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to jump? to hold? how do you decide? fast or slow taper? what is your story?


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Have been slowly tapering off Klonopin with an eventual cross over to Valium which took a lot longer to stabilise than I thought. I am also on opiates from a back surgery although at a significantly lower dose than I was on. The Dr advised me to get off of benzos soon as possible as it has a toxic and synergistic interaction with pain  meds which I still need to some extent. BOTTOM LINE: after taking seemingly months to go from 8 mg of Valium to 5 mg I decided to speed it up and just go for it-- 1 mg a week. This week I felt sick, had one super bad day where I thought I couldn't continue, also have trouble sleeping but want to move forward with my plan to be off this in about 4 weeks. I was at 5 mg., dropped to 4 mg last Sunday and want to drop to 3 mg tonight. I would LOVE to hear from people who did this end process fairly successfully or for those who really had their struggles. I am not struggling with  the cravings of addiction but obviously am physically dependent.  I mean technically of course I am addicted but luckily the stuff just makes me feel terrible and I can't wait to be done. ANY THOUGHTS!? FYI-- my slow tapers were hellish and I felt sick throughout. PLEASE write to me!! and thank you.
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I have struggled so long with these drugs and finally found the courage to join this group. I reach out fairly often hoping to hear about people's experiences as they relate to my own but I don't seem to get many replies.... any idea why/why not? Maybe people are too sick to reply or maybe I am not clearly stating the distress I am in but I do need support and encouragement from people. I have luckily received some great advice but was hoping to hear from more people! Please take a minute to write me and tell me about the end of taper and the agonizing decision-- to jump? to hold? what? What did you go through and where are you now?
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I have struggled so long with these drugs and finally found the courage to join this group. I reach out fairly often hoping to hear about people's experiences as they relate to my own but I don't seem to get many replies.... any idea why/why not? Maybe people are too sick to reply or maybe I am not clearly stating the distress I am in but I do need support and encouragement from people. I have luckily received some great advice but was hoping to hear from more people! Please take a minute to write me and tell me about the end of taper and the agonizing decision-- to jump? to hold? what? What did you go through and where are you now?

 

Hi, chrysanthemum, I was just getting ready to reply to your first post here, and then saw your second.

 

Many people say it gets harder the further down you go. Tapering 1mg a week when you are at 5mg would be a 20% drop the first week, a 25% drop the second, a 33% drop the third and so on. It you drop by mg instead of by percentage it does get harder, because your body and brain need time to adjust.

 

I know it's been a long time, but if it were me I would thing about doing a water titration. Have you gone to the titration section?

 

Here is the link:

 

http://www.benzobuddies.org/forum/index.php?board=62.0

 

If you titrate you can do a daily reduction and that might not be as hard on you.  That's what I would think about doing, in fact that's what I'm getting ready to do. I'm tapering Xanax and am getting low enough to do a water titration.

 

We're here for you, to support you through this. Sometimes if you want a response right away you can ask in the shout box if someone can look at your thread. What do you think about titrating?

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I have struggled so long with these drugs and finally found the courage to join this group. I reach out fairly often hoping to hear about people's experiences as they relate to my own but I don't seem to get many replies.... any idea why/why not? Maybe people are too sick to reply or maybe I am not clearly stating the distress I am in but I do need support and encouragement from people. I have luckily received some great advice but was hoping to hear from more people! Please take a minute to write me and tell me about the end of taper and the agonizing decision-- to jump? to hold? what? What did you go through and where are you now?

 

Hi, chrysanthemum, I was just getting ready to reply to your first post here, and then saw your second.

 

Many people say it gets harder the further down you go. Tapering 1mg a week when you are at 5mg would be a 20% drop the first week, a 25% drop the second, a 33% drop the third and so on. It you drop by mg instead of by percentage it does get harder, because your body and brain need time to adjust.

 

I know it's been a long time, but if it were me I would thing about doing a water titration. Have you gone to the titration section?

 

Here is the link:

 

http://www.benzobuddies.org/forum/index.php?board=62.0

 

If you titrate you can do a daily reduction and that might not be as hard on you.  That's what I would think about doing, in fact that's what I'm getting ready to do. I'm tapering Xanax and am getting low enough to do a water titration.

