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New to Clusters (Read 1937 times)
Tona
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Dahlonega, GA, USA
New to Clusters
Jan 17th, 2016 at 2:26pm
 
My husband has been having progressively worse headaches since November.  Because he has neck issues, we thought it probably had to do with arthritic changes in his neck.   His pain management doctor tried two different procedures which did nothing for the headaches.   He just started getting full on nauseated this week with vomiting.   The pain has gotten so bad that nothing is working.  We were finally referred to a neurologist who suspects cluster headaches but my husband has a family history of aneurysm so we are checking that first before he can even start any medications for the clusters.   I've done a lot of reading trying to see which makes more sense: cluster of aneurysm.   From what I can see at this moment it's a coin toss but I wanted to ask others who have experience with cluster headaches.  His right eye drops and basically the entire right side of his face is droopy.  He also complains of numbness and a 'pins and needles' sensation on his face as well ( all one sided where the pain is).   He is nauseated now without even having a headache in the moment.   He is so fatigued he can barely function enough to walk from our bedroom to the living room.   Does this make sense to anyone else?
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AussieBrian
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CH - It's all in your
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Posts: 3851
Cairns, Qld, Australia
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Re: New to Clusters
Reply #1 - Jan 17th, 2016 at 3:15pm
 
G'day Tona, and welcome. Top left of your screen is a button for Cluster Quiz which might be worth a look.

Let us know how you get on with it.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Bob Johnson
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Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: New to Clusters
Reply #2 - Jan 17th, 2016 at 3:38pm
 
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Cluster is a more complex disorder than many folks appreciate. The two major issues: finding a doc who has the sklll to diagnosis accurately. Here, there are many docs who  lack both training and expierience, so the first step is fincing a skilled doc.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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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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.
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Even for sharp docs, there are a suprisingly number of disodrders which mimic Cluster but which are not headache disorders. So, both  the need for experience doc and patience while the disagnostic exploration takes place.

Avoid the encouragement to start using this and that treatment before you have a solid Dx. Justs confuses the picsture.

Cluster is a painful disorder but one which is not a serious threat. You may expect a high level of relief and control once a good diagnosis is on the table.

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Bob Johnson
 
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Tona
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Dahlonega, GA, USA
Re: New to Clusters
Reply #3 - Jan 17th, 2016 at 5:05pm
 
I took the Cluster Quiz and his headaches and symptoms are kind of half and half.
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Hoppy
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Perth WA
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Re: New to Clusters
Reply #4 - Jan 17th, 2016 at 6:49pm
 
Hi Tona,
Maybe talk this over with your neuro. Hemicrania Continua, Indomethacin is the preferred treatment here.

Hoppy.
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Mike NZ
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Re: New to Clusters
Reply #5 - Jan 19th, 2016 at 1:12am
 
Hi Tona

Whilst we can recognize some of the symptoms you describe, we can not possibly confirm a diagnosis. This needs a headache specialist who has the skills and experience in dealing with complex headache types.

It is also possible that your husband may be having more than one medical issue / headache type active at once which is what could be the cause of the multiple symptoms, so it could be CH and aneurysm (or similar)

It's possible you may need to work with more than one doctor to get the diagnosis and treatment plan sorted.
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Twisted Image
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Netherlands / Holland
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Re: New to Clusters
Reply #6 - Jan 19th, 2016 at 12:53pm
 
Is he also scheduled for an MRI scan yet? If not very important to have one ASAP just to rule out some possible causes.
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Als het niet gaat zoals het moet, moet het maar zoals het gaat.
 
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Tona
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Dahlonega, GA, USA
Re: New to Clusters
Reply #7 - Jan 19th, 2016 at 6:05pm
 
He is scheduled for a MRI with and without contrast on January 26.  For now the plan is topamax, a steroid pack and Imitrex auto injectors.
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Bob Johnson
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Kennett Square, PA (USA)
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Re: New to Clusters
Reply #8 - Jan 19th, 2016 at 7:58pm
 
Topomax has received such boad rejection from folks here that I'd suggest asking the doc to justify using it.

There are sufficient other useful meds without the side effects of Topo. See,in box box, below.

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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
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Tona
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Posts: 11
Dahlonega, GA, USA
Re: New to Clusters
Reply #9 - Jan 20th, 2016 at 6:57am
 
Three years ago he had headaches and after MRIs and CTs, his doctors thought it was coming from the severe arthritis in his neck.   They gave him gabapentin and some opioid pain medications.  He underwent a cervical epidural at that time which paralyzed him for 6 hours so we were hesitant to try that again.  When these headaches began again in November, his pain doctor tried trigger point in his trapezius muscles because he thought it was tension caused by his neck.  No help.  We broke down and got him another cervical epidural. No help.  In fact the headaches got worse.  Pain doctor tried an occipital nerve block.  That dulled the pain for one night only.  So now he is on both gabapentin and topamax.   Since the doctor cleared him to take the Imitrex injection, he took one last night at headache onset.  I don't know whether the steroid pack helped or the topamax but he has had less headaches over the last three days.   The Imitrex worked on last night's headache.  There are just a lot of things here which don't make sense to me.  Looking at his symptoms, clusters are a likely diagnosis but with his history, I sometimes think the doctors aren't digging deep enough into this.  All I know is he and I are both relieved that he's at least gotten some relief from the excruciating headaches for now.
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