This started out as a response to Manerva regarding the person who is taking gabapentin and this whole vitamin regimen and wearing compression socks (sleeves he calls them) and my thoughts on it but while it started out that way it’s grown so much deeper and morphed into gut wrenching pain and this is the abbreviated version. I don’t know what you’ll all think but I think I had to get this out and I hope it’s ok. I honestly don’t know what to do about it or even if I can do anything. Writing this, it all comes washing over me all over again. I honestly feel sick right now. What do I do? Shouldn’t I have let it go by now? Is something wrong with me? Can you please give me your thoughts?
Hi Manerva,
I think he thought he had found THE cure and we should just have to tinker with his formula and be fixed (don’t forget to thank him) while meanwhile at best he’s wasting s lot of time and money and worst is likely overdosing on some dangerous vitamins. Some vitamins that are fat soluble should NEVER be messed around with without a doctor’s or pharmacist’s input and lab work undertaken. They aren’t just supplements to be randomly taken but can kill you or make you very ill. Vitamins that are water soluble not quite as dangerous as you’re more likely to pee them out but even megadoses of them should be avoided at all cost. Not too long ago there was a study on megadosing vitamin C and the cardiovascular risks. Any fat soluble vitamin should definitely be used with care and definitely never megadosed. I think the misconception most people harbor is that they are just vitamins or just supplements but these are things that you cannot just willy nilly take in any old way, which is why doctors want you to list every medication and over the counter drug (acetaminophen, etc.), supplements, minerals and vitamins. I don’t know about the UK and others but in the US the FDA (Food and Drug Administration) doesn't regulate them like prescription medications. There are so many hacks out there trying to get your money that cannot be trusted. The only supplements I take are magnesium glycinate (best absorbed of all forms of magnesium and doesn’t cause diarrhea like magnesium citrate (in fact here in the US part of my colonoscopy preparation one time was a bottle of magnesium citrate and some stool softeners and cleaned me right out. Magnesium citrate is not meant to be used as a magnesium supplement) and vitamin D because I’m deficient and they test my levels every six months to make sure I’m in the correct range. I take the supplements that at least carry a UPC seal and come from a reliable source (there’s an organization in the US that’s Consumer Reports that puts supplements, vitamins, and everything from vacuums to microwave ovens through at least a year of testing by their scientists.
Herbal supplements are also very risky because they are not regulated and people’s best rationale for taking them is that “well they’re natural”. Well yeah sure so is cyanide, arsenic, poison mushrooms, and so much more but I’m not about to going making any tinctures of those in a big hurry. Tongue in cheek (somewhat) what I’m saying is you can’t just willy nilly start taking stuff because the internet told you it is safe.
You are so right about compression stockings. Those should be properly measured for and most often prescribed only if needed for circulatory needs unless you want to lose a limb wearing, like you pointed out, the one size fits all. In this particular case, the doctor does know best.
I’m not a person who believes doctors know everything because quite frankly they do not and when they don’t understand a disease like restless legs syndrome they can be more dangerous than not. Case in point my PCP (primarily care physician) new zip, nada, nothing about refractory restless legs syndrome, which I have and my last sleep specialist was one of the early docs to pick up on the need for an opioid, especially after we went through all the usual meds of dopamine agonists, gabapentin, in my case it was neurontin (which I know can be a lifesaver for some but left me feeling suicidal), drugs for epilepsy, drugs for Parkinson’s besides the dopamine agonists, Vicodin and so on until he hit on some research about methadone and finally I had hope again. I took this for over 13 years only at 10 mg until we went through the lovely opioid crisis here in the US and I had been forced out of the clinic I had been seen at for 15 years and told by the practice manager I was noncompliant because I was having some difficulty with social phobia (and had informed them of this and was seeing both my psychiatrist and a cognitive behavioral therapist but see because of the opioid crisis and methadone I was somehow a liability they just wanted to get rid of). They ever so nicely gave me a month of methadone knowing full well I’d never find a neurologist in a months time and when I tried to address this with the practice manager she told me it was my primary care physician’s job to take care of me. What I didn’t realize at the time, but they should of