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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> OMG...I Can't Take It!!
        
(Message started by: Dublfase on Sep 24^th, 2006, 8:10am)

Title: OMG...I Can't Take It!!
Post by Dublfase on Sep 24^th, 2006, 8:10am

So here it is, 4:27 am. The throbbing on the left side of my forehead and my temple is out of control. I've been up for the last 45 minutes, in absolute agony. I've walked around my house about 5-6 times and drank a half of gallon of water. I'm afraid to take another Maxalt for fear that I will OD. It's taking me a while to write this post because I'm holding my left eye shut and putting my head in my lap every minute or so. I'm not sure that I can deal with this. This is horrible. Is this karma for bad things that I have done in my life? Am I being punished?...

4:33am...and just like that it's gone. Like I said earlier, I'm not sure that I can deal with this.

Back in 2003, I got this excrutiatingly painful headache out of nowhere. I had fallen asleep at work (in the Navy on a Nuclear Submarine) and woke up to this horrible pain. I'd never had a serious headache before in my life prior to this moment. Long story short, after being seen by Neurologists, I thought I had developed migraines. Negative MRI made everyone think I was faking. Nonetheless, I was put on a regimen of different drugs. Imitrex, Pamalor, Topamax, Maxalt...the list goes on. No rhyme or reason to the occurences. My doctor said, "keep a journal." Yeah, the first thing I want to do when my head is about to throb to explosion is pick up a pen and paper. I've never been good at following directions, so my drug regimen suffered. I just can't remember to take 1 pill for 1 1day for 1 week, then 2 pills for 1 day for 1 week, then 3 and so on. Back then, the headaches only lasted a month or so. Then they were gone. Packed all my drugs in a box and put them away somewhere.

Fast forward to about 3 weeks ago. No longer in the military, moved to new city. I'm on a plane to Chicago. I wake up in my uncomfortable seat with an even less comfortable headache. First one in a long time. What's going on? Luckily I carry a disgusting Maxalt with me more times than not, but this time it's in my checked bag. The pain just magically goes away after about 30 minutes. I have another one later on that night. Same situation. This time I take a Maxalt. My wife says, "It's gotta be lack of sleep." Long story short again, things have been rough ever since then. 2-3 a day, with at least one waking me up in the middle of the night. Where's that box of drugs that I packed up years back?

I look up headaches on Web MD one night because I just can't take it anymore. I see these things called cluster headaches. As I'm reading the list of symptoms, it reads like that journal that I never wrote. I do more research and find this site. I had no idea that there was a community for this BS!

I'm suppsoed to be seeing a new neurologist later this week. Hopefully I can get some relief from these things! I'm a little nervous that there is really no end to this! This is absolutely horrible!

Those of you who have decided to read this, thanks for allowing me to vent. I plan to use this site to learn from other's experiences and maybe list some of my own. Hopefully we can all get some relief and piece of mind. Until next time. At 5:07 am, Good night.

Title: Re: OMG...I Can't Take It!!
Post by brewcrew on Sep 24^th, 2006, 9:17am

Well, welcome to our "community for this BS."

I don't have a lot of time to tell you every detail of what you should do and not do. Take time to read EVERYTHING in the links to the left, especially "oxygen info." Take the cluster survey. It's good you're going to see a neuro. Ask him for a prescription for oxygen, and have him write "as needed for cluster headache" on it. The O2 doesn't work for everyone, but it works for most, it's cheap, and it's safe.

Good luck. Again, welcome to the 7th circle of hell. There are lots of compassionate and knowledgable folks around here. You will eventually figure out what you need to do/take to combat this thing.

Now start reading.

Bill

Title: Re: OMG...I Can't Take It!!
Post by Bob_Johnson on Sep 24^th, 2006, 9:17am

Hope your neurologist has experience/special interest in treating headache. We have too many folks here who find that their doc lacks the needed experience/skills. Suggest you call te office and directly ask about the doc's background (and you don't have to speak to the doc to get this information).

Now, it's time to start learning about what your options are.

