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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> It's Official...They are Back :(
        
(Message started by: stevea on Dec 3^rd, 2005, 1:30pm)

Title: It's Official...They are Back :(
Post by stevea on Dec 3^rd, 2005, 1:30pm

I had attack number two last night after my ten year hiatus. I was at the theater watching a really bad show when it descended. Mercifully, by the time it was over, the peak had already hit and I was able to drive home without shoving my fist into my eye socket to make it home. Maybe bad theater is a potential cure? Doubtful.

Looks like I will be looking for a neuroligist come Monday morning. Anyone from the Baltimore/DC area know of a good one?

Title: Re: It's Official...They are Back :(
Post by unsolved1 on Dec 3^rd, 2005, 1:58pm

A 10 year break! WOW! Thats great! BUt, sorry they're back. Somewhere around here is a list of (sufferer)recommended doctors listed by state. I can't find it now. Maybe someone else can help out.

Hope your cycle is a short one

Goodluck

UNsolved

Title: Re: It's Official...They are Back :(
Post by chewy on Dec 3^rd, 2005, 10:08pm

List of recommeded CH docs by state:

http://www.ouch-us.org/chgeneral/doctors.htm

Title: Re: It's Official...They are Back :(
Post by Jasmyn on Dec 4^th, 2005, 2:23am

Sorry the beast is back but welcome to you and I hope your cycle ends for another 10 years and more.

Title: Re: It's Official...They are Back :(
Post by zwibbs on Dec 4^th, 2005, 2:33am

Start on controlling them, and another 10 years ( great !!!) is on the horizon.

Title: Re: It's Official...They are Back :(
Post by Kate in Oz on Dec 4^th, 2005, 5:45am

Hey Steve,

Sorry to hear they're back! Good luck with finding a doc that knows what you're dealing with and hopefully another 10 yr hiatus will follow.

Wishin you all the best,

Kate

Title: Re: It's Official...They are Back :(
Post by mabus on Dec 4^th, 2005, 11:49am

Steve -

Sorry that uninvited guests have arrived. Long remissions are a blessing, but lure you into thinking that the cycles are over for good. Hopefully this one is a short one for you. Wishing you PFDANs.

Title: Re: It's Official...They are Back :(
Post by sandie99 on Dec 5^th, 2005, 3:12am

Steve,

I'm so sorry to hear that the beast is back... :(
I do hope for a very, very short visit. Hopefully you'll get to see a neuro soon and find meds which work.

Best wishes & lots of PF time,
Sanna

Title: Re: It's Official...They are Back :(
Post by ScottEinDC on Dec 5^th, 2005, 8:51pm

Steve,

What show did you see? I'm in the DC area, sometimes head up to B'more to see shows, I should stay away!

Sorry to hear you're dealing with the CH again. I've not gone to a neurologist yet, but am going for an MRI this week, just preventative, then back to my regular DR and we'll discuss the next step, maybe seeing a neurologist?!

Scott

Title: Re: It's Official...They are Back :(
Post by stevea on Dec 6^th, 2005, 11:09pm

I saw a Holiday show that some friends were in. Don't waste the trip up. Could be CH inducing.

Could not find a Neurologist that could take me during the cycle, so I got some meds I was on way back when from my current doctor who was actually pretty knowledgeable about CH. So I am currently doing Ergotamine tablets as my abortive and Prednisone as my preventive. If I was skating towards a full blown last night (as seems to be the pattern this time around), then the Ergotamine worked. The only thing I did not like about them was how hyper I felt. The abundance of caffeine in them will do that to you. I do have an appointment with a neurologist on the 30th, but they told me to call next week and see if there are any cancellations.

How are you doing? In or out of a cycle right now?

