Need stronger effective pain meds!

[Jessica12974]

I have been on pain management for a little over 2 years now. I started with vicoprofen 3X day and it worked great for amost a year and my pm dr upped it to 4X a day. It was great until I started having stomach problems from the ibuprofen so I had to go off of it. Also I wanted to mention that I was given ultracet for a while along w/ the vicoprofen and it did nothing! So eventually they discontinued the ultracet. Finally I was given Norco 4X a day as needed. For a while it was okay but eventually it was not too effective anymore or did not last long enough until my next dose and I was suffering so bad! So a few months ago I explained(in tears) to my pm dr how I was suffering and had a poor quality of life and had to stop working because of the pain. I was hoping she would change my meds but she added ultram 2X a day to take in between the 4X a day Norco. And gave me Klonopin .5mg to take at night. Well the ultram helps if my pain is a 5 which is hardly ever and when I take it I get the worst migraine and I wind up needing to take migraine meds. So at my most recent appt 2 months ago(pm appt every 3 months) I explained how I was still suffering but sleeping better at night because of Klonopin and how the ultram worked for a pain level of 5 but gave me a migraine. And how the Norco lasted an hour and a half and I was still in agony because my pain is a 10+ most of the time. Well she gave me a script for 1-2 Norco as needed up to 6X a day(instead of 4X) and gave me another script for the Klonopin and the Ultram 2X but added lyrica. She said that the Lyrica should help me if it was covered by my insurance. Well it is not covered I have to pay about $80 a month which I cannot afford after paying for all of my sons asthma meds and all of my drs visits(making me broke). His meds come before mine. Anyway, I waited a while before calling the PM dr to ask if there is anything else similar to the Lyrica that they know of that might be cheaper and still have not heard back yet. I forgot to mention that I was given Neurontin 300 mg at my first pm appt but could not functon on it. It gave me a weird zombie like effect, slurring my words could not drive myself to work the next day so I never took it again. But every pm appt she always goes back to the Neurontin asking me if I tried it and they know I did so why do they insist on me taking that? Even with the phone call to the clinic about the lyrica, the nurse practitioner called me twice and said she is waiting to speak to the dr and she will get back to me. But she brought up the neurontin again and I explained again how it affected me and she said what about a lower dose? Why do they always insist on the neurontin when I bring up the fact that I am still suffering with the Norco? Especially with all the other meds that are out there? It seems to me that after 2 years that they are unwilling to give me anything stronger. I do not understand. My life is falling apart because of this pain! I am not too familiar with pain meds other than what I was already prescribed but does anybody know what is the next step after norco? What is a little stronger than norco? Is Topamax similar to Lyrica? I think that would be cheaper than Lyrica! If anyone has read this very long post and has any advice for me, Thank You!!!!!

I have tried:
Neurontin 300 mg(BAD side effects)
Ultracet 37.5 mg
Vicoprofen
Ultram 50 mg
Vicoden ES 7.5/750
Norco 10/325
Flexeril (PFD)
Skelaxin(PFD)
Valium 2mg (PFD)
Klonopin .5mg
Percocet 7.5/325 mg (kidney stones)
Effexor XR (pain) given by urogyn but had horrible side efffects
Elavil
Cymbalta
Lexapro
Paxil
Serzone
Zoloft
Atarax(unbearable could not tolerate)
Elmiron(too costly, hair fell out in chunks, stomach problems)

[Briza]

