BrokenWings Posted February 5 Share Posted February 5 @arbor 23 hours ago, arbor said: I want to give an update which is challenging since it's still difficult day by day to know where I'm at. Generally I'm better, and getting better. It is indeed a great challenge and I feel the same way. I am glad to hear that you are improving overall. 23 hours ago, arbor said: Something else I can say is that today I feel better than I have since this all began. We know that tomorrow I could take these words back, but since yesterday, the tinnitus is the quietest it's been and my mood is actually (pinch me) up-beat. I seemed to in fact enjoy stopping and talking with people I ran into on my walk. I am happy to hear this. I feel the same in many ways, but I also know how quickly this can change. 23 hours ago, arbor said: I still feel phobic about meeting with doctors. You are not alone in this regard. Fortunately, you have found doctors who acknowledge AD withdrawal. We all know how hard it is to find these types of doctors. 2 BrokenWings: Introduction Zoloft (Sertraline) 50 mg to 150 mg Start Date: 2/1/2000 End Date: 1/26/2018 Quit cold turkey, Quit multiple times using recommended tapering from a psychiatrist over 2 weeks, Quit using rapid taper over about 1 year 150mg to 100mg to 75mg to 50 mg to 25 mg to 12.5 mg to 0mg. Klonopin (Clonazepam) 0.5 mg as needed Start Date: 2/1/2000 End Date: 3/1/2000 Quit cold turkey after one month. Link to comment
Oaktree1 Posted February 5 Share Posted February 5 On 2/4/2024 at 8:40 PM, arbor said: Eventually I read about using a pinching method around the spasming muscles which de-intensified the pain. My sleep was interrupted of course. A couple of days later I came down with a crackling aura in my left eye which in the past was diagnosed as a migraine caused by AD w/d. (My eye doctors aren't afraid to acknowledge problems with the AD's). The important thing for me was that the devastating depression and despair, so common during my earlier years following CT, did not come up. Hi Arbor, The last sentence gives real grounds for hope and it gives me a bit of hope to read that there that there are a few doctors out there that do acknowledge withdrawal apart even if they are too lazy/not convinced enough to put the connection with WD and neuropathy in his notes. I am with you on the phobia of doctors. On 2/4/2024 at 8:40 PM, arbor said: Something else I can say is that today I feel better than I have since this all began. We know that tomorrow I could take these words back, but since yesterday, the tinnitus is the quietest it's been and my mood is actually (pinch me) up-beat. I seemed to in fact enjoy stopping and talking with people I ran into on my walk. I was beginning to doubt given the long lasting debilitating symptoms you had that you would you write something like this - that is great news. On 2/4/2024 at 8:40 PM, arbor said: Anyway, back to the good news: I believe the iron supplements I'm now taking have helped. I'm much better. And this seems to me, at 5 years and 6 weeks, a miracle, golden, but delicate. (I still feel phobic about meeting with doctors.) - 'a miracle, golden but delicate' What a beautifully expressed ....sentiment? Probably the wrong word but you are good with words so you can work it out. I am glad to hear that you are getting better - that is a simpler way of putting it. Oaktree1 3 Currently tapering Mirtazapine; previously tapered Cymbalta 30mg from June 2018-Feb 2019 and Seroquel 150mg to zero from Oct-December 2020. Supplements for Hashimoto's disease and histamine issues relating to Mirtazapine: Vitamin D3 1,000mcg, bio-identical HRT, Selenium, Quercetin, Lutein, Zinc, Vitamin C, Omega 3. Mirtazapine Taper: 2021 16th Aug - transitioned to liquid from tablet by dissolving two 15mg tablets into a solution of 15 ml water and 15 ml maple syrup on a starting dose of what I thought was 7.5ml; 17 Sept - 7.31; 24 Sept - 7.13; 15 Oct - 6.95; 6 Nov - 6.78; 21 Nov - 6.61; 5 Dec - 6.51; 2022 - 1 Jan 6.41; 1 Feb - 6.1; 9 Mar - 5.8; 13 Mar - 5.9; 7 Apr - 5.8; 21 Apr - 5.7; 7 May - 5.63; 23 May - 5.55; 8 June 5.50; (got COVID on 12th June so held); 1 July 5.4; 15 July 5.32; 8 Aug 5.2; 15 Aug 5.1; 22 Aug 5; 19 Sept 4.9; 2 Oct 4.81; 13 Oct 4.71; (COVID Booster 17/10/22 so longer hold ); 1 Nov 4.65; 3 Nov 4.60; 10 Nov 4.55; 13 Nov 4.50; 17 Nov 4.45; 20 Nov 4.40; 2 Dec 4.30mg; 9 Dec 4.20mg; I discovered that the volumetric container measured 33ml rather than 30ml in Dec 2022. Following helpful advice from moderator OnMyWay (see her reply of the 5th March) discovered taper with the dilution was 3.8mg (calculated by dividing 30/33 so that every 1ml of solution has 0.90ml of Mirtazapine. 7.50 - 0.90= 6.6ml which was the starting dose on 16th Aug 2021 not 7.5ml). I decided to keep using the solution as I didn't want more change to deal with than I had to. 2023 17 Mar 4.1(3.7); 26 Mar 4.0(3.6); 14 Apr 3.9(3.51)28 Apr 3.8(3.42); 6 Jun 3.7(3.33); 19 Jun 3.6(3.24); 30 Jun 3.5(3.1); 19 Jul 3.4(3.06); 27 Jul 3.35 (3.01); 29 Jul 3.3 (2.97); 4 Aug 3.25 (2.92); 7 Aug 3.2 (2.88); 21 Aug 3.1 (2.79); 14.09 3 (2.7); 29th Sept 2.9(2.61); 15 Oct 2.8(2.52); 30 Oct 10 2.7(2.43); 13 Nov 2.65(2.38); 20 Nov 2.6(2.34); 26 Nov 2.55(2.29); 10 Dec 2.5(2.25); 2024 - 14 Jan 2.45(2.20); 22 Jan 2.40(2.16); 29 Jan 2.35(2.11); 2 Feb 2.3 (2.07);15 Feb 2.25(2.02); 22 Feb 2.21 (1.98); 29 Feb 2.17(1.95); 7 Mar 2.13(1.91); 21 Mar 2.05 (1.84); 31 Mar 2.01 (1.80); 14 Apr 1.90 (1.71); 29 Apr 1.80 (1.62); This is not 'medical advice' - my 'non medical advice' is don't get any more 'medical advice' or you may end up getting more 'medical treatment' i.e more drugs, DSM labels and/or ECT. Please do not PM me thanks. Link to comment
Oaktree1 Posted February 6 Share Posted February 6 14 hours ago, Oaktree1 said: 'a miracle, golden but delicate' What a beautifully expressed ....sentiment? Probably the wrong word but you are good with words so you can work it out. I am glad to hear that you are getting better - that is a simpler way of putting it. Sorry...the last sentence may have come across as impertinent - 'you can work it out'. My cognitive functions are not the best - I just meant to say it was as usual you expressed yourself beautifully. I hope you continue to improve. Oaktree1 2 Currently tapering Mirtazapine; previously tapered Cymbalta 30mg from June 2018-Feb 2019 and Seroquel 150mg to zero from Oct-December 2020. Supplements for Hashimoto's disease and histamine issues relating to Mirtazapine: Vitamin D3 1,000mcg, bio-identical HRT, Selenium, Quercetin, Lutein, Zinc, Vitamin C, Omega 3. Mirtazapine Taper: 2021 16th Aug - transitioned to liquid from tablet by dissolving two 15mg tablets into a solution of 15 ml water and 15 ml maple syrup on a starting dose of what I thought was 7.5ml; 17 Sept - 7.31; 24 Sept - 7.13; 15 Oct - 6.95; 6 Nov - 6.78; 21 Nov - 6.61; 5 Dec - 6.51; 2022 - 1 Jan 6.41; 1 Feb - 6.1; 9 Mar - 5.8; 13 Mar - 5.9; 7 Apr - 5.8; 21 Apr - 5.7; 7 May - 5.63; 23 May - 5.55; 8 June 5.50; (got COVID on 12th June so held); 1 July 5.4; 15 July 5.32; 8 Aug 5.2; 15 Aug 5.1; 22 Aug 5; 19 Sept 4.9; 2 Oct 4.81; 13 Oct 4.71; (COVID Booster 17/10/22 so longer hold ); 1 Nov 4.65; 3 Nov 4.60; 10 Nov 4.55; 13 Nov 4.50; 17 Nov 4.45; 20 Nov 4.40; 2 Dec 4.30mg; 9 Dec 4.20mg; I discovered that the volumetric container measured 33ml rather than 30ml in Dec 2022. Following helpful advice from moderator OnMyWay (see her reply of the 5th March) discovered taper with the dilution was 3.8mg (calculated by dividing 30/33 so that every 1ml of solution has 0.90ml of Mirtazapine. 