Hello, wow am I glad to have discovered this forum!  I can't believe that only in the last week have I discovered what type of headaches I might really be having....

I am 46 years old, female, live in Georgetown, Texas.

I have had headaches all my life so it's hard to say when they started.  As a teen, they were tension/exhaustion headaches and I could sleep them off.  In my 20's and 30's, they became more like migraines and were monthly...like clockwork.  In the early days of this, I could take 600 mg of Ibuprofen and drink something with caffeine and that would knock them out.  Later when that stopped working, I went on a birth control pill that I take continuously to try and keep my hormone levels stable.  It worked for over a year...no migraines. 

Then in my 40's, things changed.  Many of the symptoms described by other CH sufferers started happening to me...I wake up at night with serious pain, have to get up, no pain meds work, nasal congestion on one side sometimes, feel like I want to put pressure on or hit the area of pain, can't sleep, etc. My Dr. prescribed Sumatriptan pills but of course they did nothing and gave me a "creepy crawly" feeling.   

Then last week...when at my wits end and researching migraines...stumbled upon information about cluster headaches.  Wow!!!!! 

One thing different about my headaches though that I'm curious to see if anyone else experiences...I don't have separate attacks throughout the day...once my pain starts during the night, it stays for many hours through the next day, and amazingly I can pretty much count on it lasting until between 4 and 6 p.m., then goes away.  Sometimes it fluctuates in intensity a bit...usually intensifying between 12 and 2 pm....but then gone by the evening until it starts over.  My loving and supportive husband reminds me...."hang in there until 4 pm, ok?"....and that's what I do...somehow...but my whole day is ruined.  This goes on for 2-5 days in a row, then I get a break of 2-4 weeks, then it starts over again.  Does anyone else have this same type of cycle?

I am also pretty sure there is a seasonal element to my CH...having lots of trouble right now, in the winter...but interestingly I have pain much less often when the sun is out.  When there's high humidity, lots of clouds and/or high mold counts...much more trouble. 

I have not seen a neurologist, headache specialist, or been officially diagnosed with CH.  I have not tried anything suggested on this forum yet besides Sumatriptan.  I am thrilled to see there are new options for me to try that I never knew existed!!

I look forward to replies to my post...thanks in advance to all of you for your help and support!

Cluster Headaches don't normally linger the way you are
describing. maybe take the cluster quiz, the link is to your
left on this page, and see how you go.

Hoppy.

I did take the quiz, and most everything fits, except I don't get droopy eyelids. 

Hi mjones
Sometimes, if not treated, my attacks last a couple of hours at a time, but I once had one that went on for something like 14 or 16 hours - can't remember exactly. It is unusual, but the one constant thing among us is that no two of us are exactly the same.

It's vital that you see a headache specialist because there are many other headache types which are very similar, so it's difficult to diagnose. Many of us have suffered for years (5 in my case) without a diagnosis, while the doctors faff around with pain meds etc, which just will not work.

If it does turn out to be CH, then sumatriptan is the best abortive drug. The pills are too slow to be of much good, but the auto injections are fantastic and will work in about 5 minutes.
Also Oxygen is the safest abortive because it's drug free and you can use it as often as you need to. I use the oxygen at home and save the injections for when I'm out. But, it must be used correctly for it to work. You need a flow rate of at least 15 litres per minute (more is better) and a non rebreather mask. If you get either of those two things wrong it will not be effective.

Check out these boards for info on the vitamin D3 regime which has had brilliant results for many of us.
Hope this helps
Maz.

Just a thought.......

Quote:

but interestingly I have pain much less often when the sun is out.

Have you had your vitamin D3 level checked?
There is a D3 treatment for CH that has been very successful for many folks.

Glad that you found us! First, it's very unwise to try and diagnose and treat yourself. There are, for example, many serious disorders which mimic Cluster but which are not headache disorders. 

We recommend, if at all possible, that you consult a headache specialist for a diagnostic work-up. (General neurologists seldom have the depth of training/experiece with headaches unless you are willing to question them closely about their experience.)

