Hi all. I'm happy to have found somewhere online to read up on cluster headaches, and find solid advice and support from other sufferers, as well. Let me tell you a bit about my background. I'm 32 years old, female, and work in litigation (aka, a very stressful job). In early 2009, I had a strange episode during which I had horrid pain and bloating in my abdomin, as well as numbness and tingling on the entire left side of my body. I went to both my general practitioner (where I was only able to see the nurse practitioner, who told me I must of pinched a nerve) and to the ER, who told me they could not find anything wrong with me. About the same time, I noticed that I was getting headaches around my left eye on a constant basis. It took me a while to realize what exactly the symptoms were. I had the sensation of an acute, throbbing pain on the upper interior corner of my left eye, near my nose. On top of that, I was feeling pressure and pain around my eye generally, and I felt like there was an invisible string pulling my eyelid down. These attacks always present themselves mid to late morning, and last throughout the afternoon into the early evening. On the worst days, the pain radiates down the side of my nose and into my upper jaw. My eye will also water. My doctor initially thought it could be sinusitis, and tried various treatments to counter the pain. I do generally have sinus issues, and have even had sinus surgery in the past, but it was on the other side of my face. When the sinus treatments did not get rid of the headaches, my doctor decided he thought I was suffering from cluster headaches. He put me on Verapamil (120 mg daily) and gave me Migranal to stop attacks when they start. Well, the Migranal did not work, and the Verapamil didn't do anything other than help me notice the cycle of when my headaches were worse, and when they were minor (I'm chronic). I finally was recently sent to a neurologist. He confirmed the cluster headache diagnosis, and doubled my Verapamil to 240 mg daily. He also prescribed me a nasal spray of Sumatriptan. I am also going to begin participating in a pain management program next week. Luckily, my insurance is covering it. So far, the Verapamil is still ineffective. The Sumatriptan does provide some relief, but after ten minutes or so, it all drips down the back of my throat. The taste from this is so horrid that I can't bring myself to use it. Plus, one "prescription" is only six doses! How is that supposed to last for a month? On top of the clusters, I also have Polycystic Ovary Syndrome (PCOS). I'm starting to wonder if I have a lazy hypothalamus. I also have an aunt who was diagnosed with cluster headaches, and her symptoms mimic strokes at times. I'm a little unique in the fact that I'm female, I'm relatively young, I don't get night attacks, and I'm chronic. I can't think of any period of time that lasted more than a few days where I did not have a headache, or at least some form of pain. On pretty much any day that I don't get a headache, I have an underlying, simmering pain/pressure that just seems to hover around, waiting to turn into something more. I think this is what you all refer to as "shadows". And, despite the fact that I don't get night attacks, the energy it takes for me to push through the work day while in basically constant pain is so draining that by the time I get home, I pretty much am just a lazy lump with no energy for anything. I'm also a restless sleeper in general, so that doesn't help anything. I would really love any tips and advice from fellow sufferers on what supplements to try, what works to stop attacks when they start (other than medications), any diet changes, etc. I'm honestly sick of relying on medications that don't seem to work anyway. I was reading up on the boards about the D3/Omega 3 supplements working miracles for people. I intend to try this out, with my doctor's blessing. How about the calcium/magnesium/K2 supplements? What is the dosage people are using? I really appreciate everyone's time, and any helpful tips and suggestions.

Hi Danielle and welcome,
For the vitamin D3 Regime i use.

10,000iu vitamin D-3 /day
400mg calcium citrate /day
500mg magnesium citrate /day.  I use natural factors you get
both in one pill 250mg i take 2/day
Natural factors fish oil 1/day
Centrum multi vitamins 1/day.The biotin & vit k are in this.

Hoping this helps you beome pain free
as it has many of us clusterheads.

Hoppy.

Hi Danielle

Go to the "medication, treatment and therapies" board and look for a thread titled "123 days pain free...and I think I know why" by Batch. It's a long thread so be prepared for a good read, and you will find the D3 therapy there.

To cut a long story short, I take 10,000 iu D3, 500 mg calcium citrate, 500 mg magnesium and 1000 mg fish oil, every day. I've been on it for almost 3 months and I'm pretty sure it's working. I have still gone into a cycle - I can feel all the symptoms - but nothing more than shadows. It's important to have the blood test though, so you know when you have reached the "pain free" level.

As for the sumatriptan, ask your doctor for the auto injections. They are MUCH better than nasal spray or tablets and work for me every time, killing the pain completely in 5-7 minutes. The injection is easy to do and all you feel is a quick sting. Compared to a full blown cluster headache it's a walk in the park. I wouldn't be without them now and always carry them with me.

And here's a tip which may give you a quick fix in an emergency. Try chugging down a red bull, really fast at the first sign of pain. It's the combination of caffeine and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do. It doesn't work for every one, but many people on these boards swear by it.

Hope this helps a little
Maz.

Hoppy and Maz, thank you very much for your tips. In terms of supplements, I currently take:

One multi-vitamin daily
Magnesium 240 mg (a once daily tablet)
Calcium w/ D3 (2 tablets daily, I think it's something like 1200 mg)
B12 - 1 tablet daily

I'm thinking I'm going to double the magnesium. Can I ask, what is the difference when the citrate is together with the calcium/magnesium? Also, I read in the named thread something about K2? Is this to prevent over-saturation of the calcium?

I will say I am very happy to hear that caffeine can actually help. I was afraid I would read it was not helpful and didn't enjoy the thought of having to give up coffee!

