Hope

That’s what I received today when I went to see my Neurologist – HOPE! For the first time in my life, I heard something that gave me hope about my medical problems. I’m used to receiving the bad news, being topped off with the worst news – that my medical problem can’t be cured, only managed.

I was sent to a Neurologist by my family doctor. It’s not the first time I’ve ever seen a neurologist. In fact, I’ve seen several since 1992. At first, it was because of the Meniere’s Disease. They wanted to make sure there weren’t any neurological issues (tumors, etc.) causing the vertigo. Then, after my Son was born, and the migraines intensified (I’d had some prior to then, but nothing life-altering), I was again sent to see a Neurologist. Each time, nothing was found, and we were no closer to an answer.

Today, however, was different. The doctor asked me the usual barrage of questions. How often do the migraines occur? 1 – 2 times a week on average (sometimes I’ll go 2 weeks without one, then get hit with 2 in a row). The medication I’m currently taking, how did that change the frequency? I went from 4+ a week, so the meds cut the frequency in half or better. What are the symptoms of my migraines? Sensitivity to light and sound, excruciating pain, nausea, and most recently a blindness that I refer to as “kalaidescopes” but is technically called an “aura”, numbness in my face and arms, and impaired speech. Had I ever had a stroke? Yes, I had a TIA in 1996 when I was 2 months pregnant.

After the usual questions, he asked me questions that no doctor has ever asked me. Was I tired or lethargic alot of the time? YES! All the time! Was I depressed? Yeah, living life like this is depressing. Did I ever wake up with a migraine? Yes, frequently! Do I have trouble concentrating or focusing on a task at hand? Absolutely! That’s one of my biggest problems over the past few years (I thought it was just old age or that maybe I had adult ADD). Did I snore? Yes (odd question, I thought). Did I ever wake up gasping for breath? Not that I’m aware of. Did I wake myself up by snoring? I’m fairly sure of it. How loudly do I snore? My Husband had to answer that one (apparently, I snore loudly).

Then he dropped a bomb on me. He said, “I believe your migraines may be caused by Sleep Apnea.”. Huh? Seriously? Nobody had ever made that connection before! Frankly, I wasn’t sure what to believe. After discussing my symptoms in more detail, I started to see the connection, too. He explained that the Sleep Apnea is robbing me of oxygen while I sleep, which is causing the migraines that I experience upon waking. Furthermore, since I’m not getting a deep sleep and am waking up too often, it’s causing the fatigue, which is in turn causing undue stress to my body and ability to concentrate, making my body and brain work too hard, which is causing the migraines while I’m awake. Also, he believes that the headaches I get almost daily (which I considered to be “normal” headaches) are actually a lesser degree of a migraine, because I’m sensitive to light and sound during these “headaches”.

He said that my quality of life has disappeared because of the migraines, and he wants to help me get it back. He’s confident that he can at least find the cause of them, and do whatever is necessary to cure them. I hope he’s right! After he left the office, I started sobbing. The nurse came back in and was shocked, concerned that something was wrong. I had to explain that they were tears of joy.

Over the next few weeks, I have alot of tests to be done. I need to have several lab tests done (bloodwork); I’ll be tested for lactic acid, pyruvic acid, C-reactive protein, sedimentation rate, magnesium levels, and carnitine levels. (honestly, I only understand what one of them is – magnesium, which has alot to do with migraines) I’ll have to have another MRI of the brain done; I’m hoping I get lucky enough that my insurance covers the “open MRI” since I’m claustrophobic. I’ll also be sent for a sleep study. Since I’ve never had one before, I don’t really know what to expect, but they told me that it will be done at a hotel room and I’ll be hooked up to alot of machines. Also, the one medicine that I’ve been taking for my migraines will have the dosage increased, to see if I can reduce the frequency by half or better again. I’d give anything to have only 2 migraines a month!

The only thing I wished would have been different today was that I wished those who have put me down, or accused me of “faking” to get out of doing something, would have been there to hear what the doctor had to say. Maybe that way, they’d get a reality check. Quite frankly, I’m tired of hearing things like “I go to work with a headache, and if I can do it, so can you” or “you’re just using it as an excuse to get out of doing this or that” or “I can’t see it, so it must not be real” or, the worst yet was when a Social Security Judge said to me, “If you’re not taking medications or seeing a psychiatrist, it must not be that bad – you’ve been denied.”.

Unfortunately, this means that I’ll once again have to put off surgery on my ankles … but it’s worth it if I can cure the migraines and start living a halfway normal life again!  I’ve forgotten what normal feels like. At least now I have hope!

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  1. November 29, 2010 at 11:13 am

    That’s awesome news! I know a lot of people who claim their lives were completely changed (for the better) after they started using a c-pap machine for sleep apnea. Not that I hope you have it, but if the tests are positive at least it will be an answer for something that’s been elusive. And something fixable, to boot.

    • November 30, 2010 at 3:13 am

      This is one of the blogs I had on MS, and just recently put here. This is almost 2 years old now. Unfortunately, the sleep study showed absolutely nothing. No sleep apnea. So we’re back to being stumped, and now the meds I’m taking aren’t working as well as they once were. There’s more info on my medical blogs (check my archives, my MS blogs, at the top of the list). I’m still working on getting all my MS blogs archived, though, so all are not there yet.

  2. November 29, 2010 at 2:12 pm

    Dear Shelly, I am thrilled to read this. I have been there, both the migraines and the sleep apnea. The sleep test is very simple. You just spend the night sleeping while you are monitored.
    People that have never had a migraine have no idea what we are talking about. It isn’t a headache, yes it hurts but it goes way beyond that, I feel like I am carrying a huge weight on my head. It pounds like someone is hitting my head with a sledge hammer. At first the aura’s scared me but I was able to accept them. Over the last few years I couldn’t stand up when I was having a migraine. A neurologist found the proper medication to handle it. My life has changed and it is so much better. Peace, howie

    • November 30, 2010 at 3:17 am

      Thanks hun. This is one of the MS blogs that I’ve just recently copied over to WP. This one is almost 2 years old. The sleep study was a royal pain, and resulted in them finding absolutely nothing. No sleep apnea. The meds that I’m taking have stopped working as well as they used to. Sorry to fill you with false hope for me. 😦 Yes, people don’t seem to understand how debilitating a migraine is! Do you still get the auras? I get them less frequently now, but when I do get them, they’re lasting longer.

      Please be sure to check the dates on my blogs, until I’m done archiving all my MS blogs.

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