7.50 - 0.90= 6.6ml which was the starting dose on 16th Aug 2021 not 7.5ml). I decided to keep using the solution as I didn't want more change to deal with than I had to. 2023 17 Mar 4.1(3.7); 26 Mar 4.0(3.6); 14 Apr 3.9(3.51)28 Apr 3.8(3.42); 6 Jun 3.7(3.33); 19 Jun 3.6(3.24); 30 Jun 3.5(3.1); 19 Jul 3.4(3.06); 27 Jul 3.35 (3.01); 29 Jul 3.3 (2.97); 4 Aug 3.25 (2.92); 7 Aug 3.2 (2.88); 21 Aug 3.1 (2.79); 14.09 3 (2.7); 29th Sept 2.9(2.61); 15 Oct 2.8(2.52); 30 Oct 10 2.7(2.43); 13 Nov 2.65(2.38); 20 Nov 2.6(2.34); 26 Nov 2.55(2.29); 10 Dec 2.5(2.25); 2024 - 14 Jan 2.45(2.20); 22 Jan 2.40(2.16); 29 Jan 2.35(2.11); 2 Feb 2.3 (2.07);15 Feb 2.25(2.02); 22 Feb 2.21 (1.98); 29 Feb 2.17(1.95); 7 Mar 2.13(1.91); 21 Mar 2.05 (1.84); 31 Mar 2.01 (1.80); 14 Apr 1.90 (1.71); 29 Apr 1.80 (1.62); This is not 'medical advice' - my 'non medical advice' is don't get any more 'medical advice' or you may end up getting more 'medical treatment' i.e more drugs, DSM labels and/or ECT. Please do not PM me thanks. Link to comment
Moderator Emeritus arbor Posted February 6 Author Moderator Emeritus Share Posted February 6 Thank you @BrokenWings We have followed a similar course in many ways and your comradery has been so helpful for me. Since we were both on sertraline for such a long time, our similar trajectory reinforces various patterns in its w/d. I know you know--and probably so many of us know--that a good day does not mean the horrendous ones aren't still in store. I picture our brains perhaps stirring new neurites, growing new dendrites that in their frailty are easily wiped out by the pathologies of w/d. Even after all this time, I feel confident that you will pull out of its most devastating symptoms. (My confidence for you shines a faint light on hopes for my own recovery.) I can't report that I feel fully accepting of what these drugs have done to me. The shock reverberates everyday. I can hardly send you--and everyone suffering from psychotropic drugs--enough well wishes. Arbor💜 3 Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
Moderator Emeritus arbor Posted February 6 Author Moderator Emeritus Share Posted February 6 Dear @Oaktree1 I so appreciate your messages. 7 hours ago, Oaktree1 said: My cognitive functions are not the best - I feel the same way times a million. But no, nothing you wrote struck me as impertinent. I'm always grateful to hear from you.🌻 22 hours ago, Oaktree1 said: I was beginning to doubt given the long lasting debilitating symptoms you had that you would you write something like this - that is great news. I'm onery. As I write it I'm willing to think it can be a helpful flaw. I'm glad for you that you're steadily getting off the drugs. Some of my older friends who are long term users of them are now having serious problems--face-plant falls, crippling arthritis, dementia and what have you. Big hugs, Oaktree🕊️ Arbor 1 Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
Moderator Emeritus getofflex Posted February 6 Moderator Emeritus Share Posted February 6 On 2/4/2024 at 2:40 PM, arbor said: Anyway, back to the good news: I believe the iron supplements I'm now taking have helped. I'm much better. And this seems to me, at 5 years and 6 weeks, a miracle, golden, but delicate. (I still feel phobic about meeting with doctors.) This is great news! I'm so glad you are doing better Arbor! 1 Please do not private message me. Only tag me for urgent questions about tapering and reinstating - thank you. ***Please note this is not medical advice. Discuss any decisions about your medical care with a doctor who understands psych meds and how to withdraw from them, if you can find one. Lexapro Started Apr 15 2010 - 10 mg; started taper August 2017, recent taper info: Apr 2 '20 0.18 mg; Jul 16 0.17 mg, Aug 23 0.16 mg, Oct 7 0.15 mg, Nov 8 - 0.14, Jan 16 '21 - 0.13, Feb 7 - 0.12, Feb 22 - 0.11, Mar 26 - 0.10, May 21 - 0.09, June 15 - 0.08 Aug 16 - 0.07, Oct 6 - 0.06, Nov 21 0.05, Dec. 17 0.04, Jan 14 '22 0.03, Feb 19 0.02, Apr 18 0.01, May 15 0.005, Jul 8, 0.00. Psych Drug Free as of July 8, 2022!! Woohoo!!! other meds: Levothyroxine 75 mg magnesium in small amounts at 4 AM, before bed suppl AM: fish oil, flax oil, vit C, vit E, multivitamin, zinc suppl 8 PM: magnesium 350 mg, extended release vitamin C, melatonin 2 mg Paxil 2002 - 2010, switched to Lexapro 2010 Trazodone 50 mg. 2002 - 2019, fast tapered in 2019 Xanax 0.5 mg as needed 2002 - 2019, up to 3x weekly Link to comment
