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Topic: So many questions (Read 655 times) |
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beachmusic
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Well yes, I am new and don't know where to begin. I had my first round with what I guess were clusters back in 03. Doctor never confirmed but always in left eye etc. oddly enough at the same time my right eye started to droop  and has continued ever since. I have thyroid eye disease also. So who knows??? Had an opthamolgist mention he thought there may be some horners syndrome involved but he is the only one to ever see that. Now 4 years later, my right eye is still drooping severly and I was awakend after being asleep for about an hour in severe pain in my left eye again with all the symptoms everyone here has mentioned. This was Jan 7 and since then I have had at best 3 days off. I usually only get hit once a day and not always at night anymore. It seems to come between 6pm and 9 pm and almost always a kip 8 (and dear lord don't let me take a nap). I also have terrible insomnia due to this and wake every night around 1am. My nerologist who was wonderful the first go round now cannot see me until March 5th but his perky nurse practioner has seen me twice. She now has me on Topamax 125 mg. Depakote 500mg. I did the prednisone taper and also I am day 5 of the DHE45 nasal spray which seems to help tremendously. I now just feel like I have a mild migraine all day and night and cannot sleep or function. Not to mention I am fearful of what will happen tomorrow when I cannot take the D
HE anymore. Also waiting for the past 9 days to hear back on O2 approval. I take blood pressure meds which she didn't seem to know or care about but she will not return any phone callls so what the heck.
Anyone else have such trouble sleeping at night and then staying awake in the day?
BTW I also have fibromyalgia which I have taken klonipin for years at bedtime for and feel certain that adds to the grogginess! You would think all these meds would put a horse down! Ok and shoot me now~~~~~ I know that smoking is the absolute worst thing you can do but I cannot seem to quit, although I have cut down from a 1/2 pack a day to 3-4 ciggs a day. I want my life back!!!!! Guess I can only blame myself...... 
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Bob_Johnson
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Re: So many questions
« Reply #1 on: Feb 26th, 2008, 11:27am » |
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Since you have felt good about the neurologist so far, in fairness, I guess sticking thru the next appt would be wise. I'm not comfortable about the lack of responsiveness to someone with CH: it at least suggests a certain lack of awareness of how quick interventions are the watch word.
If you decide that a change is in order:
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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Do some reading while waiting for the next visit.
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.plainboard.com/ch/chtherapy.pdf
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Bob Johnson
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beachmusic
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Thanks! I will read read read. Perhaps one eyed but I will do it. Also I appreciate the info on links for docs.
One more interesting tidbit I left out. Last week my husband camped out with me at my primary care doctors office. I was in tears and we were begging for help, referrals anything. She basically said there was nothing she could do and said she thought I should find a new primary care. At the end of the visit she said I should experiment with as many neuros as possible, that it may take time. She called today 8 days later and had an appt for me with a guy for Friday. Hurray!!!! Well I googled the guy and guess what he is on probation for drug abuse with big big charges against him(which he has admitted to). Has no priviliges at any hospitals and cannot precribe any meds. What a joke, and to think she fired me as a patient. I freaking give up!! 
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Guiseppi
CH.com Alumnus
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Re: So many questions
« Reply #3 on: Feb 26th, 2008, 11:55am » |
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I know that last line was a frustrated response....but of course you cannot give up. You are all you have!
Search the link Bob gave you and keep trying to find that neuro that "understands and gives a crap!" They are out there, it just takes a while. Until then....
Keep some energy drinks on hand, Rock Star, Monster, any containing the combo of caffeine and taurine, many can get relief by slamming one of those at the start of an attack.
You may want to consider taking melatonin before you go to sleep at night. It's available over the counter at vitamin and health food stores. Taken just before going to bed it can prevent the night time terrors for many. Help you get a little sleep to better prepare you to do battle.
And as far as smoking....I never have, but am amazed at the high percentage of smokers among CH'ers! I feel like such a minority because I DO NOT smoke!!!
Hang in there and good luck.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Stinger
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I love YaBB 1G - SP1!
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Re: So many questions
« Reply #4 on: Feb 26th, 2008, 12:08pm » |
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The combination Guiseppi mentioned has helped me tremendously. Give those a try.
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beachmusic
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I bought some melatonin the other day. Do you know of any reason that it would interfere with all the other meds I menitoned previously. Also take Klonipin. Thanks so much...
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thebbz
CH.com Alumnus
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Ow,Ow,Ow
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Re: So many questions
« Reply #6 on: Feb 26th, 2008, 9:38pm » |
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Welcome and hang in there.
all the best
02,02,02, nine days is too long. Kick somebody's ass
thebb
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It wasn't me I didn't do it
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Linda_Howell
CH.com Alumnus
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Hearing is one thing. Listening is another.
  
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Re: So many questions
« Reply #7 on: Feb 26th, 2008, 11:12pm » |
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Beachmusic,
I sure would like to call you another name...like make one up if you feel like you cannot give us at least a first name...
It sounds to me like you are having a really rough time that is unnecessary. If I were you...I'd tell them all to go to hell and start over. They are wasting your precious time and money.
There are several people in your neck of the woods and maybe they can give you a reccomendation for a real doctor.
The sooner you read around here and familiarize yourself with this condition, the better. Knowledge is power...and if you wait til your Dr. gains enough knowledge, you'll be really old. Most Dr.s who graduate from med school get exactly 5 hours training in headaches. ALL kinds of headaches.
It is up to you now to be your own best advocate.
Here are some sufferer recommended . Dr.s in Va.
Quote:Virginia
Nurang Gill
Woodbridge
Dr. Steven D. Nack
Blacksburg
Stuart Stark
Alexandria
Dr. Alan Fenderson
Virginia Beach |
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You live in Midlothian, Va. So I am putting out a call for anyone here who knows where that is and if you can help her with a Dr.
Hang in there (enter name) we will do whatever we can to help you. Maybe that is only to hold your hand or give you a call, along with a pep talk. I ahve also been known to give a few a swift kick in the pants too.
We're here for ya, whatever the need. Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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beachmusic
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Linda, My real name is Mary Ann. But you can call me anything.... I appreciate all the help and kind words. I actuallly screwed up my dates. My appt. with my neuro isn't until late March the MRI and MRA is is March 5.
If anyone knows of a Neuro with headache specialty in the Richmond or Midlothian area I would be very thankful.
I started the melatonin last night (9mg) and tried benedryl) yesterday I do believe I felt some relief. Today is my last day with the migranal spray and still no word on the O2.
My husband is calling my pcp back to let them know why we will not be keeping appt with the new neuro she refferred us to and hoping that she would like a copy of the legal documents faxed to her  . Hopefully I will have a new pcp soon, but at this point I still need her for emergencies
Here is to a better day to all. Mary Ann
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