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Please Help Me!!! (Read 1108 times)
Pfunk
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Please Help Me!!!
Aug 12th, 2021 at 8:39am
 
Hey. I'm 50 years old and have been here along time. Gotten help from tons of you through the years as I have been suffering from these headaches as long as i can remember. Doctors said I had allergies, migraines you name it! Not until i came on board here were we able to come up with the right diagnosis.
About 2.5 years ago I was diagnosed with sleep apnea and started using a CPAP. The attacks literally stopped the next day.
But about a month ago The Beast came back, with a vengeance! Im now getting no relief whatsoever! as soon as i can abort one attack, another hits me 1-2 hours later, worse at night of course. I feel totally helpless. For the first time, Ive come to understand why they are called "Suicide Headaches"! It has completely taken over my life and the life of my family. i try to hide it from my kids but my wife is taking it hard, aas theres nothing she can do. Ive lost alot: job, car and any possibility of taking a new job.
I'm at my wit's end here. O2 works but im playing hell getting it prescribed again. But even when i do use it, 1-2hours later... Trex works most of the time. I'm on the D3 regimen and even that doesnt seem to be helping as it has in the past.
PLEASE HELP!!! Desperate!!! I'm really feeling like I'm at the end of my rope! Cry Cry Cry

Pfunk
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AussieBrian
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Re: Please Help Me!!!
Reply #1 - Aug 12th, 2021 at 9:58am
 
Have you considered it might be a headache syndrome different from CH?

There's other joyous diseases such as Paroxysmal Hemicrania which result in dreadful headaches every couple of hours and each one is remarkably similar to a CH hit,  just much shorter lasting.

Happily such conditions are quite easily managed so it might be worth thinking about as a light at the end of the tunnel.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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pattik
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Re: Please Help Me!!!
Reply #2 - Aug 12th, 2021 at 11:18am
 
Pfunk

I'm so sorry you are going through this! The first thing that comes to my mind is to try adding  Benadryl (Diphenhydramine HCL) in the evening before bed. My allergies can allow a new cycle to break through my D3 regimen. It can make you drowsy, so I take it near bedtime.

As to the amount,  I have read everything from a 12.5 mg child's dose to a 50 mg adult dose. When my worst allergy season is approaching, I take 50mg @bedtime. Histamine receptors are involved in the pain cycle. So if you can get ahead of it with Benedryl, it can help.

Batch has advised on this many times, and it might be useful for you to PM him.

Take care,
Patti
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Pfunk
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Re: Please Help Me!!!
Reply #3 - Aug 12th, 2021 at 1:54pm
 
Brian. TY I have been reading up a bit on other things as of late as a few things seem a bit different. like the fact that it comes back sometimes even 30 minutes after abort. itd be great if it was something easy rather than the beast.
Patti. Ty as well. i usually take Benadryl in the evenings for allergies anyway. But have not as much lately because i have again become afraid to sleep as usual with the beast
 
Thanks
Pfunk
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MDR
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Re: Please Help Me!!!
Reply #4 - Aug 13th, 2021 at 6:54am
 
Pfunk,
Went through the same thing a few years ago 8 to 10 a day  they  will pass I tried everything nothing seemed to work it just takes time.

Mark.
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Pfunk
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Re: Please Help Me!!!
Reply #5 - Aug 14th, 2021 at 10:35pm
 
Not saying it’s solved but did go to the doc the very next day and mentioned the paroxysmal hemicrania as it did sound very much less ke what may be happening with me(TY Brian). He started me on n indomethacin twice a day. So far I think gotten hit only twice each day and each hit was far less painful full and able too be aborted for n 10-15 mins. Been doing this a long time so I know It coming or be Just a freak thing but thank God for small favors! I’ve been able to get some sleep, which h to haven’t in the last month. Ty all for responses and help!  Love my CH family
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« Last Edit: Aug 14th, 2021 at 10:39pm by Pfunk »  
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Batch
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Re: Please Help Me!!!
Reply #6 - Aug 15th, 2021 at 1:10pm
 
Hey Pfunk,

Have you seen your PCP/GP for labs of your serum 25(OH)D3, calcium and PTH (Parathyroid Hormone)?  25(OH)D3 is the first metabolite of vitamin D3 that's used to measure its status.  That you haven't responded to the vitamin D3 regimen tells me your serum 25(OH)D3 is likely too low to provide a therapeutic response with a significant reduction in your CH frequency.  This also means your vitamin D3 intake is too low.

