Need help for mom

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T Brenner
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Joined: Wed Dec 18, 2013 8:18 pm

Need help for mom

Postby T Brenner » Thu Jan 09, 2014 4:03 pm

Hello and thank you for the welcome! I found this site to do some research for my dear mom who lives 1300 miles from me, wish I had a Lear jet! She is 72 and has suffered from this awful RLS for many years. A little history; as long as I can remember she has always had what she called "happy legs" most often in the evenings. I don't remember her saying she had the shooting pain along with it until she had her knees replacements, one twice, in her 50's. She was on Mirapex for years. When taken regularly it worked. In 2008 she fractured her back which only adds to the pain, she was taking pain meds for that and is still on hydocodone. My dear father was diagnosed with cancer and passed in 2009, (rest in peace <3) So with both of those life changing events added to the picture, she is suffering from depression and is on medicine for that. The Mirapex back fired and she started gambling, lip licking and was paranoid. So my siblings and I intervened and had her switch meds in late 2010. Sorry if I am rambling. The gambling is gone and she is more herself. Currently she is taking carbidopeda-levo, Gabapentin, Celebrex, levo-thyroxine, hydro condone, escitaloperam, trazodone and something for hormone replacement, calcium and magnesium. Wow! Scary!
With all of that she is going RLS crazy. She craves and eats ice all day. She has been checked for diabetes' which was negative. She has Nogales on her thyroid which they are monitoring. Her voice is very raspy and she has to continually clear her throat. (I'm never complaining about me again). She lives in a small town and sees the local doctor and a couple that come from a larger city about 150 miles away. She still works 3 days a week on her feet, which she claims helps her legs but hurts her back :(
After reading you wonderful blog, and hearing your stories I can relate and send my healing prayers! I see that there are several things that may help. First off the elimination of sugar, chocolate, alcohol, and caffeine. That may be a start, I'm cautious as to the teas etc... because of the other meds she is on. Lastly I looked up RLS specialist from your site and will talk to my mom about making an appointment and taking the long drive. Thank you for listening! :?

ViewsAskew
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Re: Need help for mom

Postby ViewsAskew » Thu Jan 09, 2014 11:42 pm

So sorry she has had to go through all of this!

In my opinion, she shouldn't be taking the levodopa-carbidopa. It's not considered a good candidate to take daily. It will cause the WED/RLS to worsen in at least 70-80% of cases. Not a risk most of us want to take!

First question is if she is still suffering from depression or not. It's possible that the escitilopram is actually making the WED worse (many ADs can). So, questioning that might be a good step. If she does need something, then a change to a different AD might be in order.

If removing or changing (or if it's not possible to change or remove) doesn't help, then you just have to cover those symptoms, if it is indeed increasing them. Gabapentin may not be strong enough to do that. A change to one of the sister drugs - pregabalin or gabapentin encarbil - might help. If they do not (and they can cause severe depression, so indeed watch out for that....and consider that the gabapentin is already responsible for the depression!

Opioids almost always control WED. My guess is that she's not taking much of it. Many of us try the other routes and finally end up taking opioids regularly. It may be something to consider for her.

Sometimes it's really helpful to just sort of start over. You can't know how depressed she is or how bad her symptoms are as long as she's medicated. You can't know if the medication is worsening the depression while other medication is helping, or what! It wouldn't be fun, but it may be a very good way to go in terms of her mental and physical health. Hard to oversee when you're 1300 miles away :-(.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

T Brenner
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Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Postby T Brenner » Fri Jan 10, 2014 1:21 am

Thank you so much for your input. I like your thought about starting over but will make sure she does under the supervision of her current or a new RLS specialist. One day at a time!

ViewsAskew
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Re: Need help for mom

Postby ViewsAskew » Fri Jan 10, 2014 2:11 am

T Brenner wrote:Thank you so much for your input. I like your thought about starting over but will make sure she does under the supervision of her current or a new RLS specialist. One day at a time!


Did you find the name of the specialist on the WED Foundation's website? If so, one caveat. These people are those who say they can treat WED. It doesn't ensure they are good at it. Many of the people on it ARE good. But, some do not know as much as they should when it comes to being current and up-to-date. The research changes what we know so fast that a good physician has to really read the journals. Being even a few years out of date can make for problems.

