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(Message started by: amen on Nov 6^th, 2003, 2:03pm)

Title: New and overwhelmed
Post by amen on Nov 6^th, 2003, 2:03pm

Hi, I am new to the sight. I have just been diagnosed with CH after about 10 years. I started having them in my early 20's and went through the whole being diagnosed incorrectly ie sinuses, stress, allergies, then I went through a 6 year remission which was wonderful until about 2 weeks ago when I was woke from a dead sleep and thought I was going to die! I knew exactly what it was but it was way more intense than I had ever had in the past. This time the HA have been coming on more frequent, and seem to last longer. My doc sent me for an MRI to rule anything else out. That turned out fine. I am at the beginning stages of trying meds. I have been reading the message board and wonder what I should try first. My HA come about 2-3 a day and usually around bedtime, middle of the night or morning. Never in the middle of the day and always on the right side. My eye turns red and swells and runs. Occasionally I have nausea but not usually. I did get sick this morning when I got to work but I think that was from taking meds on an empty stomach. Any advice would be appreciated.

Title: Re: New and overwhelmed
Post by vig on Nov 6^th, 2003, 2:08pm

Hi Amen,
I'm glad you found us.
You have a lot of studying to do. There's a ton of good information about CH here. We're all learning and sharing so dig in and ask questions and have fun.
Welcome
-p

Title: Re: New and overwhelmed
Post by Tiannia on Nov 6^th, 2003, 2:10pm

Welcome to the site. I know how you feel, there are so many meds. I am currently on Imitrex pills only and Inderal at night. I do not think that the inderal is helping, but I'm kind of scared to stop them if they are. One more month to go and I take my doc my "Headache calander/journal" to show the hows and when of my HA's. Then I have to prove to him that clinical research HAS been done on O2 and the use of it.

I wish you luck, there are lonts of people here with great ideas and advise.

Tia

Title: Re: New and overwhelmed
Post by Roxy on Nov 6^th, 2003, 2:11pm

Did your doctor suggest any type of protocol?

Go click on the 02 button to the left, it's pretty good stuff. Verapamil and trex are standard favorites too. There are also lots of natural treatments that can help to hold you over till you find a medication program that will help you. READ, READ, READ....... ;;D

Sorry they are back for you, and I hope you will find something that will help.

PFDAN,
Tracey

Title: Re: New and overwhelmed
Post by aprilbee on Nov 6^th, 2003, 2:11pm

Hi Amen, welcome, sorry you had to find us, but you have found the best support group on the planet!!

I take Neurontin as a preventative, some people can't take it, but it stopped my cycle dead in its tracks, I'm an eposodic and my cycle was shortened by a month, you might give it a shot, I also have taken Relpax which works good and Lortab for shadows, Lortab can cause rebounds so I don't use it for major hits, just those ones during the day that don't do much more than annoy...

Research all of the links on the left and inform yourself, that's the best thing to do!! I hope you can find some answers and you have pain free days and nights soon!

April

Title: Re: New and overwhelmed
Post by thomas on Nov 6^th, 2003, 2:13pm

This worked for me this time - 20 min hot steamy shower 30 min before bed 3-6mg of melatonin 45 mins before bed, 20mg prosac in the am 150mg magnesium in the am, 150mg calcium. Repeat daily. read the archives and the posts, join OUCH and welcome aboad.

Title: Re: New and overwhelmed
Post by samurai on Nov 6^th, 2003, 2:29pm

Welcome!
I also just recently discovered this site and it has become a second home. The people here understand! There is a lot of information and a lot of options for treatment. The best part is the emotional support. We're here for each other. We're here for you!
Jason

Title: Re: New and overwhelmed
Post by Mark C on Nov 6^th, 2003, 2:30pm

Howdy,
Sorry you need us, but glad you are here. I will post some links to get you started on your CH PHD! Knowledge is power and there is a lot to learn and an increadible amount of human experience here.
http://www.animationlibrary.com/Animation11/Words/Welcome_Signs/glitering_sign.gif
Look
here (http://www.clusterheadaches.org/)
here (http://www.clusterheadaches.org/medications.htm)
here (http://www.clusterheadaches.org/library/general/index.htm)
and last but one of my Favorites
here (http://www.clusterbusters.com/)

