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Morning all...

Today my doctor told me I am suffering from cluster headaches.  I'm 38 and this just started...so I did what anyone with access to a computer would do...I check on line...and proceded to scare the hell out of myself!

I have skimmed through your site and it looks like a heck of a lot of good info...sadly some of the suggested treatments I can't use because of my work situation.  I guess I'd also like to know if he might be wrong!

I get instant bliding headaches on the right side.  My right eye feels like it's going to explode or get pushed out of my head!  My right nostril feels like someone shoved a plug in it.  It pain lasts for 30 minutes to almost 2 hours.  Some times I sit up and curl into a ball and cry...sometimes I pace...I've tried different things to make the pain go away but nothing really seems to work.  If I push really hard on my head, it eases up a little...but not for long.  :-[

Any thoughts? 

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Hi :)

Welcome :)

Well, it`s sounds like CH too me. BUT, you found the most effective treatment for it early, so the good news is you probably do not have to suffer and will be able to be in control. Most suffer this for years before they get diagnosed.

What have you been given as treatment?

Tingeling

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Tingeling...

So far they haven't given me anything.  THis has just started...was whining to a friend about these nasty headaches and she told me it was migraines!  We argued...and then made a $20 bet.  I won...i guess.  The says it's CH.  We talked about some things I have to change (bye-bye smoking).  At this point I'm trying to find out everything I can...it's kinda scaring me a little after reading some folks posts.  I don't have ANYTHING this sever...and I'm a bit scared that it might escalte and get worse  :'(

I'm a single mom with an awesome son...and I really can't be down for the count!

Mysti

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Mysti,

Sorry to hear of your diagnosis.

Your symptoms definitely sound like CH to me.  One predominant symptom is repeated attacks several a day usually.  Normally after a few weeks to around 2 months the attacks stop if you're episodic.  Chronics go on and on.

#1 Best attack stopper is breathing 100% Oxygen.

#2 Hallucinogens (small quantities only needed a few times a year)

You'll find that many on this board share your same concern with Hallucinogen use and our jobs.  If you do need to go this route a few encouraging words.  1) Most standard drug tests don't test for hallucinogenics.  2) The chemicals are normally in extremely small doses and your body expels them very quickly. 

Jeff

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Sorry, snuffy, but it definitely sounds like your doctor isn't wrong.  But folks here have learned to manage this thing and make it a whole lot less terrifying.  Plus, you picked a good time to get CH

(:D), because a reliable treatment of some sort, whether it's BOL-148 or a chip implant or some other amazing product of modern science, is right on the horizon, and also because people with CH have developed some treatments that work very, very well.

Thank goodness, too, that you had a competent doctor who recognized CH right away.  As you may have read here, so many people have been misdiagnosed and mistreated for so many years, with so much related, unnecessary suffering.

On to some things you can do . . .  

Your doctor prescribed oxygen, I hope.  It's the essential first-line abortive.  If s/he didn't give you such a prescription, that's the very first thing you want to address.  More info here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

You might already have read that quickly drinking a RedBull or Monster or some other energy drink at the onset of a cluster headache can stop them or keep them from getting worse.

I strongly recommend that you begin either the simple, inexpensive vitamin D3 protocol that has helped many, many people quickly and also lastingly, or the licorice root treatment that also has proven very beneficial for many.  Regarding the D3: You take about 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. That's it, except that many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness.  Many people start getting significant relief within a day or two.  The levels I listed above are the "default" levels--you might wish to adjust according to your own tolerance.  These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so.  To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0    The discussion board where that thread is posted is a very good source of "non-busting" information.

You can read about the licorice root method here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

If you can't use the "busting" method, then you can't -- and I think the other things I've listed here will surely keep your CH in check for now, or even permanently.  But it's kind of too bad that you can't bust, because with no history of taking the kinds of pharmaceutical drugs that impede busting you'd probably get very good results from it.  As is often said here, if the ingredients used for busting weren't unlawful (in varying degrees) it would surely be the first recommended form of treatment (after or along with oxygen) for CH.  Excellent outcomes, no side effects.

People here have lots of other tips for coping with CH (for example, know what your "triggers" are -- alcohol, chocolate, and heat being some typical ones).  Let us know what you're doing and how it's working and you'll get more advice. 

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Everyone...thank you for your support.

CH Father...I"m going to pring this out and try and see if I can some of these things locally.  Where I am I may have to go online and order.

My doc didn't give me anything for it today.  I think it was because he was laughing at me because I was excited it wasn't migraines! 

Right now I'm having 1 "attack" (my son said it sounds like a shark when I use that word) every other day between 6 and 7 at night...and it's nuts!  I'll be sitting on the couch watching TV or playing with the kid and then all of a sudden my head is about to explode!

Does the exercise thing really work?  I don't mind running...

Sorry...this has made me a bit spastic.  I'm not used to be sick...

Sorry, everyone...I know I'm rambling.  I'm just used to being the one in charge and taking care of everything and making it all better.

I'll contact the doc and see if I can't the O2 set up...

Thanks for everything...I almost think I feel better. 

