more of a vent

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jwkwak3
Posts: 25
Joined: Tue Feb 26, 2008 6:55 pm

more of a vent

Post by jwkwak3 »

A little background: I have been with RLS and PLMD for a long time. I think my initial diagnose was around 2005. I also have sleep apnea as of 2 years ago, recently diagnosed with hypersonmia and depression. I have no energy and I know I am depressed. My meds are requip 4mg twice a day, klonopin 4mg 2 hours before bed, provigil 200 mg once or twice a day as needed and of course my cpap, 20 mg of lexapro and my meyformin for my diabetes. Oh I almost forgot I also take atorvastin for cholesterol (shot up with diabetes) and metoprol for extra heartbeat.

So my issues are many and I struggle daily. I cannot do too much at one because my blood glucose will drop and then I am out for the day. I take the provigil to get through the day but it seems that it only works for about 3 hours so I take my second pill and then 3 hours later I am back to fighting to stay awake or needing energy. Hence the depression because I am so down about all of this. As I told my doctor I would not mind going to sleep and not waking up. I am not suicidal but there has to be more to life. A 42 year old should not be this tired, this exhausted. I have a family that cares for me and a good friend that understands what I a going thru as he has rls and the issues with sleep and energy, it helps that I x
Can talk to him. The cpap does its job it keepsd me from gasping for breath and keeps my apena events down, I can wake up feeling good but by the time my shower is over I am exhausted. I look forward to the day I can make it without the meds however I feat that will never happen.

OK enough with all this pity party. I just had to vent and get things off my chest.

sleepdancer2
Posts: 222
Joined: Sun Jun 29, 2014 7:46 am

Re: more of a vent

Post by sleepdancer2 »

You sound like me almost 10 years ago. I'm going to let those more familiar with dosing respond to your meds. Just in general, I can't help but wonder if a part of your daytime symptoms aren't from the meds. I'm guessing you had a sleep study 2 years ago when you were diagnosed with sleep apnea. I have OSA too. It might be worthwhile for you to undergo another sleep study, but this time with you using CPAP the full night at your prescribed pressure. That's really the only way to see what's going on now with your legs. Another study without your CPAP would likely be useless for your purposes. Are you fairly certain your CPAP treatment is doing what it is supposed to do? Not sure if you are one who follows the data on their machine or not. Have you already been tested for other disorders that can cause sleepiness? How about for things that MIGHT affect your legs, like Ferritin level, Vitamin D, Magnesium, B Vitamins? Some people on a dopamine agonist develop a problem called augmentation. If after researching you feel that could be you, do talk to your doctor about it. Sure hope you are able to achieve a better quality of life. I wouldn't have bet a nickle on my chances of even surviving this long - nor did I want to in my worst condition. I was pleasantly surprised when my downhill spiral turned around. It can happen.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

jwkwak3
Posts: 25
Joined: Tue Feb 26, 2008 6:55 pm

Re: more of a vent

Post by jwkwak3 »

HI sleepdancer2, generally I would agree with you on the dosing the meds but I have had the daytime sleepiness/lack of energy even at low dosage of my meds. As for the sleep study I had a split study two years ago at the request of my wife and cardiologist. I sleep with out a CPAP for about four hours and then they come in and put the machine on me. The doctor told me I would quite breathing at average of 2 to 3 times a minute. My machine has sd card but I do not need to take it with me to the doctor because it also has a wifi connection and my doctor keeps an eye on it. I just recently joined Resmed's wake up to sleep and they have a program that allows to view the results of my sleep. My goal AHI is less that five and I stay below 1 99% of the time. If I go go above the highest that has been seen is about 1.7. My pressure is at 15. My legs are controlled fairly well at the set dosage, I just hate taking the meds. I have had all the levels tested Ferritin, etc... and they seem to be fine. My biggest issue I have now is dealing with all the issues I have, I feel as thought I am just lost wandering through life with no purpose other than providing for my family. I have been depressed for years but did not tell anyone, my wife would notice something was wrong every once in a while and she noticed over the years my energy has dropped. I was like a lump on a log. I was not going to mention it to the doctor but I had been looking at counslers the night before, and the doctor opened the door Its like he knew, Heck he should know me because he has been my GP for almost 30 years. Anyway, I told him how I was feeling almost broke out into tears there and and enter Lexapro. I have only been on it for a week. The good thing about my GP is that he told me he had done all he knew to do for my RLS and that I should talk to my sleep doctor since he specialized in sleep disorders. I had mentioned to my GP for years about my lack of energy and nothing was done. My sleep doc prescribed the provigil and it worked great the first month. I am in month number and it seems to wear off rather quickly prompting me to take my second dose, which was to be only as needed, but I need it to make it through work. Speaking of work I work in Logistics and Supply Chain and have the responsibility of 9 locations (covering the freight ) and the deal with many carriers, I also schedule production at one of our sites, and I am the trouble shooter (as I call it) for our two ERP systems if I go by the company terms I am the Super User. So it can get a little stressful.I hope to one day return to normal, don't that is possible, but at least some state that can be tolerated and not be on so many meds, and return to a level of activity that I fell is appropriate at that wage.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: more of a vent

