ready to give up and go back to 75 MCG fentanyl

[GordonCook]

since last Thursday I have been on 50 MCG and it is definitely not good.  I did the preceding months on 62 which requires twice the monthly co-pay of $85.

I have bragged here that I was proud of taking only two Norco a day. two days ago it was one at  10 PM and the second midmorning.   But my six-year long string of pain at  night when I am just lying there and not moving and not getting exercise is now back with a vengeance.   since Thursday I have been getting up at least twice sometimes three times at night and coming down stairs to my desk computer and exercise machine.  I've been able to spend a fair amount of time down here but by yesterday I was very sleep deprived which is not good.

TUCK  thank you for the response you left about not rigidly sticking to two.   I can say right now it looks like I'll go to three or four until I get this straightened out with my primary.   Yesterday  daybreak I was exhausted and really groggy I took in Norco at night next 9 o'clock in the morning and a second at 6 PM last night I cannot get from that 6 PM dose to 6 AM.   I just have a dose at about 4:30 AM. And I will take another about midday if need be.

I don't think I am making any progress toward 50 MCG as a dose I can  live with.   I went to bed at 1 AM woke up at two; woke up at three; woke up at four.  I tried some stretches in bed to avoid having to come down.   no good would not work. I have a major cervical revision in my lower neck and that now is feeling quite sore,

it looks to me  like 50 MCG's is not reachable and my primary has told me that in his opinion 50 versus 75 MCG's is not that significant.

I guess I will be contacting my primary by tomorrow and asking for action.

One possibility might be to go to three or four Norco per day and see whether after a week or two I really needed that many and if I do go back at 75 for the next month if I don't then what? I am not sure. my primary said to me however that he would rather see me on 75 MCG and taking either none or one Norco for breakthrough rather than the lower dose and two or three or four to survive.

I did 10 minutes on my cardio strider  and have been sitting here in front of the keyboard for perhaps 20 minutes with out any of the pain in the SI joint area on the right side that has been my ground zero since last May.

What do you all think? Have I overlooked anything?

[Tuckamore]

I haven't seen your new question - I'll look. Unfortunately I've been very ill and off the boards for awhile.

Yes I have been on Neurontin. It did little for me. I didn't have an issue weaning off the drug. I imagine everyone has their own experience but for me it wasn't an issue. My mother was also on it for several months. She didn't have an issue weaning off of it. They took her dosage up pretty high too. It still did little help alleviate her nerve pain.

I found Lyrica to be a better medication - at least for me. It's like revered up version of Neurontin. It's pricey too. It usually requires lower doses and produces less side effects than Neurontin.  Now everyone's system is different - and what is effective for one doesn't mean it will be effective foe another.

I hope you have great results and will keep us posted. As always I wish you the very best. You've been missed.

Take Care,
~Tuck

[GordonCook]

finally did post new question. just hoping thatthe recommended neurontin dose continues to work.  any experience people have with it  wearing off?

[Tuckamore]

Waiting to hear from you again. How's it going? Do you still need help posting a New Question. I'll check back later today.

Your Friend In Pain,
~Tuck

[Tuckamore]

Great to hear from you again Gordon. I've been wondering how you are doing!

Sorry I am tardy in my reply. I've had a heck of a month! :o)  But doing better!

To post a new Question click on "Post A Question" - mine is not red it's green. However we have two formats as we transition. The old format it's green. Try it again and if it doesn't work let me know - or click on "Contact Us" at the bottom of this page. Our Contact ppl will help you through it. If it was a glitch they will know.

I'll look forward to you to your new question. Hope things are getting better for you.

((Hugs)),
~Tuck

[GordonCook]

I wanted to post a new question  and went to the red ask question box and I can't get it to work.   Dog gone it!!!!

I wonder what I'm doing wrong? never had this trouble for on this forum.

[Emme80]

