Click this link to read a post I like on the clusterheadaches.com message board...

ClusterEd

CH.com Newbie

Offline

oh... you've got a headache?
lol! please...

Posts: 18
lena, IL
Gender: male

Help me before I end it....
Oct 9^th, 2012 at 2:50am

Hi my name is Eddie. I am 29, male, and living with ch (if you can call it living Cry

). I have been diagnosed by Diamond Headache Clinic in Chicago, IL in 2005. I also get migraine headaches, which pale in comparison. I recently started a new episode, which I fear may have switched from episodic to chronic. I have had one episode last longer but that was years ago, I am trying to remain upbeat and hopeful. I recently started seeing a new neurologist. I do not have heath insurance and have applied for assisted care from the local hospital, but in the mean time I am in the midst and without. I am currently on Verapamil (160mg) and Topamax (125mg) nightly. So far not much has changed. I have been on these medications for over a month now with little change. I am at four to five attacks per day and they are the worst they have ever been. In the past 7 weeks I have been in the ER for pain control 8 times. Earlier today I called the on-call neurologist and it happened to my doctor. He said he was instructing the ER not to give me the pain injection anymore. What should I do?

I am allergic to:
Imitrex, Zomig, DHE, and Celebrex.
O2 treatments have been ineffective.

Other abortive meds/treatment I have tried:
Maxalt, Midrin, Treximet (allergy; Imitrex), O2, 2% Lidocaine Nasal, Cafergot

Other Rx:
Vivactil, Idomethacin, Depakote, Prednasone,

OTC Meds:
Excedrin Migraine, Tylenol, (other NSAIDS, but proven pointless)

There could be more but at this point I can't remember. In the last move I lost my CH binder and all the info it contained. I have been doing my best to reconstruct the binder but it has been a challenge.

I am in desperate need of an effective means of pain control until we can get this under control. I am not looking for a long term narcotic fix, but at this point they are the only thing that lessen the pain, and I cannot live with this anymore. I'm about to end it myself.

I am well aware of the throws of addiction as my aunt is a crack cocaine addict and my mother made my siblings and I attend the family classes. If anyone has any recommendations based on their experiences please please please let me know. I beg you. Please email me directly if it contains any person or sensitive information you wish to remain private.

Back to top

« Last Edit: Oct 9^th, 2012 at 4:28am by ClusterEd »

IP Logged

Brew

CH.com Sponsor
CH.com Alumnus

Offline

Posts: 14163

Re: Help me before I end it....
Reply #1 - Oct 9^th, 2012 at 6:43am

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

or

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

or

The combination of these two approaches have made me more or less pain free for almost three years.

Be prepared to read - a lot. But well worth the investigation.

Back to top

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Help me before I end it....
Reply #2 - Oct 9^th, 2012 at 8:59am

Hey Eddie,

We know what you're going through and the good news is it doesn't need to be that way.

Brew has already given you links to two methods of controlling cluster headache with higher than average effectiveness. I've sent you an email with some additional information.

Finally, you're not alone so forget the thought about ending it... Most of us CH'ers have had that thought and it's not really an option... As horribly painful and disabling as CH can be, it's not fatal and life is far more precious...

Take care and please keep us posted when you've had the opportunity to try some of these methods of cluster headache intervention.

V/R, Batch

Back to top

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

ClusterEd CH.com Newbie Offline oh... you've got a headache? lol! please... Posts: 18 lena, IL Gender:	Re: Help me before I end it.... Reply #3 - Oct 9^th, 2012 at 1:38pm Thank you everyone. I am awaiting a call back from my neurologist. Please keep the tips coming!
Back to top	IP Logged

LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Help me before I end it.... Reply #4 - Oct 9^th, 2012 at 1:50pm Eddie, Go read the many replies at your duplicate thread at Cluster Headache Specific board you posted called "Help me please... before I end it." No need to end it! Be tough! -Gregg in Las Vegas
Back to top	Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019 IP Logged

IndianaJohn CH.com Hall of Famer Offline Into the jaws of the Beast Posts: 686 Decatur,Indiana,USA Gender:	Re: Help me before I end it.... Reply #5 - Oct 10^th, 2012 at 11:13am oxygen, oxygen, oxygen! get some, even if it's a welders set up. It will help.
Back to top	Did my brains fall out or is this headache over? IP Logged

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: Help me before I end it....
Reply #6 - Oct 11^th, 2012 at 8:18am

IndianaJohn wrote on Oct 10^th, 2012 at 11:13am:

oxygen, oxygen, oxygen! get some, even if it's a welders set up. It will help.

