It’s taken me a while to post… whilst I’m not yet a success story, I travel in hope that I’m on the path to it. This month marks my one year anniversary on starting venlafaxine (effexor) and it feels timely to once and for all put it in writing.
First acute balance issues:
Number & duration of acute phase(s):
Any suspicious physical event/trauma leading up to dizziness:
Start of chronic phase:
Age at chronic onset:
Number & type of consultants seen to date:
Diagnoses received (one I’m “running with” first):
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped:
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified:
Any hearing loss in either ear:
Persistent or intermittent tinnitus and character:
Other chronic conditions I’m suffering from:
Medication I’m taking for other conditions:
Any personal history of migraines:
Any family history of migraines:
Any history of ear problems:
How did friends, family, and doctors react to your symptoms?:
(Your current state)
What’s Gone: (what symptoms you had but no longer get)
What’s Ongoing: (what symptoms you still get)
My Worse Day Now: (description of the worst day you get now)
- History of motion sickness growing up and as an adult
- History of tension headaches usually related to stress in 20s and 30s
- History of ibs during 20s and early 30s
- anxious disposition, results driven and a perfectionist, mind never stops, always thinking, planning etc…
Pre June 2016 episodic migraines *:
After my 1st child at the age of 36, I developed episodic menstrual migrane (not every month) and had experienced fleeting moments of lightheadness. Got on with it and sucked it up, sought no medical advice.
After 2nd child at the age of 39, developed regular monthly menstrual migranes, much worse in severity and duration. Sought apt with gyne and meds offered to manage severity of periods. Did not take and opted for homeopathy and acupuncture which offered a little relief. Managed attacks acutely with nurofen and panadol, tbh with the amount I took I should be a shareholder .
Fast forward to June 2016…from episodic to chronic…
After a particularly busy 2 years of work, leading big projects, balancing home and work like with 2 toddlers and renovating parts of house, I experienced a headache at work that changed my life. After much back and forth with doctors, I was sent to a vrt specialist (rare as hens teeth here in Ireland) and after some tests he said that migrane was the root cause, every gp was advising it was just vertigo , none were ready to acknowledge migrane as root cause.
2016 to 2017:
Symptoms at onset 2016 were severe vertigo, where inside my head spun, severe visual vertigo with a lot of issues with screens, reading, perception of depth so stairs were a big problem, floor felt like marshmallow etc… Deep piercing nerve pain in my right ear, my right eye forehead, temple and head… All primarily on my rhs. Severe headaches, nausea and photophobia. Mri all clear. My anxiety levels were off the chart. Every day was a big struggle with daily long symptoms, my best friend was my bed.
Treatment: herbs, acupuncture, energy balancing and vestibular rehabilitation therapy. Vrt did help my sense of overall balance improve,did this for 12 months in total. I cut out all caffeine immediately.
Work/life: I was on medical leave for 6 months, unable to drive for 3 months, then I returned to work on a phased return with medical support. Reached my max with 18 hours per week. Can honestly say this was a super stressful period for me, I spent hours off work in bed trying to recover only to go back to work at start of week and everything flared up again, my anxiety was very high. June 2017, I resigned from work and on the night I did it, had the best night’s sleep ever.
By mid 2017, I felt some days were not as severe as mid 2016 at onset and some balance was returning. At this point I knew I couldn’t fix this myself and got referred to a neuro with knowledge of migrane. Each day was bad and had no symptom free day, every day I struggled.
Mid 2017 to mid 2018:
Pace of life decreases and I’m now a stay at home mum. Still living with very bad daily sympthons, pain particularly dominent around eye, temple and headaches, but ear pain had improved a lot itself. Nausea has settled too. Attended neuro in Sept and after thorough discussion, he diagnosed chronic migrane primarily triggered by hormones and most likely stress too. No meds taken as I was sure I was improving and felt so anxious about meds, he asked me to honestly capture truthfully daily how I was doing. I was lying to myself to avoid meds. My memory, ability to concentrate awful and super tired.
