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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New Here
        
(Message started by: bellarains on Apr 12^th, 2005, 3:29pm)

Title: New Here
Post by bellarains on Apr 12^th, 2005, 3:29pm

Hi,

I have just recently been diagnosed with cluster headaches. I have had these headaches since my early 20's and have been told I have migraines for years and have been given everything from Furinol to Demerol. My episodes usually lasted anywhere from 3-5 days but in the last few years lasted from 2-5 weeks(I am now 40). This year however they hung around for 8 weeks and were becoming more frequent and more severe. I was having 2-3 events a day, and was becoming a real basket case, I finally seeked a Neurologist. They ran me through all the same tests, CT, Blood work, MRI, etc.... All clear. I then went on the Prednisone dose pack, helped some, but headaches came back with a vengence. Then we tried Imitrex pill form, some relief, but not much. Relpax, helped during the daytime???? Not sure, but no help for those murdurous night stabbers. Then...... That miracle or all miracles, the Imitrex injections. Ahhhhh, finally, some relief. Still, I was having 2-3 episodes a night, and only 2 injections allowed. They then gave me Lortab for those times when I had reached my max of injections. I was going from day to day feeling like a whipped puppy on its last leg. They finally put me on Topamax. I have been taking this for almost two weeks now. I also read here about drinking lots of water helping, and I have to say that this has done wonders for me. I can be suffering and turn up a bottle of water and can get some relief if not totally take it away at least for a few minutes, so I thank you very much for that information. I am just beginning to maintain a little better and am having only moderate headaches(cross fingers for PFD&N).

Sorry to go on and on, but like everyone here I'm sure my story is similar to your own and am so glad to have found a place where people can relate to the horror and pain I live with. I look forward to any and all suggestions on how to live with this in the best way possible. Also I am interested in what vitamin supplements are good to take, as I know the meds are wiping me out.

Lori

Title: Re: New Here
Post by samsara on Apr 12^th, 2005, 3:44pm

Welcome welcome from another newbie... I just started making this forum a regular part of my life too. What a great place, what a huge relief to be able to talk to others that understand!!

Sorry your hurting, but glad you found this place too. It has dome wonders for me just knowing there is a support group out there.

Here's to pf days and nights (raises a glass of water)*clink*

Title: Re: New Here
Post by miapet on Apr 12^th, 2005, 5:12pm

Sorry you're getting slammed . . . sounds like they are trying all the drugs on you! Have you tried oxygen? It's the least invasive and it works great as an abortive for a large amount of ch-ers . . .you need a highflow (15 lpm) and a non-rebreather mask is best . . .there's an info tab on o2 . . you might want to look at it . .
*positive light and energy*
miapet

Title: Re: New Here
Post by maffumatt on Apr 12^th, 2005, 5:15pm

Welcome to the Club, you will find that just reading the posts here helps. I think just the knowledge that there are others that share your experiances and pain will help you. This is a fine community of people, and a close one. Read, read, read, I think since I have found this site I have read every post all the way back to 1999. I have learned more from this community than I have from any doctor. Be proactive in your treatment, and if nothing else GET Oxygen. For alot of us it is the most effective abortive. Pressure your doctor for a perscription if you have to. I did, and it was one of the best decisions I have ever made.

Matthew

Title: Re: New Here
Post by TBarger on Apr 12^th, 2005, 6:44pm

Hey Lori, sorry that you feel the same pain! I am new to the board, not the pain ;;D Hang in there and just like everyone keeps saying read read read! Hoping you pain free days!

Travis :)

Title: Re: New Here
Post by E-Double on Apr 12^th, 2005, 7:02pm

O2 and investigate the imitrex tip (link to the left)

Title: Re: New Here
Post by bellarains on Apr 12^th, 2005, 8:09pm

Hey Guys,

Thanks. My next appointment is on the 16th and I do intend to inquire about the oxygen. I also read the Imitrex tip and have enlisted the help of my RN neighbor to help me with this and it does help with the rebound headaches a bit, so I will vouch for this, as well as saving money issue. The amount my insurance considers a monthly supply is a joke!!!

I have read quiet a bit and will continue to do so. You guys are all wonderful. I have had these headaches for almost 20 years and am just finding out what they are. Wish I had found you sooner.

