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ClusterBusters
Jimmy Martinez

Hoping for help and relief

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Hey Jimmy!

That knot on your neck is actually very common. We often refer to it as the 'Cluster Knot'. I have had a really great masseuse work on mine to no avail. Was not going away. Neck pain became a common precursor to a hit for me. I finally started sleeping on the edge of my pillow to prevent aggravating it. When that cycle was over, it vanished as well. But, I still start out my night on the edge of the pillow. Old remedies die hard!!! 

MSG and alcohol are both very well known triggers. Falling barometric pressure sucks too. Paint fumes and perfume affect some CHer's too. You will find your triggers as you go, trust me. I have had about three sips of a beer send me into bad places right quick! Like look at the bottle and think " Not possible!' Ohhhh yes it is.

Like Jeebs, mine were 20 minute guys when they started many years ago. They have settled into a 2.25 hour rhythm for the last several years, so I guess they plan to stay in that range if untreated.

Caffeine is a major go to treatment for most of us. As an Energy Drink or Shot or even just coffee. Taken at the very beginning of a hit any will really help mitigate the attack. I finally got so sick of all of them, I bought caffeine capsules to keep with me. I can just open and take the powder with a chaser of water. For a while, I carried just the powder in a small container at all times. Then it dawned on me that the Peace Officers might question a white powder in my purse or pocket! Ergo, the caps.

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Thank you CHfather. I am going to put your daughter in my prayers ever day. She will beat this, especially with you fighting with her. I have a 7 year old daughter myself. I'm so glad it's me with the headaches instead of her or my wife or anyone else in my family. I wouldn't wish this on my worst enemy. I'll follow Batch's recommendations to the T. Thank you for the link.

I'm reading things about cayenne pepper in the nostril being helpful. I'd put a cobra in my nose if it thought it would work.

Take care

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I'm bad with computer so it there is a "private message" option on this site, please let me know. Otherwise, thank you Spiny. I get the headaches usually at 1 or 2 in the morning so the caffeine would keep me up all night. But good to know for those rarer day time attacks. So sorry to hear you have been going through this. I hope they go away for you forever or for at least decades. I never had these headaches until about 5 years ago and they seem to come around for about a month every 18 months or so.

I've never had them in a warm summer before. Only in the spring or fall. Therefore the "change in season" theory doesn't seem likely to me. I'm guessing this is a stress or an overactive mind or possibly some sort of muscle or tendon clenched or out of whack. 

I'm praying for my life literally.

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28 minutes ago, Jimmy Martinez said:

I'm reading things about cayenne pepper in the nostril being helpful. I'd put a cobra in my nose if it thought it would work.

capsaicin is the ingredient that is used in this nasal thing.  you can buy capsaicin sprays and creams at a pharmacy.  be sure you get the nasal spray or a cream that's meant for the nose, not the body -- i think the topical ones are stronger, and not meant to go in your nose.  warning: while this helps some people, others are quite miserable with having a burning hot nose in addition to a CH attack.

24 minutes ago, Jimmy Martinez said:

I'm bad with computer so it there is a "private message" option on this site, please let me know.

If you click on the screen name of the person you want to send a message to, you'll get a screen that has "send message" as one of the options.  or, at the top right of the page there's a thing that looks like the back of an envelope.  if you click on that, it opens the private message process.

Would you mind listing what you are doing now for your CH?  I get that you're going to do the D3 according to Batch's instructions, so you don't need to list that, but otherwise, all medications you're taking with amounts, and any supplements.  Do try spiny's suggestion of the energy shot or drink at the very first sign of an attack.  5-Hour Energy is a good choice: even though it's smaller than the energy drinks like RedBull, it actually has more caffeine and taurine.

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Jimmy

 

i dont want to sound like a douche bag here but

 

stsrt on the magic

it works you ll get relief

stop waisting time cos eventually when nothing else works you ll be on the magic

get on it and enjoy life 

 

CAPICHE

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Jimmy, I believe Twisted-M makes a valid point, in that those of us who've spent years on end observing, discussing and experimenting with CH treatments have seen certain ones have proven to be most effective and work for an impressive percentage of headbangers, and the magic, AKA "psilocybin busting", T-M speaks of is known to be a powerful preventive, the most effective preventive for plenty of us.

I'll personally vouch for it's effectiveness, as could thousands of others at this point I believe.

