Have Meds, Like To Travel

[tea4one]

I was born to travel, but I also take methadone for my WED because I have gone through the dopamine agonists (experienced augmentation and impulse control disorders). I've also gone through gapapentin, carbamazepine, L-dopa, and clonazepam. I had to go out of state, to Johns Hopkins, in order to get proper attention for my moderate/severe WED. Lately, I have been getting depressed at the thought of being unable to travel for very long because of the 30 day restriction placed on meds like methadone. Also, like everyone else here, I get slightly anxious at the thought of having to go without meds for any more than a day or two. A few weeks ago, I went without methadone for 4 days because I didn't call for the refill soon enough, and I nearly had to drop out of the classes I'm in. So, my question - Is it possible to travel internationally for extended periods (ie 1 month or more at a time) while taking meds like methadone. Thank you for taking the time to read this, and thank you for any helpful advice you may have. I am very grateful to have this forum where people understand what I am going through.

[ViewsAskew]

It's tough when you get to this class of meds...and you have to go out of state (I'm in the same position).

I can only tell you what I do. It's not legal, so please do not do this without careful thought. If I thought I was an addict, I'd question my behavior. But, I'm not. I'm simply dependent on a medicine that I have to have to function properly, just like insulin for a diabetic. Because I sometimes travel for work and can't get a script on time, because pharmacies have refused to fill my perfectly valid scripts until they talk to the doctor for one reason or another, because I've had two doctors refuse to write a script for me with NO notice to me, so I was stuck without, I've learned that I have to take measures to ensure I'm never in a difficult position.

I need 25 mg per day of methadone on the 10 worst days of the month. The rest of the days, I need 20. And, everyone once in awhile, if things are really good, I can use 15 for a day. And, if I use pramipexole 5-8 days a month (spread out carefully so I do NOT augment again), I need only 0-10 mg of methadone on those days. Of course, as I did last month, I sometimes have bad months and need the full 25 everyday. And, sometimes I can't use pramipexole. But, when asked how much I take, I tell any doctor that I need 25 mg every day - 5 mg in the afternoon, 5 in the mid evening, and 15 before bed. I also try to refill mine on day 31 or 32 each month, instead of day 30, so it shows I do not refill early and have a pattern of not using quite all of it - the doc just doesn't know that I could sometimes make it day 33 or 34.

Given me being careful and things going well, I can squirrel away somewhere between a few and quite a few tabs a month. Over a long time - I'd guess 2 years, I managed to accumulate enough to keep me covered for about 35 days if I couldn't refill a script. I could have managed more, but I had a few times I didn't get the new script in time and had to dig into the stash - a few here, a few there. It was a good thing I kept as many as I did because last year my doctor "fired" me and I had NO scripts to fill and no doctor to see. I made an appointment with Dr Buchfuhrer, who's been my doctor before, but it's just easier to have a local doc. Because of flights, work, and his schedule, it was over a month before I could get to California - I used my ENTIRE stash by the time I got there. So, I was very glad to have had it. And, I immediately started building it again. I'm up to 11 extra days now. But, that would be enough to allow me to travel for 40 days if I needed to.

If you do travel, make sure you are very careful where you store your meds. Lost luggage is a huge problem. But, one year when out of the country, I had my purse stolen. I didn't put my meds in my suitcase to be safe and this meant I had none. I wasn't leaving for another 3 days. Fortunately, then I was taking pramipexole and I convinced a pharmacist to sell me 3 days worth. Now I take extra meds in case and I keep some on my person and some in my suitcase or briefcase.

My guess is that some doctors (not many, but a few) would actually help create a surplus if they trusted the patient and knew the situation, such as traveling overseas for over a month at a time. And, if they wouldn't there are ways around it as I've mentioned.

Not sure if you could do what I do - use a DA just a few times a month - but it really does help build that surplus. I can't use a DA on subsequent days, but I can use one every 3rd day or so. Never more than 8-9 days a month. It really helps me knock out the worst of the methadone side effects - being excessively sleepy and sleeping 12-14 hours a day. I do have many side effects from pramipexole, including rapid augmentation (originally it only took about a week), severe mood destabilization, and food control issues. But, I find that one dose is manageable. I do get grumpy and my mood suffers, but it's not like when I take it two days in a row and I want to commit suicide!

