Hello all...I thought I was coming out of it (no CH for a week, just these sick migraines) when BAM! I get the red-hot-poker-in-the-eye, and it ramps up to an 8-ish...for an hour...and another hour...and a few MORE hours...

Finally, the next day, after about 24 hours of this, I go in to the student health center again...my regular doc is out, so I see this other guy- turns out he has a lot of experience with headaches and has several CH patients!  He was great- he's up on all the research, really engaged me in discussion, listened to all of the advice I've gotten from you guys, and was very cut-the-BS about it all.  He's also a DO (an MD with extra training in chiro) and he did a "manipulation" on my neck- I swear it helped a little.  I sounded like a bowl of Rice Krispies.  ;D

So I'm like, "What the he!! is this?? It FEELS like CH, but it's gone on so long!"  He said that according to the latest data, and some other patients, it really does seem that women DO present differently than men do: men will be like a switch- it's ON and then after an hour or so it's OFF again; whereas they are finding that women are tending to have a less extreme peak-and-valley experience- it may slowly ramp up, but last a lot longer and be harder to get rid of.   :P  So he says yes, he really believes this is another round of CH bitin' my @ss.  

On a positive note, tho, he gave me a new med to try-Fioricet(sp?) and it REALLY seems to be working!!  He's had good success with it for other patients who didn't respond to other treatments.  So, we'll see how this goes!  Who knows, I may just get my projects done after all and not have to take an "I" in every class! :D

And thanks again for everyone's priceless support!!!! XOXOXO
-Paige

Floricet with Codeine is a barbiturate, analgesic, stimulant, and narcotic combination. Be careful along those lines. It is very rare that a physician with knowledge of Cluster Headaches would prescribe narcotics as a solution to Cluster Headache.

May I ask some questions?  Was there pain free time at intervals, & did the pain ramp up or down, or did it remain constant?

At the end of a high cycle, I get 45 minute hits with a few pain free minutes before the next one.

If there was no pain free time for that many hours, I would get another opinion because there are other conditions that are more dangerous than ch.

There are also other types of headaches in the Trigiminal Autonomous Cephalalgia category.  

Paroxysmal hemicrania occurs frequently, I think up to 40 times a day.

I think the doc may have been thinking of hemicrania continua, which indomethacin also helps.  It ramps up and down continuously, and turning your head may make it feel worse.

You can have more than one type of headache, and they can occur simultaneously.

I am glad the fioricet is helping.  You know - all the warning about narcotics and will be careful.

Charlotte

"whereas they are finding that women are tending to have a less extreme peak-and-valley experience- it may slowly ramp up, but last a lot longer and be harder to get rid of."

I didn't find this to be true.  Women whom I know with ch go from 0 to whatever in just a matter of a few minutes just as men do, and the ch leaves just as quickly as it arrived. Mine always went straight to an 8 or 9.....never had shadows in 28 years.

I always thought a DO didn't have an MD degree, but I could be wrong.

I'm really sorry that you are having such difficult and long bouts with your headaches.   As said before, Fioricet isn't a drug prescribed for ch.

A good neurologist would be in order.

Good luck with school.

8-)

Quote:

Fioricet® (Butalbital, Acetaminophen, and Caffeine Tablets USP) is indicated for the relief of the symptom complex of tension (or muscle contraction) headache. Evidence supporting the efficacy and safety of this combination product in the treatment of multiple recurrent headaches is unavailable. Caution in this regard is required because butalbital is habit-forming and potentially abusable.

I'm sure chiro is good for for tension headaches also.  My tension headaches used to hang around for days.  Really annoying!

