Hi all, I am new, just two weeks ago I started my first spell of Cluster Headaches in about 4 years . . . I was in denial until yesterday (trying sinus pills, taking a day off work to 'rest my eyes', using a new pillow at night) . . . but did some googling and came across the symptoms for CH that match perfectly (down to the drooping eyelid and tearing when I have a Bad  One).

Like I said I had the same thing about four years ago, for maybe 3-4 weeks, and had come to the same conclusion; but again, this time I chose to deny it for a while! (I can't imagine why!?  ::))

Last Saturday night was a biggie - crying, staggering around and telling my husband how much it hurt.  I had just started sipping a glass of Red Wine.  Yeah, that was a bad move.

Anyway I will admit I am posting here a bit reluctantly; it seems my attacks are far fewer than a lot of other people (every four years?), and I am somewhat paranoid that if I start reading too much about it/talking about it, I will somehow start having them more spells.

In other words, I am really hoping you nice people do not tell me "You can look forward to increasingly frequent, more painful CH spells in the future"!

I will say last night I subverted an attack my breathing deeply in my nose (filling my diaphragm) and out my mouth.  A little bit of tank-free O2 therapy if you will.  It worked like a charm.  Like I said - I am kinda worried though that this will cease to work based on what I am reading here.

By the way, I don't have insurance at the moment and have not been diagnosed except by myself and Google.  I am attempting to quit smoking, as of today.

On the bright side, when I first noticed one slightly droopy eyelid a month ago, I thought I was just getting old! Purely for vanity's sake I was a little relieved to read that that is a symptom of CH, so I hope it goes back to normal after this spell!  ;)

Anway hello to you all.

You can look forward to increasingly frequent, more painful CH spells in the future!

Sorry, you opened yourself up for that one. Truth be told, you could go chronic starting today, or you may have just experienced your last attack. Nobody knows, and there's no way to predict.

My suggestion - take it one day at a time. Get yourself a good neurologist/headache specialist, develop a good preventative med plan (verapamil, lithium, etc.), have good abortives available (O2, Imitrex, etc.), and keep living. Don't let it freak you out.

Y es, Insurance......
Look in the Medications/Therapies section; in top section, look for tips fo newcomers. Worth a scan.

Unfortunately, home remedies are seldom the real answer. Prescription meds are going to be the more effective route--but might try Melatonin, 9-11mg, night. A relative inexpensive OTC item at your drugstore. Few folks find it helpful.
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DON'T go to any neurologist; many have little training in this area.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


 

Thanks for the advice all.  I will definitely look into getting some Melatonin, not that I have yet had attacks wake me up at night.  Knock on wood.  I tend to have bad episodes just before bedtime though.


Quote:

You can look forward to increasingly frequent, more painful CH spells in the future! Sorry, you opened yourself up for that one.

Yep I did, no worries!  I am a massive worry wart, now that I have re-diagnosed myself all I can think about is my head, and wonder what is going on in there, and judge how bad the shadows are hour by hour . . . which is not really helping my mental state!

As I don't currently have health insurance, I will hold on finding a doctor for now . . . probably will try to get on some independent insurance plan first (will that make it a pre-existing condition? Darn it  :() But I am glad to hear there are preventatives that work for a good many people.  Except, Lithium . . . yikes that just always seemed like such an extreme drug . . .

Thanks again!

You should find a doc, if only to have him or her order an MRI of the noggin. To rule out anything more nefarious.

And as far as lithium goes, don't succumb to the TV mentality. As the preventatives go, it's one of the most tame (i.e., lowest number of side effects) I've ever taken. You just have to have your serum lithium level and kidney function monitored until you find the right level for you. Don't worry, your hand tremor is one of the first indications that you're taking too much.

One other thing about lithium. Theraputic levels for CH'ers is about half that of bipolar patients.

Good luck - and do try to find a doc. One that knows about CH.

Wonderland wrote on Aug 27^th, 2009 at 7:40pm:

............................  Except, Lithium . . . yikes that just always seemed like such an extreme drug . . .

Not nearly as extreme as my Clusters.

I suppose it's a matter of perspective.