 

We're here for you, to support you through this. Sometimes if you want a response right away you can ask in the shout box if someone can look at your thread. What do you think about titrating?

THANK YOU for your thoughts. I think it is interesting what you said about percentages-- it is a very valid point for sure. I had read about titration and thought about it a few weeks ago. Would it be the same time frame? The problem I have that might be different than for some is that I am inadvertently on an opiate/benzo combination due to the fact that I was on Klonopin for 10 years when I had a very severe spinal injury and then was put on painkillers. As I recovered slowly I was SOOOOO sick and someone finally was like OMG that is a toxic combination and you need to get off the benzo ASAP. The combination causes depression, sleep apnea and severe fatigue so you can see why I would be motivated to get off. I think the pay off for me might be better bc I will no longer be mixing drugs that make me sick. With that said, of course I want an easier way to get off the Valium. I read the ashton thing, talked to my dr and we made the switch that day. Unfortunately the switch over dose that we thought was equivalent to 5 mg of Valium turned out to be incorrect for me (I was at about .375 of Klonopin) and I was almost incoherent for a day or two until finally I upped it to 8 mg and went from there. BECAUSE I am sick due to withdrawal AND sick because of the combination I am in a tight spot. If I titrate would I just do a little drop less every day? I think I actually did better with the 1 mg withdrawal in a week than I did with the .5 mg every three weeks.... That is why I finally was like I am just going to go for it. But then I read people's stories about brain healing etc. and started to doubt. I am rambling here but If I can tolerate the 1 mg this time and hold til I do it again maybe the fact that I am no longer poisoning my body with 2 drugs that shouldn't he combined will outweigh the withdrawal factor. And this is embarrassing but I feel like I won't be able to figure out the titration even with the directions. (My son liked the idea of doing it though haha! so I know I could do it if I had to) Do you know an approximate time frame for 3 mg of Valium? If I knew then what I knew now! YIKES! I didn't even have an anxiety disorder and was put on this medication. It is shocking to see the real struggles of people on this forum and I wish you every bit of success in your journey. I look forward to your thoughts! :)
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Hi chrysanthemum,

 

The important thing to do is be flexible with your taper whether it's taking the pills or doing a titration. Either way you are ingesting less and less of the benzo.

 

I'm sorry you had such a hard time with multiple drugs and your cross-over wasn't the right equivalency. I understand what the doctor is saying about a synergistic effect. You've been on both the opiates and benzos for some time, so I would think if it takes a little longer to do a slower taper it should not have a huge affect. On the other hand, if you felt better doing the 1mg cut in a week than doing the .5mg cut in 3 weeks that might work for you.

 

It's important to listen to your body as you do your taper, that's why it's good to be flexible. If it were me I would think about doing the titration if your son is willing to help with it and of course, check with your doctor about this. I don't know if the titration would be longer or not. It seems like you will have to weigh out whether you will get off the benzo faster and possibly have a hard time doing that and have withdrawal affects after or doing a slower taper and take a little longer. Sometimes we don't know, that's why if it were me, I would listen to my body and listen to what it was telling me.

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Hi chrysanthemum,

 

The important thing to do is be flexible with your taper whether it's taking the pills or doing a titration. Either way you are ingesting less and less of the benzo.

 

I'm sorry you had such a hard time with multiple drugs and your cross-over wasn't the right equivalency. I understand what the doctor is saying about a synergistic effect. You've been on both the opiates and benzos for some time, so I would think if it takes a little longer to do a slower taper it should not have a huge affect. On the other hand, if you felt better doing the 1mg cut in a week than doing the .5mg cut in 3 weeks that might work for you.

 

It's important to listen to your body as you do your taper, that's why it's good to be flexible. If it were me I would think about doing the titration if your son is willing to help with it and of course, check with your doctor about this. I don't know if the titration would be longer or not. It seems like you will have to weigh out whether you will get off the benzo faster and possibly have a hard time doing that and have withdrawal affects after or doing a slower taper and take a little longer. Sometimes we don't know, that's why if it were me, I would listen to my body and listen to what it was telling me.

