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My D3 regiment so far (Read 7576 times)
helm_r
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My D3 regiment so far
Dec 15th, 2017 at 9:53pm
 
Been following my D3 protocol for about 2 weeks now. I had to go back on Prednisone last Sat, no choice. My attacks were at 3 hours a piece with 1 early evening and 4 late night, about 1 1/2 hours a part. It gave me a bit of a break but I went down from 60 mg to 50mg last night and got hit with an attack at 4 am for about 45 mins. As I wind down, -10mg every 3 days, the attacks will eventually go back to the monster 3 hour just like the did a week ago.
I got a script for oxygen but no one here in the Sacramento, CA area will fill it because I am still on Louisiana's Medicaid until the end of the month and probably will not officially receive MediCal (California Medicaid) until sometime in January. Oxygen would deliver me from this 12 hour hell every day but it looks like it's not going to happen. I called EVERY oxygen supplier in a 90 mile radius but no one will help. Not even my doctor back in New Orleans, he said I need to find a new doctor since I am now out of state, will help...what an not a very nice person.
So anyways, I'm hoping the D3 will start kicking in soon or at least while I'm winding down off the prednisone within the next 4 or 5 days. I started with the baking soda drink everyday to help my PH. I may kick up the D3 from 10,000 to 20,000 starting tomorrow just to give it a bit of help.
I fear the sundown and the coming of the night. I don't want to fall asleep. I have a shadow in my head all day now, with my veins on the side of my head always puffed out now. I have nightmares all night, always in between the attacks, and once my attacks go back into full 3 hour mode, I'm lucky to get 3 hours of sleep spread through out the night. I'm currently trying Melatonin, started at 10 mg a weeks ago and now currently at 20 mg with little affect.
I am praying for a miracle now, but to be honest I am close to losing my mind and so very close to 10 on the Kip scale.
Keeping fingers crossed for something positive from D3 early next week. Thanks for listening. Cry
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Mike NZ
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Re: My D3 regiment so far
Reply #1 - Dec 16th, 2017 at 3:07am
 
Many people have used welding oxygen when they can't get hold of medical oxygen.

We all know the fear that can come with not having an effective abortive to hand. Fingers crossed that the D3 kicks in soon to take that fear away.
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Batch
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Re: My D3 regiment so far
Reply #2 - Dec 17th, 2017 at 2:28pm
 
Helm,

I've emailed you the latest version of the anti-inflammatory regimen CH preventative treatment protocol.  Read it carefully and discuss it with your PCP...

If I read your post correctly, you're not taking enough vitamin D3.  You should have started the 12-Day (2-Week) vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for 12 days then drop back to an initial maintenance dose of 10,000 IU/day vitamin D3.  Stay at this dose for 30 days then go back to your PCP for another set of labs for your serum 25(OH)D, total calcium and PTH.

Taking 10,000 IU/day vitamin D3 will work to prevent your CH but it will take much longer than starting with the accelerated vitamin D3 loading schedule as illustrated in the following graphic.

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This loading schedule "Squares" the 25(OH)D response curve elevating your serum 25(OH)D in a matter of days rather than weeks up to 80 ng/mL where most CHers respond favorably to vitamin D3.

As you've already taken ~ 140,000 IU of vitamin D3 you can take 50,000 IU/day for another 9 days before dropping back to the initial maintenance dose of 10,000 IU/day.  That should bring you close to the target total loading dose of 600,000 IU of vitamin D3. I suspect you'll experience a significant drop in the frequency of your CH long before the 9 days are up.

If you've not experienced an drop in the frequency of your CH after 4 days on this loading schedule, many CHers have found starting a week to 10-day course of Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours throughout the day and again at bed time produced very favorable results.  Be careful and not drive while taking Benadryl as it will make you drowsy.  If you need to drive, take 50 mg when you're home for the day and another 50 mg at bed time.

Take care and please keep us posted.

