Self-diagnosed

[Sole]

I remember reading about the interaction of dopamine agonist and opioid. To refresh everyone's memory: In one experiment, the patient was given earlier an opioid antagonist, then later was treated with a dopamine agonist. As expected, the opioid antagonist did not block the efficacy of the dopaminergic treatment. However, the preadministration of a dopamine antagonist did block the beneficial effect of the narcotic drug (opioid).

This is strange and I feel we should take this into account when using the two types of drugs together as I am doing (MX and HC). However, I do not know enough about the mechanism of action of these receptor sites. I would welcome any suggestion, while I am studying this aspect of the RLS scene.

Jumpy,

This is good information for me as Ms. B prescribed me Hydrocodone yesterday. They are 5mg/500mg tablets. She prescribed 2 eevry four to six hours as needed. So I took two tablets last night and they made me VERY ill. Spent time throwing up about 30 minutes after taking them. They also made it very difficult to sleep. Do you or did you have trouble getting to sleep while taking it? It made me very drowsy (drug drowsy) but still was very hard to get to sleep and woke up from vivid dreams all night. I don't think it's a good drug for me. I hope the Ultram works better. I did take the Mirapex first, last night, so maybe that has something to do with it. I plan to take the H first tonight..only one tablet and .5mgs Mirapex second. How long do you wait between taking the two?

[jumpyowl]

For now I am taking them together. The important thing is that one has to take them before the symptoms start.

[jumpyowl]

Still plugging along with Mirapex and Hydrocodone. Try to keep them 0.25 mg MX and 10mg/325 mg level twice a day.

The night before the last I went to bed early (9:00 - 9:30 pm). Right after and After going through stages 1,2,3,4,5 and reversing 4,3, 2 and just starting on REM (around 11:15 pm - ...
.... - I had the clearest sensation that a large carton box fell on my head while lying in bed. I woke up suddenly and searched for possible debris and the box itself around my pillow for 30-40 seconds until I was finally convinced that it was a clear case of hallucination. My head was clear and I had no vertigo at all.

I almost never have hallucination, if that is what it was.

I blame it on the Miraflex and decided to take only 0.25 mg even prior going to bed for the night.

I wonder what experiences I would have if I added 300 mg Neurontine.

[Sole]

Perhaps just a very vivid dream. I've been dealing with vivid dream and nightmares for years and they can definitely wake me with feelings of being disoriented. Sometimes it takes me a couple of minutes to remember what's real and what was part of the dream.

[jumpyowl]

Sole wrote:

...I took two hydrocodone tablets last night and they made me VERY ill. Spent time throwing up about 30 minutes after taking them. They also made it very difficult to sleep. Do you or did you have trouble getting to sleep while taking it? It made me very drowsy (drug drowsy) but still was very hard to get to sleep and woke up from vivid dreams all night. I don't think it's a good drug for me. I hope the Ultram works better. I did take the Mirapex first, last night, so maybe that has something to do with it. I plan to take the H first tonight..only one tablet and .5mgs Mirapex second. How long do you wait between taking the two?

Opioids do cause nausea in many people. Morphine sulfate is worse. They also cause palpitations. Here one has to be careful abouit taking beta blockers to slow down heart beat when on medication resulting in orthostatic hypotension. The trouble is that antiemetics obtainable in this country cause other side effects.

A thirty minute time lag is probably advisable before taking the dopamine agonist. This phenomenon together with the exact mechanism incolving dopa receptors D1-D3 is still under consideration.

[jumpyowl]

but they go fast, do they not?

I have not reported on my doctor's visit lately. The reason is that I have not had one. I made a mistake in the dates. I will see him, two adjacent appointments (one with my daughter), on Aug. 11.

In the mean time I am trying to control my symptoms the best I can, I am on:

Mirapex 0.25 mg tablet twice a day.

Hydrocodone (10 mg/325 mg) one tablet twice a day. Occasionally a third if needed.

Now if I get some problems with cardiac arrythmia, I have to do something else. There seem to be the following events:

1/ palpitations (tachycardia) may be caused by a combination of stress and possibly hydrocodone. Range: 120-135 pulse rate (1/min). This could be associated with both normal or high blood pressure.

2/ bradychardia, low heart beat rate around 60 1/min. This could be associated with both normal or low blood pressure. If also hypotension, then I usually feel fatigued as well.

Tachycardia is often resistant to propranolol (10 mg) a beta blocker. However, it usually responds to a tranquilizer such as lorazepam (1 mg).

