Severe withdrawals - Venlafaxine (Effexor) - please help!

Posted by zainahelizabeth @zainahelizabeth, Jun 13 9:51am

I started trying to withdraw from Zomorph (morphine), some months before Christmas 2023, having been on a daily dose of 160mgs for 10+ years. Everything seemed to go so well, (by this time I was on 8mgs daily), that I decided to start reducing my Venlafaxine, (aka Effexor) - (I had been on 300mgs daily for 15+ years). I started getting the usual withdrawal symptoms but coped well with them until I was on only 37.5 mgs Venlafaxine and 30mgs Zomorph daily. At this point everything fell to bits. The withdrawals expanded to include: nausea, headaches, dizziess, high blood pressure, feeling freezing and shivering, feeling boiling hot and sweating, terrible stiff neck, severe aches and pains especially in back and legs, dry mouth, feeling as though needles were being stuck into me, crawling skin, brain zaps, ‘rushing’ sound in head, irritability, mood swings, tiredness and extreme lethargy, involuntary movements of eyelids, incredibly vivid dreams (so that I don’t know what is real and what I’ve dreamed), insomnia, lack of appetite, unsteadiness, fatalistic, reduced level of concentration, impatient, now lack of sweating…The final thing, although by no means the least, is the way my skin has been affected. It exudes a liquid (?) which combines with my skin, and then hardens. Some of it makes very small areas of my skin look grey/black, brown, and some looks shiny as though ‘cling film’ (saran wrap) has been stretched over, and moulded into it. I feel as though I have a rigid mask on all the time. As it hardens, it also tightens, which pulls at the skin. It also feels as if there are ‘bubbles’ under the skin in some places. Occasionally some peels off, but then reappears. It started in patches on my face, then spread all over it. It’s now all over my scalp, in my ears, up my nose, and I think it’s literally all over everywhere else. I have tried to get it off, but it’s like trying to prise concrete off your skin; your flesh feels bruised underneath, and your skin can actually tear off with it. If I manage to break a small area up, my skin plus the ‘stuff’ is like very tough, sharp sandpaper which shreds the skin from my fingertips. My doctor has prescribed Epimax paraffin lotion and Eumovate steroid ointment for my skin; and a coal tar shampoo and Betacap steroid lotion for my scalp. None of it seems to be doing any good, and in fact all the problems seem to be getting worse. My questions are:
(1) Should I be having any treatment for any of these withdrawal symptoms?
(2) Has anyone else had this awful skin condition?
(3)If do, how did you get rid of it?
(4) Any comments please?

Interested in more discussions like this? Go to the Depression & Anxiety Support Group.

I was prescribed Effexor, an initial dose of 37.5 mg. The physician assured me that he had never had difficulty weaning patients off if the medication proved not to be beneficial. Being a strong proponent of starting at the lowest dose possible I took 1/2 of the 37.5 mg for seven days. Lo and behold- side effects started with blurred vision, constipation, asthenia (loss of muscle strength), loss of coordination, headache, light stool. So........for the next two days took 1/2 of the 1/2 for three days......no withdrawal. I wonder if physicians would even prescribe this medication if they read all the threads that have been posted of the horrors of withdrawal. I have always been very sensitive to medications and their side effects so starting at the very very lowest dose has been my practice for many years.....perhaps its my metabolism, weight (93lb) and now age.

REPLY
@kndaustin71

I was prescribed Effexor, an initial dose of 37.5 mg. The physician assured me that he had never had difficulty weaning patients off if the medication proved not to be beneficial. Being a strong proponent of starting at the lowest dose possible I took 1/2 of the 37.5 mg for seven days. Lo and behold- side effects started with blurred vision, constipation, asthenia (loss of muscle strength), loss of coordination, headache, light stool. So........for the next two days took 1/2 of the 1/2 for three days......no withdrawal. I wonder if physicians would even prescribe this medication if they read all the threads that have been posted of the horrors of withdrawal. I have always been very sensitive to medications and their side effects so starting at the very very lowest dose has been my practice for many years.....perhaps its my metabolism, weight (93lb) and now age.

