Some background: Just like some of you, there are things that I just can’t do without triggering an episode that might last few days or more. Such as, playing piano for more than 5 mins, or wathing TV for more than 2 mins. Listen to radio for more than 1/2 hour. I have many triggers.
I have been taking clonazepam night time, for sleep and anxiety.
Once Clonazepam kicks in, my symptoms usually drop. So if I am very dizzy during the day, the difference is pretty noticeable. I also seems obvious that these triggers become less severe. That is, 1/2 in my radio listening, for example, and I still do not feel symptoms creeping up.
But I never pushed it, because in my mind Benzos might just be hiding the symptoms, and that what I am doing is going to backfire badly next day (if I continue say listening to radio for longer than usual)…
Who knows? How could we work it out? It’s only a hypothesis that the preventatives work by raising tolerance thresholds. I don’t think anybody’s actually proved it. I don’t think anybody even the medics know HOW they work. There are theories some drugs actually make chemical changes in the brain. Some many people think just mask symptoms whilst yr brain has a chance to sort itself out.
I haven’t had to take benzos for MAV, yet anyway. I take betablockers and from exp it seems the meds are gradually increasing my tolerance to triggers whereby reducing symptoms and attacks. Suits me quite nicely that does. Thank you pills. Pls keep up the good work. However I take them every day to keep a constant level in my bloodstream. Wouldn’t imagine one off’s would do much long-term. Maybe they work by ‘just masking’ the symptoms. Great! The symptoms are horrid, as you well know, so that’s not a bad thing IMO. Anything that makes you feel a bit better so you can LIVE rather than exist is great by me. However benzos are very addictive and certainly not encouraged in UK. I’ve never been offered them for MAV.
Sounds like yr benzos help you relax/sleep. Two Valium will knock me off my legs like anaesthetic for 10 hours. Bit excessive relaxation there. Suppose if MAV makes you anxious which is understandable they relax you and as anxiety will always make symptoms worse, remove the anxiety for a while and you feel better for a while.
I don’t know the exact mechanism, but in my experience both benzos and alcohol decrease the effect of the dizziness, similar to what you mention above. My personal theory is that they both literally numb your brain. MAV/Migraine is like a storm in your brain causing all sorts of dizziness and other symptoms, and the benzos work to quiet these symptoms for a short period
Unfortunately they’re not a long term solution. My neuro compares them to a band aid on a bullet wound, they make you feel better but don’t actually fix the underlying problem. Long-term use can actually make you worse as the numbing effect on the brain doesn’t allow your brain to adjust properly to the dizziness and sensory overload
so when you take the benzos you continue to make sure to avoid the triggers?
Benzos are a central vestibular supressant and hence mask the symptoms. Also the tranquilizing action of the benzos squelch anxiety. It is a quick fix for acute episodes and works consistently better than triptans. Save it for the worst MAV days. I tend to carry them and never use them. I like that they are there when shit hits the fan.
@bachissimo I was prescribed Xanax (Alprazolam), a short lasting benzo, for the dizziness. It worked wonders for me awhile, I took 0.5 mg 2x/day (started at once a day for awhile), so a relatively small dose, and it allowed me to keep working when I absolutely couldn’t stop working because my husband was still in school and then took awhile to find a full time job after he graduated. But it is as others have mentioned above, a temporary band-aid, no fix. I did do vestibular rehab therapy before I was started on the Xanax and didn’t fully recover so at that point in my treatment something was still causing issues (now I know it was migraines not being under control). But now I fear the Xanax is preventing my brain from compensating, in addition to the fact that my migraines aren’t under control (I’m having trouble tolerating preventatives, a long story not for this thread). And, since I’ve been on Xanax for 5 years, trying to taper off of them while being housebound and barely able to walk proved to be too difficult. I tried tapering 2.5 years ago, and the former doctor did have me taper too fast, but it was a miserable disaster and resulted in giving me major medication anxiety. And, now I’m back on the original 0.5 mg 2x/day and the Xanax doesn’t have the same benefit that it did for me before I tried to taper. I don’t want to take more as I know it’s messing with compensation.
