Specific doc at Mayo MN + How to Choose and Talk to Your Doctor

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
badnights
Moderator
Posts: 4370
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specific doc at Mayo MN

Postby badnights » Sun Sep 18, 2016 8:50 am

Oops, I missed your last questions. I did not notice a distinct difference right away, but after 3 months on the Wahls diet I lowered my hydromorph contin from 18-21 mg to 15 mg daily. Then after a total of about 9 months I Think, I lowered to 12 mg, & I am now on 9 mg a couple of years(? I think) later, but I've added in pregabalin or pramipexole (alternating 5:2). The initial improvement - from 18-21 down to 15 - had to be stictly diet because I wasn't doing anything else different.

After that, though, I was also taking treatments for SIBO (small intestinal bacterial overgrowth), healing the gut lining, etc. 10 or 15 different supplements at one point. Maybe some of them helped too.

However, I also am suffering more symptoms than before, and my circadian offset is more severe. So some of the medication lowering was simply a choice to live with WED symptoms and a bigger circadian offset rather than foggy brain and a normal schedule.

I don;t really know why I'm only "sort of" on it. I started going to a HIIT gym (high intensity interval training) and couldn't recover from the workouts while I was in ketosis (the ultimate level of the Wahls diet, where you burn fatty acids as your primary fuel rather than glucose which comes from carbohydrates and proteins). So I added starchy veg and some grains (rice and quinoa). Then maybe I just rested on my laurels?? I slacked off on the 6-9 cups of veg per day, I maybe eat only 4 or 5, and I slacked off on the organ meat 3x weekly (it's hard to get and I get sick of it). And I'm supposed to have fish 3x weekly too, but I tend to only do that when my friend is fishing! The extreme lack of carbohydrates, I guess, was not working for me, and once I let that part of it slide, other parts started to slide too. I want to get back on the vegetables at least. But there's a psychological issue too, in that I wonder - would the GAPS diet be better? And how can I possibly know?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Sun Sep 18, 2016 12:44 pm

I'll see if my library has the Katz book. You've given me a great start - I'm going to see what the turnips do. I'm not sure I understood the double biggies part. Do you use those instead of a jar to ferment things in or for storage after?

badnights
Moderator
Posts: 4370
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Home Fermentation

Postby badnights » Mon Sep 19, 2016 4:24 am

Sorry, I should have been clearer. A baggie full of water can be used as a weight to keep the vegetables from floating up above the surface of the water. If they're not submerged, mold can grow on them. And double the baggie in case one of them springs a leak - it would dilute your creation and perhaps make it not salty enough, also if you;re using chlorinated water in the baggies, you don't want that in your culture.

The ratio is 3 Tbsp non-iodized salt to 4 cups water, but try 2:4 it should work. Pickling salt and sea salt are better than table salt because iodine can be toxic to the good bacteria.

I didn't mention that the water should be non-chlorinated, so either buy bottled or distilled, or let it sit 24 hr or boil 5 min then cool before using it.

I have also read that celery juice can be used instead of salt, google "lacto-fermentation celery juice" or lacto-fermentation salt-free
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Mon Sep 19, 2016 12:03 pm

Beth, thanks for the clarification on the double baggies. I'm going to get some celery juice and ferment some turnips!

How's does the pregabalin work? My neurologist just prescribed it to replace the pramipexole. The dose seems high to me - 25 mg three times a day. I'm also very concerned about the possible depression side effect (& the weight gain). I have severe depression which is treatment resistant and has made me suicidal. I was on mirtazipine (Remeron) and I gained 40+ lbs in 3 months. I was already about 20 lbs overweight so I ended up "obese". I've lost 30 lbs but seem stuck. And I refuse to gain more.

It's hard to stay on a restrictive diet like Wahls, Swank, or Atkins. My husband had diabetes and we did the Berstein diet for about nine months. I was so carb starved!

badnights
Moderator
Posts: 4370
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specific doc at Mayo MN

Postby badnights » Tue Sep 20, 2016 6:02 am

Pregabalin is a poor choice for someone with severe depression, but you can try it and see. Since you're keenly aware of that possible side effect, you will know enough to stop it if you feel mood swings. You could clarify with your doc beforehand how you are to stop it in that case - i.e. is cold turkey ok.

