Tried occipital nerve block - need advice

Hi Helen,

I am sending a message to my doctor today (hopefully he will look at it early this week) regarding my questions about switching meds around and why he does not want to try a cgrp injection (preventative) vs oral preventatives. I can certainly appreciate the cost issue, however if a cgrp abortive (Nurtec) has given me some relief this week with unsteadiness , why not try the preventative?

It seems like there are a few posters on this forum that have had success with the new injectables. Looks like @getbetter has had some relief with one of them?

Hi Elizabeth,

(posting from a new account, because the “lost password” link isn’t sending me my password reset link @turnitaround?)

I’m on very similar meds, and have had the occipital nerve block recently, so can share my experience.

I’m on:

  • 2x Botox rounds
  • 1 occipital nerve block (about 3 weeks ago)
  • Nurtec as an abortive
  • 180mg daily Verapamil
  • 75 mg of Venlafaxine (Effexor)
  • Daily Cefaly device

I’ve also trialled Emgality (one month), Amitriptyline, Lexapro, Cymbalta, Propranalol.

I was chronic since Nov 2019, and feel like I’ve become more episodic in the past few months. I get maybe one flare up/week, but otherwise feel mostly normal, occasionally slightly wobbly, and occasional brain fog/tiredness. I credit Verapamil and Venlafaxine the most for reducing the disequilibrium, and the Botox/Occipital nerve block for reducing/removing the pain/pressure. It took me months to figure out the meds.

Emgality helped me for that month, but gave me pretty bad joint pain, so I went off it. Nurtec (only had maybe 5 tabs) helps with the flare ups, and gives me zero side effects. Amitriptyline gave me awful tinnitus, as did Lexapro and Cymbalta. Venlafaxine I tolerated the best.

I was in the same anxious state you were in at the start of all this. After a few months trialing meds, walking a lot, pushing myself (but not too hard) and seeing small but incremental improvements, my anxiety dropped off and more improvement came.

Unfortunately, this is a marathon, not a sprint. I think even if you get a CGRP and get on Verapamil, it’ll take a little while to kick in and help you along. Be patient, and kind to yourself.

Good luck! Let me know if you have any questions about the meds. Certainly I’m on Verapamil and taking Nurtec and haven’t had issues, but listen to your doctor. :slight_smile:

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Hi Sonny,

Thanks for all of your helpful information. Did you start out on a high dose of verapamil or have to taper up? Just wondering how that went for you in terms of blood pressure changes, etc. my neuro hasn’t said anything about Effexor, not sure If that is a med he typically uses.

I certainly respect that this is marathon and not a sprint. Like so many others I think i had to get through the initial shock and uncertainty about wha was going on and then try to find a doc who really listens and move forward with a plan that I am comfortable with.

Due to uncertainty on what meds to take, I have just suffered through a few days of horrible menstrual migraines (with vestibular symptoms - brain fog, etc) I am so tired today and feel lightheaded and weak when I stand up for very long to do much. In the past I have never had problems like these - maybe a little fatigue but I have the feeling like I’m hungover right now. Just want to feel normal someday again :pray:

I started with 120mg of Verapamil, saw some initial relief after about 10 days – I went from having all head movements feeling way off, to most head movements feeling normal. After about a month, I moved to 180mg, and got even more relief. I tried 240mg, but the constipation became too bad. Apart from some constipation at 180mg, I have no side effects, and no side effects starting up either. Heart rate stayed the same, as did blood pressure (I was already low, 110/65 usually).

Propranolol I could not tolerate – heart rate dropped super low, as did blood pressure.

Effexor, I had to taper up suuuper slow. I cracked open the capsule, and started with 5 out of 100 beads, and added 3 per day, pausing the increase whenever I felt side-effects until they went away. I had some insomnia (for about a week) and increased sweating (for about a month). I paused for a long while at 37.5mg (full capsule), felt a lot of benefit there after 4-5 weeks, then continued in the same way up to 75mg. Getting to 75mg was far easier than tapering up to 37.5. I’m considering going to 112.5mg.

I was more excited about Effexor than the other SSRI/SNRI’s, because it was Dr. Hain’s preferred choice (search Dr. Hain venlafaxine).