BrokenWings Posted February 6 Share Posted February 6 @arbor 2 hours ago, arbor said: We have followed a similar course in many ways and your comradery has been so helpful for me. I feel the same way and I am grateful for your support. 2 hours ago, arbor said: Since we were both on sertraline for such a long time, our similar trajectory reinforces various patterns in its w/d. I know you know--and probably so many of us know--that a good day does not mean the horrendous ones aren't still in store. I picture our brains perhaps stirring new neurites, growing new dendrites that in their frailty are easily wiped out by the pathologies of w/d. Even after all this time, I feel confident that you will pull out of its most devastating symptoms. (My confidence for you shines a faint light on hopes for my own recovery.) I can't report that I feel fully accepting of what these drugs have done to me. The shock reverberates everyday. It certainly has been helpful to compare both of our timelines. At times, It has reassured me that I am not the only one experiencing the symptoms we both are enduring. I am also confident that you too will be able to recover from this ordeal. I believe all of us will have to cope with residual trauma from the whole withdrawal experience. I wish you all the best and hope you continue to recover. 💙 1 BrokenWings: Introduction Zoloft (Sertraline) 50 mg to 150 mg Start Date: 2/1/2000 End Date: 1/26/2018 Quit cold turkey, Quit multiple times using recommended tapering from a psychiatrist over 2 weeks, Quit using rapid taper over about 1 year 150mg to 100mg to 75mg to 50 mg to 25 mg to 12.5 mg to 0mg. Klonopin (Clonazepam) 0.5 mg as needed Start Date: 2/1/2000 End Date: 3/1/2000 Quit cold turkey after one month. Link to comment
Moderator Emeritus arbor Posted February 7 Author Moderator Emeritus Share Posted February 7 Thank you @getofflex I hope you are also continuing to improve.🌞 Arbor 1 Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
Moderator Emeritus getofflex Posted February 26 Moderator Emeritus Share Posted February 26 On 2/6/2024 at 3:50 PM, getofflex said: I still feel phobic about meeting with doctors. I feel the same way! I'm seeing mine this morning for a yearly checkup. It's no wonder, after the serious harms that have come from their hands. 1 Please do not private message me. Only tag me for urgent questions about tapering and reinstating - thank you. ***Please note this is not medical advice. Discuss any decisions about your medical care with a doctor who understands psych meds and how to withdraw from them, if you can find one. Lexapro Started Apr 15 2010 - 10 mg; started taper August 2017, recent taper info: Apr 2 '20 0.18 mg; Jul 16 0.17 mg, Aug 23 0.16 mg, Oct 7 0.15 mg, Nov 8 - 0.14, Jan 16 '21 - 0.13, Feb 7 - 0.12, Feb 22 - 0.11, Mar 26 - 0.10, May 21 - 0.09, June 15 - 0.08 Aug 16 - 0.07, Oct 6 - 0.06, Nov 21 0.05, Dec. 17 0.04, Jan 14 '22 0.03, Feb 19 0.02, Apr 18 0.01, May 15 0.005, Jul 8, 0.00. Psych Drug Free as of July 8, 2022!! Woohoo!!! other meds: Levothyroxine 75 mg magnesium in small amounts at 4 AM, before bed suppl AM: fish oil, flax oil, vit C, vit E, multivitamin, zinc suppl 8 PM: magnesium 350 mg, extended release vitamin C, melatonin 2 mg Paxil 2002 - 2010, switched to Lexapro 2010 Trazodone 50 mg. 2002 - 2019, fast tapered in 2019 Xanax 0.5 mg as needed 2002 - 2019, up to 3x weekly Link to comment
Moderator Emeritus arbor Posted February 26 Author Moderator Emeritus Share Posted February 26 I'm sending supportive wishes your way! Arbor💜 1 Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