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Thank you very much for your message. It’s so helpful to hear of others experiences, and to know that I’m not the only one to have had problems.
With best wishes from
Zainah-Elizabeth

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@delia74

While on Effexor, I developed high blood pressure, for which my primary did nothing except chide me to increase exercise (like it didn't matter that I taught 6 classes daily of secondary school while STANDING and circulating around the large room was not exercise, along with early morning brisk walk AND coming home to attend to my family and elderly mom!). It was her PA who became distressed at my high readings one day when my primary was not in. I had gone in due to excruciating leg pain, and she saw that I was on Effexor, and informed me that the drug is known to affect serious BP issues. Unfortunately, her solution was to take me off the Effexor and immediately start on Paxil. NOT a great idea! Meant abruptly discontinuing the Effexor. I did my homework and obtained reliably sourced info advising strongly against that, so I just continued with that drug rather than create more issues for myself. Besides, I had been for a very short time on Paxil years before and it affected me with its own set of side effects so I was not interested in returning to those. To this day, I have HBP and presently take two medications in efforts to tamper it to within my cardiologist's acceptable parameters. Life circumstances and present health concerns create valleys withe the readings. My comments are meant to advise you that there is yet another nasty side to Effexor...

In regards to what you go through in the UK in order to see your doctor(s), it does seem that the situation is more dire than what happens here. Here also there can be long wait-time on the phone, but we do have something called Call Back in which you can tell the automated recording that you want them to Call You Back. And oftentimes they do! Other times, no call. I live within a 4 minute drive to my primary doctor so I will go there in person, just as you propose to do! I will go with a letter detailing the reason(s) for needing her attention, and won't leave until her nurse comes to the front desk to personally take it to her. You do what you gotta do! I'm so sorry that you appear to have much more stress in dealing with your medical professionals. Personally, I find all of this disgraceful and unacceptable but I don't place blame on the doctors, it's the institutions that regulate how much time they can actually give each patient during an office visit, etc. Here, I have 2 doctors who are allocated NO MORE than 10 to 15 minutes per patient!! There are consequences from what an investigative reporter has discovered with his informants. On Thursday, I had an appointment with one of those doctors, and I had a great deal to get across regarding serious developments with my conditions. I found myself speaking faster and faster as I noticed her furtively glancing at her wrist watch. And my annoyance and aggravation came across in my tone. I finally told her "Here," as I handed her a 2 page print out that I had comprised, "you can learn more from what I've comprised for you since you don't appear to have enough time to attend to my concerns." She did blush, apologized and thanked me for the info which she said she would indeed read and include within her summary. I left that day with my heart racing, and the nurse had taken my pressure and it was high BEFORE the visit so I can only imagine what it read afterwards.

May I suggest that you keep a journal of sorts, detailing your experiences while tapering off Effexor (and equally valuable for other medical info and meds).
Best of luck to you. I would appreciate hearing from you and how things go for you.

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ADDENDUM: Although I wrote that "I just continued with EFFEXOR XR rather than create more issues for myself" that was the solution at that moment in time since I had no other recourse. However, about 3 yrs or so later, I couldn't deal anymore with the hallucinations/nightmares/night terrors and the physical, emotional, and psychological exhaustion resulting from all of those attacks on my being. Made an appointment with a trusted neurologist, who was alarmed with what I'd been enduring. She worked out a very carefully planned schedule for weaning me off the devil drug. It took months (as I've delineated elsewhere on this site) and I still did get some withdrawal effects along the way but my neurologist worked with me to tamper them down as much as possible. My brain actually hurt from all the stress and emotional rollercoastering. But I got through it, and finally the devil drug was no longer flowing through my system. I did feel strange for months to follow, but it was a lark compared to what I had endured for years while on the drug, and it was to be expected that there would be effects on my system from no longer feeding and stimulating it with the chemicals, etc. It was wonderful not to have to fear bedtime anymore (when frightening hallucinations would invade the bedroom, and realistic nightmares were what I dreamt). My husband was relieved that I no longer thrashed in bed, trying to fight off the evil and no longer let out strangled screams for him to come to my rescue. We both finally had rather normal nights again. Restorative sleep can do wonders to how your daytime hours play out.
I've said it before and will repeat: Effexor, in whatever form, is a horrendous drug which should be eliminated from the market. It has horrible side effects during withdrawal which should be under the supervision of a medical professional. There are warnings about suddenly ceasing this drug, for valid reasons: it can (among other things) cause cardiac arrest.
To this day, I have issues with high blood pressure (I'm on 2 medications, and at times BP is high), and have an irregular beat. I do not give advice (other than to seek assistance and supervision from a medical professional) to anyone on how to get off this drug. In my opinion, no one should be advising others on that (for any medication). Self-tapering is also a risky venture...

