Hello fellow clusterheads.

I haven't posted much, I just come here to read your stories and take your advices and try what I see that fits best. I'm a chronic sufferer for the past 9 years. It has reached a point where I can no longer control it nor live with it. I do not know what to do, nor what actions should I take from now on, because it seems I am no longer the master of my own life.

I have tried everything. Verapamil and Lithium on high doses, O2 as a preventative, triptans, as well as high doses of topiramate. They used to help. I was pain free for months. Then shadows came. I started taking kudzu supplements but they proved to be useless. I do not drink alcohol, I do not smoke.

In my desperation I turned to the much discussed psilocybin treatment.  I did exactly as the procedure explained. I was pain free for 3 days. And not able to function as well. I deny that treatment, non of the promised 6 months of pain free blissfulness.

I haven't slept uninterrupted for well above 4 months. I get 4-5 attacks a day ranging from 5 to 8 on the kip scale, worse of course happening during the night.

Nothing helps me anymore and I just pace around from room to room, my family watches me as I suffer and I just see myself distancing from them more and more and I just can't enjoy anything in life anymore. I haven't laughed heartily for so long because I've been sucked out of emotion.

The only thing that keeps me around is the hope that any day now that freak monster will go away just for 1 night. But it just comes back destroying whats left from my sanity. I really don't think I can handle any more of this. What kind of a monster laid that curse on us?

I don't think I can carry on much longer...
Help me ch.com, tell me there's hope.

I am writing this before running to work and should be heading out the door now... but needed to respond to you.

Have you discussed the Ons (check spelling) implant with your doc??? This may be the hope you are looking for.

Sorry I am short on time hopefully someone with more knowledge on this implant will reply to this today.

Hang in there!!!

The clusterbuster treatment is not a one-time thing. Many have had to repeat it every 5-7 days, sometimes for a month or more in order to achieve long-term success. I kept repeating it at varying intervals for 5 months before I had long-term results. My last dose was May 28, 2010, and I've now been pain-free since that time. Between January, 2010 and that date, I busted probably 15 times. Each time it got a little better, with longer periods of pain-free time.

Do not give up. The fact that you were pain-free for 3 days after what I can only assume was 1 dose tells me that it can and will work for you.

Have you tried Melatonin? They really helped my husband by blocking most of the night hits. When he was able to get just a little break and get some sleep at night he was able to get his feet under him to fight on. The exhaustion that comes from waking up multiple times a night makes all of the rest of this so very much harder to fight. Please know I do understand.

You mentioned your family, do you have a spouse you can get to help you? I am a supporter, and I will tell you that I had to take the reigns for my husband when he was in the midst of the worst of it. Constantly handing him a Red Bull when he needed them, getting the O2 set up and filled, making sure he took his Melatonin before bed. Exhaustion, pain, and depression made doing all of that almost to hard for him to do himself. As well as something I still can't quite put into words. Fear of the feeling of dashed hope, maybe? Almost as if he couldn't bear to get his hopes up to see them dashed again when something didn't work. So what he was not willing to try for himself he WAS able to try for me- as in a "well, it'll make my wife feel better if I do this..." kinda attitude. Some things we tried worked well (Melatonin and high flow O2), some worked sometimes (Red Bull at the start of shadows), some didn't work at all- (Feverfew showed no benefit that I could tell). But he would not have even tried it, committed to doing it correctly, or followed through with many of them if I hadn't forced him to. Gently, and with love, but forced him to nonetheless.Turns out, sometimes the horse DOES drink the water afterall, proves that saying wrong. If you do have someone who can help you please bring them here or they can PM me or one of the many other supporters- we all want to help.

If you don't have someone to do that for you right now, then please let this board be your support. Keep a running commentary, we will be here with support, ideas, nudging, etc. - I promise.

edwardbear wrote on Nov 12^th, 2010 at 6:32am:

O2 as a preventative, I get 4-5 attacks a day ranging from 5 to 8 on the kip scale, worse of course happening during the night.

Oxygen may still be able to be effective at stopping, but not preventing.  Check and review the oxygen link over on the tab to the left highlighted in yellow, it gives the best ways to use oxygen to handle each of these attacks.

Just making sure it has been tried in this manner.


I agree with Brew on the procedure of alternative busting, also.

Edward, No one can know how you're feeling right now. We can all relate and try to help kick it's ass, but we can't really help with the emotional side of this other than to console you and support you. I strongly recommend that you seek the help of a therapist to help get you through this dark time. The desperation you feel is difficult to fathom, but know that your family loves you and depends on you to be there. It really is possible to get this monster back in its bottle as so many here can attest. Please keep trying.

-Chris

Tough place to be in. I feel for you. Don't give up hope, it's all we have sometimes. I'd continue to pursue the busting route, and look at a higher flow rate on the 02, it's worked for some when the lower flows weren't cutting it. Hang in there.

