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
Recently diagnosed with CH (Read 1552 times)
Willow1976
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Recently diagnosed with CH
Jun 14th, 2011 at 11:10pm
 
I have recently been diagnosed with cluster headaches. They started abut 4-5 years ago with emense pain behind my right eye. I went to the eye dr and they said I needed new glasses. It worked, they went away only to come back a year later. Went back to eye dr, same thing. This time however, the eye doc said it was not my glasses and to go to my doc

On May 21st I ended up in the ER due to the severity of the headaches and i was diagnosed with cluster headaches (I had one in while in the hospital) and was put on Verapamil and naproxin. They headaches have very slightly diminished in frequency but not severity. I read on the internet that taking B12 and/or Kudzu extract could also help.
Has anyone ever tried these? Do they work?
What about caffeine? Does that affect the headaches either way?
I am new to CH and am trying to learn all i can to prevent them or make them not hurt so bad. I literlly cry when I get them.
Back to top
  
 
IP Logged
 
Kevin_M
CH.com Sponsor
***
Offline


withered branches grow
green again.


Posts: 8754
Michigan, USA
Gender: male
Re: Recently diagnosed with CH
Reply #1 - Jun 15th, 2011 at 12:44am
 
Quote:
On May 21st I ended up in the ER due to the severity of the headaches and i was diagnosed with cluster headaches (I had one in while in the hospital) and was put on Verapamil and naproxin. They headaches have very slightly diminished in frequency but not severity.


The verapamil is a preventative, which can decrease the frequency of cluster attacks, but since they've only been slightly less frequent, it may be the verapamil dosage is not enough to be effective.  How much are you taking a day?  This dosage can be adjusted for better prevention if it works for you.  Typical prevention may be reached in the range of 360mg to 480mg a day.

Abortive medications are used to relieve the headache in a short time.  The naproxin is not usually sufficient to do this.  There are many here that find oxygen a really good abortive.  Imitrex or Zomig are effective abortives that can be used at times, but due to the quantity usually prescribed, only sparingly.

These should be discussed with your doctor, the results of doing so will help determine to you if he is the one who should be treating you for clusters or perhaps a headache specialist better acquainted with clusters.


Quote:
What about caffeine? Does that affect the headaches either way?


Caffeine can help reduce pain as a vasoconstrictor.
Back to top
« Last Edit: Jun 15th, 2011 at 1:00am by Kevin_M »  
 
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Recently diagnosed with CH
Reply #2 - Jun 15th, 2011 at 8:07am
 
Many of us have found if we add an energy drink (drunk quickly at onset of attack) and couple it with the O2 (read link at left) we can significantly reduce the intensity and duration of the hit and achieve an abort rapidly. Check out the O2 link, get you some, and chug Red Bull or Monster or some other taurine/caffeine combo drink. You'll be amazed at how much it helps. Add to that the info Kevin gave you on preventatives. Blessings. lance
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: Recently diagnosed with CH
Reply #3 - Jun 15th, 2011 at 8:59am
 
It's not wise, sometimes not safe, to start trying a variety of treatments when you have not yet seen a competent doctor. First, good doc; second, a good diagnosis; third, a good treatment plan which is systematic, grounded in good medical knowledge.

Headache is a far more complex area of medicine than is generally recognized. Your ER experience reveals the limited knowledge of many docs and so, if at all possible, we suggest you find a headache specialist.
(If that's not possible, then you carefully ask any prospective doc about their training/experience in treating headache.)
----
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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.
=====
While you are seeking a good doc, start learning about Cluster. Knowledge helps you treat yourself and also reduces your anxiety/fear.

Explore the buttons, left, starting with OUCH. See these sites:

A couple of 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
and
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
===
When you find a good doc, the treatments outlined in the PDF file, below, should be the kinds of of words you should be hearing from him.
===
Avoid OTC pain meds. They don't work for Cluster and they can easily make the situation worse.
Back to top
  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (144 KB | 27 )

Bob Johnson
 
IP Logged
 
Willow1976
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: Recently diagnosed with CH
Reply #4 - Jun 15th, 2011 at 11:42am
 
To Kevin: I am taking 240 mg of verapamil (that's what the ER doc prescribed) but my doc thought that that was too high, but he did keep me on that dose. My doc wants me to come back at the end of this month to re-evaluate my headaches and I am going to ask him about taking vitamins to help ease or lessen the severity of these nasty headaches. The pain is unbarable and i ususally go to bed with a heating pad tossing and turning, rock back and forth, or pace (obviously none of these help) but it keeps me from wanting to bang my head against a wall.

Would coffee or pop be as effective as redbull or monster (i really don't like either of those)

The oxygen therapy sounds like a great idea except I don't have health insurance and only work part time so i am on a very limited income.

Thank you so much for the suggestions, I am really glad that i found this site.
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: Recently diagnosed with CH
Reply #5 - Jun 15th, 2011 at 12:39pm
 
Sorry, vitamins have no benefit for Clusters.

Please print the following and give to our doc. The Verap. dose is rather low.
--
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.
=====
If your doctor is quite sure you have Clusters, then ask him to consider him trying this med to abort attacks. It has proven to be very effective for a number of us. It main adavantage for you is cost: About $3 per dose and one pill per attack is sufficient.

Print this out:

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
  

Bob Johnson
 
IP Logged
 
Kevin_M
CH.com Sponsor
***
Offline


withered branches grow
green again.


Posts: 8754
Michigan, USA
Gender: male
Re: Recently diagnosed with CH
Reply #6 - Jun 16th, 2011 at 7:34am
 
Quote:
I am taking 240 mg of verapamil


I agree with Bob, it's low to be effective for clusters.  It's a good safe dosage to start with initially, but needs to be adjusted thereafter.  Let your doctor know this:

Quote:
The pain is unbarable and i ususally go to bed with a heating pad tossing and turning, rock back and forth, or pace (obviously none of these help) but it keeps me from wanting to bang my head against a wall.


Ask him if the verapamil can be bumped to 360mg/day and if there is improvement, maybe 480/day.


Quote:
My doc wants me to come back at the end of this month to re-evaluate my headaches


A month in cluster pain is too long, call him and relate what you said above about the pain.  Ask him to consider upping the verapamil since you've gotten a little less frequency at 240mg.  Bob's article about verapamil is a good guideline for its use with clusters and would be useful for your doctor to read.  And he should prescribe an abortive, however I see without insurance, these can be expensive.

One thing to look into is welder's oxygen tanks.  With an initial outlay, this can be economical.  I'm not familiar with the specifics about it, but many here are, just ask.



Quote:
redbull or monster


These have taurine, which doesn't mix very well with verapamil.
Back to top
« Last Edit: Jun 16th, 2011 at 7:38am by Kevin_M »  
 
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Recently diagnosed with CH
Reply #7 - Jun 17th, 2011 at 8:37am
 
Kevin wrote:
Quote:
These have taurine, which doesn't mix very well with verapamil.


It's good to be cautious, and taurine can have a bad interaction with verapamil. But it's again something to ask your doc because all of us are different.  I take 640mg/day verapamil, and will drink down a Monster when the first round of the day doesn't yield to O2, but I limit my intake (per docs suggestion) to no more than 1 drink/day, and not even that if I can handle it with O2 alone. Blessings. lance
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!