3/ orthostatic hypertension, this is the strangest one of them all. It does not even supposed to exist! Typical data taken this morning:

____________________________________________________________

Time: _________systolic/diastolic/pulse:________body position:

upon awakening......105/62/64.............................................supine

30" later..................147/94/92............................................standing

90' later...................148/86/72............................................sitting

_____________________________________________________________

Strange, huh?

[jumpyowl]

Well I found something on Orthostatic Hypertension but not much:

J Am Coll Cardiol 2002 Jul 3;40(1):133-41 (ISSN: 0735-1097)
Kario K; Eguchi K; Hoshide S; Hoshide Y; Umeda Y; Mitsuhashi T; Shimada K
Department of Cardiology, Jichi Medical School, Kawachi, Tochigi, Japan. kkario@jichi.ac.jp.

OBJECTIVES: The study investigated the clinical significance and mechanism of orthostatic blood pressure (BP) dysregulation in elderly hypertensive patients. BACKGROUND: Although orthostatic hypotension (OHYPO), often found in elderly hypertensive patients, has been recognized as a risk factor for syncope and cardiovascular disease, both the clinical significance and the mechanism of orthostatic hypertension (OHT) remain unclear. METHODS: We performed a head-up tilting test and brain magnetic resonance imaging (MRI) in 241 elderly subjects with sustained hypertension as indicated by ambulatory BP monitoring. We classified the patients into an OHT group with orthostatic increase of systolic blood pressure (SBP) of >or=20 mm Hg (n = 26), an OHYPO group with orthostatic SBP decrease of >or=20 mm Hg (n = 23), and a normal group with neither of these two patterns (n = 192). RESULTS: Silent cerebral infarcts were more common in the OHT (3.4/person, p < 0.0001) and OHYPO groups (2.7/person, p = 0.04) than in the normal group (1.4/person). Morning SBP was higher in the OHT group than in the normal group (159 vs. 149 mm Hg, p = 0.007), while there were no significant differences of these ambulatory BPs between the two groups during other periods. The OHT (21 mm Hg, p < 0.0001) and OHYPO (20 mm Hg, p = 0.01) groups had higher BP variability (standard deviation of awake SBP) than the normal group (17 mm Hg). The associations between orthostatic BP change and silent cerebrovascular disease remained significant after controlling for confounders, including ambulatory BP. The orthostatic BP increase was selectively abolished by alpha-adrenergic blocking, indicating that alpha-adrenergic activity is the predominant pathophysiologic mechanism of OHT. CONCLUSIONS: Silent cerebrovascular disease is advanced in elderly hypertensives having OHT. Elderly hypertensives with OHT or OHYPO may have an elevated risk of developing hypertensive cerebrovascular disease.

Again I took vital sign measurement, same as yesterday:

Time: _________systolic/diastolic/pulse:________body position:

upon awakening......110/62/72.............................................supine

30" later..................131/92/87............................................standing

90' later...................139/85/74............................................sitting

_____________________________________________________________

I also had severe tachycardia (PR=137 1/min) the previous night controlled with klonopin 0.5 mg.

As it says above: "Elderly hypertensives with OHT or OHYPO may have an elevated risk of developing hypertensive cerebrovascular disease."

The only problem is that I am not a hypertensive. So let us hope for the best. Apparently alpha adrenergic agents (blockers) are used in such cases. I know beta blockers do not work.

[jumpyowl]

Still getting along on Mirapex 0.25 mg twice a day (total 0.5 mg per day plus one Hydrocodone 10/325) also twice a day.

I keep track of my arryhmia because it could be drug-induced. Although I suspect it is stress-related.

Yesterday afternoon, after MX and HC I napped a couple of hours (I had been up since 5:00 am). I awoke to severe arrythmia but I was on my left side (unusual) and in a weird position that compressed the chest cavity.

I moved into a better position and measured my blood pressure. It was normal and the pulse rate for 75 1/min. Buit still felt arrythima. So I relaxed 30 more minutes and again measured my vital signs: BP a bit below normal but the pulse went down to 61 1/min.

I arose and again measured the blood pressure and pulse. The pulse increased to 85 and the BP is also increased to high normal. But I did not have the typical hypertension. as the BP did not increase much.

At night I took MX, HC and KL (klonopin 0.5 mg). Slept until four in the morning, when I got up. Actually I woke up after the first couple of hours (around 11:00p.m.) so I ate something (due to missed supper).

Day after tomorrow I am going to see my new doctor. So I am busy preparing my saga. I am trying to reduce these nine long pages to something less than a page.

If anyone interested I will post the brief version of this thread as far as my saga is concerned.

