Myths and medication

[Mermaid]

Hi Everyone,

This week I've joined a couple of threads where the topic of withdrawal from medication had arisen. Like many of you I have been prescribed a candy store of drugs over the years. I have been medication free for 2 years now, and would like to share my experience with you. I obviously have no medical training, I can only pass on my thoughts on what happened to me. I am not anti-allopathic medicine at all, that would be ridiculous. What I would like to see changed however, is the irresponsible way drugs are prescribed.

When a person has had a bad experience with a medication, we always seem to shy away from telling the whole story, so not to "scare" anyone who is taking it or about to withdraw from it. I know, I do it myself. However, this presents a problem. How is the truth ever going to come to light, if we go "under ground" about the havoc they can cause.

I won't bore you to death with this but, my TMS started as frequent migraines almost immediately after leaving an abusive marriage. I was given Zomig which helped for a while, then after a time it became ineffective. I was having them about 2-3 times a week, then I had a car accident. You guessed it - whiplash - a gift to TMS, something else to play with. I ended up seeing three different neurologists, all the time getting worse and worse until I got the dreaded fibromyalgia diagnosis. Below in no particular order, are the drugs I have been on, the ones in bold type are the long term ones :

Neurontin (Gabapentin)
Lyrica (Pregabalin)
Prednisone
Tegretol
Amitriptylene
Zonegran
MST
Verapamil
Celecoxib
Valium
Zyprexa
Fentanil
Some stuff they give you for Parkinsons, I forget the name.

All that for a "disease" with an unknown cause. Most of the drugs on my list are "thought on act on blah, blah". They don't even know how they work for goodness sake!! I had so many weird side effects, it was very challenging.

When you are doped up to the eyeballs on all this stuff and still in agony, you lose the power of rational thought and become even more vulnerable, so the cycle continues.

I got absolutely zero help from every one of the doctors I saw. I was advised that I would never get well, the only way to lead any sort of life would be to try every medication they could through at me in the hope of finding "the one" . At this stage I'd had enough, I felt like a lab rat, so in the end I just came off everything very, very slowly. I did experience withdrawals, but I just had to live through it.

It was during withdrawal that I discovered TMS, thank God. Bless you Dr.Sarno you saved my life.

TMS pain results from an over reactive ANS, to cause further imbalance by using such medications as Lyrica is never going to help in the long term, it's just buying time. If you check out the side effects of this type of drug and the subsequent withdrawals, they are just the same as TMS and fibro, no coincidence.

Detoxing my body of medication was the best thing I ever did. What I will say though is that when I was in so much pain it made cry, I would take codeine very sparingly to help me through in the short term.

As you know we are all very different when it comes to medications, and I can't stress enough that what happened to me does not happen to everybody.

I am a whisker away from being totally back in balance with TMS healing. I will give all the help I can to anyone else trying to find their way out of this maze. Go slowly, slowly be kind and compassionate to yourself and you will triumph in the end believe me.

Thank you all for the loving support and encouragement you have given to me.

I love you all XX

 

[Lavender]

