Migraine Headaches Support Group
Migraine is a neurological disease, of which the most common symptom is an intense and disabling episodic headache. Migraine headaches are usually characterized by severe pain on one or both sides of the head and are often accompanied by photophobia (hypersensitivity to light), phonophobia (hypersensitivity to sound) and nausea.
I've been diagnosed with chronic daily headaches and chronic migraines, but I feel like those are a bit off, because never once has the pain gone away. My (now former) doctor would always ask when my last episode was, even after I would repeatedly explain that I don't have episodes, it's a never-ending pain. It's like he couldn't understand that. I'm currently looking for a different doctor, but it looks like it's going to be a bit of a drive since there's only one neurologist in my town. :/
I took Topamax for 7 months but stopped because I was having some major memory loss as a side effect.
I was wondering if anyone here has been diagnosed with hemicrania continua and would like to share their experiences, be it doctors, getting the right diagnosis, or finding the right treatment!
I took Topamax for 7 months but stopped because I was having some major memory loss as a side effect.
I was wondering if anyone here has been diagnosed with hemicrania continua and would like to share their experiences, be it doctors, getting the right diagnosis, or finding the right treatment!
I had 2-3 severe migraines a month starting in my early 20's. In my early 40's I was Dx'd with Addison's disease. I've had a migraine everyday now for 18 years because of lack of cortisol. The first 10 years they were 24/7 and about a 7-9. When I was Dx'd with celiac disease at 54, my headaches have become manageable again.
I'm thankful my doctor understood that I was in constant pain. I hope you get the help you need.
When the docs were first trying to find out which type of migraines I had, They did try to treat me like I had Hemicrania. I took Indomethocin twice daily for at least 2 weeks and it made no difference for my migraines.
I guess that is the drug of choice. Good luck trying to find out what type of migraines you have and hopefully the right treatment to ease them.
Keep in touch.
Carol
The good news:
If you suspect HC, no need to find a new neuro. Call your current Neuro and ask for a script for Indomethacin. It is both the diagnositic (the way they determine if you have HC or not) and the cure for HC. If you have HC and take Indomethacin, your (primary) headache should stop. If it doesn't, you don't have HC.
Your neuro should really have no reason to not scribe it for you, unless you are on something that is contra-indicated for it. Its basically a big brother to Advil (anti-inflamatory) so there are no concerns about addiction or weird side effects.
The bad news: Indomethacin can be very harsh on your stomach. If it doesn't work, just stop taking it.
The other bad news: HC seems to come with at least one secondary migraine type associated with it. Indomethacin will probably not change that one at all. But, if you notice a change in the nature of your migraine, or it stops hurting all of the time, then you've at least taken a good step.
I did a LOT of research on HC one weekend while waiting for my neuro to be open so I could ask for the script and then while waiting for the script to be sent to the pharmacy. What I found out is that its very, very rare. Maybe 3-5,000 cases in the US right now rare. I truly hope you get relief, but don't be dashed if this isn't it.
If it isn't HC and you do eventually figure out what it is, please let me know ^.^
I figured it was HC because that's the only chronic migraine type that fits with what I deal with.