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05/16/2012 08:57 PM

So are my days on pain meds numbered?(page 5)

tortoisegirl
tortoisegirlPosts: 3243
Group Leader

Yeah it makes no sense to me but the message through the nurse from the doctor is that they think it'll take me months to get to zero. I left two messages in the back & forth that I'm at half my meds (less than 3 weeks), so I'd say more like 6 weeks for the rest. They did a really weird conversion which made it look like I'm on even more meds than I am on. The doctor told me in the appointment I could get off them all in a month so this is now two issues he has gone back on.

Makes me lose trust in him. It seems they are estimating the insurance will take less than the few months they think it'll take me to get off the meds? Because of that it makes me really question their ability to do the insurance appeals. Plus I was never 100% confident in the surgical ability as they wouldn't tell me how many headache patients they do, only that they have good stats for the stim overall. They even told me they mostly do this for back pain, which is FDA approved, so that isn't as big of a deal insurance wise.

They would mostly have to substantiate that the cost is worth it vs. the current costs. For me they'd have to prove the procedure isn't investigational, would likely help, and the cost is worth it. The other consideration is that they are asking for confirmation from my doctor (who I'm not telling I got a head start) and the need for the appointments for pre-trial stuff which we couldn't do until after the insurance paperwork went through, etc. I don't think there is any good med option for me to try unless they can switch me from long acting to short acting pain meds, but between that being undesirable for a doctor and that I didn't even confirm with the nerve stim doctor that I could take them up until the trial.

I am thinking not, as the only way the number they gave me works of what equivalent dose I'm on is if you add those in. I do really agree with the wanting to know if its an option. I just don't see that logical path working out and I'm a wuss with the pain now since I have a treatment that works somewhat. I could see if I spent 6 months off my meds to find out insurance won't cover it I may be more upset than cutting my loses now and putting this on the back burner before everything lines up better. I just have a bad feeling about this between everything. This also has made me realize that my expectations with the pain meds may be a little unrealistic (to want to increase them to try to get back to where I was a couple years ago).

For some reason I'm still doing "good"...ie. I'm still pretty low on my meds and doing only on the bad end of my spectrum. I have my appointment tomorrow to talk to my doctor but I'd say at this point I'm 90% sure I'll throw in the towel. I've actually come out of this ahead somewhat as I can go back up on my meds and they will work better. I also know that I can do at least a partial taper and survive. At least I'm used to frustration by now. Best wishes.

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05/17/2012 09:28 AM
MaryR
MaryR  
Posts: 4121
Group Leader

You may be right to throw in the towel, but I might want to meet face to face with the doctor again to talk about these concerns before you do. I have had situations before where nurses did not always deliver messages exactly as they were supposed to (the nurse no longer works there thankfully) and I got some tremendously BAD advice given under the doctor's name. When I actually talked to him about it later I found out that the questions that I called in, she never actually asked him, she just made up her own answers and called me back as if that is what he said.

I don't think this is a common occurrence, but if the doctor is saying one thing in person and something else through the nurse, I might want to meet with the doctor again and find out if he goes back to saying his original statements and if he knows what his nurse is saying.

I am glad that for whatever reason your headache is not any worse than it is. It may be that you will benefit from doing something like this periodically to reset your tolerance level a bit so that things will be more effective again.


05/17/2012 10:36 AM
leitheij
leitheij  
Posts: 115
Member

I think Mary has a good point. I would request another appointment with the doctor just to cover all bases before thinking of heading in another direction. I am confused as to why he won't say how many patients he has successfully treated. When I met with a Dr. Jeffrey Brown of Neurological Surgery, P.C. in Long Island, New York he suggested suborpital lead stimulator as a possibility for my facial pain (He preferred that over nerve decompression). He mentioned he had around 50 or so patients he treated. And if my memory serves me I believe he was going to give me a few names of past patients to call. (This was back in February of this year so I'm trying to remember!)

This might be prohibited but have you ever thought of taking a little hand held tape recorder to your appointments? (I'm not sure if you are going to appointments by yourself or not). I have done this before. It was too difficult for me to take notes and listen at the same time. The recorder I have allows me to upload it to my computer. Keep us posted..


05/17/2012 10:14 PM
tortoisegirl
tortoisegirlPosts: 3243
Group Leader

If it was just the phone vs. in person information inconsistencies I'd agree, but I haven't had a good level of comfort with them from the start. My confidence level in them doing this procedure for headache is one of the main reasons...it doesn't seem worth it to me to try it with a doctor who doesn't have the experience as the success rate will be lower (and I won't be willing to try it again, nor would insurance likely cover two trials). Its bad if they couldn't give me an answer on about how many headache patients they've seen for this and every example they gave me about it was for stim for pain besides headache (back and arm).

