Heather Rose: Hello

[HeatherRose]

thanks so much :-)

[JanCarol]

Heather, do you have a PDF reader?  It's a little app, utility, or piece of software.  Every computer should have one, they are free.  I use one called Foxit, hubby uses one called Adobe Acrobat - both are "readers only" (you can look at document but cannot change them) and they integrate into your browser, so they can open in a browser window, or open in the reader window if a browser is not being used.  That will help you read list?

 

Remember, this is  a community full of people - I challenge you to visit someone this week - may I suggest friend Shep? - and read their thread and find out what they have experienced.  When you comment on other people's threads, you get more visitors, here, who want to know how you are going.  You start to care about one another, and feel less alone in your journey.   I'd invite you to my thread, but my trip isn't typical withdrawal.  But heck, come on over to my thread, anyway, you might find it fun.

http://survivingantidepressants.org/index.php?/topic/5234-%E2%98%BC-jancarol-reboxetine-first-then-lithium/

[HeatherRose]

Jan,

  I have started to read. Have read YOUR journey quite a bit and though we have known each other forever I have missed some parts of your life that I am now discovering. Very interesting and insightful!

 

Shep,

  I have started reading about yours as well. You are a very helpful person and a good guide and have a wonderful way of speaking about things.

[HeatherRose]

Okay...here goes. Some issues. I have started having some weird movements with my tongue in my mouth. Has anyone had that? Is it the invega? My head shaking  is also a problem. It is very visible and makes me feel freaky out in public. I worry what people with think. I hope no one can see my tongue moving either. It is not really a big movement but still i can feel it. I hope going off the Invega will help all of that stuff.

 

I can't type very much. My neck is hurting and tight and I have been having pain in my left hand. From the outside of the palm by the pinkie finger all the way down that side of my arm to just below my wrist. I have self-diagnosed myself with Thyroid Myopathy since I cannot rid myself of the aches and pains and I have read that it can also cause carpal tunnel syndrome. Not sure if this is what this is though. Has anyone else had CTS and can tell me what and where it hurts?

 

Anyway, neck is very painful this morning so i am off to take some tylenol and try to rest it on the pillow. Thanks for everything.

[Shep]

Heather,

 

I'm concerned that your tongue movements may be tardive dyskinesia:

 

Tardive dyskinesia or involuntary movements

 

Please make note of your symptoms. Antipsychotics are the usual culprit for TD, so please read through the TD thread and feel free to ask questions. Coming off the Invega is a great start toward healing from this, but please note that any antipsychotic can cause TD, including Seroquel. Please take all of this information into consideration as you set up a strategy for your medications. There are ways of handling certain symptoms without meds, so targeting your non-drug coping skills should be a part of your narrative. 

 

We can help you set up a good game plan going forward. 

 

I hope you're feeling better today. Please keep posting updates. 

 

Sending healing vibes your way. 

[HeatherRose]

I hope it is not TD. It is very slight. I have had involuntary movement of other kinds that I think are NOT TD. I have had shaking now for many, many years. IT seems when I am stressed I always start with shaking. Right now I am concerned about the tongue thing and will bring it up with my doctor.

 

 

I would welcome any help with a game plan for moving forward. I am right now experiencing a deeper depression and more stress the last few days so am on here writing about it. The feelings come and go. My anger and angst about friends that have abandoned me and my worry about my body and how it is reacting to life in general. I feel my body is falling apart lately. I had a tooth pulled today so I am out of whack in many ways. It was a traumatic start to the day and the whole day has been spent trying to deal with the after effects--taking a pain pill which makes me itchy and feel weird-kind of tired and wired-but was necessary and trying to find easy, smooshy things to eat. And a sadness in some ways on having to lose another tooth. I have very weak teeth in general. Have lost many teeth. But I think the Norco is not doing me any favors so I am not taking any more. I will take tylenol if i have any further pain.

 

I am thinking I will be paying very close attention to my body and muscle feelings and such in the next few weeks. I will try to make notes if i can although I tend to start things and then they trail off and I forget to continue doing them. But I will definitely continue to post here and read further on other people's forums and feeds. I am finding this helpful.

