Given everything I have read I am 90% sure that I am experiencing are cluster headaches but the doctors are useless at this point.  For nearly 3 weeks I have had a dull headache that comes and goes, with it I get these fierce, sharp, terrifying, stabbing pains on the left back side of my head, when the pain hits my face go bright red and hot and once the pain settles down so does the red face.  After 4 days I went to the hospital.  They did a CT and said it was a sinus infection (I have not had any sinus trouble what so ever in months, not even a cold) and they gave me antibiotics and sent me home.  The medication ran out, the pains stayed and I went back to the hospital 3 more times (they were there afraid I had meningitis, which I don't) and are now calling it "chronic pain".  Pain medications do not work on this pain and its now also effecting my neck which seems to get sore and stiff with the pains.  Not knowing what to do I started researching and cluster headaches seem to fit.  This is not something I have experienced before.  What does anyone here think, might I be in the right place or on the right path?  I do have a doctors appointment but its over a month from now....

Welcome to the Forum, Shadows. First, please remember we are not doctors, we just have a lot of experience with CHs and the tragedy they bring. Second, because we have a lot of experience, and we share that pretty freely, we have come to realize this is more of a "complex" than it is a singular phenomenon. By that I mean, while we share some commonalities, we have come to conclude: "we all are different." It does not seem as if you are presenting along the "typical" lines of a CH. But, having said that, remember my caveat: we are all different. It is very frustrating in the beginning as we try to get the medical community to settle in on a diagnosis, particularly when CHs are determined more by symptom and by ruling out other causes than by a test. Head pain is varied and so are its causes. I guess I would first steer you toward a true Headache Specialist who will have more than a passing and textbook acquiantence with CHs and other diseases of the head. Such a one will be more diligent in helping you find relief. I do know what you are describing, however, as a form of what we call shadows. It is annoying and painful and cumulative. If they are true shadows then the best advice is to deal with them as you would a full on hit. But I am afraid you are some distance away from that. Persist in your own best interest. We will assist as best we can. I will pray for your relief and speedy diagnosis. God bless. lance

Welcome to the board Shadows, what Lance said! There are hundreds of headache types. Doctors get about 4 hours TOTAL education in doctor school, on all headache types. Your typical garden variety neuro does not get much more. So if you have a typical migrain, tension, or sinus infection headache, no problem they know just how to deal with it. Anything more complicated then that and you're asking the pump jockey at your local service station to rebuild your transmission......your chances of success are pretty slim. ;)

You need to locate a headache specialist neurologist. This gives you the best shot at an accurate diagnosis, and an effective treatment regimen. If you're not already keeping a headache diary, start one now. The more detailed it is the better, the diagnosis for many headaches is in the little details.

Wishing you speed and luck on the diagnosis, and some pain free time soon.

Joe

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
=========================

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.

Lance-

Shadows....I read that some place else too but didn't fully understand it and wasn't sure it was a real thing.  Of course until all of this started I didn't really think that a headache that was not the result of some sort of head trauma could ever be so painful or last so long or have these insane spikes of pain.  I will have to read more about shadows (funny since my nic-name is Shadows).  I do have an appointment to see a specialist but its not until the end of February, in the mean time I am going nuts with this.  I actually thought that maybe it had stopped earlier today but I was wrong.... :-[


wimsey1 wrote on Jan 4^th, 2012 at 8:21am:

Welcome to the Forum, Shadows. First, please remember we are not doctors, we just have a lot of experience with CHs and the tragedy they bring. Second, because we have a lot of experience, and we share that pretty freely, we have come to realize this is more of a "complex" than it is a singular phenomenon. By that I mean, while we share some commonalities, we have come to conclude: "we all are different." It does not seem as if you are presenting along the "typical" lines of a CH. But, having said that, remember my caveat: we are all different. It is very frustrating in the beginning as we try to get the medical community to settle in on a diagnosis, particularly when CHs are determined more by symptom and by ruling out other causes than by a test. Head pain is varied and so are its causes. I guess I would first steer you toward a true Headache Specialist who will have more than a passing and textbook acquiantence with CHs and other diseases of the head. Such a one will be more diligent in helping you find relief. I do know what you are describing, however, as a form of what we call shadows. It is annoying and painful and cumulative. If they are true shadows then the best advice is to deal with them as you would a full on hit. But I am afraid you are some distance away from that. Persist in your own best interest. We will assist as best we can. I will pray for your relief and speedy diagnosis. God bless. lance

