Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Hello All, I was recently added to this group and I have been periodically reading some great success stories regarding LDN and various illnesses. I have suffered from constant head tremor and random internal and hand tremor for 25 years, literally ripping me of quality of life... I will be 42 in early June and that marks the 25 year point. I have done just about everything possible for tremor (Western and Eastern med, naturo/homeopathic routes, etc.) The naturo/homeopathic route seemed to have some greater benefit in healing or controlling tremor... It was getting so bad last year, I was pursuing brain surgery to stop it, that is on back burner now. A gal I met through another group and belongs to this one, told me about LDN.... Not one doctor has EVER mentioned this to me, nor have I stumbled across it in my 25 years of tremor and other movement disorders research. Now to the questions. Has anyone here utilized LDN for essential tremor and had any long term benefit from it, reversal effects from it? Any notable side effects or withdrawals from it? I am a bit hesitant in taking any western med drug due to last one doctors had me on, it about killed me in withdrawal. So I move slowly and cautiously with this particular situation and am trying to acquire as much info as possible. I have searched your group's posts on tremor, parkinson's (which I don't have) and LDN and read thru a few posts where it helped greatly. Any other comments, feedback, etc. specific to tremor would be valued and appreciated. Thanks for letting me join this group.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Hi , If your " tremor " isn't from Parkinson's is it related to an immune response of some sort ?? If it is, then I would think that LDN would have some benefit. My brother had Guillain Barre Syndrome which is an autoimmune disease similar to MS, only you can recover from it. He did recover but does have some residual hand tremor left. I've told him about LDN...he's was going to ask his neurologist about it. Jann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Hi , I also have a pretty bad tremor. I've had it in my hands ever since I was in early grade school and within the last 5 years, I've developed a tremor in my head. The tremor got significantly worse about 3 years ago and that is what took me back to the neurologist, because I had heard that there were new treatments for it. That's when they found my MS. My father and my paternal grandmother both have a tremor too and throughout my childhood and into my adult life, doctors routinely tested my thyroid and all the other obvious stuff that contributed to tremors, and nothing ever came back abnormal, so it was diagnosed from the get-go as a " genetic tremor. " Now they call it a " benign familial tremor. " Apparently, however, the onset of the MS made it worse. I started taking Inderal, which is usually prescribed for high blood pressure (started out on 30mg and after a few months they bumped me up to 50mg and several months back, they increased it to 80mg.) I know it helps, because if I forget to take it for a couple of days, I notice a big difference, but I still shake really badly, even taking it. I've tried a drug called Topomax, along with the Inderal, but I had some very unpleasant side-effects from it (dizziness, blurred vision, etc.) and so I stopped taking it. I'd rather be shaky. I've been on LDN for my MS since September 2007 and while I notice a decrease in all my other MS symptoms, the LDN did not seem to have any effect, whatsoever, on the tremor. I go back to see my neuro/MS specialist next week and I plan on asking him if there is anything else we can try, because it really is very disruptive to my normal life. I drop things constantly, because my hands shake so badly, and most of the time, I feel like I could register on the richter scale, like an earthquake. It makes me very self conscious sometimes, especially when I'm having to give oral presentations at school. (I'm 40 years old, by the way.) I've heard that LDN has been used to treat Parkinson's disease, which, I think, is indirectly related to the family of " essential tremors, " but I'm not sure what it's been found to do for persons with Parkinson's. I hope this helps and please don't hesitate to email me privately, if you'd like to chat more about the tremor. It's always nice to hear from a fellow shaker. Best wishes, > > Hello All, > > I was recently added to this group and I have been periodically > reading some great success stories regarding LDN and various > illnesses. > > I have suffered from constant head tremor and random internal and > hand tremor for 25 years, literally ripping me of quality of life... > I will be 42 in early June and that marks the 25 year point. > > I have done just about everything possible for tremor (Western and > Eastern med, naturo/homeopathic routes, etc.) The naturo/homeopathic > route seemed to have some greater benefit in healing or controlling > tremor... It was getting so bad last year, I was pursuing brain > surgery to stop it, that is on back burner now. > > A gal I met through another group and belongs to this one, told > me about LDN.... Not one doctor has EVER mentioned this to me, nor > have I stumbled across it in my 25 years of tremor and other movement > disorders research. > > Now to the questions. Has anyone here utilized LDN for essential > tremor and had any long term benefit from it, reversal effects from > it? Any notable side effects or withdrawals from it? I am a bit > hesitant in taking any western med drug due to last one doctors had > me on, it about killed me in withdrawal. So I move slowly and > cautiously with this particular situation and am trying to acquire as > much info as possible. > > I have searched your group's posts on tremor, parkinson's (which I > don't have) and LDN and read thru a few posts where it helped greatly. > > Any other comments, feedback, etc. specific to tremor would be valued > and appreciated. > > Thanks for letting me join this group.... