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Where to start... (Read 823 times)
22yearsufferer
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Where to start...
Mar 5th, 2018 at 11:23am
 
I have had clusters for 22 years. Not continually thank goodness or I probably wouldn't be here to type this.† When my CH started it was shortly after my daughter was born. I thought maybe it had something do with the epidural. WRONG! I went misdiagnosed by several doctors including neurologist until 2010, when I had CH for 10 straight days and landed in the hospital. I was using injections, pills, nothing, NOTHING was helping it. Before, 2010 I was baffled why NO one could tell me what was wrong with me. Why was getting this beyond describable pain in my right eye and ear, why was nose closing off on the same side and how could they come so fast, last sometimes 10 min to 30 min and just be gone? I had MRI's, X-rays, CT's, not a single clue. Finally I knew what they were, now I had to learn about them, how to treat them and how to live with them. The learning about was easy. READ, READ, READ!! Treating them and living with them not so easy!
Now, I was in the hospital for four days, being pumped full of IV pain meds, because I live in a small town with pardon me, CRAP doctors!! My doctor didn't know what to do, so he did that. It was while I was in the hospital I had an intern that came in and talked to me for a very long time, listened, and he's the one that said "I believe you suffer from cluster migraines" The sky's opened up, I had answer. He suggested I start verapamil, so I did. I went 8, yes 8 years without an episode. Thought I was in the clear, that I was not going to have another after suffering so many years of not knowing. Well, it seems I am in a cycle and yes they have returned after an 8 year remission.† I am currently on a mission with a new doctor to try and find something that will help.† I am considering O2 therapy. I recently tried and went of topamax, there aren't enough characters remaining for me to describe HOW awful that medicine was for me. I'm having on average 2 a day, most always around the 9pm hour, some do show up between 2-3am. Pain level can be a 5 or 5000, I have been using nasal spray (Imatrex) it seems to work in bringing the pain down to a tolerable level, but I am sure it is not what is making them go away. After I have one my body is so sore and I am exhausted, especially after the early morning hour ones. They seem to be the most intense in pain. I am depressed that I went 8 years thinking I was going to be in remission for the rest of my life and here they are in all their glory!
I am interested in natural remedies. I am going to talk to my doctor about the D3, Omega Fish Oil regimen. I was wondering, has anyone tried medical marijuana? I've read studies but none of them seem to have a clear yes or no. I'm curious if anyone here has tried it?
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AussieBrian
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Re: Where to start...
Reply #1 - Mar 5th, 2018 at 8:13pm
 
G'say,† 22,† and welcome.† Regarding topomax,† you may be interested to know that around these parts it's commonly referred to as dopey-max.

As to considering more natural ways of attacking this monster you'll find plenty of excellent info here on the Vitamin D3 regime which,† along with a healthy diet,† is proving wonderful for many people.

Another consideration is the controlled use of certain mushrooms and you can learn all about it by looking at ClusterBusters which is the bottom button down the left side of your screen.

Getting attacked again after 8 years must have been devastating but it's good to know you're ready to take control and fight back.

All the best from down under,

Brian.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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22yearsufferer
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Re: Where to start...
Reply #2 - Mar 6th, 2018 at 8:05am
 
Thanks for info Brian.  I am definitely looking in to the D3 and Omega Fish Oil.

Aside from trying to get these damn things under control, I wish I could get the people around me to READ and educate themselves on CH's so I would stop hearing "maybe if you tried...." or "I know when I have a headache I do this" IT IS NOT A HEADACHE, IT'S MUCH MUCH MORE!!! I'm going to start handing out flyers I swear!

Thanks again. I'm going to stay around on the forum, I found a lot of useful info here just the short time I was on it!
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Peter510
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Re: Where to start...
Reply #3 - Mar 6th, 2018 at 12:57pm
 
Hey 22....

Welcome to CH.com

Trying to get the people around you to understand is something we all know. The following might help:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Also, I donít know if you have the most up to date paper on the D3 Regimen. If not, here it is:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

I would suggest you give a copy to your Doctor as a basis for discussion. Over 80% of those of us using it have had significant benefits.

Keep posting,

Peter.
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« Last Edit: Mar 6th, 2018 at 12:59pm by Peter510 »  

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Mike NZ
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Oxygen rocks! D3 too!


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Re: Where to start...
Reply #4 - Mar 6th, 2018 at 4:13pm
 
We've all had many suggestions from people who have zero understanding of CH as to what we can do, with a lot of them posted here - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Oxygen can be amazingly good at killing off CHs. We've an O2 page - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.
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Callico
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Re: Where to start...
Reply #5 - Mar 6th, 2018 at 10:06pm
 
What they said. ^^^^

I strongly urge you to get started on the Vit D3 regimen. The only reason I'd discuss it with my doctor (most know even less about nutrition than they do about CH) is to get a blood test to establish a baseline as to where you are.

I'm a 50+ year clusterhead, 20+ of those years chronic with 5-8 attacks a day. Vit D3 gave me about an 80% reduction in both pain and frequency. It would be my beginning point, even before any of the pharmaceuticals. I've had most of them, and still have the side effects 20 years later. The only side effect I've had from the Vit D3 regimen has been greatly improved health all the way around.

