Looking for help

[bearcat2011]

I have been suffering from CH off and on for the past 7 years. I am currently in a phase where I get hit every single night between 7-9 pm, and again at some point during the night(typically around 3 am). They have gotten progressively worse, to the point where I’ll have a slight headache probably 85% of the day. I just started the D3 regimen today, but am looking for anything at this point. I’m becoming desperate, as I have felt my entire mood change throughout the day. I struggle to enjoy time with my kids and wife, because the only thing I think about is when my next CH will hit. Luckily I have been blessed with a wife that is sympathetic and understanding, but it is putting unnecessary stress on her everyday life as well. This is the first time I’ve come across this site, and am hopeful I can find some solutions in this online community. I am absolutely open to any and all suggestions, and if you have any particular questions for me, don’t hesitate to ask.

 

Thanks

[CHfather]

bearcat', welcome and, as we say, very sorry you have to be here.

Can you tell us what you're currently doing for your CH, and what you've tried in the past?  Be as specific as you can (for example, not just "tried verapamil and it didn't help," but how much verapamil, if you remember).  The most useless information is "tried everything."

Oxygen is your #1 priority, if you don't have it.

Are you using the nonpharmaceutical things that can sometimes quickly abort an attack, or at least make it less bad?  An energy shot (such as 5-Hour Energy) drunk down quickly at the first sign of an attack helps many/most.  For many/most, it doesn't keep them awake if they take it during the night.  Something cold to create "brain freeze" can help, too, such as drinking ice water through a straw aimed at the roof of your mouth on the CH side, or even holding a lump of frozen juice concentrate against the roof of your mouth with your tongue.  Melatonin at night helps some/many. You could start at about 9 mg and work up to a satisfactory dose.  Since many wind up in the 20-plus mg level, you could start higher than 9mg, but it's hard to know how groggy you might feel in the morning.  Benadryl multiple times during the day is also suggested.  You might be doing that as part of the D3 regimen -- I think Batch recommends something like 25mg three times a day and 50 mg at bedtime.  Of course, don't take both Benadryl and melatonin at bedtime.  If you're taking verapamil, be sure that you take that at least 8 hours apart from when you take the calcium part of the D3 regimen. 

[urs Brasil]

bearcat2011, welcome to the club 

Like CHFather already said, first you/we have to check your basic fight with the beast in order to give some release to your pain. Following CHFathers tips & suggestions should kick you out of the most severe situations. Important also do you have any help from a Neuro or other medical staff? If so what did they do for you?

One important point I always recommend is: Read and read again as much as you can from this side as you will get valuable information not jet know to you. As you already are on the D3 regime you may already have done a lot of reading...
Never the less we see people coming in and missing some of the first and eventually important stuff like Verapamil&O2 usage and dosing like CHFather already mentioned.

Further more you may already have seen a lot of Information on Supporters like your helping wife. So you should explain your basics more in detail AND read as much you can from this valuable site. Most likely you will find some more relief and even pain free time doing so.

 

 

[Dallas Denny]

G'afternoon Bearcat

I'll add my welcome to the community and sorry you had the need to join the club that nobody wants to belong to!!

As CHf has already stated, expand a bit on what you've tried in the past and/or what you're using currently so well have a better idea on what to suggest....to reiterate his comments, your primary objective should be O2 and the D3 regimen!!

I'm going to move your thread to the "General" section of the forum where it will get more attention as they tend to get buried and missed here in the files section!!

Dallas Denny 

 

[xxx]

Hey Bearcat,

I'll echo the welcome to Clusterbusters and add, welcome to the anti-inflammatory regimen.  You're off to a good start.  Be sure to start the 12-Day vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for 12 days.  This is the fastest way to elevate your serum 25(OH)D into the therapeutic range of 80 to 100 ng/mL which is the therapeutic range for episodic and chronic CHers to experience a favorable response to this regimen. 

I realize that 600,000 IU sounds like a lot of vitamin D3 for people new to vitamin D3 therapy.  That said, there are several RCTs where a single oral dose of 600,000 IU, (1.5 mg) of vitamin D3 was given with no adverse reactions and all study participants experienced an average gain in 25(OH)D serum concentration of 60 ng/mL above their starting serum concentration in 3 days.  If you've a copy of the latest treatment protocol for this regimen, you should have a copy of the graphic below illustrating the favorable response times by day after starting this regimen.  It will give you an idea when to expect this regimen will start working to prevent your CH.

As you can see, the majority of CHers starting this regimen respond in the first week after starting this regimen and better than 75% respond within the first two weeks. 

At this point be sure to take all the supplements listed in the protocol and drink at least 2.5 liters of water a day.  Having developed this regimen in October of 2010, I usually suggest that all the supplements be taken with the largest meal of the day to ensure maximum vitamin D3 absorption.  However, as it takes roughly six hours for oral vitamin D3 to reach a maximum serum concentration or (T_max ), It may be beneficial to take the vitamin D3 around 11 AM to noon in order to ensure the vitamin D3 serum concentration is highest and had time to reach target neurons within the trigeminal ganglia in sufficient concentration to have a therapeutic effect during the 7 to 9 PM time frame of your first CH hit of the evening.

