Yes rip your story is not uncommon here.good supporters are rare and even the best ones have a breaking point. Be your own best advocate and read up on batch's post- 123 days pain free and I think I know why. You could be one of the 60% that goes pain-free! Then the headaches will be past tense. Best of luck to you

Sorry to read you suffer from CH's.  How old are you?  I began suffering CH's at age 11, so I do understand what it is like to reside in the home of parents while suffering from 2am attacks.

You need to educate yourself as best you can, so that you can be confident speaking to a doctor, and your mother.

Have you been officially diagnosed w/ CH's?  By whom?  Where do you live?  Have you recently been under the care of a doctor?  Are you on any medication for CH treatment?  If so, what are you taking?

Please share with us about yourself (age, city, how long you have suffered from CH's, treatments received, etc) and we can help point you in the right direction for better help. 

Please remember and o not ever forget...You are not alone! ;) 

We are here to help you and comfort you and truly understand your pain and understand your depression and your suffering.

-Gregg in Las Vegas

Yeah, no one here will ever tell you to take an aspirin and get less stress in your life.  :'( We understand. You always have this board to vent to, and more importantly, the collective knowledge on this board to help you find a treatment that puts you back in charge of the beast. Following up on the Vegas post...tell us a little about your treatments...what has and hasn't worked, etc.

Joe

I live in NY and I've been getting CH's since i was 15 and was diagnosed a year later. I am now 22. I've been taking 240 mg verapamil for prevention and zomig nasal sprays/prednisone when i actually got CH's for 3 years now, 2 of which i was pain free, until this month.

Since this cluster period, my dr. told me to stop taking the verapamil which I don't understand why. I started a week of medrol dosepak, which prevented the headaches for a few days, then the headaches came back so I've been on a double dosage for the last 2 weeks. It hasn't worked.

He also suggest i try depakote, which I really am not so sure if i feel comfortable trying this drug. I've heard bad things about the side affects and I am very skeptical. I've also started with O2 therapy which for the most part has helped enormously! I also like the o2 because its not a harmful chemical.

at times, the zomig 5 mg nasal sprays appear to work well and quickly, other times, if i take it too late, it makes the attack much more intense. I have been taking them every night this week, which i know is not good for my body. after a really long, bad CH the other night, I decided to start taking verapamil again on my own, although I didn't ask my doctor. I went a whole night without an attack last night. I know I shouldn't do that without asking my doctor, but I am so sick of playing phone tag with the doctors office while I am at my job and it's taking up so much of my time, I have taken matters into my own hands. I'm just fed up. 

Its crazy, I didn't even think about CH's while I was in a remission period, but now its the only thing on my mind. I'm so glad that I can talk freely and as much as I want here. I appreciate it more than anything :( :(

Well definitely consider the D-3 route then, it's had me pain free 4 years after over 30 years of episodic CH, follow this link:

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. Best of all, it’s healthy for you even without CH!

Hang in there, we've all been where you are, it sucks, but there's light at the end of the tunnel!

Joe

It's very common that one doesn't think about CH's when in remission and when a cycle begins, it's all they perseverate on.  Again, you are not alone!

At 22, you are certainly not a minor and able to make adult decisions w/o your parents input, particularly if you are not receiving empathy and support.  So 22 is great news opposed to 15, when you began this living nightmare.

Depakote and Verapamil are both very common preventative meds prescribed by doctors.  There are yellow tabs on the left side of your screen which would be my recommended beginner reading.  i.e. Medical info, traits, o2 therapy, quiz, survey, etc.

After you do some reading, you will soon learn that 240 mg Verap is extremely low for CH treatment.  Many others have shared your opinion of Depakote.

You need to understand your cycle...document your attack times, how intense the pain was, what you were doing prior to attack, how long each attack lasted, if you aborted the attack w/ something-what worked/what didn't, your daily diet, etc., etc.

Do look into something called the 123 thread which is an anti inflammatory vitamin regimen.  It's all natural, very inexpensive, just taking daily vitamins, no ill side effects, no prescription required, very helpful for many who follow protocol, do yourself a favor and at least read about it and try it!

Great to read you are using o2 therapy.  See the yellow tab on the left side of the screen titled "Oxygen Info" for do's and don'ts, success stories, etc.  Also you might consider a NON-rebreather mask kit from the CH.com Store also a yellow tab on the left side your screen.

Ever try a Red Bull, Rockstar or your favorite energy drink at onset of an attack?  It's all about the Caffeine/1000 mg Taurine combo w/ carbonation...check it out...slam one, chug it fast and see if it works for you just as you are beginning an attack. Many of us report excellent results w/ a fast abort just from chugging this carbonated energy beverage as fast as you can.