In many countries it would be impossible to get methadone, though in some countries you could. I'd not count on that, though.

Oh - does your state allow you to have multiple scripts of methadone? The FDA allows it, but not all states do. I live in a state that does. I can't fill more than one at a time, but the doc can write them. The one to be filled second has to include something like, "Not to be filled until [date 30 days from day written]". If your state allowed this, you could potentially have someone fill it for you and express mail it to you. Of course, you'd have to know if the country you were in would fill it - my guess is that many (maybe all) would not.

[Polar Bear]

I also work on having a stash.
I use ropinerole (a DA) supplemented with Tramadol and/or codeine.
My codeine 30/500 is actually prescribed for neck pain. I still have the neck pain but to a lesser degree. However, I still request the codeine every 28 days.
I do not have a stash of tramadol but do have quite a stash of codeine.
Oh... and once my dr issued duplicate prescriptions and I played dumb, and the pharmacist didn't query it.
I would just have said.... oh, it must be for two months ????
After 28 days when I reordered my prescriptions I expected the health centre to question it, but nothing was said.

When I travel I am neurotic about the possibility of losing medication.
Last trip I had a supply in my husband's luggage, in my own luggage, and in my purse.
Actually, I wonder if I had been stopped at customs what would have happened with having so much more than I need.
Because of packaging taking up space I always decant pills into the little brown plastic bottles. But always have the boxes with the labels on them when travelling.

It's possible I am breaking some sorts of law.... this is what WED drives us to do to make sure we are prepared and ahead of any symptoms.

[tea4one]

Thank you for your responses. I suppose I'll attempt to set some back as well. Also, I wondered about taking a DA in the meantime if I were to run out. I may have some requip, but I augment quickly and experience strange impulsive behaviors with the DA's, as so many others do. I understand your frustration about doctors not willing to help. I went to my local doc recently to try and get just a few days worth of methadone to cover me. He seemed appalled that I was taking methadone (so many docs do not understand the pain aspect of WED), and would not prescribe anything but a DA even though he knew I was being treated by Dr. Earley at Johns Hopkins, in Baltimore for WED. He told me that doctors are "flagged" by DEA whenever they prescribe meds like methadone. Essentially, he doesn't want the attention from the DEA. Where does that leave the rest of us who are NOT drug seeking!? I understand your frustration ViewsAskew. Thank you for sharing your experiences.
I'll try not to let it get me down.

[ViewsAskew]

Thank you for your responses. I suppose I'll attempt to set some back as well. Also, I wondered about taking a DA in the meantime if I were to run out. I may have some requip, but I augment quickly and experience strange impulsive behaviors with the DA's, as so many others do. I understand your frustration about doctors not willing to help. I went to my local doc recently to try and get just a few days worth of methadone to cover me. He seemed appalled that I was taking methadone (so many docs do not understand the pain aspect of WED), and would not prescribe anything but a DA even though he knew I was being treated by Dr. Earley at Johns Hopkins, in Baltimore for WED. He told me that doctors are "flagged" by DEA whenever they prescribe meds like methadone. Essentially, he doesn't want the attention from the DEA. Where does that leave the rest of us who are NOT drug seeking!? I understand your frustration ViewsAskew. Thank you for sharing your experiences.
I'll try not to let it get me down.

I also augment really fast, but I can take it here and there. If I do a couple days in a row, I have many more problems. But, one dose at night - that doesn't make me crazy with side effects. I still don't like it and I still have some of the symptoms. But, at least for me, they are worse the more I take it. Not sure that would work for you - but you could try it one night and see. Even if you could only use it a couple times a month, that's a few pills in your stash.

Since you are seeing Early, you could always tell him that you have a few days that are harder and you need a few extra for the month. That's very true for most of us! Women almost always have a harder time during menstruation and men and women have hormonal and stress ebbs and flows. He might be willing to write for a few more each month so you at least would never run out. And, with care, could sock away a few here and there.

[badnights]

That's why I'm scared to move to methadone.

I have so far been ok with hydromorph contin while traveling, but only within Canada (and one trip to the States, where I didn't have to refill). My GP gives me longer prescriptions, but I have to give her a bit of notice. I have gotten prescriptions for up to 8 weeks worth when working in remote areas where there are no people. It used to irritate the heck out of me that I had to give notice - no spontaneity at all - but nowadays I'm just happy for whatever I can get.

