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Topic: Just Now Getting Treatment (Read 352 times) |
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KFort
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Just Now Getting Treatment
« on: Feb 3rd, 2005, 10:46pm » |
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I have had clusters for years, usually only one or two episodes a year, with 4-5 days per episode. Always just gutted them out in the past.
My latest is over. But now I realize I should try to plan some treatment options for when the next barrage comes. My sister is a pharmacist and says there is no reason to suffer needlessly.
I can't seem to get on track with a good doc. I go to my primary care physician, who is a DO not an MD, and he spends on 5 minutes with me. Prescribes me Darvocet! I bet that will work about as well as cotton candy!!
I ask about trying oxygen but he says it's too dangerous to keep around the house. Said if I am in the middle of an attack to come into his office and he can give me O2 but...usually I get hit in the middle of the night when the doc is getting a good night's rest.
There are no headache specialists in my town. I tried getting an appt. with a neuro but they said I had to be referred by a primary care doc.
How do I get linked up with a good doc???? Do most headache specialists require a referral? I have great medical insurance (BC/BS) and can use any participating doctor who will see me. BC/BS isn't the problem, it is the specialists who are requiring the referral.
THANKS.
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vig
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Re: Just Now Getting Treatment
« Reply #1 on: Feb 3rd, 2005, 11:07pm » |
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mmmm cotton candy...
you're right though, it doesn't work.
let's see if we can't find some other Indiana people here with docs to recommend...
Unsolved?
Yikes?
anybody?
and yes, most specialists want a referral, well, they don't, but the insurance companies do....
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Mr. Happy
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Re: Just Now Getting Treatment
« Reply #2 on: Feb 3rd, 2005, 11:32pm » |
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on Feb 3rd, 2005, 10:46pm, KFort wrote:| I have had clusters for years, usually only one or two episodes a year, with 4-5 days per episode. Always just gutted them out in the past. |
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Things will go much better, now that you've come out of the closet. With a pharmacist as a sister, you just got 5 bonus points! There are LOTS of ways to get thru this, and many of the answers can be found here. The fact that you have 4-5 day episodes leans heavily in your favor.
We have agents in Indiana. Vig is their contact. Work thru him.
There are ways around the O2 thing, but it's really Bad Form of your doc to pull the Dangerous Product as an O2 cop out. I have to pay for my O2, and it's amazing how receptive my doc was to O2 if he didn't have to do 42 hoop jumps thru the insurance circle.
Take as directed,
RJ
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Jeepgun
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Re: Just Now Getting Treatment
« Reply #3 on: Feb 3rd, 2005, 11:47pm » |
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Right on, Vig and RJ.
KFort, I hope you are able to find a capable physician and some pain-relief soon. Keep on hangin' in there. There IS a way to have this disorder/disease/malfunction and still lead a normal life. You've come to the right place and you're going to be okay.
Welcome to the board.
-Frank
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RichardN
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Re: Just Now Getting Treatment
« Reply #4 on: Feb 4th, 2005, 12:34am » |
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Hi KFort
Last night he woke me three times . . Kip 3-4, I am using 6mg Melatonin, a wake groggy so it takes a minute to ask my self "why am I awake?" . . . oh yeah . . reach for the 02, sit up on the side of the bed for a few minutes, long deep breaths (usually 10-12lpm), and back to sleep. . ."come into his office". . . .jeez, he obviously doesn't know what you're dealing with.
Print the 02 info to the left and take it to your doc. Also I believe the Mayo Clinic site recomends high volumn 02 to abort clusters. Can anyone post that link please? . . . I need a copy also. Copy that and take to your doctor. Let him know you are aware of the safety precautions, but are also aware of the high percentage of effectiveness of 02.
Must be used early-on as possible in the attack. He's tugging at my eye right now, but my tank is about six feet away . . . . if he persists, he's dead in a few minutes.
Yes, there were occasions when he had firm hold and the 02 did not work . . . especially when I first started using (had small regulator w/canula), but still was sooo much better than without. Now, the "dance" is the exception, not the rule . . . . I don't fear sleep!
Be safe, GET OXYGEN!
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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ArCane
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Re: Just Now Getting Treatment
« Reply #5 on: Feb 4th, 2005, 12:49am » |
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Welcome KFort. Most neuros require a referral. Last time (and only time) I needed a referral everyone seemed like they didnt want to help me. It took 3 months to finally see a neuro. At one point a told the secretary on the phone, "Let my stab an ice pick in your fucking head and than Ill need a referral to help you stop the bleeding." I was in a cycle and stressed at the time. Hmm... maybe thats why it took 3 months  . All kidding aside, even with the long wait Im still glad I went. With a good neuro you can turm CH from the ruler of your life to just a nuisance. Good luck. PF vibes heading your way.
