Gabapentin prescription troubles

General General TN & GPN (Old Site)
21

That's terrible. I'm on 800 mg a day but from what others say they are on, we are still on a low dose. You should definitely talk to the Manager and find out what is the problem, you don't want to mess around with not getting them. I usually only take 600mg but I keep them at 100mg each just in case I need to add one or two for severe breakthrough pain. You are possibly going to need a new Pharmacy that is capable of supporting your med changes.

I had to switch recently in order to have delivery and what a mess. They took longer to fill prescriptions and then I was approved for 2 more vitamins by my coverage and that sent them into a tail spin. After 2 hours my order wasn't filled then when it was they tried to charge me for the vitamins, it took 3 tech's and finally a manager to get it somewhat together.

It was like you said the tech's just stared at me as if I had 3 eyes and wouldn't budge from saying "sorry it's not covered".

She tells me that they need a week notice for the vitamins! My old Pharmacy filled my other 2 vitamins without this extra hassle. So I checked back with my old Pharmacy and they will deliver and I'm back with them.

I had someone waiting for me and the whole procedure to get my order was about 30 minutes and that was on top of the 2 hours since I had put it in. The manger wasn't very apologetic either.

The point is this...my old Pharmacy will bend over backwards to try their very best to provide a good service and care for their customers and then their are others who don't. It took them a while but they were able to get me on a free delivery service.

But there was a time a few years back when my Pharmacy was low on Gabapentin and I had to come back for the rest. I even said to her in a half joking manner....."wouldn't that be scary if no one got there med's?"

Just think of all the people on pain meds etc., not too mention people on antidepressants (which I believe are being pushed by Dr's).

Society would have a melt down!!

I used to wait to get my meds refilled until they were close to being done but now I get them refilled monthly and hang on to the leftovers that I didn't use, just in case.

Don't feel bad for having a dose upped these are suppose to be professionals and I'm sure they see way higher doses.

Like you needed that extra burden with this horrible disease.

I wish you all the best,

Cheryl

22

I too had trouble but doc wrote RX for 300mg 4 x a day. This satisfied pharmacy and ins.

23

For me, gabapentin turned me into a zombie....and that was even with beginning dose levels. Even over time, I never seemed to adjust to the side effects and therefore was unable to increase up to a therapeutic dose level. This med really interfered with my ability to think. I would start to say something and then stop in midsentence, completely forgetting that I was even talking. I could barely function at home, let alone go to work! I know for some it really keeps their pain at bay...but for me, the side effects were intolerable.

golf nut said:

I am taking 900 mg per day with 300 mg capsules (2 - 3 X/day). Because I am a Vietnam vet I am able to get it through the VA. It makes my pain tolerable but does not completely eliminate the pain. However, I don't want to do an MVD like is recommended by by neurologist.

Curious about what others have experienced as far as side effects.

24

I have been to Barrows. I saw Dr. Peter Nakaji at Barrows who does both Gamma Knife and MVD. He said I should do the MVD after viewing my MRI. The MRI shows a deformity and possible volume loss of the proximal left trigeminal nerve with its cisternal segment. The problem is I am a chicken and don't want to have the surgery. So I keep trying anything non-evasive out there and hope to find something that works. Do you know anything about the Arizona Pain Specialists? They have several clinics in the Phoenix area and seem to specialize in pain issues. My wife has been fighting cancer for the last two years and we have spent many days at Mayo Arizona. So I have really good feelings about Mayo as they have been able to cut out my wife's cancer and hopefully cured her. That is the other reason I don't want to do the surgery, since it would effect my caretaking duties. Thanks for the info on Dr. Shetter. I think the neurosurgeon I saw works with him.

Bebo said:

Run as fast as you can to Barrows!!!! See Dr. Andrew Shetter. He is a god when it comes to MVD. Barrows invented the surgery. Barrow is rathed in the top ten neuro centers in the country. Mayo in AZ doesn't even hit the top 100

25

I went to Dr. Bollimpoli when i lived in AZ . He is Great 480-■■■■■■■■. He has office all over.I went to his office on 7th st,

26

Just checked them out. He is with Valley Pain Consultants. His name is actually spelled Bollimpalli. There office is closed today, but I will research them next week. Thanks.

