Chrysanthemum's Story.

When I pictured writing my success story, I thought I would just wake up one day, feel great, and write the post. It was a lot more gradual than that. Waaay too gradual for the most part. But, this past summer I went to the theater often, flew to Disney for a few days, drove to the ocean for the rest of the week, flew home, had company over two or three times a week, resumed the job of grocery shopping that I had passed on to my son, and cleaned my house from attic to basement, with the help of my cleaning lady. I am more or less living a normal life. THAT'S the definition of success. My story is a long one and I have decided to break it up into categories so people can skim through what interests them. I know I spent a lot of time reading Success Stories and made a vow that I would write one too, even if I wasn't a daily part of BB anymore. So, here goes.

 

 

 

WHY I WAS ON BENZOS

 

To make a very long story short, I was diagnosed with Interstitial Cystitis, was IMO improperly medicated, and fell down the rabbit hole. With each medication there were side effects, and then more medications were added to address those. The more medicated I was, the more fatigued I was and more helpless I felt. I had never been clinically depressed or had an anxiety disorder until I was medicated. I am embarrassed to say I was on Klonopin for about 10 years before I saw the light. I only took it at night and I thought I developed a fatigue disorder. UGH.

 

WHY I WENT OFF OF BENZOS

About seven years ago, I went to see a Psychiatric Nurse Practioner because I felt anxious and a little depressed. After some time, she said I don't understand why you are on all these meds when you have no history of psych issues. I think I was on Effexor, Topamax, Adderall, Armour Thyroid, and Klonopin at this point. I went off of all of them except Klonopin and was just starting to taper off of that when I herniated my neck badly. The Dr. actually upped my klonopin (from about .5 to 2 mg) because I wasn't sleeping at all. At this time I was still fairly naive about benzos. I had neck surgery eventually and then hurt my back badly. I had two major back surgeries and was put on an opiate (OPANA) and was still on a benzo. This is where things fell apart. I was in constant tolerance withdrawal. I was so tired I could not function. I did not sleep well.  My pain Dr. said that it was a very dangerous combination and I needed to get off of the klonopin. For the next two years I tapered off of the benzo and the pain meds at different times and different rates but it was all HELLISH. There is a synergistic effect that occurs with a benzo and an opiate which makes each stronger so when I was tapering off a benzo, I also experienced opiate w/d. I got stuck at .375 mg of klonopin, switched over to about 7 Valium, and tapered off of that at a rate of about 1 mg a week. I was then left with the opiate taper, which was also hellish. I ended up going to a recovery center this last January and did a medically superivised detox.

 

SYMPTOMS

 

These are the symptoms I experienced during my taper: metallic taste, headache, head pressure, electrical pulses in the face, eyes hurt, sinus' hurt, sensitive to light and sound, ear aches like the start of an infection, teeth hurt, jaw hurts, sore throat, swollen glands, shoulder pain, back ache, chest was tight, stomach felt swollen, stomach ache, THIRSTY, GI symptoms, all over body aches and pain, off-balance, dizziness, cold sores, extreme temperature switch from very cold to very hot, flashbacks of painful memories, couldn't sleep, unmotivated, lethargic, overfocused, anxious and depressed. TIRED!! I was incredibly fearful, which ultimately led me to have a lot of difficulty with this forum. I was scared out of my brains that someone would end their life. I was also very scared of being a featured person on a person's blog who mocks this process. THAT is a HUGE change as I now see how silly that blog is now. But, I could not see it then.

 

If I didn't know it was benzo/opiate withdrawal, I would have thought it was entirely possible that I was dying. I have had a lot of medical issues in my life, am considered strong and brave by those who know me, and that taper kicked my a$$.

 

TAPERING

 

There is so much talk on here about taper rate. In an ideal world where I had minimal symptoms I would have done a liquid titration off the benzo. Apart from the fact that I didn't even know that was an option until too far out, I was also on a heavy duty opiate which complicated things. I wish I would not have switched over to Valium and I would have done a liquid taper off the last bit of Klonopin, and I would have divided my dose into 2 a day. As I was symptomatic throughout I just wanted to get off the meds as quickly as possible. It pains me to see people micro-taper off a few mg of Valium WHEN THEY ARE SYMPTOMATIC.  IMO, if you have a lot of symptoms, move quickly so you can get into the healing phase. I swear I did not see the fatigue lift, until I was completely off of the benzos.

