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mirage

@Rosetta Glad to hear you are doing okay and, even though you have a lot of emotions, you are doing better. Emotionally, i'm doing well. My symptoms are all physical. The past couple of days, I got a new symptom. A very powerful headache. I am trying to beat it with Advil but it isn't working. I have taken 2 and I know I can go up to 4 but i'm hesitant to do that. I also have a script Ibuprofen. But, again, i'm hesitant. I may try an Empson salts bath. Thank  you for recommending that to me. 

 

Yes, it turns out we have quite a few neurologist that also practice psychiatry. That makes a lot of sense, actually. I like him a lot and I have asked many questions. He doesn't really know why some people have problems and some don't. The psychiatrist I am seeing did some genetic testing on me with all of these meds. It turns out I am a slow metabolizer of them and there is just one, that was okay for me to take and that was Prestiq. I decided not to take it. No more meds. She agreed. My psychiatrist and neurologist both agree all of my symptoms are from the ct off of Wellbutrin. Both have said it is extremely rare for this to happen and I believe that to be true. Most people can wean off of them and have no issues.  I have many friends who have taken them and stopped them and had zero complications. I have a friend whose husband did his own ween off of Lexapro. He has been on it for 12 years. He did a wean of, every other day for 2 weeks then every 3 days for 2 weeks and so on. He had no problems at all. No withdrawal. 

 

My neurologist said this will be a long recovery and he can't give me any time frame. He said I will go forward one step then back 5, then forward another step and back 4. Eventually, it will all even out. He called it a rollercoaster, ups and downs. His phrasing for waves and windows. 

 

God bless dear friend

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RusTW
On 7/8/2018 at 5:45 PM, Rosetta said:

HI Mirage.  You should have this on your thread so that you can look back at it later:

 

Mirage's post to Rosetta July 8, 2018:

 

I am for sure having more, long waves and short windows here and there. You are so right when you say you don't notice the windows until after they happen. I never recognize them as windows because I still always have some symptoms. It is when another wave comes that I think, "oh, I had a window". Also, they are very short lived. Maybe just an hour or two here and there. 

 

My worst symptoms are, head and jaw tension/pain, dizziness and anxiety. 

 

I can push through most days. A few month ago, no way. In fact, a few months ago I would not commit to anything. I would tell people I had to play everything day to day and there were many times I had to cancel doing things at the last minute. Now, I can stay committed and plug along. 

 

I agree with what you are saying about pms and hormones. I completed menopause last year. I know that based on blood work that was taken 2 years ago and then again in March of 2017. I could see I was menopausal in 2015 but was still making estrogen. In my March 2017 labs, my numbers for estrogen, progesterone and testosterone were all tanked. Thus, the completion of being a young lady. lol. That is why I stopped my med cold turkey. I was put on it by my obgyn for pms and since I no longer had any, I thought I no longer need the med. She never told me I needed to wean off. I don't blame her. I think the advice she gave me  was based on the knowledge she had. I also think most people don't get this extreme withdrawal. It is the lucky, smaller percent of us that do. I found out, a few months ago, through some genetic testing one of drs did, that I am a very slow metabolizer of these meds. That said, I wonder if there is any connection with that, to those of us who suffer so, compared to others who can successfully come off of them with no problems? 

 

Going back to hormones, I am getting bio-identical hormone replacement through pellets. I have a gyn here that specializes in menopause and she is remarkable! I get them every 3 and a half months and I do think they are helping me with this recovery. At least I am staying balanced with that. 

 

I agree with you on staying hydrated and eating protein. I too, am doing both. I was not a big protein eater prior to this journey. Mostly ate veggies and salads. I never ever ate red meat. Well, that has changed. Each and every day, I do eat the same things. I do a good, healthy protein shake every morning for breakfast, followed by a boiled egg a couple of hours later and for lunch, I do whole, organic, no salt no sugar peanut butter on chia seed bread and a banana and for an afternoon snack, I eat cheese and fresh berries. For dinner, I go with what ever we decide to make or go out and get. I lost a lot of weight during this journey. I was very small to begin with 116lbs. I got down to 104. I could barely sip water. I am back to my normal weight and able to maintain it. Like you, I eat because I know it is important but i'm not there yet on craving anything or loving our long dinners out that we use to have. My family will ask what I feel like eating and there is never anything I particularly want. But, I can eat now. 

