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Trigger avoidance over time: helpful or hurtful?

Posted , 4 users are following.

DizzyLizzy68
DizzyLizzy68

I have a question, hopefully for a medical expert. I have taken up the migraine diet to help with my MAV/Vestibular migraine that had become more chronic than not. I also take the preventative Propranolol daily. I avoid trains and boats which cause motion sickness and weeks of bouncy dizziness. It seems I am doing what most experts recommend. My diet is so very limited, and all of this did help things. But then after a year, it all came back in spite of trigger avoidance/medication. I am just wondering if all this "trigger" avoidance could actually be working against me in the long run, by making the brain even more sensitive? My neuro had made a joking comment that I had a very sensitive vestibular system and maybe I should be made to purposefully get dizzy to reset it. She was joking, but it got me thinking about migraine disease more like allergy disease, where one is exposed to offending agents to build tolerance. Any thoughts from the medical professionals? Could the brain and/or vestibular system be reset or made more resiliant in this manner?

0 likes, 16 replies

16 Replies

  • eleftherio33095
    eleftherio33095 DizzyLizzy68

    Posted

    Vestibular migraine enhances susceptilbilty to motion sickness.  Therefore you have a greater chance of motion sickness than someone without vestibular migraine.

    Can you clarify what came back?  Do you mean that the vestibular migraine is now worse despite the preventive medication?

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • DizzyLizzy68
      DizzyLizzy68 eleftherio33095

      Posted

      The attacks of unilateral tinnitus, nasal congestion, facial pressure, back of neck pain combined with either rocking sensation, unsteadiness, or vertigo have come back with diet mods and preventative meds. They last hours, and the only thing that helps is klonopin. These were the attacks I had initially, diagnosed as migraine, that ceased with med and diet mods. I am wondering, in general, if all this avoidance can make the brain more sensitive in the end.
    • eleftherio33095
      eleftherio33095 DizzyLizzy68

      Posted

      Thank you.  I do not believe that not-avoiding could have been an option.  You could not allow yourself to have the more intense symptomes of travel sickness on a frequent basis.  There is nothing in the medical literature that states that people who have travel sickness should allow themselves to be exposed.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • jonAustralia
      jonAustralia eleftherio33095

      Posted

      No, thank you for giving me hope that someone who actually practices medicine out there really cares, proving my earlier theory that no one in the field of medicine would respond to DizzyLizzy. Thank you again Jon.
  • jonAustralia
    jonAustralia DizzyLizzy68

    Posted

    This message is coming from someone who is always positive, BUT, your suggestion that a medical expert may respond has me thinking "" good luck with that "" as I am yet to see such a respondent and I have been on the site for years. So, as a non medical expert I respond that I am a simple believer in just omitting all added salt and choosing very low salt level food, drink heaps of water, exercise in a safe environment as often as you can (please note that this means more often than you really feel like it) and staying positive. I have never taken any medications even though I have been tempted during the bad early days of both my onsets and certainly have not spent good money after bad seeing so called medical and specialist experts, sad as that may seem. As an opportunist professional, I take the opportunity to discuss our illness with every medico, physio, Chiro and other allied health professionals and pharmacists that I meet, sadly few have any knowledge other than simply knowing the various names of our illness, oh dear. Yes, I am an optimist, but sometimes it's hard to be when there are so many downsides of appearing drunk in your gait, even before enjoying the occasional cold one in the sultry tropics in which I live. Good luck, one day, help shall arrive, warm regards, Jonathon biggrin
    • DizzyLizzy68
      DizzyLizzy68 jonAustralia

      Posted

      Jonathon,

      I actually do try to lower salt, just in case this has a Meniere's type of component to it.  I think that is good for health regardless of having a condition or not.  But I haven't seen anything on migraine and salt.

      Are you diagnosed with a migraine disorder or Meniere's?

    • jonAustralia
      jonAustralia DizzyLizzy68

      Posted

      Hi again and thanks for taking my post as it was intentioned, without a grain of salt so to speak biggrin.

      I have Vestibular Neuritis (VN) which manifests by having dizzy microsecond bursts whilst walking, especially in low light conditions so I try to avoid these. My first onset was after I had a virus and started by being violently sick for around 6 hours (just rested my exhausted head on the porcelain until I could crawl back to bed). Being alone, I rang an ambulance and was admitted to ER for 3 days and received the diagnosis and some friendly and caring no nonsense advice that all would be well in about 2 weeks and to take it easy as the giddiness would remain; they were right and all became totally normal after around 2 months, all was well and back to surfing and running. Two years later, same start but different finish, some ten months later still walk strangely at times and bright lights leaves me with a peripheral wavy eyes situation (silent migraine?) which I deal with by putting my head under a pillow (unless in the supermarket of course) and after resting for half an hour, all is well regarding eyes but not, sadly, with drunken gait. Sometimes i just think Feck it (me being Irish n all) and get drunk anyway which by the way is not recommended :-).. So, I just know that those who are suffering, especially those in despair just have to hang on (easier said than done I know) but things will improve. I just wish that someone will one day take us all on as a cause, because we deserve it, don't we? wink .

