Venlafaxine ER--your experiences and advice, please?

Medication 💊 Antidepressants
1

I would love to hear from people who’ve tried venlafaxine ER (Effexor extended release). I guess this is a generic form because it says “venlafaxine ER” on the bottle, not Effexor.

What dose did you start with, and how high did you go? (The extended-release version–if the dose is different from the regular version.) Do you take it in the morning or evening?

I am planning to stop my Strattera (a little scary to stop after 9 years!) and start the venlafaxine tomorrow or the next day.

I am confused about the dose; my PCP just sent in the Rx and did not mention dosage and titrating up until I asked, but he seemed uncertain and seems to be leaving it mostly up to me. I did not know he was going to prescribe the extended-release version, and I wonder if that’s different dosing? I picked up the Rx a couple of days ago–it is 37.5 mg and the instructions on the bottle just say “take one in the evening.” Yet in my list of meds in my online clinic chart, it says take TWO in the evening. I hate it when things are inconsistent like that and not explained. And why would you take it in the evening instead of the morning??

I had been HOPING to try Savella instead (also an SNRI but one that has a stronger effect on norepinephrine, which I thought would be less of a change from the Strattera) but the doctor had never heard of it and therefore would not prescribe what he called a “new” drug (though it’s four years old). I do think I have a mild case of fibromyalgia and that’s another reason I thought Savella might be a better choice, since that is what it’s FDA-approved for.

I had thought the doctor (my PCP) wouldn’t care which drug I asked for, because he had apparently known nothing about VM and prophylactic drugs for it, and it was ME who brought up Effexor a few months ago. I guess he found out in the meantime that VM was a legitimate thing and that indeed Effexor was used for this purpose, and he was now ready to prescribe it.

He said he didn’t think I should “try to be my own doctor,” but when your doctors either can’t or won’t figure things out, you have to think for yourself! So I found that remark rather insulting. He’d given me no suggestions or ideas or diagnosis for the dizziness, so I had to figure out something on my own. I would WELCOME informed and thoughtful guidance from doctors, but it’s just not happening.

Anyway, venlafaxine it is. I am nervous going off Strattera which has worked so well for my concentration, but hopeful the venlafaxine might dampen what seems to me my continuing low-level migraine activity and prevent more of those white spots on my brain.

And I only have to pay $5 for it (because it’s generic, I guess), versus $123 for the Strattera. (Which doesn’t make total sense, because I was very surprised to see that the retail price for the venlafaxine, 30 capsules, is $121—I had had the idea it was a cheap drug!)

Would love to hear any advice. Also, curious how much it has cost people. Is it really $121 for 30 pills of 37.5 mg each!?

Thanks,

Nancy

2

Hi Nancy,
Maybe you should find a doctor who has experience with migraine treatment. If your primary care doctor doesn’t have any experience with treating migraines he should refer you to someone who does. I’m surprised he hasn’t already given you a referral. I would demand one. I don’t think it’s fair or right for you to have to figure out meds and dosage. A doctor should be doing that.

I hope you feel better soon.
Joy

3

Joy–thanks very much for your kind words and your advice. I agree with you 100 percent! I SHOULD have a knowledgeable doctor to work with, but I have had no luck here (Portland, Oregon).

My migraines and dizziness are not severe, so I have not felt it worthwhile to travel elsewhere for a diagnosis. I have just learned a lot about dizziness over the years, and generally PCPs have been OK with letting me try different meds. I have seen neurologists for other symptoms, so PCPs are not interested in referring me out–also because they themselves have never heard of this migraine-dizziness connection.

I did see a neurotologist and even an otoneurologist, specializing in dizziness, a decade ago, but neither of them could give me a diagnosis, and the otoneurologist brushed off my repeated questions about a possible migraine link; he told me they use meds to treat the headache but not the dizziness. Or maybe he didn’t think migraine was causing my dizziness, as I had other symptoms and he originally said I had MS–then he basically decided I was a hypochondriac.

There is a neurologist in town who specializes in migraine, but I attended a presentation of his and asked about migraine-related dizziness and he had nothing to say about it. Forget that… I would only go see someone like Dr. Hain if I lived near enough.

The problem is that without severe headaches or severe dizzy spells, doctors really do not take this seriously. Daily woozy-lightheadedness and concentration trouble, low-level though frequent migraine activity–doctors cannot seem to accept this is really migraine and that it can be causing any symptoms worth treating.

