Myths and medication

Hello Steve and thank you for taking the time out before your Easter dinner to type out such an informative post. I tried to watch Bruce Lipton video but eventually fell asleep on it as I am getting by on very little sleep. I think I got the gist of it however and I have listened to Candice Pert and other teachings along those lines of thought and I buy it 100%.
Since I have been working on this since June, (actually read Sarnos’ books last March) it’s is clear that you are encouraging me to have patience and to change my life style. The reasons I need to see the mountain move sooner than later are as follows:
My husband, who was taking care of just about everything here, ( He serves as my ” legs”) suffered a heart attack in November. Granted he had high cholesterol, BP and triglycerides for years. But I am certain that his feelings of helplessness towards getting me well, and that fact that we have had no life were indeed contributing factors. The focus needs to be on his health now.
Formerly, he was quite active and physically fit. He is in an intense Cardiac rehab program and is gone for 15 hours weekly and sleeps the rest of the time, most likely from the workout or his many new medications. The situation here is far from ideal and not at all what we expected. The whole ball game is changed when you suddenly realize your spouse’s mortality. The preciousness of each day left together on this earth becomes more pronounced.
So not only do I dread losing him before we have had some ”fun” empty- nester years, but deep down I also fear how I would manage without him. Although I try to take control of my thoughts, I have fears of having to check into a “facility,” not being able to stay in my home if something should happen to him.( Add this to the life-long fears of abandonment that you address.) Yes, I know these thoughts are destructive, but at the same time we have to be practical and get our affairs on order so I cannot avoid them completely
I really have been working at changing paths but like a gambler at the slot machines, I need a few coins (of noticeable improvement) to pop out just to keep me “hanging in there.”
The other reason for my impatience is that I have a heartfelt desire to be with my family and friends. I will most likely have to forego a 4 hour car trip and overnight stay trip to attend a very special occasion for a loved one at the end of May. I want so much to be there with her.
There is no possible way that friends and family could understand how the intensity of the pain contributes to the isolation. In addition, I really don’t want anyone to comprehend the nastiness of this thing just for the sake of understanding, lest they too become depressed about the situation.
That is why I try to keep a stiff upper lip in the presence of others. Yet being “on” while I am in pain exacerbates the pain. A catch -22 I know.Sounds like people pleasing but really it as more to do with my upbringing. My journaling and self-examination is at a point where I realize that the only frustration and anger I have now is towards the situation/pain. That is why I have difficulty with the teachings to accept something so vile. I
agree with your statement that I am being deceived. This thing is Not who I am!
Yes Steve, have lived too!
Lavender

 

Thanks MiffyBunny,
So nice of you to respond, especially on a holiday evening. One of the reasons I was considering that particular medication as an option is that I have taken the steps to set some goals to conquer in the months ahead. They are but baby steps as outlined in Claire Weekes' book. This is explained in my reply to Steve Ozanich. My Dr. says if it were effective, I could possibly come off the Neurontin. I would much rather conquer my fears without it of course.
As to the pain, I do really have trouble with the part about making friends with it. Like setting out our best china on the dining room table for a slimy swine. I'd want him to know in no uncertain terms that he is not welcome in my house. (nor my body)
No more " Mrs. nice guy! " Ha!
Seriously, I am very happy for you in that it is clear you have made gains and I hope to join you in that very soon. Thank you so much for your care and information.
Lavender

 

Thank you so much for your kind and caring heart. It is soooo very interesting to hear that you discerned that the Allodynia was from the Neurontin! When that symptom flares up, it immediately takes me back in time to when I had this years ago so there is a definite trigger to the mind right there. I could then only wear silky thin clothing. It is not that severe this time. But I can feel the rough weave of the material in my little rolling office chair right through my jeans. Blah!
BTW, I think I may have hit the "like" tab twice under your post, which turns it into "unlike." So sorry!
Lavender

 