 

As far as the opiate taper, I became more and more sick as I went on. I finally found a facility that would do a medical detox (clear across the country from me) that would NOT use suboxone. I had trouble trusting the process because they use a lot of meds but by week's end, I was off most meds. I stayed on clonodine for a few weeks after and then stopped that. I also took Melatonin for a few months and then stopped that as well.

 

 

 

WHAT HELPED

 

This forum helped to validate my symptoms. I know that my symptoms were worse than a lot of people but I was also on an opiate too, so there was a great escalation of symptoms. I had tons of symptoms long before I ever heard of this forum and then to see other people experiencing them as well was comforting. With that said, I did not spend time googling every symptom -- I chalked them all up to benzo withdrawal and moved on. I had Dr.'s who supported me, especially a NP who was supportive throughout. I read a lot of online blogs about things other then benzos. Decorating blogs, parenting blogs, recipe blogs. Anything that could distract me. I actually started my own blog, written under a nom de plume where I talked about health and motherhood. I watched tons of TV. I watched entire seasons of HIMYM, Sex in the City, The Office, Friends, Mad Men, and more. When I could go for a walk, I did.

 

Dietary changes made a big improvement in my symptoms. When I stopped caffeine during my taper, I felt better. I also avoided neurotoxins in foods and also felt better. I eat a very clean diet these days, proteins, lots of vegetables and some fruit. When I eat poorly, my symptoms can really flare up.

 

WHAT DIDN'T HELP

 

Honestly, getting involved in BB drama did not help and I realized quickly I needed to keep a pretty low profile. Watching the news was terrifying to me so I avoided it.

 

LIFE TODAY

 

I now know why people do not come back and write success stories. All of the craziness of this seems like it happened to another person. I DO remember every bit of it. It seemed never ending. It was the most HELLISH, challenging, experience and I recognize that but in a very detached way. I just don't FEEL it anymore. Talking about benzos bores me, which I think is a very healthy sign. I had a lot of family issues throughout my taper with a young adult daughter who is an alcohol and drug abuser, and THAT just about knocked the life out of me. Within two months of my final opiate dose, I hired an interventionist and off she went to treatment where she remains five months later. My home is peaceful and quiet and my other children are in college and doing very well.

 

My life is far from perfect, but I started out on this road many, many years ago with a bladder disease and was way over-medicated and lost my voice and my self. I finished this journey with the same bladder disease but I am on but one medication: ELMIRON, which is a very benign drug. I am still regaining strength in my back and my body is getting stronger through excercise and diet. For good or bad, I am back to my own self. I have seasons tickets to the ballet, and to a few other theater companies as well. I see friends and family throughout the week. I am looking for a part-time nanny position so I can have some extra fun money and to also fill up a little of the quiet space in my life since my children are away more often. Two years ago I could barely function. Today,  I take a shower like it is no big deal and that was one of my hardest activities for more days than I care to admit.

 

 

I think of all of you often and pray for your success. So many of you helped me on this journey at different times so THANK YOU, all of you! You are a courageous bunch and I have learned a lot from you. This forum is a valuable resource for many and I applaud the efforts of all who run it.

 

A few weeks ago, I went to pick up my son at his college which is about a 2.5 hour drive away. I had car trouble and broke down in a very small town on Labor Day weekend, where most everything was closed. To make a long story short, what would normally be a five hour round trip took about nine hours with lots of things that went wrong along the way. It didn't faze me in the least. I was pleasant and problem solved and eventually we all got where we needed to go. After surviving the hell that was a benzo/opiate taper, I welcome normal life problems. I shrug my shoulders, count my blessings, and carry on.

 

I wish you all a return to the ebbs and flow of a normal life. Honestly, if I can recover, anyone can.

 

LOVE, 

Chrysanthemum

 

 

PS OMG, I did it!

 

:smitten: :smitten:

 

I'm thrilled to read your success story and am so happy with all the parts life you are enjoying and experiencing.  Thank you so much for coming back and posting this.  It is stories like this that gave me hope in the dark days and will do that for our members here.

 

Hey, normal is pretty darn good.

 

pianogirl

This made my Saturday! Thank you for returning to tell your story. It is well written and full of helpful observations.  I am so happy for you. Enjoy your beautiful life!

