Neurologist for RLS- frustrated

[Newmomma567]

I finally saw the neurologist for RLS. She wants me to take Horizant, and balked at giving me low dose a Tramadol because I’m breastfeeding.

(Tramadol does not cause issues in breastfeeding, which is why unwanted to try it. EVERY other drug for RLS does.)

Told me to stay on the ropinerole at .50 mg (dopamine agonists supress prolactin,) take Tramadol 50mg (Only because I INSISTED, and I currently don’t have any because she wouldn’t give it to me until she gets the ok from my OB- who has verbally told me it’s fine...) and to add Horizant 600g, even though I told her I have tried it before, and regular gabapentin does nothing other than make me feel super dizzy. Apparently, I am going to stay stuck with ropinerole for now too, because we did not discuss a tapering schedule, despite my pleas that it is killing my milk supply. I’m also supposed to go get my Ferritin level checked. Hopefully that will tell me something.

I realize I’m young for her to begin prescribing a narcotic. I’d love it if I could find an alternative. But Geeze... I’m dealing with a 7 week old new baby, and I need to grab sleep however and whenever I can. I feel like her conservative approach is going to have me taking useless meds until she’s finally convinced I have tried EVERYTHING else, and then is just going to put me back on ropinerole again, or the Neupro patch. (More dopamine agonists).

I’m more exhausted than I’ve ever been in my life, and my RLS is the worst it has ever been. Just needed to vent, everyone.

[Hidden]

I'm saddened to hear of the lack of sympathy and understanding shown you by this neurologist.

It is right in some respects that only suitable qualified people have the authority to prescribe certain medicines or refuse a prescription. It's assumed that they make these decisions based on good clinical judgement and it's frustrating when it appears their judgement is apparently NOT clinically sound.

[Sampsie]

I really feel your frustration. It must be so hard and you just want a medical person to listen and help. I am not going through what you are, and I don't have a newborn, but I am feeling at a loss too. I've just come off Pregabalin and have started on Oxycodone. No-one seems to care that my hair is falling out at an alarming rate since I went on Pregabalin, or that there is a starting does of each medication that is ineffective so you are essentially going without what you need until the person in charge of you gives you access to a high enough dose. I agree the tapering process is often ignored. I was so desperate this week I found some old Tramadol and took too much of that, with no-one to advise, and I was quite ill for two days.

Newmomma, hang on in there. Get as much support as you can from your close ones and keep asking for what you need, no matter how tiring it is. Get hold of medical papers, quote them and if needed, change your physician. Can you email Dr B and get a written recommendation which you can take to your next appointment?

I wish I could help.

[Newmomma567 in reply to Sampsie]

Oh nooo. I have alopecia, and I know what it’s like to loose a shocking amount of hair. My form is alopecia areata so sometimes entire circular patches fall out all at once and it’s devastating. I’m so sorry you’re dealing with that. Have you looked into PRP for hair regrowth? I have had amazing success with it.

In the meantime, I’m so sorry to hear you’re not being heard about that type of devastating side effect. Sometimes I wish I could just transfer all the symptoms and pain (existential and otherwise) to the medical person I am talking to so they might have a bit more empathy when it comes to listening to their patients. I know practices get busy, but I also know that some of us wait months for the opportunity to talk about issues that affect us greatly every single day, and we just need to be HEARD.

[Sampsie in reply to Newmomma567]

You're so right, we really do. I'm sorry to hear about your hair. That's great you have had success with PRP - I haven't heard of it. That is definitely my step, to Google it! I hope you have managed to get some sleep.

[Shumbah]

Someone I know was told by her friend who is a GP to tell her doctor that the prescribed medications cause her to feel suicidal. She told her that if could not take the meds due to suicidal tendencies she would be prescribed opioids .

So she kept getting prescriptions from doctor never filled them when back and rattled off a heaps side effects she found on the internet and added suicidal tendencies to them all. They would prescribe another and another it took a few months of her going backing and telling her Gp all the side effects and feeling suicidal from the drugs. So when she said the same about the gabapentin they said well we cant give you pregablin because it also can cause suicidal tendencies.

Finally she was prescribed opioids !

[Newmomma567 in reply to Shumbah]

I might have to attempt this tactic. It’s funny... I’m bring closely monitored for post partum depression (which I don’t have, thank GOD) but this sleep deprivation due to RLS is taking its toll on me mentally. You’d think that would factor into their concern. I don’t want or need an antidepressant.. I need to effing SLEEP, doc!

[Shumbah in reply to Newmomma567]

I will send you a private message

[Jumpey]

I'm saddened by the lack of empathy and understanding and disregard of your views.I would email Dr. B and explain you predicament. Then print off his reply to present to your neurologist. Look after yourself as much as you can and get as much support as you can. You will get through this.Sending love.x

[leadingwren]

So sorry to hear of your distress at this stage of your wonderful new life with baby. However don't forget that whatever you take could be passed on as you are feeding baby yourself. Sounds to me as if has weighed up all the angles to keep you both safe.

Having a baby is stressful and anxious time, and perhaps you should listen to what she says. It's ok to read about other people's experiences, and what helped them, but we are all different and what suits some is wrong for others.

Hope you get some peace soon.

