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anyone experiencing delayed severe withdrawal from effexor

Hi everyone,
I was put on effexor  i decided to quit it in january after four years on it  this year. I tapered off slowly ( as i have had the withdrawal nightmares from tapering off it and others before leaving me runnig back to the docs to get them back after a week. ) I took a month to taper and replace it with st johns wort and 5 htp. at first everything was great mimimal withdrawal and i thought i had it beat. but suddenly in april i began to get severe anxiety and terror and it was relentless ! the doc and naturopath felt at first it was just too much st johns wort and told me to stop it cold turkey which i did. they gave me a week of xanex to take thinking it would dissappear. Not so now at the end of july its worse than it ever was before taking the medication in the first place. i have severe relentless anxiety and terror over what i dont know , weeping all the time no sleep bleeding stomache and intestines rapid weight loss total disinterst in anything mood swings and outburts of anger and now the darkest suicidal depression i have ever felt in my life. my legs and arms womt stop moving at first it was just restlessness and kicking and an ina bility to sit still now its like toothache nerve pain everywhere .  with muscel and organ cramping .myhusband has had to all but give up his job to look after our children and home i am unable to leave the house or even have a short conversation with anyone without becomming ridiculoulsy edgy anxious and weepy. every time the p doc tries to put me back on medds it makes the condition ten times worse and i wanted to jump through a window to get out of my body . this is terrifying . in desperation and pity my doc gave me clonazepam to try for a month which has kept me alive ( Barely )and i have been taking b vitamins and iron supplemnts as i got so anemic and my blood pressure drops so low i faint ( i have been checked medically and they can find nothing wrong and attribute it all to anxiety . ) now the doc has told me that i have three weeks left of clonazepam and thats it . has anyone else experienced delayed onset of withdrawlas like this , ? does anyone know how long it lasts this has been the worst four months of my life . My only lifeline was a website i found called the road back by james harper , i encourage anyone thinking of or trying to quit to check it out. . Just look at the sidemeffects of the medications lexapro cymbalta clonazepam effexor etc , its unbelievable and disgraceful that these are kept under wraps and not told to us . ( bit of the tigress coming out there i fear lol) I am scared , i cant find anyone else who has experienced this delayed withdrawal or hasnt been helped by going back on the meds.i dont know what to do . Angry mums post resonated with me and prompted me to join and write , it seemed the closest to what i am experiencing. ( By the way i totaly resonate with the name too, i have terrible mood swings and dont recognise myself.) anyone out there know how long this will last? . I am just so sad, in feb i was pretty much tablet free happy and ready to return to work.. now i feel like  i am waiting to die . it just happened without warning like a freight train hit me . Its only the clonazepam that has helped me to focus enough to read researcha nd even write this , but their side effects are pretty tough too and the withdrawals sound just as bad.even trying to cut them down by half a tablet has dramatic effects on my mood and stability unfortunaley like many of you my docs have little knowledge or interest in the destructive nature of thiese evil drugs.its so sad to see how many of us are sufferring. But i must say i am so glad to have found a place to share vent ask questions and reach out to others like me.sorry this is long winded.I am a bit of a rambler .big hugs and love to you all my heart and soul knows and feels your pain.I know i cant take much more and need to hear someone has come through this and out the other side.
Best Answer
1042487 tn?1275279899
You must change doctor. I found a great doctor that is impressed with my knowledge of neurobiology, medications and medicine in general so she signs whatever I ask for.

It is true that most doctor don't know how to deal with ON since it's easier to diagnose it as chronic tension headaches due to psychological disorders. You must be very persistent and see the specialists you need to see and that is neurologist and neurosurgeon. I'm still on the waiting list and its been 6 months. Been suffering for 1 year now.

Chiropractor did nothing to me. Physical therapy was helpful but the relief was very temporary. Now I put all my work on my posture and self-massage like occipital release techniques (YouTube that). I now rely on hard cervical collars to help with posture even I know if can cause atrophy at least it release the spasms that are compressing the nerves. I used a soft cervical collar at first but those thing are not isolated and not comfortable at all. Actually I was getting in the muscles under my chin from wearing it.

You must absolutely see a neurologist that will listen to you and then refer you to a neurosurgeon if you consider MVD surgery or gamma-knife. A nerve block should confirm the diagnostic and relieve the ON for a while.

Muscle relaxers are a double-edge swords as you get addicted to them and try to live without em when your spams are worse without em... Anyway my combo for ON now is mirtazapine, tramadol, diazepam, baclofen, I'm now feeling better with the baclofen and tramadol added as I'm very tolerant to diazepam now. I suggest you start with baclofen as you won't develop tolerance. Benzos are very helpful when youre having an attack and feeling like dying as the spasms and neuralgia are very strong. (you must know what I mean).

