Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Pages: 1 2 3 4 ... 9
Send Topic Print
To the newbies (Read 86083 times)
RaymondA
CH.com Newbie
*
Offline


Thanks for the support!


Posts: 5
Southern Vermont / Western MA
Gender: male
Re: To the newbies
Reply #25 - Oct 2nd, 2008 at 2:09pm
 
Thank you for this.  It's so validating and comforting to read posts like this and know I am not alone.

I've been away from here for 6 years.  I guess I'm fortunate since I was CH free during that time. 

I just got back (to VT) from AZ after achieving a dream of mine and hiking the Grand Canyon from North Rim to South Rim.  However, my joy was stopped short when I emerged from the canyon and within a couple of hours experienced the most horrific CH ever.

Took an ambulance to the ER 80 miles away in Flagstaff and was treated with Oxygen and prednisone.  Prednisone seemed to lick this in the past but now it seems different and less willing to go away.  I just started coming off of Pred. and my does is 1/2 and I had another two CH attacks during the early morning hours (1-3) pain.  I'm so scared.  I'm not strong enough to handle this I think.  The pain is so intense.  I'm 43 and find I'm sobbing like a baby when I think of this occurring and having to go through this again.  It's hard to make people and coworkers understand. 

I'm rambling a bit now - I think I just need to get this off my chest.  I want to try anything and everything to make this stop and to help halt attacks so I am open to anyone who can offer insights and hope for me.  Thanks for reading/listening.  - Ray
Back to top
  
 
IP Logged
 
MPMIII
CH.com Veteran
***
Offline




Posts: 112
Alabama
Gender: male
Re: To the newbies
Reply #26 - Oct 2nd, 2008 at 2:14pm
 
Ray,

Hang in there.  Lot's of god support here on the boards.  Are you seeing a neuro? Get some oxygen with a good non-rebreather.  Don't let the beast get you down.  You will survive and be stronger for it.   Wishing you pain free time.

Regards,

Malcom
Back to top
  
 
IP Logged
 
j.s.
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 5
lehigh acres fl
Gender: male
Re: To the newbies
Reply #27 - Oct 2nd, 2008 at 8:18pm
 
the whole support group thing is verey new for me but Iv had ch now for 15 years. i just found this site this morning. I was starting to think i was alone or insane. I'v broken an arm a leg, several fingers,and had at least 12 major surgerys for things other than ch and ch is the most intense pain Iv ever felt. I havent shed a tear in 20 years for anything. when I found this site this morning I cried allday, Im so glad i found this place because i need help. I should go, the beast as you call it will be here sometime tonight.                                                                                                                                                                                                             sincerly J.S                p.s.God bless you all                            
Back to top
  
 
IP Logged
 
Gozer
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
Re: To the newbies
Reply #28 - Oct 19th, 2008 at 7:47pm
 
Hello to all.  My name is Doug and i started getting CH around the age of 20-21 while I was a roofer.  They started off as not being so bad, just thought I was starting to get headaches because of being out in the sun so much.  The years past i found a new job but my episodes got worse.  They got to the point where they where so bad that I would just leave my job and drive home to cry and pace around my house.

I have become a coffee addict.  When i was 24 i finally got diagnosed with a migraine and was given Imitrex to help kill the migraines.

After 4 years of shelling out hundreds of dollars over the course of an attack I went to see a new doctor.  Now, finally at 28 years old I have been diagnosed with CH.  My doctor brought up CH on the internet and everything fit... the stabbing pain, the pacing,  the tears, the snot, the attack periods,  everything.  It feels good to finally know what is really going on.

I am entering week 4 of my episode (it usually strikes around September-October and lasts around two months).  I am so glad I found a place with other people that know the hell that I am going through.  I have felt for so long like I have no one who understands the severity of this condition.  

I have my first Neurologist appointment in 2 weeks.  i feel lucky, i live around Hershey PA and the Hershey medical Center has a Severe headache Clinic.  I hope to start getting the help that I so desperately need and want.  Thanks for listening.  I hope to get to know you all.  Here is to my first 7 years of fighting the Beast.  Cheers,
-Doug
Back to top
  
 
IP Logged
 
PainedInRI
CH.com Newbie
*
Offline


I do what the yard gnomes
tell me to do!


