A Cluster Headaches story
Nov 15, 2015
Hi everyone! A little bit about myself: my name is Melissa, I'm 31 years old and I live in the province of Newfoundland & Labrador, Canada. I was diagnosed with cluster headaches when I was 16 by my very amazing GP at the time. I remember how little research and information was available about CH back then. In fact, the only treatment my doctor could suggest at the time was Elavil (Amitriptyline) and that didn't help at all. In fact, the side effects were almost as bad as the headaches themselves! I went without any medication until last year when my current GP suggested trying Zolmitriptan. I find that if I can take the oral dissolvable pill during the shadows, I can usually prevent the full attack (or at least) shorten the intensity and/or duration. However, if I miss that window then I'm at the mercy of the CH until it's over :( I'm episodic, usually the fall of the year, but sometimes the spring as well. Some years it's just the spring and not the fall. The shortest episode I've ever had was 3 days of CH while the longest was 6 weeks. Usually, they start as one every other day then progress to every day or multiple attacks every day. Light, sound and smell doesn't bother me. The pain is always in the left side, focused around the eye but residual pain in my neck, jaw, forehead, etc. My left nostril will run and depending on how bad the pain is I might become stomach sick. It hurts more to lie down, I used to rock back and forth but now I find I just get an ice pack on my forehead/eye area and a heating pad on my neck (this doesn't make the pain better, just confuses my senses and takes my mind off it a bit!) and I wait. I curl up in a ball with my head down and my butt up and just try to wait it out. My heart goes out to all of you who have chronic CH, I honestly don't know how you do it.
Hi Melissa, You made me laugh describing your position during an attack...!
I do exactly the same! Using also ice packs and hot packs to confuse the senses. It usually happen to me during the night, and It's very rare for me to have that during the day, but once it happenned during the day work and one of my collegue saw me like that in the restrooms. He was about to call an ambulance, almost panicking, and I think was even more confused when he saw perfectly fine 30 minutes later...:)
My cluster headaches are on the right side, but other than that, I also ajve the exact same symptoms: one nostril blocked the other running. Pain in the neck and jaw. I have been waiting 7 years before a doctor told me it was CH. Now i'm on triptan (Imiject - injection sumatriptan) when the attacks are too strong, Verapamil helps a bit on the long term, and oxygen sometimes. I'm also episadic, with the shortest series of attacks were 2 weeks, longest about 10 weeks. Same between april/june and August/october. (Usually only once a year, but that's not consistent)
But there is also soemthing people do not talk aften is weed... Yes, I know it's weird, but I found it helps if you are able to smoke a small one before an attack. But it has to be natural, without anything else inside. I used to have my attacks during the night, between 1 and 2 hours after going to bed (whatever the hour) If I smoke a small one before, it reduce the pain. On a scale from 0 to 10 (7 to 10 are when I need an injection) 3 to 7 only a Relpax (Elitriptan - small dosage on pills) below only ice. It helps to reduce significantly the level of pain. For about 3 days I tried the experience and I was able to never get below 4 or 5. I know, it's not a scientific, and I don't tell you to da anything illegal, but I know in some countries it's allowed if it(s medical. I hope some research are done this way, because the content of that plant helps to regulate the hypothalamus (responsible for the cycle, including CH) Hope it helps...
Hi Melissa & Laurent, I have recently discovered that I am suffering CH, since been trying to control it using natural ingredients, resorting to Panadol advance and some codeine capsules in the severe attacks, but it seems that I must have a physician diagnosis first before I can get proper medication, which i hear has lots of side effects, and hence i am kind of reluctant to go about doing. I realized that when i sleep short periods and get awaken by a call or a mosquito the episode may occur, but it is not as severe as the regular abrupt episodes that i have at the start of the spring season.
The cycle seems to be day in, day out, as in every other day, and mainly occurring in the morning, or before noon, and may follow nights of restless sleep. I do not use any cold or warm packs, but all the symptoms you described happen to me, the runny nose, I keep using a nasal spray to clear my sinus as it seems to help to keep the sinus clear.
I am new to this forum and found you guys the most interactive, hope we could share more information, and maybe help support one another, even though we live continents apart..