For now I will just give the venlafaxine a try… took my first dose today.

Thanks,

Nancy

4

I have been on venlafaxine for about eight weeks now and have noticed a difference. I would say I am feeling upto an 80% improvement. Can now unpack dishwasher without feeling I am going to fall forwards and the fatigue has more or less disappeared. Also, my memory has improved since coming off the verapamil (which I had been on for a year). Hooray!

Began to feel better at about the 4 week mark so hang in there… I am also trying to titrate off zoloft and am down to 50mg but do notice dizziness if i go lower on that.

No side effects to report either… :smiley:

Good luck
Emma

5

Thank you, Emma! Glad you are having a significant improvement, and I hope it continues for you!

What dose did you start at? And what dose are you taking now?

I just took my first 37.5 pill yesterday morning. Twenty-four hours later I am feeling pretty woozy, wobbly, weak and weird, like when you’ve just got out of bed from a week of the flu, but I attribute that to having simultaneously stopped taking the Strattera (a norepinephrine reuptake inhibitor I’d been taking for 9 years, so bound to be a little fallout from that!).

I will give the venlafaxine a good long trial as long as I don’t start having bad side effects. So far not. I’m sure the crappiness this morning is from stopping the Strattera.

Thanks again,

Nancy

6

Nancy

The doctor had me titrate up to 37.5mg over the course of 2 weeks. I am still at that dose. I have another appointment with him in a couple of weeks and am thinking he will probably take me up a bit more.

I do remember feeling a little yucky at the beginning. At about 3 weeks I felt nauseous for a couple of days and read that that was quite normal. It went away though and since then I have felt fine.

I do find that coming off meds gives me the worst side effects. I hope yours go away soon.

Good luck.

Emma

7

I take venlafaxine ER 75 mg each morning. I think it helped raise my migraine threshold but I’m not sure how much. I take other meds as well. Yeah, you feel weird for a few weeks but the feeling passes. My doctor wanted me to go to 150 mg each day. I tried that but just got more side effects with no benefit. Titrating down was no fun. Effexor can cause insomnia so take it in the morning. It can make you feel “morning sickness”, so ask for a prescription for Zofran. If your doctor thinks you’re crazy, find another one. I love Zofran and don’t know why it’s not over-the-counter. I take Zofran rarely - before flying, if there’s a big storm front coming in, etc.

37.5 mg each day is a good starting dose. I’ve seen other people recommend breaking the capsule, but my doctor thought that was a bad idea, and I agree. An extended release capsule is not designed for breaking and portioning the drug.

Like you said, give it a good try. If you decide to stop taking it, you have to titrate down SLOWLY. Keep your eye on the clock to gradually increase the interval between doses.

8

Thank you, Emma! 37.5 seems like such a small dose, but if it’s helping you, great!

Dizzymingo–thanks for all the info and advice. I am taking my 37.5 (starting dose) in the morning and so far no problems, no nausea. It’s only my fourth day but actually my stomach feels BETTER–I think the Strattera, which I stopped at the same time I started the Effexor, was actually making my stomach slightly yucky in the mornings, because now it feels fine. Unfortunately my hunger has picked up, too! I guess the Strattera was checking that slightly.

Thank you for the advice to titrate down slowly if I have to stop the venlafaxine. I have heard it can have awful “discontinuation” effects. I will definitely remember that!

However, so far so good. My head felt bad the first three days–more likely from the Strattera-discontinuation than the Effexor-starting–but today it feels MUCH better. Unfortunately, the FATIGUE and ACHING in my body about doubled… again, I think the Strattera was helping that a lot. I’m just wiped out, like I have the flu.

Hopefully the fatigue and aching will return to their normal levels soon. Maybe when I get to 75 mg of Effexor next week it will improve.

Thanks again everyone! :slight_smile:

Nancy

9

I titrated slowly up to 75 mg/day and took that for about 3 months. I took it at night, as I found it helped me sleep. It left me feeling a bit groggy in the morning, but other than that I didn’t notice any large positive or negative differences. I ended up coming off it because I had to get insurance independently and they were going to charge me 15% extra just because I was on venlafaxine! Anyhow, I titrated slowly down and didn’t have too much trouble coming off it. Though, my feet/toes have been tingling ever since (8 months ago!) and I’m blaming the venlafaxine withdrawal. (My neuro doubts there’s a connection. She did a bunch of blood tests, but didn’t find any other cause. Who knows. Annoying, regardless. And I like being able to blame something for this darn tingling/numbness.)