Good Luck and Welcome again!
http://www.drfeller.com/Mark/mark.gif

Title: Re: New and overwhelmed
Post by taraann on Nov 6^th, 2003, 3:34pm

SOrry you have this HELL but glad you found us! Tons of support, understanding and INFO! So read read read all the buttons on the left, search the archives (Mark has given you a great start) and ask any questions and VENT as needed! Welcome Aboard

Title: Re: New and overwhelmed
Post by amen on Nov 6^th, 2003, 3:55pm

Thanks for all of the responses. I am not sure that my Dr. is very familar with CH. He first put me on vicadin. No relief. He gave me some samples of Immitrex and another sample of something similar to Immitrex. No relief. Today we are going to try verapamil. We shall see. I start getting anxious in the evenings, just knowing whats coming. My husband gets frustrated because he can't help me. My 4 children have been handling it pretty well but I feel bad for them.

Title: Re: New and overwhelmed
Post by BobG on Nov 6^th, 2003, 4:24pm

Was the Imitrex in swallow, snort or inject form?

Don't expect immediate relief with the verapamil. It takes 10 days - 2 weeks to build up in your system.

But, you already knew that didn't you?

Good luck. Hopes it works for you.

Title: Re: New and overwhelmed
Post by Charlie on Nov 6^th, 2003, 4:34pm

Welcome to our painful end of the spectrum. You'll find pages and pages of good ideas and some interesting ways to deal with this horror. I've been in a 12 year remission but I cannot wipe my memory of the pain. It seems like yesterday.

Your description of your attacks is very much like mine although I usually had 4 or 5 a day. You'll find that almost all of us get them not long after falling asleep and then are awakened and want to kill something. For me this is a sure sign of CH. It can may one dread sleep.

The only drug I used was Inderal which hasn't been effective for many here but it worked for me. Since I was episodic and not very bright, I took it only after the attacks began and thus suffered for several days before I got at least partial relief. It helped me most of the time and after a few weeks, I'd taper off until the next visit from this horror. There are no over the counter painkillers that have any effect on cluster headaches and they’re slow in any event. Narcotics aren’t very helpful either and not a good idea anyway.

Although it needs a rewrite, here is another thing that worked very well for me:

http://www.netsync.net/users/charlies/

It may seem odd but it works. I kid you not.

Good luck, stick around, feel free to rant away and let us know how you're doing.

Charlie

Title: Re: New and overwhelmed
Post by Lori on Nov 6^th, 2003, 10:34pm

Hi Amen,
Hope you get relief very soon with the verapamil. Just read as much as you can here. Especially the medicine board here. You'll learn alot. Hope you read the info on the left on oxygen (print for doctor) and don't give up! keep us updated on how you are doing, ok? Be sure to go to the OUCH site and join too. There is so much info there and the only organization doing something to change things for sufferers.

Take care!

Title: Re: New and overwhelmed
Post by TxBasslady on Nov 6^th, 2003, 10:58pm

:)
Hi Amen,
Welcome to the board.

You have certainly come to the right place for good advice and hopefully some useful information.

My dr put me on a Prednisone taper for 2 weeks. That was 58 days ago, and I have been pf ever since.

I sure hope you find what you need, to keep the beast at bay.

Sending you pf vibes from Texas :)

Jean

Title: Re: New and overwhelmed
Post by drnoe on Nov 6^th, 2003, 11:07pm

Overwhelmed is about right, yeah?
I see above so much loving advice that I can't think of anything to add cept this;
The worst thing for me bout CH is it's in my head and I can't disassociate from it like another part of my body. It IS in our mind and that is where we need our first line of defense.
One of the (many) great things bout this place is how normal we can feel.
It's what we go through that's crazy, not us.
Takes a lot of hands to prop up this much reality,
welcome aboard
Dan

Title: Re: New and overwhelmed
Post by cootie on Nov 6^th, 2003, 11:23pm

Hi amen........hope ya find sumthin that works for ya soon.........ok I think it's here I tell ya ta grab an oar and row with the rest of us ! Pam a supporter that also can't take neurontin or Paxil (they be BAD)

Title: Re: New and overwhelmed
Post by Patrick_A on Nov 7^th, 2003, 12:16am

Hello amen. Sorry about your troubles, but welcome to "THe House of Pain".
Somebody here will have answers for you, all you gotta do is ask.
I am amazed that Imitrex didn't work for you.
Prednisone and Verapamil halted my cycle in its tracks. I have now been pain free for 2 months!