Posts: 1
Little Rhody
Gender: male
Re: To the newbies
Reply #29 - Oct 31st, 2008 at 3:13pm
 
Hello all you happy people,
     First off, this is the most amazing site ever, and yes, I might have even shed a tear right here at work the first day reading through it. Its the first time i have ever in my 9 years of being a Clusterhead to have the pleasure of knowing I'm not alone with my nightly beast.
    At first, much like most of you, I was told it was a migraine, then sinus headaches. Then, of all people, my kids Ped doctor suggested CH. Since then I have  pretty much just dealt with the beast on my own. Well, cant say that, my loving wife has been more than supportive. Untill this year's clusters. Wifey dragged me kicking and screaming to the Doc's office for treatment. Never been much of a lets go to the doctors office kind of person since all the doctor's I've seen in the past really didnt know what I was going through. Well, that brings me here to this wonderful community. Its a pleasure to be here amongst understanding friends. I'm not much of a poster, but I will be here in the shadows.
                                                       Chris
Back to top
  

A smart person learns from their mistakes, but a wise person learns from the mistakes of the ones around them.  
tzimise  
IP Logged
 
Mikey K.
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Re: To the newbies
Reply #30 - Dec 3rd, 2008 at 4:00pm
 
Jen,

I'm a newbie and you are the first post I read.  I hate to say this but it brought a tear to my eye knowing that there are people that understand.  You put everything so perfect, thanks. I hope to find out what works for me.  I've had them for 7-8 years but it has been the worst ever.  Going to see a neurologist tomorrow, hoping to try something new like oxygen.  Talk to you soon hopefully...

Mike
Back to top
  
 
IP Logged
 
nancyk
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 9
Re: To the newbies
Reply #31 - Dec 10th, 2008 at 1:06pm
 
I am new to this board and happy to have found a place for support and information.  I have had ch for 40 years...certainly thought I would have outgrown them by now.  I am on week 3 of this cluster after being free of ch for over 3 years.  Three years ago acupuncture did the trick for me, but I'm having no success this time.  Do you find that there is a benefit in seeing a neurologist over a family doc?
Nancy
Back to top
  
 
IP Logged
 
Shannon0601
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 14
Littlestown Pa
Gender: female
Re: To the newbies
Reply #32 - Dec 12th, 2008 at 8:59pm
 
I've gotten alot of iformation from this site in the past but never really took the time to talk to anyone about my "condition". I'm not so afraid to talk about it anymore, instead of feeling sorry for myself I'm more pissed at the fact that I have to suffer but more informed then before. I am on my 5th round of this crap about 2 weeks in.I finally know what works for me but still fun dealing with the insurance companies to get my med's..I've noticed alot of family and friends are very supportive and although I wouldn't wish this on my worst enemy it's nice to know that there are other people out there that actually do understand..I'm Shannon by the way I'm 31 and live in Pennsylvania and I think you are all God sent
Back to top
  
shay0601  
IP Logged
 
lwkreu
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Re: To the newbies
Reply #33 - Dec 19th, 2008 at 12:38am
 
I have suffered from CH for 18 years (at least) and was diagnosed for CH only 6 years ago.  I have had terrible headaches since elementary school. Not knowing is the greatest pain. CH.com has taught me, what my disease is, how to cope with it and, how to find treatment. For years, doctors treated me for migraines but, I don't suffer from migraines therefore, I found no relief. Finally, I started my own research and found CH.com.

Now I know more about my situation than my neurologist does. Find a good neurologist with an ample sample closest. Imitrex, Frova, Maxalt, Oxygen, can be obtained for free or discount prices. Asking your doctor to submit a standing order to the hospital for Imitrex injections will be a less expensive alternative to costly ER visits. Make sure that your neurologist sends a letter to your insurance company explaining your dosage/usage needs. Get prescriptions for more than one "drug".