I'm going to have to look into the sumatriptan injections. I had allergy shots twice a week for two years as a kid, so I have no fear of injections!

Hi Danielle - how long have you been at 240 verapamil?  It takes a few weeks to build up.  Also, you can ask your doc for a predisone taper starting at 80mg and tapering off over two weeks - most CH suffers get immediate relief and use this time to get the Verap. built up - also 240 is a starting dose some need up to 900mg a day - mine was up to 320 before I stopped the attacks.

D3 - regiment - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Read it over, print it out, give to DR.

Read also the O2 page on this site and get your doctor to write you a script for O2 - many here swear breathing O2 at levels high enough to support hyperventilation will stop a CH in 10 - 20 minutes..

Danielle wrote,

One multi-vitamin daily
Magnesium 240 mg (a once daily tablet)
Calcium w/ D3 (2 tablets daily, I think it's something like 1200 mg)
B12 - 1 tablet daily

I'm thinking I'm going to double the magnesium. Can I ask, what is the difference when the citrate is together with the calcium/magnesium? Also, I read in the named thread something about K2? Is this to prevent over-saturation of the calcium?

Hi Danielle,
On your first? i'ts best to forget what you are doing now
and follow the regime as i listed to the letter and get the
best outcome. Have another look i've put a couple of tips.
You will also need to get a blood test after 1 month
25 (OH) D to check your serum concentration it needs
to be around 80ng/ml to get the best result.

On your second? I'll leave that one for Batch to answer.
He will help you on all your concerns.

Hoppy.

The blood tests not only shows when you have enough D3 to become pain free, but also shows the level of the calcium, so if it's getting close to the upper end of normal you can adjust the dose.

Calcium and magnesium comes in different kinds - sulphate, maleate, oxide, citrate etc. Calcium and magnesium are not easily absorbed into the body, but citrate (citric acid) is absorbed very quickly and easily. Your body will gobble up the citrate and the calcium kind of gets sucked in. If you have one of the other kinds take it with pure fruit juice or eat an orange. You may find the citrate will loosen your bowels. If this becomes a problem simply adjust what you take. Vitamin D3 is fat soluble so the fish oil helps that to be absorbed. And the best thing is, all these things are good for you even if you don't have CH.

It's the high dose of D3 that is the most important. But D3 can draw calcium from your bones which is why you need a supplement. All the components of the regime can be bought cheaply if you shop around on line. The ordinary stores don't carry the high dosage so you have to take a bottle full every day and no one can afford to buy that. Have a look at iherb.com.Even with the shipping costs from USA to England, it's still cheaper than buying them here. There are lots of other on line stores you could look at.

Good luck getting what you need, and keep us posted.
Maz.

Hi All,

I've been on the D3/Omega 3 routine for a week. I've been taking 10,000 IUs of D3, and 3,000 mg of fish oil daily. My other vitamins bring the D3 level up to about 12,000 IU daily.

I'm glad to report that I definitely am noticing a difference. I have been having mainly shadows with a few light flare-ups. The shadows have consisted more of pressure/tension than pain. Still, I'll take that over attacks anytime. At least I can still function easily with shadows.

I have not tried a loading dose yet. This weekend, I plan to take a 50,000 IU dose to see if this will help expedite getting myself to the pain free zone.

How many of you are also taking the K2 supplement? Do you find it makes a difference?

I'm hoping all this D3 will also serve me well during the upcoming cold season. Last year, I was horridly sick more than once, and wouldn't you know it, my D3 was also low.

Thank you again to everyone for your help and guidance. I hope to get to the point where I can manage the pain through supplements and without prescriptions.

Just a suggestion on the Imitrex injections: I would suggest you look into the vials and syringes. They are cheaper and you can better control the dosage you need. The autoinjectors give .5ml, or 6mg. The syringes allow you to draw from the vials (which come in .5ml) however much you want-2,3 or more mg. It stretches out the Rx quite a bit. blessings. lance

Hey Danielle,

It looks like you're off to a good start with the anti-inflammatory regimen.  Don't be afraid to up your daily intake to 20,000 IU/day for a couple weeks along with the 50,000 IU loading dose once a week on top of the daily dose for a couple weeks as well.  After two weeks on this vitamin D3 dosing schedule you can drop back to 15,000 IU/day. 

See your PCP for another lab test after 30 days on the above schedule.  It should add an average of 60 ng/mL to your starting concentration.

Most of us CH'ers in the Northern hemisphere are also experiencing the seasonal shift with less sunlight.  That means the daily maintenance dose of 10,000 IU/day that works well in summer may not be sufficient in winter when 15,000 to 20,000 IU/day might be needed to stay pain free.

Regarding the vitamin K2...  There are some recent studies reporting vitamin D3, magnesium and vitamin K2 have a synergistic effect.

See the following two links for more info on vitamin K2:

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

The main reason I added vitamin K2 to the anti-inflammatory regimen was to help direct serum calcium away from soft tissues and arteries towards building bone mineral density (BMD).  As such in this role, it has little to do in preventing cluster headaches and more to do with healthy BMD and arteries.

Take care and please keep us posted.

V/R, Batch

Hello newby here. Long time cluster sufferer. This may be a dumb question but I can't figure out how to make a new post, can someone steer me in the right direction?

Hi and welcome,
On your  :question. Just click onto the link Getting to Know
Ya on the message board, then click start a new topic at the
top of the page.

Hoppy.