Greetings:

I need to think.  I need to talk.  My cycle began in late September.  Last year, it ended in mid May... still it lingers.  I'm in a position now, where I could see a neurologist but I RESIST!  I researched the many possible medications prescribed for cluster headaches and I don't believe I could tolerate the side effects.  I need to be on my game because I am taking care of my husband who is in the late stages of emphysema.  I can't afford to be sleepy, off balance, sick to my stomach or not able to think straight. I need to pay the bills and do the driving, cooking, dishes, housework and deal with doctors and medications.   :'(

For myself: I did order the oxygen mask (from this site) and my 15 lpm regulator is on its way.  My docs in AZ (pain specialists) used radio waves on every nerve connected to my head and face except the occipital (ran out of time) nerve in the back of my head.  I believed the pain clinic stopped the headaches last spring but now I see it was simply the end of my cycle.   I mistakenly gave THEM all the credit.

I just want this to END.  Eight months without sleep and nightly visits by this soul sucking VAMPIRE has me exhausted and depressed.  (As you know it can)

I have to say, typing this has made me feel a little better.  Maybe (if I'm VERY lucky) I could find a neurologist that would work with me on the meds.  I'm so ready to just give up... but maybe I could soldier on if I could find a doctor that knows about this "syndrome"   

Thanks for listening...  we all know how awful this is.  We all understand that not having answers is frustrating.  Because you all find a way to cope ... gives me hope that maybe I can too.

Be well everyone
Linda AKA Granny Arizona

It's critical for your peace of mind to understand that Federal law requires the listing of side effects. What is almost NEVER expressed here in our messages is the actual rate of occurrence. If you get to the library or drug store and read the PDR (Physicians' Desk Reference) you will see the rate is 1/2% or less and upward.

Rates are POSSIBILITIES, NOT PREDICTIONS. It's a mistake to take every listed side effect as a statement that this WILL occur for you.

Individual biology and our personal medical history is so complex that it's extremely difficult to predict what, if any, reaction you may have to any particular drug or combination of meds that you may be taking. Your single, best protection is to get from your doc/pharmacist, a list of the possibilities and then monitor yourself. Few side effects are life threatening at such speed that you can't respond to signs. Know the signs of a developing issue allows you to contact you doc for advice.

I'm troubled by the number of folks who post comments about side effects, written in such a style that it conveys that this or that side effect is always associated with XX drug. These statement are a disservice to people who have no background in medicine, to new-comers who need information and not fear.

Another self-protection: never accept such a statement which is not given along with some information about degree/frequency of occurrence. Appreciate that we are not medical profs. and confirm what you read here before taking action upon our messages.
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A message I posted about this same issue re. dogs. The message is the same......

I posted this message on a chat group for dog owners (Vizsla). The issues are the same whether we are talking about animals or humans--so a little translating of words will make it understandable. The core idea: side effects are not an absolute--yes/no--issue. We must always balance potential risk with potential benefit. I'm concerned with the tendency to present comments about medicine side effects in terms which frighten folks away from trying meds which might be of benefit.
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This question about side effects from food (allergies) or medications pops up regularly. The problem is, we don't ask the correct questions. The issues are:

1. What is the rate or chance or probability that any particular side effect will develop?

Without information it's easy to assume that the list of side effects is a statement of what will happen if the med is used. In fact, side effects are reported in human medicine/vet literature as a rate of occurrence ranging from less than one percent and ranging upward.

It's important to ask the Vet for two pieces of information: what are the side effects?; what is the rate or chance that a particular effect will occur? Without information it's impossible to make a good judgment about using or not.

2. How serious are the side effects compared to the condition for which the med is being used?

We have a member whose Vizsla would have died from a systemic fungal infection without a med. The problem is that this med has serious and frequent side effects--but there were no treatment options.

3. How important is my judgment about the risk of side effects vs. the benefit of using this med?

This is a wholly subjective judgment which no one can make for us. We make a decision about how much risk tolerance we have; what are we willing to bear.

