New here but not new to the evil!

[bobcat]

Hi all!

My name is Bob and I recently been suffering with a consistent 24 hr a day headache since  Feb 15 2019. Previously I had a 24hr a day headache from 6/2010-10/2016 and it ended with a cortisone shot I got in my lower back (l5/s1). So I went back this time and the shots didn't touch it (I also got 2 shots in my neck).

It started this time while curling a 30# dumbbell. I thought I strained a muscle in my neck but soon realized it wasn't as 2 minutes later I had a sudden onset of these miserable headaches! Doctors did MRI of brain/neck and also vascular MRI of brain and neck but said everything was normal.

I grew up watching my mother go through bouts of cluster migraines but she would get them after she went to sleep and they would subside after 6 or so hours only to start again the next night. Hers started when she was 19 and she still suffers from them today. My brother has them and they started when he was 17 and the mimic the same symptoms as my mother's.

My headaches are much different as they never leave. Mine originally started when I was 36 after tightening a pipe with 2 pipe wrenches.  They vary in intensity and get uncontrollable when I get my heart rate up. I'm a plumber and it's very hard to work with these as a lot of physical activity is required to do my job. I am currently only working every other day. But the days I do work I suffer and by the end of the day I'm not a pleasant person to deal with. From 2010-2106 I took a management position that didn't require manual labor. 

I get a terrible burning sensation in my neck and the headache throbs with every heartbeat. Some days it's bilateral and others it's unilateral, sometimes I can't move my head side to side because the pain is so intense.

I am seeing a neurologist but his methods are not working. I am willing to suggest things to him but I don't know where to start. In 2010 I was diagnosed with cluster migraines by one doctor and low pressure headaches by another even though there was no signs of brain sag on the MRI. This doctor thinks they are cluster headaches and prescribed the verapamil and indocin and I'm in the wait and see mode!

I take 240 mg of verapamil and 50 mg of indocin daily. It helps somewhat but never stops it and certainly doesn't prevent it from escalating when I get my heart rate up. From what I'm reading here it wont! I need a method to abort the headache then the preventive medicine may help? 

In March I landed in the ER because of high blood pressure (this was before I could see the neurologist). The pain seems to drive up my blood pressure. They put me through a stress test and in 7 minutes on a treadmill the pain escalated to a 10. I passed the stress test proving there is nothing wrong with my heart, but it also proved I can not function in daily activities without a terrible headache. 

I do know that a shot of Toradol and oxygen can calm it down for a few hours and then it intensifies again. This worked in the ER and has worked in the past.

I have never had oxygen at the house to use daily would that be a good place to start?

I know most of you aren't doctors but any suggestions that I can relay to my neurologist  will be greatly appreciated. 

Thanks, 

 

Bob

 

[xBoss]

Hey Bob, welcome to the forum. This is a great place to be. You will find at least some form of relief here. Hang in there!

[bobcat]

Hi xBoss,

 

Thanks for the welcome!

[CHfather]

I understand why you might feel like you're at wit's end.  This sounds really awful.  Not a doctor here, but it doesn't really sound much like cluster headache.  Among other things, CH is not a 24/7 thing, and the pain tends to be most intense around an eye, and they can be brought on by stress or exertion but also have a life of their own. And they're virtually never helped by an NSAID like Toradol.  There's a condition called cervicogenic headache (originating in the neck) that of course does seem to match up, although maybe the MRI etc. ruled that out.  https://www.medicalnewstoday.com/articles/324108.php  Hemicrania continua (HC) is another possibility, since it is 24/7, but again the symptoms and causes don't really seem to fit.  The Indocin is probably meant to treat a hemocrania as a possible cause, but that's quite a low dose.  Maybe the doc is being cautious and will increase the dose.  (Many people get significant stomach distress from Indo, so it's often prescribed with something to protect the stomach lining.)  Indo is essentially a stronger version of Toradol.  https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf   The verapamil dose is also low for CH, but again, it's good medical practice to start low, monitor, and increase (people with CH can sometimes need 960mg/day or even more).  (Anti-inflammatories like Toradol and Indomethacin might also be prescribed for cervicogenic headache, and of course the steroid injection is for anti-inflammatory purposes.)

