I hope everyone is pain free today. I really need some help. I am not getting anywhere w Drs. I had y apt in Iowa city hospitals yesterday and got nothing. They only discussed the 3 surgeries. Not any meds or new meds. I don't want to try these surgeries as they seem invasive and no clear results. And possible side affects. I can NOT get my Drs to do a thing. I saw my primary care Dr. She sends me to neurologist. He sends me to Iowa City and also back to primary care for any meds. She sends me to mental health as they do not prescribe antidepressants or pain pills. She has given me Amitiptyline but nothing mmore/ can't get sleep and they won't try any sleep aids. So 4 DRs and still I am on this merry go round and I want OFF What do I do? Out of 4 Drs none of them wnt to do a thing. Keep sending me back and forth. I am at my wits end and so tired of this all. What is your advice? Any ideas? Sure not getting anywhere. There are other meds and combos of meds I could try but they just won't do it. HELP
If you're going to get off the merry go round, then you need to be seen by a doctor who understands facial neuralgia and neuropathy. Have you checked the member recommendations tabled under our "Find a Doctor" sub-tab in the Doctors tab of our menus? The following are listed with positive recommendations from members who have seen them:
Iowa
Mount Vernon
PCI of Iowa
Dr Bob Strutthers
Marion
Dr Tami Feickert
FYI, Amitriptyline is one of the tricyclic antidepressants and is noted as a standard for neuropathic pain in the practice guidelines of the International Association for the Study of Pain. If you need assistance in getting to sleep, it may also be worth discussing a low-dose evening-only prescription of an anti-anxiety agent like Lorazepam, which has a mild sedating effect.
It is understandable that most MDs won't prescribe opioid drugs for facial pain. Though they help some neuralgia patients, they are ineffective in the majority of neuropathy patients. You definitely need to find a doctor who knows this field.
Regards and best
Red Lawhern, Ph.D.
Resident Research Analyst and Moderator, LWTN
Amitriptyline has helped me immensely. It is also amazing for sleep. I took it about two hours before bed and had the best sleeps of my life while I was on that med. What dose are you on? Maybe it isn't high enough. You need to titrate up. I started out at 25mgs but was up to 60mgs at one point to find relief.
You do need to keep searching for help. Look up universities and large hospitals anywhere within driving distance. And ask other members. There are some really good active groups on Facebook too.
justjane37 said:
Amitriptyline has helped me immensely. It is also amazing for sleep. I took it about two hours before bed and had the best sleeps of my life while I was on that med. What dose are you on? Maybe it isn't high enough. You need to titrate up. I started out at 25mgs but was up to 60mgs at one point to find relief.
You do need to keep searching for help. Look up universities and large hospitals anywhere within driving distance. And ask other members. There are some really good active groups on Facebook too.
I am already on 35 mg of amit and it does nothing. I can't sleep and none of the Drs seem to want to gv me anything at all. That is if I can even get them to call me back. I called another univ. I asked if their neurosurgeons did ths MVD surgery and she wouldn't even answer that question. Said to send my records and they would cll me back. I seem to hit a dead end everywhere I turn.
There is an important bit of data missing here, Moose. It can take a month for Amitriptyline to build up in your blood stream. And 35 mg is a very minimal daily dose. The following is from Rxlist.com:
Initial Dosage for Adults: For outpatients 75 mg of amitriptyline HCl a day in divided doses is usually satisfactory. If necessary, this may be increased to a total of 150 mg per day. Increases are made preferably in the late afternoon and/or bedtime doses. A sedative effect may be apparent before the antidepressant effect is noted, but an adequate therapeutic effect may take as long as 30 days to develop.
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Regards, Red
For pain the initial dose of amitriptyline is 10-25mg at bedtime, and increased by 10-25mg weekly up to 75-150mg. It’s a lower regimen than the one used for depression. It typically requires a 2-4 week trial of titration before you give it up as ineffective.
I agree with the above posters. You need to give Amitriptyline quite a while to start working. My DR will say two to three weeks for a dose to set it but in my two years experience it is more like four to six weeks to totally take effect.
And I do understand your frustration. It is safe to say that most of us TNers have been there or are still there. Finding a DR who understands and is willing to help is not an easy task. Some of us get lucky but many of us do not. It took over a year for me to find a neurologist that specializes in facial pain and actually understands ATN. I cried when I met him because I was so exhausted from being turned away by other DRs or having the BS stereotypes thrown in my face over and over again. And in the meantime having to deal with the pain, the pain that will make you go totally insane and feel so desperate that you would try anything.
Don't give up. Keep searching. And we are here for you. Red has a wealth of knowledge as do many of the members on this site.