Agreed! You were probably on too low a flow, just as your med doses are too low to be effective.

BTW, isn't unusual to be "allergic" to such a broad range of meds as you list? What reactions did you have? lance

Back to top

IP Logged

ClusterEd

CH.com Newbie

Offline

oh... you've got a headache?
lol! please...

Posts: 18
lena, IL
Gender: male

Re: Help me before I end it....
Reply #7 - Oct 13^th, 2012 at 6:01pm

wimsey1 wrote on Oct 11^th, 2012 at 8:18am:

IndianaJohn wrote on Oct 10^th, 2012 at 11:13am:

oxygen, oxygen, oxygen! get some, even if it's a welders set up. It will help.

Agreed! You were probably on too low a flow, just as your med doses are too low to be effective.

BTW, isn't unusual to be "allergic" to such a broad range of meds as you list? What reactions did you have? lance

With

Imitrex:
SubQ Injections: felt like i was going to stroke out or heart attack/panic attack; paralyasis like sysmptoms; shortness of breath;
Nasal Spray: Lightheaded; Dizzy; No noticeable effect on headache
Tablet (varying dosages): Same as nasal sprays

Zomig: intense neck pain and burning; did not relieve headache.

DHE: Vomiting within minutes of injection; G.I distress for 2-4 days following treatment

Back to top

IP Logged

ttnolan

CH.com Veteran

Offline

beats me

Posts: 247
Scotts Valley, CA
Gender: male

Re: Help me before I end it....
Reply #8 - Oct 13^th, 2012 at 6:26pm

Hey Ed,
As far as I can tell those are some of the usual reactions to those meds... and some are willing to do them anyway.
Same as you with the trex, but still use the injections for emergencies like air travel when O2 is not available. I have been assured by ny doc that I won't die from it.
Zomig - hate it.
DHE - that is what I meant by a "dirty" drug. But it killed the headache right?

Back to top

IP Logged

jtuck

CH.com Newbie

Offline

I Love CH.com!

Posts: 5

Re: Help me before I end it....
Reply #9 - Oct 19^th, 2012 at 7:54pm

Hang in there Eddie!
There are still so many treatments you have yet to try! I've recently been turned on to the Vitamin D3 regiment, which shows remarkable promise. Likewise, I myself--though I know it's somewhat controversial--have experienced TREMENDOUS relief from psilocybin mushrooms. In fact, the first time I took them, the relief was TOTAL. As in: the second I felt them kick in, the pain vanished, my pupil returned to normal size, my nose unclogged, and my eye stopped tearing! Subsequent usages have not proven quite so thorough, but it has always brought the pain within a manageable level.
Stay strong, buddy!

Back to top

IP Logged

QnHeartMM

CH.com Sponsor

Offline

I AM a Phoenix!

Posts: 1783
San Diego, CA
Gender: female

Re: Help me before I end it....
Reply #10 - Oct 20^th, 2012 at 2:01pm

Eddie I know that the other folks here have given you some links and tips on some very effective treatments for ch. Please don't give up, win your life back. the D3 regimen may take a little while to help, dont give up on it. And as far as the clusterbuster routine goes, it too has helped many too.

In terms of O2, what flow rate were you using? And was it with non-rebreather mask? Look at the info we have here to the left, the yellow Oxygen link.

Please dont give up. I hope your next post is one that shares better successes in managing this dreadful disorder.

XO

Back to top

Treat people with kind words.

IP Logged

DanJ

CH.com Newbie

Offline

I Love CH.com!

Posts: 2

Re: Help me before I end it....
Reply #11 - Oct 20^th, 2012 at 2:31pm

ClusterEd wrote on Oct 9^th, 2012 at 2:50am:

Hi my name is Eddie. I am 29, male, and living with ch (if you can call it living Cry

). I have been diagnosed by Diamond Headache Clinic in Chicago, IL in 2005. I also get migraine headaches, which pale in comparison. I recently started a new episode, which I fear may have switched from episodic to chronic. I have had one episode last longer but that was years ago, I am trying to remain upbeat and hopeful. I recently started seeing a new neurologist. I do not have heath insurance and have applied for assisted care from the local hospital, but in the mean time I am in the midst and without. I am currently on Verapamil (160mg) and Topamax (125mg) nightly. So far not much has changed. I have been on these medications for over a month now with little change. I am at four to five attacks per day and they are the worst they have ever been. In the past 7 weeks I have been in the ER for pain control 8 times. Earlier today I called the on-call neurologist and it happened to my doctor. He said he was instructing the ER not to give me the pain injection anymore. What should I do?