Never knew something as simple as a "headache" could be this debilitating!  Although after reading what some folks are going through mine seems pretty mild...

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We talked about some things I have to change (bye-bye smoking).

There are some people here who say that stopping smoking made a big difference for them, and there many others who have quit and had no CH-related benefits from doing so.  I suppose stopping smoking is always a good thing, but I would not say that it has to be a top priority in the short run, especially if it adds to your stress/distress.  Much more important:  Get oxygen.  Try the energy drinks.  Start the D3 or licorice root.  Seriously consider busting.

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I'm already set up for a class and some meds to help with the anxiety/stress of quitting.

My doc is working on getting me the O2...and I'll pick up the vitamans this afternoon on my way home from work!

I'm not sure about the energy drinks, I really don't like the way they taste!...maybe some coffee :)  I'm in Italy and we have some GREAT coffee/expresso over here!

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Mysti,

You shouldn't have a problem getting the D3 ingredients locally, at a pharmacy or even a grocery store that sells vitamins.  Try to get calcium citrate if you can, but "regular" calcium (calcium carbonate) with magnesium and zinc is also fine (you just have to take it with food, whereas the citrate you can take without food).  Energy drinks like RedBull are sold everywhere: you want to be sure that what you get is high in caffeine and taurine.

In the file I linked to regarding oxygen, there are some articles from major medical journals that you can print out regarding oxygen.  Show them to your doctor.  You probably should try to find a headache specialist (not just a neurologist) for your next level of treatment.  If you're in the US, here's a list of doctors by state who have been recommended by people with CH: www.ouch-us.org/chgeneral/doctors.htm    (Curious thing: Your doc recognizing CH and then apparently giving you nothing for it except "lifestyle" advice.  Of course, s/he doesn't have the headaches, and has no real idea how terrible they are.  If you're not going to use busting, it seems to me you might as well get Imitrex (the injectable kind), which is very effective at stopping attacks but has unpleasant short- and long-term side effects, and causes rebound headaches, that busting doesn't have.  If D3 and O2 (oxygen) and other things don't fully work for you -- although they should and I think they will -- you'll have the Imitrex.  Hopefully (and very probably) you're episodic and not chronic, so you can get through this episode and then decide on a longer-term strategy.)

The exercise thing works for some people.  Very vigorous exercise right as an attack begins.  Others may have more to say about this.  But oxygen is better, and the energy drinks are likely to work.

You're not rambling--you're very clear.  And even if you were rambling, everyone here knows what it's like, the fear and panic and shock of having something like this happen to you.  It will get better.

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Sorry -- we keep overlapping.  Coffee might help.  Maybe you could also look for taurine capsules or powder to take with it -- though I'm not sure that will work fast enough.  In her early stages, my daughter just ate straight coffee beans, which seemed to help a little.

Lots of things can, and sometimes do, go wrong between the writing of a prescription for O2 and getting a proper set-up.  You have to have a high-flow regulator (at least up to 15lpm (liters per minute), a non-rebreather mask, and at least one large tank, if not more.  In that oxygen file there are some tips about what to do regarding the prescription and the delivery and set-up.  Keep us informed and we'll try to help you through the process.

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Sadly, I'm familiar with O2 set ups...my mom was on it for awhile so I know what to look for.

I printed up the files and also sent the links to my docs nurse (she's AWESOME!)  Right now they are suggesting I try tylenol or motrin to help ease the pain...I sent them some of the links from here...

She thinks they should be able to get the O2 set up for my tomorrow or early next week...and I know how to be a pain in the next with medical folks...my mom was terminal and they sometimes like to take the easy way out!

It looks like I'll have to try different combos to see whats going to work...and that's okay.  At least I'm moving forward!

@ Jeff...I'll try the energy drinks...maybe I can find one I can stomach.  If they had a green tea flavored one I might just be willing to give it a go!

Thanks so much for everything, guys!  I'm starting to relax a bit...it's not so scary now...

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Just throwing in my $0.02, since I also developed these things when I was 38, and spent an awful lot of time figuring out what they were and how to treat them:

Be cautious of what your doctor prescribes. I promise you, there is nothing he can do to cure your CH. Nothing. I wish I were lying, but I'm not. He may try verapimil, prednisone, yadda yadda yadda. They won't stop your CH, and the side effects could be devastating.

The O2 set-up you need is, unfortunately, different than what your mother had. You'll need an extremely high-flow set-up. And while I'm not an oxygen user myself, there is plenty of information here.

Consider the small energy "shots" as an abortive. Just make sure they contain at least 1000mg of taurine. They taste awful, but they're only 2oz. I feel that downing one right at the onset of symptoms really helps take the edge off.

Read, read, read. . .all of the information available here on various forms of busting. Everyone has different reactions to different treatments, so you'll have to experiment. In my case, a fairly high dose of RC (100 seeds) followed by a daily regimen of St. John's Wort has kept the beast away for over a month. You will need to find your happy place with this.

It might not be a bad idea to get rid of all triggers and get as healthy as possible, too. Not to be preachy, but you're fighting a strong enemy. Quitting smoking, eating right, exercising daily. . .all of these things will help you be stronger than the CH.

Best of luck!!

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