Hi Lavender,
Certain drugs will paradoxically perpetuate pain whereas other types of drugs have a different mechanism in the brain. Of course I'm not a doctor and it's just my personal opinion/experience. I'm happy to share because I deeply understand the nature of your physical pain. Having said that, it's actually an emotional journey that we are all on. I've read that our cells retain consciousness which leads me to believe that just as we can shift our thoughts, we can shift consciousness. I am convinced that Steve's words and message are "Truth". Although I still have a long way to go, I remind myself of where I was (nerve blocks, ketamine, wheelchair etc.). I try to use my progress as well as setbacks (today was particularly trying because the kids are off from school and this is the first time I've sat down aaah!). Steve has pretty much got me pegged and I would fall on the 9 level of the type T personality scale. It occurred to me today actually that I need to have compassion for myself and it took some of the pressure off. I guess we have to keep reminding ourselves that we are on the right path!
MiffyBunny

 

Hi Rich

Amytriptylene made me very dizzy, no "benefits" at all. I use delta wave music for meditation prior to sleep, it knocks me out like a light !

 

Thanks Mermaid ill give that a try.

 

Hi Lavender,

I normally go very gently when sharing my experiences and advising others, one size definitely does not fit all when it comes to healing our nervous systems.

However, I'm just going to take the plunge and say what is in my heart - get off medication, it's not helping to heal you and there is a good chance it's making you considerably worse. Don't put yourself under any pressure, no time limits, take it as slowly as you feel comfortable with. It could take a long time and you may have ups and downs, but it is so worth the effort I can promise you that. Taking control in this way also made me feel less of a victim, I didn't want to be a sick person any longer. The dumbest thing I ever did was agree to have a cranial nerve block, no more needles in the head for me thank you!

I'm sorry to hear about your husband's health problems, my heart goes out to you both.

You are stronger than you know, you can do this. Just take it a day at a time, and be kind to yourself and you will heal.

I'm sending you a huge hug ((( )))

 

This is my favourite :

 

Hi Mermaid

Thanks sooo much for this post. I am presently taking a massive dose of 2,400 mgs of Neurontin (4 x 600mgs per day), and 2mgs of Diazepam in the evening to help with muscle cramps in my head, face and jaw. Like you my pain began with daily migraine type headaches, and just progressed from there to a diagnosis of fibro, after extensive MRIs, a steroid injection into my jaw joint and manipulation of the jaw, many visits to neurologists and extensive physical therapy. I have been on the Neurontin for nearly five years now, and it seems like many others, have developed Allodynia since taking the drug. I am at the point now where my body is so used to this drug, it hardly makes a difference at all to my pain levels, and I have even been taking a small dose of paracetamol in the evening to supplement it, and help me get to sleep - on the advice of one of our wonderful NHS doctors here in the UK. Like you, I was also given other drugs before the Neurontin, (tramadol, from which I suffered horrendous withdrawal, amitryptiline which just made me feel ill and dyclofenac which I was advised to cease because of risk of heart disease.)

This Easter Sunday, I spent a joyous day having dinner with my son and his wife, after which we had a hilarious walk with friends around the Lake at the back of our house with five dogs - three beagles, a greyhound and my little cavalier spaniel. I haven't laughed so much in ages, watching the dogs play, and enjoying good company. A couple of months ago, I leant my copy of Healing Back Pain to one of the friends we were walking with. She has had a recurring lower back problem for a couple of years now, and just recently had a severe attack which left her almost immobilised, and in incredible pain. Her first words to me, after beginning the book were "this book is all about me". So I was very encouraged that it would work for her. On the way back from our walk, she told me that she had just spent a whole week at work with no pain whatsoever. I was so happy for her, and also even more encouraged that this could happen for me.

I am now very sure in my mind that it's Neurontin that's holding me back, and my goal this year is to ween myself off this drug. I know it's going to be tough, but I want to get back to a fuller, richer and more fulfilling life than the half-existence I have now.