I have been doing this alone for a long time. I actually was on 2 mg of Klonopin and roughly 80 mg of opana plus baclofen. I am off baclofen. At 20 mg. of opana. And from 2 mg of Klonopin I am at 3 mg of valium. In some ways I have done a very slow taper with LOTS of breaks in between -- this has been a two year process! so I guess I am just wanting to get it the hell over with. I I took some time off from the whole thing in the summer just to rest my brain and make my back stronger. I think it IS important to listen to your body --the success I have had thus far was me brainstorming weekly with a nurse practitioner and we figured it out together based on my symptoms. I am struck by the power of these drugs and feel such compassion for all of us who one way or the other ended up on this road. What I learned the most was that everyone else was having a lot of trouble with the last bit of their dose. I literally got stuck on the klonopin wafers-- I was at .375 and couldn't get to .25. I wish I would have done titration then! I know something that made my road a lot easier was giving up caffeine. I read a lot how it causes mini-withdrawal a few hours after taking it and since I stopped my days have been much smoother. I am just in the moment and for now I am at 3 mg of Valium-- dropped last night from 4. I will reevaluate at the end of the week. One thing I was really curious about. It seems in the Ashton program she basically was like once you do the crossover to Valium you can go down 1 mg weekly until the last five mg and then you can do it every one or two weeks.Now it seems like many people  encourage a much longer end process? What's up with that?! ???
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Hi chrysanthemum,

 

I believe Dr. Ashton's manual is meant to be a suggested guideline. The tables in the Ashton Manual for coming off of diazepam (Valium) at 1mg every one to two weeks are tolerable for some people. I've heard of people coming off of a higher potency benzo fast too without experiencing too much discomfort.

 

It's different for everyone, perhaps some people are just more sensitive to adjusting, but many members have had success either way. That's great that you are going to reevaluate at the end of the week.

 

When I gave up caffeine my symptoms got better too.  :thumbsup:

 

Let us know how you're doing, we're here for you.  :)

 

 

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Hi chrysanthemum,

 

I believe Dr. Ashton's manual is meant to be a suggested guideline. The tables in the Ashton Manual for coming off of diazepam (Valium) at 1mg every one to two weeks are tolerable for some people. I've heard of people coming off of a higher potency benzo fast too without experiencing too much discomfort.

 

It's different for everyone, perhaps some people are just more sensitive to adjusting, but many members have had success either way. That's great that you are going to reevaluate at the end of the week.

 

When I gave up caffeine my symptoms got better too.  :thumbsup:

 

Let us know how you're doing, we're here for you.  :)

 

 

thank you so much! Glad to hear that the caffeine thing helped you too. It really helped me by like 60%! I guess we just each have our own journey through this and I am grateful to be be traveling the last leg of mine here among my BB!  :crazy:
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You expressed that well chrysanthemum, it's an individual journey, but it really is nice to share it with other BB's and get feedback. I'm glad about that too! :crazy:
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Hi Chrysanthemum, I was on very high doses of benzos and opiates at one time. I made the huge mistake of going to hospital and detoxing. I was ctd off everything all at once and given only 3 days of helper meds that included suboxone and antiseizure meds. Im glad that you did not go this route. Its been very, very tough for me. I would encourage you to keep tapering. Ive read where so many people get fed up tapering and just jump off because they think things cant get any worse, and they usually do get worse from what Ive read if they go to fast or get off too soon. Try and be patient and go as slow as you need to. :) Colleen
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Hi Chrysanthemum, I was on very high doses of benzos and opiates at one time. I made the huge mistake of going to hospital and detoxing. I was ctd off everything all at once and given only 3 days of helper meds that included suboxone and antiseizure meds. Im glad that you did not go this route. Its been very, very tough for me. I would encourage you to keep tapering. Ive read where so many people get fed up tapering and just jump off because they think things cant get any worse, and they usually do get worse from what Ive read if they go to fast or get off too soon. Try and be patient and go as slow as you need to. :) Colleen

HOLY SH**! I cannot imagine the suffering you are experiencing. I could not have done it. I think of how difficult this path has been and I am amazed you are able to type those words. For right now I am getting off the benzo only and I will then hold for a few months. The pain Dr. thinks I will always need some element of pain meds although I hope to reduce my dose SLOOOOOWLY. I am still recovering from a fairly extensive spinal surgery so the pain meds I am not as concerned with-- I did already reduce the opana by 65% or so so I am well pleased with that. The combination of them made is what made me feel so sick. I send you many blessings for some moments of peace and I hope that you heal quickly! Wow. How are you feeling now?
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Dear Chrysanthemum,