With you right on the verge of a cycle coming to an end (I'm hoping!), I'm not sure whether you could get set up with it before the CH is gone, but I think it's something to keep high on the radar in general, while also keeping in mind the contra-indications regarding family history of schizophrenia, etc.

Now RC (Rivea Corymbosa) seeds, a psychoactively milder busting substance, are legal to quickly purchase online and to possess, but not ingest, and some have had success with them.

 

 

 

 

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Dear Friends, just wanted to update you on things with me. Believe me, I am thinking about all of you every day. Especially those who are struggling. I wanted to see if anyone has had any any success or somehow broken through to become consistently pain-free? I'm not ready to hit the shrooms but I won't rule it out.

Here's what i have done just recently:

* Doctor just put me on Verapamil. 80mg tablets 3 times a day. I haven't started yet but will any day now (insurance reasons).

* Trying to get dissolvable Maxalt but fighting with insurance company to get more than 9 in a 30 day period. 

* Been gluten free now for about 4 days,. Also no sugar or dairy. Many are telling me that this could be a game changer. My doctor thinks it won't make a difference.

* Trying to conserve the medication I have. was using Frovatriptan as a preventative but only worked 50% of the time. When i get an attack, I have had some Zomeg a friend of mind gave me. 

* Lately I have been getting more daytime attacks which is odd because I typically get the attacks 2 hours after I fall asleep.

* Oxygen working a little better now that I have a higher flow regulator (max 15 LPM). If I catch an attack early I can knock it out, if caught late, the oxygen does;t work.

* Have tried migraine excedrin a few times and it actually has worked. 

* I have also stopped drinking caffeine. 

* A friend of mine who gets migraines is telling me about Hemp Oil (CBD) which she says helps. 

* I've reached out to "Batch" to get more info on this vitamin D3 regimen which I am not taking correctly at this time according to CHfather. I will still try this regimen as I hear it has great success.

* I've tried taking Benadryl at night and Melatonin/Magnesium but can't say it's helped much or that I have noticed any difference.

I might be doing too many things and confusing myself but I feel like I have to try multiple things to get some impactful results.

If anyone has had impactful success with anything, please share it with me. I have heard that "busting" works but I'm nervous about that.

Thank you and here's to your health and success!

Jimmy- 

 

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2 hours ago, Jimmy Martinez said:

Dear Friends, just wanted to update you on things with me. Believe me, I am thinking about all of you every day. Especially those who are struggling. I wanted to see if anyone has had any any success or somehow broken through to become consistently pain-free? I'm not ready to hit the shrooms but I won't rule it out.  Remember that there are busting options other than shrooms, easily put into practice, that have no psychedelic effects (seeds).

Here's what i have done just recently:

* Doctor just put me on Verapamil. 80mg tablets 3 times a day. I haven't started yet but will any day now (insurance reasons).   It is strongly recommended that you get your cardio system checked regularly when you are starting verapamil, and each time the dose is increased. As you may know, some people don't get really helped by verap until they're in the 960mg/day range.  Also, it is considered that "regular" verap, not the timed-release kind, is better for CH.

* Trying to get dissolvable Maxalt but fighting with insurance company to get more than 9 in a 30 day period. 

* Been gluten free now for about 4 days,. Also no sugar or dairy. Many are telling me that this could be a game changer. My doctor thinks it won't make a difference.  I don't trust anything most doctors say about most things CH-related, and particularly about non-pharma treatments, but I tend to think s/he is right about this.  Hope I'm wrong (though you're doing so many things that if you have success, you might not know why -- not that that's a bad thing, to throw what you have against the CH.  In the short run, feeling better is more important (at least in my opinion) than knowing why you feel better.

* Trying to conserve the medication I have. was using Frovatriptan as a preventative but only worked 50% of the time. When i get an attack, I have had some Zomeg a friend of mind gave me. 

* Lately I have been getting more daytime attacks which is odd because I typically get the attacks 2 hours after I fall asleep.

* Oxygen working a little better now that I have a higher flow regulator (max 15 LPM). If I catch an attack early I can knock it out, if caught late, the oxygen does;t work.  Don't forget an energy shot or caffeine when you first get on the O2.  And keep experimenting with breathing strategies to get the most O2 into your lungs and the most room air out of them.  Exhale strongly before your first inhale. Be sure you have a good seal with your mask and there are no open holes.  Breathe the O2 in deeply.  Hold the O2 in your lungs for a beat or two before you fu;lly exhale.

