I am starting to use this for the first time tonight. Any advice on best time to take it with relation to bed time? I am currently being hit every night around midnight, even without going to sleep first.

I just got off the Topamax.  I took the evening dose with dinner.  Eventually, I ramped up to two doses a day, once in the morning and the other, 12 hours later.  My high dose was 100mg total.  I also experienced tingling in the beginning which, according to crazymeds (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) is normal and means that the med is likely to be effective for headaches.  I was put on it as a preventative once the Verapamil was no longer an option.  My neurologist and I tried other meds but I was too sensitive to them vis a vis side effects.  I have been on the D3 regimen for 3 weeks and my hits have stopped!  In the beginning of using the D3, I was still episodic and the kip rating was lower than I ever experienced in cycle.  I decided to get off the Topamax because, for me, it was ineffective and I was still aborting 3 hits a day (my normal when in cycle) and so far, so good. 

I wish you pf days and nights!

Word of caution I know everyone is different and I don't want to discourage you and your treatment but be careful. Watch for any signs of side effects. Tremors dizziness muscle control anything that doesn't feel right and let them know right away. I'm trying to detox from topomax as we speak. Spend day in hospital yesterday having seizures was only at 200 mg a day.  The side effect creep up on you before you know it. D-3 def a great place to start  my first pf nite in 5 weeks was the nite I started d-3 and add melantonin

Thanks for the feedback. I only took that one dose. I turned into a zombie and said never again. I couldn't afford to be a space case with a big job interview 3 days later. So, I scrapped the Topamax idea and rocked the interview. I can't justify taking a med that completely changes who you are and makes me a blathering idiot. The mood swings I get from verapamil are bad enough.

Never like to hear about a med not working. Just glad to know it wasn't quite as bad a reaction. Been doing this for 30+ years now. Hang in they will find the right med for you. My neuro is waiting for my dna mapping results now. It is way they can customize the med treatment to work with you not against you. Might wanna look into it

Great! My neurologist just increased my dose to 200mg...and it doesn't seem to be working. Other than making me forget absolutely everything! I also read that it has caused some people to lose their hair....i will freak out.

I was on Topamax for about 6mos. I found it best to take about 30 mins. before bed time.

I had to stop taking it when I realized the cognitive side effects I was having from it. I have to make snap decisions at work and it just wasn't working out for me.

Good luck, i hope you find some relief.

I'll wager your neurologist didn't discuss the following statistics on the following adverse events reported to the FDA over the last eight years on the use of Topomax, Depakote, Verapamil, Olazapine, Lithium, and Prednisone as cluster headache preventatives...

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If you check the following link and plug in the preventative prescribed by your neurologist...  you'll find the following deaths reported to the FDA:

66 (.22%) deaths associated with Topomax
85 (.32%) deaths associated with Lithium
228 (.34%) deaths associated with neurontin
168 (.36%) deaths associated with Depakote
513 (.51%) deaths associated with prendisone
229 (1.02%) deaths associated with Verapamil
1110 (1.06%) deaths associated with Olazapine      

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In contrast...  there were no deaths reported to the FDA among people taking vitamin D3 or oxygen over the same eight year period...  Hmmm...

Now let's look at the efficacy and risk:reward ratios for these cluster headache preventatives based on the efficacy as reported here at CH.com in the cluster survey... and the online survey* of CH'ers taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3.

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Preventative         Risk of Death    Efficacy
Depakote                 .36%              1%
Topomax                  .22%              ?
Verapamil               1.02%              7%
Lithium                     .32%              1%
Prednisone                .51%              9%
Vitamin D3*                 0%            79%

Makes you kind of wonder... Huh?

The bottom line...  As a cluster headache sufferer... you need to be your own best advocate when it comes to prescribed medications to control this disorder...

Take care,

V/R, Batch

HOLY SHIZBALLS! I am freaking out now. I have two kids, one with special needs. I have to be around for a long time, and not just because I'm not fond of dying. Going to have a "Come to Jesus Meeting" with my neurologist.

I just got off Topamax...after a month of 100mg a day.  No help.  Just tired and felt bad in general.  Did not help me at all.  I am in week number six of this cycle and I was praying it would help.

I just read about the D3 reg...I will be trying it.  I will keep ya posted.