I was really anxious about the horror stories about all these meds on the internet. Instead of horror, they’ve actually brought me great relief, particularly because I can’t really figure out what my triggers are. I’m very glad I pushed through, and super thankful for the support of this site in doing so.

You’ll feel normal again. I’ve accepted that I may never get to 100%, but given I can get to 90-95% most days, I’m pretty happy with that as a new normal. My Uncle had a stroke decades ago, and his new normal is about 30% of what he once was. While this disease feels pretty shit, you certainly learn a lot about life, and yourself, with a fairly minimal cost relative to those with far worse disease outcomes like my Uncle.

Stay safe!

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Hi Sonny,

Wow thanks again for writing that all up as to how you tapered your meds. I know everyone’s biochemistry is different but it’s good to see how the process works and great to hear that you had such success (of course took some time).

I’m still waiting to hear back from my neuro regarding the new med plan with verapamil and naratriptan. I think he wants to start me on a pretty low dose of verapamil (40 mg at night) and see how I do. The waiting is sometimes the hardest part - to feel like you are working toward something.

One other question to you and anyone else that maybe reading this thread. Have you experienced any major prodome symptoms after having a flare up of migraine or atypical migraine for a few days? I just finished my period and had horrible headaches the last few days. Today I woke up without a headache but I am extremely fatigued and feel like I can’t really stand or walk around for me than 10 min or so. I haven’t experienced anything like this before (during this whole 2 month period where I’ve been dizzy, had brain fog, etc). It’s almost like this round of headaches and vestibular symptoms hit me harder than when this initially happened back in November. I’m really freaked out by the severe fatigue and inability to stand for very long.

Dr. Hain says 1mg per pound for Verapamil. It’ll be interesting to see how you do on 40mg.

One other question to you and anyone else that maybe reading this thread. Have you experienced any major prodome symptoms after having a flare up of migraine or atypical migraine for a few days?

On a day where I’m more “normal”, I still feel a little bit of symptoms, either slight disequilibrium, slight fatigue/discomfort, slight vision “straining”, or just feeling a tiny bit off. Sometimes I just have one of those symptoms, sometimes I have multiple, depends on the day. But they’re generally “slight” or low on a good day, almost not noticeable.

On a flare up, I’ll have one or more (usually more) of those symptoms magnify by like 2-10x. i.e. it goes from a 1 out of 10, to like a 5 or a 7 out of 10. And then I’ll take a Nurtec or some NSAID’s like Naproxen and then take a nap, and it goes down. Over the next couple of days, it goes from a peak of let’s say 7/10 to a 5/10, then a 3/10, then by day three or so, I’m 1/10 again. That’s how it feels for me.

My episodes are the peaks, and the low level 1/10 stuff is just my brain still being hyperexcitable. I think what might happen is when I finally have longer time frames between my flare ups (I get about one per week right now), those 1/10 days will go to 0/10 days. Would love to hear others thoughts on this, as that’s what I’m shooting for right now :slight_smile:

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Sonny,

Thank you again for all of the helpful and detailed information. One thing I forgot to ask - did you have a history of migraines previously? I’m still totally confused as to whether or not this whole episode was brought on by change in hormones and now I have vestibular migraines (this seems to be what my neuro thinks)?

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No history of migraines, no. I had the occasional headache, and the rare bad one, but nothing like migrainers usually describe. No family history either, although DNA testing showed migraine related genes. I also have high frequency hearing loss (genetic).

Then in middle of 2019 everything changed. I had aura (room turned 90 degrees slowly, lost vision in my right eye, lost the ability to speak), but no pain. 2 weeks later, I had shimmering kaleidoscope aura, slight pain. Then by November 2019, I was out hiking, and suddenly got dizzy out of nowhere. Was chronic for 7-8 months while I was figuring out meds.