Joe

Hi Edward,

I'm so sorry you've not found that magic bullet yet.  The fact that what works for each of us can be so different is what makes CH so hard to combat.  My heart goes out to you and to your family.  Many of us have been exactly where you are and it kills me every time I read of another clusterbrother/sister suffering like this.  It's just not right.

Some great advice has been offered so far.  I would back up what Chris suggests and try to get with some professionals to help with the depression.

On the treatment side, have you every had your testosterone level checked?  It's a cheap blood test and could lead to some relief.  It has for me anyway.

Good luck and post back.  By lurking I think you denying yourself a good deal of direct support that could really help right now.  And that's what this site is all about.

-Dennis-

Assumng you are working with a skilled headache specialist it appears that looking at treatments/approaches which are not conventional would be an approach to discuss with him.
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Surgical approaches are not notably helpful so far but this abstract caught my eye.

Neurology. 2006 Nov 28;67(10):1844-5. 
Acute hypothalamic stimulation and ongoing cluster headache attacks.

Leone M, Franzini A, Broggi G, Mea E, Cecchini AP, Bussone G.

Department of Neurology and Headache Centre, Istituto Nazionale Neurologico Carlo Besta, via Celoria 11, 20133 Milano, Italy. leone@istituto-besta.it

Long-term hypothalamic stimulation is effective in improving drug-resistant chronic cluster headache (CH). We assessed acute hypothalamic stimulation to resolve ongoing CH attacks in 16 patients implanted to prevent chronic CH, investigating 136 attacks. A pain intensity reduction of > or =50% occurred in 25 of 108 evaluable attacks (23.1%). Acute hypothalamic stimulation is not effective in resolving ongoing CH attacks, suggesting that hypothalamic stimulation acts by complex mechanisms in CH prevention.

Publication Types:
Evaluation Studies

PMID: 17130420 [PubMed]
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This abortive is gaining more attention in the U.S. and a brief trial would be both inexpensive and fast.

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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The most abstract approach would be to consider that you don't have Cluster. See the PDF file, below, especially the abstract reporting high levels of false positives in making a diagnosis of CH.

It's too easy to "know" as an absolute. Starting over again may lead to some fresh thinking.....

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I would echo Marc.  You didn't mention what kind of mask you are using, but said you follow what is posted here, so I presume you are using the proper mask  The O2ptimask available from the CH.com store made a lot of difference for me.

Also, you didn't mention th flow rate of the oxygen.  I used to use it at 15 lpm, but it wasn't very effective.  I was convinced to try it again at 25 lpm and it works well for me now.  5-8 minutes to abort most of the time.

Don't just lurk.  By inter-relating you are able to get a lot more support which you desperately need right now.  We've all been there, or will be soon, and this place has done wonders to help get one's feet back onto solid ground.

Hang in there, my friend.  You've got a family at your back, ad we don't let a few miles and a pond between us keep from supporting you.

Jerry

Hi Edwardbear...the despair in your post is overwhelming and my heart truly breaks for your suffering.  By reading the site the past couple of years, I'm sure you've tried some, if not all of the suggestions, at one point or another.  I'll let the other family members guide you on treatment options, as they are the experts, and your case seems particularly hard to get a handle on.

I just want you know that all the sufferers have been where you are now, to some degree or another, during their fight with this beast.  I want you to know that we are here for you no matter what time of day or night, you can usually find someone on the board.  Don't let the darkness take over.  Anytime, but especially during the darks time, please come here and post and let us help you through it.  I agree with the suggestion to find a professional to talk to as well.  I remember watching my husband go through just what you describe...it seems hopeless some days.  That's when you have to dig to the bottom of your soul and fight with all you have.  YOU ARE WORTH IT!!   I know you're in unbearable pain, I know you're hurting physically and emotionally, I know you're exhausted..and although I don't know you personally, I know with the right doctors and treatment, or if you choose the busting route, you can fight and WIN...and live a normal life.  Hundreds, if not thousands, on this site and our sister site can testify to that.  It may not be easy, but I want you to BELIEVE it can and will happen!

Please know you are one of the family and that we truly care.    [smiley=hug.gif]

Found the topic I was looking for that (depending on what your doc says) may be an option if you are almost out of medicinal options...

ONSI (Occipital Nerve Stimulator Implant)
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

what everyone up there has already said
and

we understand   we do 
dont give up, there is always hope

xR

Hello Edward Bear.

There is only hope at times.
When all else fails treat the side of no pain. Make the very most of the times without pain. Walk in the sunshine, swing on a swing.

It is those moments between pain that determine how we battle or accept what has been given us. It is those times when we determine ourselves to be a victim or a victor.

For me through 30 odd years of unrelenting pain that is/was allways the key to survival in those deepest darkest corners of the mind through all the days and nights. One by one the lights begin to shine and the darkness fades away.
The depths of pain can be a part of who we are but it doesnt need to be what we are.

Find faith in ones power and power will find faith in you.

