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Restless Legs Syndrome
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Disappointed but that's life

I mentioned in some recent posts that I have an appointment tomorrow (Sept 8) with my cardiologist. He's my fav! Was really looking forward to it because I had several things I really wanted to discuss and get his opinion on. When I got home last evening there was a message to call his office. I called this am and my appt was cancelled and will have to see his PA (Physician's Assistant-Mindy). Apparently he had to take medical leave though they can't say why. My unselfish side says I'm concerned for him and want him to be well. The selfish Burma wants him to be ok asap so I can talk with him about MY problems! I will see Mindy Oct 3, and I don't mind that part. She's very sharp and been involved in my care a long time so I'm lucky to have an alternate person in his office I trust. He should be back soon-just don't have a specific date. I do hope he has something not painful and easily fixed. Just moaning and sharing. Thanks for listening. burmag

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You panicked me there for a minute - I thought my wife was posting our sex life online :)

Yeah, we build ourselves up for these appointments, hoping it is going to be the one that leads to the break through, well I do any way :) and then there's the disappointment if its cancelled or doesn't go as we imagined it :(

On the plus side you've got an alternative with Mindy.

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Hi raffs. You're response was hysterical. Was signed off but checked my phone and had to sign back on to respond. Next time, I'll put my name first so you don't have to read the whole text to avoid panic!LOL. I'm happy to be able to talk to Mindy. She's so knowledgeable she's almost a doctor herself. And I do believe things fall into place in their own time. I'm just a control freak and I want things NOW. Anyway, love your sense of humor; you gotta have that to make it thru this life.

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If I hadn't my sense of humour I'd have nothing!

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PS Please tell your wife you were just kidding. LOL

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I TELL my wife nothing - I ASK!!!!

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Smart man!

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That's what she says - now she has me trained right :)

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Yes...VERY smart man.

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Ummm....we were?!

(Kidding)

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Smart man.

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Burma government my cardiologist resigned and I was really fond of him.my new one seems to be fine but it is like the League of Nations adjusting to different accents all the time.in one half hour I dealt with Polish French Spanish and American also English.It.s a good job they all communicate well or I would still be in the dark.of course they have to deal with me.

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I agree.Getting used to a new doctor is difficult. They don't yet know you and that makes it difficult sometimes to be treated as an individual. On a positive note, some of the best doctors I've had were educated outside of the US. To me they bring a perspective that drawing from just one medical culture might lack. My primary doctor is african-american, my cardiologist is jewish american, my sleep doctor is south african, my neurologist is egyptian, my surgeon is irish american, and my dentist is from India. I love them all.

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Burma government good grief I thought I was over doctored with a GP Neurologist Cardiologist and dentist but I trust them all which is half the battle and hopefully they find me compatible.

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Hi Retren, Don't worry; you'll catch up.. I have a head start "cause I'm 73. LOL. Burma

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OK. It's 4:20 AM. I'm REALLY going to bed now!!!!!!

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Burma I,m 81 and I,ts like being Methuselah with the lack of sleep etc.

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Hi Retren, You certainly don't sound old-you're posts are sharp and on target. I have to laugh at myself for my post earlier this morning about being older than you. It sounds like we both have racked up a lot of chronological years but our brains hopefully are swimming along at a much younger age. LOL . Sometimes my body feels like Methuselah but better that than my brain. Take care, Burma

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Thank you Burma I suppose one should be thankful I have never ever been in the sun so as a consequence it has been preserved and still get remarked about it.my mama always said to take care of it as it was the only thing I had going for me.She was a noted beauty and considered the rest of us just fell short.I read voraciously can,t say I retain like I did gossip yes but the rest?I hope we don,t get our fingers tapped for none RLS discussions .Am off to see my neurologist on Tuesday have to tackle her about running out of tramadol a day or so early.One would think the condition would wear out with advancing age my bouts are not as severe in episode since I eliminated gluten but they are more frequent.I understand it is rare to augment on tramadol so have to think of something to accompany it.i see the iPad did its own thing again and skipped skin.

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Dear Retren, I just learned yesterday that tramadol also can lead to augmentation. In a paper from Dr Buchfuhrer, but he was referring to another one. And I haven't read that one yet. So can't tell you (yet) whether augmentation symptoms of tramadol are similar to augmentation on DA's, or more like you describe: increased frequency.

Shall I look it up for you? It may help you to be armed with more specific info when seeing your neurologist on Tuesday. Don't know what the alternatives are if it is augmenation on tramadol. Maybe oxycodon. Or are you in the USA and will that be difficult?

