My wife of 13 years suffers from what you all call "the beast".  She said it started when she was 6 years old.  Her Father also suffers.  For 15 years we have been "doctor shopping" trying to find anyone that could make the migraines go away.  At Emergency walk in the last time, for her injection (I do not know the drug) the doctor said Cluster headache.  So I started to research ... Regular reoccurring pain, originates behind the eyes, tears, tooth pain, pain that is described as the worst ever, (making child birth without drugs a better option), even had thoughts of Suicide (she did not say when or if it is/was a reoccurring thought)... So it seems Clusters are worth looking into.

History...They thought she may have MS, LUPUS, random Autoimmune issue, so we have been to dozens of specialists, always mention the headaches, always blown off.  Good thing is, MRI and CAT scans are clean and normal. 

Over the years she has been on "everything" for migraines.  The drugs to prevent them do not, the drugs to stop the pain, do not.  All she gets are awful side effects, or doped up and jittery.  She has given up on finding anything that helps.  The injections are only a worst case thing, she has had 3 this year already.  After the injection she is doped, sleeps, but usually they are gone when it wears off.  This comes after 3+ days of varying degrees of pain. 

Her episodes are nearly Monthly (but we have not tracked them) she calls it hormonal, occur every month.  It seems from the outside looking in, every other month is worse.  the pain lasts from 3 to 7 days, with and increase and decrease in intensity, until they finally fade away. 

So, I will be reading a lot over the next few weeks, but the big thing I want to know, is how do I find a doctor that treats Cluster Headaches differently than saying they are just Migraines and tries to go through all the migraine meds that have never worked for her? 

We have 3 kids, and we need to get the beast into the closet, then we just have to focus on the Fibro/lupus/whatever problem. 

Thanks for dealing with my long post,
Bryan

If you haven't already, hop on over to OUCH (Organization for Understanding Cluster Headaches), and look at the doctor's list.  Maybe you can find a knowledgeable doctor in your area.

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Best of luck to you and yours.

Bless your heart for being a strong supporter, would never have found this site if not for my wife doing the research.

Your best bet at an accurate diagnosis, and an effective treatment regimen, is with a headache specialist neurologist. GP's get about 4 hours TOTAL training on headaches in med school, that covers the literally hundreds of headache types. Your chance of finding a GP with a good knowledge of CH is really slim. Sadly, your garden variety neuros don't get much more training then that. So the headache specialist is your best bet.

If she is not already doing so, start a daily headache diary. Pain free days are marked as such. When she gets an attack, when does it start, how fast does it build, how high does the pain go, how fast does it reach peak pain, how  long does it stay there, how fast does it recede. Try and differentiate between the headaches, and the "headache hangovers" the recovery time where everything is just sore.

Try and identify any triggers, stress, alcohol, aromas, foods, sunlight, the diagnosis will be in the details. A good diary is a great diagnostic tool!

Thanks again for doing the legwork, supporters  are golden.

Joe

Hi Bryan  [smiley=hiya.gif]

Pat and Joe have already given you great advice.

Sounds like you guys have your hands full, but we're all here to help.  We'll do our best to answer any questions you may have.

You guys should check out the Oxygen tab to left.  Oxygen is a great and very safe way to abort an attack. 

Thanks everyone ... I am so confused :) 
I read these cluster headaches behave like this:
Come on fast and hit hard inside of 30 min - CHECK
Go away just like they started - CHECK
Leave you exhausted, need recovery time - CHECK
Focused behind Eye/temple - CHECK
Last between 15min and 3+ Hours - NOPE
Do not change in intensity - NOPE
Clusters come in regular intervals - Monthly
Walks around, bangs head, etc - NOPE

about my NOPES:
Her headaches will last for 1-5 days
She says the intensity can vary through those days, it is never gone but it can be light and she can do anything, and it peaks to the point where she just sits or lies down and can do nothing.  In that mode I have a sock filled with rice I heat for her in the Microwave, the heat and weight of the rice seem to have home benefit. 
She describes the pain, origin of pain, intensity of pain, just like the descriptions here.  Wost pain she has ever felt, Ice pick jammed into her head behind her eye, she wants to tear he skull off to relieve pain, I'd rather be dead than endure this.  Last doc asked her, on a scale of 1 to 10, 1 being no pain, 10 being child birth, how do you rate the pain, she replied 15.  Not a typical migraine description.   

Anyway, I will read on.  We have an appointment for Jun 8th with Dr. Edmund Grant, Neurologist that has an interest in Headaches.  We have a friend that referred us.  *sigh* 

Confusion....her name is CH!

The majority of us have something about our CH that doesn't fit the "perfect" pattern. I've never been a real "head banger" either. When I'm getting creamed I do the double arm wrap around the head, fetal position, bicycle kicking routine.