* Have tried migraine excedrin a few times and it actually has worked. That's interesting.  I'd say it almost has to be the caffeine that's doing that.

* I have also stopped drinking caffeine. You've seen my previous caffeine comments.  A lot of people think that a "healthier lifestyle/diet" will treat CH.  In general, it's not going to make a difference.

* A friend of mine who gets migraines is telling me about Hemp Oil (CBD) which she says helps.  I'm lost with these initialized marijuana products.  You could type CBD into the search bar at the top of the page and probably see what some others have said about it.

* I've reached out to "Batch" to get more info on this vitamin D3 regimen which I am not taking correctly at this time according to CHfather. I will still try this regimen as I hear it has great success.  Yes. Do this.  If Batch doesn't respond to you promptly (which I feel pretty sure he will), let us know.

* I've tried taking Benadryl at night and Melatonin/Magnesium but can't say it's helped much or that I have noticed any difference.  Benadryl and melatonin is a strong combination.  Most people go with one or the other at night.  You can take the Benadryl in the morning.  You're not taking it as a sleep aid, but as an antihistamine.  Some people get up pretty high on their melatonin dosage (high-20 mgs) before it's effective, but there's a grogginess tradeoff.

I might be doing too many things and confusing myself but I feel like I have to try multiple things to get some impactful results.

If anyone has had impactful success with anything, please share it with me. I have heard that "busting" works but I'm nervous about that.  I'm not trying to persuade you to bust if you are uncomfortable -- and you'd have to be off the maxalt and the Zomig and the Frovatriptan, I think.  But I will say, as I said above, that the experience of busting with seeds is like taking any other bad-tasting medicine, almost always with absolutely no noticeable side effects.  The seeds are legal to buy and possess, and only unlawful to ingest.

Thank you and here's to your health and success!

Jimmy- 

 

Hopefully my notes in blue above will show up.

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Jimmy, Please try caffeine on the way to your O2. Use an Energy Shot, Energy drink, or even coffee. It really does help. Giving up caffeine is not likely to positively impact your CH. At least try it for your daytime hits. Most of us take it at night and return to sleep very easily. Not all, but most.

I have been gluten free for over two years now with no impact on my CH.I would be more concerned with known triggers like alcohol, MSG, fermented foods and such. Major changes like eliminating gluten and dairy can be stressful in their own right. 

Nine pills a month is a very common restriction on Imitrex pills and other meds in that category.

O2: Using O2 properly is work. Forceful exhale is necessary. Post hit breathing is very important. Make it your first go to with a hit and get on it right away! Down the caffeine on your way!!

Yes, some Migrainers have found that CBD helps. I have not known of any CHers who got relief from it. Migrainers get relief from lying down in a dark quiet place too! CHers do not.

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Thank you CHfather and Spiny so much. Your support and help is greatly needed and appreciated.

Batch emailed me and was a HUGE help. He basically said I am taking the right regimen but asking about a different loading dosage. All of the VD-3 stuff is a little tough for me to understand and implement but I will get help and figure out it so I do it correctly.

This last week has been better. About 5 days without night attacks (which to me are the worst attacks because they rob my sleep/energy).

I've had 2 daytime attacks in the last 48 hours that I was able to beat down using Excedrin Migraine.

I just started taking Verapamil today. 80mg tables, 3 times a day, every 5 hours per doc's prescription.

I'm scared to take the Verapamil because of cardio risk. But maybe it could help knock me out of the cycle I am in?

I'm hoping the cycle will dissipate naturally as it has it the past.

I hope you guys and your family members are doing great and NOT struggling with any pain.

You gave me lots to think about regarding caffeine, going gluten free, etc.

I'm throwing so much against the wall right now that it's hard to know what's exactly working but I am doing better.

To your health and happiness always my friends,

Jimmy-

PS: I'm praying for every CH sufferer and every pain sufferer in the world very day. 

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Good to see that you are better!

The Verap you are taking is a low dose. It may need to be bumped up as you go. I can only take 240mg per day, but that is because of low blood pressure. If your BP is normal with your current dose, you might speak to your doctor about increasing it some in a week or so. There are CHer's who take about 960mg a day!!! Way more than is given to 'regular' patients. Just keep an eye on your BP.

