The Migraine Associated Vertigo Community
Read our welcome post, user support wiki & visit our member recommended products page

My Diary: effexor and functional medicine

My Journey started in December 2016, 6 weeks after giving birth to my boy. One day some weird sensation happened in my head, I thought “I am tired” but after a few weeks of weird symptoms I went to see the local GP. Mainly my symptoms were a fraction of seconds of vertigo (I never had the room spinning), unsteadiness, brain zaps and problems with my vision, like everything was unreal around me, phonofobia and photofobia and massive brain fog.
First GP sent me home with a nose spray. I then went to see privately 3 ENT and every one had his own diagnosis, including: go for a holiday.
Finally in May 2017 I went to see dr S. A few test and VOILA… vestibular migraine. No damage to the vestibular system (1 good news).
Anyway, my first drug was gabapentin … 1 pill was enough to trow the packet in the rubbish. The next one was amitriptyline… was ok but wayyyy to tired to live on it. We switched to nortriptyline and started 10 mg and went up to 60 mg. I had minor improvements, so Dr S. decided to add effexor. On the 2nd day I was already better. I reached 37.5 in 3 weeks and was really feeling great. The 24/7 was gone, I had symptoms and I had bad days but I could start having my life back. Super markets were a big no-no for me at the time.
In december 2017 I started VRT with Dr. Pavlou in London, she is great and with her and effexor I reached 90%.
I decided to see a Funtional Dr., expensive but she was really worth it. I finally got a blood test done after 1 year and half and I had loads of deficiencies. I was taking 18 supplements a day. This was March 2018.

If I could go back I would start my journey with the functional doctor and try to avoid being on 2 drugs.

Anyway, by May I am shopping in big groceries stores, listening to music, and doing normal things.
Should I be writing in successful stories? I don’t feel I am there yet. I am still on 50 mg nort and 37.5 effexor and I still get symptoms, not many… but I do:
I sometime have a weird feeling on the left side of the head, especially the eye. On a bad day I have it on both eyes.
Phonofobia is still a thing for me, at Xmas I suffered a bit.

Anyway, despite my lovely functional dr said no changes for now, yesterday I took 45 mg nort. So will see… hoping not to crash any time soon but with this illness who knows. If I get symptoms maybe I increase again (?)
Anyway I wanted to share my story here.

7 Likes

Love the prescribed holiday? Coukd you have obtained prescription for it on NHS maybe. I very much doubt it, don’t you.

So, you were spinning, not the room? The illusion of self movement?

Photophobia I understand, but ‘Phonofobia’? Could be me being bit dense, sorry, and do you think the Effexor has sorted the photophobia? I know it’s a good reputation for Visual Vertigo.

Glad things are going better for you. Helen

Joanna, your story is similar, the weird head sensation and feeling extremely tired one day 4 months after my baby was born… and then yes, all the rest, for me has been the rocking the worst. Btw, neuro gave me gabapentin to sleep, because I wasn’t sleeping great, one pill and I stopped sleeping for 5 days in a row, ended in the hospital (before effexor). So no gabapentin for me. Had to take seroquel for 3 weeks to bring back sleep to somewhat normal patterns.
I have been stricter with my diet but the last couple of months I have been a little less careful with sweets and carbs, and I gained a lot of weight (8-10 pounds!). I am on 150mg of effexor, and I would say I am 80-90%, but I restarted the diet this week to ditch the sugar, so in terms of balance everything, yes, we need a delicate balance of proteins, vitamins, etc. But maybe you can increase effexor a tiny bit?
@Onandon03 phonofobia is sound intolerance. I have phonofobia to my toddler yelling all day, haha. He has discovered his voice and oh gosh!
Glad you are doing better Joanna, keep going. It is hard to tag your self in the success stories, but I think if you are finally living life somewhat normal that is success. Keep going!

How good to read about your recovery.
Your story sounds similar to mine, in that I also had MAV (or vestibular neuritis, maybe) the first time a few weeks post-partum.
May I ask how bad your vertigo / unsteadiness was? That’s really my major symptom (rocking sensation( and I just can’t seem to shift it. How unsteady would you say you’re now?
Wish you a good further recovery.

1 Like

We need a club of postpartum MAV mamas! :slight_smile: I’ll try to find the old theme and maybe we can update there.

2 Likes

Maybe I spelt it wrong, my mother tongue is italian… When too much noise from different sources is a trigger.
Regarding the spins I’m not sure, it was the room moving but was just fractions of seconds, a little bit like to gif images in a loop, hard to explain.

On the NHS I got the nose spray, no holiday :slight_smile: LOL

Dr. S wanted me to go to 75mg but I am trying first to see if I can get results with my functional doctor…
Such a shame for us, so happy to have a baby and so unhappy to have this crap

most of the day I am normal… I just get this strange eye thing, no more unsteadiness :slight_smile:

Well, your English is excellent. I would never have guessed it’s a second language to you. I think I was half thinking it could be a typing error for ‘photophobia’ because it occurred directly following a reference to your eyes. Sorry. My mistake. You had the correct word.

The spins are true vertigo from your description. Often it only lasts seconds but sometimes but can last days. Pretty grim either way.

Painful? Feel they aren’t working together? Helen

no, feels more like a pressure thing, and makes my head feel fuzzy

Yeah, I got those symptoms a lot. Fuzzy head, scratchy heady, electrical / pulsating head, etc.

Ah, the ubiquitous rear head pressure. I’m sure it’s constricted bloodvessels in the cerebellum, or inflammation. Always feels like too much material packed in too small an an area. I’ve had it months without end. Helen

Do you think it’s still VM?

Do you still have it? If not with what did it get better?

It’s going. I now get crystal clear head days, sometimes three in a row. Today’s clear. I take Propranolol but I think the JohnHopkins Diet, and more importantly caffeine restriction did much to help this. Propranolol’s done alot of other good things. Helen

1 Like

Yes, at this point I’ve ruled out so many other conditions. When I start to think its not VM, I start to get a little health anxiety. :grinning:

1 Like

It’s never been in the rear for me actually. It’s just a global head pressure, like my entire brain will explode, although sometimes it can be local to the bridge of the nose or between the eyes.

Erik
Like you my nose seems to take the brunt of the pressure…how mine hasnt burst i’ll never know…its throbs to the point of explosion!! Venflaxine helps a bit though.

1 Like

Your post has filled me with some hope and knowledge, thankyou. Ive tried Ami no sustained results. I’m on 70mg nort now and no results so hoping Effexor might knock the wind out this MAV. Very intrigued about this functional doctor, new to me I’m going to look one up.

1 Like

When started the effexor I reduced the nort a little because I was afraid of raised heart, all went well. Hoping you have some luck too with the med

1 Like