Taking 8 meds just for RLS and related insomnia

[QyX]

I try to manage Medical School with this disorder. Let's see how this continues. The first half year was more or less a disaster because I developed this depression on opioids. I am a way to young for this messed up disorder but there is nothing I can do against it except trying to deal with it. Severe RLS really sucks.

[Polar Bear]

Qyx - I know of a student who always had mostly A grades at school - english was always poor, I'm talking A grades always in the high 90s percentages. This student then went to university and certain grades dropped. Student was tested and Dyslexia was officially diagnosed. The student changed to a similar course but one that had less written work. Number work was not a problem - it was actually in the superior range. The student was able to qualify for certain university benefits as a 'disabled student'. i.e. To save having to queue in the university library to use a computer (for spell check etc) the student was supplied with a personal computer/printer etc. this was many years ago before everyone had a home pc. But also importantly, the student was permitted an extra 10 minutes (for every hour) when doing examinations. This was in the UK.

I am just wondering if your Medical School would have any such benefits or considerations. I'm thinking of time extensions and the like. Depression, lack of sleep because of a medical condition, the medical condition (WED) itself..... just a thought.

[veldon7]

I can relate to taking alot of meds., I have to take migraine preventatives, right now it's Propanolol a beta blocker, Mirapex, Trazodone (for sleep), Wellbutrin, was taking Gabapentin that the Pain Dr. wanted me to take with the Oxy for neck pain and some other drugs, not related to RLS. I feel tired all the time, struggle to drive, almost fall asleep, keep gaining weight. I feel so frustrated and depressed, I don't want to go on, and I have to work. I want to apply for disability, but I have to wait until I can go to some more Drs. re: Fibromyalgia, neck problems, etc. It's getting harder to qualify, I work in Medical Records, and see patients get turned down frequently. I don't know how much more I can take! I took Amantadine for about a month, but the Neuro. said he didn't think it was a good idea. It does have alot of side effects, well good luck!

[badnights]

karalea, hang in there, there is a better in your future, almost certainly. It's happened to lots of people here, the despair and darkness, and then something happens, and the severity of the disease or the side effects lifts, and we look back at the despair and think "wow, I never thought that would end, and I had totally forgotten what it was like to be happy, yet here I am happy"

I don't know if your seriously low mood is caused by one or more of your medications, but it certainly could be. It could also be that your life totally sucks right now, which is enough to depress anyone. I can't think of a brilliant solution for you, but I do think it's an odd mix of meds you're on, and I do have a hard time believing they are all necessary. I cannot understand why doctors cost so much; you've invested so much in this guy, Mr Best, but is he?

The best thing to me would seem to be exactly what Ann has suggested - a clean slate, try again once everything is out of your system. Give yourself 2 weeks after the last of it has gone; whatever time is necessary before that to withdraw according to your doctor's advice. That means more time off work. Obviously I don't know the whole story of what you've tried, so maybe I'm way off base, but it seems most of what you've tried was while you were still taking one or the other dopamine agonist (pramipexole or ropinirole), and that could have distorted the results - if you were augmenting, the disease would be worse simply by virtue of taking the DA, so you wouldn't be able to tell if the experimental med worked.

Another potential solution would be to add an antidepressant to the mix... gee...

Are you using a CPAP?
Have you not had any DA in your system since April? What was it like coming off the DAs - do you think you were augmented?

I also have to agree with eefall - Earley and Buchfuhrer are specialists who have treated a lot more of this disease than most or any other physicians on Earth, and they might be able to cut through the morass of meds you're on. You can even email Dr. Buchfuhrer in California - somno@verizon.net. His website is http://www.rlshelp.org . He will answer your email! I don't know why he is so generous with his time but he has saved a life or two along the way. He is one of the authors of the Clinical Management of Restless Legs Syndrome book and of the first Mayo Clinic algorithm for RLS treatment, and of a recent paper on WED/RLS treatment, and he's also on the Medical Board of Directors of the WED Foundation and medical adviser to the Southern California RLS Support Group. So he's legit.

You should not have to declare yourself an addict to get suboxone. You're in the wrong place if they're requiring that of you. You need a neurologist or pain doctor who can prescribe it, and who has the information that it is an acceptable treatment for W-E disease! Easier said than done, I know, and it's so hard in your condition to stick up for your rights, let alone take on the fight against ignorance.

