Hey guys.  I was referred here by a poster at another board who has a relative with clusters.

I'm 28, I live in Chicago, and I've had clusters for a very short time.  They started a month and a half ago, I was diagnosed by my PCP last week.  I see a neurologist in 2 weeks for the official diagnosis, and to start treatment.  Before this started, I never had a problem with headaches.  I've never had a migraine, and have had very few tension or sinus headaches.  I've been at a loss since I got them.  I've tried every otc painkiller/headache medicine and home/herbal remedy I can find and nothing helps.  I've been told by my pcp to take 2 extra strength Tylenol when I feel it coming on...but the problem here is I don't feel it coming on.  I'll be going about my business and suddenly I'll feel an excruciating, drilling pain in my left eye and sometimes into my temple.  All I can do is pace and cry.  I can't even lay down, that somehow makes it worse.

I know I haven't had them nearly as long as others posting here (and my condolences to those who have had them for so long) but after a month and a half, I just can't take this anymore.  I may be weak, but the quality of my life has dropped significantly since they started.

I feel like since my doctor thinks I can just take 2 tylenol and be done with it, the neurologist wont take me seriously either.  I feel pretty hopeless with these. 

Thanks, I don't have any Red Bull on hand, but I did grab a Mountain Dew at work when one started earlier.  It reduced the unbearable pain to just an annoying pain.  It went away after about an hour. 

But now one is starting again. 

Guiseppi wrote on Aug 4^th, 2010 at 2:46pm:



Thanks for the info.  I am not to keen on narcotic painkillers.  Aside from making me nauseated, I would like to be able to function in my daily life and they usually render me unable to.  Personally I don't see the value in solving a debilitating problem with a debilitating solution.  Nor am I a huge fan of relying on a short term solution for a long term problem. I'm looking over the oxygen info tab now...but I'm going to wait until my head doesn't hurt to do a thorough read.

I'll check out Clusterbusters when I get home, assuming that some of the 'alternative' things there are things I probably don't want to view at work.

I'm interested in oxygen primarily because people speak so highly of it, and I'm not putting anything into my body that isn't already there.  Is this something that has to be prescribed?  Is it expensive? Do you know if insurance companies cover this by chance?  Unfortunately my finances are tight.  I am fighting just to get my health insurance co to cover my inexpensive acid reflux medication.

I can't take Lithium, as I already take an anti-depressant and mood stabilizer that is successful and don't want to mess with it.  I'd really like to find treatment that wont cost me wellbeing in any other aspect of my life.  I really hope that is possible.  On the other hand, I'm willing to try anything at some points.  Also I read that SSRI's can help, but those make me very mentally unstable and make me feel suicidal so I can't just switch my anti-depressant to an SSRI and kill two birds with one stone.  I wish it were that easy.

I feel like if I come in armed with as much knowledge as I can, my neuro might take me a little more seriously.  The problem is, my head hurts too damn much most of the time to concentrate on a meager Google search.  So I apologize if I ask too many questions.  Also, I did this with my primary care doctor.  I came in with printed info, a headache diary, and told her right off what I thougth it was.  She just agreed and told me to take Tylenol, like previously stated.  I half think that she wouldn't have come to the conclusion herself since it's so rare if I hadn't handed it to her.  I'll happily hand a treatment plan over to my neuro if he'll sign off on it, I just don't know what it should be yet.  Being my own doctor makes me a tad nervous.

Good thing you don't like narcotics, because for this condition, they don't do squat. 

There are a lot of sufferers here to give you good advice (I'm a supporter of my CH husband - he's had them [diagnosed] for 20 years).

O2 should be your first line of defense.  It's mostly side-effect free and reasonably priced.  I can't imagine any doctor NOT prescribing it.  It WORKS!  My husband can abort an attack in under 10 minutes.  Now that he has the really high flow regulator, he can abort it in about 3 minutes.  The RIGHT equipment and procedure is a must.  Non-rebreather mask, high flow regulator, and hit the O2 at the first sign of an attack. There's no glory in trying to wait it out or tough it out.  There's only pain.  Don't let them talk you into an O2 concentrator, or a nasal canula.  You need the right equipment to fight this beast.

If you have a companion or spouse or friend who has helped you through these attacks, please feel free to send them here.  We support supporters here, too.  I can't tell you how important it is to feel part of the family.  Knowing one is not alone in your fight or your support is almost as important as the correct treatment.

Welcome home.

Take the O2 info posted on this site (see the yellow button to the left) and also perhaps some of the PDF's that Bob Johnson posts on the treatment board. Those contain medical studies etc - just the kind of stuff your neuro will want to see if he/she is not familiar with treating CH's with O2.

You're so far ahead of the game in getting diagnosed with CH so soon after your first series. Best of luck with the neuro appt.

Christy

I think some of the "odder" energy drinks might be regional (maybe not, but it's a guess).  We're near Milwaukee (so close to Chicago) and my husband likes Venom and NOS.

Guiseppi wrote on Aug 4^th, 2010 at 3:22pm:



Thanks again for all of this info.  I did read clusterbusters...it was very fascinating but I didn't quite understand the theory of how that worked.  I don't believe it doesn't.  The evidence is compelling.  My head hurt too much to grasp the science at the time.  It's good to know there are options available to me in case I get caught up in failed treatments for an extended period of time.

