Hi all.  I go by TeeJ.  I am 34 years old from the US, living in PA.  I work in I.T. - have a great job, great family and a generally happy life.  My baby daughter was born just about 5 weeks ago, our first.  Life is really good, truly blessed. 

Last weekend, I hurt my back in the yard - no biggie it happens.  I decide to go to bed early after some Advil and a lot of water- 10pm is pretty early for me, I'm a night owl.  Well I wake up at 1130pm that night feeling the pressure in left temple, behind my eye.  Not painful at first, just weird feeling.  I roll over and try another position... pressure builds.  A minute or two later, the pain starts, and its starts radiating through the left side of my head, from temple to jaw and back and forth.  I get out of bed and take some advil and drink some water.  Pain gets worse and worse. I had never experienced anything like before.  I thought I was having a stroke or aneurism.  I try to lie down and relax, taking deep breathes.  Nothing works.  Around 1am I am devastated.  I cry to my wife that I need to go to the hospital.  I drive myself - she is home with our baby daughter. At the hospital they give me O2 and some other drugs, nothing work.  They do a CT scan which shows nothing.  But the meds make me sleepy so I fall asleep around 0230 or so.  I wake up around 330am and the nurse ask me about my pain, which had been a 8-9 most of the night, i say its about a 5.  By 6am I am pain free.  They send me home and tell me to see my family Dr.

Sunday night rolls around - guess what happens right around 1130pm ?  Yup I wake up in agony.  This time I Google it - First result for left temple headache - Cluster Headaches.  I got it for sure - blood shot eye, feverish on left side of head.  This time it last until 3am.  Not much I can do , not running up another bill at the ER.  I just suffer for 4 hours. 

I get a reprieve Monday night.  No headache. 

Tuesday I go to work - back still causing me issues - I leave early to try to get better - get home around 10am - decide to lay on a heating pad and heal my back ...fall asleep...well wouldn't you know what happens at 1130am .  Just too weird the timing of these things.  Finally get an appointment to see my DR - he gives me meds...sumatriptan tablets 100mg. 

Well this brings me to tonight.  Around 1241am I wake up and know what is happening this time.  I get out of bed and find my pills which I keep by the bed.  Pop one so fast and drink a bunch of water.  And wait.  I get on my computer and start a log for these headaches.  Around 0123 the pain starts to fade.  What a relief.  But I know they will be back.  From everything I read, the possibility of them coming back is always there.

So I guess this is my sad story.  Most likely not new to anyone here, but its good to share and write it down.  Hopefully I will find comfort and support here.  I appreciate you reading and wish you all the best in your life.  I truly believe things happen for a reason, and I'm searching for the reason I am getting these headaches now, when I've never had them before.

Welcome to the board Teej.  Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers. In the early stages of CH in my 20's, the pills may have helped as my attacks built more slowly then. Now I have only a matter of minutes before it hits full force. That's why the 02 leans against my bed at night when I'm in cycle!!!


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

G'day Teej,
Their are are lots of triggers to onset CH's. In the main,         
processed foods and alcohol.I've also read, physical
exersize can also trigger a CH in some folk. Neck injury
is a complicated one as it can mimic CH's and fooled
many neuro's in the past. Also CH's seem to pop up
Spring and Fall in most cluster'es myself included.
my last episode was Spring 2012 but since being
on the D3 regime i hav'nt had an episode.
Hoppy.

Got another CH just a few minutes ago.  I've taken sumatritans 2 since 541pm yesterday (Had one at 3am this morning too) so I am scared to take anything now...guess I just have to deal with it.  Is it typical for headaches to happen more frequently during clusters?  Generally they were 24-48 hours apart and now they seem be getting more frequent...

Lizardqueen wrote. I'm in the same boat as you, your not
alone, we are all in the same boat as you, but i'ts more
like an ocean liner so you have lots of help to fight the
beast.                                                                              

Hoppy.

This past weekend was Hell.  I used 8 of my nine sumatriptan doses since last friday at 530.  I took today off work to recover and get some Dr appointments in and scheduled. 

Family Doc gave me more sumatriptan doses, but at 50mg so I can see if I need a full dose or not.  Didn't want to prescript injections.He didn't want to give me Verapamil for some reason, put me a Topamax instead 25mg.  He did refer me to a neurologist so that is hopeful. 

I went to Sam's Club today and got my supplements for the anti inflammatory regiment.  Dr also referred me to get my d3 levels, so I had the blood draw today as well.  Took my first dose today with lunch.  Also picked up some Melatonin as I had read it helps CH'ers get through the night sometimes.

My last attack was at 1030 last night and my last Sumatriptan knocked that down.  Overall, I feel positive today.  The real test will be tomorrow back to work and hope for a quiet night.

I'm waiting for the Neurologist consult to ask for oxygen and the imitrex injections since my Dr doesn't seem to have the knowledge he needs to treat me completely.  Felt I was wasting my breath talking about the vitamin D bit with him.  Wife said no to getting a welders tank for O2 - she thinks its dangerous.  So I'm hoping the Dr will prescribe O2 and I can get a regular medical type setup.  If things get really bad I'll get the welders tank and deal with the wife later

Any other suggestions?

Hi, TeeJ,

Good luck with everything. You can see where these things can get out of hand -- and quickly. I hope the vitamin regimen works for you. The Verapamil works pretty well for me. Good luck with the docs and hang in there. You have lots of friends here.

rep

TeeJ,  I'm sure it's different for everybody but for me it's those sharp little jabs or twinges on the side of my head that last from a few seconds to 10 or 15 min. then go away or not. I get another kind also, a dull "black" steady pain on the top front side of my head that can go on for hours. The key is to learn your own patterns. For me  it's when I start getting a pin prickly feeling on the top side of my head-- I'd better be close to my ox tank. It's almost the same feeling I get after a cluster has drained out.     Rebounds for me are the real monsters I get after successfully aborting hits all night through the use of drugs.  Preventing and aborting are two different things. I play with fire I guess by aborting and using ox if I get a rebound and it's worked for me through many cycles but I don't think most people here would recommend it. This cycle is bringing that message home but I may get away with it as the D3 / fish oil seems to be helping a lot   
       Sean

Thanks all!  Heres to hoping for a quiet night !

Sean McE wrote on Jun 3^rd, 2013 at 11:40pm:


Quite the opposite. We recommend you use O2 to abort any attack, rebound or shadow. The only way to stop a true rebound headache is to stop taking the offending medicine. Think here of what happens when you use nasal spray. The more you use it, the more you need it to open nasal passages. It creates its own cycles, which get shorter and shorter, until you cease its use entirely. Shadows are precursors and/or leftovers from a full-on hit. Use O2, by all means. blessings. lance

Finally got into see my Neurologist!  I had to keep calling and seeing if there were cancellations and today I got lucky.  She got me the proper O2 script and put me on Verapamil finally!  I feel so much better and feel that I am on the right track to managing my CHs now.  I am tapering down my topamax and starting my Verapamil tomorrow morning.  Careful to space it 8-12 hours away from my D3 regiment as noted on the post I've read on this board.  Thanks all!

I got a good one last night and I'm still tapering off my predisone - was kinda disappointed.  Yeah I am hopeful.  I think this O2 is going to be helpful as well - should have a tank by the end of the week once my insurance figures out what they are doing.

I have not gone back to the Docs yet - I actually think things are improving - managed to get through last night, this morning and lunch without a major episode - have not had to use my imitrex yet today - maybe the d3 and verapmil are starting to take affect? Time will tell - o2 comes next week unfortunately - can't get any more time off work to go pick it up.