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Callie

Callie: Venlafaxine XR or Effexor XR - hoping to be well someday

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peng

I am on effexor XR.  It is the chloride compound of venlafaxine, I believe.

From basic chemistry I would say that it has as much of a likeness to HCl (hydrochloric acid) as does common salt (sodium chloride.)

ie - very little.

Both your doctors believe you have cancer, but you doubt that??

I thought the US had state-of-the-art everything.  Surely you can easily find out if you do or you don't have it, Callie?

 

I have taken 2 years to reduce from 225mg effexor to 62.5mg and am still struggling a bit on many days.

Basically, you have withdrawn from four drugs including effexor in  <2 months?

That could explain absolutely everything about your suffering I would say (but I am not a doctor, merely a 72 year old retired scientist.)

Love & best wishes to you.

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Rachellynn

I had the same thing. I lost 25 pounds at 5’10 - got to 110 - i also suffer from swollen lymph nodes. Especially if i don’t move much, or try something that stimulates my immune system, it’s your body desparatly trying to detox. Dr’s know nothing - literally. I have no idea why they don’t make $20 an hour. Where are the healers? Are you feeling better?

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Rachellynn
On 6/14/2018 at 12:07 PM, peng said:

Both your doctors believe you have cancer, but you doubt that??

I thought the US had state-of-the-art everything.  Surely you can easily find out if you do or you don't have it, Callie?

Dr’s thought i had HIV - i didn’t, it was withdrawal. We have state of the art bullsh*t in the US😃

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Callie

I'll spare the details. I'm 18 months into this now. I keep experiencing more and more symptoms that point to a dysfunctioning hypothalamus. Does anyone know if hypothalamic symptoms reverse themselves? In other words, if one's hypothalamus is damaged from the drugs, does it heal?

 

Thanks,

 

Callie

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Callie

I just got a drug interaction report from Drugs.com online and discovered that the drugs I was prescribed cause major and moderate interactions. The mixture I was taking is prone to causing serotonin syndrome. I never had any symptoms of serotonin syndrome while taking the chemicals. I have been and still am experiencing some serotonin syndrome symptoms, plus a myriad of others, after the doctor rapidly tapered off the chemicals. I have been in prolonged WD now for 18+ months with no improvement, just getting worse. Really, is there any hope for healing in my case?

 

Help!

 

Callie

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Rachellynn

In my experience 18 months isn’t that long. I got really sick at the one year mark and was worse at the 18 month mark. I only started improving when i went on a low dose of remeron and then started a very devoted self care program. I think too many people forget about self care. I started going to yoga (even if i could only lay there), eating as healthy as possible. Taking carefully selected supplements including histamine support, antioxidants and minerals. I suggest following Ayurveda for your body type. I’m four years off the drug that damaged me and I’m working, doing yoga, seeing friends. I sleep and read and can find joy. But yeah, my answer to you is that many people taper for 5 years or long in order to not experience withdrawal. So it’s going to take awhile if you did a fast taper. I know it’s frusterating but start a self care routine. Morning and night and things will start to come together❤️

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Callie

Rachellyn:

 

Thank you for responding and for your reassurance. I'll look into Ayurveda. What supplements do you take for histamine support? My diet is low histamine, yet I have started itching again and breaking out with strange itchy rashes.

 

I have a very long list of symptoms, many that point to a hypothalamus issue. I am freezing cold most of the time with chills and shivering. My body apparently tries to correct itself with heat surges, but it doesn't work. I'm right back to feeling cold. I experience cold patches of skin that migrate around my body. I've had a full thyroid panel done with excellent results, so it's not my thyroid. I've read that if thyroid test results are within range, then there's something else amiss with the  hypothalamus. Also, I have not had the sensation of thirst since I went off the drugs. The only thing I drink is water even though I don't feel thirsty. I was drinking 48 oz. until a couple of weeks ago when my urine became crystal clear. This is not normal. I cut down to 32 oz. per day now, and my urine is still clear. I've lost a lot of weight, too. The hypothalamus controls the balance of body fluids and also metabolism. I seldom experience the hunger sensation either, although my stomach growls. Did you have these same symptoms when you got really sick? Please let me know.

