Self-diagnosed

[jumpyowl]

Now it has been a week on Mirapex. Still on 0.25 mg since that is what has been prescribed by the sleep doc.

Last night I probably took Mirapex and 1 hydrocodone and probably napped a little when woke up with another dulled paresthesia around midnight. After some tossing and turning I got up, ate a small snack (quietly), took an other hydrocodone (10 mg/325 mg), then I made myself carefully a weak Mickey Finn (yes, I am old enough to know about that and I can do it safely).

That took care of the paresthesia and possible insomnia but toward the morning I had some crazy dreams (not due to th M/F as it is short-acting. I also had some RLS pain in my right knee which actually woke me up. That is in line with my previous experience: pain medication creates ghost pain of the RLS type toward the end of its half-life.

Tomorrow I have to take my daughter to the nearest town, Tyler, to her pain doctor. (I should like to exchange my sleep doctor with her doctor because Mirapex low dose will not cut it and he does not prescribe pain medication. I am actually less concerned of pain killers (carefully managed) than augmenting anti-Parkinson or anticonvulsive medication - but that will take some skillful maneuvering).

I will take an opportunity to see what my blood test looks like by visiting my sleep doc's office (I have not been notified of the results as yet ) I may leave the doctor a note with the PA.

I have not taken Neurontin or Topomax for over a week (have a whole vial-full). And am glad to report that my vertigo is finally gone!

[Sole]

Jumpy,

So do you think the Mirapex is working for you? How long does it take for it to be at it's full effectiveness?

I've heard of "slipping him a mickey" but what exactly is that?

CAN you switch to your daughter's dr.? Would you?

sole

[jumpyowl]

By continuing my story, I hope to help others, e.g. Sole (Is it from O Sole Mio...? soul in Italian? )

Arrived in Tyler just before noon. Went to Azalea clinic. No chance to see the doctor, but I managed to ask so many technical questions from the nurse that she panicked and called Jan from upstairs. If you remember Jan is 1/4th Cherokee American Indian and a very bright guy, he is the sleep technician.

I inquired what the allowed access to the doctor. " Can I call him?" "Of course not, then everybody would just call him" (and he would not be making any money). " How about just getting a dosage increase on my Mirapex (I was getting paresthesia at night again)?" -"Oh, I can do that!" (Suddenly I remembered Sole's nurse practitioner, who can also prescribe even antidepressants - but probably not painkillers ) I can call the pharmacy for you!" "Good, you do that."

Then I asked for my blood test results. Of course they still were at the hospital. After several telephone calls a fax testing they arrived.

Here are the results:

HEMATOLOGY:

*** Complete blood count ***

HGB g/dl 13.0 L (Range 14.0 - 18.0 g/dL

the 13.0 g/L is probably a mistake, should be 13.0 g/dL

*** Profile chemistries ***

Potassium ion (range 3.5-5.3) 3.8 mmol/L

Calcium ion (range: 8.4 - 10.2 ) 8.5 mg/dL

Phosporous (range 2.5 - 4.5) 3.1 mg/dL

*** Misc. Chemistry ***

Magnesium ion (range 1.6 - 2.3) 2.2 mg/dL

My note: magnesium is on the high side and calcium is on the low side, so mmy calcium-magnesium ratio is really lower than normal.

*** RIA ***

Ferritin (range 28 - 464) 87 ng/mL

[The lower limit of the range is misleading because under 50 ng/ml, the ferritin is too low.]


I love these mixed up units. ng is nanogram (1/(1 billion) of a gram.

mL = milliliter, 1/1000th of a liter, dL is deciliter (1/10th of a liter = 100 ml)

Millimol is the weight of the substance in milligrams divided by the molecular weight (for potassium and sodium it is the same as milli-equivalent).

[But at least biochemists no longer use "milligram percent" which is a complete nonsense (per cent is a dimensionless number, it cannot be milligram; besides it really meant # of mg/100 milliliters which again is not a per cent). But as usual I digress...]

