It’s an opinion. I think it’s there to take or leave as you please? To be forewarned is to be informed, no?
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I still think we need to be cautious about telling people to take this med or dont take that one. None of us are medics. I had very bad experiences with Amytriptyline, Sertraline and Nortriptyline but clearly judging by the number of members on the forum who did very well on the Tricyclics, I was an outlier.
I wouldn’t want to deter anyone from trying them just because they didn’t work for me. People who take a med, find it works and they get better dont tend to join forums like this one. They’re out there living life. We tend to hear from people who cant find a suitable medication or who aren’t getting better.
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I agree; having an opinion is fine, but telling someone flat out to not take a particular drug seems akin to medical advice, which doesn’t seem right.
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I don’t think @sandrapippa was claiming to be a medic. I thought it was a reasonable contribution to the discussion.
Let’s not equate providing an opinion and a perspective with forcing others to agree.
I have heard similar things about venlafaxine but do not have personal experience to have an opinion.
We should welcome reports from people who’ve actually experienced the drug first hand.
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There is a difference between saying that you had a good or bad experience with a drug and instructing others not to take it. Notice I have never once said “take venlafaxine! you have to get on it!” despite my having an okay experience with the medication so far.
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I think if I’d had such an alarming experience I might say the same. Let’s move on please
Okay then here’s my Opinion: I would encourage everyone at the beginning stages of their illness to follow the clinical expertise and be data driven over anecdotes and stories. As I said, there’s no such thing as a perfect drug; optimize for what is most likely to bring you success and comfort alongside the guidance of a medical professional.
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My take on whether to take a particular drugs is you are facing two doors. Door #1 is life with VM as it currently affects you, and behind Door #2 lies the possibility of getting better along with some medication risks. If VM is affecting you badly enough, the choice will be pretty clear.
As was stated above, all drugs that have a chance of helping VM have a long list of possible side effects. By the same token, VM ain’t no walk in the park either.
I never take medications for trivial issues. But sometimes we are forced into a corner. By all means, if you are doing OK then it is reasonable to hold off on any medications. I went 15 years with VM w/o any meds. I was quite limited, but able to function well enough. A couple of months ago, the situation changed - the disease grew some serious fangs.
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I was deterred from trying Topamax because I read so many negative views on it, even though my Neuro said it could be very helpful for vestibular issues. That was last year, who knows if I’d tried it and it had worked I could have saved myself months of unecessary suffering. Its human nature to emphasise the bad, we rarely hear the sucess stories.
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Just to be clear, my issue with Venlafaxine is how difficult the withdrawal was for me. I may be more sensitive to medications than others. People who aren’t necessarily sensitive to medications might never have those same issues. I was in an FB group specifically for people with horrible withdrawal symptoms from Effexor. Many, many people there had the very same experiences I did, some for years. Some, like me, got brain zaps when they’d never skipped a dose and weren’t trying to taper off at all. Their doctors often had them up their dose then. And then they were basically addicted to Effexor. I’m not trying to be an alarmist, just telling my story. Anyone who really wants to try this drug will have to decide for themselves. Many of us with these experiences know a lot more about what it’s like on these drugs than the doctors who prescribe them. There are likely many who don’t have a bad time. I’m glad for them.
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If anyone has suggestion on how to increase the Venlafaxine slowly, let me know. The first two weeks, I took a quarter tablet and then the third week, added another quarter every third day. This week I’m alternating between half pill and quarter pill with the goal to do half pill daily.
Not sure if I’m doing anything right though, as since yesterday I have a terribly nauseous/sick head. I don’t know if this is a regular side effect of this drug, or if I’m just dragging this out. Scared and certainly feeling not good about all the sickness from morning to night. Went in the store for a few minutes this afternoon and horrid nausea, same with sounds and smells…feel like it’s bringing on a migraine. Maybe this is normal?
thats not normally how you’re supposed to uptaper on meds. you have to take the same amount every day and taper up in steps. its not good for your body/brain to be experiencing constantly fluctuating levels of meds like that.
i weighed them and split the capsules open to count beads…
I’m on Ven, been on 112.5mg for a while now. I titrated up slowly, started on 12.5mg and increased by the same each week. I felt very nauseous for a few months. I know its the medication as I’m not prone to nausea even when I get a migraine.
The SNRI class of meds are well known for causing nausea. Its supposed to get better as you get used to it but I would say it took a good 5 months before I stopped noticing it. Now its not an issue any longer thankfully. Hope it gets better for you.
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So the visit before last with my Neuro PA, I was told it was okay to take the medicine every other day. I was on the 20mg Duloxetine then. But after three weeks of headaches and deterioration, he changed it to the Venlafaxine. It was my next go to choice because of the research I read. 75mg seemed like a lot after the 20mg of Dulox, and I’m glad I started with a quarter pill. However doubling it to half every day would have been too much, so I decided to up it slowly alternating between a quarter and a half. That is how downtapered Nortriptyline and it went very smoothly.
It will take me a while to get to the 75mg.
Did you notice that it was helping you with your VM symptoms despite the nausea?
It did and has helped a lot which is why I stuck with it. Especially with the visual vertigo.
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I take 112.5 mg AM and the same PM.
I tried more but it made no positive difference. It just made my constantly want the toilet.
I built up to this volume and it has worked amazingly for me. Only side effect is an increased appetite. This is okay to manage.
I have taken it for five years. It took a while to ‘soak in’ to feel the full benefits. I’d say three to four months.
If I compliment this with migraine diet, regular sleep, reduced stress and moderate exercise I operate at 95% most of the time.
My symptoms are chronic and if I feel them increasing then I STOP and slowdown to basics. Few days later it is old news.
I really struggled when I’m ill with colds etc. The anxiety would drive me crazy. It could last for a week to ten days. This doesn’t even bother me now. I stop, listen and wait for the storm to pass. Put myself first and be kind to myself.
There’s not one item that I’m aware of that does the most to manage the VM. Instead it is lots of little things together to keep the jug from over flowing. However, the meds definitely make the other things easier to do.
Hope this brings some positivity and belief to others.
Best.
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