I also had to extend a visit I was on, one time, and my doctor's office faxed a prescription to a pharmacy in the city I was in - this is between provinces in Canada. So as far as that goes, the system has taken care of me, more or less.

I always have that stash, too. I don't mention it to my doctor, because probably she would prefer not to know. Someone on this board mentioned his stash to a new doctor, assuming the new one would be like the old one, and had to suffer a lowered prescription as a result - the new doctor told him to use up his stash. He was some pissed off.

[Polar Bear]

Definitely definitely !!! keep quiet about any stash.

Oooops, that sounded like I was condoning hoarding drugs.... I'm not really, it's just that we are such a special case and have to stay ahead of symptoms rather than at times border on the edge of insanity.

[ViewsAskew]

Definitely definitely !!! keep quiet about any stash.

Oooops, that sounded like I was condoning hoarding drugs.... I'm not really, it's just that we are such a special case and have to stay ahead of symptoms rather than at times border on the edge of insanity.

Exactly.

[Polar Bear]

next spring time I have a journey from UK to North west coast USA. You can imagine that I am already figuring this. We will have to do stopover in New York (or wherever) to make it into 2 journeys of about 6 hours each. Last time we flew 9 hours direct to Edmonton Canada and I was a gibbering wreck by the time we landed. Even with time out doing circles back at the kitchen end of the aircraft. When in my seat I was punching my limbs and weeping. My medication is now more efficient and I plan to make suitable use of my stash.

[aveerik]

I think building up a stash is so smart. You never know what might happen, 4 feet of snow, a terrorist attack. I am not one of those people at all worried about the end of the world but I do worry about my WED and not being able to get my meds. My goal is to get at least a couple of months in my stash. I think asking for a small dose increase and then putting that dose away. I also know that I wouldn't share that with my doctor because its for my sanity and she wouldn't understand it. Obviously an addict would not be able to stash any extra meds, they would have to take it, so I don't know why they would care.

As far as traveling with methadone I tried to ask Kaiser what they do but couldn't get an answer since I am not on it and it is so controlled so I called a methadone clinic and they were very helpful. They said their maximum take home amount is one months worth for patients that have been taking it long term. They can sometimes get it okayed if the patient has proof that they are traveling but it goes to someone way beyond the clinic supervisor. The nurse also said most of their patients can arrange to go to a clinic in any of the states with like a friend pass, their clinic contacts the out of state clinic, gives them the dose and medical info needed and its all arranged. The nurse finally asked me why I was asking these questions and I explained the questions you had jkendrick. She said she was sorry but she didn't know much about what to do for international travel but she was almost positive that some of their patients had traveled internationally with no issues carrying the meds with the labels on the bottles, but she didn't know about having more then a one month supply. She also mentioned that several of the methadone clinic patients were what she feels are not addicts but there to get there meds without the hassle of dealing with their doctors and that they have some there because their doctors "fired" them and left them high and dry. She also said they take some insurance and many patients have their meds covered. This makes me wonder if this could be a last ditch option for some WED people. I have no idea where this clinic is but from the address I know it is in a decent part of Vancouver Washington.

[ViewsAskew]

Several of our members use pain clinics - in some states it's the ONLY way to get methadone. I believe Michigan, for example, does not allow regular doctors to prescribe it. One of our past moderators used a pain clinic because it was easier. I've contacted one - the problem is that if you need other WED help, they don't have a CLUE about what to do. I really want one doctor who gets it all. If I were in a state where I had to, I'd absolutely do it, though.

[QyX]

I have a stash, too. I was using my stash for the past 40-50 days and I have enough opioids here for another 30 days. Here in Germany it is relatively easy to build a stash. Doctors normally don't write prescription for 30 days or 60 days or 90 days. The system is different. Let's say someone takes Oxycodone XR. Here we have Oxycodone XR from various companies at pill strenghes from 5 mg to 80 mg (5, 10, 20, 40, 80). Then we have three classes of different packaging sizes (N1, N2, N3, N1 being the smallest, N3 the biggest box).

So there is 5 mg / 10 mg / 20 mg ... N1 = 20 pills, N2 = 50 pills, N3 = 100 pills.