Joe-

I actually did start writing things down after the 5th day and there seems to be a pattern to it, which I think is so very strange.  Having pain like this just doesn't make sense and is so frustrating to me right now.  I am seeing a doctor but my appointment isn't for a long while off.  Right now I am really sick of emergency room doctors (since that's where my regular doctors office keeps sending me), all they do is pump me full of narcotics that don't help the pain at all, well the valume seemed to help a bit but I think I was to drugged up to really know for sure by that time and I don't want to go back in.  I almost ended up going in last night at the request of my husband who was sick of seeing me go through pain spikes that are ugly.


Guiseppi wrote on Jan 4^th, 2012 at 9:06am:

Welcome to the board Shadows, what Lance said! There are hundreds of headache types. Doctors get about 4 hours TOTAL education in doctor school, on all headache types. Your typical garden variety neuro does not get much more. So if you have a typical migrain, tension, or sinus infection headache, no problem they know just how to deal with it. Anything more complicated then that and you're asking the pump jockey at your local service station to rebuild your transmission......your chances of success are pretty slim. ;) You need to locate a headache specialist neurologist. This gives you the best shot at an accurate diagnosis, and an effective treatment regimen. If you're not already keeping a headache diary, start one now. The more detailed it is the better, the diagnosis for many headaches is in the little details. Wishing you speed and luck on the diagnosis, and some pain free time soon. Joe

Bob-

I am not 100% sure what your asking me to do.... 

I am located in Puyallup WA, I have no history of any headache that didn't either go away on its own with in an hour or so or with a Tylenol or something similar, I am healthy, and this all started completely out of no where.  I do have a regular doctor already and have an appointment with a specialist near the end of February.



Bob Johnson wrote on Jan 4^th, 2012 at 9:23am:

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you. Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you You can add your location by editing your profile. CP Member --> profile BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow. ========================= 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.

Hi shadows1177,
The OUCH website has a list of recommended doctors from CH sufferers who found these doctors to be of help. 

I looked up Puyallup, WA and found you are close to Seattle.  Below are two recommended doctors from the OUCH website that are in Seattle.  Unless one of these two are who you have an appointment with next month; you may consider calling to inquire if they can meet with you sooner.

Washington
Seattle:
1. Dr. Sheena K. Aurora Swedish Headache Center

2. Dr. Sylvia Lucas Neurology Headache and Multiple Sclerosis Clinic at UWMC␣

You may also consider taking the "Cluster Quiz" to help identify your head pain.  See yellow tab, left side of screen.

Hang in there! ;)
-Gregg in Las Vegas

I checked the OUCH site yesterday and sadly I am not seeing one of those doctors (Seattle isn't really close either, but its the closest big big city) and my regular doc has to refer me to a specialist or my insurance wont cover it but it is possible that they may refer me to Seattle.  They have no openings for a new patient until my appointment and flat out told me that if the pain level goes above a 7 that I should go to the nearest emergency room (where I have been 4 times) and that would result in me going there every single day.

I tried to take the cluster quiz but there were questions that I couldnt answer because this is new and has never really stopped since it started, well maybe for an hour or so has it stopped but then it starts up again....

Thanks for reading and helping.   :)

**update, I was thinking of a different cluster quiz I had tried to take someplace else.  Just did this quiz and answered all but two of the "cluster" questions with a yes**



LasVegas wrote on Jan 4^th, 2012 at 6:58pm:

Hi shadows1177, The OUCH website has a list of recommended doctors from CH sufferers who found these doctors to be of help.  I looked up Puyallup, WA and found you are close to Seattle.  Below are two recommended doctors from the OUCH website that are in Seattle.  Unless one of these two are who you have an appointment with next month; you may consider calling to inquire if they can meet with you sooner. Washington Seattle: 1. Dr. Sheena K. Aurora Swedish Headache Center 2. Dr. Sylvia Lucas Neurology Headache and Multiple Sclerosis Clinic at UWMC␣ You may also consider taking the "Cluster Quiz" to help identify your head pain.  See yellow tab, left side of screen. Hang in there! ;) -Gregg in Las Vegas

Mapquest LOOKED as if the two cities were close, lol.