 

It is nice that you live by the ocean. How therapeutic. I would love that. I live in a big park so I take my walks there with my dogs. Not quite the same as hearing the beautiful sounds of ocean waves. Speaking of waves, I am have a really rough one right now. Very intense dizziness and jaw/head pressure. It started last Wednesday and other than a few hours on the 4th, it is staying with me. 

Has the hormone therapy helped you.I have low testosterone .I do therapy for it.not sure if the testosterone is helping or agitating w/d.

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RusTW
15 hours ago, mirage said:

@Rosetta Glad to hear you are doing okay and, even though you have a lot of emotions, you are doing better. Emotionally, i'm doing well. My symptoms are all physical. The past couple of days, I got a new symptom. A very powerful headache. I am trying to beat it with Advil but it isn't working. I have taken 2 and I know I can go up to 4 but i'm hesitant to do that. I also have a script Ibuprofen. But, again, i'm hesitant. I may try an Empson salts bath. Thank  you for recommending that to me. 

 

Yes, it turns out we have quite a few neurologist that also practice psychiatry. That makes a lot of sense, actually. I like him a lot and I have asked many questions. He doesn't really know why some people have problems and some don't. The psychiatrist I am seeing did some genetic testing on me with all of these meds. It turns out I am a slow metabolizer of them and there is just one, that was okay for me to take and that was Prestiq. I decided not to take it. No more meds. She agreed. My psychiatrist and neurologist both agree all of my symptoms are from the ct off of Wellbutrin. Both have said it is extremely rare for this to happen and I believe that to be true. Most people can wean off of them and have no issues.  I have many friends who have taken them and stopped them and had zero complications. I have a friend whose husband did his own ween off of Lexapro. He has been on it for 12 years. He did a wean of, every other day for 2 weeks then every 3 days for 2 weeks and so on. He had no problems at all. No withdrawal. 

 

My neurologist said this will be a long recovery and he can't give me any time frame. He said I will go forward one step then back 5, then forward another step and back 4. Eventually, it will all even out. He called it a rollercoaster, ups and downs. His phrasing for waves and windows. 

 

God bless dear friend

I cold turkey then reinstated 3 weeks later.I think I waited too long.I still have the nausea and anxiety .I'm holding my dose at 50 mg seroquel and 50 mg zoloft.had a 8 day window that's gone.my wave symptoms are bad now like it is the beginning

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mirage

@RusTW I think the hormone therapy helps. I am doing bio-identical replacement with pellet therapy. So my body gradually absorbs it as it needs it so I always stay level. In August and November of 2017, my dr raised my levels thinking it would help with the anxiety. In normal circumstances, when the nervous system is balanced, or at homeostasis, more testosterone usually will help with anxiety. However, since my nervous system was so unbalanced, it was too much for me. I then waited for 6 months before I got the next insertion. (They are normally given every 3 to 4  months). I wanted to make sure all of the hormones were all out of my body and we started over with a very low dose. That is where I am now. 

 

Do you get blood work done to monitor the testosterone? I get my progesterone, estrogen and testosterone levels checked about a month before I get the pellets and then again about 3 months after the insertion. That way they can see how much you need and how fast you are absorbing it. 

 

I don't know much about any other hormone replacement. This is the only one I am familiar with. Hope this can help. 

 

