First cluster headache at age 50

[AbinKY]

I am almost 50 years old and have friends who have migraines.  I always considered myself lucky that I didn't suffer from them.   Then about 3 weeks ago I started having a nagging headache that was only on the right side and went along my jawline.  I first thought it was an abscess tooth.  After 3 days of this, my right eyelid started to droop and the pupil was constricted.  My first doctor visit was to my optometrist, who thought it was Horner Syndrome (drooping eyelid, constricted pupil, absence of sweating on the affected side).  Two days later, the nagging headache turned into hell on earth.  It felt like somebody was taking a spoon and trying to dig my eyeball out of my head.  Then for kicks they would stab me in the temple.  Never, ever had I experienced anything like it, including childbirth.  I would literally moan from the pain.  It hurt to pee. I didn't know that urinating put so much pressure on your head!  My first ER visit was with a doctor who was a human being with compassion.  He gave me a pain shot and a referral to a neurologist.  The worst pain was over and I was left with the nagging headache, but it was bearable.  Round 2 of pain from hell came a couple of days later.  By that time I had had a normal CT and MRI, so I went to an urgent care facility since it was a Saturday.  The nurse there took my blood pressure, then took it again to make sure, and twice it was 200/110.  The doctor (a real jerk) came in and automatically accused me of being a drug seeker.  I told him that was true, I was there seeking drugs, but not to get high.  I wanted pain relief.  He wrote me a script for BP medicine and some pain meds that did not help at all.  

 

My nurse practitioner tested me for Rocky Mtn Spotted Fever (tested positive) and was immediately put on Doxycyline-a powerful antibiotic.  I thought this at least explained why I felt like I was dying.  Saw the MD a week later and was told that I had been exposed to RMSF but it was not an acute case, therefore didn't explain severe headaches.  He reviewed my chart, heard my symptoms, and immediately told me I was having CH (he himself suffers from them).  

 

Now I have to see a neurologist and an infectious disease specialist because of the positive Rocky Mountain Spotted Fever.  My doctor said to see both specialists to be on the safe side, even though he is quite certain all of this is cluster headaches.  I am thankful to hear all the personal experiences on here.  I now know I need to talk to them about home oxygen and possibly other meds.  Best of luck to other CH sufferers.  I wouldn't wish the pain on my worst enemy.

 

 

 

[CHfather]

The only thing I'm wondering about in what you say here is the "pain shot" that helped you at the ER.  Do you know what it was?  Maybe a triptan -- most conventional pain medications, even the very strongest, such as morphine, won't help with the pain of a cluster headache attack.  Or maybe your attack was ending on its own.

 

For my money, the best straightforward guide to pharmaceutical treatment of CH is the one by Goadsby that you can see from here: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/  Folks here will tell you, though, that pharma meds may be needed in some cases, but they do have substantial potential side effects that you want to minimize.  Pharma meds are what the neurologist is going to give you.  I have to say I'm puzzled that your doctor, the one who says he has CH, couldn't prescribe something, but maybe you have to be attentive to possible interactions with the RMSF meds.

 

If you get another attack soon, you might try quickly drinking an energy shot such as 5-Hour Energy.  Many people like them very cold.  Also, you might try melatonin at night, starting with about 9mg.

 

Yes, you are completely correct about oxygen.  Go prepared to insist on oxygen and not accept no.

 

You should consider starting on the vitamin D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

If you are prescribed injectable sumatriptan (Imitrex), which you probably should be, be sure you are aware of this very important strategy: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

 

You might want to look into "busting," which you can read about in the ClusterBuster Files section of this board.

 

And you probably would also benefit from reviewing the list of possible triggers that members here created: https://clusterbusters.org/forums/topic/4568-triggers/  Alcohol is the great big no-no for most people, but there are a lot of things that can set off an attack.

 

Please stay in touch.