Bottom line: A list of side effects is a statement of POSSIBILITIES. It is not a PREDICTION of what will occur. Wisdom calls for knowing both the risk and asking the vet what to look for, i.e., symptoms of side effects. 
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Re. pain clinics. Our bias is "agin 'em" because, it appears from our collective experience, that folks in this area don't have any really effective training in headache. (The medical literature is shocking re. actual education docs get, even neurologists, in headache.)

So, if at all possible, we urge a headache specialist.

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. 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Bob makes an excellent point. I coud have had my CH under control many years earlier then I did. My doctor suggested Lithium as a prevent, I wasa  cop, and associated people on lithium wih the mouth breathing zombies from "One Flew Over The Cuckoos Nest." So for several years I bore my attacks using only lidocaine drops and oral cafergot, it sucked. This was in the early 80's before 02 and Imitrex were making their splash.

I finally caved in and agreed to try lithium. At 900 mg a day, it blocked 70-80% of my attacks while I was on cycle. The horrible side effects? I peed a lot the first 2 weeks while my body adjusted to the salt intake. The slight lethargy it caused was more then offset by a single cup of coffee. It allowed me to complete a 30 year law enforcement career retiring as a patrol sergeant.......a long way from that mouth breathing zombie I envisioned! ;D

There are so many effective treatments out there, until you try them you'll have no idea IF you'll suffer any side efefcts at all. Good luck in your trials.

Joe

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

Each time you dose you may want to have someone around to care for your husband for about 2-3 hours or so cuz it can get a little bit weird.

I was episodic for about 12 or 13 years, then became chronic the last 6 or 7 years. I was mostly on a regimen of verapamil and lithium with O2 and Imitrex to abort attacks. During the worst of it, I would STILL awaken multiple times per night and dash for the O2. The side effects were becoming a real pain in the ass for me. I was sick and tired of feeling inhuman.

Once I embarked on a clusterbuster regimen that lasted about 4 months (every 5-7 days at first), my hits reduced greatly in intensity and frequency. Now I take a smaller maintenance dose once every six months or so, whether I feel like I need it or not.

The only CH pain I experience now is at the shadow level - not enough to stop me from being human again and enjoying the life that God gave me to the fullest extent possible. Any "pain" I feel is more like a twinge, and easily dispatched with an energy drink like Red Bull, Monster, or NOS and the occasional 200-400mg of ibuprofen.

Thanks to all of your for your response.  Just like me.. borrowing trouble from all of the possibilities in tomorrow when I have enough to deal with the reality of today.  So... I have decided to suck up... take my pain diary to my doctor and co-operate with whatever she thinks I should start with.  Hopefully, after I expain my situation, the Doc can keep my meds light as I adjust.  i found a neurologist who advertises herself as a headache specialist.  I need a referral from my primary care doctor.  So Monday, I'll be on the phone making appointments.

I tried Topamax and I need to rule that out ... but maybe Verapamil, ibuprophan and oxygen will help me. I would consider Lithium too.  I have a friend with ALS and he uses it with great results.

I was pretty low this morning when I posted.  So thanks everyone for responding.  I always feel better once the last night attack fades and I get up to start the day.  My attacks always hit at night except for occasional shadows during the day. 

I want to get these hits put into remission.  I'm concerned they may become chronic.  The rare days I wake up pain free, and hope it's the end of the cycle only to be disappointed. 

Catch ya later  :-*

I totally agree with what the other people have been saying.

If a car came with a list of side effects (i.e. all the possible injuries that you could get in a crash) it would look horrible, but yet we all know that the risk is relatively low. Few of us would never get in a car for that reason.

It's the same with CH, I use verapamil as a preventive, currently 240mg to keep away shadows, but 480mg a day whilst I was actively getting CHs. There is no way I'd even remotely consider skipping the verapamil to increase the number of CHs I got.