Carita

 

 

:smitten: :smitten:

 

I'm thrilled to read your success story and am so happy with all the life you are enjoying.  Thank you so much for coming back and posting this.  It is stories like this that gave me hope in the dark days and will do that for our members here.

 

Hey, normal is pretty darn good.

 

pianogirl

 

Normal's the goal! Thank you PG for your kind words. I remember you from when I first came on here, two years ago. What a gift you are to this forum, staying here and encouraging others. I wish you continued good health and many happy hours at the piano! xo

This made my Saturday! Thank you for returning to tell your story. It is well written and full of helpful observations.  I am so happy for you. Enjoy your beautiful life!

Carita

 

Thank you. YOU will get here, too! Hang in there.

  Beautifully written and a Great success story.  Thank- you for writing it.....Now get on with your Life !!!!      Jude

Hi chrysanthemum,

 

I am so glad that you came back to write your success story.  When members read another encouraging success story like yours, it gives them the will to keep pushing on until that day when they too, can write their success story.

 

You are a very special lady, loved by many ... who now has the confidence, and the courage to conquer, without fear or reservation, whatever it is in your life that needs conquering.

 

I wish you tons of happiness. 

 

pj 

 

 

 

 

  Beautifully written and a Great success story.  Thank- you for writing it.....Now get on with your Life !!!!      Jude

 

Thank you! Best wishes to you!

Hi chrysanthemum,

 

I am so glad that you came back to write your success story.  When members read another encouraging success story like yours, it gives them the will to keep pushing on until that day when they too, can write their success story.

 

You are a very special lady, loved by many ... who now has the confidence, and the courage to conquer, without fear or reservation, whatever it is in your life that needs conquering.

 

I wish you tons of happiness. 

 

pj

 

Awww, PJ. What a voice you have in this forum. I always enjoyed your calm and measured responses on here. I used to hang on to those success stories like crazy so I know how important they are. I am still a little bit in shock that I just posted mine!

 

Thank you for your kindness. There is much in my life that needs conquering, but you're right, now I have the courage. A ton of happiness is wished right back at you!

 

This is absolutely fantastic news! Thank you for writing this. Here's to the many, many fantastic years ahead of you, living your life without being under a cloud of unnecessary meds.

 

Congratulations!

 

M. 

This is absolutely fantastic news! Thank you for writing this. Here's to the many, many fantastic years ahead of you, living your life without being under a cloud of unnecessary meds.

 

Congratulations!

 

M. 

 

OMG! Remember the color print debacle! HAHA! I remember we finally settled on blue. What a kind and generous spirit you are. I hope you are healing, too!

 

 

This is absolutely fantastic news! Thank you for writing this. Here's to the many, many fantastic years ahead of you, living your life without being under a cloud of unnecessary meds.

 

Congratulations!

 

M. 

 

OMG! Remember the color print debacle! HAHA! I remember we finally settled on blue. What a kind and generous spirit you are. I hope you are healing, too!

 

:laugh: Remember, it was all because I said I was green with envy because you were able to do your laundry! 

 

You sound terrific! Thank you for your sense of humor and understanding. I'm glad those days of long ago are far behind us! 

 

M. 

This is absolutely fantastic news! Thank you for writing this. Here's to the many, many fantastic years ahead of you, living your life without being under a cloud of unnecessary meds.

 

Congratulations!

 

M. 

 

OMG! Remember the color print debacle! HAHA! I remember we finally settled on blue. What a kind and generous spirit you are. I hope you are healing, too!

 

:laugh: Remember, it was all because I said I was green with envy because you were able to do your laundry! 

 

You sound terrific! Thank you for your sense of humor and understanding. I'm glad those days of long ago are far behind us! 

 

M. 

 

LOLOL. I am beyond glad those crazy days are gone.  It all seems so silly to me now but then? Not so much. I remember thinking when Colin got involved in squabbles on the forum, "How does he remain so calm and detached?" Now, I know!

 

I am truly laughing over the laundry thing. I might just go back and look it up one day! (I never revisit old posts -- so depressing!) I hope you are doing better. 

Thank you for your good wishes. I am doing so well in fact, that I will be posting my own succes story soon - but first I have to figure out HOW to do it!

 

You did a beautiful job, very well organized and well explained. I just don't know where to begin............ 

 

I have recently been able to read my old posts. It's beyond strange to read words that you have no concept of ever writing. But I must admit, I usually agree with those words in green! 

 

M. 

