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Do benzos mask the symptoms or increase the trigger threshold


#17

Bacchisimo-
I do believe my issue is migraine-caused, with temporary vestibular impairment that lasts longer, brought on by the migraine (basilar). I go through a period where I get major attacks (feeling like I’m on a rough boat, difficulty walking, weak/jelly legs, wavy vision, and increased tinnitus, sometimes one sided face or head pain). These major attacks last abt an hour or so. Then in between these attacks I have general imbalance and anxiety. I only rarely have true vertigo, and when I do, it lasts only a few seconds. So for me, the series of major attacks along with the period of imbalance that persists between, I call that a relapse episode. Those last for a few months for me. Then I am fine for awhile. This last relapse episode came at the same time I started getting true hot flashes. Also, prednisone short course helps calm the major episodes down. I am also taking Propranolol as a migraine preventative. I raise the dose with a relapse.

Due to the episodic nature of my symptoms, and having ruled out other diseases, my Neuro says it can only be migraine or menieres. Since my VNG 3yrs ago and the VNG this last May were normal, I am told it is not menieres. So we’re left with migraine. I have a history of migraine with aura worsened by birth control pills, so I could never take them. Seems hormones, especially now at menopause, are a huge trigger for me. My mom also has a history of hemiplegic migraines (that mimic a stroke), so I perfectly fit the description of the typical person who converts to MAV or vestibular migraine later in life.


#18

Bacchisimo, there are migraine glasses. I did have a period a few yrs back when I had to wear them at work because of the screens and fluorescent lighting. They took an adjustment period but worked.

I’ve also had physical therapy for the jaw that was amazingly helpful. Recently, I’ve gone to an upper cervical chiropractor. That has also helped tremendously, and I’m feeling pretty great now. I still start to have an attack when my hot flashes act up, but it is milder and doesn’t last as long.


#19

Thanks for the response. Migraine glasses: You mean blue blockers? Or dark shades? For me, on most days I cannot tolerate screens at all. I have come up with million ways of dimming the light, blocking the blue light, wearing sunglasses, and so on, nothing worked. I work on a distant screen (7 ft away) because I have convergence problems. But the screen is not too big, so I don’t get overwhelmed. I also recently put tape around the edges of my glasses, so I am seeing through a thin slit. I converted the view to B&W.

My symptoms: my dizziness is similar to the feeling you have when you just knock your head against something, except it is constant when it is there. Has bits of imbalance to it, but mostly an awkward feeling, yet I walk straight. The dizziness gets worse with movement of course. I have a lot of nausea too. When my symptoms get worse I have problems thinking. I cannot ignore my triggers because if I do I get a major setback and at that point there is nothing I can do: radio, books, music, tv, going out, talking over the phone,… and even thinking clearly. Being in nature’s white noise (ocean, creek,…) helps calm down my symptoms.

I have done all sorts of PT (including jaw massage), vision and vestibular therapy, chiro, light therapy, cold laser, neurofeedback, you name it :slight_smile:


#20

Forgive if I missed it, but are you taking a preventative med? I dont think I would’ve improved without one (not Klonopin).


#21

I also fit perfectly into that category…hormonal migraines with and without aura when i was younger…then just odd ones here and there in my 30s then BAM vestibular migraine aged 49 a few months into menopause. My nana had migraines and my mam has epliepsy brought on when she reached menopause so a lot of neurological issues down our female route.
Thats what makes me think…could HRT patch help maybe?
Jo xx


#22

I’ve had MAV 15 yrs and I don’t think there is ‘normal’ for MAV generally. Every person is affected differently. What’s ‘normal’ for me, wouldn’t be for you. It varies. Also it can change for each individual. We say it ‘morphs’.

Have you actually been told it’s probably MAV. I know you said you have CI but is the MAV confirmed. From exp I’d doubt it. Doesn’t seem to take much by way of complications for doctors to get confused I’ve found. And CI and MAV hv overlapping symptoms so must be difficult. The neuro-otologist I saw was insistent that one had to have had vertigo to have MAV but other medics apparently don’t agree. You say you have never had vertigo??

I managed to work between acute attacks for a decade with episodic MAV and 90% on it on screens. Mine would go away completely between attacks so it wasn’t a problem. Wasn’t in employment anyway when it went chronic. Know I couldn’t have worked at all (over 3 years+ now) since it went chronic. Many months couldn’t look at any screen at all. In UK would imagine it would be very difficult to obtain benefits with MAV but you’ll have to give it a try I guess. Good luck. I’d guess you’d need a letter from the specialist, might help.

Presumably you have specs with prisms for yr CI. Don’t wear sunglasses indoors what ever you do. Makes you more light sensitivity. You can obtain FL71 rose tinted specs to help with screens if symptoms are produced by light sensitivity. Theraspecs are US ~based. Coloured lens wouldn’t help with CI. presumably you’ve been tested for Irlen Syndrome?

