Augmentation tied to stroke ?

[Silentmeow]

I am new to the board and organization. I have had rls for over 6 years. It has been maintained with Mirapex quite well for the past few years. I also have seizures which are controlled with medication. I have degenerative disc disease and have a neurostimulator implant. I have Sjögren’s syndrome too. Now I have a balance problem which we think is caused by mini strokes.
Before the balance issues the rls problems started to get worse and My neurologist started increasing the Mirapex and I went to a time released type. We went up to 2.25 but it didn’t do any good. I went to regular Mirapex at 1 mg in am and 1 at noon and 2 at night but now it’s not working and I and taking 2 every two hours. I mentioned I have this balance problem which is not inner ear. It causes me to walk to the left and for awhile when it was really bad the rls would calm down and then as the balance got better the rls got bad again,that’s what brought me to the site as my neurologist can’t figure it out. I never heard the term augmentation until I came here. I am desperate to try something. I can’t take lyrica or gabapentine. I sleep very little. I take topamax for seizures and leg pain.Plavix for blood clots.
Hopefully I haven’t gone on too long here. I figured you needed some background info.
Thanks for any input on how you handle your rls.
Sue

[Silentmeow]

I realized Ihe title of the subject is misleading and in hindsight not sure why I titled it as augmentation didn’t cause the strokes but it is tied in some way to it.

[Rustsmith]

Silentmeow, I temporarily edited the title for you. Let me know what you would like it to be.

The amount of Mirapex that your doctor has you taking is HUGE if it is just for RLS. The current max dose recommended for RLS is between 0.25 to 0.5mg per day. Getting off of a dose that high is going to be tough and absolutely MUST be done under the direction of a neurologist who understands augmentation. There is a condition called DAWS (dopamine agonist withdrawal syndrome) that can cause permanent neurological damage if you stop taking the Mirapex too fast.

Since you cannot take gabapentin or Lyrica (which are related to your topamax), the only med class left are the opioids. Fortunately, opioids will also help with the Mirapex withdrawal IF (major IF) you can find a doctor who will prescribe them for you AND they are compatible with your other conditions.

Finally, has your doctor done any blood work to determine your iron levels, specifically your ferritin level, and do you know the numbers? RLS is due to a deficiency of iron in a specific part of the brain. If you ferritin levels are low, then increasing iron could help relieve many of your RLS symptoms. Others have had iron IV injections that have provided significant improvement and allowed them to reduce the dose of the meds that they take.

[Silentmeow]

Yes I did have a Ferritan level done and it was 119. You mention that the amount of Mirapex I am is a lot and yet my neurologist doesn’t blink an eye when I questioned him about it he said it’s only 1 mg so I didn’t feel guilty if I had to take 2 but now I am concerned plus I feel tired without being able to sleep well for a length of time.
Couldn’t I switch to requip. You mention tramadol. I know that oxycodone doesn’t work.
Thanks for input.
Sue

[stjohnh]

Yes I did have a Ferritan level done and it was 119. You mention that the amount of Mirapex I am is a lot and yet my neurologist doesn’t blink an eye when I questioned him about it he said it’s only 1 mg so I didn’t feel guilty if I had to take 2 but now I am concerned plus I feel tired without being able to sleep well for a length of time.
Couldn’t I switch to requip. You mention tramadol. I know that oxycodone doesn’t work.
Thanks for input.
Sue

Sue, Welcome to the RLS community. Steve is spot on, as usual. You are on a dangerously high dose of Mirapex and need to get off it. You can't switch to Requip because Requip is a dopamine agonist, very similar to Mirapex, and would cause the same problem. Opioids are likely the only solution in this situation.

[Silentmeow]

Now to convince my neurologist to try tramadol. Even though I live near a large city it is difficult to find another neurologist who will take Medicare. I do like who I have I will just have to present my findings to him . I don’t like the idea of opiads either but if they work and I can take less.i will run it by my primary care doctor this week .
Thanks again,
Sue

[Silentmeow]

I remembered that I had some hemp cream that I had used before and it had worked for awhile. So tonight I took 1 mg tablet and rubbed the cream on my legs. Things worked for awhile but acted up a again . I have reapplied the cream and added a heating pad and things have calmed down. I am used to not sleeping much at night.
Someday
Sur;

[ViewsAskew]

The neurologist may be used to treating Parkinson's patients - and indeed, that dose would not be an issue for them at all.

Do you have any options for other physicians, Sue?

[Silentmeow]

He really treats everything as he is the only one in our area without going into the bigger city and he takes Medicare. The hemp cream and heating pad did help reduce the rls so I didn’t take anymore meds. I see my primary doctor Thursday and will explain to her what I have found out and how to approach the neurologist. I figure by the time my appointment comes on the 16th maybe I will be weaned down on Mirapex. He is usually asks me what I think about things but since I really have facts this time it might be different. We have been trying to figure out what is causing my off balance on my left side. I had had CT’s and other tests and was on high doses of prednisone for awhile and when I was the restless leg disappeared. They figure i had a stroke and finally had mri which shows mild chronic ischemic changes consistent with mini strokes so I am on Plavix.
Christmas has arrived no little ones here. The only ones stirring are me and the cat!
Sue

[Silentmeow]

Now the question I have is I was thinking tramadol was the drug to switch to but reading through,that has it’s drawbacks too. What is the best drug to use? I can’t use lyrica or gabapentine. I have used oxycodone for my back and never had it help my rls.
Sue

[Polar Bear]

I am surprised that the oxycodone did not have any benefit on your rls although you may have needed a higher dose.