Patrick

Title: Re: New and overwhelmed
Post by Woobie on Nov 7^th, 2003, 1:52am

Welcome !!

Nothing to add - just wanted to say Hello!

Peace out
Tina

Title: Re: New and overwhelmed
Post by K. on Nov 7^th, 2003, 2:19am

Welcome,

Sorry you're in pain but you'll find lots of support here. Verapamil, O2 and imitrex is what works for me.

Hope you're PF soon!

K.

Title: Re: New and overwhelmed
Post by amen on Nov 7^th, 2003, 3:29pm

Well I was wrong about the verapiml. It was fiorinal. He prescribed 2 every 4 hours. The pharmacist said that was alot and that I should start with one and if that doesn't work, then take another. Well I took one last night and just kept watching the clock as I put my 4 kids to bed 1 by 1. By 11:30 I was sleeping like a baby and never woke up (cept when my 4 year old came in cause she had a bad dream) until my alarm went off. I felt the morning beast coming on as usual and took another fiorinal. I could still feel it getting stronger so after an hour I took another. It never went past a 2 or 3 and I was able to get all the kids off without trying to crush my skull in the meantime. My night time Ha is usually about a 9 and last for about and hour. My morning usually last for about 3 hours and peaks at a nine for about an hour but hangs around a 6-7 the rest of the time. So I am very exticed about a 2-3. What's even better is that after that usual eve/morn ritual, I am toast for the rest of the day because the beast just seems to take everything out of me. Today I feel great! I just hope it continues to work and my cycle ends soon. Hopefully then I can enjoy another 6 pf years. If not- I am glad I found this site because I have always felt like no-one understood. (cept my dad cause he gets them too) I'll be sure to tell him about you guys!

Title: Re: New and overwhelmed
Post by Prense on Nov 7^th, 2003, 6:47pm

on 11/07/03 at 15:29:27, amen wrote:

Well I was wrong about the verapiml. It was fiorinal.

http://www.rxlist.com/cgi/generic/butalcod_ids.htm
Butalbital compound with Codeine is indicated for the relief of the symptom complex of tension (or muscle contraction) headache.

Additionally, it can be habit forming.

I am glad it seems to be working for you...for me, it did jack. Personally, I would not be visiting a doc that was prescribing narcotics for CH.

From a patient's point of view...we want relief and we want it fast. Docs should be aiming to reduce the frequency/severity/duration of CH in addition to offering us relief from individual attacks. I see no preventative here.

Chris

Title: Re: New and overwhelmed
Post by Ree on Nov 7^th, 2003, 10:44pm

Hi Amen... (love the name I believe too LOL) Hey there isnt anything I can say that these guys havent said... there is a wealth of information here. This is the best place on the planet for Cluster sufferers... We know first had how to deal with Cluster. Experience speaks here... Welcome and sorry... Nice to meet you...Ree

and to my old cluster buddies... this is an awesome thread... How proud I am to walk in your company... You are ALL such good, warm supporters... does my heart good.................. love you all Ree

Title: Re: New and overwhelmed
Post by amen on Nov 7^th, 2003, 11:02pm

Thanks for the advice Chris. I have been thinking the same thing.(About it being habit forming) I have already decided I will only take it for a couple days and only as needed. Then I will stop and see what happens. If the beast is still as intolerable as it has been then I will take all of the information I have learned about ch in the last few days and present it to my Dr. As I've said I have just found out that there is a name for this hell I have been suffering, and I am not sure that my Dr. is very experienced with Ch. Right now I am just desperate for the break.

Title: Re: New and overwhelmed
Post by Prense on Nov 8^th, 2003, 11:31am

on 11/07/03 at 23:02:32, amen wrote:

Right now I am just desperate for the break.

Oh how I know that feeling all too well. This link will offer you some CH doctors in MI. These docs have been recommended by other CH sufferers.

http://www.clusterheadaches.org/doctors.htm#usa

Oh and about the samples that are "similar" to imitrex...
To my knowledge, there is nothing similar to imitrex. There are other meds in the same drug class, but for whatever reason, some work for CH and some don't. It really all is hit and miss...trial and error.

