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.

@njoys

I recommend reading: "The Maudsley Deprescribing Guidelines: Antidepressants, Benzodiazepines, Gabapentinoids and Z-drugs" by Mark Horowitz and David Taylor, published February 2024.
I gave copies to my doctor and pharmacist.

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Thank you very much for the recommendation. I’m about to look it up.

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@zainahelizabeth

Thank you for your message. I am supposedly under the care of my doctor, but getting to see her is difficult. She seems to prefer phone consultations for one thing, and also makes appointments more than six weeks apart. My blood pressure has risen for example, and an appointment was made for me to talk to the pharmacist on 24th June, which was about four weeks ahead at that time. As far as the next appointment with the doctor is concerned, when it was found that I needed a slight adjustment to a thyroid medication, she said I’d need a blood test to check it in four - six weeks, that she would look out for the results, and phone to discuss everything then, when she had them. The blood test appointment has been made for 26th June. As everyone in the U.K. is discovering, you can sit waiting on the phone to a G.P. surgery for literally hours, waiting for the call to be answered. If given an appointment, it’s quite often not even with a doctor. The strange thing is that I didn’t seem to have any withdrawal symptoms at all until I was down to 37.5 mgs daily, (which took about six months). I sailed through until then. In my efforts to see someone, I’ve now tried writing an urgent letter to my G.P. She was supposed to be the duty doctor on Friday, (she had made a point of telling me that she would be there on most Fridays). Unfortunately I heard nothing. I am now hoping for a response tomorrow. If I don’t get one, I shall be resorting to turning up at the surgery, and refusing to leave until I’ve been seen by a doctor. I don’t know what else to do.
Thank you so much for your thoughts, concern, and good wishes.

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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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@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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Hello Delia(?), I used to always have low blood pressure too; but until fairly recently needed two medications to keep my high blood pressure under control. Now I’m just on Lerconidipine once a day. When I speak to the pharmacist though, I wouldn’t be surprised if I end up back on two again. My pulse always used to be in the low sixties and now is 90. I am keeping a note of my B.P. every day; perhaps I’ll expand to putting a lot more down from now on. Thank you again for all your help!
Zainah-Elizabeth Lovell

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@zainahelizabeth

Hello Delia(?), I used to always have low blood pressure too; but until fairly recently needed two medications to keep my high blood pressure under control. Now I’m just on Lerconidipine once a day. When I speak to the pharmacist though, I wouldn’t be surprised if I end up back on two again. My pulse always used to be in the low sixties and now is 90. I am keeping a note of my B.P. every day; perhaps I’ll expand to putting a lot more down from now on. Thank you again for all your help!
Zainah-Elizabeth Lovell

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Just to let you know, the letter to the doctor worked! I have an appointment at 9.45 tomorrow morning. At least that’s step 1!

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@zainahelizabeth

Hello, thank you very much for your message, and advice. It was a relief to hear someone suggest a partial increase in my dose. In my research I’ve seen it said that you could only get rid of withdrawal symptoms by going back on your whole initial dose. For me that would be 300mgs daily. It’s been so wonderful to have a clear head that I can’t bear the thought of being so sedated again. I couldn’t ever say either that I wish I’d never taken venlafaxine - I wouldn’t be here now if I hadn’t it. I couldn’t go back to that situation, so if I had to go back on the venlafaxine because my depression etc. came back, that would be one thing. I’d find it hard to go back because of the withdrawals though. If only it was easier to see doctors in the U.K.! I have a telephone appointment with the pharmacist booked for 24th, and one with the doctor a few days later. Yesterday my husband took a letter in to our doctor, to tell her how much things have worsened. Now we must wait to see if she says anything. In the meantime I may well do as you suggest. Thank you again.
Zainah-Elizabeth Lovell

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I had to give up and go back on Effexor after 6 weeks of not sleeping, by that I mean 2–4 hours of sleep max a night. The sleep deprivation made me crazy!!

