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still floundering/neurologist vs pain docs

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Posted 10/13/2010 8:53 PM (GMT 0)
Peeking in once again trying to figure things out. I mentioned long ago that the neurologist I was referred to said she could not help me but referred me to the Michigan headache clinic. This had put me into a big "funk" as I was not sure if I should try again on doctor #19 when so many had already said they did not know how to help me. Well MHC called me and made an appointment for Nov. 9. I have been hemming and hawing all these months trying to decided if I would go. My pain doc, when I mentioned it, said that it probably would not hurt to go "just to see if we had missed something." Well it wasn't until 2 weeks ago that MHC called and said that before I could come there ( I still hadn't decided) I would have to get off of all my pain meds( but could not recomend how to do that as they "were not my doctor", could not tell me what to do for the pain "as they were not my doctor", didn't feel the need to contact any of my doctors or ask for my records and to let me know that I would need to show up the day before so as not to be late for a 7 am appointment which would take all day. I was then to plan on "hanging around" for 3 days until they could get me a bed and would then hospitalized me for 3 weeks during which time I would be treated by IV's, go to group and individual therapy and then they would decide which meds , if any , to treat me with. I was rather shocked at this plan and told them that I could not confirm until I spoke with my pain doc to see if she agreed with the plan as it would be her job to get me off the opiats yet still control pain until I went there. I have not seen her since that discussion as she has been ill but do see her this coming Wed., one week from today. I did go back to the neuro today for a f/u, explained what was "planned" and her reaction , I found interesting. She said that I needed to get off of all the opiats because they really don't help.
What all this rambling leads to is this question: Have any of you had any experience with neuros who, I have found, seem to be anti-opiates? This is the 3rd neuro who said opiates don't work and would never prescribe them. There seems to be this constant opiates vs no opiates between pain docs and neuros. Has anyone had any experience with a neurologist who did not "dis" pain meds?
Sorry to ramble, I hope this makes some sense.
catahoula
Posted 10/13/2010 9:59 PM (GMT 0)
Hey there Cat (hope you don't mind if I call you Cat)
Did the MHC say why they needed three weeks??? are they planning a sleep study?
I would contact the MHC and ask for paperwork so you can fill it out (at home) before arriving
for your first appointment so you don't have to waste time filling out all the forms on that
day, and it would be easier on you...Seems like they want to do quite a work up on you
and if you don't have insurance then it might be very expensive at the MHC ask
if they take your insurance (call them) and if they don't think about cancelling your appointment cause
it sounds expensive (ask what they typically charge for all this). Not all neurologist are the same, seems like you should try to
find one that specializes in Migraines and headaches, not all neuro's do, to find if they do you'll
have to call them and ask if Migraines are their speciality, Some neuro's specialize in MS, some in
Migraines, some in Epilpsey, ect...so maybe you've not found the right neuro for you...There are so many neurologic disorders...
Hope this info helps better.., I would say to try a neurologist that specializes in Migraines if it's headache relief you are wanting
((((((((((((((((((((((((((((((((Cat))))))))))))))))))))))))))))))))))))))))))
healing Hugz
Posted 10/14/2010 2:58 AM (GMT 0)
As someone with a history of very severe migraines, I too looked into these headache places, and all of them want the patients off of narcotic pain medications before you come in, or they do it there. I believe like 99% of headache/migraine specialists think pain medications are the root cause of headaches/migraines causing rebounds. And I know for fact, alteast for me, that was a huge problem. But I also found out that taking pain medications for other pain issues and not for headaches helped alot. But I got lucky and found a medication that isnt even used for migraines even off-label made them almost disappear.

I understand why your not sure about this, I would be too. That headache place needs to make contact with your pain doctor or vice-versa, someone needs to figure out something. I would do some more research, maybe get other opionions, but I understand the wanting to be headache free, but is it worth getting rid of but suffering from other pain issues?? I know they're very anti-pain medications there, so matter what, if you go your gonna have to come off of them, but is it worth it to you??

-kitty
Posted 10/14/2010 4:58 AM (GMT 0)
"Opiates don't work" is kind of a broad statement and whether they work or not depends on what one is talking about using them to treat.