[HeatherRose]

So i got a job today. I am excited and nervous about it. On one hand it is exciting to have a new job. I will be working at  a Starbucks in a kroger grocery store. They have all kinds of stuff in this grocery store....starbucks, a bistro, a deli, bakery, wine and beer area...etc...but on the other hand i will be having to monitor things very closely as I am starting back on my seroquel at the same time as my orientation and first couple of weeks on the job. I am actually very relieved I wont' be going to my family's up in Chicago as that was stressing me out--the time on the bus, the travel, the time with other people (even my family), etc...and will now be in town to start my new medication change but hopefully will be okay to start this new job. I am excited as I LOVE coffee and Starbucks and need the money very badly. But definitely hope that I can handle the job and also the med change at the same time.

[ChessieCat]

Hi Heather,

 

Congratulations on getting the job.  That is really great news.  And it nice that you are excited about it.  I hope it all goes well for you.

[HeatherRose]

Thank you!

[AliG]

Heather.  That's exciting particularly if it's in an area that you have a passion for. Wishing you all the best in your new endeavour. 

Ali

[Shep]

Hi, Heather.

 

Wow, you are handling everything that life throws at you beautifully! You made it through dental work and went out and got a new job! Congratulations! 

 

You have many great coping skills already in your toolbox. You mentioned being a runner and staying active before you got sick. And you are not someone who seems to want to stay down even after a recent hospitalization.

 

Please keep posting, as what you're documenting is important. I'm hoping you may either not need Seroquel or that you can keep to an extremely low dose. Even if your symptoms such as tongue movements are not connected to TD right now, TD is still a possibility in the future with Invega, Seroquel, or any neuroleptic. And Seroquel is notorious for causing diabetes. Also, the neuroleptics are hard on cognitive functioning. And they are very hard to come off of for many of us. 

 

And since you're doing so well, I'm hoping this is a trend that continues.  Let's chat more and get the other mods and Alto to weigh in before you reinstate the Seroquel. Perhaps there are other ways of handling your symptoms that will not put your long-term health in jeopardy. 

 

Sending healing vibes your way. Again, many congratulations on your recent accomplishments. 

[VitaminB]

Congrads on getting back to seroquel and being able to handle a new fast-paced job. 

 

http://kellybroganmd.com/vitalmind/a/?utm_source=KellyBroganMDNewsletter&utm_campaign=afae5a2f4b-VMRPromo#2&utm_medium=email&utm_term=0_d0f977a8c5-afae5a2f4b-121933269

 

I wanted to let you know Kelly Brogan is doing an online support summit thing. There is a payment plan for it. I am thinking about taking it. 

[HeatherRose]

I am a little nervous about the job. My thyroid issues have caused many intense body achiness and pain. I am excited too but hope my anxiety doesn't get too much with the fast pace. I see my doctor about the med change on Tue. I really want to go back on seroquel for awhile. It helps me with racy,scary thoughts and social anxiety. But I want to wean again later just more slowly.

[JanCarol]

Do you know what dose of Seroquel he will be giving you?  Do you have a dose in mind?  Maybe the last amount you were on?  Was that 300 mg?

 

How do you talk to a doctor about tapering and withdrawal?

 

What Should I Expect From My Doctor About Withdrawal Symptoms?

 

https://beyondmeds.com/2013/03/18/the-truth-is-often-ugly/  <---this is GiaK - a sometime moderator here, and someone who has survived as many drugs as you have!!!!!

[ChessieCat]

Hi Heather,

 

Being nervous about starting a new job is absolutely normal for anybody.  I've heard of singers and stage performers who struggle with extreme lifetime nervousness before every performance.

 

One thing that I have discovered from personal experience is that even though someone may look like they "have it all together" it can just an appearance. A few years ago I had the opportunity to hear someone speaking at a careers day and she was honest during her talk about the fact that even though she had spoken in front of groups during her work life she always felt nervous speaking to a group of people.  In this case we were a small group of ladies who had just completed a 2 week Transition to Work course.  I spoke to her afterwards and thanked her for being so honest.  And to look and hear her speaking, if she hadn't told us, we would never have known.

 

Another lady who I learned this from was my mentor who I was matched up with after the Transition to Work course.  During the time of knowing her she was promoted and doing overseas trips to Japan.  She admitted to me that she was worried because she was struggling to learn some parts of the job before she went the first time.  She was one of those people when you looked at her and even talking casually with you would have thought she had it altogether.  I was privy to some of her thoughts and fears and her honesty has helped me when coping with new situations.

