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akiva

PLEASE HELP ASAP NOT SURE HOW MUCH LONGER I CAN HANDLE THE PAIN

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IVE BEEN GETTING CLUSTERS FOR 5 YEARS NOW IM EPISODIC I WANNA KNOW WHAT I CAN DO AS A PREVENTATIVE , I HAVE 0XYGEN THAK G-D FOR ABORTING ATTACKS BUT WHAT CAN I DO TO GET ME OUT OF THIS HORRIBLE CLUSTER OF 3 -5 TIMES A DAY IVE HEARD ABOUT VERAPMIL BUT NEED ADVISE HOW TO GO ABOUT THIS AND IF ITS BEST FOR ME

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Hi Akiva, I am one of the lucky ones that seem to respond well to Verapamil. I take it 3 times and day. I'm on it now but I only use it when I feel a cycle coming on or am in a cycle. I hope it works for you. I'm praying for you to be 100% pain free for the rest of your life...CH free primarily!

Call your doctor and give it a shot. 

I have a feeling there will be a cure in the coming years. 

Warm Regards, 

Jimmy-

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Hi Akiva,

I am one of the UNLUCKY ones that had a terrible response to verapamil. I took it once, and within two hours I was in the most excruciating pain of my life. I am currently in the middle of my 6 week fall cycle and the first half had me going through 2 oxygen tanks a week and getting up to 8 attacks a day. About a week ago I started taking 10,000iu a day of vitamin D3, and within a few days my attacks had gone from a kip 8-9 to a kip 2-3, and went from 8 attacks a day to 3. I went 3 days without any attacks at all, and yesterday I had one that lasted all day, but it stayed around a kip 3-4 instead of 8-9. Today I am pain free and have not had any attacks. I also started drinking about 90oz of water a day. 

Good luck, remember you're not alone.

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3 minutes ago, CHsurvivor22 said:

Hi Akiva,

I am one of the UNLUCKY ones that had a terrible response to verapamil. I took it once, and within two hours I was in the most excruciating pain of my life. I am currently in the middle of my 6 week fall cycle and the first half had me going through 2 oxygen tanks a week and getting up to 8 attacks a day. About a week ago I started taking 10,000iu a day of vitamin D3, and within a few days my attacks had gone from a kip 8-9 to a kip 2-3, and went from 8 attacks a day to 3. I went 3 days without any attacks at all, and yesterday I had one that lasted all day, but it stayed around a kip 3-4 instead of 8-9. Today I am pain free and have not had any attacks. I also started drinking about 90oz of water a day. 

Good luck, remember you're not alone.

HI friend, I'm so so sorry that you are battling this right now. It sounds like you are a pro at battling it. Thanks for the reminder about driving tons of water. Also, for the vitamin D3 regimen, is it crucial to take the FULL regimen or is the vitamin D3 the most important part? I'm taking the calcium, boron, vitamin B, A, Omega 3 fish oil, and a multi vitamin as well as C and B12.

I'm taking 7 Vitamin D3 tablets at day which I believe are 10,000 IU.

I'm praying for you: nam myth range kyo is what i chant and I am chanting for you. If you can't give me your name, I will chant for CHsurvivor22.

take care, jimmy 

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On ‎10‎/‎20‎/‎2018 at 12:25 PM, akiva said:

IVE HEARD ABOUT VERAPMIL BUT NEED ADVISE HOW TO GO ABOUT THIS

You have to ramp up Verapamil, with monitoring of your heart.  Many people with CH need large doses before it's effective -- considerably larger that what is used in its typical application, as a blood pressure med. Something in the range of 960mg/day can be required for full effectiveness.  (The need for such high levels is recognized in the medical literature about CH -- it's not something people do on their own -- but many doctors are not aware of this.)  

The D3 regimen, if followed properly, will probably be more effective for you, and better for you, than Verapamil.

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21 hours ago, Jimmy Martinez said:

HI friend, I'm so so sorry that you are battling this right now. It sounds like you are a pro at battling it. Thanks for the reminder about driving tons of water. Also, for the vitamin D3 regimen, is it crucial to take the FULL regimen or is the vitamin D3 the most important part? I'm taking the calcium, boron, vitamin B, A, Omega 3 fish oil, and a multi vitamin as well as C and B12.

I'm taking 7 Vitamin D3 tablets at day which I believe are 10,000 IU.

I'm praying for you: nam myth range kyo is what i chant and I am chanting for you. If you can't give me your name, I will chant for CHsurvivor22.

take care, jimmy 

Thank you so much Jimmy,

You can call me Iris, and as of right now I am ONLY taking the 10,000iu of vitamin D3 as I am still waiting for the other vitamins I ordered. For me it has done wonders to bring the pain to a manageable level. I haven't had anything above a kip 4 in the last week, as apposed to the 8-9 that I was at before.