V/R, Batch
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Re: My D3 regiment so far
Reply #3 - Dec 21st, 2017 at 7:54pm
 
I have 4 more days to go on the 50,000 mg of D3 before I dropped to 10,000. For the most I've been attack free since Monday, with a few shadows here and there. I'm still on Prednisone but I'm starting wind down on the dosage with 7 days to go. I'm assuming this is also affecting the abstinence of the cluster attacks so I won't be sure until after next Wednesday where I stand with the attacks. I started at 60 mg of Prednisone and now currently at 30 mg. The last time I came down the Prednisone at 30 mg I started getting nailed with attacks. Maybe the D3 is starting to take affect but as I said before I need to wait until the Prednisone is done to be sure.
Back in New Orleans after some unfortunate events in California. A friend is letting me sleep on her couch. Starting over with Medicaid, Food Stamps and various doctors for my other medical needs. Basically starting all over again. I'll let ya'll know after the 1st of the year where I'm at with my attacks.
I hope everyone has a blessed holiday and a safe new year.
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helm_r
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Re: My D3 regiment so far
Reply #4 - Jan 5th, 2018 at 12:21pm
 
ok, so I was attack free for about 2 weeks up until 3 days ago. I had an attack tuesday at 3 am and then again wednesday morning about the same time. This morning I had a nasty shadow around 8 am, felt like it was ready to become an attack but I may have aborted it with some benadryl and b.c headache powder. I felt better around 9 am.
I'm still having problems with daily headaches, waking up with a headache everyday now, sometimes lasting off and on all day. I'll address this with my neurologist. My medicaid expired for some reason and they are working to correct that. Hopefully its reactivated by the end of next, but until then I can't see any doctors.
i will keep an eye on all of this and note any changes in my headache log.
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Batch
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Re: My D3 regiment so far
Reply #5 - Jan 5th, 2018 at 1:56pm
 
Helm,

What you're describing with the up-tic in frequency of your CH indicates you need a higher vitamin D3 dose.  The quick fix is two to three days at a vitamin D3 dose of 50,000 IU/day followed by an increase in your maintenance dose by 5,000 to 10,000 IU/day.  In other words, if your maintenance dose was 10,000 IU/day, bump it to 15,000 or 20,000 IU/day for a month then see your PCP for labs of your serum 25(OH)D, total calcium and PTH.  As long as your serum calcium remains within its normal reference range and PTH remains in the lower third of its normal reference range, there's no problem with the new vitamin D3 maintenance dose or the elevation in serum 25(OH)D.  I'd also make sure to drink 2.5 liters of water a day.

If the up-tic in your CH frequency was due to a major allergic reaction (entirely possible), 25 mg of Benadryl (Diphenhydramine HCL) every 4 hours during the day for a week to 10 days should do the trick.  Just be careful and don't drive while taking this much Benadryl as it will make you drowsy.  If you need to drive or be super alert, hold off on the Benadryl until you're home for the day then take 50 mg and another 25 to 50 mg at bedtime. If the up-tic was due to a minor allergic reaction, a day or two of Benadryl should be sufficient.

If the up-tic is due to an infection, I'd jump on Vitamin C at 1000 mg every 3 to 4 hours during the day for a week to 10 days.  Our bodies lack the enzyme needed to produce endogenous vitamin C so we need at least 2000 mg/day from supplements and diet anyway...

I'd be careful with the BC Powder (Aspirin 1000 mg and Caffeine 65 mg)...  I avoid the NSAIDs, (Aspirin, Tylenol (Acetaminophen), Aleve (Naproxen), Advil (Ibuprofen)...  They all cause GI tract bleeds...  even the "heart healthy" 81 mg Bayer Aspirin... I've found chewing up 20,000 to 50,000 IU of vitamin D3 and swirling the contents under the tongue for five minutes without swallowing works more effectively in relieving pain than aspirin with no GI tract bleeds.

Take care and please keep us posted.

V/R, Batch
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Re: My D3 regiment so far
Reply #6 - Jan 5th, 2018 at 3:39pm
 
Hey Ryan,

Good to hear from you.

By the sound of it you are well on your way with the D3 and that is a huge improvement on how you were when we first talked.

My advice is to follow Batch’s guidance to the letter and that final hurdle is likely to be overcome fairly quickly.

Keep the faith.

Peter.
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Re: My D3 regiment so far
Reply #7 - Jan 6th, 2018 at 9:20am
 
Thanks for the sound advice, I'll do as you say. Started having multiple last night but so far they are not the severe attacks as they were 4 weeks ago, but they still hurt, lol. I'll keep you guys posted, again thanks for the help, you guys rock.

Ryan
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Re: My D3 regiment so far
Reply #8 - Jan 8th, 2018 at 10:42am
 
I was thinking, my attacks returned a few days ago, this about the same time I ran out of vitamin K2. Would this cause the return of the attacks? They're pretty much back at full strength after last night. I have been following the increase in Vitamin D3 at 50,000 for the past 3 days. Should I continue with this? Do I need to go out and buy more K2? Its been part of the regiment since the first week of December, but its also in my multi-vitamin.
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Re: My D3 regiment so far
Reply #9 - Jan 8th, 2018 at 5:01pm
 
Do continue, the fact that it has been working until you ran out of the K2 suggests that it should work again.