You have received some very sound advice.  Keep talking to us.  It's good to just get it out.  Ask questions....voice your thoughts and concerns.  These folks are great and super support.

That's all I have except to say...my heart goes out to you.

Hi Linda.  Great name btw... ;)

Since you have to be on top of everything with your husband and such, I wouldn't recommend Topomax.  Around here we call it DOPY-MAX.  It will make you forgetful, lethargic and when I was on it I couldn't concentrate at all.  Some say they weren't able to add a simple column of figures.

I'm VERY happy to hear you are getting the mask and regulator.  You are going to find that most likely you'll be able to abort in 10 mins or less with it..


Quote:

I'm in a position now, where I could see a neurologist but I RESIST!

Please don't.  Why suffer longer than you have to?  If there is a HA specialist that you can see, do it!   Verapamil and Lithium are excellent preventatives with a very good success rate and besides 02...if you can get some Imitrex injections or nasel sprays for the times when you are in public or can't get to the 02...try to get your Dr. prescribe it. 

This site isn't just a site for information, it is here for support so you just keep on talking and we'll keep on listening.   Your plate is pretty full right now Linda.  Let us all help you through this, O.K.?

Linda

Quote:

This site isn't just a site for information, it is here for support so you just keep on talking and we'll keep on listening.   Your plate is pretty full right now Linda.

Linda makes a great point. Too often we get caught up in the mechanics of prescriptive treatment and forget there is a person in real pain and isolation writing to us. We are here for support, which includes, but is not limited to, sharing interventions which have worked for us. My concern is this: you have recently moved to your current location, yes? If so, and given the full plate you do have, do you have a support network of family and friends who can come alongside as you deal with the realities of your health and your husband's condition?  Please do not try to be the only rock in a sea of troubles here. Yes, we can help, but boots on the ground beats long-distance niceties every time. Blessings. lance

Hi Linda

In my job I often ask “who cares for the carers”
An amazing group of selfless people who care for loved ones 24/7 without question, never grumble and just “gets on with things”.
Often their own needs get pushed to the bottom of the list of priorities, but to deal with CH as well…I don’t know how you are managing.

This site is full of information that will assist you in making an informed decision regarding your treatment pathway, a decision that has to be right for you.
Ask questions and raise your concerns in a forum that is able to offer support, kindness and an answer to most if not all things CH (and not CH)!

I am by no means an expert in CH, I just take my meds and ride the storm as and when “he” decides to visit. I often want to stop the meds (typical nurse!) but had a kick up the a**e this weekend as I had a really rough time…. Reaching for the pliers to remove my teeth and given half a chance my eye as well, could not get rid of the pain, the only thing that I did differently this week is I missed a dose of verapamil… I’m positive that is the reason I got hit.

There are documented side effects as with all meds, learning to manage them is half the battle and makes living with them easier, I know I could curl up and sleep mid afternoon…but a STRONG coffee or red bull perks me up…sometimes a little too much in the eyes of my work mates!! I do tend to live life at 100 miles an hour! But add caffeine and we have total chaos!!
FOR ME (totally my opinion) the side effects pale into insignificance in comparison to the disruption and pain my CH gives me.
I hope you stick around
Take care
Sue x

Glad to see that you're intent now on driving a stake through this soul sucking vampire's heart, and good that you've found an actual headache specialist and are getting set up with O2.

Also, although the clusterbusters approach isn't necessarily feasible for everyone, I think it could be worthwhile to take careful notice of the results Brew reported he's had above as they are not unusual, and for a chronic like him to only have to experience 2-3 hours of strong 'side effects' with his one maintenance dose every 6 months, well that's just astounding. Here's a Newseek article on clusterbusters if you haven't seen it yet: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And have you seen the topic here regarding the high dose vitamin D3 regimen as a preventative? START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There are SO many ways to find significant relief now - I'm betting you'll settle on some really good ones.  :)

I just read a couple of your new posts and feel I must thank ALL of you again for your care and understanding.  I will be researching the articles you sent too.  I had another really bad hit last night.  I looked in the mirror and didn't recognize the face looking back at me.  One eye half shut and the right side of my face was swollen to the point of looking warped.  But I felt a lot worse than I looked.  When I get bad hits like that it seems I have a lingering K3/4 all day.  I'm wondering if any others might have that result also. 

