ISO perspective from veterans

New here, let me introduce myself 🤝
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I developed atypical migraines disease 3 years ago after taking a job as a software developer and starring at the screenings for 10 hours a day.

I never get headaches but dizziness, and in busy environments the feeling that I’m about to faint.

I’m on several medications to help me function.

It has been three years but I am just now coming to terms with this disease and trying to get my head around what it means for me.

What I would love to hear is from some people who have been coping with migraine disease for longer than I have who can help me gain some perspective on the disease.

For instance, is my goal in life now to absolutely stay under my daily migraine threshold, even if that means quitting my somewhat stressful but rewarding job?

Or is a low level of Daily dizziness now simply a part of my life?

Does this get better/worse over time?

Thanks a lot

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Hey James! I am an electrical engineer with a similar background as you. I’m about 3.5 years in and I’m nearing 100% recovered. The 1st year was awful, the 2nd year there was a glimmer of hope, and then 3rd year was where I recovered the most.

If you are fairly certain that your problems are of migraine-origin (and not physical trauma to the ear), my main advice is to throw the kitchen sink of migraine treatments at it. This is how I improved the most. If you need to pause in your career a bit, that can help too, and when you get better you will do fine with regular stress again. I blamed myself for a long time thinking I was stressing myself out, so I took 6 months off and had very little improvement. That’s why you need to think of this thing as a disease and not your fault due to selecting a career that has some stress. I think an ideal job will have stress from time to time, this is normal. I am happily working at a computer now between 8-10 hours a day with very little symptoms.

Can I ask what medications you are currently on? And ones you’ve tried? I don’t have headaches either, but do you have symptoms of head or nasal pressure?

Welcome to the forum and don’t hesitate to post frequently on your situation so we can try to help!

Erik

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Thanks a lot for the response aerie.
Glad to hear that you have made such a recovery and stabilized your life! That is really great. I hope to achieve what you have.

In my response I’d like to:
-Share the medications I’m on
-Share my lingering symptoms
-ask some clarifying questions regarding your response

Medications
Gabapentin (900 mg per day) to stop the sensation of heavy legs I was getting. This has been largely effective.

Topiramate (125 mg per day) to stop the episodic severe cases of dizziness I was getting. This has been largely effective.

Mirtazapine (30 mg per day) not sure way my neurologist prescribed this. It’s an anti depressant.

Lingering symptoms:
Most days I experience dizziness to some extent. On a scale of 1 - 10, I hover around 2-3. If I venture into a chaotic environment, an indoor amusement park, etc, I will become quite dizzy and overwhelmed (like I’m about to faint). Then, the next day my brain will Still be provoked.

My dr thinks some of this could be rooted in anxiety. Possible, but I don’t think so. It feels like my brain genuinely struggles in these environments.

When I go off into the woods for days at a time, the dizziness goes away. I’ma teacher, when I had last summer off, towards the end of the summer the dizziness stated to go away totally.

Clarifying questions:
You said that if I’m sure that my condition is migraines in origin I should throw all migraine techniques at it. This i assume is learning my triggers and avoiding them. Medication. Stress reduction. Can you expand on this?

Is one able to condition them themselves to triggers? Or do you learn your triggers and do all you can to avoid them? Even if that means changing jobs, etc.

What is your relationship like with your neurologist?

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Hey James, all good questions.

I was at 2-3 on the symptom scale for a long time, probably the last 1.5 years.

I also had nasty anxiety, but the dizziness / migraine stuff was the cause. Don’t let the doctor convince you your anxiety is causing dizziness. If he/she had the condition, they would “get it”.

It sounds like you are tolerating Gabapentin and Topirimate, both very good traditional migraine preventatives. So you got this base covered, but there are a few other migraine techniques I would use in parallel.

I would suggest, especially if you have head or nasal “pressure”, to go with the Cefaly device. I think using it was a real turning point for my recovery.

As another suggestion, the new CGRP medications are worth trying - they can be used at the same time as your Toprimate/Gaba as I understand it. I am using Emgality while I’m still on Amitriptyline and have had good results so far.

Others have had great success with Botox - another treatment that can be done in conjunction with your normal meds.

Learning your triggers and avoiding them is definitely helpful, but in my experience this is simply “management” of the condition, not something that was particular helpful to make great strides of progress like clinical migraine treatments. Other people are different though and I respect that. Certainly a migraine diet has been helpful for me, although I am not as strict as I used to be.

