Hi there.

For the last 6 years I have been experiencing up to severe headache about once anually, I have always rejected them as beeing muscular or stress caused - thus my treatment has been focused on physical therapy when it became overwhelming. And since the symtoms went away after a few weeks I assumed it was successfull. In my latest attack I went to a new therapist who rejected all the claims of the previous one, and said there were nothing wrong with the balance of my neck and chest muscles (the old one said my chest was too tight and was constantly pulling my neck muscles). I went to a doctor today who based on my symptoms diagnosed me with CH. After reading up on it many of the pieces fall to place including

1. Daily attacks that occur around the same time of day. 1-3 of them for the last month, however with a handfull of pain free days.
2. Unable to sit still during an attach. I massaged my self with a rolling pin during one of them so hard that the result was a numbness in my left part of the scull for one week. Pain ranging from I'd say 2 to around 8 on the Kip Scale.
3. All pain for the latest month beeing centered around my left eye, ear and back to the base of my scull. Could be just one of the location, or up to all at once. I think in the past all has been on the left side, but not really sure. At least on the same side during the entire period.

Some other stuff also, but my question is rather on what seem atypical of CH:

1. Pain in the temple seem to be common. However I have little pain here. I would descrive the extreme pain to be behind my eye(like someone trying to jack it out with a spoon or similar) and directly behind my ear canal (like a screwdriver beeing stuck in there). Is pain in the ear common? From what I can find it is not...
2. Only after reading about it I can admit to having a moist and red eye, this was not something I have taken notice of earlier. My eye seem to get wet (only had two attachs since I became aware to look for this) but not enough for tears to run down. The eye seems to be more red, but not something that I would say is striking. No droopy eyelid.

I realize the symptoms are very individual, but would anyone say that the presence of ear pain and the absence of shadow symptoms points in a different direction than CH? My doctor did also prescribe an MRI to be on the safe side, but I have had a few MRIs of my head in the latest years in other settings and nothing scary were found there.

Any insight is appreciated. For me, lyckily, I would classify this as manageble for the most of the time although I am finding myself rejecting social interactions due to the inconvenience of the attacks and my following "grumpy" mood. Still, any medical aid in coping with this would be extremely welcome, therefore I am trying to qualify/disqualify my GP's diagnosis (think it was the first time she had given it) so we can look in the right direction. I have a nasal spray (zolmitriptan) to test our, so when the next one hits me I'll see if that helps.

Sorry, my intention was to make a short and specific question but my word-diarreha got the best of me  

BR,
Tom

Yes,

Your symptoms do align with some Cluster Headache sufferers. Different individuals have variations in the perceived center of the pain. Behind my eye and the midpoint between my temple and the top of my head were ground zero for me. As the pain ramped up, my upper teeth/jaw and neck on the same side, joined the party.

HOWEVER: Mr. Potter is offering very smart advice. You really need to see a headache specialist to rule out other causes - which can be life threatening.

I jumped in on this thread, because I see more and more doctors diagnosing Cluster Headaches when they run out of other ideas......

Unfortunately, a solid diagnosis of Cluster Headaches is most often reached only after ruling out other potential causes.

Hope your head treats you better, soon!

Marc

Like others have said! "Best to check in with a Headache Specialist", but In the meantime take the cluster quiz! This might help answer some of your  , the link is to your left, 4th down from the top on this page. 

Hoppy

For me, it happens, but is very rare. It feels like an electrical zap down the ear canal and it almost brings me to my knees. It is very short, 1-3 seconds. I have had it happen 6 times over hundreds of headaches.

Tom - I used Zomig almost daily for three years.  For me it was a remarkably effective abortive, and the only thing other than oxygen which provided any relief.  It does take some time to kick in, make sure to take it at the very outset of an attack.  It works by constricting the blood vessels in the brain, so don't plan on much activity for a few hours after you take it.  In my case it generally took about 15-20 minutes for full effect so you are in for a little bit of pain while it gets to work.  Its also incredibly expensive, so you are going to have to work with your insurance provider to address the cost issues, and how many doses they will cover.

