Where am I??????The ups and downs of medication changes

[Kara29]

just wanted to explain some things to you all so you know why I am not the same "Kara" at the moment, as you used to know.

I've just gone from 3,600mg of Neurontin a day to 800mg a day now. In one week this happened. Then I started the Lyrica which I falsely thought was working for me and I am now taking 300mg a day and this happened in one week as well. I am no longer taking the Xanax for sleep. I have switched over to Clonazepam (Klonopin) becasue it is used for amputees. I've also gone from 3,000mg of Keppra a day to 1,500, all in one week.

These types of medication changes can really reek havoc on the body and mind.

I am reaching hard to get "Kara" back but at the moment, I can't find her in there. She's swimming around in a medication tornado and can't find her way out yet. She also is dealing with the hurt of not getting better after such major surgery. It's confusing when you feel great for 4 weeks after the surgery and then your pain is back one morning. Then you suffer and no one can give out the answers and no one knows what to do. Then I started Lyrica, was feeling better for a few days and now the phantom urgency is back again. It's devastating when you think of why this is all happening and you have absolutely no control over it and all of your doctors shake thier heads and say they don't know, including your own surgeon. The pain managment clinic says there is nothing left to try except relaxation. Been there, done it a million times. It does not take phantom urgeny away.

So where do I go from here? I don't know. To say the least I am 100% embarrassed that I posted so soon after my surgery. I should have waited for a year and then reported my experince. I just thought that someone may have benefited by seeing what I was going through.

I want you all to know how much I appreicate your love, kindness and support through everything I have gone through. It's priceless to have you all here.

I've searched for all of the answers myself and I can't figure this one out for the life of me.

I hope you all are doing as well as you can at the moment and learn in time to live a pain free life and go on an enjoy your families and friends.

I will try to post the positive things that come along in my journey and bring some positive energy to you once in awhile. Being around positve energery is really important.

If you'd like to view everything I write, again it will all be in my daily blog/journal. There I am a little more candid about my daily experiences and I don't hide the not so pretty part of the journey.

Sometimes healing in life is not a pretty site.

Thank you all for being so understanding.

Love,

Kara

[poetgirl]

You're doing the best you can, Kara, and no one faults you for it. For some people, recovery from major surgery takes a longer time. I know that's very frustrating, but just tell yourself this is only the beginning and not the end, and trust that your body will heal in time.

I'm sure this is very perplexing to your doctors as well. Remember, they only know how to perform the surgical procedures and can make recommendations on medications or therapies they think will work, but because everyone's body responds differently, there's no guarantee that the same course of treatment that worked for one person is going to work the same way for someone else.

Managing pain is very tricky, because there is a mind/body connection and not just physical sensation. Medications are useful, but they are not the only approach to wellness. I'd like to encourage you to think out of the box, because you're at a good point in your situation to examine other options than the traditional Western allopathic treatment model. Your mind plays a large part in your recovery, especially now that there is no urethra left to cause visceral pain. The nerves that were connected to the area are still sending signals to your brain that they're feeling pain from that area, but it's really just their "memory" of pain (like people who have suffered emotional trauma and continue to relive it in certain ways until some form of psychological therapy allows them to release that memory.) You are in the position now to tell those nerves, "No you don't feel pain, because there's nothing there anymore." Remember the links to the articles I sent you privately for hypnotherapy? I really think it's worth checking out. Hypnotherapy has been proven to provide people with IBS (mind-gut dysfunction--misfiring nerves) with significant relief and has also been helpful for people who experience phantom pain. It also provides more significant levels of relaxation than you'd get with just meditation or deep breathing alone. It might also be worth researching acupuncture or trigger point release therapy. Even something as simple as getting a 30 minute head, neck and shoulder massage will be beneficial to your body and state of mind, because it will help release all of this physical and emotional tension you've been carrying around with you these past weeks, and releases endorphins, which makes you feel better.

Medical physicians are essential in many ways, but from my own experience, I have found that the endless cycle of visits, calls, prescriptions and treatments tend to create more anxiety over time, because you're hoping for a quick fix ("This medication is going to be the one that helps!") and it doesn't always happen. For years I was skeptical of alternative or holistic treatment modalities because we're taught to consider medical physicians as the ultimate authority on wellness. But once I started incorporating other holistic modalities into my life, my health improved, and I learned how to do Reiki as an outpouring of that awakening and gratitude. The changes weren't instant, but I do feel better and I also have the confidence that comes with trusting my intuition about what's right for me and my body. This is, of course, my personal opinion, but as someone who is an energy medicine practitioner, I can't help but offer you some additional alternatives to the allopathic treatment model.

