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Help! Need Insight - Ritalin Issues


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#1 Amazon135

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Posted 02 April 2010 - 11:51 AM

Hi everyone,

I was diagnosed with light-moderate N about a year and a half ago. Constant exhaustion and REM malfunction are only symptoms - no cataplexy, hallucinations, etc…

My treatment is 10mg Ritalin, 3x per day. With the Ritalin I can survive at a fairly normal level (still need naps sometimes, etc..), but if I am without it I cannot drive, work on a computer, or do anything that is non-standing and doesn't involve direct stimulation for more than 3-5 minutes without falling asleep.

However, with all of the laws that have been put into place (because of the idiots that sell it on the street and ruin it for the rest of us), I have to march into my Dr.'s office to pick up an original ink prescription that I can submit in-person to the pharmacy. I'm sure many of you are familiar with this. For medications that are regulated the pharmacy cannot legally accept a faxed/phoned in prescription, and cannot issue the prescription with refills on it (these specific items may only be particular to Florida - I'm not sure if some restrictions vary from state to state).

My Dr. will only prescribe me 90 pills at a time (30 days). This doesn't sound so bad, except that I work 30 miles away from where I live, and I can't take 1/2 a day off work every month (6 days/year) to go fetch my prescription. I would change Dr.s to someone closer to my place of employment, but the Dr. I have now if one of the few I've had that is sympathetic to Ns and is knowledgeable about treatments. Is anyone taking - or has anyone out there heard anything about - any other daytime stimulants that aren't street drugs of abuse and, thus, aren't subject to these kinds of laws?

I've been looking into changing medications anyway, as I am building a tolerance to the Ritalin, I don't like having to remember to take it 3+ times/day (my N can make me forgetful when the medication starts to wear off) because often will miss a dose every day or two, and when I miss a dose or two I actually get symptoms of depression on top of withdrawals and the EDS coming back. Luckily, my husband is a Ph.D. in Physiology and a medical researcher - and was able to explain to me that the depression symptoms weren't something to worry about and made sense due to the drop in dopamine levels I may experience when I don't take it (due to my unavoidable addiction to it).

I'm on Aetna HMO, and they just approved coverage for Provigil and Nuvigil starting 1/1/2010. I understand, at least for Provigil, that the dose is only once/day and is not as addictive as the Class II amphetamines, like Ritalin, and is not as highly regulated. I can't get very much straight info from web research to confirm this, though. If you are taking one of these, can you reply and let me know if my understanding of it is correct, from what you've experienced?

Also, if you are taking a daytime RX that seems to be what I am looking for, and also taking Xyrem, please let me know how that is working for you. I am considering asking my Dr. about adding Xyrem to my treatment and it would be helpful to know what other people have experienced in terms of what daytime drugs tend to work well with the Xyrem.

I have an appt with my Dr. next Friday to review my treatment, and would like to go armed with as much info as possible.<br style="">

Any insight would be very helpful.

#2 vidar

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Posted 02 April 2010 - 02:31 PM

I recommend you try Nuvigil over provigil. Some doctors are still writing for provigil. This is fine if someone has been on it, it works well for them, they are little side effects etc. But, Nuvigil seems to have less side effects, more consistency in how one feels, and seems to be getting better results in people that have even had little benefit from provigil (less crashing and fewer side effects allow higher dosage of the more active ingredient in provigil). Provigil also makes me dumb, lol, where as Nuvigil does not really seem to have that effect.

Other than that, the only thing you may be able to get is (at least I can in WI) if he gives you two prescriptions both dated on the date of you appointment. He then labels one "fill on [date one month or 30 days from the day the script was written]."

#3 sleepdeprivedinmich

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Posted 02 April 2010 - 03:08 PM

I am also on Ritalin currently (in Michigan) and I have to go through the whole driving to the doctor's office every month to get a written script also.

When I was first diagnosed I tried Nuvigil with a free month supply coupon that my sleep Doc gave me. I really liked it and had seen a lot of improvement with is but my insurance refuses to cover it, or Provigil for that matter. Nuvigil is a one a day pill and Provigil is similar to ritalin and they wanted me to take more than one pill a day. The only side effect I had with Nuvigil was that even though I took it at 6 am, I sometimes still had trouble falling asleep at 11 pm. But I wish you all the luck! I'd say it's worth a try. I really hate being on Ritalin in comparison with the way I felt on Nuvigil.

Oh! Also Provigil and Nuvigil both reduce the effectiveness of birth control, which is something you should be aware of. Not all doctors remember to tell patients that!

#4 Tracer

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Posted 02 April 2010 - 08:13 PM

Hi everyone,

I was diagnosed with light-moderate N about a year and a half ago. Constant exhaustion and REM malfunction are only symptoms - no cataplexy, hallucinations, etc…

My treatment is 10mg Ritalin, 3x per day. With the Ritalin I can survive at a fairly normal level (still need naps sometimes, etc..), but if I am without it I cannot drive, work on a computer, or do anything that is non-standing and doesn't involve direct stimulation for more than 3-5 minutes without falling asleep.

However, with all of the laws that have been put into place (because of the idiots that sell it on the street and ruin it for the rest of us), I have to march into my Dr.'s office to pick up an original ink prescription that I can submit in-person to the pharmacy. I'm sure many of you are familiar with this. For medications that are regulated the pharmacy cannot legally accept a faxed/phoned in prescription, and cannot issue the prescription with refills on it (these specific items may only be particular to Florida - I'm not sure if some restrictions vary from state to state).