Check and see if one of these doctors are on your specialists list of providers covered by insurance; you might consider scheduling an appt anyway.  Couldn't be anymore expensive than your ER visits which could easily bankrupt a millionaire.

Some things that come to mind that may help you whether it is CH's (Cluster Headaches) or another headache disorder include:

Melatonin before bedtime, at onset of attack slamming a Redbull or other energy drink of choice containing Taurine/Caffeine, the anti-inflammatory regimen noted on the thread titled "123 days PF and I think I know why" found at the Medications/Treatment board, frozen peas/icepack applied to eye/temples/neck, hot/cold shower-to each his/her own, face in front of car A/C on full blast, if you have snow-go outside and use snow/ice applied to head pain areas, oxygen therapy-welders o2 no script required, etc.

Wishing you PFDAN (Pain Free Days And Nights) ;)

-Gregg in Las Vegas

LOL, maps can be deceiving. 

Actually my ER visits are fully covered as long as I have called my regular doctors office first and have been told to go in (go figure) and my regular doctor appointments are 75% covered.  I believe that one of those docs are part of my plan but I have to be referred from another doc, which is the issue.  Blah.

When the pain is stabbing I have noticed that I crave warm (not hot or cold) coffee, black, and that does seem to help a bit.  I dont normally do energy drinks but I will try some tomorrow!!



LasVegas wrote on Jan 4^th, 2012 at 7:35pm:

Mapquest LOOKED as if the two cities were close, lol. Check and see if one of these doctors are on your specialists list of providers covered by insurance; you might consider scheduling an appt anyway.  Couldn't be anymore expensive than your ER visits which could easily bankrupt a millionaire. Some things that come to mind that may help you whether it is CH's (Cluster Headaches) or another headache disorder include: Melatonin before bedtime, at onset of attack slamming a Redbull or other energy drink of choice containing Taurine/Caffeine, the anti-inflammatory regimen noted on the thread titled "123 days PF and I think I know why" found at the Medications/Treatment board, frozen peas/icepack applied to eye/temples/neck, hot/cold shower-to each his/her own, face in front of car A/C on full blast, if you have snow-go outside and use snow/ice applied to head pain areas, oxygen therapy-welders o2 no script required, etc. Wishing you PFDAN (Pain Free Days And Nights) ;) -Gregg in Las Vegas

Greetings Shadows,

Welcome and so sorry you had to join us.

I just met this beast they call Cluster Headaches recently. What I offer is from personal experience.

1) "What you can measure you can manage" - As already mentioned keep a log, diary, journal or whatever you want to call it. The website is chock full of valuable information but what you write down you may find to be priceless.

2.) "Walk it off" - Before I was diagnosed or found this website this was the only thing that brought me any relief. For me about three fourths of the way around my block my attack would start to subside. While walking I tried varied breathing patterns shallow, deep, fast, slow. It wasn't always easy, there were some nights I walked my block every hour on the hour. This also kept me away from the walls that I have heard others have banged their head on.

3.) Energy Drinks - I had never touched one either until it was recommended on this site. Look for 1000mg taurine and caffeine.

4.) I also had to educate my primary physician about Cluster Headaches and different tharapies in order to get meds to carry me through to the neuroligist. If my doctor only offered me the ER until I could see the specialist I would be seeing another doctor.

I am hoping you find some relief soon and please keep us posted.

Blessings to us all,

d

As always Thank You, Thank You, Thank You for those that came before us.

shadows1177,
Is the specialist you have an appt with the end of Feb, a headache specialist/neurologist?

A headache specialist/neurologist is the best specialist to visit regarding CH's, but often an internist or PCP (Primary Care Physician) should be able to prescribe you something to tide you over until your appt the end of Feb.

I wouldn't accept the end of Feb as your only option, unless you enjoy the pain.  That was sarcasm, but I am serious too.

Your regular doctor should be able to prescribe Prednisone, Verapamil and Imitrex injections, along with o2.

The only thing you have to lose is your sanity, patience, relationships, marriage, kids?, job?, etc.  I, like many, have lost many of these life attributes due to waiting too long, misdiagnosed, trial/error of meds, ignorant doctors, etc.

You truly need to be a self advocate and fight for yourself.  Take a look at that cluster quiz again.  You really should be able to answer all of the questions, regardless of how new you are to this pain.  Share your answers here with us.  What questions were you not able to answer?

