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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> I need a new doctor
        
(Message started by: Rich C on May 1^st, 2003, 5:03pm)

Title: I need a new doctor
Post by Rich C on May 1^st, 2003, 5:03pm

I found this site while searching around for a new neuro whom I'm pissed at. I've been in a cycle since 4/12 & the only pain meds I got were 30 fiornal & 1 bottle of stadol. Meds have been gone since 4/28 & I don't see the doc until 5/2. He outright shut me off for pain meds, & it's not the first time. Have had CH since 1980, found this doc around 1983. He loves to play with preventive stuff. I'm on Sansert, Lithium, Verapimil all year. When the cycle starts (every time change) I get hit with Prednisone, sometimes Depakote & always increases in the daily meds. For years, all I got for pain was fiornal. You can really gobble them up since they are not made for serious pain. When he first introduced Stadol a few years back, it was a blessing for pain relief, but I had to make it last 15 days & there's only about 11-12 doses. It saved me from going to the ER & dealing with that trauma. Is Stadol as bad as he makes it sound? I've never experienced any drug addictions, but the doc talks of nothing but that. Probably the best cure I ever had was O2, but my insurance refuses to cover it anymore unless it's breathing trouble related. It's also kind of hard carrying that tank on your back wherever you go. My questions to anyone who may have had any similar experiences are: 1] does this course of preventative treatment sound familiar? 2] does anyone else rely on pain medication/narcotics as the sole method to kill an attack while they are waiting for the preventatives to kick in & end the cycle? 3] how do you approach an arrogant/pos doc about all these other treatment plans I'm reading on this board i.e Imitrex etc. After 23 years, I'm open to try new treatments.

p.s. I have made an appointment with a new headache doc, but they can't see me until mid July.

Sorry to ramble and thanks for listening, it helps relieve some of the tension.

Title: Re: I need a new doctor
Post by eyes_afire on May 1^st, 2003, 5:36pm

Hi Rich, sorry you're suffering, it's frustrating as hell. Truth is, most of us here have not been helped by painkillers. Painkillers are not very efficient at controlling cluster headaches and sometimes lead to a 'black hole' of tolerance. In some rare instances they may have strategic uses for truly intractable cases. Nevertheless, if your doc is not very knowledgeable or is arrogant, maybe it's time to find a new neuro. Perhaps your neuro hasn't prescribed the correct dosage or form of verapamil (i.e. regular release instead of ER or SR)? Welcome. Explore this site, there's a ton of info here. If you decide to look for a new doc, go to the OUCH website where there are recommended docs listed.

--- Steve, one of many...

Title: Re: I need a new doctor
Post by Frank on May 1^st, 2003, 8:21pm

It would seem that the course of treatment that your doctor is following is good as far as preventatives go. Verapamil and lithium are good... if the dosage is high enough. Most doctors prescribe verapamil at a low dosage (240-480mg) which is not effective for many cluster sufferers. Sansert is old a has the potential for bad side effects if taken for too long... but works for some. Prednisone works for many people... Depakote, and Topamax also work for some (bad side effects are common though).

I think the medications that you are taking for pain are the wrong stuff. Not only are Fiornal and Stadol extremely addicting (especially Stadol)... but they probably don't work fast enough to stop a cluster attack either. They may dull the pain, but not really stop it.

Has you doctor tried triptans? Like Imitrex, Zomig, Maxalt, etc? THey seem to be the most effective at stopping an attack... especially IMitrex injections.

Oxygen is also very effective... for many people is nearly as effective as Imitrex injections . But, as you mentioned... many insurance companies won't pay... unless your doctor makes it clear that the O2 is to treat cluster headaches.... not some breathing problem. Your blood oxymeter test result showing an O2 level of 95% should not even matter... you should not even be asked to take such a test. You (or your doctor) might need to dig out a couple of medical journal articles showing that O2 is recognized as a treatment clusters.

Fighting the insurance company to get O2 is easier than fighting to get them to cover Imitrex injections... so that's what I would do next if I were in your shoes.

Title: Re: I need a new doctor
Post by Bob_Johnson on May 2^nd, 2003, 6:45am

Suggest you get one of 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....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
--------------

One of the best headache doc in the U.S. has clearly said that roughly half of doctors are not up to speed on treatment of headaches. It's important, therefore, that you learn as much as you can about the latest and most effective treatments so that you can negotiate with your doc.

Before starting with a new doc, don't be shy about asking detailed questions about their experience in treating headache. Every doc can't know everything about every condition. If you have options in your area, sorting through the wheat from the chaf is critical.

Title: Re: I need a new doctor
Post by justin on May 2^nd, 2003, 2:16pm

hey,

i'm in nyc. i've seen 6 docs and the one i have now is the only one that actually listened and wanted to help and had a clue what he was talking about. the others just threw meds at me they heard worked. i don't think they had treated cluster paitents before. anyway this guy i got now in nyc is great.

dr. lawrence newman
headache institute st. lukes' roosevelt hospital
212-523-5869

good luck

Title: Re: I need a new doctor
Post by Mark C on May 2^nd, 2003, 7:29pm

OUCH (http://www.clusterheadaches.org/medications.htm)

:)

Title: Re: I need a new doctor
Post by Karla on May 2^nd, 2003, 7:35pm

I agree with everything Frank said. You need to try oxygen. The e tank is very accomodating and you can get a wheeled cart to haul it around on. You need a non breather mask and a regulator that goes up to 10-12 litters per min. Breath it for 10-15 min. It will probably abort your ha in that time period. And it is narcotic free.

Yes stadol is as bad as your dr. says. You can build a tollerance to it very fast if not careful. As often as you are using it I am amazed it is still effective for you.

Lithium and vepramil are two very sucessfull meds to take to try to prevent ch. I agree with the others your dose may not be high enough to be effective. I tried verapamil at around 900mg and lithium at 900mg. They didn't work for me but they do for most people. There are other preventatives to try besides these. Topamax 200mg-600mg. Neurontin, depakote, some different antidepressents, propranolol, procardia, etc. Check out the OUCH website you will find a list of meds there I think. If I remember corectly.

For abortives try Imitrix shot or nasal spray. They are fast acting. Otherwise try zomig, maxalt, frova, amerge, axert, migranol, etc.

You really don't need narcotics when there is so much else available. Talk to your dr. about these options and if he wont let you try some of them find a new dr. Good luck and I hope you are pain free soon.

Title: Re: I need a new doctor
Post by Frank on May 2^nd, 2003, 10:27pm

on 05/02/03 at 19:35:18, Karla wrote:

Yes stadol is as bad as your dr. says. You can build a tollerance to it very fast if not careful. As often as you are using it I am amazed it is still effective for you.

I am not sure if I had a bad reaction to Stadol NS or what. But the couple of times I tried it I felt like I had gone from "cluster hell" to something much worse. My Kip-10 turned into Kip-off the fucking scale.