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Vitamin d for cluster headaches


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Ok The oxygen supplier that brought us the concentrator came and picked it up and brought us tanks. 3 small tanks and one large emergency tank. When the small tanks get empty which is app 3 headaches each you hook it up to a machine to refill them. He called it a concentrator that takes the oxygen out of the room and then transfers it to the small tanks. Does this sound like what I need? He also told us that the highest this supplier as for flow rates goes is 15. I'm confused.The doctors script said 15/25 for 15 minutes.

I've been on the Benadryl for 2 weeks. I'm taking 15,000 D3 daily for appr 8 days now. Headaches are random at 5 a day. No change yet

Since the mag I didn't have no more neck cramps.

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I'm a little confused (again!) by this . . . but others might not be.  You got a large cylinder and a concentrator, or he called the large tank a "concentrator" and said to fill the smaller ones from it?  If you clarify this, I/we can maybe comment better.  I'd say that typically people use their large cylinders for attacks and the small ones as backups -- or they use the small ones for portability; in the car, etc.

Yes, often suppliers don't stock regs higher than 15 lpm.  You can buy a higher-flow reg at amazon, eBay, and many other places for about $30.  Whether you want/need that would depend first on whether O2 seems to be helping you at all, and then on whether you have to wait for the bag on your mask to fill when you're using an effective breathing strategy at 15.  If you have to wait for the bag to fill, 25 lpm will fill it faster and allow you to keep breathing O2 without interruptions.

Are you doing the whole D3 regimen -- all the supplements?  That's important.  I would say that if the Benadryl has had no effect for three weeks, there's not much point in continuing that.

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Lynn,

I agree with CHfather's suggestion to discontinue the Benadryl.  I would also switch to the 12-Day vitamin D3 loading schedule at 50,000 IU/day.  You've roughly 9 days remaining given the total amount of vitamin D3 you've already taken.  Switching the vitamin D3 loading dose to 50,000 IU/day will build serum 25(OH)D much faster and that should result in a significant decrease in the frequency and severity of your CH.  How long is it taking in minutes to abort your CH with oxygen therapy?  Are you using the oxygen therapy breathing method I suggested by hyperventilating with room air for 30 seconds then inhaling a lungful of oxygen and holding it for 30 seconds, then repeating this sequence until the CH pain is gone?

Take care and please keep us posted.

V/R, Batch

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I've been taking Benadryl for about 3 weeks now, but it don't seem to be helping the stomach. The doctor said you can't treat the stomach by itself because all of it is part of the migraine. So if I ca get rid of the headaches I will no longer be nauseous.  Last 2 days have been better. Only 3 sneezes and headaches. Hopefully that's a good sign, but I've had some good days before. When this all started I had a 10 day remission period and then it started all over again.

The sneezes and headache seem to be worse after 4 in the afternoon until bedtime. 

Do I stay on 15,000 D3 all the time or can I use less later? 

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Lynn,

Have you downloaded the anti-inflammatory regimen treatment protocol?  I'd try stopping the Benadryl for now as it doesn't appear to have an effect on the frequency of your CH.  I'd also increase the vitamin D3 loading dose to 50,000 IU/day.  You've roughly 8 days remaining on the 12-Day vitamin D3 loading schedule taking 50,000 IU/day for the next 8 days.  When the 8 days are up, you can drop the vitamin D3 dose to an initial maintenance dose of 10,000 IU/day. 

The gut plays a role in vitamin D3 so I'd start a course of probiotic and take as directed on the label until the bottle is empty.  Taking vitamin C can also help.  I take at least 2 X 1,000 mg tablets of vitamin C a day.  You can safely take a 1000 mg tablet of vitamin C every 4 hours throughout the day.

Take care and please keep us posted.

V/R, Batch

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I've been taking Benadryl for the last 10 days. Nothing changed.

I'm taking 15,000 D3 daily along with the other vitamins, for about 10 days now.

I usually wake up with  nausea & sneeze as soon as I open my eyes, then the headache. Around 12:00 another bout of nausea and then the sneeze and headache, Around 4:00 another then 7:00 and 9 another. Usually 5 daily and worse in the evening. 

The last 2 days I've only had 3 so maybe I'm making a turn around, but I have good days and bad before.

I've only ever seen one other person that has these same symptoms. When I looked online at nauseous sneeze forum there was a girl on there that ask if any of those people had severe migraines with the nauseous sneeze.  Must be quite rare. 

