Looking for Support

Hi all,

Looking for some support today. I’m thinking about making some life changes and just want to get a feel for what other migraine and vestibular migraine sufferers have experienced.

Finally, I have had a little relief from the vestibular symptoms but my migraines just won’t let up. I’m feeling pretty defeated to the point that I’ll try any daily preventitive, lobotomy, whatever. I still have another week or 2 before my otolaryngologist will see me again, and would rather avoid meds if i can (but again, feeling desperate). He wanted me to try HYH diet for 2 months, almost there and really no improvement unfortunately.

The PT I’m working with emphasized how important it is for migrainers to have a regular daily schedule and that variations can throw us out of wack. I work a remote job right now so I think being on my own schedule thats extremely flexible is a blessing for when i dont feel well, but also perhaps may be bad for me. (Side note: her session of craniosacral therapy cured my migraine today, it was pretty wild). The screen time is killing me and for sure triggers migraines, even with a filter on my screen. Thankfully i have a clinical background, and am thinking about shifting back to direct patient care. I’ve been trying to avoid a job change because i know the stress of this will probably cause more migraines. But something is just not working for me. I’ve had migraines almost daily since October.

Has anyone here benefitted from a change in their life schedule/jobs and benefitted from it?

Also, I remember reading in Bucholz or Beh that oversleeping can cause migraines. I struggle with this because if i feel head or neck tension in the morning, i can’t help but want to sleep in (which is pretty much a regular occurrence).

Has anyone here had success strictly regulating their sleep schedule?

I’m sick of how this controls my life. My baby nephew was born a few weeks ago but I’m scared to travel into the mountain’s thinking I’ll get sick and be stuck there all weekend. All of my personal time is consumed by trying to get my migraunes to calm down or stop tjem from happening. I feel like I’m losing all of the things i enjoy. I just hate all of this. Like when will I be able to just go out and do things and not have togp home after an hour because i feel a prodrome? I’m just so frustrated and miss my old way of life.

1 Like

Your last paragraph will resonate with almost everybody who frequents this site. Me certainly. I remember missing the first glimpse of a new baby niece six years ago for similar reasons. A boiling hot brilliantly sunny, clear blue sky July day and I darent leave the house because of photophobia. All I can add is to say that today is a cooler but equally bright day but had the new baby just arrived now I wouldn’t be having a problem today. My answer lies in medication and medication at a sufficiently high dose at that. Diet to a lesser extent but mostly meds and time. Apart from that I’d say don’t beat yourself up about it. Unfortunately life is not fair and this condition does stop people leading a ‘normal’ life and also stops them enjoying life for sometimes long periods. All we can do is take it on the chin and plan treatment to achieve better times.

3 Likes

Helen speaks the truth. What works for most of us is medication in sufficiently high enough levels to get the job done. Avoiding jour triggers is another key, but that alone doesn’t always work. Sometimes I’ll have an episode and think back to why and can’t identify a single trigger event.

Today is a good example. I had plans to drive an hour swat this afternoon to watch my 13 yo grandson play his first baseball game of the season. Every other game has either been rained out, or the other team couldn’t field enough players, or his team couldn’t field enough players. Today all the planets have aligned and the game is going to happen. I was excited and ready to go.

I went to the dentist this morning for a cleaning and noticed on the way I was having trouble keeping my pickup between the lines. Then after the hygienist shined her light in my eyes and poked around on my teeth, I found I could barely make it home. I am so dizzy at this point, I am having great difficulty typing this response.

So no game tonight thanks to my VM friend. What triggered it? I have no idea. The hygienist didn’t help, but she didn’t start it, she merely exacerbated it.

Another disappointment for me, and I’m sure my grandson. I have to remind myself there will be other games and surely more disappointments. This one was truly bitter because it was his first game on the Junior Varsity.

But for support, you are in the right place. A few years ago we were all on our own to figure it out on our own. Now we have places like this forum. The people here have or are currently goIng through what you are going through. They can help or at least point you toward help.

If you haven’t already, fill out one of the profile pages in the Personal Diaries section. It will help the experienced folks give you better direction. James can be of assistance finding th template for the form. His user ID is @turnnround.

2 Likes

I needed to hear this. Thank you Helen.

1 Like

I was so nervous about my last dental cleaning but they seemed to take it easier on me when i explained that i was having a VM attack. I’m sorry you didnt make it to you grandson’s game, that must have been pretty deflating. I’m sure you will get to one soon as you said and really enjoy your time with him :blush:.

Thank you for the idea of filling out a personal diary. Maybe i can do that this weekend when I have less screen time in my plate.

I made it to a game this afternoon. They had so many rainout/COVIDOUT games earlier in the season they are now making them up. He pitched a couple of innings and went 1 for 1 at the plat with an RBI. But the lost 7-2. Monday is another game and my wife is off, so if I have an episode, she can drive me there and I can watch anyway.

1 Like

My vestibular attacks showed absolutely minimal correlation to so-called ‘triggers’.

