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Venus Insufficiency cause of RLS?

Posted: Wed Jan 29, 2014 5:43 pm
by Hopeful
Hi all,
This is my first post here, but I have read many of the topics and messages and appreciated the education and support.

I'm a 44 yr. old mother of 2 young children. I've had RLS for a long time (years) (+apnea). In the last year I've had 2 iron infusions. My symptoms subsided for a few months after the first one(iron sucrose), but my ferritin dropped and the symptoms came back. After my 2nd infusion (LMW iron dextran) my ferritin remains high (177) but my symptoms are still severe.

I started taking .5 mg ropinirole last fall but hate how groggy it makes me. I can't stay awake long enough to read to my kids or be with my husband. My family life is on shaky ground because they don't get what I am going through. Then I also do fun stuff like crash into the walls while walking down the hall because the ropinirole makes me off balance.

For supplements currently I am taking Cal-Mag, L-Theanine, Tumeric, & Grape Seed Extract. No booze and caffeine only in the AM.

I saw my sleep neuro yesterday. He gave me the updated Mayo algorithim & a long 2012 article from the Journal Sleep. He suggests that I take clonazepam or hydrocodone. The problem with those is that I seem to be super prone to brain fog, cognitive problems like memory loss, & daytime grogginess. In the past I've tried clonazepam and lorazepam, also gabapentin, & they all made me groggy. Hydrocodone scares me for probably the obvious reasons. I am really hoping and searching for a non-pharma therapy.

Now to my question: I get total (but short lived) relief from taking a hot bath with epsom salts (Magnesium sulfate) at night. My theory is that the hot baths bring circulation to my legs. I also wonder if this is why pregnant women & older folks have worse RLS, because of poor circulation. I found a study that claimed almost total resolution of RLS symptoms in people with poor circulation after vein treatment. Here's the link:
I am currently waiting to get a new-patient appointment at a vein clinic for diagnostic procedures to see if I officially have vein problems. My feet are always cold & I am sedentary, although the only other risk factor I have is a family history. Does anyone have experience with exploring this avenue (venus insufficiency or poor circulation, compression stockings, etc.)???

Yesterday my sleep neuro dr. totally dismissed the relief from hot baths as a placebo. I think his specialty as a sleep neuro may be blinding him to some other avenues. Oh yeah and he told me that I probably won't accomplish much in life due to RLS and when I started to cry he told me to see a therapist or join a support group. Super depressing.

In general I am a happy person with lots of dreams and ambitions. I am the person who arranges meals for all the sick folks at church. I volunteer in my church, kids schools, sports activities, and am normally a pillar for everyone else. I am an awesome mother and not afraid of pain. I feel like I'm pretty tough and I work hard to accept life's lemons and make lemonade. Lemonade just isn't happening for me today, so I am reaching out for some help. Thanks.

Re: Venus Insufficiency cause of RLS?

Posted: Wed Jan 29, 2014 8:17 pm
by ViewsAskew
Clonazepam is definitely something that can make people groggy - at least for a few weeks until you're used to it. Mostly, though, there isn't much science to back up that it's effective therapy. Hydrocodone can make people groggy, but most of us with WED find that it doesn't. It's odd, but we tend not to react to it that way. If it were me, I'd consider it. You may be surprised.

Hot baths work for almost all of us - even without varicose veins. Cold baths work for others. So many different things work, however, that it's hard to know why. It could be the distraction - we're terribly susceptible to distraction and heat or cold is a distraction - it changes the status quo and it seems to help us. Just as is doing a math problem, getting mad at your kids, doing yoga or playing a musical instrument. Your specialist is wrong about the baths in that they DO work for many of us and it's well documented.

The specialists I've talked to say that circulation is not related to WED. While some people are better after vein treatment, one hypothesis is that they do not have WED/RLS, but had pain/sensations from the vein issues that were mistaken for WED - as with WED, when they move around, the symptoms stop. Because it's similar, it's mistaken for WED. That said, if I had varicose veins, I'd absolutely consider the treatment. If it didn't help, then it didn't.