My first neurologist was an older man who was not helpful at all. I found a younger neurologist that has been very helpful. He doesn’t understand the anxiety component at all, or all the other weird symptoms I have like shortness/heaviness of breath, or the heavy legs you describe. So, I’ve had help with a psychiatrist as well.
But my neurologist keeps an open mind and offers new solutions each visit. He respects my decisions to take or not to take meds.

So to explain throwing the “kitchen sink” at migraines, I’m talking about all the parallel things you can do at the same time. Traditional meds are one thing, which it seems you have covered, so that is good. The others are things like Cefaly, Botox, CGRPs, GammaCore, CBD oil, exercise, diet, sleep, etc… The more parallel things you can do at once, I think the chances of success are greater. Trigger avoidance can definitely be part of the equation, but like I said for me that is just managing the condition from getting worse. I tried increasing my meditation and mindfullness practice, hoping I would get a handle on it naturally, but no, for me it was mostly a disease that needed strong medical treatment.

Wow, I wrote a small book here, I’ll stop and see if you have any follow-ups!

Erik

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Well said Erik. Think that goes for a lot of the more seriously affected Maver’s including me. It is a question of building up threshold tolerances until they are strong enough to stop the increased hypersensitivity. Then coming at it from the other angle and reducing the triggers until the two hopefully meet in the middle and return the sufferer to a more normal sensory state in which they can comfortably live. Reducing triggers by whatever means it takes is time out from work, changing employment etc is extremely important and often not given sufficient priority. Helen

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Well, redefining who you think you are or were or are supposed to be is no mean feat. Though once you wrap your head around it, the rest is a lot easier.

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That is really powerful Flutters.
I’m getting the sense that a redefinition of life is what I’m up against.
I’d love to hear your story if you up to it.

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you become what you think about!

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That’s why we have a Personal Diaries :open_book: Category. Emily’s is https://mvertigo.org/t/musings-and-sometimes-funny-stories/17828?u=turnitaround

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I guess I best update my diary! I’ve been a bit distracted what with the world falling apart. Seattle got hit early. We’re doing these day by day contingency plans at the household and community level. It’s all very surreal.

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Hi James
Welcome to the club. Although you have had this longer than I have I thought I would just chip in as like you I didn’t have headaches and I went straight in with vertigo, vomiting ,dizziness, being off balance and pulsating tinnitus which is now ringing tinnitus. I was very surprised when I was diagnosed with migraine variant balance disorder which apparently is common if you have a history of migraine in the family, which I do, prone to travel sickness, which I am, and unable to read in the car without getting travel sick - I tick that box too, I very occasionally used to get throbbing headaches accompanied by an upset stomach, which I now believe may have been a migraine.
My symptoms began in March 2018 and the treatment I was prescribed seems to have stopped the dizziness and vertigo so I feel very lucky that I am not constantly dizzy and my eyes don’t feel as if they are bouncing around and my head isn’t fluttering - there were some really weird symptoms.
I was put on Pizotifen and my neuro-otologist Dr Surenthiran’s 6 Cs diet and that seems to have helped. . However I am in the process of reducing the Pizotifen dosage and now only take 1 x 0.5mg per day and I am feeling a bit unbalanced with a touch of ear pressure , so I may have to up the dosage again - that’s the thing with this it is up and down with good days and bad days.
For me getting rid of the dizziness was crucial - I am not sure I could have coped with that - so I was lucky that the meds worked for me - and the diet of course which I am still on. I guess it took 8 months for me to start feeling more normal - I was off sick for 5 months as there was no way I could have worked.
Have you looked at the Heal your Headache by David Buchholz - it makes very interesting reading and it made a lot of sense - his diet regime is very extreme though and I prefer to stick with Dr S’s 6 Cs which is less restrictive.
I think if my job made my dizziness worse I may have had a rethink about carrying on with it, but luckily I got better rather than worse. Can you take lots of breaks at work? Staring at a screen for 10 hours will definitely not help,the dizziness - it’s not good for your neck and shoulders either, but building in lots of short breaks might help. I find that if I am on my computer too long, I start to feel off balance so have to remember to move around a lot!
I hope this helps. Jan

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It took a while, but here is my best shot at an answer. And no, I haven’t figured out what to do as I remake myself in this brand new corona-world. I was just getting to that when the pandemic and the coming economic collapse came along to tell me I was meant for some other, as yet unknown, direction. I recognize that the post referenced is way off subject, but for me it’s all one thing and one journey.

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