A number of folks mentioned that, in addition to RLS, they suffered from other ailments, some of which also are incurable and painful. I empathized with all, sometimes feeling both fortunate and guilty that I "only" had RLS. Looks like I needn't feel fortunate or guilty any longer.
The initial diagnosis has not yet been confirmed. Conceivably, all will be OK. However, following a second examination earlier this week, my primary care physician again expressed her opinion that I "may have" significant heart disease, which, if confirmed, may warrant timely intervention by a cardiologist. We'll know more following tests next week at an area hospital.
I told my primary care physician that a referral to a cardiologist would be pointless: following open-heart surgery, my brother had been in a coma for six months; though he awoke from his coma, his life thereafter was not something that I could abide. My brother died at age 69; I'm already years older than that. Untreated, my life expectancy is an additional two - three years. That's plenty.
There are, however, some new "less invasive" procedures. If I do undergo one of the less invasive procedures, it will affect not only my heart, but my circulation generally. What effect, if any, will it have on my RLS? If my earlier speculation that RLS might be a circulatory disorder rather than a neurological one is correct, the effect will be positive. I'll keep you posted.
I am so sorry to hear about that. If you do end up having surgery tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine.
Hi, SueJohnson, and thank you for your compassionate and custom-tailored reply. Hopefully, following next week's test(s) and later analysis by my new primary care physician, I won't need major surgery. If I do, I will revisit your comment and bring a copy of same with me before I "go under the knife." Unfortunately, the list of contraindicated medicines is long, and I generally am averse to being completely put to sleep.
Incidentally, there are some new forms of anesthesia that are a hybrid between a local anesthetic and being put to sleep. I experienced same during some major dental work. I was awake and comprehended all that was going on about me, but felt nothing anywhere.
As for the RLS Foundation: I am in US, and infer that you are referring to RLS.org? If so, I was a dues-paying member for 20+ years and regularly donated to that organization. In my opinion, however, something happened to that organization when they relocated from Rochester, MN to Austin, Texas: Less personal; more commercial; and lost sight of original purposes of organization. I wrote to them about a year ago to cancel my membership.
Unfortunately, I don't recall its name. But having just done a quick Internet search in response to your question, here's what I came up with.
The anesthesia appears to be known as "intravenous conscious sedation" (falls somehwere between "local anesthetic" and "general anesthesia"). A bit more research identified a number of drugs among those used for IV conscious sedation, including: diazepam (Valium); midazolam (Verced); and propofal (Diprivan). An earlier, non-intravenous approach (nitrous oxide) appears to have fallen out of favor.
I am not a health care professional. Though I experienced in the context of dental procedures, I understand that it also is used in non-dental venues where it is known by two other names ("conscious anesthesia," and "procedural anesthesia"). In these venues, other medications (including Fentanyl) appear also to be used and may be administered other than intravenously (orally).
I will, of course, discuss with cardiologist the available options if it does get that far.
My new general practice physician is aware of the current RLS algorithm and which medicines are counter-indicated (her facility is a member of the Mayo Clinic Care Network, and we already discussed adverse effects upon RLS of some medicines). My soon-to-be new "sleep expert" neurologist and I have an appointment for some-time long after any heart surgery would have been performed.
Between my next meeting with my physician and with my neurologist, the great unknown is my cardiologist. If it does get that far, I will bring with me my "List of Medicines" that adversely have affected my RLS, supplemented to include other medicines that you and others have noted adversely affect the suffering of those with RLS.
Hi there RLSIcon- So sorry to hear of your troubles and I do hope the outcome is not too bad. A lot of on this site have other medical problems as well, as I do. I have just had another ailment added to my list as I have been diagnosed with type 2 diabetes. To be honest I can cope with all my other ailments (which include a rare blood cancer for which I take daily oral chemo for life) but I find the restless legs the worst. RLS is the one which causes me the most grief, sleeplessness, and misery. I do wish we could get it over to the whole world how desperate we can feel with this illness and how important it is that much more knowledge be shared world-wide and all doctors taught about RLS at student level. I honestly believe that "restless legs syndrome" is a completely silly name for such a life-changing illness. People do not take it seriously and I have had it said to me "surely you can keep you legs still". It is good I am not a violent person!!!!!
Regarding your heart problems I have read that every time we suffer RLS it puts our blood pressure up and I know this is so in my case. It must put a lot of strain on the heart.
Anyhow I am rambling on and I just want to say I hope you have a good Christmas in spite of the pending investigations.
Hi, Jelbea, and thank you so much for your compassionate (and inspiring) reply. Heart ailments (father, brother), cancer (father; mother), and diabetes (father; brother) run in my family. I thought that I had escaped that fate ...the closest that I had come was being informed that I was "pre-daibetic." A change to diet appears to have mooted the latter.
For much of my life, I exercised and had "normal" BP. Several years ago, one doctor noted that it was higher than it should be; another doctor noted that the large day-to-day differences might warrant further examination. But nothing came of that.
Interestingly enough, since my current doctor first noted potential heart issue following first exam a bit over two weeks ago, I began some minor exercise. Since then, my BP appears to have stabilized and otherwise appears to be "normal." I'll know more two weeks hence.