That covers the preventative side. On the abortive side, get a prescription for oxygen at a flow rate of at least 15 liters/minute. Many of us find 25 lpm or greater is much better, but getting a script for 25 lpm filled is nearly impossible. Get the script and we will help you find a higher flow regulator and you can up it on your own. See the "oxygen info" button in yellow on the left of the screen. Then go down to the "CH.com store" button in yellow and order the O2 mask set from there. It's a mask designed by a clusterhead for clusterheads and is far superior to what you'll get from your O2 supplier.

IF you cannot get a prescription for O2, (Yes, there are doctors who are that moronic and uneducated.) we'll help you find welding O2 and your own regulator. (It's the same as med oxygen. Comes from the same fill pipe at the supplier. Just a different type of tank and less expensive.)

You have found a new family. Given time, you'll find some of us to be closer than your own kin. At least, that has been my experience.

jlc
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
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22yearsufferer
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Re: Where to start...
Reply #6 - Mar 7th, 2018 at 3:24pm
 
so far everyone here has been AMAZING!! I am so glad I didn't stop searching when I was looking for a website for help! I was really looking for information what I found was soooo much more!!! I will keep you all posted. I go back to the PCP next week for a follow up, we are going to have a chat about the D3 regimen and O2. Thankfully I have a really great PCP and he listens to me and researches with me. I am sure he will be willing to try it since I drive him crazy about how these prescriptions are slowing killing me!! (a tad exaggerated)
Thanks again all! I can't wait to share the information about CH with these people in my life so they can be somewhat up to par and stop throwing out suggestions!
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Where to start...
Reply #7 - Mar 8th, 2018 at 12:32am
 
It's great to see a post like this. You're taking control of your CH, using information about how to prevent CHs or kill them off quickly.

But no matter what you do, you'll still get people giving you suggestions about something they saw online. However no matter how crazy these suggestions are, they are still trying to help you.
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22yearsufferer
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Reply #8 - Mar 8th, 2018 at 8:46am
 
Hey All!!!
I wanted to jump on this morning (I'm in Ohio) and tell you what I experienced last night. I think for the first time EVER I kept a CH at bay, and yes it was by doing something someone on here suggested. I can't remember who, I will search them out later and give them a BIG THANK YOU! Any way, as soon as it fit, I mean my first eye piercing, knife pain, I told my husband (who is wonderful I might add, he takes excellent care or me during these damn monsters) he got me the biggest, coldest glass of water, I downed it, no stopping, got another, I downed it no stopping, IT WORKED! Within about 5 minutes the pain had subsided enough I could breath normal and sit down (no sitting when one hits, mostly rocking like I'm holding a baby) I was pain free in about 20 minutes and remained pain free the rest of the night, I slept clear through, well except for having to pee because I drank so much water.  This is the first morning I have felt like doing my hair and wearing make up in WEEKS!! I feel like I have won the lotto all because I found this forum! SOOO THANKFUL!!!!!!
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MDR
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Re: Where to start...
Reply #9 - Mar 8th, 2018 at 6:27pm
 
Even a hot cup of coffee at the first hint of the pain works for me I drink it down as fast as I can.

Mark.
MDR
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jon019
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Re: Where to start...
Reply #10 - Mar 8th, 2018 at 8:31pm
 
THANK YOU 22YS...we LOVE hearing news like this...it's why we are here!!!!!!!!!!!!!

Best

Jon
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The LARGE print giveth....and the small print taketh away.    Tom Waits
 
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AussieBrian
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Re: Where to start...
Reply #11 - Mar 8th, 2018 at 10:33pm
 
Glad the water is working for you, 22,† and if you look at the buttons on the left there's one there just for you.† It's called Water x 3 and quite a few have had some luck with it.

Our good friend MDR mentions a serious cup of coffee when things start going wrong and a surprising number of CHeads are getting excellent results by guzzling down a can of Red Bull at the first sign of a hit.† Seems it's the caffiene and taurine content,† working together,† that create a little magic for us.

The only way forward is forward,

B.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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jon019
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Re: Where to start...
Reply #12 - Mar 8th, 2018 at 10:48pm
 
AussieBrian wrote on Mar 8th, 2018 at 10:33pm:
The only way forward is forward,

B.


That 'bout sums up the WHOLE " raison d'Ítre" of this site....thank you Sir!
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The LARGE print giveth....and the small print taketh away.    Tom Waits
 
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Where to start...
Reply #13 - Mar 8th, 2018 at 11:49pm
 
AussieBrian wrote on Mar 8th, 2018 at 10:33pm:
The only way forward is forward,


Sometimes it can be 3 steps forward, one to the left, one to the right and one backwards, but getting in control of CH is awesome.
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Peter510
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Re: Where to start...
Reply #14 - Mar 9th, 2018 at 4:18am
 
22,

Some of us wolf down an energy drink ( Red Bull, monster etc) at the first indication, with some success.

Let us know how it goes with the Doctor.

Peter.
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