Anyone else suffer from Cluster Headaches

[FOREVERTRUE]

I just came out of remission after 20 months of not having one of these Monsters. Is there any good relief that anyone has found. The neurologist has me on Sumatriptan (Imitrex) nasal spray and also prescribed high flow oxygen. Insurance only covers 6 doses of the Imitrex per month which is about 2-3 days worth since I am now having 3 per day lasting between 45 minutes to an hour. Insurance also may not cover the oxygen (not sure yet still trying to work through details.)

For those that don't know they are also known as suicide headaches or my personal nickname for them Satan skull****ing my eye socket.

Again if anyone has any info on something that might relieve the pain or stop this cluster altogether (legally) please help.

 

[ruxCYtable]

I'm not sure if mine are cluster or tension, but I would not even wish them on a Hawk fan. Fortunately, four Advil and a nap seem to take care of mine.

 

[FOREVERTRUE]

I'm not sure if mine are cluster or tension, but I would not even wish them on a Hawk fan. Fortunately, four Advil and a nap seem to take care of mine.

Clusters headaches typically last between 30 min to 1.5 hours having multiple per day. Last cycle I was having 5 per day. Pills don't generally take effect fast enough and are just starting to take effect as the headache would be winding down anyway. Doctors suggest the pain (on a pain scale) is similar to childbirth (have to take their word for that one).

If that sounds like what you have I would try to get on imitrex as for me that seems so far to be the best, but still not good enough.

 

[ImJustKCClone]

There is an old yoga method that takes a long time to describe, but basically amounts to moving the pain out of the top of your head, starting from the toes up. If you're interested in knowing more, PM me.

 

[cowboycurtis]

When you say legally, does that mean you won’t use marijuana? Because it is legal in a lot of states medically. Hell even if it is illegal it sounds like it would be worth a shot. Anything sounds better than what you’re going through.

 

[SpokaneCY]

I just came out of remission after 20 months of not having one of these Monsters. Is there any good relief that anyone has found. The neurologist has me on Sumatriptan (Imitrex) nasal spray and also prescribed high flow oxygen. Insurance only covers 6 doses of the Imitrex per month which is about 2-3 days worth since I am now having 3 per day lasting between 45 minutes to an hour. Insurance also may not cover the oxygen (not sure yet still trying to work through details.)

For those that don't know they are also known as suicide headaches or my personal nickname for them Satan skull****ing my eye socket.

Again if anyone has any info on something that might relieve the pain or stop this cluster altogether (legally) please help.

Are these all considered "migraines" or are they different? Either way it sounds like you're going through hell again... Hope you find relief...

 

[Sparkplug]

I got to the point that prescription drugs were doing very little for me

As soon as I felt one coming on I grabbed the Excedrine and Benadryl bottles. (Went to the ER a few times and one of the drugs they gave me in the IV was Benadryl).

Now I’m using Xanax and Benadryl. Realized my fear of the headaches was making them worse so at least I am relaxed

 

[jdoggivjc]

Thank god that is one thing I don't have to deal with. I get numerous headaches, but usually it occurs in my right sinus. The pain is usually centered just to the right of the base of my nose in that sinus divot, where I have two "mucous cysts" that my surgeon declined to remove as "they'd just come back anyway". I also get migraines on occasion behind my right eye, but nowhere near the frequency nor regularity that would suggest cluster headaches.

 

[Macloney]

Legally?

You are going to let someone who arbitrarily decided that a miracle from God is "illegal" tell you that you can't have relief from pain, in turn greatly improving the quality of your life?

You need to get a little selfish and take care of your health. The people that won't allow you access to marijuana aren't going to.

 

[somecyguy]

Thank god that is one thing I don't have to deal with. I get numerous headaches, but usually it occurs in my right sinus. The pain is usually centered just to the right of the base of my nose in that sinus divot, where I have two "mucous cysts" that my surgeon declined to remove as "they'd just come back anyway". I also get migraines on occasion behind my right eye, but nowhere near the frequency nor regularity that would suggest cluster headaches.