 

I'm trying so hard to heal, but seemingly getting nowhere. I'm terribly scared.

 

Callie

 

 

 

 

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Rachellynn

I did have most of those symptoms - except i was dying of thirst. I was drinking jugs of water, peeing all the time and still dehydrated. Don’t worry so much about your hypothalamus. It’s nerves and neurotransmitters trying hard to understand how to work after being told what to do for so long. My optic/vagus nerves lost function but they are coming back.

I recommend this book: Accesing the Healing Power if the Vagus Nerve. Amazing. 

 

And take the quiz on: Banyan Botanicals, i learned that i was eating all wrong for my constitution. I need warning foods and oils and cooked only. It really will help. 

 

Supplememts: i take Hista-Block and Quercetin with Biodlavanoids. Also Nutrience is a great multi-vitamin with anti-competition formula. Just ordered some supplements from Banyan based on my constitution. I’m Vata. 

 

Meditation: use “insight timer” for as long as you can stand before getting out of bed and going to sleep. Work your way up to longer and more often. Before eating if you can. 

 

Dont “try to heal so much” instead give your body permission to heal by letting it relax. Do something you’re passionate about every day, even if only for 10 min. 

 

If if you can afford it, find an osteopathic dr. that practices visceral manipulation and body work. This is incredible. 

 

Dont be hard on yourself. You WILL heal, but this is only sort of the beginning. Much love to you!!!

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Rachellynn
Just now, Rachellynn said:

 

And take the quiz on: Banyan Botanicals, i learned that i was eating all wrong for my constitution. I need warning foods and oils and cooked only. It really will help. 

WARMING foods! Lol

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Callie

Rachellynn:

 

Wow! You sure have given me a lot of helpful suggestions, and I am so truly grateful! I'm going to look into all of it. I'll get back to you with any questions that might arise.

 

Thank you again and much love back to you!

 

Callie

 

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Callie

For what it's worth, I saw a nurse practitioner a couple of weeks ago regarding strange rashes I've developed recently.  Anyway, she told me that ADs work to deaden the senses and the nerves and when you stop taking them, the senses and nerves awaken at an incredibly high level of sensitivity. It takes time for them to return to a level of normal activity. I was totally amazed to hear this from a member of the medical community as I had previously seen roughly seven doctors who all denied there is such a thing as AD WD.

 

A few days after the office visit, I don't know how, but I did stumble on the subject of cranial nerves on the Internet. The ones involved in a lot of my symptoms are cranial nerves V (trigeminal), IX (glossopharyngeal), and X (vagus). These control the head, face, mouth, tongue, throat, and digestion where many of the strange sensations and symptoms I have are centered. For me, learning what little I have about cranial nerves has helped eased some of the anxiety I have about my weird sensations and symptoms. Right now, too, I'm thinking that time is the antidote for my AD WD disease.

 

Callie

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Rachellynn

Thank you for posting this. I have the same issues, to complicate matters - i am having pt for my neck and she dug deep and hit a nerve...it gave me a horrible reaction (vagus response) also my optic nerve is an issue. Now I’ve had craniosacral therapy which further complicated my issues. My neck is super sensitive and causes what people would call “anxiety” which is usually physiological anyway. I have burning from my throat to my chest, heavy legs, shooting pains - even up into my brain. It’s so scary - that scares me the most, the symptoms. I also think my inability to get a deep breath sometimes is nerve related. I’m not sensitive,! I’m ultra hypersensitive! I hope it goes away with time but the stress over all the sensations and symptoms is so bad for me!

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Callie

Rachellynn,

 

We do have very similar symptoms, no doubt, even though we didn't take the same drugs. Sometimes I think they're all the same drug anyway with different names.

 

I want to postscript my last post. 1) The nurse practitioner told me that one of my rashes was definitely a result of AD WD.  That one lasted 48 hours.  2) Cranial nerve XI (accessory) is also affected. That's the nerve that is in the trapezius muscle in the neck and upper back.