[sardsy75]

Still getting along on Mirapex 0.25 mg twice a day (total 0.5 mg per day plus one Hydrocodone 10/325) also twice a day.

I keep track of my arryhmia because it could be drug-induced. Although I suspect it is stress-related.

Yesterday afternoon, after MX and HC I napped a couple of hours (I had been up since 5:00 am). I awoke to severe arrythmia but I was on my left side (unusual) and in a weird position that compressed the chest cavity.

I moved into a better position and measured my blood pressure. It was normal and the pulse rate for 75 1/min. Buit still felt arrythima. So I relaxed 30 more minutes and again measured my vital signs: BP a bit below normal but the pulse went down to 61 1/min.

I arose and again measured the blood pressure and pulse. The pulse increased to 85 and the BP is also increased to high normal. But I did not have the typical hypertension. as the BP did not increase much.

Hey Jumpy

I have been following your progress and your recent comments about arrythmia have pricked my ears as I know that I have read about arrythmia and a possible relation to RLS OR CFS/ME I can't remember which one

The only problem is locating where I read it. Due to my memory being slightly "pickled" as a result of the numerous drug experiments over the past months, I am having to do a lot of re-reading to find out where I read it

Patience is a virtue though, and I will find it!!!

Have been doing a bit of ferreting in my favourite Aussie Medical Site, which you might find interesting: http://mydr.com.au

You are also right about stress affecting your blood pressure:
http://www.mydr.com.au/default.asp?Article=3799

Also found an interesting snippet relating to hypertension:
http://www.mydr.com.au/default.asp?article=3174

Now, this one will get you goin! The Benefits For Your Heart of a Good Sleep (well, duh!):
http://www.mydr.com.au/default.asp?article=3875

BTW, while I think of it (have a habit of thinking of odd things at odd times these days!) have you been to Jodi Judson's RLS page? On it is a now "dead" link to an article written by one Dr Frank Elaty M.D. A few months ago I joined a small RLS Support Group on Yahoo Groups and as a part of the "welcome package" received a copy, in full of this particular article. I'm wondering if you have seen the article, and if not, if you'd like a copy to peruse. It makes for interesting reading.

Anyway, i'll stop rambling and let you get back to doing something else

Take care of you!

[jumpyowl]

Sorry not to have answered your helpful and caring post. I still have not researched your references because I am working on something else with a deadline. But I will. Yes, I would love to have the reference on the dead link. I would like to keep on top of this arrythmia business. Most of the time it is harmless but sometimes it can be serious.

I am way behind on my own saga. On August 11, I went to see my daughter's pain doctor.

I think I overwhelmed him with information. So I gave the stuff I typed up to his male nurse, Roger, who fortunately craves solid info.

I summarized saying that I found two important things through my research and from info flowing to us on this discussion board from all of you. These were:

1. be aware of the exacerbating effect of antidepressants

2. Realize that drugs against paresthesia are insufficient in case of real pain associated with the affliction.

Of course, he had to degend the antidepressants saying it helps in 30% of the cases (of pain and insomnia). Then I made it clear that I am only referring to cases of RLS or RLS/PLMD.

Then he asked me what I wanted. I said I'd like to try Ultram as I am possibly having side effects from hydrocodone. His mien became relaxed and said, "of course I can do that."

Then he checked my reflexes and some of them were not quite responsive (my leg muscles were tense). Then he asked me to bend over and reach the floor. I said what? I have not been able to do that in the past 20 years! He looked unbelieving then I reminded him I was almost 70. He looked surpised (it is in my chart) but did not say that it was a weak excuse. Which it was! (I thought of Nadia's intense stretching exercises and felt ashamed ).

The he said that he would feel better if I would see a neurologist. I said OK! So I will see one, I am not sure when. I doubt if she will find anything but I assume they will make some nerve conduction studies.

Now about the Ultram. The dose is 50 mg twice a day. So I started by skipping hydrocodone completely and use 0.5 mg Mirapex.

The result was a severe attack of paresthesia at around 11 o'clock at night. I ended up taking one hydrocodone and a klonopin also, so I could sleep.

Then I remembered that the first time I realized I had paresthesia when I stopped hydrocodone (after a tooth extraction) as well as Ativan. At that time I contributed it to withdrawal effects from hydrocodone.

I learned from this event and started weaning away from Hydrocodone gradually (taking now 1/2 tablet of (10/325)). Plus Ultram and Mirapex. I think I will need to increase Mirapex (from 2x0.25 to 2x0.5mg) to get completely off Hydrocodone.

I wll let you know how long it will have taken to completely get off hydrocodone.

