I just posted this in getting to know ya. Thinking this board may help w exposure to my questions below, highlighted in yellow


Posts: 2
USA
Gender: female
New! First post.
Today at 7:20pm Alert Board Moderator about this Post! Quote Modify Remove  Hello Everyone! Hola! Bonjour! G'Day! What's Crackin'?

I'll tell  my story as briefly as possible,
then tell you my plan, and then
ask a couple questions.

Thank you Daren, for creating this site, and thanks as well, to all of you contributing members.  The posts I've been reading are important and helpful. The things I have read from some of you have made me feel so grateful. I've cried like a baby, when reading your personal stories, and felt deep happiness when hearing of your hard-won successes. What a great community you are!

My journey to today has been one of more than 30 years.
During the last 30 years, I have suffered horrifically,  and nothing that I or anyone else has done, has resulted in a diagnosis.
That is, not until I...

SELF-DIAGNOSED...in December 2020.
Yes!!!!!! The patient named the illness!
"Hello. My name is Robin, and I am a Chronic Clusterhead."

As I said, December of 2020 was when I found my TAC diagnosis. Less than 2 months later, on Feb. 18, 2021, I met w/ a new neurologist, who confirmed within 15 minutes, my December findings of TAC (Hemicrania continua).

This all began when I was 33 yrs old, and a new, first-time mother. I started noticing headaches every morning- I was waking up with them. I started going to doctors.
Within about a year, the headaches had become 24/7- no breaks. I went to doc after doc, Rx's, tests. No answers.
From that point, let's just call it 1992, the symptoms 'cemented' into the pattern they have remained in, until now. Those symptoms have consistently been the exactly the same. No variation.

Symptom area is unilateral, R side:
R eye, above, behind, around and under- watering, puffy with crushing pain.   
R nostril: waters.
R upper cheek bone aches.
R temple- over, over around behind  ear, into mandible, under ear.
R neck in Occipital area severe pain - can be pinpointed.
R neck from base of skull into upper trapezius severe ache.
Sensory- Always extremely sensitive to Bright light  causes both eyes to hurt- R eye more intensely.  Must wear sunglasses when in glaring snow or sunlight. Oncoming car headlights are painful.
Regarding eyes: recent eye exam shows significant change in vision in R eye, as well as other R eye-specific issues. Now that I have TAC diagnosis, I will re-address those issues.

Patterns:
I have no cluster cycle. Doesn’t go away.
No changes in any symptoms or areas of sensitivity.
Poor sleep.

Types of Practitioners Seen:
Neurologists
Neurosurgeons
Chiropractors
Massage Therapist
Acupuncturists
ENT
Anesthesiologist
Physical Therapists

Procedures:
Aside from the above specialists who's procedures would be obvious, I have had:
Facet joint injections
RFNA (Radio Frequency Nerve Ablation)
Spinal decompression (Machine traction)
Cold laser therapy
Tens stim
Steroid injections at occipital trigger point
ACDF ( anterior cervical discectomy and fusion)
Emergency Room visits for pain shots

Diagnostic tests:
Numerous MRI's with and without contrast
CT scans

I have been prescribed dozens and dozens of Rx's, and had painful, invasive, expensive procedures.

Pain management:
For 25 of these 31 years, I used various Rx's, ibuprofen and acetaminophen to crawl through the days and nights. It has all been horribly inadequate. 5 yrs ago, I was finally sent to a pain-management doctor. Since then, I've been managing ( somewhat ) the pain, with opioids. As of this writing, I am on the following Rx's.
For pain:
Oxycodone 20 mg 4 x day
Oxycontin ER 30 mg 2 x day
Meloxicam 15 mg 1x day
Methocarbamol 750 mg 2 x day
~~~
For depression and hypothyroid:
Adderall 10 mg 1x day
Levothyroxine 15 mcg

The use of the opioids has allowed me to function to a better degree, though they have their downside. Brain fog, lack of motivation, tiredness etc. Doc says some of those symptoms are Rx-related and some is depression-related. Depression- resulting from chronic pain, and also from a serious life-trauma experienced 2016.

Last procedure, done Nov. 2020
was the ACDF. I went into that procedure, hoping and thinking it might resolve my then still-undiagnosed pain. Neurosurgeon didn't tell me that it probably would not. He did the procedure to prevent paralysis, due to vertebral impingement on my cervical spine. During my recovery weeks,  I was reading support group page for ACDF patients, which led me to FB page:
'T.A.C.'. From there, I found Clusterbusters- where I saw myself for the first time in my life. It took me about 15 minutes- max, to find my exact subset of TAC.
Wow. talk about mind blown. I still shake my head.

Present day:
My plan is to begin my treatment  by following  Batch's D3 regimen. Thank you, Batch. My pain management doc is 1000% on board with this. He ordered the prelim tests and I’ve done them.

Ive read through the entire D3 paper several times and have a good understanding of the regimen and how the components are interdependent. I just need a little hand here, if someone can help me, please.

The most current info I have re: D3 regimen, is from 2016-2017, along with a few  snippets I've seen, by Batch, subsequent to then.
All my questions pertain to the loading schedule. Im going w/ the 2 wk plan., and will order everything as soon as I am clear on the following.

[highlight]*I see that Batch has mentioned using liquid D3.  Is this an update to the published regimen? Can I use the liquid in place of the gel caps?

*I saw mention of dosing of D3 at 5 day intervals, instead of daily. Is this schedule for the maintenance period, for the loading period, or both? Does it matter if the dose is not taken daily?

*Re: B-50. What is the dosage amount of B-50? I saw that it is to be taken for 3 months only, though I didn’t find the dosage amount.
Is the B-50 a stand-alone vitamin, or should there be another vitamin/nutrient with it?

*Re the adjustments for BMI either < or > 25. According to regimen notes, >25 requires additional 100K I/U D3 for loading schedule. In what increments is that ADDITIONAL  amount to be taken? Should it be divided by the 2 weeks and added daily, or, in larger doses, less frequently?

My labs results are:
all within range, except:

D3 25(OH)D3  =  23.4 ng/mL

I am super excited to begin. I want to be sure that I’m doing this correctly.
If someone or some people can please help me with the answers to my 4 questions above, I will be very thankful.

Should I cross-post my questions into another section of the message board, for more exposure?

Thanks to all of you.
Wishing you PF days and nights,
RobinBird

Hello Batch,

Thank you for replying to me... and so quickly!

I have to run out now for most of afternoon. I will be back in touch when I return.

In the meantime, I don't have a preference on communication method.
My navigation of this board is still a little slow.
In fact, I'm not sure if this is the pm, or the regular board I'm on at the moment.
So, we can do phone, text, pm, or email- whichever you prefer.

I already have the lab work completed. All results in front of  me.
The D3 was as suspected:   25 (OH)D3 = 23.4 ng/mL

I'll be back later. Thank you  again.

Robin      
(email: robinbradleynow@yahoo.com / ph: 772-559-9330)