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BlueMeanie
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Re: Just Now Getting Treatment
« Reply #6 on: Feb 4th, 2005, 2:21am » |
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on Feb 3rd, 2005, 10:46pm, KFort wrote:I have had clusters for years, usually only one or two episodes a year, with 4-5 days per episode. Always just gutted them out in the past. My latest is over. But now I realize I should try to plan some treatment options for when the next barrage comes. My sister is a pharmacist and says there is no reason to suffer needlessly. I can't seem to get on track with a good doc. I go to my primary care physician, who is a DO not an MD, and he spends on 5 minutes with me. Prescribes me Darvocet! I bet that will work about as well as cotton candy!! I ask about trying oxygen but he says it's too dangerous to keep around the house. Said if I am in the middle of an attack to come into his office and he can give me O2 but...usually I get hit in the middle of the night when the doc is getting a good night's rest. There are no headache specialists in my town. I tried getting an appt. with a neuro but they said I had to be referred by a primary care doc.
How do I get linked up with a good doc???? Do most headache specialists require a referral? I have great medical insurance (BC/BS) and can use any participating doctor who will see me. BC/BS isn't the problem, it is the specialists who are requiring the referral.
THANKS. |
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Welcome KFort,
Are you saying your cycle only last 4-5 days. When did your latest cycle start ? Have you been diagnosed with CH's ?
Sounds like with your insurance you should be able to see an MD easily. He can refer you to a Neuro. It's harder to get the O2 without going through a neuro. The excuse he gave was just a liability copout.IMHO
Good luck.
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don
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Re: Just Now Getting Treatment
« Reply #7 on: Feb 4th, 2005, 6:59am » |
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Indiana
Larry Salberg
Merrillville
Robert Alonso
Indianapolis
Dr. Joseph Seipel
New Albany
Dr. Larry Salberg
Merrillville
Bette Maybury
Indianapolis
K Hanlon
Hammond
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Bob_Johnson
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Re: Just Now Getting Treatment
« Reply #8 on: Feb 4th, 2005, 10:00am » |
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Large numbers of us live in areas where we don't have access to headache specialists. I'd be cautious about assuming that all DO are not competent cf. MD: we surely see enough complaints here about MDs--and this includes neurologists!
What is possible is to seek for an doc who is willing to work with you, to learn with you, in treating your clusters. With this kind of doc you can bring medical literature so that resources he understands/respects can guide his treatments. This is why I keep pushing these books---
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
In addition, explore this site and print out this long article to share with the doc:
http://www.headachedrugs.com/pdf/HA2005.pdf
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It is possible to find such people! I'm getting ready to move to another state and received a letter from my primary care doc in which he said: Thanks for bringing in such good material and I learned a lot from you.
You can imagine how beneficial it is to find someone with this open and accepting attitude....
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Bob Johnson
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KFort
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Re: Just Now Getting Treatment
« Reply #9 on: Feb 4th, 2005, 9:22pm » |
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Thanks for the good advice
In answer to Bluemeanie, I have never been formally diagnosed. Fortunately, my HA last only about a week, and then go away for many months. My last attack that I have documented in my journal was May 2003, which is just a little less than two years ago. That is one of the longest lapses I can recall. However, since I don't deal with them on a continual basis it seems as though I never get a proper medical evaluation. My interest fades after the attack subsides.
I am 100% sure though that clusters are what I have. I have done a lot of reading on the internet and my symptoms correlate 100% with the classic cluster symptoms. The sharp pain behind the eye, the nasal discharge, the droopy eyelid, the timing starting a few hours after I fall asleep, upset stomach when they kip out around 8, etc.
I have had them since the 1980's.
This week when they were at their worst, my sleep cycle got so messed up that they were climaxing during the day instead of at night, and I had a headbanger at work that was so bad that I was throwing up out the car window when I drove home sick. I am surprised I didn't get pulled over for driving under the influence!
I'm going to hunt down a good doctor who knows their stuff and will prescribe me O2. I think this is the place to start. Or maybe I'll just befriend some smoker who has emphysema and borrow their tank when I need it.
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Mr. Happy
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Re: Just Now Getting Treatment
« Reply #10 on: Feb 5th, 2005, 12:19am » |
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on Feb 4th, 2005, 10:00am, Bob_Johnson wrote:| What is possible is to seek for an doc who is willing to work with you, to learn with you, in treating your clusters. With this kind of doc you can bring medical literature so that resources he understands/respects can guide his treatments. |
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Take those words to heart. Find a doc to work with. You're _obviously_ going to be at this for a long time.
on Feb 4th, 2005, 10:00am, Bob_Johnson wrote:| This is why I keep pushing these books---HANDBOOK OF HEADACHE MANAGEMENT, MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS |
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Oh Bob. Books and your Zyprexa. You old romantic, you.
RJ
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vig
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Re: Just Now Getting Treatment
« Reply #11 on: Feb 5th, 2005, 12:34am » |
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Thanks Don, but where are all the Hoosiers?
Jackie?
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never, Never, NEVER quit. -Winston Churchill
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