So I am a 38 year old female living in MS who has convinced herself she has cluster attacks...that's right, not headaches, but attacks, let's call them like they really are. I know for a fact in 2007 when I went to the nearest family clinic cause I had this Excruciating headache for 4 days, couldn't sleep, couldn't eat, rocking back and forth crying....the doctor at that time said I had cluster, sinus, and tension headache.  Being medically uneducated I thought when he said cluster he was referring to the fact that I had multiple headaches that were "clustered" together.  So years go by....every now and then I get these REAL bad headaches. Was told my mother was diagnosed over 20 years ago with cluster migraines.   Now, we ALL know cluster and migraine are NOT the same. So when everybody told me I had migraines, I was like...um...no..I don't have the auras, no nausea, don't have to be still....as a matter of fact when my head attacks hit, I am anything BUT still. It wasn't til June 8 when I called my mom during the worst of my attacks (I was to the point of going to the hospital) and she said....you're having a cluster migraine.  I started bawling right then.  A huge relief swept over me that someone else said cluster...even if she is partly wrong.  So now my next step is to actually get diagnosis.  I don't believe I am a chronic sufferer, cause I will go more than 2 weeks pain free.  My husband says my cycles are about every 4 to 6 weeks. and they usually last 10-14 days with only 1 or 2 days at it's peak with KIP 10.  During the remaining cycle days I wake up every morning with my head feeling like a truck hit it.  I'll have 2 or 3 KIP4/5 on a daily basis.

Any advice on how to properly be diagnosis? I have no insurance, and am thinking my best bet is to go the hospital during an attack.  The worst pain are the TAC's..that shooting searing pain going through my eye....

One other thing I'm curious to know is what other people deem as "precursors" for their impending attack.  I have noticed that when my attacks are at a KIP8-10 level, I have this irresistible urge to "pop" my neck... I'm talking I am cranking my head in all sorts of different direction cause I believe if I can just pop it, this pressure will go away. Does anyone else experience this?

And is it possible to have a cycle consisting mostly of shadows with a few major attacks?

I have joined this group over two weeks ago and have been checking the message boards religiously.  I enjoy reading about others cause it makes me feel like I'm not alone.

KayleyKat wrote on Jun 26^th, 2015 at 3:27pm:

So I am a 38 year old female living in MS who has convinced herself she has cluster attacks...that's right, not headaches, but attacks, let's call them like they really are. I know for a fact in 2007 when I went to the nearest family clinic cause I had this Excruciating headache for 4 days, couldn't sleep, couldn't eat, rocking back and forth crying....the doctor at that time said I had cluster, sinus, and tension headache.  Being medically uneducated I thought when he said cluster he was referring to the fact that I had multiple headaches that were "clustered" together.  So years go by....every now and then I get these REAL bad headaches. Was told my mother was diagnosed over 20 years ago with cluster migraines.   Now, we ALL know cluster and migraine are NOT the same. So when everybody told me I had migraines, I was like...um...no..I don't have the auras, no nausea, don't have to be still....as a matter of fact when my head attacks hit, I am anything BUT still. It wasn't til June 8 when I called my mom during the worst of my attacks (I was to the point of going to the hospital) and she said....you're having a cluster migraine.  I started bawling right then.  A huge relief swept over me that someone else said cluster...even if she is partly wrong.  So now my next step is to actually get diagnosis.  I don't believe I am a chronic sufferer, cause I will go more than 2 weeks pain free.  My husband says my cycles are about every 4 to 6 weeks. and they usually last 10-14 days with only 1 or 2 days at it's peak with KIP 10.  During the remaining cycle days I wake up every morning with my head feeling like a truck hit it.  I'll have 2 or 3 KIP4/5 on a daily basis. Any advice on how to properly be diagnosis? I have no insurance, and am thinking my best bet is to go the hospital during an attack.  The worst pain are the TAC's..that shooting searing pain going through my eye.... One other thing I'm curious to know is what other people deem as "precursors" for their impending attack.  I have noticed that when my attacks are at a KIP8-10 level, I have this irresistible urge to "pop" my neck... I'm talking I am cranking my head in all sorts of different direction cause I believe if I can just pop it, this pressure will go away. Does anyone else experience this? And is it possible to have a cycle consisting mostly of shadows with a few major attacks? I have joined this group over two weeks ago and have been checking the message boards religiously.  I enjoy reading about others cause it makes me feel like I'm not alone.

