Hi,
Just a quick update. Feeling pretty desperate at the moment. I only ever got up to 15 mg, titrated down to 5 probably too quickly and am dizzier than I have been in years, disabled by it. I am stuck between a rock and a hard place as going back up isn’t the answer, as it made me dizzy being on it.
Really, really wishing I had never touched the stuff, hindsight is a wonderful thing.
H
Well I’m four days in to stopping the drug completely and the dizziest I have been in years. Vertigo is back with a vengeance. The dizziness is actually so different from what I generally experience with a migraine that it’s obvious it’s drug withdrawal. I have also been experiencing heavy duty nausea, something I haven’t had since this whole ordeal started nearly 7 yrs ago.
In all honesty I feel angry. I was led to believe low doses of this drug wouldn’t bring on the same level of discontinuation syndrome and it simply isn’t true. If I had really grasped the risk I was taking I don’t think I would have gone there.
I have no idea how long this is going to mess me up for, but going back to a permanent 24/7 vertiginous state when I had got past that is utterly gutting. Wish I had just stuck with the propranolol and the relapses I got with it as they were a million times better than what is happening to me now.
Sorry if this is a rant, just so upset right now and so ill. I took it because I was desperate, as we all are, to be rid of these symptoms, but now I feel much more desperate than I ever did before.
H
Hannah, that sounds awful. I’m sorry you are going through this. I felt the same way about Topamax when I was on it. Fortunately for me, the misery stopped when I stopped taking it. I’ve been considering Effexor, but your posts along with some of the others’ experiences are scaring me a bit. I’ve read that you can try switching to Prozac for a short-time to help you off Effexor. Have you considered trying that approach? It may relieve you of at least some of your withdrawal symptoms. Do you have any idea how long the withdrawal symptoms may last?
Hi Crystal,
I’m impatient and decided to jump right in with the 37.5mg dosage.
You may be setting yourself up for failure on Effexor by doing this. It does tend to create a massive rev in most people initially and will likely exacerbate your symptoms. Hain recommends starting at 12.5 mg. Migraineurs tend to be much more med sensitive as outlined by Dr Rauch.
While I know many have had a rough time on this stuff or it has been ineffective, some do really well on it. This drug has proven to be very, very good for Jenny. Pristiq (another Effexor-like med) also completely eliminated symptoms in a former member. The take home message here is there’s just no way of predicting how any med will affect one of us until we dive in there. It’s unfortunate that these meds aren’t more consistent across the board.
Will speak to you tonight Hannah …
Scott 8)
Hi Marci,
Scott is right, one person’s cure is another person’s poison. I was wary of talking about this as I didn’t want to put people off. One of the problems of a form is that it’s fantastic to have support and a place to chat about this stuff, but the downside is you get to hear about the scary things people are going through with drug SE’s.
I guess now I am in this mess, I am torn. On the one hand I don’t want to put people off, on the other I do actually think people should know the truth about this drug. It has a bad discontinuation syndrome for many people. I trawled the net and came across vast amounts of people talking about what they’re going through, many of them angry they had ever been given it. On the other hand, some people come off it with absolutely no issues whatsoever. I think I was doubly unlucky as some of those having a bad time withdrawing had been absolutely fine on the drug, they could stop the discontinuation syndrome by taking it again if they chose. I can’t do that as all it caused me was side effects and worse symptoms on it.
I talked to another member who also took this and came off. He had similarly bad withdrawal but it stopped in approximately 2 weeks. I am really hoping that is the case with me. In the face of how I am feeling two weeks sounds like a party compared to the months and months I fear.
H
Hannah - I appreciate you sharing. I think we all just have to be mindful that we’re all individuals and respond differently. That being said, Effexor is known to have difficult withdrawal. Are you getting off of it gradually? I’m just finishing week one on Effexor 12.5. It still makes me more woozy, nausea has subsided, but I am now grinding my teeth. Nothing I cannot manage if it means getting rid of this terrible dizziness. I am always second guessing my choice in meds, but I guess you don’t know unless you try.
