I just wondered had anyone experienced worsening of symptoms when they started on Effexor? I’ve taken 5 doses (37.5 extended release) so far. I have also stopped Tramadol for the last 5 days, which I was on for 2 years (yikes), but lowest dose of 50mg.
My tinnitus has gone nuts, disequilibrium this morning is very noticeably worse, as is visual snow and I think photophobia, altho hard to tell isolating indoors!
My own (uneducated) thoughts - there’s a serotonin imbalance in my body. I had neurotransmitter testing done via Genova labs and serotonin came back very low. I was taking Tramadol daily which gave me “false” energy etc. I’m not sure if/how it affected serotonin on a daily basis, probably with a spike and a crash every day, not good for migraine brain.
Anyway I just wondered had anyone else initially experienced worsening of symptoms with Efexor?
Virtually everybody has increased symptoms on starting Effexor. You will find many examples if you try using the site Search facility. Many other drugs do the same. In addition most migraine type brains are generally ultrasensitive to many things including medication and often just to any type of change. Therefore it we MAVers tend to have a double whammy. This is why people are usually advised to start slow and low. It should minimise side effects. Unfortunately many doctors do not recognize/are unaware our characteristic increased sensitivities.
If I read you correctly you are seem to have gone straight to quite a high dose. Most people actually start on 1\3 of a 37.5 tablet and increase weekly. You need to research this a bit more. Search out on this site. Key in Effexor or Venlafaxine or find Dr Hains instructions on Venlafaxine. Sorry but I am running in a dinky Android tablet at very low broadband speed so cannot currently offer you a link but it has all been posted many times previously and is certainly worth consideration if struggling. Helen
Omg. Thank you so so much for your reply. I’m in a Ireland, and relying on my doctor who knows nothing about vestibular migraine. I just showed her Hain’s flowchart and she gave me a script for 37.5. There isn’t a lower dose available here and it comes in a capsule. It does say in the med leaflet you can open the capsule and sprinkle the contents on food. I’ll call my doc on Monday and ask her what I should do to titrate downwards, and try and split the contents of the capsule into 3… ugh, nightmare.
I was really lucky to get an appointment with Prof Goadsby in a London for April, only to have it cancelled due to COVID, so I currently have no doc with any experience of this and am telling the GP…
I had been on both Lamictal and Topamax at the same time - horrified to read I shouldn’t be on 2 meds in the same group. I came off both, and am trying to start afresh at the beginning of Hain’s chart. I searched for Efexor on here but didn’t find much - only to realise its Effexor with two f’s in other countries… d’oh!
Helen I just came across another post of yours - are you in Ireland too? Sorry to stalk you! I saw in your post you mentioned it was possible to get the 37.5 capsules split into 3 in Ireland. I’m on Efexor capsules with the beads in them, the extended release ones. I’m loathed to use a generic version. Any thoughts? Thank you SO much, reading your posts on here is giving me hope! Thanks for taking the time to reply, I really appreciate it. Feel like a complete newbie at this.
On the plus side, I feel like I’m winning on coming off tramadol. Not ashamed to say I’ve become addicted. Mood-wise yesterday I did feel motivated and actually accomplished quite a lot for me. Tidied my room, answered some emails (with migraine glasses on). Some horrid individual stole my custom made migraine glasses out my handbag in Dublin. They were amazing. Now using the FL41 lenses. Not quite as good but doing the job…
Hi. No I am UK based although I have as it happens Irish ancestors on my mother’s side. Don’t expect an ordinary GP to know anything much about MAV. Very few do. You will get more help in here believe me. As I am stuck currently with very dodgy broadband cannot assist as I would wish therefore I will invoke the assistance of our Irish members who conveniently also take your same drug. @Mav Karen and @nin Elaine who will help you? Meanwhile use the Search facility to find Dr Hains article on Venlafaxine Which is Effexor full instructions including taking counted brains in applesauce! Back in a bit. Helen
Sorry you are having a difficult time. I started Venlafaxine in Dec. I initially took 37.5mg and it was to much to start with. As Helen pointed out, go low and slow. I took 1/3 by counting the beads and taking them with a glass of water. I am currently at 56mg. Each time I increase the dose my symptoms increase for a period of time. Some side effects are to be expected. It has worked well for me. I still need to go higher due to visual vertigo crap.
Thanks very much for your reply. Did you go down from 37.5 to 1/3 of that immediately? Or titrate downwards a bit before going back up? I’m thinking I’ll do the latter. I did try Efexor before, but certainly gave up far too quick - and unfortunately when I was in hospital for an op they forgot to give it to me for several days. At that point I’d had it. Withdrawal during brain op recovery - I thought it was side effect of brain surgery! I think microdosing when going on and off this drug is definitely the way to go. I had nightmares and sleep paralysis when I stopped Efexor 37.5 before - in hospital with a new shunt in my brain. Don’t recommend cold turkey!
Wow, that’s quite a story. I hope the surgery was a success.
