I’ve heard a lot of talk about “cluster headaches” and “chronic migraines” and such. I do see a headache specialist who is wonderful, although she is a three hour drive. I’m wondering – how do some of you tell the difference between different types of headaches or migraines?
Meaghan has given you some excellent resources that may help you understand the differences between different types of headache disorders. I thought you might benefit from a first-hand account. I’ve had migraine for 41 years. By the time I was in my late teens, I had also developed medication overuse headaches. Cervicogenic headaches were added to the mix after a couple of bad car accidents in my early 20s. Then cluster headaches made their appearance right before my 30th birthday.
MOH felt a lot like a run-of-the-mill tension type headache. The dull ache was all around my head, but no nausea or light/sound sensitivity. The ibuprofen I took for migraine was causing the problem. Once I was able to stop taking it, I broke the cycle and haven’t had that problem again.
Cervicogenic headaches were a bit trickier because they would start off either like tension-type headache or as pain and stiffness in my neck & shoulders. Since neck pain is often an early sign of migraine attacks, it wasn’t so easy to tell the difference. To make matters worse, these headaches were a migraine trigger. My doctor and I developed a strategy in which I would take 2 Excedrin if I wasn’t sure if the pain was a migraine. If that didn’t work, then I took Zomig. That worked for many years. Finally a few years ago I started getting myofascial release therapy. The PT taught me some exercises to do at home to minimize the risk of getting these headaches.
Cluster headaches were a completely different situation. At first I thought they were migraine because I didn’t know any different. However, the symptoms were unlike any migraine I’d ever had. Lights and sound didn’t bother me at all. One eye would feel like it had been split open. Burning tears would pour from just that one eye. My nostril on that same side would either run or be stopped up. My eyebrow and eyelid would droop. I looked like I had Bell’s Palsy. I couldn’t sit still. Rocking and pacing made the pain more tolerable. Speaking of pain, these new headaches made my worst migraines feel like a bee sting. Unlike the pounding, throbbing of a migraine, this pain was sharp and stabbing, like my head had been split open with an axe. The intensity was so high that I would beat my head against the wall for relief. I couldn’t help but scream, cry, curse, and pull my hair out. They would go on for 1-3 hours, sometimes causing me to black out from the pain.
They were also a strong migraine trigger. Every time I got a cluster headache, a migraine would follow. Sometimes I would get both at the same time. I couldn’t sit still, but it hurt to move. The migraine would last for 2-3 days while I would get repeated cluster attacks every few hours for 1-3 hours. When that would happen, only a trip to the ER for powerful pain meds and sedatives would stop it.
This was my life for almost 16 years. I’m not cured. I still get migraine and cluster attacks. However, thanks to two great specialists and the right treatments, the frequency is down by over 80%. Now I can confidently use Amerge to stop migraine attacks quickly. Cluster attacks still require high-flow oxygen or Zomig nasal spray. Thankfully I’ve only needed to abort a handful of those this year.
I hope that my description helps you understand a little more what it’s like to live with more than one headache disorder. Write back if you have any questions.
Thank you for sharing your story, Tammy. As I’ve been reading stories on this website, I’m comforted to know that I’m not the only one who is suffering… but suffering with hope. I believe I have migraines only, as my diagnosis states (chronic). I started taking Zonisamide twice a day a couple weeks ago and just yesterday got the first migraine in two weeks. Although the migraine is continuing today, I have a feeling it’s due more to hormones (I’m 43 and have menstral migraines as well). I’ve been through the gamet of meds, including Botox for a few years that eventually just stopped working (like all the other preventatives and abortives I’ve tried). Maybe the Zonisamide will give me some relief for a while!
Keep at it with Zonisamide. It can take up to 90 days of consistent use to know if a treatment will work for you. A 2-week break is a very good sign. 🙂
We’re close in age and I get menstrual migraines, too. There are preventive options specific to this type of attack. Some docs recommend using Naproxen or Frova for those few high-risk days to prevent attacks. You might want to ask about that. There’s a great book out on this and related issues. We have an excerpt here: https://migraine.com/blog/the-womans-guide-to-managing-migraine/
Also, one of the newer CGRP drugs in development is being studied for menstrual migraine. It’s Tecalgepant. It was first tried for long-term prevention but the studies were halted due to concerns about liver toxicity. Now they are testing to see if it is safe for short-term use. Fingers crossed on that one!