Firstly, sorry to hear that you may have significant heart disease: let's hope that the final diagnosis and prognosis may be more hopeful.
The fact that your brother went into a coma and then had a poor quality of life after heart surgery, while distressing, does not of course preclude the possibility that you could have exactly the same procedure but with entirely positive results.
Yes, many of us have other ailments as well as RLS, but I view that as as much a factor of our mean age as anything else. Treatment for these other conditions *can* impact on RLS, but I had a mini-stroke, hernia repair surgery and six months of treatment for prostate cancer last year - and the only impact on my RLS was an ignorant prescription for statins. (I say ignorant because the specialist consultant that did this knew that I had RLS but didn't know about the adverse effect of statins on the condition, and frankly wouldn't have cared because she didn't think that RLS was worth worrying about).
As to whether a procedure affecting your circulation could affect your RLS, either positively or negatively, frankly who knows. We agree that there can be circulatory elements to RLS, that there are in mine, but it's certainly not the *only* factor in my RLS.
Anyway, at the moment this is all supposition. Have as good a Christmas as possible, and all best wishes for next week's investigations and a positive start to 2023.
Good day ChrisColumbus, and thank you for your reassuring and insightful reply. I empathize with your circumstances and feel somewhat selfish for having presumed that my circumstance was in any way worse than that of any others.
Yeah, just because one operation went bad doesn't mean that another will. But--at the risk of sounding cooky--my ancestry does back to the parts of Europe where people made unshakeable curses upon families. I've long-since identified the originator of my family curse. Were I inclined, I could write a book about it. Story for another day.
Bottom-line: Even if the odds are 1 in 1,000 that an untoward event would ensue following surgery, I am 100% certain that I would be among that small percentile for which there were complications. Besides, if push can to shove, I would choose not to have open-heart surgery, even if all went correctly. Hopefully, I won't need surgery; and if I do, maybe one of the less-intrusive new procedures would suffice?
Sorry to hear about "statins." Another "expert"--this one in internal medicine--suggested that I take "statins" (cholesterol? high blood pressure). What I later learned and which he forgot to tell me was, among other things: (1) that statins may be counter-indicated in persons with diabetes (I was "prediabetic;" my father had type 2; my brother developed type 1); and (2) once you start with statins, you should plan to take the rest of your life, as the cessation of same may cause the high blood pressure to return with a vengeance. At the suggestion of a co-worker, I tossed the Rx in the trash and never looked back.
Wishing you and yours a Happy Holiday Season (Merry Christmas/Happy New Years if you prefer). Be well.
Thanks. And on the subject of 'statins for life': I got my consultant to move me off statins on to Ezetimibe (for cholesterol). I *may* be on this for life, but it least it doesn't affect my RLS. Merry Christmas.
What a stupid thing for a doctor (just an internist at that) to say to a patient. What exactly does she think is wrong with your heart, or blood vessels? What tests did she run? If she didn’t run any tests and simply based her statement on BP alone, or listening to your heart, I would drop her like a hot potato.
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Good evening, SalemLake. Ouch! I am pretty picky and often too quick to criticize. But in fairness to the doctor, she strikes me as very conscientious, knowledgeable, circumspect and conservative in her efforts. Though she has yet to perform a complete physical examination, she did do various non-intrusive tests other than just applying a stethoscope or taking my blood pressure.
Though I didn't want to get into all the details, perhaps some details are necessary as I did not wish to imply nor did I wish to to have others infer that there was any basis for criticism.
Thus far, I've had two meetings with this doctor. Each was far longer than I had expected, each lasting more than one-half hour. I found her bedside manner commendable, noting that she was trying to inform me of my heart condition gently.
During our first visit, she suggested only a heart murmur. She referred me for a heart ultrasound with the expectation that it could be scheduled in advance of our second meeting; when I experienced issues scheduling same, her office personally intervened to schedule at the earliest date which, regrettably, would not be before our next meeting.
During my second visit, an EKG (electrocardiogram, ECG) was performed. She then expressed her further (and what appeared to be a worse) opinion regarding the condition of my heart. This, together with the symptoms that I orally communicated to her, were sufficient for her to make a preliminary diagnosis regarding the current condition of my heart. Still, she made clear that her opinion was qualified, and subject to further tests which might eventuate as/if necessary in a referral to a cardiologist. Later research by me confirmed that she was spot-on, given the information then available to her.
In addition to the foregoing, she also ordered multiple blood tests (not only for Ferritin, but for diabetes and other things), received the results of same, and messaged me with her findings the evening of the day in which the results were reported. A+ all the way.
Hope that this helps to allay any untoward inferences. Apologies if you or anyone else was given to believe otherwise based on my earlier posts.
Be well.
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I’m glad you like her. You don’t hear a heart murmur in a patient (which is so unbelievably common) then turn around and tell them they might have “significant heart disease.” That’s just creepy and wrong. As it sounds like you’re aware, it may indicate aortic stenosis. That’s no longer done via open heart surgery. It’s done percutaneously. I believe there’s no pain after the procedure and at most a two night hospital stay. Maybe one these days. We’re getting ahead of our skis,however.