Moderator DataGuy Posted March 12 Moderator Share Posted March 12 Was glad to read your update @arbor. Always great to hear about those healing milestones. Hope you continue to feel better and mood continues its upward trajectory : ) 1 Remeron - 2004-2005 (bad withdrawal) Clonazepam - 2005-2018 (jumped around March) Olanzapine - 2014- late 2017 Domperidone - 2008-2018 Many drugs in between including Lexapro, other benzos and z-drugs. Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. Link to comment
Moderator Emeritus arbor Posted March 12 Author Moderator Emeritus Share Posted March 12 Thank you @DataGuy for stopping by! You have been on my mind recently. Seeing your name always improves symptoms for me and I hope that you're well--and that you are getting some sleep. This month I'll be seeing the oncologist for Mgus, the condition I've been diagnosed with in the wake of AD use/and w/d. Since there's an overlap in some symptoms, I'm wondering this far out from CT, what is Mgus, and what is w/d. I don't expect answers. I just hope Mgus isn't increasing and w/d is healing. Three things I continue to be habitual about are walking, sleeping--even if sometimes it's only rest, and stepping back from thinking patterns that are too riling. I believe I can do this last one better. The site has so many good suggestions. I take comfort in feeling this progress. Best wishes to you DataGuy⚾ Arbor 2 Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
Moderator DataGuy Posted March 13 Moderator Share Posted March 13 Sorry to hear about the diagnosis of Mgus, @arbor. Hope you have a good outcome 🙏. Whatever the treatment recommendation is, we can always look it up to make sure it will leave you better off (Peter Gotzsche has an entire book on how to do this). May have to give our old friend Vinay Prasad a call, too : ) Glad you are keeping up the healthy habits : ). And yes, I am enjoying the Spring Training, which has a surprising amount of intrigue this year. Can't wait for the season to start ⚾ 1 Remeron - 2004-2005 (bad withdrawal) Clonazepam - 2005-2018 (jumped around March) Olanzapine - 2014- late 2017 Domperidone - 2008-2018 Many drugs in between including Lexapro, other benzos and z-drugs. Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. Link to comment
Moderator Emeritus arbor Posted March 14 Author Moderator Emeritus Share Posted March 14 These are great ideas @DataGuy Thank you! The oncologist I'll be seeing is in the same dept that Vinay Prasad used to be. Also researchers in other countries are exploring ways that certain nutritional approaches may help in keeping Mgus from developing into anything worse. Happy Spring Season!⚾ 1 Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
BooBoo19 Posted April 1 Share Posted April 1 Hello Arbor, as somebody else in a protracted withdrawal from a CT and a recent diagnosis of MGUS, how did you get on last Month with your oncologist, any tips or recommendations would be helpful. My Specialist can only advise to use Turmeric. Started venlafaxine December 2016. Started to wean off Effexor over 16 months period and I had no issues at all. Stopped June 2020. Unfortunately, I was under chronic stress from 4 deaths (1 was my mother) in the family amongst other things and sunk back down in October 2020. Rather than accepting this was chronic stress and grief, I panicked and went to the GP. October 2020 prescribed Vortioxetine 10mg for 1 month and then increased to 15 mg ups advice from GP on for 7 weeks in total. Had suicidal thoughts and off the wall anxiety. Changed to Lexapro in mid December 2020, slow titration from 2.5mg up to 10mg. After 7 weeks again off the wall anxiety. I was advised to take 5mg for one week and stop as I want to go 'au natural'. Last SSRI was 30 January 2021. I was also prescribed diazepam and Zopiclone through the 4 months of taking SSRis to 'manage' the side effects and also for the withdrawal. I am probably withdrawing from all drugs. Link to comment