 

I'm in a bad way right now--a dark wave. I think all my problem cranial nerves, but mostly V and XI, go hyperactive all at once causing my debilitating symptoms. Right now it feels as if my brain is being squeezed. The head pressure is excruciating. I truly believe this is cranial nerve V signaling the meninges to compress, and boy, it's responding. There is such a thing as meningeal compression, which can also cause rashes and many of my other symptoms. Early in the summer I saw a myofascial pain therapist, and she told me there is something wrong with my dural tube, meninges, and the trigger points in my trapezius muscle (cranial nerve XI). Right now it also feels as if someone has a tight grip on that muscle and is pulling and twisting it.

 

I don't know if I'm right about any of this--just my theory. What I do know for sure, without a doubt, is that whatever the mechanics of it all are, this is all AD WD. Furthermore, if I can figure out exactly what's going on in my body with all of this, I can figure out how to relieve it. So far, no luck. The daily relentless torture I've been enduring for almost 20 months now is excruciating. I've tried all kinds of different diets--eat this, don't eat that; supplements--take them, don't take them; meditating; breath work; exercise; etc., etc., etc. Like I said in a previous post, time is going to be the healer. It's that this is so hard for me to handle day after day, and I get impatient.

 

I'll just keep praying and hoping, not just for myself, but for everyone who is hurting so terribly from the darn drugs.

 

Love to everyone,

 

Callie

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Melissa5000

Hello Callie, I am so sorry you are suffering so badly.

 

I want you to know I was covered with a rash in the winter of 2016/2017. The dermatologist took a biopt. It came back as pityriasis lichenoides chronica. I never had this before but it is a very rare skin dissease. It went away with UV light therapy. I was 5 times in an UV light booth n the hospital. Then the rash changed from purple red to light pink. The rest went away on its own. The dermatologist did not know the cause of the rash but she told me that medication could be a cause in some cases. That made me thinking because I had been tapering a lot in 2016 especially in october!

 

I can relate to your pains. I have everywhere burning pain in my muscles and tendons especially in my arms/fingers/hands/legs /feet/toes. Lately I had a setback. My skin is feeling burning/itchy and irritated, especially on my arms. When I move my arm and it rubs to my sweater sleeve it hurts. I even feel it burning inside in my throat and stomach when I drink tea! I want you to know that you are not alone!  

 

That about the nerves waking up after being drugged is what a neurologist told me in 2016 too. So your nurse and my neurologist tell the same!

 

I had the same thoughts about the talamus. The talamus is not able to regulate temperature, pain and all kinds of sensaitions. The cause must be that our brain is suddenly missing the drugs we took.  Sometimes I feel dizzy or my sight is blurry or I am forgetfull. Or I can get cryingspells over nothing or become very anxious. But those symptoms are not around all the time what makes them more bearable for me. The pains are my worst symptoms. 

 

I was out of balance this year may after a too fast taper. I was so desperate that I did an updose. That improved my situation but I was still in a very bad shape. 5 months after my updose I was hoping for some improvements. But what happened? I got a setback! So maybe we first get worse and worse before we can improve. Those are catch up withdrawals I think. 

 

I know it is very sad and frustrating that there have been no windows for a long time. But you are not alone. So this is probably "normal" for us in heavy withdrawal. 

 

I wish you are finally starting to improve and heal! Take care!

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Callie

Hello, Melissa5000,

 

Thank you so much for your post and for reminding me that I am not alone with this.