I echo the comments about a Headache Specialist.  Ask if they have other CH patients, and what approaches they find successful.  See if the Specialist is willing to run through the full range of treatments.  Since your GP has called for a brain MRI and provided Zomig you are off to a good start, he/she at least knows something about CH.  Take it to the next level.  There are ways to beat this thing, it just takes knowledge, patience, and a willingness to think outside the box on occasion.  Best of luck to you.

Many thanks for all replies!

I have a meetign with my doctor after the MRI, I will make sure to insist on getting a referral then to a specialist.

I am based on Norway, Oslo area. If anyone has recommendations I am all ears

I did my first attempt on Zolmitriptan just now (dont use anything else), for a minor attack (probably no more than a 3 I'd say). Seems to be working as the pain is close to zero now. Since I got the prescription I have two almost pain free days, so I was primarily curious to see if it has any effect. As pointed out it is rather expensive(I paid around $70 for 6 doses) so for the future I will likely not spend it at this pain level. "Excitement" got the better of me :p

I did discuss oxygen with the doctor, but this was rather she reading from the catalogue as we were discussing and seeing oxy mentioned as one potential. We decided to wait since the nasal spray seemed easier from a logistics point of view. I'll take notice on the comment regarding energy drinks or caffeine for future reference. Right now the attachs are coming when it is time to go to bed, and my experience with caffeine and sleep is that they don't mix very well.

CDog, the electrical zaps you refer to is perhaps what is affecting me the most apart from the general pain. I will go out for a walk when it comes, and these short zaps (less than a second it seems) will cause my knees to shake. Haven't fallen over yet when walking, but definitly throws me off my game.

In regards to the CH Quiz, I have 1-8 all no, and 9-16 with 4 to 6 yes, some internal debate around the word "normally". 9, 10, 11 and 16 is definitly yes, while 13 and 15 is a bit trickier to judge. For this period it seems like the ramp up time ranges from anywhere between a few minutes to an hour.
I noticed a droopy eyelid today, around 3 hours before the pain sat in. Wasn't very apparent, and since I have not considered the relevance of such symptoms up until yesterday it is hard to say.

Anyway, as proposed I will focus on getting an appointment with a specialist to get their verdict on it. All the insight you have shared is highly appreciated.

Tom

TomAD wrote on Apr 2^nd, 2016 at 6:06pm:


Since most of your attacks are when you are at home, about to go to bed, this really makes the logistics a lot easier. Just keep your oxygen set up next to your bed (or somewhere nearby), so the only time you move your cylinders is when you get new full ones or are returning the empty ones.

If you get them out, then consider if you can leave your cylinder / O2 set up in the car and just head to your car if needed.

The big benefits of oxygen is that the price per abort is a lot less than other methods plus you can use it as many times a day as you like, plus it can work in a few min.

Then you can save the spray for when you're out and about, away from your oxygen.

Most doctors seem very reluctant to suggest oxygen, but most of the reasons they suggest are more based around issues for those using it all the time, not for just a few minutes at a time like we use for aborting CHs.

For all you need to know about oxygen, look at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Tank sizes can vary a lot from smaller than scuba tanks to larger.

And getting a diagnosis from a headache specialist is very strongly recommended.

Some cluster sufferers have non-classical symptoms. I'm one. I mostly feel it is in occiput, but if I mentally block that out I do feel my eye wanting to explode. I have also had occasional feelings of knife through ear drum or knife in the throat. Variety is the spice of life!

Oxygen is the #1 abortive. The triptans are great but expensive and also have side effects. I would get heart palpitations, which are not dangerous, but over time I seemed to have more and more palpitations and I don't like having a major organ that my life depends on affected so much. If you're with a doctor who isn't prescribing oxygen, you're with the wrong doctor.

I never had stabbing ear pain. However my hearing is intensified like a Super Hero as I can hear and identify sounds, words, etc from far distances.

and also close distances too! I often hear tiny little cracking/popping type sounds inside my head/neck when I move my head. Strange, but true only when i'm in cycle.

-Gregg in Las Vegas