Thanks for this post Mermaid. I am reading this on a day when I really need some hope. I have been
on Neurontin for RSDS for 3 years now, with a rare ½ Oxycodone for “breakthrough” pain. It is not understood whether my severe back and leg pain is the RSDS or spinal stenosis since the RSDS pain is all over me now. On the worse days I have Allodynia, the sensitivity to touch, even to upholstery and some types of clothing. I have read that antidepressants are given for allodynia.
I use a rolling office chair to get into my kitchen and really my life and independence have been stolen from me so I am getting quite desperate to get better .Perhaps desperate enough to try an additional drug.
I am having difficulty even remembering what experiencing real life was like. The burning pain is constant. Just being able to walk normally and without pain would be wonderful. That’s the part of the TMS prescription that I cannot persevere through.
Although one orthopedist disagrees, my family Dr. thinks that the inability to walk straight and without the pain is the RSDS. It feels so very structural though. The upper body pains can not be explained as any thing rheumatic.
Granted, I have lowered the daily dose of Neurontin gradually. I am small and am extremely sensitive to medications.
Side-effect-Suzy.
Dr. feels it is the “sympathetically mediated nerve pain” of RSDS and has tried valiantly to “break ‘ the chronic pain cycle. I have resisted many drugs after researching them and he understands. He has been with me through thick and thin as I had RSDS for 3 years, 20 years ago.
( I was fine for the next 20 years until this happened after experiencing 4 major stresses along with a minor physical injury)
This good and caring man (unfortunately retiring soon) did come up with something that helped me to avoid absorbing the drugs systemically. He had a compounding pharmacy make up the drugs into a cream that can be rubbed on 3x daily, but they don’t replace the oral Neurontin. However this is “out of network” for insurance so this course of action is very expensive and bit less effective.
Neuortriptilyne ( Sp?) is now waiting in the wings but I wanted to exhaust the TMs and mind-body approach completely before going there. Dr. said that he has had success with other chronic pain patients doing so, but not RSDS. After many unfeeling in- and- out appointments with “specialists,”
I have decided to put my trust in him since he saw me through it before. It’s just that as one gets older the chances for remission are almost nil. Thus my sadness.
So that’s where I am at. The last time I had this, I was on Tegretol, amitriptyline, Elavil, and others that were tried. Back then we finally were faced with having to stop suddenly. There was no choice; I then went on a neurological tailspin for 8 months from the abrupt withdrawal. I am the typical TMS profile, and although still working at it, have exhausted all the books and methods etc. Now I am reluctantly considering the addition of this drug but cautious since they are hard to come off of.
Again, thanks for the blessing of your post. Every bit of info helps readers with their decisions.

 

[Steve Ozanich]

I've been doing this for 12 years and that's one of the most powerful posts I've ever read. If I'm the man, you're certainly the woman Mermaid (well, half woman half fish). You can't imagine how much you've just helped, so many people. Most of the emails I receive are asking questions that you just answered. You are a shining light.

I don't know if it will make you feel any different now but your list of meds isn't that long compared to some I've seen. But you sure went through the ringer of doctors, only to get flattened further by so-called healers.

Nuerontin is the real damager. That one is messing people up good, for no reason. But it can be dropped slowly and safely; but the will has to be there. You can't buy will-power from a drug, it comes from deeper within.

Stenosis does not cause pain, and RSDS is something they just made up, it's a mindbody reaction. The RSDS folks are healing that find TMS, and can get past the notion that their bodies do not have some special disease going on. They have severe TMS, they need to treat it as such.

Mermaid when you get your last whisker in place contact me. Your about to heal a lot of people.

Steve

 

[Lavender]

Steve, as to your last statement about RSDS, I agree, but just how when one has applied themselves to TMS wholeheartedly? The reaction of the glial cells began, but it appears there's no way to turn them off! I have been working at this with the TMS path since June. It makes complete sense to me that the knowledge alone of the source would be enough for the cure. Yet I have never seen the results that some people report when I "talk" to it, nor can I ignore it so as to walk. I continue to worsen when I do. A very good Charlie Rose PBS interview- Subject: Pain with RSDS experts. The mind body thing was dismissed quickly as saying that the depression comes as a result of it but not caused by any psychological cause. Hmmm!
Lavender
P.S. Enjoyed your recent interview available on the forum.

