Self-diagnosed

[Calgary Cowgirl]

I have tried many things over the years with little to no help. Just lately I have taken to educating myself - u are right that anti-depressants can cause/increase RLS sympotms something to do with receptors uptakes - that can increase our symptoms - my doc finally prescribed a strong strong sleeping medication - Seroquel - it zonks me - since I have been sleeping well, even my eye bags are gone - my legs seemed to have calmed down considerably - it's almost as if they have been given a sleep holiday. They are now rested as I am and I find a 100% turn around. I read that alot of RLS suffers suffer from lack of sleep and there does seem to be a correlation between rested sleep and discomfort levels. This medication (Seroquel) sends me flat on my patouche about 45 minutes after taking it and I sleep for "8-10" hours !!!! I just recently saw an internist for my legs and he has had good success with his patients when treating them with clonazepam - an anti convulsant musle medication taken at aproximately 6 pm to relax the muscles followed by the Seroquel. I even had a "cider" last night and it didn't effect me. I appreciate we are all different but if this has brought me relief after so many years then it's worth investingating - I also decreased my Effexor from 300 mg per day to 75mg - I was getting depressed due to lack of sleep therefor lack of energy and lack of living life - yuc yuc ycu...I'm also having my varicose veins treated - appears to be a correlation between that and RLS. See lots of doctors - not just one - but take in your reports from the Net - if they are a good doctor they will cheerfully let "U" educate if it means help for you - Also have your ferritin levels checked there appears to be a direct correlaiton to lack of iron and RLS too -
Hope this helps - feel free to ask any questions becus I have been around the block and back again many times over the last "20 years - yuppo 20 years! I have posted previously here as Calgary Cowgirl - not sure how my name is showing here - it just maybe as Guest Hang in there -

[jumpyowl]

Thank you Ruby and Eric. This is what this site is all about - sharing.

So I quickly share something else.

As I mentioned, now I am taking Hydrododone (5/500) with my family doc's blessing. A minor problem is that I had taken (7.5/350) before and I know it is more effective. And he only wants me to take one at night. which does not quite cut it.

Still it is better than nothing. So I am trying not to take anything else. However, I observed something which may be important (by this I mean it may be more generally valid for others rather than just for me).

If I take hydrocodone every night (lately) or whenever I do not feel quite right (mostly in my legs) then I still wake up at night. But not quite up to the same sensation. Not to that fairly severe pain and some rigidity in the legs which even makes popping noises when I straighten them. Also, more importantly, before I fall asleep I do not have the typical ant-like sensation in my legs, it is camouflaged.

What this boils down is this: as long as I was (and am) taking hydrocodone (and at that time celebrex) for what the doctor and I thought was sciatica, or a twisted knee, it may have been RLS. Especially since whenever I stopped the medication (hydrocodone), I started having the typical RLS characteristic restless sensation in the legs. In the past I contributed these sensations to withdrawal symptoms from hydrocodone. Now I am not so sure.

So my conclusions so far I am going to take to the doctor in ten days:

1. hydrocodone is effective at getting rid of the "restless" sensations prior falling to sleep, It also helps with the discomfort. This however, happens at higher dose than (5 mg hydrocodone/500 mg acetaminophen).

2. In the past if I took an anticonvulsant with or without hydrocodone (topamax) it helped more including the stiff sensation in the legs.

3. I would want to try dopamine agonist at low doses, if for no other reason, for diagnostic purposes. It is possible that I have RLS concurrently with something else (but not rheumatoid arthritis, we ruled that out earlier).

My doctor is conservative, one thing at the time type of a guy. This is good, but it takes time. He is also not familiar with dopamine agonists but I suspect he will have read upon them by the next visit.

Let us know the events of your saga, otherwise it is like an interrupted reading of a true story novel . Seriously, that is the way we can offer support and learn.

Wishing you all some good times in the arms of Morpheus, I still remain

JumpyOwl

[Monica]

I posted my message somewhere else, but nobody replied. I was diagnosed with magesium deficiency by my doctor, and since taking magnesium completely abolished my symptoms, I was happy with the treatment and diagnosis. Then I stumbled upon rls webside, my symptoms matched exactly! I wonder if anyone tried taking magnesium and if it helps other people.

[jumpyowl]

Hello, Monica:

I am a newbie as an acknowledged RLS sufferer. Earlier this Spring however, I was experimenting with various antihypertensive medications. My doctor suggested that I get off beta blockers and start again on diuretics. Since I had problems with potassium deficiency before taking "water pills", he prescribed a new-fangled diuretic ( a combination of two medications) that is supposed to retain potassium.

