Given everything I have read I am 90% sure that I am experiencing are cluster headaches but the doctors are useless at this point.  For nearly 3 weeks I have had a dull headache that comes and goes, with it I get these fierce, sharp, terrifying, stabbing pains on the left back side of my head, when the pain hits my face go bright red and hot and once the pain settles down so does the red face.  After 4 days I went to the hospital.  They did a CT and said it was a sinus infection (I have not had any sinus trouble what so ever in months, not even a cold) and they gave me antibiotics and sent me home.  The medication ran out, the pains stayed and I went back to the hospital 3 more times (they were there afraid I had meningitis, which I don't) and are now calling it "chronic pain".  Pain medications do not work on this pain and its now also effecting my neck which seems to get sore and stiff with the pains.  Not knowing what to do I started researching and cluster headaches seem to fit.  This is not something I have experienced before.  What does anyone here think, might I be in the right place or on the right path?  I do have a doctors appointment but its over a month from now....

Welcome to the board Shadows, what Lance said! There are hundreds of headache types. Doctors get about 4 hours TOTAL education in doctor school, on all headache types. Your typical garden variety neuro does not get much more. So if you have a typical migrain, tension, or sinus infection headache, no problem they know just how to deal with it. Anything more complicated then that and you're asking the pump jockey at your local service station to rebuild your transmission......your chances of success are pretty slim.

You need to locate a headache specialist neurologist. This gives you the best shot at an accurate diagnosis, and an effective treatment regimen. If you're not already keeping a headache diary, start one now. The more detailed it is the better, the diagnosis for many headaches is in the little details.

Wishing you speed and luck on the diagnosis, and some pain free time soon.

Joe

Lance-

Shadows....I read that some place else too but didn't fully understand it and wasn't sure it was a real thing.  Of course until all of this started I didn't really think that a headache that was not the result of some sort of head trauma could ever be so painful or last so long or have these insane spikes of pain.  I will have to read more about shadows (funny since my nic-name is Shadows).  I do have an appointment to see a specialist but its not until the end of February, in the mean time I am going nuts with this.  I actually thought that maybe it had stopped earlier today but I was wrong....

wimsey1 wrote on Jan 4^th, 2012 at 8:21am:

Bob-

I am not 100% sure what your asking me to do.... 

I am located in Puyallup WA, I have no history of any headache that didn't either go away on its own with in an hour or so or with a Tylenol or something similar, I am healthy, and this all started completely out of no where.  I do have a regular doctor already and have an appointment with a specialist near the end of February.


Bob Johnson wrote on Jan 4^th, 2012 at 9:23am:

I checked the OUCH site yesterday and sadly I am not seeing one of those doctors (Seattle isn't really close either, but its the closest big big city) and my regular doc has to refer me to a specialist or my insurance wont cover it but it is possible that they may refer me to Seattle.  They have no openings for a new patient until my appointment and flat out told me that if the pain level goes above a 7 that I should go to the nearest emergency room (where I have been 4 times) and that would result in me going there every single day.

I tried to take the cluster quiz but there were questions that I couldnt answer because this is new and has never really stopped since it started, well maybe for an hour or so has it stopped but then it starts up again....

Thanks for reading and helping.   

**update, I was thinking of a different cluster quiz I had tried to take someplace else.  Just did this quiz and answered all but two of the "cluster" questions with a yes**


LasVegas wrote on Jan 4^th, 2012 at 6:58pm:

LOL, maps can be deceiving. 

Actually my ER visits are fully covered as long as I have called my regular doctors office first and have been told to go in (go figure) and my regular doctor appointments are 75% covered.  I believe that one of those docs are part of my plan but I have to be referred from another doc, which is the issue.  Blah.

When the pain is stabbing I have noticed that I crave warm (not hot or cold) coffee, black, and that does seem to help a bit.  I dont normally do energy drinks but I will try some tomorrow!!


LasVegas wrote on Jan 4^th, 2012 at 7:35pm:

shadows1177,
Is the specialist you have an appt with the end of Feb, a headache specialist/neurologist?

A headache specialist/neurologist is the best specialist to visit regarding CH's, but often an internist or PCP (Primary Care Physician) should be able to prescribe you something to tide you over until your appt the end of Feb.

I wouldn't accept the end of Feb as your only option, unless you enjoy the pain.  That was sarcasm, but I am serious too.

Your regular doctor should be able to prescribe Prednisone, Verapamil and Imitrex injections, along with o2.

The only thing you have to lose is your sanity, patience, relationships, marriage, kids?, job?, etc.  I, like many, have lost many of these life attributes due to waiting too long, misdiagnosed, trial/error of meds, ignorant doctors, etc.

You truly need to be a self advocate and fight for yourself.  Take a look at that cluster quiz again.  You really should be able to answer all of the questions, regardless of how new you are to this pain.  Share your answers here with us.  What questions were you not able to answer?

"Knowledge is power" and this website will educate you to educate others.

Plenty of credible info to print and share with regular doctors, neurologists, employers, ER rooms, insurance co's, etc.

If you wait, odds are against you and most likely your condition will worsen.