Hi Lisa,
I didn’t really titrate down that slowly, I very quickly went from 15mg to 10mg and then 5mg over about a week, then I stopped it completely 5 days ago.
I had heard that you should go slow, but the problem was the drug was making me so sick and the side effects were so intolerable, that I knew if I prolonged it being in my system those SE’s would continue. Frankly I was going to be messed up either way so just wanted it gone. Possibly stupid, but at least the teeth clenching, sleeplessness and chronic anxiety have gone. The anxiety was bad on the effexor. That stopped almost as soon as I got off it.
The vertigo has been better today but the brain fog is now horrendous. Pea soup. I had to do a whole day of interviewing people today. I was so foggy I just wanted to lay my head on the desk. The people I am working with don’t know I am ill. I have such huge responsibilities currently that if I told them what was really going on they would panic. It’s a miserable and stressful situation, especially as my job is creative and requires me to think a lot, come up with ideas and write, things I am barely capable of currently. Ughhh.
Who knew such a crazy condition even existed. Before I got it I couldn’t even have imagined it.
H
Hi all,
I’m a little wary of posting this as it’s negative and also someone else’s experience rather than my own, but anyway…
A friend of mine who is not a migraineur was on Effexor a couple of years back for depression. He was empathising with my vertigo and said he had the exact same thing (the trampoline rocking on a boat kind) trying to come off Effexor. Eventually he toughed it out and went cold turkey but he said all up he had 12 months of vertigo.
Not trying to scare anyone or bad mouth the med (seems like plenty of others have great success with it), just sharing. I’ve never tried it and am currently on Prothiaden (and doing OK).
Victoria
Hi All,
Thought I’d add that I’m reducing the dose of Effexor now and it’s no worse for me than any other SSRI I’ve come off. In fact, it’s probably easier! There’s been no flu-like symptoms with dose cuts, at least not yet. I do get dizzy periods and feel freaked at times but I’m hanging in there. Effexor seems to really effect my muscles in a negative way. I still have what feels like plantar fasciitis on my right foot and over the last 3 weeks endless back spasms which is highly unusual.
Scott 8)
Hi Everyone,
I just wanted to say how sorry I am that you’re having so much trouble with worsening symptoms side effects and Effexor withdrawal.
It’s so hard to get my head around how one med will work so well for someone and then does horrid things to another.
I had this happen on topamax , and my Mav buddy , had great results with it.
I’m not a teeth grinder unless I’m on anti D’s.
I had some bruxing (teeth grinding) and insomnia for a few days with anxiety in the beginning too, with Effexor, which defiantly coincided with titration, only for it to stop about four days later and then I was back to more recovery.
I’m so sorry this didn’t happen for you all.
There’s many Mav’ers that have been on the antidepressant Medi go round for a long time, only to find some meds mess with them way too much and for too long, it makes it intolerable to keep going. 
Here’s some meds I’ve tried
PAXIL ( Paroxetine)
Paxil 10 years ago and I lost all inhibitions on it, :shock:
It was large dose, and many years before getting a true diagnosis of Mav.
And I went off it cold turkey with no withdrawal symptoms oddly enough.
Zoloft Dr prescribed
Completely stopped me sleeping insomnia, for months on end, until I had to go off it.
The only thing zoloft did for me, was it gave me energy to get things done.
My withdrawals off of zoloft have always been a nightmare no matter how long I took to taper down.
It took 2 to 3 weeks of hell!
1st time I was on 100mg for a year or so…
My (GP ,DR) told me to get off of it due to suicidal thoughts
He never told me to taper… with a withdrawal I’ll never forget…
I almost ended up in ward 19, the Looney bin!
And had to work as a singer 6 nights a week on stage during withdrawal.
On with the show!
Prothiadon( Dothep) 75 to 100 mg 2 years the first time,
Then 3 years until my first tachycardic event,(AV node)
For me it worked well as a masking agent for Mav lowering symptoms almost as well as Effexor has.
Prothiadon Gave me a lot of well earned sleep and helped me get through life without complaining or dwelling on my situation.
