Pep Talk?

Hello All,
I haven’t been on the boards in a long time it just wasn’t helping me move forward. Quick story recap, just hit 6 years this month since it all started. Fainted at the doctors office 6 years ago and after that was constantly dizzy, many doctors and misdiagnosis was almost bed ridden with dizziness and anxiety, tried VRT’s and finally got in to Mass Eye and Ear Institute and got diagnosed with MAV. Started Nortriptyline years ago but I am so med sensitive I have only worked up to 50mg I only up it maybe once a year so I am way overdue. Follow the migraine diet for years too…finally my good days (although I always had some type of symptom) outweighed my bad days, this past year I was able to coach TWO cheerleading squads, write a novel, operate a cake business and be a mom to two kids things were going really well I was so proud and finally happy. I used to faint when I got peircings when I was younger and I was thinking about getting a tattoo so I was worried about fainting so of course I googled it and read up and just frigging reading about it I almost fainted which in turn sent my anxiety red-lining. that was last Thursday and ever since I have been dizzy, light headed (esp when standing up) off balance and panicky also for some reason my knees feel weak when I stand. I know it is normal to have setbacks but this doesn’t seem to be letting up and its been almost a week. I have sobbed for at least an hour straight Im scared and upset and freaked out fainting is my biggest fear and I wondered if anyone that has experience with that that can help me not be so freaked out. I just want to know that this will get better its just a setback and those happen its not abnormal and not never ending…I would appreciate any input its been so long since I was such a panicky mess :frowning:

You poor thing… This is a tough disease sometimes and we all have our ups and downs for sure… Has your dr prescribed anything for the anxiety you feel? Sometimes the " fear" of fainting is worse than anything… If you can take something to calm yourself… Perhaps that will help :wink: also yoga helps… Hang in there…this will pass. I promise. I’ve been dealing with this for many, many years… Talk to your dr and see if he/she will help with your feelings of anxiety…and remember that you are not alone!
Kindest regards…Dee

yeah I used to be on valium but my blood pressure is naturally low so there was a chance it might be lowering it even more so I started therapy and have been managing my anxiety on my own med free for years now and usually I can control it or at the very least identify it and rationalize my panic down but when it comes to the feeling or thought of fainting its totally on its own all bets are off its crazy I thought about cognitive behavioral therapy but omg the thought of triggering faints over and over again AHHHHH lol I am sure that this ‘episode’ was probably brought on when I almost fainted and my panic has been redlined ever since I am trying to relax but it doesn’t appear ready to let go and then of course the panic being so high triggers my dizziness I just haven’t had a long set back like this in a while I think I have a slight cold that has been trying to come on for weeks now and it has been raining so my guess is my MAV flared up due to panic+stress+barometric pressure+slight cold and possible fluid in my ears?? its been a while since I felt this bad so and my symptoms feel a little different but I cant seem to think of anything else it might be, im just so mad cause I felt 90% for so many months and now I have fallen backwards and I hope it is not too long cause I had all these plans and cakes I have scheduled to decorate

I am the same with fainting. Just thinking about having a blood test makes me feel faint and anything to do with blood or injuries or operations makes me all queasy and lightheaded. I am super sensitive about stuff like that. If I am in a lot of pain or when I have had vertigo spins my body goes into shock and I feel faint. Also when I once had acupuncture I almost fainted even though I wasn’t scared of it at all. I think my syncope reaction is triggered easily. It ties in to me having an overly sensitive brain which is probably the same reason I have VM. Having a fainting or near fainting episode doesn’t in itself seem to make my VM worse generally. Once it passes, and it usually does fairly quickly, then I just feel the same as always. Do you think the fainting thing has triggered a relapse for you or were you perhaps feeling a bit worse anyway? My last relapse saw me feeling a bit more dizzy each day until I was really bad with some vertigo spins thrown in for good measure. I guess I may have been more prone to feeling faint then but I don’t think the two were necessarily linked.

Maybe you are having a flare up like you say and are just more susceptible to things at the moment. Do you take any meds for VM? If not, then maybe it’s worth considering taking something. I thought I was doing quite well then for no reason just went worse last summer but that is when I started taking nori and slowly have improved since then. This illness is so unpredictable at times and very frustrating when it hits you for no good reason. I hope you feel better soon x

yeah I have been on nori for a few years I am up to 50mg now stress or panic are HUGE triggers for me and the second I feel faint I panic for days I am afraid to get out of bed how do you get past your fainting episodes? with me they seem to consume my mind

I don’t really link my fainting with VM (even though both may be caused by having a super sensitive brain). I have been prone to fainting at blood or extreme pain or fear since I was a 10 year old child. VM didn’t start until I reached 27 yrs old. When it started I had horrendous panic and anxiety for the first few months. It was uncontrollable shaking, waves of fear, cold sweats, trembling, heart palpitations and fear. It only started to settle when I realised that I was not about to die and did not have a life threatening illness and when I just accepted the panic and let it wash over me. Also I think when my brain adjusted to feeling dizzy 24/7.

My fainting is only triggered by specific things so I don’t really fear it or panic about it. For me, if something makes me feel faint I know exactly what it is even if I can’t control the feeling, so if I started to feel faint I would avoid looking at, reading or exposing myself to it where possible and then it goes away. I have never actually fainted, I just reach the point where it feels like I am about to - that means I go pale/green in the face, feel weak, feel very nauseous, my vision goes fuzzy, I hear ringing in my ears and I have a cold sweat. I have an overwhelming need to lie down to restore oxygen to my brain. After 15 mins or so lying down I am usually fine again. I don’t fear feeling faint, if it happens I just do what I need to do, ie lie down and then it goes. I am not sure if what you are experiencing is more like panic attacks/anxiety symptoms which can be more prolonged and scary…

I have a sort of unrelated question I assume Jem means you are female? Well my 9 year old daughter is prone to fainting and has done so on a few occasions all surrounding fear of pain and blood, she is beginning to approach the age of puberty and we are going to have to have the talk about her monthly and I have no idea how she will get through it and I have been hoping to find a woman prone to fainting at the sight of blood to give me some insight on how to talk to her about it and help her through it if you can give me any advice on that through my email it would be so appreciated her pediatrician wasn’t even sure how I should handle it my email is

Yes I am female and sure I will email you x

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Sometimes, being “prone to fainting” is actually due to an autonomic nervous system overreaction—it isn’t always “psychological” but is actually caused when the body begins to go into shock as a reaction to something that doesn’t cause shock in other people. For some of us, this is a pretty serious reaction. My own heart rate drops to about 11 BPM and my blood pressure bottoms out because of it.

When it is somewhat severe, medication (usually beta blockers which are first line in migraine treatment too) can be very helpful. So too can drinking plenty of fluids and keeping your BP up with a high salt diet and/or salt tablets. If its not severe, you just try not to get into situations that make you faint lol…and you pull together a sense of humor for when you do.

The test for more severe autonomic disruption is called a tilt test…google it and neurocardiogenic syncope for more info…or PM me if you are interested in more info. I was diagnosed in 1994 after several severe and scary unexplained fainting spells. Turns out the problem is related in some way to migraine activity especially of the vestibular type. Yippee skippy–as if the passing out wasn’t fun enough it morphed into this mess!


yeah I have felt faint a number of times and maybe only once lost consciousness I feel faint after every piercing I got except ears with a piercing gun, fainted once at the start of this I was with my sister as she underwent a medical procedure, once about 4 years ago and im not sure what caused that one, standing up too fast low blood sugar etc, then once in the middle of a first aid course then once last Thursday when I was contemplating getting a tattoo and googling fainting so it seems it is mainly stress induced in a medical situation