If you have CH's, you really need a (1) transitional meds (such as Prednisone), to be started at the same time as you start (2) a preventive med (such as Verapamil) and you will need abortive treatment to control the pain when you get attacked (such as high flow oxygen and Imitrex injections).

You need to arm yourself with knowledge so that you can be your own doctor so to say and tell the doctor...no to tylenol...no to pain pills...no to ineffective dosages of known CH meds that work, etc.  Don't settle for anything less than satisfaction.  You have medical insurance, call around nearby cities if you have to travel to get to somebody competent.

i.e. I drove 5 hours each way to Mexico just to get Imitrex as I had no insurance and couldn't tolerate the pain.

Unless you do something proactive, you are just setting yourself up for punishment that can be avoided and will only have yourself to blame if you don't take the bull by the balls and run.

Blunt, but truthful.

You mentioned your pain is left sided.  Is it always on the left or sometimes on the right or entire head?

Do you feel most pain in/on/and behind your left eye?

Do you feel pain in your left side forehead temple?

Does your left nostril get congested or run?

How long does your pain last?

Have you noticed excruciating pain that wakens you from sleep?

Does your pain (attacks) occur at the exact same time everyday and every night?

These are some of the many CH symptoms/things to share with ANY doctor you hopefully get to ASAP.

Can you lie down when you feel the pain and try to sleep it off or is too unbearable and must pain, scream and cry?

Please do yourself a favor and read, ask questions and vent.  Why do I bother writing you all this?  Because I care about strangers who also are feeling TORTURE by the DRAGON.  I've suffered 32 yrs and have been taken advantage of by doctors, misdiagnosed, guinea pig to meds that were harmful instead of helpful, etc far too long until I educated myself through the help of this website and learned to be a self advocate among an ignorant medical community.

Don't be a stranger!
-Gregg in Las Vegas

Blunt but your truthful and helpful to me, so thank you.  Its just a neurologist that I am seeing and then I will likely get referred again to a headache specialist (per their nurse).  My reg doc and the one that I have been referred to are real pains in the rear and really don't seem to care at all.  I did retake the quiz and answered all but 2 of the "cluster" questions with yes...  My being here is part of me researching, looking into what I experience and what others experience as well.  I am seeing my regular doctor again tomorrow and plan to talk to them about some of the medications that I have seen here.  What still leaves me lost is why pain meds don't work, the pain is still there, I hate it.

Do you feel most pain in/on/and behind your left eye?  Its like a pain shooting from behind my left eye through the back of my head, my eye twitches sometimes when I am in pain too.

Do you feel pain in your left side forehead temple?  Its not in the forehead, behind it though.

Does your left nostril get congested or run?  Yes, and to top that off, runny nose on the left side only, twitching left eye, go to sleep and wake up nearly screaming in pain 2.5 hours later.

How long does your pain last?  The dull pain that I have has been there since 12/18 and I have only had an hour here and there with it gone, the sharp pains have been as short as 3 minutes and some have lasted for 10 minutes, my most unfavorite is near my mid work day where I have these sharp 3 minute pain pains come and go for 2-3 hours.

Have you noticed excruciating pain that wakens you from sleep?  It wakes up nearly ever every night, some times its a pain that makes you want to scream but cant because your in too much pain.  I do a lot of moaning and rocking...

Does your pain (attacks) occur at the exact same time everyday and every night?  Not exact but pretty close (with in 10-15 minutes).


Can you lie down when you feel the pain and try to sleep it off or is too unbearable and must pain, scream and cry?  My first thought was to try this, but it didn't work. I cant sleep through this, not even while on all of their pain meds.


LasVegas wrote on Jan 4^th, 2012 at 10:28pm:

I will watch for your PM


Batch wrote on Jan 5^th, 2012 at 12:16am:

shadows1177,
Hope today is a better day for you.  Glad you didn't find my post too blunt.and that you found it helpful, you're welcome

Below is a link to several photos of Batch and I (and my son) from when he visited Las Vegas around Thanksgiving.

In my opinion, and i'm not one to BS around, Batch is the most knowledgeable member on this site and is sincerely interested in helping others afflicted by CH's.

Take him up on his offer in person, but be leary of phone calls unless you have an unlimited amount of minutes.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Let us know how your progress is coming along.  
-Gregg in Las Vegas

I can be pretty blunt myself so.....  I will try and get together with him since we live soooo close to each other (well a few hours give or take a little).  Its just a matter of finding time and a moment when I actually feel like I can drive that far.  I have had to pull over on the highway a couple of times and my husbands driving doesn't help my head one bit.  I have noticed that anxiety seems to be a trigger and I hate being out of control of my situation. 


LasVegas wrote on Jan 5^th, 2012 at 12:09pm:

Greetings,

Aside from making you shaky and sick did the energy drinks help at all with the pain?

Also, you mentioned Feverfew...I had someone tell me that I should using this, this person claimed to be knowledgeable about Cluster Headaches but in a very short discussion realized they knew very little about Cluster Headaches.

Curious as to what you may know about it?

Also, if any others watching thread have anything to add regarding the Feverfew it would be appreciated.

Blessings to us all,

d

As always much gratitude to those that have suffered before us.