TTYL,

Lori

Title: Re: New Here
Post by Kris_in_SJ on Apr 12^th, 2005, 9:01pm

Hi Lori,

Welcome, but sorry you have to be here. There's so much to learn, and we're all one big family (though we can be a little argumentative sometimes).

I have a couple of articles that saved my life when I was first diagnosed that I'd be happy to share. If you'd like them, please PM me with your email address and I'll forward them on to you.

The Imitrex tip is great and O2 is another great, but you really need to be on a preventative of some kind. Once the Pred Pack is gone, you'll be in trouble without prevents. There's also another alternative supplement called Kudzu. You can read about it under "Medications and Treatments." It's a long thread but worth the reading.

PF Wishes and Many Hugs,

Kris

Title: Re: New Here
Post by RichardN on Apr 13^th, 2005, 1:49am

Hi Lori and Welcome

I'm another huge proponent of 02 as abortive (I can't take triptans) and it's my only abortive. You know (we all know) that . . . here comes eye tugging, temple rubbing "oh crap, how bad is this one going to be? feeling. Imagine stopping it there . . .at that stage . . . in 5-10 min. NO DANCE ! If waked with a KIP 3-5, 10-20 min., sitting up, but without getting out of bed. I can deal with the beast if I don't have to dance with the s.o.b..

Verapamil is my preventative and water/water/water.

Don't forget to copy the 02 info and take to your doctor. Don't leave his office without the script. If it works for you, you can save the Imitrex for the ha's the 02 doesn't kill.

Great bunch of people here . . . . who truly know your pain.

Be Safe, PFDANs

Richard

Title: Re: New Here
Post by Redrum on Apr 13^th, 2005, 9:28am

Welcome Lori, sorry your here but glad you found us.

O2 has already been mentioned and I'll just add YES YES YES. O2 has been a lifesaver for me, but its crucial that you do it right. I also suggest you try melatonin for the night hits theres lots of info on it in other threads.

PFDAN ~Andy

Title: Re: New Here
Post by bellarains on Apr 13^th, 2005, 10:14am

Kris,

Please do forward me the articles. I am reading all I can to try and keep these monsters at bay, or at least at a level I can function at. I have always thought I have a high tolerance for pain, but these puppies give a whole new meaning to the word :o.

I have read so much here and I have noticed that no one seems to be on the meds that my Neuroligist has me on. I have been on the Topamax for two weeks now, and while my headaches are starting to decrease I'm not entirely sure it is due to this or to the mass amounts of water,baby asprin,B-12 and Ginko that I have been taking. Any comments? I have not tried the Kadzu, and have just started to read up on it, so this is something else I am going to have to look into. If possible I prefer to treat drug free, so that is what I am looking for. I know there are times I might still need them, but if I can maintain without them, that's what I'm looking to do.

Andy,

I will also read up on Melatonin. So many of these things I am not familiar with. I have been given mostly pain killers over the years, or taken over the counter meds, gone to the ER to get a demerol shot, or basically rode them out till the episode passed. Then again, I've never had one last for 3 months before either. You can live with 3-5 days, maybe even a couple of weeks, but 3 months???? I was pretty sure I was dying :'(

Anyways, off to read more. TTYL.

Lori

Title: Re: New Here
Post by Bionic_Daddy on Apr 14^th, 2005, 1:05am

Hello, I've been chronic for several years. Topamax -400mg helped me for a short time, only if I took it on a strict time schedule. One other issue with Topamax, I lost 40lbs. in 2 monthes & starting having MAJOR pain in my stomach. Went through all the tests ( Upper G.I., Lower G.I. ETC ) & found nothing. Saw my neuro & he asked me about my weight loss. I told him about the stomach pain & he took me off the Topamax. The Topamax has this effect on different people, me being one of them. My neuro told me Topamax is trying to be approved for weight loss. If you start having stomach pain contact your Dr. ASAP. O2 is a life saver, one huge tank next to my bed & 6 little ones for leaving the house.
Good Luck, Bionic Daddy

Title: Re: New Here
Post by kimmeesue on Apr 14^th, 2005, 10:33am

Hi Lori,
I, also, am new to the site but not the demon. Sorry you are struggling.
Melatonin has worked wonders for me and the night hits. Adjust your dose as needed. I started at 5mg. and am up to 9...others take 12. We are all different, as you will find. Not everything works for everyone and some of us can be very opinionated. Take the info in the spirit of love and goodwill in which it is intended.
Best wishes, Kim

