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new to the board, but not the nightmare (Read 13150 times)

jendi

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Re: new to the board, but not the nightmare
Reply #25 - Mar 6^th, 2016 at 9:35am

Hi All,

After 20 year remission I find myself dealing with 4-6 attacks every night. I was diagnosed chronic back in 1995 and it seems I am heading in the same direction. Fortunately, this time around there are a few things that can help. Oxygen has been a lifesaver!

It also helps finding the right doctor--20 years ago I was told there is nothing I can do so I dealt with the daily pain of cluster headaches for 3 years--then they just stopped.

I have found some great information here, thanks for the site!

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Batch

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Re: new to the board, but not the nightmare
Reply #26 - Mar 6^th, 2016 at 8:56pm

Hey Jendi,

Welcome to CH.com, You've come to the right place. We know what you're going through and the good news is it doesn't need to be that way...

As you've already discovered, there's a lot of good information here that can really help.

Check your PM InBox... I've left you some additional information.

Take care and please keep us posted.

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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BobG

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Re: new to the board, but not the nightmare
Reply #27 - Mar 7^th, 2016 at 8:52am

helliknowpain wrote on Mar 5^th, 2016 at 8:11am:

I
On the funnier side - imagine having a seriously runny nose
and throw the sinus flow of a cluster on top of that...what a snotty mess haha Tongue

Tongue

I've often wondered why, when God first invented us, he gave us an organ to breath through, then filled it with boogers and runny snot, then turned it upside down and stuck it in the middle of our face right over our mouth. Yuck!

Stay stressed. Never relax. Never sleep. Ever.

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Michael63

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Re: new to the board, but not the nightmare
Reply #28 - Mar 10^th, 2016 at 1:46pm

Hi All,
As with all here, I seem to be a newbie. I am 63 years old and have suffered the pains for 34 years. Mine started with my doctor telling me I had sinusitis. Nothing he did for me took them away. It wasn't till my daughter was born in 1985 that a neurologist noticed me in the maternity department that he asked about my symptoms. I had the typical face and eyelid droop that he noticed. I saw him a week later and he diagnosed the chronic CH. Since that time, I have danced and iced and tried every med on the planet, but nothing seems to work. I was in a 2 year remission and just before Christmas 2015, the beast returned. I am currently taking 50mg of sumitriptan which does give me relief in 15 to 20 minutes. There are also days when the sumitriptan does no good. I have been reading about the D3 therapy and think that I will give it a try. My days are totally filled with fear and nights are wondering when or how bad they will be. I was experiencing mostly night time episodes, but this time I am having day time and night time episodes. I have been reading others experiences on the site and feel much better knowing that I wasn't the only one. I have never met someone who has CH. In 1991, I went to the Headache Clinic in Chelsea Michigan. The only thing they could find abnormal was a extra "blip" in my ekg, which I explained to a cardiologist upon my return home. I will follow everyone that I can here and give my experiences as I can. Thanks for having me.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: new to the board, but not the nightmare Reply #29 - Mar 10^th, 2016 at 2:00pm Michael, Welcome here. You've made a great decision to post. Now make another one, and start the D3 without delay. You will not regret it!!! Ask loads of questions. There's a wealth of experience here. Peter.
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Michael63 CH.com Junior Offline I Love CH.com! Posts: 45	Re: new to the board, but not the nightmare Reply #30 - Mar 10^th, 2016 at 2:21pm Hello Peter, Thanks for the welcome. I have a few questions regarding the D3 therapy. I was reading something that Batch had put out online and he gave a list of ingredients. Is it necessary to take the entire list or is just taking a portion a working option?
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: new to the board, but not the nightmare Reply #31 - Mar 10^th, 2016 at 2:36pm Michael, I have always taken all the cofactors recommended by Batch. The number of products you need has changed over time, so I don't know what list you are looking at. Here is the current recommendation:
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Mike NZ

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Re: new to the board, but not the nightmare
Reply #32 - Mar 11^th, 2016 at 2:14pm

Hi and welcome

Michael63 wrote on Mar 10^th, 2016 at 1:46pm:

I am currently taking 50mg of sumitriptan which does give me relief in 15 to 20 minutes. There are also days when the sumitriptan does no good.

This sounds like you're using the tablet form of sumatriptan which takes a long time to take effect. What we've found to work much better is the injection and nasal spray versions. I'd certainly ask about these when you see your doctor as these can work in about 5 minutes which avoids a whole lot of pain.

I'd also ask about using oxygen which can similarly abort a CH in 5 or so minutes. Read up about how we use it at - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Michael63

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Re: new to the board, but not the nightmare
Reply #33 - Mar 11^th, 2016 at 3:14pm

Thanks for the welcome MikeNZ, I have tried the O2 with only marginal relief. I used the injections years ago, early 90s, and they worked very well. They scared me however. I always felt as though I was "floating" soon after the injection. The tablets work slower, but they seem to give me longer relief than the injections did. I will keep them in mind and talk to my doctor on my next appointment in early April. I was told that some people used both the injectable and the tablet in unison. Not sure of how that works.

