I went to the doctor after a headache started 5 days ago, keeps going away and coming back.  It is ungodly pain. The doctor said I have cluster headaches. He gave me some anti inflammatories and muscle relaxers and sent me on my way. The inflammatory is for a "swelling at the base of my left side of my skull".  The headache is gone right now, but I have a sinking feeling it will be back in just a few hours as it seems to hit at 11pm and again at 4 am.  I have to go to work tomorrow, I have to figure out how to function.  Do I just wait for 11 and head to the ER so I can get something?

-my doctor prescribed NSAID's, I am a gastric bypass patient and can't take them anyway.  I may need to switch doctors...lol

First you must educate yourself about what CH is. From what your Dr. has prescribed he/she knows little about CH.

Read all you can on this site to find what most of us use to treat CH. Describe one of your attacks to us. Misdiagnosis is common for CH.

Research Clusterheadaches to help you be sure this is what you have. If you do there is help here. Knowing where you are (state or country) can help us help you.

Don

Sorry, I wasn't sure what all to put on here. I am in Nashville, Tennessee.
The headache I got early Christmas morning was in my left eye/temple area...it was an excruciating stabbing pain that woke me and caused my eye to water.  I ended up taking 4 extra strength tylenol, with no help. About an hour and a half later, it went away.  I felt really drained all day, then at about 11pm it came back.  Like someone ran at me with a railroad spike.  Laying down made it worse, I felt naseous but didn't throw up.  I finally dozed off, sitting up at about 2am.  Then it happened again at 4am.  I thought maybe I had a sinus infection or something. I tried sinus medicine, tylenol, etc. Nothing helped. Even thought the unbearable pain backed off, I felt drained and like I had a mild headache, just hanging out.  The next day, I woke up feeling weak and blecky...almost hangover-ish. At about 9am the headache happened again.  It has gone on since Friday, 2-3 God awful brain pains at night, 1 or two during the day and nothing relieves it. 

This is not a normal headache. I used to suffer from migraines, but these somehow are worse.  I almost had my hubby take me to the hospital, I was sure I had an anyurism...lol.  Now I am terrified if I go to sleep it will come back, I can't miss any more work and I have that dull achy headache again, so I am afraid the stabbing, horrific pain will come back.
I am sorry this is so long, I was just trying to give you all the info I gave the doc today.

Damn....I can see why he said cluster headache....sure sounds like it to me. While he recognized the symptoms...a good sign...he is completely clueless about treatments...really bad sign.

For now, get some energy drinks, rock star, monster, any containing caffeine and taurine, pound one down at the onset of your symptoms, many can abort or substantially reduce an attack that way.

Find a headache specialist. Doctors get about a total of 4 hours of headaches in medical school. Not enough. There are hundreds of headche types, and it's even a tougher diagnosis if you have multiples, migrain and CH etc. So a headache specialist is critical. Start a headache journal, when they start, how fast they build, how high they build how long they stay at peak, how fast they fade. Try and identify triggers...avoid alcohol an almost universal trigger!!!

If it is CH, get oxygen prescribed so you can have it at home. Read the oxygen info link on the left as it must be used correctly to be effective. After 31 years of these things oxygen is still my first line and most effective abortive, I can kill an attack in under 10 minutes.

Sorry you had to find us, no doctor here but damn, sure sounds a lot like CH to me. :'(

Joe

Yep doctors are a real problem indeed when it comes to CH.

I sure hope you have better luck than I did last summer searching for a headache specialist in Nashville, but at that time it was the typical scenario for me that plays out all over the country: A headache specialist won't see you for a couple months, at which time your CH episode will probably be over.

Worth trying though! Things could've changed or opened up by now. Back then I had no luck with Nashville Neuroscience Group/headache specialists Jan Lewis Brandes, M.D. I'm calling them out as the worst sort of greedy, callous scumbags, not just because they won't even consider you without a referral, but because they engage in the crimminal activity (IMO) of making people in the throes of what is generally considered the worst pain known to mankind wait months for an appointment.

Vanderbilt was a dead end also.

OK so thats me venting about the sad specialist state of affairs, but now onto the better news - I did find a neurologist who is pretty knowledgeable about CH when I called up St Thomas Neurology Group at (615) 383-8575 and asked who their headache person was. That would be Rejane Lisboa, and I was able to get an appointment within a few days. I've had Ch for 30 years and pretty much know what works for me so far, and what to ask for, but her ideas appeared legit - she was bringing up stuff like Verapamil and a prednisone taper (I already had an imitrex prescription). She's also very nice and friendly.

More good news is that you CAN get significant relief for these CH attacks. You'll see a lot of O2 enthusiasts 'round here for good reason. it's important to follow this info to the letter: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Another mainstay, albeit not as safe as O2, is imitrex injections which are practically guaranteed to abort a CH attack. They are expensive, but this tip here helps tremendously with conserving supply and reducing risk: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Thats just for starters! There is all kinds of stuff that can combat CH that will be revealed on this site, and I'll leave just one more tip for now: It's colder'n heck here in Nashville right now (well maybe not so much today  :() as you well know, and when you're at the beginning stages of an episode breathing very cold air can abort a hit!! I'll do this with deep breathing, nose to the blasting car A/C in the summer, but for your night time hits especially you can just step outside and breathe through the nose, hyperventilating or close to it. There's a real chance you'll see that hit gone in 10 -15 min, replaced by a very comforting in comparison ice cream headache.  :) You'll probably want to have some warm clothes all set up and ready to jump into, because it's important to launch the cold air counter attack right at the onset.