 

Even though I had been a fairly confident person before I started on ADs, during the last few years I lost most of my self confidence.  Getting my volunteer work has really helped me.  Just remember that you will probably get tired to start with but it will improve as time goes on.

[Shep]

Hi, Heather.

 

Are you still using Rozerem and Ativan for sleep? I'm wondering if you keep the Seroquel to under 200 mg, it might help with sleep, especially since you're interested in tapering these other meds, too.

 

Under 200 mg, Seroquel doesn't hit the D2 receptors, which are involved in tardive dyskinesia. And it will help with sleep at the lower dose - that was my experience and others report the same. Seroquel gets sedating the lower the dose, especially at 100 mg and lower. 

 

Just a thought. Please keep updating.

 

Sending healing vibes your way. 

[HeatherRose]

Shep,

  I will ask about Seroquel at 200mg instead of 300mg. I just want to feel better. I am so tired of feeling crazy inside. I use the Rozerem for sleep. But the Adivan I use when i am anxious--usually before i leave the house as my social anxiety is really high right now.

[HeatherRose]

Hi Heather,

 

Being nervous about starting a new job is absolutely normal for anybody.  I've heard of singers and stage performers who struggle with extreme lifetime nervousness before every performance.

 

One thing that I have discovered from personal experience is that even though someone may look like they "have it all together" it can just an appearance. A few years ago I had the opportunity to hear someone speaking at a careers day and she was honest during her talk about the fact that even though she had spoken in front of groups during her work life she always felt nervous speaking to a group of people.  In this case we were a small group of ladies who had just completed a 2 week Transition to Work course.  I spoke to her afterwards and thanked her for being so honest.  And to look and hear her speaking, if she hadn't told us, we would never have known.

 

Another lady who I learned this from was my mentor who I was matched up with after the Transition to Work course.  During the time of knowing her she was promoted and doing overseas trips to Japan.  She admitted to me that she was worried because she was struggling to learn some parts of the job before she went the first time.  She was one of those people when you looked at her and even talking casually with you would have thought she had it altogether.  I was privy to some of her thoughts and fears and her honesty has helped me when coping with new situations.

 

Even though I had been a fairly confident person before I started on ADs, during the last few years I lost most of my self confidence.  Getting my volunteer work has really helped me.  Just remember that you will probably get tired to start with but it will improve as time goes on.

 

 

Thank you so much. I haven't worked now in 6 months as a regular job so it is an anxiety producing thought but I think i will like it. I hope my supervisor is nice. It is very fast paced but I LOVE coffee so that will be fun. I start on Tuesday so will keep you guys updated on how it is going.

[Shep]

Shep,

  I will ask about Seroquel at 200mg instead of 300mg. I just want to feel better. I am so tired of feeling crazy inside. I use the Rozerem for sleep. But the Adivan I use when i am anxious--usually before i leave the house as my social anxiety is really high right now.

 

 

This sounds like a great game plan for the Seroquel.

 

But please be very careful with the Ativan. I had a 30 year history of using multiple benzos and z-drugs, so I know first hand how easy it is to escalate the dose. And it was this class of drugs that did the most damage to my memory, so please write down every time you take one, the dose you took, and make a note of your symptoms. Eventually, benzos turn on you and will cause more anxiety than they solve and that's how escalation happens. I wish I had known about this rebound effect many years ago. 

 

Any mindfulness techniques you can learn will definitely help with social anxiety. Breathing techniques and learning to become an "Observer" to your surroundings, letting things unfold as they unfold, allowing yourself to breathe deep and detach (it's what I call living in the land of "Beautiful Detachment") and knowing deep down you're going to be okay.

 

Or do the opposite! Get excited! You're already are excited about your new job, and the same chemicals that create anxiety also create excitement - you just have to reframe your thoughts. This is a good video about that:

 

http://www.theatlantic.com/video/index/485297/turn-anxiety-into-excitement/

 

So there's a lot of ways of dealing with anxiety that you can fill your non-drug coping skills toolbox with. These drugs are notorious for causing stress intolerance.  So the more you can work with these kinds of skills, the less the job stress will affect you. 

 

I hope this is helpful.

[HeatherRose]

I started the Seroquel last night for the first time. I was happy I got to sleep through the night and woke up feeling fine. I was able to focus better at work and not shake my head so much. I wasn't as jumpy. Maybe for awhile until I feel better it will be good to take it and then when things are going better I can start to taper it again. After the zoloft probably.