0.75 mg is not very much for this med. The amounts are very different than pramipexole amounts, and 0.75 is a beginner dose. I take 0.75 5 nights a week. It doesn't do anything that I can tell for the sensory abnormalities, but it helps me sleep. I seem to get a deeper, more refreshing sleep when using it.

I am not keen to up the dose because I was made severely depressed by gabapentin. No such effect from the pregabalin it seems. I've been using it fairly frequently - a few times a week - for almost a year now, but on a schedule only for the last 4 or 5 months.

Diets are hard. I seem to be able to put myself in a zone of suffering and accept that as my lot, that's how I deal with diets. But still. When I feel ravenous all the time, I know I need something - but what? Fat? Carb? Protein? argh! I survive Wahls (or whatever it is I'm doing) by making oodles of Wahls "fudge" (coconut oil, nuts, and dried fruit in equal proportions, half as much shredded coconut, an avocado, cinnamon, nutmeg, vanilla - process, smear on plate, refrigerate) and other dairy-free, gluten-free, nut-based, good-fat-rich treats. But the time I spend making food is out of this world! And sometimes I'm so tired and so hungry, I can't bear the thought of having to cook or prepare food - - but I have to, otherwise there;s nothing I can eat. If I can get the ambition, I spend a day making lots of different treats and freeze them. But I go through them so fast!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Tue Sep 20, 2016 12:38 pm

I did a little more research on pregabalin and think it's probably not the best medicine for me plus it's crazy expensive!

Last night I took .125mg pramipexole at 6pm and another .125mg at 9p. With .5 mg clonazepam at 10:00p, I was asleep by about 10:45p. I woke up at 6:30 am, RLS free! Gonna repeat the spaced out double dose tonight with a smaller dose of clonazepam and see what happens.

It is so time consuming to eat healthy. The weight goes on so fast and comes off so slowly! Your Wahl's fudge sounds good - I'd probably eat the whole plate in one go. ;)

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Tue Sep 20, 2016 12:42 pm

Forgot to ask: depression sneaks up on me. If the gabapentin or pregabalin do increase the depression, is it obvious? I'm kind of teetering on the edge anyway although I started taking Vitamin D about few weeks ago and have noticed a BIG difference. My energy level has increased, too!

ViewsAskew
Moderator
Posts: 14645
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Specific doc at Mayo MN

Postby ViewsAskew » Wed Sep 21, 2016 6:17 am

Vitamin D helped me a LOT. I don't think I realized just how many times I've gone back and forth between mild and moderate depression to being OK over the last few years. It does sneak up and you just don't realize it - sometimes (for me) until I was out of it. The foray into severe depression also helped me realize just how often, in retrospect, I'd felt less happy than my usually sunny self.

Some people get suicide ideation with this class of drugs - pretty easy to spot! For me, it wasn't that strong. I just had no energy, didn't care about much, didn't want to go anywhere, do anything.
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.

badnights
Moderator
Posts: 4370
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specific doc at Mayo MN

Postby badnights » Wed Sep 21, 2016 9:11 am

Depression could manifast in different ways I think. My first experiences with gabapentin-caused depression, within weeks of starting it or maybe a month, were very obvious mood swings caused by taking the medication an hour later or earlier than the day before. Wild mood swings. It didn't take me long to realize it was the meds. After that, things blackened slowly, til eventually I was looking through black at everything and I'm not sure if I realized why. I knew somehow the whole time that I needed to get off the gabapentin.

Then the episodes of suicidal ideation started. The first one was a few days long, I forget how long but I remember clearly that one day flying back to camp at 5 PM, the depression disappeared. That suddenly. And I was immediately filled with fear because the only reason I hadn't killed myself was because I hadn't been able to dredge up the energy to do it. All my usual tricks to get me thru a depression had been ineffective. I usually think of what it would do to my kids, or I simply remind myself that it's just a bunch of chemicals in my brain and it will end soon, I just wait it out, ignore it so to speak. None of that worked.