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Lottethank you I am not allowed opiates because of my cardiac condition.I was on them for some 30 years and no problems with them same dosage no side effects.I don,t know what the difference is because tramadol is a synthetic opiate I have never asked no doubt not wanting to rock the boat.

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I like the fact that sometimes we all share things that aren't specifically about our rls problems. For me, it helps remind me that separating a disease from a whole person is not usually helpful . Rls affects us in many ways-emotional, spiritual, physically, relationships-family and otherwise. It helps me to know what others are going thru in all areas of their lives.

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Lotte forgot to mention I livebe in New York and the medical world have been put in a position regarding prescribing opiates with a fear of losing their license.It is very hard because of enforced regulations one way or another to get them anyway.also am not sure if the federal drug administration have them listed for RLS they do not for tramadol so insurance does not cover it.there is always something to contend with.patients with chronic pain have a very difficult time.

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Hi Retren, I should have read your second post about the recent difficulties of getting pain meds-specifically opiates now in the US. I have wanted to ask for a prescription but don.t want to start a med that may soon be taken away by our new president.I think he he is throwing the baby out with the bathwater. Yes, there is a prescription drug problem in this country but the answer isn't to deny treatment to those who truly are helped by it and don't abuse it. I feel for you and understand your dilemma. But keep trying. Sometimes a doctor just doesn't want to prescribe a drug for reasons that may have to do more with them than with you.If this med may help you, be persistent and keep searching. Good luck. Burma

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Hi Retren, I reacted to your phrase of 2 days ago saying "Am off to see my neurologist on Tuesday have to tackle her about running out of tramadol a day or so early." I understood from that that you are on tramadol and were in need for an earlier refill than usual for one reason or another.

That triggered me to share what I read about augmentation on tramadol.

Meanwhile, I have looked up the original papers reporting augmentation on tramadol.

One by Earley & Allen (2006) from Johns Hopkins Meds. They searched their database, found 9 patients with tramadol, 7 for RLS. Of those 7 :

- 1p took 50mg before bed for 5+ months successfully and no problems

- 2p were taken off within 2 months due to ineffective treatment

4 4p developed augmentation. They were on tramadol only; 3p with a max of 100mg/day, 1p with a max of 400 mg a day.

One other paper by Vetrugno et al (2007) of a 84y old woman developing augmentation on tramadol after 2 years: 1 yr on 50mg before bed and another year with adding another 50 mg at 6PM.

In sum, when you take tramadol (regardless whether it is hard to get or not), enjoy as long as it is effective, but be mindful of augmentation if the effectiveness wears off.

Retren, I understand this does not help you with getting a refill for your tramadol. Don't know what will, apart from being very convincing. You may want to throw in your age as an argument?

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Lotte thank you it,s about the only thing age is good for. The thing with the scheduled drugs they only allow 120 every 30 days which sounds a lot but in reality only lasts me unti 2or 3days before the end of my quota and I have been on just about everything in the last few years.themedication does not have any effect or the side issues are horrendous.the opiates only are effective my spouse used to call me his junky wife.My response I would rather that than deal with RLS.Last month I ran out 2days before my neurologist would not write up an alternative and the pharmacy are also afraid of running foul of the laws these days they finally sent some over but I had a n extremely unpleasant few days as being a cardiac patient into the bargain I did not have anything to give relief,which is why I have to tackle my neurologist.I am sure she is as exasperated as I am it is all so frustrating and really limits ones life style after all bopping up and down constantly makes one look as mad as a hatter.

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Have to wonder why we can only get 30 pills/month when there are 7 months with 31 days! And it's really annoying when we try to fill a prescription a few days early. It's like the system thinks we are all addicts. One of life's minor irritations.

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PS I also am a cardiac patient-doing well-but there are so many pain/relief meds-both Rx and OTC that we can't take, it gets hard to control pain. BTY, I have a theory and am interested in your thoughts. I have found a little info on this subject but most is vague. I really believe that coumadin/warfarin can contribute to rls. I actually heard this first from the emergency room doc I saw a couple of months ago when I had the reaction to pramipexole. Coumadin is a harsh drug and I am on a mission to get off of it. I am even considering having the Watchman Procedure.I wanted to talk to my Cardiologist about this but he was on medical leave so my appt was pushed back to next month. Anyway, enough on this subject from my end. Take care. Burma

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Burma government am on plavix had so many problems with Blood pressure medication my cardiologist said i need not take it and added I did not need it anyway!also suggested Out of the box had I thought of marijuana for my symptoms.I nearly fell off my chair.The idea of me imbibing caused a great deal of hilarity amongst my circle.In any case why was I taking something which was not necessary and causing problems?it defies belief.one gives trust and hopes it goes well.

