How To Get Husband to Understand

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
ymgap
Posts: 2
Joined: Sun Jul 07, 2019 2:51 pm

How To Get Husband to Understand

Postby ymgap » Sun Jul 07, 2019 3:46 pm

I’m currently taking 600mg of Horizant and 1mg of Pramipexole. I love the Horizant and take it around 3:30. The Pramipexole upsets my stomach and puts me to sleep within an hour. I take it around 5:30. If I wait an longer on either one, I can’t get my symptoms under control for hours no matter what I do. I’ve had RLS for 15+ years and have a great doctor. I’ve been on Requip and the Neupro patch (which I loved but it’s too expensive). My problem is that since I get really sleepy on Pramipexole and can’t drive after I take it, I can’t participate in any activities after 4 pm. My husband wants to go out to dinner and I can’t because I’m miserable. I’ve had to give up several groups I participated in because the meetings were in the evenings. He doesn’t really understand. As I said, if I delay taking the Pramipexole, it takes hours to recover and if I take it, I’m sleepy and not enjoying anything, just wanting to get home.

I have a message in to my doctor to see if I can switch back to Requip, even though I had augmented to the highest dose. I’m hoping that since I’ve been off of it for awhile, I can take it again.

So my questions are how can I convince my husband that my suffering is real and has anyone gone back to a medication and did it work?

As an aside, I had a hip replacement 5 years ago and I have very little RLS in that leg. I’m having the other hip done soon and I’m hoping the same will happen. The doctors have no idea why that leg improved.

Rustsmith
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Location: Pueblo, Colorado

Re: How To Get Husband to Understand

Postby Rustsmith » Sun Jul 07, 2019 4:50 pm

ymgap, 1mg of pramipexole is a very high dose for RLS. The FDA max for RLS is 0.5mg and the experts now say it should be 0.25mg. Some doctors will suggest spreading the dose out throughout the day to better control symptoms (sort of like what Neupro does). But this is really just delaying the inevitable, which is the need to get off of pramipexole due to augmentation (assuming you really need 1mg).

After augmenting on two different dopamine agonists, you really should not switch back to another one. You need to either just go with the Horizant or you will probably need to take an opioid. Many doctors resist the idea of opioids for RLS right now, but we can point you to documentation from the Mayo Clinic that explains to doctors why this is necessary. Fortunately, the dose required for RLS is very low (10 to 20 times less than what is given for chronic pain), so the chances of true addiction are almost zero.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 918
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: How To Get Husband to Understand

Postby stjohnh » Sun Jul 07, 2019 11:49 pm

ymgap wrote:... My problem is that since I get really sleepy on Pramipexole and can’t drive after I take it, I can’t participate in any activities after 4 pm. My husband wants to go out to dinner and I can’t because I’m miserable. I’ve had to give up several groups I participated in because the meetings were in the evenings. He doesn’t really understand. As I said, if I delay taking the Pramipexole, it takes hours to recover and if I take it, I’m sleepy and not enjoying anything, just wanting to get home...


ymgap, Steve (rustsmith) addressed your pramipexole dose, and I agree, you should get off it.

The problems you have with your husband sound exactly like those I had with my wife. She just doesn't get it. She understands it better now (IE she doesn't accuse me of not caring about her any more) but it has seriously interfered with our social life together. I don't have a solution for the "he doesn't understand" problem except for you repeating the problem to him time and time again. There are pamphlets on the RLS foundation web site (rls.org) that discuss some of these, but in my experience, only others with RLS can truly understand.

My problems have been helped by IV Iron infusions. I no longer have to take any of the regular RLS meds. I had been on a combination of pramipexole , gabapentin, dipyridamole, kratom, and medical marijuana every day until I got my iron infusions. Now it's almost like I never had RLS at all.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

Bridgercan
Posts: 28
Joined: Sat Jun 23, 2018 6:43 pm

Re: How To Get Husband to Understand

Postby Bridgercan » Mon Jul 08, 2019 5:13 am

ymgap wrote:If I wait an longer on either one, I can’t get my symptoms under control for hours no matter what I do. I’ve had RLS for 15+ years and have a great doctor. I’ve been on Requip and the Neupro patch (which I loved but it’s too expensive). My problem is that since I get really sleepy on Pramipexole and can’t drive after I take it, I can’t participate in any activities after 4 pm. My husband wants to go out to dinner and I can’t because I’m miserable. I’ve had to give up several groups I participated in because the meetings were in the evenings. He doesn’t really understand. As I said, if I delay taking the Pramipexole, it takes hours to recover and if I take it, I’m sleepy and not enjoying anything, just wanting to get home.


I too have to take my meds (Neupro patch/Horizant/Oxy) at very specific times, and if not, like you, it will take hours to get my symptoms under control. It’s similar to pain management: got to stay ahead of it.

I’m sorry to hear how your medications have lowered your quality of life—especially in having to give up social activities. I empathize too with the issue you’re having with your spouse. My spouse used to think my symptoms were psychosomatic or related to stress, until he saw me in the throes of augmentation last year. It was only when I was in crisis did he begin to see it as very real and serious. I was so sleep deprived and out of it that he had to drive me to my appointments, and I had to take medical leave from work. It was when the sleep specialist explained to him what was going on with me that I could see him begin to see my RLS as a truly chronic disease in need of long term management.

Another thing that really helped was us attending the RLS Foundation Symposium last fall. We both got a lot of information, made some connections, and it helped us to start talking about RLS in a constructive, proactive way. In short, attending the symposium drew us closer after a long period of us struggling. The struggle is still there, but we’re now able to talk about it much more constructively.

My hope is that you’re able to find a way to help your husband understand RLS is a very real disease, and finding successful treatment can be complicated, drawn out, and at times, elusive. And there’s no doubt medications come with their own complications and side effects. I wish you luck in finding a way toward better communication for you and your husband.

debbluebird
Posts: 2040
Joined: Mon May 21, 2012 3:27 pm

Re: How To Get Husband to Understand

Postby debbluebird » Mon Jul 08, 2019 8:33 am

My husband saw first hand what I went through. I was 58 and we had gotten married 2 years before that. I started augmenting just before I had both knees replaced. The replacements also aggravated my RLS and PLM's. He watched my jumping legs. It was really bad at the time. Next came multiple meds from Doctors not knowing what to do for me, followed by extreme sleep deprivation. I ended up having to retire at age 60 due to short term memory loss from the sleep deprivation. He has gone through it all with me and he is still supportive.
My suggestion is to educate your husband. Take him to your Doctor appts, have him read this forum. I hope he comes around for your sake.


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