Hi, my name is Jee and i've been suffering from CH for 12 yrs going on 13. I've tried pretty much everything there is out there and found that Oxygen 12/min will make the CH go away after the 15min but most times it will come back faster than it would without O2. I also use Verapamil 80mg 3/day but only for 2 days. I also have Zomig nasal spray, very effective but can only use twice in 24hrs and not more than 12 times a month.

My CH are seasonal, usually fall and spring but over the yrs i've had them in all seasons and all times of the day, usually 1-2 a day for 2 months out of the year.

Doing research i found a "new" procedure" in which they tie the internal maxillary artery. You can find info by typing "New treatment breakthrough for CH". It's an article by Digitaljournal.

I will be looking into this because i can no longer live with these.

Glad to have found a forum for us. It gets frustrating how the CH are so unknown.

Edit: I've started to create a log of the attacks. I write the time, pain */10 and drugs used. Hopefully my doctor will know what to do with it.

Jee wrote on Apr 25^th, 2014 at 1:55pm:

I also use Verapamil 80mg 3/day but only for 2 days.

What does this mean?  What flow O2 do you use?  Do you have a non rebreather mask? Ever try "busting" or D3?

Myself i would be absolutely positive I had exhausted all possible options before considering anything surgical but that may just be me.

I've only been on Verap for 2 days and yes non rebreather mask at 12 LPM. Never heard of busting nor D3, please elaborate. And I would like to have something to make them go away forever and it seems the only options are surgical. :( But that's why i'm here, see other testimony and maybe new ideas. Thx for the reply.

On a side note, i am french Canadian so pardon my english. :)

OK so a few things, first of all welcome to the site!

Verapamil takes about a week or so to get into your system, so give it a chance.

The thing about surgery is, it's not really permanent either.  There have been numerous accounts of CH returning after surgical intervention.

Your o2 flow rate is too low, it needs to be minimally 15lpm, 25 is better.

Check out this website START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE everything you need to know about "busting" is there.

D3 is a vitamin regimen that a lot of people have gotten good results from.  You can read all about it here START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The bad news is, currently there's no cure for cluster headaches, with drugs or surgery.  Dr's can buy us time but the headaches always return.

The good news is, they can be managed quite successfully and boat loads of pain free time can be achieved.

Your anxiety to get the pain undercontrol is understandable BUT you are moving too fast withou a good leader.

Are you seeing a doctor who has experience treating Cluster? (Your Verap. dosing suggests not.) If our doctor doesn't have much experience with headache, try and find a headache specialist, if possilbe, or someone who can assure you that they have broad experience.

Second, print the PDF file, below. It gives you the most commonly used meds for Cluster along with dosing and ratings of effectiveness. Any doc you see should be working from this list.

In particular, see following on use of Verapamil. You'll see how low, therefore ineffective, is the present dose.
===
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.
===================
The most commonly used approach to treating Cluster is:
1. Prednisone, from 60-80 mg/day; reducing the dose 10mg every other day down to zero. This will go into effect in hours and will kill most attacks.

2. AT THE SAME TIME, start a long term preventive medicine, such as Verapamil. It will block or reduce most attacks. It takes seveal days to become effective and so the Prednisone give you immediate protection. Verapamil can be used for long periods withou problems--unless you have any heart problems now.

3. Use the abortive med you have now to stop any attacks which may slip by the Verapamil.

But again, don't rush! Making mistakes now will cause you more pain than taking the time to learn effective ways to treat yourself. Must have a good doctor!
=====
After you get a good doc, start exploring these sites.


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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
------

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
-------
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  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.

---

Hi and welcome

The article you mentioned can be found at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, with the research paper referenced at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Searching using Google Schoolar this is the only paper published on this subject. The research was done by Dr Shevel and it has been discussed several times on the forums, with some quite strong opinions expressed by people.

The paper does not describe the function (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) of the artery that is being cauterized and what the effect of this cauterization is on the facial areas that the artery supplies blood to.