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Thank you for your message! I saw my doctor a few days ago; she thinks that all my problems are too much, and that I should go back on the venlafaxine. I was originally on 300mgs daily, managed to get down to 37.5 mgs, and at the moment I’m on 112.5 mgs daily. I’m still having all the withdrawal symptoms although they seem better. I just hope I don’t have to keep putting the dose up, until I’m back where I started.

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@zainahelizabeth

Thank you for your message! I saw my doctor a few days ago; she thinks that all my problems are too much, and that I should go back on the venlafaxine. I was originally on 300mgs daily, managed to get down to 37.5 mgs, and at the moment I’m on 112.5 mgs daily. I’m still having all the withdrawal symptoms although they seem better. I just hope I don’t have to keep putting the dose up, until I’m back where I started.

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Zainahelizabeth, I am not surprised your Dr advised you to go back to revert dose. When I went from 75mg to 37.5 mg over a few weeks, I had problems like you. INTERNET advice told me to go back to original dose & start again - which I did. Everyone is different, ref subsequent drop down. BUT, much posted evidence indicates people can (relatively quickly) drop to half original dose , in my case to 37.5. But it seems trial & error , as you say, till drug s/effects settle.
What is clear , is that from (37.5 in my case), the degree of titration off amounts, MUST be slowed, as (paradoxically), the lower the doses, the worse the side / withdrawal effects.
Regards SIMON

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@simon007

Zainahelizabeth, I am not surprised your Dr advised you to go back to revert dose. When I went from 75mg to 37.5 mg over a few weeks, I had problems like you. INTERNET advice told me to go back to original dose & start again - which I did. Everyone is different, ref subsequent drop down. BUT, much posted evidence indicates people can (relatively quickly) drop to half original dose , in my case to 37.5. But it seems trial & error , as you say, till drug s/effects settle.
What is clear , is that from (37.5 in my case), the degree of titration off amounts, MUST be slowed, as (paradoxically), the lower the doses, the worse the side / withdrawal effects.
Regards SIMON

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Thank you Simon, for your message. It is incredibly helpful to hear of other peoples experiences with this. By the time I saw the doctor, I had gone back to 75 mgs daily from 37.5. She suggested that I added another 37.5, so that I am now on 112.5mgs per day. Quite honestly after five days, it hasn’t done anything much as far as the withdrawals are concerned. I have a horrible feeling that I will have to end up back on the full amount I was originally on - 300mgs daily. I have read that one way to get rid of withdrawals is to go back to your original dose, and that they will then go within 24 hours. It’s taken me about six months to get to the 37.5mgs, but I can’t stay as I am. When/if I try again, I’m certainly going to take it much slower from 75mgs downwards. Thank you so much for contacting me.

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@zainahelizabeth

Thank you Simon, for your message. It is incredibly helpful to hear of other peoples experiences with this. By the time I saw the doctor, I had gone back to 75 mgs daily from 37.5. She suggested that I added another 37.5, so that I am now on 112.5mgs per day. Quite honestly after five days, it hasn’t done anything much as far as the withdrawals are concerned. I have a horrible feeling that I will have to end up back on the full amount I was originally on - 300mgs daily. I have read that one way to get rid of withdrawals is to go back to your original dose, and that they will then go within 24 hours. It’s taken me about six months to get to the 37.5mgs, but I can’t stay as I am. When/if I try again, I’m certainly going to take it much slower from 75mgs downwards. Thank you so much for contacting me.