It did not work out. First I had urine retention for 24 hours, then clearly I had an electrolyte imbalance. In a few days I started to have severe charlie horses in addition to cardiac arrythmia and palpitations.

I had that before but at this time I did not know whether with this new pill I had too much potassium and magnesium or too little. I could not tell without a blood test. In any case I stopped taking this combo and any other type of hypertensive medication.

This may have triggered my RLS although I think I had similar symptoms prior to this. The flare-up may have occurred because I stopped taking all other medications also such as Hydrocodone and Lorazepam both of which have ameliorating effect on RLS.

Last night was bad possibly because I overdid digging in the garden. I even had some lower leg cramps. So this morning again I took 400 mg of magnesium (in an oxide form), which seemed to help especially with the cramps. With the antsy feeling I am not so sure whether magnesium by itself would be enough.

You and I probably have idiopathic RLS that in your case could be secondary to magnesium deficiency. How is your ferritin level? That type of iron deficiency is well recognized as a cause in certain cases of RLS.

Did you have sleep deficiency, too?

JumpyOwl

[Monica]

Hi,
Before I was diagnosed with magnesium deficiency, the doctor thought that I had potassium deficiency, so he gave me some potassium pills. It was horrible, I had awful fluid retention. My symptoms got worse, it was clearly not working. As far as iron deficiency, my blood counts were always above upper limits, so I did not test for deficiency. I take a lot of magnesium - but not oxide which causes diarrhea, also is not very well absorbed. I tried different forms, and the best for me is magesium gluconate. I take 3-4 pills before bedtime (550mg each, containg 30mg elemental magnesium, daily allowance is 400mg). I do not have symptoms anymore (unless I miss several doses), the dosage does not increase. I used to stay awake untill 2-3 am, struggling with jumping legs. Later my whole body would jerk. When I was in hospital and given I.V. my whole body would jerk violently until I was given in I.V. magnesium sulfate. Within minutes the symptoms subsided.

[jumpyowl]

Thanks Monica for your informative reply! I am sure you are right. MgO is not that far in behavior from burnt lime (CaO) which is a caustic agent. And diarrhea is in the ball park, too. Magnesium gluconate sounds like a good idea and I will rather switch than fight.

I am a bit surprised that your doctor prescribed potassium for you without a blood test? Too much potassium is just as bad as too little. [It is an extreme example but induced hypercalemia is the modern humanistic way of execution used by many states (intravenous potassium salt solution)]

This is why I was in a quandary when on that double-whammy antihypertensive medication. I could not guess which medication was getting the upper hand, whether I was hyper- or hypo-calemic.

I will request a blood test on my next visit.

You probably consider yourself lucky as it appears likely that your RLS symptoms were the result of magnesium deficency.

[jumpyowl]

Well, I also got to the point of taking it one day at a time. I will see my doctor on the 14th day (I want to see you 2 weeks, he said). It is none to soon.

The prescription he gave me: 5 mg/500 mg hydrocodone once a day is vastly inadequate as the symptoms are not sufficiently controlled. The chief effect is that the discomfort is dulled somewhat but the weird sensation in the legs often cry out for at least a second pill.

Even that (second pill) is not as effective as a low dose anticonvulsant such as neurontin. I do not have access to that but I tried Topamax 25 mg and that definitely helps. (Topamax is not even mentioned in the exhaustive California list of drugs used in RLS treatment.)

So that is where I am waiting for Friday to come around.

[miamoss]

I am 32 years old and suffered from RLS all of my life. This disorder is so bad that suicide has crossed my mind many, many times. But one day I started taking a drug for another condition and I noticed that my RLS completely went away. The drug is called Neurontin, it is used for many things, but mainly epilepsy (which i do not have). For me, Neurontin has NO SIDE EFFECTS WHATSOEVER, it is great. What a relief. I just take 3 around dinner time (before the onsite of the RLS) and then I sleep fine, and I can watch tV now and go to the movies and fly on airplanes. Wow, I am so happy that "by chance" I found permanent relief from RLS. Now, I am no doctor, but my doctor was happy that we discovered this and supports it all the way. Please talk to your doctors and try it, I promise it works. Some may need to take more Neurontin or less, I take 300ml a day. Most important though, you should not wait until the RLS is starting to kick in before taking Neurontin, take it before the onset, if you wait too long, it will take twice as long to work. So I just take it early, before dark, that way I am covered, and I never even feel the RLS anymore, ever.
I hope this helps. Now I can live.
Maria Moss

[jumpyowl]

Hello, Miamoss:

I truly appreciate your message. In two days I will see my gate keeper and will discuss with him the pros and cons of anticonvulsants especially as one type (topiramate) also sems to work for me, with your note as a significant support!