Start with: Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Using this document as a tool to guide your discussion with the doc will reveal how receptive this man is.
-----
Then, suggest you start reading/learning:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Finally, start to practive stopping this noise about your inability to follow directions (meds) and tolerate difficulty. It's self-defeating! No one who could do your Navy job is so "unable".

When you are feeling better, start to explore the buttons on the left. Some excellent leads to help to be found there and you will find much support and caring from the folks here.

Title: Re: OMG...I Can't Take It!!
Post by Carl_D on Sep 24^th, 2006, 9:22am

Hi Dubl. Sorry you've got the CH, but glad you found us.
When you visit your Neuro, ask him about o2 therapy to abort CH, and also ask him about prevents. One combo that works for alot of people is Verapamil and Lithium. However, Lithium made me very ill, so I just took Verapamil and it seems to work on its own without the Lithium.

I hope it breaks for you soon.

Peace,
Carl

Title: Re: OMG...I Can't Take It!!
Post by TxBasslady on Sep 24^th, 2006, 3:17pm

No, you're not being punished for past deeds.

If you have CH, you'll need to learn to deal with the pain. There's lots of meds out there to help keep the pain under control. You'll need to take these meds as prescribed, or you'll get no relief.

I see you live close to Phoenix. We have some other sufferers here on the board who live in your area.

I hope your doc appointment is productive. Let us know what you find out.

Jean

Title: Re: OMG...I Can't Take It!!
Post by Dublfase on Sep 24^th, 2006, 4:46pm

Thank you everyone for all your great feedback.

First off, let me apologize if I offended anyone with my "community for this BS" comment. It was the pain and frustration talking at 5am.

There definitely is alot of good reading on this site. I just have to find time to weed through it all (hectic work schedule). I definitely plan to ask my neurologist a million questions and I want to say thank you to Bob_Johnson for providing me with material. I will definitely take that with me. I just hope that I can last that long!

Quote:

Finally, start to practive stopping this noise about your inability to follow directions (meds) and tolerate difficulty. It's self-defeating! No one who could do your Navy job is so "unable".

Yeah I know. Thing is, I wassn't taking this matter a seriously as I should have back then. I realize now that it's crucial to "follow directions."

Quote:

Hi Dubl. Sorry you've got the CH, but glad you found us. One combo that works for alot of people is Verapamil and Lithium. However, Lithium made me very ill, so I just took Verapamil and it seems to work on its own without the Lithium.

Thanks for your sympathy. I wouldn't wish this on my worst enemy. My friend asked me if I'd rather win the lottery and have CH or not have CH at all...I'm still thinking about it. LOL! Anyway, how did Lithium make you ill? I heard a little about the treatment, and I was kinda reluctant but I still plan to ask about it.

Quote:

No, you're not being punished for past deeds.

If you have CH, you'll need to learn to deal with the pain. I see you live close to Phoenix. We have some other sufferers here on the board who live in your area.

I hope your doc appointment is productive. Let us know what you find out.

Yeah, I was hoping that my karma wasn't that bad. It's funny...I thought that I could deal with the pain. Typically, I can just lay there and toss and turn for a minute and be ok. Last night was the worst pain I've felt thus far. From what I understand, there's a guy that works at my job who suffers from CH. I have yet to talk to him though. I will definitely let you guys know how my appointment went.

Title: Re: OMG...I Can't Take It!!
Post by TxBasslady on Sep 25^th, 2006, 4:29am

on 09/24/06 at 16:46:28, Dublfase wrote:

First off, let me apologize if I offended anyone with my "community for this BS" comment. It was the pain and frustration talking at 5am.

It's funny...I thought that I could deal with the pain.

No apology needed. We've all been there...and it's understandable that it's frustrating.

You can deal with the pain! We're here to help you with that part.

Someone here 24/7....so when you have a question...or if you just want to vent...someone will listen.

Vibes to you from Texas,

Jean

Title: Re: OMG...I Can't Take It!!
Post by brewcrew on Sep 25^th, 2006, 7:28am

As Jean said, no apology necessary. But around here, we don't deal in sympathy (as in, "Oh, that poor, poor Dublfase."). There is, however, plenty of empathy to go around (as in, "Been there, done that, outgrew the t-shirt."). That's just one of the great things about CH.com - Every one of our brothers and sisters here knows exactly what you are talking about.

