I have the exact same issue re: light sensitivity. It has been constant for 18 months. But I haven’t spent time in a dark room, I rarely wear glasses, honestly just for fear of making it worse. I would wear the FL 41s if using the computer. Karen you’re like my symptom twin. Off kilter, and sort of like I’m not seeing the world clearly. I feel completely out of sync. And the brain fog… goodness. It’s overpowering.
I got the Venex! You guys are lifesavers. So much easier to take. GP very supportive. The initial migraine surge on 37.5 I think has calmed down around 60%.
I am going to give this med a really good chance and not give up if things get rough. Keep going!
Thank you all for the advice and feedback, v helpful, and comforting.
Delighted you got the beads, hopefully your symptoms start to improve. Lots of sleep and be kind to yourself. If it’s any help to you I did all the nutritional stuff (avoided caffeine, chocolate, cheese etc) and bought loads of supplements and it didn’t help my symptoms at all so don’t be disheartened if the same happens to you. My latest neuro told me I have to sleep, do cardio exercise (promotes brain changes) and avoid stress and let the meds do the heavy lifting…
I said all this for many years - like a decade and more. Unfortunately looking back I have long been convinced it was my lack of a headache stopped me completely from getting a diagnosis. Fourteen years later Migraine specialist neurologist said that head pressure is the migranous connection. Surprised me. Helen
A little update - now up at 37.5mg. I have to say, I feel pretty dreadful. Tinnitus is really loud. I feel reasonably positive now that my symptoms are down to neurotransmitter imbalance.
I am titrating upwards every 7 days, but am feeling cruddy. Being stuck indoors with a broken foot probably isn’t helping
I just wondered is it normal to titrate upwards weekly and experience continual worsening of symptoms? With no let up? I’m still going to keep titrating upwards regardless. I’m just too stubborn to give up
It’s quite usual with Effexor to suffer increased symptoms at each and every increase. Consultants do often suggest people should remain at each increase until symptoms settle before further increasing. A week between may be too fast for you. Maybe you need to try monthly increases or every third week.
Hi, I’m a fellow effexor user and my journey up to 150mg took about 18mths. My body reacted to every step up of 12. 5mg and my neuro told me to stay on a dose until body and brain tolerated the increase. I’d suspect your going up to fast, stay on this dose for a few weeks, I once stayed at 75mg for over 8 weeks and there were times after 2 weeks of sticking it out I had to drop down to settle symptoms in order to go back up again. Lots of patience required with this med but for me was worth it. Best of luck in whatever you decide to do. Take care x
Thanks v much for the reply. I think I’ll reduce back down to 12.5 x 2 for a bit longer. 12.5 x 3 is rough! I also was just taking the capsule with the 3 mini pills in whole for the 37.5 dose, I just wonder does it absorb differently than if I took the 3 little pills out and took them without the capsule. I think I’ll go back down to the 12.5 x 2, then when I go back up to 12.5 x 3 / 37.5, take the 3 little pills outside of the capsule. Just a hunch.
I know you mentioned before that the Venex made a decent dent in the photophobia, do you mind me asking around what dosage? Did you have any visual snow at all?
Hi Claire, I got most relief at 75mg,this dose was a turning point for me, I had some relief esp with pain on lower dose but at 75mg I started to experience relief with vestibular issues. I didn’t have visual snow I think it’s the only symptom I don’t have.
On taking the pills without the capsule, this was the only thing my pharmacist asked me not to do, she said its the capsule that helps with a controlled release. Maybe have a chat with your pharmacist.
The one thing I’ve learnt with tirating up is set your path out and stick with it to see if it works. If you change it around quickly your body can’t get a run at seeing if it can tolerate so in this case for next 10 days maybe just drop to 25mg in capsule and see how it goes. Its a clear way to test if the dose is better, if you remove capsule too… How do you know what’s working? This is why I call out patience as critical and it’s the path I’ve had to take, almost drove me mad at times the slowness of it but big drugs require it. Have a think about it, its just a thought for you. Best of luck x
That makes total sense - I had so far been taking out the 3 mini pills and taking them, not in the capsule. Hindsight…
I dropped back down to 25mg last night, I’ll take that in the capsule for the next week or two and just wait it out.
Honestly I’m just happy to hear experience from other people in my situation who are doing better. Mightn’t be 100% but any improvement for me would be a massive step forward.
