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Hi new here (Read 1282 times)
nyy49
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Hi new here
Jan 2nd, 2012 at 7:53pm
 
Hi everyone i suffered from cluster headaches for 16 years. Going to doctors neurologists everything you all have. I found my own cure unforturantly. I had a drink of rum 3 three years ago. Woke up headache free didnt think much about it. Drinking usually made me suffer worse than ever. Anyway i forgot about it my exwife reminded me i was headache free after drinking it. fast forward 3 years i am divorced a raging alchoholic but headache free. I dont want to keep drinking but if that keeps me from living hell of those headaches i guess ill be drunk everynite. If someone reads this and can offer me some support. Im at the end of my rope. Thanks.
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IndianaJohn
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Into the jaws of the Beast


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Re: Hi new here
Reply #1 - Jan 2nd, 2012 at 8:14pm
 
so sorry you are in pain.  there is a ton of information here about CH.  hang in there and get informed.  Do you have any meds? Oxygen? Anything?

I gotta ask though, you drank alcohol?  that usually sends 99% of us into a raging head ache.

get informed and get to a doctor. there is help available, you are not alone

John
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Did my brains fall out or is this headache over?
 
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Guiseppi
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Re: Hi new here
Reply #2 - Jan 2nd, 2012 at 8:25pm
 
Welcome to the board . There is a world of help available to you, but all avenues require a willingness on your part to take the bull by the horns and take charge of your condition. Sitting back and hoping a doctor will help you is an almost guaranteed prescription for many painful nights.

Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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norkAch
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Re: Hi new here
Reply #3 - Jan 3rd, 2012 at 11:53am
 
Greetings nyy49,

You have indicated that you are currently pain free from the Cluster Headaches but suffered from them for sixteen years.

It wouldn't surprise me if that picking up the drink and the end of your Cluster Headaches was nothing but a coincidence and the only way to truly find out is to put down the drink.

IF you walk away from the drink and start experiencing the Cluster Headaches again, you my friend have probably the least expensive, most widely available abortive and preventive therapy I have heard of so far.

Your therapy just like most of ours has it's limitations and consequences, but please know THERE ARE OPTIONS.

As you move forward please keep us posted.

Blessings to us all,

d

As always Thank You, Thank You, Thank You for all those that have suffered before us.

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coach_bill
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Re: Hi new here
Reply #4 - Jan 3rd, 2012 at 9:07pm
 
nyy49,

My dad was a drunk. It was not even in the relm of a normal childhood. Im glad the rum helps you.. Oxygen seems to work pretty well for me.

Ive been to rock bottom, Dont have any desire to go back there, But my unasked for thought here is that you should be a better friend to yourself. Thats it in a nutshell... Be a friend to yourself. Best wishes...

Set UR Feet...
Coach Bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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LasVegas
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Re: Hi new here
Reply #5 - Jan 3rd, 2012 at 10:17pm
 
If you've suffered from CH's for 16 yrs, you are most likely in a remission as CH's rarely cease.

If/when your next CH cycle begins, chances are you will learn FAST to put down the bottle.  Why wait?

You might consider getting some AA help NOW, before your next cycle. 

Battling the TORTURE by the DRAGON and alcohol withdrawals at the same time will most likely be just a tad too much to cope with. 

I offer this advice as a CH sufferer who battled Morphine withdrawals at the beginning of my cycle that just ended last week after 5 months.  So I can confidently write quitting an addiction NOW would be in your best interest.

Withdrawals + CH's = HELL and this most recent cycle of mine was a tough challenge, to say the least.  Good luck!
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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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Eroc
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Re: Hi new here
Reply #6 - Jan 4th, 2012 at 8:11am
 
I too battle with alcohol and also was very affraid to make any changes to my habbit of 3-5 drinks a night fearing that if I stopped it would trigger a cycle. 

Well the cycle came despite my best efforts to drink every night for the past 2.5 years.  Having this most recent cycle may have been the best thing for my body as a result. 

A.  I found that after withdrawl (which I didnt really notice as I was dealing with HAs) I can go to sleep without a drink just a little 10 mg melatonin.

B.  Alcohol will not keep the beast at bay. 

I still struggle with the daily desire to drink but feel I have a new lease on life and feel much better by going to sleep rather than passing out. 

Just my 2 cents.

Thanks and good luck,

E
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EHanson1980  
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nyy49
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Re: Hi new here
Reply #7 - Jan 4th, 2012 at 10:05pm
 
i really hope you guys dont think out of the blue somebody without these headaches would post here. hell nobody i know even doctors have heard of them. yeah sailor jerry rum helped and i dont know why. i want to quit drinking but im scared because of the pain. sorry if i offended you.
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LasVegas
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Re: Hi new here
Reply #8 - Jan 4th, 2012 at 10:31pm
 
nyy49 wrote on Jan 4th, 2012 at 10:05pm:
i really hope you guys dont think out of the blue somebody without these headaches would post here. hell nobody i know even doctors have heard of them. yeah sailor jerry rum helped and i dont know why. i want to quit drinking but im scared because of the pain. sorry if i offended you.


There have been countless people that have posted here on this website who don't have Cluster Headaches.  Many of them are supporters of those who do suffer. 

Some are spam which are spotted quickly. 

Many are trying to figure out what's wrong with them, just to find out through our help and resources on this site, that they have another medical condition.
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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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Eroc
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Re: Hi new here
Reply #9 - Jan 4th, 2012 at 11:01pm
 
nyy49 wrote on Jan 4th, 2012 at 10:05pm:
i really hope you guys dont think out of the blue somebody without these headaches would post here. hell nobody i know even doctors have heard of them. yeah sailor jerry rum helped and i dont know why. i want to quit drinking but im scared because of the pain. sorry if i offended you.



I dont think you are falsly posting.  I too was affraid to stop drinking, smoking, sleeping, and chiropractic adjusting for fear that the beast would come back. 

For 2.5 years I drank every night at the expense of my social life, my family, and my career. 

My personal experience was that it will return no matter what I did to stay "regular". 

In my experience, and everyones is different, is that if you do indeed suffer from CH it will likely return despite what you do.   On this site there is a whole world of support that will help you cope with CH. 

I am not a doctor but again from personal experience with excessive alcohol abuse, I believe your connection to rum and CH is likely not connected. 

I would recomend slowly backing off from the usual number of drinks by perhaps 2 a day or 2 every other day.  No different than if you were to titrate off of prednisone for example. 

If you begin to feel shadowing or a slight odd feeling behing the eye that you usually feel the HA behind then there might be a connection. 

Also I would as others indicate find a competent neuro that is familiar with CH.  There are many treatments that help folks like us. 

Also worth a try is to ramp up on the 123 days pain free regimine before you try backing off on the booze.  It was stated in an article that there is a connection between alcoholism and a decreased vitamin D3 content.  I personally have been on the D3 regimine and have been PF for 18 days.  It appears to have stopped a cylcle in its tracks. 

Lastly if you are not willing to try some different aproaches to treating this disease then there is really not much any of us can do to help.  We are all here to help and there are many tools to cope and break the cycle that do not kill you and your life at the same time.  But again you do have to try.  I can honestly relate to the drinking theory.  I was drinking a 1.75 of Smirnoff in 4 days or less for fear that if I backed off they would return.  But one day 8 weeks ago they still came back to kick my a$$.  It was ineviteble. 

Again please understand we are all here to help you.  You simply need to be willing to be helped. 

Just my 2 cents. 

Good luck and if you have any questions please dont hesitate to contact me or any one else here. 

E

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EHanson1980  
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