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Neurofeedback is worth trying for essential / familial tremor. www.eegspectrum.com www.ochslabs.com Geir Flatabø 2008/3/28, <otterpup1967@...>: > Hi , > > I also have a pretty bad tremor. I've had it in my hands ever since > I was in early grade school and within the last 5 years, I've > developed a tremor in my head. The tremor got significantly worse > about 3 years ago and that is what took me back to the neurologist, > because I had heard that there were new treatments for it. That's > when they found my MS. > > My father and my paternal grandmother both have a tremor too and > throughout my childhood and into my adult life, doctors routinely > tested my thyroid and all the other obvious stuff that contributed to > tremors, and nothing ever came back abnormal, so it was diagnosed > from the get-go as a " genetic tremor. " Now they call it a " benign > familial tremor. " Apparently, however, the onset of the MS made it > worse. > > I started taking Inderal, which is usually prescribed for high blood > pressure (started out on 30mg and after a few months they bumped me > up to 50mg and several months back, they increased it to 80mg.) I > know it helps, because if I forget to take it for a couple of days, I > notice a big difference, but I still shake really badly, even taking > it. > > I've tried a drug called Topomax, along with the Inderal, but I had > some very unpleasant side-effects from it (dizziness, blurred vision, > etc.) and so I stopped taking it. I'd rather be shaky. > > I've been on LDN for my MS since September 2007 and while I notice a > decrease in all my other MS symptoms, the LDN did not seem to have > any effect, whatsoever, on the tremor. > > I go back to see my neuro/MS specialist next week and I plan on > asking him if there is anything else we can try, because it really is > very disruptive to my normal life. I drop things constantly, because > my hands shake so badly, and most of the time, I feel like I could > register on the richter scale, like an earthquake. It makes me very > self conscious sometimes, especially when I'm having to give oral > presentations at school. (I'm 40 years old, by the way.) > > I've heard that LDN has been used to treat Parkinson's disease, > which, I think, is indirectly related to the family of " essential > tremors, " but I'm not sure what it's been found to do for persons > with Parkinson's. > > I hope this helps and please don't hesitate to email me privately, if > you'd like to chat more about the tremor. It's always nice to hear > from a fellow shaker. > > Best wishes, > > > > > > > > Hello All, > > > > I was recently added to this group and I have been periodically > > reading some great success stories regarding LDN and various > > illnesses. > > > > I have suffered from constant head tremor and random internal and > > hand tremor for 25 years, literally ripping me of quality of > life... > > I will be 42 in early June and that marks the 25 year point. > > > > I have done just about everything possible for tremor (Western and > > Eastern med, naturo/homeopathic routes, etc.) The > naturo/homeopathic > > route seemed to have some greater benefit in healing or controlling > > tremor... It was getting so bad last year, I was pursuing brain > > surgery to stop it, that is on back burner now. > > > > A gal I met through another group and belongs to this one, > told > > me about LDN.... Not one doctor has EVER mentioned this to me, nor > > have I stumbled across it in my 25 years of tremor and other > movement > > disorders research. > > > > Now to the questions. Has anyone here utilized LDN for essential > > tremor and had any long term benefit from it, reversal effects from > > it? Any notable side effects or withdrawals from it? I am a bit > > hesitant in taking any western med drug due to last one doctors had > > me on, it about killed me in withdrawal. So I move slowly and > > cautiously with this particular situation and am trying to acquire > as > > much info as possible. > > > > I have searched your group's posts on tremor, parkinson's (which I > > don't have) and LDN and read thru a few posts where it helped > greatly. > > > > Any other comments, feedback, etc. specific to tremor would be > valued > > and appreciated. > > > > Thanks for letting me join this group.... > > > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Hi Jan and thanks for replying.... My tremor is genetic and not immune related... perhaps LDN wont help me then? I wish your brother well... this has been an enormous and long journey for me in trying to stop or