Drewtn
11-04-2005, 10:29 AM
:rolleyes:
I was told yesterday by my pain doc that I was LUCKY to even be seen at the pain clinic for my headaches/migraines. I guess the rules have changed and now they don’t accept ANY headache/migraine patients. They are to be sent to a neurologist ONLY. I have had headaches and migraines every day since 11/99. (Severe car wreck) I went through 4 years with 2 different neurologists. THEY sent me to the pain clinic when they ran out of options/ideas.
He also told me that my pain meds will NEVER be increased or changed because of this new policy. I am on 100ug Duragesic and 4mg Dilaudid. HOW can you keep from getting a tolerance to them?? Is there anything I can do so it will be effective for a long time?? (It works ok for now but I don't know for how long!)
ANY IDEAS??? :confused: :confused:
I guess I should feel lucky that I was grandfathered in!!! It just amazes me how much this clinic has changed in the last two years!!! UNREAL!!
~~~
The last change they made was to NOT prescribe ANY new patients Oxycontin AND reduce the current dose and amount that was being given. You should have seen all of the increase in pain. I don't even want to THINK about the next change!! It is a big clinic too!
I was told yesterday by my pain doc that I was LUCKY to even be seen at the pain clinic for my headaches/migraines. I guess the rules have changed and now they don’t accept ANY headache/migraine patients. They are to be sent to a neurologist ONLY. I have had headaches and migraines every day since 11/99. (Severe car wreck) I went through 4 years with 2 different neurologists. THEY sent me to the pain clinic when they ran out of options/ideas.
He also told me that my pain meds will NEVER be increased or changed because of this new policy. I am on 100ug Duragesic and 4mg Dilaudid. HOW can you keep from getting a tolerance to them?? Is there anything I can do so it will be effective for a long time?? (It works ok for now but I don't know for how long!)
ANY IDEAS??? :confused: :confused:
I guess I should feel lucky that I was grandfathered in!!! It just amazes me how much this clinic has changed in the last two years!!! UNREAL!!
~~~
The last change they made was to NOT prescribe ANY new patients Oxycontin AND reduce the current dose and amount that was being given. You should have seen all of the increase in pain. I don't even want to THINK about the next change!! It is a big clinic too!
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Shoreline
11-04-2005, 04:55 PM
Hey Drew, If you can find relief using other modalities and decrease the pain and frequency of the H/A's you won't have to worry about growing tolerant. Have you tried botox, Occipital blocks, TP injections? All the latest and greatest meds now aproved for H/A's. New ones pop on the market every year.
Do they think your headaches are classic vascular migraines or a result of muscle, neck or disc injury? The pain can be just as intense as a true migraine but the treatnment can be very different if the cause isn't vascular.
You might also be able to increase the efficacy of your present meds with adjunct meds like Nemanda, Clonodine. Baclofen and a few others. IF the clinic can't offer these things, than you might want to start looking now for a clinic that can do more than prescribe opiates and doesn't have such an arbitrary policy.
It's definitely a major policy change.
Good luck, Dave
Do they think your headaches are classic vascular migraines or a result of muscle, neck or disc injury? The pain can be just as intense as a true migraine but the treatnment can be very different if the cause isn't vascular.
You might also be able to increase the efficacy of your present meds with adjunct meds like Nemanda, Clonodine. Baclofen and a few others. IF the clinic can't offer these things, than you might want to start looking now for a clinic that can do more than prescribe opiates and doesn't have such an arbitrary policy.
It's definitely a major policy change.
Good luck, Dave
StMishl
11-05-2005, 01:06 PM
Just asking if you have ever tried Topomax? WAY before my back went crazy, migraines were my pain issue, and I don't know what I would do if I had to deal with migraine PLUS my back... Topomax (an anti-epilepsy med that I take as a preventative to limit my migraines) has changed migraines from 4-6 per month (several of which would land me in the ER) to now 2 SEVERE migraines in all of last year + a few little ones... I know this doesn't "fix" the policy at the pain clinic, but maybe just a suggestion from one migraine sufferer to another ??? Best of luck!!
-Michelle
-Michelle
conductor
11-05-2005, 07:31 PM
Dear Drewtn,
This clinic sounds just awful!! I worry about rules that are across-the-board, without room for flexibility in difficult cases. FURTHERMORE...Words like "never" bother me in these types of situations. And, the idea that you were just "LUCKY" to be treated for your migraines REALLY BOTHERS ME! Get out if you can.
Can you find another clinic? Or can you find a solitary physician who is willing to work with your pain problems?
I have Lupus and the Lupus Anticoagulant and have tremendous pain that is related to it. Fortunately, my Internist (who is a D.O.) works very well with me. Now, I haven't really had much change in my pain medicine in quite a while (Duragesic, Actiq, and Dilaudid 8 mg). As well, my doctor doesn't have much faith in the two pain clinics located in our area. She has sent patients to both, and they have come back to her in tears (some of them) due to what has been done to them. Although she wasn't specific with me, she said that she wouldn't refer any of her patients to the two clinics in our area because of what she knows. She felt that these places were "danger traps"--in her words. She questioned the procedures and questioned their efficacy when the patients spent loads of money on procedures and medications only to come back in the same kind of pain she sent them there for.