10

Erika, thanks for the reply. Sorry you did not have more success with the venlafaxine and had to go off it. Sorry also about your tingling toes–that’s a bummer, especially when they can’t find the cause. Doesn’t seem like it could last that long if it was just a withdrawal effect… who knows.

I bumped myself up to 75 mg yesterday (after just four days on 37.5), as I was horribly fatigued and achy and thought maybe a higher dose would help. (The aching and fatigue which I have all the time got much worse when I went off my previous med, Strattera, the same time I started the venlafaxine last week.)

So far so good. I actually seem to have had a decrease in the motion sensitivity/dizziness. So I am cautiously optimistic that this med will make a difference for me. Still way too early to tell for sure.

Nancy

11

H Nancy,
I know Dr. Hain is a big fan of Effexor, and he recommends that you start with 1/3 capsule (37.5mg) by sprinkling it on applesauce, and do that for a week…then 2/3 capsule and then finally a full 37.5 capsule at 3 weeks. He prefers the actual Effexor, and not the generic, but I guess that would depend on your doctor and insurance.
I am not sure why you are coming off Strattera? There really shouldn’t be a reason to, unless you are finding it stopped working. Since Strattera is basically hitting norepinephrine, and Effexor only hits serotonin at that low dose, it should be fine. Of couse you could speak to a pharmacist since doctors usually aren’t the best at that info…
I would find a doctor who is a partner with you in this, and not one that doesn’t support you being your own advocate.
:slight_smile:
Good luck…so many people do well with it!

Kelley

12

Hi Kelley, thanks so much! Wow, I’m surprised to hear that Dr. Hain recommends such a slow step-up approach. I don’t know if I’d have the patience for that! All I really had to go by was the official Effexor “prescribing information”, which recommends starting at 75 mg (for the FDA-approved conditions, of course, not migraine), although it says some patients could start with 37.5 for 4 to 7 days–which I did (four days).

I guess I have my pharmacy preferences set up to automatically get a generic if it’s available. However, the sheet that came with the Rx said the retail price was something like $126! though I only have to pay $5 with my insurance. I looked at venlafaxine prices online and it appears the $126 is more in line with Effexor itself rather than the generic, which is supposed to be relatively cheap! I don’t know what happened.

I wanted to try stopping the Strattera largely because of cost–due to a change in what we pay for drugs under our insurance at the beginning of the year, I started having to pay 50 percent of the cost (no generic for Strattera and none in sight), which meant $123 a month rather than $25. I hoped to replace it with a medication that still had an effect on norepinephrine, which is why I wanted to try Savella, and also one that might help the low-level migraine activity I know I"m still having. I also thought that after 9 years of taking Strattera, I was a bit curious what would happen if I went off it–would I revert to the horrible foggy days of yore? Or was I going to have keep taking it all my life to remain reasonably productive?

I did try asking the pharmacist what level of norepinephrine effect the venlafaxine might have compared to Strattera, but he was not much help; didn’t seem to get what I was asking or else simply couldn’t answer my question very well. When you ask unusual questions, people are often at a loss.

Early indications are this MIGHT work fine for me. Coming off the Strattera entailed several days of weirdo spacy-dizziness, but that has passed; the terrible fatigue and aching seem to be improving although still worse than “normal”; the motion sensitivity seems noticeably improved (although somehow I feel it could come crashing back at any minute) and my head feels noticeably less “whooshy”; and I am sleeping long hours like a log! Which normally would ALWAYS, ALWAYS make the motion sensitivity and resulting “fog” very bad, but surprisingly, it has not! (So far.) I run around at work turning and bending but feeling a surprising improvement in steadiness.

As for the concentration, I do feel a difference having gone off the Strattera; it’s hard to explain how–but it’s really not bad now–just a little different. It’s acceptable (so far).

Otherwise I’ve only noticed increased hunger (darn), a bit of clumsiness (maybe nothing), and a few ups and downs in my stomach, but hopefully that’s all just temporary. The fatigue is the worst thing. I think the Strattera must have been masking a lot of underlying fatigue.