help control this tremor... He is lucky to only have a bit of hand tremor... head tremor blows lol.... thanks for replying.... and if u or anyone else has heard of any success with LDN and familial/essential tremor... would love to hear about it... anyone feel free to directly email me too. Gail thanks on the neurofeedback suggestion... I am not employed (and gaining employment is becoming mroe and more difficult when all they seem to focus on is uncontrollable movement) and right now cant go that route... > > Hi , > > If your " tremor " isn't from Parkinson's is it related to an immune > response of some sort ?? > > If it is, then I would think that LDN would have some benefit. My > brother had Guillain Barre Syndrome which is an autoimmune disease > similar to MS, only you can recover from it. He did recover but does > have some residual hand tremor left. > > I've told him about LDN...he's was going to ask his neurologist about > it. > > Jann > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Have you tried Mirapex [low dose naltrexone] Re: LDN and Tremor Hi Jan and thanks for replying....My tremor is genetic and not immune related... perhaps LDN wont help me then? I wish your brother well... this has been an enormous and long journey for me in trying to stop or help control this tremor...He is lucky to only have a bit of hand tremor... head tremor blows lol....thanks for replying.... and if u or anyone else has heard of any success with LDN and familial/essential tremor... would love to hear about it... anyone feel free to directly email me too.Gail thanks on the neurofeedback suggestion... I am not employed (and gaining employment is becoming mroe and more difficult when all they seem to focus on is uncontrollable movement) and right now cant go that route...>> Hi ,> > If your "tremor" isn't from Parkinson's is it related to an immune> response of some sort ?? > > If it is, then I would think that LDN would have some benefit. My> brother had Guillain Barre Syndrome which is an autoimmune disease> similar to MS, only you can recover from it. He did recover but does> have some residual hand tremor left. > > I've told him about LDN...he's was going to ask his neurologist about> it. > > Jann> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Thank you, Geir. I'll ask my neuro/MS specialist about it next week, when I see him! > > Neurofeedback is worth trying for essential / familial tremor. > www.eegspectrum.com > www.ochslabs.com > > Geir Flatabø Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Aletha, I have not tried Mirapex.. I think the reason it was never mentioned is that it is deemed for PD, but hey tremors are tremors and if it works for one perhaps it works for the other (ET)... I am just extremely western med gunshy... lots of nightmares for many years on so many ET off labeled drugs... been researching mirapex and will continue to do so.... I am not employed and havent been for almost 3 years.. long story... but having tremor is making it more difficult to gain employment... sigh... so paying for much of anything, even a new medication, is getting more difficult, since i would be paying full price... > > > > Hi , > > > > If your " tremor " isn't from Parkinson's is it related to an immune > > response of some sort ?? > > > > If it is, then I would think that LDN would have some benefit. My > > brother had Guillain Barre Syndrome which is an autoimmune disease > > similar to MS, only you can recover from it. He did recover but does > > have some residual hand tremor left. > > > > I've told him about LDN...he's was going to ask his neurologist about > > it. > > > > Jann > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Dear , We just watched Sicko. Yikes. It was surprisingly well done. Maybe we should all go up to Canada. But they even have a similar problem with dispensing LDN. Same with England and Australia. You would think that it would save the socialized medicine countries a lot of money. Miraplex might be helpful, but it also has side effects. Although my mom seemed go without side effects. All my best Aletha [low dose naltrexone] Re: LDN and Tremor Aletha,I have not tried Mirapex.. I think the reason it was never mentioned is that it is deemed for PD, but hey tremors are tremors and if it works for one perhaps it works for the other (ET)... I am just extremely western med gunshy... lots of nightmares for many years on so many ET off labeled drugs... been researching mirapex and will continue to do so.... I am not employed and havent been for almost 3 years.. long story... but having tremor is making it more difficult to gain employment... sigh... so paying for much of anything, even a new medication, is getting more difficult, since i would be paying full price...> >> > Hi ,> > > > If your "tremor" isn't from Parkinson's is it related to an immune> > response of some sort ?? > > > > If it is, then I would think that LDN would have some benefit. My> > brother had Guillain Barre Syndrome which is an autoimmune disease> > similar to MS, only you can recover from it. He did recover but does> > have some residual hand tremor left. > > > > I've told him about LDN...he's was going to ask his neurologist about> > it. > > > > Jann> >> Quote Link to comment Share on other sites More sharing options...
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