We are not in a position to make this judgment and so urge you to avoid starting any treatments without a good diagnosis.
====

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.

mjones wrote, I did take the quiz, and most everything fits, except I don't get droopy eyelids.

I'm more inclined to think they are not CH's you are
suffering from, therefor its best to check in with a
Headache Specialist to get a proper diagnosis.

Hoppy.

Thank you all for the information.  I will try to find a headache specialist.  I have never had my Vitamin D3 checked but sounds like something I need to do.  If I don't have CH then I surely need to find out what I do have.  And if it is CH, hopefully some of the methods on this site will help me.  Thank you for being available to me for support. 

And we'll keep supporting you while you always let us know how you're getting on.

All headaches are horrible.

Hello,
Your pattern seems unusual, but then I have a very irregular pattern, so who knows. Also, in the dozen or so years I've lived with this I have never has a droopy eyelid either.
The other guys are right. Get to a headache specialist Asap. I wasted about 6 years before I got a diagnosis and was referred to a specialist. Only happened because my regular Doctor was on holidays and a locum was on duty that day. He took about 3 minutes of listening to me before he said CH.
2 days later I was in hospital being scanned and my life has improved dramatically since. Still in the thick of it, but I now know what it is and what to do.
Get to a headache specialist soon. Don't waste the years I did.
Good luck,
Peter.

Thank you Peter.  I have been away for a few days, so I apologize for my delayed response.

I am going to look further into finding a headache specialist. There aren't too many to choose from in Austin, and I made the mistake (ha) of reading online reviews about them and some of them aren't too favorable.  I may have to go to Houston or Dallas.  I'll let you know what happens. 

Hi,
Be cautious about on-line reviews, they are very subjective and you have no idea what expectations the writer had going in.
good luck,
Peter.

Good advice Peter, thanks.  Is there any way through this forum to get a recommendation of a specialist in the Austin area, or connect with someone else who has seen a specialist in this area?

On the left of your screen is a tab called "where we live". Have a look there and you will find 26 people in Austin.  Also, Bob has given you some suggestions which will help.
Maz.

Thank you!!

mjones wrote on Jan 16^th, 2015 at 2:30pm:

Good advice Peter, thanks.  Is there any way through this forum to get a recommendation of a specialist in the Austin area, or connect with someone else who has seen a specialist in this area?

Hi mjones,
Sorry to read you are suffering and in pain without the professional help of a doctor who truly knows how to effectively diagnose and treat Cluster Headache sufferers.

You asked for a referral to a good doctor in the Austin, TX area.  It just so happens that a little over one year ago, I compiled the most comprehensive list of all doctors familiar with Cluster Headaches throughout the USA and Canada.

The doctors listed below were all recommended by other CH sufferers residing in Texas.

Austin
Dr. Robert M. Cain
Associated Neurological Specialties

Dr. Craig R. Dubois
CHARM-Center for Healing and Regenerative Medicine

West Lake Hills
Dr. Rajat Gupta
Headache & Pain Center

Dr. Marci A. Roy
Little River Health Care Neurology

This completes my list of Austin area doctors who have all been referred/recommended from fellow Cluster Headache sufferers.

Wishing you and every CH'er in the Austin area good luck finding a doctor you are pleased with!  ;)

-Gregg in Las Vegas

Thank you so much!  I was running into difficulty nailing down specific names through other websites.  Thank you so much for your hard work in putting together the list that is now helping so many others.

Hello, wanted to update you all on what's happening with me.  When I first joined this forum, I was dealing with some health problems with my son, had just gotten over bronchitis myself, and was getting ready to head off on vacation to New York.  So I had no opportunity to find a neurologist at that time.  I started myself on 5000 units Vitamin D3, fish oil and the Costco Multivitamin to see if I could get any relief until I could get back from my trip and find a doctor.  I wasn't trying to diagnose myself, just trying to get some relief or start the process of relief until I could see a Dr.