Jammie, Metrolamar,

Be sure to ask your neurologist or PCP for the 25(OH)D lab test.  This is the serum level metabolite of vitamin D3 that's used to measure its status. 

The normal reference range for serum 25(OH)D concentrations is 30 to 100 ng/mL.  Unfortunately, too many physicians will say you're normal with your 25(OH)D at 31 ng/mL.

As cluster headache sufferers, (CH'ers), we need to keep our 25(OH)D serum concentration around 85 ng/mL.  This ensures we're comfortably in the green zone (60 to 110 ng/L where the majority of regimen users experience a pain free response).  A serum concentration of 85 ng/mL also provides sufficient 25(OH)D reserves to keep our immune system happy (It can consume 25(OH)D rapidly) and still provide sufficient reserves to prevent cluster headaches.

If your 25(OH)D is ≤ 30 ng/mL you can safely do what other CH'ers have done taking 20,000 IU/day vitamin D3 with a once a week loading dose of 50,000 to 100,000 IU vitamin D3 on top of the daily dose.  An accelerated vitamin D3 dosing schedule like this will elevate your 25(OH)D into the green zone more rapidly than the maintenance dose of 10,000 IU/day.

Most CH'ers continue this accelerated dose for a week after experiencing a pain free response then drop back to the 10,000 IU/day maintenance dose.  If there's no response after 30 days, drop the dose to 10,000 IU/day and ask for another 25(OH)D lab test.  In either case, a second lab test for 25(OH)D after 30 days on the anti-inflammatory regimen is prudent.

I've taken both Nature's Bounty and Nature Made brands of the 5,000 IU vitamin D3 softgels and both are effective.  Don't forget the 1000 mg/day Omega-3 Fish Oil and the vitamin D3 cofactors: magnesium, zinc, boron and vitamin A (retinol) at RDA doses.

The complete list of supplements and suggested doses are at the following link:

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If your neurologist or PCP gives you a ration of crap about this regimen, keep a print out of the above link handy.  This regimen costs roughly 20 to 30 cents a day...  It's very safe, very healthy for you and 80% effective in preventing cluster headaches equally among episodic and chronic CH'ers...

If it works as expected... get the entire family on it... See the potential health benefits at the following link:

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Doses of 4,000 to 5,000 IU/day for kids, 7,000 to 10,000 IU/day for adults and 40 to 50 IU/lb for infants appear very safe doses according to data from the above link.  Again, the best indication of an effective dose of vitamin D3 is the 25(OH)D serum concentration...  60 ng/mL (150 nmol/L) for non-CH'ers.

My wife has been taking 15,000 IU/day vitamin D3 since December of 2010 and her PCP says her labs look like they came from a 25 year old woman...   She kicked the heck out of 75 last Christmas and runs my backside off with all the energy.  Go figure...

Take care and please keep us posted.

V/R, Batch

Thanks Batch,
I am 37 years old and have been suffering with these headaches for years....since I was 20 years old.  I suffered a long time without knowing what I was experiencing.  I finally went to a Sinus Doctor and  I described to him what I was dealing with and he said "son you have Cluster Headaches".  He put me on predisone and it worked like a charm (or it seemed).  After a couple of visits with the neuro and more predisone I was having trouble walking.  Turns out the predisone causes something called AVN.  Bone death in the hips,  I had to have a double hip replacement at 29 years old.  No more predisone for me.

Since then I have been using oxygen and Zomig to tame the beast (but still suffering badly).  This current cycle I am in started in Mid July and The Neuro wanted me to try Topamax and I did,  That drug is nasty.  I was so tired and depressed.  I could not eat, sleep, work, ect...  I am really excited about the D3 Reg and have high hopes for PF days.

Metrolamar,

I suspect you'll continue to experience a pain free response to the anti-inflammatory regimen wiht 10,000 IU/day vitamin D3.

Once you've been completely pain free for a few more weeks, let your neurologist know what you're taking and that you want the 25(OH)D lab test.  You can also let him know you want to come off the other preventatives.

Do hang on to the oxygen...  It can come in handy should your immune system react to a viral infection and put a drain on your 25(OH)D reserves.

Take care and please keep us posted.

