Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Just Diagnosed (Read 1441 times)
CrystalC
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Just Diagnosed
Dec 2nd, 2012 at 9:15pm
 
Hello!!!

I was just diagnosed with Cluster Headaches at a Neurologist yesterday.

I had never heard the term "cluster headache" prior to my diagnosis as I always thought that these headaches I have were somehow related to my migraines.

I started having migraines about a year and a half ago when I was 31 years old - I get them with aura, and have them very well controlled with Propanolol as a preventative and Imitrex for aborting a migraine if I get one.  I don't even get to the point of pain as the triptans work marvelously for me and the beta blocker has the frequency of the migraines WAY down from where it was before I started taking it.

About a year ago I started getting headaches with my menstrual cycle that were much different than my normal migraines.  There was no nausea, no light sensitivity and it was sharp, stabbing, intense pain and pressure that would not respond to imitrex or anything else I tried to take.  It is hands down the worst pain I've ever felt in my life (and I've had babies with no pain medication!) and every time it happens I'm convinced that I'm going to just die.  I just pace my house or sit in a rocking chair pushing my palm into my right eye socket as hard as I can.  They last anywhere from 30 minutes to 1.5 hours normally, though I've had one or two that have lasted 2 hours.  I get them 3-5 days every month from the day before my period starts, and they start between 8-10pm each night.

My GP was baffled, and we tried a few different things, but nothing seemed to work.  No pain medicine even puts a dent in these headaches and Imitrex pills didn't seem to do anything, either.

So i was referred to a neurologist - and he prescribed me Prednisone and Imitrex Injectors (instead of the pills) because he says my digestive system probably comes to a halt when the attack starts, so the pills weren't doing much. 
I'm supposed to take 10mg each morning starting 2 days before my period for 5 days.  He said it's extremely rare for these to follow the menstrual cycle, but there are a few case studies out there for "special" women like me.

I would like to try oxygen since that seems to be very effective for other people.  The neurologist said we would be able to try that in the future if we can find a supplier near where I live (I'm in the sticks) and my insurance will approve it.  He doesn't want to mess with the Propanolol since it works so well for my migraines, but we may switch to Verapamil if the steroids are not effective since that seems to be effective on migraines as well.

I'm so excited to perhaps have some HOPE of control over my head!  I was starting to lose hope that I'd ever have a normal existence again without these terrible headaches.  It has been quite depressing.

As sorry as I am that other people suffer from this, it is nice to see these message boards and know that I'm not the only person that suffers from these beasts.

Look forward to talking with some of you!

-Crystal
Back to top
  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Just Diagnosed
Reply #1 - Dec 2nd, 2012 at 10:08pm
 
It sounds like your neuro has some subtle awareness of the links between migraine and cluster. Good sign!

For Cluster, Imitrex INJECTION is the only way to use this abortive. Pill is just too slow acting.

Re. preventive: Verapamil is the first line for Cluster although dosing is rather high.
====
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.
=======
Just in case he has not seen it, print out the PDF file, below. Copy for you too, to study.
====
Explore:

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  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, at Amazon.com.
=====
Oxygen is widely used and appreciated but doesn't have as high a success rate as Imitrex for Cluster, plus issue of convenience.
==
This abortive has been well received by several of us. Has cost advantage over Imitrex plus the convenience of pill form.
--
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]



Back to top
  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
IP Logged
 
AussieBrian
CH.com Hall of Famer
*****
Offline


CH - It's all in your
head!


Posts: 3851
Cairns, Qld, Australia
Gender: male
Re: Just Diagnosed
Reply #2 - Dec 2nd, 2012 at 10:41pm
 
CrystalC wrote on Dec 2nd, 2012 at 9:15pm:
... and he prescribed me Prednisone and Imitrex Injectors (instead of the pills) because he says my digestive system probably comes to a halt when the attack starts, so the pills weren't doing much. 

What a delightful comment. I wonder that we never considered this before.

