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justjill

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clusters AND migraines?
Apr 25^th, 2012 at 9:47am

Can a person be suffering from both clusters and migraines at the same time. I went to a neurololigist yestetday. He was terrible and I wont be going back to him. I know I had been suffering from cluster headaches. He said that only OLDER MEN get clusters and after they're gone, the pain stops. My pain only faded to a managable level and never fully went away. My brain was left "sore" feeling until the next one hit. Topomax took the clusters away but left me with forever head pain. The dr said i'd be on meds until i reached menopause. I'm 40 now. I want this all to just go away. Most of all, I want to put a name to what i have and not be treated like a crazy little girl by some jerk dr.

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justjill CH.com Newbie Offline I Love CH.com! Posts: 5	Re: clusters AND migraines? Reply #1 - Apr 25^th, 2012 at 9:53am I wanted to add that it was my GP that diagnosed me with cluster headaches. I've been suffering with head pain since February of this year.
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Bob Johnson

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Re: clusters AND migraines?
Reply #2 - Apr 25^th, 2012 at 12:53pm

Curr Pain Headache Rep. 2007 Apr;11(2):154-7.

Cluster-migraine: does it exist?

Applebee AM, Shapiro RE.

Given C219B, Department of Neurology, University of Vermont College of Medicine, 89 Beaumont Avenue, Burlington, VT 05405, USA. robert.shapiro@uvm.edu.

The nosological boundaries between cluster headache and migraine are sometimes ill-defined. Although the two disorders are distinct clinical entities, patients sometimes present with clinical scenarios having characteristics of both headache types, but either do not fully meet International Classification of Headache Disorders, Second Edition diagnostic criteria for either disorder or have sufficient symptoms and signs to allow both diagnoses to be present. These occasions provide diagnostic challenges and include what is variously described as migraine-cluster, cyclical migraine, clustering episodes of migraine, cluster with aura, or atypical cluster without autonomic symptoms or severe pain. Patients with symptoms overlapping cluster headache and migraine likely reflect the inherent clinical variability in each of these two disorders, rather than distinct diagnostic entities in their own right.

PMID: 17367596
============
Print the PDF file, below, and use to discuss treatment options with any doc you see--and for your learning.
==
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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; On-line screen to find a physician.

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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.

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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.

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(96 KB | 16 )

Bob Johnson

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Karla CH.com Alumnus Offline One of Many and Never Alone - Join OUCH Posts: 3837 x1\|Madison WI USA Gender:	Re: clusters AND migraines? Reply #3 - Apr 25^th, 2012 at 3:37pm I get both migraines and cluster headaches. It is possible. As far as only men getting ch that is a bunch of hog wash. The dr is obviously not up to date on current research. Fire him and find a new neurologist who specializes in headaches.
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Marc1985

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Re: clusters AND migraines?
Reply #4 - Apr 25^th, 2012 at 3:43pm

justjill wrote on Apr 25^th, 2012 at 9:47am:

Can a person be suffering from both clusters and migraines at the same time. I went to a neurololigist yestetday. He was terrible and I wont be going back to him. I know I had been suffering from cluster headaches. He said that only OLDER MEN get clusters and after they're gone, the pain stops. My pain only faded to a managable level and never fully went away. My brain was left "sore" feeling until the next one hit. Topomax took the clusters away but left me with forever head pain. The dr said i'd be on meds until i reached menopause. I'm 40 now. I want this all to just go away. Most of all, I want to put a name to what i have and not be treated like a crazy little girl by some jerk dr.

First of all, I started getting CH's when I was about 19-20. So saying they only occur in older men is false. Secondly, people who are susceptible to Migraines, usually get them because of a stressful situation, CH's are extremely stressful for the person experiencing it. I know in more than one occasion I have had a bad CH attack and it has left me with a raging headache for the rest of the day, in some cases more than a day. Im no expert, but I dont see why a bad CH attack could not leave a person with a migraine.