"Knowledge is power" and this website will educate you to educate others.

Plenty of credible info to print and share with regular doctors, neurologists, employers, ER rooms, insurance co's, etc.

If you wait, odds are against you and most likely your condition will worsen.

If you have CH's, you really need a (1) transitional meds (such as Prednisone), to be started at the same time as you start (2) a preventive med (such as Verapamil) and you will need abortive treatment to control the pain when you get attacked (such as high flow oxygen and Imitrex injections).

You need to arm yourself with knowledge so that you can be your own doctor so to say and tell the doctor...no to tylenol...no to pain pills...no to ineffective dosages of known CH meds that work, etc.  Don't settle for anything less than satisfaction.  You have medical insurance, call around nearby cities if you have to travel to get to somebody competent.

i.e. I drove 5 hours each way to Mexico just to get Imitrex as I had no insurance and couldn't tolerate the pain.

Unless you do something proactive, you are just setting yourself up for punishment that can be avoided and will only have yourself to blame if you don't take the bull by the balls and run.

Blunt, but truthful.

You mentioned your pain is left sided.  Is it always on the left or sometimes on the right or entire head?

Do you feel most pain in/on/and behind your left eye?

Do you feel pain in your left side forehead temple?

Does your left nostril get congested or run?

How long does your pain last?

Have you noticed excruciating pain that wakens you from sleep?

Does your pain (attacks) occur at the exact same time everyday and every night?

These are some of the many CH symptoms/things to share with ANY doctor you hopefully get to ASAP.

Can you lie down when you feel the pain and try to sleep it off or is too unbearable and must pain, scream and cry?

Please do yourself a favor and read, ask questions and vent.  Why do I bother writing you all this?  Because I care about strangers who also are feeling TORTURE by the DRAGON.  I've suffered 32 yrs and have been taken advantage of by doctors, misdiagnosed, guinea pig to meds that were harmful instead of helpful, etc far too long until I educated myself through the help of this website and learned to be a self advocate among an ignorant medical community.

Don't be a stranger! ;)
-Gregg in Las Vegas

Hiya shadows,

There are two docs in this area I would recommend...the already cited Sheena Aurora (Swedish) and her former partner...Elena Robinson.
Address & Contact Information:
Southwest Medical Group NEU Ass
505 North East 87th Avenue Suite 460
Vancouver, WA 98664

Were I you...I'd go see one one of 'em. Dr Aurora has been my treating neuro for 10 yrs....she...to quote: "treats this condition agggressively"..Dr Robinson wrote a letter for me to the insurance company that got me the meds I needed....

Swedish Headache and Pain Center...does get ch...unlike most. Dr Aurora told me...early on...when you NEED to get in....if you can't...call ME. (it was never necessary, I always get in...when I need to). TELL them CH!

She's all alone now..it may take a while...it is worth it....

Best,

Jon

Hey Shadows,

Welcome aboard.  You've come to the right place...  Lots of long time CH'ers and gurus around here and well over a thousand years of collective experience in controlling cluster headaches effectively.

I live near Bremerton, WA, so you're only a hop-skip-and a jump away...  Perchance we can meet half-way at Anthony's in Gig Harbor to see what we can work out for you.

Check your PM InBox for more details...  It's clear you're having a rough time and it doesn't need to be that way.

Take care,

V/R, Batch

I haven't tried walking during one of the pain spikes that I have been getting, although banging my head on something actually sounds good when I get those.  I am not even sure that I can walk during one of those moments, but I will try anything at this point!  I started writing down the times, intensity and what was going on around me/what was I doing after 5 days of this because I was looking for a pattern, trying to see if there was something triggering it.  There is a pattern but its more of a time and pain level than anything else, which is not what I hoped to see.  I was hoping that maybe it was something in my environment that I could just get rid of or avoid and its not.  :(  On my way to work this morning I am going to look for energy drinks at a near by store and pick up a couple to test out, if it helps I will be doing back flips in joy!  My doctor sucks, doesn't want to deal with this at all, and at first thought I was just seeking pain meds.  Then they watched me go through a pain spike and sent me to the emergency room (again) because they thought I was having an aneurism or meningitis or something.  Now knowing that its not (via CT) they referred me to the neurologist and wont see me further for it and to get a new doc through my insurance company is a serious issue that I have been asking for.



norkAch wrote on Jan 4^th, 2012 at 8:59pm:

Greetings Shadows, Welcome and so sorry you had to join us. I just met this beast they call Cluster Headaches recently. What I offer is from personal experience. 1) "What you can measure you can manage" - As already mentioned keep a log, diary, journal or whatever you want to call it. The website is chock full of valuable information but what you write down you may find to be priceless. 2.) "Walk it off" - Before I was diagnosed or found this website this was the only thing that brought me any relief. For me about three fourths of the way around my block my attack would start to subside. While walking I tried varied breathing patterns shallow, deep, fast, slow. It wasn't always easy, there were some nights I walked my block every hour on the hour. This also kept me away from the walls that I have heard others have banged their head on. 3.) Energy Drinks - I had never touched one either until it was recommended on this site. Look for 1000mg taurine and caffeine. 4.) I also had to educate my primary physician about Cluster Headaches and different tharapies in order to get meds to carry me through to the neuroligist. If my doctor only offered me the ER until I could see the specialist I would be seeing another doctor. I am hoping you find some relief soon and please keep us posted. Blessings to us all, d As always Thank You, Thank You, Thank You for those that came before us.

Blunt but your truthful and helpful to me, so thank you.  Its just a neurologist that I am seeing and then I will likely get referred again to a headache specialist (per their nurse).  My reg doc and the one that I have been referred to are real pains in the rear and really don't seem to care at all.  I did retake the quiz and answered all but 2 of the "cluster" questions with yes...  My being here is part of me researching, looking into what I experience and what others experience as well.  I am seeing my regular doctor again tomorrow and plan to talk to them about some of the medications that I have seen here.  What still leaves me lost is why pain meds don't work, the pain is still there, I hate it.

Do you feel most pain in/on/and behind your left eye?  Its like a pain shooting from behind my left eye through the back of my head, my eye twitches sometimes when I am in pain too.

Do you feel pain in your left side forehead temple?  Its not in the forehead, behind it though.

Does your left nostril get congested or run?  Yes, and to top that off, runny nose on the left side only, twitching left eye, go to sleep and wake up nearly screaming in pain 2.5 hours later.

How long does your pain last?  The dull pain that I have has been there since 12/18 and I have only had an hour here and there with it gone, the sharp pains have been as short as 3 minutes and some have lasted for 10 minutes, my most unfavorite is near my mid work day where I have these sharp 3 minute pain pains come and go for 2-3 hours.

Have you noticed excruciating pain that wakens you from sleep?  It wakes up nearly ever every night, some times its a pain that makes you want to scream but cant because your in too much pain.  I do a lot of moaning and rocking...

Does your pain (attacks) occur at the exact same time everyday and every night?  Not exact but pretty close (with in 10-15 minutes).


Can you lie down when you feel the pain and try to sleep it off or is too unbearable and must pain, scream and cry?  My first thought was to try this, but it didn't work. I cant sleep through this, not even while on all of their pain meds.



LasVegas wrote on Jan 4^th, 2012 at 10:28pm:

shadows1177, Is the specialist you have an appt with the end of Feb, a headache specialist/neurologist? A headache specialist/neurologist is the best specialist to visit regarding CH's, but often an internist or PCP (Primary Care Physician) should be able to prescribe you something to tide you over until your appt the end of Feb. I wouldn't accept the end of Feb as your only option, unless you enjoy the pain.  That was sarcasm, but I am serious too. Your regular doctor should be able to prescribe Prednisone, Verapamil and Imitrex injections, along with o2. The only thing you have to lose is your sanity, patience, relationships, marriage, kids?, job?, etc.  I, like many, have lost many of these life attributes due to waiting too long, misdiagnosed, trial/error of meds, ignorant doctors, etc. You truly need to be a self advocate and fight for yourself.  Take a look at that cluster quiz again.  You really should be able to answer all of the questions, regardless of how new you are to this pain.  Share your answers here with us.  What questions were you not able to answer? "Knowledge is power" and this website will educate you to educate others. Plenty of credible info to print and share with regular doctors, neurologists, employers, ER rooms, insurance co's, etc. If you wait, odds are against you and most likely your condition will worsen. If you have CH's, you really need a (1) transitional meds (such as Prednisone), to be started at the same time as you start (2) a preventive med (such as Verapamil) and you will need abortive treatment to control the pain when you get attacked (such as high flow oxygen and Imitrex injections). You need to arm yourself with knowledge so that you can be your own doctor so to say and tell the doctor...no to tylenol...no to pain pills...no to ineffective dosages of known CH meds that work, etc.  Don't settle for anything less than satisfaction.  You have medical insurance, call around nearby cities if you have to travel to get to somebody competent. i.e. I drove 5 hours each way to Mexico just to get Imitrex as I had no insurance and couldn't tolerate the pain. Unless you do something proactive, you are just setting yourself up for punishment that can be avoided and will only have yourself to blame if you don't take the bull by the balls and run. Blunt, but truthful. You mentioned your pain is left sided.  Is it always on the left or sometimes on the right or entire head? Do you feel most pain in/on/and behind your left eye? Do you feel pain in your left side forehead temple? Does your left nostril get congested or run? How long does your pain last? Have you noticed excruciating pain that wakens you from sleep? Does your pain (attacks) occur at the exact same time everyday and every night? These are some of the many CH symptoms/things to share with ANY doctor you hopefully get to ASAP. Can you lie down when you feel the pain and try to sleep it off or is too unbearable and must pain, scream and cry? Please do yourself a favor and read, ask questions and vent.  Why do I bother writing you all this?  Because I care about strangers who also are feeling TORTURE by the DRAGON.  I've suffered 32 yrs and have been taken advantage of by doctors, misdiagnosed, guinea pig to meds that were harmful instead of helpful, etc far too long until I educated myself through the help of this website and learned to be a self advocate among an ignorant medical community. Don't be a stranger! ;) -Gregg in Las Vegas

Thank You!  I will look into this today!



jon019 wrote on Jan 4^th, 2012 at 10:30pm:

Hiya shadows, There are two docs in this area I would recommend...the already cited Sheena Aurora (Swedish) and her former partner...Elena Robinson. Address & Contact Information: Southwest Medical Group NEU Ass 505 North East 87th Avenue Suite 460 Vancouver, WA 98664 Were I you...I'd go see one one of 'em. Dr Aurora has been my treating neuro for 10 yrs....she...to quote: "treats this condition agggressively"..Dr Robinson wrote a letter for me to the insurance company that got me the meds I needed.... Swedish Headache and Pain Center...does get ch...unlike most. Dr Aurora told me...early on...when you NEED to get in....if you can't...call ME. (it was never necessary, I always get in...when I need to). TELL them CH! She's all alone now..it may take a while...it is worth it.... Best, Jon

I will watch for your PM



Batch wrote on Jan 5^th, 2012 at 12:16am:

Hey Shadows, Welcome aboard.  You've come to the right place...  Lots of long time CH'ers and gurus around here and well over a thousand years of collective experience in controlling cluster headaches effectively. I live near Bremerton, WA, so you're only a hop-skip-and a jump away...  Perchance we can meet half-way at Anthony's in Gig Harbor to see what we can work out for you. Check your PM InBox for more details...  It's clear you're having a rough time and it doesn't need to be that way. Take care, V/R, Batch

Wow, kiddo. You are up against it and that's a fact. After reading your responses to the Cluster Quiz, it does indeed sound like CHs in their early stages. For many of us, in the beginning, the hits are all over the place and somewhat unpredictable. Then they settle down and form a "cluster" pattern which is as reliable as an alarm clock. It may take a while before yours do settle in, but I would strongly encourage you to take Batch up on his offer. He's a good guy, an officer and a gentlemen, and a Guru on non-med treatments of CHs. Bring your husband along, too. We need our supporters to help us get to aborts when the pain is driving us crazy and we're not thinking straight. You do have some options apart from the doc. Get on it, girl. We're hurtin' for ya. Blessings. lance

shadows1177,
Hope today is a better day for you.  Glad you didn't find my post too blunt.and that you found it helpful, you're welcome ;)

Below is a link to several photos of Batch and I (and my son) from when he visited Las Vegas around Thanksgiving.

In my opinion, and i'm not one to BS around, Batch is the most knowledgeable member on this site and is sincerely interested in helping others afflicted by CH's.