We don't diagnose.  Get to a headache specialist.

             Potter

A hospital ER is one of the worst places you could go! Our pages are full is misdiagnoses coming from folks who have no traiing in complex headache disorders. General neourologists fall in the same category.

Compounding the issue of poorly training docs is the reality that there are many disorders wich mimic Cluster but which are not headache disorders.

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
======
Best move is to find a headache specialist.

LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

==========
Now the lack of insurance/$ issue.
Call the social service office of the largest hospital in your area and ask them if they can refer you to a free/low cost clinic/agency. Make sure you want a headache specialist, NOT neurologist.

Sadly, we have many folks here who have wandered around for years before getting the reflief which comes with the correct diagnosis.

You'll receive a variety of ways to treat youself but keep in mind that you still need an accuracte diagnosis both for you personal safety as well and relief.

First let state I never asked anyone on here to diagnosis me. I asked best ways to become diagnosised. I've read everyone's stories about going to the wrong kind of doctor. How difficult it is to get diagnosis and the mimic like conditions.  I have already put a call into the local headache clinic and am waiting to hea back. I have to have a referral to go to a neurologist.  Thank you Potter for making me feel even more stupid and embarrassed than I already do.

A sincere thank you to Bob regarding the ER reference. Thank you and I will keep that in mind. I was thinking more along the lines of it getting documented somewhere in my medical record with the actual symptoms. 

Again, for future response to this post, I AM NOT ASKING TO BE DIAGNOSISED.  That's for a medical professional. I'm simply asking others opinions and experiences. 

G'day KayleyKat, you're certainly not alone, so welcome home.

Your plan of finding a headache specialist is the best plan by far and you can help him a lot by keeping a headache journal - time of every hit, duration, pain level, all the details you can think of.

As to precursors, or triggers, the list is longer than your arm. Everything from alcohol and chocolate (the good bits) to petrol, MSG and pretty colours. Everyone has to work it out for themselves then there's those with no known trigger at all.

And popping your neck? I swear by it. Doesn't help but I do it all the same.

There's light at the end of the tunnel so keep pushing,

Brian down under.

Hi Kayley and welcome

Bob is spot on in saying to not go to ER to get a diagnosis. Lots of people have posted about experiences varying from being turned away as they are considered to be "drug seeking" to totally incorrect diagnosis and treatments.

What you need to do is to identify a headache specialist who really does have skills and experience of CH from treating people with CH. A neurologist or GP is unlikely to have these attributes and the risk is that you'll get a diagnosis that isn't the right one, which will result in the wrong medication, etc., especially as there are also some other things that mimic CH.

So do call up and check out their skills and experience. Make sure you ask if they have other CH patients.

And don't feel stupid or embarrassed. Having CH or something similar does not make you stupid, it isn't something you've done or not done. Everyone here has CH or supports someone with it, so everyone knows just what you're going through in having severe head pain and trying to get that critical diagnosis. You are not alone, but part of the world wide family.

From your questions, precursors seem to be fairly individual. My partner spots my speech changes slightly, but things vary a lot. As for during a bad CH, lots of people have reported all sorts of things from banging heads against things to injuring other body parts as they try to distract themselves.

Cycles can vary quite dramatically between different people and even between cycles, so a pattern of mostly shadows with a few major CHs is possible as is many other permutations.

Do read up on everything you can find about headache, not just CH, as it is possible that you have CH, something else or you could be one of the lucky ones who get multiple headache types.

Keep a headache diary too, noting when, where, how long, pain level, symptoms, possible triggers, etc. This can help with the diagnosis.

And keep us updated, we can give suggestions based on our experiences.

Hi Kayley and welcome,
I was just wondering what preventatives you have been
on, and what you are using as an abortive, i.e. Imitrex,
oxygen?

Their is a test you can take, to see if your headaches
fit into this category, the link is to your left on this page,
cluster quiz.

Hoppy

KayleyKat wrote on Jun 26^th, 2015 at 5:53pm:

First let state I never asked anyone on here to diagnosis me. I asked best ways to become diagnosised. I've read everyone's stories about going to the wrong kind of doctor. How difficult it is to get diagnosis and the mimic like conditions.  I have already put a call into the local headache clinic and am waiting to hea back. I have to have a referral to go to a neurologist.  Thank you Potter for making me feel even more stupid and embarrassed than I already do. A sincere thank you to Bob regarding the ER reference. Thank you and I will keep that in mind. I was thinking more along the lines of it getting documented somewhere in my medical record with the actual symptoms.  Again, for future response to this post, I AM NOT ASKING TO BE DIAGNOSISED.  That's for a medical professional. I'm simply asking others opinions and experiences.