I wish you the best,
M4
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Avatar universal
Again, not a doctor. But mixing the "natural" things with prescribed drugs. Very little is known about interactions. You really have to do some research, and not research from the natural salespeople who are trying to make money. For example--the natural prostrate drug--can't remember what it's called. Does not work well with many antidepressants. Made me just feel weird.
Helpful - 0
Avatar universal
You probably know this, but effexor is the worst for getting off of. Break the capsule open and count the pellets inside. Reduce the pellets by a few every 2 days. It did help me a lot, but I was so paranoid about forgetting to take it, or if I ran out, that I stopped. If you forget to take one for just a day, you will notice. Pass this on if it helps anybody.
Helpful - 0
Avatar universal
Oh you wee pet, i know exacttly what you mean , the on makes you want to blow your brains out. and it can last for days and days at a time. i also have the chronic tension migraine and spasms where you describe. and sinus pressure even though i avoid all dairy like its poison.
my doc refuses to give me diazepam or refer me to neurologist . Is your c2 and 3 out? mine is and this adds to the anxiety and neuralgia . the pain cliinic doc explained that all the spasms in my brain and shoulders etc where comming from my neck causing the ON . I went toa chiroopractor who specializes in a very gentle non crunch technique ( i will post the name of it when i ask her again ) that really seemed to help my ON and posture , maybe that would help you too? She is from cananda as well and has so many contacts there i am sure i could get her to recommend someone in your area . i was just about living with that but the length of time i have been sufferring now wth what def appears to be tardive and chronic akathisia from coming off effexor is whats driving me to suicide as the only way out of the all over body pain it causes terrors like you wouldnt believe terror and anxiety over nothing, with legs and arms that keep hurting and shaking with what feelsl ike an all over toothache. i have lost all ability to function normally . i got a few diazepam off a friend yesterday , not idesl i know but needs must and   the doc wont listen  and keeps wanting me to go into a mental hospital because they want to put me back on evil drugs that are and keep making this worse, i went for an assessment to keep her happy and with a little hope they would recognise it and could not believe how backward rude and horrendous they were to me.  they treated me like a naughty child because ia m an ex nurse and know what i am talking about ,( i was shocked that i knew moew about the condition and whats used to treat it than they did) so refused to take the meds that are known to cause this condition, . i now know if they had sent me to a neurologist like i had asked in time there was a chance this could of been reversed , but its been left so long i have neuropatiic nerve pain all down my legs arms buring stabbing sensations that make me want to cut my legs off , but of course its all in my head. (according to the docs)

my heart goes out to you , the on is horrendous , as for sinus on top of it  i find anything chemical polish deoderants airfrfesheners dairy of any sort sets it off and makes it worse but you have prob figured that out by now yourself . Ialso found taking garlic and tyhme capsules to be very helpful in reducing and relieving the pain and congestion from it .Also lying down with a hot lavender filled pack onmy face is the only thing that works when i get an attack of it , pain killers do nothing for sinus and the sinus painkillers just keep bringing the condition back on.

lil_Tigress

Helpful - 0
1042487 tn?1275279899
Me too I have occipital neuralgia and chronic tension headaches. This is the reason I'm on medication, the ON is killing me. Constant pressure bain and spasms in the occipital triangle and splenius, pressure forehead and sinus.

My benzodiazepine is diazepam due to its long half-life and now trying baclofen too (been 1 week on it) before it doesn't cause tolerance and might be efficient at treating spasms. I really need to work on my posture tho.

M4
Helpful - 0
585414 tn?1288941302
Tardive dyskinesia can be "masked while being worsened" (that's known in standard medical literature) so when the medication that is potentially causing it is stopped it can then return in full. However there are also standard withdrawal symptoms from Effexor and other anti-depressents that you may be experiencing and of course the return of the symptoms the Effexor was treating. All of this is clinically complex and a doctor who prescribes a medication for a legitimate use (in this case depression) would not be at fault but they should research and then be able to prescribe another option that would not have this potential side effect. It would be worthwhile to seek a second opinion as regards psychiatrists and they could then help as regards a referral with a movement disorders specialist as since tardive dyskinesia (or tardive akathesia or any of its variants) needs to be diagnosed and treated. There are a variety of options as regards medication for tardive dyskinesia that should be able to mitigate the spasmic activity so that it would with treatment improve.
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Avatar universal
Hi suzsibs, thanks for your post, have you ever heard of akathisia? it can come on acutley that is within an hour of taking an antidepressant medication , or tardivley (sp) usually twleve weeks after stopping the meds its symptoms are very like what you describe and i have been going through , i had no depression or anxiety or problems at all for twelve weeks after comming off the effexor then all the hell kicked in , as decribed above. its considered chronic if it lasts more than four months and is more prevelant in woman for some reason. the problem wit it is every time i try to go back on the meds it exacerbates and aggravates the problems. at first it was just sheer terror and anxiety with constant kicking legs and restlessness twisting torso and tears , my adrenals were in overdrive all the time .its only since i have been ignored and told to take one anti depessant after another which kept making me worse that the deep depression set in as i feel i have lost not only my life but my familly has lost theirs too. i would gladly take the effexor back again to stop this but every time i try i feel like screaming and jumping out of my body and hacking my legs off its that bad really.I have spinal damage scoliosis lordosis spondylithisis (sp) and my neck vertbrae and lower back are all out of wack due to an accident four years ago which is when i was put on the effexor . I wonder is there something in that? a friend of mine suffers similar though not as severe symptoms also due to a back injury. On the effexor i had some muscel jerks and kicking legs though nothing like i have now . I got a second opinion but unfortunatley it had to go through my doctor who refused to send me to a neurologist or movement disorder specialist . Southern Ireland is a funny place. Patients are discouraged from knowing anything about their condition and if one doc says its a when its clearly b all others follow suit. The weird thing is i got better and better and all the side efects were dissappearing esp the serious ones from the efexxor untill the twelve week mark . i dont understand and am at the end of my rope.how are you doing now ? did you have any problems going back on effexor after six months? I was so happy and well i dont understand why this has happened.