Then we had a big argument about painkiller. Jan told me that occasionally Dr. J. prescribes Ultram but he does not even "do" hydrocodone. He wants the family doctor prescribe painkillers because they can follow more closely the administration of the medication.

That did it. I realized that I do not need this lung doctor masquerading as an RLS specialist because of his sleep lab. I am going to swith to Dr. R. the pain specialist after checking whether I need the permission of my gatekeeper. - I thought to myself.

So then after lunch we went to see Dr. R. (actually Roger a male nurse of his who is really a neat guy and is willing to learn).

I told Roger that I want to switch rather than fight. Switching doctors that is... It turned out to be no problem. I told them I can get my records from my family doctor without telling him I am going to switch doctors. (Dr. J. was his favorite).

I printed out the whole NIH workshop report (of which Sole only received one page) and showed it to Roger. He started to "drool" so I told him he can have it (I meant to give it to him all along.)

BTW. Sole; let me quote another paragraph from that report for you to use as ammunition:

Drug-induced RLS

There is some evidence from published case reports that RLS symptoms may be worsened or unmasked by medications such as tricyclic antidepressants , selective serotonic reuptake inhiitors, lithium, and dopamine antagonists. (this last one is really a no brainer! )

Sole, you should have gotten my letter today. You could take the attachment and type this quote on the back side of it or below the table.

[Sole]

I'm glad you're able to switch. It will be interesting to see how the new Doc handles you. The NIH report. Can you post a link to it? Is it that 18 page one? Umm....the quote. It didn't show up.

sole

[jumpyowl]

I post half-finished posts because I do not want to lose it while I am searching for the quote for example.

Here is the link:

http://www.rls.org/literature/detection.html

The very first one. Starts with NIH.

Did the mail come in yet? Did you make an appointment with Ms. B.?

What does your handle stand for? Just curious!

The new doctor is no mystery. I have been taking my daughter to see him for years. He is also the head of the methadone clinic in Tyler. He was a resident at the same Medical School while I was on the faculty. I do not think we will have any problems.

[Sole]

Yes it did come. Thank you so much! I called Ms. B.'s office to make an appt. They said the soonest I could get in was end of next week. I told them my situation and that, whenever a new medication is prescribed, the doc tells you to call if you have any adverse effects. I yelled, "I'm having adverse effects!!!!" She put me through to the nurse. I gave her the information and she said she would talk with Ms. B. and return my call shortly. It's been an hour. I'll kepp you updated.

The nickname means absolutely nothing.

sole

[Sole]

Yes it did come. Thank you so much! I called Ms. B.'s office to make an appt. They said the soonest I could get in was end of next week. I told them my situation and that, whenever a new medication is prescribed, the doc tells you to call if you have any adverse effects. I yelled, "I'm having adverse effects!!!!" She put me through to the nurse. I gave her the information and she said she would talk with Ms. B. and return my call shortly. It's been an hour. I'll kepp you updated.

The nickname means absolutely nothing.

sole

They never called me back today!!! All the warnings about call if these medicines have any adverse effects preaching is a bunch of bunk!

sole

[jumpyowl]

Sole, (another mystery solved ), I read your query in some other thread about what medications to try taking into account both the cost and efficacy. I will drive down to the county seat and will have a heart-to-heart talk with the pharmacist, who is very nice and helpful. Will get back to you hopefully on time.

[jumpyowl]

I went to see my favorite pharmacist, Debbie J. Interestingly, the insurance let the 0.5 mg tablets through within the same month (!) with just the co-pay. The co-pay is $35.00 so I suspected that Mirapex is an expensive (fairly new?) drug.

It is fairly expensive, for thirty 0.5 mg tablets they charge between 70-80 dollars. Hydrocodone is much cheaper and for me it works with or without Mirapex.

BTW Mirapex works fine so far. I asked to increase the dosage and they doubled it.