Also the results of the visit to the neurologist.

[jumpyowl]

I started to write about this in another topic (Mirapex) but then realized it should also be here.

Since I want to exchange Hydrocodone to Ultram to find out whether the paresthesia I have is a withdrawal syndrome of the codein derivative in Hydrocodone, I started on Ultram 50 mg twice a day together with Mirapex at 0. 25 mg twice a day. I discontinued hydrocodone abruptly.

The result was a huge flare up of paresthesia as I mentioned in the previous post. I had to resume taking hydrocodone again, albeit I started to decrease the dosage ot half of 10 mg/325 mg twice a day and I upped Mirapax to 0.5 mg twice a day.

I fall asleep in the evening readily but wake up after 4-5 hours of sleep. If I get up, I need sleep in the afternoon. I just did that. Yesterday, I woke up and got up at 3:30 AM. Took Mirapax and Ultram and went to work, which was actually a mistake. I went to bed again at 11 am after taking an exotic sleeping draught that ensures stage 4 and 5 sleep. At 3 pm I woke up with a severe paresthesia. You see it was eleven hours after I took my first dose of MX and UL which were taken too early.

I took again Mirapax (0.5 mg) and Ultram (50 mg) but by mistake also took 0.5 mg Klonopin. I am keeping with me a Hydrocodone pill but will not take it until the evening if I can manage. And it will only be half a pill. If I keep busy I might make it.

Well I did make it without hydrocodone.

Later on in the afternoon I had a severe unrelated pain which finally responded to an opiate pain killer (not Hydrocodone) and a muscle relaxant (I have spastic smooth muscles ).

In the evening I took a third dose of Mirapex (0.5 mg), an Ultram (50 mg) and nothing else. This enabled me to sleep until 3:00 AM when I got up. This time I did not take any medication that early, will wait until later this morning. I only have a shadow of the usual leg discomfort at present.

Clearly I have to increase my dosage of Mirapax to 0.5 mg twice a day. I will try to keep Ultram at the same level although it appears to be less effective than hydrocodone (or is it the fact that the HC is more addictive?).

[jumpyowl]

To remind the reader, I was prescribed Ultram on the 11th of August. I started to take one 50 mg pill before noon and one in the evening on the 12th instead of relying on hydrocodone. The result was intense paresthesia at night. So on the 16th I started to take one half of Hydrocodone (10mg/325mg) twice a day. I did the same on the 17th. From the 18th I have not taken hydrocodone.

I now regularly double my dose of Mirapex. Instead of taking -.5 mg once a day now I do take it twice a day about 6-8 hours apart. Have not experienced any more paresthesia.

Yesterday I had a long and stressful day. Even went to bed late. Before retiring I took 0.5 mg of Mirazepam and 50 mg of Ultram. Since the stress I also took 0.5 mg of Klonopin. Slept about 6 hours. Upon awakening I did take my vital signs while lying in bed, sitting up, and then standing with rather curious and slightly concerning results:

POSITION:....................sytolic/diastolic//pulse
..................................(torr/torr//beat/min)

supine..........................135/83/81

sitting...........................168/108/78

standing........................181/110/89

I may have to mention this to my family physician. The pain doctor just shook his head.

On the quality of sleep:

There is no question that we not only need sleep but also slow wave sleep (stages of 4 and 5). I was fortunate enough to try a medication like Xyrem and found myself feeling much better rested after only six hours of sleep.

BTW Xyrem is so short-acting that one has to take it twice a night to sleep long enough for a full night rest.

I introduced my present pain doctor to Xyrem several months ago. I even suggested that he prescribe it to his genetically impaired child. I believe such a sleep aid would also work well for RLS patients.

It is already available for patients having narcolepsy especially if it is associated with cataplexy. Research shows that Xyrem is also effective for fibromylagia patients due to its effect of decreasing alpha wave intrusion into delta sleep. Interestingly it does not do this in Chronic Fatigue patients!


I am carefully working toward trying to make Xyrem available for RLS patients (I am convinced that I could benefit from it ). I will get in touch with a sleep expert in OHIO, the head of Tistate sleep laboratory, who has worked with Xyrem since the eighties (having to stop in the nineties due to Federal ban but starting again in 1998). I am also in touch with the Central Pharmacy of Orphan which dispenses the drug and with the company which makes it after having had classified it as an orphan drug by the FDA.

Probably plenty for one post.

All of you may have a restful night! and God bless!