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Hi, again, SalemLake, and thank you for your further and reassuring reply. Again, I was trying to keep things a bit private. But yes, her revised diagnosis was, as you suggested, some aortic stenosis. She used an adjective of some sort to grade the degree of stenosis--I'm too lazy to look up or to bother recalling--but it was an emphasis rather than a minimization of the degree of the condition.
Getting ahead of our skis? There are "Salem Lakes" in various places across the world. In the US, some in warmer parts, some in colder parts. Sort of narrows.
I never went skiing. Too dangerous for me. Was more into motorcycles. One crash left me in ER. Gave bike away and didn't ride again for years. Funny how folks who skied, played hockey, rode horses, etc., used to tell me how dangerous bikes were.
Be well.
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Hi, again, SalemLake. And thanks for mentioning the potential for less drastic intervention. I did some further research, and confirmed that the hospital with which my doctor is affiliated performs "Transcatheter Aortic Valve Replacement" (TAVR).
Their website goes so far as to state that "Within four to six hours following surgery," patients who have undergone TAVR are "up and walking." Hard to believe. But the hospital has an excellent reputation and I very much was impressed during my daily visits to a friend who had undergone back surgery there.
I was asymptomatic during my first exam with my current physician, when she nonetheless broached the potential heart issue. Ironically, it was only as I ran homeward in the rain that my current and continuing symptoms manifested themselves: shortness of breath/chest tightness following exertion, which do not completely resolve following extended periods of relaxation.
Thinking it was only a cold, I delayed informing the doctor of the developments; her office promptly called me to follow-up. At our second meeting, therefore, the focus was on both RLS and potential heart disease. I'll know more in early January.
Be well.
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Yep, TAVR is the way to go. Doesn’t even require general anesthesia.
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Thanks, SalemLake. If an option, I likely will pursue. My brother's open heart surgery had been decades ago, well before TAVR had been approved. But a former colleague of mine had had "open heart surgery" just several years ago, when TAVR had become a norm. I had (wrongly) inferred that open heart surgery was still the only option. Perhaps the advanced status of the heart's condition (absent immediate open-heart surgery, the patient would die) was relevant in both cases? Be well.
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Hi, SalemLake. I wish I could give you another "heart" (like) to thank you for your insights here and in the Miscellaneous ramblings that I posted elsewhere.
I had my "Complete Transthoracic Echo" earlier today. The test itself took the better part of an hour. I chatted with the sonographer as time and circumstances permitted, trying my best to keep at least one eye on the monitor. The results promptly were reviewed by a hospital cardiologist, and a detailed Report made available to me.
Though I have not yet met with my GP to discuss, the Report's Conclusions were sufficiently understandable to me that I would like to share. Though the Report found some minor issues with various aspects of my heart, there were no Conclusions suggesting Aortic Stenosis or any major heart damage.
The most significant Conclusion concerned the mitral valve: "Myxomatous prolapse of the posterior mitral leaflet. Mild to moderate MR [Mitral Regurgitation?]."
Though I am substantially relieved, the Report's Conclusions leave unanswered the cause of the sudden onset and persistence of shortness of breath and chest tightness which I first experienced a couple of weeks ago following a brief run in the rain while walking home. To that extent, I am disappointed with the otherwise favorable Report.
Thanks again. Be well.
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Wow, great news. Check that off your list. Sounds like you have a touch of asthma. Of which any of a million things could be the cause from allergies to Long Covid. I think the treatment is about the same whatever the origin. It sounds like a pulmonologist might be next on the list. Keep us posted.
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Good morning, SalemLake, and thank you once more for your insights. Your latest reply, however, belies your credentials: I no longer believe that you are "more than casually familiar with medicine;" rather, I now am convinced that you have a degree in medicine, and likely an advanced degree in cardiology.
To borrow a British phrase, your comments are--yet again--"spot-on." In fact, they are in accord with the observations made by my General Practitioner in advance of the ultrasound: though I didn't have Covid, I might have asthma induced by some other circumstance--perhaps an allergy or recent "cold" (viral).
I told the GP that, though I had seasonal allergies, the "pollen count" had been "0" for quite some time. She did not prescribe any medication for a "cold," "flu," Covid, or "RSV" (for others: respiratory syncytial virus), but instead suggested that I try Claritin (loratadine) which I started taking. Too soon to tell. [My later research confirmed that some studies had demonstrated that loratadine may relieve exercise-induced asthma. My symptoms first manifested as I hastily walked and ran part way home in the rain after my medical appointment.]
I am so sorry to hear this. You clearly have some difficult decisions ahead of you and I wish you strength.I hope the non invasive procedures improve both your heart disease and your RLS.
Wishing you a peaceful and calm Christmas time and a better New Year.
Good morning, Shumbah, and thank you for your reply. I'm not much of a traveler, but on the one and only flight that I had decades ago from US to Europe, folks commented that I must be a seasoned air-traveler because I was one of those fortunate few who were able to quickly and soundly sleep almost the entire trip. Could be something to your observation. Didn't stay long, though. Was on a flight back to the US the very next day. That's a story for another day. Be well.
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