Hi Jess
Could be it's time for you to try one of the long acting meds. Many here get great relief from them...ms contin, methadone,oxycontin etc. I just started seeing a pain clinic a few months ago and was offered these right away. Granted, we are still playing with my dose of ms contin to get adequate pain relief with fewest side effects, and I'm not especially happy with it and don't know if I'm going to stay on it. Vicodin (Norco, Lortab) also doesn't seem to help my pain at all, so I have a script I'm going to fill today for Dilaudid (sp?). It's for mod-severe pain and one advantage to it is that it has not tylenol in it. Apparently longterm use of meds containing Tylenol can have bad effect on the liver. I'm hoping that it works well with few side effects.
Lyrica...I'm thinking real hard about this one, I think I asked my GP about it as an antidressant that helps with nerve pain but she gave me Celexa, because there's a generic, so much cheaper. She said that there was just some small change in the formulation to reduce one side effect older people were getting, and so now the Lyrica is being pushed, you know, because it's newer and no generic so more money because it's made by the same company. I may be completely wrong and have the med she was talking about confused with something else. All I know for sure was that she gave me generic Celexa instead of another more expensive med with no generic for that reason. Anyway, if you can't afford Lyrica, then you just can't. I'd just tell her you can't and ask if there are any other options and ask about the long acting meds in general. The pain dr explained to me that in the long run, they're safer for your body than years of Vicodin and other short acting meds containing Tylenol, especially if you are in constant pain.
Best wishes, I'm not a doctor, just throwing some ideas out there that you could discuss with your pain dr next visit.

[humpieumpumkin]

Hydromorphone...
I was just raving about it this morning. Best pain med I have ever taken. No side effects to speak of, and the pill is tiny like a birthcontril pill.

Erika

[Jessica12974]

Thank you Briza and Erika! I would love to try one of the meds you mentioned! I am hoping and praying that my pm dr will help me and give me something better at my next appt. I just do not know what else to say to her! I cried so much to her, brought my husband to my last appt thinking it would make a difference. I explained how much I cannot function and how my life sucks because of the pain. I know that I have a tolerance to the Norco because it is not working like it did in the beginning. I do not know what else to say to this dr to make her realize I need something better and more effective!

[gigi]

Hydromorphone is the same thing as Dilaudid. Neurontin and Lyrica are similar meds but some people respond better to one vs. the other. Trileptal is also similar to neurontin/lyrica but cheaper. Trileptal worked the best for me with the least side effects.

It sounds like you need something that is long acting. I've personally found that some pain specialists are resistent to those. My suggestion is to schedule an appointment with your pain specialist and specifically tell him/her that your meds aren't lasting long enough and can you try one of the long-acting narcotics. If the answer is no then try to find a new specialist.

I used methodone for quite a while with fairly good pain relief. Methodone is very inexpensive, especially when compared to some of the other long-acting pain meds. I just started on MS Contin and am having my best few days in over 18 months.

The bottom line is that you deserve to be as comfortable as possible. Have someone come to your appointment with you for support.

Good luck.
gigi

[cia]

I want to go to Briza's pain clinic. All mine would give me was Lidocaine patches and Nortriptoline which zombified me, three days for one pill. Someday I will count all the bottles of prescriptions I have filled and have been unable to take.
Jessica, have they ever tried good old fashioned Percocet for your IC pain? I see it listed for kidney stones. It is the only thing that kills my pain and allows me to function. All the other narcotics just knock me out. Hell, my blood pressure meds knock me out. I am surprised that bringing your husband didn't have an impact. Maybe because your doctor is a female. I know that when I feel I am not being heard, all I need to do is dress up the "big gun" in a business suit for full intimidation value and suddenly I have the doctor's (male) attention. There is actually a thread on here that discusses this strange phenomenon. I hope you get some relief soon, before I switched docs I was not above having a root canal in order to get pain killers for my IC.

