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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> How things are going...

Message started by Payg on Feb 17th, 2019 at 4:55pm

Title: How things are going...
Post by Payg on Feb 17th, 2019 at 4:55pm
The answer is JUST FINE ;D!  It's been a while since I've posted but I did want to offer some info from my recent check-up with my Neuro. 

I had my annual MRI done for my MS.  There were no significant changes and all is stable.  When I go back in July I'm going to see if my Neuro wants to change my MRI to every other year since we've had no changes in several years now.  I also started an exercise routine a couple days/week.  Sort of a New Years resolution but I also really need to increase my range of motion and gain some strength back in my arms and legs.  With my grandson (Jack  :-*) who is now 16 months old, I gotta keep on moving, huh?  So, excellent news there! 

The even better news is that I haven't had a CH since May 2018.  My Neuro asked, "So what do you think has been the most beneficial for your headaches"?  My answer was...the D3 regimen (Thank you Batch!).  I told her that the verapamil had only helped knock them back a bit which was a pretty obvious conclusion from my CH chart.  To me, it was adding the D3 that has helped me remain pain free.  She smiled and agreed and told me that "I wasn't broke so she didn't think I needed fixing" and we would be keeping things just as they are.  I still have two oxygen tanks in the bedroom IF they are ever needed and other assorted abortives IF needed.  Hopefully they all gather dust forevermore!

I do hope this post offers some encouragement to others out there in CH Land!  I don't know what your magic formula may be, but I do hope you and your doctor can find it soon.  My advice is don't give up!  Keep on fighting the good fight!  I'm over here cheering you on! 

And a special thanks for all the help and encouragement I've received from the good folks here at  As always, you guys are the BEST!!

Much Love & PF Days to All,

Title: Re: How things are going...
Post by Peter510 on Feb 17th, 2019 at 6:25pm
Great post......great news.


Title: Re: How things are going...
Post by Mike NZ on Feb 17th, 2019 at 6:46pm
Wonderful post to read.

Long may your O2 tanks gather dust.

Title: Re: How things are going...
Post by AussieBrian on Feb 17th, 2019 at 8:56pm
Maintaining your O2 rig is one thing,  PayG,  but be careful not to clean it.

Dust on tank top is a wonderful, wonderful sight to behold.

Title: Re: How things are going...
Post by Batch on Feb 18th, 2019 at 9:03pm
Hey Payg,

Please let me echo the other responses to your update that this is wonderful news.  It's great to hear the anti-inflammatory regimen with vitamin D3 prevents your CH. I'm also very pleased to hear it's also holding your MS in remission.  This is exceptionally good news!  Do you have any recent results from your MRIs or latest lab tests for serum 25(OH)D, calcium and PTH?

On a related note, I've followed Dr. Cicero Coimbra's work in Brazil where he's been treating his MS patients with a vitamin D3 protocol similar to the anti-inflammatory regimen for the last 12 years.  I started sending him results from the survey of CHers taking the anti-inflammatory regimen in 2014 and have exchanged several emails with him ever since.  95% of his MS patients as well as patients with other autoimmune disorders are in complete remission on his protocol.

The big difference between the anti-inflammatory regimen and Dr. Coimbra's protocol is treats his MS patients with vitamin D3 at doses of 1000 IU per Kg body weight per day... At 80 Kg, I would be taking 80,000 IU/day vitamin D3 on the Coimbra protocol, 8 times more vitamin D3 than I suggest for cluster headache.  Of course his protocol also calls for a strict avoidance of calcium supplements and calcium rich foods like all dairy products.  It also calls for 2.5 liters of water a day.

Take care and thanks again for the wonderful feedback.

V/R, Batch

Title: Re: How things are going...
Post by Payg on Jul 13th, 2019 at 3:25pm
Hi Everyone!
Sorry about the delay in response.  Way too many things going on as of late.  Kinda need things to slow down a bit so I can catch my breathe. 

Well, my test results seem to be just fine.  I went for my annual wellness exam last month and had my bloodwork done.  My PCP didn't see anything alarming or that needed to be looked at more closely.   
VIT D 25 72.0
Did not have the PTH done this time.  Not sure why other than I forgot to mention it to my PCP.  I'm still HA free and go back for a follow-up with my Neuro in two weeks. 

My last MRI for my MS was good and there were no changes or any new lesions.  The only thing I'm having an issue with at the moment is fatigue, vision problems and muscle weakness which comes and goes.  I'm not one to do a whole lot of complaining and I usually put up a good front.  It's just a little annoying when I can't do the things I want to do or used to do.  Sorry, guys, just a little frustrated at the moment.  My fatigue level is pretty high today, and I didn't sleep well last night.  Definitely something I'll be talking about at my next neuro appt.

Otherwise, I'm okay, headache free (woohoo!), and I'm still able to get out of bed each morning.  Also, I have an awesome grandson, a new grand baby due in October (a little girl), a job I love, I just got a new car, I sold my old car, my Mom and Dad are doing good, I'm still married to a wonderful man (depending on the day, of course  ;D).  So, honestly, life is pretty good when I consider all things great and small. 

I hope that everyone here is doing well.  May you all have many wonderful pain free days and nights ahead. 

Best Wishes,

Title: Re: How things are going...
Post by Peter510 on Jul 13th, 2019 at 6:59pm

Another great, inspiring post.

Thank you.


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