I hope that your doctor has scheduled a return visit soon to evaluate your progress!

I would take my Verap at the times I was prone to getting hit. It seemed to work better that way. For me that meant afternoon, evening and midnight or when I got up at night. It sound like the method you are using is working for you but you can tweak it a bit to meet your needs. Just don't bunch them up.

All the best Jimmy and please stay in touch.

 

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Thank you Matt, Spiny, Bejeeber, CHfather, and Twisted-Melon for all of your comments and help. This is the place where I am getting so much support and help....all thanks to you.

Enough about me! How are you guys doing? Is life pretty normal and good for you guys right now? Are you guys managing the beast or have any of you kicked the beast out of town recently?

The 80MG of Verapamil I am taking doesn't feel right. I feel like I did some speed or something. Sort of a pressure feeling in my chest and a chemical taste in my system.

But good news is that I haven't had a night attack in over week so that means I am sleeping which I desperately needed to do.

I keep feeling and thinking that I am coming out of my cycle and the beast will be gone for a long long time. I need a long stretch of pain free days for that to happen! 

I had 2 day time attacks last week that ripped me up bad and I went on this forum and starting typing to you guys about seeds. I was getting desperate and was ready to try seeds. I felt so "sick" as I was typing I lost the page and never sent it. But that is where I was on Sunday, hoping for seeds help. Maybe even ready for shrooms!

I am so grateful right now that I am fairly pain-free, I don't think I could have been able to handle more multi-attack days and nights. It's been over a month that this cycle has been going.

I can't stand taking all of the medications. It feels unnatural and unhealthy taking them but if they work, I have no choice but to ingest.

I'm also sort of worn out right now of trying to figure out what works and what doesn't work. I've been mostly caffeine, sugar, gluten, and dairy free for almost 2 weeks now and my improved health may be because of it. Who the heck knows!

I miss exercising. But if I workout, a nasty headache is almost certain.

I sure hope you guys aren't in any cycles right now. And I pray each day that you will never experience a headache again. I would give every dollar/possession (happily) to never experience that horrible left eye ball pain again. 

My friend at work has been dealing with this since he was a child and he sort of is resigned to things. I think he takes a huge dose of Verapamil every day. 

I'm trying to encourage him to try new things but he basically has tried everything he tells me. He thinks he just has to "grow out of it" in time.

Here is a quote from my Buddhist mentor Daisaku Ikea that I hope gives everyone strength and courage to keep fighting and believing that this can and will be defeated! Wishing you and your families good health because that is really what's most important. To be healthy.  To your excellent health always, Jimmy-

Hope transforms pessimism into optimism. Hope is invincible. Hope changes everything. It changes winter into summer, darkness into dawn, descent into ascent, barrenness into creativity, agony into joy. Hope is the sun. It is light. It is passion. It is the fundamental force for life’s blossoming.

 

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Hey everyone, just wanted to say hello and let you know I am thinking of all of you everyday, sending you all my strongest deepest prayers for zero pain/ NO CH.

I've had 5 glorious days without pain. What a joy it is to not be in pain and to be able to sleep. I'll never take that for granted again in my life. Never. 

If I had to guess what has stopped the pain, it would be the combination of:

* Less stress at work

* slightly cooler temperatures

* eating no gluten, sugar, dairy, or caffeine for almost 2 weeks.

* Batch's loading schedule of 50,000 IU of Vitamin-D3 for the last week

* Drinking more water

* Taking Verapamil (but I had chest pressure and was told to cut my dosage in half).

* Praying every day

* Reaching out to others who are experience pain or suffering and trying to help them

It scares me to think that the reason the headaches came in the first place was because of the season changing. My guess is that it was because of a stressful work situation.

Who knows! 

I'm just praying to be remain pain-free and I'm continuing the new diet.

Also, I've been taking chinese herbs. If anyone is in Los Angeles, Dr. Majeed gives the herbs. He also HIGHLY recommends staying away from dairy, sugar, and gluten. http://www.alioptimalwellness.com

Wishing you and your families the most precious of all things, good health.

Jimmy-

While it is absurd to reject medical science, the principal factor in overcoming illness is the patient and his or her “life force.” In medical terms, it is our capacity to heal ourselves. Life force is a mystic phenomenon that transcends human understanding.

Daisaku Ikeda-

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