I'm so sorry you didn't get a lot of replies in your previous posts. I know that sometimes what stops me is not feeling qualified to answer in many cases. But I also know how critical it is for support - for validation - as we take this awful journey back to who we were before benzos.  I did want to mention that I tapered way too fast, although it was what was medically recommended. Biggest mistake of my life - and I suffered - but the worst time was a few months out  - that is when things got bad. But I didn't know it was not an issue with the drug being out of my system - it was - it was that my receptors needed to heal. I found that truth in a book I read, called Worse Than Heroin. That lead me to this site. Then I read another book called Benzo -Wise. The combination of those things helped me to know what was wrong and what I needed to do to heal.  One of the most important things afer going through that awful experience was to go as slow as I need to. And sometimes, I hold a dose for four weeks, and sometimes it is as little as 1% of a reduction. But I really really believe it has minimized my symptoms (don't get me wrong, still some very rough days). Even if it takes me another year to get off this last little bit, I will take that long because my brain needs to heal and I need to feel comfortable with every reduction and every step I take before doing it. I hope that is helpful. You have obviously been through so much, but I know you will find alot of guidance and hope here.

amb

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Hi Chrysanthemum, Thankyou so much for asking how I am...I am healing slowly, I have nerve pain, balance and coordination issues, mostly physical stuff. Its been tough, but I didnt know any better at the time. Thats great you have decreased your opano dose so much, congrats. I also have back issues, DDD and Facet Arthrosis...I do not know if I will be off opiates forever, but I hope so. I was having problems when I went to detox with the meds like escalating daytime sleep which came on kindof quick..idk what happened but something bad for sure. Im glad you caught it when you did, and someone worked with you to taper. My NP got nervous and referred me out. Good luck and I hope things go smoothly for you. Love, Colleen
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Dear Chrysanthemum,

I'm so sorry you didn't get a lot of replies in your previous posts. I know that sometimes what stops me is not feeling qualified to answer in many cases. But I also know how critical it is for support - for validation - as we take this awful journey back to who we were before benzos.  I did want to mention that I tapered way too fast, although it was what was medically recommended. Biggest mistake of my life - and I suffered - but the worst time was a few months out  - that is when things got bad. But I didn't know it was not an issue with the drug being out of my system - it was - it was that my receptors needed to heal. I found that truth in a book I read, called Worse Than Heroin. That lead me to this site. Then I read another book called Benzo -Wise. The combination of those things helped me to know what was wrong and what I needed to do to heal.  One of the most important things after going through that awful experience was to go as slow as I need to. And sometimes, I hold a dose for four weeks, and sometimes it is as little as 1% of a reduction. But I really really believe it has minimized my symptoms (don't get me wrong, still some very rough days). Even if it takes me another year to get off this last little bit, I will take that long because my brain needs to heal and I need to feel comfortable with every reduction and every step I take before doing it. I hope that is helpful. You have obviously been through so much, but I know you will find alot of guidance and hope here.

amb

I am going to order the book Worse Than Heroin! I sooo understand what you mean about holding a 1% reduction for a month. It is so crazy to think how such a little dose can be so harmful!! I feel very sick today... but luckily was prepared for it. I don't work due to other health problems and I set up the dinner schedule this week to be easy for me and my kids. (tonight: hamburgers and apples) The thing for me is I have been doing the slowest of tapers for 18 months. I need to go back and look at my notebooks where I kept note of all my dose changes but it has been a long time. I really was feeling awful with the benzo/opiate combination: it had even started to affect my endocrine system. Case in point: I finally got a regular menstrual cycle this week-- for the first time in MONTHS AND MONTHS. Coincidence to my increasing the dose drop? I don't think so. I already had the whole ok if it takes me a year fine thing 18 months ago and when I started looking at another 8 months, I realized that FOR ME, I couldn't do it. The toxicity of the combo was too much. My guess is depending on how the week goes I may hold off and stabilize even for a few weeks while I celebrate my son's 16th birthday and get some driving with him under our belts and then go for it again. I do not want to live in the fear of a dose drop. I can see people who have to get to work would have to do it in the tiniest doses possible-- I could never function at a job while doing this. But I have adopted the thought process of I am already sick anyway (from the combination of opiate/benzo -- really it is deadly!) so at least this is sick with a purpose. Thank you for writing and I wish you a healthy safe healing!
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Hi Chrysanthemum, Thankyou so much for asking how I am...I am healing slowly, I have nerve pain, balance and coordination issues, mostly physical stuff. Its been tough, but I didnt know any better at the time. Thats great you have decreased your opano dose so much, congrats. I also have back issues, DDD and Facet Arthrosis...I do not know if I will be off opiates forever, but I hope so. I was having problems when I went to detox with the meds like escalating daytime sleep which came on kindof quick..idk what happened but something bad for sure. Im glad you caught it when you did, and someone worked with you to taper. My NP got nervous and referred me out. Good luck and I hope things go smoothly for you. Love, Colleen