Compression is also noted to work for many. There seem to be two distinct camps in our members here. Those of us who find compression makes things worse, and those who find they make it better. Many find it helpful so it's absolutely worth a try. You can try an Ace bandage to start, or a tight pair of panty hose. If it works, you can by surgical grade compression stockings. It's definitely worth it.

I hear the frustration in your post and it embodies the collective sadness of all our members. Most of us come here feeling just this way. We get you and what you're going through. We really do.

One thing I noticed - your ferritin has dropped. According to Dr Earley's research, you need to know what your magic number is and then keep it there. It sound like you need another infusion. Do you think your insurance will pay for it?

Re: Venus Insufficiency cause of RLS?

Posted: Thu Jan 30, 2014 3:31 am
by Polar Bear
About 15 years ago I had treatment for veins in my left leg. Consultant told me it would not benefit my WED/RLS. And indeed it did not help.
Having said that my left leg is not as frequently troublesome as my right leg, and arms.
At present my left leg is getting to be nicely decorated with blue veins, pretty unsightly. I have been considering going to dr for a referral for treatment but my understand is that because it is 'only cosmetic' it will take about 6 years to get up the list. However, I don't say it is 'only cosmetic ', they itch like crazy , so much so that I'm afraid of doing damage such as causing a bleed.

Nothing to be lost by having veinous treatment. I have had the tests that indicate my circulation is ok.

Hey, I've even gone to a one-to-one session with a Fairh Healer. That didn't work either.

Re: Venus Insufficiency cause of RLS?

Posted: Thu Jan 30, 2014 3:37 pm
by Hopeful
Thanks for your replies. It is nice to know that others understand what I'm going through. I was able to get an appt for vein imaging next week, so I will hold off on trying anything new until then. I'm glad to hear that others have taken hydrocodone and been ok.

I watched the "Advances in Iron Treatment" webinar by Dr. Early & even got an IUD to basically stop my periods because I could not maintain my ferritin after the first infusion of iron sucrose. I also have been gluten free since last April with the (even if unlikely) theory that gluten was causing me to not absorb iron in my diet. My second infusion was low molecular weight iron dextran this past fall, and just a couple of weeks ago my ferritin was 177, yet my symptoms have been awful since before my infusion continuing now. My sleep neuro has concluded that raising my ferritin is not going to solve my problems. Have you heard of anyone needing a higher ferritin than 177 to resolve RLS? I am aware that too much can cause toxicity.

I guess if the vein route and/or compression stockings don't help, I'll at least have tried it before I start on the hydrocodone. I guess I won't get my hopes up. I've also tried tonic water and the pills from Western Reserve Labs. Hyland's Restful Legs used to work when my symptoms were milder, but not anymore.
Thanks so much. Take good care all.
p.s. How do you keep your spirits up? I'm having a tough time.

Re: Venus Insufficiency cause of RLS?

Posted: Thu Jan 30, 2014 7:19 pm
by Polar Bear
Hopeful - I am pretty sure that I've read somewhere that one of the experts in iron transfusion/ferritin level said that if it took ferritin at 300 to help the symptoms then so be it. But I can't confirm who it was said it.

How do we keep our spirits up.... I guess we just keep onwards and upwards. I have my days that are worse than others, and would give a great deal to be able to sleep more than 2 or 3 hours in one session. At different times you will see that a poster has found what is working (at least for a time) and you will see others who are struggling. We are here to encourage and support and try and help, we really do know what you are going through.

Re: Venus Insufficiency cause of RLS?

Posted: Thu Jan 30, 2014 9:01 pm
by ViewsAskew
Boy, the spirits up's not easy. Mostly I think of how far we've come in ten years, that we know so much more than we did. I remain hopeful that it WILL change for the better in my lifetime, even if not in the next year or two.