Usually with something like this I would have asked for written instructions but they repeated themselves several times and I took notes. Only thing I can think is that they meant 50% for the psych consult this whole time, but like a lot of other discussion topics, it wasn't clear. We had a similar issue when they were saying that doing the front leads for the trial wasn't guaranteed, but when I got to the bottom of it they meant that only for the possibility my pain location would change. Hmm. I usually don't have a productive enough of a visit to use a recorder. It would be nice to have "proof" of statements sometimes, but I think it would look badly upon me to use it that way. For personal use I've heard of patients using a recorder often (same with how its a good idea to bring a loved one with you to have that backup comprehension).

However, I have another change of plans. I had a really good appointment today with the PA I see at the pain clinic where I get my meds. He gave me the short acting pain meds back thank goodness. I didn't get drug tested so I didn't have to mention I had already tapered down. I've been tapering back up though. When he read the letter from the doctor I saw about the nerve stim he was surprised the other PA referred me out as they do nerve stim procedures at their clinic too. My goodness isn't that a mess. The letter they sent even had errors. They sure don't have their act together.

I don't get why they would refer me out to someone who has no more experience with headache stim procedures then they do, but maybe there is something I'm missing. The other PA didn't mention they did them in house. Its odd sometimes how out of touch things can get. I explained my lack of confidence about the clinic for the nerve stim to my PA and he seemed to agree with me about it. I am just so fed up with everything together about it I don't even want to give them another appointment.

Discussing the 0% vs. 50% med dose at which to start the insurance paperwork isn't going to change my mind about my comfort level with moving forward. I guess I should have looked a bit bigger picture from the beginning instead of just moving right ahead with it (at least mentally and a bit with the med taper). Another thing is they completely messed up the calculation of my total pain med dose (they said it was double-I confirmed with my PA today).

The PA is having me see the doctor at the clinic about it. I've actually never even seen the doctor there. He thinks the doctor will first try some nerve blocks in my forehead (I've only had occipital nerve blocks, trigger point injections in the neck/shoulders, and Botox). Makes a lot of since to work my way up in the invasiveness. As my main goal is not to be closing any doors for treatment which open to me, I think its very reasonable to move forward with seeing the doctor in the clinic I already go to and tabling the other clinic's nerve stim process.

If they can do the nerve stim trial for me in house it would have to go so much smoother to only be working with them for stuff like the med taper (and as I already have built a relationship and have that trust/comfort). Another good thing is they are willing to help me with the fibro treatment so I don't have to find another rheumy. All I did was ask about what meds another doctor would be allowed to prescribe me (wasn't sure if my contract is only applicable to narcotics--it is).

He said since I had already seen two rheumatologists for the diagnosis and since they were out of treatment ideas, it may not be necessary/helpful to see another one. He named a couple of the common fibro meds so of course Savella came up, which was on my short list as something I haven't tried. Got the taper pack and a rx. Yay. I might keep on the track of having them treat more of my pain conditions...I had been so focused on the pain meds for the headache I hadn't thought to place the burden on them to be treating me for multiple conditions, but as he put it today, its all pain, so its not as separate as I thought. I'm used to doctors not being able to handle more than one medical issue an appointment!

Glad I have a plan to move forward that doesn't involve closing the door on the nerve stim trial just yet, or going without the pain meds (which are working better now that I had a break to lessen my tolerance). I have a lot more confidence that working with my pain clinic for the potential of a nerve stim trial will be a better plan. Plus, its in addition to the pain meds they have me on, the prospect of new types of nerve blocks, and preventative meds like Savella which I haven't tried.

In other news I think the helpfulness of the Clonidine has run its course. I'll keep what I have left in my medicine cabinet (actually its a whole drawer full now, and thats just the meds I'm likely to want to keep on hnad) to try if I get a bad episode, but I was kinda expecting this with my tract record of meds helping only a short time. I'd try a higher dose but its too sedating.

Pain is back up again (fluke?) so I'm happy to be tapering back up on the meds (and to have something to take as needed and trialing the Savella which could potentially help the headache and/or fibro). I do see some positives in this such as resetting some tolerance to the pain meds and knowing that I can taper (at least partially) successfully. The thought of having to go without pain meds (or endure bad withdrawal) had been a fear of mine, but not so much anymore. Ok I think thats enough news for one day! Best wishes.


05/18/2012 09:27 AM
MaryR
MaryR  
Posts: 4121
Group Leader

Wow, I too am shocked that they referred you out for something that they do themselves...especially since the pain clinic is more likely to have other headache patients and know what to do with them. So it sounds like you are on the right track now. It is even better that they are willing to help treat the fibro (with meds that might happen to work on the headache!) while they are at it. Fewer doctor's appointments when you are trying to hold down a job is always good. And working with people that you already have a relationship with and don't have to have weird phone calls back and forth and strange communication problems where they seem to be changing their minds all the time and leaving you in uncertainty is definitely good.