If one limits the topic to migraines/headaches then that statement does hold water. Most if not all opiates/narcotic pain meds have the potential to cause headaches and/or to trigger migraines either while they are used and/or when coming off of them and can also make headaches worse. Sure you may get relief from your headaches when you get a dose but as soon as the med wears off the headache can come back stronger than ever (rebound headaches). The same thing though can happen with non-narcotc pain meds (aspirin, ibuprofen, etc) if you take enough of them over a long period of time.

Many people though find themselves in a catch 22 when they have pain other than headaches/migraines and opiates/narcotic medications are the only thing the provides any relief for them and they also are prone to migraines/headaches. Many times it is hard to find the right balance to prevent or lessen the headaches and still have decent pain control for their other conditions.

I can certainly understand why the headache center wants you off of all pain meds before coming in for treatment and also why they treatment will likely take a few weeks. They are wanting to eliminate a possible trigger and while in the hospital they are going to try to determine all of your triggers as well as develop a lasting treatment plan for your headaches.
Posted 10/14/2010 5:38 PM (GMT 0)
I guess my biggest issue is I don't truly believe I have "headaches". ( oh how i wish I could find the finite definition for headache. I have shooting pains in my ear, I have throbbing pain in the supra trochea of my right eye, I have a building pressure in the back of my head, I have pounding throughout my entire head, I have a feeling of "bobbleheadedness" ( do you know what I mean?, I have throbbing pain behind my right eye, I have a shooting pain directly on the top of my head, and on and on? Is this a headache?
I had "headaches" from stress or if the kids are bugging me or if things are going wrong and that I can resolve with an asprin or tylenol but this? For the first 3 years of this problem ( its been 10) I took no narcotics. Tried with a neurologist and we tried all the " neuro" meds( topomax, depakote, keppra, tegretol etc) but none of them even came close to giving any relief. When it would get so intense I would go to the ER and a shot of dilauded would help. Thats why when the first neuro ran out of ideas, and the headache man at Rush ran out of ideas, I was referred to the pain clinic.
I don't know, I think with hearing another doctor being negative , I start to feel "wrong", do you understand what I mean? As though I am taking the easy way out or "doing it wrong" or some feeling I can't quite put my finger on.
Perhaps I would have felt better if the headache clinic said "hey, come down, we'll talk, get a history, get to know your symptoms and do a consultation" I might have had a more favorable inclination to go. This way ..? I don't know. I don't want to go in feeling like I've been doing it wrong, I feel bad enough to be in constant pain, not be able to work, not feeling I contribute to anything...Its just more of a downer.....
This whole thing has just really "triggered some old buttons".
anyway...
I wish pain free days for you all...I truly do.
Cat (ahoula)
Posted 10/14/2010 9:36 PM (GMT 0)
hey catahoula, i don't know much about the long-term treatment of chronic severe headaches is but after reading most of this i think i know now what you got for a neurologist (and it is common with neurologists). "narcotics are bad", "they make you worse in the long-run", opiates don't help headaches": they are right opioid-induced hyperalgesia occurs in 1% of patients. if they are not trying to diagnose your headache problem i would not want to go through the plan they perscribed. it is true that ambien/lunesta may make your circadian rythyms shot and maybe all tranquilizers do it also but when you find a combonation of medications that work for you with the right doctor screw these other doctors that think "narcotics are bad for pain" and let them try it for 10 min. and see how bad they think it is then. best wishes to you.
Posted 10/14/2010 10:22 PM (GMT 0)
If after 10 years of being treated for headaches with no progress being made I think I too would be doubting the "diagnosis". At this point I think I would be looking for causes of head pain of the type you describe.

When you hear clip clop clip clop it is pointless to focus on horses when it could be zebras or donkeys, but one should not rule out horses either. Keep an open mind until you actually see and know what is making that noise.
Posted 10/14/2010 10:40 PM (GMT 0)
Cat-
The headaches you get from stress/the kids should respond to the muscle relaxants they recommended. Honestly, that should be even better at getting rid of that kind of headache than opioids.

