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Cluster Headache Help and Support >> Getting to Know Ya >> So happy I found you!!!
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Message started by elana on Nov 27th, 2011 at 7:58pm

Title: So happy I found you!!!
Post by elana on Nov 27th, 2011 at 7:58pm
I'm just coming off a five day attack...first day since tuesday that I haven't been blinded by pain.  I feel like shouting from the rooftops that i finally found people that understand the pain.  My husband tries to help but he feels helpless.  I have a 6 and a 7 year old and have to "push through the pain" alot so I don't scare them.  I just wanted to say hi and again thank you all formeing on this site...I think I'll spend the rest of the night reading every word posted...  (reading your posts make me feel I am not alone...I too have begged to be put in a coma, debated whether or not to go to the ER, missed work, missed whole days, etc.  While I wouldnt wish this kind of pain on my worst enemy I will say again I'm glad I found you all  :D

Title: Re: So happy I found you!!!
Post by Guiseppi on Nov 27th, 2011 at 8:56pm
Welcome to the board Elana. Yeah, the good news is you're not alone. The really good news is there are numerous treatments to make your life much more manageable and bring beasty back under control. Hearing you miss out on raising your kid just pisses me off!  [smiley=hug.gif]

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE


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. You can just click on this link:

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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

Title: Re: So happy I found you!!!
Post by bejeeber on Nov 27th, 2011 at 9:49pm
What Joe said :), plus I'm very happy you found us too!

Your sentiments such as "wouldn't wish this on my worst enemy" are of course widely held by us CH'ers.

Here are a couple of my personal favorite beast killing info links, expounding on what Joe mentioned already:

Condensed D3 info - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

A Newsweek article on clusterbusters, and a clusterbusters video talk by one of our fellow CH'ers -

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE


Title: Re: So happy I found you!!!
Post by Virginia on Nov 27th, 2011 at 11:55pm
Welcome Elana, I know exactly what you mean about being so happy to find this site, thats how I felt....

Its amazing what we can "push through" when we dont have a choice huh...I have found out that my pain tolerance is actually pretty darn high....but boy I sure wish I hadnt LOL

Title: Re: So happy I found you!!!
Post by Linda_Howell on Nov 28th, 2011 at 8:50pm
welcome Elana,

I ask this of everyone who doesn't put this in their profile when they sign up....where are you living?  I started a thread up above that people mistook as a second "getting to know you" and all Bob Johnson and I were trying to do is  get new people to put where they live in their profile.  The reason for this is that us clusterheads are everywhere.  The U.S., Europe, Australia, etc.  We know one another for the
most part and for instance...if you lived in Western Kentucky where I live and needed 02...I could help you immediately.   You see where I'm coming from?   

What we're here for is to help and it makes it hard to do that if we don't know where you are.  02 in the U.S. is a whole different ballgame than in the U.K. for instance. 

We're glad you found us too, sweetie and read, read, read.  Ask us questions.  That's what we're here for.


Title: Re: So happy I found you!!!
Post by elana on Dec 1st, 2011 at 4:18pm
Thank you all so much!  To answer some of your questions: I live in east central florida.  I have seen every kind of doctor.  One of the problems with my situation is I was wrongly diagnosed with hormonally related Migraines. (Although a part of me thinks i suffer from those as well- does any know if its possible to have both migraines and clusters? I have tried imitrex, unfortunatly while it did work for quite some time, it doesn't now, even the injectibles.  The scary part about my last episode is that my doctor injected me with phenergan and tornadol to put me to sleep...that has worked in the past but did not work this time.

This is all new to me so its taking me some time to learn your lingo, read through all the treatment options, etc but I appreciate the warm welcome and look forward to getting to know you all (although I wish we met in better circumstances...)

Title: Re: So happy I found you!!!
Post by Skyhawk5 on Dec 1st, 2011 at 7:34pm
welcome to the site Elana,

It is possible to have multiple types of headaches at the same time. Also there are headaches that mimic CH. Getting a firm diagnosis is sometimes very hard to do. Have you taken the "cluster quiz" on the left of this screen?

Not doubting you, but it helps sometimes. Also look at the "oxygen info" this has helped me and others a lot with fighting our CH.

Again welcome to CH.com.

Don

Title: Re: So happy I found you!!!
Post by coach_bill on Dec 5th, 2011 at 8:43pm
Elana,

You didnt find us...  We found you!!

Coach Bill

Title: Re: So happy I found you!!!
Post by Bob Johnson on Dec 6th, 2011 at 4:55am
Please do what Linda has asked: get your identification/location posted as part of your identification which appears with each posting.
--
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
======

We cannot diagnose! The complexity of your situation makes it unwise for either you or us to try and make such a call. EVEN if we could diagnose, you would still need a good doc to develop the sophisticated treatment plan which is needed.   So----

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.






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