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New here...from British Columbia, Canada (Read 1084 times)
newdock (Donna)
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One day at a time.


Posts: 11
Kimberley, BC
Gender: female
New here...from British Columbia, Canada
Feb 19th, 2012 at 10:50am
 
Hello all, I am a 42 y/o mother of 4 beautiful children in south eastern BC.

I am new here, recently diagnosed after years of struggles with head / eye pain.

About 2 years ago, it all began with eye problems, which led me to my local optometrist (I was 40 and I thought maybe it was eye strain).  I eventually ended up at a Opthamologist who actually did surgery on my eye.  Still no relief. 

After 2 sinus x-rays, 3 rounds of increasingly strong antibiotics, hundreds of netti pot rinses, a sinus CT scan and a trip to an Ear, Nose and Throat specialist, they ruled out a sinus problem.

The GP guessed trigeminal neuralgia (which looking back didn't really fit the criteria as my pain bouts were too long to be considered for that).  He put me on gabapentin and things seemed to improve.  (coincidence?  I think so).

This past fall, I moved across the province with my family.  It has been a good move, but as with all moves, it has been stressful.  And then there is my 19 year old daughter, who no longer lives with us, but surrounds herself with enough drama to drive any mother crazy.

The stress has triggered another bout.  I have seen 4 doctors in my new town (my new GP had surgery so I was shuffled around a bit).  3 of the 4 have never seen cluster headaches.  The 4th was an ER doc who was old and crusty and lacked any semblance of bedside manner, but took one look at me upon my arrival to the ER and nailed the diagnosis.  He printed out a 4 page document on cluster headaches, which I highlighted every second word as the whole article was apparently written about me.

So I was diagnosed.  And I've done as much research as I can.  My GP gave me a guest pass to a doctor's only website so we could learn together.

So far.....

oxygen - didn't seem to work well for me and I found it irritating because of all the leaking oxygen blowing on my eye and forehead.  Now that I've done some research, I know that the crappy mask I was given as a freebie is likely the issue.  I will be trying it again once I get a better mask.

Imitrex - I am not yet trained to use the injectables, but I have the inhalers.  They work, but if I use a high enough dose to abort, I am stuck having to choose headaches as I have on average 6 a day.

Zomig - I have tried the quick dissolves and they work pretty good, albeit, it is a longer wait for relief.  This was done as an emergency alternative to Imitrex as my town is small and the pharmacy had to order them in.

Verapamil - I started on 360 mg and an up to 480 mg now.  It doesn't seem to affect my already low blood pressure (other than the first few days while my body adjusted).  I had an ECG, which was perfect.

Prednisone - I LOVE PREDNISONE.  I got relief within 18 hours of the first dose.  Just finished a taper, and by the time I got down to 20 mg, welcome back Clusters.  Doctor wants to try another round after my body rests a few days.

Melatonin - 10 mg each night - not sure if it's helping, but it ain't hurting either....

Acupuncture - pretty sure it didn't help

Massage - it has helped with all the muscle tension I get from freaking out during the attacks.  It is nice to get "positive" physical feelings and has helped with my mood.

Vit B complex
Magnesium

I have just read about the fish oil / Vit D combo and will give that a try.

I prefer heat on the outside (close to scalding heat) and cold water in my mouth.  I hold the cold water in my mouth until it warms up and then take another mouthful.  The heat I hold on my forehead above the affected eye.  Once the headache starts to subside, I will lay down with it on the back of my neck (if I can stand to lay down).

Recent Tests -
ECG (for increasing the verapamil)
ESR
complete blood work
waiting for a brain CT

My dr. is referring me to a neurologist, but here in Canada, the wait times for specialists can be long.  I haven't heard yet when I will be able to go.  A regular GP cannot order MRI's....they have to come from a specialist.  And I cannot see a specialist without my GP's referral.

And yes, I have hazel eyes and typical round lion face shape and large neck size. 





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Donna

"Imagine that you woke up today and only had what you were thankful for yesterday."
 
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Bob Johnson
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Kennett Square, PA (USA)
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Re: New here...from British Columbia, Canada
Reply #1 - Feb 19th, 2012 at 11:47am
 
Since your doc is open to learning (you are blessed!) I'm going to throw a bundle of technical stuff for you to share with him.
======
Print the PDF file, below.
======



Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (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]
====
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.
=======
If you really love him, give him title #1; #2 is for you.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")



HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
====
This is a widely used protocol for use of Verapamil.

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

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Bob Johnson
 
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
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Re: New here...from British Columbia, Canada
Reply #2 - Feb 19th, 2012 at 1:31pm
 
Hi and welcome. It sounds like you finally got to see the right doctor eventually with the right mix of skill, knowledge and experience to identify CH.

Oxygen can be extremely effective at killing off CHs. I can kill mine off in about 5 minutes with a non-rebreather mask and a flow rate of 25lpm.

However you need to use it right for it to be effective as using nose canulas or a rebreather mask make it barely effective at best. There is a load of info on using oxygen using the link on the left.

For verapamil, most people with CH respond at between 360 and 480mg, however some need to go a lot higher, some as high as 1000mg, which is a lot, lot higher than the standard use of verapamil for low blood pressure.

Prednisone is great but it can be pretty severe on your body, so don't use it too long or too often. It is also great for putting on weight as it makes even cardboard taste amazing

Do try the vitamin D combo as a lot of people have been having great success with it.

Keep reading and asking questions!
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newdock (Donna)
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One day at a time.


Posts: 11
Kimberley, BC
Gender: female
Re: New here...from British Columbia, Canada
Reply #3 - Feb 19th, 2012 at 10:41pm
 
Thanks for the info.  I will read up on the articles and let you know if I have more questions.
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Donna

"Imagine that you woke up today and only had what you were thankful for yesterday."
 
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