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Cluster Headache Help and Support >> Getting to Know Ya >> New Comer
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Message started by Zjaniene on Nov 17th, 2011 at 4:26pm

Title: New Comer
Post by Zjaniene on Nov 17th, 2011 at 4:26pm
Hey everyone!,

My name is Zjaniene and I'm 20 years old.  I've been having cluster headaches for about a year now.  For most of that time period I had no idea what was going on with me, I refused to go to the doctor because I was scared of what they would tell me.  Just this past week my boyfriend (Cole) and my parents forced me to go to the E.R. because I couldn't stop crying from the pain.  I begged them to just give me a gun so I could put myself out of my own misery.  I'm a sufferer of pain on the right side and my symptoms are getting worse.  Now its not only my head that hurts but my eye, ear, jaw and neck.  Never in my life did I expect to be in this kind of pain and I would never wish it on someone else.  Thankfully Cole is very understanding and tries to help as much as he can when I'm having a bout.  I don't like him seeing me like that but there's nothing you can do.  The doctors put me on steroids for now and I have to go in for a follow up appointment, what I have noticed that helps me a little is getting more oxygen, caffeine and water.  My head never fully stops hurting, but at least now I know when a bout is coming on so I can be as prepared as you can get.  I'm glad that I found this website so I can talk to others who suffer from this condition.  Thanks for reading.

Sincerely yours,
Zjaniene

Title: Re: New Comer
Post by Guiseppi on Nov 17th, 2011 at 5:51pm
Welcome to the board Zjaniene. First off, we need to get you referred to a headache specialist. 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.

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


PS:....that's a tough font to read! ;)

Title: Re: New Comer
Post by Mike NZ on Nov 17th, 2011 at 8:07pm
Hi Zjaniene and welcome.

Joe has given you some great advice, especially about working with a headache specialist as this is the best way to get an accurate diagnosis and the appropriate treatement.

Just over a year ago I came here knowing nothing much more than I had CHs and I'd been given some medication to try to prevent them. By reading a lot and asking lots of questions I am now able to both limit how many CHs I get and to kill off those that arrive in minutes using oxygen.

Do ask Cole to come to these forums too so he can help you learn more about CH.

So read up and ask as many questions as you can think of.


Title: Re: New Comer
Post by bejeeber on Nov 17th, 2011 at 10:04pm
Hi Zjaniene,

So glad you landed here because it has been info and advice from other CH'ers - not so much from doctors - that has enabled me and so many others to find some really significant relief.

There are chronic CH'ers who have gone into remission after going on the relatively new D3 regimen Guissepi/Joe recommended, and lots who have gone into remission with the clusterbusters approach which Joe also mentioned and which has been known to modern day CH'ers for years now (and known to some indigenous peoples for millennia).

Here's a condensed D3 link:START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

And a news article on clusterbusters: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

The high flow 100% o2 is priceless as an abortive BTW.  :)


Title: Re: New Comer
Post by Bob Johnson on Nov 18th, 2011 at 9:06am
Before you start making choices of treatments, it would be wise to get confirmation on your diagnosis, i.e., see a headache specialist..

This is not a simple disorder either to diagnose or to treat. Too many folks have wasted time by not getting a well ground start.



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.






Title: Re: New Comer
Post by Virginia on Nov 24th, 2011 at 9:31pm
Hi sweety so glad u found us......well not glad for the headaches but for being around others who know your pain....

I have one things to say....you are very lucky to have someone who is understanding...I know its hard to allow someone to see you when you are at your worst...but if someone loves you at your worst imagine how they will love you at your best -hugs- keep your head up and use the shoulder that is offered...sometimes it is the best medicine

Title: Re: New Comer
Post by Brew on Nov 24th, 2011 at 9:58pm

Quote:
but if someone loves you at your worst imagine how they will love you at your best

When it's real love, it doesn't change from worst to best.

Title: Re: New Comer
Post by Taciter on Nov 24th, 2011 at 10:48pm
Hi Zjaniene,

I'm glad you found 'clusterheadaches.com', your experiences sound so familiar and there's nothing quite so reassuring as knowing there are other people who can relate to them so personally.

Well done for taking the first step, I'm glad your boyfriend is being so supportive and I wish you all the best for the future. :D

Title: Re: New Comer
Post by Virginia on Nov 25th, 2011 at 12:37am

Quote:
When it's real love, it doesn't change from worst to best.


and once again you completely take what I post and turn it into something stupid....dude seriously...I mean if this is what helps your headaches then do it to people who dont mind...honestly...everyone else probably knew exactly what I meant....

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