I have been doing great the last six months with the strict migraine diet plus going slow starting the B2 and magnesium supplements. My husband make reservations for a weekend away and we just got back. Unfortunately, it wasn’t restful at all. It started with the ride to Maine. My husband picked up his new car and off we drove to Maine. The car had that very strong “new car smell” and it was starting to make me sick with a headache and lightheaded feeling. When we got to the hotel we had massages scheduled. I told the masseuse not to massage my head or neck because I am so sensitive and it could trigger a migraine. I was still feeling a little woozy when I was on the table from the car smell but I tried to relax with deep breathing. I was lying supine for about 15 minutes during the massage and she told me to roll over onto my stomach so she could get to my back. As soon as I rolled on my stomach the whole room starting to spin. I quickly turned onto my back and it started to subside. I couldn’t believe I had a vertigo attack on the massage table since It’s suppose to be relaxing! I think between the new car smell and the flickering lights in the massage room along with scented oils might have triggered the attack. It was so depressing and discouraging. I didn’t feel good the whole weekend after that episode. Has anybody else had a problem with massages triggering MAV symptoms or any thoughts on why that happened.
Oh dear. You poor thing. Stay away from massage!!
I’d wager.that’s down to a combination of physical position and physical pressure both increasing head pressure.
Physical head pressure is enemy number one. I used to not be able to bend down, though thankfully that’s eased a lot.
My favourite sister-in-law is trained in massage and says they have to be so very careful and really know what they are doing with balance conditions particularly with relation to the spinal cord. She offered but I’ve always refused. Not difficult as I’ve never fancied massage anyway. I was told by my Mum’s GP to avoid chiropractors like The Plague or anybody doing manipulation. That said, from my own experience of MAV, I’d say your relapse came about because you exposed yourself to too many triggers over a short period of time. Smells - new car and scented oils - on their own would get me. Add in extended car journey - feet off terra firma - then a massage, and, being in a hotel, a different bed (in terms of firmness), deep pile carpets, different lights. Inadvertently you seem to have thrown the whole book at it. I’d have been surprised if that lot cumulatively hadn’t caused a relapse. Your MAV obviously needs a higher tolerance threshold before it can cope with such an onslaught. Trouble is with MAV though you never know you’ve overdone it until it’s too late. That’s the frustrating part. Hope your recovery isn’t too prolonged. Helen
Now I realize what happened after both of your replies. I was feeling good and thought I could tolerate
all the MAV triggers. How foolish was that. Im trying to fit in and not to be a wimp when I am out with friends and family so I go along with the things that I know are going to trigger my symptoms. I started to feel good and went off my diet, stopped wearing my theraspec glasses, exposed myself to chemical smells again, etc. Thank you for helping me realize that I was exposing myself to a boat load of triggers. Never thought about the physical pressure and position thing as a trigger. Massage has never made me feel relaxed ,in fact, I feel worse after they dig into my muscles. I’ll let my husband have the massages and I will wait and read a book or something. I was starting to have a panic attack over the weekend because I was feeling so weird. I am going to baby myself and get back on track again. I just love this support group! Thanks again.
Never thought about it this way before but living with MAV is a bit like crossing the road, before you take your life in your hands, you do really need to ‘Stop, Look and Listen’. Helen
Im putting a sticky note everywhere with STOP, LOOK AND LISTEN. Perfect reminder to stay on track.
Haha, me too @rosjane shame because I love a massage but totally get what your saying! I went to Windermere a few months ago and had a massage at a boutique hotel - indian head massage ( thought it would release tension) I felt away with the fairies whilst having it done… was afterwards when we left and went in thr hot tub, I was so sleepy and disoriented probably the heat from the hot tub, the chemical chlorine all the wax she poured on my head (scented) it sounds terrible but I dont want to be thr girl that needs special treatment. I just want to be normal and do what everyone else does
I know. I can’t even get a facials anymore. The lights in the cosmetic clinics and doctors offices are so bright for me now that it triggers the eye flickering and dizziness. I just went for a beta facial peel and when she was finished I got up slow and sat at the edge of the table for a few seconds before getting off. I then went to bend down to get my purse because it was on the floor and when I got up I was dizzy and had to hold on for several seconds before I felt normal. The brights lights along with head motion are a severe trigger for me now where they were never before. I have to keep my Therapec shades with me at all times now and just put them on wherever there are bright lights to see if that will help. This is making me so nervous.
Oh no! Thats awful, I know that exact feeling. I have HD brows and the table she uses is so flat I dread the feeling when I have to get up as I know it will set my dizziness off
How have you managed today? Any better?
Because im having a flare in symptoms ive been on and off but too much head movement has caused me some motion sickness and fluid feeling asif its going from one ear to the other
I have done some research on massage experiences on this website and it seems that most people found that massages either triggered their symptoms or made them worse.
I have the opposite experience. Massages have helped me to relief the pain in my neck and shoulders and make me feel considerably more relaxed. They did not reduce my dizziness, but I am glad for a less painful neck and shoulders.
I have known my massage therapist for a few years and I am seeing him once every two weeks. He is highly trained and definitely knows what he is doing.
