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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New Memeber
        
(Message started by: angelicbear on Oct 3^rd, 2007, 1:04pm)

Title: New Memeber
Post by angelicbear on Oct 3^rd, 2007, 1:04pm

I stumbled upon this site by doing a search on cluster headaches. I've been suffering temple headaches for almost a year now. I've been seeing doctors all all types. They run a test, it comes back normal and they say, "see you in a few months". I read some of the articles that people on here have written, and I can relate to them. I'm not 100% sure this is what I have. My doctors all say the same thing: migraines caused by an undiagnosed neurological disease. There is more than one thing going on with me. I get headaches in my temples only. It switches sides sometimes even during the headaches. I get ping-ponging sometimes so bad that it makes me dizzy. I don't lose my appetite, nor do I get all this energy that others talk about. I need to lay down when I get them. Noise don't bother me, but I am super sensitive to light. Even at night sitting around a bon-fire, I have to wear sunglasses because my eyes don't dilate or undialate quick enough for me to see well. I see double at time, blurry vision, just all kinds of fun. I have muscle weaknesses, vertigo, memory loss, speech difficulty, loss of thinking process, and a few other things I can't even think of right now. I get anywhere from 4 to 8 headaches in a day. I'm on Topomax 50mg in the morning, and Amitriptyline 50mg at night. For pain pills, I go back and forth between Darvecets, Floricets, and Vicitin 10/650's. There are times, where I have to take all 3 to just get the headache to where I can stand it. When they ping-pong, I've cried my eyes out, while pulling my hair at my temples. The pain is just horrible. I have social security telling me it can't be that bad and I should be working, and even my own mom says the same thing. I just wish I could give them one of my headaches for just 5 minutes, so they could understand what it's like.
I'm looking forward to sharing what I'm going through, and seeing what everyone else is going through too. It's nice to know I'm not alone in the world. My family doctor just lost his mother, so I haven't been able to talk to him and won't be able to until probably next week, so I've just been suffering. I'm not sure if I have cluster headaches or not, but it sure is looking like it.
Well enough rambling from me for now.
Thanks for listening!
Angelicbear

Title: Re: New Memeber
Post by thebbz on Oct 3^rd, 2007, 1:14pm

Hello,
Did you take the clusterquiz on the left? What were the results?
Doctors should diagnose, not say you have an undiagnosed disorder causing further complications. I hate doctors. Your description indicates migraine. Get to some new doctors. I could not accept inept, incomplete health care.
all the best
thebbz
Edit: Pain killers do not work on clusterheadache. They often will trigger a CH.

Title: Re: New Memeber
Post by Rosybabe on Oct 5^th, 2007, 10:19pm

on 10/03/07 at 13:04:55, angelicbear wrote:

. There is more than one thing going on with me. I get headaches in my temples only. It switches sides sometimes even during the headaches. I get ping-ponging sometimes so bad that it makes me dizzy. I don't lose my appetite, nor do I get all this energy that others talk about. I need to lay down when I get them. Noise don't bother me, but I am super sensitive to light.

These are typical migraine symptoms...

. I have muscle weaknesses, vertigo, memory loss, speech difficulty, loss of thinking process, and a few other things I can't even think of right now. I get anywhere from 4 to 8 headaches in a day. I'm on Topomax 50mg in the morning, and Amitriptyline 50mg at night.

These symptoms are probably a side effect of Topamax...
Angelicbear

I really hope you get to see a good Doctor, no one deserves to be in pain and not having a decent treatment.

Wishing you lots and lots of pain free time.

Rosy.

Title: Re: New Memeber
Post by Linda_Howell on Oct 6^th, 2007, 12:01am

Quote:

I'm on Topomax 50mg in the morning, and Amitriptyline 50mg at night. For pain pills, I go back and forth between Darvecets, Floricets, and Vicitin 10/650's.

Good Lord!!!!!!!!!!!!!!! You aren't angelic bear...you are LOADED for bear. Exactly what kind of a Physician prescribed all this for you? I'd really like to know so I can report this person to the AMA as well as the proper authorities.

o.k. I waited with this thread in front of me so I could calm down and I am somewhat calm now.. :(

I don't know if you have Migraines (I suspect you do) or Cluster headaches, but I certainly wish that you will see another doctor, and before you do, please read a lot here. Educate yourself from all of our experiences, after all that is why you came here right?

Linda, who thought she'd calmed down, but now is off to abuse Chuck if she see's him here. Just to get the anger out of my system ya know? ;;D ;;D ;;D

Title: Re: New Memeber
Post by Ctech on Oct 6^th, 2007, 2:45am

Doctors suck and get paid for it :-/ sounds like another profession ;;D

Title: Re: New Memeber
Post by thanksdad on Oct 6^th, 2007, 10:41am

Hello,

I am new here too. The doctors are well... kinda stupid, get a new one, one who listens. Have you had all the tests? MRI? CT Scan? I mean you should really have these important tests to rule out any "undiagnosed nuro problems". I know how frusterating it is. I have been trying for 8 years to prove I don't have cluster, It didn't make the pain go away.

Any narcotics will make the headache worse when the wear off. It is possible to have migrane and cluster.

I take topomax and I have the same side effects. muscle weakness, slurred speach, lately I have a horrible time spelling. lol

You need to find the right doctor and get a diagnosis. Remember your doctor is supposed to work for you and you should feel comfortable with him/her.

Good luck. Remember, you are your only advocate.
sheila

Title: Re: New Memeber
Post by Bob_Johnson on Oct 6^th, 2007, 11:42am

So many folks here have had unhappy experiences with docs who have little training/skill/interest in complex headache disorders that it's very clear that finding the right person is critical.
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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.
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Explore the buttons on the left, work thru the many articles on the OUCH site, then get back as your insight and questions develop.