MD's, side effects, venting; warning-long post

[karalea]

I have written up my long drawn out saga one or 2 times on other threads. Long story short, have had RLS since age of 37, now, 52. Was on Mirapex/Requip for years with gradually increasing doses until I had to stop taking these drugs this past April due to a compulsive eating problem which caused weight gain of approx 70lbs, 40 of which I have lost. Since April I have been on trials of just about every drug used for RLS imaginable (Horizant, Gabapentin, all the opiods) all of which did not work or caused severe side effects.

I had tried Lyrica in the past which had too many side effects. Tramadol with Mirapex and or Requip worked for awhile. Now I am on this elaborate cocktail of Oxcarbazepine, Opana, Ketamine, Amantadine, Clonazepam (for insomnia) and Melatonin 10 mgs. Although this cocktail works, I feel that it has taken my personality away. I no longer feel interested in things. I am sluggish and tired all day. I basically get through the day just so that I can go back to bed. That has not been my personality in the past. I have always been someone with lots of energy and interests in life. Now, I don't leave my house much and I watch way too much TV because that is all I have the energy to do. Some days are better than others.

After having gone through a couple physicians, I finally was referred to a neurologist that supposedly took my insurance. When I walked into his office the first day, I was informed that he did not accept insurance or Medicare. He charges $500.00 for the first evaluation then $250.00/hr. He gave me a special rate since I was in dire straights and the referral came from a physician that he had worked closely with. He was a really great physician and has been patient with me as I have tried the various meds that he has prescribed.

Since fatigue and depression were recurring side effects, he felt that it was necessary for me to have a sleep study to rule out sleep apnea, which,as it turns out I have (severe case) . I now use a CPAP machine. I was referred to a sleep Dr for the sleep study. In that process,the referring neurologist let me know that he was closing out my case since the sleep MD would take over managing my RLS and meds. He mentioned something about payment associated with a sleep study and how it would not be fair to her is he continued to follow me. I think he was trying to pawn me off onto her because I am a complicated case and cannot afford the $250./hour.

The sleep Dr, also a neurologist, was very nice but it was evident during my appointment that the information provided to her by the referring physician had not been read and that she did not have the time to deal with the medication complexities. She had no awareness that she was referred to manage my meds and told me that I would need to get my meds from the referring Dr. She informed me that I would need to go back to the neurologist that had referred me but that she would follow me for my sleep apnea.

When I contacted the neurologist to let him know what the sleep Dr told me, he made it clear that he could no longer afford to give me the special rate. He complained about how he is not making enough money and was quite annoyed.

Meanwhile, I need to do something about the meds that I am on. I have used up all my retirement money trying to get on some sort of med regime that I can live with. I need to get a job and function. My head is so foggy and my short term memory is nil. I can read an article about something, understand it at the time and 5 minutes later, I cannot even tell you what it said. How can I possibly function in a job that way? I have had to take the entire year off from employment for this and I now feel like I have to start all over again since it was not known from the beginning that I have sleep apnea. Many of the side effects that I experienced during the med trials may have been from the sleep apnea.

I am feeling like I am a big burden since neither physican wants to deal with me; the sleep Dr because she doesn't prescribe opiates, the neurologist because I don't have enough cash. After everything is said and done, I think I should go back on the Mirapex but I don't feel that there is anyone that has the patience or understanding to deal with me unless I have wads of cash.

I feel like I have to choose between mind or body. Either I walk around in a haze, unable to process or remember anything (which is partially why I lost my last job) or I get obese and develop all the problems related to obesity. Basically I have to choose between a heavy duty cocktail like what I am on now or a combo of something like Mirapex, Amantadine and Tramadol. This would mean that I would have to again withdraw from the Opana, taper off the Oxcarbazpine, Ketamine etc. If I do that and go back on the Mirapex, I may find that I cannot tolerate it again. What is reasonable to expect in terms of side effects? Is it unreasonable for me to think that I can ever feel normal again? Should I consider my current existence the "new me". I might as well be dead. I don't know of any other options. This RLS has ruined my life. Sorry this is so long. Again, thank you to anyone that has read all of this! I am open to anything anyone has to say.

[Polar Bear]

I am sorry that you are feeling so bad.
You are correct, we take a pill, then we take a pill for the pill. Most of us cope with our symptoms in a similar fashion and we all cope with the side affects which may be to a greater or lesser degree. We adjust our employment hours or the employment conditions to try cope with the work situation. Where I live we don't have anyone even referring to themselves as a WED/RLS specialist. Specialist help is not available. I went to a neurologist who simply confirmed that I had WED and should continue to work closely with my GP.

What is your relationship with your GP like. Have you tried using credited information on WED to help discuss the matter seriously with your GP. The links in my signature, and the signatures of ViewsAskew and badnights refer to the treatment of Wed and dealing with augmentation.
Forgive me if you have already covered this point in previous posts.

My GP was my saviour and treatmed me using these links. I printed out the information and highlighted what was relevant.
Have you had your ferritin checked,you know that it should be 100 before taking the like of mirapex and ropinerole or any other DA medication.