Everybody here has been dealt the same hand, and it sucks. That's why I prefer to look at this place as my community of saviors. I know it's just semantics, but I think you probably already know exactly what I mean.

Welcome, brother

Title: Re: OMG...I Can't Take It!!
Post by BB on Sep 25^th, 2006, 8:58am

Hello from Sydney , Australia :)

Your story is so much like my DHs its amazing. 2003 was the last time he became very unwell with a lot of weird symptoms from severe headaches to sweating to light sensitiveness to memory problems. He went to various doctors and was diagnosed and treated for all sorts of things including chronic fatigue syndrome! Of course nothing worked. He was so frustrated in the end he threw all the meds into the bin and was magically better. Little did he know it was just the cycle ending itself !

He then merrily went on with life and we met and got together 4 months ago when bang it hit him out of the blue. This time the pain was so excruciating and it came exactly at the same time each day that the diagnosis of cluster was made by day 3, it was just classic.

Day 5 I got onto this Board and we have found our extended family here since. The support is tremendous and the understanding unrivalled. Its such a huge relief to be able to just say OMG it was a kip10 and everyone would understand exactly what that means.

Since then DH has been through the mills with CT scan, MRI scan, blood tests and even a lumbar puncture. He is now on oxygen, verapamil, lyrica and imigran.

Although his cycle is still going but the hits are easier to control and he is not so fearful of them anymore. We take each day as they come and he has started to learn to continue life as normally as possible and just deal with the hits when they come.

Likewise you will also become a "warrior" not a "sufferer" and life will be good again.

Hang in there and dont hesitate ever to ask, whinge, joke, laugh ...with the rest of us. Do read as much as you can, its amazing how much better you will feel just by understanding how different things work.

Painfree wishes to you both. Please tell your wife to come here also, we will give her a great big hug and a welcome.

Take care

Annette

Title: Re: OMG...I Can't Take It!!
Post by georgej on Sep 25^th, 2006, 11:12am

Good morning. Hope this finds you after an easy night.

It's not a matter of "punishment"--things don't work that way, except in fiction. There is no reason hidden in pain, no purpose in suffering. The temptation is strong to search for meaning. I realize that. I think that inevitably it's an impulse that all human beings share, but it's a false impulse. There's nothing there. It just is.

I'll second what brewcrew said regarding sympathy vis a vis empathy. You won't find sympathy here, but you'll find something much more useful--real help in dealing with pain. Not only have you found a community of people who truly do understand what you're faced with, but you've discovered a wealth of information and experience. Whether it's a matter of finding the right combination of treatments to help, or whether it's simply a matter of coming to grips with your condition in life, you'll find it here.

BB's point about the difference between a victim and a warrior is an important one--a victim allows circumstance to destroy him. A warrior accepts the hand he is dealt, and turns circumstance to his advantage.

You can too.

There's much to be learned in your very personal war with the beast, but if there's only one thing I can pass along to you, it's that you shouldn't fear it. As the saying goes, "fear is the mindkiller". Fear can increase your perception of pain, if not the pain itself. Learn to accept a hit, deal with the pain, and move on. It's not easy, and it's not learned overnight, but it can be done. When you've gotten to that place, you'll discover that you can cope with CH one hit at a time, one cycle at a time. It will no longer be a dominant fact of your life, but only a part of what makes you, yourself.

It can weaken you, or it can make you stronger. The path you choose is up to you.

Best wishes, and welcome,

George

Title: Re: OMG...I Can't Take It!!
Post by Linda_Howell on Sep 25^th, 2006, 12:44pm

I don't know why you felt the need to apologize for the BS comment.

I personally think cluster headaches are BS also. :-/ If I see your name here when I'm on-line in the middle of the night I will PM you if you want to talk or ask questions.

We're all here for you.