I was on 37.5mg only for three days before I couldn’t take the heart palpitations. I immediately went down to 1/3 capsule. It didn’t affect me, but it was only a few days and we all may react differently. Agreed, go slowly.
It was a success in that it got rid of medication induced intracranial pressure - which I thought was the cause of my 24/7 chronic vestibular migraine. No improvement since surgery, and looking back on it, I’ve probably had mild migrainous symptoms for years without really recognising it. I’ll probably have the shunt removed at some point, it’s done it’s job and I don’t think the intracranial pressure will come back without it. My neurosurgeon will switch it off at some point and test out that theory!
It was a major disappointment to go thru the magnitude of that surgery and to have it have no effect on my symptoms whatsoever.
But - it has forced me to take a good look at my lifestyle. From a functional medicine perspective, my gut health & immune system is trash, I’ve dysbiosis & SIBO, hormone imbalance, nutritional deficiencies and bad anxiety - something I’ve had for years.
In essence, I feel like I broke my brain! I developed tinnitus, then months later woke up off kilter, few days after that the photophobia and afterimages kicked in. Been like that 24/7 ever since. Trying to fix it, one baby step at a time. Delighted to have found this forum.
Hi, welcome to the forum. Based in Ireland too and so is @Mav. After much research by mav, we found that this version is made and available in Ireland but you need to ask your neuro for it. We were the ones to bring it to our neurons attention. You can open the capsule and there are mini tablets of 12.5mg each, it’s the only way to go up on effexor really, low and slow. I’ve actually brought it in to show my neuro so he knows what it looks like. Neurons hand out mgs like they going out of fashion with no personal experience of taking these brain altering drugs so I’m an advocate of low and slow. It took me over a year to get to 150mg.
I’m under the care of Martin Ruttledge, neuro specialist on migrane. Hard to get apt but gp referral outlining urgency in that it’s affecting your quality of life might help hurry along apt. I’ve found him a good medical partner to help me find options, let’s me give input.
Thanks v much for your replies. I have a whole load of the Effexor 37.5 capsules - I opened up the capsules and divided up the beads into 1/3 doses… a slight challenge with a migraine!
I took 1/3 of the 37.5mg last night, and thought I’ll follow Hain’s protocol of 1/3 for a week, then 2/3 for a week, then up to the 37.5XR. Starting off at that dose was not a good idea…!
I had an appointment with Ruttledge but I have to be honest and say I was really disappointed. I only got to see him for 20 seconds and he said I shouldn’t be at his clinic in a Beaumont as I’m not in the catchment area, he then referred me to Vincents Headache Clinic, who have no appointments available. And I don’t have a headache. Ruttledge said I’d tried all the meds (I’ve hardly tried any) so I should get botox and Aimovig. He obviously didn’t read my patient file, or read the wrong one - I’m not a candidate for botox, it’s too dangerous, I have a shunt in my scalp and tubing going down my neck so botox is a big no due to risk of infection at the injection sites.
So I’ve fallen thru the cracks in the Irish system - I managed to get an appt with Prof Goadsby in London, which was then cancelled due to COVID.
I’ll eventually get to see Goadsby but in the meantime, want to actually try a few options so I have some feedback to give him.
How are you doing meds wise? Thanks again for your replies
Hi cjmca
I am so sorry that you are a fellow sufferer but you will find great support here. I too live in Ireland and I have been suffering since Sept 2016 - main symptoms of intense head and facial pressure 24/7, constant dizzy and floaty drunk feeling. Tried loads of meds but am having great success at the moment - started Venlafaxine XR at 12.5mg and titrated up to 150mg by increasing my dose by 12.5mg every week. I did suffer some additional symptoms with each increase after 87.5mg but I pushed thru it. I know Hain says that 37.5mg is an optimal dose for migraine but I didn’t start to see real improvement until I reached 87.5mg. Venlafaxine has pretty much killed off the constant drunk floaty feeling - I am now approx 7 months at 150mg. However by the end of last year I still had a nagging pressure in my head so my neuro added in slow release propanolol starting at 80mg and I have now titrated up to 160mg and have seen additional improvement in head pressure.
You could ask your pharmacist to source the Ven XR that both @nin and I are on - it’s the one in the picture that @nin posted above - this will make your life so much easier. It is very hard to find a neuro or GP in Ireland with headache experience - I went privately to see mine it was expensive but worth it. You could call the Migraine Association of Ireland they might be able to give you the number of a GP in your area that deals with migraine. In the meantime this document is a good read
Bummer, sorry to hear you had that experience. Great you can get to see Dr goadsby. There is a headache clinic run by Dr Mary Kearney, think it’s in naas but if you Google it might advise.
My meds are 150mg venlafaxine and 120mg pp, between both they are helping me, I’d say venlafaxine helped with the vestibular issues and nerve pain but propananol really has helped with the actual migrane headache and the thundering impact of that. My primary trigger is hormones so I’ll be on these for years yet. I’m seeing neuro in May well all covid dependant of course. I’m thinking of trying to get to 160ng like @mav but found it hard getting to 120mg. It’s all trial and error, my long term plan includes almovig when it becomes more publicly available. Hope you’re having a good day.