So, it depends on what you need in your life. My doctors didn’t expect me to have this much trouble tapering off of such a small dose, but I’ve become super sensitive to everything. If you need a band-aid, benzos can be great. If you can afford not to use them every day, I recommend what others above suggested and just take them in the worst cases as a back up. Benzos (some but not all) work as a vestibular suppressant, so yes they, so far, are the only things that have helped my symptoms. Right now I get relief from some doses but not every dose, and it’s much shorter of a relief than it used to be, but it gets me through the day. Overall I don’t recommend being on them long term. Clonazepam is longer lasting than Xanax at least so it shouldn’t be quite as difficult for you to taper from it, depending on how long you’ve been on it and the dosage. Hope this helps!
Oh, and I actually feel that being on Xanax long term has made my anxiety worse. And several close relatives around me have observed the same thing about me. I don’t know if it’s inter-dosing withdraw that’s doing it or the fact that I should be taking more to get the same effect and am not taking more.
I used to take Xanax, but was switched to klonopin. This was because xanax has such a short half life and causes nasty rebound anxiety (and stops working after awhile). All the benzos are controversial for addiction reasons. But I’ve taken Klonopin low dose (0.25mg) now for 18yrs. I take it most but not all days. I will increase the dose (with Dr approval) to 0.5mg -0.75mg on my very worst dizzy days that I have to go to work. I can say that it has helped me to remain functional. And I do not think it has done anything negative regarding “compensation” as I get completely normal- no dizziness at all, no avoidance of stores, busy environments- between attacks.
Ahhh i dream of your last sentence every night…but still wake up the same…good for you
Jo- completely normal with regard to dizziness. I still have a baseline tinnitus all the time. And it can start increasing and fluctuating. That is usually a bad sign of dizzies to come, but not always.
When I say “attacks” I really mean attack periods. My dizzies typically last a few months, and gradually abate. Then I’m good for extended periods of time. I was good for 3yrs before the last relapse. I also have fibromyalgia and that flares every winter… If it lasts a long time (in my neck/shoulders), it can flare my migraine and vertigo activity.
I think the avoidance of the known triggers is next important to the meds until the dizziness subsides. Exposure to supermarkets, computers or whatever is like the red rag to a bull syndrome. Just winds it uo time and time again.
Correct Helen…its like picking at a scab that never heals…im going to have to change my daily routines massively…easier said than done though.
And im still struggling with the Nort…dizzier and stomach pain/ upset and i take reflux meds with them…gone down to 5mg.
Last day at work tomorrow then 11 days off😎
Yeah…my neck has always been a problem since this all began along with daily chronic headache ( no migraine) but i had 31 Botox injections via NHS 6 weeks ago and its helped massively with these 2 issues. Done zero so far though for the dizziness.
Please you doing so well…its great.
Good analogy that. Like lots of things about MAV itself easier said than done I appreciate.
Sorry to hear about the Nori. My Mum took Ami for mental issues on/off for years in huge doses, No probs but then she wasn’t a migraineur. Trouble is they are good for MAV. Have you tried asking for Nori made by different manufacturer. Sometimes that works if drugs are causing digestive probs. Different firms have different coatings. Hv good break from routine. Helen
I wont cave in Helen…i will keep taking them because i know how much they can help with MAV. Im useless with meds☹
@napagirl Glad to hear you’ve had success with klonopin. Is that the only medication you take for MAV right now? I’m also amazed that you can skip a day of it and not feel any withdraw. The doctor who put me on Xanax had me switch to Klonopin for awhile, but he managed it wrong by saying it would work “the same” as Xanax. Well, it didn’t work the same for me and didn’t help my dizziness at all. He should have told me that it took longer to work too, as back then I blindly trusted doctors and didn’t research meds (I was 24 when this all started so probably started the Xanax when I was 26). So I switched back to Xanax which helped me for awhile.
Thank you all for your responses.
Is that normal thing for MAV? I thought the cycles are much shorter. Good and bad weeks. I know I am new here and still confused about my diagnosis (not clear to Drs). When you say dizzies can you please tell me what are these symptoms? Dizziness mostly? Do you have vertigo. I do not. I also have good and bad months re-dizziness and nausea, headaches. But it’s not out of the blue, depends on what I do of course, how much time I expose myself to triggers.
How do you guys manage to work in that case? This is to those of you who have a sensitivity to screens. I have that, and I have been out of work for almost 2 years! I will soon be pushed out on disability, assuming I can win the case for disability, otherwise will be without income. Do some MAV people end up on disability? Does SS recognize MAV? I assume it must be very hard process, next to impossible?
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.
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.
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
Forgive if I missed it, but are you taking a preventative med? I dont think I would’ve improved without one (not Klonopin).