I'm dealing with other medical issues at this time, and am grateful not to have this drug in my life.

REPLY
@delia74

ADDENDUM: Although I wrote that "I just continued with EFFEXOR XR rather than create more issues for myself" that was the solution at that moment in time since I had no other recourse. However, about 3 yrs or so later, I couldn't deal anymore with the hallucinations/nightmares/night terrors and the physical, emotional, and psychological exhaustion resulting from all of those attacks on my being. Made an appointment with a trusted neurologist, who was alarmed with what I'd been enduring. She worked out a very carefully planned schedule for weaning me off the devil drug. It took months (as I've delineated elsewhere on this site) and I still did get some withdrawal effects along the way but my neurologist worked with me to tamper them down as much as possible. My brain actually hurt from all the stress and emotional rollercoastering. But I got through it, and finally the devil drug was no longer flowing through my system. I did feel strange for months to follow, but it was a lark compared to what I had endured for years while on the drug, and it was to be expected that there would be effects on my system from no longer feeding and stimulating it with the chemicals, etc. It was wonderful not to have to fear bedtime anymore (when frightening hallucinations would invade the bedroom, and realistic nightmares were what I dreamt). My husband was relieved that I no longer thrashed in bed, trying to fight off the evil and no longer let out strangled screams for him to come to my rescue. We both finally had rather normal nights again. Restorative sleep can do wonders to how your daytime hours play out.
I've said it before and will repeat: Effexor, in whatever form, is a horrendous drug which should be eliminated from the market. It has horrible side effects during withdrawal which should be under the supervision of a medical professional. There are warnings about suddenly ceasing this drug, for valid reasons: it can (among other things) cause cardiac arrest.
To this day, I have issues with high blood pressure (I'm on 2 medications, and at times BP is high), and have an irregular beat. I do not give advice (other than to seek assistance and supervision from a medical professional) to anyone on how to get off this drug. In my opinion, no one should be advising others on that (for any medication). Self-tapering is also a risky venture...

I'm dealing with other medical issues at this time, and am grateful not to have this drug in my life.

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Horrendous! Just today I spoke to my surgery pharmacist, who has now put me on an additional medication for high blood pressure. I’ve also been having a pounding heartbeat. The trouble is that neither he, nor my doctor has any experience with any of this, just withdrawal from other drugs. Thank you for your message.

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@zainahelizabeth

Horrendous! Just today I spoke to my surgery pharmacist, who has now put me on an additional medication for high blood pressure. I’ve also been having a pounding heartbeat. The trouble is that neither he, nor my doctor has any experience with any of this, just withdrawal from other drugs. Thank you for your message.

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Thank you so much Delia! I’ve just bought the book: ‘Maudsley Deprescribing Guidelines for Antidepressants etc’. Hopefully that will help.

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@zainahelizabeth

Horrendous! Just today I spoke to my surgery pharmacist, who has now put me on an additional medication for high blood pressure. I’ve also been having a pounding heartbeat. The trouble is that neither he, nor my doctor has any experience with any of this, just withdrawal from other drugs. Thank you for your message.

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I hope that what I shared is of some benefit. Are in the UK by chance? I'm a bit confused with how you apply the word "pharmacist" because here in the USA, pharmacists do hold medical accreditation and licensing but definitely do not prescribe any type of medication. They do advise about contraindications, incompatibility of drugs that may have been prescribed by different doctors, and definitely can be consulted about any new medication (for example: best with food or empty stomach, daytime as opposed to bedtime, what not to eat/drink). I would suggest getting the pounding heart beat checked out.

