Looking for encouragement—chronic vestibular migraine

Hello all,
I’ve just been diagnosed with chronic vestibular migraine after 2 1/2 years of near-daily symptoms that have been much worse in the last few months (following being hit by a car, another story). Prior to that I had only occasional, though extremely severe, migraines (still get those too). I am off work and feel sick every day with dizziness/vertigo and headache. I have to force myself out to the gym every day but spend most of the rest of the day housebound; just too headsick to do much else. I was on 10mg nortriptyline daily (from my GP) for two months until a week ago, when the neurologists increased the dose to 25mg, going up to 50mg next week. Neurologist also suspected medication-overuse headache so took me off all OTC analgesics, with naproxen 500mg 2x/day for two weeks to wean my body off the painkillers, I guess. I am so scared that I will feel this way forever—I never expected to be a person with a chronic illness. One year ago I had mild daily symptoms but was extremely physically active all day long, professionally accomplished, outgoing, healthy, loved being out in the world. Now I am housebound, can’t work, am way overweight, barely socialize. Has anyone had substantial success with nortriptyline for chronic migraine? I just want my life back but fear it is gone forever. I have never been able to identify any particular triggers but as I’m just beginning to educate myself on the condition I see that almost everything I eat and drink is a potential trigger, which is overwhelming, and I barely know where to start in identifying which might be pertinent. I know I have to give the medication a chance to work—my symptoms have actually been worse since I started nortriptyline. Will the higher dose make a difference? How long before I can tell if it is helping or not? Looking for any encouragement or insight about this chronic condition.

Hi, and welcome.

If you pick up on @DDAM1994’s posts under Success Stories on the introductory Welcome and Wiki Section you’ll find he had great success with Noritriptyline and now he’s off to train to be a neurologist. You’ll also find quite alot of info about VM too together with links to other relevant websites. All worth a read. You will find VM does generally take a long time to go away and often you have to trial several drugs before you find the one that works for you however the one you’ve been started on is one of the long established and trusted ones so you were given a good place to start. Consensus is that you may not see much improvement for 6-8 weeks so provided any side effects are manageable it pays to stick with it. If you weren’t responding after 4 months it’s usual to try another drug but some doctors change sooner. To be effective you need to reach a dose, that controls yr symptoms and then to stay there for maybe mimimum 6 months often a year before being reassessed. Individuals vary greatly. Some might be good on 10mg, others might need 70mg or more. You may well feel better once you are on the higher dose but these drugs are usually introduced low and slow, which makes for a lengthy process compared to some other conditions. Seems daunting, it is but with treatment, it shouldn’t be for ever.

To identify triggers try keeping a diary recording food and maybe environmental chanhes/reactions. On the Welcome section have a good read. You’ll find a special Migraine elimination diet, to help sort food triggers.

You mention going daily to the gym. If you can check this out with your consultant. Some feel too much exercise overchallenges VM. You need to keep fit but stay safe. Try to walk outside for a short time every day but check with yr medics whether you might be overdoing the exercise by going to the gym. It may well be OK if you have always taken alot of such exercise. You may well be habituated to it. Good luck with your journey.

Hi, and welcome here.
I am on Effexor 75 mg. My main symptom is 24/7 rocking/dizziness and intermittent head/ ear/ neck pressure and pain. I have been on it for 11 weeks and some mornings I feel almost normal, but around mid day all starts moving… But I am responding to tell you that 11 weeks ago I was completely anxious and depressed about this, and I wasn’t coping with this situation at all, thinking all my life as I knew it was gone. I am not sure if/how effexor is doing with MAV, but definitively is helping me to cope with it better.

Things that have improved in the last 11 weeks:

  1. way less anxiety/depression feelings
  2. more energy
  3. feeling a little more steady/less rocky when sitting still
  4. I am sleeping better
  5. I am cooking again and doing the migraine diet (migraine relief plan/ heal your headache/6 cs)
  6. less headaches, I have not used any painkiller for two weeks, and before that I have only used a couple of times the triptan and 3 or 4 times ibuprofen. I have decided to ride the multiple pains without pain medications to let Effexor do its work, and to avoid rebound headaches. I use ice, lay down, cold shower, or go for a walk.
  7. I am going out more and having people over and enjoying more my baby and overall all in my life, despite rocking
  8. I am working almost full time and going to meetings where I get dizzy but not overwhelmingly dizzy
  9. I am watching a tv series now :slight_smile:

I am still dealing with some vision problems and the rocking during the day at different intensities. I started vision therapy and going back and forth on using my prism glasses for Vertical Heterophoria.

Anyway, all this to say that it slowly seems to get better, again, I think my mood and because of that, I push myself everyday to do all my activities.

Other things I am doing is taking magnesium (400 mg) and I walk everyday for about an hour. I am doing some vestibular exercises but not a lot.

I am not sure how long you have been taking your medication, but as I have read here, you need a few months and go up to max tolerated dose to see if this is the one for you. Something that helped me is reading that you get better slowly, so look for the little progress. When I think I am not getting better, I think about the day I started Effexor and realize how much progress I have made.

Good luck!



I’m sorry you have to go through this as well. I know exactly how it feels to get a completely unexpected and chronic illness, all of us here do. Before my episodes began I could run a 5 minute mile! Now I only do some gentle yoga and a bit of tai chi, which I am content and happy about actually. I am about 1.5 years in and I am much better, specifically the psychological aspects. This condition really forces you to change your life in all aspects. I do believe it has changed me for the better. Even if my symptoms don’t fade from here, I will still be able to live reasonably well and happy.

I can assure you that your life is not gone forever, I remember thinking the same thing and I still do sometimes. It’s just going to be different for a while and then it will slowly change for the better I believe. As least it has for me and most people on here. Finding the right medication, diet, and lifestyle seems to be the key. I tried just diet and lifestyle for quite while and that wasn’t enough - I needed meds too. And then managing anxiety and depression is tough too. I printed a poster next to my bed to help me with bad thinking patterns:

  1. Never give up (there is always hope - a new treatment / drug to try)
  2. Stay connected (with other people and your own body)
  3. Do your best (can’t do what I used to, but I can do some)
  4. Don’t struggle (try not to waste energy, maybe there is an easier path somewhere else)

These are kind of obvious and cheezy, but when I am really suffering bad it helps me quite a bit. The psychological aspect of this whole thing is really the pits. Some counseling / psych help might be a good idea. Just keep working through your doctor’s treatment plan and keep going and you will get some progress. If you have any specific questions, just ask us, there are plenty of resources here and we all understand what you are going through.

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I can totally relate to this so wanted to offer some reassurance I am also on nort now up to 40’mg it’s totally normal to feel way worse before better I still get this with every increase . The changes nort has made have been so slow and not a week to week thing more month to month I’m now 3 months in. Soon to be going higher but 4 months ago I felt just like you and now I feel more optimistic mostly because I can do more even with the daily symptoms . Def stick with it and give it time to work :slight_smile:

Thank you so much for this. I know that patience is important and am trying to imagine days that will feel better. I think it’s hard knowing that I am now doing all the things that I am supposed to be doing (medication, supplements, lifestyle, some diet changes) and things feel worse, not better. But I will stick with it and hope that I have lucked out and the first medication will work for me. Wishing you the very best as well.

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