Please know that I realize you may have limited options--due to insurance, due to lack of available facilities, due to financial reasons, etc. However, if you could find a sole practitioner that would help you, you might have a better chance! THIS IS JUST A SUGGESTION!
Even though butorphanol tartrate (Stadol) can work against the fentanyl in your Duragesic if used in excessive quantities--have you ever used Stadol Nasal Spray? I'm just curious. It worked on my migraines in the past!! The verapamil, Elavil, and Tegretol really combine well to do an excellent job of migraine prevention for me!
Again, I am just thinking about alternatives since your clinic situation sounds hideous to me! Please keep us up-to-date.
Sincerely,
Jon
P.S. As you probably are aware, Shoreline always has ideas worth valuable consideration--as do many other members!!
This clinic sounds just awful!! I worry about rules that are across-the-board, without room for flexibility in difficult cases. FURTHERMORE...Words like "never" bother me in these types of situations. And, the idea that you were just "LUCKY" to be treated for your migraines REALLY BOTHERS ME! Get out if you can.
Can you find another clinic? Or can you find a solitary physician who is willing to work with your pain problems?
I have Lupus and the Lupus Anticoagulant and have tremendous pain that is related to it. Fortunately, my Internist (who is a D.O.) works very well with me. Now, I haven't really had much change in my pain medicine in quite a while (Duragesic, Actiq, and Dilaudid 8 mg). As well, my doctor doesn't have much faith in the two pain clinics located in our area. She has sent patients to both, and they have come back to her in tears (some of them) due to what has been done to them. Although she wasn't specific with me, she said that she wouldn't refer any of her patients to the two clinics in our area because of what she knows. She felt that these places were "danger traps"--in her words. She questioned the procedures and questioned their efficacy when the patients spent loads of money on procedures and medications only to come back in the same kind of pain she sent them there for.
Please know that I realize you may have limited options--due to insurance, due to lack of available facilities, due to financial reasons, etc. However, if you could find a sole practitioner that would help you, you might have a better chance! THIS IS JUST A SUGGESTION!
Even though butorphanol tartrate (Stadol) can work against the fentanyl in your Duragesic if used in excessive quantities--have you ever used Stadol Nasal Spray? I'm just curious. It worked on my migraines in the past!! The verapamil, Elavil, and Tegretol really combine well to do an excellent job of migraine prevention for me!
Again, I am just thinking about alternatives since your clinic situation sounds hideous to me! Please keep us up-to-date.
Sincerely,
Jon
P.S. As you probably are aware, Shoreline always has ideas worth valuable consideration--as do many other members!!
Drewtn
11-07-2005, 05:30 PM
Thanks for the ideas and information. Sorry my reply is thrown together and might not make much sense.
Let me try to answer some of your questions.
I only get migraines when my headaches aren’t controlled and go untreated. I see aura and then get a 2-3 day migraine. They have reduced from 4-5 a month to 1-2. I take Maxalt MLT and it seems to work well. My daily headaches are more of the problem.
I tried a third occipital nerve injection and it didn’t help at all. I was told that my problem is higher than the normal injection is done. I was told most of them are C2-C3. My problems are at C1-C2. (They learned that from the physical therapy they did at the pain clinic. They could push on each one and it hurt quite a bit.) I guess the nerves are pinched.
I was in a car accident back in 96 and got severe double whiplash. My headaches didn’t start until 99. It took me quite a while to even put the two together. I basically had headaches every day and then started getting migraines also. I went to every doctor and neurologist that might possibly help. I had x-rays done the time of the accident and the hospital said my neck wasn’t broken so I was fine, even though I couldn’t lift my head out of bed. I had to grab my teeth to pull it up! I think I should have had some type of physical therapy back then.
I have been on most meds used when diagnosing headaches. Also had an MRI that was fine. I was on Topamax for over a year until the side effects were worse then the benefits. I couldn’t stand for 10 minutes before my legs would fall asleep. It was great for weight loss though!
I tried Baclofen and it made my sleep apnea worse and I was falling asleep during the day. I am now on Zanaflex day and night.
I just looked at some x-rays that show my neck is out of alignment. The spacing is also closing between the outer edges.(whatever that means, I guess compression of the neck or something) I went to a chiropractor last week and he did an adjustment to possibly move it back towards normal. I spent two days after that in INTENSE pain from hell. I now know a new level of pain. He showed me some dark lines on the x-rays that had increased since the first x-ray he took 4 years ago. He said it is less stable because there isn’t anything holding it together. (Something like that. Sorry, I am still trying to figure out what the chiropractor was saying. I got a copy of the x-rays so I could take them with me.)
I have gone through physical therapy, psychological therapy and most non-narcotic meds. Anti-inflammatorys kill my stomach. I am now on Protonix because of stomach problems.
I am also on Lexapro for depression.
