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Joshl924

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new to CH and this board
Mar 13^th, 2011 at 6:11pm

So this all started about a month ago. Im in grad school and this is near finals time, if something doesnt happen soon Im going to be in alot of trouble, any suggestions?

My one question is this. Since this all first started I have also had a very sore neck. My range of motion is limited. This goes on the whole time whether Im having an episode or not. Has anyone else experienced this. This symptom is my only anomaly and everything else is totally consistent with the "beast" as you call it..

Any lawyers out there? did you have this in law school? what about later on? What do you do?

anyone tried chiropractors? Acupuncture? rolfing? CST? or any other type of alt treatment that they had some success with?

Thats about it. thanks for listening Sad

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Joshl924

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Sorry I guess Im supposed to describe my exp
Reply #1 - Mar 13^th, 2011 at 6:35pm

So it all started about a month ago, mostly in the middle of the night but not all of them have been. Since it began it has been hell I get maybe one day of respit. I feel like some sort of brain worm is trying to bore its way out my head emerging in the right temple area...

This pain is easily the worst I have ever had in my life. This is about the worst thing that has ever happend in my life. If this goes away and I can just have my life back I wont waste it.

Im pretty destitute.... please see my original message. I repeat becasue I am concerned; has anyone had the constant sore neck throughout a cycle?

thanks for listening

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George

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Re: new to CH and this board
Reply #2 - Mar 13^th, 2011 at 8:04pm

As for the sore neck, yes--I get it too. It's a pretty common side-effect. By no means universal, but pretty common.

Success with any sort of manipulation of the spine or accupuncture has been very limited in the experience of most here. It's never done me any good, personally.

Please click on the "oxygen info" link on the left, and read it thoroughly. 100 percent oxygen at high flows has given many of us our life back during a cycle.

Sorry you had to find us, but welcome, nevertheless. Others will be along soon with more detailed suggestions that you may find helpful.

Best wishes,

George

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Re: new to CH and this board
Reply #3 - Mar 13^th, 2011 at 11:49pm

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This is the link George was speaking of. I'm 51, a 33 year CH sufferer, episodic. I went from 90-120 minute rides, to 6-8 minute aborts just huffing pure oxygen.

The standard treatment for CH is a prevent med, one you take daily while in cycle, to reduce the number and intensity of your hits. Verapmil is the typical first line prevent, I use Lithium, Topomax also has a loyal following.

For abortives, what you take once an attack starts, you have your imitrex injectables, very fast but VERY expensive, imitrex nasal spray, almost as fast as the injectors and much cheaper, and then my favorite, Oxygen.

Go to the medications board, and check out the link "123 pain free days and I think I know why." It's a new regimen somone stumbled onto, that's suddenly showing some remarkable success. For a broke college student like you, it might be right up your alley. It's just over the counter supplements.

Then start reading like crazy. Knowledge is your friend. Your best bet of course is working with a headache specialist neuro, any chance you're at a hospital type college, or at least at a college that offers you some sort of medical coverage?

Joe

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Re: new to CH and this board
Reply #4 - Mar 14^th, 2011 at 12:31am

Josh, welcome to CH.com. Please listen to what George and Joe have posted above me. There are treatments for CH, but in most cases, CH is a life long illness, so become your own expert about CH.

We have found that expecting a Dr to fix you will only delay the reality of finding the best treatments for CH. Take what has been given you and learn more. Most Doctors have little knowledge about CH so you will, most likely, have to teach them if they are willing, if not find a Dr that will listen. A "Headache specialist" is our best chance of understanding.

I can't stress enough, take what has been given you above as wise advice.

Don't run away, we're here to help, this site has more info than 90+% of Dr's.

All the Best, Don

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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Re: new to CH and this board
Reply #5 - Mar 14^th, 2011 at 1:02am

Josh,
Welcome to the gang! We're here for you.