Looks like your symptoms came later too. Mine hit me out of no where as well. I was totally well and feeling great. It was Friday, June 2nd 2017. I had an absolutely normal morning. It was around 12 30 in the afternoon and I was in my gym working out. I laid back to bench press and the ceiling started spinning. I thought I was having a stroke! I sat up but could not stop the vertigo. That was the beginning of my journey. From that point on, new symptoms were showing up each and every day. I was SO SICK last summer!!!!! I didn't find out until December that this was withdrawal. My internist kept telling me it was severe anxiety and I was just making it worse and over reacting. I kept asking her how I could go from a, non anxiety person, to, a hyper stimulated person in the middle of one afternoon! Bottom line, she put me back on Wellbutrin at the lower dose of 150. It didn't work for me either. My reinstatement was 6 weeks after my ct. Then she added, Remeron 15mg. Then she raised the Wellbutrin back to 300 and then, again, increased the Remeron to 30mg. My intuition kept telling me this was not normal anxiety and how do you explain all of the other , horrible, awful symptoms that I had as well? I made a decision to stop the meds. They weren't working and, actually, I think making me worse. I weaned off the Remeron completely and then weaned from the 300 Wellbutrin to 150. I am holding at the 150 currently. My neurologist, that finally diagnosed me in December, suggested I hold here until my system gets back to normal and then we will start a new wean. I am in no hurry to do another wean right now. I am focused on getting my system back first and foremost. 

 

You are still in early stages so don't be alarmed. I was pretty sick for the first 6 months and then things eased a bit and I do mean a bit. However, the good news is I have gotten better. Baby steps. Itty bitty baby steps. I can't stress that enough. I have not yet had a window free of symptoms. I'm looking forward to that. 

 

 

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RusTW
1 hour ago, mirage said:

@RusTW I think the hormone therapy helps. I am doing bio-identical replacement with pellet therapy. So my body gradually absorbs it as it needs it so I always stay level. In August and November of 2017, my dr raised my levels thinking it would help with the anxiety. In normal circumstances, when the nervous system is balanced, or at homeostasis, more testosterone usually will help with anxiety. However, since my nervous system was so unbalanced, it was too much for me. I then waited for 6 months before I got the next insertion. (They are normally given every 3 to 4  months). I wanted to make sure all of the hormones were all out of my body and we started over with a very low dose. That is where I am now. 

 

Do you get blood work done to monitor the testosterone? I get my progesterone, estrogen and testosterone levels checked about a month before I get the pellets and then again about 3 months after the insertion. That way they can see how much you need and how fast you are absorbing it. 

 

I don't know much about any other hormone replacement. This is the only one I am familiar with. Hope this can help. 

 

Looks like your symptoms came later too. Mine hit me out of no where as well. I was totally well and feeling great. It was Friday, June 2nd 2017. I had an absolutely normal morning. It was around 12 30 in the afternoon and I was in my gym working out. I laid back to bench press and the ceiling started spinning. I thought I was having a stroke! I sat up but could not stop the vertigo. That was the beginning of my journey. From that point on, new symptoms were showing up each and every day. I was SO SICK last summer!!!!! I didn't find out until December that this was withdrawal. My internist kept telling me it was severe anxiety and I was just making it worse and over reacting. I kept asking her how I could go from a, non anxiety person, to, a hyper stimulated person in the middle of one afternoon! Bottom line, she put me back on Wellbutrin at the lower dose of 150. It didn't work for me either. My reinstatement was 6 weeks after my ct. Then she added, Remeron 15mg. Then she raised the Wellbutrin back to 300 and then, again, increased the Remeron to 30mg. My intuition kept telling me this was not normal anxiety and how do you explain all of the other , horrible, awful symptoms that I had as well? I made a decision to stop the meds. They weren't working and, actually, I think making me worse. I weaned off the Remeron completely and then weaned from the 300 Wellbutrin to 150. I am holding at the 150 currently. My neurologist, that finally diagnosed me in December, suggested I hold here until my system gets back to normal and then we will start a new wean. I am in no hurry to do another wean right now. I am focused on getting my system back first and foremost. 

 

You are still in early stages so don't be alarmed. I was pretty sick for the first 6 months and then things eased a bit and I do mean a bit. However, the good news is I have gotten better. Baby steps. Itty bitty baby steps. I can't stress that enough. I have not yet had a window free of symptoms. I'm looking forward to that. 

 

 

Yes I do have test for my hormone levels .I test low for testosterone so I take shots every 4 days.not sure how it mixes with withdrawal.I do worry its making things worse.I know without it I would probably have depression and anxiety so either way im in a bind.