If you found the name on the Discussion Board, your chances are pretty good of the person being up to date and current.
Ann - Take what you need, leave the rest



Managing Your RLS



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.

T Brenner
Posts: 8
Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Postby T Brenner » Fri Jan 10, 2014 9:13 pm

Hi Ann,
Yes, I did find the specialist on this site. We will keep that in mind when we make the appointment. We will have a list of questions and also find out how long they have been treating WED patients etc..

badnights
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Re: Need help for mom

Postby badnights » Thu Jan 16, 2014 7:59 am

A quick test: If the doctor doesn't know what augmentation is, he has never treated refractory RLS/WED, and you should find someone else.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
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Re: Need help for mom

Postby badnights » Thu Jan 16, 2014 8:13 am

I hit send too soon ....
I wanted to say I feel horrible for what your Mom is going through~ The levo-carbidopa is most likely causing the worst of the RLS/WED symptoms, although the anti-depressant might be aggravating it too.

Are there any actual studies showing that sugar makes RLS worse? I think that's anecdotal. More often I hear of aspartame causing symptoms, that too is anecdotal; not everyone thinks sugar or aspartame worsens their symptoms. Alcohol and coffee - or was it actually caffeine? - I think were actually studied properly, I think Ann knows. I would be cautious about getting her to avoid things other than coffee and alcohol, maybe best to ask her only to avoid things that are known for sure, from proper scientific study, to aggravate symptoms.

One critical thing, that can be done even by her current doctor, is her blood should be tested for all iron-related measures, especially for ferritin, which is a protein that stores iron. If ferritin levels are under 100 in patients with RLS/WED, their symptoms are generally worse, and they are more likely to augment from medications like levo-carb, and pramipexole. For most people levels of 20 are sufficient, so many doctors aren't aware of the need for higher levels in WED; so ask for the actual number, don't just accept "normal" as the result. Supplementation with oral iron is simple and can alleviate symptoms.

I had a nasty experience with gabapentin, it affected my mood negatively and eventually plunged me into a number of very deep depressions. It is known to cause suicidal depression in a small percentage of the people who take it - so I really like the suggestion that maybe the best thing for your mom is start over, because she is on WED meds that can cause depression and depression meds that can cause WED...

I am glad you and your siblings are able to support and help her through this living hell. She needs you.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Need help for mom

Postby ViewsAskew » Thu Jan 16, 2014 8:58 am

I think caffeine is the ONLY food/beverage substance about which any studies exist.

Alcohol, sugar, aspartame - and anything else - are problematic for some per anecdotal evidence. If someone has enough cognition, they can probably identify these triggers on their own. Have coffee, see what happens, don't have it, see what happens.

And, these triggers can change! Sugar never bothered me. I have a friend who says that he has two triggers - sugar and not getting to bed on time. If he avoids those, he rarely has symptoms. I always thought that was so weird.

But, about a year or so ago, I'd notice that once in awhile (mostly during my period), if I had sugar, I could COUNT on worsened WED within about 25 minutes. Tonight, though, I just made Swedish Pancakes and put powdered sugar on them and noticed nothing. I have NO idea how often the sugar makes it worse or why it does. And, I'm not sure that I didn't do anything else different on those days that would have done it instead. The timing of it is pretty consistent, though, so seems there is some kind of a relationship - even if it's not causal.
Ann - Take what you need, leave the rest



Managing Your RLS



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.

EeFall
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Re: Need help for mom

Postby EeFall » Thu Jan 16, 2014 12:06 pm

ViewsAskew wrote:So sorry she has had to go through all of this!

In my opinion, she shouldn't be taking the levodopa-carbidopa. It's not considered a good candidate to take daily. It will cause the WED/RLS to worsen in at least 70-80% of cases. Not a risk most of us want to take!