I will be sending good energy your way, in hopes that you find peace with this terrible condition.

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On 10/21/2018 at 11:34 PM, CHfather said:

You have to ramp up Verapamil, with monitoring of your heart.  Many people with CH need large doses before it's effective -- considerably larger that what is used in its typical application, as a blood pressure med. Something in the range of 960mg/day can be required for full effectiveness.  (The need for such high levels is recognized in the medical literature about CH -- it's not something people do on their own -- but many doctors are not aware of this.)  

The D3 regimen, if followed properly, will probably be more effective for you, and better for you, than Verapamil.

Every time your dose is altered by 80mg to one way or the other you must get a heart film. I would not recommend verapamil to anyone in a world where we have anti-inflammatory regimen (vitamin D), herbal protocol (liquorice root) and busting (MM, lsd, lsa). It's not used for it's regular uses (heart/blood pressure) not that much anymore because there are better/safer options . IMO 480mg per day is just about maximum for any kind of safe use for majority and even on those doses there usually eventually arises either a heart problem or problem with the response. I've been well over a thousand myself. Verapamil will have an impact for the rest of your life, no matter the dose. I agree with CHfather, do the D3 regimen instead. Good luck !

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...and then there's some of us (me anyway) that found verapamil produced a 70% reduction or dampening of daily destructive debilitating hits.....better than anything else added to O2/caffeine. THAT was a whole lotta light at a very dark time in my life....

...ingesting any med, drug, supplement (artificially or naturally sourced)...heck, SUBSTANCE, taken in a dosage higher than nature typically provides in diet, requires the prudent patient to research the heck out of it...including roots, seeds, leaves, berries, and even mooshies……………..

Best

Jon

BTW: I'm at over 20 different meds in this ch career (plus chemo).... and whatever long term price I have and will pay...nobody is gonna be able to tell "yup, that was the one that did it"...……………….personally, I believe verapamil to be WAY down on the lifetime impacts list...………………….YMMV

BBTW: Yup....D3 fer sure....with O2 back....and CB.org in reach

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Hello, can someone please lay out the vitamin D3 treatment. how much? how often? how long? where i can buy it? I have been suffering from cluster headache for almost 5 weeks now. at least 4 a day. i am taking Imitrex which helps abort the pain but i need to try and break this cycle or at least cut back on the amount of attacks i get a day. i am new to this and need help getting this under control. Thank you...

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On 10/21/2018 at 10:09 AM, Jimmy Martinez said:

Hi Akiva, I am one of the lucky ones that seem to respond well to Verapamil. I take it 3 times and day. I'm on it now but I only use it when I feel a cycle coming on or am in a cycle. I hope it works for you. I'm praying for you to be 100% pain free for the rest of your life...CH free primarily!

Call your doctor and give it a shot. 

I have a feeling there will be a cure in the coming years. 

Warm Regards, 

Jimmy-

Hey Jimmy, i have been getting at least 3 attacks a day for 5 weeks now. I am taking Imitrex as an abortive. I am going to ask my doctor about Verapamil on wednesday when i go in. How long did it take to start working for you?

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jebstuart

When I started out on Verapamil it was a low dose and my doctor upped it slowly over a course of a few weeks. In general you will need about a week for it to get into your syste. I have read on this site and also experienced on my own the standard release works much better then the ER type. a high dose of about 800-1000mg a day can be taken by someone with clusters but no way you want to jump to that amount out of the gate. 

I would also look into getting oxygen to use as a abortive rather then the Imitrex. I currently grab a 5rh energy drink and my oxygen tank as soon as I feel the hit coming on. you can read all about that stuff on this site and ask questions and someone will have help for you. You will also want to read about vitamin D3 here that helps a lot of people manage. 

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FunTimes, 

thank you for the advice. i am willing to try anything at this point. Do you get then 4-5 times a day like i do? it is really starting to ruin me. i work in an office and have to take Imitrex at least 3 times while at work just to function. 

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I am chronic so yes I get them every day. I have just had a 9 day break with no clusters at all. that was my longest in over 5 years. But that fun has come to an end and am back to every day hits. I had 8 yesterday. They come and go with the weather, if you are chronic they come and dont go but fluctuate from not to bad to very bad. You now have a bunch of friends that will help you figure out how to fight this and not everything works for everyone but a lot of things help so you will need to string together a few things that help and build on that.  

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jeb',

You can have oxygen at your office.  You really, really, really want to have oxygen.

If your trex is injectable, you can split your doses and still get fast relief.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/  There are other ways to achieve the same result -- getting it in vials instead of in an autoinjector, or getting a prescription for an autoinjector that's 3 or 4mg instead of 6.

 

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…..not enough "reallys" Chf ;)……….I'd add at least a:  REALLY!!!!