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Batch

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Re: clusters AND migraines?
Reply #5 - Apr 25^th, 2012 at 5:52pm

JustJill, Karla,

The odds are both of you are vitamin D3 deficient. The best way to find out is to see your PCP for the lab test for 25(OH)D, the serum level metabolite of vitamin D3. You can also order the home blood spot test kit from ZRT labs for $65... No Rx required... See the following link:

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The normal reference range for 25(OH)D is 32 to 100 ng/mL, but we've had CH'ers with active CH test as high as 42 ng/mL.

Moreover, CH'ers who have gone pain free using the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and then gone in for this lab test have all had serum concentrations of 25(OH)D between 60 and 110 ng/mL.

Now for the good news... Migraineurs respond to the anti-inflammatory regimen as well. I currently have three chronic migraineurs I'm tracking closely who are taking the anti-inflammatory regimen.

All three had previously suffered regular monthly bouts of migraine headaches for an average of five days to a week each month. All three have been completely pain free of their migraine headaches since starting this regimen. Two for over three months and one for 16 months...

All have commented they feel so much better now that they no longer need to take preventatives or abortives... which didn't really work all that well and frequently carried undesirable side effects...

All are taking the supplements shown by brand below from Costco... the best price... $35 or 20 cents a day for a five month supply...

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The dose is simple... Take two of each... Joyce and I take ours in the morning but you can take them at night before bed just as well... Some folks split the dose and take half in the morning and the other half prior to bed. You can take the calcium citrate tablets at any time with or without food. These calcium tablets are also formulated with additional vitamin D3 cofactor minerals, magnesium, zinc and boron.

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This is a very healthy regimen that's actually good for you, your brain, eyes, heart, skin and the list goes on... If you find like many of us taking this regimen that you have more energy and that makes you physically more active... don't be surprised if you drop a few pounds and inches where you don't need them...

My wife Joyce has been taking this regimen since December of 2010... She loves it... No more migraines and no monkey bites. She bounces around the house and yard like a kid again with more energy than I've seen since she was a pitcher in the Congressional and White House slow pitch league in DC.

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She also just kicked the heck out of 74 last Christmas... Go figure...

The only word of caution is this regimen tends to make men and women more fertile... but then what's not to like about that...

As far as who to see for medical advice on treating a vitamin D3 deficiency and your migraines for that matter, I think you'd be better served by starting with local Integrative/Homeopathic physicians...

They're much easier to get to without a consult and they do know how to treat a vitamin D3 deficiency... The next choice would be an endocrinologist. They're usually up on the latest dosing schema for vitamin D3 deficiency.

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Apr 25^th, 2012 at 5:54pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Mike NZ

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Oxygen rocks! D3 too!

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Re: clusters AND migraines?
Reply #6 - Apr 25^th, 2012 at 7:39pm

Yes, it is perfectly possible to get both and I'm another person who is "lucky" enough to have this combination, with both being diagnosed by a good neurologist.

The comments from your GP indicate that they are 20+ years out of date with their CH knowledge, so it's time for you to see a neuroligist who specializes in headaches to ensure that you get the correct treatment.

Quite a few people report different things once a CH has gone, for some it's elation that it's over, for others, it can leave a residual, lower level headache. I can have both, with the more severe CHs sometimes leaving a residual headache, which a Red Bull can help with.

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justjill

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Re: clusters AND migraines?
Reply #7 - Apr 26^th, 2012 at 12:38am

Thank you all for your words.
I am currently looking for a new dr.
I also decided to get off of the topiramate, which took away the CH but gave me more migraines.
I want to be drug free as much as possible. So I'm going to fight this and try to find alternative ways to deal with the pain. Water, oxygen, herbs and vitamins... I'm ready to fight.

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Tara Ann

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Re: clusters AND migraines?
Reply #8 - Apr 26^th, 2012 at 6:29am

Ok this is coming from sleep deprived me... but wanted to throw my 2 cents in so ya know lol. I'm 35 (ouch that still hurts saying that) and started with migraines around 15-16. Clusters came in my 20's .. my clusters are chronic and the migraines are only occasional. But when things are rough headache wise, the two headaches bounce off eachother (hope that makes sense) There sure is a difference between the two pains but they make eachother worse. Also on topamax at the moment. .. I'll be sure to recheck this thread later

hugz and glad u arent' going back to that stupid doctor.