V/R, Batch

Batch, I just started the vitamins and I am not pain free right now (far from it, cant sleep at all hardly).  But I am hopeful.  I will keep you posted as I am very excited about the thought of this pain free stuff.
Thanks Again

Metrolamar,

Sorry about that...  My mind flipped a bit... or possibly a byte in the process of translating screen names to real names.

In your case, an accelerated vitamin D3 dosing schedule may be in order.  Many CH'ers have found increasing the daily vitamin D3 intake to 20,000 IU/day and adding a loading dose of 50,000 to 100,000 IU vitamin D3 once a week on top of the daily dose, speeds up the process of building 25(OH)D reserves and going pain free.

I realize that may sound like a large dose of vitamin D3...  Please let me assure you...  it isn't.  Some physicians have used a single loading dose of 600,000 IU vitamin D3.  That loading dose resulted in an average 25(OH)D increase of 60 ng/mL in three days...

Once you go pain free... my previous post to you will still apply.

Take care and please keep us posted.

V/R, Batch

I took your advise and took the 50,000 today and I will do the rest of the week at 20,000.  I plan to schedule the test next week to discover the level I am at.  I wish I could have had the test done before starting the Reg...But waiting is not an option when this much pain is involved.  As everyone does I am sure....I have tons of responsibilities and people who count on me.  The past six weeks I have let a lot of people down.  I know that I should not worry about stuff like that but I cant help it.  I am the type person who makes the wheel turn,  my wife has totally been by my side but I don't want lean on her too much.  Ill be on here letting you know how thing are going.  Thanks

" my wife has totally been by my side but I don't want lean on her too much"

I know exactly what you mean. Supporters also suffer. I have seen my husband become drawn, pale and exhausted through lack of sleep, with a daily headache of his own (not CH) caused by stress, in turn caused by a feeling of helplessness. He had to go to work day after day, feeling ill, after being up night after night with me. He has some illness of his own to cope with, so it seems so unfair that he should suffer for mine. It makes me feel so guilty.
Maz.

I was awake at 3am too....I took a Zomig at 4 in order to get some sleep.  I know what you mean about your spouse suffering with you.  My wife Dawn has been through these with me several times therefore knows how it goes,  but seems to be getting worse as I get older.  The cycles last longer and I swear the pain seems worse.

I am trying the D3 reg that Batch is talking about and I will say that the hits last night that woke me up every hour were not quite as bad.  I have high hopes that the vitamins will help me get pain free as they have some others.  I am also coming off of Topamax which has been filled with chills and tremors, no appetite.  These headaches are miserable!!!!

todays update.....

I took the vitamins (20,000 d3) today,  still having hits regular.  The o2 is knocking them out in 15 minutes or so.  I am not looking forward to trying to sleep tonight. :-[
I still have high hope for the vitamins though.  I spent some time today reading some others experience with the d3 reg. and I know it can take time. This is only the third day I have been taking the vitamins so I must be patient.  The withdrawl from the Topamax seems to be getting better,  That was some nasty stuff.

Metrolamar,

Start dropping a 50,000 IU loading dose of vitamin D3 once a week on top of your daily 20,000 IU dose of vitamin D3 until the beast decides to vamos...take it on the lamb... beat feet...

Keep taking this dosing schedule for another week after you go pain free to ensure you build a therapeutic level of 25(OH)D to keep the beast on the run...

That should help you go PF a lot faster...

Take care,

V/R, Batch

Thanks Batch,  Will do....I like how confident you are about the pain free days coming.
I was hit over and over last night while trying to sleep (as normal).  The worst hit lasting over an hour,  even with the o2.  I just had breakfast that my wife fixed up.  Took all my vitamins for the day.  We will see how it goes.

Well, great news! I decided to give Topamax a try again due to bein desperate after 6 months of my worst and longest cycle ever. I am glad to report that I have been pain free for 3 weeks and only 1 beer test induced CH the week before that. So, sans beer a full month. I started drinking again Friday and have been tolerating beer and wine just fine without a CH for the lat 5 days. So for me, for this cycle, its been nothing short of a miracle drug. FYI my max dose was 200mg a day and I have been at max for about a week.

Good for you YesDog....Love to hear that you are free of this terrible pain.  I am jealous,  as I love beer.  Cant wait till I can have some beers. 
The Topamax I am not sure about the miracle,  but if its working for you.  I see where you say it is a miracle.  Congrats Again.  Enjoy