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RusTW

 do you work and if so how do you work and if so how did you manage during your major symptoms during your withdraw I think that's what brings on most of the exact anxiety for me is that the anticipation of work and then the fear that something's going to go wrong while I'm working

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mirage

@RusTWI do work, part time. I use to work 2, 10 hour days and 1, 6 hour day. During the first several months of this I wasn't able to work. I then went back for a couple of hours at a time. I am now doing 2, 6 hour days and this week I will do a third 6 hour day. This will be my first week doing 3 days. I am fortunate with huge flexibility with work. 

 

It is hard. You have to put on a happy face and fake it till you make it. I understand when you say you are worried about something going wrong while you are at work. I use to feel the same way and I use to worry about the same thing when I went out. However, I had to come to the acceptance that I can't stop anything that comes and while I may be hugely uncomfortable and scared, it is what it is and there is not one thing I can do right now. Everything is time and patience and you cant put yourself in a bubble. I actually think it is better to be out and about. Once you start isolating yourself, the anxiety may get worse. Our systems need to get exposed to get past some of this. Just my thought though. 

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RusTW

 

Thanks for the encouragement.Im glad that you are sharing this with me because some days are so hard.nobody really gets it.my family thinks its all in  my head.its nice to have this site and great people to share and help.you have done ct so it helps to talk because you have progressed i am learning patience in every way.

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mirage

@RusTWThis is a very difficult journey. I refuse to call it anything but that. I am extremely faithful and I lean on God for my strength. Also, I am a smidge stubborn. lol.

 

Our body is no longer in a normal homeostasis. Our nervous system has been turned upside down. All symptoms are real. However, they are not the true us. Therefore, try not to allow your nervous body to fool you into thinking this is the real you. The true person you were will come back. You have to stay strong. Tell yourself you are strong and you will be this. I also journal every night. I write about my day and I write positive things that happened in each day. The fact that we are still here, breathing and able to reach out, ect. It helps keep your mind in an upward spiral instead of down. 

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mirage

 

@RusTWoops, I had a typo in my last post. I mean to say, "tell yourself you are strong and you will beat this". Not you will be this. Sorry about that. I have quite a bit of brain fog. 

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RusTW

i feel lucky right now im in a new short window.no nausea or anxiety.as you said i remind myself im healing.its hard because im on the 50 mg seroquel and 50 mg of zoloft to get off .i know i have to taper patiently but the i think of the crap out after im off.if its bad now how will it be at 0.hope the tapering will ease this a little.do you get better at night.80 % of my windows are 8pm till sleep.then wake up with anxiety that either fades like today or gets worse with the nausea.

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mirage

@RusTWI do usually feel a bit better late night and yes, I wake up every day feeling like i'm starting all over again. It is like the movie Groundhog Day, if you have ever seen it. One of these days, we will wake up refreshed and feeling normal and ready to greet the days fun and challenges. 

 

I also have this other odd thing. My body never feels tired. I feel fatigued and I will yawn and yawn but if I were to lay down, boom, can't sleep. When I get tired, my symptoms get worse. It is like my body has forgotten what it feels like to be sleepy. I have to take melatonin every night and even then, I have many nights I will toss and turn and end up taking a half of a benedryl. I'm looking forward to actually being tired and falling asleep. This, too, was something I had no problems with prior to my journey. I could fall asleep, no problem.

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RusTW

its nice during my windows i appreciate my time.i walk every day at a park lots of animals to distract me or remind me of life struggle.i got bad anxiety the other day when i found a kitten stuck in a tree by my gym.it was so hot.i got the humane society to pick him up.it was sad and a precursor to my next wave.im a libra so i always seek balance.its hard to be gentle to yourself when your out there living while u feel like this 

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mirage

@RusTWI understand the precursor to waves and the, oversensitivity to everything. I am an animal lover and I have 4 dogs and 4 cats. All are rescues so I get the kitten in the tree. I had a very difficult time the first several months with anything sad or scary. I couldn't even watch anything on tv. Again, not the normal me. Ive always had sympathy and empathy but could watch and talk about anything and never had any type of anxiety or over thinking about it. That has gotten better for me. It will for you too. 