Over the last 5 months, several CHers who were slow to respond to this treatment protocol found a loading dose combination of 100,000 IU/day vitamin D3 (2 Bio-Tech D3-50 50,000 IU water soluble capsules) and 0.5 mL/day (~ 40,000 IU) of Micro D3 nanoemulsion taken sublingual for 4 to 6 days works wonders in elevating serum 25(OH)D3 rapidly with a concomitant reduction in CH frequency.   I order both the Micro D3 and Bio-Tech D3-50 from amazon.com.

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Serum 25(OH)D3 data from the study of 313 CHers following this treatment protocol that's been running since December of 2011 are illustrated in the following graphic.  The Black normal distribution curve on the left represents the baseline 25(OH)D3 serum concentrations before start of regimen. All of these CHers were experiencing an active bout of CH.  The green normal distribution curve represents the 25(OH)D3 response after ≥ 30 days following this vitamin D3 treatment protocol. 

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As you can see 82% of CHers who started this treatment protocol experienced a significant reduction in CH frequency from a mean 3 CH/day down to a mean of 3 CH/week in the first 30 days and 54% reported a complete cessation of CH in the first 30 days.  Followup with some of the study participants indicates the efficacy in both categories improves over time if they stick with this vitamin D3 treatment protocol.

Most CHers who have tried this combination loading schedule achieved a favorable response in 5 to 7 days.  Some have reported staying on this loading schedule longer, up to 10 days.  If there's no favorable response after 10 days, lower the vitamin D3 dose to 50,000 IU/day and see your PCP/GP for labs of your serum 25(OH)D3, calcium and PTH.  If your calcium serum concentration is within its normal reference range, go back up on the combination loading schedule for another week or until you've experienced at least two full days completely CH pain free which ever occurs first, then see your PCP/GP for another round of labs. 

If your serum calcium is still within its normal reference range, start a taper by stopping the Micro D3 nanoemulsion and add a day between the 100,000 IU loading doses, i.e., a loading dose every 48 hours for 4 to 6 days then add another day (72 hours between doses) for 4 to 6 days. Continue the taper until you're down to a vitamin D3 dose of 100,000 IU/week (An average of 14,000 IU/day).  This will be your initial vitamin D3 maintenance dose.

I started using this combined vitamin D3 loading dose in April of this year to remain CH pain free due to an allergic reaction caused by the heavy spring pollen.  I started titrating my maintenance dose of 50,000 IU/week upwards in March until I was eventually taking 140,000 IU of this vitamin D3 combination four times a week (a total of 560,000 IU/week) by mid May.  The following 4-year chart of my labs for serum 25(OH)D3, calcium and PTH tells the story.  What this chart doesn't show is I've tapered the vitamin D3 dose down to 140,000 IU/week and I'm still CH pain free.

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My PCP had no problem with my 25(OH)D3 serum concentration at 277 ng/mL as my serum calcium remained within its normal reference range and my PTH hadn't dropped to low.  The rest of the labs for my annual physical were also in the "green."  He did order a 24 Hr Urine to make sure I wasn't dumping calcium in urine (Hypercalciuria).  Here are the results:

24Hr Urine 05/28/2021 03:07 PM

Tests: (1) Calcium, 24Hr, Ur w/Creatinine (003324)
  Calcium, Urine 24hr       146 mg/24 hr                26-354
  Calcium/Creat.Ratio       118 mg/g creat             14-318

Serum 25(OH)D3 at 277 ng/mL (692 nmol/L). No Hypercalcemia and No Hypercalciuria.

I provide information on this vitamin D3 treatment protocol solely for educational purposes regarding potentially beneficial therapies for Cluster and Migraine Headache.  Please discuss this treatment protocol with your PCP/GP or neurologist before starting it.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Aug 15th, 2021 at 4:55pm by Batch »  

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Pfunk
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I love YaBB 1G - SP1!


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Re: Please Help Me!!!
Reply #7 - Aug 16th, 2021 at 10:47am
 
so to update. Things seem to be trending in the right direction since I started taking the indomethacin. it does appear the dosage may need to be higher as mt doc only prescribed 50 mgs. I was referred to a new neurologist and hoping to get some more answers there. That being said, I have only gotten hit twice a day since Friday and the severity and duration of each attack was considerably lower(pain=@6-7 and able to abort with O2 within about 10-15 mins.)
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Peter510
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Re: Please Help Me!!!
Reply #8 - Aug 16th, 2021 at 5:05pm
 
Pfunk,

One of the standard tests for diagnosing Cluster Headaches is to prescribe Indomethacin, and if it works, then it’s not Cluster Headache. I was told this by the leading Primary Headache Neurologist in Ireland, many years ago.

Think back to Brian’s post mentioning Heracrania...and discuss this with your new Neurologist.

Wishing you well,

Peter.
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