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Michael63 CH.com Junior Offline I Love CH.com! Posts: 45	Re: new to the board, but not the nightmare Reply #34 - Mar 11^th, 2016 at 3:25pm Peter510, Do you still use the dosages that were listed in Batch's list? If not, what do you use? I am purchasing everything tonight and plan to start as soon as I can. Do you take them all at once or break them out over the course of a day?
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thierry

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Re: new to the board, but not the nightmare
Reply #35 - Mar 11^th, 2016 at 3:29pm

Hi Michael and welcome,
Yes use the Vit D3 and other supplements as per Batch's recommendations. He says is best to take it all together with the most fattening meal of the day. Also for the 1st month, 1 day a week take an extra 50000iu D3 on top of the 10000iu, this will bring up your D3 levels quicker.
D3 regimen works for me too, 3 years Pain free now

Hopefully we'll soon read that you're PF too, the regimen works for nearly 80% of people that take it.
All the best

« Last Edit: Mar 11^th, 2016 at 3:48pm by thierry »

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Peter510

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Re: new to the board, but not the nightmare
Reply #36 - Mar 11^th, 2016 at 3:59pm

Michael,

Use Batch's dosage for the Vit K, D3, Omega 3 and Magnesium. One Multimature tab per day covers everything else.

Also, follow Thiery's advice regarding load dosing D3 in the first month.

The objective is to get your D3 reading up to 200nmol/L as soon as possible.

It would also be wise to get you bloods done to establish your starting point.

Peter.

You don't stop laughing because you grow old....You grow old because you stop laughing.

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Mike NZ

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Re: new to the board, but not the nightmare
Reply #37 - Mar 11^th, 2016 at 5:27pm

Michael63 wrote on Mar 11^th, 2016 at 3:14pm:

I have tried the O2 with only marginal relief.

Did you use it at a high flow rate, at least 15lpm or higher and with a non-rebreather mask?

Michael63 wrote on Mar 11^th, 2016 at 3:14pm:

I was told that some people used both the injectable and the tablet in unison. Not sure of how that works.

You shouldn't be using both at the same time, just one or the other.

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Michael63

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Re: new to the board, but not the nightmare
Reply #38 - Mar 14^th, 2016 at 11:24am

Good Morning All,

Well I started the D3 therapy on Saturday. I had one of the most miserable nights imaginable. I slept maybe 2 hours all night. Sunday morning, nothing I did would relieve the pains. After 2 hours of pacing and icing and O2, relief found me. I took the D3 and something amazing happened to me. It was as if someone had lifted something off my shoulders. The day was spent without incident. Last night had two very minor pain attacks lasting a total of 1.5 hours. I am not sure if this is the norm for people to start getting relief this soon after starting the therapy? If it is, I am all in.

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thierry

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Re: new to the board, but not the nightmare
Reply #39 - Mar 16^th, 2016 at 1:34pm

Hi Michael, Hearing about a sufferer being pain free is always great news. becoming pain free this quickly is not something that happens a lot, but it does happen
As i said above, once a week take 50000iu D3 on top of the 10000. do that sooner rather than later and you could become nearly or completely pain free sooner. Do this for a month at least.
all the best
keep us informed of your progress.

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helliknowpain

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Re: new to the board, but not the nightmare
Reply #40 - Mar 17^th, 2016 at 6:45am

Batch wrote on Mar 5^th, 2016 at 9:32am:

helliknowpain,

Sorry the beast came back to haunt you... A spring cold and possibly an allergic reaction are all it takes to bring the CH beast out of hiding... Infections and allergic reactions trigger inflammation and an immune system response that suck up available serum vitamin D3 and 25(OH)D, the first metabolite rapidly. This frequently leaves too little left to prevent CH.

Accordingly, how much vitamin D3 were you taking when this bout started? Were you taking all the other co-factors?

Although the frequency of my colds have dropped significantly since I started the anti-inflammatory regimen in 2010, they still happen, but are usually short lived like 24 hours with a runny nose then nothing...

When colds do happen, I usually take a 50,000 IU loading dose of vitamin D3 then double my maintenance dose for a week. On top of that, I start taking Vitamin C, like a 1000 mg tablet every 2 hours during the day and I also start popping zinc lozenges.

Given it's too early for spring pollen in your neck of the woods, any allergens could be home grown. Mold growing somewhere in the house could be a possible culprit and it doesn't take much like a little growing in drip pan under the refrigerator.

If you do suspect an allergy, Benadryl (Diphenhydramine) can help. Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain. Second- and third-generation antihistamines cannot do this so are not as effective for CHers.

What other medications has your doctor prescribed? If you've been given an antibiotic, you'll need to start taking a good probiotic. Antibiotics kill off friendly colonies of bacteria living in your GI tract called the microbiome and that can cause big problems.