Linda

Title: Re: OMG...I Can't Take It!!
Post by Callico_Kid on Sep 25^th, 2006, 9:32pm

Welcome and ditto to those above.

You CAN handle this. I learned from my wife's LaMaze classes that to handle pain you have to stay in the moment and deal with what is going on at that moment and nothing else.

You will find little sympathy here, and NO pity, but you will find a lot of empathy as was already mentioned. Feel free to post questions, observations, or just communicate with others who know where you are coming from and understand.

You will find a letter to employers, friends, and family at the top of the getting to know you section that is very helpful for trying to help those around you understand what is going on.

Jerry

Title: Re: OMG...I Can't Take It!!
Post by brewcrew on Sep 25^th, 2006, 10:01pm

on 09/25/06 at 21:32:45, Callico_Kid wrote:

One note on sympathy: We will tell you that we know it hurts (because we do). Some people call that sympathy. I call it empathy, because we do feel for you as we've been there ourselves and don't wish this kind of pain on anyone else.

We're sad that you had to come here, but glad you found us.

Title: Re: OMG...I Can't Take It!!
Post by MJ on Sep 26^th, 2006, 2:39am

"OMG...I Can't Take It!!"

Like they say and DO above.

Yes You Can. Just sidestepping along the way.

Welcome.

Title: Re: OMG...I Can't Take It!!
Post by Sandy_C on Sep 26^th, 2006, 5:57pm

Re: OMG...I Can't Take It!!

I know that this heading was posted while you were in terrible pain. But, my response to this heading is

YES YOU CAN!

You can, because you're strong. You may not think that right now, especially during a hit, but you are.

You have come to a place where you can get information on CH, learn about different ways we've found to live our lives with CH, a place to vent, ask questions, or even just post stupid jokes. You have come home.

Welcome.

Sandy

Title: Re: OMG...I Can't Take It!!
Post by Edski_1 on Sep 26^th, 2006, 9:51pm

Ditto on the you CAN take it. :)

One thing I try to keep in mind durring bad attacks is that these are not fatal. Another thing is that it will pass (although my headaches morph into "migranous" phases where they can last at lower pain levels for 12-16 hours...those suck too!)

Most folks use oxygen or a triptan (Imitrex, Zomig, etc...) as an abortive. Preventatives have a lot of options too. But don't expect to find an efective treatment right away. It sometimes takes experimentation, and unfortunately failed "experiments" here equal pain that most people cannot comprehend.

Title: Re: OMG...I Can't Take It!!
Post by Jonny on Sep 26^th, 2006, 10:02pm

on 09/26/06 at 21:51:29, Edski_1 wrote:

Ditto on the you CAN take it. :)

Ditto, unless you punk out!

Hang the fuck in there, lots of folks have it worse!

Title: Re: OMG...I Can't Take It!!
Post by alchemy on Sep 26^th, 2006, 10:24pm

Hey Dublfase, sorry your having a rough time. i saw where Jean said you live in Buckeye. i'm up in N Phx by Cave Creek. drop me a pm anytime i'll help you anyway i can.
jim

Title: Re: OMG...I Can't Take It!!
Post by chopmyheadoff on Sep 27^th, 2006, 6:51am

chin up lad - iv been close to the edge myself !!

for me it was verapamil and imitrex shots that saved me but there are many many treatments available, its all about finding out what works for you.

youve found a place to vent now
ask anything you need to know - welcome

Title: Re: OMG...I Can't Take It!!
Post by LeLimey on Sep 27^th, 2006, 8:04am

What meds have you used dbl? how long do your cycles usually last? wht meds we recommend depends on how long your cycles last as in some cases cycles may be over before some meds will kick in.
You definitely need abortives such as Oxygen but bear in mind that non medical options can be very effective too. Ice or heat, it varies for all of us as to which works are very effective and I positively swear by Red Bull or its generic equivalents of taken soon enough. If you neck a can at the first twinge, as fast as you can that lovely caffeine and taurine turbo boost will zap your swelling blood vessels right back into submission and the pain will just vanish (very technical explanations huh?! ;) )
We are here for you though and we will help, you'll never be alone with this again.

Helen