05/18/2012 06:24 PM
leitheij
leitheij  
Posts: 115
Member

That's a good idea about the nerve blocks. I'm guessing they will try like frontal (supraorbital/supratrochlea) and temporal? I have had only temporary blocks in those regions (just lidocaine). I didn't have absolute faith in the anesthesiologist who had conducted them so I didn't want to go further with steroid nerve blocks. But, I'd like to go forward with them with a different pain specialist. Through networking online I was referred to someone about an hour from me. Anyway, Maybe you will get some relief from them Smile

05/18/2012 09:06 PM
tortoisegirl
tortoisegirlPosts: 3243
Group Leader

Well they are actually both pain clinics and I don't know if one sees more headache patients than others (except the one I go to regularly was recommended by my neuro who says he refers a lot of his NDPH patients there who have failed other treatments as they are more pro pain meds there than most other places in town). But yeah there was some major miscommunication there unless there is something I'm missing of why i'd be referred. Best guess is the other PA who referred me said she worked there for awhile and specifically knew they had done the front leads and maybe she didn't know they would do them here too?

Yes I think supraorbital and temporal is what he said (but it'll depend if the doctor would actually think I'm a candidate). All I took out of it was forehead, ie. something I haven't tried that sounds a lot more likely to help than anything in the neck (as I've never responded to anything there). I get a lot of neck issues but best I can tell its the head pain causing me to tense my neck.

I'm really "happy" to try them as I have very good coverage for them right now (no cost to me from they way I read the benefits), I had no side effects with the occipital block with the anesthetic & steroid under conscious sedation, and its forehead, which has never been offered to me.

I've never been all that excited about the prospect of the nerve stim procedure besides that its something I haven't tried and Dr. Reed has some good stats. The actual process/surgery, having an implanted device, need for future surgery, etc, isn't too high on my list.

I guess the way I see it is that the pain meds have worked really well for me in the past so with the right tweaking it seems that is the "easiest" way to get me back up into that relief range where I am most functional. Using a different doctor however I don't think my chances will be as good with the stim...from what I gather it is one of those things that its not the same exact procedure on different parts of the body (practice with headache patients should improve the stats).

Having confidence in the doctor treating you is huge. If I had to name one reason I'm not moving forward with the other doctor with the nerve stim, thats it! Nerve blocks are a pretty easy thing to try, but honestly I haven't heard many folks with NDPH getting relief from them. Even if they do work its a pretty temporary thing from what I understand. Starting the Savella tonight. Oh joy. Best wishes.


05/19/2012 01:10 PM
tortoisegirl
tortoisegirlPosts: 3243
Group Leader

Savella update: The nausea is very bad on the 12.5 mg (last night and this morning, even with food). Not sure if I'll be trying a third dose or not as I don't think I can tolerate waiting to see if it'll subside. Best wishes.

05/19/2012 05:16 PM
leitheij
leitheij  
Posts: 115
Member

Oh man..that stinks! I had that same reaction when I tried cymbalta. No matter if I took it in the morning with food or evening with food I still woke up in the middle of the night with nausea.

Have you thought of asking your doctor for an anti-nausea to take before? Like Reglan or Zofran? Well..maybe you don't want to add more pills to the mix.. Smile Anyway, I don't blame you for stopping.. nausea is the worst!


05/19/2012 06:56 PM
tortoisegirl
tortoisegirlPosts: 3243
Group Leader

Its weird as I did ok on Cymbalta--no side effects, but had an issue with the brain zaps with the withdrawal and took 6 weeks to get off of it. Yup I have nausea meds as I get a lot of it unfortunately. Ever since my headache I get some random episodes, plus the attacks I get with the bacterial overgrowth, and motion sickness. No idea what I would do a lot of the times without it. I can actually deal with pain pretty ok, but not nausea.

I mostly take Zofran as its quick acting but sometimes I take Phenergen since it works better (but its been really sedating ever since I've been on Methadone so thats usually only if I'm home and the Zofran didn't work).

I took the first Savella dose right before bed last night and slept through the night just fine. As soon as I got out of bed this morning (actually 12 hours later hehe) it was bad though. Odd as the med should have been pretty worn off by then. It went away pretty quickly so I took another Savella dose. Once it kicked in a couple hours later I was bad off again and took another Zofran. Kinda struggled for an hour (hunched over the couch with my bowl...what a pretty sight) and thats when I was pretty sure this wasn't going to work.

Since then I've only had really mild nausea...and the Zofran has probably worn off. Now I'm wondering if I should continue and try another dose tonight since I'm off work tomorrow since its Sunday. I'd think of taking Phenergen with it but since I'm a long sleeper on the weekends it would be worn off by the time I got up anyways. I might as well as the nausea probably can't get any worse than it was earlier today (as it would be pill 3 and often something like this quickly subsides).

If the Zofran controlled the nausea and then it went away it within a week or whatever it wouldn't be an issue for me. I'd go through a lot of Zofran though as I often need two, and I could need that a few times a day (and I only get 12 a month although I have some saved up). I have one of those titration pack but I looked up that these pills are probably safe to cut so I could stay on this 12.5mg dose for awhile if needed. I actually got prescribed the 50mg ones (pack goes from 12.5 to 25 to 50) to take twice a day. Thanks! Best wishes.

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