Over the last year, several CHers who didn't respond to this regimen during the first week found that taking 25 mg of Benadryl (Diphenhydramine HCL) four times a day and 50 mg at bedtime for a week to ten days, experienced a favorable response with a significant reduction in the frequency of their CH from an average of 3 CH per 24 hours down to 3 or 4 CH/week or a complete cessation of CH symptoms.

The rationale for taking this first-generation antihistamine centers on its capacity to cross the blood brain barrier to block histamine H1 receptors in neurons within the trigeminal ganglia and the fact that we're constantly exposed to allergens.  Although most people say they don't have allergies, they can be subclinical with no outward or obvious symptoms, but they're still there, pumping out enough histamine for CHers to react with onerous CH.  Accordingly, if you've not experienced a significant reduction in the frequency, severity or duration of your CH within 4 to 5 days after starting this regimen, it may be helpful to start the week to 10-day course of Benadryl.

Again, you're off to a good start in gaining control over your CH.  Stick with this regimen and I'm confident you'll be happy you did.

Take care and please keep us posted.

V/R, Batch

 

 

 

[Clusterfukked]

Hello fellas, any recs on breaking up the D3 regimen ? I generally feel like I need to vomit for hours after I take all of these pills. I’ve tried morning, night, before meal, after meal. It’s just a lot. I guess better than the alternative but is there any reason I should take some early and some late etc ? 

[spiny]

The only thing with the D3 is not to take it at the same time as you do Verap. That needs to separated by several hours. That is the only restriction that I am aware of for the regimen.

Personally, I take all of mine at night. Just works for me. Vitamins and then bedtime.

You could take some in the am and some at night to see if that helps.

[xxx]

Hey CF,

Try taking this regimen with the evening meal.  Start with just the vitamin D3 and magnesium the first day then add the rest one day at a time until you find the culprit making you hurle...  Be sure to drink at least 2.5 liters of water a day...

Take care,

V/R, Batch

[Justintim3]

I experience my Cluster attacks around the same time as well. Between 7-9 pm and walking with one around 3am. I work hard all day and it’s when i come home and finally get a chance to relax that the attacks start. I have found lots of coffee sometimes helps me through the 7-9pm attack but not all the time. I only do this when I’m out of O2.

[Michelle01]

I've been suffering cluster headaches for 10+ years, usually, November/December cycle begins and ends in the Spring.  I had tried EVERYTHING to deal with them & finally my doctor said "Let's try supplemental oxygen for this!"  He prescribed me a tank & when I feel a cluster headache starting up, I turn the setting on the tank to 8 & breath the oxygen through a facemask for 5-10 minutes and the cluster is gone!  It never gets to the point it is unbearable because the oxygen knocks it out before it gets to that point.  Why did it take over 10 years to get to this point and why don't all doctors do this?  My health insurance was paying almost $200 a month for the supplemental oxygen with a $30 copay to me.  I would have paid ANYTHING for this years ago!  A local oxygen retailer signed me up as a private pay for a total of $10 a month for the rental and $5 per tank.  (Now we know why insurance premiums are so high too!!)  Just thought I'd throw this out there... maybe it could change your life too! 

[jon019]

Hi Michelle...welcome aboard!

It's almost criminal that many in the medical profession do not know ANYTHING about O2 for CH. It's IN THE LIT...has been  accepted as a PRIMARY treatment in countless neurology journals and papers and studies. I first learned about in 1985 (from National Headache Foundation) and tears of joy does not even come close to describing the feeling, relief and "I got my life back" reality. We LOVE to hear stories like yours!!!

Re the O2 supplier....THAT is a screaming deal...give them a hug and a shout out from clusterville...I paid $14 a tank 20 years ago and had to buy my own rig. You might consider sharing the name and general area so other clusterheads can climb on that train. Insurance is all over the board on coverage...I've had at least 7 providers...some didn't cover, some did..AFTER a fight I got good at. The cost to them was ridiculous and my copay higher than yours ($13/tank...woulda paid anything!). I used to stare at the billing summary and feel bad for the insurance company....but THAT passed quickly....the bastards.  The ones that get hurt were/are the folks with no coverage...and no compassionate supplier....and is what I worry about happening even more in the future health care mess coming..................

Best

Jon

[gail CRUTCHER]

getting a headache trying it learn to navigate this site!!! i find no help with "how to" and i'm very sure it's there, but I'm too green. How to get to theory and Implementation is well hidden~~

[FunTimes]

If you go to the top of this page and click on the word brows it will open a page that lists different pages people post questions on. if you click on the words Theory and Implementation it will open up that page witch will have a bunch of different headers that represent others posts. you can scroll down and click on anything that will interest you or  you can click on the word create on the top right hand side of that page and start your own thread. If you create your own thread by clicking the create button it will also be listed among the others you saw after clicking theory and implementation and others will then be able to communicate to you within that posting. The private part is like CHFather has told you, it is private to members of this site and people who do not log into the site can and will not be able to read, see or answer anything.   

I hope this helps you, the more you click on things the better you will get the hang of it.