Cath

 

Hello Cath

You sound to be in just the right frame of mind to taper off Neurontin and your Diazepam. I'm obviously not a doctor, but if I were you I'd taper off the Neurontin first, then the Diazepam afterwards. I didn't put everything I had been given on the list, but I couldn't tolerate Tramadol at all it made me itch like crazy !

I can guarantee you will feel tons better after you get free of medication, maybe not at first, but when everything settles down you will come on leaps and bounds I promise.

Go for it ! (slowly)

 

Hi, Mermaid. You're doing right by not having a dog since you work all day.

I had friends who worked but had two dogs and kept them in a cage all day.
I heard those dogs cry and bark all day, they were so unhappy.
They were purebred Basenjis and were only kept to win trophies for their owners.

I'm glad you enjoy your sister-in-law's terrior and get and give it love.
Besides my darling Annie I get and give love from friends' and neighbors' dogs.

 

Thank you Mermaid.
Yes, being clean is the ideal. At the onset of this, I was told that today's drugs ( Neurontin) are much better than the ones was I was taking the last time I had this. But now 3 years is long time. That is just about the same amount of time that I finally got into great trouble with drugs that last time I had the RSDS. So now I have access to custom pills of tiny increments (25 MG.)so that I can wean down very gradually. My doctor says to go at least one month with each reduction in dosage. Of course there's the fear that I might lose any ground gained by the Neurontin and have to start back at the high dosage I began with. Neurontin has never been known to cure RSDS, but rather to treat the nerve transmissions ( I think that's right, anyway) being an anticonvulsant .Normally, they combine it with an anti depressant so as to break the cycle. However, that's what got me in trouble before and so I have resisted. Sometimes I wonder if I should have given it a try earlier, but I could only stay on Cymbalta for 20 days.
Lavender
PS Some of the replies to your post are also quite revealing about drug interactions, etc.

 

Hi MiffyBunny,
That was an excellent post. Thank you! I think that one of the hardest things to do is to have compassion for ourselves. That was completely foreign to me when I began these studies. I don't want to nurture self-pity either so I'm not certain how to do so without falling into that trap.
Hoping today is better and that school is in session once again.
Lavender

 

Thanks I have downloaded the audio to my phone

 

Wow! Just wanted to say that the Bruce Lipton video just blew my mind. I come from a family of scientists. My Dad is a retired research chemist and my brother is a Principal Science Officer at one of our Universities. Not sure whether he's seen this video, but it definitely convinced me that our beliefs are instrumental in affecting our physical health at cellular level. Think I really needed this to finally change my perceptions.

Thanks for the post Steve.

 

Hi Lavender

The taper your doctor suggests sounds fine, you can always adjust it depending on how you feel. As you say yourself these medications can't "cure" you. They only buy time for when the emotional work has to be done make your TMS symptoms redundant. If you truly believe your symptoms are emotional in origin i.e. TMS, it would help you not to refer to them as RSDS, and as Steve advises try to lose the mental picture of what you think is happening at a cellular level.

You need to shift your focus from away from your symptoms towards your emotions, in order to begin to heal. If you truly believe you have TMS, try to do a tiny bit more physically, then build up slowly as you regain your confidence. Your TMS may fight back at first, so you need to be persistant until your brain gets the message that you know your body is really OK. In time you will feel better by trying a little exercise.

When I was housebound and on medication I felt like I had an mountain to climb to get well, so I understand how impossible my suggestions may seem. Now it's hard to imagine how I felt back then. You can do this, it takes perseverence and lots of patience.

I'm with you all the way.

 

Go gettem Mermaid, I see why you were shown this message. The more you help, the more deeply you too will heal.

 

Hi, Mermaid. You are a real inspiration to everyone.

The relaxing meditation audio is really good.

Neighbors are already having lawn services spread weed killing poisons on their lawns
and my sinuses are feeling the pollutants. I could take an allergy pill but prefer not to take anything
for anything, so I'm reminding myself to deep breathe more and that helps.

 

It breaks my heart every time I hear from someone else who is suffering the way Lavender is.