Regular intervals...for the first 20 or so years they were setting the atomic clock by my cycles, spring and fall 8-12 weeks, 1-2 hits a day. I hit my 40's they went all over the board, 2 year remissions followed by 8 month cycles. So yeah, frustration. :-/

I am not a doctor and have never even played one on TV,  ;)   but it's also possible she's a double whammy sufferer. We have several on the board who suffer from CH AND migrains. This makes the diagnosis even tougher when  you start talking multiple issues. I'm glad you're getting to a neuro with some headache experience, it'll go a long way towards an accurate diagnosis. Wishing you luck and speed with that.

Joe

Hi Bryan, so glad you are here to try to help your wife. Getting a proper diagnosis and treatment program for CH can be just as frustrating for the supporter as it is the sufferer. (I'm wife & supporter of Guiseppi.)

The OUCH website also has a good headache journal. Your wife should start tracking *today* (if not before) so that you have good info for the doctor. Also get together a list of the meds she has tried, their purpose (prevent vs abortive) and the dosages. Good to note that it sometimes takes a few weeks of the meds in the system to take effect, so if she gave up early, may be worth revisiting. Many docs also under-dose someone, so looking at the dosages is important too. Here's the link to the diary.

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So glad to hear that you guys have an appt. on June 8th.  Hang in there...it'll be here before you know it. 

Joe made a great point about some sufferers having several types of headaches.  My hubby is one of them.  Seems if he's not getting hammered by CH, he has a migraine dragging him down or he keeps getting the twinges of the ice picks.

Bryan I commend you for getting educated about CH.  I can tell you are a great supporter  :)

Thanks for all the encouragement, links, helpful ideas and just support.  it is always nice to know people are reading your tale, and responding with encouragement, support and understanding. 

I do fear that Tracy suffers from multiple types of headache.  There is what the doctors call a swollen gland on the bottom of her skull, back of the neck area.  It is the size of a superball (bouncy things), she has headaches originate from that specific spot, as well as the headaches behind her eye (CH we suspect).  I will have to work with her more to understand the differences, if any.  As I read, I only realize there is so much more that I have no idea about.  I could talk to her for hours, making notes about all this (we did the same as we tracked down the lupus thing), but understandably, she does not like to talk about any of it.  She is sick of doctors sending her in circles, and never feeling any better. 

Lately she has been getting an IV treatment of Vitamins called Meyers Vitamin Infusions.  These do a tremendous job at keeping her fatigue away.  They infusion (90 min) is followed by a massage.  Apparently, this process can be a trigger.  We think we have figured out it has to do with the rate of infusion (needs to be noted for the DOC).  So she is working on getting the IV drip turned way down in hopes it stops the trigger, but they do help her get through the week.

I can talk about her all day long, if I can find anything to improve her Quality of Life, I will talk to everyone to find it.  Anyway, thanks for all the information and leads, it is much appreciated! 

You're a good man!!!

It gets more interesting as time goes on...

Her Dad came over for Dinner Sunday, talk turned to the headaches so I took advantage to ask more questions and to see if both of them talking together could open up to more information. 

He has been diagnosed by Doc as to having Clusters, so far has not really had a medication that has helped, but they did change his Blood Pressure Meds and that has helped "headaches" but not sure if it has changed these clusters any.  But we did get to talk more about the patterns, and it seems there is more pattern to the my wife's than I thought.  She does get them while asleep, as does he, and they will wake them both up.  Attacks will come and go through the night.  with a pattern of days that this happens.  Interesting they both talk about pain throughout the day, not sure if it is residual from the night, a different headache, or more clusters throughout the day. 

Anyway, will be sending a link to here to him, so he can start reading up on the O2 stuff.  That may be something worth looking into, and for an investment of under $200, why the heck not try it?

:)  Thanks again everyone!

Keep spreading the word! In dad's time, treatmnents were pretty limited and many people just gave up on docs and learned to "gut" through them. Let him know the treatment options are considerably greater now then in "the old days!" (I can call them that since in the early 80's my treatment regimen was lidocaine drops, vicodain, fiorinal and cafergot!)

Joe

Quote:

You're a good man!!!

I'd like to second that thought.  :)

While most of us women with cluster headaches have a wonderful supporter in our husbands, not many husbands come here looking for information on treatments or ask questions like you have done.  I commend you very highly.

When they talk about pain during the day, they may be referring to what we call a "shadow"   CH as a rule doesn't last for more than1 to 2 or 3 hrs.   A shadow which causes pain, tends to be on the lower pasin scale and does last a long time.  IT'S pain is pretty consistant, unlike CH which starts out mild asnd then ramps up to extreme pain, stays there for a while and then slowly ramps down til it's gone.

Please update us after she's seen the doctor.  We'll be curious to know how he/treats her.

Linda

Well the beast has returned ... Came first on Friday night, and returned Saturday night.  Friday was not "that" bad, she took some Ib and it seemed to help, she was able to sleep within 90 min.  Sat night was worse.  She is still in bed with a headache, not as strong as last night, but still bad.  What ever she took last night did nothing to help.  She said, as I pushed the kids out of the room and locked the door behind me, that it is bad and gets worse if she stands.   