Title: Re: It's Official...They are Back :(
Post by zwibbs/Scott on Dec 7^th, 2005, 1:06am

Hey Steve. I ( for one) have been in a cycle since mid-october. Varying attacks, as I have been watching what I eat, and had two drinks in that time frame--will not have another until I sleep for 3 weeks straight without interuption. The thing that has me down is I started new meds two weeks ago, exactly today, and I am still getting attacks. I have an appointment with my neurologist on the 21st, but I'm totally exhausted, and confused. I know they'll be leaving soon, but wish it was tonight !!!

Title: Re: It's Official...They are Back :(
Post by stevea on Dec 8^th, 2005, 12:44am

Since Mid-October? I NEVER had one last that long. My thoughts go out to you... I think the longest for me was about six weeks. You are looking at almost three months! It hurts my heart to think of anyone suffering that long. The physical pain is one thing. But the emotional pain is the one that still gets me. That constant fear that the band is gonna start playing at full decible just scares the ever loving crap out of me every day. Sometimes just thinking about it, brings the shadow on. I hope your appointment on the 21st with the neuro resolves your pain, my friend. I hope you are able to call and find their is a cancellation that you can step into. Keeping you in my thoughts.

Title: Re: It's Official...They are Back :(
Post by zwibbs/Scott on Dec 8^th, 2005, 1:08am

Thanks Steve. I am up right now with another one. I thought four nights ago that I was winding down, but the past two nights have been rough. Yesterday I think I slept 20 minutes, then I had the residue effect all day. The numbing, stinging on my left side--all damn day. I thought the meds were taking effect, but I have to go see the doctor and go from there. When I exit the cycle, I will be the happiest person, as I'll have my life back.But until then it is one day at a time.....Scott NYC

Title: Re: It's Official...They are Back :(
Post by BarbaraD on Dec 8^th, 2005, 7:24am

Scott, get on some Melatonin! Try about 12mgs at night before bedtime. It takes a while to get in your system, but I swear by it. Gets you thru the REM sleep and at least you'll get some sleep and that helps with the exhaustion. Try it! It gets me thru the days.. (I'm chronic).

Hugs BD

Title: Re: It's Official...They are Back :(
Post by stevea on Dec 8^th, 2005, 8:48am

And I had attack number four last night. Woke up at 4:00am with the band playing nice and loud. Danced in the kitchen until 5:30 and it disappeared. Went to bed, woke up this morning at 7:30 with another one. Now I am in that 'tween stage. Can't tell if another one is coming or I am just going to live with the reverberations all day. No amount of ergotamine is gonna help in the middle of the attack. Can't believe I have to wait until the 30th to see the Neurologist.

This last one felt like the real McCoy. The other three were simply appetizers for this latest feast. In ten years I actually forgot what these things feel like. I am so miserable.

Title: Re: It's Official...They are Back :(
Post by zwibbs/Scott on Dec 8^th, 2005, 10:08am

Thanks for the advise and hugs Barbara. I will go to GNC here in the City. I'll let you know how it works.

Title: Re: It's Official...They are Back :(
Post by zwibbs/Scott on Dec 9^th, 2005, 1:05am

Hey Barbara part deux............I took your advise and bought it yesterday. I feel very good as I slept like a log for 6 hours. I am only up early because they are predicting a snow storm in new york city and I have to get out very early. I work for the major newspapers in ny and we are up early alot. The past couple of nights were rough so I had an appointment with my neuro for the 19th but changed it to the 12th. My God----how wonderful it is to get some sleep. I will never take for granted , the importance of sleep !

Title: Re: It's Official...They are Back :(
Post by cazman on Dec 9^th, 2005, 11:11pm

sorry to hear they are back steve i hope it gose away quick and goes away for another 10 years, keep the faith and hang in there.

Title: Re: It's Official...They are Back :(
Post by stevea on Dec 10^th, 2005, 12:14am

No such luck I am afraid. :( However, attack number five was kept at bay this evening with med's. Here is hoping it doesn't do the old sneak up on me at 4:00am. Then I just have to grimace and bear it. Thanks for the thoughts everyone.