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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> sarcoid & CH, family dr.s vs. neurologist
        
(Message started by: Portland_kait on Oct 7^th, 2007, 3:28pm)

Title: sarcoid & CH, family dr.s vs. neurologist
Post by Portland_kait on Oct 7^th, 2007, 3:28pm

Hi I have sarcodosis and ch. I was wondering, they talk about an increase in calcium production in CH sufferers. I was wondering if the two might be related as with Sarcoid your body can produces too much calcium. A lot of people never know they have sarcoid until they get a chest x-ray.
Also, Do people here forgo their family DR. and see a neurologist?
Thank you,
K

Title: Re: sarcoid & CH, family dr.s vs. neurologist
Post by Bob_Johnson on Oct 7^th, 2007, 7:41pm

I've not seen any mention of calcium in relation to CH.

What is essential in the doc is NOT the speciality but someone with experience, willingness to work with you, and learn from us as we feed him information about latest treatments, etc.

Sources of docs:

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. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; 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.

Title: Re: sarcoid & CH, family dr.s vs. neurologist
Post by mcf69 on Oct 7^th, 2007, 10:20pm

Hi Kait,

I haven't heard anything, or read any research linking CH to increased calcium production. Calcium channel-blockers such as Verapamil are used for CH prophylaxis, they work because the med acts on the blood vessles in the brain causing them to narrow (vasoconstrict). Is this what you could be thinking of in relation to calcium/CH? I am familiar with the problems of hypercalcemia in sarc patients, it remains one of the enduring mysteries of the illness. I'm curious, does your sarc affect your brain or nerves?

Ben

Title: Re: sarcoid & CH, family dr.s vs. neurologist
Post by MJ on Oct 8^th, 2007, 12:51am

on 10/07/07 at 15:28:48, Portland_kait wrote:

Also, Do people here forgo their family DR. and see a neurologist?
Thank you,
K

Hi kait. No its not necessary to forgo one doc to see another. If you have a family doc willing to understand CH and work with you, then you are many steps ahead in my opinion. Even better if he understands any other conditions one may have. Your comfort and faith in the doc is whats important and many neuros are no more schooled in CH than a family doc.

seconding Bobs opinion.

Title: Re: sarcoid & CH, family dr.s vs. neurologist
Post by BMoneeTheMoneeMan on Oct 8^th, 2007, 12:59am

It is typical to start with your regular doc and then he or she might refer you to a neuro to get help with the headaches. It is totally hit or miss, your doc might know much more about CH than the neuro.

Title: Re: sarcoid & CH, family dr.s vs. neurologist
Post by Portland_kait on Oct 8^th, 2007, 2:25am

This seems weird but I read some where that clusters can be caused by calcium deposits forming in the brain. Because Ihave sarcoid I wondered if there was a correlation.

I have pulmonary sarcoid. I hate bugging my Dr. about it because it is a strange rare disease, possibly non problematic or very. Combined with having clusters I feel like I come off as one of "those problem woman". I just know Dr.s look at you like "what else can I really do?"when I need more information or want x-rays.
I don't know now to blame symptoms on sarcoid (tired, forgetful, drained) or the meds they give you to treat clusters. I mean, Topamax can make you feel so stupid you think "my god I must have a brain tumor!" I found this site because want to get of Topamax and Migrainal which does nothing for me.