As you already know, that's a really low dose of verapamil, but with your history, am appreciative of his concern to bring you up slowly. Not sure about the constant background headache though......

Are the night hits after you go to sleep? If so, try 9 mg of melatonin about 30 minutes before bedtime. Helps many avoid the night time hits. You may have to adjust that dose up or down, takes some trial and error.

Lithium is an effective prevent for many, if the verapamil fails at the higher doses, or if you don't tolerate the increases, it'd be worth discussing with your neuro. It's been my magic bullet for over 15 years.

Is the oxygen effective in knocking the hits down? If  you haven't already read the oxygen info link, be sure and do so. There's a wealth of valuable info there to make sure you're getting the full benefit out of it!

Glad you stuck your head in, hoping you catch a short go round.

joe

FIRST! Let one doc be in charge of your treatment. They should keep one another informed but treatment can be compromised by too many fingers in the pie.

Print this common used protocol and use it as a discussion tool with the doc who is going to be leading your treatment plan.
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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).

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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.
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Read alot here. Much material will apply to you and it will give hope....

Thank you all for your advice, encouragement and support.  I feel better already.   

Finally fell asleep last night with a headache but did not wake up during the night with a hit.  First time in weeks with no night time hit.  Did not even have a shadow this morning.  Very out of character for the way things have been going these last 8 weeks.  It sure feels good to not have any pain today!  For that I rejoice!!!

I have tried melatonin hoping to stop the night time hits but like the verapamil I had to start out with a low dose and gradually increase it one milligram at a time.  I only managed to reach 4mgs before I began having side effects from the melatonin.  That was not enough to break the cycle unfortunately. 

The oxygen is effective at knocking down the hits I get in the middle of the night.  The neurologist prescribed oxygen therapy with a flow rate of 10 liters/minute but I have been fortunate that the valve allows me to increase it to 15.  I have a non-rebreathing mask but it does not seem to seal very well and I still struggle with how exactly am I suppose to use it.  Inhale and then exhale into the mask or am I suppose to exhale outside of the mask?  I find when I wake up from a dead sleep and the pain is so severe my coordination is also lacking big time.   

I would like very much to have one doctor who could be in charge of my treatment but I currently have Kaiser Insurance so I have to play by their rules.  My primary care doctor did recommend me returning to the neurologist for continued care and explained to me that I would not need a referral to see him and that I could make an appointment with him any time I wanted.  So perhaps it was my misunderstanding that I saw the primary care doctor earlier this week instead of scheduling an appointment with the neurologist I had seen back in May.  I am in the process of learning how this all works.

Thank you for the information you have provided I will print it out and take it with me to my neurologist appointment to morning. 

Sorry it has taken me 3 days to get back here and let you all know how my appointment with the neurologist went.  The pain has just been so freaking intense I have not been able to put my thoughts together let alone try to type them. 

This was my second appointment with this neurologist and I find him to be a very personable guy willing to listen and answer any questions I might have.  Yet anything I might bring up always goes back to what he knows or thinks he knows. 

We discussed many different options but he ended up just increasing my dosage of verapamil by 40mg.  So I am now taking 40 in the morning and 80 at night.  He suggested I do this for 10 days and then add an additional 40 to my morning dose.  He says it is very important to increase the dosage slowly.  I think I can agree with that because every time I increase it my headache becomes worse for about 12 to 24 hours. 

The second suggestion he had was to give me a prescription for some type of nasal gel like lidocaine spray.  He thinks inhaling this through my nostril on the same side where the headache is might help.  I tried to explain to him that oxygen would take away the screaming headaches that wake me up in the middle of the night and it was the constant shadows that I needed help for so how would lidocaine help with that?  He just thought I should give it a try.  While I was in his office he made a call to the pharmacy to make sure he was clear on what to order and if they had this item he then asked them to fill the script.  I was reluctant to even try this but since he went to all the trouble to call the pharmacist I decided to give it a try.  But when I arrived at Kaisers in house pharmacy a few minutes later I was told that the medication had to be ordered and would not be in until Monday.  Since I have mixed feelings about how this will work or if it will work I did not go to pharmacy today to pick it up.  Has anyone here had any experience using this nasal spray? 

His third suggestion was to prescribe a muscle relaxer, Flexeril. He said I was a very thin woman who looked a bit tense.  What the h? 

During my first appointment back in May he recommended I read a book called, Heal Your Headache The 1*2*3 Program.  Since that visit I have read the book cover to cover and tried to adhere to the steps in the book.  During this time my headaches have only become worse. I had several questions for him with regards to statements made in the book but once I began to ask questions it became clear to me I do not think he has read the book.  He was quick to tell me he just returned from a conference at Harvard and this book was very highly recommended to all headache patients.

When taking verapamil are there any tests I need to check the level of it in my blood or test to check how it is affecting my heart? When I asked the neuro this question he referred me back to my primary care doctor stating he did not take care of those types of things.  ??? 

The only thing I know to do at this point is go back to my primary care and plead with him to send me to headache specialist.  Surely Kaiser must have a neurologist who specializes in this field and would be more up to date with how to help someone with cluster headaches?

I am gradually reading my way through this website and hope to learn more.  Thank you all for being here to listen and offer advice from your own research & experiences. 

Hello,

I just thought I'd jump in and say hello  also that my doctor prescribes the Imigran nasal spray for me - 20mg sumatriptan.  It's not a magic bullet but it does minimise the intensity.  I generally stick with the 02 at a flow rate of 15lmp.  I have used verapamil on and off over the past 5 yrs or so.... sometimes I think it increases my shadows and lengthens the cycle and so sometimes I choose to go without for a cycle.  Having said that my head seems to be all over the place these days (thought I had it sussed  ) so not sure if that is caused by the verapamil or its just generally morphing of its own accord.

I'm surprised that your neuro is not willing to prescribe oxygen because it really is the number one abortive that has no side effects.  Knowing what I know now I'd agree that it might be an idea to check into welders oxy.  So many of us here absolutely swear by it as a life changer...   Your neuro seems to be on the right track with the verap - so not sure if you should try to find another neuro??   Sorry not being more helpful.

It's horrible to think of you suffering unecessarily... I really hope that the verap kicks in soon and you get a decent break!!  Keep posting and let us know how you are getting on, yes?

Wishin you all the best,

Kate

Good on ya Joe!  Tellin it like it is 

Glad you stuck your head in Rachel, hoping the beast is giving you some peace this holiday season!

Joe

All good advice above so I won't repeat. I will add that they can check the verapamil level through blood test, have had that done several times. Also Lithium levels if you go that way.

Also, welcome to the board! -Chris