I thought it was helping because I didn't have a headache for about six weeks, when I had been having clusters of headaches every two weeks or so.  But then I got slammed again last week. 

So I called one of the doctors on the list that Gregg in Las Vegas provided, Dr. Edward Fox, since he is closest to my home.  The receptionist told me Dr. Fox doesn't treat headaches (he specializes in MS) but that Dr. Craig Couch, in the same practice, is who they refer all headache patients to.  So I made an appointment in mid-March (the soonest opening they had for new patient).  Interestingly, Dr. Couch is my father's neurologist, so I have met him several times and I like him.  So I feel good about that. 

I will keep you posted on what happens at my appointment.   Gregg, you may wish to remove Dr. Fox from your Austin list and I'll update you about Dr. Couch.  I so appreciate your list though because it pointed me in the right direction. 

--Mariann

Done, thanks for the heads up.  Keep us posted Mariann ;)

-Gregg in Las Vegas

I will Gregg.  I hope to be of help to others as you all have been to me. 

Hello all, I'm back with an update. 

I went to my first neurologist appointment yesterday with Dr. Craig Couch of Central Texas Neurology in Round Rock, TX.  He is the headache specialist in their group of about 5 neurologists.

The short story is, in his opinion I do not have cluster headaches.  He said my symptoms don't really match the "ice pick" pain that is typical of clusters, and he has almost never in his career seen a woman with clusters....always men. 

I described all my symptoms, and he listened carefully and asked lots of questions. I felt like he was thorough with that and also in the physical exam he performed. He then told me that my symptoms are very unusual.  He said my headaches are not typical tension, migraine or cluster headaches.  His conclusion was that my headaches sound the most like a condition called Occipital Neuralgia, but he's not 100% sure on that diagnosis.  He also reached this conclusion based on pain I felt when he pressed on certain areas at the base of my skull/top of my neck.

I have not had a lot of time yet to research Occipital Neuralgia (ON), but some of the symptoms I have briefly read about sound like what I experience, and some do not. Dr. Couch recommended two things to start with....physical therapy for my shoulders and neck to relieve pressure on the nerves, and also a prescription for BUTALBITAL/ACETAMINOPHEN/CAFFEINE TABLETS which he said should help during attacks if I do indeed have (ON). 

If no improvement, we can move to next steps of an MRI, preventative medication, etc. 

Have any of you heard of ON and had any experience with it?

I guess I'm feeling relieved that I don't have clusters, but anxious that my symptoms are so unusual and this experienced Dr is unsure of my diagnosis.

--Mariann

Gregg,

I just recently heard about a new headache clinic opening up in Round Rock, Texas.  It's a Scott & White Clinic.  I thought you might want to add it to your Austin-area list: 

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It's nice to know that soon there will be another resource close by where I live that I can access if I need it.

--Mariann

Hi Mariann,
Have you taken the cluster quiz? The link is too your
left on this page, it will help rule out if they are, or
not CH's your experiencing.

Hoppy.

mjones wrote on Mar 12^th, 2015 at 7:53pm:

Gregg, I just recently heard about a new headache clinic opening up in Round Rock, Texas.  It's a Scott & White Clinic.  I thought you might want to add it to your Austin-area list:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE It's nice to know that soon there will be another resource close by where I live that I can access if I need it. --Mariann

Hi Mariann,
I do not add doctors to my list unless they are recommended by those suffering from CH's.

Just because a doctor claims to be a headache specialist or just because somebody went to school and studied neurology does not qualify them to effectively treat somebody suffering from CH's. At least not qualified on any of my recommended doctor lists, as I am very select. My lists are strictly based on positive feedback/recommendations from fellow CH'ers.  Thanks for the thought though!  ;)

Congratulations on not having CH's, you should feel very relieved you will not have to endure the living nightmare we here on this site all share in unfortunate common.