 

I saw a cancer specialist and had a skin biopsy done, too, mostly to rule out recurrent breast cancer. That area is where my rash is persistent and really the worst--all where I received radiation therapy over 21 years ago. The biopsy results were as follows: Benign skin with very mild perivascular chronic inflammation. I'm so grateful it's not cancer, but to me it doesn't give a definitive diagnosis. I have to see a family doctor next week to see if she knows what it is and how to treat it. If she can't diagnose it, then it's on to a dermatologist. I really appreciate your letting me know your diagnosis as I am going to mention it to her next week. Mine could be the same thing. It just won't go away, and it's been at least two months now. I've tried all kinds of topical creams:  Cortinsone, Allegra, Benadryl, calamine lotion, eczema lotions, apple cider vinegar, anti-itch creams with oatmeal, Calendula cream, coco butter oil, olive oil, and baking soda paste. The only one that helped relieve the itching a bit was Benadryl cream, but within the last few days that stopped working. I'm so glad you mentioned the ultra-violet light as it might take something out of the ordinary like that to eradicate this rash. What I fear though is the doctor writing a prescription for some oral drug. I feel intense terror at the thought of that.

 

On 12/2/2018 at 10:44 AM, Melissa5000 said:

My skin is feeling burning/itchy and irritated, especially on my arms. When I move my arm and it rubs to my sweater sleeve it hurts.

I'm so sorry you have to experience this, Melissa5000. I know exactly what you're talking about as I've been dealing with the same. It's bad enough in the summer with short sleeves as the air is even irritating, but the winter months with long sleeves are torturous. I only have a few really soft long sleeve tops I am able to somewhat tolerate and then I have to wear them inside out as I cannot tolerate the seams rubbing against my skin, not to mention the fabric itself. The only time of day I feel the least uncomfortable with this symptom is in the evening when I rest on the couch, watch TV, wrap my arms in a soft modal cotton sheet, and don't move at all.

 

On 12/2/2018 at 10:44 AM, Melissa5000 said:

That about the nerves waking up after being drugged is what a neurologist told me in 2016 too.

We can only hope that the entire medical community will become enlightened someday soon, believe in our plight, and help us heal--without drugs though.

 

Thank you again! Pleasant, healing thoughts to you from me.

 

Callie

 

 

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Melissa5000
On 10/18/2018 at 7:59 PM, Callie said:

I am freezing cold most of the time with chills and shivering. My body apparently tries to correct itself with heat surges, but it doesn't work. I'm right back to feeling cold. I experience cold patches of skin that migrate around my body. I've had a full thyroid panel done with excellent results, so it's not my thyroid.

 

I have this too! I am often very cold. I walk around in thick winter clothes. Especially my feet and fingers can freeze. Suddenly my entire body is very cold and I have to shiver all over! Then a few minutes later I get burning hot! Sometimes one part of my hand is very cold like ice, my fingers burn and another part of the same hand burns. Very strange! Or my back and torso is very cold and my arms and hands burn. 

 

This summer my general practioner did some bloodwork and he also checked the thyroid. My thyroid is perfectly normal. 

 

Pug had also problems with hot and cold and he wrote his succes story. He had big improvements. I don't know if you read his succes story, but it is in the succes story section here on SA: Pug, your miracle is comming! 

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Rachellynn

Well...i keep going low in Potassium which helps nerves and muscles which explains the weakness, anxiety and shooting pains. Try getting 4700 mg per day for a month from Whole Foods - we’d probably heal up quick! Can’t wait to track this. I’ve been going low on potassium since i stopped Prozac. 

 

Also following an ayurvedic diet has warmed me. 

 

Have you checked antibodies for your thyroid? My numbers are “normal” but i have hashimotos. GP’s literally are zero help. They don’t know about health and healing - they only know about prescribing chemicals to cover up symptoms. Sorry!!!

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Callie
On 12/8/2018 at 8:11 PM, Melissa5000 said:

I don't know if you read his succes story, but it is in the succes story section here on SA: Pug, your miracle is comming! 

 

Yes, Melissa5000, I read Pug’s recovery story. I printed it out. I read it often and keep up to date on any new posts on his topic. He also recommended following Baylissa’s website, which I do. He’s a treasure, and if it weren’t for Pug, Baylissa, and others like you that share and offer support and encouragement, I don’t know if I’d be able to make it through this. I’m just so sorry that any of us are experiencing this relentless torture.