Of course, if O2 might have helped in the ER, and if the doc thinks you might have CH, then O2 is worth trying and should be prescribed.  Prednisone is also sometimes prescribed as a temporary treatment for CH, and it seems to me that it might also be tried, since it's an anti-inflammatory.

I apologize for being picky here, but while "cluster migraine" is a term that has been used by doctors and lay people, it's nearly meaningless as a medical term and has been pretty much abandoned.  A person either has CH or has migraines (and some people have both), but they don't have "cluster migraines" unless they have symptoms of both at the same time enough that the diagnosis is too blurry to make.  That's very, very rare.

 

[Pebblesthecorgi]

I agree with CHF.  It does not sound like clusters.  Getting a proper diagnosis is most important.  If your Neuro is indifferent or can't figure it out go to a headache center.

[bobcat]

Thank you both for your input!

I agree, I don't think I have CH.

My mother and brother fit the description to the tee but my symptoms are completely different.

It kills me that the doctors can not figure this out. 2 out of 3 neurologist have called then CH, I used the term "cluster migraines" because as a kid that's what my parents called them. I did notice they are called Cluster headaches. I have quite the hard time trying to type and stay focused with the pain. 

I have been to the Faulkner Hospital headache clinic in Boston and they diagnosed me with the low pressure headaches but their protocol in 2010 did nothing to help.. they tried a blind blood patch, botox, verapamil. Living with that for 6 years was terrible! The neurologist in Boston  may have been the most arrogant person I have ever met. I will have to research other Headache clinics in my area

I have other symptoms like numbness in my forehead, the intense pain sits right behind the eye equal with my temple. I tried a round of prednisone but it didn't touch it.

I will research the cervicogenic headache again as they were on my radar in 2010 but I was told otherwise.

Thanks again,

Bob

[Dallas Denny]

Welcome Bob!

If you're close to Boston you can access a member here who is also a Neurologist with a specialty in Headaches.....bostonheadachedoc has been a hero in the cluster headache community for many, many years!  I'll send him a message on Facebook and see if hell drop by and comment on your thread!

Definitely agree with Pebbles and Chf that it certainly doesn't sound like clusters though

Dallas Denny 

[BostonHeadacheDoc]

Hi bobcat, 

Well that sounds rotten. Certainly not CH as the headache is all day, also CH is strictly one sided- sounds like yours is not? Not CH in which case verapamil is not going to help at all at all. Indomethacin is non specific, certainly a good anti-inflammatory, beware known to be very irritating to the stomach. Best avoid using the term cluster-migraine as it causes mass confusion and it is mostly used by folks who know not what the attacks are. 

Your story at the gym (at least you were lifting a dumbbell) and sudden headache- that is often one of 2 things, a thunderclap headache- which can be a syndrome known as reversible cerebral vasoconstriction syndrome (RCVS) but that only lasts- days to weeks; or could have torn a muscle, ligament or other neck hardware resulting in a cervicogenic headache (caused by neck problem). I totally understand why they thought of low pressure headache- can present with quick onset headache focused at the back of the head (can be thunderclap). Low pressure/low CSF volume headache is generally positional - you get much better quickly lying down, with head down, only for the pain to come back quickly when upright.

Out of control high blood pressure can also present like this- as you have high blood pressure you had better be measuring your blood pressure at home (with a home BP kit) to make sure it is not very high). Botox is not going to help you.

I was recruited to the Graham Headache Clinic at Brigham and Women's Faulkner Hospital April 15th. Fell free to PM me if you have any Qs or bmcg@bu.edu 

[bobcat]

Thank you Dallas Denny for the connection! I reached out to Boston Headache D with a private message.