I have been on Neurontin 900 mg/day and Carbatrol 600 mg/day as well as Percocet 10/325 3x a day for about 3 months now. This is AFTER I have had Gamma done. My neuro's nurse used to act like I was a pain pill head every month when I called in to get the pain meds refilled (because of the high dose and frequency I had to go get the prescription at his office) I had a discussion with the neuro and he said he understood and he was sorry. He and I discussed MVD and I told him that I was willing to do it BUT because of all the time off trying to get the meds right and being in pain etc that I needed to wait until May 1st because I didn't have any time off of work until my anniversary date. He completely understood and said considering the meds were holding the pain at bay he would continue to treat me the same until then. He then told her in front of me to make sure I got the meds without any issues. ....I call on Friday to tell her I need my prescription refilled she said she would have it ready for pick up on Monday. She called me back on Monday to say that my neuro said he wouldn't refill the pain meds and that he was refering me to a neurosurgeon. I AM SO MAD. What part of "I can't take off work until May" do you not understand? Needless to say it's Wednesday and I have slept about 4 hours since Sunday night because of the pain. I am mad! I feel like he is pawning me off! I am hurting! I am upset! I feel like he thinks I am a pain popping person. I DON'T WANT THIS PAIN..and I SURE didn't ask for it! I just need a little assistance living comfortaby for the next couple of months. Then cut open my head and do whatever you want to make it STOP!
Am I crazy? Has any doctor acted so kind to your face and then pawned you off before? Am I the only one? Are there any suggestions about what I should do now for treatment?
yah thats def annoying im not sure why neurologists get paid all they do is hand out meds! My neuro told me "at least its not a brain tumor" what a jerk! Well my suggestion is if you need pain pills go to the urgent care i see ur in georgia im in florida if you have insurance it like 35 bucks and they will pretty much hand you any pills u want from my experience. I see you also have type 2 pain so do i have you ever tried tricylic anti depressents? i'm on nortriptyline 50 mg. right now and it has helped my pain quite a bit ive read that those kind of anti dep. are better for type 2 pain. Im planning on upping these pills. Just out of curiousity did they find compression in ur mri is that why your doing mvd?
No compression in my MRI. I did have gamma in December and no luck. He has told me along with the neurosurgeon that helped with my gamma that even if there is no compression shown on the MRI that the vessels are so small there has to be one that they can't see. I have been told that twice. I did break both sides of my jaw pretty severely about 20 years ago and they think that may have caused some trama that shifted a vessel later on. I don't know. I hate being at the mercy of a doctor and I hate the pain.
yah this is definately the worst thing ive ever been through!! My first mri didn't show any compressions but when the neurosurgeon ordered a 3tesla mri he found compressions on both sides. I thought i would happy if he found compressions but i'm not..I'm so scared to do the mvd. My pain could be neuropathic i'm not sure mine started with pain in a tooth then they did a root canal and i went into worse pain..so i'm not sure. Did the gamma hurt or make the pain worse?
The gamma didn't do anything. No better. Maybe a little worse or maybe I am just having a bad day truthfully. Everyone tells you that the actual procedure doesn't hurt but it did for me. Having the halo put on truly feels like your head in a vice. So ask for something before is my only suggestion. I would do gamma if I were you though. It's the least invasive procedure and it may work.
jstagrl29 said:
yah this is definately the worst thing ive ever been through!! My first mri didn't show any compressions but when the neurosurgeon ordered a 3tesla mri he found compressions on both sides. I thought i would happy if he found compressions but i'm not..I'm so scared to do the mvd. My pain could be neuropathic i'm not sure mine started with pain in a tooth then they did a root canal and i went into worse pain..so i'm not sure. Did the gamma hurt or make the pain worse?
Considering what jstagrl and shindig said about the tricyclic antidepressants, maybe you could call them and tell them that you have friends that have been helped by this and you would like to try them instead. If they still won't help you, go ahead to the neurosurgeon, let them know you can't have MVD til after May 1st and then suggest the tricyclic antidepressants to them. Maybe they will give you these to hold you off until you can have the MVD. Good luck!
You might want to look into Butrans patch. I take a high dose of Carbamazepine and 20mcg/h Butrans. I havent gone the Narco route as it isnt supposed to work that well for GN, but the patch is a huge part of my pain therapy.
I swap the patch every 5 days, instead of the suggested 7. I find that the last day or two really wean off fast, this could be because of my extreme warm body temps at night.
The reason I suggest the patch is that Dr’s are far more comfortable prescribing it, and as a bonus you don’t wake up in the middle of the night needing a dose.
That stinks and I’m sorry. I’d be ticked off with the different answers like that. Maybe you should get in for an appointment and bring someone with who will vouch that your not abusing your medications and in extrem pain at the appointment.
You could try an ER or urgent care but a lot are changing their practices on opioid perscibing.
Of course you can always look for a new doctor but he also may not want to hand out this type of medications. Most doctors are going to want to have an already established relationship with a patient before handing these out because of the doctor shoppers and the DEA and the publics opinion on narcotics.
Lastly I hate saying this, but we also do not know what the doctor is going thru. With all the hubaloo with the resceduling with Vicodin it could be he no longer wants to prescrib opioids. The other is much big is he could be worried about his pratice or license and could be watched or being investigated by the DEA. With any of these I do think it is wrong to leave a patient high and dry to say with pain. He should be looking for something to help the pain and then if he no longer wants to prescrib opioids is to wean you off as well.
I know all of these answers suck, and I’m sorry about that. But I do suggest you talk with this doctor in person with an advacate on your behalf.
"You might want to look into Butrans patch" -- I never heard of this -- sounds like many scary side effects - but there comes a point where you will do anything to take the edge off!
I was going to suggest from your regular doc you could get that patch - or a lidocaine patch prescription - for topical relief till May.
Some people get a prescription patch that has lidocaine an ketamine in it from a compound pharmacy that makes their own meds.
Did you try talking to your primary doctor and see if he’ll give you the pain medication while you look for another Neuro or while you wait for surgery? My primary would prescribe me meds (including some opiates) while I was inbetween specialists. He didn’t like doing it long-term, but he understood why I needed them. If not, maybe you can have your Neuro refer you to pain management just for the Percocet. But make sure he lets them know you need to be seen immediately because you no longer have pain meds.
It’s terrible that this happens so often. I hope you can find someone to help soon.