Cluster Headaches

Question:

Do you have cluster headaches? Tell us about your symptoms and treatment. Submit Your Comment

Comment from: Rell, 35-44 Male (Patient) Published: February 18

This is the worst pain I've felt in my life. I'm a 38 year old male and sometimes I cry from the pain from my cluster headaches. It lasts from 30 minutes to 3 hours. I've dealt with them for as long as I can remember and they have just recently started coming after remission for 9 months, headache free.

Comment from: Jckgales, 55-64 Female (Patient) Published: June 06

I had these cluster headaches for 15 years. They are the worst! The pain in the base of the left side goes to the back of my eye, and my left nostril plugs, eye tears, ears pain but the worst is the cheek. It feels like a drill is going through my bone through teeth roots and taking half my face with it. I hold and push my face hard. They have made me cry like a baby. The best thing is 15 liters of oxygen with a non-rebreather mask for up to 15 minutes. It's my go to. Absolutely horrible. Triptans work but avoid. Good luck.

Comment from: Sue, 45-54 Female (Patient) Published: February 27

I am in the early stages of realizing I may be suffering from cluster headaches, although I've been in pain for 8 years. It has been difficult and frustrating trying to figure out what I've been going through. I am a polio survivor with residual effects of it. My spine is severely damaged. And I have nerve and muscle damage, I was finally able to explain it all to my neurologist. I’ll get an MRI and lab work. I'm hopeful.

Comment from: Lucy, 65-74 Female (Patient) Published: July 31

My first cluster headache (CH) was 12 years ago. I don't know why it started or what triggered it but I've been episodic since then up until now. Usually I suffer with a CH for 6 weeks and then CH free for a year but this time it's different and I've been in a cycle for 6 months now. I take 20 mg of prednisone and 320 mg of verapamil daily to control them. There are occasions when one breaks through usually right at REM sleep but it is minimal and tolerable. When that happens I use a warm compress to the left side of my face and head and pace the floor or sit and rock back and forth. I realize not a large percentage of people get these headaches but my one wish is more research be done to at least better understand these painful headaches.

Comment from: flymaker ohio, 55-64 Male (Patient) Published: February 18

Cluster headaches have attacked me for 12 years now. I fight the monster every day. I have an Implant on board; Medtronic’s stimulator battery on my left side just below my belt line. The wire traverses across my back to the center and up to the base of my skull, then to the back and around both sides of my head stopping about the start of my ears. The date of my surgery was 2/14/14, and outpatient at the hospital I was at; that's how good my doctor and staff performed their jobs. The stimulator has helped, however it is not the end all that we all need, I'm still suffering and having to take medication. I don't take any painkillers at all. I do however use DHE-45. My faith, family, and friends have kept me strong. Try ASMR (autonomous sensory meridian response) to relax.

Comment from: kelly, 55-64 Female (Patient) Published: July 07

I began having cluster headaches 6 1/2 years ago. When they started they lasted 6 months, then stopped for 10 months, and then came back for 29 straight months during which time my life was awful. They then stopped for 4 months then came back for 4 months then stopped again. They have recently started back again and I now have no pain medicines of any kind (over the counter only). I don't know how I am going to get through this with no pain medicines! These headaches are so severe, as you well know. Well, there you have it.

Comment from: tmac, 45-54 Male (Patient) Published: September 16

I have had cluster headaches for over 15 years now. I initially thought the problem was with my eyes. It took a few years before a neurologist told me I had cluster headaches. I tried oxygen and oral meds but the only thing that worked was the Imitrex shots. They work almost immediately. I used to get them every two years. I then went four years without one, until last week. I have noticed they occur more when I drink alcohol. They are exceptionally painful. Good luck to anyone who suffers from these!

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