Post by ViewsAskew »

I only have a moment, but the amount of ropinerole (Requip in the US) is MUCH, much too high. If you need that much, you are surely suffering from augmentation - no wonder you are exhausted!

Definitely read about augmentation. There are posts about it all over the board - search on it using the search box on the top right of the page to find many, many posts.,
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.

Polar Bear
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Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: more of a vent

Post by Polar Bear »

Max recommended dosage for ropinerole daily is 1mg..... you are on 8mg.
You say your ferritin is ok, but what is the actual level. OK at 20 might be 'ok for most folk' but us RLS/WED sufferers are not 'most folk'. Check with your doctor what the ferrinin level reading was, it should be up around 100 - especially when taking ropinerole which is a DA.

If your doctor says he can do no more, but is willing to learn then the book Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. (second Edition) would be excellent for you and your doctor to work out where to go from here.
It would also educate him in the meantime and thus be able to perhaps help other sufferers.
Make sure to get the second edition of the book and use the information to push for your treatment.

Antidepressant medication takes about 6 weeks to work but I know that I felt benefit at about 3 weeks. Suddenly one day the cloud had cleared a bit, and I could feel some enthusiasm.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

jwkwak3
Posts: 25
Joined: Tue Feb 26, 2008 6:55 pm

Re: more of a vent

Post by jwkwak3 »

Yes I have read about augmentation, I have been feeling this exhaustion longer than I have been on that requip, much much longer. My regualr doctor was the one who stated he could not do anymore and told to discuss with my sleep doctor, he is the one that has prescribed the Requip as I take it now and Provigil. As for my Ferritin levels they were over 100 on my last test if remember correctly they in the 130's to 140's. My doctor was going to start me on supplements until he say my reading. AS for the book I will purchase when I have cash right now we are gearing up for a much needed vacation and I have to finish paying for the rental. It will be to be sitting on the beach in a couple weeks.

Also a side note about the requip I am not how the heck I would handle coming off it. If i miss one night of taking my wife is ready to divorce me(not really) but she complains, but she also understands what I am going through. I would flop around in the bed like a fish out of water and be up pacing the floors all night. I was on 1 MG years ago and it did not even touch my symptoms. 2 mg barely work, 3MG for a couple years but not great.

Polar Bear
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: more of a vent

Post by Polar Bear »

I agree that getting off a daily dose of 8mg Requip/ropinerole would be a major challenge.

I take 4mg daily (plus tramadol and codeine) and this dosage was reached when a daily dose of 4mg was considered to be satisfactory. I have tried to take myself off the requip and only lasted 3 days. It is generally accepted that a doctor's help and support is needed to get off the requip by prescribing an alternative medication to ease the way.
Perhaps when we did not get symptom relief at the lower doses of requip we should have been directed to a different medication class..... but I guess it was all a bit of guesswork.

Where I live we have no RLS/WED expert/consultant of any sort, and I really mean in the country where I live !!
Fortunately my GP will more or less work with me regarding treatment and using the book previously mentioned
However, just how my doctor would react to providing the medication required to get through requip withdrawal (and possible augmentation) is another matter. His general cooperation is appreciated but sometimes I feel a little like I am the blind leading the blind.

Your ferritin level is excellent and is really good news.

On the beach in a couple of weeks - yaayyy... isn't it great to have a holiday to look forward to. :thumbup:
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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