[Briza]

[quote=cia;331447]I want to go to Briza's pain clinic. All mine would give me was Lidocaine patches and Nortriptoline which zombified me, three days for one pill. Someday I will count all the bottles of prescriptions I have filled and have been unable to take.
Jessica, have they ever tried good old fashioned Percocet for your IC painQUOTE]

Cia
I know, I was really schocked that he wanted to go straight to the long acting meds. We've had quite a few appts since March, trying to get the dosage of MS Contin worked out, and my visit this week was really strange. I brought up Percocet as a breakthrough med, since vicodin does nothing for me, and xanax instead of a muscle relaxer because they knock me out and he went off on me, telling me I only wanted to take what I wanted to try. HE was the one who brought up all these meds in the first place It was really strange. But then I ended up with the script for Dilaudid and xanax and the Dilaudid is sounding very promising. I'm going to get it filled tomrrow and am anxious to see how well it works and will post on Sunday or MOnday on how well it works,side effects,etc. It was such a strange appt I forgot to even ask him about lidocaine patches, but I saw my gyn that day, too and he gave me a script for the patches. They're about 4 x 6 inches, and I cut one into 2 pieces and have them on my hip/pelvic bones where my pain is and I put another in my undies like a panty liner. I am getting GOOD relief. I do have lidocaine gel for the vaginal area for VV, but putting one of these patches in is much easier, though more expensive. Will have to use my mail order Rx plan to make them more affordable.

Cia, I could give you his name and you could get a referral to him, but I'm in south Texas, couldn't possibly be any farther away from Boston

[cia]

I wish that I had realized that most of my pain was from my urethra before I used up all the lidocaine patches on my abdomen, which did no good. I love the "like a pantyliner" idea. I will ask for some more patches, and try that. I just started putting heat between my legs instead of just on my abdomen and it is amazing what a difference it makes. When you start out with such overwhelming pain it is so hard to pinpoint the source. I have been at this for 14 years now and while sometimes my whole system is malfunctioning, I just realized two months ago that often most of my pain is urethral. I could have saved myself so much agony if I was treating the right spot

[Briza]

Cia
I first put one whole patch on my pelvic area, but I think the bladder is just too far below the surface to get relief. So I moved that one to my undies to do the panty liner thing. I could probably get by with just half a patch there, if only my VV is bothering me, but my vulvodynia symptoms cover a much larger area, from top of pubic hairline all the way to my bum. I'm even feeling relief there right now, below the pubic hair. That's a place I would never have thought to put the gel, and it would probably be kinda messy, you know?
I'm pretty thin, I think that's why I'm getting such good relief with these patches on my lower back, hip bone area.
When I was in the dx process (1.5 yrs) I had NO idea the pain was originating from my bladder, so you're not alone. There are so many symptoms it's hard to pinpoint where it is all coming from sometimes. But after these few years of symptoms, I can pinpoint where the pain is originating, and what med I need to take to take care of that symptom. Then there are the times I need ALL of my meds!!
Best wishes, let me know how your new panty liners work out !
Bri

[Myca]

I have been thinking of going to a pain clinic this week. But I am curious as to what they do there. Do they focus more on natural breathing techniques and try to get you off the pain killers or do they prescribe those too? Right now I am taking a rather high does of Oxycodone, one at night for pain. But they wake me up so I can't sleep so I need something that knocks me out but isn't as dependent as Ambien which does nothing for my pain anyway. Do you think they help with stuff like that?

[cia]

Myca:
My pain clinic does not prescribe narcotics under any circumstance, they do more recommending, go to the PT and get a T.E.N.S, try this antidepressant, try this antihistamine. I have already tried just about everything so they didn't have too many ideas for me. Briza's pain clinic is totally different. I think it depends on the hospital they are affiliated with. The important thing my pain clinic did was to refer me to my new Urogyn for stronger treatment, so I did get something out of the experience.

Briza I am loving the new pantyliner. 2 percocet, 2 clonapine and a pantyliner got me through my graduation ceremony, which was out in a field with the nearest bathroom at least an eighth of a mile away. I sat on stage (for an award) so there was no way to escape to make a run for it. Other than that I wear them at night, very helpful. Thanks for sharing the idea.