On a side, she did say that her teeth hurt all day Sat, but she never reached for Ib or complained.  We had a cub scout outing and went to see the BIG Cats in Sararsota, then went to the beach, had dinner, great day.  I woke up at 1am, she was not in bed, and the bathroom light was on ... that is usually the only way I know something is wrong, she never complains or wakes me up. 

I will try and get her to log the events of the weekend.  She HATES doing these logs.  We have done them several times in the past as we were tracing weird symptoms that at the time they thought may be MS, and now thing it is fibromyalgia and some relative of Lupus, but they are not sure about anything.  I woke up last night wishing we had an O2 bottle!

I'm sorry to here that she had a rough weekend  :'(

I know she hates logging all that information, but it can be so useful to the doctors.  I believe you said that she has an appointment on the 8th...only a few more days and hopefully they can find something that can give her some relief.  Also don't forget about asking for O2...it's such a great abortive.

We went to the Neuro the other day, total disaster. 

He started off asking about the headaches, she game him the mile high version.  He asked a couple follow ups, but they did not get into the details of the "bad" ones, only that they are behind the left eye, happen regularly, for a couple days, around the time before her period, and they wake he up from a dead sleep and can last for days and only an injection from ER can stop them, and that does not always work.

Then he started asking questions about her ... how do you sleep...Not well, the baby wakes us up a lot (almost 2years old).  he says, lock the door.  We can't do that, the baby is in our room, then put her in her room, she has a room, right.  She sleeps in our bed... "Oh you are one of those.  Would you consider yourself normal or not?"  WHAT? "Well family bed type people generally fall into 2 groups, normal people and not so normal people, most are the latter, are you normal"

At this point I am starting to be not so happy...Sure, it would be nice if she slept in her bed, but hey, don't judge us. 

Then he goes on, "Do you work?"  Nope.  "where do you leave the baby during the day?"  Excuse me? "Do you put her in day care, do you have her in preschool, what do you do with her?"  Umm, my wife is home with the baby, her job is to raise our family, not drop our kids off at day care so others can raise our kids and just leave us with dinner, story, bath and ed time. 
"well you need to have 3 hours a day to your self, you need to leave your baby somewhere else, do you watch or read Glen Beck?"  NO! WHY? "well he says in his book (states book name) that at 2 years old all parents are doing is suicide watch, and are preventing kids from killing themselves"  He chuckles, quite proud of the joke, and proceeds to go on...He wants to give my wife samples of 1/2 a dozen prescriptions and starts to explain them to us... I ask if she can take these while breast feeding.  He takes the drugs back and says "oh, you are really one of those.  You know breast feeding is good and there is a spectrum of how mothers breast feed.  There are great benefits with antibodies and such, but the vast majority stop before 6 months old."  Now my wife it totally on the defensive, pissed off and it is apparent on her face by that look of horror and shock and just utter unbelieving look that she is hearing the bull shit.  (sorry)  He ranted on for a minute or two and then said, "when you want to get better and stop breast feeding, and you will, because there are no 18year old girls still breast feeding anywhere, you can come back and see me."  He then looks at me and says "your wife is doing a wonderful job, and is going to raise some very loving and affectionate children."  Was that trying to defuse the BS he has been spewing, or is that filled with sarcasm and he is again letting us know he has passed judgement upon us because he is not liking the choices we make as parents? He even went on to ask what her plans were after the baby goes to school.  She said, well if I can, I will stay home, be involved in school, and take care of the home.  "No going back to work?" Not if we can avoid it, no.

He wrote us up an order for an MRI because the headaches wake her up at night.  I said wait, what is wrong here, what kind of headache is she having, it is a combination what?  He mentions ocular.  I asked specifically about Cluster, saying, what she described to you is lacking in detail compared to what she describes to me.  the "Bad" ones come at night strong, no meds do anything, usually, then they go down, but not away, she gets back to sleep.  She will go through this wave cycle for days, she can function, then she is in bed, she can sleep, she is awake searching for anything to make it go away ... DAYS. 

He said "nope not Clusters.  She is a woman, very rare, and if they were clusters they would last weeks, then be gone months and then return.  she does not fit the pattern, go get the MRI, see the acupuncture doc, and come back when you are done breast feeding."

And that my friends is why my wife has given up on doctors.  He has basically determined that the headaches are from disturbed sleep and lack of self relaxation time.  He totally discounted that she has had migraines since age 6 and these clusters since before we had kids, but sure made us feel like all our choices in life have created this situation.   A big ol F-U doctor closed minded and everyone needs to be like me.

*sigh*  Back to the drawing board, now with even less momentum from my loving and hurting wife.

Well that doc sounds like a real jackhole  >:(

Sorry you guys had to go through that  :'(

I don't know if you went to the OUCH site and checked out their list of doctors, but I'm thinking you guys should maybe think about seeing someone else.

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Hang tough you guys.

A loving reminder: There are some egotistical jack asses out there in the medical field. There are also some loving. caring, dedicated docs. Sounds like you landed on the former. Don't let that frustrate you to the point of giving up. A minor setback on what you already knew was a marthon, not a quick sprint.

Sending warm wishes for a better landing next go round. [smiley=hug.gif]

Joe