The work that they are doing at Johns Hopkins on glutamate is yet another key in our puzzle. Eventually, the puzzle will be clear and they'll be able to help us better.

I believe that Polar Bear is correct - that you may need ferritin levels very high. It helped once and that makes me hopeful it would work again....but maybe it wasn't the infusion that helped that time, I guess you can't know, can you?

Can you get to Johns Hopkins to be part of their research studies? They would be able to answer any questions about the iron while you were there. I know many of us can't get there, but maybe you're not that far away or have an extra plane ticket lying around :-).

Re: Venus Insufficiency cause of RLS?

Posted: Thu Jan 30, 2014 9:09 pm
by Rustsmith
I called Johns Hopkins a couple of weeks ago to volunteer. I was told that they have enough RLS patients but that they are still looking for non-RLS volunteers. They are still taking RLS names for their standby list in case something happens with someone(s) on their list. However, I also got the distinct impression that if one of us was to volunteer AND could provide a non-RLS volunteer, that might get you priority consideration.

Re: Venus Insufficiency cause of RLS?

Posted: Fri Jan 31, 2014 6:05 am
by badnights
Your sleep neuro should be shot for making depressing and impossible-to-know predictions about a patient’s life. But please use your proof of his ignorance re the hot bath to suggest his ignorance about your future. The hot water sensation is extremely pleasant (I sometimes wonder if that’s what people without WED always feel like). It might work by distracting the mind from the WED sensations, as some doctors have suggested, but it seems that the WED sensations are actually gone while the hot-water sensation is happening.

Please avoid the clonazepam if you get groggy easily. It does nothing for the WED sensations, it only makes you sleepier. If your WED is strong enough, it will turn you into a walking zombie who is in an agony of torture. Remember, WED sensations are brought on by relaxation. Clonazepam is very relaxing.

You have no good reason I can see to avoid the hydrocodone. The only problem I see is that it might not be strong enough. Also like any medication you might get side effects that are obnoxious. But many of us find that opioid medication does not make us drowsy as advertised, and in fact it has the opposite effect on some of us.

But as for the vein thing – search here for vein or varicose, because I recall someone posting that they had improvement after varicose vein surgery I think ….. and for sure, there are links to a site where doctors claim to have relieved WED by operating on varicose veins – also there was another one to do with a foot operation of some kind that eliminated WED symptoms in the recipients of the surgery.

Re the ferritin , yes, I heard Dr. Earley in the seminar saying that he would not hesitate to give infusions to someone with WED whose ferritin was 200 or under. Over 200, he would have to look at other factors before proceeding. So as Ann said, you may not have hit your sweet spot yet. Dr. E’s protocol, as I understand it, is to repeat the infusion after 4-6 weeks, a number of times until such time as the symptoms improve. At that point your ferritin is measured and that number is your goal , the level of ferritin you want to stay at.

Re keeping hopes up - well, this place kept me from stabbing knives into my legs. I don't know how it works, but it really helps to know you're not alone. That other people know exactly how you're feeling. That it's REAL.

Re: Venus Insufficiency cause of RLS?

Posted: Fri Jan 31, 2014 6:58 am
by ViewsAskew
Do you know what your ferritin was the time that it helped? If they took it then, before it decreased, you'd already know your "sweet spot."

Re: Venus Insufficiency cause of RLS?

Posted: Fri Jan 31, 2014 3:37 pm
by Hopeful
First, hugs to all of you who have taken the time to respond and to offer suggestions. I will check out all of them.

After my first iron infusion my ferritin was 161 and I was symptom free for a few months. Now it is 177 and my symptoms are bad. Still, I'll check into what is the highest ferritin that would be considered ok.

Thanks for saying that my sleep neuro was full of b.s. That was like a kick in the gut.

