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BluesFan85

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Hi my name is Jacob I'm 31 been suffering since 14 and it completely ruined my life at 18.  For the last 2 years I pretty much haven't been PF ever, maybe a few days at the longest.  I was episodic for the whole time until the last 2 years and now I know I'm chronic.  I've taken pretty much everything and nothing works.  Since Sunday night I've been getting a hit about a 7-8 every time lasts about 45 minutes and then about an hour and a half later it starts again.  So I've been getting like 12 hits a day now for the last 3 days and I'm just distraught.  I just want to go to sleep and not wake up for the 1st time in a long time.  I've been battling this for some time now, not as long as others but long enough.  Usually I never feel like I want to you know kill myself but this continuous wave of attacks is pretty much cutting me down to nothing.  Besides my parents I'm completely alone, have no money, friends, girlfriend, just nothing besides food and a roof over my head which I am thankful for though.  The only treatment I've not tried is the mushroom route which I've decided I'm going to go.  I just needed to vent right now.  I haven't been able to hold a steady job since I was 18, I can't work.  Everyday I just keep getting hit with attack after attack after attack.  Anyways I know I'll make it I just so want to give up right now though but it just wouldn't be right I couldn't put my parents through that you know?  I don't know I just want to say hi to others on here and just vent what I've been going through personally lately.  Hopefully I can get a few hours right now with out an attack so I can clean myself up a bit cause I'm just looking like shit

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Several of us have been there...still are there at times. I wish I had some great advice for getting you through this. It is so difficult to explain the level of pain to those that have never experienced this. Do you have oxygen? Even when it doesn't help me much it can calm me down a bit.

Hugs

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Hello Jacob, most of the people on this site have been where you are now. In order to get the best advice/help please tell us about your back ground with treatment, a lot of people think they have tried 'everything' before coming here and that is not always the case.

Do you have oxygen and know how to use it properly? if not please read up on it and check the files on this site.

Are you currently taking any Dr. prescribed meds ? if so, please let us know what they are.

Have you been diagnosed with cluster headaches by a doctor?

There is nobody here that can 'cure' cluster headaches, but there are plenty of smart people who can teach you how to manage this awful disease and hopefully help get you some pain free time. I found this site about 4 years ago and it changed my life. Please tell us what you have tried, and what you are doing currently to try and manage the pain, and we will try and help you.

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Jacob,

Sorry to hear you're in a bad place.  It does get better.  There are thousands of us now that can attest to that!  As far as I'm concerned mm is magic at kicking our CH to the curb. Have you tried sleeping sitting up in recliner?  That's magic for me at reducing the frequency and intensity of the night attacks.  

I started taking mm, and LSA (seeds) about (hmm maybe 8) years ago now and it's completely changed my life for the better.  

I'm curious, where in the states are you?  

PFW,
J

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On ‎5‎/‎11‎/‎2017 at 7:18 PM, sierra said:

 

 

On ‎5‎/‎11‎/‎2017 at 7:18 PM, sierra said:

Hello Jacob, most of the people on this site have been where you are now. In order to get the best advice/help please tell us about your back ground with treatment, a lot of people think they have tried 'everything' before coming here and that is not always the case.

Do you have oxygen and know how to use it properly? if not please read up on it and check the files on this site.

Are you currently taking any Dr. prescribed meds ? if so, please let us know what they are.

Have you been diagnosed with cluster headaches by a doctor?

There is nobody here that can 'cure' cluster headaches, but there are plenty of smart people who can teach you how to manage this awful disease and hopefully help get you some pain free time. I found this site about 4 years ago and it changed my life. Please tell us what you have tried, and what you are doing currently to try and manage the pain, and we will try and help you.

Hey yeah I have been diagnosed by a neurologist at age 18.  I do have oxygen and know how to use it but it honestly doesn't work for me, my tank is actually empty I gotta get a refill just haven't jumped on it since like I said it wasn't working it just prolonged the shadow part kind of and would hit eventually.  I'm currently taking Verapamil ER 100mg 3x/day which I thought was working but now I don't know. I've taken Lithium, tope something, maxalt, imitrex, predisone, vitamains (d3), and some I can't remember it's been a lot of years.  Besides the last 2 years I was episodic, around the 4th of July they'd start and I'd have them till about end of October about 3 months.  It was like that for many years, so I've always hated summer so much because I could never do anything like drink and party with my friends ya know?  I was in my 20's and I couldn't party or do anything really cause I'd get attacks and I needed to be at home cause I didn't want anyone to see me you know?  Anyways the last 2 years they didn't stop in October like they always do they continued and up until a year ago I would get them a lot but I would get a few weeks where I'd get like 1 or 2 a week that were you know like 4's on the pain scale and I could fight through them and live normal pretty much.  Then about a year ago I haven't been able to go pretty much 48 hours without getting an attack.  Some days I might get a bunch and there intense like 9's and maybe a 10, I'd get 1 and then an hour after if ended I'd get another and so on and this might happen for like up to 6 hours then they'd stop and I might get a day break with 1 attack that's manageable until the horrible ones happen again.  It's been like this for a year know so as of know I'd have to change from episodic to chronic, it sucks.

 

 

I just wish I could figure something out that would make them manageable so I can get some of my life back you know what I mean?  As of right now my life is Cluster Headaches that's it I have nothing else because I can't do anything else they control everything!!!  Oh I'm 31 now and I do smoke which I also quit for a year but it had no effect on the CH's getting better or going away. Just thought I'd add that

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Hey I was there. Same story. You can get your life back there is hope. Read this whole site the answers are here the support is here. Read through the clusterbuster files and decide on a treatment you are comfortable with. People are here to help. Will they be cured probably not but you can find ways to get more of you life back.

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Rsrsrs, I was there to. Horrible place indeed! 

Yes, for sure it did fuck up my live deep but not for ever :)
At the end of the day, after 5 years of hard struggling I suddenly found this site and great relive going into PF time. Not curet, probably never will but I'm pain free 99% due to the great people from this portal.

Sometimes a tool fails. This is when is just switch to one of the other well known techniques from CB-site eventually switching back later.

Obviously one neurologist can't accumulate all the know-how offered here? There is no way one could achieve this by himself. A whole/big group is needed in order to verify/proof techniques and results given. I personally call it Crowd-Development. Probably the best term defining what ist going on here...

So I just chimed in order to give a strong and positive statement.
Stick firmly with tips/answers from all the fellow CH heads here. I'm sure seeing you soon getting substantial relief and of course getting your live back in order to have pain free time. We can't offer cure but pain free time and attacks cut to near 0.0

There are Hunderts of stories like yours ending very well, so please go on BluesFan85

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On 5/19/2017 at 8:31 AM, BluesFan85 said:

I just wish I could figure something out that would make them manageable so I can get some of my life back you know what I mean? 

Yep, know what ya mean, and if you take the encouragement offered so far to keep searching and asking about stuff here, I figure that's one of your best bets for attaining manageability and getting the life back. Lots of CH'ers have.

As CH goes, you appear to me to have a particularly severe case, which is saying a lot. I feel for you man, and incidentally would like to know if it's blues music you are a fan of, and if so, which artists? :)

 

 

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I'm new to these boards. I went into 13 years of remission. Then 4 weeks about they're back. The pain isn't anywhere near as bad near as in my younger years (i'm 51 now) You sound a lot like me. Started around 17-18 years old, then the worst was from my mid 20's-30's Sometimes some people "outgrow" them. I know where you're at & I feel for you. I've been reading this board since yesterday & I cannot stop. I need to be informed. Hang in there! 

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