Moderator Emeritus arbor Posted April 1 Author Moderator Emeritus Share Posted April 1 Dear @BooBoo19 I appreciate your asking, though regret that you've also been diagnosed. This oncologist is the best of my current doctors. He's old school in that he sits far away from the computer and focuses on listening, ready to answer what he can. As there's not a lot of research, answers are limited. He's interested in looking out for other AD users, but like the other doctors I've seen, is less interested in causes and more in treatments. When I accidentally used the word, client, instead of patient, he agreed and laughed. The blood tests showed that I'm holding--so that's good news. He doesn't make any recommendations although he seems to know that a good diet makes a difference. He fascilitated some odd blood tests that I wanted. For instance VEGF levels (which Dr. D. Healy talks about) are often associated with neuropathy which itself can be listed as a symptom of MGUS as well as AD w/d. I have it in my left foot and right thigh. He could shed no light on whether mine is related to w/d or MGUS. Same with my persistent iron deciency which still hasn't resolved with supplements. (I'm afraid of getting another infusion as it can deplete phosphorous and I'm already low.) So now I'm taking even more iron bisglycinate which is not easy on the gut--and the thought of taking it from here on out is dismal. The main thing however, is that the MGUS is holding, and I am grateful. My VEGF, B12, lead levels were normal. The test for Sjogren's showed negative. Good things. 11 hours ago, BooBoo19 said: My Specialist can only advise to use Turmeric. Thank you for this. I do take it. As for other dietary ideas, good studies are coming from Brazil, Iceland, and Spain--among other countries. Especially their focus on lipids is useful. Since MGUS has to do with the bone marrow, I imagine the lipids we eat are important. This site already recommends fish oil and there are other lipids and anti-oxidents these studies are working with. I'll try to find the podcasts and studies to share with you. Meanwhile, how are you doing? 1 Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
Moderator Onmyway Posted April 1 Moderator Share Posted April 1 1 hour ago, arbor said: Dear @BooBoo19 I appreciate your asking, though regret that you've also been diagnosed. This oncologist is the best of my current doctors. He's old school in that he sits far away from the computer and focuses on listening, ready to answer what he can. As there's not a lot of research, answers are limited. He's interested in looking out for other AD users, but like the other doctors I've seen, is less interested in causes and more in treatments. When I accidentally used the word, client, instead of patient, he agreed and laughed. The blood tests showed that I'm holding--so that's good news. He doesn't make any recommendations although he seems to know that a good diet makes a difference. He fascilitated some odd blood tests that I wanted. For instance VEGF levels (which Dr. D. Healy talks about) are often associated with neuropathy which itself can be listed as a symptom of MGUS as well as AD w/d. I have it in my left foot and right thigh. He could shed no light on whether mine is related to w/d or MGUS. Same with my persistent iron deciency which still hasn't resolved with supplements. (I'm afraid of getting another infusion as it can deplete phosphorous and I'm already low.) So now I'm taking even more iron bisglycinate which is not easy on the gut--and the thought of taking it from here on out is dismal. The main thing however, is that the MGUS is holding, and I am grateful. My VEGF, B12, lead levels were normal. The test for Sjogren's showed negative. Good things. Thank you for this. I do take it. As for other dietary ideas, good studies are coming from Brazil, Iceland, and Spain--among other countries. Especially their focus on