Just want to note that my rashes are improving. I’m using Aquaphor Healing Ointment now, which is really just petroleum jelly, and they are fading. I finally saw my new regular doctor who said it’s all just dermatitis. I attribute it and all these other horrid symptoms to WD even though this new doctor didn’t. She told me there is no such thing as WD, psychiatric drugs do not affect the brain at all, and diagnosed me with somatization of anxiety. I am livid!!! I am not going back to her and going to see if my insurance company will let me see the nurse practitioner from now on instead. I saw her previously, but she works with a different doctor at an entirely different office. She had validated that AD WD truly does exist.

On 12/8/2018 at 8:55 PM, Rachellynn said:

Have you checked antibodies for your thyroid? My numbers are “normal” but i have hashimotos. GP’s literally are zero help. They don’t know about health and healing - they only know about prescribing chemicals to cover up symptoms. Sorry!!!

 

Yes, Rachellynn, you are so right! GPs just don’t get it. Sometimes I wish there was a way that all doctors could experience just for five minutes what we are going through. They’d probably all start crying for their mommies! It would certainly make believers out of them, for sure.


 

I don’t know much about Hashimoto’s. Is there a special test for it? I did have antibodies checked last March, and they were within normal limits.


 

Well, healing thoughts to the both of you, and thank you for your input.


 

Callie

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Rachellynn
36 minutes ago, Callie said:

no such thing as WD, psychiatric drugs do not affect the brain at all,

 

See...what?! What DO they effect then? The nurse practitioner i just saw admitted that psychiatric drugs are not good (should be extreme last resort) and change the brain but still told me to “get over it” and see a therapist. As if that helps. 

 

Im going to look up Pug and Baylissa too. I was doing pretty well until a physical therapist pushed on a spot in my neck and i went into shock. My poor hypersensitive nervous system. Trying to build resilience through many modalities. 

 

We MUST kick this things butt!!❤️

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Callie

Rachellynn,

 

It does seem as if nurse practitioners know more about our plight than doctors, but I'm so sorry to hear that she said to you what she did. People are so callous at times. Listen to me and know that you did not deserve to be told that. Shame on that nurse practitioner!

 

26 minutes ago, Rachellynn said:

a physical therapist pushed on a spot in my neck

 

I can't say for certain in your case, but in mine I have hyperactive trigger points in my neck and upper back. I really think that they have a connection to cranial nerves. I consider it as being neuro-muscular. I'm still trying to figure it all out. I was getting help with it from a myofascial pain therapist but had to stop going as it was expensive. Insurance doesn't cover those medical practitioners that can help.

 

34 minutes ago, Rachellynn said:

Im going to look up Pug and Baylissa too.

 Yes, see Pug's topic on this SA site: Your miracle is coming, hang on!

And Baylissa is at https://baylissa.com/

 

Hang in there, Rachellynn! We'll all make it out of this tunnel eventually.

 

Callie

 

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Callie

Melissa5000:

 

I must restate what I said quoted below:

1 hour ago, Callie said:

...if it weren’t for Pug, Baylissa, and others like you that share...

 

I meant to say "if it weren't for Pug, Baylissa, YOU Melissa5000, and other like you..."

 

Forgive me, please!

 

Carol

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Rachellynn

I think especially my vagus nerve (optic too) and especially on the left side. My neck is VERY sensitive! I have some arthritis there too.

 

Dr’s are so difficult in this situation. I’ve been to the ER for various symptoms and they can’t really help and neither can PCP so I end up feeling so all alone in this. 

 

im so excited to get to that light🥰

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Rachellynn

Is there a letter somewhere to bring to Dr’s to help them understand what we are going through? Does that exist anywhere?

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Callie
On 12/12/2018 at 8:31 PM, Rachellynn said:

Is there a letter somewhere to bring to Dr’s to help them understand what we are going through? Does that exist anywhere?

 

You know, Rachellynn, I had seen that on SA. I had searched for it since and cannot find it. If I happen see it again, I'll let you know.

 

Callie

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ChessieCat

This might be the one you are thinking of. 

 

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Rachellynn

Yes! Thank you so much. You are amazing❤️🙏🏼🙏🏼🙏🏼

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