If I have to take it earlier, I will take the smaller dose, 0.25 mg, and then take another small dose at night. In other words I spread the increased dose over the day. I find it important to take at least 30 minutes before retiring,

So far, Mirapex works without bothersome side effects. Konock on wood! The only unusual thing is I now have is ORTHOSTATIC HYPERTENSION, but no more vertigo (!). That was scary !

OTHER: Mickey Finn can be thought of as the ancestor of date rape drugs. Except in the old times it was usually used by prostitutes and the key word instead of "raped", was "robbed. " It competes with alcohol for an enzyme that metabolizes alcohol.

It is a mixture of chloral hydrate and ethanol (alcohol). It is quick acting and the drug by itself is used for quick sedation of small children clinically. It also has a prolonged effect probably due to its first metabolite, trichloroethanol. It is fairly harmless but the "therapeutic window" is narrow and at higher doses it can be toxic. The discovery of barbiturates decreased its popularity.

[jumpyowl]

I tried both variations: 0.25 mg Mirapex twice a day. It works pretty well. Also 0.5 mg Mirapex before retiring only. It works similarly.

Yesterday I had a small accident. I cannot squat as I cut the circulation in my legs (perhaps the knees are too stiff) so I set down on a large 5 gallon pot full of dirt near the patio edge while collecting dog hair from the floor (Coco just got a haircut). At least I tried. The pot was made of plastic so it partially collapsed and I fell backwards off the porch. At this side I built neat step edges off the porch made out of cracked bricks. That is the edge I hit with my hips.

Did manage to bruise my hips and butt. Luckily nothing was broken or cracked. I went to bed after treating the cuts and bruises. I could not (did not want to) move very much in bed so I thought the paresthesia will rear its ugly head. I was wrong!

I took 0.5 mg of Mirapex and 2 hydrocodone tablets (@10 mg/325 mg). I slept well until 1 o'clock when I took a sleeping draught. Slept until 5 o'clock, when -not wanting to push my luck - I got up.

NO PARESTHESIA AT ALL during the night.

BTW I am not advocating lower bodily injury to stop paresthesia.

[becat]

Jumpyowl,
As a mom I normally kiss the boo boos, I think in this case I just offer a bug hug and say I'm so sorry.
Be careful, you. We need our head of research to be well. Put a pillow on the chair while you type. LOL
I'm so glad the Mirapex seems to help.
Have a great day healing.

[jumpyowl]

I am not sure what a bug hug is and am afraid to ask. But I love your sense of subtle "Panhandle" humor.

Actually I do not need to use a pillow because the injury is higher up where the hip bones can be felt. This is why I am glad no bone injury occurred.

I promise I will be as careful as I can. It is tough! I am telling ya!

[Sole]

Ah man, don't go gettin' hurt on us. Seriously though, I'm sorry you got all bruised up and sore. Maybe it's a good excuse to rest for a bit? As tehy say in the Army, "Drink more water." That's their cure all.

[RLSinGA]

I'm new to this..but I have been to doctor..he dismissed it as post tramatice stress syndrome...please I don't believe that..I read that some of you take meds..what do any of you recommend to start with

[jumpyowl]

I think we can help you but we need more information about you.

What are your symptoms, first of all? RLS is tingling unpleasant sensations usually in the legs when the limbs are not moved. This unpleasant sensation (called paresthesia) becomes bad enough that one HAS to move the legs!

The sensation stops (!) when the limb is being moved.

The sensation can be, but does not have to be, associated with pain.

When a patients with RLS is (finally) asleep then often there is a jerking motion in the leg muscles (Periodic Leg Movement Disorder). This can be measured and documented during a sleep study.

How well do you sleep? Important!

What medications if any you take now?

Four types of medications were found to be effective for RLS/PLMD:

1. Dopamine agonists such as Mirapex (anti-Parkinson medication, low doses)

2. Sedatives such as Klonopin

3. Opioids and other pain meds. e.g. Ultram, Hydrocodone.

4. Anticonvulsives (e.g neurontin)

What trauma is your doctor referring to?

I repeat, we need more info about your symptoms, present medication, and medical history to be able to provide useful information.