I'm not really sure if this is the correct place to post this, so I'm sorry about that. I need advice from all of you wise people. I'm losing my mind - going on 3 months of this cycle. Just completed 2nd steroid course and headaches rebounded full force. Today marks 1 week on full D3 regimen - I intend to continue. My neuro is clueless about clusters...and in general not a great doctor but it will take months to see someone else. He mentioned a preventative would be the next course of action. I REALLY want the D3 regimen to work, and I REALLY want this cycle to be over. I also can't think straight any more. I guess I just need some help and advice on how to move forward, and what to do next. Any advice would be appreciated.

Don't worry too much if you've got the perfect place for putting something, people will still read it and reply. Even for people who have been here a while, we're never perfect.

It is pretty common for CH to rebound with full force after a round of steroids, so don't worry about that.

With D3, whilst a lot of people get results in under a week, it can take others longer, even if they are doing everything according to Batch's instructions.

Did you do a loading schedule? That can help speed things up.

Otherwise reading through Batch's posts will give other info. You can do this by clicking this link - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hi Genever,
Sorry you're having such a bad time. 

I started out on a preventative (verapamil) at 80 mgs 3xday (in 2016) and it has been upped by my Neuro to taking 120 mgs 3xday (in 2016) which has been more effective ----but not exactly perfect.  So, I added the D3 regimen (in 2017) and everything is going VERY well for me with this combo.  It took a few weeks for the D3 regimen to kick in but my CH is down to 1-2 per month and they are very mild. 

Verapamil -- as a preventative -- has worked well for me in lowering my BP to normal (115/75) and I haven't had any adverse reactions.  This particular medication seems to be one of the best preventatives out there and has proven results.  If adding a preventative is something that you'd like to try, please discuss with your Dr. to see what would be best for you.

With all that said, please don't give up on the D3 regimen.  I can't recommend it enough.  It has certainly been the best thing that I have done for my CH.  It may take longer for you to see its effectiveness as MikeNZ suggested but the benefits are wonderful.  My hope is that if you continue with the D3, you will see the same benefits as so many of us have.

Please keep us informed on how you are getting along. 

Wishing you PF days!
Payg

Hey Genever,

You should have responded to the vitamin D3 by now.  Are you still on the 50,000 IU/day vitamin D3 loading schedule and taking the Omega-3 fish oil along with all the vitamin D3 cofactors?

Was there no joy with the Doxylamine or Diphenhydramine?  I found taking 25 mg of the Benadryl (Diphenhydramine HC) every four hours during the day and 50 mg at bedtime worked very well in stopping uncontrollable CH while on the anti-inflammatory regimen.

You may have a problem with vitamin D3 absorption... Try popping the vitamin D3 soft gels between your back teeth and swirl the contents under your tongue for 5 minutes without swallowing or drinking any fluids for a sublingual application.

Take care and please keep us posted.

V/R, Batch

I greatly appreciated Batch's personal attention - e-mailing me with tips on the regimen. I did go out and get all of the vitamins/supplements. I may be a rare case, but I got no relief, even after several weeks. YMMV.

I have been on all the different iterations over the last 5 years and it hasn't worked for me either...

Hey Dtruett, CDog,

What were the results of your latest 25(OH)D labs after at least a month taking the anti-inflammatory regimen? 

The mean 25(OH)D serum concentration reported by chronic CHers experiencing a favorable response or a complete cessation of CH symptoms to this treatment protocol is 100 ng/mL.  If you toss in a 1 sigma (standard deviation) you get a range of 80 to 120 ng/mL. 

For reference, I'm a CCHer and I've maintained my serum 25(OH)D at 140 ±50 ng/mL for the last 3 years.  My serum calcium stays within its normal reference range and my PTH is always in the lower third of its normal reference range so my PCP just smiles and annotates my medical records...  He has a copy of the treatment protocol.

If the week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day and 50 mg at bedtime didn't make a dent your CH patterns for the better... have you tried taking the Baking Soda Tonic?

You won't find this in print except here at CH.com in posts I've made, but CH are pH sensitive.  For some reason, usually diet, we tend to drive our normal systemic acid-base balance towards more acidic than neutral with a lower pH.  This low pH (higher acid) favors CH triggering mechanisms.  The solution to this problem is to shift the pH balance higher to a more alkaline condition.

We do this by drinking a simple baking soda tonic every four hours throughout the day and prior to bed.  It's important to wait an hour after eating so as not to interfere with the stomach's digestive process. During digestion in the stomach, there's a high acid content for at least an hour after eating to break down the food we've eaten.  After that the body neutralizes the stomach contents with big squirts of pancreatic juices high in bicarbonate prior to allowing the contents to pass into the small intestine.

You make a Baking Soda tonic with a teaspoon of good old Arm & Hammer baking soda (sodium bicarbonate) in one cup (8 oz) of cold water.  All you need as a half cup of this tonic every four hours.  The simple thing to do is mix some up and pour it into plastic water bottles you can take to work so it's always available.  Drinking 2.5 liters of water a day is always a good idea for CHers.

You can also add the juice of a half lemon to the one cup mixture above or a teaspoon of raw apple cider vinegar for a change in flavor.

If in doubt, the recipe is on the side of an Arm & Hammer Baking Soda box or you can check out the following link:

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

The baking soda tonic can take upwards of a day to take effect.  Accordingly if you're in a hurry, like most of us when the CH beast is jumping ugly, you can always take Bismuth Subsalicylate, a.k.a. Pepto-Bismol.  A tablet every 4 hours should be sufficient.

If you've tried all of the above, you've been on this regimen for over a month, your serum 25(OH)D is 80 to 100 ng/mL or higher and the CH beast is still jumping ugly, please take the online survey at the following link:

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

I need accurate data on the efficacy of the anti-inflammation regimen in preventing CH.  I've nothing to gain and too much to lose by using junk science to "Hockey Stick" the efficacy curve.  This regimen is already more effective than the published efficacy figures for verapamil by a comfortable margin... and I might add, with none of the verapamil adverse effects.  Be sure to comment that you've tried the above in the comments section of this survey.

Thanks, take care and please keep us posted.

V/R, Batch

Thank you all for your input. Since starting the D3 regimen, I have noticed the pain shifting - if that makes sense. It’s more of a general overall pain and some sharp pain on the opposite of my cluster side. I do still get cluster pain in the usual place but not nearly as often. I have added Benadryl and take it every 4 hours. This did break up the cycle for me about a month ago. It was a great week. But then everything started again and this time it’s not responding that well.
I started with 50,000 D3 for 12 days, now on 40,000. I am taking the other supplements but I must admit I’m not great at remembering the fish oil or k2. That is something I need to work on.
I also get migraines and this whole week has been rainy so the barometric pressure has been killing me. This would happen outside of a cluster too. Dealing with both is so painful and confusing. I will continue to be more vigilant about the regimen. It’s so frustrating that it worked before and this time it’s not going so well.