was, they were committing medical abandonment of me. Anyway, sorry to ramble and hijack this thread plus I’ve told my horror story. My doctor basically told me I was “fixated on methadone “ but through this group I found what I thought was my miracle savior who wasn’t afraid of methadone. Another long story short and A LOT of money we couldn’t afford later, thanks to inept care by my PCP and a doctor (who I’m not sure deserves to be called that because she betrayed her Hippocratic Oath of do no harm and almost, and I don’t say this to be dramatic, killed me by abruptly taking me off 8 mg (yes I know unbelievable dose) of ropinerole and putting me up 0.1 mg of clonidine (blood pressure med sometimes also used for addicts) morning and night and get this 25 mg of tramadol one time at bedtime only. That did not go well as you might imagine and she quickly put me back on 8 mg of ropinerole. I stopped the clonidine and tramadol myself after writing an emergency email to Dr. Buchfurher who explained how dangerous clonidine is (which I unfortunately got to experience myself when she had me increase, it even though I was on a blood pressure medication and I told her that several times, my blood pressure became dangerously low (surprise!!!) which I stopped and wrote my email and Dr. B. also said the tramadol used in that manner was absolutely useless. I wrote to her and told her I had emailed Dr. B. and had also written to Dr. Winkleman and I sent her the link to the Mayo Proceedings on the Proper Use of Opioid Therapy in RLS and Dr. Winkleman gave me his phone number if she wanted to talk. She had the audacity to tell me she well knew them both and the proper protocol!!!! Uh yeah, so how’d I end up on 8 mg of ropinerole (1 mg is the highest recommended dose). At this point she said she couldn’t give me methadone due to my sleep apnea (my score said I have minimal 8 AHI and 5 AHI is normal) and my MENTAL DISORDERS! What! I have anxiety and depression (which both run in my family and I’m well treated) and for a very short time a minor social phobia. My PCP turns out called her and told her the neurologist I had never even met had said all through my chart it was discussed I had not refractory restless legs syndrome but a psychosomatic disorder! So now (I don’t even know if this is legal) these two supposed doctors (one who called herself a RLS specialist, hah!) are saying because of the methadone I’m an addict, I’m crazy and I don’t know what else). Thankfully, this crazy witch to not get myself kicked off here thought I should be seen by her colleague a neurologist who specializes in yes restless legs syndrome! All in all I lost a year and a half of my life, took medication that could have killed me, greatly damaged my dopamine receptors, went 5 nights/days with not one minute of sleep, could not lie down, sit down or even stand still because my legs were so bad (Going to the bathroom was torture and my legs literally vibrated with the effort to sit still enough to pee), my husband would get up to find me broken down in tears, I would then have to watch the man I adore and seen cry only once cry, went to urgent care once and the emergency room twice because I wanted to commit suicide (I told them over and over and over again only because my legs and arms were so bad). I was drug tested, told I was an addict even though there was nothing at all in my urine with the methadone long gone), treated inhumanly, told I was crazy. I hadn’t slept so my blood pressure was sky high, I was hallucinating and my husband was scared because I wasn’t talking in a way that made any sense whatsoever. At that time I only had Mirapex to take but it wasn’t making me feel very good but I just gave up and took it because I knew it would work at least for a little bit before I augmented because I already had augmentation on every dopamine agonist I had tried 15 years ago. Finally I got in to see the neurologist who saved my life and a year and a half later I’m on methadone 10 mg once at 6:30 pm before bed. So while I do very strongly say don’t just blindly take vitamins, supplements, herbal remedies, compression socks, etc. I don’t trust all doctors either and think I’m always going to carry these scars that no one can see but are nonetheless very much a part of my experiences. I still don’t know what, or even if I can, to do about these people (I honestly can’t see them as doctors anymore) who betrayed, lied, broke their oath. I tried to complain to what they call here in the US “Patient Relations” but she got mad at ME and didn’t want to hear from me again. She basically told me since this person didn’t chart the phone call she made to my PCP it didn’t happen. My word against the good person..... what do I do with the pain, lies, betrayal, poor care (and that’s putting it at best), patient abandonment, lost life.
I’m really sorry all for high jacking this thread. I thought I was past it but it’s almost like PTSD.
I’m so, so very sorry.
Sus
Magnesium Help
My ongoing RLS battle
Magnesium and RLS
Tried everything and have found relief