I second everything everyone has already said. I might add that a Prednisone taper of two weeks duration is commonly recommended by members of the board here as being of considerable help while a simultaneous prescription of Verapamil is ramped up. For me, the Prednisone (I was given only a week taper by my Doc - didn't know any better at the time) was a miracle, not a single hit in those five miraculous days.

As to alternative treatments: Among other things, I'm a massage therapist (I do therapy, not the "fluff and buff" spa kind). I've tried Chiropractic, all kinds of deep tissue massage and CST and none of that has helped one lick. For me, acupuncture is a mixed bag but, still it's not a cure or preventative. So don't even waste your time on those. Do not pass Go, go directly to Oxygen and or the Prednisone/Verapamil route.

As to the sore/stiff neck I get that too. Massage therapy does help with that part at least.

Also the vitamin D3/fish oil was a hugh help, give that a serious look and try it out. We'd love to know the results you have with that.

Hang in there! You will feel much better once you get your meds up to speed!
-Gary

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Joshl924

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Re: new to CH and this board
Reply #6 - Mar 14^th, 2011 at 7:32am

Ahh,

well, guys Im still in the phase with my doctor where I have an MRI today to rule brain tumor or anything else.... the specialist "nuero" that my doc sent me to has diagnosed me with the beast and prescribed me gavapentin sp* some sort of anti convolusive. Anyone try that?

At least the sore neck is something you guys are aware of...

Oh well... If I cant get this cycle under control soon I wont be able to take my finals and then my life is pretty much over.

anyone ever dig into the psychology of this?

Ill check out the o2 immediately

thanks alot

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Re: new to CH and this board
Reply #7 - Mar 14^th, 2011 at 8:12am

Hi Josh

These guys here are the cream of Clusters, they are all seasoned Vets...
The advice you will get on here is second to NONE.

Some advice given to me on a completly different 'Pain' forum was...
'We don't do 'IF's here!...
WHEN, you get this under control.....
Unfortunately for you (and all of us here) this is now a part of your life....
It's not over, just different from now on...
Deal with the beast Josh, we will help you do this....

Strength to you

Gary

"An old Wolf may lose his teeth, but never his nature.."

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Joshl924

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in that case, Im getting kind of nervous
Reply #8 - Mar 14^th, 2011 at 9:35am

So... the fact that these are not likely to go away is scaring the heck out of me.... Does anyone know of any cases or even heard of any where someone had one cluster and that was that??

I dont know if I can mentally, or professionally handle that. The pain while great goes away eventually, but it leaves me broken and unable to do the things I need to do in order to graduate and even then I dont see how I can maintain a job with this going on.

Any lawyers on the site?

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Batch

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Re: new to CH and this board
Reply #9 - Mar 14^th, 2011 at 9:57am

Hey Josh,

You're going through one of the toughest times a CH'er faces... assuming you actually have CH. Having said that, you're fortunate to be going through the differential diagnosis process that can rule out some of the more onerous possible causes for your present symptoms.

Should your diagnosis come out as CH, it's a good idea to print out the following link and take it to your next appointment. It's the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.

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It lists the top medications used as acute treatments for CH attacks and the preventatives that can help control the frequency and intensity of CH. This standard of care was developed by a task force of neurologists who number among the brightest minds in he world experienced in the diagnosis and treatment of CH. They treat more CH'ers in a week than most neurologist see during their entire career.

You'll need a diagnosis and a prescription for oxygen therapy and Joe has already given you a link to this very effective way of aborting CH attacks rapidly, reliably, and without any side effects.

As far as what to do in the mean time so you can get through finals... I've been taking a daily anti-inflammatory regimen of 3000mg. Omega 3 Fish Oil, 10,000I.U. vitamin D3 and a couple calcium citrate tablets formulated with vitamin D3, magnesium and zinc since last October and have been pain free ever since. Several others here at CH.com have started this regimen and are reporting favorable results. Call your doctor about starting this regimen.