I'd get some more K2 for sure.
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Re: My D3 regiment so far
Reply #10 - Jan 8th, 2018 at 10:36pm
 
ok, i'll pick some up tomorrow, thanks man.
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Re: My D3 regiment so far
Reply #11 - Jan 9th, 2018 at 11:51am
 
Ryan,

Several CHers in similar situations found that a few days of Benadryl (Diphenhydrmine HCL) at 25 mg every four hours, stopped the "burn through" CH hits while taking vitamin D3 loading doses.  You've tried it before...  so give it another try.

It's also time to drop back from the vitamin D3 loading dose of 50,000 IU/day to say 20,000 IU/day and evaluate...

The Vitamin K2 should help.  Are you still taking the Vitamin B 50 or B 100 complex?  I spoke with Dr. Stasha Gominak at the 20th Workshop on Vitamin D in Orlando, FL last March.  She's been suggesting a vitamin D3 regimen very similar to the anti-inflammatory regimen.  In fact, I included her suggestions on adding the 3 month course of Vitamin B 50/100 Complex in the anti-inflammatory regimen three years ago.  At the workshop she said she's now suggesting her patients stay on the vitamin B 50 Complex full time...  I'm still evaluating this.

Take care and please keep us posted.

V/R, Batch
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Re: My D3 regiment so far
Reply #12 - Jan 10th, 2018 at 11:30am
 
Ok, i'll drop back to 20,000 IU for the D3. I take B50 complex everyday, 50 mg. Yesterday I picked up more K2 and took a double dose since I was out for 3 days. Last night was a huge improvement from the night before, I had 2 attacks, one at 8 pm and another at 4 am. They lasted for 30 mins as compared to the hour long attacks the night before, and they were not as intense. I also added taurine to my daily doses as I am trying to curb my redbull intake as well as other soft drinks. I haven't been able to do my full exercise rountine for a few months due to the fact that it sometimes acted as a trigger for attacks, so the taurine keeps my muscles flexable until I can resume my full work outs again.
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Batch
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Re: My D3 regiment so far
Reply #13 - Jan 10th, 2018 at 4:54pm
 
Ryan,

You're in what I call the "tuning phase" of taking this regimen were we vary the amounts of regimen supplements to find the right balance to keep us CH pain free.

Accordingly, you can double the Omega-3 fish oil... and add a good probiotic.  Too many CHers, myself included at times, treat the gut like it was made of cast iron...  Not so...  It contains colonies of bacteria (biota) most of which are friendly and essential to good health called the microbiome.  The microbiome can be wiped out with a course of antibiotics causing all kinds of health problems.

The roles of probiotics and the microbiome in maintaining healthy immune systems and overall good health were not topics of interest to medical science until 1999 when the first study using probiotics was registered in clinicaltrials.gov, "Use of Probiotic Bacteria in Prevention of Allergic Disease in Children 1999-2008".  There have been 948 studies registered in clinicaltrials.gov listing probiotics as the intervention in a wide array of medical conditions since then...  110 in 2017.  The Gut-Brain Axis has also become a hot topic in the last 10 years with respect to neurological conditions.

Researchers have found a direct two-way communications link between the gut and the brain via the Vagus nerve.  They've also found chemical links between the gut and brain where neuropeptides produced in the gut play a role in neurological conditions...  The vasoactive intestinal peptide (VIP) should ring a bell for CHers.  This neuropeptide plays a major role in the pain phase of cluster headache and migraine pathogenesis.

Bottom line... a happy gut is a healthy gut...

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jan 10th, 2018 at 4:55pm by Batch »  