An MRI is a great tool to start the diagnosis process. Best wishes ;)

-Gregg in Las Vegas

mjones wrote on Mar 12^th, 2015 at 7:47pm:

...  He said my symptoms don't really match the "ice pick" pain that is typical of clusters, and he has almost never in his career seen a woman with clusters....always men.

Both of these statements bother me and don't ring true of a doctor experienced in CH.

I truly hope I'm wrong.

AussieBrian wrote on Mar 13^th, 2015 at 2:09am:

mjones wrote on Mar 12th, 2015 at 7:47pm: ...  He said my symptoms don't really match the "ice pick" pain that is typical of clusters, and he has almost never in his career seen a woman with clusters....always men. Both of these statements bother me and don't ring true of a doctor experienced in CH. I truly hope I'm wrong.

My thoughts too Brian.

I will keep at it....I really think the anti-inflammatory regimen is helping me....so I'll see what happens.

Hey Mjones,

Dr. Todd Rozen, MD, FAAN, Geisinger Medical Center, Wilkes-Barre, PA conducted a survey of 1134 people diagnosed with cluster headache here in the US, October through December of 2008...

Of the 1134 survey participants, 816 (72%) were male and 318 (28%) were female. 868 patients had episodic CH while 266 had chronic CH. 

These numbers are consistent with the majority of other major surveys of cluster headache sufferers.

This survey produced some additional jaw dropping results... like only 25% of CH'ers are diagnosed with this disorder during the first year and over 22% took 10 years or more to get a valid diagnosis of cluster headache.

Give your neurologist the following link:

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Dr. Rozen MD, is one of the leading experts here in the US treating patients with cluster headache and other trigemeno-autonomic cephalgias (TAC).

BTW, Dr Rozen has been suggesting the anti-inflammatory regimen with 10,000 IU/day vitamin D3 to his patients with CH...

Take care and please keep us posted,

V/R, Batch

........."always men".   Er.. I don't think so. Another doctor who, just like mine, thinks women don't have clusters. And "almost never" doesn't mean never. It is rarer in women, but there are thousands of us.

Hi Maz,
             It must be frustrating for you to hear that !
I mean clusters, as you know are bad enough ! but being a woman, presenting the symptoms, and not get a proper factual based diagnosis, must be horrific for females to go thru !   it was bad enough for me as a male to go thru the process, quite scary actually, and it was a process, the m.r.i, blood tests, countless refferals etc etc  but to have cluster diagnosis eliminated through ignorance  wow.....
   hope all's well with you maz ?
regards
colin

Hi Colin, yes it makes me so mad. After my GP couldn't help me I saw a consultant at the pain clinic and he thought I had trigeminal neuralgia and treated me for that.Years of useless pills and 2 nerve blocks later I was at rock bottom and asked for surgery. I was referred to the neuro surgeon and as soon as I told him my symptoms - the droopy eyelid in particular - he said I had clusters and should see a neurologist. All these appointments were months apart and by this time five years had gone by. I was so relieved to finally have a diagnosis. So I got a referral to a neurologist and he said women don't get clusters. I was devastated to be back at square one with another round of meds that didn't work. I mean, surely he can read up on it. If I can, he can. There are better doctors than him who KNOW women DO have clusters.

I did my own research and read every word on these boards and asked for help here. Armed with my new knowledge I went to my GP who is fortunately very open minded and was trying hard to help me. I asked for sumatriptan injections, and later oxygen and she gave me the prescriptions.

I just don't understand the mentality of my neuro. He has suggested all the other headache types and treated me for them, to no avail. I have all the symptoms of CH and the CH meds work but he still insists it's not. [smiley=deadhorse1.gif] But he can't tell me what it is.

I don't profess to know more than a qualified doctor, but what else does he need. To be perfectly honest he's so arrogant I think he just won't back down now. He's also EXTREMELY rude.

I have an appointment with him on 2nd April - this is a follow up to my last appointment 14 months ago to find out how  indomethicin worked. 14 months for a follow up..... need I say more. Can't say I'm looking forward to it.

