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First Timers! (Read 14457 times)
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Re: First Timers!
Reply #25 - Apr 13th, 2017 at 8:28am
 
Hi,
   
Existing member here.

It's been a while, and I got locked out of my old account.

Too many hoops to jump through (and the captchas are near impossible).

I gave up trying and made this account with a disposable email - and again nearly didn't as the capchas are too hard.

Is there any way someone could email me and get me back in to my old account?

I'll use this 'new' account for now.
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stg1
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Re: First Timers!
Reply #26 - Nov 3rd, 2017 at 1:46am
 
I currently live in Omaha, Nebraska and actually came across this site several years ago just before my CH went into remission. I was initially diagnosed in Amarillo, Texas about 15 tears ago by a neurologist who actually knew quite a bit about CH. My headaches had started a few weeks before when visiting my older children.  Like many shocking events in our lives I remember every detail. I had finally seen a neurologist convinced that the headaches were the result of a brain tumor of some kind. Years before my first CH I'd had extensive back surgery replacing most of my lower back and was convinced it was the worst pain I'd ever suffered until I encountered my first CH.

In my case I was fortunate that I only had a few attacks a week all at midnight from August through Spring. After moving to Omaha they went into remission for a year and when they came back were easily delt with using imitrex. This new cycle however started in late October and went till Summer. I also had some occipital nerve blocks to deal with my constant shadow headaches which helped. I only learned about oxygen about 4 years ago just before I went into remission and found it highly effective. That's when I first learned that some have to deal multiple attacks a day which seemed unfathomable to me at the time. Once my CH disappeared I packed up my imitrex supply and buried my oxygen in a closet thinking I was somehow cured. Life has been great.

I was quite certain that after nearly 4 years with a single CH that I'd never have to deal with them again. Then suddenly last week one night just before bed time I felt the familiar pain creeping up my jaw and settling behind my right eye. It took me a few minutes before I allowed myself to accept that the monster had returned.  By the time I was able to locate my boxed up imitrex I was almost too incoherent to remember how to use the injection. True to form the imitrex did it's magic and I collapsed into bed exhausted thinking that was it for now but I was shocked into reality when it came back harder in only a few hours. Over the next 24 hours I had several more attacks even during the day. Since then it has become a nightmare. I supplied myself with plenty of oxygen and got more imitrex but the attacks became more frequent which has made it impossible to go to work as I'm tied to my oxygen since I can only use imitrex twice in a 24 hour period.

During this time my doctor has been very accommodating and ensuring I had all the oxygen and imitrex I needed but I was beginning to panic a bit as I couldn't sleep or do much of anything other than trying to survive the next attack which were now coming almost every 2 hours. I finally just showed up at my doctor's without an appointment mainly out of desperation asking for help in dealing with my out of control attacks. He contacted a team of neurologists and they suggested he put me on a high dose of verapamil. This initially replaced my attacks with a constant migraine level headache which is rather mild by comparison. I was able to sleep last night for the first time since this recent nightmare started and woke without any headaches. It's still to early to tell if this will last for any time and I can feel the beast lurking in the back of my head but thankfully I haven't had a CH in almost 24 hours. 

One of the big lessons I've learned through all this is that CH may subside but it's never gone and it's always best to get and stay prepared for the eventual return. It's of course much too early to say how effective this new rx may be but I'm definitely open to any and all suggestions on how to cope with constant attacks and resultant shadows. 

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Peter510
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Re: First Timers!
Reply #27 - Nov 4th, 2017 at 7:26pm
 
Welcome to CH.com stg,

Sorry you had to find us, but very glad you did. A break from the beast of some years is not that uncommon and it always catches the sufferer by surprise.

It is a testament to the psychological effect the extreme pain has on us that nearly all those who feel the beast stirring after a break of years, recognise the symptoms immediately.

Please read the following link. It has been a game changer for over 80% of those of us who use it and a life saver for† many, myself included.

Then come back with questions. Also, print a copy for your Doctor to read. It is good for general health as well as CH.

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

Best,

Peter.
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Taylor Mc
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Re: First Timers!
Reply #28 - Nov 11th, 2017 at 11:36am
 
Well this would be my 3rd ch episodic time. I always end up with no insurance at the time. So the only info and help I can get is online. I have never been diagnosed and have always just fought through or went to the ER with little results normally just meds to take for migraines. Looking for alternatives.
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Peter510
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Don't give out... But
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Re: First Timers!
Reply #29 - Nov 11th, 2017 at 7:07pm
 
Taylor,

Welcome. Sorry you had to find us. Glad you did.

The first advice is usually to suggest you work with a Neurologist who specialises in Primary Headaches, but if Iím reading between the lines correctly, thatís not an option at the moment.

In the absence of that, please do our Cluster quiz, on the top left of this page, 3rd tab down. This will give you some indication of whether you have Clusters, or something else.

The problem is, that there is a number of Primary Headache conditions, each requiring different treatments. Their symptoms mimic each other to the untrained eye.

A lot of CH sufferers are using the D3 Regimen with significant success. It requires no prescribed drugs and is generally good for your health.

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

Read and come back with questions.

Just to repeat, the most appropriate first stage is to get a formal diagnosis.

Keep us updated. Thereís a lot of wisdom here.

Peter.
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You don't stop laughing because you grow old....You grow old because you stop laughing.
 
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stg1
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Re: First Timers!
Reply #30 - Nov 13th, 2017 at 10:01am
 
Peter,
I appreciate the link and I'll be pouring over this info as well as the many articles passed onto me in the CH zip file. I'm encouraged that OCT vitamins like d3 can be so effective.  I found some that my wife has and started piping them as suggested.  Apparently they need a little while to start working and I'll be glad to share my results.

Thanks for your help and concern!
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