Keep in mind, they don't last forever. As I get older. the headaches become less frequent. The more headaches I have, the more I learn about them. They will not kill you, it only feels that way. People love you and will hold your hand through it (even if you don't want them to). Everyone around you feels your pain (sort of). No matter how much you cuss, who you cuss or, what you cuss about... your family, friends, and God love you.
Back to top
  
 
IP Logged
 
Methaneman
CH.com Newbie
*
Offline


I love YaBB 1G - SP1!


Posts: 1
x0|Westfield|USA||0|0|MA,Massachusetts
Re: To the newbies
Reply #34 - Dec 21st, 2008 at 10:16pm
 
Hi All,
I have been a member for awhile. I've read every article on here, and smile at most and shook my head yes many times. I am not the only one. I am a 32 year old male, married 2kids, one boy, one girl. When I was about 13 years old I started having headaches, they were so bad I would hit walls, bang my head on tables and finally pass out in a seizure like attack. I had many ambulance rides to hospitals. I was given spinal taps. Ofcourse nothing was wrong. At the age of 18 I joined the military(Navy) I had to lie about my headaches. Something happened at bootcamp no more headaches. I should probably mention both my parents smoked cigarettes at the time. I beleive they are one of my triggers. I made it through 3 years where I don't recall having migraines. I was also very fit and in great physical shape. When around certain smells, cigarettes, strong perfumes, antfreeze, I can almost feel them coming on. I suffered many years not knowing what was going on. I learned to cope by going outside in extremely cold weather, I also like to put a hairdryer to my head. About 6 months I changed my primary care, I explained to the new doctor my symptons, She immediatly knew it was CH. She gave me forms to read, I literally cried. That night I found this website. I now have Imitrex in a 50mg pill form. My insurance allows me 6 pills a month, last months I needed 7. I had a massive headache that lasted for 24hours but did not become a CH until taking some over the counter medicines. I ended up passing out and having a seizurelike attach, all this in front of my 3 year old son, if they would have only allowed me one more pill I would have made it through the day. I did end up going to the hospital, I was giving a 50mg pill on Imitrex, 2 hours later gone. I pay over $600 a month in health ins and my co pays another $900 a month. I was giving today 9 pills of sumatriptan. I took one tonight. I believe my headaches are some how related to my eyesite, if I watch too much tv or if I am on the internet too long, I can't go to a movie theatre. In all these cases my head hurts but does not turn CH until I go to bed.
I know this is alot of info I should have put in multiple post but this feels good somehow.
Good night
Chris
Back to top
  
 
IP Logged
 
Clusterhead
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 6
Portland, OR
Gender: male
Re: To the newbies
Reply #35 - Dec 29th, 2008 at 7:35pm
 
I want to thank you and all the members because you guys have got me through the last couple of weeks. Grin
Back to top
  
 
IP Logged
 
thebbz
Ex Member



Re: To the newbies
Reply #36 - Dec 29th, 2008 at 7:41pm
 
This site is a real respite for anyone fighting CH. I have to to thank all of the members here myself. AGAIN. Kiss Kiss Kiss Kiss Glad you made it here Clusterhead.
the bb
Back to top
  
 
IP Logged
 
hulahoop
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
UK
Gender: female
Re: To the newbies
Reply #37 - Dec 30th, 2008 at 7:23am
 
Hello All
just wanted to say hello and I also am so glad to have found this site.
Reading EVERYTHING at the moment, I am trying to understand what a shadow feels like as I think thats where I am at the moment. Can anyone tell me does a shadow come before an episode or after, Ive had some niggling stuff over xmas and am feeling Im going in for full throttle.

Brief History
Diagnosed with CH March 2008, 47 years old, Prescribed Indo which I dont think is helping, want to ask for Topomax as have read good things about it also as am also a Migraine sufferer, but there really is not comparison to CH's.

Still seeking the answers and off to buy some strong coffee and red bull this pm as this was the first I had heard about this.