Take him up on his offer in person, but be leary of phone calls unless you have an unlimited amount of minutes. ;D

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

Let us know how your progress is coming along. ;) 
-Gregg in Las Vegas

I don't want it to "settle" in, I just want it to go away.... My husband is totally lost and doesn't know what to do for me, he knows I'm in pain but cant do anything about it.  I tried an energy drink today, it only made me shaky and sick feeling....but I did try some feverfew as well and that took it down a notch, thats a huge deal for me!  I will try again tomorrow with the energy drink, a friend of mine told me that I drank it to fast.  I couldnt help it...it was slam the drink or slam my head on the pole next to me....  My co-workers are being very understanding, which is great since I am a supervisor.



wimsey1 wrote on Jan 5^th, 2012 at 7:16am:

Wow, kiddo. You are up against it and that's a fact. After reading your responses to the Cluster Quiz, it does indeed sound like CHs in their early stages. For many of us, in the beginning, the hits are all over the place and somewhat unpredictable. Then they settle down and form a "cluster" pattern which is as reliable as an alarm clock. It may take a while before yours do settle in, but I would strongly encourage you to take Batch up on his offer. He's a good guy, an officer and a gentlemen, and a Guru on non-med treatments of CHs. Bring your husband along, too. We need our supporters to help us get to aborts when the pain is driving us crazy and we're not thinking straight. You do have some options apart from the doc. Get on it, girl. We're hurtin' for ya. Blessings. lance

I can be pretty blunt myself so.....  I will try and get together with him since we live soooo close to each other (well a few hours give or take a little).  Its just a matter of finding time and a moment when I actually feel like I can drive that far.  I have had to pull over on the highway a couple of times and my husbands driving doesn't help my head one bit.  I have noticed that anxiety seems to be a trigger and I hate being out of control of my situation. 



LasVegas wrote on Jan 5^th, 2012 at 12:09pm:

shadows1177, Hope today is a better day for you.  Glad you didn't find my post too blunt.and that you found it helpful, you're welcome ;) Below is a link to several photos of Batch and I (and my son) from when he visited Las Vegas around Thanksgiving. In my opinion, and i'm not one to BS around, Batch is the most knowledgeable member on this site and is sincerely interested in helping others afflicted by CH's. Take him up on his offer in person, but be leary of phone calls unless you have an unlimited amount of minutes. ;D START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Let us know how your progress is coming along. ;)  -Gregg in Las Vegas

shadows1177 wrote on Jan 5^th, 2012 at 5:58pm:

I tried an energy drink today, it only made me shaky and sick feeling.... ...a friend of mine told me that I drank it to fast.  I couldnt help it...it was slam the drink or slam my head on the pole next to me....

The energy drinks had a similar effect on me at first until I got used to them. I've no idea why people drink them for pleasure.

Slamming the drink is totally fine, it was a while before I even realised what they tasted like.

Greetings,

Aside from making you shaky and sick did the energy drinks help at all with the pain?

Also, you mentioned Feverfew...I had someone tell me that I should using this, this person claimed to be knowledgeable about Cluster Headaches but in a very short discussion realized they knew very little about Cluster Headaches.

Curious as to what you may know about it?

Also, if any others watching thread have anything to add regarding the Feverfew it would be appreciated.

Blessings to us all,

d

As always much gratitude to those that have suffered before us.

Shadows1177,

Energy drinks containing 1,000 mg of Taurine and also Caffeine must be slammed fast completely at onset of attack to get into the bloodstream ASAP, that is the reason for speed/chugging/slamming it.  Obviously don;t get yourself sick over it, but chug it as fast as you are physically able.  Should feel relief, if at all, within a few minutes.  If no luck, try another flavor/brand or give it up, doesn;t work for everybody and should NOT be consumed wghile on #1 preventive-Verapamil as the Taurine and Verap do NOT mix.

Feverfew, never heard of it and have been on this board since 1999, might've overlooked it though so look fwd to others chiming in.

See if you can get your husband to join as a supporter and he can read and learn a bit too.

-Gregg in Las Vegas

This is one of several responses I found on a quick search. It has worked for a couple of people, but hasn't gained much of a following:

Message started by johnniemo on Feb 17th, 2011 at 10:43am 

Title: Feverfew Extract Works For Me
Post by johnniemo on Feb 17th, 2011 at 10:43am
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My cycle is every other Dec-Jul. I started taking Feverfew Extract(.7 parthenolide) in Nov. The only pain I feel is an occasional little throb that doesn't bother me very much.
The trick is to get it into your system before the cycle starts. I take a pretty high dose, 2 pills 3 times a day.
It is also a natural anti-depressant; keeps me in a good mood. The only problem I have is that it gives me gas. 