You know your body better than anyone else, so it's important for you to continue being the advocate for your wellness journey. I know that's hard and very tiring but you've come so far and so bravely that I am confident you will continue until you experience an acceptable measure of relief and healing.

I can't claim to understand the pain you're feeling. All I can offer is my support and understanding that this is a very difficult time for you.

Lots of love, hugs and prayers for your continued recovery.

[ICNDonna]

I'm so sorry you are still having so much pain. Hopefully soon your pain level will improve soon. You've come soooo far --- hang in there --- it's going to take some time for recovery. After surgery as complicated as yours, it will probably take months, rather than weeks.

I wish so very much that I could help.

Sending gentle hugs,
Donna

[Judith56]

Well said poetgirl! Kara, I am truly sorry that you are having such difficulty. I was once there too. It took me months and even years for some of my problems to get under control, and some still are there, but I have learned how to live with them. As for the pain issues, sometimes recognizing the pain and honoring it helps to come to an understanding. I know that sounds wierd, but it is true. It may not take the pain away, but it can help to learn how to live with it. Acceptance can be an empowering feeling. For many breathing techniques can play an active role in helping to manage pain as can mind- body work. It is not an easy road that you are on, but it is possible to navigate around the ruts in it. You just have to believe in yourself and the powers within you. Sometimes there are no answers to the questions- we just have to accept that things are the way they are.

[Marcie920]

I am sorry for what you are going through. Poet is right you are doing the best you can. That is all we can do is do the best you can considering what your left with.

[SharonA]

I continue to pray for you, Kara...

[Babs RN]

Kara,
You will most certainly be in my prayers. You will get back, sweetie, it will happen. I know it is frustrating to have setbacks and no answers but you will finally reach a place that is comfortable. Phantom pain is so hard to treat, maybe someone could get in touch with a VA hospital's pain management docs for some ideas? With the current conflict and the increase in amputations, quite a bit has been learned about the procedure and subsequent recovery. Please take care of yourself and know we will always be your soft place to fall.

Hugs,
Barb

[Kara29]

Thank You for taking the time to respond to this difficult post. I appreciate that you took time out of your busy day to write to me. I will take into consideration the allopathic treatment model. The only thing I have left is to delve into Alternative Therapy. I am going to be doing Biofeedback and Pain Management Counseling, I am just not ready yet to make the call to see if my insurance covers it. I need to fully integrate this medication switch before I leave the house. It's very dangerous to mess around with the anticonvulsant titration and driving the car. Once I have the end level of Lyrica in my system and I know how I react to it, I will make the move out. I will ask my Therapist is she knows anyone that works in alternative modalities.

Thank You Again for taking time to respond. Your insight is so helpful at this point in time as I have nothing left to try.

Kara

[sandramac]

Ive been praying for you kara ! love you The sun will shine soon And so will you! love and Hugs Sandra

[ICLori]

I'm so sorry you are having pain again - I am still holding on to the hope that this is your nerves being inflammed from the surgery itself, and that with time (hopefully not very much time) it will subside and you will then be pain-free forever.

Blessings,
Lori

[Trishann]

Kara, you have nothing to be embarrassed about. I'm so sorry you are going through all of this pain. I think Donna is right, this surgery was major and it will take longer to heal. And you definitely are right about the medication, it can do weird things. It takes a strong person to be so honest like you, and there is absolutely nothing to be ashame of.

Kara, be praying for you. Infact I'm going off the computer now, just so I can pray for you.

[Mel53H]

[Dixiefireball]

Kara,
Don't for one min feel badly for posting what you have already. Everything you have done will help someone. Even the road blocks you run into you find a way around them! You are an amazing person! Never stop believeing in yourself!!
We all get knocked down. What counts is when we pick our self back up.

You have done your best. You ran into a road block once again. You will find your way around it!!! I believe in you. So do all the others here, Your family and anyone else who has read and followed your story.

You continue to be in my prayers....
Rhonda

[Kara29]

Rhonda,

Thank you for still believing in me. I just took a big fall and really "hurt" myself and it will take me some time to pick myself back up again. I promise for you all, I will try.

Thank You Again!

Kara

[Kara29]

OMG I don't ever remember going through this much depression with the Cystectomy! It's aweful. Crying and Sleeping and Journaling. Nothing seems to be going right. My stoma and my Suprapubic are not draining at the correct rates, so I can't have the Suprapubic removed until that happens. Everytime I go I am measuing it and it comes up wrong every time!
And the Lyrica is making me more depressed but I have to stay on it to see if it's working or not. I have to keep going.

Up and Down. Did I sign up for horse riding lessons?

Kara