I will try to educate myself on glutamate. I am intrigued by that, because for my whole life I have been a light sleeper- awakened by the slightest sound. So it makes sense that my brain might be more aroused. My daughter is the same- she would wake up easily as a baby and it was exhausting for me. I blamed myself for "causing" her light sleep by keeping the house too quiet.

Thanks for the feedback on clonazepam. After I tried half a pill 2 nights ago I felt groggy for 2 days. Then I saw that the half life can be up to 50 hours. I'll consider hydrocodone and read up on it more.

I also decided to do whatever is in my control to feel good and create health. Going to try to get outside for a walk for some exercise, even though I don't feel like it. Eat more veggies, and get a nice haircut so I can look my best.

Hugs to all-

Re: Venus Insufficiency cause of RLS?

Posted: Fri Jan 31, 2014 5:42 pm
by Polar Bear
So, your ferritin is actually higher than when the infusion previously worked for you.

And there is nothing like a nice haircut to lift the spirits..... go for it.

Re: Venus Insufficiency cause of RLS?

Posted: Mon Feb 03, 2014 6:17 am
by badnights
Definitely, you need to treat yourself. Life with this disease can be very depressing when it's untreated, so someone has to treat you to something nice!

Life can get so much better with the right treatment, and all you need is two things; one is a doctor who'll work with you and second is that both of you need to be willing to learn and to try a few things. You might already have that doctor, despite his insensitive comment about your future. He offered hydrocodone after all, and a lot of physicians are scared to offer opioids for this, despite all the evidence that it's safe and effective for most of us. He made that presumption about the bath too, but I bet if you tell him how you feel, he will learn from you. He may not accept your conclusion that it's circulation related, and I don't blame him (it's too much of a leap to go from hot water improving it to assuming it's circulation). But at least he might accept that hot water causes a physiological improvement.

Hope you get your treatment sorted with very little more experimentation.

Re: Venus Insufficiency cause of RLS?

Posted: Wed Feb 05, 2014 3:05 pm
by Hopeful
I have an update in case anyone is interested...

Yesterday I had an ultrasound of both legs in a vein clinic. The result was reflux in the valves of both legs. I was told that this is actually very common, even though I don't fit the typical profile (no varicose veins, never smoked, not diabetic, never been overweight). Then I had a consultation with a vein surgeon. She was amazing. She said "I don't know if I can help you, but I am totally willing to walk with you to see if I can help." She said "I have heard from some patients that their symptoms get better, but since I don't follow up with them long-term, I don't know if this is a long term solution." She said that I was a candidate for endovenous laser ablation surgery, which is a minor and safe surgery, but she had no idea if it would help or not. The study I am referencing (in an above post) showed about an 80% improvement in people who had the surgery, but of course they had a vested interest in improvement, since they went to the trouble of having surgery. The measure was the self-reported IRLS scale, not a sleep study. The other thing about the study is that the control group did not have any surgery. It would have been more reliable if they had undergone a "sham" surgery.

Anyway the first step is to try compression stockings for 2-3 months, so I will give that a try.

One other suggestion she had was to keep your legs elevated- like extended if you were sitting up in bed or sitting with sideways across a couch- for a whole day. It's ok to take a short walk & use the bathroom, but the idea is to not let any blood pool in the legs through gravity. Then see if the symptoms are better that night. I am going to give it a try this weekend.

I have tried the hydrocodone a couple of nights, and I haven't felt as groggy in the morning as I feared. I didn't feel like a had a really good nights sleep, but it wasn't too bad.

thanks to all and best wishes.

Re: Venus Insufficiency cause of RLS?

Posted: Wed Feb 05, 2014 6:55 pm
by Polar Bear
You sound well pleased with your appointment and it will be really interesting to hear your results.

I'm wondering how easy it would be for me (WED 24/7) to stay sitting with legs elevated for a whole day.

Re: Venus Insufficiency cause of RLS?

Posted: Wed Feb 05, 2014 8:17 pm
by ViewsAskew
Sounds like you have a lot of information, a good doctor, and a few options - wonderful!