I am in cycle at the moment, but not more than K6 up till now, and managing well with the Suma and 02. The main problem is lack of sleep as they all come at night. Had 4 last night.
Other than that, yes all is well with me, thanks for asking. How about you?
Maz.

Hi Maz,

Sorry to hear you're in a bad cycle right now.

Your account almost exactly mirrors mine.. 5 years back & forth. No diagnosis. Appallingly arrogant neurologist. I went to him for a second opinion because I too was at the stage of considering surgery. 3 visits and €600 euro later he was still p!,,ssing about with a diagnosis, even though I had that sorted about 2 years previous.

What really got me angry was that the consultations lasted no more than 10 minutes and every time I spoke he was glancing up at the clock behind me.

Anyway, my next appointment was set for 5 months later (i.e. Last January) and I simply didn't turn up. Bad manners begets bad manners.

Also, like you, my GP is way ahead of the curve on CH and even read up on Batch's D3 programme and endorsed it. Have you looked at the D3 and discussed it with your GP?

I have been chronic for the last 2 years, with attacks every day and night,  up to 8 weeks ago, when I started the D3. Still get hits, but not as severe or frequently, so it's going in the right direction.

So, it's not entirely down to being female, but I guess you have that extra frustration to deal with.

Keep yourself well and I hope the current cycle ends soon.

Peter.

Hi Peter
Your neuro was watching the clock - mine actually got up and walked behind me and opened the door to see me out. I was in mid sentence and I had stuff I wanted to ask, but he almost pushed me out of the door. Perhaps he was embarassed because he was wrong and I was right.

My GP is not really ahead of the curve as you put it, but she is open to suggestion. She openly admits that I know more about the condition than she does and provided there are no contraindications she gives me what I ask for. She was also agreeable to the D3, and I've been taking it for over a year now, but sadly it hasn't worked as well as I'd hoped. However, my hits ARE milder than they used to be - K6 or less as apposed to 5-7 hits per day of K9 or 10. So maybe that can be attributed to the D3.

My GP also said this forum was a great idea, for support and to learn from others. The neuro told me not to take any notice of rubbish I found on the internet as I would be severely misled.

I also considered not turning up for my appointment, but I'm determined to stick to my guns. He cannot keep denying that my symptoms and meds point to CH. We've already gone through all the other headache types, so if he insists it's not CH, I'm going to insist that he tells me what it is.

If he comes up with any new meds to experiment with, I will try them, but I'll always keep my Suma and 02 because I know they work.

I'm so glad the D3 is working for you. If my milder hits are down to it too then I guess it's working for me too, up to a point. Either way, I'm far better off now than I was before, with consistant K9s and 10s and no meds. Keep it up.
Maz.

Maz,

Good God, he sounds like a nightmare. Personally, I wouldn't waste my time.

I'm glad the D 3 is doing some good. Do you get your levels checked regularly?

The link below may be of some interest, or you may be familiar with this already.

I have been using this for a couple of years, for emergency situations only, as it's not cheap to buy. But it has got me out of a bind once or twice, particularly at work.

Dr Juana Marin trained me on the use of the device while I was under the care of Dr Martin Ruttledge here in Dublin. She's based in London. If you want to research either herself or the device, there's plenty of stuff on the web under her name and under  gammaCore.

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Mind yourself.

Peter.

I find it amazing that I'm still reading posts on here,
it can't be CH's, women don't get them, when research
has proven the opposite, I have to wonder where these
dickheads come from. The same applies! 5yrs to be
diagnosed, what a joke. I remember my first attack
vividly, and going too see my GP back in 1969, straight
away he thought they could possibly be CH's, he popped
me into hospital for the normal tests, Xrays and a lumber
puncture, three days later I was diagnosed as suffering
from CH's, and sent home with Migral tablets (Ergots),
and spent the next thirty six years swallowing them down
until 2005, when Imigran hit the scene. I've been CH free
since 2012, after starting the vitamin D3 regiment.

Hoppy.