Take care,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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37-41withrestrictions

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Re: new to CH and this board
Reply #10 - Mar 14^th, 2011 at 10:05am

Hi Josh

I'm no expert in CH.. but have suffered with them for 15+ years,
I have a full time job in an extremely stressful field of psychiatry, I have worked shifts, run wards and intensive care units and juggled family life.
Up until last year I didn't actually know what I had, once I was diagnosed the fear and realisation of what it is hits home.... I'm very much an ostrich....head in the sand and it will all go away....well it doesn't....it's here to stay, it's part of me and I am doing as much as possible to educate myself into what works for me.
The information on this site is fab but not all of it works for everyone, try out different things be aware they may not work immediately.
Print off the advice and learn as much as you can.

Please don't do anything drastic in relation to your education, don't drop out... as you say the pain goes away eventually, I know its impossible to think of that when your climbing the walls and I know the feeling of dispair....
Keep coming here and using the support this place offers, this place is my sanctuary

Take care
Sue

If you see something you want.. reach out and grab it with both hands.....just watch out you dont get a smack in the chops for grabbing the wrong thing!!!

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Re: new to CH and this board
Reply #11 - Mar 14^th, 2011 at 10:46am

Hang in there Josh!
There's no psychology to this beast, except psyching yourself up to do battle against it! I was more scared when I didn't know what I had. Once I was diagnosed with CH I was able to actually do research on it and the various medications I needed to make the cycle manageable (most of which I found on this message board).
So please don't despair. We can be the best support group in the world because we all know what you're going thru!
-Gary

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wimsey1

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Re: new to CH and this board
Reply #12 - Mar 15^th, 2011 at 7:52am

Josh, Gabapentin is an old, and rather useless, approach to CHs. It's great for some things, like neuralgia, but totally useless in my opinion for dealing with the beast. At one point I was up to 3600mgs/daily and while the world was soft and fuzzy, so was my brain and the pain of a hit was just as intense. Bunches of other stuff that are more effective and at the top of the list is an energy drink (Red Bull, Monster, 5Hr etc) chugged immediately upon onset of attack followed by therapeutic use of O2.

As to these things being around forever....well, forever is a long time. You have the pain right now, and so right now, you're mission is to find the best prevents and abortives you can possibly use, in order to whip this beast into submission. Sure, this may be your one and only cycle. It's happened. But deal with this cycyle and don't let fear rule the day. Blessings. lance

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Joshl924

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thanks
Reply #13 - Mar 15^th, 2011 at 1:31pm

Thanks for the kind words.

The energy drink is something I will def try, at least for day time episodes... I dont think that I can dive into one at like 2 am... Do you guys do the energy drink thing at night?

o2
Do you guys and gals think that 100% rx O2 is necessary? Can the over the counter 90-95% at least be somewhat effective until I can convince my doctor to get me a prescription for it?

The following seems to be a result of the gabitentin sp* but I wanted to get some of your thoughts on this. After starting those meds I would sometimes get an episode in the morning and it lingers and is less effected by my pain meds and kind of lasts all day... Anyone experience this?

I made an apt with a headache specialist so... we'll see..

thanks for listening

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Re: new to CH and this board
Reply #14 - Mar 15^th, 2011 at 2:22pm

Not sure I understand the over the counter 90-95% question. Meds will control a large percentage of your attacks, a decent prevent should kick down the number of attacks, Imitrex injectables or nasal sprays will abort most attacks.

When we talk about 100% oxygen, we're describing mostly the delivery system. You need to use a Non Re Breather mask, as rebreather masks allow you to "rebreathe" the air you exhale, this will substantially increase the abort times, a bad thing! Nasal canulas are worthless because they let in outside air. Low flow rates are a killer because they can't keep up with your breathing rates.

The greatest thing about oxygen in my book is it lets you pitch most of your meds, especially those narcotic pain meds. We're a little quick to condemn those, as several on this board have shared personal experiences of severe addiction, withdrawal hells, etc. Narcotics really have no place in the treatment of CH which is a lifelong issue.