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Zainahelizabeth, No problem, one thing that I did not mention, it is a subtle issue. Some people with hyper sensitivity to VENLAFAXINE, get an increase & jump in side / withdrawal effects, as a "spike", immediately after dropping down . This can last for some time, before your body gets used to accepting the lower dose. I noticed this definitely happened , every time, when dropping down , in small steps, from 37.5 mg. Before , when dropping down from 75mg to 37.5 mg , this issue was nothing like as noticeable. You have to stick with this issue , it is temporary, and let things settle over time, BEFORE dropping down again. Your Dr & Pharmacist need to work together & devise a strict taper down regime. Try & get a Pharmacist who has experience in this procedure. I did try, (a very expensive ) , liquid form (an NHS made up) mix to titrate off with, mid using the pill split & water dilution process. But, this caused chaos and totally upset the pill / water mix regime I had been used to and using before. Your system needs to get used to , (and adjust to steps down from), exacting and small amounts of reduction. Simon. On 22 Jun 2024, at 18:23, Mayo Clinic Connect < nf+a2e76d9f+11559957@n1.hubapplication.com> wrote: ## reply above this line ## Mayo Clinic Connect Reply by @zainahelizabeth to a comment you posted on discussion "Severe withdrawals - Venlafaxine (Effexor) - please help!" Excerpt of your comment Zainahelizabeth, I am not surprised your Dr advised you to go back to revert dose. When... Their reply Thank you Simon, for your message. It is incredibly helpful to hear of other peoples experiences with this. By the time I saw the doctor, I had gone back to 75 mgs daily from 37.5. She suggested that I added another 37.5, so that I am now on 112.5mgs per day. Quite honestly after five days, it hasn’t done anything much as far as the withdrawals are concerned. I have a horrible feeling that I will have to end up back on the full amount I was originally on - 300mgs daily. I have read that one way to get rid of withdrawals is to go back to your original dose, and that they will then go within 24 hours. It’s taken me about six months to get to the 37.5mgs, but I can’t stay as I am. When/if I try again, I’m certainly going to take it much slower from 75mgs downwards. Thank you so much for contacting me. VIEW & REPLY Unsubscribe from this content and see links to review my email settings.

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@simon007

Zainahelizabeth, No problem, one thing that I did not mention, it is a subtle issue. Some people with hyper sensitivity to VENLAFAXINE, get an increase & jump in side / withdrawal effects, as a "spike", immediately after dropping down . This can last for some time, before your body gets used to accepting the lower dose. I noticed this definitely happened , every time, when dropping down , in small steps, from 37.5 mg. Before , when dropping down from 75mg to 37.5 mg , this issue was nothing like as noticeable. You have to stick with this issue , it is temporary, and let things settle over time, BEFORE dropping down again. Your Dr & Pharmacist need to work together & devise a strict taper down regime. Try & get a Pharmacist who has experience in this procedure. I did try, (a very expensive ) , liquid form (an NHS made up) mix to titrate off with, mid using the pill split & water dilution process. But, this caused chaos and totally upset the pill / water mix regime I had been used to and using before. Your system needs to get used to , (and adjust to steps down from), exacting and small amounts of reduction. Simon. On 22 Jun 2024, at 18:23, Mayo Clinic Connect < nf+a2e76d9f+11559957@n1.hubapplication.com> wrote: ## reply above this line ## Mayo Clinic Connect Reply by @zainahelizabeth to a comment you posted on discussion "Severe withdrawals - Venlafaxine (Effexor) - please help!" Excerpt of your comment Zainahelizabeth, I am not surprised your Dr advised you to go back to revert dose. When... Their reply Thank you Simon, for your message. It is incredibly helpful to hear of other peoples experiences with this. By the time I saw the doctor, I had gone back to 75 mgs daily from 37.5. She suggested that I added another 37.5, so that I am now on 112.5mgs per day. Quite honestly after five days, it hasn’t done anything much as far as the withdrawals are concerned. I have a horrible feeling that I will have to end up back on the full amount I was originally on - 300mgs daily. I have read that one way to get rid of withdrawals is to go back to your original dose, and that they will then go within 24 hours. It’s taken me about six months to get to the 37.5mgs, but I can’t stay as I am. When/if I try again, I’m certainly going to take it much slower from 75mgs downwards. Thank you so much for contacting me. VIEW & REPLY Unsubscribe from this content and see links to review my email settings.

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Thank you for your advice Simon. Tomorrow I’m going to
put together a list of questions to ask the pharmacist. I’ll be speaking to him on Monday, and I’ll mention everything you’ve said.
Z-E.

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