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So true. I believe we (at least here in the US) are ONE OVER-MEDICATED SOCIETY! Just my opinion.

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It's me again, Retren. I don't wish anyone ill health but maybe if some top government people had to deal with chronic pain outlooks might change. Just my opinion. BTW, I've learned so much even from posts that don't mention rls specifically because often symptoms in one area turn out to affect us in other ways. We are whole patients; not just our nervous systems. Sometimes caregivers can get so wrapped up in one system they lose sight of how other systems can also be affected from the same disease.

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Burma I replied but seems to have disappeared into the ether the present health team by and large seem to be focused on technology and overlook the fact we are all individuals .what used to be taught has been overlooked for quick in and quick out they hardly have time to listen and access the problems which are not always volunteered at one appointment witness just reading posts on here when gradually more history is revealed.I hope I always did the right thing by my patients one of my compliments was being asked where I came from and being told said ,I thought you were special! Such a compliment to my training schools.

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It's good to hear that. I can tell from your posts that you are not only knowledgeable but compassionate, I hope I was the same. I don't think ( from what I've experienced during hospital stays) that nursing for some is not so much a calling as a career where employment is always available. Most nurses I've had have been wonderful but if occasionally get assigned to one who I don't feel comfortable with I ask to be assigned to someone else. It rarely happens but, just like other healthcare providers, it's everyone's right as a patient to to be treated with respect . Sadly, the bedside care has gone by the wayside in favor of what I call 'economically-oriented care.' Not the nurses' or doctors' fault; it's in the hands of the financial depts. I bet we would have a good time reminiscing about the good old days of nursing. As I've gotten older I've gotten more and more interested in sharing info to help patients know their rights and become less timid and in awe of health care providers. Also, like you said in your post sometimes I write a post that I think has a lot to say and then press the wrong computer button and delete the whole thing. Then can't find the energy to start all over. LOL.

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Hi Retren, Ir's me again. I was re-reading your post and saw you live in New York. I had also read LotteM's post about the article she mentioned about the Center for Restless Legs Syndrome from the Sleep Center at Johns Hopkins. Especially information from Dr. Christopher Earley. I wish I lived close enough to Baltimore to get a consult there. Atlanta has a lot of cutting edge medical care and research. But I haven't discovered anyone yet that is really interested in rls. If anyone has info I would love to hear. I know Emory University Hospital advertises they have a center. But there doesn't seem to be a specific doctor who stands out. My doctors are very good and I trust them but the most helpful info I get on rls so far has come from this website. I'm trying to help my rls without prescription meds as far as possible. Don't have a lot of faith in prescriptions anymore. I was given Pramipexole when diagnosed a coupleof months ago and had to go to the E.R for an allergic reaction.So now I'm gunshy, Also don't even want to risk augmentation. So working a lot on the food angle. We'll see how it goes. Take care, Burma

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Burmagthere is a doctor in California whom the RLS group on the site Health unlocked revere and he answers emails his name is Mark Buchfuhrer and he specializes in our condition.Mine has been from 10years old before that is was, growing pains and now 81 have dealt with decades of the nasty condition. As we are all different the only thing that has worked and I have tried everything Brewers yeast diet and on and on was dilaudid which was like a blessing as I was able to go about my life in a fairly normal fashion since I had my cardiac arrest the medical profession eliminated it not so sure more stress etc isn't,t involved now having to deal with the ongoing RLS when I get low I always invoke the Australian nurses and also tell myself I am British put my back to the wall and deal with it.

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Hi, Retren, Thanks very much. That is great info and I will followup later today. Always looking for docs and resources who are really interested in the day to day problems we all face. Without meaning to be critical, one of my docs-who I admire and trust-didn't mention ANYTHING about augmentation when prescribing pramipexole a couple of months ago. The only information I received was 'Sometimes it stops working," Nothing about how, why, or further problems. I think she was extra busy that day because she is always so thorough. I still think she is great and we all forget to give info sometimes. I know I did when still working. It was probably a gift from the Universe that I had a reaction and got off it after a week. I learned about the possible augmentation "miseries" from this website. Another reason to be open to info from anywhere. Again, thanks. I'm adding your info to my frequent "go-to" list. Take care, Burma (burmag)

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I have this horrible RLS..Have had it over 40 years.!

what is Augmentation?????