thanks for your post and support

hugs

lil tigress
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Avatar universal
I wish  ;-) in ireland the docs tell you what you will do lol they simply refuse to listen or believe how dangerous the side effects of withdrawal are. Mine told me coldly i was addicted and that i had a week to taper of 1 mg three times a day. she doesnt even want to see me til i have done this . I have brought her clinical eveidence and she wont read it . I was origionally put on clonazepam for nerve pain occipital neuralgia after a car accident two years ago two 0.5 mg at night. it was this that prompted me to ask for more to get over the hell i was going through. i was given no advice on addiction or tapering until i  had been on them three times a day for a month. I cant even go to another doctor as we are only allowed to see the ones in a seven mile raius of our home and they all stick together like glue. i have tried several times to get second opinions which are given and then ignored.there is a big god complex here with doctors unfortunatley. if its anything like the hell i am going through now i really think i will end up ina padded cell or a coffin at this rate. I agree with you after my experience with 5htpand wish i had never listened to the advice of the health store.

How are you ? thanks for replying and your advice

lil_tigress
Helpful - 0
1042487 tn?1275279899
It sounds like a relapse not withdrawal symptoms.

You say your doctor told you you had 3 weeks left of clonazepam and that's it. Don't let any doctor tell you this. Benzodiazepines withdrawals can be quite severe if not managed properly and it can take months and even a year to come off a benzodiazepine. You will tell your doctor that YOU will decide when you will stop the clonazepam and you and your doctor should manage an extremely smooth tapering schedule.

About the SJW and 5-HTP now. Some people think that taking natural stuff is better than taking a pharmaceutical product. This is a myth, actually 50%, if not more, of synthetic pharmaceutical products are derived from plants.

SJW have less side-effects which would suggest why it is less effective at inhibiting the reuptake of serotonin and norepinephrine.

''The exact mechanism by which St John's wort functions is unclear and subject to conjecture. The St John's wort mechanism is believed to involve inhibition of serotonin (5-HT) reuptake, much like the conventional selective serotonin reuptake inhibitor (SSRI) antidepressants. The major active antidepressive constituents in St John's wort are thought to be hyperforin and hypericin, although other biologically active constituents present, for example, flavonoids and tannins, may also be involved.

Some believe that hyperforin is the major constituent responsible for antidepressant activity, and it has been shown to inhibit the uptake of 5-HT, dopamine, and noradrenaline. Hyperforin also has affinity for GABA and glutamate receptors. On the other hand, a hyperforin-free extract of St John's wort (Ze 117 - Remotiv) may still have significant antidepressive effects.''

All the effects of SJW you have read above can be achieved with both pharmaceutical products and herbal remedies. 5-HTP you buy at the natural food store by the way in synthetic just like any other synthetic pharmaceutical products.

M4
Helpful - 0
1168938 tn?1327154232
Hello
You sound like me 9 years ago, I take effexor and have done for 8 years, I started to get muscle spasms and jerks, doctor thought effexor caused it. I stopped taking it gradually to see if jerks would stop, I went down hill fast and after 6 months of hell I went back on effexor because jerks didn't go away and I'd rather live a jerky life with effexor than without it. I have been diagnosed with spinal myoclonus (cause unknown). I would like to know why your doctor stopped your meds in the first place, it sounds to me as if you need something to help with your depression etc. I have suffered the same as you (and still do) but cope better on meds. I don't think you are having a delayed effect you are obviously not well. Go back and talk to your doctor, if you are not satisfied with your treatment get a second opinion.
I wish you all the best, and YES YOU WILL COME THROUGH THIS :0)
Suz
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