 

[miffybunny]

Hi Lavender,
I was wondering if you saw my post to you in the "question for Forest thread"? (it's at the end of the thread) I think I addressed some of your concerns and I hope it can be helpful if you haven't read it yet. I totally completely understand your frustration and doubt, as I suffer from the same types of symptoms. I urge you to listen to Steve rather than the "experts". He has lived through more than most would through three lifetimes. I grapple with negative thoughts and get triggered by the changing colors of my feet or seeing other patients with RSD in waiting rooms. It has been much more difficult to wrap my head around this condition as compared to my previous bout with TMS (muscle spasms in legs and lower back) but I still believe it can be reversed. I plan to stay on the Nortryptiline for as long as I need it because it falls into the category of antidepressants. It's not a pain killer or anti seizure drug so I'm not worried about withdrawal. I consider it to be one tool in my tool box. It allows me think better and respond rather than react to daily challenges. Emotional chaos just perpetuates the pain cycle for me. It doesn't make me feel foggy or drunk like Lyrica (or Neurontin) or give me awful side effects (I have been on more meds than Mermaid and her list is not shocking to me at all ). I believe our bodies (which includes our brain) need to catch up with our shift in perspective and beliefs. Don't get caught up with "glial cells" etc. There is so much that medicine and science still don't know!....
MiffyBunny

 

[Lavender]

Hi Miffybunny, Do you mean the information regarding the Nortryptiline? Or perhaps was it a reply to a 'personal conversation" I had sent to you?Please forgive, but I this is my first time participating a forum and I still am not finding my way around correctly. Actually, I am not having side effects from the Neurontin except eyelid problems and that day at the ER in 2010 when I was diagnosed and it was prescribed, well, I don't know how I could have made it through without it. I am now on a very low dose, 100 mg 3x daily. But when one neurologist was treating a flare up, she prescribed an increase and it did get me out of deep trouble. Ever since my experiences 20 years ago, I am now one to "duke it out" as long as possible without additional medications. It was the antidepressants that did me in. Even with this present episode, I sampled Cymbalta for 20 days and had to wean off ASAP. Your good feedback about Nortryptiline has played a part in allaying my fears of taking it, I guess I am still stubborn as I keep thinking that my recovery is just around the corner. The thing that perpetuates my pain is that I am unable to ignore it. I do take all kinds of measures in the attempt to provide any escape from thinking about it.
Being incapacitated by it constantly reminds me whenever I go to get up and walk, it says, "Here I am,"( still) or "No, you can't do....( whatever.)
Thanks again
Lavender

 

[miffybunny]

I had responded to you on a thread called "Question for Forest" but no worries. Basically I think it comes down to shifting your focus of awareness from moment to moment. If you resist the pain or try to ignore it you are actually reinforcing it. The key to disabling the pain strategy is in a sense making friends with it. While you are accepting it in the moment, shift your awareness from the pain to what you are feeling emotionally and how you are BEING. The more you practice this, the more the pain will gradually recede. Since Rome wasn't built in a day I can assure you I don't feel any conflict re the Nortyrpt. I am small and highly sensitive as well, but I can honestly say it helped normalize and calm my brain down so that I could start the process of integration. When you are in such turmoil and despair, it's impossible to focus your awareness. It's a mild antidepressant that's been around for a million years. If someone was taking Cellexa for ex, for depression or anxiety and it helped them get over a hump what is there to judge? It all depends on the type of medication and the reason behind taking it. The only way to get through this in my opinion is to go very deep within yourself. I'm so disconnected from my feelings half the time I think I'm "feeling nothing". That's where the real work comes in. Constantly shift your focus to what you can do as opposed to what you can't, no matter how small. Over time your thoughts build momentum into a more hopeful attitude. Believe me I know it is
not easy!!! But it is a choice. That's all we have at the end of the day. The RSD used to terrorize me and make me feel like a victim but I'm starting to view it as annoying. I don't want to give it power over me. We are both far bigger than our physical conditions and I believe that the body wants well being. It's a process of allowing rather than fighting. I hope this makes sense! (i'm a little bleary eyed so late at night)
MiffyBunny

 

[Ellen]

Mermaid,

Thank you for your post. I have been on many of the same medications you list, as well as a few more over the last 20 years. Since withdrawing from all medications I have made incredible progress in healing. Though withdrawal was very hard, like you I am almost able to say I am completely healed. I dont believe I would have come so far if I hadnt stopped all medication. So I agree, it is a critical step in healing from TMS, but everyone must figure out for themselves how best to go about it.