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I’ll add that I also spent a lot of time trying to figure out the cause and effect, along with the underlying root cause of my new diagnosis. I learnt a bunch of stuff about neurology, stress, hormones, gut bacteria, neck and cervical stuff, vestibular tissue, you name it. In the end, it was a journey with no real end-point, and no real influence over the plan that me and my neuro came up with. I think I was just desperate to find the “fix” and naively thought I was smart enough to figure it out. :slight_smile:

It seems the science isn’t quite there on what causes/triggers this stuff. And if you read enough stories on here, you’ll realize that where it starts looks very different for everyone. I felt guilt at first: maybe I did this to myself, but I came to accept the human body is complex an fallible, and occasionally you get unlucky with it.

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Sonny,

I identify with a lot of what you wrote about trying to find the cause and even blaming oneself for maybe pushing myself too hard (with work, school, etc) and somehow I caused this health issue.

It’s interesting to hear how some people on this forum never has migraines and then these terrible symptoms showed up one day. Whether you had chronic migraines or not, one thing is for sure that this is such a difficult situation to deal with as we all have different triggers and respond to medications so differently.

I think one of the most difficult parts for me right now is trying to figure out if I have to put school on hold and perhaps even change career trajectories. I am a critical care nurse in a family nurse practitioner masters program (supposed to finish next year), and right now I’m pretty sure I will have to take a leave of absence.

The difficulty I am having with all that is if I leave my job and school, what type of structure will I have and will this push me into a whole other level of anxiety and feeling lost. The daily headaches, brain fog, and unsteadiness, and general unpredictable nature of all of this is very debilitating. I just can’t figure out how to make career/ school work and try to get better at the same time. I want to focus on healing but so afraid to lose some aspects of my current my identity as a healthcare worker and a student who really enjoys my program. It’s just very upsetting and overwhelming right now. :heart:

I think one of the most difficult parts for me right now is trying to figure out if I have to put school on hold and perhaps even change career trajectories. I am a critical care nurse in a family nurse practitioner masters program (supposed to finish next year), and right now I’m pretty sure I will have to take a leave of absence.

My humble suggestion is that you delay any decision making until you’ve seen how you respond to the meds. My neuro has said that ~80% of people respond to the meds and go back to 90-100% of prior life function, and 20% take a little longer or have further struggles. The odds are in your favour, even though it doesn’t feel like it.

I was also in a similar position at the start – I spend my life and career in front of a computer screen, and for the first few months I could barely look at one. Thought all the same things you did: should I change career, what is my identity without this, what will my future look like etc. I’m unfortunately in the 20% of responders to meds, and here’s what I’ve learnt, even with the odds not quite in my favour:

  • The lessons I’ve learned dealing with this shit in the past 13 months have been the most valuable of my life.
  • You find out what you really care about, and who really cares about you.
  • You’re amazingly adaptable, far more than you think.
  • If things go well and the meds work, you’ll find your way back to your life and career soon enough.

I’ve spoken to a few people who’ve recovered 100%, who were lucky enough to have things go back to normal like a light switch and within weeks. I’ve also spoken to others where it took some time. Super hard to predict, but there’s hope either way.

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One more thought I had: if you can afford it, buy a Cefaly device. You don’t need a prescription anymore, and you get a 60 day trial to see if it helps you or not. Dr. Beh (wrote Victory over Vestibular migraine book, which I liked), also recommends Cefaly for VM. I love mine, use it every night.

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Hi Liz, I too suffer mentrual migraines. I was blessed with VM in October and now have vestibular ones. Always had the pounding headache type that was easily treated with a triptan before this at period time.

The last one came on suddenly and I felt extremely fatigued, nauseous and majorly dizzy about 3 days into it. To bed I went. The whole week after that, I had a pretty bad headache. So not much before though. Similar to you I think.

My periods are irregular now for some reason. I was due last week and keeping a careful eye on myself.

I stress about this too. I have started back to work this week. I love working but the stress is high level. I’m also starting a uni course soon. I think my approach to it is not to be a perfectionist and maintain low physiological stress. Ha! Trying. But I’m super dizzy/floaty/imbalanced some days (like today). Could be that period on its way - I hope so to help explain it.

I hope you find the right way forward. It’s so challenging with an uncertain future. I’m always on edge about this returning to my worst! Questions like ‘what then?’ How will I cope again?’. I think I would lose faith in myself a bit. But… for now, trying to do most things slower (including a being mum).

