuck with a $2,0000 medical bill. I also must deal with the pharmacy to ensure that I get the proper medication. Some may think this is easy - just go and pick up your prescriptions. Not quite. Often I must go and make sure they inputted the insurance correctly, so that once again, I don't end up with huge co-pays. I have become best friends with my pharmacist.

So, no, I do not have a traditional job in which I go to an office and work, but this does not mean that I do not work.