Just re: the capsules - I find them really hard to open. Is there a knack to it!
Hi Clare
When I got to 87.5mg there was a huge improvement in the photophobia but this can happen at lower doses for some people. My advice would be to Stick with 25mg for a few weeks and then go up again - unfortunately it’s all trial and error and in the end Ven may or may not suit you - the only way to know is to see how far you can get without intolerable side effects.
Unfortunately there isn’t a knack to opening the capsules - I found it “easier” if I kinda twisted it at the joining first and then pulled it gently apart but it was pot luck!!
How many weeks in total are you on the Ven now?
Hope this helps
Mav
I’m afraid I’m going to have to stop the Effexor. The tinnitus is out of control, utter nightmare. Despair has sunk in.
Did your tinnitus go back to baseline after you stopped Effexor? I may as well be sat next to an airplane engine all day and night. Unbelievable noise.
Completely fed up with this. Thought I was doing the right thing. Feel like my life is just ruined TBH.
Hi Clare
I am sorry to hear that you are having such a reaction with Effexor. If you haven’t already tried Propanolol it might be worth discussing it with your GP to see if it’s an option. It’s one of the most widely used meds for our condition - be sure to ask for the sustained release version. In my experience i took 80mg for 6 weeks and then increased to 160mg - it does take time to work. It made me very tired to begin with.
Please don’t despair, I know this is tough, but you will find meds that will get this under control.
Stay strong and keep fighting the fight.
Best of luck
Karen
I’ve tried Lexapro, Cymbalta, Effexor and Amitriptyline and all of them gave me raging tinnitus. It took between 2 and 14 days after discontinuation for the tinnitus to return to baseline (Effexor specifically took about 4-5 days, Amitriptyline was the worst, with 14 days of hell before things returned to normal). It totally sucks.
Ask your GP/Neuro about Verapamil, Propanolol, or the new CGRP medications. You might have better luck.
Some other points from my experience worth raising as you consider what to do next:
I did have some regret for not trying to “push through” to see if my brain got used to it and the tinnitus returned to normal.
My tinnitus is from pre-existing high frequency deafness. I got my hearing tested 5 months ago (when this all started for me), and today. Both audiograms are the same, which means all the drugs I tried did not have an ototoxic effect on my hearing. That’s good news.
I think some of the increase in tinnitus volume was from the medication, but I’m almost certain that a lot of it was emotional – a fear that I was damaging my hearing, and a fear that it would be permanent. Based on today’s test (and the fact that my tinnitus is back to baseline), I think that emotional response was irrational.
I did the best on Verapamil (but, ultimately my tinnitus spiked again). After 8 days on it, I had the first “non-dizzy” day in 5 months. It was the next day that my tinnitus spiked. A real shame.
Comparing today to 5 months ago, I’m much better, just on diet, lots of exercise and vitamins despite medication failures. There is hope even while you’re figuring out the meds.
My next treatment option is Emgality, which is a newer CGRP medication. It doesn’t have the same mechanism of action as the rest of the drugs (which mostly affect neuro-transmitters). I’ll be giving that a go tomorrow.
I feel the exact way about regret. I’ve Now put myself on 12.5mg of Effexor. GP has given me Clonazepam to take 3x a day.
I don’t think it’s ototixic either. Serotonin is suspected to cause tinnitus. I had wondered that with Effexor being an SNRI, once it reaches a dose where norepinephrine kicks in for people (it does this on a higher dose, serotonin on a lower dose), would that change things?
I’m going to try and stick with it at 12.5mg for a while and just see what happens.
I’ve low blood pressure as it is so weary of trying anything that could lower it further…
I’m not going to give up on Effexor yet. I’ve gone back down to 12.5 and am staying at that dose, with Clonazepam 3x a day.
I’m going to be sleeping through the remainder of this Coronavirus debacle! And healing my broken foot…
Sometimes you just want to pack it all in and decide to just sit and eat chocolate cake all day and to hell with it. Yesterday I felt like that. Chocolate cake was had… bad.
And may I ask …. are you planning being awakened by a gorgeous looking Prince Charming or just going down the more mundane route of setting an alarm on your phone? Could be a long sleep I fancy. All the best with the reduced dose. Hope it works out for you. It can certainly be a difficult drug to have to take it seems although many achieve success with it in the end.