And no more IBS, but I ended up having to go off it due to my heart probs (tachycardia)
If I could use it now, it would have happily gone back on it before trying Effexor, as I was also afraid of the side effects and withdrawal syndrome, incase it didn’t work.
Prothiadon can bring on tachycardia in some people prone to
Topamax 5 months
Remission at first on 25mg for one month only a very disappointing result, or was it the Zoloft withdrawal, I’ve had withdrawal stop my migriane cycle in it’s tracks many a time…
They say (The first sign of madness is talking to yourself) “BUT arguing back at yourself?
Dangerous!
Rash like blisters, on my chest couldn’t breath, anxiety to the max, crying at the drop of a hat, and many more side effects. Not good!! My brother Scott has schizophrenia, so I wasn’t willing to push it the envelope any further!!
Enough said?
Endep, first and last medication my neuro prescribed.
10 mg 3 months.
Worsening symptoms; I stayed on it for a very teary 3months.
Verapamil, prescribed by my cardiologist for tachy.
Headaches at first while I got use to it about a week’s worth (opening up the veins?) side effect.
I’m still on it, helps a bit with lowering symptoms.
Neurontin 300 mg, still on it. It’s a baby dose in the world of Mav so I’ve been told???
Not too bad at a lower dose,
Too high and asthma rears it’s ugly head with rashes and sleepiness during the day.
Helps me sleep.
Effexor 75 mg
Still happy and doing well!
Except for a week before my period during. But still leveling out at around 80 to 90% most days. Hope it doesn’t conk out on me as other meds have…
Vit B12 injections really helped me.
Vit B2 really helps.
Magnesium, helps with constipation.
Thinking of you all.
Jen
Jen - I agree. We are all different. This is why it is so very hard to find the med that works. I have been on Effexor for 1 week, and increased the dose to 25 today. Some side effects of nausea, tooth grinding, and wooziness (increased dizziness), but nothing I cannot handle if it means getting better. I feel very weird today from the titration, but I know that is to be expected. just wondering - on what dose did you begin to see improvements? Again, I realize that we all respond differently, but I am still curious. Did your disequilibrium (rocking) end gradually or more abruptly. I would give anything for that symptom to finally end.
Hello,
Wanted to say I think it’s really great you’ve posted Jenny. I do think it’s important people get a balanced view of the up sides of this drug as well as the down sides. In another post I mentioned how a friend of mine was given her life back by pizotifen, a drug that almost sent me to a psychiatric unit it caused me such severe anxiety. The same friend had a terrible time on propanolol - the only drug that provided me with some improvement and stability over a three year period.
I think my anger and frustration stems from having closed my mind to what could happen at a time when I can ill afford to do so. I think I presumed that at such a low dose if the drug was a problem I could come off it and the problem would stop. This is what has happened with other drugs. I was unexpectedly given a huge career break as I was on effexor (I knew this career event could happen but thought it wouldn’t be for another few months) and am facing massive responsibilites and for the first time the pressure of living with this current upsurge of symptoms is proving almost too hard to handle emotionally. I am scared I am going to mess up and lose the career I have worked so hard for. I already nearly lost my career when I first got ill seven years ago in August and was forced to take two years off - my symptoms were so violent it was impossible to work. I also nearly lost my home.
I think if I was in a different place I would be taking this less hard. I also think it’s possible the effexor withdrawal is causing me to be less rational than I would otherwise be. I had a row with a friend yesterday and ended up standing in the middle of a busy street crying my eyes out. This is totally unlike me - I hate arguing and I can’t remember the last time I cried in private never mind in public. It made me wonder if maybe this is messing with me in more ways than simply dizziness and nausea. Over the first two years I was ill I was a member of the healthboards and wrote on there all the time - I was always concerned about scare-mongering re drugs as I realised it would be difficult for anyone who was going to try the same drug. I have had some bad experiences on other drugs and rarely mentioned it for that reason. I guess the pressure I am under and the drug itself has meant a loss of the self control I would usually show. I come here for support and definitely don’t want to alienate anyone.