I am allergic to:
Imitrex, Zomig, DHE, and Celebrex.
O2 treatments have been ineffective.

Other abortive meds/treatment I have tried:
Maxalt, Midrin, Treximet (allergy; Imitrex), O2, 2% Lidocaine Nasal, Cafergot

Other Rx:
Vivactil, Idomethacin, Depakote, Prednasone,

OTC Meds:
Excedrin Migraine, Tylenol, (other NSAIDS, but proven pointless)

There could be more but at this point I can't remember. In the last move I lost my CH binder and all the info it contained. I have been doing my best to reconstruct the binder but it has been a challenge.

I am in desperate need of an effective means of pain control until we can get this under control. I am not looking for a long term narcotic fix, but at this point they are the only thing that lessen the pain, and I cannot live with this anymore. I'm about to end it myself.

I am well aware of the throws of addiction as my aunt is a crack cocaine addict and my mother made my siblings and I attend the family classes. If anyone has any recommendations based on their experiences please please please let me know. I beg you. Please email me directly if it contains any person or sensitive information you wish to remain private.

Back to top

IP Logged

DanJ

CH.com Newbie

Offline

I Love CH.com!

Posts: 2

Re: Help me before I end it....
Reply #12 - Oct 20^th, 2012 at 2:40pm

Eddie--I saw you are doing a little better. I am also in a monster cluster cycle and am using glasses of cold coffee when the attacks begin--at 2 am and then hourly pretty much, which is helping me for most attacks. I have tried all the meds you mention and am on verapimil and zomig right now resisting taking prednisone but may have to use it. I saw some other comments about oxygen and d3 and 5 hour energy and am adding those. It is impossible to describe the paid that to me is like a huge glacier slowly moving down the side of my face. I have even beaten myself with a belt like those guys in the middle East--that can at least divert the attention away from the headache for a little bit... I had oxygen several years ago and will look at that too though it is difficult to get it here (NYC). Hang in there! Dan

Back to top

IP Logged

Marc CH.com Old Timer Offline Posts: 429 TX Gender:	Re: Help me before I end it.... Reply #13 - Oct 20^th, 2012 at 3:45pm DanJ wrote on Oct 20^th, 2012 at 2:40pm: ................................................................ ........I had oxygen several years ago and will look at that too though it is difficult to get it here (NYC). Hang in there! Dan Why is it difficult to get in NYC?
Back to top	IP Logged

Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Help me before I end it.... Reply #14 - Oct 21^st, 2012 at 1:58am Oxygen is one of the best treatments you can find. It must be used with a proper CH setup. Most Doctors don't have a clue about O2 for CH so be aware. Check out the link below about O2, good info. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or . Don
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

Tim in Texas

CH.com Junior

Offline

I Love CH.com!

Posts: 92
Kerrville Texas
Gender: male

Re: Help me before I end it....
Reply #15 - Nov 19^th, 2012 at 8:11pm

Hang in there Eddie. For a long time I never had any kind of sasupport group/system. You know as well as we do that your cycle will end at some point. We know all too well about the 2 am monsters. I'm almost in month 4 of mine man. This last cycle has been the toughest yet. Just 3 days ago I begged and vegged for my girlfriend to kill me. This cycle has been like no other in the past for me. We know of the frusteration, exchaustion, and above all the PAIN! In the past week I quit taking all meds because I just feel that they weren't working. I do what we all here do....just grit my teeth, pace, squat down in a ball and cry and try not to let my son see me like this. Reading everyones testimonies has me convinced that oxygen treatments are the way to go. Now I'm just trying to educate myself on them and figure out how to manipulate the doc to write me that "magical script". I've been getting shadowed since my last CH and have had about 8 spikes. Hang in there man. We all know what you are going through.