Great site and hope to get to know you all over 2009 x
Back to top
  
 
IP Logged
 
Gail
CH.com Newbie
*
Offline


Phillipians 4:13


Posts: 5
Raleigh, NC
Gender: female
Re: To the newbies
Reply #38 - Jan 2nd, 2009 at 6:59pm
 
Hi all,

I, too, am a cluster headache sufferer  Cry.   Mine started at the age of 19, were episodic, and at this point, at the age of 34, they have become chronic.  I've been in a cycle, off and on, for two years.  Whenever I'd decrease the Verapamil, the beast would return.  

Unfortunately, xmas-eve turned out to be the beginning of the next full-blown cycle. Thankfully, I was home visiting my family when they started; they have been a god-send.  My doc called in a prednisone pack,, which ended Wednesday.  By Wed. night they kicked in heavily, 5 within 30 hours, so I ended up at the ER yesterday.  The doc there gave me another pack so hopefully, this will be enough to get me to my neuro. appt. Jan. 7th.  My neuro. also called in Lithium today but not sure what other preventative to use, since verapamil stopped working.  Any suggestions from fellow clusterheades would be helpful.

I used to have them timed and knew that they would end at least 3 months after they started.  The "not-knowing" of when they will end is driving me bananas.  Has anyone gone from episodic, to chronic and back again?  Or, has anyone had a chronic cycle finally end?  Any advice you can give would be great.

Thanks for this site.  My mom is able to sit by me and attempt to rub my neck when my headaches hit but no dad can handle watching their little girl bang their head and scream.  So yesterday, my dad spent all day researching, looking for ways to "fix" this problem and came across your website(thanks dj for facilitating this).   I think he now knows more solutions to these horrifying headaches than I do.  He's read so many posts, articles, links, etc. that have been extremely helpful.  So, thank you to those who share themselves, their experiences and their treatments.  You have brought a wealth of knowledge into our home.    

God bless,
Gail  
Back to top
  
 
IP Logged
 
Deb B
CH.com Newbie
*
Offline


That's what I'm talking
about.


Posts: 14
South Carolina
Gender: female
Re: To the newbies
Reply #39 - Jan 3rd, 2009 at 9:36pm
 
Thank you for this sight but I am concerned that this is going to continue to be a very long road.  I suffered years ago without any treatment and they just went away.  Now it is back...almost daily, several times a day.  I take Topamax, Verapamil for preventing which is not working.  Then when it begins Axert and phenergan.  I see my PCP tomorrow.. I hope for a referral to a neuro...
Back to top
  
 
IP Logged
 
Mosaicwench
CH.com Sponsor
***
Offline


www.mosaicwench.com


Posts: 3507
Near Milwaukee WI, USA
Gender: female
Re: To the newbies
Reply #40 - Jan 3rd, 2009 at 11:04pm
 
Hi all - I'm a supporter and not only do I support my hubby of 26 years in his fight with the beast, I try my hardest to support all of you.

Whether you're brand new to the war or an old vet, we're here for you.  There is a huge wealth of knowledge amongst the sufferers here.  Pick their brains and please please please, if there's a meet & greet in your area, summon the courage to attend.  You'll truly feel like you've found a family you never knew you had.

Great post Jen! (She's the BEST, for those of you who haven't met her.  A boatload of wallup packed into a lovely little package)
Back to top
  

“Be regular and orderly in your life, so that you may be violent and original in your work.”
~Flaubert
WWW http://www.facebook.com/home.php?id=1240423960&ref Mosaicwench  
IP Logged
 
Mosaicwench
CH.com Sponsor
***
Offline


www.mosaicwench.com


Posts: 3507
Near Milwaukee WI, USA
Gender: female
Re: To the newbies
Reply #41 - Jan 3rd, 2009 at 11:07pm
 
Deb B wrote on Jan 3rd, 2009 at 9:36pm:
Thank you for this sight but I am concerned that this is going to continue to be a very long road.  I suffered years ago without any treatment and they just went away.  Now it is back...almost daily, several times a day.  I take Topamax, Verapamil for preventing which is not working.  Then when it begins Axert and phenergan.  I see my PCP tomorrow.. I hope for a referral to a neuro...


