Newly (mis)Diagnosed?

[unlimitedvaper]

Hello everyone, 

To start, let me explain the title of this post.  I received a new primary care manager this week and when describing my headaches was told that it sounds like cluster headaches.  No tests have been done to confirm anything yet.  This was the first time I had ever heard the term cluster headache.  For the last few days I have been researching cluster headaches to see if the diagnosis fits, considering I've had so many other diagnosis over the years that never turn out to be correct.

Now that we have that out of the way, my background.  I have had headaches since I was a child, as long as I can remember really.  I don't know when they started, but I remember being the only 12 year old that planned his days around when he could take the next dose of Aleve vs the next dose of Ibuprofen to try providing relief for a headache.  It's hard to remember now whether I would have been described as episodic or chronic at that time, but I can tell you that for the last 13 years, I have had headaches almost daily.  I would definitely be chronic at this point in time, having less than 30 days headache free per year, if this diagnosis turns out to be correct.  

Almost everything I've been reading resonates with me completely and I can relate, the location of the headaches, the sinus involvement, congestion on one side, droopy, red and teary eye.  My one concern in all of this, is the amount of pain described.  Everything I read says that cluster headaches are the most painful thing imaginable.  While I understand that pain is subjective, and I've lived with pain my entire life, I don't know that I can describe my headaches this way.  So my concern is that I've been misdiagnosed again and that I will never find relief.  

Can someone chime in and explain to me, is the amount of pain a diagnostic criteria for this?  Or possibly attempt to describe the pain you feel in relation to other pains on a scale of sorts.  For example, my headaches are more painful than the pain I felt when I broke my foot, but less painful than the pain I felt when waking up from abdominal surgery.

[CHfather]

I guess I would suggest that amount of pain is a diagnostic criterion, but that you ought to treat it as CH (or perhaps as hemicrania continua -- see below) and see what happens.  You don't describe the nature of your attacks. Do you have head pain all day every day, or do you get some number of attacks each day?  If the latter, how long do they typically last?  Are you able to sit or lay still during them, or do you need to pace or at least rock back and forth?  Do you think the Aleve or iboprofen, or whatever you are taking now, actually helps them?  What are you using now?  Surely someone must have diagnosed/misdiagnosed them as migraine and given you something, such as Imitrex?

If you have distinct attacks that last some number of minutes of hours, can you get oxygen to try?  Oxygen is effective for a very large percentage of people with CH, but not effective for most people with most other headache conditions. 

Have you ever taken indomethacin?  That works to treat a CH "lookalike" condition, hemicrania continua (HC), but it doesn't work (hardly ever) for CH.  Also, HC pain is generally less severe than CH pain, with occasional episodes where the pain worsens. Sounds like this is a possibility for you, and it is easily diagnosed through your response to indomethacin. Here's a link to some HC information: https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/

[filacibin]

sounds like migraine,the reason i say that is the same as your reason!,this pain is on a scale i can not put into words how

strong these things are!have you checked out any youtube vids of the attacks?i cant watch them they are horrid reminders

but anyway mate lets just hope you do have bad migraines ,and hope you can find some answers on this site.also try mm treatment

see if helps as i know any kind of headache is bad,especially migraine sufferers !.good luck  

[unlimitedvaper]

Thanks for the responses guys.  I have never been diagnosed with migraines because I've never had the light or sound sensitivity associated with migraines.  My headaches have been attributed to a litany of cause to include stress headaches, sleep apnea, nicotine, sinus headaches, and sleep deprivation to name a few.  I think it's important to note that I am a victim of Navy medicine, meaning I routinely get new primary care doctors and none are ever the cream of the crop.  After reading a bit about HC above, that sounds more like me.  My headaches are constant, all day and more moderate in pain than CH appears to be.  I'm pushing for a neurology consult tomorrow and will bring up both to see what they think, but now that I know there are actual recognized conditions that meet my symptoms, maybe I can get some movement out of these doctors.

[unlimitedvaper]

Just did a search on YouTube for cluster headache attacks and this is definitely not what I have.  I'll go talk to the Dr tomorrow.  Thanks everyone and I really hope y'all find some relief.  

[amon10]

And we all hope you find some definite answers with pain relief. 

[CHfather]

If you do have hemicrania continua, there's a good chance the doc won't have a clue about it.  I'd urge you to bring something with you about it.  The very good news is that if it is HC, indomethacin will treat it; the not-so-good news is that indo is tough on the tummy, and you'll probably need to take another pill, along the lines of nexium, to protect yourself.  All the doc needs for the "diagnosis" is to see whether the indo works or not.

BTW, back to what filacibin said and your response, it's my understanding that you can still have migraine without the sensitivities you mention.  However, it does seem for now at least like HC might be a good hypothesis because of the constant pain you experience.  Again, though, if it's migraine, meds will help (verapamil and sumatriptans), and so will busting (see the numbered files in the ClusterBuster Files section).