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RusTW

i did see groundhog day good example i relate very much.i have this weird thing that i cant take naps ever for over a year since taking ativan.if i try to sleep during the day the anxiety picks up and the nausea then i just toss and turn.i look at everyone and think i bet they take naps.i miss naps for recharging.the sleep thing scares me if i dont sleep at night i trip out because i cant make it up with a nap.while i was on ativan i would jerk as soon as i would fall asleep.i was scared of dying in my sleep.at the time i didnt know what was causing it.had 2 sleep studies done came back normal.then when i tapered the ativan i would seize as i would fall asleep and hit my head on the wall involuntary so hard.that went away. 

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RusTW

can u nap.i really miss that

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mirage

@RusTWno can't nap. I use to be able to fall asleep any time with no problem. If I were a passenger in a car I would fall asleep like a baby. Not any more. My system is just too ramped up.

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RusTW

I see a guy at the park that sits on a bench closes his eyes and sleeps.even the ducks and geese sleep when its hot .i never thought i would miss that.do you think our systems will ever go back to that where we can drift off into a nap during the drive or sleep during the day .i had a lot of health anxiety about dying in my sleep since ativan .had tests for health issues all normal 

 

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mirage

I think all will go back to the way we were before the drugs.

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RusTW

  I was only on them for months.then the change from zyprexa 10 mg to seroquel 200-300 mg no taper.I stopped seroquel after 3 weeks I stopped ct didn't get symptoms until weeks later I realized what I did then.

 

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Rabe

Hi Mirage...that was a interesting what you doctor said...sounds kind.  I think mine has been sort of forced into believing 'we' do actually exist....sorry he and I had to believe it the hard way.  

I am a very rapid metabolizer...just wanted to share.  SO I guess it can be either metabolizer...perhaps more the general sensitivity of our systems?  Idk.

What you said about the windows and waves if so true...not really realizing it until it changes.  Sometimes when I feel better I think it will always be that way...but then it stops and I feel so bad and I think THAT is the way it is always going to be.  Songbird shared that the brain is only in the moment...so whatever is going on at that time is what it thinks to be true...and we have to correct that in essence.  I am seeing that.  

Just thinking about you.  Hope work is going ok.  Take care!💜

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mirage

@RusTW I do think that all of the switching of meds can cause complications just as much as stopping the meds. Bottom line, there are many people they work well for and help and then there are some, they don't. 

 

It is good that you realized what was happening early in your stopping the meds. I had no idea what was going on with me. Like I said, I was perfectly healthy living a wonderful life and in a second on a Friday afternoon, it all went bad. I had every tests ran and bounced from several different doctors and specialists, until, finally, I was able to get into a neurologist who told me what was happening. So, months later, thousands of dollars in medical expenses and so much worry. 

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mirage

@Rabe Hi. Yes, this window and wave thing is hard but it gives us the knowledge that healing is taking place and one day all will be back to normal. 

 

I had my first window that was free of symptoms last night. It was late and lasted about an hour and a half and then I went to bed. I am 13 months into this journey and it was my first real taste of no dizziness! It was wonderful and to not feel dizzy was the BEST feeling! I didn't want to go to bed, but, at the same time, I did because I thought perhaps I'll finally be able to fall asleep and get a good nights rest. I did fall asleep pretty quickly but then woke up around 2:30am and had to take a half of a benedryl to get back to sleep. Woke up this morning to the same yucky symptoms and feeling bad. I wonder why a lot of us seem to feel better in the evenings and then wake up the next day feeling awful? 

 

I felt so normal last night that I booked dinner reservations for an upcoming trip to Vegas that I'm not even sure I'll be able to go on. Last night I was excited to go and booked at 3 of our favorite restaurants there. This morning I'm back to thinking, I may have to cancel this trip. 

 

I think songbird is correct, that the brain is only in the moment. I'd rather have last nights moment and not this mornings!

 

I have a busy work week. Working 6 hours today, tomorrow and Thursday. It is my first week of working 3 days. Praying it goes well. I will make it happen. 

 

Hope you are doing well. Praying for you and sending hugs.