The first severe/suicidal episode one was the longest, but it happened twice after that over the next few months. It was January before I got to see the neurologist - 9 months of hell on suicide med. I would do things differently now, but I was new to the medication game and didnt know how to talk to doctors. I assumed that what I said was heard, but with many people, you have to be very explicit and have to repeat it many times before it;s heard.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Polar Bear
Moderator
Posts: 6702
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Specific doc at Mayo MN

Postby Polar Bear » Wed Sep 21, 2016 10:24 am

badnights and Views - Beth, that sounds horrific.

Something for everyone to be very aware of and sorry that you both suffer/suffered in this way but very much appreciate the information from your experiences.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
Moderator
Posts: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Specific doc at Mayo MN

Postby Rustsmith » Wed Sep 21, 2016 11:14 am

I will add my one bit of advice based upon what happened to me this summer. Gabapentin doesn't cause depression for me (I have been on it for years). But I suddenly went into a deep depression where suicide ideas were starting to sound good. I called my doctor's office because I was certain that it had to do with one of the medications that I was taking, but my research didn't indicate which one. I got the standard front office run around where they take a message and tell you that the nurse will call (who never does). After a week of misery and daily calls, I finally got one of the senior receptionists. When I mentioned the word "suicide", she kindly asked to put me on hold and then found a different doctor's nurse who would talk with me. That nurse knew that immediate action was necessary and contacted my doctor (who was working at a different hospital that day). I received a call from my doctor within the hour and we were able to work out a change in medication. The key was actually using the word "suicide". Talking about severe depression didn't spur action but speaking of suicide really gets their attention.
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.

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Wed Sep 21, 2016 2:49 pm

Once again, you all have more answers than my doctors! Saw my primary care yesterday for a recheck on my blood pressure (had months of hypertensive crisis blood pressure and way-too-fast heart rate from nortriptyline, now resolved). He said he'd never treated someone with RLS as severe as mine and was 100% not interested in prescribing any kind of opiate. In fact, he wants me off my very low dose oxycodone because "studies show that it's not really effective for long term back pain."

I asked him about the possible depression side effect of Pregabalin and he said the risk is very low and he thinks I should try it. He's going to try to get a coupon for me but I looked on the Pfizer site and they don't do coupons for patients on Medicare so I'm not sure he'll have much success.

I cried during the visit trying to explain the pain, the RLS and the sleep deprivation. He recommended I go back to a psychiatrist/psychogist. He definitely did NOT hear me say "My mood has been much improved since I started taking a megadose (4,000IU) of Vitamin D and eating better. I'm sure better sleep would help, too."

And, no neurologist - not his fault but there simply are too few in the system.

I have an appointment with the Sleep Clinic for 10/25 with an RLS doctor!!!!!

I did the split dose of pramipexole again. Still had to take .5mg clonazepam to actually fall asleep. No RLS until 6 am. So, that's really good.

I'm picking up the script for gapapentin today. Hopefully, it'll work like it did for so many years and won't cause edema again. Then I can alternate it with the pramipexole. I think I remember it making me very sleepy so maybe I can go without the clonazepam and use that as another alternate night medicine to stave off pramipexole augmentation.

Oh, had a Pilllsbury cinnamon roll 20 minutes ago (rewarding myself for hitting a 10 lb weight loss goal. I know. Makes no sense but for every 5-7 lbs I lose I give myself a "treat day". Totally wrecks the breaking of my sugar addiction but I'm still trying to figure out no cost rewards. I've lost 32 lbs since April. Another 30 lbs and I'm going to start a GoFundMe for excess skin removal or a face peel or something really big like that. Just kidding!) Anyway, 20 minutes after, the RLS is back in my arms and trunk, too. So, those are on my list of RLS-causing foods along with white bread, pasta, crackers (except Triscuits), chocolate, pancakes, snickerdoodle cookies, and ice cream.

