Donna N
rating: +1+x

Age : 42

Diagnosis: Cluster sufferer
Clusters started: Since June 2010

I am a stay at home mom with 5 children. I live in British Columbia, Canada so although I have good medical coverage, wait times are long and specialists can only be seen by referral from your GP.

I guess that since cluster headaches are rare, and women with cluster headaches are rarer, I must be some kind of special.

My problems began back in June 2010 with pain and pressure around my eye. I saw an optometrist thinking it was the 40 year old eye strain caused by my aging eyes. Nope.

I suffered through a couple more months, saw a couple of different doctors. My GP finally sent me to an Opthamologist, who discovered that I had a minor problem in my eyelid that required surgery. I had that done and yet the pain and pressure did not go away.

By January 2011, the pain was increasing and I was getting "headaches". Doctors decided I had a sinus infection. I did 3 rounds of antibiotics, each one stronger than the next. By this time, my nasal passages on the affected side were also swelling shut so the sinus diagnosis did not seem wrong. With no luck had after all the antibiotics and netti pot rinses, I was referred to an Ear, Nose and Throat doc. He was a bit perplexed by my swollen nasal passages and description of the my symptoms and couldnt' even get a scope up my nose to look around…so he sent me for a sinus CT. CT was clear, except for the nasal swelling. He decided the problem was not in his spectre, and postulated that it was nerve, inflammation, or migraine related. He sent me back to the GP.

The GP guessed nerve and put me on Gabapentin in the spring of 2011 with a diagnosis of Trigeminal Neuralgia. I remained in remission (a coincidence?) until I moved across the province in December 2011.

This last episode has been very text book. My new GP is young and has never seen a case of cluster headaches so we are working together to figure it out. He has yet to refer me to a neurologist, but at my next appt I will push for it after doing all my research. Fortunately, an astute ER doctor (old and crusty) diagnosed it immediately and sent me away with a 4 page print out to share with my GP.

My symptoms include, intense pain around my left eye, particularly along my eyebrow, with pain radiating to my temple, cheek bone and upper teeth. During a bout, I have severe edema in my eyelid, with pressure around my eye. Swelling in my nose. My eye is red and watery and my nose runs during attacks. I usually get about 6 attacks a day, with the worst ones being around 9 p.m. and 2 a.m.

In addition to the gabapentin (2400 mg / day), I am now taking verampamil (sp?) 360 mg/day, and am just taking a prednisone taper (60 mg X 5 days, then 50, 40, 30, 20, 10). The prednisone was a miracle for me and had me attack free within 18 hours. However, I am on the taper now 40 mg day and the pain is increasing again around my eye. I am worried. I already have low blood pressure so upping the verampamil will be difficult. I was prescribed oxygen, but did not find it helped, although since then I wonder if it was the crappy free mask they gave me. Imitrex works okay (inhaled), but only at the 20mg dose, which left me having to choose which headaches to treat. Zomig helped at a 5 mg dose (quick dissolve) and I could treat more headaches…it didn't stop the attack, but lessened it enough that I wasn't seeing the value in being dead.

I go back to my GP in 5 days once the taper is done. I am crossing my fingers that it holds.


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