Bebo said:

I went to Dr. Bollimpoli when i lived in AZ . He is Great 480-467-2273. He has office all over.I went to his office on 7th st,

27

OMG, I’m going into the university hospital of north staffs on jan 15/14 for MVD…having read about Margaret’s experience I’m wondering if I’m doing the right thing in having the op, please can anyone advise me?

28


Me too but I am allergic to a lot of the others. My adult children are always complaining that I don't listen when in fact it's a mind chore to remember everything! I must remember to tell them that they do the same because I've told them what a huge side effect it is from Gabapetin, but they forget, hahahaha. I feel bad for them being robbed of a physically and mentally active and capable mom...:(

I would love a part time job but I probably won't last long since I won't remember most of it. I'm on aish for other things too and I'm very thankful for that but it gets lonely. I'd rather be forgetful than in constant pain that's for sure. I write notes and I research stuff etc. to keep my mind somewhat active. I can't go on someone else's schedule though, I have to be able to stop when I need too, oh how I wish I could tolerate other meds that didn't do this mind numbing thing, even writing this is draining!! Words just don't come as quickly as they use to!
Not Again said:

For me, gabapentin turned me into a zombie....and that was even with beginning dose levels. Even over time, I never seemed to adjust to the side effects and therefore was unable to increase up to a therapeutic dose level. This med really interfered with my ability to think. I would start to say something and then stop in midsentence, completely forgetting that I was even talking. I could barely function at home, let alone go to work! I know for some it really keeps their pain at bay...but for me, the side effects were intolerable.

golf nut said:

I am taking 900 mg per day with 300 mg capsules (2 - 3 X/day). Because I am a Vietnam vet I am able to get it through the VA. It makes my pain tolerable but does not completely eliminate the pain. However, I don't want to do an MVD like is recommended by by neurologist.

Curious about what others have experienced as far as side effects.

29

I have a gabapentin script for 100mg as needed and 2 300mg 4 times a day and 2 400mg 4 times day and am able to get them all filled When asked by the pharmacy I told them that the Doctor allowed me to go up and down on my meds based on how bad the pain level was at the time I was taking 800mg 4 times a day I then was able to go down to 700 mg 4 times a day and I am now on 600mg 4 times a day and trileptal 600 mg 2 times a day and am hopefully going to be able to go down to 400 mg of gabapentin 4 times a day The gabapentin stoped working at 3200mg a day so the doctor put me on trileptal and I was supposed to off the gabapentin as I could with out pain Good luck you should have your doctor call the pharmacy

30


Sorry, but I must correct you here. Microvascular decompression of the trigeminal nerve (MVD) was "invented" by Dr. Peter Jannetta in 1967. In fact, it is also called the Jannetta procedure. http://en.wikipedia.org/wiki/Microvascular_decompression

Just as an aside, Dr. Jannetta (and his residents) did my first MVD in 1998, allowing me almost 9 blissful and pain free years :)


golf nut said:

I have been to Barrows. I saw Dr. Peter Nakaji at Barrows who does both Gamma Knife and MVD. He said I should do the MVD after viewing my MRI. The MRI shows a deformity and possible volume loss of the proximal left trigeminal nerve with its cisternal segment. The problem is I am a chicken and don't want to have the surgery. So I keep trying anything non-evasive out there and hope to find something that works. Do you know anything about the Arizona Pain Specialists? They have several clinics in the Phoenix area and seem to specialize in pain issues. My wife has been fighting cancer for the last two years and we have spent many days at Mayo Arizona. So I have really good feelings about Mayo as they have been able to cut out my wife's cancer and hopefully cured her. That is the other reason I don't want to do the surgery, since it would effect my caretaking duties. Thanks for the info on Dr. Shetter. I think the neurosurgeon I saw works with him.