I think this ‘trigger’ framework is potentially a little bit flawed and simplistic. It’s gained popularity to fit the ideology of ‘migraine’ as the cause. I believe the ultimate cause may not be migraine and whilst some ‘triggers’ can clearly make the neurological symptoms worse (including precipitating real migraines), sometimes there definitely is no identifiable trigger because the root cause of this condition has simply not been identified (and dealt with!).

1 Like

I must agree. Sometimes I think the trigger philosophy is a solution looking for a problem, so to speak, and the migraine community has been quick to drink the kool-aid. When I do think I’ve matched up a trigger with a migraine event, I think of all the times I’ve experienced that trigger and no event has occurred. If it truly was a cause and effect situation, wouldn’t it be consistent?

Yesterday is a good example. I poked the bear real good and nothing happened. I did a 2RBC donation at Oklahoma Blood Institute and then hopped in the car and drove an hour away to watch my grandson play baseball. In the process, I upset my eating schedule, pushing lunch back over 2 hours and then having a sandwich instead of my usual salad with protein on top, followed by a protein shake an hour later. Normally the protein shake is 2.5 hours later. Then I drove back home where we ordered out an Outback filet, salad and sweet potato. I haven’t had beef in 15 months. I overate yesterday by 1500 calories and in the process overate sodium by about 5 grams. My eating schedule is normally regimented within 30 minutes and very structured in regards to the types of food I eat. I normally eat five to ten servings of fruit and vegetables a day, two or three protein shakes, two to three lean protein servings, one or two grain servings. No processed sugar, no red meat, no processed grains, and under 2500 mg of sodium.

While I was at the game, the temps were cool, around 14°C but the wind was horrible. My sinus cavity got chilled and since it was causing a sinus headache, I felt sure I was going to get a migraine. Chilling my sinus is supposed to be a trigger. The light was very bright since it was a very sunny day with a few drifting clouds.

I finally had to go sit in the car to warm up. When I got out of the car to resume watching the game, I got so light headed my granddaughter told me to sit back down. She could visibly see I wasn’t right. But sitting down caused it to pass and arising slowly did not bring it back on. It was clearly a result of low blood pressure.

The end result was no migraine, no dizziness, no vertigo. The closest I got to migraine symptoms was the lightheaded sensation when I stood up too fast.

So I gave my migraines several known triggers, for me, to rise up and punish me and I got nothing. Maybe there isn’t anything to this trigger thing, or maybe the triggers do set them off sometimes, but not always. Who knows, it’s just one more mystery to the puzzle.

3 Likes

Yes, I quit my job for a few months and then found another. It was a bit rocky moving things around, I won’t lie. I was slightly better for it, but for me personally it wasn’t a big factor. Finding the right treatments that worked for me were bigger than changing jobs, but of course it could be completely different for you. As for sleep schedule I have a 7 month daughter at the moment so I can’t really comment on sleep schedule, lol. I use Gabapentin when I have trouble with sleep and it works great for me and I wake up feeling very clear headed. Again, part of “finding the right treatments” for VM and associated conditions like insomnia / anxiety.

We completely relate, just keep going you will likely get there.

1 Like

I agree with this idea about triggers. I think my triggers are mostly “internal” rather than externally controlled. I’m not saying that others aren’t different but this is I think the issue here in that everyone is treated the same.
My dad was diagnosed with epilepsy in his late 50’s - something that I feel was a ridiculous misdiagnosis as he’d never had seizures until that point. He’d been taking diazapam to counteract side effects of another drug he’d been taking for an autoimmune condition since his late teens but noone thought to investigate whether that was still necessary and actually probably wasnt as he could have controlled that another way.
I’ve since found out that other members of his family suffered from “nerves” (yes really) but cant find out what that actually means. Since i started taking anti epileptic drugs for migraine my symptoms have dramatically improved - so is my issue actually linked to my nervous system you have to wonder?

1 Like

This is so interesting. It seems reasonable to think there is a connection.

Question. What specifically do you find the gabapentin helping you with in regards to sleep? I ask because in regards to length of sleep, I’m okay, but quality is another story. When things flare up, i feel like my eye balls are shaking (which i do get nystagmus, so they actually are) and my brain is spinning when I close my eyes.

.

According to WebMD website ‘vestibular migraine is a nervous system problem’. By pure coincidence I came across that from the first time earlier today. Not sure how accurate the description is though.

When It comes to family members suffering from ‘nerves’ and being a bit older than you are it was a commonly used term for anybody suffering any form of emotional/mental stress through years not long gone by. I’ve heard it used to describe many people from my own mother who was bipolar to First World War veterans victims of what is now called PTSD to a neighbour who was afraid of cows. Vague enough to be totally meaningless I’d guess but it’s how it was before the days of more openness relating to health and the start of current obsession with mental health of the last few years.

Quality of sleep is better with Gabapentin. My psychiatrist says it’s one of the only medications that actually improves sleep quality in some people and its being used more often “off label” for this purpose. I don’t really notice much except I sleep deeper.

1 Like