 

Had an appointment with my psychiatrist yesterday and told him I would like to taper off my meds. He told me being completely med free wasn't being realistic and i shouldn't have that as my ultimate goal. I told him how bad the meds are for you but he said first since I am done with the INvega he can probably take me off the propanelol in three weeks. He says I am doing a lot right now the new job and it's not a good time to start tapering. He says he would like to see me on maybe two drugs instead of the mix I have now. Perhaps if he sees I am doing well on less drugs he might consider letting me off all of them. But it's a hard sell with me. I have been hospitalized over 56 times--mostly for being a danger to myself--and he is reluctant to drive me down to that place again. He feels I am "safe" i think, on the meciations and that if i go off of them I will become severely self-destructive again. Self injury and suicide attempts were my go-to way of dealing with unrelentine depression back in the day. I think he is afraid. So if at some point--i hope by january or february we can start a small taper.

 

Then it will be up to me to hide my problems from him so I can stay coming down off the meds. Using non-drug coping techniques and trying to deal with the withdrawal symptoms pretty much on my own. My therapist will turn on me if she thinks I am having....ummmm....INTERESTING thought proecesses going on and if i become the least bit in danger to myself I know they will throw me in the hospital and start all the drugs up again.

 

I will keep you posted how the Seroquel transition is going.

[AliG]

Heather. It is up to you and not your uninformed doctor to decide where your health will lie in the future. I wouldn't take too much notice. As you become educated and informed your views will hopefully change. 

 

The aim is to get strong and healthy. Doctors can have a very limited view.

Stay strong and tell him what you want. !

Ali

[SquirrellyGirl]

Heather. It is up to you and not your uninformed doctor to decide where your health will lie in the future. I wouldn't take too much notice. As you become educated and informed your views will hopefully change. 

 

The aim is to get strong and healthy. Doctors can have a very limited view.

Stay strong and tell him what you want. !

Ali

 

I agree with AliG, here.  It sounds like you were never really in charge of yourself with all those hospitalizations, episodes of being a threat to yourself, etc. Going med free IS your choice, but you also have to choose to not be a victim of the emotional states that come about for whatever reason, be it the drugs' influences, tapering, etc.  AND, we all must finally be prepared to deal with the emotions or lack of coping skills that led us to drugs to begin with, because once off we may still be faced with "ourselves."  I think your doctor may be afraid that you won't be able to do that; you must take a stand and decide that now you WILL be strong enough.

 

James Heany (npanth, here on SA) has a blog I was just reading and he has some really good entries:  https://npanth.wordpress.com/category/ssri-2/

 

When I was in protracted withdrawal, I was extreme, but I didn't yet understand what was happening.  I hated being Me and reflected back on my life as it all having been bad, that I was always Bad, Inferior, a Failure, etc.  Once I reinstated, got stable and began to taper, I could look back on that time and see how extreme I was.  I am doing work now to re-wire my brain with healthier ways of seeing myself and handling life's knocks.  I have come a long way! It was always hard for me to say or feel that I "love myself."  Now I can.  We all must be able to love ourselves, the light side and the dark.

 

SG

[scallywag]

Heather, you may want to say to your doctor that you understand his concern and that what you want is to find the lowest effective dose of the fewest medications for you.

 

Neither of you know what the end point of that taper is. Your goal is zero; he doesn't need to know your goal or agree with it.

[Shep]

Hi, Heather.

 

It's good your doctor is at least interested in helping you reduce your drug burden, even if he's not convinced of coming all the way off. But as you decrease over the coming months, you'll add in some non-drug coping skills and build up your confidence.

 

Whatever emotional states were leading to your many hospitalizations will need to be dealt with very early in the process. I know from my own hospitalization experiences, these extreme states usually give some warning. So practicing things like mindfulness will help you catch your thoughts before they get too dark or start moving too fast.

 

And physical coping skills such as yoga can help you feel the intense energy or sadness in your body so you can address these feelings earlier.

 

Catching the earliest signs of an extreme state in the mind / body is the best way to deal with it early so it doesn't escalate and require hospitalization. 

 

And more coping skills = less medication. It's a process, but it's doable. 

 

Sending healing vibes your way. 