Title: Re: Feverfew Extract Works For Me
Post by wimsey1 on Feb 18th, 2011 at 5:40am
--------------------------------------------------------------------------------

Feverfew has popped up now and again...it doesn't seem to have much of a following. Perhaps others who have taken it will write about its effects. Blessings. lance 

Title: Re: Feverfew Extract Works For Me
Post by Bob Johnson on Feb 18th, 2011 at 11:08am
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Yes, has a following for migraine but has not enough benefit for CH to gain much attention. 

The shaky and sick nearly made me vomit and didn't seem to help the pain at all.  I am sure that it was my own doing in desperation to make it stop.  The drink was room temperature, it was a regular sized Nos, and I drank it in under a minute..... bad idea....

Feverfew, I have a friend that is very into herbs and natural healing who was not sure if it would help something like this or not but said that its often used to treat headaches.  So I tried it and although it didn't take the pain away (or work fast) it did take it down a notch.  I took it about 30 minutes before I usually start to get some spike pains in my mid work day, today I will try taking it 1 hour before then.

Oh, and I nearly slept through the night last night thanks to something I read here!  Melatonin!  I don't remember who said it but I found it at WalMart and picked it up.  5 solid hours of sleep before waking up with this stupid pain!!!  And the pains went away (the sharp ones at least) after about 15 minutes.  I don't know who said that but I am super excited about that!!    :D



norkAch wrote on Jan 5^th, 2012 at 8:38pm:

Greetings, Aside from making you shaky and sick did the energy drinks help at all with the pain? Also, you mentioned Feverfew...I had someone tell me that I should using this, this person claimed to be knowledgeable about Cluster Headaches but in a very short discussion realized they knew very little about Cluster Headaches. Curious as to what you may know about it? Also, if any others watching thread have anything to add regarding the Feverfew it would be appreciated. Blessings to us all, d As always much gratitude to those that have suffered before us.

Greetings,

I have been 'playing' with the Melatonin myself. It seems to help me sleep, but the jury is still out on the effect it will have on my serious attacks as I haven't had any in a little over three weeks.

As far the energy drinks go...the one that I have used and like the best is Monster Energy M-3 Super Concentrate - it has 2000mg Taurine and enough caffeine (this isn't listed on the package, but someone from the website chimed in with how much and all I recall is it was sufficient). The thing I liked most about this particular one was the taste wasn't bad and the serving is only a 5oz serving so it didn't fill me up or bloat me.  I've had trouble finding it and the only place I have found it is a local Sheetz gas station.

I am very pleased to hear that you are getting some sleep. From personal experience the continued lack of sleep at the peak of my cycle became worse than the pain.

Blessings to us all,

d

As always - Much gratitude to those that have suffered before us.

Greetings Again,

Just a tip on the M3 Super Concentrate.

It is in a bottle that DOES NOT have a twist off cap you will need a church key.

Just hoping to avoid a little frustration.

Blessings to us all,

d

I use the Aldi brand Red Thunder energy shots.   Less to have to drink and I can keep them in my purse.

Jeannie

Nos may have been too large of a drink to chug.

google redbull under the medications/treatments thread, plenty of energy drink discussion. 

Most of the well known brands such as Red Bull, Monster, Rockstar have Taurine, and some brands refuse to disclose what their ingredients are.  8 oz Redbulls are fast aborts for me especially mixed with o2.

goggle Melatonin under the medications/treatments board as well, plenty of discussions about how many mg, what type of melatonin is best, when to take, what to avoid taking it with, etc.

Thank you everyone! 

I have something wonderful to share!!!!

Yesterday after work I was in really bad shape and went to Target in search of anything that might help.  I was wondering back and forth in the pain reliever isle and the pharmacist asked me what I was looking for and I told him what I had been going through.  He handed me a bottle of Neproxin (which was pretty cheep considering how much money I have already spent on every pain reliever I could find) and told me to take one and to chase it with a red bull.  That is the magic trick!!!!  I have a slight pain this morning buts nothing and might even be from sleeping too much.  The pharmacists wife has cluster headaches, he said that I had the same look on my face that she would get on a bad day.  I assume that the Neproxin will and likely is wearing off, but I am armed and ready and feel freaking amazing this morning!   :D