Back to top

IP Logged

Clusterman59

CH.com Veteran

Offline

Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

Re: Help me before I end it....
Reply #16 - Nov 20^th, 2012 at 12:25am

Hey Eddie Johnny is my name and am a 37 year chronic clusterhead since 1973 and had only one 3 year remission in 1989 through 1992 then they came back with a vengeance and i have been chronic ever since.. What everyone is telling you is great advice and the o2 is the way to go but it must be a minimum of 25 to 30 lpm and a non rebreather mask and crank it up to the max to the point of hyperventilating . I started the vitamin D3 treatment 37 days ago and have been CH free for 34 days now the first time in 37 years that anything has EVER worked for me. Please give it a try. I think we all have been to the point of contemplating suicide but MY FRIEND LIFE IS BEAUTIFUL AND WELL WORTH THE FIGHT!!! Be patient and your relief will come.....You are not alone and we are with you and will help you as for as long as it takes so please vent when needed and never be afraid to ask for help. Take it one day at a time and you will be ok.
Wishing you the best and good luck getting your relief asap .......Johnny

Back to top

« Last Edit: Nov 20^th, 2012 at 12:26am by Clusterman59 »

Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

IP Logged

Tim Cobb

CH.com Junior

Offline

I Love CH.com!

Posts: 41

Re: Help me before I end it....
Reply #17 - Dec 9^th, 2012 at 1:46am

Hey Eddie hang in there, I've been there have the note I wrote my youngest son in my sock door also have 4 beautiful children and a great wife who has stood beside me through 16 years of marriage and 19 years of the beast. I now have 6 beautiful grand kids that I would have never known if I had done the deed 10 years ago. I have just recently started using o2 at 15lpm works about 80% and have taken more trex shots then I can count. Tried the pill threw up every time and taking anything through my nose while I am having a hit feels like a knife being shoved up there. Don't give up there are beautiful things that make the hits although painful and inconvenient less relevant. When my Grand daughter says Hi PPA well even in a kip 5-6 I still gotta give her a hug. Im praying you find an abort that works for you and soon you'll have pain free days.

Back to top

IP Logged

jackieg CH.com Junior Offline I love YaBB 1G - SP1! Posts: 56 x0\|scotch plains\|USA\|\|0\|0\|NJ,New_Jersey Gender:	Re: Help me before I end it.... Reply #18 - Dec 9^th, 2012 at 9:26pm Hi Eddie I know exactly what you are feeling, as do all the other friends here. I have given up on meds but have had a lot of success with the alternatives suggested to you. You can get some relief. Look ahead to the end of the cycle. Live for the in betweens. Better days always come. Hang in there. You are not alone.
Back to top	IP Logged

Tim Cobb CH.com Junior Offline I Love CH.com! Posts: 41	Re: Help me before I end it.... Reply #19 - Dec 9^th, 2012 at 10:29pm Ed just wondering if you tried low doses of the imitrex shots, I have been using 2-3 ml vs the 6 ml shot that it comes in and have noticed a difference in the after effects. Maybe the lower dose wont have the same negative effects but will provide the abort. Just a thought.
Back to top	IP Logged

LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Help me before I end it.... Reply #20 - Dec 9^th, 2012 at 11:08pm This is a duplicate thread that he posted the same day and hasn't been on ch.com in weeks, nor has he replied to this specific thread in two months. Not worth wasting efforts of typing here with support, just my opinion. -Gregg in Las Vegas
Back to top	« Last Edit: Dec 9^th, 2012 at 11:09pm by LasVegas » Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019 IP Logged

Tim Cobb CH.com Junior Offline I Love CH.com! Posts: 41	Re: Help me before I end it.... Reply #21 - Dec 10^th, 2012 at 12:52am Thanks Gregg, I looked at the date and wasn't sure if he was still following it or not.
Back to top	IP Logged

MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: Help me before I end it.... Reply #22 - Dec 10^th, 2012 at 5:39pm Mabey he is no longer on this earth
Back to top	IP Logged

AppleNutClusters CH.com Old Timer Offline 2012, Year of the Honey Badger Posts: 261 Richmond, Virgina, USA Gender:	Re: Help me before I end it.... Reply #23 - Dec 11^th, 2012 at 1:41pm Aw jeez, I hope not. If you are checking back in, Eddie, realize there are people here who really do care about you.
Back to top	IP Logged

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Help me before I end it.... Reply #24 - Dec 11^th, 2012 at 1:58pm I sent him a facebook message asking him to please do so.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

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