There is a California web site (Nadia keeps suggesting as an information source) that discusses medications for RLS thoroughly including anticonvulsants (several of them). I was curious to find out why they did not mention Topamax (topiramate) so I e-mailed them. Within four hours I received an answer which I want to share. Here is the correspondence below:

From JumpyOwl
To: somno@earthlink.net
Sent: Monday, April 12, 2004 3:05 PM
Subject: Anticonvulsant

I recently discovered that I suffer from RLS. I am a M/69. My doctor prescribed Hyrocodone (5/500 mg) at bed time initially, which helps some but not enough.

I understand that Neurontine, an anticonvulsant, is quite popular in treating the symptoms of RLS. I am somewhat surprised that Topamax (topiramate) is not mentioned here among the anticonvulsants. I heard some anecdotal stories where one 25 mg tablet a night of Topamax helped a RLS patient considerably.

I would appreciate your comment.

BTW I find your website quite informative on this little known affliction.

JumpyOwl

Reply:

Most of the newer anticonvulsant medications have had some anecdotal success with RLS. Neurontin is the oldest (of the newer ones) and has been used and studied the most extensively which is why it gets most of the press in RLS publications.

Most RLS specialists will use the anticonvulsant of their choice or switch around until they find the one that works most effectively for any individual patient with the least amount of side effects (commonly, daytime sleepiness with most of them).

Requip or Mirapex are currently the most effective RLS medications and are generally used before narcotics or anticonvulsant medications by most (by not all) RLS specialists.

mjb

It seems that you lucked out by having to take Neurontin for another condition (would you want to reveal what condition in a private post perhaps?). My daughter takes Topomax for fibromyalgia.

I am glad you found the magic wand (pill) for your affliction. May everyone be that lucky!

JumpyOwl

[/quote]

[miamoss]

I would be happy to say why I take Neurontin and which is how "by chance" I discovered it cures my RLS.
I was diagnosed with "Bipolar II". A disorder which makes me sleep/depressed for days, then I'm up and happy and hyper for days. Basically severe ups and severe downs. But I no longer believe I have bipolar, think it was a misdiagnosis. So I do not take any medications except for the Neurontin for my RLS. My doctor give me the Neurontin just for my RLS.

[miamoss]

Can you list that web address where they sent you that reply regarding RLS and anti-convulsants?
Maria
Thanks

[jumpyowl]

Thanks for the prompt reply Miamoss!

I am giving you two links. One is for the anticonvulsive:

http://www.rlshelp.org/rlsrx.htm#Anti-seizure

and the other is a letter very well written by an RLS sufferer (both on the same web site):

http://www.rlshelp.org/tunlet.htm#legacy

I hope you find them interesting and informative.

[jumpyowl]

To my family doctor that is.

Right off the bat I told him that Hydrocodon helps some but not enough. Especially at the low dose he prescribed it for me. He looke pensive.
I showed him some stuff I dug up and made relevant to my situation.

When I looked into his eyes I observed that his eyes were cloudy and watery, and he appeared to be a bit stuffed up. Since I was only 20 inches from him I asked, flu or allergy? He confirmed allergy, so I did not draw away from him to a safe distance.

I mentioned that I have some pain in addition to paresthesias and while hydrocodone dulls the pain it does not help with paresthesias. I also mentioned that gabapentin (neurontin) is suggested by W.A. Hening in a publication (Hosp. Med. 1977; 33:54-56, 61-66.) for RLA when associated with pain. I also parenthetically mentioned that I got hold off some Topomax (also an anticonvulsant) and that seem to help. "You have taken Topomax? - he asked startled but then let it go at that.

I told him if he does not feel comfortable handling this problem I already have somebody picked for the role. Well, he did not want to let yet go.

"I can send you to a sleep clinic, as a matter of fact, I send you the same one he would send you" - and rushed away. I had to run after him to ask for some propranolol - as Hydrocodone gives me palpitations.

So I am waiting for a call from the sleep lab. It will be interesting to have some of the stuff confirmed and see what else brain wave wise they can come up with.

You all sleep well, you hear?

[sardsy75]

Only 4 more sleeps until my Neuro appointment. It will be an interesting one for a few reasons:
1. He's been uncontactable since the beginning of Feb
2. Both my GP & I have moved him to the bottom of our "favourite person's lists
3. My legs are in full swing....from the hips down
4. I have a rather long list of questions & comments for him to ponder

I heard a few rather disturbing audible "cracks" from my hips as I was doing some rather creative "walking/stretching" up and down the hallway tonight. Completely and utterly exhausted at the moment, and yet I have not achieved much in the way of "normal" physical activites this past week. Washing, folding clothes, preparing meals, washing my hair, even feeding our cats....they're all the jobs i've not had enough energy to even tackle this week.

