Hello Everyone,

This is my first post here.  i'd like to thank thoseresponsible for these boards...they are of great help!

I have been a victim of cluster headaches for more than 22 years.  They usually hit me once a year, and the cycle lasts for 2 months.

The latest cycle started about 2 weeks ago, shadows and getting the general aura that I so well know. dreading the coming months.

I have not had any monsters yet, but I've been close. the episodes seem to be shorter than in previous cycles - which is a good thing but I do sense that they are starting to warm up.  so I went to see a neurologist today and he proposed the following : Convulex 500mg / day for 30 days and Dexamed (cortisone) for a week and tapering down after that.

Has anyone ever taken these before and how successful have they been?

appreciate your feedback.

thanks,

Welcome to the boards, if this is the extent of your doctors treatment plan then you are dealing with a doctor who is woefully inadequate to treat CH. Not really a knock on your doc, CH is a rare disorder, docs get about 4 hours of headache education in doctor school covering ALL headache types, and those that don't specialize in headaches just don't see enough of them to stay on top of current treatments. If at all possible, you need to get referred to a headache specialist neurologist. We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 34years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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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. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. The Convulex you asked about ...if I looked it up correctly!!!!...is also known as Depakote, a little used prevent for CH.  Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief. Has he ever tried you on Verapamil??

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. That's the cortisone he prescribed, as I mentioned, it'll provide 100% relief for me but the CH comes screaming back as soon as I go off it.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

I hate to bury you with a lot of info at first bite.... ;)....but print this out and show it to your doc........:


This is a commonly used protocol:

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

Thank you Guiseppi,

Really appreciate your reply and time.  I had a feeling my Doc had no idea.
He has never had me on Verapamil.

Im not going to take any of the meds he proposed.  Instead Im heading to the pharmacy now to start the anti-inflammatory regimen, which is :

Omega 3 Fish Oil - 1000 to 1200 mg/day
Vitamin D3 *        - 10,000 IU/day
Calcium **           - 500 mg/day
Magnesium           - 400 mg/day
Taken after biggest meal of the day.

Im going to start with this before getting the lab test for 25-Hydroxyvitamin D. I know it’s a shot in the dark but willing to give it a try.

In meantime, as an abortive , im going to continue with red bull (also picked this up from CH.Forum) and has miraculously worked well so far. If it stops working then ill have to make due with strong pain killers. 02 ive read is  great, but I have to go and purchase all the equipment.  Do you suggest any pain killers?

Should I introduce Verapmil while doing the regimen?

Thanks,

Hi and welcome

I'll echo Joe's comments about his observation on the apparent CH knowledge of the neuro you saw. It's really important to work with a headache specialist who has experience of working with CH as this is a pretty specialised area of medicine and far too many doctors, even neurologists, just don't have the skills required.

The vitamin D3 route is a good option, it is what has enabled me to go 2 years since my last CH, with others going over 3 years. It has about an 80% success rate, so hopefully it will work for you too.

In the meantime, Red Bull or any other energy drink with taurine and caffeine (it needs both), will help, just drink it rapidly when you feel a CH starting. Don't stop to savour the exquisite (!) taste.

For info about oxygen, read up - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. It is one amazingly good abortive. I can kill off CHs in under 5 minutes using a flow rate of 25lpm and a non-rebreather mask.

I'd skip using any pain killers. Even the strongest narcotic pain killers don't touch the pain, take too long to start working and have issues with rebound headaches plus addiction. Either use oxygen or look at imitrex injections.

You also asked about using verapamil whilst using D3. Yes, you can do this, just make sure you take any calcium supplements multiple hours before / after verapamil as they can interact. And be careful about doing multiple things at once as you'll have no idea what is actually working or not.

I tried several narcotic pain killers in the early stages before I had a CH diagnosis, Vicodain, Codeine, and Fiorinal. None touched the pain, but Fiorinal actually seemed to work on the mechanism of CH and would shorten an attack and lessen the severity for me. The down side is it's highly addictive. That's the problem with most of the pain killers, they do so much damage to your body, cause rebound attacks, and sadly do very little to manage the pain.

Your call on the verapamil. It takes up to 2 weeks for the verapamil to build up as a prevent in your system. The steroids should give you a break while you're on them. the only problem with starting the verapamil at the same time as the Batch Regimen is you don't know which is providing the benefit.

Joe

thank you guys!

what are the side effects of verapamil?