...quick, effective, cheap, easy, portable, NO side effects, life changing...what's to lose!?

….add an energy drink at the earliest hint of a hit (minimum 100 mg caffeine and 1000 mg taurine)...

….consider trying Zomig nasal spray (2.5 or 5 mg) for breakthroughs...my experience it's less of a hammer than Imitrex and 18 hr "free" window with no rebounds...….

….and I'd JUMP on the D3 regimen....it may make all the above moot....

Best

Jon

Edited by jon019

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To CH companions:

Some of you know that I had Shadows (the big devil/CH attack didn’t came)…… well, now I came to know that in these past 2 years (period of no CH attacks) I had Shadows but I was unaware of them, I felt depressed out of nothing, weak body and so on……. I considered them small headaches as for me CH was/is a big thing meaning when it comes it comes with a devastation but now I know: if there is silence it not means that devil is gone, it means devil is here and sometimes moves and disturbs life.

I came to knew that this, ruined state of mind and body, is because of Shadow when a month or so ago my Shadows went a bit further….. long story short: since yesterday taking Verapamil 40 MG (day and night/ total 80 MG) and took a 200,000 IU D3 gel tab (will take another after a week), feeling very well, kind of a SSRI effect on my mood, and no disturbance behind right eye, temple, right side brain and upper jaw… Remember I took first 2 doses of Verapamil in 120 MG each. Maybe going to take Verapamil for next 10 days.

To Akvia: as CHfather said ramp it up! I agree with it. Because CH is unbearable you have to do something. My advice is take big doses (MGs choice up to you) for a few days then lower it when you see CH going down. And, don’t miss D3. Later if CH is gone then continue your D3 course in normal (any dose that suits you). Plus look for triggers. Read through others topics you will find lot of good advice.

To all others present here: learning a lot from you, thanks!

PFW to all!

 

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On 11/5/2018 at 7:17 PM, jon019 said:

BTW: I'm at over 20 different meds in this ch career (plus chemo).... and whatever long term price I have and will pay...nobody is gonna be able to tell "yup, that was the one that did it"...……………….personally, I believe verapamil to be WAY down on the lifetime impacts list...………………….YMMV

I have to comment on this part having gone through well over 20 meds myself. Lots of the "old timers" who have been around for decades and have gone through a bit more rough treatments for CH are ready for anything and are ready to pay any price named. But I don't think that's fair for the young folks. For verapamil the impact may be small - for many anything is small that includes surviving and staying alive - but what if even the little one is avoidable. We have a finnish patient group sized 1300 people at the moment and many people who are not even at their twenties yet arrive and join our group and have had to give up a sports hobby for an example due to verapamil. They learn of anti-inflammatory regimen and if they're lucky will avoid further heart issues, discontinue verapamil and seek safer options. That's also the reason why I am still writing in the internet; I hope that one day all patients would have all the options laid out for them and they could pick the most effective and least potential to cause any size of negative impact later on in life out of all these options. First. It's a long way until we're there though.
In large sized groups that have gone on long enough, certain side effects are associated to the same drugs over, over, over and over again. What makes it difficult is that they won't happen to everyone but there are certainly things that should be avoided (if there is another option to something).

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I was in the throes of a horrible episode and have found that Prednisone is working wonderfully. I haven't had a headache since the 2nd day I started dosage and my system seems to take the drug pretty well. Started at 60 mg a day (20 mg), down to 40 mg a day and next week down to 20 mg a day if all goes well. Of course, it's going to interfere with my cholesterol but it's worth it. They were so bad (8-10 a day) my neuro skipped the verapameil step. I'm probably one of the lucky ones because I have episodic versus chronic but it's still working well.  I got Sumatriptan Nasal spray but haven't had to use it at all. 

So glad I discovered this forum!

Best of luck.

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Cheryl,

Yep Pred tapers work great, but the problem is our bodies can't stay on Pred due to the wake of destruction it does to us.  If you're still in cycle, once you come off the pred, sadly the CH comes back. :(

Normally Pred isn't used alone due to CH returning after the dose pack is done.  It's often prescribed with verapamil to temporarily stop our CH while the verapamil builds up in your system.  (for those that verapamil works)

J

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22 minutes ago, ThatHurtsMyHead said:

while the prednisone builds up in your system.  (for those that Prednisone works)

Cheryl,

Just for clarity sake, I'm pretty sure THMH meant to write verapamil in the two places where it says prednisone there.  And going back to your post, Cheryl, for the reasons THMH gives it probably was not wise for your neuro to "skip the verapamil step." Here's hoping the prednisone alone was sufficient, but again as THMH wrote, it rarely is unless your cycle in ending anyway.  At least, I hope you're also doing something with the D3 regimen. 

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