I received some interesting advice today however....the more the merrier.....doctors/neuro's that is. This was from my mum's best friend, who does not have much longer to live.

I figured she is right. You can't get too much help these days. So, my appointment book is "filling up":
24.04.04 - Current Neuro
21.05.04 - Consult with new Neuro (apparantly in his early 30's with a "fresh" outlook on things - could be interesting!)
20.09.04 - Consult with top QLD Neuro

I've been busy doing up a history of my RLS in a spreadsheet. Day by day information such as:
RLS Symptoms Scale 0(none) - 5(real bad)
Other Symptoms & Side Effects Notes (i.e. sleep or no sleep; if sleep, on bed or relegated to couch; recurring cough; etc)
Medical Appointments & Notes (i.e. x-rays, blood tests, etc)
Drugs Used
Dosages Taken
Time dosages taken each day
So far, it makes for 7 pages of rather interesting reading!! (I don't think it will be a bestseller though

I'm hoping that having that history there on paper (the drug part in particular) might give someone a good idea about where to turn next, particularly now that my cough has returned....again. I don't want to think about longterm-use effects of cabaser - it's scary!

Onto some good news: I'm ready (as i'll ever be) and raring(!) to go with doing bookkeeping from home. It's not quite as exciting as being the financial accountant for four separate university campuses, but I have to start somewhere. I'm off to see my first client on Wednesday afternoon and will go on from there. I have another three interested clients who'd like to use my services on a periodic basis. I was offered a permanet part-time job starting in July for 25hrs/wk. Initially I though "great", but the more I though about it the more it didn't seem right. I cannot justify putting myself into an employment situation where I might have to turn around in six months time again and say "sorry, those dang legs, gotta go" and then leave them in the lurch.

It's only been two months since I had to quit my job. Getting away from the stress was a huge plus, but hasn't solved the problem. If I can keep my brain busy crunching numbers again, without the stress of office politics it will be a big bonus. It will also be nice to be contributing to the household income once again. It will also mean that a few projects can go back onto the agenda....like the bathroom reno, and another big o'seas trip.

Anyway, 'tis now 12.06am and my eyes are literally hangin out for some shut-eye. Still a little to waggly to join hubby in bed - probably get thrown out if i did , so it looks like it's the couch tonight.

Sleep well all

Nadia
28/Q/Aust

[jumpyowl]

Azalea sleep center in Tyler, Texas. Well, they let me out at 5:30 am. this morning. It was still dark. I had a nice chat with Jan, the technician, who is well read and has a lot of enthusiasm and pride in what he is doing.

It took him almost 30 minutes to place and glue all the electrodes to my skull, torso and legs. I had my pijamas on. He asked me not to take any medications and I promised him that I will stick it out as long as I can and will let him know when I can't do it I had a couple of hydrocodone and a Topamax hidden in the upper pocket of the pijama. just in case.

I immediately turned off the TV and actually dosed off before he came in to connect me. He asked me to go to the toilette one last time. Then heturned of the light.

I slept fairly well under the circumstances. I tossed and turned a bit and once even landed on the distributor box. He then came in and fixed it, we then exchanged a few words.

I woke up a bit after five and he came in (they can tell from the brain waves when you wake up.) . Even though a couple of wires lost contact, there were plenty others that took up the slack so the test was a success.

He showed me the wiggly lines and told me the good news: I do not hve sleep apnea. The bad news: I snore at a sound level #5 on a scale of 0-10. At this point he was glad to learn that my wife was not sleeping with me. The snoring also brought me close to awakening but I was not conscious of it.

He found plenty of incidence of nocturnal myclonus and the accompanying interruption of deep sleep. Interestingly he distinguished between that and RLS. He stated that the later occurs during waking hours. The last night I experienced very little paresthesias and only some quite tolerable leg pain.

The other good news was that the oxygen saturation of hemoglobin was always in the nineties (no sleep apnea - no anoxia of brain, heart etc.) Since my heart was monitored I asked him about my pulse which was normal exept the beats occassionally doubled up. (I will post on this later, when I find out what is going on as recently I had some cardiac episodes -prolonged tachycardia).

The way he explained it that the head of the sleep lab, Dr. Johnson (a pulmonologist) would treat my RLS via my family physician. Well, we shall see how that will work out.

It is only 8 a.m (Tyler is fifty miles from here), but I think I will try to get some shut eye.

Nighty-night!