[HeatherRose]

Thank you so much for all your good words and advice. I am learning ways to cope with this. Running long distances was one of my ways but for other health reasons I needed to stop that. Being an ultrarunner was my passion and gave me back many things I had lost. Now that running marathons and uktras are out I must once again find a passion. Something to embrace and grow towards. I am sure I will find that place again. When I was running a lot I worked out a lot of stuff and it was great for me mentally and emotionally but not so much physically. But I wasn't hospitalized for years when I was running.

[HeatherRose]

Well I haven't posted in awhile. I got started back on my Seroquel 300mg last week and have been catching up on my sleep. BIG TIME. I sleep 12 hours at a time and take a nap  in the afternoon. Between that and working my new, demanding job at the coffeeshop I haven't had much time for anything else. The seroquel is helping me sleep but also keeping me calmer during the day. I have hypersomnia now instead of insomnia.

 

The Invega stopped last month but they let it get a month out of my system and then didn't get my shot on the 13th. Instead I started up the Seroquel 300mg on the 19th. Since then I have been mostly working and sleeping. It feels good to sleep again. My head is still shaking though....might be awhile of that. Which is unfortunate as it really shows people I have something wrong with me. I like to have a hidden disability better.

 

but overall i think for now the Seroquel is helping me because now that i can sleep i am feeling more calm and less anxiety during the day. But I know i will have to bring it down again at some point....i will figure out the tapering by december when is a good time to start. I may have to start without my doctor's approval.

 

I am going to vocational rehabilitation today to see if they want to refer me to a rehab hospital up in Indy that specializes in people who have had traumatic brain injuries. I had a major concussion 30 years ago that made me lose much of my memory and I was dilerious for awhile. I have forgotten many things before that time and around that time. Things people have told me we did and it is a blank. Things my old friends remember and I don't at all. People that say we knew each other and i don't remember them. My good friend i used to have told me her best memory of us was when we went to the Chorus Line musical at the arts center and it is a complete blank for me. Absolutely nothing. Weird. That happened 2 years after the accident. So if i get referred up there they will do some tests on my brain to see if it was affected and then if it has can refer me to the clinic here locally to get some good non-drug coping techniques for improving my memory and brain function. I think that, along with tapering the drugs gradually, can help me with my mental problems.

[VitaminB]

Hey,

 

I noticed your tags don't include seroquel. You might want to add it so people can search for your story. I am SO glad you can get your life back from getting off akathisia causing drugs. I hope we can support each other when you start decreasing seroquel. Decreasing too fast can rob you of your new life, staying on it means a longer withdrawal. 

 

Don't let your tremor get you down, maybe it just looks like nervousness. Your smile will disarm any judging negativity they may have. 

 

VB

[Shep]

Heather, that is such a positive update! I'm glad you're stabilizing on the Seroquel reinstatement and able to work. I hope the vocational rehabilitation brings you some relief from symptoms. Please keep us updated on how it's going. 

 

VitaminB, I agree with your wonderful comment - "your smile will disarm any judging negativity they may have". That's the perfect way to look at it and so very true. 

[manymoretodays]

Hi HeatherRose,

 

I saw a post of yours on another thread and just wanted to say that I love your avatar......."expectation is the root of all heartache".

 

I also read most of your introduction/journal and wow.......you are a trooper and inspiration.  Looks like you are getting tons of good input from some of our moderators and members and I will enjoy following your path............ even applying some of the stuff given in links and such in my own life coping.

 

Anyway......sending good intentions your way.......and healing

 

mmt

 

oh.......the music with earbuds(you mentioned that awhile back here).........helps me so much when I am trying to get through some of the more pesky chores I have to do and such........ or even just to get out of my own head and it's monologue sometimes. 

[Shep]

Hi, Heather.  How are you doing? Please check in with an update when you can. 

 

Sending healing vibes your way. 

[HeatherRose]

On 7/19/2016 at 11:18 AM, scallywag said:

Heather Rose, I just added tags to this thread. When searching for generic drug names, I discovered that Mobic is a brand-name for Meloxicam.

 

Is the same doctor prescribing Mobic and Meloxicam? Are you getting the prescriptions filled at the same pharmacy?

Yes I am getting the generic, Meloxicam. I get everything from same pharmacy

[mammaP]

Hi HeatherRose, how are you? Hope you are doing well. 

[JanCarol]

Please let us know how you are going.

 

Please let us know what your drug regimen is, and what is happening with you.

 

I hope you are okay, thinking of you.