I use the energy drinks in combo with my oxygen as it speeds the abort times and delays any comeback attacks. I do NOT use it at night as I'm caffiene sesitive and wouldn't sleep the rest of the night. Just 02 on the night hits.

Hope that answered your questions.

Joe

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Joshl924

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Some more questions
Reply #15 - Mar 17^th, 2011 at 12:26pm

Triggers: Ok. so I'd like to know if all triggers bring one on immediately, or if there is such thing as a latent trigger...

What I mean by this, say I am prescribed another medication that Ive been on for the last 4 or so years. Ive taken the medication and not had an episode, Ive not taken and still had an episode, but Im wondering if its possible that A trigger (not the trigger) is when it leaves my system? is that possible?

Also... do we know anything about gas causing cluster headaches.. It turns out I had a very minimal gas leak in my small apt for overe 6 months... Is it possible that caused it?

I dont know.. Im just grasping at straws here... getting weaker both mentally, spiritually and in some respects physically....

can you guys tells me how prevalent nuts and banannas are as triggers?

thanks...

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Re: thanks
Reply #16 - Mar 17^th, 2011 at 12:38pm

Joshl924 wrote on Mar 15^th, 2011 at 1:31pm:

Thanks for the kind words.

The energy drink is something I will def try, at least for day time episodes... I dont think that I can dive into one at like 2 am... Do you guys do the energy drink thing at night?

o2
Do you guys and gals think that 100% rx O2 is necessary? Can the over the counter 90-95% at least be somewhat effective until I can convince my doctor to get me a prescription for it?

The following seems to be a result of the gabitentin sp* but I wanted to get some of your thoughts on this. After starting those meds I would sometimes get an episode in the morning and it lingers and is less effected by my pain meds and kind of lasts all day... Anyone experience this?

I made an apt with a headache specialist so... we'll see..

thanks for listening

Why question the expertise of so many that have gained the first, best, most benign abortive available? It works.

Potter

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Re: thanks
Reply #17 - Mar 17^th, 2011 at 1:45pm

Joshl924 wrote on Mar 15^th, 2011 at 1:31pm:

The energy drink is something I will def try, at least for day time episodes... I dont think that I can dive into one at like 2 am... Do you guys do the energy drink thing at night?

Some people actually chug one for a wake up hit, then go back to sleep! Your mileage may vary of course. I'd say it's only worth trying if you find that an energy drink can knock down a daytime hit.

Joshl924 wrote on Mar 15^th, 2011 at 1:31pm:

o2
Do you guys and gals think that 100% rx O2 is necessary? Can the over the counter 90-95% at least be somewhat effective until I can convince my doctor to get me a prescription for it?

Is that the canned O2 sort of stuff? I haven't tried it - I've seen the occasional CH'er report some success with it, and I can see that you're just looking for a stopgap until you can get the 100% O2, so I suppose if you can afford it in the meantime, it might be worth a shot since it should be harmless.

I'm guessing here that the old "put your nose up to the blasting car A/C vent and deep breathe the freezing air through the nostril on your CH side" trick might be just about as effective. Well it would be for me. Again, YMMV. Cheesy

Cheesy

If the O2 prescription becomes too difficult to procure, don't despair too much - many here just go get the same O2 cheaply from a welding supply place without prescription. Cool

Cool

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

bejeeber

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bejeeber

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Re: Some more questions
Reply #18 - Mar 17^th, 2011 at 1:51pm

Joshl924 wrote on Mar 17^th, 2011 at 12:26pm:

Triggers: Ok. so I'd like to know if all triggers bring one on immediately, or if there is such thing as a latent trigger...

What I mean by this, say I am prescribed another medication that Ive been on for the last 4 or so years. Ive taken the medication and not had an episode, Ive not taken and still had an episode, but Im wondering if its possible that A trigger (not the trigger) is when it leaves my system? is that possible?