The microbiome makes up most of our immune system so it helps to keep it happy and healthy...

Take care and please keep us posted.

V/R, Batch

I've stuck with the regimen, but the CH's broke through.
Interestingly, after 3 days of antibiotics the severity dropped to 2 or 3 kip, frequency from 2 or 3 daily to 1 and the duration reduced from 15 to 30 minutes to 5 minutes start to finish. After 5/6 days no pain.
I think this adds to the speculation that infection reduces the effectiveness of the regimen.

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helliknowpain

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Re: new to the board, but not the nightmare
Reply #41 - Mar 17^th, 2016 at 6:47am

Batch wrote on Mar 5^th, 2016 at 9:32am:

helliknowpain,

Sorry the beast came back to haunt you... A spring cold and possibly an allergic reaction are all it takes to bring the CH beast out of hiding... Infections and allergic reactions trigger inflammation and an immune system response that suck up available serum vitamin D3 and 25(OH)D, the first metabolite rapidly. This frequently leaves too little left to prevent CH.

Accordingly, how much vitamin D3 were you taking when this bout started? Were you taking all the other co-factors?

Although the frequency of my colds have dropped significantly since I started the anti-inflammatory regimen in 2010, they still happen, but are usually short lived like 24 hours with a runny nose then nothing...

When colds do happen, I usually take a 50,000 IU loading dose of vitamin D3 then double my maintenance dose for a week. On top of that, I start taking Vitamin C, like a 1000 mg tablet every 2 hours during the day and I also start popping zinc lozenges.

Given it's too early for spring pollen in your neck of the woods, any allergens could be home grown. Mold growing somewhere in the house could be a possible culprit and it doesn't take much like a little growing in drip pan under the refrigerator.

If you do suspect an allergy, Benadryl (Diphenhydramine) can help. Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain. Second- and third-generation antihistamines cannot do this so are not as effective for CHers.

What other medications has your doctor prescribed? If you've been given an antibiotic, you'll need to start taking a good probiotic. Antibiotics kill off friendly colonies of bacteria living in your GI tract called the microbiome and that can cause big problems.

The microbiome makes up most of our immune system so it helps to keep it happy and healthy...

Take care and please keep us posted.

V/R, Batch

I've stuck with the regimen, but the CH's broke through.
Interestingly, after 3 days of antibiotics the severity dropped to 2 or 3 kip, frequency from 2 or 3 daily to 1 and the duration reduced from 15 to 30 minutes to 5 minutes start to finish. After 5/6 days no pain.
I think this adds to the speculation that infection reduces the effectiveness of the regimen.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: new to the board, but not the nightmare Reply #42 - Mar 17^th, 2016 at 7:28am Yep, without a doubt. I experienced exactly the same the week before last, with a throat infection. Peter.
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Batch

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Re: new to the board, but not the nightmare
Reply #43 - Mar 18^th, 2016 at 5:27pm

Helliknowpain,

It isn't so much a loss of effectiveness of this regimen due to an infection or allergy, but rather our immune systems create an increased demand for available serum vitamin D3 and 25(OH)D in response to the infection. Accordingly what we have when an infection occurs is a classic case of supply and demand imbalance where the immune system creates a demand for vitamin D3 and 25(OH)D that exceeds the available supply...

As our immune systems take priority on the consumption of vitamin D3 and 25(OH)D... as well they should... when an infection presents, our immune systems will consume available vitamin D3 and 25(OH)D at high rates leaving insufficient concentrations of either remaining to prevent CH.

The simple solution if a cold or some other infection presents itself is to start loading vitamin D3 asap. 50,000 IU/day for a week is not unreasonable. I also suggest taking a 1000 mg vitamin C tablet every two hours while awake for as many days as the infection symptoms are present.

Moreover, if prescribed an antibiotic for the infection, it's best to start taking a good probiotic at the same time a couple hours after taking the antibiotic and continue taking it until the bottle is empty.

The rationale for this is simple... Antibiotics are indiscriminate so kill off the friendly colonies of biota living in our GI tract called the microbiome... That means these colonies need to be reseeded and replaced. A happy gut is a healthy gut... and, as most of our immune system resides around the gut... keeping it happy is prudent.

There's an excellent video at the following link that illustrates how our immune systems work extracellular and within the cells.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Hope this rings a bell...

Take care and please keep us posted.

V/R, Batch

« Last Edit: Mar 20^th, 2016 at 8:33pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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helliknowpain

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Re: new to the board, but not the nightmare
Reply #44 - May 30^th, 2016 at 1:21pm

Never had a cycle like this. Basically my fall cycle never ended. Still on the d3 and stuff and as long as I stay away from alcohol I'm okay - so I can't complain. The tight feeling in my neck never really leaves, so I don't know...

Went from the life of the party to not wanting to go. The fear of a attack is keeping me grounded, boring but grounded.

Just thought I'd chime in.

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