Title: Re: New Here
Post by nick on Apr 14^th, 2005, 3:58pm

i have had these headaches for several years now but this time is definitely the worst..ive searched everywhere for anything i can to help, nothing works..this cycle has been going on since st pattys day,and i pray everyday that it ends soon..any of you guys know of anything besides imitrex??(it doesnt work)
thanks

Title: Re: New Here
Post by nani on Apr 14^th, 2005, 7:13pm

Hi nick...there are a number of treatments. Look around the boards here and look at the oxygen info link at left. Take a look at this and the related threads. Read it all, and pay attention to possible meds interactions. It's being tested, but some have found a great deal of relief with it. Good luck and pain free wishes, nani
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362

Title: Re: New Here
Post by nick on Apr 15^th, 2005, 11:10am

nani,thanks for info on oxygen..only problem is my dr. wont go that route for @least another month..he gave me a calcium blocker and a steroid,and of course more imitrex for now.its just frusterating that noone else seems to understand how painful these things are,, im having a hell of a time @ work(i work about 70 hrs. a week) and i think my co workers think im nuts,no one believes i can get 7 or 8 of these s.o.b.s in a day thank goodness i found this site!!!

Title: Re: New Here
Post by nani on Apr 15^th, 2005, 11:27am

Herein lies some of my issues with doctors....he'd rather have you take potentially dangerous steroids than try oxygen. [smiley=huh.gif]
OK...a steroid taper (it should be a taper) while Verapamil kicks in is a common treatment. If oxygen works as an abortive for you, it is far easier on your body than Imitrex. And the kudzu (threads that I gave you links for) can work very well with oxygen.
You could always give your dr the address of this website and have him look at the oxygen and kudzu info.
As for your coworkers....look here, print this out and show them:
http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc
good luck and hang in there, nani

Title: Re: New Here
Post by nick on Apr 15^th, 2005, 5:06pm

nani,ya know thats the big mystery w/most doctors..i dont even want to try to understand them..bet ya dollars to donuts it has alot to do w/$$$ tho

Title: Re: New Here
Post by jokrs2 on Apr 15^th, 2005, 6:28pm

Hi Nick. Welcome aboard. I had it with my doctor and all the pain killers and triptans. Now I just take Kudzu and my doctor doesn't get all those co-pays anymore, in fact I am saving so much money I bought myself a bowflex. I still get hit at least 6 times a day but kips stay fairly low and tolerable. Hang in there. Blessings, Joe

Title: Re: New Here
Post by bellarains on Apr 15^th, 2005, 10:09pm

Hi Nick,

I am fairly new here myself, but it doesn't sound like your doctor has given you any preventative. BTW, are you seeing a Neurologist? Over the years I saw doctor after doctor, went to the ER numerous times and finally saw a Neuro, between them and finally this board I have found the only relief I have had in years.

I am taking Topamax as a preventative, and of course have the Imitrex injections which are a life saver in the middle of the night. I also do not have oxygen, but am asking my Doc about it next Apt. I have Relpax to take if I can catch it in time which works some times, but most times not, but the most helpful thing I do is drink lots and lots of water. I mean I drink between 80-120 ounces of water a day. Got that tip here, and it has been a blessing. My new motto is "Pee or Pain" ;)

I feel for you. I also get between 3-6 hits a day somtimes, and they sure can wipe you out. There's hope though. This board proves it :)

Wishing you PFD&N soon.

Lori

Title: Re: New Here
Post by samsara on Apr 16^th, 2005, 11:01am

Oh nani.. thanks for that link.

Welcome nick.. I'm new here too and this place is great. I cannot believe the wealth of knowledge, I am well armed to go back to my MD and ask for Imitrex and O2 now that I know.

I was on pred to break a cycle once, it worked well but man did it play havoc on my body. Mostly my joints. I am soooooo much more interested in O2 and even Kudzu... altho I haven't had any luck finding it out here and so I may have to order online. (I'm slacking off a bit right now cause I am between cycles and I want to wait to take the kudzu until I start a cycle. )

Anyway, this place is a godsend.... sorry you have to be here but so glad you found it too!! It has made such a difference in my life, I feel much more informed and in control. Welcome! :)