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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: clusters AND migraines? Reply #9 - Apr 26^th, 2012 at 7:40am In a survey of over 12,000 clusterheads, 72% said they started before age 30.
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tachead CH.com Junior Offline I Love CH.com! Posts: 93	Re: clusters AND migraines? Reply #10 - Apr 26^th, 2012 at 7:05pm Cluster/migraine.yes.chronic.....yes...female...yes, anything is possible. Probable is another thing. I think the docs use probablity in their diagnosis protocol. tachead
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DDavid CH.com Newbie Offline I Love CH.com! Posts: 3	Re: clusters AND migraines? Reply #11 - Apr 30^th, 2012 at 7:23pm my wife gets migraines and clusters but not at the same time or consecutively. Obviously the doc needs to update his info. good luck with your fight
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Darkfire

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Re: clusters AND migraines?
Reply #12 - May 7^th, 2012 at 1:41am

Yes. I have migraines w/ and w/out aura. I get migraines without pain. That scared my first neuro right out of treating me. He looked through my eyes could see the constriction and was very freaked out. I get CH's that turn into Migraines. They are very different animals as in the type of pain. I have had a CH and a Migraine at the same time and yah it kinda makes you rethink the whole living process.

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Mike Bernardo CH.com Veteran Offline I Love CH.com! Posts: 231 Chesterfield, NJ Gender:	Re: clusters AND migraines? Reply #13 - May 7^th, 2012 at 10:59am I'm a 41 year old male. Started with CH about 4 or 5 years ago. I got aura then. I started migraines about a year ago. The GREAT thing about this head issue is there are no rules.
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coach_bill

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Re: clusters AND migraines?
Reply #14 - May 7^th, 2012 at 8:44pm

Jill

Frickingawright!!!! when i rolled up on this website over 4 years ago i was just as lost as the rest. I just kept looking for way to get back to normal life without being on meds. it was a kick in the gut when the doctor told me id be on drugs for life. I.E varpamil, and topamax. Just the way he threw it out there at me like " your just going to have to accept the fact that this syndrome requires this"

Total bush league stuff. anyway have you looked at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Read the about us and if you have any questions please ask. Also 4 years med free and counting.

Coach Bill

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boy i cant wait till it's my turn to give him a headache. paybacks a bitch

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E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: clusters AND migraines? Reply #15 - May 7^th, 2012 at 10:34pm Chronic clusters, migraine, idiopathic stabbing HA, a variant of that and good old fashioned tensions. One can have multiple headache types and sometimes get them all at once. Grand old party in the brain
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Darkfire

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Re: clusters AND migraines?
Reply #16 - May 8^th, 2012 at 4:16am

E-Double wrote on May 7^th, 2012 at 10:34pm:

Chronic clusters, migraine, idiopathic stabbing HA, a variant of that and good old fashioned tensions.

One can have multiple headache types and sometimes get them all at once.

Grand old party in the brain

Yah I pretty much feel like someone had a party with my brain except forgot to feed my mouth the booze. Holy hell ...least I got to sleep on and off yesterday. The headache I have right now I don't even know what it is.

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Re: clusters AND migraines?
Reply #17 - May 9^th, 2012 at 3:31pm

I've had migraines since I was a teenager. They were more of a nuisance than anything else. They are for sure painful and make me sick to my stomach.

I started getting clusters about 20 years ago. After about 4 tears I went chronic. If I had a bad migraine and was resting in the most comfortable position I could find and got hit with a cluster I would throw up from the nausea I had with the migraine when the intense pain from the cluster got bad enough. Not being able to hold still during the cluster made my migraine feel worse until the cluster got really bad (kip 8) it didn't matter whatever I had it just hurt more than I could stand. It was and sometimes still is very very miserable and exhausting -- MikeS

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Tara Ann CH.com Alumnus Offline It's always darkest before the dawn. Posts: 2719 North Carolina, USA Gender:	Re: clusters AND migraines? Reply #18 - May 12^th, 2012 at 12:27pm E-Double wrote on May 7^th, 2012 at 10:34pm: Chronic clusters, migraine, idiopathic stabbing HA, a variant of that and good old fashioned tensions. One can have multiple headache types and sometimes get them all at once. Grand old party in the brain Yep fun stuff
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