Very similar to me. My mother has lived with migraines her entire life and apparently it's hereditary to an extent. Mine is normally in my right sinus where I have a deviated septum which makes it worse, but to fix it they would have to bust my face all up. About every 30 to 60 days, I get one that lasts anywhere from 2-5 days. Sometimes I can function other times not so much. It sucks.

 

[jdoggivjc]

Very similar to me. My mother has lived with migraines her entire life and apparently it's hereditary to an extent. Mine is normally in my right sinus where I have a deviated septum which makes it worse, but to fix it they would have to bust my face all up. About every 30 to 60 days, I get one that lasts anywhere from 2-5 days. Sometimes I can function other times not so much. It sucks.

My headaches were getting so bad a few years ago (6 out of 7 days of any given week) my doctor had me get an MRI done. It turns out my deviated septum was so bad it was touching the opposite sinus wall on the right side. It was so bad the ENT specialist was convinced I had broken my nose at some point, but not to my recollection. I still get sinus headaches, and some of them are still nasty (I'm convinced it has to do with those mucous cysts), but the frequency is way down. I've learned that Extra Strength Excedrin knocks them out quite well.

 

[Gunnerclone]

SIAP but you need a high CBD strain like a 1:1 ratio. Some Ac/Dc would probably do wonders for you if you can get your hands on it.

 

[SayMyName]

Lifetime migraine sufferer here. Took a long time working with a neurologist to find the right cocktail of medications for me. Did a lot of trial and error in the Triptan family of drugs to find an effective (and affordable) rescue med with fewest side effects. For prevention, I take a daily combo of off-label blood pressure med and antidepressant. Again, had to adjust dosages and type. Has been life-changing for me, but a lot of time and adjustments to get there.

Best of luck you find something that works!

 

[Rabbuk]

Magic mushrooms are supposed to help these

 

[Gunnerclone]

Could all of the people in this thread suffering from these numerous ailments tell
Me if they’ve used cannibus as a medicine for their conditions and if so did you find any relief?

 

[heitclone]

I don't think he meant weed, psilocybin (shrooms) and LSD are helpful. Some consider mushrooms the only effective known treatment.

 

[FOREVERTRUE]

When you say legally, does that mean you won’t use marijuana? Because it is legal in a lot of states medically. Hell even if it is illegal it sounds like it would be worth a shot. Anything sounds better than what you’re going through.

The one thing that has shown real ability to stop a cycle of the clusters in its tracks that I have heard the most about is mushrooms or LSD. Sounds like one dose would put most people into remission for a fairly lengthy time.

 

[FOREVERTRUE]

Are these all considered "migraines" or are they different? Either way it sounds like you're going through hell again... Hope you find relief...

No, while I feel for people that suffer from migraines as they can last a lot longer the pain isn't nearly as sever (judging from the migraines I have had), but still very painful. I don't have sensitivity to light or nausea from a cluster, but the pain is much sharper and routinely wakes me multiple times per night.

This describes clusters pretty colorfully along with a little humor, but pretty accurate.
http://www.cracked.com/personal-experiences-2122-suicide-headaches-5-realities-worst-thing-ever.html

 

[FOREVERTRUE]

For extending the remission I am on Verapamil (blood pressure med don't know how or why it works since the headaches are not tied to blood pressure), and as soon as I came out of remission on a burst and taper of prednisone (doesn't seem to have helped).

I have been blessed to get the 20 months though as usually my remissions were only 5 months or so before.

 

[somecyguy]

I still get sinus headaches, and some of them are still nasty (I'm convinced it has to do with those mucous cysts), but the frequency is way down. I've learned that Extra Strength Excedrin knocks them out quite well.

For a while I was taking ES Excedrin so often, my doctor warned me it was going to mess up my liver, so I had to back off it. Flonase and some of the other allergy medicines work on occasion, but I build up tolerance to them quickly, so I have to rotate them often.

This past winter, I started using the steam room at the local gym at least 3 or 4 times a week, which has helped a lot. I've always used a neti pot but the hot humid air seems to help with any inflammation in my sinuses. I haven't used it as much over the summer, but I will if I feel one coming on.