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
Introducing myself & a Question. (Read 1703 times)
Kassi
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Introducing myself & a Question.
Oct 4th, 2009 at 1:48am
 
Hi my name is Kassi. I am 18 years old and have just recently been diagnosed with cluster headaches. I've had 'migraines' since I was 14, but the doctors would only give my tylenol and things like that as a medication. When I finally researched migraines, I realized that I didn't suffer from migraines at all, but that I seemed like more of a cluster headache sufferer. I've tried a few medicines since. Zomig, Imitrex Nasal, Propanolol,Caffergot/Ergotamine, and Ibuprofen 800. Right now I take propanolol for long term use, and Imitrex and Ibuprofen as preventative. Right now I'm just episodic.

I have a 2 yr old, and have been married for a year. Sometimes trying to deal with CH gets overwhelming and I just feel so depressed. I'm so happy that I've found somewhere where people understand. I think that my husband sometimes thinks that it's just a headache.

I was wondering if anyone has any experience with a calcium channel blocker compared to propanolol? My doctor has been pushing me to try a CCB, but I'm nervous about side-effects and effectiveness. Any help would be appreciated.


Kassi
Back to top
« Last Edit: Oct 4th, 2009 at 1:53am by Kassi »  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Introducing myself & a Question.
Reply #1 - Oct 4th, 2009 at 7:25am
 
Propanolol is an old migraine med which has no value with CH. Verapamil is the well established preventive for CH with a long record of success and safety.

I'm going to throw several items at you to bring you up to speed on current therapies.
========
 
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]
=========

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
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
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.
===========
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.
Back to top
  

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


CH version 15.0.8 member
since 2005 aka GingerS224


Posts: 1300
Wilkes-Barre, Pa (USA)
Gender: female
Re: Introducing myself & a Question.
Reply #2 - Oct 4th, 2009 at 8:24am
 
Kassi Welcome!

I take verapamil a ccb and the only side affect that bugs me is swollen ankles  Roll Eyes and that's not as bad as a CH hit  Wink

All I can say is try it, if you don't like it or if it doesn't work for you, you can always go back to something else that did work.

Have your husband do some reading here on your condition, maybe then he'll be a bit more supportive and understanding.

In the mean time... I'm Wishing you lots of PF time to play with your little one!
Back to top
  

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
An eye for eye only ends up making the whole world blind.
M.K. Gandhi

If you are going through hell...Just keep going
WWW JustNotRight gngr.stewart GingerS224  
IP Logged
 
Linda_Howell
CH.com Moderator
CH.com Alumnus
*****
Offline


Do not feed the Moderators


Posts: 11927
Santa Maria, Ca.
Gender: female
Re: Introducing myself & a Question.
Reply #3 - Oct 4th, 2009 at 12:25pm
 


Hi Kassi and welcome.

    If your husband refuses to come here and read and YES...some do, at the very least print this out and give it to him to read, and then you keep coming back here for support and information.  You hear me???   LOL


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

Hurt people.....hurt people.   Think about it.
WWW calientev8 N/A N/A  
IP Logged
 
Charlie
CH.com Alumnus
***
Offline


Happy to be here


Posts: 18971
Jamestown, NY
Gender: male
Re: Introducing myself & a Question.
Reply #4 - Oct 4th, 2009 at 3:20pm
 
Welcome aboard Kassi but I'm sorry you are having to deal with this horror. I too took my share of Propanolol but I was never impressed with the stuff. Any perceived result was likely just timing of the ending of cycle. My hits disappeared some years ago so I didn't have experience with the newer treatments....not that I'm complaining...

I had some good luck with this however:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from my neurologist:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie      
Back to top
  

There is nothing more satisfying than being shot at without result---Winston Churchill
135447360 mondocharlie mondocharlie  
IP Logged
 
Lottie
CH.com Veteran
***
Offline




Posts: 112
Gender: female
Re: Introducing myself & a Question.
Reply #5 - Oct 5th, 2009 at 1:40pm
 
Have you tried O2 as an abortive? If not, read the oxygen info marked in yellow on your left, and take the info to your doc!

Lottie
Back to top
  
 
IP Logged
 
Callico
CH.com Hall of Famer
*****
Offline


Author of "Stranded at
Romson's Lodge


Posts: 4916
Aurora IL
Gender: male
Re: Introducing myself & a Question.
Reply #6 - Oct 6th, 2009 at 6:24pm
 
Welcome aboard! 

First of all I would recommend you find a Headache Specialist who is knowledgeable about clusters.  I don't think you hve very good care from the little you have said.

Calcium Channel Blockers work well for some of us, primarily Verapamil.  It was not totally effective for me and I didn't like some of the side effects I got with it, but I react strangely to a lot of meds.  A year or so ago I read up on Kudzu and replaced Verap with it and quite successfully.  In your reading here I would suggest you go to the "old m-board" button on the left and look through it for a very long thread on Kudzu.  It was started by Nani, and is excellent.  Sorry I dont' have the time right now to get you the link.  I'm supposed to be working! Embarrassed

Keep reading.  There is a tremendous amount of info for you to absorb.  Feel free to ask questions.  No honest question is a dumb question, although I have been known to give dumb answers. Cheesy  There are a lot of folks around here who know a lot more than me who can give you smart ones.

One last thing, OXYGEN.  I can't recommend it highly enough.

Jerry
Back to top
  

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
IP Logged
 
Kassi
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Re: Introducing myself & a Question.
Reply #7 - Oct 6th, 2009 at 7:42pm
 
Thank you for the information. I appreciate it. Next time I go to the doctor I'm going to talk to her about oxygen and the calcium channel blocker. Thanks also for the support. Does anyone know of a website where I can find Headache Specialists or Neurologists with experience in CH's?

Also, to clear up the misunderstanding, my husband really does support me, he's been there when I'm up at 3 in the morning crying and pacing, I just think he misunderstands how seriously this situation takes its toll on me. He doesn't know how helpless I feel when I have a cluster while working and I have to come home, or while we're trying to go on a date and one hits me. It's just so depressing at times, and I don't think anyone except for people that experience it can really understand. But, other than that matt is a really good guy.
Back to top
  
 
IP Logged
 
Skyhawk5
CH.com Alumnus
***
Offline


I love YaBB 1G - SP1!


Posts: 1320
Ypsilanti, Mi. USA
Gender: male
Re: Introducing myself & a Question.
Reply #8 - Oct 6th, 2009 at 7:58pm
 
Try this link for Doctors.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
[ftp][/ftp]
Back to top
  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
Skyhawk5655  
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Introducing myself & a Question.
Reply #9 - Oct 7th, 2009 at 8:18am
 
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.  Call 1-800-643-5552; 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.




Back to top
  

Bob Johnson
 
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!