G'day, Crystal, and welcome.
Back to top
  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Just Diagnosed
Reply #3 - Dec 3rd, 2012 at 8:11am
 
Welcome, Crystal. You've made a good start on managing the Beast. Push for O2, even welder's oxygen, with the right mask and regulator-see link at the left. You might also try chugging an energy drink (Red Bull, Monster, Rock Star etc) just as a headache is coming on. While this tends to be most effective coupled with O2 as an abort, some have found it useful by itself. And check out the vitamin D3 regimen on various links. Some have found that to be incredibly helpful. Ask any questions. God bless. lance
Back to top
  
 
IP Logged
 
CrystalC
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Re: Just Diagnosed
Reply #4 - Dec 3rd, 2012 at 7:42pm
 
Wow, thank you for all of the information! 

The clusterattack.com/blog link that is posted above tried to install malware though - is there another route to get to that information?

I've never tried energy drinks.  Is there a brand that is best? There are tons of them out there, and I've never actually had one before. 

The prednisone didn't seem to help last night - I'm not sure if it's just too low a dose, or if it is just ineffective.  I upped it to 20mg this morning, so we'll see how it goes tonight.  The Imitrex injections were a godsend though, it has helped more than anything else I've tried thus far!

Thanks again for all of the info!
Back to top
  
 
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Just Diagnosed
Reply #5 - Dec 4th, 2012 at 7:40am
 
Crystal, I'm not sure why the doctor is giving you Prednisone at those levels. We usually are given a taper: it starts out really high, around 60-80mg/day, and gradually decreases or tapers until we are done. It buys us time for longer term preventatives to kick in. Most of us find its effectiveness disappearing somewhere around the 10-20mg/day dose.

As for energy drinks, pretty much any will do if they have a combination of Taurine (1000mg) and caffeine (85mg+). It's mostly a matter of which you think tastes best. Blessings. lance
Back to top
  
 
IP Logged
 
CrystalC
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Re: Just Diagnosed
Reply #6 - Dec 5th, 2012 at 9:20pm
 
Well, the steroids are definitely at too low a dose - I didn't notice any difference at all in the pain at onset or ferocity.  The imitrex injectors though have been wonderful - they don't abort the headache completely, but they take it down to a 5 or 6 rather than a 9 or 10.  I tried downing an energy drink last night before I administered the injection, and it seemed to help a bit as well.  Last night was difficult unfortunately - I will occasionally get more than one attack a night, and last night I had two that woke me up in complete agony, I wish that they'd wake me before they weren't already in full swing.  I felt like I'd been run over a truck today at work and was in a generally bad mood.  Hopefully tonight will be the last night of headaches this month and it won't be as bad as last night.

Slow but steady progress is good, but I am very impatient and motivated to get control over this.  I have an appointment with my GP tomorrow, and hopefully she'll know more about the prednisone doseage.  I'm also going to ask about verapamil and coming off of the propanolol.  I'm willing to have an increase in migraines temporarily to find a good control for both of these types of headaches.  I pray we'll be able to find something!

One thing I am completely frustrated about....what STARTED these headaches?  I was fine before a year ago, hardly ever went to the doctor and was very healthy.  I am really wondering what happened in my body to cause all of these problems?  My mom has had migraines for 30 years, and that's the only thing I can think of, I mean, was this just lying dormant in me for my whole life?  Aggravating.

Hope everyone is doing well!
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Just Diagnosed
Reply #7 - Dec 6th, 2012 at 12:01am
 
CrystalC wrote on Dec 5th, 2012 at 9:20pm:
One thing I am completely frustrated about....what STARTED these headaches?  I was fine before a year ago, hardly ever went to the doctor and was very healthy.  I am really wondering what happened in my body to cause all of these problems?  My mom has had migraines for 30 years, and that's the only thing I can think of, I mean, was this just lying dormant in me for my whole life?  Aggravating.


In reality it almost doesn't matter what caused them to start. The fact is that they did so what you need to concentrate on is to deal with them as best you can and then to live life between CHs.
Back to top
  
 
IP Logged
 
Mike Bernardo
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 231
Chesterfield, NJ
Gender: male
Re: Just Diagnosed
Reply #8 - Dec 7th, 2012 at 2:40pm
 
Welcome to the group. As an alternative to a medical supply store for the O2, try a welding supply store. If you live in the "sticks" there may be one near you where can buy/fill a tank.
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!