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Here is a link about Augmentation: rls-uk.org/news/augmentation

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Thanks, Kaarina. Augmentation is a new area for me ( and possibly for some docs who don't usually deal with rls.) Will go the website today. Maybe augmentation of meds is more widespread and rls meds are frontrunners. I don't know but it sure could use some more research. Thanks again for the lead. Burma

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Burma your doctor might not have been aware of the medications problems. If I had not put my foot down about mirapex I might be hooking and as big as a house.My doctor when I reported my complaints merely smiled which is all very well..I was only on it for a few weeks but when the side effects are revealed it is truly horrendous to go in sight unseen as t,were.

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Agreed. It seems to me-just my opinion-that modern meds are so much more dangerous re side effects than when I first started out in nursing. I prefer 'tried and true' meds whenever possible. It seems that often when a new "miracle' drug is introduced down the road some law firm is telling the tv audience that if they've had problems with it call "1-800-bad drug." It's very confusing and makes me want to stay away from meds as much as possible. I know sometimes we need meds and often they have helped me but I still would rather try something natural if I can. I agree my doc might not have had patients who talked about augmentation. I'm giving her the benefit of the doubt. She's a wonderful doctor and very compassionate. I wouldn.t change.

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Burma I am all for leaving well enough alone.how risky is the watchman? I had to be pressured to have a stent having seen some outcomes which were adverse..

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Burma government a pet peeve of mine are the innumerable names given to the same medication.

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Mine too. Especiallywhen there are many generic brands and companies to choose from. I don't believe all generic meds are created equal. And pharmacies often change companies when they can get a better deal. No one tells you and you wonder why your refill isn't working as well as it had been. I'm really ranting tonight. I guess I'm just tired. I usually handle my health problems better than this. I also don't like living in my senior housing with only old people. It gets me down. OK, my 'pity-party' is done! Thanks'everyone for taking the time to read this novel.

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I appreciate your concern. The Watchman is still surgery which always comes with risks and I will certainly not rush into anything. I understand from my research it is not so common as to be done at every hospital or by every cardiologist. I would not like to go somewhere else with strange docs. Fortunately it is done by my cardiologist/electrophysiologist at the hospital I use. One of the long term effects of coumadin can be plaque buildup and stiffening of the arteries. This is not mentioned often and I had to really dig to find this out. I know this site is for rls and we're talking cardio but the coumadin causes my feet and lower legs to swell which affects the rls. It's not related to heart failure and it makes the rls harder to deal with. Also, coumadin can cause a patient to have an amputation if circulation is affected.. (God this is a maudlin post-sorry everyone-.) I guess I'm just frustrated because I feel like meds and treatments that help one problem often cause significant problems with others. Also, these side effects are listed as 'rare'. Which means often they are dismissed. But someone somewhere is that 'rare' patient. Why not me? I do my own INR's at home weekly and have been taking this med for several years. I'm really tired of it. But I won't do anything in haste. Also, since I was an Operating Nurse for years, surgery doesn't scare me as much as it probably should, Sorry this post is so long. I was hoping to have some answers by now but this was the appt that got postponed because my doc had to go in medical leave. I'm sure the Universe has a plan here for me. I just want to be able to make a decision soon. the procedure is not an open one-just a catheter threaded into the heart and a small occlusive device is inserted ro close off an area where clots usually form. Simpler than the AV node ablation I had last year and which is doing fine. I don't really know what to do. I guess the right decision will come to me when it's time for me to know. Thanks for listening. I don't have family members who I would trust to help me make a decision.. They would mean well but their input wouldn't be helpful. Sometimes I get so tired of dealing with health problems. I know we all do! Well, enough about my probs for now.

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I hope your stent is doing the job. I would probably have to be pressured too. Do you have to take blood thinners?If so do you have problems? I know there are some newer ones that don't require testing or diet restrictions. I did try Pradaxa several years ago but the gastrointestinal side effects for me were bad, so I switched to old tried and true coumadin. But now that's giving me probs.

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Burma am on plavix and aspirin stopped the blood pressure medications had side effects as though Inwas over caffeinated all the time and then informed I did not need them if you please My post from yesterday seems to be lost I saw my neurologist who thank goodness increased my pill count so I can at least get to the 30days without running out.she mentioned I was lucky to be alive not sure if that is reassuring or disquieting. She also mentioned anew drug coming out for RLS. I think it was mentioned in the previous issue of Nightwalker I gave her the newest one she fell on tlike a ravening wolf.there are some informative articles published in it if a little self congratulatory.I had to correct this iPad no less than 4times surely the thing knows I can spell even if it is the English version.