I will go ahead and start the D3 tomorrow. so just to double check and to make sure am doing everything right , this is what I will take :

Omega 3 Fish Oil - 1000 to 1200 mg/day
Vitamin D3 *        - 10,000 IU/day
Calcium **           - 500 mg/day
Magnesium           - 400 mg/day

Do I need to add anything else?

I've read somewhere on another thread here that someone cut out magnesium from the intake and things improved for him.  should I take it or cut it out?

thank you!

rookie wrote on Jan 30^th, 2014 at 10:17pm:

what are the side effects of verapamil?

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Quote:

Verapamil may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:     constipation     heartburn     dizziness or lightheadedness     headache Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:     swelling of the hands, feet, ankles, or lower legs     difficulty breathing or swallowing     slow heartbeat     fainting     blurred vision     rash     nausea     extreme tiredness     unusual bleeding or bruising     lack of energy     loss of appetite     pain in the upper right part of the stomach     yellowing of the skin or eyes     flu-like symptoms     fever

The constipation is what impacts most people. I'm half convinced that verapamil is made from concrete dust, although after a while with a good, healthy diet, it improves.

Since it is mainly used as a blood pressure medication it is likely to reduce your blood pressure, so all the side effects like dizziness are related to it.

It can impact the PR interval for your heart, which is why people on verapamil should get an ECG done every few months. If it is impacted then stopping verapamil should address it.

I used it extensively and would use it again as required.

Send a PM to Batch with specific questions about the regimen, he's a great guy and will answer you very quickly. The only side effect I had with Verapamil when I used it was impotence.  :-/ I was in my 20's and even at the lower doses Elvis just didn't wanna wake up and play! Like the pain wasn't enough beasty had to take THAT away from me too!!!! One of the reasons I eventually switched to lithium as my prevent. Like all side effects they're not universal, trial end error is the route you have to take!

Joe

hey Guys!

sorry did not check back in for a while. but its been a rollercoaster the past 4 days.

I went on the regimen, but got killed by some massive attacks (was only 2 days into them) so I quickly went to what my docs prescribed. Dexamed (cortisone) 4mg x 3 times daily &
Convulex 500 x 1 daily

It took instant effect. felt much better for the next couple of days – except for the crapy side effects of bloating, weight gain and laziness etc…. but I would take those over the pain any day.

last night, I woke up to a pressure throbbing pain in my head which kept me up for 45m then suddenly disappeared.
and again today at 8pm I got another similar pain but more severe which lasted for 45min.

Im I over medicated? the doc told me to remain on the above dosage for 7 days then we would taper down the dexamid and eventually only be on the convulex.  total time on dexamid to be 14 days max. convulex upto a month.
What are the reasons Im getting these type of headaches so early on the course. Is the convulex taking effect early and not jiving with the high dexamid dosage ?

Its late here, and doc not picking up my calls.  Does anyone have any opinions on what maybe causing this?

Hey Rookie,

Corticosteroids are only a transition preventative for CH, i.e., only taken for 10 days to two weeks...  It's usually effective in preventing CH until the taper ends... Then the beast comes back and jumps ugly on you.

Convulex (valporic acid) is not as effective as verapamil in preventing CH.  See the following chart from the EFNS Standards of Care recommended treatments for cluster headache and other trigemino-autonomic cephalalgias...

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The increase in frequency of your CH after starting the anti-inflammatory regimen was likely due to the calcium supplements.  There shouldn't be any problem restarting this regimen but skip the calcium for a few weeks.

Take care and please keep us posted.

V/R, Batch

Hello Everyone,

Well since my last post. I was rushed to ER on Thursday because of the pain that I’ve never felt before. By far the worst I’ve ever been. Maybe had something to do with the pain killer that I took at the first signs of the attack that just added to the insanity.


I went back to my neurologist who switched me to depakine 2x500mg/day instead of Convulex and asked me to increase cortisone intake from 12mg to 16mg/day.

I also passed by another doctor and got half my head loaded up with botox.  (3 days ago).  Might as well, what else do I have to lose.

I chose to stick with only 12mg of Cortisone and 500mg Depakine/day.  So far so good at least no pain but  I feel the CH is trying to break through and thrash me to no end.  Do you think I should up the dosage as per my doc?  Ive already been on cortisone for 10 days…. 16mg cortisone is not such a high dosage from the research ive done…any advise?

The side effects are pretty terrible.. No sleep, bathroom breaks every 2 hrs. mood swings, feel like I can climb a mountain in the morning and crash hard during evening.  Appetite galore and feel like Im going loopy. Is all that from the cortisone or Depakine?

I have stopped the regiment completely. And im sorry about that guys. I will get back on it and contribute to the study.  But I just want to get over this cycle first.  Again feel bad about not contributing to it.

