Silent Migraines

Posted by gwynboom @gwynboom, Dec 16, 2018

I’m not sure if this is the correct area to post this… I’m new on here.
My 31 year old son 5 years ago began experiencing slight dizziness. Which 5 years later has progressed to extreme dizziness, unstable feeling, feeling like he’s going to faint, feeling of unwell. I’ve seen him go from being very active to literally not being able to get out of bed with these symptoms. His PCP referred him to a neurologist who referred to a cardiologist to rule out heart issues.. were none then to a ENT to rule out inner ear issues.. there were none. Migraines with pain run in my family.. the neurologist states due to the history and his symptoms he diagnosed vestibular migraines but not concrete on the diagnosis. He’s taking Amovig a new migraine injection.. helps some .. he’s also taking profanol for his anxiety issues he’s now developed. He’s had to file for short term disability due to this. He is also monitoring what he eats for triggers. These symptoms go from slight to extremely severe daily. What else can I do? Has anyone experienced this? And if so how are you? We feel so alone in this!!

I was diagnosed with intractable migraines so I get the pain with them. But, over the last 6 months or so, I've been getting worse. I get extremely dizzy, nearly fainting. I get nauseous and feel really sick. I get no pain during these episodes. I thought maybe my tumor was back but a scan ruled that out. My PCP put me on Meclizine for vertigo but it didn't help. I did a little research and I have the symptoms of the same ailment your son suffers from. I have yet to get an actual diagnosis but everything else was ruled out.

@smurfieallena

I was diagnosed with intractable migraines so I get the pain with them. But, over the last 6 months or so, I've been getting worse. I get extremely dizzy, nearly fainting. I get nauseous and feel really sick. I get no pain during these episodes. I thought maybe my tumor was back but a scan ruled that out. My PCP put me on Meclizine for vertigo but it didn't help. I did a little research and I have the symptoms of the same ailment your son suffers from. I have yet to get an actual diagnosis but everything else was ruled out.

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I’m so sorry to hear your suffering… they first put my son on meclizne as well didn’t help him either. I hope and pray your tumor does not return! I also hope the doctors can find out what’s wrong! You and my son are so young to be going thru this. My son should find out about his short term disability soon praying for his sake it goes thru so he can then focus on finding a definitive diagnosis and recovery verses working 60 plus hours a week and trying to find an answer…. please keep me updated!

@gwynboom

I’m so sorry to hear your suffering… they first put my son on meclizne as well didn’t help him either. I hope and pray your tumor does not return! I also hope the doctors can find out what’s wrong! You and my son are so young to be going thru this. My son should find out about his short term disability soon praying for his sake it goes thru so he can then focus on finding a definitive diagnosis and recovery verses working 60 plus hours a week and trying to find an answer…. please keep me updated!

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Hi, @gwynboom – welcome to Mayo Clinic Connect. If you click on VIEW & REPLY in your email notification, you will see the whole discussion best.

Sorry to hear your son has experienced this extreme dizziness, unstable feeling like he’s going to faint and feeling unwell. Glad the migraine injection has helped some.

I'd like to introduce you to @jenglereckedbin @jenmae @contentandwell @lulu1962 @msb18, who have all mentioned migraines, for their insights on your son and what he's experienced.

Since you said he was diagnosed with vestibular migraines but the diagnosis was not concrete, have you considered getting a second opinion, @gwynboom? You also mentioned monitoring what he eats for triggers. Has this made a difference for his symptoms?

@smurfieallena, have you found anything that helps the pain, dizziness, nausea and nearly fainting with your intractable migraines?

@gwynboom Is your son on a beta blocker or a calcium channel blocker? They're very often prescribed as a preventive for patients experiencing frequent or chronic migraines. Without Verapamil (360mg/day), my migraines are unreal. I am violently nauseated, have unbearable head pain and am extremely dizzy. With my Verapamil, the pain, dizziness and nausea is more manageable.

@lisalucier

Hi, @gwynboom – welcome to Mayo Clinic Connect. If you click on VIEW & REPLY in your email notification, you will see the whole discussion best.

Sorry to hear your son has experienced this extreme dizziness, unstable feeling like he’s going to faint and feeling unwell. Glad the migraine injection has helped some.

I'd like to introduce you to @jenglereckedbin @jenmae @contentandwell @lulu1962 @msb18, who have all mentioned migraines, for their insights on your son and what he's experienced.

Since you said he was diagnosed with vestibular migraines but the diagnosis was not concrete, have you considered getting a second opinion, @gwynboom? You also mentioned monitoring what he eats for triggers. Has this made a difference for his symptoms?