MJ wrote on Nov 13^th, 2010 at 1:59am:

The depths of pain can be a part of who we are but it doesnt need to be what we are. Find faith in ones power and power will find faith in you.

I don't think I've seen a better post here in a long time.  Well said.

All the best,

George

Thank you all for the kind support. Those words coming from people who suffer like I do are priceless.

To Bob Johnson, it is a confirmed Cluster Headache. Quacks like a duck, walks like a duck, looks like a duck, HURTS like a duck. Wait the last one doesn't make sense. Even if there was any doubt, I was scanned top to bottom, and battery of tests were performed just in case.

To MJ, thank you for the great words of wisdom. I will remember them.

To Ginger S. interesting article, I will look into it. It is good there is something done after all.

To Lauren17, I have a future Mrs. At the moment we live separately upon my decision. She is aware of my condition, I have explained to her all the details and thank God she didn't went "oh so it's like a migraine". During the few attacks she witnessed, she has been very supportive, helping me with whatever I need. Most importantly, she didn't run away to the church asking for an exorcism be performed. Ladies in the past have left me because of my condition. Not when hearing about it.

Again, thank you for your warm words of kindness and support.

Hey Edward,

Just wanted to say hi.  These guys rock don't they!  This is such a wonderful place, not only for great advice but support too - and yeah I think it would be far to say that we've all had some of the low lows associated with this pain. 

Please hang around, there is nothing like chatting with people who know and understand exactly what you are going through. 

Keeping you in my thoughts,

Kate

Great advice fron all.

I had to try many things many times before I got results. Stick with the Melatonin for night hits, iy works for sooo many here. And keep us posted.

edwardbear wrote on Nov 13^th, 2010 at 9:06am:

..... HURTS like a duck. Wait the last one doesn't make sense. ...

Ha! ....well you still have your sense of humor WELL intact.   ;D

What the others said about busting (although possible for some, it is not promised as a "try it once and you're pain free for 6 months" solution, especially for chronics). You got 3 days pain free? That sounds genuinely encouraging to me - what other med is doing that for you right now?

What the others said about high liter flow non rebreather O2. I have to hyperventilate at 45 LPM with a big 'ol reservoir bag for O2 to consistently work for me, but find it worth doing.

One more thing about melatonin - there have been reports lately of CH'ers taking as high of a dose as 18 mg before bed (with success) if the starting dose of 9 mg doesn't work.

I will pray for you.

I feel for you but I'm about to take the suggestions in another direction.

Yes you need a solid plan for pain reduction but

You need just as strong of a plan to deal with the obvious depression and anxiety that you are dealing with.
You need to come here more if you can just to know that you are no alone.
you need to find a therapist who has a background in cognitive behavior therapy and pain management.

It's sucked you in my friend. Let's climb out!

Eric
Chronic 6 yrs...never happier in life though.

Eric, you are spot on!  I hope you will heed his wise advice Edward.  I find this place to be about the best therapy I can find.  Usually when I really need it I can find a good laugh or two here.  If not I'll go back in the archives and look up the Oxygen Safety Kit story, or one of Elaine's stories from several years ago.  It's good to have the tears coming from laughter for a change.

Besides that, we'd like to just have you around.

Jerry

I'm writing this still trembling out of a solid ten on the kip scale. Worst thing? Happened in the office. Thank God my colleagues are aware of my condition and we have a lockable bathroom. Locked myself in, and started to splash myself with all the cold water I could. Usually helps with the 6's and 8's. Didn't do squatt against a 10. I didn't have my O2. I had only 1 Red Bull. God... Nothing helps against that monster if it trully wants to show who's the boss.

It's my 4th headache to hit the 10 on the kip scale. I'm still recovering, but your words are a great help.

Thank you, ch.com.

Is there a reason you don't have an oxygen tank at the office?

Quote:

Assumng you are working with a skilled headache specialist it appears that looking at treatments/approaches which are not conventional would be an approach to discuss with him.

Listen to Bob.

Edwardbear, like all of the others, I too am concerned for you and the depression you manifest...understandable given the unrelenting pain. Your injection of humor is much more than a sign you haven't lost your sense of humor. It's an indication of your ability to switch mood states and that is critical. See a psychologist, or talk with your neuro, about your depression. There can be legitimate pharmaceutical intervention available.

May I share another concern? Hope so, since I'm going to anyway. You have only listed a couple of preventatives that you have tried and which have failed. There are tons more. Nor have you shared the details of what you have done (including the O2 intervention) which may or may not be as it ought. I find this disconcerting for two reasons: first, the more we believe there is an effective treatment we have not yet tried, the more our wishful thinking becomes grounded in the reality of hope. Second, hey, there's more out there you haven't tried, and we really don't know what you've tried except in generalities.

Come on, hang in there with us, and since you've taken the plunge by writing, why not write us some more? I, too, am praying for you. God bless. lance