So today I wake up with a dilemma regarding my dose on this medication…
I started 112.5mg on the 26th December after 8 days on 100mg. I had spent the month of December moving up quickly from 75mg to 112.5mg. I had an amazing month in November where after 7 weeks on 75mg had 9 crystal clear 100% days and numerous pain free days.
I went up to try nail what I call the vestibular issues such as the wobbly walking and ears and moving up seemed to help albeit slowly.
On the 26th Dec, started 112mg and had 6 pain free days but noticed balance bit off more than usual and ears went mad regarding noise sensitivity even putting forks into the drawer was sore. Then on the 7th day of this new dose my period arrived and since then I’ve been really struggling with top of head pressure, fuzziness which is now morphing into a daily type of headache, low and dull but persistent.
Went to my gp yesterday as not due to see my neuro until the 14th Feb. She feels it might be my body telling me the 112mg might just be too much and that I went up quickly. My past tirations up were much more generous.
So two weeks in on 112mg do I hold on and try tolerate this head pressure and headaches, I’m exhausted this morning with them and taking some acute relief or do I drop back now to 100mg and see do I get relief. It is possible too that its a flare up triggered by my period and hormones which are a massive trigger for me.
Any thoughts and advice welcome, my head is so tired this week, it feels battered and my thinking is all over the shop.
Thanks so much x
Hi Elaine. As you probably already know I don’t take Effexor but Propranolol. Having read as much as I have over the years and remembering Dr Silver’s information sheets (almost sure it was him that said it and think I forwarded it to you because og]f the ‘crystal clear’ ref.), with side effects drop back to dose you were on before you got/increased them for two weeks, then try again. Personally suspect timing not the best with your period might exacerbate increase and understand increasing with Effexor to be problematic symptom-wise anyway. As your GP says you might have already reached your body’s tolerance level. To be perfectly honest I’d say time, diet etc, and a bit of luck!, is what will mop up remaining symptoms rather than more meds. It will taketime. I’ve seen this from my own MAV journey. Personally I found the wobbly walking didn’t start to recede until after my ears cleared, it’s so closely linked, and even then I was looking at improvement over nine months or so. Everybody’s so different and somebody else will probably tell you they hit a higher dose of Effexor and everything calmed completely but that’s not been my experience. I have sometimes thought if I could raise my Propranolol dose I might be lucky but I’m at maximum for me. My pulse must not go lower.
Afterthought: Dr Hain doesn’t prescribe Effexor over 100mg it seems because of difficulty with ultimate withdrawal but he does use Effexor alot and is very complimentary about it, so maybe that says something. Helen
hi Elaine, how do you get 100mg? i know er pills come in 37.5 increments. Do you open capsule?
I had a couple of bad days this week which coincided with my period and son not sleeping. I think it has settled a little. I think even if symptoms are controlled we have still bad patches. I think if 100mg works for you stay there for a few weeks/ months.
Hi Helen, thanks so much for taking the time to read my post and for your thoughtful reply back, really appreciate it. I think my period and timing of increase has exasperated these symptoms for me. When I’ve titrated up before I always had a few days that were worse but as each day passed they improved ever so slightly.
What’s so different this time is that it’s not easing off or improving daily, it’s like groundhog day with same level of increased sympthons so I think my body is telling to hold on and slow meds down.
I think you are right, meds alone won’t cure me I think I was greedily moving up thinking it would be all sorted but looking back now at the results on 75mg this with time and diet I think would have increased my improvement.
I’ll move down to 100mg tomorrow and see how the next few days go. Again thanks for listening am so glad to have you and the support of this forum xx
Hi Laura, I’m attaching a picture here
My capsule of 75mg opens and inside are 6 little white coated hard tablets, each one 12.5mg so tirating up and tapering down very doable. I just remove or add into the capsule. Here in Ireland, you can’t ger 112mg so I had to get 75mg plus 37.5mg and take together. Likewise with the 37.5mg there are 3 little tablets in it.
I always worsen at period too and no doubt the move up on meds has exasperated the sympthons. As I was saying to Helen it’s not settling at all and it’s 2 weeks in. I’ve two young kids and my 7 year old told me this morning that he felt so bad for me cause of my head, I felt so bad.
I’m going to drop back to 100mg tomorrow and hopefully body and head adjusts OK with this. It’s like a lottery… You just don’t know. How happily I’d take my results in November now.
Thanks for the support Laura especially when you managing a few bad days too xx
i see, seems very doable. Dont feel bad about your son’s empathy, he is paying attention and that is good. I hope it settles down for you soon. Here we are for the good and the bad days :).