Let's say you take 40 mg of Oxycodone per day (two times 20 mg). Most doctors would prescribe the N3 size because the N3 size was designed for long term treatment. That would make 50 days. You could tell the doctor that 40 mg is not enough and you need 50 mg. So he would prescribe a extra 10 mg package, maybe a N2 package with 50 pills or even a N3 package. Doesn't matter so much.

You still take 40 mg and you can easily start saving the 10 mg pills but you better don't tell him. The law doesn't limit for how many days a Doctor is allowed to prescribe drugs like Methadone, Oxycodone etc. It only says how much of a classified substance a Doctor is allowed to prescribe for 30 days for one patient. For Oxycodone the limit is 15.000 mg, for Morphine 20.000 mg, for Methadone it is 3.000 mg. (Methadone is not really used to treat pain or WED in Germany. 99% of the people who get Methadone take it in a Methadone program for opioid addicts). Our law also allows it to exeed the limits. The doctor then has to add some additional sign on the prescription. They normally don't do this but if you go on a longer journey they will most likely do it.

My doctor would go nuts if he had to maile a prescription every 30 days. It is just too much work. He normally prescribes enough for 60 days and I take less then he prescribes (and I am always honest with how much I take, he knows about my "stash").

I consider it somhehow stupid that a Doctor only can write a prescription for 30 days in a case were a long-term treatment is necessary.

In the past weeks I was so sick and completly unable to go out and talk to a doctor so I am really happy with my stash. It created some kind of independence and gave me room to breate and think.

[Chipmunk]

I do the same thing as Anne, except mine is for Adderall. It saved me a couple years ago when there was a nationwide Adderall shortage - I had to call from pharmacy to pharmacy to find one that had any in stock. I filled it three times that whole year. Thankfully I had built up a stash and was able to stretch that out over the year.

[Polar Bear]

I have booked my tickets to travel from UK to North West USA IN May.
This involves a 7 hour flight from Belfast to Newark and a 6.5 hour flight from Newark to the West Coast with a 1hr 45 minutes layover in Newark which will be a bit tight.
We want no more that one stop but if we miss our connection the following flight is actually via Houston anyway.
If it gets tight I will try and grab someone in authority/uniform and say it looks like we will miss our connection of international to domestic, and ask for help.

However, for booking purposes I wanted to use a travel agent because I wanted someone to reserve suitable aisle seating and assure me that this was definite seating booked, in writing. A small local company was wonderful, they tried to get us sorted with a longer layover (without success) but they tried. They also spent ages while we worked our way through possible suitable seating, I still wanted to be sitting with my husband. We chose the back row seats, one being an aisle seat, for all 4 flights. It means we are near the toilets.... but it also means that I don't have to climb over anyone, and I don't have to walk up and down the aisle to find a bit of space. We are right beside what tiny bit of space will be available. The fact that being near the toilets may make it a little 'busy' is a small price to pay.
And on the subject of price, the travel agent matched the internet Edpedia web price. How good was that ?

Also, we have our itinerary print out which includes..... our numbered seating. Well dare anyone try to tell me that these seats are not reserved for us !!!

Just to add that I provided my current WED/RLS Membership Card with my name and ID number. It details the symptoms and advises that the Card Holder will need an aisle seat and room to move. She was able to see that I wasn't just any punter wanting a particular seat, the ID Card confirmed that I have a medical condition. I felt no embarrassment at showing the card and asking for help.

With a little extra medication I have prepared as best I can.

[Rustsmith]

You should still check either on the airline's website or have your travel agent confirm your seating assignment about a week in advance. Booking this far out, there is a significant chance that the airline will change one of the airplanes that is currently assigned for your flights. They don't need to change the type of airplane (say Boeing 777 for 757), they just need to change the model (777-200 for 777-300). That can change the seating layout and thereby the seat assignments for everyone.

With that said, it is unusual that someone assigned to an aisle seat gets moved to a middle or window, but it can happen.

As for your selection in the back, there is sort of a side benefit to this part of the plane. You can stand up in the aisle next to the seat and the flight attendants will not tell you to return to your seat. They are supposed to do this for security reasons these days, but a friend says she gets a lot of WED sufferers standing back there during the flight.