Floricet, that's a new one for sure, will certainly be asking my MD next visit.
Looks like you got lucky, both with a drug class that usually does not work on CH, and with a Doc who spends the time and seems to care, many do not. A study on the Robbins site says on average, by 2000 numbers, it takes 4 doctors and 6 years for the average CH patient to get a correct diagnosis.
I think that CH treatments are in two classes, those to handle the headaches, and those to try to stop the episode. For me at least, the treatments for the individual headaches, either seem to work or not work in pretty short order, usually without a lot of rhyme or reason. Still, some doctors will stay on them for weeks if not months, loath to switch. I also got lucky, albeit after 30+ years, but I switched MD's just to try to get a script for O2, and the new doc was fantastic, right up on CH's, took his time and did a real workup, and is now a friend and partner in beating down this thing.
Long term treatments are a bear. You don't know if something actually works, if if the episode was just destined to stop when it did. Still, some people seem to think adjustments work, or at least help, lifestyle changes, dietary supplements or the like, but there sure isn't a lot of discussion on long term of late.
Still, if adjustments seemed to help, by darn, stick with them.
Only thing for sure, what works, works, and what doesn't, might just work on the next one.
Hope they keep working for you,
Chris

Has anyone tried acupuncture?  It worked like magic to break my cycle twice, but this time, no such luck.

 
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 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]

I was given fioricet about 25 years ago. It's the only "narcotic" type med that ever seemed to have a mild effect on my CH. Low scale hits, 4-5's, it seemed to help with. Anythng above that it wouldn't touch.

That being said, I wouldn't touch the stuff now. The potential for problems is just too big. And there are FAR more effective treatments available now. You need to find a neuro who's a little more up to date. You're getting info that was at the fore front....in the 1980's. There is SO much more available now.

Joe

Thank you all for your words of support!  okay:  Charlotte- it did ramp up and down a bit, just not enough to give me any relief...he said he has treated several female CHers who have the same pattern (that it's more of a constant pain but at different levels vs. completely going away for periods of time.)

Donna-yeah, I didn't know what a DO was, either!  He said it's the same thing as an MD, but you stay in and do extra coursework/residency in osteopathic stuff; he recommends a DO vs. a Chiropractor because a DO has a more "whole body" approach.  Also, he gave a nod to the fact that there just isn't any truly definitive research yet on male vs. female CH, but a lot of recent studies point to the possibility of different presentation of symptoms, which also might explain why there are so fewer women diagnosed with it than men...we'll see I guess...


Fly gas- first, I want to know what your name means!  :)  Second, yeah, I have always been a case study of unusual reactions to drugs, so I'm not surprised if something works for me that doesn't work for others.  Caffeine actually makes me drowsy!!  But you are so right- I am VERY lucky to have found two doctors who seem to know their stuff and even have experience treating CH and are both very compassionate, caring people.  They are DEFINITELY getting Christmas presents.   :);D

As for today, I feel sooooo much better, just shadows...and I slept SO GOOD!!  ;D  Don't worry, I have seen friends ruin their lives with drug habits- I have no intention of abusing this stuff.  We have tried everything else in the arsenal before resorting to this.  And I have a 5-yr-old to play with and an art career to work on, so I don't WANT to be loopy and groggy!!  :D

I guess we'll see how the rest of the day goes!!
-Paige

... as a footnote, for those who haven't caught my other posts here and there, we have tried everything that has been suggested on this message board that is available to me (except acupuncture, and of course stuff like surgeries) and if there's new research I've come across that my doctors haven't seen yet, I've printed it out and given it to them.  Trust me, they are very open to all of your ideas, and they did NOT want to resort to a narcotic!  

He had me come back in for a checkup today, and I told him about everyone's concerns; he said to tell you all not to worry, that this is one of the mildest narcotics, and that I'd have to be taking them all day long for a week to start getting addicted to them.  I was even able to do technical computer work under the influence of it.  

But this thing that hit me yesterday was either a K10 or the closest thing to it I've had so far.  I wouldn't want to use this stuff unless it got really bad like that again.  I'd rather tough it out than be "drugged", you know?  but then again, I've been through natural childbirth, kidneystones, and five broken noses (that's a whole 'nuther story!)  ;D