I would love to find a doctor that would work with me. There are only a few pain clinics around this area. I changed my health insurance just so I could go to the one I am at now. Another pain clinic here also doesn’t take headache patients. I stopped in at another clinic and it was only one guy and I RAN out of his office after hearing his thoughts on pain management!! I really feel stuck with the one I have. I just don’t know of a better place to go. I still work full time but miss work a lot. I try like hell to make up my time but it sure gets old. Thankfully my boss is VERY understanding!! I wish he was a doctor!! LOL
Thanks again!!
Drew
Let me try to answer some of your questions.
I only get migraines when my headaches aren’t controlled and go untreated. I see aura and then get a 2-3 day migraine. They have reduced from 4-5 a month to 1-2. I take Maxalt MLT and it seems to work well. My daily headaches are more of the problem.
I tried a third occipital nerve injection and it didn’t help at all. I was told that my problem is higher than the normal injection is done. I was told most of them are C2-C3. My problems are at C1-C2. (They learned that from the physical therapy they did at the pain clinic. They could push on each one and it hurt quite a bit.) I guess the nerves are pinched.
I was in a car accident back in 96 and got severe double whiplash. My headaches didn’t start until 99. It took me quite a while to even put the two together. I basically had headaches every day and then started getting migraines also. I went to every doctor and neurologist that might possibly help. I had x-rays done the time of the accident and the hospital said my neck wasn’t broken so I was fine, even though I couldn’t lift my head out of bed. I had to grab my teeth to pull it up! I think I should have had some type of physical therapy back then.
I have been on most meds used when diagnosing headaches. Also had an MRI that was fine. I was on Topamax for over a year until the side effects were worse then the benefits. I couldn’t stand for 10 minutes before my legs would fall asleep. It was great for weight loss though!
I tried Baclofen and it made my sleep apnea worse and I was falling asleep during the day. I am now on Zanaflex day and night.
I just looked at some x-rays that show my neck is out of alignment. The spacing is also closing between the outer edges.(whatever that means, I guess compression of the neck or something) I went to a chiropractor last week and he did an adjustment to possibly move it back towards normal. I spent two days after that in INTENSE pain from hell. I now know a new level of pain. He showed me some dark lines on the x-rays that had increased since the first x-ray he took 4 years ago. He said it is less stable because there isn’t anything holding it together. (Something like that. Sorry, I am still trying to figure out what the chiropractor was saying. I got a copy of the x-rays so I could take them with me.)
I have gone through physical therapy, psychological therapy and most non-narcotic meds. Anti-inflammatorys kill my stomach. I am now on Protonix because of stomach problems.
I am also on Lexapro for depression.
I would love to find a doctor that would work with me. There are only a few pain clinics around this area. I changed my health insurance just so I could go to the one I am at now. Another pain clinic here also doesn’t take headache patients. I stopped in at another clinic and it was only one guy and I RAN out of his office after hearing his thoughts on pain management!! I really feel stuck with the one I have. I just don’t know of a better place to go. I still work full time but miss work a lot. I try like hell to make up my time but it sure gets old. Thankfully my boss is VERY understanding!! I wish he was a doctor!! LOL
Thanks again!!
Drew
Wren9
11-07-2005, 07:59 PM
Drew,
What are your main needs right now? Are you looking for procedures or someone to maintain your meds (while allowing for tolerance increases)?
I know of some Primary Care Physicians who will not prescribe opiates (or some other scheduled meds) initially, but they will take over the prescribing once a stable dose has been acheived.
For example, I asked my PCP for a specific medication that she was not comfortable prescribing; she did not know what it was. But she said that sometimes when patients had a medication that they'd taken for a long time prescribed by another doctor, that she could "take over" the prescribing.
Have you asked your pcp? Or perhaps it would be easier to find an opiate-friendly pcp since you've exhausted the headache/migraine specialists in your area.
One more idea of a similar nature, and I realize this may not be an option. You could go to a specialist OUTSIDE your area who would work in tandem with your pcp. For example, you could spend a day with the specialist, s/he could make the initial diagnosis and prescriptions. Then, follow up visits would be with your pcp who would consult with the expert. And your pcp would take over prescribing.
Wren
What are your main needs right now? Are you looking for procedures or someone to maintain your meds (while allowing for tolerance increases)?
I know of some Primary Care Physicians who will not prescribe opiates (or some other scheduled meds) initially, but they will take over the prescribing once a stable dose has been acheived.
For example, I asked my PCP for a specific medication that she was not comfortable prescribing; she did not know what it was. But she said that sometimes when patients had a medication that they'd taken for a long time prescribed by another doctor, that she could "take over" the prescribing.
Have you asked your pcp? Or perhaps it would be easier to find an opiate-friendly pcp since you've exhausted the headache/migraine specialists in your area.
One more idea of a similar nature, and I realize this may not be an option. You could go to a specialist OUTSIDE your area who would work in tandem with your pcp. For example, you could spend a day with the specialist, s/he could make the initial diagnosis and prescriptions. Then, follow up visits would be with your pcp who would consult with the expert. And your pcp would take over prescribing.
Wren
duff19
01-08-2006, 05:06 AM
if they dont want to help you and wont be flexible why will you keep going to that same doctor? Ive been through like 10 doctors for my problem. Im sure thats bad but Im just waiting til i can find the right. So dont go to them anymore is what i suggest