@smurfieallena, have you found anything that helps the pain, dizziness, nausea and nearly fainting with your intractable migraines?

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@gwynboom @lisalucier My migraines were definitely hormonal and went away after menopause so there's no help for your son there. Even though they were from hormones though I definitely noticed that certain foods made them worse, like chocolate (I could eat white chocolate) and onions. I know that some people have problems with aged cheese, and vinegar. Vinegar may have exacerbated mine when I had one but I don't think it ever caused one. Figuring out foods that contribute is a trial and error thing and it varies for everyone, but the two I mentioned are very common triggers.

I hope you are able to find some answers. I know too well the misery of migraines, and now my daughter is going through that too. I have heard that Botox injections can help, and there is another procedure now also that supposedly offers great relief. I wish I remembered more about it but I can't. If you are interested in that I will ask my daughter, she may remember.
JK

@contentandwell

@gwynboom @lisalucier My migraines were definitely hormonal and went away after menopause so there's no help for your son there. Even though they were from hormones though I definitely noticed that certain foods made them worse, like chocolate (I could eat white chocolate) and onions. I know that some people have problems with aged cheese, and vinegar. Vinegar may have exacerbated mine when I had one but I don't think it ever caused one. Figuring out foods that contribute is a trial and error thing and it varies for everyone, but the two I mentioned are very common triggers.

I hope you are able to find some answers. I know too well the misery of migraines, and now my daughter is going through that too. I have heard that Botox injections can help, and there is another procedure now also that supposedly offers great relief. I wish I remembered more about it but I can't. If you are interested in that I will ask my daughter, she may remember.
JK

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Botox helped someone I know too. Good luck

@msb18

@gwynboom Is your son on a beta blocker or a calcium channel blocker? They're very often prescribed as a preventive for patients experiencing frequent or chronic migraines. Without Verapamil (360mg/day), my migraines are unreal. I am violently nauseated, have unbearable head pain and am extremely dizzy. With my Verapamil, the pain, dizziness and nausea is more manageable.

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So far they have him on amovig (injection) neurotripiline (not sure of spelling) and propanol.. he has no pain with these episodes. In speaking with his oldest sister she experiences the same symptoms except she has pain ( she has been diagnosed with migraines) so far the meds have lessened the frequency of his symptoms.. instead of every day it’s now every other day … he was approved for his short term disability so now he can focus on seeing what works and what doesn’t verses seeing what works and working 70 to 80 hours a week

@contentandwell

@gwynboom @lisalucier My migraines were definitely hormonal and went away after menopause so there's no help for your son there. Even though they were from hormones though I definitely noticed that certain foods made them worse, like chocolate (I could eat white chocolate) and onions. I know that some people have problems with aged cheese, and vinegar. Vinegar may have exacerbated mine when I had one but I don't think it ever caused one. Figuring out foods that contribute is a trial and error thing and it varies for everyone, but the two I mentioned are very common triggers.

I hope you are able to find some answers. I know too well the misery of migraines, and now my daughter is going through that too. I have heard that Botox injections can help, and there is another procedure now also that supposedly offers great relief. I wish I remembered more about it but I can't. If you are interested in that I will ask my daughter, she may remember.
JK

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Yes he has noticed that food plays a factor in the intensity of his symptoms.. he’s been staying away from nitrates, chocolate, caffeine, msg etc and the intensity of his symptoms have lessened but still intense if that makes sense…

@gwynboom

Yes he has noticed that food plays a factor in the intensity of his symptoms.. he’s been staying away from nitrates, chocolate, caffeine, msg etc and the intensity of his symptoms have lessened but still intense if that makes sense…

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@gwynboom Be aware of onions too. That one hit me one evening when I had a burger and it had raw onions on it. I almost immediately came down with a migraine!
Caffeine often actually helps with a migraine. I found that if I did not have a couple of cups in the morning I would be more apt to get one, and many medications that help migraine, like Excedrin, have caffeine in them.
JK

Hi! Hooray for Aimovig and Botox and the ones I take daily. Please try avoiding bright lights, computer time, driving especially at night. It is the number of inputs that can trigger onsets. My symptoms are the result of an accident with TBI, so maybe different. Check out the caffeine and OTC's beofre mixing with any prescription. Oh, I wear an eye patch on occasion when my eyes stop working together, and Johnny Depp and Disney are wrong: it is not sexy…people give me wide berth when it is on!

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