Hi all -
I had read this board some when I was suffering from my first cluster (after I'd been diagnosed) but never posted.  Thought it was time to say "hi"

I'm 45 years old and had experienced very infrequent (1-2 a year) migraines before all this started.  Boy, I long for the days when I thought a migraine was a lot of pain!  :-)

I had what I thought was a migraine... but it lasted 48 hours which was very unusual.  Next day I had that post-migraine "beat up feeling" but it was the weekend so no worries.  But on the Monday I got scared... sort of had a migraine back but also felt like I couldn't gather my thoughts.... I thought I was having a stroke.

Went to primary care and was told I was still in the middle of a migraine... and was told to try that migraine pain reliever.  Obviously it didn't help.   Within a few days, I started getting these blinding attacks... each lasting for like 90 minutes (3-4 per day) and the rest of the time I had "migraine level" pain.

Two more trips to the Dr got me Predizone and a few other things that did nothing, before I finally got referred to a neurologist.

Five minutes into my visit with him, he introduced me to the term "Cluster Headaches."

My cluster ended up lasting about 13 weeks.  In the beginning it was 3 or 4 a day.  7 am - 8:30 am, 9 am - 10:30 am, and 11am-12:30 pm.  The days when there were four each of them would be a bit shorter... but never went much past 1 pm.   I'd usually pass out when it was done, and then wake up and pound vicodin to get through the rest of the day... and sometimes I could feel "ok" in the early evenings and be with my family.

My wife and son were wonderful with all of this. I missed so much this summer.  I was obviously useless for anything that took place in the morning... but was sometimes, all "vicodiny" able to go out to a little league game in the late afternoon or evening.  But even then, if there was too much commotion.. I'd have to walk away.

Towards the end my doctor had me on verelan and topirimate.... and when my cluster ended I have still remained on the verelan.

My cluster didn't have the sudden "stop" others sometimes have.  For me, it started creeping earlier in the morning... finally to the point where it started at 4:45 am.  And went down to 2-3 a day,  then 1... and then.... none.

It's now been about 8 weeks since my last attack.  And while I'm thankful it's over... for me... it's still not.  I have moments of feeling like "myself" (and more of them each week), but still I'll have days where I'm exhausted and I have migraine-level headaches.   If I stay home and do the vicodin, that will help.   The dr says I'm still recovering from both the cluster AND from the treatments.. and to be patient... but it can be very frustrating.

But still, I feel like each week is better than the next... but I'd sure like to feel like me again... at least until whenever this is going to start again.   

Thanks to everyone here for giving me things to read, and hope, and some laughs, while I have been dealing with all this.

And to those just starting it for the first time...hang in there! Unlike a broken leg, or some surgery, you aren't "healing"... so after two weeks you have no idea if you're close to the end, or the same after four weeks, etc.  But they'll stop when they stop, and you can't really do anything about that... so I just found it best to get through each day and then worry about tomorrow.

Nice to meet you all,
Frank

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Would be useful to explore the buttons, left, starting with the OUCH site.

Some basic learning will help give you confidence as our work out a coherent treatment progam.




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]
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See the PDF file, below. Print out and use as a tool to discuss treatment options with you doc.
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Hope you are seeing a headache specialist. Much improves your odds of good treatment.

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. 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

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Nice to meet you Frank, the site has helped many of us immensely.

We are a def. a rare breed, not necessarily understood by the general medical field. I do feel that through this site and our discussions with Neurologist and General Practitioners we will make a difference in the treatment and understanding of our aliment.

Read all you can here and don't be afraid to ask questions, I've gotten more help from this forum, then any other single source , in the almost 20 years I've dealt with The Beast.

Hope to see more of you around here.

Baer

  Hi Frank and welcome.

 
Quote:

but it lasted 48 hours which was very unusual.

   If you are talking about 48 hrs. straight with no rest in between than we would say that YES..that's very unusual. 


Quote:

pound vicodin to get through the rest of the day

Quote:

If I stay home and do the vicodin, that will help.   The dr says I'm still recovering from both the cluster AND from the treatments

What we have learned here over the years is that narcotic pain-killers like Vicodin will cause rebound headaches from hell..which is no doubt what your Dr. is referring to  when he says,  "AND the treatments"   While you say it helps..you could be causing yourself more pain and more attacks than you need or want.

Hi Linda - thanks for the welcome!

As for rebounds, yes, I dealt with those towards the end, but my Dr was very helpful in teaching me about them.  I'd take 1/2 doses, try to go every other day, etc... And it helped very much.  Now I'm down to just a few times per month...no more than one time per week. 

