Hello,

I am fairly new to Cluster Headaches and am very glad I found this page.  It's been a crazy road so far, with very little understanding or support. 

My first cycle happened two years ago, but the Doctors didn't know what it was.  They tested for all kinds of things and put me on Prednisone as a precaution for another condition.  The prednisone worked, to a certain extent, and four weeks later the headaches went away.

I just finished my second cycle last month.  It lasted six weeks and was an absolute roller coaster.

First, I was told it was a migraine, by three different doctors and was given Axert.  I kept going back, day after day, and telling them I thought it had to be something else.  Nobody listened.  Eventually, a fourth doctor told me she thought it was Cluster Headaches.  She continued me on Axert, gave me Immitrex and told me to follow-up.

I ended up in ER around the fourth week, and after giving me hoards of medication, that didn't work, through IV the ER doctor ended up giving me morphine.  He lined me up with a neurologist and sent me home.

The neurologist confirmed, again, that it was Cluster Headaches, put me on Verapamil and sent me for an MRI.  The Verapamil started working within about five days and I haven't had a headache since.

However, it's time now that the neurologist wants me to start weaning off the Verapamil and I'm freaking out.

I've started to lower the dose, as she said, and can feel some of the symptoms coming back.  Not to the point of boiling over into a headache, but they are there again.  Tension in my face, pressure behind my eye, tearing, runny nose...

Anyone else have the same problem when they start cutting back after a cycle ends?

Thanks so much,
Anisa

Welcome to the board Anisa. Glad you finally got to a neuro, it's so much tougher for the women cuz as soon as you say "bad headache" the parrots all say "migrain" and ignore all of your symptoms. Is your neuro a headache specialist neuro? It's such a rare field most neuros aren't that up to date on CH treatments. Let us kmnow where you're from, maybe somebody can refer you to a neuro they've used.

As far as weaning off the meds, always a crap shoot! I use lithium, at 1200 mf a day it blocks 60-70% of my attacks. i start weaning off over several days, by the time I hit 600 mg, if I start getting heavy shadows I know the cycle isn't done yet.

As far as the meds you've tried so far, verapamil is  the most popular prevent becasue of a great track record. We call the prednisone a transitional med. Good for short term use while your verapamil kicks in but too hard on the body to take long.

You haven't mentioned oxygen yet.  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

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This link will show you how to get set up with welding oxygen:

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Follow this link  to the medications section of this board and read the post  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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 healthy for you even without CH!

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.

clusterbusters.com


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

Joe

Welcome Anisa. I assure you your story is familiar to us, and actually yours has a decent outcome: a good and rather "quick" diagnosis with the beginning of a decent treatment regime. Read everything here, take notes, and arm yourself with the power of knowledge. You must become your own best advoacate.

As to your question: I would say if you are weaning off verapamil but your symptoms are coming back, then your cycle is not over. Tell your doctor about the return of symptoms and ask to go back up. I have found if we give the beast a toehold then it will take courage and come back even stronger. And I second Joe's encouragment to get O2. Read the link at the left and ask any questions you might have. Good luck and God bless. lance

Unless there are some side effects from the Verap. there is no reason for not continuing to use it.

Our general thinking is to continue it for seveal weeks after your last attack. But people who have short active cycles followed by brief periods without attacks, then starting another cycle--they will stay on 100% of the time. Point being: adjust your use to your body's experience.

Hope you are doing some basic learning about Cluster.
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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]
====

Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
===
Print the PDF file, below, both for your learning and to guide discussing of treatment options with the doc.

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Wow.  Thank all for the responses and information.  Yes, I've been reading a lot about them, but I find it's much better to talk to people who are going through the same thing. 

I live in Vancouver, B.C. and out of the seven doctors, neurologist and chiropractor I saw, none of them had ever treated for cluster headaches.  That, in itself, was very scary.

As for the oxygen, I was told by one doctor and the neurologist that it's next to impossible to get a prescription for?  The neurologist phoned ER and asked if I could just pass triage and get straight to oxygen when I was having an attack, but they told her no.

My cycle ended around the middle of December, so I've been on Verapamil for over a month now.  Is it possible the cycle is still there and just being hidden?  Do you guys notice your symptoms are there all the time or do they completely go away in between?

Thanks again for all the information and warm welcome.  I certainly appreciate it.

A

When I've gone 2 weeks with no attacks I start to wean off. Off cycle I have no symptomology. Like everything else about this condition...it all seems to vary by person!

This is the only doc in the Vancouver BC area that was recommended on our "sufferers" list. Might be worth a call:

British Columbia
Vancouver:
Dr. R. Gordon Robinson

This is a link to all the Canada Docs listed by sufferers.

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Joe

Anisa, there is still so much prejudice out there against O2 in the medical community it is astounding. And disheartening. Getting a Rx for O2 here can be difficult but not impossible. Don't know about BC. You can, however, go the route some have taken and that is to use welder's O2 with a modified delivery system (mask and regulator). Search for welder's O2 here and you'll find instructions on how to go about it. God bless. lance

In my first response, theree is a link to the welders oxygen that Lance describes. Welding 02 is just as pure as medical 02. It literally comes out of the same tanks as what goes to the hospitals. Any impurities in the welding oxygen means welds fail and planes fall outta the sky! ;) Many here have used it succesfully for years. The biggest advantages are it's significantly cheaper, and does not require a prescription.

It takes very little "safety awareness" to use it safely:

Store the tanks so they can't be knocked over potentially damaging the valve on top.

Understand that 02 is an accelerant....meaning anything that is flammable....that's combined with oxygen...will be a sh&% load more flammable and will go up like a roman candle. So just use it in a well ventilated area, and if you smoke, allow 10 minutes of fresh air time after using oxygen, to unsaturate your clothes, before lighting up.

02 has been such a game changer for me.

Joe