Hello Gordon!  :) I've been keeping an eye on your story, reading  your struggle- I'm sorry that you have such pains. I must say, you are much stronger than I am! I admire your push! I'm 41, feel like I've the spirit of a 24 yr. old, but the body of a 90 yr. old.(the last couple yrs. have taken me in a rough ride w/Chiari...ran me down, I'll recover though & hope things will see light again) but I really love your spirit!!!
I was put on Neurontin almost 3 yrs. ago.. I get very nervous about a new medications (I've had Dr's put me on meds. that I should NOT be on given I have  Hashimoto's , among other interactions w/other meds. that are  too close of a...disaster waiting to happen meds... that I caught and had to bring to a Dr's attn. I feel I've to bring all meds to a Dr's attn. clearly b/c I've had bad interactions before.) so I def. do my research to weigh benefits/risks and interactions!  I was nervous about Neurontin, reading some of the possible side effects, but I have not had any of the horrible reactions that I was weary of- a lot of anti-depressants I agreed to try that can help block pain signals&nerve pain (i.e. Cymbalta) are...rough. But, Neurontin did not effect me negatively-I was worried, but it turned out ok! I experienced weight gain-but that could EASILY be attributed to how Chiari hit me & floored me (between Chiari, the Decompression surgery and a total thyroidectomy, I can't tell what's what when it comes to energy depletion, lethargy & general feeling of malaise. And surgeries take a lot out of you. Especially so many..8 in 10yrs..)  
So, I'm not sure if Neurontin has anything to do with my..state. I actually am unsure it does help, but, my Neurologist suggested I stay on it for at least a year after the Chiari surgery as that's a lot of nerve damage. And u must agree. I don't care to experience more pain that it might be covering right now. ;) But, I just thought I'd say it's worth discussing w/your doctor. I can say that I too have dealt with sciatica issues - but nowhere near as bad!!! But, I was told yrs. ago ( on right side) that I had nerve issues there. Total burning, shock spasm like pain..I stuck with acupuncture&shiatsu, PT. Every time the PT did that "hit the yeow" button, I couldn't help but jump out of my skin-like my body could not help but literally jump away! It was clear, very clear there was a issue w/sciatica The shiatsu did help keep it...less inflamed? He kept working on it-I'm a firm believer in Shiatsu. I miss it terribly! I know it helped.
Just wanted to say I really admire your spirit, strength. I wish I had your push!
As well, just wanted to say that I too am wry scared of meds. , but was surprised that Neurontin did not carry all I read..(I don't sleep well at all, it did not help me there..I don't know the last time I slept without waking every 2hrs. or peacefully-refreshed sleep-no idea what that's like ;) )
But, everybody reacts to meds differently! So, Neurontin may not be the thing for you. But, I found it to be a kind medication w/no huge or little negative side effects. Just thought I'd give a good word for a med. that am an help, as so many are scary!
I sincerely hope you get to a comfortable spot! And I'll continue to read your story to find you'll be doing well & as inspiration-your spirit us one I wish I had!!! Awesome! Thank you'd or letting me see how to fight for health and getting to the best possible shape.
:)

[GordonCook]

I think what my primary meant is that in his opinion whether I wind up taking 50 µg as opposed to 75 µg for the rest of my life from a physiological point of view is not likely to make a lot of difference in the sense that being on 50 rather than 75 does not create significantly less problems.

[GordonCook]

Thank you Tuck

my physician really did not want me to try to go to 50.... I tried primarily because of pressure for my wife to thank God seems redesigned to me going back to 75 and staying there.   remember when I was on 75 back I think in November sometime things were pretty decent.  But I took to Norco one yesterday at 4 AM and one at 7 AM and a third at about 6 PM to night

I lay in bed and probably dozed off for an hour maybe a little longer woke up feeling extraordinarily sore, came down and did some bike exercises into my surprise I been functioning at my computer ever since time to stop and go back upstairs and see what kind sleep I can get

I am going to  rendezvous with a young guy from the next block my been paying to help me and we intend to drive to the doctor's office to pick up the prescription and see what hassle the insurance gives in filling it.

I looked up Lyrica and dear God the side effects have scared me off of that. I've not looked up Neurontin  and I didn't just send an email to the attorney who 15 years ago when a surgeon put screws in my cervical disc rather than the vertebra  recommended a malpractice attorney

turned out that because that's jury was done in New Jersey under Christie Whitman's tort reform I had no case.   this situation is quite different.

[Tuckamore]

It looks like you've covered all your bases. I may have misunderstood your physician's statement that 50 - 75mcgs is not significant. If he meant it didn't make a difference to him which one he prescribed - than I get it. If he meant there isn't a major difference between the pain relief of the two doses, I strongly disagree.

Life is too short to suffer with uncontrolled Chronic Pain. If your physician is willing to RX 75mcgs why not stay with that dose? Most physician's prefer that we take less SA opiates - even if that means we have a higher dose of a LA opiate.

Restful nights with uninterrupted sleep is imperative in promoting good health and achieving optimum pain control. I'm not talking about an occasional trip to the restroom - I'm talking about getting up and staying up for an extended period of time in an attempt to manage pain. When this occurs several times a night - let alone once - you can't possibly feel well - or manage pain effectively.

Forgive me if we've talking about Lyrica - or Neurontin. Lyrica has made a difference for me, in pain and in sleep. Neurontin wasn't as effective but I know it is effective for others. I take 60% less opiates than I did 20 months ago. I wouldn't have lived with that reduction without Lyrica. It's still very tough - but Lyrica has helped. You may want to discuss adding Lyrica or Neurontin with your physician.

If you and I were 20 years old - (and I in better health) I might have more concerns about taking opiates, etc long term. Whatever time I have left on this Earth I want it to be as comfortable as possible. I want to enjoy my children and spouse. We can't do that if we can't even sleep! I think you are correct in considering returning to your previous dose of Fentanyl. Some things we just have to learn to accept. Do what's best for you my friend!

My Best,
~Tuck

[GordonCook]

I have been off-line here for a good month have gone back to 75 µg but the night times are still difficult.   I am very frustrated and a bit discouraged and I must figure out how to ask a new question.