[AbinKY]

Thanks, CHfather.  I don't know what the shot at the ER was, but I know the pain had started to ease even before I got it.  It didn't knock me out, so I'm thinking it was some sort of anti-inflammatory.  I suspect my regular physician is leaving it to my neurologist to make the definitive diagnosis.  

 

In the short time I've been on this forum, I have learned so much.  Thank you!

[1 Last Song]

3 weeks in is still way too early to tell if you have clusters or not. Most are not diagnosed for years. With that being said, I'm sorry you've been suffering in pain and I hope someone can figure out how to get you some relief.

 

Good luck and pain free wishes !!

 

1LS

[pz6ppn]

Perhaps the medical profession are getting more informed about cluster headaches and starting to recognize them earlier so a diagnosis doesn't have to take years. That's a good thing surely, and a reflection of the efforts from groups like Clusterbusters and OUCH? 

 

I'm a newbie here and started getting cluster headaches this summer, aged 49, similar to AbinKY. I had never heard of cluster headaches before, but had suffered from migraines and always thought they were the worst headache possible. Little did I know. After two visits to ER and a trip to my GP, I was given a cluster headache diagnosis within a month. I was referred to a neurologist, who confirmed the ER/GP diagnosis of cluster headaches. Within a month I was setup on Verapamil, Prednisone taper, Zomig spray and O2. Six months in and I'm on my second Predinose taper and, touch wood, it's been my first pain week since they started. I'm keeping my fingers crossed.

 

Sorry to hear you have these things AbinKY. They suck. 

[CHfather]

It's great that you got a diagnosis so quickly and appropriate medical treatment so fast, pz'.  Still, as you say, very crappy that it's CH.

 

Are/were you getting quick aborts with your O2?  Did you feel like the Zomig is effective?  Did you use the Zomig "as needed" -- maybe if the O2 didn't seem to be working -- as opposed to using it with every attack?

 

You should consider the D3 regimen described here: https://clusterbusters.org/forums/topic/1308-d3-regimen/   It makes a huge difference for many people as a long-term preventive, and it's probably better for you than continued use of verapamil.

 

Also, should it come back  -- many folks benefit from melatonin at night, starting at around 9mg.  And an energy shot drunk down at the first sign of an attack helps a lot of people.

 

"Busting," which is discussed in the numbered files in the "ClusterBuster Files" section of this board, has been a godsend for many people here.

[pz6ppn]

I never found the O2 that effective to be honest CH, although I've read most people do. I tend to hold my breath a lot during attacks. Not sure why, and I try not to, but it just seems like a good idea at the time - along with head-banging. Head-banging to get rid of head pain - my neuro suggested I shouldn't do that - go figure! The O2 is most effective for me towards the end of an attack when I'm breathing again, just to clear up shadows and stop another attack. I rarely got more than one attack a day though, fortunately. I know many do and just can't imagine dealing with that day after day.

 

My attacks are almost always in the early hours of the morning, between 2 and 3, and wake me up. By that time they're full on so I go for the abortive without waiting for an invite. I did find the Zomig worked. More recently the neuro prescribed Imitrex injections, which work a little faster, not by much, but I'll happily save even two minutes of hell by stabbing myself. My dosage of verapamil was also increased, which did seem to make attacks less frequent after a while. Also, yes, I was taking melatonin, which seemed to help sometimes but not always.  

 

Thanks for the link to the D3 - I'll be sure to check it out. 

[CHfather]

For most people, a higher-flow regulator and a better-quality mask can make a very, very big difference in the effectiveness of O2.  Having confidence not to go directly to the triptan is important -- not only is too much triptan bad for you, but there is some evidence that it creates rebound attacks and extends cycles.

 

You can get multiple injections from one Imitrex injector.  See https://clusterbusters.org/forums/topic/2446-extending-imitrex/

 

More than a few people here have reported that verapamil only becomes really effective for them at high dosages, in the 960 range, or a little below or a little above.