Also... do we know anything about gas causing cluster headaches.. It turns out I had a very minimal gas leak in my small apt for overe 6 months... Is it possible that caused it?

I dont know.. Im just grasping at straws here... getting weaker both mentally, spiritually and in some respects physically....

can you guys tells me how prevalent nuts and banannas are as triggers?

thanks...

Episode triggers can be tuff to figure out for sure, especially since episodes most often seem to happen with out any external trigger. Sorry, I don't know about the natural gas thing, I just know that gasoline fumes can trigger a hit for many of us.

After poring over thousands of posts here I don't recall seeing mention of bananas and nuts as triggers, so hopefully you're good to go with those.

« Last Edit: Mar 17^th, 2011 at 2:08pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

bejeeber

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Joshl924

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Re: new to CH and this board
Reply #19 - Mar 17^th, 2011 at 3:08pm

thanks beej,

vietvet, beej answered your question: just want to see if its worthwhile as a stopgap until I can get rx. 100% I wouldnt question anyone

Can I ask about side effects of imitrex? I dont mind needles and if that is the fastest abortive Ill gladly take a little stick.

With regards to energy drinks, I know taurine is something we are looking for, I hate redbull so does anyone have suggestions on brands that work for them?

Anyway... it makes me feel better that people who know what I am going through are reading this.

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bejeeber

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Re: new to CH and this board
Reply #20 - Mar 17^th, 2011 at 3:33pm

I've used a ton of imitrex in injection form since it hit the market, and haven't experienced side effects, but my luck appears to be an exception, as many have reported racing pulse and other unpleasant sensations, and some believe that imitrex can make subsequent attacks more severe and even prolong an episode.

During my last episode I used O2 as the first choice abortive and only whipped out an injection if all else failed. That worked well for me, and that's why I have hopped jauntily onto the O2 bandwagon. Cheesy

Cheesy

Although I was skeptical at first, because they don't fully list their ingredients, I've found that the 5 hour energy shots are good, and word is that they have caffeine/taurine comparable to red Bull. Of course the Red Bull shots are also much easier to quickly consume than the drink cans. If you don't mind a big honkload of liquid, Monster works too.

« Last Edit: Mar 17^th, 2011 at 4:04pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

bejeeber

bejeeber

Enter your address line 1 here

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: new to CH and this board Reply #21 - Mar 17^th, 2011 at 3:40pm My tank Is a leased tank from Welders Supply. One time ($200.00) with a oxy. reg. liberated from a local refinery. My tank(full) sits in my shop just waiting for my next cycle. I've been pf for 2300 days give or take, but just knowing I have the weapon gives me great comfort. Gitterdone. Potter
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wimsey1

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Re: new to CH and this board
Reply #22 - Mar 18^th, 2011 at 7:39am

My drink of preference is Monster. I just like the taste. And I'm not sure we have a consensus on whether or not volume or carbonation are important to the process. Those who can't "stomach" carbonation find the little shots effective. I find chugging a large can of Monster and hitting the O2 to be the way to go. Try them out. It's only a headache Cool

Cool

Blessings. lance

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Re: new to CH and this board
Reply #23 - Mar 18^th, 2011 at 4:27pm

wimsey1 wrote on Mar 18^th, 2011 at 7:39am:

It's only a headache Cool

Cool

It makes an incredible difference as to who says "It's only a headache". From someone who doesn't have CH (or a supporter), it just shows how little they understand.

From someone who really does understand, it can be seen as an act of defiance to the beast, showing how no matter what is thrown at them that they can and do get through.

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Joshl924 CH.com Junior Offline I Love CH.com! Posts: 84	Re: new to CH and this board Reply #24 - Mar 19^th, 2011 at 10:35pm Does anyone know a resource online that can help me physically use the regulator and mask if I am forced to buy my own without an rx.. I just dont know how to use that stuff ..... thanks
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