My Dr. will only prescribe me 90 pills at a time (30 days). This doesn't sound so bad, except that I work 30 miles away from where I live, and I can't take 1/2 a day off work every month (6 days/year) to go fetch my prescription. I would change Dr.s to someone closer to my place of employment, but the Dr. I have now if one of the few I've had that is sympathetic to Ns and is knowledgeable about treatments. Is anyone taking - or has anyone out there heard anything about - any other daytime stimulants that aren't street drugs of abuse and, thus, aren't subject to these kinds of laws?

I've been looking into changing medications anyway, as I am building a tolerance to the Ritalin, I don't like having to remember to take it 3+ times/day (my N can make me forgetful when the medication starts to wear off) because often will miss a dose every day or two, and when I miss a dose or two I actually get symptoms of depression on top of withdrawals and the EDS coming back. Luckily, my husband is a Ph.D. in Physiology and a medical researcher - and was able to explain to me that the depression symptoms weren't something to worry about and made sense due to the drop in dopamine levels I may experience when I don't take it (due to my unavoidable addiction to it).

I'm on Aetna HMO, and they just approved coverage for Provigil and Nuvigil starting 1/1/2010. I understand, at least for Provigil, that the dose is only once/day and is not as addictive as the Class II amphetamines, like Ritalin, and is not as highly regulated. I can't get very much straight info from web research to confirm this, though. If you are taking one of these, can you reply and let me know if my understanding of it is correct, from what you've experienced?

Also, if you are taking a daytime RX that seems to be what I am looking for, and also taking Xyrem, please let me know how that is working for you. I am considering asking my Dr. about adding Xyrem to my treatment and it would be helpful to know what other people have experienced in terms of what daytime drugs tend to work well with the Xyrem.

I have an appt with my Dr. next Friday to review my treatment, and would like to go armed with as much info as possible.<br style="">

Any insight would be very helpful.



Hello there. Sorry to hear you are having such a hard time. Dealing with all this is frustrating. Does your prescription plan have a mail order plan? If it does you may want to call them and see if they will cover the medication you are being prescribed and get it in the 90 day dose, mailed to your home. It's ususally cheaper. I'm on Nuvigil and it's expensive. But getting it through the mail order pharmacy will save me $100 per 90 day supply. Plus I get it mailed right to my house. So check that out. A warning about Nuvigil. Most insurance companies will deny it. You have to get the doctor to write something to them and explain why you need it and it takes some time but eventually I got mine.
best wishes,
Tracer

#5 drago

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Posted 04 April 2010 - 07:56 PM

My Dr. will only prescribe me 90 pills at a time (30 days). This doesn't sound so bad, except that I work 30 miles away from where I live, and I can't take 1/2 a day off work every month (6 days/year) to go fetch my prescription. I would change Dr.s to someone closer to my place of employment, but the Dr. I have now if one of the few I've had that is sympathetic to Ns and is knowledgeable about treatments. Is anyone taking - or has anyone out there heard anything about - any other daytime stimulants that aren't street drugs of abuse and, thus, aren't subject to these kinds of laws?


I am not on ritalin, but adderal. I have the same issue, especially because after I was diagnosed in Maine, I lived for 2 months in MA, then 3 in AK, then moved to NC for possibly a year or more. I didn't want to waste time and money on a doctor in MA and AK, knowing I wouldn't be long, so I had to work with my doc in ME to work it out.

It is a pain in the @$#! to be on a stimulant, but any stimulant that you take (besides caffeine) will be a restricted/controlled substance. Provigil and Nuvigil, apparently, are also being sold on the street for "street drugs..." I believe Xyrem is not considered a stimulant, but I think (I don't take it) that the restrictions on Xyrem/working with Xyrem is FAR more complicated.

Have you spoken with your doctor about having the prescription mailed to your house? I had to call my doctor a week before filling my prescription and they would mail me the prescription. I wanted it to be mailed directly to the pharmacy, but apparently you can't do that - so it was just mailed to me and I'd take it in to the pharmacy to be filled.

drago

#6 Andromeda1528

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Posted 06 April 2010 - 11:26 AM

A few thoughts:
First, you are taking a relatively low dose of Ritalin - if you find it's not working, you could ask your doc to increase it. I'd also ask him about Concerta, which is the long acting form of Ritalin, so you don't have to keep taking pills constantly throughout the day.
Have you discussed with your doctor the problem of coming into the office to get your prescriptions every month? I don't know the laws in your state, but one of my doctors was able to send me my prescriptions in the mail when I lived in pennslyvania because that was okay with their laws (my doctor was in another state). Perhaps your doctor could send you the prescription each month in the mail? Or, depending again on the laws in your state, perhaps your doc could fax the prescription to the pharmacy each month? Talk with him about it.
Here's another option, although not exactly ideal: you could ask your regular doctor if they could prescribe it for you, provided that you show all the paperwork from your docs on what you take. I've had two regular general practice doctors prescribe ritalin for me for narcolepsy in the past for various reasons.
And I think all the main narcolepsy prescriptions are highly regulated - although none as much as ritalin/concerta and xyrem. however, with provigil i always had to pick it up every month as well.

Good luck!
Andromeda
nisfornarcolepsy.com (my narcolepsy blog)