Sounds like you're having a rough time.

Be careful about trying multiple new things all at once as you'll have no idea what works and what doesn't. Yes, I know how tempting it is to try everything to get something to work though.

Be very careful about using steroids for anything but the short term as they can introduce a lot of other problems. We normally just use prednisione for a 10 day (or so) taper dose to enable a longer term preventive to build up.

Botox has limited results with CH, not much different to a placebo in trials, although it can work well with some people for migraine.

Thanks Mike,

after being ok for 3 nights. got woken up by pain which quickly reached kip 8 behind the left eye and spread from there. lasted for about 1.3 hours.  isn't the cortisone supposed to stop these "break through headaches" . I have not even started tapering yet.

Maybe Im going through an especially harsh cycle. and I should just stop girl thingy footing around and go high start heavy on cortisone and Depakine. then taper the Cortisone only.

there is no point in tapering when you still getting break through CH right?

this Is the 2nd time Ive used Cortisone to try and treat my cycle. I don't remember getting breakthrough headaches the first time. and the process seemed so much easier than this time.... Do CH build up immunity? :)

Hi,

I went to a new neurologist last week and he advised me to stop my depakine. taper my cortisone. and started me on ISPOTIN Verapamil 80mg x 3 times daily. (with all confidence)

the tapering down of the cortisone was horrendous. but I went through it. and have for the past 3 days taken only the verapamil as prescribed ( so now 8 days on verapamil in total)

yesterday and today was hit with headaches. yesterday while driving and today during a long flight.  took imigran for both. not sure if they actually worked or pain stopped alone.

as soon as I landed I called my doc and he told me to go back on the cortisone (12mg/day)!!! with verapamil .

isn't the verapamil supposed to take over now. why do I have to go back on the cortisone. from these message boards, people are raving about the effects of Verapamil.

pls help... should I stick with only verapamil or should I add the cortisone back. maybe my headaches are rebound headaches from stoppage of cortisone coupled with imigran as an abortive.... running out of ideas here… thanks :(

There are a few things potentially happening here.

Verapamil takes about 7-10 days to become effective, so it will only now be working as a preventive. However your cortisone will likely have become ineffective several days ago, leaving you with a gap where you had no effective preventive.

Also 240mg a day is a pretty low dose for verapamil, with many needing 360-480mg a day and some go to around 1000mg a day. So your 240mg a day might not be effective for you.

However don't change doses without talking to your doctor.

The suggestion of going back to the cortisone might help for the short term, but then it will be hard to know when the verapamil is effective since you'll be using two preventives at the same time.

I'd be tempted to just stay on the verapamil and look at about day 10 of being on it if you need a higher dose when discussing it with your doctor.

There may also be other reasons for the low verapamil dose like low blood pressure that limit what you can have.

thanks Mike,

I have no other health issues.  I do not want to go back on the cortisone , and ill talk to my doc to raise the verapamil dosage.

thank you!

so he bumped me upto to 360mg total daily Verapamil + 1500mg/daily depakine and no cortisone.

fingers crossed...

I hope that helps, but give it enough time to become effective (10 days) and then re-evaluate the results.

hello everyone,

well, it seems the Verapamil + Depakine is effective.  Have not had a major attack ; only mild passing discomfort and no shadows at all since I started.  This is the 4th week of this cycle and if I remember correctly they usually last about 4-5 weeks.

But how do I know that I’m actually ending my cycle and not just feeling better due to the meds?  Normally my cycle ends abruptly and suddenly with no warning signs.  Can anyone shed some light with experience on this and how to  wane off verapamil?

much appreciated ...

Given that you're still getting some symptoms, even though they are mild, it sounds like the cycle isn't over just yet. So I'd wait until all symptoms have gone, then you can consider starting to taper off your preventives. If when you do this symptoms return then stop tapering off.

One other option is the beer test. If you think the cycle is over and alcohol triggers a CH then try a beer to see if you get one. Obviously have abortives to hand when you try this.

option 2 sounds so much more appealing :)

thanks Mike

Hi Mike,

did the beer test and it was clear my CH is still around. no major attack but def. discomfort.

will re due in another week.

does  Verapamil extend the length of the cycle ?

Sorry to hear that the beer test didn't produce the result you were hoping for, but fingers crossed it will next time.

As for verapamil extending the length of a cycle, I couldn't easily find any published research on this, however there have been reports here in the forums indicating that it might. However it is hard to draw solid conclusions from single isolated reports as there is natural variation in cycle length.