[Newmomma567 in reply to leadingwren]

When I said “narcotic” I was really just meaning Tramadol, and that was to help with both symptoms and the pain of withdrawal from ropinerole. I’ve been researching and, out of all the drugs you could be prescribed for RLS, it is actually the LEAST harmful. But at this point, my milk supply is still only a few oz because the ropinerole is suppressing it so the baby is getting very little breast milk anyway.

I guess my main rage is that The window for me to increase and regulate my milk supply is closing fast, and this doctor wants to dick around. I just want an alternative treatment for a few months, so for years. I don’t think that’s too much to ask.

[Newmomma567 in reply to Newmomma567]

Sorry.. I meant “not” for years.

Anyway... I just think it’s weird that a doctor would be more concerned with a possible trace level of drug in 4 oz per day (my child eats about 20 -25 oz per day, so the rest is formula) than an unsteady, completely sleep-deprived mother who is lightheaded and dizzy from the Horizant, especially if it doesn’t work.

I wish I didn’t have to use anything, but that’s just not in the cards. I never thought that, of all the issues I could be facing post partum, that this would be one of them.

[Tobias10]

My latest neurologist put me onto Horizant and I did not notice any difference other than my copay was significantly over the regular Gabapentin. I am on vacation in a hotel room and have slept about 15-30 minutes every hour or so during the night after taking my Tramadol, .25mg Mirapex, 2 300mg Gabapentin, my 2mg Neupro patch and 2 Calm Magnesium gummies. The trip here in the car for was shockingly amazing with no spasms for 8.5 hours but now can’t sleep. Hopefully the last 6 hours of travel today will be easy, but no guarantees. It is so frustrating because no sequence of my meds ever works two days in a row.

[Newmomma567 in reply to Tobias10]

Ugh. That’s sound torturous.. and sadly familiar.

This syndrome sucks.

[vegasterrier55]

Tramadol did not work for me.

I have tried soap under the bottom sheet and even compression socks.

I now take Targinact 30 to 40mg per night and believe me it works.

[Newmomma567 in reply to vegasterrier55]

No doubt! But if the doc is *barely* willing to give my Tramadol, my guess is a much more potent opioid is completely off the table.

[Newmomma567 in reply to vegasterrier55]

I tried the compression socks and the soap trick too. Lol. If I had to stand on my head and smear peanut butter on my eyebrows I would do it if I knew it would work.

[Sampsie in reply to vegasterrier55]

Can I ask, did you have bad nausea to start when you switched to Targinact? I can't eat. I'm only on my starting dose of 5mg which is like having nothing at all and the RLS is now in my arms and it's all day too. I am going up to 10mg tonight and hoping it won't be double the nausea tomorrow. It's good to hear that it is working for you

[rls-insomniac in reply to Sampsie]

I did feel some nausea when I started taking Targinact. I'm taking 10mgs in the evening in addition to some other meds. I still have a bit of nausea sometimes. Nothing ever stops me from eating though! 😁.

[Sampsie in reply to rls-insomniac]

[wildlegs]

I’m 76 and have had RLS for 25+ years. My mother also had it for most of her life and she lived to 96. For the last 10 years I’ve taken Tramadol and it’s been a life savior. I’ve tried many things over the years but Tramadol is the only thing that works for me.

[Hidden]

If you are nursing, I definitely would check with the OB regarding any medication changes. I believe the narcotic medication may cross over into breast milk.

As far as the comment that you are too young to be on narcotics, would you be too young to take chemotherapy for breast cancer, too young for a bypass if you had a blocked coronary artery, etc.

We have a terrible disease that robs us of the joys of life by interfering with our sleep, well-being and almost every facet of our lives. I do not like the government hassle and poor attitudes of others in order to take narcotics. However, they work well for me, have not been addictive for me and have brought me back from the thoughts of ending it all due to my constant and unremitting RLS.

Remember: You are a good person, with a horrid disease, and you deserved to recover or at least have the best treatments for relief.

[Newmomma567 in reply to Hidden]

Thank you for you kind words. The doctor said some very insensitive things to me (such as I would “dry up anyway” and that she decided I should stop trying to breastfeed because “it wasn’t doing him any good”) which really discouraged me and left me in tears. A reality check from my OB and the pediatrician emphatically said that was a very uninformed opinion and not true at all.

I ended up making a deal with my neurologist: I just want to try and get him through cold and flu season, giving him as many of my immunities as possible. My argument was that of all the years this would be important, the one during a global pandemic would be one of them. She agreed to prescribe me 50mg of Tramadol on top of my lower dose of ropinerole (.35-.25) and 600 mg of horizant (which doesn’t seem to do much, but ok.. I’ll try it again), ONLY until January for that reason. I’m the meantime, I’m awaiting my IV iron infusions and shopping for a new doctor.

[Newmomma567]

Well, it appears the neurologist helped me in at one place... got my ferritin levels checked and it’s 7. That is not a typo... it’s SEVEN. I knew pregnancy and a very difficult labor had taken a lot out of me, but that level of severe anemia shocked me. She told me before that it was “normal for new mothers to be exhausted.”

So, I’m going to be scheduled for IV iron infusions hopefully next week. I am praying it brings some relief.

[LotteM in reply to Newmomma567]

Fingers crossed that the iron IV infusion will be scheduled very soon and that it will bring complete relief. We have no say in the matter, but as a young mom I think you deserve it. Keep us posted please. Oh, and make sure you het several repeated iron panels after the infusion to keep track, eg 3- and 6 months post-infusion. And then repeat every 6 months.