They say to use the oxygen as soon as you feel like you are going to have a headache. I'm not sure if that means when I get nauseous, but that can be an hour before the sneeze, unless I use the pepper to hurry it along, or do I wait till I sneeze and then use it?

 

 

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Hey Lynn,

I'd bump the vitamin D3 dose to 50,000 IU/day for another week then drop back to an initial maintenance dose of 10,000 IU/day.  Make sure you're taking the Omega-3 fish oil and all the vitamin D3 cofactors: 400 mg/day magnesium, 10 mg/day zinc, 1 to 3 mg/day boron and 100 mcg vitamin K2.  Magnesium is most important as the enzymatic processes that metabolize vitamin D3 to its genetically active metabolite consume magnesium at a high rate.

As far as when to start oxygen therapy, any indication of an approaching CH is time to start O2.

Make sure you're drinking 2.5 liters of water a day.  That may help the sneezing problem...

The nausea is likely due to Substance P (SP), a potent vasodilator and pain stimulant associated with the pain phase of CH.

Take care and please keep us posted.

V/R, Batch

 

Edited by Batch
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In answer to CH Father.

They brought 3 med size tanks, and 1 larger tank. Then they brought a concentrator along to fill the tanks when those get empty. So I don't have to go anywhere to fill them . I can do it at home.

The larger tank is for an emergency. I have to keep it fill at all times in case we lose electric, and wouldn't be able to refill. I can also take it along in the car.

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I also forgot to mention, the doctor gave Prometh  25mg for my nausea. Now instead of being nauseous for an hour or so before the sneeze, it's only seconds.

Two improvements : The Magnesium took away the Charlie horses in my neck which is such a relief. And now the nausea is down to seconds instead of hours. but now I sneeze without warning and I get hit hard. I mentioned before, the sneeze is not just a normal sneeze, it sounds like I just blew my head off. It's so hard it scares the dog and she starts barking.  I do sneeze normal some times, but I don't get a headache from a normal sneeze. Just weird!

 

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Hey Lynn,

Good on you for upping the vitamin D3 dose. I'd stay at 50,000 IU/day for another four days then drop back to 15,000 IU/day and see what happens.  Pick up some saline nose spray and irrigate both nostrils with several sprays in each side.  This might help reduce the sneezing a bit...  Take care and please keep us posted.  V/R, Batch

Edited by Batch
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9 minutes ago, lynn327 said:

So my question is, will the oxygen work after the headache already started?

That is when oxygen works, after the attack has started -- it is for aborting attacks, not preventing them.  However, I gather that your attacks are full force as soon as they start, whereas for most people CH attacks ramp up, and so they can be "caught" with O2 before they get too bad.  Of course, you should try it, and see if it works.

I would not encourage accepting a concentrator for refilling tanks, since a concentrator produces O2 that still has some room air mixed in. The O2 supplier should bring you new full tanks as you use up your existing ones.  I am also puzzled by the sizes of your tanks, since you say you can take the "large" one along with you in the car. A truly large O2 tank is quite heavy and unwieldy, and not something one just tosses into the car.  How tall are your small and large tanks?  A typical large tank is at least 3 feet tall.

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 The 3 small tanks are 30"s tall  and the larger one is 28"s tall but a lot bigger around.

 I also have another question. After I sneeze and Bam a hit, within seconds I get relief ( I call it a break) that last 10 to 15 minutes. Then bam it hits again.

Any body experience this?

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They brought the concentrator to fill the tanks, because as often as he have to use it, they would have to come out every other day.

I'm so tired of fighting with them to get  what I need. I thought they would bring  bigger tanks, and then they would bring more as I use it. But they won't do that.

 The bigger tank has a different regulator on it.

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I'm very sorry for that ongoing battle, lynn'.  If I'm surmising right on your tank sizes, that larger tank holds almost three times as much O2 as one of the smaller ones.  Just about two hours' worth at 15 lpm.  To the extent that you want to conserve your pure O2 and not use the concentrator-generated O2, you could try Batch's "redneck" method, which uses far less O2.  It's described here (consists of hyperventilating with room air; then sucking down some O2 from a tank; then back to room air).  But I also might be exaggerating the reduced effectiveness of concentrator O2.  

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  • 1 month later...

 I've been taking Verapamil SR 120 mg once daily for 4 weeks and hasn't helped at all. What dosage do you all take of this drug? I have an app today with the Neurologist. Should I ask him to up the dosage?

Oxygen still making me light headed and dizzy and don't do anything for the headache.

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