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My husband may have ch? (Read 1023 times)
takingcareofhubby
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My husband may have ch?
Nov 24th, 2013 at 11:36am
 
My husband has been suffering for 3 weeks now from the worst headaches in his life.  His first really bad one started with a tingling sensations in the limbs, and within 10 minutes the headache started.  I made him go to urgent care last week and it was diagnosed as a stress headache and possible sinus infection.  He was given an antibiotic, prednisone, and fioricet (which he choose not to have filled).  Within a day he felt better, then he had good days where he was able to perform as usual.  But then it got bad again and I filled the fioricet prescription.  It would give him relief of 3 hours but then it would start getting bad again. I started researching and happened to find information on ch.  Here is why I think it may be ch:

-He improved with prednisone, but got worse again after it was out of his system.  Now I see prednisone is a drug prescribed sometimes to help ch
-Pain is on one side of his head localized around his eye area
-Eye on that side of head is swollen and watering
-Same eyelid drooping (this went away when he was on prednisone)
-He can't sit still when it is really bad
-He says he fills like bashing his head or ripping his eye out
-Headaches come in "waves" and get bad really fast
-Headaches wake him up at night
-No sensitivity to light, but some to sound

Here is the kicker...he is in his late 50s and has never had ch  before.  I know that is unusual, but I think I can explain why.  He says he has had headaches before, when he was in his 20-30s.  For over 20 years he has been on antidepressants and can't remember having episodes during that time.  What he did have was an occasional mild attack when he would overdo lifting weights.  But it was always excruciating pain that seemed to radiate from the same eye, would get a little better with Ibuprofen but would just eventually go away. 

We have been in the process of moving to a different state and his citalopram (generic Celexa) prescription has been running out so he wasn't taking more than 1 pill a week until he could find a doctor in our new state.  And of course moving he spent a lot of time lifting things.  At first he dismissed the pain as a the same type as after he over did it lifting weights, but it continued day after day, coming in bouts--it would come on suddenly, be excruciating, then go away to where he could continue as usual until the next one came on.  It looks like some people have been able to find relief from taking Celexa or other antidepressants, so I am wondering if he hasn't had any ch before now because he has been on antidepressants and they have kept ch away.

It has been a miserable weekend, and we are heading back to urgent care again tomorrow a.m.   Is there any alternative cause that I could be overlooking (doctor did vision and neurological testing last week and showed nothing that concerned him)?  As sufferers do you think his symptoms fit ch?   Is there anything special we need to tell or ask the doctor?  Should we bring up ch or see if the doctor comes to that conclusion on their own?  Any advice is greatly appreciated!
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Guiseppi
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Re: My husband may have ch?
Reply #1 - Nov 24th, 2013 at 12:41pm
 
Several of your theories make sense. Many meds that we use for CH, Topomax, Lithium, Verapamil, were discovered accidentally because when people were on them for unrelated issues, their CH stopped. The pain and side effects you list do fit CH, especially when I hear you say the doctors diagnoses Stress with a Sinus Infection. Extremely common mis-diagnosis of CH. What you should start doing NOW!

Get a referral to a headache specialist neurologist. GP's and even most garden variety neuros just don't have the knowledge base or the experience to diagnose and treat complex headache disorders. There are several rare but serious maladies you want to eliminate to make sure you're not dealing with anything more sinister, and masking the pain of THAT by assuming it is CH. As you've already seen, urgent care is worthless as they just want you in and out so you get narcotic based pain meds and bad diagnosis info.

Start a headache diary, the more detailed the better. When the attack starts how fast the pain builds, how high the pain builds where the pain is located, what kind of pain, how long it stays at peak pain, how fast it goes away. Any side symptoms, the eyes, runny nose, the tingling you described, be as specific and detailed as possible as the final diagnosis will be in the details.

Until you can get to a Headache Specialist Neuro, stock up on energy drinks. I prefer sugar free Red Bull as it's the least offensive of the drinks I tried! Any containing the combo of caffeine and taurine will work, chug it down at the first sign of an attack. Many can abort or at least really reduce the intensity of an attack using these. Avoid alcohol, a very common trigger for many CH'ers.

If it does turn out to be CH it's not the end of the world. As you'll see by spending any time on this site there are numerous effective treatments to help him get back to a normal life. Wishing you speed on your diagnostic journey and some pain free time for the hubby soon.

Joe
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Mike NZ
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Re: My husband may have ch?
Reply #2 - Nov 24th, 2013 at 2:01pm
 
Hi and welcome

Joe has given you some great advice, especially around getting to see a headache specialist. Whilst the symptoms as described sound very much like those associated with CH there are multiple other things that can result in the same symptoms, so it is essential for someone with the skills and experience to be able to give an accurate diagnosis so he can get the correct treatment for whatever is causing this.

Anti-depressents have been used as a CH preventive, like nortriptyline and amitriptyline, so if it is CH then that may have explained the lack of the CHs.

Let us know how you get on. If it is CH then you've found a great place where people really do understand it and can give great advice and support.
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Bob Johnson
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Re: My husband may have ch?
Reply #3 - Nov 24th, 2013 at 2:09pm
 
Onset of cluster at 50 is uncommon but many of the symptoms you list characteristic of cluster. (See the cluster quiz, left of this page.)

Saying that, it's a complex disorder to treat, especially since there are a number of disordes which mimic Cluster but which are not headache disorders. (And this becomes a greater potential with the age factor.

Once you get settled, if at all possible, would encourage finding a headache specialist. It's quite remarkable how few doctors, including neurolotgists, have training/skill in treating headache and you will want a shap doc to work with you for years to come. (IF Cluster, not a condition which is cured--only controlled.)

For now, avoid pain meds. Don't work with Cluster and too much use can increase attacks & pain. Would be well to start learning while in the process of relocating. (Yes!, it will be hard to do both but....)
===
Explore for books and articles:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. Two books, one free, available as an e-book; second aimed at professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.
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When you get settled:
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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If you have a number of weeks before your move and have a local headache doc, would consider getting seeking a bridge treatment program to carry you to your new location.

ASSUMING it's Cluster, print out the PDf file, below. Will introduce you to the major meds used and it's a nice tool to guide discussions with any doc you see.
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« Last Edit: Nov 24th, 2013 at 2:13pm by Bob Johnson »  
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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