I must agee with @dizzy3, Laura about your little lad showing empathy. Youngsters brought up with exposure to people with chronic/long term conditions develop excellent life skills far beyond their years and in later life that will prove advantageous to them. Helen
Thanks Laura for the words about my son and to Helen also, some good will come out of all this for them I’m sure of it.
It sounds like you increased a little too quickly, I’d go back down to 100mg for 2 weeks or 6 weeks and see how you feel. Once things settle Id consider increasing again if necessary.
I also believe that initial huge gains can be made with a med, but the small gains at the end take a lot of time (months). This is from my experience with Topamax.
Hi Darren, thanks a mill for reading and taking time to reply. Yes, went to fast and possibly too high, it’s been another hard day so moving down to 100mg tomorrow and if this won’t settle things in couple of weeks I’ll reduce, I hit a sweet spot at 75mgs after some time but got greedy in a way. Appreciate the support. Hope you are doing well and having a good day
You period starting the bad phase tells me it is not the effexor. People expect instant results with 0 breakthroughs. Breakthroughs are common. You can go lower but i doubt its the effexor.
I’m doing great on 37.5 mg generally, maybe 90%. I still managed to have a now unusual craptastic week with a rolling, morphing migraine that spanned 5 days. These drugs are considered successful if they reduce symptoms by half. My triggers were too high (renovations with many fumes, work stress, financial stress) and my MAV habits got slack over the holidays. I agree with Vigs, sometimes we just get overwhelmed. Sounds like you did between the hormones, stress and lack of sleep.
Thanks vigs, it’s just so hard to know, my head and body feel physically worn out after the week, will drop down a little and if all settles will review.
Sorry to hear you you’ve had a bad run of it Emily so really appreciate you taking time to reply. I’ll drop down and see how I go and see how my body responds. My week was busy but normal I guess, hormones are such a powerful trigger so they are a factor for sure. Tomorrow is a new day and a better one for us all I hope. Thanks again x
Yesterday was a better day and today is better still!
Wishing you well with whatever adjustment you opt for. I have no advice but just want to offer encouragement. It is easy to drive oneself crazy thinking and overthinking these things, trying to determine the best path; the available guidance can only get you so far and it can be maddening to be the one making one’s own medication decisions with this condition. I guess the best we can do is try to make a good decision and then just forge on with patience, knowing that another adjustment can be made if this one doesn’t yield the desired result. Take very good care and good luck—
Hi lorissa, you’ve just summed up my internal ongoing maddening dialogue so well… I guess we all experience this every time a medical medication decision is required. I’ll move forward this morning with your words of support and encouragement, thank you so much xxx
I’m sure we’ve discussed this before and much depends on past experience but personally, apart for the investigative and diagnostic angle for which I was very grateful, I find MAV is so subjective, and the decisions others have made on my behalf so poor, I’ve become more and more content to manage it myself. Most of it is trial snd error, not really ‘medical’ in the true sense, and besides nobody else offered. They weren’t that interested. Helen
It is true about trial and error and I suppose I am resigned to it. But I feel like I should be able to expect better medical guidance (here in Canada we pay a lot of taxes to support public health care). It would be one thing if it was a minor annoyance and I was managing everyday life, but my life has been completely derailed by this illness—I cannot work, have no social life, am physically debiliated and deeply affected emotionally/psychologically. If I’m unable to return to work, things will be dire financially, yet this condition is not even recognized as a disability. So for these and other reasons, I wish that the doctors could take a more vested interest in helping me manage and improve my condition, or offer more certainty and directed guidance about what the next steps should be. No one expected me to plan or carry out the surgery on my broken leg last year, let alone to make the decisions about how it should be treated. But with this far more serious, chronic neurological illness, suddenly I’m the one in charge. This is the reality, but I just wish that things could be better and feel that they should be, and it’s hard to be very content when I’m not seeing much improvement and doctors don’t have much to offer. I am not living a real life or participating in life at all and I cry if I think about it. It should be the prime of my professional and family life, yet the months and years are just slipping by and I am like a ghost. So being content to manage this illness mostly on my own is not really that possible for me. It’s great you have found contentment or acceptance of things, but I’m not there, largely because I can’t accept my life as it is now. Trying to maintain some semblance of hope each day.
I struggle with the same. Mostly I just try to focus on what I can do, even if it’s just a bit of laundry or cooking. I’ve even been able to pick up some tiny jobs on UpWork just to feel like I’m at least doing something.