Hey Frank, welcome from another MA resident and CH warrior! I'm glad your cycle seems to be coming to an end, for now...I'm sure your aware this could change at a moment's notice. And I do get that vicodin can help following the kind of hits you were getting. I experienced something similar over the years with regular hits lasting a full 45 minutes coming at the regularly scheduled times, and once in awhile I wanted pain relievers just to deal in between hits. Those were pretty much the pre Oxygen days. Please read the posts concerning O2. It is the most effective abortive we have found. But it does require effective technique and equipment. Being in between cycles is a great time to prepare in case the beast comes a knockin' again. Good luck and God bless. lance

Welcome to the board Frank.  I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. For a small percentage of CH'ers. a short steroid burst will actually abort a whole cycle.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Read this post in the meds section, "123 pain free days and i think I know why" it’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time,

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Read everything you can on this board,  knowledge is your best ally. We’ll help you all we can.

Joe

Thanks all!

As for Oxygen... yeah, that has been very helpful to me.  It didn't work very well at all at first, but I think as I got better at using it, I found it helpful.

I found that it had little effect at all on the first few attacks I had each day, but in my last month I'd say 1/3 of the time it could stop the final attack of the day.

Also, at night when I'd often take the Vicodin, I'd first try the O2.  That was helpful.

When the attacks finally stopped, we got rid of the O2 tank.  But my wife and I have been wondering if it wouldn't be bad to still have it around.

As for Imitrex?  Not for me.  Tried it a few times... and hated it.  Felt like I was going to have a heart attack and found it scary.  And that was a pretty low dose.

My Neurologist said that is a reaction some have, and it's not actually having a heart attack, but its tightness in the chest? 

Either way, I kind of have this bunker mentality.  If something has a chance of stopping the whole cycle... well then I'm willing to try it.  But if it is a drug which, at best, will avoid ONE attack during a day?  I just don't see it as being worth it.  Not for me anyway.  The fewer poisons I put in my body like that, I think the better.

I know of people for whom it's a wonder drug, and that's great... but I guess I'm not one of them.

One question I do have for all of you - Like I said, we're almost 7 weeks since the last attack.  But still I feel tired, I do get actually "headaches" and I've been laid low by a few of those.  Dr said I'll keep getting better each week, and I feel that is true.. but this feels like a long time. 

Anyone else deal with this kind of thing?

I was out of work for three months..and work was so great,  so I feel guilty as hell that I'm not 100 percent yet.  Not to mention the guilt I feel with my family about not being 100 percent.

Sometimes I think it's a bit of being paranoid and extra cautious... but I really don't know.  Like this morning... I woke with a headache and am powering through my day... but it wears on me.

Just curious how it goes for other people when the attacks start.

Thanks,
Frank

Either way, I kind of have this bunker mentality.  If something has a chance of stopping the whole cycle... well then I'm willing to try it. 

Then for sure look at the clusterbusters site.  ;)

Joe

Hi Frank M & Welcome to Clusterville

  I'm chronic since 1/01 . . . wife found this site for me 2/02, after 13 months of tests, non-working meds, mis-diagnosis.  This place and these people gave me the info to take to my doc and finally have some control over this beast of ours.

  That first year of the beast I was always in fear of the next one (when will it come?, how long will it last?, how bad will it be?).  Was having 6-8 attacks daily, sometimes 3-5 at night.  Afraid to take my grandson to the woods or fishing by ourselves as I didn't want him to be the only witness to my stroke/death. . . . could not conceive of anything that could hurt that bad and that often and NOT kill you.

  You said you had 02.  What flow-rate do you use?  Non-rebreather mask (the one with the bag)?  If you haven't already acquired, get yourself an O2ptimask (links on the site - $27.50) . . . a huge improvement over the 1 litre mask your 02 supplier will have available. 

  I have some artery blockage and high cholesterol, so Imitrex is out for me . . . VERY dangerous and do consider those chest pains a warning.  02 is my only abortive (combined with energy drinks & icepack)

  You also mentioned you're taking Veralan.  Veralan is a capsule form of Verapamil . . . one of the most often used preventatives for CH.  It's a taper drug that's gradually increased til you hit an effective dose.  I had my first PF day (in over a year) when I got to 240 mg (considered minimum effective dose) . . . got as high as 480mg, then back to 360 mg maintenance dose which reduced the frequency/intensity of attacks to a level I could easily kill with the 02.  Many take MUCH higher doses and often in combination with Lithium or other meds.  Verapamil is a BP med and your doc should be monitoring your blood pressure . . . might possibly have something to do with your tiredness.  I stopped the Verap in 04' . . . at which time water therapy (see "water X 3" . . link on left) was working for me. 

  Currently my prevents are water therapy (it IS NOT easy to do) and the D3 regimen (see Batch's "123 Days PF . . . " link on the Treatments,Medications,Therapies board). 

  Read, read, read . . . ask any questions you may have.  You've found the motherlode of CH info/caring/sharing.

   Be Safe,   PFDANs

      Richard

I also would be more inclined to look at any drugs you may still be on... and not the CH, for those "lingering" effects.