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

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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.

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

Thank you everyone.  I am awaiting a call back from my neurologist.  Please keep the tips coming!

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

oxygen, oxygen, oxygen!

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

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

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

IndianaJohn wrote on Oct 10th, 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

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?

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! 

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

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 :'().  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.

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

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?

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.

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Don

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.

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 :)

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.

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.

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.

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

Thanks Gregg, I looked at the date and wasn't sure if he was still following it or not.

Mabey he is no longer on this earth

Aw jeez, I hope not. If you are checking back in, Eddie, realize there are people here who really do care about you.

I sent him a facebook message asking him to please do so.

Good call, Brew.

I also sent him a message and asked if he would come here and give an update