Congratulations, and thanks for being so inspiring.

 

You mentioned that your diet was very helpful and that you avoid neurotoxins in your diet. Can you very kindly tell us what some of those foods/ substances are?  Did you avoid high glutamate foods also?

 

Warmest regards and hearty congratulations,  ~OneLove 

Happy for u.

:smitten: :smitten:

 

I'm thrilled to read your success story and am so happy with all the life you are enjoying.  Thank you so much for coming back and posting this.  It is stories like this that gave me hope in the dark days and will do that for our members here.

 

Hey, normal is pretty darn good.

 

pianogirl

 

Normal's the goal! Thank you PG for your kind words. I remember you from when I first came on here, two years ago. What a gift you are to this forum, staying here and encouraging others. I wish you continued good health and many happy hours at the piano! xo

 

Hi Chrys,

 

We have had quite a bit in common with our neck problems and although you have had back problems, mine have centered around my shoulders.  I'm very happy to help out here when I can. I'm still rehabbing from my latest shoulder surgery so my activity level still is not back to where I would like it to be.  With my flexble teaching schedule I'm glad I can offer my help to this fine support forum.

 

Isn't it wonderful how small things like doing your own grocery shopping can be such a triumph. I continue to appreciate even the smallest parts of every day life, I hope I never lose this.

 

PG 

wow  how phantastic and well written. this made my sunday.

thank you and all the best.

Hello Chrys,

 

Thank you so much for coming back and posting your story. It is inspiring on this gorgeous fall Sunday morning.

I agree with Onelove, I would like to hear what you consider to be a healthy diet too.

And thanks for sharing what you did to distract yourself.  It really does help to have examples. I never knew I could be so non-creative and thoughtless.

 

Thank you so much for coming back here to share a success story with us. We need all the success we can get.

 

I watch so much TV I am sick of it already...I am hoping my ability to read comes back soon...Being stuck on the couch day after day is difficult, so hearing what I can do to distract and not think about the symptoms or the time helps more than you can know.

 

Go live your healthy life and continue to be well.

 

Causing

 

OMG Chrys you did it!!!! I am sooooooo happy for you. You were always such a support to me in the worst days. There you were feeling awful but supporting someone else. I will never forget that. It was awesome reading your success story-you sounds great and prove that we really do heal from this. Many blessings to you and your family!!

 

XO,

Tina

Congratulations, and thanks for being so inspiring.

 

You mentioned that your diet was very helpful and that you avoid neurotoxins in your diet. Can you very kindly tell us what some of those foods/ substances are?  Did you avoid high glutamate foods also?

 

Warmest regards and hearty congratulations,  ~OneLove 

 

I am 100% certain that the neurotoxins in food make symptoms worse. One of the culprits for me was protein shakes. You think you are giving your body the nutrients it needs during a stressful time, but it made my symptoms flare. Initially I was always sick so I couldn't see what contributed but as I started to have healthier days, I was able to see some connection to my flare ups. Even this summer, I was feeling better and I thought that is ridiculous and I had a protein shake (usually the culprit is carrageenan) and I was sick and on the couch for a week. I also flared up from a green smoothie. Too many concentrated vitamins for me to process at one time.

 

The last phase of healing and feeling well came for me when I adopted a simple diet of lean protein, healthy fats, eggs, nuts, and fruits and vegetables. I would think that would be difficult to do when you are still feeling pretty sick but an apple with organic almond butter is not too hard. Roast chicken and vegetables is pretty do-able. I never was one to use any processed food for meals, but I did of course, eat unhealthy snacks. I plan to continue this Paleo based diet for awhile and eventually phase in more complex carbohydrates. I also avoid herbal teas and caffeine. I can't drink coffee or acidic drinks due to a bladder condition, so I can't speak to that.

 

Here are a list of neurotoxins commonly found in packaged foods: Neurotoxic Chemical Food Additives

 

aspartame

autolyzed anything

barley malt

beef base

beef flavoring

beef stock

bouillon

broth of any kind

calcium caseinate

carrageenan

caseinate

chicken base

chicken broth

chicken flavoring

chicken stock

disodium anything

dough conditioner

flavoring

gelatin

gelatinized anything

glutamate

gaur gum

hydrolyzed anything

kombu extract

l-cysteine

malt anything

malted anything

milk solids

monosodium glutamate

natural flavor

nutrasweet

pork base

pork flavoring

protein concentrate

protein extract

seasoned salt

seasoning

smoke flavoring

sodium caseinate

solids of any kind

soup base

soy extract

soy protein anything

soy sauce

spice

stock

textured protein

textured vegetable protein

umami

vegetable gum

whey anything

yeast extract

 

Hope this helps!!

