Miscellaneous Musings for the Very Bored

Hi, All. I was going to wait till after I got home from the hospital tomorrow to provide those interested with the results of my experience (thoracic ultrasound to assist in diagnosis of potential heart issue). However, circumstances conspired to create a "triple-header" of sorts.

I had asked the office of my soon-to-be new sleep expert neurologist to call me in advance of our first appointment if there was a cancellation by another person. They called early this morning to inform me that they could see me tomorrow morning. My initial reaction was to express wonderment as to why an office that was aware of the medical condition for which the appointment had been scheduled would call me so early in the morning. But I relented. So I have an appointment with my new sleep expert first thing tomorrow morning.

Fortunately, my strategy of seeking medical care from doctors all of whom were under the same roof paid off. In this case, my thoracic ultrasound already had been scheduled at the very same facility later in the day, so I could take care of both for the price of the same taxi fare (or parking garage fee, depending upon my mood). And since my referring general practice physician also was affiliated with the same facility, information sharing would be effortless.

The "triple-header" has to do with my RLS medicines rather than with my physicians. I now have successfully completed my months-long titration off tramadol. Consequently, after 20+ years of regular use, this past year, I successfully ceased taking three medicines that had been prescribed for me for RLS: tramadol; pramipexole; and Vicodin. With the exception of the newly re-prescribed pregabalin (150 mg each evening), I am not taking any other RLS medicines.

How do I feel? As others recently commented in their separate posts--sleepy, day-long and evenings too. Exceptional dry mouth too. Based upon the replies to those comments, I anticipate that the side effects may subside or disappear altogether in the coming weeks. My daytime RLS still persists; and my nighttime RLS still reaches its zenith ~1:00 AM - 3:00 AM. At this time, however, it is too early to say how much of my current discomfort is idiopathic due to discontinuance of tramadol rather than primary due to genes. But I'm no worse than a year ago.

[If SalemLake reads this: My General Practice physician prepared detailed notes and an after-visit summary following the last visit during which an E[C]KG had been performed. Being a chicken, I only looked at the summary. I am not sure if the person administering tomorrow's ultrasound will be able to tell me what they found or if I instead will need to wait till next week's appointment with my General Practice physician or perhaps later if a visit with a cardiologist is indicated. However, I am hoping that, if there is a need for surgery, the tests suggest Aortic Stenosis for which the "non-surgical" procedure that we discussed ("TAVR") may be an option rather than a defective Mitral valve for which TAVR may not appropriate. Fingers crossed.]

[Hidden]

No, the sonographer is not supposed to discuss. You might be able to see the screen when placed on your side. The calcium deposits will glow. There are three leaves (tricuspid) to the valve. If you commend the operator on what a good job he is doing you might get some Intel out of him.

I would think mitral valve stenosis is preferable but somewhat more rare. Same procedure as for Aortic. Called TMVR.

[Hidden in reply to Hidden]

Good morning, SalemLake (it's 2:15 AM local time) and thanks for your insights. Sounds like you are more than casually acquainted with diagnoses of heart issues. I'll do my best to try to sneak a peak and to flatter the sonographer.

My discomfort now is quite intense (~8, scale 1 - 10); I should characterize same as "pain" rather than discomfort. I was going to post a separate comment to follow-up on a comment made some time ago by SueJohnson, Subject: Pain. Though I have the "creepy-crawlies," my RLS also is accompanied by literal pain. Feels as though my limb (legs) are on fire. I was surprised that one person who replied to her noted that "pain" was not part of the current diagnostic factors. Rather odd since neurological issues often are characterized by pain in the form of a burning sensation.

Making matters worse, I am sneezing (and coughing a bit). These appear to be consequences of tramadol discontinuance. Though I am very tempted to take some tramadol from the vial on the shelf, I am refraining from doing so. ...Only a bit less than 45 minutes till my RLS will begin to recede from its nightly crescendo.

Be well.

[Purpleyam]

I commend you for your persistence in coming off not 1, but 3 medications for RLS over the year! I found your musings very interesting and informative. I'd like to know how you are managing currently as your post was 8 months ago. I'm just beginning my change from pramipexole to pregabalin and would like to know if your dosage of pregabalin has stayed the same, are your symptoms minimal.

[Hidden in reply to Purpleyam]

Good morning, Purpleyam, and thank you for your inquiry. I haven't posted in a long while and had "unsubscribed" due to various factors. I re-subscribed to acknowledge my receipt of your inquiry and to reply to same.

Much has changed regarding my health, medicines, and RLS discomfort ("pain").

