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.

Migraines

Recently, I have struggled with HORRIBLE migraines. In fact, I'm not sure the word "migraine" covers it. It starts above my eyes and works its way to the base of my skull and c-spine. The pressure in my head is enormous. I feel like my head is in a vice-like grip. I've often had headaches associated with my infusion, but these are different fro my infusion headaches. At first, they started 1 - 2 times a week. This was annoying, but I could live with it. I began to be alarmed when I started having visual disturbances with them. I'd get these black spots that would obscure my vision. Sometimes it would be so bad that my vision would go completely black for moments of time. I'd also have problems with positional changes. If I moved my head too quickly (bent down), I would get a stabbing pain through my head and my vision would go black for a few minutes. I consulted my doctor and she gave me Gabapentin. Gradually, this got worse. In stead of 1 - 2 times a week, I was having them 3 - 4 times a week. Last week I was finally able to see my doctor again and told her I needed a referral to a neurologist. Not only had the frequency and severity of these headaches increased, but at times I would black out completely. I'd find myself on the floor, not knowing how I got there. She increased the Gabapentin and gave me a referral to see the neurologist.

This past week, I had the worst migraine/headache I've ever had. After six days I began to get concerned. Each day it got worse, with the pain radiating down my spine. The pain was unbelievable. My skull felt like ti was going to crack open, and honestly, I would have welcomed that. I tried to get into to see the neurologist, but knew there was no way they could get me in for a new-patient visit in the next few days. They hadn't even processed my referral yet. Though my doctor had made the referral, the neurologist's office kept telling me they never received it. Then, they told me they needed notes before they could make me an appointment. Finally, I was unable to take the pain anymore. I was also not able to keep anything down (liquids or solids) even with nausea medication. My friends urged me to do something as a migraine lasing this long was severe and needed to be checked out. So, off to the ER I went. Thank goodness at the ER they were able to give me IV pain and nausea medication that helped. They also did a spinal tap (lumbar puncture). Though they did the LP to see if I had an infection that was causing the pain, the LP helped relieve the pressure in my head. In the past day or so, as my body has replaced the lost spinal fluid, the pressure in my head has begun to build and slowly the headache has come back. I hope this is not going to be a chronic thing. I cannot have an LP every week or so to relieve the pressure in my head each time it builds. The neurologists office finally called back yesterday. The ER sent them a referral, so I can now make an appointment. I hope I can get an appointment soon and get some answers.