Cluster Headaches Treatment

Hi Pablo,

I take verapamil (calcium channel blocker) daily at a high dose. This has been the best treatment fro me and changed my headache pattern from chronic to episodic.

When a cluster cycle starts I am prescribed steroids to try and break the cycle. This has a 50/50 success rate for me.

To abort individual headaches I use high flow oxygen at 15 litres per minute through a non-rebreather mask and injections of sumatriptan.

I have recently been put on the list to try a greater occiptal nerve block the next time my cluster cycle hits. The treatment regime i am on is first line in all the UK guidelines. It works to keep me episodic as I was chronic before.

I think there are various reasons why some people tolerate certain medications better than others and its difficult to know what will work. Sometimes there is a bit of trial and error between you and the doctor until you settle on something that helps. There isn't a one thing works for everyone treatment.

If you have no heart problems, I would start with verapamil and make sure that you have an ECG/EKG at every dose increase until you find relief, make sure and get sumatriptan injections as other triptans are not as effective (generally) and injection works quickest so is better for CH. The other must is the oxygen it seems to work for most people too.

Hope this is some help to you

Mariebeth

Hi Pablo,

 

I also take Verapamil and it helps very much.  I take it along with Melatonin every night, and if I miss my meds it throws me in an all out frenzy as far as my cluster headaches go.  Oxygen is a MUST if you are chronic as I am.  I have had Clusters for 10 years now, and I honestly don't know how I made it through the first 2 years without oxygen....So for me, I highly suggest it.

 

I have tried everything on your list over the years...and the only really helpful things besides what I have mentioned, are triptans like Imitrex.  It helps at the onset of my clusters, but if I use them, I better hold on to my seat because when the triptan wears off, the cluster that follows is ALWAYS worse then the first.

 

Again, I am chronic and fight this battle daily....and every sufferer is different.  My neuro has told me that every cluster sufferer has a med mix that will work to help ease the pain, it's just all about finding which one that works for you.

 

Good luck, I know this disease is hard to live with...but until there is a cure, all we can do it pray and fight!!

 

Eric

Hi Pablo, 

I've been a sufferer since the age of 12, I'm now 32. For me, when the attacks are in the first phase, short term doses of corticosteroids as an emeidiate abortive medicine, This worked for some bouts but not always. Oxygen therapy works very well on high flow 15lts, The only issue I find is that any treatment that works well becomes something to depend on. Followed by the anxiety of not having oxygen with me. I was struggling to carry it everywhere with me. I was introduced to Triptans. The tablets only start to kick in when the attack is coming to an end. Sumatriptan injections on the other hand, are my life line. Works within minutes and aborts the attack every time. So far. 

I haven't tried the verapamil long term suppressant, mainly due to potential health implications. I would rather take my chances with attacks and abort them where possible. 

 

Good luck!

Hi Pablo,

Oxygen is by far the best and safest abortive. However, it must be used properly to be effective. You must have a regulator that goes to at least 15 lpm and a good mask. Here is a link to a mask; O2ptimask.

Triptan inhalers and injections to abort are generally effective, but are not friendly to the body and usually can't be used with certain heart conditions. Also, they tend to increase the frequency of attacks for many people.

As for preventatives;

Avoid prednisone at all costs. It ravages the body. 

Verapamil (calcium channel blocker) is effective for some, but tends to lose effectiveness and doctors tend to continually up the dosage. It also has some serious side effects including; constipation, low blood pressure, heart damage and general weakness.

There is also a vitamin D3 regimen that has worked for many people. It is taken in high dose along with magnesium, calcium, zinc, vitamin K, and fish oil. It is good to have your D levels checked with a blood test, since D3 can be toxic (but rarely since it takes very high levels)

Other options that have worked for many are 5MeO DALT (illegal in some countries) and psilocybin mushrooms and LSD (illegal in most countries).

Good luck and feel free to ask questions. 

Darrell

Hi pablo i was on verapimil for over 7 years but on a very high dose 1200mg daily. this in the end gave me a compliete hart block i stopped the meds and everything went back to normal , but so did the cluster 8 weeks of the worst i have ever had,   but because i was medicated for so long  i was out of touch with the pain i had my injections which i used and over used,  12 aday most days,  i was probibly getting so meny headaches due to the over use of the injections. my specialist in the end gave me a nerve block in the back of my head on the side i get the headache that was december 2013. i have changed my life style since then in the gym everyday weight training , running circuit traning , eating healthier and i have give up smoking. i havint even had a shadow attact since the nerve block. and now i am un medicated and have been for over 1 year. i hope this gives a bit of encouragement. i see it as its about blood vesils and with training in the gym like i do can only expand blood vesils

Hi Pablo, I got my diagnosis in 2007, chronic CH.  I try different types of medication. I had a lot of side effects. That's why I prefer to take no maintenance medications.  Oxygen works for me, when the attacks provoked by weather changes. Redbull helps sometimes, when i'have not not enough sleep. I also use the injections and pills Imitrex Sumatriptan. If this does not help, I ask the cortisone!

greetings from België

Pablo,

I am an episodic sufferer for ~25 years now. A bout usually begins every year around this time. Once I start getting a few headaches here and there I start taking Verapamil and Depakote and Corticosteroids as preventatives and Imitrex (Triptan) injections, Stadol Nasal and Oxygen Therapy as abortive medications. Even with all this I wind up in the hospital for intravenous treatments with a cocktail of drugs. 

Regards,

Genio

I've had bad experiences with medicines. They have severe long term side effects. I rather prefer unconventional herbal treatment.

OXYGEN all the way! I also hate taking all of the medications. For years I took verapmil, topamax, toradahl, prednisone, depakote, and a huge list of pain medications and anxiety meds. I am breastfeeding and asked for something safe and FINIALLY I got my O2 tank and it knocks the headache out in 15minutes! I pray others can get the oxygen because there are no side effects and it works in over 90% of sufferers according to research!