It helped, Jenny, as it has with others, to hear that you have been through withdrawal with other anti- depressants and that it has subsided. It’s the not knowing how long I will be stuck like this and whether I will manage work that is terrifying me. It is only a week since I stopped it, who knows maybe in another week or two I will be ok. I guess the memory of a twelve week relapse a year ago and the two years I spent unremittingly ill before that makes my heart sink, as I know once the symptoms are back for me there is just no telling when they will subside.
My intention is not to scare people. I guess the only thing I would say to anyone trying effexor is to make sure they time their trial of the drug well. Be aware you may have to take time off work when starting it or withdrawing from it and pick a point where that would be possible. It isn’t possible for me right now and that’s what is making this so bad.
H
Hi Lisa,
My rocking dropped off slowly after 37mgs, and then the rocking became very slight during my period last week.
I normally have an extended period, due to my IUD contraception, as I can’t take the pill.
The migraines and rocking appeared during this time, mostly just slight visual aura, the symptoms were cut in 3rds to what they used to be…Unreal!
I had NO shoulder neck or head pain/ stiffness, No weakens in my legs, ect…
Again, every symptoms I would normally have is almost gone…
Making this illness manageable.
Just like Joe and others here, I’m a longtime Mav’er, so who knows what damage has happened in the past 16 years.
I am not at 100% yet and am begging for more. Greedy Yes!
But after what I’ve been dealt I’m happy with my progress.
I need to concentrate on diet, and also give up my disgusting smoking habit.
That would probably take me to a ** home run!!!** 
100%
Lisa,
In the first month I had most of the side effects you’ve mentioned, maybe to a lesser degree though.
My stomach upset only lasted about a week what a bonus, try some ginger? I put it in some hot water and made it like tea.
I’m not saying this med will take me or any one else to 100%, but boy I don’t regret taking it.
I’m a very happy chappy…
Please feel free to ask me anything anytime about Effexo.
I started titration on the 25th of Jan…
If Effexor conks out on me?
and I was to go off it to try something else … I would do it the same way (if not slower) than I went on it.
Counting out those tiny pellets one by one, and taking my time.
I’ve had way too much trouble coming off meds to put myself through that again.
All my love and best wishes everyone.
EDIT:
Dear Hanna I understand your anger OH YES!!!
I’ve been there too… xxxx Through the ringer with many meds , withdrawal and side effects, thank you so much for telling your side of things… I also had a fight with my friend during withdrawal a long withdrawal and painfull time,
so yes I understand how devastating that can be.
Withdrawal can really make us very very sick and at our whits end… If you have some benzo’s I suggest you take them while your going through this, I did and it helped my withdrawals…
Please look after yourself.
all my love Jen.
jen
Hannah - thanks for your post. Don’t feel badly at all about writing about your negative Effexor experience. I completely relate to what you’re saying. I spent the majority of Friday and Saturday crying. This is such a difficult illness to deal with. I wish you lots of luck.
Jen - thanks for the info. I sure hope this works for me. Will keep you posted.
Hi Lisa,
Really sorry you have been low as well. Who knows what would have happened if I’d managed to stick with effexor. Maybe it would have made me well, my current circumstances meant I simply couldn’t take the risk of waiting and seeing as it was making me so off my head dizzy. I really hope it is the drug for you and it comes good.
At my worst with this I focus on ‘this too shall pass.’ I have had long periods of normalicy post the initial dreadful two years. It can happen. You will know what it is to feel normal again. I remember when it happened to me, walking round a park with a friend and thinking - this is amazing - just to take in the outdoors without the continuous addition of dizziness and fog and nausea and vertigo. I really hope I get back there, I hope we all do. In my worst periods, like this one, I find it so hard to believe this can go. Even though I know it can and it has.
Struggling again today - I feel like taking my brain back to the store and asking to replace it with one that isn’t faulty.