[aveerik]

Karalea I have been on suboxone for a few months now and have been doing really well. Luckily I have Kaiser because there aren't many doctors that can prescribe it. I have never seen the actual prescribing doctor as he is in the addictions medicine area but he does the prescriptions for other doctors. I do have to do a urine test once a month which at first pissed me off but then I found out that many patients that take opiates all the time are also required to do this and this drug is so highly controlled they have to follow federal guidelines. Like opiates it is a respiratory depressant so I don't know about it being bad with sleep apnea. The best part is I literally don't feel drugged at all. I take 4 mg a day, not sure what typical doses are. I was just relieved to have something other then a DA which I don't do well with at all. My new doctor is concerned with how I will ever get off of it but right now I just never want to get so sleep deprived.

I worked for a large insurance company and I paid short term disability insurance claims. Some of our contracts required people to apply for Social Security disability. It seemed no matter what the diagnosis was they always denied you the first time you applied so we told our claimants to always get an attorney. I know you don't want to be on disability but if you can get the financial worry to go away the better your chances of getting healthy. Once you get healthy then by all means go back to work. There are attorneys that will take your case without money up front but always be careful, check with BBB and check references.

Good luck

[Rustsmith]

Karalea, I want to reinforce what averrik said about Social Security disability. We fought through this for my wife.

The first stage of review is handled by the state. The numbers we were given were that 85% of applications are turned down at this stage (so only 15% are approved). You have the right to appeal that decision. During this second stage, which is a review by the next level of management within the state, 50% of the cases are approved and 50% are turned down. Once again, if turned down you have the right to appeal.

For the third stage, you have to hire an attorney and the case is reviewed by a federal administrative judge. The approval rate depends upon the judge, but frequently ends up being 90% approval at this stage.

In our case, we hired the attorney for level 3. He sent us around to a number of different doctors and had her apply for rehabilitation benefits (which were refused because they said there was nothing they could do). This was a great investment because he warned us about what to expect from the doctor that the state required us to see for review of her case. The doctor was supportive primarily because we came in prepared (unlike most of the "injured" construction workers seeking benefits). Our attorney informally provided all this to the judge, who sent a strongly worded message back to level 2 requesting they reconsider. She was approved during this reconsideration.

Once approved, you get all of the SSDI benefits back to the day you applied and if you had to go before the judge, SSDI also covers your attorney fees. BUT, that does not mean that you get a nice big check upon approval. In our case, she got half upon approval and they sat on the other half for six months just in case our attorney decided to place a claim (her case did not formally go to the judge, so no attorney payment by SSDI). Letters from the attorney stating that he had been paid did no good. They were just looking for excuses to hold onto the money for six more months.

For us, this entire oddyssey took 13 months with numerous trips and wasted days at the Social Security office. Simply put, the system is designed to make you give up and go away. Only the most determined and diligent applicants get approved.

[karalea]

Thanks everyone for your responses. You have all given me some great advice and support. Sorry that I am delayed in responding. I re-visited again yesterday after not having been on here for awhile. I have been trying to go with the flow and remain positive by distracting myself with other things. Yesterday things got the best of me again when I realized that I could no longer deny the bothersome side effects of my meds. I can't take them anymore. I have been doing a lot of research today, wracking my brain trying to figure out what to do next. I have posted quite a bit today and yesterday. Beth, I think I am going to write to Dr Buchfuhrer. Thanks for the link. I am going to go off all my meds and go back on Mirapex until some sort of longer term solution can be found, if there is one. I have not been on Mirapex or any DA's since April so I would think I will be good for awhile. The neuro doc I have been seeing is going to refer me to Duke University Hospital's sleep clinic. Maybe I will get some further assistance there. I have applied for disability but don't expect I will get approved as Steve indicated. Thanks Steve for sharing the experience of you and your wife with regard to this. I am not ready to give up on working yet. I have a second job interview this Wednesday. I am hoping I get the job. More importantly, I am hoping I can keep it! I have a 14 year old to send to college and a house that is not nearly paid off. Used up most of my savings trying to get the right treatment for this. It is so discouraging. Thanks again for the support.

[badnights]

Please call that sleep clinic and talk to someone before you go - try to find out how many WED/RLS patients they see. If they aren't familiar with the disease, they likely won't be much help. Oh my I seem to be very negative today. Someone else can give you better advice, no doubt.

It's good you're writing Dr. B. Getting off all those meds should be a positive move; but returning to Mirapex will not necessarily be oK "for a while" - it depends on your individual makeup. I hope that it works out nevertheless - at least holds you over til you can connect with a specialist familiar with WED/RLS.