MY NP is a psychiatric specialty so she is my counselor and she knows drugs. For confidentially sake I will just say that I too have an advanced degree in a similar field so we brainstorm a lot and I see us as partners. I am beyond lucky to have her. When I did the C/O I was on the edge of a nervous breakdown: she was calling me at home on a daily basis and I finally had to up my dose from what we thought would be 5 mg to 8 mg which I found so distressing and defeating but ultimately necessary. My daytime sleepiness was ridiculous-- I couldn't get out of bed with the opiate/benzo combination-- did you know it causes severe sleep apnea? So I wasn't sleeping properly and as soon as my kids left for school I went back to bed til 11 am and was still belong exhausted. That is what keeps me going-- knowing how littel I was functioning then. I can see improvements but it is hard. Very hard. I would try and stay away from the opiates until necessary. I held off for 10 years but I ended up in a wheelchair and had to have surgery. That was brutal. And now 2 years later-- I can walk 2 miles-- slowly, but still. Thank you for writing! Hope you have a peaceful day!
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Thanks for writing. Let me know what you think of the book. Whew! Not easy reading but when you are desperate for truth it is a life saver.  You must have a very supportive doctor since you are able to taper this slowly. Seems the majority of them don't have a clue. I'm very lucky that mine will let me taper at my own pace- thank the Lord. But I wanted to let you know that I'm sorry you aren't feeling well today - I know how we can get days where we are just slammed! So, I'm holding you up in my prayers!

amb

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Thanks for writing. Let me know what you think of the book. Whew! Not easy reading but when you are desperate for truth it is a life saver.  You must have a very supportive doctor since you are able to taper this slowly. Seems the majority of them don't have a clue. I'm very lucky that mine will let me taper at my own pace- thank the Lord. But I wanted to let you know that I'm sorry you aren't feeling well today - I know how we can get days where we are just slammed! So, I'm holding you up in my prayers!

amb

I ordered benzo wise so I'll let you know. As far as a slow taper, my NP actually tries to get me to go slower at times. It helps that I have had a relationship with her for many years and she knows that I am not a drug seeker. I have no desire for the drugs-- just the physical dependency! Which was shocking to me, truly! And my pain Dr knows what a horrific surgery I had and he told me to stop reducing my pain meds. Sometimes I have trouble convincing him to give me a lower dose. It's all a crazy mess :crazy: that's for sure. I am very lucky that I have been able to be in charge ultimately of when to lower and by how much. It helps when you have the control.... But again, these are Dr. who have known me for 10 years and know that I take the drugs as prescribed. My heart truly goes out to people who crave it bc I don't know how they fight that when they know that they would feel better if they just took it. With all my problems I have, luckily that is not one of them! One of my kids is a young adult with a pretty big anxiety disorder. She is supposed to take Ativan as needed for panic. She is of the mind set that if one is good -- ten are better. I was just in the hospital with her last week in the middle of my taper from hell as she had taken a handful of ativan and couldn't stand up. I have all the drugs locked and it is a battle. She is drug seeking now but not addicted. So I see the other side of it and it sucks. I hate it. She had just made a switch from Cymbalta which exhausted her to pristiq which I think was too stimulating for her. I am overwhelmed and tired and for the life of me don't understand why she would want a drug that she can clearly see made me sick as heck. I wasn't even prescribed it for an anxiety disorder and it was out of pure ignorance and muscle pain that I took it. I was once on almost 10 medications for autoimmune arthritis issues and interstitial cystitis. I am off most of all of them now. I would rather learn to manage my symptoms without all this shit they throw at you. I am fine about taking the opana for now-- I hope to be at a lower dose by next summer but I also refuse to live with the severe back pain I was in. Yikes, I am rambling.... Take care, Chrys...mum
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Wow. My heart goes out to your daughter too. Is she open at all to hearing the truth about this stuff? I had my entire family read Benzo wise so they could know what I was going through and know how to support me. Maybe you could approach it that way - have her read it. I also know that we know we have to be ready even to make a cut in dose, so she needs to be ready to want to even stop.  Let me know how that goes. Obviously, you have a fighting spirit so I know you are going to make it after all you have already gone through!