For fairly cold daytime weather, I think I might jump outside and launch a run around the neighborhood, breathing thru nose. You could keep your running gear on and be ready to blast out the door.  :)

Quite essential to get a good headache doc on board; to get an accurate diagnosis. Only then can you find guidance to effective, long term treatment.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
=======
This is an excellent first read to help you understand Cluster (IF, in fact, that turns out to be what you have.)

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Java...our Lacey in here is from  just SE of Nashville, perhaps you could PM her, and see who she goes to.  Might help.  Good luck.   

Dr. Constance Johnson

Clarksville


E. Arthur Franklin
Memphis
 
Jan Lewis Brandes
Nashville

 

Dr. Michael DeShazo

Memphis, TN

According to Jayne, Dr. Constance Johnson is the best of the best. She is in Clarksville and her number is  931-647-2828.

Interesting about Constance Johnson. I had started to make an appointment to make the trek from Nashville to Clarksville to see her last summer, but didn't go thru with it because I was getting the CH under control, plus I became a little wary when I saw her website was all about migraine and BOTOX, with BOTOX mentioned inn caps 6 times in the "welcome" blurb alone, with no mention of CH anywhere on her site.

I guess you can't necessarily judge a doctor by her website. ;)

Welcome!  Sorry you are here but glad you found the place. 

I live about 60 miles southeast of Nashville.  There is a headache clinic in Nashville. Jan Lewis Brandes Nashville.  The information on the left of the page does include this center.  I have never personally been to this place because I have a general practitioner that is very realistic and good to me about supplying me with what works if I go to him supplied with the information available here.  However, I do travel in and out of the country a LOT.  So, as my cycle was ending this time, I was going to be traveling, and have the appointment set up for when i get back to the states.  In March.  It was my request for it to be this length of time due to the ending cycle and my traveling, so I have no idea of the wait time.  The only reason I have decided on accepting an appointment when I have a gp that is really accomadating, is the fact that i do not want to be the 1 recommending my treatment all the time. If someone sees a lot of this condition, then i expect them to have a bit more knowledge in my treatment.

Since joining this site, I have educated myself and asked sooo many questions, to learn to better treat myself.  I only became aware of a headache clinic going through the information here.  I did see a neuro years back and he was as useless as tits on a boar.  I do not recommend a neuro because of my experience.  A good headache specialist or a gp with the willingness to learn is the only way for me. 

Remember..YOU are your own advocate!!! Sometimes you have to make yourself a nuisance and worry the shit out of the Dr.  If you cannot educate your Dr, then it's time to find a new 1. 

Lacey wrote on Jan 5^th, 2010 at 1:41pm:

There is a headache clinic in Nashville. Jan Lewis Brandes Nashville.  The information on the left of the page does include this center.  I have never personally been...

OK I'm still seeing a couple references to to Jan lewis Brandes in the replies here, but again, as of a couple months ago, the nice way to describe her services for an episodic CH sufferer is "useless as tits on a boar".

She makes you wait months for an appointment.

I hadn't seen anyone post of that clinic before.  All I knew was there was a headache clinic in Nashville which was closest to where I live. 

So you are saying, that that clinic is not good?

Really want to hear this because as I stated in earlier post..i do have an appointment with that clinic in march.  and if im just going to go in there and get pissed off because you have to deal with idiots..ill just cancel my appointment and save my bail money. lol

No response necessary to that last post beje..just read what you posted..i was trying to reply to java before reading the rest of what was posted.  Sorry my mistake.

Now, after reading your post completely, I can see ill be canceling that appointment and I honestly dont know if i want to be seen by anyone else.  (my sentiments are if you have a gp willing to work with you and its helping..y go elsewhere?) but then again ive already answered that question i guess.  Id like for a dr to offer ME suggestions.

Thanks for the input of experience and also, sorry for jumping the gun.

Well despite my angry railing against Jan lewis Brandes, I think if I were you lacey I might actually keep that March appointment.  :D

Thats because I don't know anything about that clinic except for their policy of turning away CH sufferers who are in the throes of an episode (such as the original poster Java), which clearly is a big HONKING pet peeve of mine :P.

Maybe it doesn't say much about the level of care once you get in there though, since this same crime is routinely committed by many (if not most) other headache specialists (??).

Lacey,

You might try some melatonin at night (some take 6mg -- depending on YOU - I take anywhere from 6-15mg). It gets you thru the REM sleep and helps you rest at night to get you thru the days. (At least it does me). Sometimes it takes a few days to start working so don't give up if it doesn't work the first time you try it.

And the energy drinks at first sign work pretty good.

Instead of the Tylenol try Excedrin ES (I take three with a cup of coffee). This will sometimes abort a CH for me if I hit it soon enough BUT don't do it too often because it will cause rebounds. It's for EMERGENCY use only. (Excedrin is loaded with caffeine).

And go to the neuro ARMED with infor (read read read). WE have to be our best advocate with these things. The best neuros will LISTEN to us. Remember that.

Wishing you PF time real soon..

Hugs BD :-*