lipids is useful. Since MGUS has to do with the bone marrow, I imagine the lipids we eat are important. This site already recommends fish oil and there are other lipids and anti-oxidents these studies are working with. I'll try to find the podcasts and studies to share with you. Meanwhile, how are you doing? So sorry you are dealing with so many health issues @arbor. Wouldn't it be amazing if life gave us a break once in a while? I am glad you found a doctor who is listening to you. I am thinking of you. OMW PS. Regarding turmeric, a lot of it is contaminated (deliberately for color and weight) by lead - if your blood levels are good then that should be ok but you may want to look for ones that are tested and lead-free "Nothing so small as a moment is insurmountable, and moments are all that we have. You have survived every trial and tribulation that life has thrown at you up until this very instant. When future troubles come—and they will come—a version of you will be born into that moment that can conquer them, too." - Kevin Koenig I am not a doctor and this should not be considered medical advice. You can use the information and recommendations provided in whatever way you want and all decisions on your treatment are yours. In the next few weeks I do not have a lot of capacity to respond to questions. If you need a quick answer pls tag or ask other moderators who may want to be tagged. Aug 2000 - July 2003 (ct, 4-6 wk wd) , citalopram 20 mg, xanax prn, wellbutrin for a few months, trazodone prn Dec 2004 - July 2018 citalopram 20 mg, xanax prn (rarely used) Aug 2018 - citalopram 40 mg (self titrated up) September 2018 - January 2019 tapered citalopram - 40/30/20/10/5 no issues until a week after reaching 0 Feb 2019 0.25 xanax - 0.5/day (3 weeks) over to klonopin 0.25 once a day to manage severe wd March 6, reinstated citalopram 2.5 mg (liquid), klonopin 0.25 mg for sleep 2-3 times a week Apr 1st citalopram 2.0 mg (liquid), klonopin 0.25 once a week (off by 4/14/19- no tapering) citalopram (liquid) 4/14/19 -1.8 mg, 5/8/19 - 1.6 mg, 7/27/19 -1.5 mg, 8/15/19 - 1.35, 2/21/21 - 1.1 (smaller drops in between), 6/20/21 - 1.03 mg, 8/7/21- 1.025, 8/11/21 - 1.02, 8/15/21 - 1.015, 9/3/21 - 0.925 (fingers crossed!), 10/8/21 - 0.9, 10/18/21 - 0.875, 12/31/21 - 0.85, 1/7/22 - 0.825, 1/14/22 - 0.8, 1/22/22 - 0.785, 8/18/22 - 0.59, 12/15/2022 - 0.48, 2/15/22 - 0.43, 25/07/23 - 0.25 (mistake), 6/08/23 - 0.33mg Supplements: magnesium citrate and bi-glycinate Link to comment
Moderator Emeritus arbor Posted April 2 Author Moderator Emeritus Share Posted April 2 Thank you @Onmyway.I appreciate you stopping by. Best wishes to you💜 Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
Moderator Emeritus arbor Posted April 3 Author Moderator Emeritus Share Posted April 3 Dear @BooBoo19 Sorry it's taking me awhile to retrace the info on MGUS diet that I've been gathering. Here's a couple of podcasts, a site and a study. If there's anything I can share with you, please let me know. Much of this seems to be a lot about eating healthfully, a lot of nuts, for instance, avoiding stress, maintaining a healthy gut. Withdrawal, of course, is hardly avoiding stress 😞 but we're doing what we can. I can also start a more in depth separate topic on MGUS that could include what is out there on its association with being on specific AD's, or with cross similarities between MGUS and w/d. Sending best wishes, Arbor 1)Best Food for MGUS to Prevent Multiple Myeloma NutritionFacts.org https://nutritionfacts.org › NutritionFacts.org Blog Studying The Relationship between Myeloma Progression ... 2)YouTube·HealthTree Foundation for Multiple Myeloma·Jan 27, 2022 3)Diets for MGUS, Smoldering Myeloma, and Multiple Myeloma Memorial Sloan Kettering Cancer Center https://www.mskcc.org › Newsroom › In the News Jun 27, 2023 — Learn how eating a plant-based diet may prevent MGUS and smoldering myeloma from developing into multiple myeloma, according to MSK ... 