 

[Mermaid]

Mermaid,

Thank you for your post. I have been on many of the same medications you list, as well as a few more over the last 20 years. Since withdrawing from all medications I have made incredible progress in healing. Though withdrawal was very hard, like you I am almost able to say I am completely healed. I dont believe I would have come so far if I hadnt stopped all medication. So I agree, it is a critical step in healing from TMS, but everyone must figure out for themselves how best to go about it.

Ellen, what a superb post. I couldn't agree more with what you say. I too have been on more medications that I have listed, they're just the ones I remember, possibly because they caused the most damaged. The rest just did nothing at all. I truly believe that if I hadn't been given all that stuff TMS wouldn't have gotten such a strangle hold on me. At my worst I was very, very sick as you will know from your own experience. Someone needs to stand up and say that medications escalate symptoms and can in fact cause them. May as well be us !!

 

[Mermaid]

Thanks for this post Mermaid. I am reading this on a day when I really need some hope. I have been
on Neurontin for RSDS for 3 years now, with a rare ½ Oxycodone for “breakthrough” pain. It is not understood whether my severe back and leg pain is the RSDS or spinal stenosis since the RSDS pain is all over me now. On the worse days I have Allodynia, the sensitivity to touch, even to upholstery and some types of clothing. I have read that antidepressants are given for allodynia.
I use a rolling office chair to get into my kitchen and really my life and independence have been stolen from me so I am getting quite desperate to get better .Perhaps desperate enough to try an additional drug.
I am having difficulty even remembering what experiencing real life was like. The burning pain is constant. Just being able to walk normally and without pain would be wonderful. That’s the part of the TMS prescription that I cannot persevere through.
Although one orthopedist disagrees, my family Dr. thinks that the inability to walk straight and without the pain is the RSDS. It feels so very structural though. The upper body pains can not be explained as any thing rheumatic.
Granted, I have lowered the daily dose of Neurontin gradually. I am small and am extremely sensitive to medications.
Side-effect-Suzy.
Dr. feels it is the “sympathetically mediated nerve pain” of RSDS and has tried valiantly to “break ‘ the chronic pain cycle. I have resisted many drugs after researching them and he understands. He has been with me through thick and thin as I had RSDS for 3 years, 20 years ago.
( I was fine for the next 20 years until this happened after experiencing 4 major stresses along with a minor physical injury)
This good and caring man (unfortunately retiring soon) did come up with something that helped me to avoid absorbing the drugs systemically. He had a compounding pharmacy make up the drugs into a cream that can be rubbed on 3x daily, but they don’t replace the oral Neurontin. However this is “out of network” for insurance so this course of action is very expensive and bit less effective.
Neuortriptilyne ( Sp?) is now waiting in the wings but I wanted to exhaust the TMs and mind-body approach completely before going there. Dr. said that he has had success with other chronic pain patients doing so, but not RSDS. After many unfeeling in- and- out appointments with “specialists,”
I have decided to put my trust in him since he saw me through it before. It’s just that as one gets older the chances for remission are almost nil. Thus my sadness.
So that’s where I am at. The last time I had this, I was on Tegretol, amitriptyline, Elavil, and others that were tried. Back then we finally were faced with having to stop suddenly. There was no choice; I then went on a neurological tailspin for 8 months from the abrupt withdrawal. I am the typical TMS profile, and although still working at it, have exhausted all the books and methods etc. Now I am reluctantly considering the addition of this drug but cautious since they are hard to come off of.
Again, thanks for the blessing of your post. Every bit of info helps readers with their decisions.

Hi Lavender,

You poor thing, I feel your suffering. Please don't give up hope, you can get well again. I had severe allodynia when I was on Neurontin, it gradually disappeared after withdrawal.