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#23

Jo, it is my understanding per my Neuro that HRT can help women who are getting migraine or MAV that is triggered by menopause. However, in some women it can worsen things. That was my experience a few yrs ago. Now that I believe I am probably postmenopausal, I may ask about trying them again. It sure would be easier to experiment with this if I was not working…


#24

I agree…ive taken some leave from work all next week as im struggling with Nortriptyline. Not that much is going to change in a week but its better than nothing. Im still not going to rule out an HRT patch…i’ll try ANYTHING!!!:grin:
Jo xx


#25

Good luck! I couldn’t tolerate the Nort, but I’ve heard it’s very effective. I take propranolol, but only 40mg normally. The Dr wants me at 80mg, but I feel like a half dead slug. I am pretty strict with diet- I avoid msg, nitrates, onion, chocolate, and red wine. Those seem to be my worst triggers, but they are dose dependent. I also take magnesium and vit D. I feel like they help. If at all possible to keep exercising, that helps too.


#26

Did the Nort increase your dizziness also? Plus its giving a terrible upset stomach…i also take low dose Gabapentin 300mg Magnesium 400mg and ive had 1 lot of Botox treatment…li tried Propamolol 4 years ago and cant remember it helping but i was not taking a high enough dose i think. I wouldnt mind giving it another try. I didnt give Pizotifen or Flunazirine a fair trial either…im useless☹
Jo x


#27

By the way…my headache specialist has never once mentioned any type of food or drink restrictions…
Jo x


#28

Jo, yes, the Nort made my dizziness worse. It was very difficult to walk unassisted while on it. That’s why I stopped it. My Neuro recommended that I stop it for several days, then restart it again. She said that for some, this can stop the dizzy side effect. I didn’t try that as I had enough!

My Neuro also did not say anything specifically about diet. But she did say to keep a headache journal to try to discover triggers. I also had read the Heal your Headache book by Buccholz (very good and not just “headache”). I discovered that certain foods set me off within 24hrs. Hormone symptoms, lack of sleep and weather as well.


#29

It was quite difficult to find “trigger” foods when I felt so awful. I was already at a 9 on the pain / discomfort scale, if it went to 10 it was pretty hard to tell that was a clear trigger.

But I did notice over time that if I adhered to a strict low tyramine diet, my symptoms would become much more consistent over a few days and then week over week I was able to see very slight improvements. So I was never able to pinpoint specific foods very well.

I still cook all my low-tyramine meals on Sunday and then instantly freeze them for freshness. Even my Naturopath thinks I’m obsessive compulsive about my food and she’s right, but it does work for me and I got used to it. I don’t intend to stay like this forever, but at least until I can get much more recovered.


#30

Can’t win, can you. If it works for you, who’s to knock it. Guess if you are food sensitive you need to be active in yr approach to control/avoidance. Half hearted wouldn’t work. Might be complete waste of time altogether, I was amazed to read medics saying some drugs don’t work because people don’t ‘bother’ to remember to take them regularly. Because of such non-compliance medics try not to prescribe pills you have to take several times a day. This applied to alot of drugs and not necessarily MAVers. I’m amazed. I subscribe to the lady I read somewhere who said she’d wear a chicken on her head if it stopped the dizziness. How hard can it be to swallow a few pills?

Yr low tryamine diet is interesting. I wonder if I’m the same. I’ve been trying it out to some extent and feel it could help. And being much more careful to eat fresh where possible and avoid ‘leftovers’. Avoid a couple of known food triggers completely which helps but alot of mine I’m convinced is the dreaded ‘hormones’ or lack of them and certain light situations a main trigger.


#31

Neither neurologist I saw mentioned diet, not even caffeine restriction. I emailed the migraine specialist neurologist much later after reading alot about diet on the internet specifically to ask. She said no need to restrict at all. In consultant thinking about it she did query my diet and said a well balanced diet was required. That was all. Dr Silver wrote somewhere that one of the main reasons for failure of preventatives to work after dose and time allowance was caffeine consumption which I keep in mind for future.


#32

Jojo

Well that’s interesting. With @napagirl that makes three of us in the same pattern, give or take very little. It’s a genetic predisposition and those dratted hormones to blame. Sorry to hear about your mum developing epilepsy. My mum developed bipolar in her late 30’s after my brother was born. I read there are similarities/possible connections to epilepsy with bipolar. I’ve wondered. I read tons of stuff about treating hormones for MAV but don’t remember any positive outcomes but you have to remember there are probably lots of females out there took HRT for some else and never got a wiff of MAV in the first place so they’d be success stories without ever knowing it!

It’s amazing when people get ‘talking’ the similarities. Pity medical research doesn’t take note of more things. Might help for the future. All that ‘wasted’ info. Knowledge is power as they say. Don’t think doctors even think about causes of many conditions. Just treat symptoms or try to. Not that I’d want it but nobody’s ever suggested a link between my MAV and menopause. In fact it was many years before I thought of it myself. Helen


#33

Helen…i might go for it and try an HRT patch…what have we go to lose!!..ZILCH
Jo x


#34

Haha, yeah, I’ve thought that exact same thing. I am splitting my Verapamil pills into 5 doses through the day and its easy for me, never forgot even one dose and never late.


#35

I’m 3 times daily for over 2 years now. Late maybe 6 times, but like you never forgot or not bothered. If they cant bother, I’d say they cant be that ill. I can understand people afraid to take pills for fear of side effects but just not to bother. Silly.


#36

Yes! My sister who’s 2yrs younger than me (48) has had no migraine issues whatsoever, even with our family genetics for migraine. But she’s also been on birth control pills consistently for around 30yrs! She has never had a hot flash or any other premenopausal symptoms!!