I’m far from declaring success (only one week into my Great Experiment), but as Bill Murray says in “Groundhog Day” when he wakes up and it’s tomorrow, “Something is different… anything different is good.”

Re the doctor, I don’t have the heart to try changing doctors again right now. We’ll see…

Thanks for your support and great info, Kelley. I really appreciate your knowledge and practical advice!

Nancy

13

Nancy
The Effexor does start affecting norepinephrine around 150 mg. I take cymbalta, which hits both serotonin and NE more evenly at any dose.
Nortriptyline another Med that hits your NE and very good for migraine for many people… And generic!
You’re more than welcome!
Good luck to you
Kelley

14

kelley how are you doing on the cymbalta and your other meds? Are they still working well? How long have you been on them for?

15

Sarah
Hi, yes still taking them. It’s been about 4 years for cymbalta and 3 for phenergan and Klonopin. Most days I’m in the 90% and above.
Kelley

16

thats wonderful kelley- glad to hear things are still going well. you should post in the success stories section!!! have you ever had to up the dose of the cymbalta or have u been on 50 mg the whole time?

17

HI Sarah,
Yes, I know I should, but I have a fear that my meds will stop working and I will have a relapse…some stupid superstition!
Ive not had to up my Cymbalta, but a few weeks ago I tried to because I was dizzier than usual and feeling more depressed…and I felt worse…so I just kept it back to normal
and eventually things settled down. I had been doing some traveling and not watching triggers…eating whatever I wanted and not excersizing…so! I just cleaned up my act and felt
better. I think as I’m getting older, the hormone component is starting to play into it…drop in estrogen approaching menopause…this should be fun …not!!!
:slight_smile:
Kelley

18

Kelley, glad you have had success with the Cymbalta!

Yes, there are so many factors that might be affecting how we feel on any particular day or stretch of days, and you don’t always know for sure why or what to do about it. Always wondering. Glad you got back to “normal.”

Yes, I’m sure the hormones do play a part; everything started going wacky for me when I hit perimenopause in 1999. Part of the problem was not knowing why I was dizzy (doctors never suggested migraine nor paid any attention to my theory of it) and having the waters muddied by other neuro symptoms and hearing loss. But eventually things more or less stabilized as I figured out what made me feel better or worse.

Thanks for the tip on nortriptyline. I’m a little confused because it’s classified as a tricyclic, right, not a norepinephrine reuptake inhibitor? But I guess it works that way anyway? I don’t know whether adding a small dose of nortriptyline might be helpful, as apparently I won’t be getting that effect from venlafaxine unless I go way up, but of course it’s still too early to tell anything.

Today I woke up considerably dizzier than usual, but I suspect it’s due to either a crick in my neck, a rising barometer, or more likely an oncoming virus that’s making the rounds at work. I’m not 100 percent sure, but I seem to feel worse (achier, dizzier) when the barometer RISES–just a sneaking suspicion. I just found a weather site that tracks the barometer, so maybe I’ll be able to prove or disprove that theory eventually!

Everyone take care,

Nancy

19

Nancy,
I’ve been on Venlafaxine ER since May 2004 and I tried a new medication and it didn’t seem like it was working. So I stopped taking the new medicine and went back to taking my Venlafaxine ER. Sometimes I hear voices or giggles that aren’t there. I never expreinced this before should I try to take the other medicine. Do you think Venlafaxine is hurting me?? Or helping me?

                                     Thank You for taking time to read my concerns.
                                                                    Andrea Pringle   brianbonello17@yahoo.com
                                                      (352)476-2385                 (352)422-0339
20

Hi Andrea. I cannot say whether the venlafaxine is helping or hurting you, or why you are hearing voices that aren’t there. If you haven’t talked to your doctor about that, you definitely should.

Hopefully you have thoroughly discussed with your doctor the reason for trying the new medication and told your doctor you went back to venlafaxine.

I only took it for a month. It turned out not to help me, and I switched doctors and switched to nortriptyline, which I still take and has been a great help.

Please talk with your doctor about hearing voices and about which medication you should be taking. Good luck!

I don’t read this board anymore so I may not see replies–I only got an e-mail notification about your message.

Take care,
Nancy