Hello fellow, "clusterheads." Allow me to give a brief introduction to myself, 29 yo. in California, USA, and suffer from episodic clusters. They tend to visit end of summer to winter, and last for weeks, to months. My uncle is a chronic sufferer, but is no medium for empathy or communication. I want to mention, how relieved I was, to read many of your deepest darkest moments and relate to them, to know that I am not alone in this suffering.

The wife (married over a year) tries to be sympathetic, and the daughter only is aware that daddy gets headaches and is sick.

I have many questions, and much to share... more to my benefit of release, but the post will become to long so I will attempt to make a quick brief statement.

Thank you all for having this site available, and I would appreciate anyone who has the free time to contact me here to answer questions and discuss my trials. For it will be difficult for me to vent... in such a one sided fashion.

For the benefit of any who wish to reply, currently I am on a prophylactic of Atenolol 50mg, and pain relief of Fiorinal 50/325/40.

I fear.. that my episodic will turn chronic. I have had them for about 7 years. The Fiorinal used to be quite effective, 1 per 4 hours, but now I have to take up to 6 in a 4-6 hour period.

Point... what was my point...

Meds:

any recomendations? I read that O2 is very useful, but fear to become dependant on an O2 tank at home. This will scare the family. What options are there that are stronger in pain relief than fiorinal?

Episodic v Chronic:

How common is it that the episodic become Chronic? is that typical?

Side Effects:

Debilitation, and others: anyone feel other mental distortions? epiphanies? moments of clarity? or are these simply dillusions of grandeur from the meds? Anyone lose their intellect? intelligence, become dumb, lose their ability to retrieve words or think clearly,

Emotional effects:

fear, helplessness, frustration, rage, despair, or what I call "Filling the void" where I regress to consumables that once gave me happiness, and find a greater loss at their inability to fill this void. Fear and Frustration at the intentional/unintentional lack of empathy from the family and medical community. Their "textbook approach to me" is very frustrating and has a real lack of intimacy that I am craving from someone in this time of need.... which ties all back to the void, and the endless pit it seems to be.

Enough of my rambling, thank you all for your ears and eyes on my troubles, as I understand you all have your own demons to battle. Thank you for your time.

Oxygen at high flow rate rocks my world.

          Potter

Hi and welcome.

It does not matter if we all have our own battles to fight.  We are here to help others.  None of us are Dr.s but together we have 1000's of years of experience in dealing with this condition, Drs. Ins. Co's, as well as co-workers and family who do not get it. and the info. we have gleaned is all here as well as on the OUCH web-site which all are here...over to the left,  on the links.

Something you said in your post...I just HAVE to say something about.


Quote:

1 per 4 hours, but now I have to take up to 6 in a 4-6 hour period. Point... what was my point... Meds: any recomendations? I read that O2 is very useful, but fear to become dependant on an O2 tank at home.

You are realizing that narcotics are not cutting it and need to ramp up the dosage but are afraid to be too dependant on 02.  Oh man...that is just wrong.  There is NOTHING...I repeat NOTHING, in oxygen that will make you dependant on it.  You get hit, you suck 02.  It aborts the H.A. and you go on,  life as usual.  Not so with narcotics, (Percoset, vicodin,Morphine, Fiorinol etc. )   They do not work and you will be come addicted to them.  Then you still have CH but you will also have one more problem to deal with.  When you are out of cycle...you put that 02 tank away in a closet till the next cycle.  With narcotics you do not.

Please read Svenn's "dancing with the devil" thread that is locked up above.

Please keep talking to us and asking questions.  That is why this site exists.   :-*    Linda

02 is a savior. My wife is a savior, she is my biggest source of empathy as she feels my pain like no other.Fiorinal never worked for me. Pain killers are pretty useless for CH.
all the best
the bb

High flow o2 rules in my corner!

Broonor wrote on Oct 27^th, 2009 at 4:48pm:

I read that O2 is very useful, but fear to become dependant on an O2 tank at home. This will scare the family.

Trust me,seeing a father or husband experience a really bad kip 10 is a hell of a lot scarier. 02 is painless and a absolute life saver for many of us CH'ers.


Lefty..!

Hey Broonor, good to have you 'round.  :)

Linda has it right about O2 vs. narcotics BTW, as I'm sure virtual hordes of Clusterheads around here will agree.

FYI - you only have to be on the O2 maybe 10-15 minutes or so per attack, so it's not like you have to even have the family witness your breaths of fresh air.  ;D

O2 isn't the only very much preferable to opiods treatment  that people regularly benefit from here, it's just a wildly popular, effective, and non toxic one.