Bebo said:

Run as fast as you can to Barrows!!!! See Dr. Andrew Shetter. He is a god when it comes to MVD. Barrows invented the surgery. Barrow is rathed in the top ten neuro centers in the country. Mayo in AZ doesn't even hit the top 100

31

Valerie,
Saw your statement about the MVD and wanted to tell you that it is my belief that no one knows your pain as well as you do. I suffered with TN pain for years, but with the right team of doctors medication controlled my pain. However, I began to have break-throughs years later. Because I also have Ménière’s and had a similar surgery as MVD, Vestibular Nerve Section I can relate. My 2 surgeons wanted to do the MVD at the same time but unable as TN is on right side and Ménière’s on the left. Good news came years later, in fact almost 3 years ago. My TN got so bad that I researched for another great team of doctors and found them. I had a Ballon Compression as I was not a candidate for MVD. I just wanted to give you some feedback. Good luck with your surgery.
Kayron



Valerie said:
OMG, I'm going into the university hospital of north staffs on jan 15/14 for MVD....having read about Margaret's experience I'm wondering if I'm doing the right thing in having the op, please can anyone advise me?
32

I don't deal with the pharmacy when they get confused. I email my doctor and he emails a new prescription with the max refills. Done.

33

Henry - I was under the impression that for Gabapentine the max you could have is 3600mg per day, 7200mg sounds dangerous

34

lol...way to get the situation under control kcmustang, hahaha....I've just about got my Dr. trained , he actually didn't bug me about antidepressants this time, I can get my 3 months of refills (the goal for me is 6 months) I check them over and let him know if he's made a mistake and then he corrects it. It's becoming a very fruitful relationship, same with my old Pharmacy that I just went back too. They love how many I get filled, 7 meds, 3 inhalers, 4 vitamins. caching! Thank God 99% are covered and they will now deliver my meds for free.

Now if I could only get my Dr. to communicate via e-mails. lol

All these things take time though, so don't get discouraged when you come up against health providers and their assistants that aren't in the loop, it takes time for them to get to know you and you to know them. Hopefully you weren't in pain when this happened, I tend to have a short fuse when I'm in pain and it aint pretty. I'm still working on that. I've almost quit my Dr. but he's coming around, only took 1 and a half years, keeping in mind that I have a few things wrong with me not just TN.

Good luck

kcmustang said:

I don't deal with the pharmacy when they get confused. I email my doctor and he emails a new prescription with the max refills. Done.

35

Wrag:

Probably is for most people. But remember, I've been on it for eleven years, pretty much stable at 4800, and handled it well. My doc is watching, but he's nearly retired and has only met one other who can tolerate such high doses. I don't like it, but the pain is too much. Thanks, though. I think we, over the years, try different meds at different doses. What is too much for me, may not be enough for you, etc....

Wraggy said:

Henry - I was under the impression that for Gabapentine the max you could have is 3600mg per day, 7200mg sounds dangerous
36

It looks like they make a 800mg tablet. Why not have the doctor write an RX for that. Don't worry I think we all feel like addicts. Somedays I feel like I’m a mini pharmacy.

37

Same here mike...my kids bug me about it. I write down what I take and when on a magnet pad of paper that's on the fridge. If I don't I can't remember, you know it's bad when....

mike said:

It looks like they make a 800mg tablet. Why not have the doctor write an RX for that. Don't worry I think we all feel like addicts. Somedays I feel like I’m a mini pharmacy.

38

The reason has nothing to do with addiction. It's the fact that you're prescription is written out for a certain amount and they expect you to not fill it until you run out at the rate it says to take it at. So if you're given 100mg pills and take 2 a day and they give you 60 pills they expect it to be approx. 30 days between refills. If you come in to refill before that they often can't refill even if they wanted to. That's something you'll have to ask your doctor to change for you. Re-write the prescription so you can refill.

39

I recently went from 500 mg. to 600 mg. 3 times a day and is holding things so far. My insurance covers it without a problem. With regard to how we approach pain, I agree with the previous writer. I found the book The Pain Cure very helpful.

40

nwaring, I'm not sure where you got the idea that I was trying to fill my prescription before the 30 days??

According to my patient portal, my script states 3x100 mg, 3x daily. My neuro wrote it that way because he wanted me

to gradually increase as needed/tolerated. However, the script is showing filled one time previously and the pharmacy has

that at total of 6x100 mg daily. I'm not really sure where the disconnect is but the pharmacy is not helping to fix it. If they

would say what is wrong, it would help. I made the mistake of saying the neuro could call in the script and the tech seemed to melt down on that one. This is a major chain and it is a pharmacy issue as they get a lot of complaints.