 

 

 

 

 

Happy for u.

 

Thank you! I used to LOVE to hear about people who healed and hoped, hoped, hoped that one day it would be me. I hope that one day it is ALL OF US.

 

Best Wishes.

 

:smitten: :smitten:

 

I'm thrilled to read your success story and am so happy with all the life you are enjoying.  Thank you so much for coming back and posting this.  It is stories like this that gave me hope in the dark days and will do that for our members here.

 

Hey, normal is pretty darn good.

 

pianogirl

 

Normal's the goal! Thank you PG for your kind words. I remember you from when I first came on here, two years ago. What a gift you are to this forum, staying here and encouraging others. I wish you continued good health and many happy hours at the piano! xo

 

Hi Chrys,

 

We have had quite a bit in common with our neck problems and although you have had back problems, mine have centered around my shoulders.  I'm very happy to help out here when I can. I'm still rehabbing from my latest shoulder surgery so my activity level still is not back to where I would like it to be.  With my flexble teaching schedule I'm glad I can offer my help to this fine support forum.

 

Isn't it wonderful how small things like doing your own grocery shopping can be such a triumph. I continue to appreciate even the smallest parts of every day life, I hope I never lose this.

 

PG 

 

I find the most triumph in the small things because the loss of the ability to do even simple tasks was so defeating. It was so difficult to take a shower then. Grocery shopping was like the Holy Grail, laughable in its magnitude. The feeling of lead in all my veins made it difficult to walk up the stairs. It's all coming back as I am I writing here. They were the longest, most helpless days of my life. I merely endured and I am so grateful that those days are behind me.

 

(My son is playing the piano as I am writing this ) That reminds me that I couldn't tolerate music in my life either and I LOVE music. Now I can sing in the car as loudly as the rest of them!

 

 

 

wow  how phantastic and well written. this made my sunday.

thank you and all the best.

 

I see you were on quite a lot of drugs, too and now you are free! I hope you are on a good path to healing.

Hello Chrys,

 

Thank you so much for coming back and posting your story. It is inspiring on this gorgeous fall Sunday morning.

I agree with Onelove, I would like to hear what you consider to be a healthy diet too.

And thanks for sharing what you did to distract yourself.  It really does help to have examples. I never knew I could be so non-creative and thoughtless.

 

Thank you so much for coming back here to share a success story with us. We need all the success we can get.

 

I watch so much TV I am sick of it already...I am hoping my ability to read comes back soon...Being stuck on the couch day after day is difficult, so hearing what I can do to distract and not think about the symptoms or the time helps more than you can know.

 

Go live your healthy life and continue to be well.

 

Causing

 

I did respond to OneLove (Bob Marley reference?) with a list of neurotoxins but I can give you an example of my diet. For breakfast I might have a frittata with broccoli, ham, and a bit of cheese with sliced tomatoes and then a slice of melon. Lunch is spinach salad with chicken, and cut up vegetables. I make a dressing with olive oil, balsamic vinegar, a dab of  mustard and honey. Dinner would be maybe turkey meatballs over spaghetti squash or a roast chicken and roasted vegetables.Snacks would be apples and almond butter, Celery and almond butter and raisins, cut up cucumber with cream cheese, or almonds and cashews. These are just a few ideas. There are a ton of blogs devoted to Paleo eating and they are helpful. I am still navigating my way through a lot of them. Last night I made tacos on zucchini boats and even my college age son loved them

 

As far as distractions, boy do I get it. I literally watched entire SERIES of TV shows. I found it better to just watch them in sequence rather than try to find stuff on TV. I really don't like the TV on now much because it reminds me of those seemingly never ending days. I watched so many series, many more than I had listed. If you need more ideas tell me and I will list them.

 

I also had great difficulty reading which is hard, because I am a life long lover of books. I still have a bit of difficulty concentrating so I am re-reading classics. What I did read at the time was a lot of blogs on every topic imaginable. They are short and easy to read. You can just google TOP 50 blogs for (insert topic you like here) and that is a good place to start.

 

Hope this helps and good luck!