      Similar symptoms that I occasionally get and I note are shared by others are a sore head just behind each ear, tiinitis and total exhaustion for no apparent reason although I have read that as our brain is now doing all the balance calculations that it used to get advisory reports from combined eyes/ears, then it is feeling the extra work burdon; this sounds totally reasonable to me, so what do I do? Go for a bloody run up the hills for two hours; I did mention that I am Irish didn't I? One's gotta laugh, doesn't one? Fond regards, Jonathon

    • Pupsicle
      Pupsicle jonAustralia

      Posted

      You definitely should walk around the supermarket with your head in a pillow! ;-)

      My trigger for my silent migraines is light and I wear TheraSpecs migraine glasses to help with that (they also help any migraineur who gets light sensitivity, photophobia, during a migraine). The FL-41 tint that they are has been proven in studies to work. The tint blocks the harmful blue/green wavelengths of light, which is where the flickering of fluorescents is. I do highly recommend them! I have the indoor ones (I wear a different brand of migraine sunglasses outside because they're darker than the TheraSpecs ones). I have been wearing them for years.

    • Pupsicle
      Pupsicle jonAustralia

      Posted

      Oh, and instead of using a pillow, I recommend using an eye mask people sleep with. ;-)
    • jonAustralia
      jonAustralia Pupsicle

      Posted

      OMG, why didn't I think of the eye mask? Then again I do have my favourite pillow and people have become used to seeing me at the shopping centre with my thumb in my mouth and pillow over my eyes; silly me, I am making light (no pun intended) of a serious subject. Your responses are indeed positive and once again highlight (bloody puns again) the need for a list of potential helpful devices and "work arounds" the symptoms options; thank you for listing them. I would like respondents to give me at least their first name as I have used mine, it kinda helps alleviate the fear that I am perhaps chatting with a robot (Jon quickly adds, "no offence intended, Pupsicle") and I look forward to hearing more of your insights. Kind regards, Jon
    • Pupsicle
      Pupsicle jonAustralia

      Posted

      Can you explain how sucking your thumb helps your symptoms? I am very intrigued! ;-)

      The eye mask I recommend for sleeping is the Tempurpedic one (from the mattress company). It doesn't leak any light in, even around the nose, and is plush and comfy. I have tried many brands and this is the one that works best for me.

      Of course I am a robot; aren't you? My name is R3-D6. :-) Oh, that translates to "Jennifer" in human speak. Beep-boop-beep-bop!

  • Pupsicle
    Pupsicle DizzyLizzy68

    Posted

    No, migraine doesn't work like that and overexposure to your triggers can actually make your migraine episodes worse/change (has happened to me). Migraine is not like an allergy. It is a neurological disease and in some ways is related to epilepsy (seizures), so if you want to compare it and how triggers work to something, compare it to epilepsy. Some of the meds used for migraine were made for epilepsy, in fact.

    You have to figure out what your trigger(s) is/are (it may or may not be certain foods) and the best way to do that is to keep a migraine diary. There are several migraine diary apps for phones and there are migraine diary sheets you can print.

    Migraineurs are more likely to be susceptible to motion sickness. I am also wondering if you have been checked for Mal du Debarkment Syndrome (I think it is called)? That's a problem caused by things like being on a boat/ship and is like you feel like you're still on it long after you got off (it is normal to have "sea legs" for a few days after a cruise, but not a few months, for example). I knew someone who got that after a cruise and it lasted for a year - he can no longer go on boats/ships because it could trigger another episode.

    Unfortunately, both migraine preventive meds and migraine abortive meds can stop working. You can try to increase the dose (under doctor's orders/prescription, of course) to see if that helps for a while or you can try a different med. So, that is another thing that might be the case here.

    Also, be sure to check your meds to see if your pharmacy changed the manufacturer (it should be listed on the bottle label and/or paperwork they include with the meds) of a generic med or switched you from brand name to generic, as not all meds, especially generics, are created equal. Generics can have a 20% difference of the active ingredient in them, which means they could have more or less of it in any given batch, even from the same manufacturer. Meds made in certain countries have a tendency to have a large swing of difference - you can look up your med's manufacturer online to see where your meds were made.