Following the discomfort of dopamine agonist withdrawal syndrome (DAWS) and whatever withdrawal symptoms, if any, I experienced following the cessation of Tramadol, my RLS stabilized: my RLS discomfort was the least that I had experienced in decades. Little daytime discomfort; the evening discomfort (at its worst between ~1:30 AM - 3:00 AM) was manageable with one or two capsules of pregabalin (~50 each). As/if necessary, additional relief was had with two tablets of "Advil Dual Action" (ibuprofen + acetaminophen).

At the suggestion of my new neurologist, three months ago, I discontinued my daily iron supplement (~65 mg iron/325 mg ferrous sulfate). My descent to Hell began. Within weeks, my RLS had returned with a vengeance. And not just late evening and early morning.

Meanwhile, I had been shunted from doctor-to-doctor to diagnose an unrelated condition: shortness of breath and "chest (upper back) pain" that first had manifested in December 2022 after I had sprinted in the rain in a misguided effort to catch a bus. Ultimately, it was determined that I had "triple vessel coronary artery disease."

I declined "open heart surgery" in favor of Percutaneous Coronary Intervention (PCI). In all, three PCI's were performed. Five stents and one vascular closure device were implanted. I now daily take baby aspirin, rosuvastatin and Brilinta. Ironically, though the PCI's were "successful," my shortness of breath and chest (upper back) pain persists! [Having researched further, and at the risk of appearing paranoid, I note that rarely reported side-effects of one Covid vaccine (which I had taken) are shortness of breath and chest pain that first is experienced after running. Hmmm!]

Per my cardiologist's recommendation, I no longer am allowed to take Advil Dual Action or any NSAIDs other than the single daily baby aspirin.

In advance of the PCI's, many blood tests had been performed. I reviewed same and was surprised to note that my blood iron level was low--not just by RLS standards but by the standards of "normal" persons. I discussed same with my primary care physician. At the suggestion of my primary care physician, about six weeks ago, I recommenced my daily iron supplement. I notified my neurologist that I had done so.

Since recommencing the iron supplement, my daytime RLS appears to have moderated. Hopefully, with the continued ingestion of the iron supplement, my RLS will improve to its earlier post-DAWS status.

Final word regarding pregabalin: Some have observed that the pregabalin "takes time" to build up in your system, and that, unlike narcotics, the effects may not be immediately felt. Others also have observed that the relief attained is dose-dependent (i.e., that the greater that dose, the greater the relief). My observations--consistent with the opinion of my neurologist--are to the contrary. When RLS discomfort strikes--day or night--I reach for pregabalin; relief is had within about 30 minutes. A single 50 mg capsule will suffice. Increasing the dose neither adds greater relief nor enlarges the duration of relief.

To be sure, the duration of relief that I experience varies considerably. While a single 50 mg capsule taken ~4:00 PM might provide six hours of relief, a single 50 mg capsule taken ~11:00 PM provides only two hours of relief. And regardless of when taken or how much taken, there now appears to be little relief for the RLS discomfort experienced nightly between ~1:30 AM - ~3:00 AM.

Hope this information is helpful. Be well.

[Purpleyam]

I appreciate you joining up again in order to reply to me. It seems that you've been through hell and back. 😈 I'm sorry you have had such a rough time with the triple vessel coronary disease. I wish you well. I do see many people posting that its critical to keep up ferretin levels, and to retest routinely. I will request that as well. I just ordered iron bisglycinate and will take it at bed time. In feeling positive about my use of Pregabalin now, at 100mg now; already sleeping more soundly but awake around 5:30am mostly well rested. I'm travelling to Europe from Canada soon so hopefully I can adjust to the new time zone without crazy RLS! Thanks again, be well.

[Hidden in reply to Purpleyam]

Good evening, Purpleyam. I hope your travel goes well. Oddly, those few times that I've traveled by air, my RLS never seemed to bother much while en route. Once I arrived at my destination, it was another story altogether.

In case you are unaware, please note that the terms "blood iron" as used by me (and by some others) is a generic term--an umbrella of sorts--that embraces various elements (iron, ferritin, transferrin iron saturation, hemoglobin, hematocrit, etc.). No single blood test of the many that I recently underwent measured all elements.

Having discussed the results of the blood tests with my physicians, my non-expert observations were that, by some measures (e.g, iron, ferritin), my blood iron was at the lower end of the normal range. But by other measures (e.g., hemoglobin, hematocrit, RBC), my blood iron was below normal. Mindful of these test results, my primary care physician recommended that I recommence taking the iron supplement @ 65 mg daily.

You may wish to discuss with your doctor the elements that will be measured to make sure that any blood iron or blood ferritin tests that are performed are comprehensive and relevant to RLS.

Be well.