As for the ones that are back behind your ear & radiate, those could be migraines. Have you been checked out by a dentist, though? They could also be either from TMJ or from grinding your teeth (bruxism) with can be either related to stress or genetics. I have an occlusal night splint to prevent grinding my teeth & it makes a huge difference when I don't use it. When I'm home & under a lot of stress I will sometimes even wear it in the daytime. A custom split runs around $450. Dental plans will often cover one splint per lifetime so if you have insurance it might not cost much at all. Otherwise there are OTC versions that can provide at least some relief for some people.

Migraines almost always are accompanied by sensitivity to light, sound, smell, heat, etc. When I get one it is so bad that the little bit of light coming in on the edge of my room-darkening shades is enough to make me throw-up. I end up having to lie on the tile floor with a blindfold over my eyes ... and heaven forbid if the kids upstairs are home -- then the only thing that works is migraine meds. The tricky thing is that migraines often can come immediately AFTER a stressful period. So getting the stress under control can end up helping both tension & migraine headaches for different reasons. But often meds are needed to break a cycle long enough that relaxation techniques can take hold.

Hope that helps!
frances
Posted 10/15/2010 12:59 AM (GMT 0)
catahoula
The only thing bad about not going through with going to the clinic, is that since the neurologist made the referral, ( is that correct?) well then the doctor could possibly put in in your records that you are noncompliant or something like that and that you do not want treatment! I am not saying your doctor would do that, but there is always that possiblility. Especially since your doctor took the time to get you the appointment. Just a thought to consider. I can understand your hesitation and concern about going off your pain meds and the requirements of that clinic. But you know maybe it would be worth trying it anyway, I have looked up the site and well I can understand your apprehension, Personally I have never! ever! met a neurologist that I liked!! or trusted!!!, or have ever had one that really done anything for me!!!! I have seen allot of them too!!!! And you are right most of them do not like pain meds! But with that said, maybe.... just maybe..... they might be able to come up with some cause for the pain that you feel in your head. I see that they have given you anti-seizure medications for the pain in your head? Have they also checked you out for having seizures? or anything like that? When you have this pain how is your BP? You know what you describe sounds bad, I guess I would think that you have nothing really to lose by at least giving them a shot at trying to find out what is going on and hopefully coming up with a treatment for you that works!

I wish You Luck!!

White Beard
Posted 10/15/2010 1:17 AM (GMT 0)
Geez Cat! God bless your heart! I've been a "migrainer" since I was 12 years old.  I've been given everything in creation! I went into a naphylactic shock on Imitrex and because of that, their hasn't been a doctor who will try me on even the newest of drugs. I'm glad they work for both of my sisters who have migraines and my Dad. My maternal grandmother used to get them and they were called, "The Headache"!  We understood why when we all started getting them at various ages. I also have a syrinx which is a rare disorder causing a cyst to fill with spinal fluid on the spine. I've seen a number of neurologist in my time. Most used NO opiates and one used Stadol nose spray so it would get to my head faster...really. I don't know if it really helped just because I got so irritable on Stadol that I didn't stay on it long. When they found Syringomyelia (the PC had no idea what it was) I was sent to a neurosurgeon who is awesome and quite well published and respected in the Nation. He is amazing. He started me on Lortab 10/500 and fentyl patches. As the Syrinx (that's what they call the cyst) grew so did my pain thus my introduction to PM! Yikes. I still see my neurosurgeon who knows I have migraines, and I have an MRI every 3 months to gauge the growth of this stupid thing trying to do me in! At any rate and all of this to say that since I have been on Oxycontin and Oxycodone, I have only had one headache. Of course it lasted 3 weeks, but that's the norm for one of my migraines unless I go to the hospital and get a pain shot and phenergan. I have a storehouse of that stuff and wouldn't be without it. Many the nights I have been on that cool tile floor in the bathroom, in the dark, with cold compresses and dark wash cloth over my eyes. God forbid anything touch my hair because it hurts too! What a miserable life that can be and 10 years without much relief, I'd almost say try it...see if what they want to do is right. But on the other hand, chronic pain from something else. Whatever you do, you will do it after much deliberation and I believe you will have made the right decision for you. Take care and I hope that somewhere someone will help you. Stac/Catz4
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