[jumpyowl]

Last night I slept from 8 -12, after taking 50 mg Ultram, 0.5 mg Mirapex, and an additional pain killer. After I woke up I felt fdine so I thought I work on the questionnaire. Worked until 4:00 am, when I went back to bed with a sleeping draught. Slept until 9:00 am.

Then I did my usual vital sign experiment. Here are the result:

POSITION:...............sytolic/diastolic//pulse
...............................(torr/torr//beat/min)

supine..........................124/74/78

sitting...........................158/103/83

standing........................166/103/99

Around noon I reversed the experiment:

POSITION:................sytolic/diastolic//pulse
................................(torr/torr//beat/min)

standing.........................154/89/97

sitting.............................165/97/88

standing..........................124/69/80

These three measurmets were taken within 1 minute from each other.

Curious, aren't they?

[jumpyowl]

If you all recall I went to see my daughter's pain doctor on the 11th of August. He prescribed Ultram for me. Actually he looked relieved that this is all I wanted.

However, he wanted to contribute something so he checked my reflexes. He said that I was missing some reflexes. He made me walk on tippy-toe which I managed. I could even touch the ground if I placed my feet apart.

Still he decided that I should see a neurologist. I agreed because diagnostic tests are fine with me. It is usually the treatment where we disagree.

Yesterday I received a huge packet from a lady neurologist, Dr. Stasha G.

From the forms I had to fill out she appears to be a thorough person. I hope she is as knowledgable. I also saw from the questions that she is on the look-out for medication abuse, for injury pretenders, and lawyer involvement. She wants all the records from all doctors who prescribe for me.

My appointment is on October 13, none too soon.

Will let you know. I assume she will do a nerve conduction study and possibly some MRI's. I have never seen a neurologist but there is always a first time.

Take care, my friends!

[techie]

Honestly I am a true spouse and self-diagnosed RLS victim. Maybe someone can tell me for sure (but based on what I have read) based on the symptoms and lifestyle, should I even be here.

I have totally uncontrollable jerking of my legs and an occasional "fling" of my arms (I drop or throw things on occasion without knowing why). I think I sleep ok, but on the other hand I feel tired even after what I think is a full nights sleep. On the other hand, my wife gets very little sleep since on most nights my legs and arms jerk every 20 seconds or so (she lays awake timing it). When I am awake, I feel the tingling and burning sensation just prior and if I concentrate on stopping it, I actually end up in pain and with cramping. My wife is an RN and was the first to suggest this and we did mention it to my primary doctor (I see a D.O. primarily). Based on the symptoms, he too said that it "could" be RLS but that there was nothing that could be done unless it actually affected MY sleep patterns and not just hers...except for sleeping in seperate beds. I know this can't be the only solution.

Now maybe someone can tell me how to either reduce or eliminate this thing or at least the affects! Key issues for me are the following:

1) I am ADHD but control it without medication since I have been living with it since my earliest memory.
2) I take Xanax to control a severe case of Social Anxiety Disorder but only when needed (when faced with crowds etc.).
3) Yes I like to have an occasional beer...and my wife does say that this makes it worse...I wouldn't know, it seems that it is the same to me.
4) My work is extremely stressful and requires some periods where I work on less than 2 -3 hours of sleep a night for a week or more if lucky( I usually realise that I am sleep deprived at about the hallucination or speech slurred stage unfortunately). But when I finally get the oppurtunity I sleep for 10 - 15 hours or even more...and I "think" it is quality sleep.
5) My dietary habits stink...I have a weight problem REVERSE of what everyone else has and some wish for, I have to eat 4K + calores a day to maintain my weight and I forget to eat which means that I "crash" when my sugar level drops which appears to make it worse.
6) I think this has actually been a bad issue for only the last 4 - 5 years, but I remember it occasionally being there for all of my 38 years but didn't know what it was.

So I can't fix #1, #2 would mean that I would not have a social life, #3 I guess I could live without (we are talking about 2-3 beers in a month), #4 if I could do something different I would, but it is my career, #5 is my fault and I try to balance it and #6 is the outcome of one, all or maybe none of the above(?).

Either way during the day, it is embarrasing to have this happen in public and my wife is at her wits end.

My question is simply do I have something like RLS or am I ignorant and anyone would have symptoms like this given the lifestyle choices I have subjected myself to. And if I am a victim of this, is it realistic to assume that I could something really different to reduce it, do I just live with it or does it ever just go away? Can I control this with just a change in diet and if so what? Switched off the Xanax for a while and tried Zoloft but it didn't work for me as well as the Xanax. If I have to live with this...I don't know what I will do.

Based on what I read in this forum, I THINK I am at the right place...if someone tells me otherwise then I will just keep searching.

cheers