I can't tell you all how much the support means to me.  I did start on lithium orotate about a week ago and using my oxygen as you all suggest.  My husband is very understanding of the struggle I'm having but I don't like to trouble him too much because he feels so bad about not being able to help me more.  I don't want to lose him - he is my best friend - so I do my best to be sure he has what he needs too.

My family (three grown sons) and my mother (age 90) have no real idea what CH is.  They sort of treat me like I have migraine..."I didn't want to call you because I thought you would be in bed."  "You just rest, take care of yourself and can't the docs give you something for pain?" 

It is a sweetness beyond words just to have someone really know the extent of this struggle.

I guess you have to be one to know one ... I want to stay around and maybe help other new people the way you have all helped me.

God bless you all!
Linda

Quote:

it seems I have a lingering K3/4 all day.

We call that a shadow and yes, we all experience them.  They're not enough to make you tear your hair out in agony...but they sure can be irritating.   Try an energy drink like Red Bull or Rock Star for the shadows.  The caffeine and Taurine in them have helped many.


Quote:

I want to stay around and maybe help other new people the way you have all helped me.

That is very admirable Linda and I certainly hope you DO stick around...but for right now you've got too much going on and it's time to let us help you.  You need to get on a good treatment program so you can handle the "other" things going on in your life.  There's plenty of time for you to give back.   Let us do whatever we can do to help you for now.   ;)

Go placidly amid the noise and haste, and remember what peace there may be in PFDs.

As far as possible, without surrender, be on good terms with those that offer advice. Speak your truth quietly and clearly before strangling those who'd offer goji berries at a price. Tread softly upon the genitals of capsaicin purveyors and torture only slowly the trolls who'd offer us a cure.

Listen to others, even the dull and ignorant, for they too have their stories of unimaginable migraines and tooth-ache. Avoid loud and aggressive persons, they are vexations to the spirit and a mere Kip-5 would kill 'em.

Exercise caution with the medical profession, for the world is full of trickery, but let this not blind you to the virtue there is in O2 and a good neuro. Many persons strive for high ideals but there's only one Deej. Especially, do not feign affection, for we love you as you are: CH and all.

Take kindly to the counsel of the oldsters, gracefully surrendering the years of mis-diagnosis. Nurture strength in spirit to shield you in sudden Kip-10. But do not distress yourself with imaginings as many fears are born of fatigue and loneliness. Thank you ch.com.

Beyond a wholesome discipline, be gentle with yourself and your supporters, especially when head-banging is all, for you are a child of the universe. No less than the trees and the stars, you have a right to demand imitrex, 25lpm and verapamil, or seek out clusterbusters should it be your desire. Frozen peas are our friends.

Therefore be at peace with your beast, whatever you conceive him to be, and whatever your labors and aspirations. In the noisy confusion of life, keep peace with your soul and ensure your arsenal is full.

With all its sham, drudgery and broken dreams, it is still a wonderful world.

Be cheerful. Strive to be happy. PF times for all.

Brian...I am speechless!!!!!!   That was beautiful.

Damnit Brian. With permission  that will be printed out, framed at my house, and passed out at the OUCH convention. Just wow. :o

Joe....( who was always a big fan of desiderata)

Wit...wisdom...WOW!

Stunningly creative and affecting Brian...I have never been proud to be a clusterhead...but I AM proud to reside in clusterville, with such as you, and THIS.....

[smiley=bow.gif] [smiley=bow.gif] [smiley=bow.gif]

Best,

Jon

I have to register my appreciation along with the others here.  Your writing could well be posted as an article on this site... very well said.  Thanks Aussie!