Yes, Tramadol has its drawbacks but all opioids and indeed all meds will have issues.
I had to come off Tramadol when I started to have little ticks and jerks.
You ask what is the best drug to use - and the answer is .... the one that suits you best. That sounds trite, but we all react differently to different drugs. A phrase that you will see often on this site is that 'what helps one person does not help another'.

I have rls 24/7 and have now settled my meds on Codeine at the max daily dose supported with Lyrica at 200mg x twice daily.
I do see that you cannot use Lyrica.
I have recently weaned myself off Ropinerole having been on it for 15 years. I was taking well over the now recommended daily dose. Ropinerole/Requip is very similar to your Mirapex and I did it very slowly, From January to November.

I figure by the time my appointment comes on the 16th maybe I will be weaned down on Mirapex.

If I understand your original post correctly you are taking Mirapex 2mg x every two hours. Consider that the RLS experts now feel that .5mg should be the daily max.

I don't know how much Mirapex you think you will have weaned by January 16 but you have a long way to go and you must do it very very carefully. I took my weaning in mini steps of 2 or 3 weeks. I had no neurologist and a GP who was uneducated in RLS so I researched on the Augmentation Forum and listened to advice given. Then I did it even slower than advised. Yes, it made it very drawn out but by accident or design.... I got through it with minimal issues helped by the addition of Lyrica.

Steve says

The amount of Mirapex that your doctor has you taking is HUGE if it is just for RLS. The current max dose recommended for RLS is between 0.25 to 0.5mg per day. Getting off of a dose that high is going to be tough and absolutely MUST be done under the direction of a neurologist who understands augmentation. There is a condition called DAWS (dopamine agonist withdrawal syndrome) that can cause permanent neurological damage if you stop taking the Mirapex too fast.

Please pay great attention to what Steve says.

[Silentmeow]

I realized thinking i could get off the medication in two weeks was foolish,I panicked thinking I have been on way too much medicine when I should have researched it instead of letting him just up it but I had so much going on medically. I know it has to be done gradually. At least the hemp cream has eased the rls so I might sleep a little better.
Thanks for your input.
She

[ViewsAskew]

...I should have researched it instead of letting him just up it but I had so much going on medically.
She

I felt angry with myself when my doc kept increasing mine and I landed in augmentation hell. I had a hard time forgiving myself - I eventually did, but am STILL annoyed with the doctor when I think about it.

[QyX]

Now to convince my neurologist to try tramadol. Even though I live near a large city it is difficult to find another neurologist who will take Medicare. I do like who I have I will just have to present my findings to him . I don’t like the idea of opiads either but if they work and I can take less.i will run it by my primary care doctor this week .
Thanks again,
Sue

You can also check if medical Marijuana is available in your state. It does absolute wonders to my insomnia and even improves a lot of core RLS symptoms. My insomnia was out of control for several years and medical Marijuana was my only option left. Now it is about to turn my life around. It is worth a shot for sure.

How much Oxycodone did you take for your back pain? As already mentioned, maybe your dose was not high enough or it is also possible that because of augmentation and your relatively high dose of Mirapex Oxycodone was not able to work properly.

I mostly use Morphine as an opioid but I rotate between Morphine, Oxycodone and Hydromorphone to avoid tolerance issues. My average daily dose of opioids right now is equivalent to ~ 160 mg of Morphine.

Given your other medical issues, it also could be that you have some form of secondary RLS, related to your degenerative disc disease. I honestly have no idea how effective opioids are when it is not classic primary RLS related to iron deficiency in the brain but secondary RLS as a result of other conditions.

You do have quite a number of serious medical problems. I feel like you really need to see someone who knows his stuff.

[Silentmeow]

Florida has legalized medical marijuana but just what you have to go through to get I am not sure. I have access to 5-325mg oxycodone through pain management. I have to jump through hoops to get that. Remember things tightened up. I was supposed to see my primary doctor today but she was sick. She is young very knowledgeable and open to things and if she doesn’t know something she looks it up. She has called me home to see how I am when I started with the issues with my balance. Not many doctors do that. I printed out info on the augmentation in case she was not aware of it. She was the one who had ordered the Ferritan test a year ago. I was going to ask her about a sleep study,we had talked about it before since I have problems but I always resisted since I have said i would not where a mask. I never thought about the study with relation to rls. I will see her in 2weeks before I see my neurologist. It’s tough finding good doctors here. I travel 45 minutes to see a rheumatologist and he isn’t the greatest. My primary at one point wanted me to go to the Mayo Clinic in Jacksonville but they repeat all the tests I have had been through again. She agreed that is what they would do. So I will just have to follow the rule wean slowly like with prednisone and hope for a substitute.