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Re: My D3 regiment so far
Reply #14 - Jan 13th, 2018 at 9:32am
 
attacks are getting stronger every night, last night was the worst since i've been back in new orleans. i'm about to have another one shortly so i have to write this quickly.
not sure why this is happing since i'm following the protocol as you guys have suggested. its having no effect and i'm right back to square one. im also taking benadryl and have bumped it up to 75 mg every 4 hours. i'm still taking the 50,000 IU of D3, but it has no effect.
ok i gotta go, my attack is coming on full force now.
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Re: My D3 regiment so far
Reply #15 - Jan 13th, 2018 at 12:30pm
 
ok, now that the attack is outta the way, up to 2 hours strong now, i can finish my post. So i put myself back on prednisone because i just can't deal with these marathon 2 hour attacks anymore, after 6 months of this i'm exhausted. For some reason my medicaid got canceled and it will be another 10 days before it is corrected and reactived. When that happens I will get off the prednisone and try and get a perscription of oxygen. Hopefully this D3 regiment will actually start working by then too. I'm back on the 50,000IU and i doubled my fish oil from 1,000 to 2,000. This is all I can do for now. I also bumped up my benadryl to 75 mg every four hours. We'll see what happens.
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Re: My D3 regiment so far
Reply #16 - Jan 14th, 2018 at 5:21am
 
Ryan,

Sorry you're having such a rough time.  Let me know if the prednisone works...  If it does, inflammation is the culprit.  Don't forget to try taking the vitamin D3 sublingual by chewing the softgels and swirling the contents under the tongue without swallowing until the dissolve completely.

If you can swing it, start a probiotic.  Diet plays a role so no sugar of any kind and that includes diet soft drinks.

Have you tried vitamin C? 1000 mg every four hours...  And drink 2.5 liters of water or lemon water a day

Oxygen will help big time to shorten the duration of attacks.  If you can catch a hit early, you should be able to abort it in 7 minutes or less.

Take care and please keep us posted.

V/R, Batch
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Re: My D3 regiment so far
Reply #17 - Jan 14th, 2018 at 9:38am
 
should i keep taking the 50,000 IU of vitamin D or drop back down to 20,000? Yeah the predisone worked immediately, usually does. I'll start working on the probiotic diet. I'm still waiting on my food stamps but as soon as I get them I can expand my diet, being poor sucks when it comes to eating good food. Sugar really hasn't been a problem but I can try and cut it out. I'll keep you posted.
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Re: My D3 regiment so far
Reply #18 - Jan 15th, 2018 at 5:46pm
 
This is what I take every day.
D3 - 50,000
One men's multi-vitamin
K2 - 200 mcg
B Complex 50 mg
Fish Oil - 1,000 mg
Benadryl - 50 mg every 4 hours
Prednisone - 60 mg past 3 days, tomorrow start 50 mg for 3 days and then every 3 days after that I decrease the dosage by 10 mg until the pills are gone.
I also take a blood pressure pill everyday, along with 20 mg of Prozac and 100 mg of Trazodone every evening.
1,500 Taurine (500 mg 3x throughout the day)
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Re: My D3 regiment so far
Reply #19 - Jan 17th, 2018 at 3:30am
 
Hey Ryan,

For starters, howz the head?  Have the frequency, severity and duration of your CH dropped any while taking this aggressive regimen?

Regarding my comments on what you’re taking, I’ll tell you what I would do, in order and why.

1.      Drink 2.5 liters of water a day.  This helps flush excess calcium from the kidneys

2.      Have my PCP order labs for my serum 25(OH)D, calcium and PTH.  Taking 50,000 IU/day vitamin D3 is OK for 12 to 16 days. Taking a dose this high longer than that can push calcium homeostasis past its limits to maintain serum calcium within its normal reference range resulting in hypercalcemia (too much serum calcium).  I won’t know this without lab tests.  The alternatives are reduce the vitamin D3 dose and if I didn’t ,  I’d avoid all calcium supplements and calcium rich foods (all dairy products). 

3.      Make sure I was taking at least 400 mg/day magnesium.  Taking large doses of vitamin D3 > 10,000 IU/day consumes magnesium rapidly.  Without magnesium supplements, taking this much vitamin D3 will result in a calcium-magnesium imbalance causing muscle cramps and possibly an increase in CH frequency.  Magnesium, Omega-3 fish oil and 2.5 liters of water a day keep my blood pressure in the green… and I’m 73.  I also have a BP cuff and use it weekly.

4.      Increase the Omega-3 fish oil dose to 2000 mg/day.  Omega-3 is a potent anti-inflammatory agent that helps prevent CH.

5.      I am not a fan of psychoactive drugs so avoid taking antidepressant medications like Fluoxetine (Prozac) and Trazodone.  Their off-label use in treating primary headaches does far more harm than good.  They can even cause headaches.  Vitamin D3 and Omega-3 fatty acids are far more effective in treating anxiety and or depression without adverse side effects.