Most of us manage to find a ' normal', but it may be a different 'normal' than in the days pre WED/RLS. And most of us function most of the time but it is rarely an easy route to have the medications that will work best for us.

You also can write to Dr B, using the information on this post and see what route he suggests.

[ViewsAskew]

Tough situation. And, boy, did I get mad at your doctors! All of them, actually, including the whiny neuro. Seriously????? Get over it. Since you are retired, does Medicare cover any of this?

karalea, I know you don't want to get taper off of everything - I hated it when I did it. But, would you consider a complete detox - say 3 to 4 weeks without ANY medication? Yes, I know what that would be like....but there is evidence that his may be necessary when someone has severely augmented and not taken a break from the meds. Read through EeFall's experience for how it helped him. he couldn't take enough meds to control it until he did this. Now he can.

I honestly think, as I noted before, that some of the meds you are on are doing more harm than good - and are dangerous for you. I do think that clearing them ALL out of your system may be your only hope. I do think there is a good chance you can find a better combination and take fewer drugs. That said, I can't honestly say that you'll ever be who you were. I know I'm not. I can work, though, but it takes a lot out of me and I don't know that I could work full time, regular hours without a terrible cost.

[karalea]

Thanks Polarbear and ViewsAskew for your responses. How depressing to think that my life will be like this from now on. ViewsAskew, I agree with you at this point. I have decided to come off the meds I am on and go back to the Mirapex. I was hoping that my body would adjust and that I could go back to living again, but it isn't going to happen. I may be able to get a few more years out of the Mirapex and maybe something like Tramadol, and or Amantadine. I have gotten recommendations from a holistic MD that did a urine and saliva brain chemistry study on me a few months back. He is recommending that I try Daxitrol and Kavinace based on the results of these studies. Daxitrol affects Dopamine and Serotonin in a way so that it inhibits cravings. Supposedly it decreases the desire for a substance (food, gambling etc) as well as the motivation to seek out the craving. This may make it possible for me to go back on the Mirapex without problems. Apparently people have used this for weight loss. The Kavinace is used for anxiety and insomnia. It works on the Gamma cells. Not sure how. I could not find a scientific study. I am going to start a thread about these supplements. Thanks for reading my post and replying.

[badnights]

Please be careful about this holistic MD. Does the MD stand for medical doctor or is he faking it? Supplements are a crap-shoot, and I don't know if you can afford that emotionally or physically at this point.

As for your comment "How depressing to think that my life will be like this from now on." no no no, your life will not be like this from now on! It will get better! It might also get worse, but whatever it does will be temporary. Nothing lasts forever, and definitely not drug-induced fog and despair.

You're on the right track, you're taking command. Please don't spend any more money on anyone unless he or she really does know how to manage this disease. It is not that complicated; I can't imagine why that "nice" neuro had you on such a mixture. Unfortunately the only way to judge what a so-called specialist knows is to know a lot yourself. So keep on doing your research; it will be your defense against charlatans and mis-informed physicians who can't be bothered to do their homework.

[aveerik]

Karalea I really worry about how your doctors bad treatment could be detrimental to your health. I also think you should try a vacation from your drugs. I don't know about all of them but some meds can be deadly if stopped cold turkey, I know you are already aware of this. To stop the DA's you could find references from Eefall to see how to proceed, but the rest I would check with a pharmacist. If you find that all of your doctors stop seeing you and your having problems getting your meds then you should go to ER and make them help you. I just don't want you to have seizures or something horrible from not being under a doctors care. Shame on all your doctors, I would seriously threaten them that they have to continue your care until you find someone to take over. Be that a month or 6 months. They can't just pass the buck like that. Didn't one of the moderators mention a type of doctor that specializes in treating someone on multiple medications?

[karalea]

Aveerik, I contacted the physician that has been prescribing me the meds and insisted that he see me. I am starting to taper off the meds and feel a bit better about things. The Oxcarbazapine has been decreased. I am now off the Ketamine and am tapering the Amantadine. My head feels so much clearer and I am still getting pain relief. My hope is that I will be able to come off the Amanatadine completely and decrease the Opana to 5mgs and supplement with .25 of Mirapex if necessary. I think that regime will be manageable. Thanks for your post.

[ViewsAskew]

Aveerik, I contacted the physician that has been prescribing me the meds and insisted that he see me. I am starting to taper off the meds and feel a bit better about things. The Oxcarbazapine has been decreased. I am now off the Ketamine and am tapering the Amantadine. My head feels so much clearer and I am still getting pain relief. My hope is that I will be able to come off the Amanatadine completely and decrease the Opana to 5mgs and supplement with .25 of Mirapex if necessary. I think that regime will be manageable. Thanks for your post.

Very good to hear.

[aveerik]

karalea sounds like you are on the right track, and good for you for insisting your doctor see you. As much as some doctors don't like it we have to be pro-active in our care or we get no where. I hope your head keeps getting clearer too.