At one time I was given the above drug for RLS by a neurologist. It made my already severe RLS over the top bad!

badnights
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Re: Need help for mom

Postby badnights » Fri Jan 17, 2014 11:36 pm

Yup, levo-carb is very scary for daily WED.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

T Brenner
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Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Postby T Brenner » Thu May 29, 2014 8:13 pm

Hello, it's been quite awhile since I have posted on here. I wanted to give you an update on my dear mother. I had been reading lots of blogs and reports on WED/RLS. In March I talked with Susan at RLS.org, Southern California RLS Support Group, she told me about Dr. Mark Buchfuhrer and his extensive knowledge. I contacted Stanford Medical which lucky for me is only 2 1/2 hours from me and was able to get an appointment for my mom. She was coming out for my daughter graduation from college in May and I was able to get her in.
The appointment was wonderful, the doctors listened for an hour and 1/2 to my moms history. They wanted to stop the Sinemet and Hydrocodone and see how she would react to Methadone. So they scheduled another sleep study at Stanford taking the Methadone. She stopped her meds the day of the study, by evening she was going NUTS! After getting "Wired" she took her first Methadone and a sleeping pill with no relief. She took another with a bit of relief. Finally sleeping with mask at 5 AM with the 3rd pill. To say the least it was a rough night. The techs were wonderful!! The next day, feeling exhausted, she took her morning Methadone dose along with a Gabapetin and Celebrex. We drove back to my place 2 1/2 hours away her legs CALM the whole way, and her back pain just a twinge! I am very pleased to report that to date the results are the same! I'm almost scared to get excited for her. She has not taken Hydrocodone or Sinemet since last Wednesday. She take 1 to 3 - 5ml Methadone pills along with her Gabapentin. She also is taking 325ml of iron a day. She flew back home on Monday more herself than she has ever been in years! Not shaky, no slurry speech, sleeping at nite for up to 7 hours! Her back pain is mild! So far so good! She will follow up with her MT doctor and the Stanford doctors in a couple weeks.

ViewsAskew
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Re: Need help for mom

Postby ViewsAskew » Thu May 29, 2014 9:08 pm

Dr B, as we affectionately refer to him here, has been a miracle worker for many of us here. I actually fly from Illinois to see him!

How lucky that it all worked out for her that she was coming and he could see her and get in a sleep study. Let's hope this works for her for a LONG time.

Since your mom has arthritis, she likely has inflammation in her body. There is a relatively new body of research that has linked inflammation with RLS/WED. This doesn't mean that is causes it, but they have been linked. Some people (unfortunately not me) have found that taking anti-inflammatory supplements - such are turmeric, sources of omega 3s, and many others) -, following an anti-inflammatory diet, and reducing sources of inflammation help reduce her arthritis and her WED and then meds can be reduced, too.

I imagine that Dr B made sure she took a test for serum ferritin. It doesn't always help, but up to 80% of the time, symptoms can be reduced when serum ferritin is increased. Let's hope the iron supplement increases it and has a positive result.
Ann - Take what you need, leave the rest



Managing Your RLS



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.

EeFall
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Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: Need help for mom

Postby EeFall » Sat May 31, 2014 5:04 am

T Brenner wrote:She flew back home on Monday more herself than she has ever been in years! Not shaky, no slurry speech, sleeping at nite for up to 7 hours! Her back pain is mild! So far so good!


Awesome to hear that she is doing so well! It is great to hear good news. She is going to one of the best doctors around and the combination of meds she is taking has helped many with severe RLS.

The only thing I would add is to be diligent about watching how she is doing because RLS can suddenly change. I don't know why, but some are able to take the same medications for years with success while others with RLS struggle monthly, even weekly with the dosages, or even have to change medications completely because it changes slowly or very quickly over time. When it does change it is difficult for the RLS sufferer to recognize it sometimes, mostly because after a few days with no sleep they just are not thinking correctly (I know that from having gone through it many times).

I hope your mother is fortunate and the meds will help her for many years.

T Brenner
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Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Postby T Brenner » Fri Aug 01, 2014 4:54 am

Good Evening,

I talked with my mom tonight. Her new medicine is working well for her RLS. (She is taking Methadone twice a day, Celebrex, Hormone therapy.). She is on a breathing mask at night which has helped tremendously. She is having bone pain, I'm not sure if it is a side effect. I couldn't find anything that would say it was. She says when she sits the pain shoots from her butte bones through to her legs :{. Anyone ever have this? She says aspirin will help for short term. She also said she has taken her old medicine -Hydrocodone - a few times. :{.

ViewsAskew
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Re: Need help for mom

Postby ViewsAskew » Fri Aug 01, 2014 8:45 am

So glad things have improved.

It sounds like she has sciatica, piriformis syndrome, a pinched nerve, a trigger point, or something similar. I have never heard of methadone causing something like this. That doesn't mean much, though. I'm not familiar with the other two drugs.
Ann - Take what you need, leave the rest



Managing Your RLS



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.


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