Hang in there!

Chris

Title: Re: New and overwhelmed
Post by amen on Nov 9^th, 2003, 10:49am

For those of you who were curious as to what the Dr. had given me (what form of Immitrex and what else) I don't want to make it sound as though I don't know what I am taking but I was at work and didn't have it on me and am self concious about my spelling. If course I don't know if i spelled that right. But any way it was 2.5 of Zomig in a disolvable pill and Imitrex in pill form. The Zomig did nothing at all and i am not sure about the Immitrex because I took it during my evening ha which is always milder that the middle of the night and morning ones. So I am not sure if the ha didn't last as long because it had already run its course or if the trex had subdued it. He didn't give me a big enough sample to really tell. i will try and get some more. Just to see.

Title: Re: New and overwhelmed
Post by Prense on Nov 9^th, 2003, 11:03am

Well those are good choices... Just a heads up though, the imitrex injections can work in less than 10 minutes where the pills can take alot longer. Some folks have reported pretty fast relief with the zomig as well.

Title: Re: New and overwhelmed
Post by Donna on Nov 9^th, 2003, 11:31pm

Welcome aboard, Amen:

It might be a good idea to find a neurologist who understands cluster headaches. Prescribing a narcotic is not the solution as they do not even help most cluster headache sufferers.

Many people use the Prednisone taper (my son being one of them) with great success in breaking a cycle.

Many people use Verapimil in rather high doses as a preventative with great success.

Many people use Imitrex injections, and oxygen (read the info on the left for the only productive way to use an oxygen mask) as abortives, with great success.

And a number of people have used shrooms with success.

All of these and many more are explained in the info provided on this site.

This information was gathered by surveys of ch sufferers over the last 4 or so years that this site has existed, so it comes first hand.

Truly hope you find the right combo for you. Good luck and glad you found our little home.

Title: Re: New and overwhelmed
Post by nancyc on Nov 10^th, 2003, 12:11am

Amen, if the Doctor gave you fiorinal ...it does not have codeine in it unless it says fiorinal with codeine..There is a difference....it only has the butalbital and tylenol in it..but it is still habit forming..and it is for mainly tension headaches...For me, Imitrex injections work really good during an attack...not the imitrex pills or nasal sprays ...they are not fast enough for me...Verapamil is a good med to try but it does take awhile like Bob G says...anyway, good luck..also, check out our medication section... :)nancyc

Title: Re: New and overwhelmed
Post by sandie99 on Nov 10^th, 2003, 5:55am

Amen,
sorry that you have ch, but welcome aboard! :)
This is the best place to be when you have it. I'm glad that you have the right diagnosis now!

Treatment-wise, be prepared that it can take time before you'll find the one that works. There are so many around and I wish my doc would have mentioned to me, that the first med might not do the trick... :(
My advice: read and learn as much as you can about ch and different treatments. Good luck! :)

Best wishes & PFdays,
sandie99

Title: Re: New and overwhelmed
Post by amen on Nov 10^th, 2003, 12:43pm

Well the fiorinal is without codeine. It is working for now. It totally wipes out my evening HA with 1 pill but my morning one, I have to take 2 and that brings me down to about a kip 5-6, that only last about a half an hour. That's down from a kip 8-9 that last 3 hours. I am not sure why this is working for me but I have experienced in the past where something will work for one cycle but be totally ineffective for the next. It's been 5-6 years since my last cycle and since I didn't know until now what it was I didn't spend that last year investigating. I am hoping to educate my Doctor rather than find a new one since he knows my whole history. I have been going to him since I was 12 and he delivered 3 out of 4 of my kids. I am just worried about all of the things I have been reading about what other people are taking. It seems most of them cause either rebounds, or longer cycles. I have even read of some people on this website that have gone from being episodical to chronic. I think I will stay on the fiorinal for this cycle since its working and I have only needed to take about 1/3 of what the Dr. prescribed so I am not too concerned about becoming addicted. In the meantime I will keep educating myself on the alternatives.

Title: Re: New and overwhelmed
Post by gmlevenhagen on Nov 10^th, 2003, 12:55pm

[smiley=hug.gif]

Welcome

Sorry you had to find us, glad you did

Gena