 

 

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RusTW

 you think reinstating help us out to go back on and come down off of lower dosage or do you think we should have just stayed off. I was lucky yesterday and had a window yesterday afternoon this morning I feel a little bit better than I have been in the mornings. The things that I'm finding hard with my window is that I'm worried that the wave is going to come back so I got to try to keep that out of my head

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RusTW

 before I knew how these medications were affecting me I had extreme health anxiety I must have had every test Under the Sun done and everything came back negative now I realized it was probably the side effects from the medication

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mirage

Not sure about the reinstating, in our case, being good or bad. Either way, we can't look back. Here is where we are and the only way to go is forward. 

 

So glad to hear you had a great window. We have to try and embrace the windows and not look that a wave will follow. One day, no wave will come. The window will stay open and we will be free to go on loving and living life and we never know when that will be. 

 

I had my very first, symptom free wave, late last night. It was so WONDERFUL to be free of the dizziness!!! It felt so great! Woke up this morning, with the same yucky symptoms and my old friend, dizzy. 

 

I am working today, tomorrow and Thursday. Six hours each day. Just got a smidge of a break and I have another client coming in about 20 minutes. I have to stay very, very focused. The dizziness creates a pretty heavy brain fog and does it something odd with my eyesight. I am a hairdresser so some days I wonder how people really look when they walk out the door. lol. They seem to be very happy when they leave so I take that as a good sign. It is a nice feeling to help people feel good about themselves. It isn't a, high pay job, but I love what I do and making people happy. Besides that, all of my clients are amazing! So it is a win, win. 

 

Hope your day continues to be on the better side. Bless you and stay strong.

 

 

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mirage

I never had anxiety, before or during the med. Until...the month after I stopped. It is crazy, automatic, fake anxiety. It is just here and comes and goes on its own. I use the term "fake" because I know it is not the real me causing it. It is this, overactive nervous system making it happen.

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jonnypeters1234567

Dont reinstate if you are able to work, it could be alot worse, trust me

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RusTW

 it's it's great you had a window I'm happy for you I had one last night also hopefully mine continues I'm glad you're staying focused on work it does really help to have something to do and somewhere to go have a great day today yourself talk soon

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mirage

@jonnypeters1234567 I reinstated last July, 2017. It was 6 weeks after I quit ct. It has been a year of symptoms and a whole lot of awful. No reinstatement, at this point from me that is for sure. I am holding at 150mg until my system gets back to more of a norm and then I will finish the wean. 

 

@RusTWThank you. Are you working? 

 

 

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RusTW
6 minutes ago, jonnypeters1234567 said:

Dont reinstate if you are able to work, it could be alot worse, trust me

We did already at a lower dose .still have symptoms

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jonnypeters1234567

Sorry misread- thought you were considering reinstating

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RusTW

 when I first started taking when I first started taking Ativan I was withdrawing with during the next day because it has a short half-life so if I took it at night by midday the next day I would be having extreme anxiety and I didn't realize what was happening to me until later that anxiety went away for a while after I discontinued Ativan but then when I stop the Seroquel cold turkey everything came back the anxiety and the nausea and many other symptoms also my opinion is antipsychotics are harder to come off of than benzos. No I don't have to work today it's weird because on the days I don't have to work I seem to be a little bit better I think it's a mental game I play with myself about having a bad day at work with the Sickness in the place I work I have to be up at e and cheery all day so that other people don't notice it's a part of my job so I have to keep my game face on without showing anything I really think that helps me though it work keeps me centered and focus on what I need to do

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mirage

@jonnypeters1234567 no worries. Thank you for wanting to be of help. I appreciate that. 

 

How are you doing?

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mirage

@RusTWI'm with you about putting on your happy face with work. That is what I do as well. I'm here to make others feel good about themselves. If I start whining about how crummy I feel, I would have to pay them and they would run and never come back. lol. 

 

Part time work is perfect for what we are going through. It is enough to help get our mind off of things and enough to keep us in to some type of regular life and routine. Yet, gives us time to relax and heal. 

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jonnypeters1234567

Not great to be honest 13 months off CT. At the end of first year I was pretty functional, going to the gym etc. I have been pretty bad for about a month. However this morning was the best for a while, feel more in reallity. Its so hard to predict anything as symptoms keep changing daily- confused by the whole thing! Hoping for a  turnaround at 1.5 years. 

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