I have to say the neck pain is only present when I get migraine, I’ve been for various VRT, chiropractor, physio on my back and neck before but they couldn’t really find anything wrong. I think for me my neck pain comes from the narrowing/spasming blood vessels in the neck which then leads to neurological symptoms. I’m a personal trainer and am familiar with what you’re saying. It’s a good tip!
I do however get it where I am straining my neck and shoulders so much to try and balance my heavy dizzy head (this is usually only relapses now) because generally Amitriptyline has helped me 10 fold. I don’t strain anymore… no migraine not dizziness for the last 18 months. So pleased but now having to ride this out
Have you tried and had any success with supplement as well as the Ami? 18 months is a very good amount of time to be “free” of MAV Asking about the supplements since I’m currently taking 400mg Vitamin B2 together with the Ami, haven’t felt an improvement yet but I understand it takes time.
I’m considering adding some Magnesium also, what do you think? My neuro said that there have been more studies that show the positive effect of B2 than studies on Magnesium, therefore he suggested the B2 first.
As you say 18 months free is good. Excellent medics would say. A 50% reduction is considered success with using migraine preventatives. I went five years from day I first medicated before I had a complete severe-as-pre-meds vestibular attack. My doctors is over the moon with that and I fear lies awake at night dreading I would ask to change the med routine in any way whatsoever. Several others too have been amazed. I was lucky. In the years between I only very few relapses and much ongoing neurological activity but no prolonged attacks. It doesn’t really add up that specialists such as Dr Silver (who incidentally states the two reasons preventatives don’t work are the continued use of (a) caffeine and (b) painkillers) insist people must increase dosage until all symptoms are under control in order to stand any chance of entering ‘remission’ of any length yet doctors keep insisting drugs will never completely stop attacks and considered a 50% reduction across the board (frequency, severity and duration) total success.
Btw wandering off topic but neuro I saw suggested B2 and/or CoenzymeQ10 but totally discounted magnesium. Discussion for a more appropriate thread but I could provide evidence to discount that. Some people do well with magnesium.
It’s funny the different treatment methods depending on country of origin. I would absolutely not recommend Valium as a daily medication, as it is not designed to treat migraines and it’s highly addictive. My neuro gave it to me I believe as a vestibular suppressive method. In an effort to eleviate very acute symptoms and help me sleep - as I was up nauseous all night every night.
It is a drug that obviously is used with caution and for very short periods of time. I would not be advising anyone here to look to it as something to take throughout an entire relapse.
Aus docs are very Valium happy. You can literally just go to the doc and say you have anxiety, and vua-la you have a prescription of Valium. I have not done that though! In fact the hospital also gave it to me with suspected BPPV the first time and sent me home with more! Again - different countries different approaches.
I was on 15mg Ami and .5 klonopin at night and have been FINE but gained weight and my BP was going up. So I stupidly fiddled with my meds thinking I could get off them. Went down to 10mg Ami and .25 klonopin on May 1 and by June 1 was a wreck. I feel like I trashed all my progress. I went up to 20mg Ami on June 1 and am still not back to what I was. Cant travel and actually have nowhere to live at the moment because I can’t travel to get to our little summer cottage and our primary home is rented out! So I am living friend to friend, family to family until the meds kick in. But 15mg Ami doesn’t work anymore and 20mg doesn’t seem to either. Dr. Priesol said to wait 6 weeks and yesterday was that.
SO frustrated. People seem to keep upping the Ami after 2 weeks. Is that when most people think it takes effect?
And FYI, Dr. Priesol says Ami trains the brain to solve the issues with MAV so there is never any problem taking it. Benzos however just treat the symptoms so they don’t help. I just wish I knew why Ami no longer works at a dose it always did. And how many weeks it takes to take effect.
Could be a combination of factors. The sheer stress of you wanting it to ‘hurry up’ owing to your current domestic difficulties, Might actually be an aggravating factor. As indeed might those difficulties themselves which must be causing you immense stress. However others have found both with Ami and other drugs, as time goes by they do need more to achieve the same result. @MNEK18 i think you’ll find is one.
Hi there, sorry to hear of your relapse. Whenever I change my Amitriptiline dose (either up or down), I get relapses that last about 10 days to 2 weeks or so. I have found adjusting the dose by just 5mg is enough to give me a significant relapse until my body adjusts to it. Last time I got a pill cutter and cut the pill in half and took 2.5 mg less and I didn’t notice as much problem.
I just upped it to 30mg of Ami last night and slept so so we’ll. It has made me look forward to bed all day! Maybe going up 10mg at a time is too much but I really want to be able to travel.
The last time I tried VRT, I came in one day with a full blown case of MAV. The floor was rocking, I was dizzy, couldn’t stand the light, etc. everything but a headache. They put a TENS machine on my wrist and 15 minutes later all of my symptoms were gone.
Have you ever used your TENS that way? If so, where do you put the pads? I was so out of it when they hooked me up, that I can’t remember where they put them beyond “on my wrist”.
Hey, sorry about the delayed response.
I’ve actually never placed the Tens machine on my wrist. My VRT therapist said it should be placed in the back of the neck. I usually suffer from neck pain (stabbing pains when moving) as well as other MAV syndromes, so I just place the electrodes where I feel more pain and it helps a lot.
Hi - I did a similar pill cutting method because for some reason i am super sensitive to Amitriptyline. On most doses i would just sleep all day, but that was preferable to the MAV type symptoms I was having. I ended up settling on cutting a 20mg in half and taking 10 mg once per day so i could function. The odd thing is that my sister in law takes a whopping 150 mg per day. I couldn’t believe it, but then again she doesn’t have vestibular problems. I took 10 mg for about a year until i was properly diagnosed with SCDS and then got on more specific medicine for that condition, which can closely mimic MAV.
@shazam did you go back up to .5 Klonopin on June 1st? I am someone that was extremely sensitive to Ami, it would just knock me out like a tranquilizer. I also noticed that when i combined it with other meds things would get out of whack, and my Neurologist would go into “let’s try this” mode. i was taking Ami and Propranolol and increased the dosage on the Pro. This threw me out of whack and i had to lower dosage on Ami and then over a couple weeks go back up until i felt regular again. I would always regulate to the Ami dosage over 2 weeks but that may be because i was only on 20 mg.
I’m on 30mg of Ami now. Seems better. Dr. Rauch said normal MAV dose is 30-50mg. I HAD been doing fine in 15mg. What a knucklehead I am for risking it.
I also started Propanolol 10mg last night because my BP is thru the roof. I have a crazy amount of stress from a monster tenant who just moved in and started tearing walls down in my apartment and then punched my 60-year-old 100-lb architect in the face. Professional Tenant in NYC. Watch the evening news for developments
Haha wow that’s crazy. I like the approach doctors take when they start low and observe before they give larger dosage. I am on a single 80 MG time release dose of Propranolol per day. I found it more effective than taking 2 40MG doses per day. The Pro is definitely helping both my anxiety and BP.
Love Propranolol but cannot sleep well on it. So i am upping my Ami and my klonopin. When I think about how well i was on 15mg of Ami and .25 if klonopin and I’m STILL not better after trying to taper off 2 months ago. What an unpredictable monster this disease is. (Condition.)
Asking about the supplements since I’m currently taking 400mg Vitamin B2 together with the Ami, haven’t felt an improvement yet but I understand it takes time.