Given the very limited research done with no follow ups as yet, with the paper reporting on only 5 patients, I would investigate further before considering this as an option.

As others have mentioned your oxygen flow rate is relatively low which can make a significant impact on the effectiveness of oxygen. Using 25lpm I can abort my CHs in under 5 minutes. You can read up a lot about using oxygen at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

The verapamil dose is relatively low at 240mg as most people need 360-480mg a day for it to be effective although some go to around 1000mg a day. It also takes about 7-10 days before it reaches an effective level in your body, so after 2 days you are not yet able to determine if it is working or not.

What is common is to use a prednisione taper dose for this time period as a short term preventive whilst the verapamil builds up.

I'd also strongly recommend the vitamin D3 approach that is getting positive results for over 80% of people using it. I've gone over 2 years CH pain free using it and others have gone over 3 years.

I would make sure you've explored all the conventional approaches first before jumping to surgical options which have often had a poor track record.

For your headache diary I'd suggest logging also the duration, description of pain, location and possible triggers in addition to the time, pain and drugs used.

Thank you all for the quick replies. I've will write all of your suggestions down.

Going to answer you guys questions a bit.

To Jason, I spoke to my doctor about 25 lpm and he said the only place i can get a 25 lpm dosage would be at the hospital. I'll ask the oxygen supplier. I will look at clusterbuster and D3 once i'm done with this reply.

To Bob, thank you for all the info. I have read most of it online but trusted my Dr to know what to do. He referred me to a Neuro who did know CH and is following his guidelines. I will forward your information to him, you can be certain.

To Mike, yes i know Dr Sheval is relatively new but it looks promising. Really hoping for a permanent solution you know. And I'm not "jumping" to surgical by all means, it's been 12 yrs and have tried many drugs and just desperate for a perm solution. Jason and Bob already covered the middle part of your comment, thank you tho. And the last part, yes i've started a log. I just hope my doctor will put it to good use.

Again thank you for the support all, I feel much better knowing that there is a community out there so knowledgeable. I felt so alone for the past 12 yrs and so helpless, it's really getting depressing.

A little about me, I'm 35 and had the CH since 23. It started while i was working 9-5 night shift in a warehouse. It wasn't so bad the first 2 yrs but after that, pure hell. Went 5 yrs untreated, then saw a Neuro who prescribed i can't remember what garbage. I turned to acupuncture and thought that's what made it stop until i realize my CH were 2months cycle every year. Took 4-5 yrs before i realized it. Then 2 yrs ago my new doctor referred me to another Neuro who prescribed what I mentioned in previous post. I went 2 yrs and 2 months without one but they started again this last Saturday. That's why i'm here. The treatment i have now seemed effective since the longest CH i've had since Tuesday (when i got the meds) was 30-40min and only one out of 7 CH was a 10/10. Most are between 4-9 avg of 6.5 i'd say. They used to last 2hrs and 10/10 pain everytime untreated.

I have 1 boy age 3 and twin girls 1 1/2. I'm a stay at home dad so please understand that it really ain't easy dealing with CH and them, but they keep me smiling between attacks.

I smoke about 5 cigs a day and half a joint at night. Really helps with sleeping. Not a big drinker never was. Alcohol really is a trigger for CH so can't have it during cycles. I've read that shrooms may help?

Anyway, sorry for the long post, i've just never had anyone to talk to about this.

It's Shevel and he's a quack.

          Potter

I have a question about Verapamile. You all say that my dose is too low at 3x80mg/day, can I take 4 or 5 pills a day insteadto be in the 320/480mg/day range? Can it be dangerous? Should I ask my Dr 1st?

I have increased my O2 myself to 15 lpm and it seems to make the CH dissapear quicker and last longer before the next attack (2-3hrs instead of 1-1 1/2hr).