amb

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Wow. My heart goes out to your daughter too. Is she open at all to hearing the truth about this stuff? I had my entire family read Benzo wise so they could know what I was going through and know how to support me. Maybe you could approach it that way - have her read it. I also know that we know we have to be ready even to make a cut in dose, so she needs to be ready to want to even stop.  Let me know how that goes. Obviously, you have a fighting spirit so I know you are going to make it after all you have already gone through!

amb

She has only taken it a handful of times~ and the fact that she LOVES it so much shows me she needs a longer acting medication that addresses her anxiety. She has tried a few but it is time to switch again... I have talked to her at length about it but she doesn't want to hear it. She has an appointment with a counselor tomorrow and will also have a new medication evaluation and that is the best I can do for now. It is just now that I can see how *addicting* it is to people bc that was not my experience at all. So to find out my body was addicted was shocking to me. NEVER AGAIN will I blindly take medication anyway. In that way I think the internet has been a life saver-- to have access to real people's stories is invaluable.
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Hi Chrys,

 

Just wanted to say hello.  I was hoping you would get more replies to your post because I'm interested also.

 

Pacey

Basically I have learned that to each their own! I like hearing other people's stories but as much as we are the same, there are vast differences. I have traveled a VERY LONG road by myself and am going to continue to trust myself. I think I am always looking for someone to say oh, it's not that bad. BUT we all know it sucks and the only way to do it, is to do it. Very zen but very true. There seems to be a paralyzing fear among many and I understand that feeling well. At the end of the day we each make the change when we have the courage to do it. I wish you so much peace as you continue on this path. One day you will be healed and that my friend will be a beautiful thing!  :smitten:
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Day 3 of week 2 of 1 mg weekly jump--  SIMPLE: I feel like shit. No question about it. I dropped from 4 mg to 3 mg on Sunday night (after going down from 5 mg to 4 mg the Sunday prior)  and I have not slept more than 3-4 hours any night since then. I have anxiety. My heart is racing. I am having trouble breathing. I am exhausted. I am depressed. I have the metallic taste in my mouth. I am dizzy. I am constantly thirsty. I am weepy. I can't concentrate. I feel absolutely alarmed by the drastic changes that this makes to my body-- these teeny-tiny doses! Am I sorry I did it? Nope. Once I decide to do it -- it's ballzzz to the wall for me -- no regrets, I'm all in. I am going to hold for two weeks to recover a bit and then I may finish out at .5 mg weekly-- we'll see.... Oh yes! another lovely symptom-- sweating my brains out! I just hope it is the toxins being released from my brain.

 

OH! yes, the lights and the sounds. Even the sound of my typing is excruciating to me. Withdrawal sucks but at least I made the choice to do it-- and that choice, at the end of the day, shows HOPE.

 

Wishing you all peaceful healing. Be in touch.

 

Love, Chrysanthemum :smitten:

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So sorry Chrysanthemum. This is miserable isn't it. It akes determination and obviously, you've got it.  Geez. I can relate with your symptoms. I get this weird one sometimes that my brain feels like it is shifting inside my head-some type of dizziness or something - right out of a horror movie! The hyperacusis - sensitivity to sound! Ouch! That's a bad one. I can't even talk some days because the sound of my own voice vibrates in my head.  But the other one you mention is sweating! Whew! You and me both - menopause was a piece of cake (had it then too) compared to this. Hoping you have a much better day! We will survive this!!!!

amb

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