Like Denny, I cart around the E-Tank. Those soccer chairs the soccer moms carry to all the games? They are the perfect size to cart your E-Tank around with so no one is the wiser. When I was still working I kept an E-Tank in the trunk of my cruiser while on cycle. More then once I was driving to a call while huffing 02 to kill an attack! Cuts down on my sick leave useage.

Joe

Hi Oracle, nice picture.  Well you have gotten great advice and should be able to experiment and advocate just fine.  Now on to other important stuff.....

If it turns out you have our friend the clusterheadache then you will most likely have it for life at semi-regular intervals.  The sooner you educate yourself the less pain you will have.  I know you came to us in your cycle and the amount of time and energy you have for research will be limited until your cycle ends.  Use your pain free time wisely. 

You may get a good neuro and you may not.  If you aren't going the pharmaceutical drug route then you can fight effectively with caffeine, oxygen and the cluster busters.  Go check in over there if interested.  Since I checked in there over 2 years ago I have had only 2 attacks, not cycles, attacks.  That stuff is powerful and if you work the oxygen and caffeine in for shadows and stray hits then you will be doing pretty good.

Look at melatonin if you have nighttime attacks.

We can still lead mostly normal lives if we take control of our care.  Get your close family or caring friends on board if you can to help out.

Good luck!

--Shaggy

Just an update:

I saw my neurologist this morning, he was pretty quick in agreeing that it's cluster headaches.  He sent me home with samples of Zomig (nosespray) and Frova (pill) and a prescription for 12 days of prednisone and Topamax.  I'm to try the nose spray when the headache comes on, but no more than twice a day.  He suggested taking a Frova first thing in the AM to see if that wards off any morning headaches.  I'm to take Topamax every night as a preventative.

We're trying and erring with abortives, if the nose spray doesn't work we will talk about some injections and oxygen.  He said oxygen is great and can help, but he said he's had experiences where health insurance wont cover it unless we try other things first.

Looking forward to something working!  I had a not so severe headache on the way back from the office and tried one of the nose spray samples and it worked.  I don't know how well it will handle a severe attack though.

I don't understand what happened.

I left the doctor Wednesday morning, on the train home I got a headache.  Used one Zomig nasal spray sample. Success.  Went to work, didn’t have a headache again the rest of the day.  I took my first Topomax before bed.  I was to start them just in the evening at first in case they made me dopey but if I was fine on them, I could take one in the AM and one in the PM as well.

Thursday I started the Prednisone.  Six the first day.  I took them, I had some reactions to them (hot flushes mostly) but nothing serious and my head didn’t hurt all day until around 8pm.  By 8pm I’d have AT LEAST 5 headaches on a typical day.  This wasn’t a major headache but I used my other nasal spray sample.  Success. Took a Topomax before bed.

Friday I decided I would try a Topomax in the morning, I did.  Started to taper down to five Prednisone.  No headaches at all on Friday.  Took a Topomax before bed.

Saturday I slept all day.  I don’t know why.  I woke up in the evening – 7ish.  I didn’t take an AM Topomax because I’d slept through the morning, and I didn’t take any Prednisone because I was supposed to take 5 and I didn’t think I should take 5 all at once.  I did take a Topomax later in the evening (10-ish) because I was going to go back to bed.

By 11 pm I had the worst headache I’ve had since this whole thing started.  I was crawling the floors, climbing the furniture, pulling at my hair, sobbing, pushing at things, I didn’t have any nasal spray left.  I took a Frova but it did nothing.  It lasted about 45 minutes.  It was agony.  I wanted to go to the ER but I knew nothing could be done.  I waited it out, and since then I’ve been spent.  I was finally able to get to sleep but all day yesterday and today I’ve felt very disconnected and I’ve had constant pain.  Not agonizing like it was, but constant.  Excruciating comes and goes in seconds.  It gets worse when I bend over.  On Sunday I took a Topomax in the morning and picked up where I left off on the Prednisone (tapered down to 5) and took a Topomax before bed.  Today is Monday, I took a Topomax this morning and have tapered the Prednisone down to 4.  I called the neurologist and they said they would call in some of the nasal spray for me, but they haven’t yet.

Did I do something wrong?  Did the medicine do something wrong?  I don’t understand what happened.  I don’t feel dopey otherwise or weird otherwise.  Just pain.

As Joe said, I suspect it have something to do with the prednisone.  You probably would have been better off slowly taking those 5 during your waking hours.  Not a good idea to skip a day on a high dosage like that.  I sometimes wonder why I agree to the prednisone taper when i start my cycles.  I guess it's just nice to have a few PF days.  If the taper doesn't abort the cycle for me, more often than not the damn things come back with a vengance for a bit.  I've had it rough the last couple of days, but for the most part, O2 and imitrex injections are keeping these things from slamming me too hard.  Sunday was bad, I ran out of imitrex and forgot to go to the pharmacy.  My taper ended.  O2 didn't catch that one.  It came back and was PISSED!

Having said all that, I think you should take this into your own hands and find out from your insurance company what their policy is on O2.  A lot of good info on how to get the prescription here Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; Most of them will pay with the proper diagnosis.  Next, print out some of that info and bring it too him/her.  If he's still hesitant, find a new doc.  Helped me with my doc, now I'm hooked on O2