I will start the D3 regime. My wife got these D3 vitamins over the counter but they are only 1000 IU per pill and it says i should only take 1/day on the label. Can I augment to 10 pills a day to reach the 10k/day that Batch recommends? I will also look into the magnesium, calcium, fish oil (i'm allergic to fish does it matter?) and the centrum silver multivitamine.

Stay on the 02 for double the time it takes to abort. For example if it takes 10 mins to become totally pain free, stay on it for another 10. The relief should last longer.

Hi Jee,
Always seek professional advice from your doctor/neuro before messing with your medication.

Hoppy.

Always work with your doctor around changing doses for verapamil. There is a risk of it affecting the PR interval on your ECG (relating to how your heart works), so regular ECGs around dose changes and every few months are required.

For many countries the maximum vitamin D3 dose in a single tablet for over the counter sales is 1000IU, which just means that people end up taking multiple tablets. Or some have imported larger tablets from overseas which means less tablets and is often cheaper.

I'd also make sure that you are taking the other ingredients in the recipe too along with the D3. Batch is the guru in this area so he is worth getting in touch with either through this thread or via PM.

For the fish oil I'd be very careful since you have a fish allergy. This is a question to direct to your doctor before you use it.

Hello everyone, I've been a sufferer of CH for 30 years now. In the early years I've been told by doctors that they were migraines, imagined,  and many different meds until at the age of 30 a doctor knew what they were and put me on oxygen therapy, what a life saver for me! I'm going through a Cluster season now and for the first time I fell asleep with my mask on set at 10! I woke up to an empty tank, and now I'm worried I've done some kind of damage. If anyone knows or experienced this please reply, not sure if I should call the doctor or be looking for some side effects from this. I'm also afraid to use more incase another one sets in this morning. Thanks in advace for any advice.

So if you cut the strap on your mask this won't happen.  :)  Anyway, you're fine, it's just oxygen.  Before, I started using o2 properly I did it many times myself, woke up feeling really refreshed but fine.

5000 iu vitamin D3 can be bought from iherb.com

Alternatively you could take 10x 1000iu, but who wants to take 10 when you can take 2.

Iherb is very reasonably priced and even with the shipping costs to England it's far cheaper than I can here.

jason1212 wrote on Apr 27^th, 2014 at 1:13pm:

So if you cut the strap on your mask this won't happen.  :)  Anyway, you're fine, it's just oxygen.  Before, I started using o2 properly I did it many times myself, woke up feeling really refreshed but fine.

Thank you New Guy!

cluster32 wrote on Apr 27^th, 2014 at 4:58pm:

jason1212 wrote on Apr 27th, 2014 at 1:13pm: So if you cut the strap on your mask this won't happen.  :)  Anyway, you're fine, it's just oxygen.  Before, I started using o2 properly I did it many times myself, woke up feeling really refreshed but fine. Thank you New Guy!

Sorry, Thank you, Jason!

Hi Jee,

Iv'e recently found this site too and it's really helped me after 25 years !

I have 3 young children aswell youngest is 2 ..so totally understand where your coming from!

much love
Jo

Many years ago I used a smaller dose of verapamil and gave up on it. Finally found a doc who really understood CH and he slower ramped me up to 960mg before it completely killed off the beast (at least for the cycle - that fracker never truly dies). I had a few EKGs before he increased the dose that high, so I strongly recommend not to mess with verapamil (or any med) without direction from your doc.

Having said that, every cycle I give a knowing smile to the other blue pill knowing that once it's in my system at a high enough level I will be pain free.

A little update, i've been pain free in 80hrs!!! A little relapse last night but still, and nothing today so far. I'm taking 1 d3/day (1k IU), Oxygen at 15lpm and Verapamil 80mg x3/day. 2 weeks down 6 to go!

Thats so good to hear,surgery to me would be the very last resort. The monster will tear through that small dose of D3,you really should read the whole regimin and even it you have to order the higher dosage pills get on the stuff and stay on it hopefully you will never have another attack.