H
Hannah - That is very encouraging to think that “this too shall pass.” My problem is that I’m feeling so hopeless that I feel like I’ll be ill forever. wish I can actually start to believe that this will get better one day. I can deal with all of this if I knew that it will eventually go away. It is so very difficult when you cannot do anything. All I do is sit home day after day. I understand your hesitancy in taking a drug that initially makes you feel worse while you are working. I worked as a psychologist for the first 1 year, and it was so hard to take meds. I eventually had to take disability. On top of my usual symptoms, I feel much more woozy, flu-like, etc. from the Effexor. I sure hope it works.
Hi Lisa,
I understand exactly what you mean, every time I relapse I don’t believe I will get well. I don’t believe it now which is why I am so utterly despondent. However, the fact is I did get, if not completely well, then functional for months on end, with blips here and there interspersed with lengthy relapses. I can’t know for sure but I think this was because of propanolol.
I think the problem with it is that you feel so taken over. It feels like a part of you it’s so all encompassing. So when you try to think of it going it’s a bit like trying to imagine your arm will dissapear. However the other thing I try very hard to focus on is that it’s only a migraine. As disabling and horrendous as the symptoms are, they are actually all simply a part of a migraine in action. Stop the migraine, you stop the symptoms. So difficult but also so simple.
I also know how difficult it is but also how important to try and control my stress and upset about it. I am failing miserably at the moment to do just that. I know for me anyway, my migraine definitely enjoys my being stressed or anxious and along with sunlight and lack of sleep and the myriad of other triggers, stress and worry don’t help me. It’s a perverse condition, it sends me half mad with misery and then I need to take a laid - back, it’ll all be ok approach to get well.
If it’s any consolation, although I currently don’t believe I will ever be well again, I believe you will, lol Obviously I am capable of a perspective on other peoples’ situations which I am entirely failing to currently have on my own. When I first got ill I was put in touch with a person who had suffered from a vestibular disorder and recovered. He told me again and again that I would get well. I was so ill and so anxious it was exactly what I needed to hear. He was right, I did crawl out of that dreadful place and resume a fairly functional life. You need to focus on that. You will get well. Honestly. You will. You might always contend with bits and pieces of migraine activity, but you will not always be disabled by this condition. You are making the right moves and you will get there. If it turns out not to be effexor it will be another drug, or even time and a shift in what the migraine chooses to do. But one way or another you will not always be living like this.
Now if I could just believe the same about myself. I thought I was doing a bit better earlier but have been struck by a punishing tidal wave of vertigo and lightheadedness that is just disgusting and has sent me back in to doom laden thinking. I keep hoping I will wake up tomorrow and it will have gone and then when it’s still there I am gutted. I say this and yet if I think about it, four days ago I was having much bigger problems writing at a computer and I am finding it a little easier now. So may be it’s baby steps to recovery.
All my fingers crossed that effexor works for you Lisa.
H
Hello,
Here goes with my latest update. Thought I’d keep posting as I might have good news at some point to anyone who is following the progress of someone coming off this stuff. Unfortunately I haven’t hit the good news stage yet.
It’s day nine off this drug and things got worse about three days ago and seem to be at their most severe now. On the up side, the nausea has subsided for the most part, initially there was dizziness and brain fog in spades straight away but no vertigo to speak of. 3 days ago the vertigo kicked in. It is of a quality that I haven’t experienced with this condition in years, a force pulling me round to the left and a feeling of intense pressure through my head and particularly in to my right ear. There is definitely brain fog but of a different quality to when I first started to come off. Obviously the picture is complicated by the fact that I felt bad, dizzy and nauseous on the drug also. Although as I said, the vertigo is new. I am also constantly freezing cold. I didn’t realise this was the drug until I read another person withdrawing mentioning it. The anxiety I experienced on the drug did go immediately, although was replaced by being more prone to crying jags and bursts of uncharacteristic anger.
I am hoping that because I am due to get my period, it is making things worse and will subside after it. For a while I was unclear if this was simply a relapse triggered by withdrawal or withdrawal. Now I think it is definitely the latter with some migraine resurgence thrown in. This is partly because a symptom I always get with relapses is extreme light sensitivity and that is not happening. Also, as I said, the dizziness/vertigo is very different in quality to my norm.