Other treatment: hrt… This was an experiment I had to do before any move to meds. I took estrogen gel and progesterone for 6 months, at the start it started to give relief on pain so a few days of no pain here and there but sadly the build up of estrogen exasperated my dizziness so any improvements I had made were getting overtaken.
Early April 17 to April 18:
At my return visit to the neuro, I walked in and said I need meds. I’d had a very hard 6 months since Sept and knew this was no life for me like this, I’m young with small children and need some quality of life. Neuros goal is to get me 50% improvement in pain and non pain symptoms, so crystal clear… Normal days. Told me to walk every day and stop all acute meds, previously I was taking painkillers everyday .
He looked at my mri and said he seen black spots which he said were very common on migrane brains.
9mg x 2 weeks: april
I started on 9mg of venlafaxine immediate release, felt very tired and started it at night time… Bad idea… Insomnia kicked in so switched to early am. No big noticeable improvement on symptoms.
18mg x 3 weeks: may
Thought I was doing well going up quickly, until I got a 9 day headache, I had to talk to migrane nurse who advised to slow down so I did. Managed to get 4 days pain free but no crystal clear days.
27mg x 8 weeks :June & july
Starting to see good improvement in pain, had 10 days pain free in both months but only 1 crystal clear day.
37.5mg to 56mg :August & September
Pain free days increase and some vest free days (days I felt steady).
75mg to 112mg: October, November & December:
I switched to extended release because I noticed on the immediate release, I’d get a huge burst of it, feel very tired, tummy unsettled and then the dreaded pain would return around 4 or 5pm. These 3 months are where I started to see the biggest return with some better crystal clear days eg in November it was 9 days and I could feel steadier in myself, less head spins and lightheaded etc… Even pain days seemed less severe.
However I forgot earlier learnings about titration and made a bags of it by racing up to 112mg…the headache was 8 days long and I could barely function so I reduced again… My side effects continue to be the vivid dreams and night sweats.
112mg to… January to now…
In march, after 8 weeks on 112mg I had 12 days crystal clear!! I returned to see my neuro in February and he’s confident that this med can give me more so I am moving up to 150mg. I feel steadier overall and get occasional spins now, my light sensitivities have really improved, still some days when fleurosent lights can be a problem but not as much. My nerve pain is much less and I’m delighted with this, pain is exhausting.
My neuro and I know that hormones are my biggest challenge and I see this in my migrane calendar, my best days are between ovulation and period and then tbh all hell breaks loose on those days so each month I have to reset myself.
I’ve had another mri to compare against the one done 3 years ago. I review this with neuro in Aug so I’ll let you know what changes if any ie black spots.
I will start tirating up slowly by 12.5mg until I get to 150mg,i think this may take me until July. I feel every mg I go up so must go slow. I am back to neuro in August.
His plan is to see what 150mg will do and he said if necessary go to 225mg. Im not in agreement with this, I have read it can affect mood over the 150mg and I’m not willing to mess with my head in this way. He’s hopeful it will settle as I go thru meno but at 46,thats still a way off. Im still not ready for work but I hope to try and do something in the future and need to think long and hard about my new limits mean for my career.
Learnings so far…
- don’t wait as long as I did to see a neuro
- manage any anxiety about meds as best you can and make your own decision, I listened to too many people who said not too…
*listen to your body when tirating up and trust what it’s telling you, low and slow is the best way… Don’t ignore the signs… A 9 day headache is not good…
*find the balance when googling meds and side effects plus withdrawals… It can terrify you… I can’t imagine where I’d be now without meds so find the courage to try something if you can
*I found that acceptance of this condition far easier and more positive than fighting or chasing the answer to ‘when will this stop’
*I’ve accepted that there are far greater burdens I could be carrying and I’ve decided to travel in hope even as I go up to a higher dose
*I’m optimistically embracing this as a silver lining, my life has had to become calmer, less stressful and I’m fortunate to be at home with my young children
*surround yourself with support especially on the dark and hard days and ask for help, this forum has been a source of comfort to me for the last year and will be in my next phase
So that’s it, if you’ve read all of this thank you!!! I’ll update again in 3 months when I’ve attempted the 150mg.