Thank you especially for the info on how medication induced suicide ideas start. I'm sorry you've had to experience it. "I had a friend" who was suicidal but always said she wouldn't do anything that would cause so much pain to her family until one day she just couldn't even think about them - not because she was being selfish but because the blackness shut everything off. A very caring doctor found her a place in a hospital immediately. But, she knows, now, that suicide occurs because there is no space for rational thinking in a depression that deep.

You all have been the epitome of kindness and have shared a wealth of truly useful information. If I knew you IRL, I'd give you each the biggest hugs I could. Hopefully, there is something in my experience that helps someone else.

ViewsAskew
Moderator
Posts: 14645
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Specific doc at Mayo MN

Postby ViewsAskew » Wed Sep 21, 2016 9:35 pm

You never know - one of these days we could meet in real life :-). I met Steve last spring - just happened that I was going to a conference for work that wasn't too far from him and from the Foundation. We drove to the Foundation's offices and met the staff, too. It was really nice to meet them all.

Sometimes sweets trigger it for me - most not, but I can never be sure why/how. I can go months without issues then one night have a sweet snack and the RLS is off the charts in about 10-15 minutes. Very odd.

Hope that time flies between now and your next appointment. Your GP is clearly not on the same wavelength as you likely wish he were!
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.

badnights
Moderator
Posts: 4370
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specific doc at Mayo MN

Postby badnights » Thu Sep 22, 2016 5:52 am

There is already lots in your experience that will help people, and I hope you contuinue to share your thoughts and feelings here. And the more hugs, the better, virtual or not!

I cried to read of your friend; how very fortunate that she could contact the doctor when in that state, and that people took her seriously.

I cried during the visit trying to explain the pain, the RLS and the sleep deprivation. He recommended I go back to a psychiatrist/psychogist. He definitely did NOT hear me say "My mood has been much improved since I started taking a megadose (4,000IU) of Vitamin D and eating better. I'm sure better sleep would help, too."

As soon as doctors see crying, they try to send you to a shrink. Perhaps an improvement from years ago when they didn't recognize depression, but the pendulum has swung too far the other way. Not all crying is due to depression as a disorder on its own; sometimes our lives are worth crying about! I had that happen to me, too. Helloooooooo!! I just need sleep!

And you're right, too often they focus on one thing and miss the other things. Not just doctors (I remember a frustrating incident with a hairdresser when I was in my 20's) but it's so much more important to us when it's a doctor. A piece of advice, which is in line with what Steve related about having to be explicit: Statements like "I'm sure better sleep would help, too" are way too indirect. You could lead off with that, but when no response is made to it, insert it in again more directly "No, actually I'm not getting anywhere near enough sleep, and I need better sleep for any of this other stuff to start getting better. How do you propose to make sure I can get enough sleep?" You end with a question that asks what his plan is for dealing with the problem (the very explicit problem).
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Thu Sep 22, 2016 7:43 am

I have a hard time being direct. And the minute I started crying I knew where it was going to go. I could see the doctor's gears: "Hm - middle aged, overweight, disabled woman with a history of severe depression. She needs an anti-depressant." Plus I forgot to remind him that I have pseudobulbar affect (aka emotional liability) from the MS. I cry or laugh uncontrollably and inappropriately. I can't take the only available medicine that might help because it has dextromethorphan in it. But, that visit is spilled milk.

So, looking forward:
I'm going armed and direct to my sleep clinic appointment in October. I'm taking both my RLS log and the summary and I'm going to practice "I am not getting enough sleep and I need more and better sleep for my physical and mental health. What do you propose to help me get that sleep?" I also have to figure out how to condense my RLS and medication history so he understands I have severe RLS, I've tried two dopamine agonists and augmented on both, and we have to be very careful with the antiseizure medications because of my depression and previous suicide ideation.

How do I share what Dr. B said? Do I take his emails with me?

Can I just put you all in my pocket?

OK, clonazepam starting to hit. I'm not sure this makes sense but I'm getting too foggy and slightly weepy. Night all! I wish sweet sleep with quiet legs for everyone tonight!


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 2 guests