Thursday, July 7, 2016
A week ago, in the midst of the severe pain, I read about a condition called hemicrania continua. It wasn't a perfect fit in describing my pain, but pretty close. Normally, you would get a watery eye or stuffy nose on the side of the pain. Since I do not have that symptom, the diagnosis was not obvious.
Hemicrania continua is considered a rare primary headache disorder of unremitting, unilateral head pain. The pain is daily and continuous. It is usually moderate intensity pain, with exacerbations of severe pain.
In order to diagnose this condition, you do a trial of a medication called Indomethacin. HC generally only responds to Indomethacin. Other headaches usually do not respond to it.
So, I contacted my doctor, and inquired about a trial of this medication. She agreed to it, and I started taking it that very night.
I am currently titrating up to the full dose, but have already experienced significant pain relief. I have not had severe pain since starting this medication. I have had periods of mild and moderate pain, but it has been a real relief.
My level of functioning has drastically improved. Light sensitivity is less and I've been able to leave the apartment 5 days in a row! I have also been able to ride my bike for at least 40 minutes at moderate intensity 4 days in a row! I'm glad I did not get too deconditioned. I'm not really having trouble getting through my workouts, which is really encouraging. I just need to keep up this routine of daily exercise.
In order to have a definite diagnosis of HC, the pain is supposed to be completely eliminated. We'll see if that happens when I reach the full dosage on Sunday. If it is determined to be HC, I will need to stay on daily Indomethacin indefinitely. No other medication has much established efficacy for the treatment of HC. So far, I'm not really having any side effects. I'll have to continue to take Prevacid and Zantac daily to protect my stomach from the medicine, and prevent and GI bleeds.
I really hope this ends up being the answer to my pain, and that the medication continues to work to reduce it. It is hard to know that this really is a permanent headache, and it will just be kept at a low level with medication. It's also scary that the pain is supposed to be completely eliminated, and mine hasn't been yet. If it is not HC, then what is there left to try?
Every time the pain increases a bit, I start to feel anxious that the medication is wearing off or going to stop working. It's hard not to, as the fear of returning to severe pain is ever present. I've definitely been a bit traumatized by my month of severe pain.
I know I will continue to have migraines and tension headaches, although I still don't know how to differentiate the different types of headaches very well. The all have similar triggers, symptoms, and locations.
But, I am so grateful that something has provided relief. I just hope it is long-lasting.
I'll be seeing my headache neurologist in August to discuss ongoing treatment.
I also did get an appointment made with Dr. Barboi, the dysautonomia specialist, at the end of this month. I'm looking forward to discussing many issues with him, as I'm still dealing with very unstable heart rate and blood pressure at times. I have had several episodes with hypotension and bradycardia that make it difficult to stay conscious, and my lips turn blue.
I'm still dealing with insomnia, unfortunately. The medication that was helping is just not helping enough any more. I'll continue working on this with my psychiatrist and hopefully get some input from Dr. Barboi as well. Most sleep medications give me trouble with hypotension and bradycardia lasting into the next day, so I am limited in what I can try.
I also just received a statement from our insurance company that my recent hospital stay was deemed not medically necessary. According to them, the initial treatment was successful, so I didn't need to be admitted for further treatment. That's funny, because I had severe pain almost the entire time I was there. So, they don't want to pay anything. And I have to figure out how to best deal with this.
Thank you so much for the support I've received recently. I hope to be able to continue to post good news for a while, as I need a break from all of these challenges!