Hi and welcome to the fold. I know that this thing is a true horror of a disease. It can go away though. Mine did in 1991 when I was 45. There is some evidence age being a good thing but 45 is very young.

Anyway, here is something I learned years ago and the price is right:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from my neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie      

Thanks again all who have posted since my last post . . . I am getting rather upset today about this.  I don't want a "condition" . . . my guilt complex is telling me this is punishment for being a smoker for the past 15 years  . . .

I was always a healthy person otherwise . . . never spent a moment in a hospital unless it was to visit someone else . . . my God if it turns chronic I just don't know how I will manage, except I do thank my lucky stars right now I don't have kids, I would not want to pass this down to anyone (I realize the genetic link may be up in the air, haven't researched it totally . . . )

Charlie - thank God for your post, it gave me hope.  I think I read about this technique elsewhere on this board yesterday . . . can't remember if you were the poster or if someone else was quoting you . . and I have actually in the past 48 hours tried to deal with oncoming attacks by concentrating on other parts of my body . . . will try your technique specifically next time (which may be now because I have a mid-level headache at the moment - shoud've gone to bed about 2 hours ago).

Thanks again.

Wonderland wrote on Aug 28^th, 2009 at 3:29am:

I don't want a "condition" . . . my guilt complex is telling me this is punishment for being a smoker for the past 15 years  . . .

Get over your bad self.   ;)  You're not being punished for being a smoker.  Some of us started with CH long before discovering the dubious delights of Lady Nicotine.


Wonderland wrote on Aug 28^th, 2009 at 3:29am:

my God if it turns chronic I just don't know how I will manage,

If it happens, you'll manage--because you must.  Consider this, however:  Chances are, you'll never go chronic.  Most of us (around 90 percent) are episodics, and remain so.  So relax.  You probably won't go chronic--but if you do, you'll handle it.  Lots of people do. 

I know you don't want a "condition", but it's sorta like an unplanned pregnancy, or a meteorite that punches a hole in your roof--it just is.  Doesn't matter if you want it or not.  Here it is.     ;)

Guess what I'm saying is that--come what may--it'll be fine.  You can do this.  It's just part of the package.

Best wishes,

George

Some chronics say they actually prefer being chronic because it's more predictable. I've had two 18-month periods of chronicity.

Me? I prefer being pain free, and whether that's because I'm between cycles or through the judicious use of preventative and abortive medications, I don't really care. Pain free is the goal.

Keep in mind that we are all imperfect human beings. Some get cancer, some get CH, some smell like a locker room, and some are a-holes. Welcome to the world of imperfection. We all have our crosses to bear. You'll be fine - this one doesn't kill you.

Brew's last line is the most important...this stuff hurts, but it won't kill you! 31 years of episodic here, managed a law enforcement career and raising 2 beautiful girls to adult hood...well my wife helped a litltle bit with that!!!! ;) You'll be fine.

Joe

Wonderland, as far as insurance goes, you won't have a pre-existing condition if you have not been treated for it. If you can get some insurance, then get in to see a good headache specialist, and get treated.

In the meantime, hang in there. And don't worry, you probably won't become chronic. Just take it one day at a time. And read, read, read. There is a wealth of information on this site about dealing with CH. And if you have any questions, please ask.

Welcome to the board!

Eh, going chronic isn't as big of a deal as it seems at first.

My cycle has been ongoing since May 28th of 08. When I went chronic my response was kinda "Who gives a fuck? It's just another condition I have that has to be maintained." Mind you at the start of my cycle the idea terrified me.

I've had a chronic illness go into 3 years of remission, and when it came back, I was pretty much screwed over badly. So I can see how some chronics would rather remain that way due to it being predictable... It can't screw your life up if you're accustomed to it.

I personally don't care either way. My body doesn't care if I'd rather be episodic or chronic, and is gonna do what it wants in the end...

You learn to cope with it, being episodic, or chronic.

You may want to look up a thread titled Synergy, it's an herbal mix that some sufferers have recieved relief from. (Melatonin is included in this.)

Hope your cycle ends soon.
PFDAN
Mystina