So yeah stay and hang out with your fellow clusterbums and we'll have some gabfests about what really works.

Info gained on this site has helped me transform my CH experience into something pretty darn manageable, which is beyond astounding, and I'm hoping you could get a similar result.  8-)

A side note here, Atenolol, is a beta blocker (as Inderol is).  Beta blockers are the *old school* treatments for ch.  Your doctor may be using old information to treat your headaches.  From what I've read here, calcium channel blockers are the newer treatment.

Fiorinal causes dependence. O2 does not. But it sure kills CH better than Fiorinal.

(And just a personal recommendation: If you want to stay married more than one year, drop the term "the wife." It's like "the dog," "the lamp," "the car." Replace it with "my wife.") Just something I've found helpful.

Thank you all for the profound response. I was unsure of how much feedback I would receive, and will definitely post more here (or is there another post section more suitable?) with many more questions, and things I need to share, to see if what I feel is typical or atypical.

I will definitely speak with the doctor about the O2, and would love to get off the narcotics, I just fear the pain, and Fiorinal ... does work.. even if delayed or through 4-6 doses of 50/325/40.

Thank you for your support, I will write again.

Welcome!

I'll chime in...not to add...but to confirm (27 yrs now in clusterville).

You are being treated with "old time" meds. My experience:

Fiorinal just turned a wide awake clusterhead, in incredible pain, into a sleepy clusterhead...in incredible pain.

Atenolol?...nothin'....

Oxygen...well, how about saving my sanity. That works for me!

Verapamil (480-1020 mg/dy)....stops about 50% of hits.

Zomig nasal spray...for the breakthroughs (there are other triptans that work well for others).

Get thee to an up to date doc....bear in mind that my experience may not be yours...ask questions of this group like your sanity depends on it (it might!)...and good luck...

Best,

Jon

Thanks Jon019 for your med feedback, I am sure your experience in this matter is valuable, I have only known my own history, and what worked for me.

Fiorinal, at first worked.. 1 tablet for 4-6 hours. Each year it got worse, and I needed to use more Fiorinal. Finally this year, I am on 6 per attack, and am very concerned. My behavior has changed a bit, as well as my ability to think, and remember, not to mention my coordination was off as well. I even had a moment of absolute intense rage, when I was home alone, broke some objects on my desk, and hurt my hands. I have not reached that state of mind since then, but I have no patience of late, and have grown concerned. Are these behavior changes due to my pain management? or are they due to the meds, lack of meds, or being on too many meds?

So, my concern led me to the doctor. I was not able to speak to him about my behavior changes as he was busy, and didnt spend the time to go over all the details. And he tried to get me on Sumatriptan, which seemed to work on the second pill, but then it was completely ineffective, leaving me to ride out the "dance" without pain meds, as I was fearful of combining any of these meds. Besides Sumatriptan's ineffectivness, it made me ill, like a terrible case of the flu. Body aches, and was very repelling.

I know that each case is different, and that not all meds will work universally. So all of your suggestions give me hope that a path to relief does actually exist.

The medical community just lacks empathy, they may have some remote show of sympathy, but they do not understand the emotions involved in battling these things. I believe you all do, as I have read many passages and related completely.

The events that happen with this condition, the symptoms, and the way of speaking of these concepts is different that I have used, as I have made my own name for these things. But, the validating and empowering moment was that they are called different names, but we are all talking about the same thing. What you call "shadows" I call creepers. What you call "dance" I call a routine, and demon or attacks are the same, oddly enough as I have called them the same thing.

Just sharing my exp, to tailcoat Jon019's medical suggestions.

Thank you again for your support and feedback.

Quote:

The events that happen with this condition, the symptoms, and the way of speaking of these concepts is different that I have used, as I have made my own name for these things. But, the validating and empowering moment was that they are called different names, but we are all talking about the same thing. What you call "shadows" I call creepers. What you call "dance" I call a routine, and demon or attacks are the same, oddly enough as I have called them the same thing.

Whatever you call it, it can be living hell if not managed properly.

Caffeine can abort a shadow. So can 02 easily. Imitrex is usless in a pill. Get an injector.
Timing, a good treatment plan, and knowledge will go a long way toward management of CH. Then your hands will heal up ;) Check out the link, there are many treatment options both traditional and alternative.
all the best
the bb
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Thank you all for your feedback. I will pursue this all further, and attempt to better arm myself for this path I have before me.

Thanks all, for your replys.

[quote author=Check out the link, there are many treatment options both traditional and alternative.
all the best
the bb
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This link has some great information bb, I have read many dissertations, and research, but this one is very specific to cluster headaches, which is fantastic. Thanks.