    • DizzyLizzy68
      DizzyLizzy68 Pupsicle

      Posted

      Yea, Pupsicle, I'm sure your correct.  Was just hoping for some wild new research or something!

       

      My biggest triggers are thought to be hormones.  I am female, 48y/o, perimenopause. I have had only one regular migraine every year or three years, then BAM!  2.5yrs ago this all started, and the pressure symptoms are all on the left side ONLY.  I also suffered a sudden sensoneural hearing loss on the left last year, that returned in 72hrs with prednisone.  I was worked up for Meniere's, and told not a diagnosis at this time.  I was convince I must have some kind of tumor or blood vessel disorder for this to be so one sided, but I've had two MRI's, one of the head and one of the IACs and all normal except a few small "migraine" white matter lesions. 

      I have increased the propranolol and am starting to feel better. Dr. really wants me to try Verapamil.  I am thinking Topamax since I have read in numerous research articles that if you stay on it for a year, it can reset the brain for migraine activity.  But am concerned about side effects since I am a scientist, work with nasty chemicals, and give presentations and such. I don't need speech issues and numb extremities!!  For now I am sticking to the higher dose of propranolol, and take Klonopin when attacks hit.  It allows me to function in my job.

      My dizziness tend to be episodic vs. constant.  But the episodes can run together when things are bad.  My neuro is also having me do physical therapy for my jaw/neck.  My jaw is misaligned, and pops on the left.  Supposedly there can be some overlap, and this condition can even be a trigger.  But knowing my history (I was NEVER able to take any of the various types of birth control pill or would have a visual aura for hours on end and one migraine after another); I believe I have to ride out the hormone storm before I can be off preventatives. 

    • Pupsicle
      Pupsicle DizzyLizzy68

      Posted

      Haha, well it is good to be hopeful! :-)

      Yeah, topiramate worked well for my migraines and the symptoms were lessened for a long time after I stopped taking it (due to an allergy to an ingredient in it), so I am a fan of it. Not everyone has a good experience on it, though, as some call it "Dopeamax" because the brand name is "Topamax" and it made them dopey. I was on it for six months and, besides the allergic reaction, the only side-effect I had was that soda didn't taste as good (not that I drink a lot of soda anyway). It definitely helped the vertigo and for at least a year after, the vertigo was still very mild. Even now, several years later, the vertigo is not as bad as it was prior to the med (it was pretty bad then).

      But, as long as your current med continues to work at the increased dosage, I wouldn't mess with things. I have heard about people going back to a med that had worked for them and it no longer worked - a really strange phenomenon! Obviously, if your med does stop working even after increasing it, it is time to try something else.

      I know someone who never had a migraine until she had to have a hysterectomy for other health reasons. Now she gets them, typically triggered by weather. This sure is one strange and crazy disease we have! :-)

    • DizzyLizzy68
      DizzyLizzy68 Pupsicle

      Posted

      Pupsicle,

      Thank you for your response!  I really appreciate hearing about your experience with topiramate, and yes, I have heard the term Dopamax! LOL!

      Funny, my migraines make me sound stupid... i know it's part of the symptomology, as I've read.  When in a bad spell, I have periods of time over days that i find it hard to communicate. I sound like a a very old person trying to find my words!  Maybe topamax will have a reverse effect on me??  ha! 

      Again, thanks for your responses.  I appreciate them, as you seem very educated in this realm.  As a researcher myself, I have read tons of journal articles, and i think we are still left with many unanswered questions.   Like, why, back in the 1990s did no one know about MAV?  I was told I had anxiety and treated with meds (some actually helpful since they are anti seizure meds like klonopin).  Is there a surgence of MAV now, or was there just mass misdiagnosis?  I still am curious to see what pans out in the migraine world.  Seems monoclonal antibodies are the next big thing?  It's getting very interesting!

    • Pupsicle
      Pupsicle DizzyLizzy68

      Posted

      Yeah sometimes I get the dumbs during a migraine, too. Very frustrating! I also have memory issues (previously diagnosed as a memory-based learning disability prior to my migraine diagnosis) from the years of migraines.

      I'm not sure when they "discovered" MAV. I was misdiagnosed back then, too, and up until several years ago. Although, that's when I got the vertigo as a symptom, after an overexposure to my trigger, and several years prior to that I had a different type of migraine. My symptoms have changed a lot over the years.

      At least they're working on trying to get a better treatment for migraine, even though it takes a long time to do. I hope it will be helpful to all, or at least most, migraineurs! Too many people are hurting from this disease, which too many people don't take seriously.

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