I wish that I had ideas on what avenues to pursue for locating neurologists that would have the type of experience that you require. Perhaps (if you belong to a medical practice) you can inquire there? Or do you have what we have here: organizations of specific fields of medicine --- for example, a professional directory/organization of neurologists and related fields? If so, then I would contact the organization and checkout the website, locate a CONTACT US heading and do just that: contact them (probably by email or an online form), stating that you are in search of neurologists experienced with assisting patients taper off antidepressants. You may just get a response with name/contact info for at least one such doctor. Hopefully there are several so that you might locate one within decent travel distance. This is what I do as I research, evaluate, carefully research doctors, hospitals, facilities, laboratories that I need for my unfortunately complicated medical care. Time consuming? Yes. Worthwhile? Absolutely! That is how I succeeded in locating an ocular immunologist, a highly specialized field of ophthalmological care of immune related disorders of the eyes. I did not like the indifferent attitude of the one that my ophthalmologist recommended within our county (and definitely did not want to travel 180 minutes roundtrip to a center in another state), so I searched for and found the Ocular Immunology and Uveitis Foundation. I was ecstatic! I had intensely painful bilateral uveitis (which induced glaucoma again!) and only an OI could help since my ophthalmologist admitted that he had done all that he could and an OI needed to take over. Well, I searched through the OIUFoundation website, located a Directory of ocular immunologists arranged by states, and located 4 that were within decent driving range from our town. I then checked out their credentials, education, reviews, etc. for each and chose one within a 25 min drive from our home. I was thrilled with my choice, as she was not only compassionate and thorough and treated my uveitis, but also created a tapering schedule to discontinue the prednisilone drops when the immune related eye condition cleared up. She also allayed my many fears about losing vision. I've done the same process for specialists in other fields as needed for my compounded medical issues. It helps that I did have experiences in early adulthood in neurology, immunology and medical terminology, and what I don't comprehend is looked up via wonderful Google.😊

Please google "professional associations/organizations for neurologists" and see where that may lead you. It does not hurt to try, and you stand to gain a lot to your benefit.

I wish you well, and much luck with obtaining what you need to help you in your journey.🌺

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@simon007

Delia 74 & Zainah
Hi, I live in UK. Like Delia, I have expended the past few years researching about the withdrawal , (& in my case persisting legacy effects), of Venlafaxine. I have spoken to every Senior Professor Academic & Medical UK involved in this field. Only last week a Berlin based Professor has released a report into the extent of the issues with Anti Deps. Public enemy nr 2 is Venlafaxine. Report says , (I think a conservative estimate) , 2/3 % of patients get severe withdrawal issues. In my case, I was on 75Mg VEN from April 2017. Titration off started Oct 2018. Tried over 6 weeks . Impossible = horrendous vertigo. So went back to 75mg . With Dr & Pharmacist help, it took me till Oct 2023 to titrate off , (from November 2018). And ending up, by taking beads out of 37.5 mg capsule & then crushing beads up. THEN, diluting into a pot , & syringing down @ ML degradations. You would think I was out of the woods.
NO, we are @ June 2024. STILL I get 95% of side effects.
Principally, as Delia says , **Hallucinations, nightmares, extreme tiredness, cardiac issues, breathing problems. Delia , if **these ceased after a year with you, you have done well. An official UK Bristol Uni Medical journal paper of 2022, said a two fold risk of Cardiac issues occurs with VEN, if taken over 5 yrs. I could not have titrated off slower.
It seems, from scant internet case evidence. That in extreme sensitivity cases like mine, it can take 4/5 or more years AFTER such protracted titration as mine for side / withdrawal effects to end. How you can get this after such a slow & exacting titration ?
See You Tube on Internet by the UK's (late) Ian Singleton Interview. He had personal experience of this and went on to head up the (NHS Funding for removed in Sept 2023) "Bristol Tranquiliser Project ". They had helped 1,000's of people , despirate for help, since 1985. Despite their "Bristol tranquiliser label", over 50% of there help was for NATIONWIDE UK people, with Anti-depressant withdrawal issues. There are NO dedicated such help Organisations left in the UK. All such £ resource is directed at Cat A etc Drug addiction clinics.
If anyone has had such experience as mine (& a prognosis) I am all ears.
All the best.

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Since you are in the UK, please take note of this, from Brooke Siem's emailed newsletter (available via Substack) for today:
"The IIPDW will be hosting a webinar on 28th June at 5pm BST (UK time), to discuss liquids formulations & tapering strips for psychiatric drugs: https://liquidsandtaperingstrips.eventbrite.co.uk
"Two speakers, Sarah Jones and Dr. Peter Groot, will talk for 30 minutes each about liquids, tapering strips and also DIY methods of creating smaller doses in psychiatric drug withdrawal. After this, there'll be some time for audience questions and discussion facilitated by Dr Mark Horowitz.
"If you're unable to attend on Friday, it's still worth signing up - all ticket holders will receive a link to the recordings of the talks and discussion.
"Anyone with lived experience or their loved ones who cannot cover the cost of a ticket can request a free one by emailing admin@iipdw.org."