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Hi Sonny,

Thank you for your advice on making too many decisions based on the little interim information that I have. It’s just so hard to determine what the right next steps are because I can feel 100% for most of the day and then at night I seem to get the same pressure headache - esp around my nose and sides of head and feel totally exhausted/ foggy when trying to do anything cognitively challenging or even having a conversation over FaceTime. This is all truly so strange to me and praying I hear back from my neurologist tomorrow to get some plan in place. :pray:

I really want to push for one of the cgrp preventatives as I have responded so well to Nurtec (cgrp abortive) with my chronic migraines. Neuro wants me to start verapamil and I just want to go to cardiologist first on Friday to make sure this is an appropriate option for me. I really haven’t had any major events in the past - just a rapid heart rate at times with caffeine, exercise, etc - they think I have some type of svt but never able to catch it on an ekg or holter monitor. I still think it makes sense to get the ok from cards before taking any meds that can have significant cards implications though.

I will definitely take a look at the Cefaly device. It looks like some others on this forum have had good experiences with it. Do you find yourself using that every day or only when your symptoms are ramping up?

Hi Belinda,

Thank you for your kind words. It is very helpful to hear from others who are experiencing the same types of problems - particularly since you have suffered with migraines in the past as well. VM is so derailing no matter what - but to go from understanding how to deal with a chronic debilitating condition and then have it morph into something even more complex and mysterious has been really tough.

My heart goes out to you for dealing with all of this and caring for a little one as well. Did you say you were a teacher too? I could have had that wrong. I’d like to hear how returning to work is going for you and hope your coworkers are supportive and kind while you are adjusting back to that environment. Good luck with your uni course too - what will you be taking?

Sending you support and kind thoughts from across the pond :pray:

I will definitely take a look at the Cefaly device. It looks like some others on this forum have had good experiences with it. Do you find yourself using that every day or only when your symptoms are ramping up?

I use it every day on preventative mode. It has an acute mode also.

I really want to push for one of the cgrp preventatives as I have responded so well to Nurtec (cgrp abortive) with my chronic migraines.

Yeah this makes sense to me. I have two neurologists (lucky me!) and both have said that they’ve had the best success with Emgality for VM.

It’s just so hard to determine what the right next steps are because I can feel 100% for most of the day and then at night I seem to get the same pressure headache - esp around my nose and sides of head and feel totally exhausted/ foggy when trying to do anything cognitively challenging or even having a conversation over FaceTime.

Yep, sounds about right. You’re brain is probably hypersensitive right now, and you’re accumulating triggers during the day and pushing it over it’s already sensitive threshold. I occasionally got this myself (head pressure in the afternoon), but the Botox helped a lot with that. I also tried to go swimming when this happened, and it usually cleared right up too. Try experimenting maybe?

Oooh you’re from NZ? Yes, I’m a teacher. It’s certainly not a job you can hide away in the corner of an office. It’s demanding, busy, stressful and need to be on your game both physically and mentally. Very much like a nurse I would think. Are you working still? Sorry you’ve probably mentioned before.

I will be studying a grad cert in teaching religious education. Bit of bible study - maybe that will help me!

I would love to hear if you try out an injectable. I’m interested in these too. Although pizo has helped a lot, I’m not 100% and wonder whether adding in something else might be worth it. Or give it more time? Time I hear is what the brain needs.

Have you come to a trigger for VM starting? I’m still convinced it was a couple of BPPV attacks I had. Makes the most sense to me.

A bit of hope for you. Another Dr Texeido convert it seems.

I have improved. A lot.

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Hi Helen,

I read the post you linked and want to say thank you very much. I’m still having daily headaches and have some intermittent unsteadiness. I am looking forward to my appointment with Dr. Texeido, just want some relief! :heart::pray:

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Sounds like he’s a guy worth consulting. As you are still relatively mildly affected and you have had a prompt chance of treatment, even looking to March is prompt by MAV standards, as a layperson I would think you have a pretty good chance of gaining control within a similar timescale as @migrainemike. Can’t see why not. Believing that that can happen and trusting in your specialist will help immensely.

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