I think massage definitely can be helpful if done by the right therapist. My neck and shoulders are extremely tight and painful and I found a therapist I trust. Some therapists can massage too close and deep near the carotid artery in front of the neck which can become overly sensitive and can cause a drop in blood pressure or heart rate and cause dizziness and fainting. This happened to me when I got off the table a couple of times until I realized what was happening. I got up from the table and had to quickly lie back down as I was dizzy and ready to pass out. I have my new therapist stay away from my neck altogether and just massage my shoulders and back and I don’t have any problems with dizziness and fainting. My neck has always been super sensitive though. I’m glad you are finding relief with your neck and shoulder massages.
What makes you think it’s the carotid artery and not the eustachian tube that’s the issue? These are very close in proximity. What’s the aetiology? I say this because the ET is a critical part of the ear and apparently involved in both hearing and balance.
In my case I’m pretty sure my ET is involved - periodically I get it cracking open or crackling, squishing with jaw movements.
Also the temporary dulled hearing/fullness people get - that smacks to me of an inflamed ET? (but who knows, it is never properly explained by doctors).
I had some muscle manipulation performed on my jaw by my dentist. It was nothing more than a ‘massage’. It got me into almost complete relapse after successfully having reached zero attack status for over 2 years. Luckily after an uncomfortable few weeks (1st one was bad with major BBPV-like spinning attacks) I was back to baseline again.
Artery or tube, I’d stay away from this area of the body wrt to massage!!!
Maybe it depends in what areas are being massaged. I was fine with a physio massaging my neck and shoulders. It freed up my movement. I came out of her room feeling like a new woman able to look left and right without effort even outdoors. Lasted about 36 hours. Once she started on my head a different story altogether. Knew I was in trouble soon as she touched a particular (trigmenial?) nerve. I appeared to be able to feel the entire nerve path particularly through the right side of my face and jaw. Felt queer and could barely walk back to the car and then spent the next 11 days flat out in bed. Never again.
Massages help with stiffness and pain. Trouble is if those symptoms are by products of the condition the relief won’t last. Need to also address the root cause.
I used to think it was head pressure as well, but with me it’s pressure on my airway. When I lay supine on my back, my airway has unbearable pressure on it and I feel like I’m going to suffocate. If I ignore it and power through the feeling, I will end up with a migraine and a tension headache to boot. Last week I had a dental appointment and they had to haul out a pillow lot my head.
As for face down, I can’t do that due to a damaged xyphoid process from open heart surgery. The pain is unbearable.
Another reason massage is out for me is I’m naturally tight in my shoulder and neck area. Everyone that has felt that tightness has felt compelled to fix it and every time it is not only painful, I get a full blown vertigo attack. So no upper body massages for me. I don’t see why anyone enjoys them.
It’s definitely multi factual. Dizziness from massage can be triggered from any area on the neck. For me I know its my carotid artery triggering my symptoms. It was even confirmed by an MD. For you, it could definitely be your ET. And for other people it could be triggered by TMJ massage which is in close proximity to the ear. One time a therapist was massaging near my temples and I got extremely dizzy. Everyone has to be in tune with their own body and if neck massage is causing dizziness and lightheadedness or other symptoms then discontinue them. I finally found a therapist that knows my body well and doesn’t massage deep or cause any symptoms.
I agree. But my thinking is like this: It is not normal for a body to have a very stiff neck and painful shoulders. But if the neck and shoulders stay like that for a long time, then the brain thinks that this is the normal state of being. If I have a massage and it releases the stiff neck and shoulders for a few hours or a few days, then this challenges my brain to what is normal and what is not. My hope is that, over time, my brain gets rewired and considers a relaxed neck and relaxed shoulders as being normal.
I still do all the other things we are discussing on this forum, medication (pizotifen), walking, some form of VRT exercises, good diet, enough sleep etc. But massage is one tool in my “vestibular migraine toolbox”.
I think that this is critical. I would never go to a therapist who has not been recommended to me. Too risky.
Thats what Im hoping for too…that the brain will remember that loose neck and shoulders without tightness and pain is the norm. I made a commitment to see my therapist every other week until I get relief from the tightness and then be able to spread the sessions out further.
Agreed. A tight neck and shoulders/not being able to freely turn your head etc not at all what a person without vestibular or cervical issues would suffer. Not at all. If one is lucky enough to be able to tolerate massage and it helps. Go for it. Once she’d decided to back off the physio I saw actually offered to teach my SO how to massage my neck safely at home but Covid intervened so that never happened. It had helped initially. Felt wonderful for a few hours at least.
You’re dead right. The brain quickly adapts to any ‘new normal’ and according to VRT bods those tight muscles are sending entirely different signals than relaxed ones do. I was told practising VRT exercises against tight muscles was totally counterproductive. As I had no tame physio to hand unfortunately I found it impossible to ever get them relaxed properly. Even when I had symptoms 24/7 I knew that tightness was coming from the brain. Part of the hypersensitivity of the condition. Still the same today. When I’ve no head or ear pressure my neck and shoulders are totally relaxed. A while after any pressure starts up they tighten and that’s how they stay until all the pressure is gone. That’s what I meant by my comment. This link has to some extent now been broken by increased medication. However I’m sure I could go having physiotherapy regularly but it would only work briefly. Presumably because of the ongoing instability of the condition. As long as we have vestibular symptoms the brain forces us to use body parts differently to compensate and I guess the muscle tightness is just an example. The extent to which I can turning my head whilst walking is another direct indication of my current level of hypersensitivity.