[mary124]

Myca;
You were thinking about going to a pain clinic? They are all different in treatments, some give medications; some don't. I know my give meds, nerve blocks, etc. For me they were going to do nerve blocks but they can't due to me being high risk (I would have to get off my coumadin-which is a blood thinner and my Cardio won't let me) so the only thing that the PM can do for me is pain medicines and the URO does is Hydro's every 6-8 months for pain when I get really in bad shape. Good luck to you with whatever you do.

[Jessica12974]

I saw the pm dr today and told her that I am in agony! I told her that I have been suffering and had to go to the ER to be treated the other night. Turns out it is a bladder infection but even before that I was suffering as it was. Well I have been taking 6 Norco a day and suffering in between because it only lasted 1-1 1/2 hrs.I even tried taking 2 Norcos like she recommended but still in pain. So she gave me scripts for this: MS Contin 15 mg 3 X, 3 Norco(instead of 6),Topamax 25 mg 2X. Well I took the 15 mg ms contin at 5:00 this afternoon, and Topamax at 8:00pm, and I had to take a Norco at 9:00 pm already because I am in pain! How disappointing! I left the pain clinic so happy thinking this would be it! The answer to my prayers and end of the agony! But I have read on here that most are on 30 or 60 mg of ms contin 3-4 X a day. So at such a low dose of 15mg no wonder why I am in pain! Will it get better? It was hell getting her to change my scripts so I doubt she will up the dose anytime soon. Oh and I realize what they say is true about the side effects of Topamax because I am feeling it now! It is getting harder to finish typing this! I do not like the way I am feeling from it! Will it get better? I hope the benefits outweigh the bad side effects! I figured that weight loss would be a good side effect! I am actually having more frequency from it also, anyone have the same reaction? I hope I am not too tired in the morning I have to get up early for work! I should have taken this on my day off! I am so tired of this pain! I was hoping that my pain meds would help so that I could go back to work full time instead of the 15 hrs I am working now which is hard to do in so much pain! I just went back to work after being off for a while. My boss has no idea that I have IC and gets annoyed because I am always in the bathroom or constantly running in the back to take meds. I want to approach her to let her know that there is a reason why I am always in the bathroom. I do not want the whole company knowing my business. How do others handle this?

[Jessica12974]

I am feeling sick to my stomach from the Topamax.Major nausea! I do not feel any pain right now but major frequency! I will be up all night I guess! I can add this to the list of meds I cannot take!

[BrittanysDance]

Hi,

I'm new here and havent posted but was just reading your post Jessica and wanted to let you know the Topamax side effects WILL go away. I'm on topamax for migraines 25 mg 3 x daily and my side effects went away after about a month. You have to titrate up slowly on it - what dose does your doctor have you on right now? You should be on 25 mg for about 3 weeks then titrate up to 50 mg...then 75 mg and no more than 100 mg, this was according to my neurologist, who is the doctor who officially diagnosis and deals with migraines, not a pain management specialist. I'm currently on 75 mg and it works great. I also have another migraine med for when the topamax doesnt work that I take when a migraine hits. The key to topamax is slow titration. Side effects will go away though - it just takes time and patience. Key is to take it the same time every day no matter what, dont miss your dosing schedule at all.

The MS Contin - 15 mg 3 x daily is a pretty high dose actually and it can take time to kick in given you were on other meds, but it has a short life I think. Its supposed to last 12 hours, but it never lasted more than 5-6 hrs for me when I was on it. It takes a while to get the other meds out of your system and to "transfer" over. Be sure to drink lots of water though as MS Contin is very constipating. I'm on a morphine drug as well (Kadian) that is supposed to be a 24 hour pain control med, it only has a last-life of about 6-8 hrs, but I can only take 30 mg due to having severe IBS-C, morphine constipates so badly as do most narcotics. Constipation also can cause and trigger migraines and your IC to flare or spasms in the bladder and pelvic region.

I hope you feel better soon.

Brittney

Guess its time to introduce myself to everyone...so..hello! I've had IC for 11 years and alot of other conditions too. Thanks for having me.