Hi all,

T here, 35 yr. old female. I'm on day 22 of my first ever cycle.

I had no idea what was going on at first. I had been taking a small dose of acetaminophen for a shoulder pain, so I thought that maybe I had a bad reaction to the acetaminophen and it caused my blood pressure to spike. I stopped the acetaminophen immediately and the headaches continued. It didn't take long for me to recognize a pattern - being jolted awake every night in severe pain (like someone had hit me in the right eye socket with a hammer while I was asleep!), with headaches continuing on and off throughout the mornings, then nothing, totally pain-free, all afternoon/evening. Every day was almost exactly the same. Because I thought it was possibly blood pressure related, I tried meditation and thought it worked at first because the pain would disappear almost magically after a fairly short meditation session. Eureka! I cured myself with mindfulness! I felt 100%, like a million bucks! Then, bam another one would hit. Then, it stopped working altogether, of course, because it never actually worked in the first place and it was just a coincidence that I happened to be close to the end of the attack when I started the meditation session. (I'm still meditating, I've just backed off the idea it is a miracle cure for these attacks)

Unfortunately, I had to attend a conference for work during days 7-10 of getting these mysterious attacks. Getting out the door to the morning sessions was a tremendous accomplishment. I still don't know how I managed. Maybe I'm superhuman. I'm sure I looked like a wreck. Regardless, the three nights in a hotel helped me rule out potential environmental causes in my home because the attacks got worse, not better during my time away. When I returned home I tried to get in to see a GP, but ended up at urgent care because the first available appointment for new patients with any GP in the whole town was months out! What I thought would be a quick diagnostic/referral visit at urgent care turned into a trip to the ER, which turned into a three-day, two-night stay in the hospital as they ran every blood test and scan imaginable. Eventually, I was released (incorrectly diagnosed) with a prescription for 800 mg ibuprofen (even though I told them I had already tried ibuprofen and it hadn't touched the pain). The follow-up visit with a different neurologist was where I was finally diagnosed with cluster headaches. He prescribed me a Medrol Dosepak and Imitrex (oral). I'm on day three of the steroid and it seems to be helping. I've only had four attacks since starting it. Although, from what I'm reading, I gather this is probably not an appropriate long-term solution. I took one dose of the Imitrex at the start of one attack, but don't think it helped quickly enough and the side effects left me unable to work for several hours. I don't think I will take any more of them.

Anyway, that is the short version of my diagnosis story. I guess it is still developing. After reading others' stories, I realize I am fortunate to have caught this relatively early. Now my doctor and I can get started trying to figure out what remedies will work for me. I'm doing my best to keep a positive attitude about everything as I know it could be so much worse and I've never found much comfort in wallowing.

T

Sure it's a party, right here in the club no one wants to join, and you're truly welcome.

Just a quicky about the immitrex, is it the pills you were given? If so, they're not a lot of use to us because they are so slow acting. Look for the nasal inhalations or ideally the injections and we'll explain how to get far better results.

You still have a life ahead,

Brian.

Hi and welcome.  Your story is fairly typical of what we all suffered at the beginning.  Imitrex is a wonderful thing, but the pills are far too slow to work. Ask your doctor for the auto injections.  They will work in 5 - 7 minutes.  Also, check out the boards for posts by batch about his vitamin D3 regimen, which has proved to be miraculous for 80% of us.
Maz.

Hi and welcome

Getting a diagnosis at around the three mark is incredibly quick. Many can go several years before getting it, so you are ahead of many.

Medrol is a steroid and it will be being used as a short term preventive. But the normal process is to start on a longer term preventive which can often take 1-2 weeks to take effect with the steroid covering those first few weeks.

Normally a steroid isn't used for more than 1-2 weeks since most have risks around joint damage. If you've been prescribed it for more than a month I'd make sure you discuss the potential side effects with your doctor.

Common longer term preventives would include verapamil, lithium and topamax.

D3 is a very effective preventive for many with 80+% of people benefiting from it (myself included). Read more about it at -
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Brian and Maz explained how the pill form of Imitrex isn't too great for CH. Plus I've experienced the post Imitrex "hangover" (not quite sure how to describe it) which I've not had with the injections. You can also get nasal sprays which work about as quick as the injections.

You've also done some great work in ruling out some environmental causes with the hotel stay, plus the hospital stay. Very logical thinking, which isn't always easy with CH around.

Keep reading and you'll soon know more than most neurologists. Fire away with any questions.