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Nin's journey

Hi all,

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.

**background **

*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 :wink:.

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 :roll_eyes:, 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 :roll_eyes:.
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.

What’s next:
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.

Take care
Nin x

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Elaine i applaude you. You havnt put a foot wrong and doing everything you could possibly have done to get better. I enjoyed reading your post immensely.
When you said you developed the worst headache at work that changed your life…that was me!! 17th Nov 2014…life was great went for lunch break then from nowhere the whole right hand side of my head and face was in absolute agony. My work mates thought i was having a brain bleed but when i got to the doctors he said it was either a cluster headache or a horrendous severe migraine and put me on oxygen and sumatriptan up my nose via a spray. I too have never been the same again from that day.
Thanks for your update
Jo💖

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Nin, Congratulations on your journey to wellness! It is a long, difficult road that we travel no doubt.
Your quote above resonated with me. My whole life I have been the rebel when it comes to medications. I just refused to allow myself the thought of taking prescriptions. Finally, after 11 months of living the MAV~hell… my resolve broke. I am so INCREDIBLY thankful that it did and only regret not allowing myself relief sooner. Stay well :sparkling_heart:

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Best Effexor survivor story with good attention to detail. Thanks for sharing Elaine . I have titrated from 8mg to 31mg so far over one year and notice the benefits similar to what you have mentioned. My weight gain is a problem as i am also on 10mg Amitriptyline. Did you notice any weight gain with Effexor ? I am planning on dropping Ami altogether and just bumping up Effexor.

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Thanks a mill for the kind words and ongoing encouragement as always, hope your having a good day :heart: x

Thanks so much Renee, I share the same regret, but grateful nonetheless I found the nerve to take on meds. Hope you have a good day :heart: x

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Thanks for reading thru it all, thankfully so far no weight gain but will keep an eye on it as I tirate up. In terms of food, I do notice an extra craving for sugar, more so than pre venlafaxine. I still have limits on walking, on a good day ill do about 2 or 3k walking with stick so that’s helping with weight too, I hope :crossed_fingers:. I really think venlafaxine very good and might be worth switching to it and giving it a good run at it. Let us know how it goes for you :blush:

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Thank you nin for writing up your story. Your story captures the immense pain, fear and suffering of your MAV journey, but also your incredible courage, resilience and perseverance. Wishing you a good further recovery on the higher dose :slight_smile:

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Venlafaxine is supposedly ‘weight neutral’ unlike Ami, Pizotifen, Propranolol, and many others I suspect. Apart from that I think what Grannie used to say is true. Unhappy (anxious) people fret off weight anyway so getting better alters more than one part of the equation and with your balance having limits in terms of exercise things are rather stacked against avoiding weight gain. All we can do is to try. Helen

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July 2019 update:

I’ve reached the 6 week marker at 150mg of venlafaxine and here’s my experience to date…

From 112mg up to 125mg…tirating up was good and I stayed at that dose for 3 weeks.

From 125mg up to 137.5m…tirsting up threw up a few little electrical zaps at the top of my head but settled after a few days. Occasional rather than constant. On this dose I travelled to the UK and had a great trip, started to feel much steadier than on other doses.

From 137.5 to 150mg, i timed it in error with period so had about 5 days of bad headaches, these are normal for me at time of month. Within about 5 days or so, started to feel super steady almost the steadies in 3 years.

150mg…after the above I experienced 6 Crystal clear days of zero symptoms, the best ever yet.

Since the start of July however I’ve been battered by headaches, pain of a stabbing nature in my head at night and all headaches were whoppers waking me early. During all of this my steadiness was super good.

Nest steps… After neuro visit today are…
-continue to stay on 150mg venlafaxine
-add in 10mg propranolol per day for month, then up to 20mg
-return to neuro mid November

Learnings…
-venlafaxine very good for pain up to 150mg
-on 150mg its a different drug for me
-on this dose, it affects serotonin and noradrenaline which can disturb blood vessels in an excitory manner.
-on 150mg, my vestibular issues are controlled
-adding propranolol will act as a constrictor for my blood vessels-
-neuro not convinced meds are culprit for this bad spell, he said its more breakthru and to stick with 150mg for now as its helping vestibular issues.
-I told neuro that coffee was easing the headaches and pressure after the 150mg thus proving for me anyway, on 150mg I need additional support.
-overall, I’m moving forward as he reminded me today, there will be breakthru… Im happy with this plan, tbh I had this written out as my goal.

  • whilst I wanted extended release, he said this starts at 80mg and was way too much to start on.

Fingers crossed this is a good combo for me. I’ll update in November.

Nin x

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Your doing fantastic. I wish I could follow things exactly like you have. Im planning on trying a new meds but just u n sure of which one right now

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I got 26 extra pounds in a year on venlafaxine. We make choices. Being able to walk a straight line without throwing up was worth it.

Good luck Elaine! :heart::heart:

Thanks veena, I spent the week fretting about how to make a decision on this and meds so I understand your dilemma. I had a plan in my head but thankfully my neuro is open minded and available for follow up. One thing I did to form my plan was talk to my pharmacist, I find pharmacists know much more about meds than neurons in terms of interactions side effects etc… Good luck, I hope you can form a plan for your meds, reach out if you’ve any more questions x

Thanks Emily, hope you are keeping well, I read your updates on your musings thread. Your one of my super star women for sure :two_hearts: x

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Thanks, Elaine.

I’m doing ok. I’m scrambling to give all my work to my sub consultants or finish it before I go on a navel gazing, stress reducing month long break. Very stressful, but with an end goal in sight. For unmedicated, I’m cruising at 85% or so. That ain’t too shabby. :slight_smile:

Take good care of you my friend.

Em

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Hi Flutters
I can so relate to the weight gain on Ven…am at 137.5mg and am the heaviest I have ever been despite cutting back on food, it seems like I only have to be near the refrigerator and another kilo clocks up! But the reduction in constant dizziness is worth it.
Mav

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Absolutely thrilled for you Elaine that you have a new treatment plan, we will all be dying to hear how you get on as I think you will be the first on here to try a Ven/Prop cocktail and if it gives you better symptom control I will definitely want to add Prop in with my Ven too - Ven is working well for my dizziness but it’s not touching my constant head pressure.
Best of luck
Karen

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It’ll be interesting to see how you get in with the propranolol. Some find it controls headaches at very low doses. I found it controlled my acute 8 day long vertigo attacks 100% for three years from start up. It also eventually stopped the 24/7 dizziness, greatly reduced photophobia and visual vertigo but it’s done little for my imbalance and I think cutting caffeine did more for the rear head pressure. For me it’s proved a worker albeit a slow one. Maybe it’ll work differently on top of Venlafaxine… Dr Hain rates it in combo. I feel no real need to wish you luck with it because I found it kind and an easy drug to take with no sting in the tail on increase. I never even noticed. You should be fine. Helen

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