I have read countless reports of effexor withdrawal now and most of the people who have clearly never experienced vertigo or dizziness before are complaining of feeling horribly dizzy and vertiginous along with a myriad of other things that touch wood, so far, i am not getting. Of course I have been trying to glean how long this will last, a lot of people say 2 weeks to a month. Some report much longer periods although I hang on to the fact I was on a tiny dose and many of them have gone up very high for many years.
It still amazes me that I was only on this for 3 weeks and never went past 15mg and this is happening so intensely. I am concerned that people who never experienced vertigo are getting it coming off, it makes me wonder if this won’t subside for me in the same way as I have a vestibular disorder. if I was getting flu like symptoms or some such thing on withdrawal I would feel a lot more easy about it.
Anyway, I have meetings this afternoon that I have to attend and am not sure how I will get through it, I only know that I have no choice. This would be a lot easier to go through if I could just take sick leave. I am trying not to panic and take it each day at a time. I am also trying to focus on those people who said it took 2 to 3 weeks for the worst of it to go.
One thing that does come through from reading the reports from people is that going on to prozac to ease the withdrawal does help a lot. I don’t know whether to try this as I have such a bad reaction to drugs in general I might just create more problems for myself. I still wonder if I should have come off more slowly. As I said before, I tapered from 15mg to 10mg to 5mg all in the space of a week. I presumed at such a tiny dose a slower taper was unecessary. Especially as the drug made me feel so ill anyway. I don’t know. I have been tempted to take the drug again to try and stop this vertigo, but then remember how bad I felt on it.
I am hoping that soon I will be writing a more optimistic post as these things hopefully start to subside. Feeling desperate currently but trying to be positive.
H
I actually haven’t read about withdrawal of Effexor because I didn’t want to worry myself. However, yesterday, my husband happened to look up many articles, etc., on Effexor withdrawal, and he immediately called me and said that he wants me off the drug. He is always pushing me to try drugs and stick it out, but the withdrawal profile really scared him. I hope that I don’t get too sick. I took 12.5 for 1 week, and then 25 for 3 days. I am going back down to 12.5 for a few days and then will stop. IT seems like such bad withdrawal shouldn’t happen on such low doses; however, like Hannah, I am very sensitive.
I am actually considering taking a break from drugs. I’ve been trying drugs for over 1 year and am so jaded at this point. I would like a baby more than anything, am may try that route. I would never consider pregnancy just to rid myself of the dizzies however, it is something that I truly want, and might have a bonus of helping this condition. Almost all my doctors were in agreement that pregnancy almost always helps migraines. I realize there are a lot of cons to this decision as well (e.g., being unable to care for a baby in my state), so I have to think this out carefully.
I was on Effexor for about three months. I started at 12.5 mg and worked up to 37.5 mg. It wasn’t pleasant (mainly due to insomnia and nausea) but wasn’t unmanageable. Unfortunately it didn’t have any effect on my dizziness although it did improve my mood. I discontinued it in a similar fashion to which I started it, over about 2 weeks. I felt worse than baseline coming off it, but for about two weeks.
I’m now taking sertraline (zoloft) and it has been remarkably successful (when you consider that I’ve tried over 20 drugs). Prior to starting zoloft I was on Neurontin 200 mg 3 times a day, Keppra 250 mg 2 times a day and pizotifen 0.5 mg 1 a day. After I started Zoloft (initially 25 mg, then bumped it to 50 mg) I felt a marked improvement and far less low points in terms of migraine/dizziness symptoms. I have since dropped the Neurontin completely, cut the Keppra down to 250 mg once a day (soon to be none) and pizotifen 0.5 mg once a day remains (hoping to drop this completely too).
It was rough to start with but side effects haven’t been anything unmanageable. At this stage I’m left with only insomnia which I plan to treat some other way, given that Zoloft has had such a dramatic effect on the dizziness. I had one excruciating headache when I started Zoloft but none since - very unusual!
Adam