4)Metabolomic and Lipidomic Profiling of Bone Marrow ... - NCBI differences were noted in the amino acid profiles such as decreased branch chain amino acids (BCAAs) and increased catabolism of tryptophan to the active kynurenine metabolite 3-hydroxy-kynurenine between patients with MGUS and MM. A decrease in the total levels of complex lipids such as phosphatidylethanolamines (PE), lactosylceramides (LCER) and phosphatidylinositols (PI) were also detected in the BM plasma samples from MM cf to MGUS patients. Thus, metabolite and complex lipid profiling of the BM plasma identifies differences in levels of metabolites and lipids between patients with MGUS and MM. Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
BooBoo19 Posted April 18 Share Posted April 18 Thank you Arbor, this is so very kind of you. Glad to see you are having some good days x 1 Started venlafaxine December 2016. Started to wean off Effexor over 16 months period and I had no issues at all. Stopped June 2020. Unfortunately, I was under chronic stress from 4 deaths (1 was my mother) in the family amongst other things and sunk back down in October 2020. Rather than accepting this was chronic stress and grief, I panicked and went to the GP. October 2020 prescribed Vortioxetine 10mg for 1 month and then increased to 15 mg ups advice from GP on for 7 weeks in total. Had suicidal thoughts and off the wall anxiety. Changed to Lexapro in mid December 2020, slow titration from 2.5mg up to 10mg. After 7 weeks again off the wall anxiety. I was advised to take 5mg for one week and stop as I want to go 'au natural'. Last SSRI was 30 January 2021. I was also prescribed diazepam and Zopiclone through the 4 months of taking SSRis to 'manage' the side effects and also for the withdrawal. I am probably withdrawing from all drugs. Link to comment
Moderator Emeritus arbor Posted April 21 Author Moderator Emeritus Share Posted April 21 Posted 23 hours ago · IP Thinking of you @arbor, sending love and gratitude and healing vibes your way I have been practicing reading fiction after many years of being unable to do so. It takes some concerted effort and while I do feel rusty, I've also had some moments of genuine pleasure. I very much enjoyed the novel "The Friend" by Sigrid Nunez. I'm also trying to engage more frequently with poetry. I find a good poem can remember me to such a peaceful place within, and connect me with nourishing silence and wholeness. Have you read anything good lately? Wishing you well, in solidarity and support, A. Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
Moderator Emeritus arbor Posted April 21 Author Moderator Emeritus Share Posted April 21 Hi dear @Ariel--I've tried to move your post to my thread--unsuccessfully--but with gratitude. I'll respond from here so I don't take up space on Broken Wings' thread. It sounds as if you are doing better, able to read again and connect with poetry and its "nourishing silence and wholeness." I'm very happy to read this, and think of your healing. Thank you for the mention of Nunez's, "The Friend." I'll put it on my list. Though I still have to work with a good deal of impatience and difficulty concentrating, I'm able to read novels now. I just finished Shirley Hazzard's, "Transit of Venus" whose humor and insights into character overruled my lingering restlessness for sure. It was a great respite. Today I've had sleep, so I feel optimistic and closer on the path to nearly normal. My very best to you with your recovery, Fellow Traveller.💜Arbor 1 Zoloft: 1995 - 2015 Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on December 15, 2018 Gabapentin: 2016 to 2019 (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019 Enalapril: 2010 - 2019 Lipitor: 2017 -2017 Metformin: 2000 - 2020 Liothyronine: 2007 - 2019 Levothyroxine: 2000 - 2022 Link to comment
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