Steve's right you have TMS, with medication side effect complications just as Ellen and I did. If you tough it out through withdrawal, and keep working on TMS healing there's a whole new world waiting for you at the other side, I promise. Obviously it's entirely your decision and I can't presume to tell you what to do, but I would strongly advise against adding any more medication, it's not the way to health. When I was at the stage you're at I asked myself, "have the medications I've taken so far improved my health and sense of wellbeing", the answer was a huge NO, so I weaned myself off everything. It took over a year, but it was the best decision of my life.

You have my love support and understanding whatever you decide.

 

[Mermaid]

I've been doing this for 12 years and that's one of the most powerful posts I've ever read. If I'm the man, you're certainly the woman Mermaid (well, half woman half fish). You can't imagine how much you've just helped, so many people. Most of the emails I receive are asking questions that you just answered. You are a shining light.

I don't know if it will make you feel any different now but your list of meds isn't that long compared to some I've seen. But you sure went through the ringer of doctors, only to get flattened further by so-called healers.

Nuerontin is the real damager. That one is messing people up good, for no reason. But it can be dropped slowly and safely; but the will has to be there. You can't buy will-power from a drug, it comes from deeper within.

Stenosis does not cause pain, and RSDS is something they just made up, it's a mindbody reaction. The RSDS folks are healing that find TMS, and can get past the notion that their bodies do not have some special disease going on. They have severe TMS, they need to treat it as such.

Mermaid when you get your last whisker in place contact me. Your about to heal a lot of people.

Steve

Thanks for your kind words of encouragement once again. It's down to you that I got off the starting block with TMS healing as you know. I doesn't really matter to me when the last bits of lingering stuff disappears, I'm already healed because I don't care about it anymore. I plan to stick around and shout about TMS from the roof tops in the knowledge that the tide will eventually turn. I've seen to many people suffer in ignorance behind their egos to let this rest.

 

[Steve Ozanich]

Lavender, you said much in a short paragraph, I'll try to respond before Easter dinner starts,

When you say that a cell reaction has begun and won't turn off, that's a guided image. That means, it's a perception you have, which then becomes a deep belief. Your cells now alter to match your belief. Before the pages of my book began I placed 3 quotes on the inside cover, one by Rohr, one by Lipton, and one by yours truly. Lipton's is in the center for a reason. He is one of the eminent cell-biologists in the world who has been treated poorly like Dr. Sarno in the industry for some of his amazing discoveries. God help those who stand for truth.

Your beliefs alter your cells, they determine what signals are sent to the cells and how those cells will react. If I can find a video for you I'll post it below. We are not determined by our cells, they are determined by our perception of our environment; environment being belief. So when someone like Dr. Sarno comes along and tells everyone, "hey your body is ok, you only think it is broken," the people who believe him begin to heal, those who have doubts continue to struggle.

Also---you are only in the beginning stage of healing, June is not that long of a time for healing from a debilitating disorder. But, you also appear to have been on the wrong track in healing. Knowledge alone is only sufficient in a small number of cases. It takes a hell of a lot more than knowledge to heal in most people. It takes a life change. I've posted here before about my good friend who caught his wife in bed with a guy in Vegas (apparently what happened there didn't stay there). He got cancer of his corneas within a short time. He didn't want to "see" what he had seen and so his body reacted to accommodate his deepest desire. His brain did him a favor to help him avoid his deep heartache; it gave him something to worry about instead of feeling the anger and frustration, and sorrow. He quickly ran away from his stressful job and horny wife and moved back here to Ohio to the country, among the soft wind and sun, to work on a farm. His surgeon at The Ohio State University is amazed that his cancer is now gone. He told my friend, "whatever you're doing keep doing it!" He's now free of all disease. He had to change his life and get out of the boxing ring that was causing him deep pain and disharmony. He had to reconnect with nature and begin to send new signals to his cells much like Shin Itchero Terayama did. You have to send new energy to your cells, and begin a new life-perspective. You have to begin to see through "new eyes."