6.      Benadryl (Diphenhydramine HCL) is only a short-term treatment.  300 mg/day is the maximum total daily dose and two weeks is the max duration…  Obviously we shouldn’t drive if taking Benadryl as it will cause drowsiness.  If Benadryl (Diphenhydramine) doesn’t result in a drop in the frequency of CH after thee days, discontinue as excess histamine is not the problem.  If it does work, dietary changes are in order.

7.      Start a good probiotic and continue taking it until the bottle is empty.  Probiotics help repopulate colonies of bacteria and biota in the GI tract called the microbiome.  Most of these colonies are friendly and symbiotic… Some are not.  A good probiotic helps increase the colonies of friendly bacteria.

8.      Change my diet to avoid all sugars and limit fresh fruit intake to one serving a day.  Avoid high starch carbohydrates including grain and grain products including bread, pasta and all grain oils and margarine. Good oils include EVOO, avocado oil, butter and coconut oil. Eat Organic NON GMO fresh green and yellow veggies, wild caught fish (salmon, halibut, cod, anchovies), free range beef, lamb, pork, turkey, chicken and eggs.

9.      If I was still having problems controlling my CH, I’d increase my daily vitamin C intake from 2000 mg/day to 6,000 mg/day (1000 mg every 2 to 3 hours during the day and at bedtime.  Vitamin C is an effective antibacterial, antiviral and antifungal agent that doesn’t kill off the GI tract microbiome. I’d also start taking Turmeric (Curcumin) at 1000 mg/day as it is a great natural anti-inflammatory agent...

10. Not sure about the heart medication...

11.  The results of taking prednisone will be telling...  If you respond, the level of inflammation preventing vitamin D3 from controlling your CH is high...

Take care and please keep us posted.

V/R, Batch
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Re: My D3 regiment so far
Reply #20 - Jan 17th, 2018 at 11:33am
 
Batch,

I've been on Prednisone now for 5 days with no attacks. For me Prednisone always eliminates my attacks every time I'm on it. I wish I could take it every day for the rest of my life but we all know that isn't possible since it's a steroid.
Since I've been back on Prednisone I've dropped my intake of vitamin d back down to 20,000 from 50,000. I was doing the 50+ IU for 6 days and thought it might be a good idea to drop to 20,000 while I'm on Prednisone.
I will bump my fish oil to 2,000 and as soon as I have some money, probably the first weekend in February, I will purchase a probiotic and some vitamin c. I have no income since I can't work so money these days is hard to come by. I'll need to re-up my fish oil and a few other vitamins at the end of the month also. This stuff is not cheap.
I hear what your saying about the anti-psychotic meds but I suffer from PTSD and I'm in bad shape without them, perhaps some research can be done to find out if there are better meds to be on while suffering bouts of cluster attacks.
Everybody's body chemistry is different from one another. What works for one may not work for the other. I was on the D3 long before I was on Prozac and Trazodone and I was still having massive panic attacks, nightmares every night and relentless anxiety. Since I've been on these meds most of that has been under control. So, it's kind of a necessary evil at the moment.
I'm still waiting for my Medicaid to be reactivated, hopefully it will be fixed by the end of this week, but I'm not sure. As soon as it is I will make an appointment with my PCP and get those blood tests done to see where I'm at with the D3.
I have alot of doctors to see for various issues, one of them is a bulged disc in my back which causes horrible pain constantly shooting down my left leg. I'm basicly in pain everyday and all day. I refuse to take any kind of pain medication so I just suck it up until I can see my doctors. I can't see my headache specialist until June 7th but they said if somebody cancels they would call me right away to get me in earlier.
Two hernia's, lower back and naval. Cluster headaches and liver disease with PTSD thrown into the mix. So you can see I'm a mess but I own it because I believe there is a light at the end of this very dark tunnel.
Thanks again Batch, I will keep you posted.
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Re: My D3 regiment so far
Reply #21 - Jan 17th, 2018 at 10:23pm
 
Did some research tonight. I think the reason the D3 regiment isn't working is the fact that I have Hepatitis C. What a bummer.
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Re: My D3 regiment so far
Reply #22 - Jan 18th, 2018 at 11:19am
 
Ryan,

That prednisone stopped your CH with everything else you've got going on including hepatitis C, speaks volumes...  I wouldn't reduce the vitamin D3 dose just yet...

Check your email.

Take care,
V/R, Batch
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« Last Edit: Jan 18th, 2018 at 11:20am by Batch »  

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Re: My D3 regiment so far
Reply #23 - Jan 18th, 2018 at 2:32pm
 
Alright, I'll bump it back up to 50,000 IU.
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