You took offense at succinctness. 

            Potter

Hoppy,

I'm not on any preventive or treatments as I have yet to be diagnosised.  I did however take the quiz you are referring to and it said if I answered yes to any of the last 6 questions then I probably had cluster and to see a doctor. I answered yes to 5 of the 6.

Kayley, Well in one way that gives you some peace of
mind, but in other, I expect your asking yourself why
me, as we've all done at one time or another. So, now
it's time to see a Headache Specialist, and get some
medication so you don't have to put with all the pain
you've been enduring. I wish you well, and pain free
days ahead.

Hoppy

           Kayle,  These started in 2007?  Have you been able to find any pain relief in the last 8 years and if so, using or doing what? While you're not looking for a diagnosis here  and won't find one here we can still give you lots of clues especially if we have more info. The reason I say this is because some of the info in your first post is kinda counter to a cluster. I'm no doc but a 4 day cluster would put me in the grave. While we're all different, one of the trademarks of a cluster is the short duration... half hour to 2 or 3 hours, rapidity of onset and departure, intensity of the pain, etc.  So, until you get a proper diagnosis, let's hear more about ya.

     Sean

Kayle... For years I've suffered with BOTH chronic CH and Chronic Migraines - sometimes I have a little trouble figuring out which one is hitting.. so your mom may be having both also.. (and migraines are inherited - we don't have a clue about CH or whether it's inherited).

Ok, UNTIL you get in to see a headache specialist (and they rule other things out - which an MRI should do - and if they don't run one - get THEE to another doctor).. you might check out the D3 regimen.. It's working for a lot of us. I've been PF since Oct 2013 and swear by it. Go to the medications tab and if you still have trouble with it - get hold of Batch in a PM. He's great about helping. He's our D3 guru..

My sign (that my office assistant could spot before I knew I was going to get hit) was my left eye closing. The pain (when it hit) was instant and would hit with force. And my left ear would cramp.

Hang in there and let us know how you're doing.. Welcome to Clusterville.. :-*

Hi Barbara,

It's interesting what you say about your left ear cramping. Could you describe what that feels like?

I get the pain on the whole left side. OK, it is centred around the eye but radiates from there to the top of my head down through my teeth, and into my jaw. In a bad hit it effects my ear too.

So I'd be interested in your description.

Thanks,

Peter.

Hey, KayleyKat, how ya getting on? Any word from the headache clinic?

We care and we worry,

Brian down under.

  Thank you Brian, For saying that. I've been wondering too and hoping she'll come back.

                         Sean

                                       

Thanks Brian for your concern and don't worry Sean, I haven't gone anywhere. I just haven't posted on this thread. But I'm here everyday, several times a day.

I believe I am out of cycle. I've been doing a lot of recollection and have seen the pattern of twice a year for as long as I can remember. During April and October give or take a month in either direction.

The headache that sent me to the doctor after 4 days was not a constant pain. It was the severe pain happening 5-6 times a day, not allowing me to eat or sleep. So I didn't have the headache for four days, it was the fourth day of a bunch of headaches that seemed continual due to the uncomfortableness between the attacks.  The last major headache I have had was 2 weeks ago. I have the occasion TAC pain over my eye every week or so. I call that my "shadow". 

Still no word back from the headache clinic. I swear it's like they don't want any new patients.  So it looks as if I will keep up the headache diary I started after the attack on June 8th that led me to this site.  And hopefully I'll have better luck in the spring.

Here's to hoping that the Beast doesn't change his routine...

Kayley

Hi Kayley,
I understand fully how we feel after visiting some headache clinics, its something a lot of us experience and doesn't help the angst we go through. But, you've started the ball rolling, the headache diary is invaluable and will be a big asset as you go down this journey !
Hopefully you hear positive news soon and the ailment stays at arms length until you have some confirmation.
good luck
colin

   Hi Kayley, That spring and fall thing drives me nuts. There's an external, environmental influence at work here and it seems that if we could understand it better maybe we could get a better handle on what causes clusters.

                              Sean