Miffy is correct, don't get caught up in what so-called experts say. They're experts in everything, except in how to heal people. They can scientifically describe everything in a erudite manner, but they can't help anyone, because healing comes from within and they're looking to treat people from the outside. By the way Miffy, your language has changed, you sounded upbeat and moving in the right direction. That's the beginning of healing, good job! I'll always remember how soft and sweet your voice was. That's the problem; you want to scream, but superego says be good and quiet, thus, conflict in a mind divided. The real Miffy is screaming to express herself, but she feels she cannot------yet.

Those Charlie Rose "experts" are wrong! Depression comes first and THEN symptoms, just like with pain. Then of course the cycle begins and depression worsens from the symptoms. But your brain is doing you a favor to avoid sensing how depressed you are. So it gives you a body problem to divert you toward body, and away from a life that is not going as you had planned. To quote the sage, "if you stay on the path you are on, you will get where you are headed."

Change paths to heal. The one you are on is not taking you where you want to go. Self-deception means that you have convinced yourself that the lie is the truth. Wherever you feel your life is ok, that may be the core of the problem. Ego is at the heart of all of our life-problems. I don't know you or where you're from. Me don't know nothen; but I have lived.

Mermaid it's time to meet you. If you can find a skype camera and a bottle of liquor let's talk. You can help many many people. You not only were burned by the fire and grew from it, you also have the ability to communicate well.

Steve

 

[Steve Ozanich]

Here ya go:

 

[Walt Oleksy (RIP 2021)]

These exchanges about cells and pain are fascinating.

I watched someone on tv a few nights ago who gave examples of people who got cancer
AFTER experiencing some emotional trauma. Dealing with the trauma healed them.

I'll watch the video now.

 

[Mermaid]

Here ya go:

Thanks for posting this. I've read "The Biology of Belief" by Bruce Lipton it was fascinating. Candace Pert's work is in a similar vein, her "Psychosomatic Wellness" CD has a great mindbody healing guided meditation, which I found very helpful.

 

[Mermaid]

These exchanges about cells and pain are fascinating.

I watched someone on tv a few nights ago who gave examples of people who got cancer
AFTER experiencing some emotional trauma. Dealing with the trauma healed them.

I'll watch the video now.

Hi Walt,

I can think of a couple of examples of this among friends and family. It is an absolute fact that our emotional health in entwined with our physical health.

Happy Easter

 

[Walt Oleksy (RIP 2021)]

I'll watch the Bruce Lipton video soon as I can.

Happy Easter to you, too. I'm having friends here for a ham dinner. Of course Annie gets some. She loves ham.

 

[Mermaid]

Mermaid it's time to meet you. If you can find a skype camera and a bottle of liquor let's talk. You can help many many people. You not only were burned by the fire and grew from it, you also have the ability to communicate well.

Steve

I don't have a Skype camera at the moment, I'll look into it though (that's dreadful, sorry !) It would be great to talk.

Happy Easter (don't eat too much chocolate!)

 

[Mermaid]

I'll watch the Bruce Lipton video soon as I can.

Happy Easter to you, too. I'm having friends here for a ham dinner. Of course Annie gets some. She loves ham.

I adore dogs, your Annie looks like a real sweetie. I'd love to have one of my own, but we're both out at work all day, so it's not possible at the moment. I have to content myself with walking my sister-in-law's terrier. Every time I see him he just makes my day, I love him to bits.

There's a big dog shaped hole in my life

 

[Richsimm22]

Out of all the medications listed the only one I used is amitriptyline. Im not one for medications I fear addiction. But I was on them for a few years and I actually feel better now im off them. I was feeling very low while coming off them like. The only thing I think they helped me with was a good night sleep.
Since then I have discovered meditation and cant get through a session without falling asleep.