Thank you so much for your reply Karen. I’m finding the Effexor is making me incredibly tired even on 12.5mg, I’m sleeping an awful lot during the day. My brain feels like sludge. Did you find this at all?
I’m going to see if I can get the pills you mention instead, counting beads would do anyone’s head in, nevermind a migraine head!
I also have photophobia and tinnitus plus visual snow, all of which have got worse since I started on Effexor, but I’m going to stick the heck with it. By the time I get to see Goadsby I should hopefully be able to give him some useful feedback on this med.
I’ve also linked in with my college (I’m studying Nutrition & Health Coaching), and did a consultation with a Nutritional Therapist. It was eye-opening. Over the course of the year they want to treat my SIBO, gut dysbiosis, shot adrenals, support my liver, and a whole other bunch of stuff that is lost on me.
I’m hoping via medication and lifestyle changes, I’ll slowly chip away at this.
The only thing that has helped me so far is swimming in the sea. I first tried it in March down in Sandycove in Dublin. For 5 minutes I forgot I had a migraine. Probably because I was so cold But I felt less brain fogged the rest of the day and was able to do a few productive things on the neverending to-do list.
Thanks a mil for the reply. Do you get things like photophobia or tinnitus at all?
I feel like an awful person here saying that I don’t really get headache. So I was never really too sure if referral to a headache clinic would help me. But the vestibular symptoms - being off kilter all the time, tinnitus, photophobia, visual snow are all 24/7 the last 18 months.
Am going to give the Venlafaxine 12.5mg mini tabs a go instead of the Efexor granules which are a nightmare to split, and I’m not sure it’s a good idea to take them outside of a capsule.
Just waiting to hear from my GP to chat with her about the plan to slowly taper.
Hi, yes I get both, in fact I’ve experienced everything really and more recently visual aura so even on meds it continues to morph. Yesterday for example I was having a great day and sitting eating lunch when my hearing just turned off in my right ear followed by a loud ringing sound, thankfully it left after a few mins. Pre venlafaxine this would have been ver regular but now its occasional usually when I’m doing too much physically and I am with kids, hubby home and dog. It’s mad house!! On light, yes was dreadful but venlafaxine made a huge dent in that, I still wear my Amber wrap around glasses when it’s very bright. Mary Kearney is well connected to the migrane association and I met her at a self help group. She’s very familiar with non headache migraines so worth thinking about. Keep us informed about Prof goadsby, he’d be my back up plan if anything went wrong here.
Hi Clare
Yes Ven will make you really tired in the beginning - most likely because it is changing serotonin levels in your brain…this will pass as your body adjusts to it. I found that a 20min power nap during the day worked wonders - sleep if your body needs sleep, I did this often in the early days and it helps to “reset” the brain so that you can dim down the symptoms for a few more hours. I take my meds in morning as otherwise it gives me insomnia. Oh yes the photophobia was awful - I felt like my vision was permanently off - it felt like I had walked inside after being in bright sunlight - you know that feeling where you can see but not clearly…except this was ALL day long, the naps helped with this so did just sitting on couch with eyes closed for 5 mins. I too had a form of tinnitus as I increased the Ven - it was the sound of my heart beating really loud in my left ear - this went on for many weeks but I no longer have it. To be honest I had tried and failed many meds and so I was determined to stick with the Ven - I just kept increasing by 12.5mg (one little bead) every 7 days and I told myself that I was going to just push thru unless the “side effects” of the increase were absolutely intolerable. I only faltered once when I got to 87.5mg I think I might have stayed at that for 10 days. My neuro has actually left her practice and moved to Cork otherwise I would recommend her to you - I know @nin personally (we have been in the trenches together on this for 4yrs) and if she says that Dr. Mary Kearney is a good one then you can be sure she is…we have learnt that you have to find someone who specialises in migraine and not just a regular neuro - it’s not easy to find someone in Ireland but there are ways to dig up this info…
You also mention feeling off kilter - I too had this really bad, like I was really drunk all the time, my head was “swimming”, brain fog was awful too I literally couldn’t think straight. I too did not have a headache - no throbbing, no pulsing, I couldn’t point to where my head hurt - it was just a constant head pressure as if my head had been “inflated” and the minute I would move at all I felt drunk, like I was observing the world from behind 10 panes of glass - here but not here if you know what I mean - disconnected.
Hope this helps - feel free to ask me anything at any time, I know how hard this is and how difficult it is to make meaningful progress.
Karen
It’s so odd, those little symptoms that I never would have recognised as part of migraine - I get that too, the sudden feeling of loss of hearing then whiney tinnitus as it returns. I will definitely keep Mary Kearney in mind - thank you
But I felt less brain fogged the rest of the day and was able to do a few productive things on the neverending to-do list.