RLS and Hypertension

[jul2873]

Hi Everyone,

This may be a topic that most of your know about, but it is new to me. I've had RLS for probably 40 years (I'm almost 80) and during this time have seen many doctors that I've discussed it with. During the exam, they always take my blood pressure, but I've been pleased and relieved that it has almost always been good--usually around 120 over 70. I do have high cholesterol, and that is the subject that always comes up, because I don't tolerate statins well.

About two weeks ago, I woke about around 3 am, got out of bed to walk to the bathroom, and instead walked into a wall. I was afraid I was having a small stroke, and so went to my office, and took my BP. It was really high, around 190 I think. So I went and got some kratom, to quiet my legs, and went back and took my BP again. Still high but coming down. By midmorning it was down around 120 again.

So then I started taking it when I got up in the night, which was usually 2 or 3 times. I noticed that if my rls was bad, my BP was usually high. After walking around a little and taking kratom, it usually went down quickly. I see my Primary Care doc in a couple of days, and will talk with her about BP medication.

But I'm really curious that no doctor has ever mentioned BP to me. I went online and searched PB and hypertension, and some articles came up. Apparently it is starting to be well known that RLS is associated with high nighttime BP.

I'm wondering if any people on this board have had this experience. And I'm really wondering if one causes the other. My doctors (a Neurologist and a Vascular Surgeon because I had a TIA two years ago) are very concerned with cholesterol numbers but never mention BP--Certainly never say I need to have it taken at night. I don't think I've ever had it taken at night until two weeks ago, when I did.

Anyone else with nighttime hypertension?

[Rustsmith]

Sorry, but I cannot help with that. My "normal" BP is low (90/60), so I get concerned when the doctor's staff checks it and I am at 120/70. I have complained about it to my GP and was told how "lucky" I am. I don't feel lucky when I nearly pass out when I get out of bed or have been sitting for a long time. I have blacked out in a couple of dangerous situations (once I was 20ft up in a tree and lost my vision but not consciousness). My doctor's advice was not to get into those situations (that was lots of help - NOT!).

[jul2873]

Steve, it's good to know that hypertension doesn't always go along with RLS. When I was in college, many years ago, a doctor put me on meds to raise my BP as it was "too low" then. But raising it a "normal" level made me very jttery, so I stopped taking it. Of course, now I'm wondering if, in fact, I had high pressure for all the years I had RLS. No one ever checked it at night. The BP is highest now when a severe rls attack wakes me up. But I have been having severe attacks for 40 years.

[jul2873]

I thought I should update. I saw my primary care doc and she said she figured that the RLS was causing the high blood pressure at night, and that I needed something more than kratom, since it was very important to control the RLS. So she prescribed ropinirole, in spite of my trying to talk about augmentation. She said she had never seen it, and didn't believe in it (I think most, maybe all, of her patients who take it are Parkinsons). She's a doctor I like very much and is generally very helpful, so I just let it go. But, because she was worried maybe she was making the wrong call on the blood pressure, she set me up with a cardiologist.

I saw him a few days later, and he said he had never seen RLS causing high blood pressure, but at any rate he wanted me to take some blood pressure meds, along with a higher dose of statins,. I'm afraid of statins but he told me to try them, and call him if I got side effects.

I took one pill of ropinirole the night after seeing my primary care doc. It did seem to take care of the RLS, but my blood pressure was as high as ever. The next night I just took the blood pressure med (and kratom) and everything was fine. My blood pressure was fine and, as usual, I got up two or three times with RLS.

So I'm dropping the ropinirole, and sticking with the blood pressure meds. I'm getting no side effects from them so far, nor from the statins. And, really, I think I'm as happy as I can be with kratom. I would be getting up a couple of times every night anyway to use the bathroom, and the kratom does take care of the RLS.

I do feel really bad about my primary care's disbelief about DA's, and I'm going to need her to arrange for an iron infusion soon, as my ferratin is dropping. So I'll see. But damn it! I wish the medical people would get RLS right!!!

[Rustsmith]

jul, the problem with RLS and doctors is that RLS is not taught in medical school. As a result, your GP's only source of information about RLS has been her pharmaceutical company reps. They play up the benefits of their products and obviously will fail to mention any negative side effects. Most GPs also only treat mild to low moderate RLS, which may only require one or two doses of a DA per week. Even the generalist neurologist who treats my migraines doesn't believe that augmentation is an issue and couldn't understand why I wasn't interested in trying carbidopa/levodopa after I told her how I had augmented on pramipexole and rotigatine. She was supposed to be the best neurologist in town, but I fear that she has never seen a severe case of RLS, much less a very severe one like me.

Also, occasional doses will not cause augmentation and some people are able to take them for years without problems (and others for only a few days). If your GP seems like the type of doctor who wants to learn enough to help her patients, you might print out a copy of the document that the link in my signature points to and highlight the parts about DAs and why they are now the third tier treatments for RLS due to augmentation.

[jul2873]

Thanks, Steve. That's really a helpful reply. It's especially helpful to know that I might be able occasionally to take a DA.

[Frunobulax]

Interesting. My bp is usually pretty good (120 to 70), but sometimes fairly low (90:60 in rest phases) and rarely high (150:90 in stress phases). Also I used to have much higher bp before I went to a low carb diet.

Is there a cheap but reasonably reliable way to monitor bp in the night? Smart watches perhaps?

[debbluebird]

I have a wrist B/P monitor. It works great. Easy to use. Not too expensive.
Regarding high BP at night.
I have severe sleep apnea as well as severe RLS. Recently my cpap machine broke. 3 months before I got a replacement due to several set backs.
Anyway, I noticed that my BP goes up at night because of the sleep apnea, without the machine. I'd take my BP as soon as I got up and it would be high. 147/80. After taking my meds, 2 hours later it goes down.
Also my BP can be low mid mornings. My lowest recently was 84/ 50. I get light headed when it's low.
Right now my RLS is controlled. I am past taking a DA and methadone. I now take buprenorphine and gabapentin. My last episode was last Sept.

[jul2873]

I would second debbluebird's suggestion of a wrist b/p monitor. That's what I use, and I think it is accurate. But I'm just wondering now how many rls people have high nighttime b/p. The pill I take right before bed is completely controlling it now. But I may have had untreated b/p for years, since no one ever checked it at night, or suggested that I should.