REPLY
@njoys

Since you are in the UK, please take note of this, from Brooke Siem's emailed newsletter (available via Substack) for today:
"The IIPDW will be hosting a webinar on 28th June at 5pm BST (UK time), to discuss liquids formulations & tapering strips for psychiatric drugs: https://liquidsandtaperingstrips.eventbrite.co.uk
"Two speakers, Sarah Jones and Dr. Peter Groot, will talk for 30 minutes each about liquids, tapering strips and also DIY methods of creating smaller doses in psychiatric drug withdrawal. After this, there'll be some time for audience questions and discussion facilitated by Dr Mark Horowitz.
"If you're unable to attend on Friday, it's still worth signing up - all ticket holders will receive a link to the recordings of the talks and discussion.
"Anyone with lived experience or their loved ones who cannot cover the cost of a ticket can request a free one by emailing admin@iipdw.org."

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Thank you so much for this information, I have just contacted them.

With best wishes from
Zainah-Elizabeth Lovell

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@delia74

I hope that what I shared is of some benefit. Are in the UK by chance? I'm a bit confused with how you apply the word "pharmacist" because here in the USA, pharmacists do hold medical accreditation and licensing but definitely do not prescribe any type of medication. They do advise about contraindications, incompatibility of drugs that may have been prescribed by different doctors, and definitely can be consulted about any new medication (for example: best with food or empty stomach, daytime as opposed to bedtime, what not to eat/drink). I would suggest getting the pounding heart beat checked out.

I wish that I had ideas on what avenues to pursue for locating neurologists that would have the type of experience that you require. Perhaps (if you belong to a medical practice) you can inquire there? Or do you have what we have here: organizations of specific fields of medicine --- for example, a professional directory/organization of neurologists and related fields? If so, then I would contact the organization and checkout the website, locate a CONTACT US heading and do just that: contact them (probably by email or an online form), stating that you are in search of neurologists experienced with assisting patients taper off antidepressants. You may just get a response with name/contact info for at least one such doctor. Hopefully there are several so that you might locate one within decent travel distance. This is what I do as I research, evaluate, carefully research doctors, hospitals, facilities, laboratories that I need for my unfortunately complicated medical care. Time consuming? Yes. Worthwhile? Absolutely! That is how I succeeded in locating an ocular immunologist, a highly specialized field of ophthalmological care of immune related disorders of the eyes. I did not like the indifferent attitude of the one that my ophthalmologist recommended within our county (and definitely did not want to travel 180 minutes roundtrip to a center in another state), so I searched for and found the Ocular Immunology and Uveitis Foundation. I was ecstatic! I had intensely painful bilateral uveitis (which induced glaucoma again!) and only an OI could help since my ophthalmologist admitted that he had done all that he could and an OI needed to take over. Well, I searched through the OIUFoundation website, located a Directory of ocular immunologists arranged by states, and located 4 that were within decent driving range from our town. I then checked out their credentials, education, reviews, etc. for each and chose one within a 25 min drive from our home. I was thrilled with my choice, as she was not only compassionate and thorough and treated my uveitis, but also created a tapering schedule to discontinue the prednisilone drops when the immune related eye condition cleared up. She also allayed my many fears about losing vision. I've done the same process for specialists in other fields as needed for my compounded medical issues. It helps that I did have experiences in early adulthood in neurology, immunology and medical terminology, and what I don't comprehend is looked up via wonderful Google.😊

Please google "professional associations/organizations for neurologists" and see where that may lead you. It does not hurt to try, and you stand to gain a lot to your benefit.

I wish you well, and much luck with obtaining what you need to help you in your journey.🌺

Jump to this post

Hi, I promise this will be a quick note! Yes I am in the U.K. Pharmacists here are able to prescribe for some conditions. The one I spoke to is attached to my doctor’s surgery too, so it’s not like just walking into a pharmacy on your high street. We don’t have professional directories in the way you describe. In theory you can choose the consultant or specialist that you want to see, but you have to go via your doctor - who may, or may not, agree with you. I’ve also found out today that your doctor is not obliged to accept the consultant’s recommendations even!

I have been told this evening about a webinar to be held on 28/6 about this subject. If you’re interested, the details are among these posts; it’s the one from @njoys. Other than that, the book ‘The Maudsley Deprescribing Guidelines for Anti-Depressants etc.’ will be arriving on Wednesday. I’m praying that some help will be forthcoming from both. The Maudsley Hospital is a large psychiatric one in London.

With very best wishes for your health, and thanks from
Zainah-Elizabeth

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