Imitrex nasal sprays are known to be more effective than Zomig nasal sprays and Imitrex injections are superior to Imitrex nasal sprays.  Imitrex and Zomig pills are worthless, as they take too long to abort a CH attack.  But your mom might find the pills very helpful w/ her migraines. ;)  Do be aware of possible "rebound attacks" from Imitrex and similar tryptamine based drugs.

As helpful as it is, Prednisone is also something to be leary of, as it may stop a cycle in its tracks for several days.  However the attacks usually come back w/ a vengeance once the mg dosage is tapered low.  Also the long term side effects are downright cruel to the hips, knees, etc.

Melatonin, natural sleep aid, has proven helpful to many and can be purchased cheap at a vitamin shop.

Try to eat clean, stay away from your known triggers and get regular cardio exercise.  Although you do need to read and learn as much as your doctor, seriously, you should also try to live between the attacks.  In other words...make most use of every moment you are not in pain. ;)

What city are you in?

Gregg in Las Vegas

I live in Albany, New York. I definitely will try the red bull and request a higher dosage of verapamil. I like verapamil because I never noticed any negative side affects at any point in the past few years of taking it. It makes absolutely no sense to me, (although no, I am not a doctor...) as to why my doctor would take me off verapamil because it could lower my blood pressure too much, but put me on depakote which sounds like a somewhat dangerous drug. It seems as though my doctor is going through a list of medications and picking them out one by one. I am not a lab rat.

Is it dangerous to take verapamil and the vitamins at the same time? I have heard they can negate each other?
I also have found that drinking a lot of coffee helps get rid of shadow pains!

Its truly a blessing that you are all so caring and thorough with your responses. To be honest, I was afraid of sounding whiny or pathetic for posting my experiences. It even seems like my neurologist is fed up with me. But it makes sense.  The pain is collective and universal to all of us here. To help someone is to help yourself. Thank you so, so much. I am lucky to have found this website.

I am going off bad memory ;), so do your own reading, but from what I recall it is not necessarily "dangerous" to take Verapamil and the vitamins (Calcium Citrate) together. 

However, the Calcium may lessen the Verapamil effectiveness. It is a good idea to separate these by 8 to 12 hours due to the Verap's serum half life. 

So take all of the vitamins w/ your biggest meal of the day, probably dinner....and take your Verapamil in the morning.  This would separate them by at least 12 hours poffering maximum effectiveness of both.

But certainly ask your doctor permission to take the Verapamil and get his/her opinion of the interaction of the Calcium as I wrote above.

You are absolutely correct that you are lucky to have found this website.  We all are!  Many of us here on CH.com are two and some of us are 3 times older than you and when we were 22 did not have the Internet, et alone a worthy CH resource.  Take advantage of this fantastic resource and don't for a second be concerned w/ sounding "whiny or pathetic" as you absolutely should vent as needed and ask questions and share your experiences for all of us to help each other learn and support one another.

FYI...Dr. Bruno Tolge at the Schenectady Neurological Center is suppose to be fantastic w/ CH patients.  Somewhat close to Albany, might check him out!

Oh and I almost forget to share from when I was 22 yrs old...."Parents just don't understand"
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-Gregg in Las Vegas

I'm not sure if it's chance or this is even possible but since I started taking the verapamil two days ago, I haven't had and CH. Could the verapamil possible have worked? Or is the cluster over? I'm confused, skeptical and relieved all at once.

Verapamil typically takes 7-10 days to become effective, which is why it is normally given with a prednisione taper dose which acts as a short term preventive whilst the verapamil builds up.

So it is possible that your cycle is winding down, but be prepared if it is just a short term pause. If it is over, get out and enjoy life.

I've been corresponding with my doctor so I guess I'll be taking verapamil for the time being and if it doesn't work I was going to try topomax. Does anyone have any experience with this drug?

I haven't used it, many on the board have with varying degrees of success. It's most talked about side effect is the tendency to make you loopy and forgetful, leading to its nick name of "Dopey Max." That being said, some people have success with NO side effects so it's worth a shot, discuss this with your doctor:

A widely used protocol. Your doc will recognize the source and author:

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



Joe

I took Topamax for about 13 years and it was my miracle drug, but it does have a lot of side effects..

My neuro switched me to Zonagran a couple of years ago. He says it's about the same as Topamax without the side effects..

BUT I take the whole dose at night so if there are side effects they appear when I'm sleeping (I did this with the Topamax also and didn't experience the side effects that others have).

BUT I got on the Vitamin D regimen in Oct of last year and have not had a CH since Oct 21st of 2013 and after being chronic since 97 - that's a BIGGIE..

I still have migraines (taking botox treatments for them and am doing better - I'm also chronic with them), but NO CH.

Why not give the D3 a try. All you've got to loose is your headaches..  :-*

Verap was my god....then now and then...CH kicked my ass...the doc , at my request, kept upping it...granted....weeks, months of CH were replaced by a few days...ONE CH IS UNACCEPTABLE in my head....shrooms from clusterbusters answered the call...stopped them for years.