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Hi Retren.. How is the plavix and aspirin working re side effects and with your rls? Maybe there is a way for me to get off the coumadin and avoid the Watchman procedure surgery. I will bring up your med combo with my cardiologist when he returns from medical leave. Thanks again. Burma PS Is Nightwalker a publication? Where would I get a subscription?

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Burma government have been on my medications for a couple of years had my blood drawn only once in that time.the Nightwalker is published by the RLS foundation it is published quarterly and one gets a medical alert card which can be presented on a flight (hopefully to get a n advantageous seat)_Restless legs syndrome foundation 3006Bee Caves Road STE D 206 Austin Texas 78746-5579 this is where I send my dues35dollars annually they have me listed with my old title sister still not sure how that came about.

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Hi Retren, Thanks for the address. Plan tojoin. Have started keeping an rls info file on 4 x 6' index cards in a shoebox. There are so many good tips; can't remember them all. Take care, Burma.

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Ps saw a lovely grouping of photographs of nurses on the Pinterest site I think they derived from the schools of nursing web site you might enjoy them.

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Thanks Retren, Will check them out tomorrow. Just got up from a nap. The power is expected to go out around Atlanta tonight, a friend has already lost power at his apt, so am trying to fit in sleep so I can use my cpap machine. If my power goes out I'll have to stay up. Very windy and rainy-lots of trees down. Will finish answering posts tomorrow-or maybe later if I'm up. I've kept my computer, phone, etc charged all day.

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Burma hope you keep your power Ours goes off frequently living in a neighborhood heavily treed. My son purchased a generator which is a god send when needed.As for medications dammed if you do dammed if you don,t.I was beginning to think I rattled like the Queen Mother.The tramadol is not a dopamine agonist so hope this is not augmentation although yesterday was an improvement so am inclined to think it was food triggered something the problem with food it seems to vary each mouthful.

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Hi Retren, I don't want to be too insistent, but tramadol CAN lead to augmentation. So if you are on tramadol and it looks like augmentation, it may well be augmentation. Other opiates (e.g. oxycodon) do not have records of augmentation. Only tramadol. And the infamous DA's.

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Hi Retren, Yes, my power stayed on but there are still a lot of power outages in Atlanta. I am not complaining because so many other people in Georgia had a much worse time. One of the main scary events in Atlanta during any bad weather is fallen trees. Atlanta is known as 'the city within a forest." We have so much beautiful greenery here and if you look at an aerial view of the city you see miles and miles of heavy green forest surrounding us. OK travelogue over! Also there is so much devastation in Florida and the Caribbean from the last 2 hurricanes (Harvey and Irma) it's picky for me to complain about a brief power outage. Augmentation is a new term for me (since rls) and it makes me think there are probably many more medicines used for other illnesses that could be categorized as causing augmentation; not only do many meds become ineffective after a while but maybe they leave you a little worse off after taking them. This seems like a huge area that could bear research. Would be very helpful when starting a new drug to know what might be waiting for us down the road. I also believe there is a lot to be learned about the triggers from food; especially (to steal a currently popular political term)-"fake food". ) Maybe this could be a reason for the 'epidemic' of rls?? Any thoughts? Take care, Burma (burmag)

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Burma government I know very often food causes my RLS I JUST ABOUT LIVE On starvation rations as a result. but it can,t be helped I often wonder if mine was triggered having wine in France just after the war they used to add antifreeze to it. I had what was called growing pains but then had what was a full blown attack I told my mother every time I thought of Louis 14 I had paralysis you can imagine the ripostes from my brother .hearng that .I have no doubt at all that whatever is going into food the land and livestock causes reactions in people who if we were eating like our ancestors the condition would remain quiescent

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I think you're onto something. BTY if you read my last night posts about how much I hate my blood thinner Coumadin. The way it prevents clots is to lower the blood's ability to clot in order to prevent strokes in high risk patients. No one wants to have a stroke and the Coumadin is closely monitered with frequent blood levels (I do my own at home) but the other side of the coin is very real bleeding risks. The way the action works is similar to the way rat poison kills rats; causes internal bleeding so they die. "Nuff said! You're idea also reinforces the fact that we never know with ingredients what the long term effects can be. And I agree that trying to eat as simply and as ancient as possible is the way to go. Take care. Burma

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'Fake food' LOL

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Dear lotte thank you for your concern to-day I see my neurologist and will hopefully get some answers althoughI hae not had an episode hank goodness since yesterday.

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