Deb - start a thread all it's own on the "getting to know ya" board and include all the above information.  I'd not want your post to get ignored in this thread.  You'll be thrilled with the arsenal of help that will arrive!
Back to top
  

“Be regular and orderly in your life, so that you may be violent and original in your work.”
~Flaubert
WWW http://www.facebook.com/home.php?id=1240423960&ref Mosaicwench  
IP Logged
 
annakomda
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Denmark
Gender: female
Re: To the newbies
Reply #42 - Jan 15th, 2009 at 9:36am
 
OMG! I AM HOME!!!
Back to top
  
annakomda  
IP Logged
 
nimrodson
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 15
Dallas, TX
Gender: male
Re: To the newbies
Reply #43 - Jan 15th, 2009 at 1:22pm
 
Hi All,
I thought the brutal headaches i was having were just REALLY bad migranes. The earliest memory i have of getting these headaches was about 10 years ago....they would come on real fast and drop me to my knees everyday for a few months and then would disapear for a couple of years. I thought it humorous that people here call them "the beast" since that is how I used to refer to them. I haven't been receiveing any treatment as of yet but I have my first appointment with my neurologist next week. Hopefully he will be understanding. There seems to be a TON of info available here. If this cycle doesn't end soon i may go insane. Are there any over the counter drugs that even remotely knock a dent in these things? So far nothing I do works....all I can do is wait them out.
Back to top
  
 
IP Logged
 
gizmo
CH.com Hall of Famer
*****
Offline




Posts: 522
Germany
Gender: male
Re: To the newbies
Reply #44 - Jan 15th, 2009 at 1:31pm
 
Welcome Nimrodson,

there aren't any OTC pain killers that really help but there are other things you can try.
An energy drink at the first sign of a hit can abort the hit or at least lessen the intensity. Strong coffee helps too.
Then there's cold or hot showers and ice packs.
If your hits occur mostly during the night you can try melatonin, ~9mg before going to bed.

Oliver
Back to top
  
 
IP Logged
 
nimrodson
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 15
Dallas, TX
Gender: male
Re: To the newbies
Reply #45 - Jan 15th, 2009 at 1:41pm
 
Well i know i used to get really bad migranes when i was a kid (nothing compared to this pain though) and hot showers were really the only thing that helped. Maybe i will try that while drinking a monster with an expresso chaser. What is melatonin? Vitamin...herbal? Sorry i'm not a big pill person so i don't know what that is. I hate taking meds.
Back to top
  
 
IP Logged
 
gizmo
CH.com Hall of Famer
*****
Offline




Posts: 522
Germany
Gender: male
Re: To the newbies
Reply #46 - Jan 15th, 2009 at 1:47pm
 
Melatonin is a hormone. You can get it as an OTC supply / addon in the US.
Back to top
  
 
IP Logged
 
nimrodson
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 15
Dallas, TX
Gender: male
Re: To the newbies
Reply #47 - Jan 15th, 2009 at 1:58pm
 
When you are having a cycle do you feel run down all day long. Not really tired but just out of energy? I know that i can tell when one is about to come on, usually at night, but this is different. Call it the shadow i guess, but it seems to "shadow" me all day long. does that make sense?
Back to top
  
 
IP Logged
 
gizmo
CH.com Hall of Famer
*****
Offline




Posts: 522
Germany
Gender: male
Re: To the newbies
Reply #48 - Jan 15th, 2009 at 2:45pm
 
Yes, that makes sense.
Shadows lasting all day long (when not treated with O2 or other abortives) are pretty "normal" (let's try and define normal with CH Wink ).

Oliver
Back to top
  
 
IP Logged
 
nimrodson
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 15
Dallas, TX
Gender: male
Re: To the newbies
Reply #49 - Jan 15th, 2009 at 3:26pm
 
yeah no kidding. Nothing normal in our world. I think my CH's are morphing into somthing new. i don't recall ever having a cycle this long or painful. They have been switching sides and some days i don't get them adn some days i get two or three. I hope that's not a bad sign.
Back to top
  
 
IP Logged
 
Pages: 1 2 3 4 ... 9
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!