Hi everyone, I am new to my symptoms. Just this past December I had a complex migraine that presented much like a stroke. It was after that event that I began having significant continued side effects that are similar to what many of you describe. I have suffered from migraines with aura in the past but never have I had a complex migraine and I certainly have never experienced before what I have been experiencing these past couple of months.
I thought I was going crazy at times! I thought the sensations I feel were in my head or due to anxiety. Over the past months I have been doing a lot of research and have been trying many things to control my symptoms. I have had many emotional breakdowns… because what we experience can be so difficult… and not many people understand.
Thankfully I have a very supportive husband and family and I have a second opinion with a neurologist on Wednesday. I am hopeful that I can gain control of this but I am SO glad to have found this community of people who are experiencing many of the same things that I am going through.
Welcome Liz. This is a good group. A lot of knowledge and varying experiences. Seeing the neurologist was the best thing that happened to me since I’m usually controlling my symptoms and feeling like normal most days.
It’s good to have a support system behind you, it’s very important. Hope you get the help and answers you’re looking for! Be well!
Welcome In. Sounds like you are on the right road. As you are just joining up might I suggest you open up a Personal Diary to record your own story in a concise manner which will help others in the future as you have been helped. Helen
Welcome Liz, many of us have had some strange and scary symptoms. I get slurred speech at times, which when it first happened I also was thinking stroke. Possibly the strangest symptom happens in my throat and upper chest - it feels like everything is numb and heavy there, similar to having the wind knocked out of me - I relax and stay calm and breathe, but honestly it doesn’t do much since I can’t feel anything. Then I get spasms in my throat and I lose my low vocal range. It happens whether I’m anxious or not, so I know it isn’t just anxiety. My theory is that its a vagus nerve thing tied to migraine. Seems pretty rare, I haven’t come across anyone that has it, which is why it was scary. But as I keep following treatments for migraine the symptoms are slowly fading away…
Anyways, welcome again and keep us posted how things are going!
Wow that’s definitely a strange symptom…but it seems like through reading this we all have some unique symptoms and then some that are all pretty consistent. Either way totally scary. Glad you are slowly progressing!
My weird symptom that seems to be unique to me is the burning in my feet caused by any pressure (resting on bed, on barstool etc…) once the pressure is gone the burning sets in. Almost seems like a neuropathy of sorts. Thankfully not as scary as what you’re experiencing! Other than that I get all of the usual stuff, lightheadedness, facial and limb numbness, pressures and pains in head, light, sound, and scent sensitivity… and ugh tinnitus! Thankfully most days I am able to feel mostly normal with the help of propranolol twice/day and topamax once at night.
Knowing that others are finding themselves to slowly feel better over time is encouraging. Thanks for sharing your story.
Thanks Renee, I need to keep in mind that being 100% cured doesn’t need to be my primary ficus but as you said “feeling normal on most days” should be what I strive for. I believe I will get there. I have already noticed improvements. Thank you for the encouragement.
I get basilar/brain stem aura migraines, a type of complex migraine. The first several times are terrifying. I’ve been chronic for years and still have nightmares about it. Though with our brains it’s hard to tell if it’s just a nightmare or if you’re dreaming about the migraine you already have. Landing on a therapist’s couch to deal with the emotional fall out is entirely appropriate. Like you chronic MAV started with a serious complex migraine for me. I’d been episodic for a very long time (20 years) before a basilar migraine that lasted a week landed me on an IV drip in the ER in 2017. I never did fully recover. MAV has been chronic and often disabling ever since. With meds and lifestyle management it does get better. It can seem like an endless odyssey at times with highs and lows but the trend is generally to improve over time. Fortunately you’ve found your tribe. We’re with you for the journey. You are welcome here.
It really is comforting to have an outlet and alike people to talk to. I too have had dreams and a couple of times waking with severe migraine symptoms (facial and arm numbness) that wake me straight out of a nightmare. It’s hard to describe to others the emotional and psychological battles that come with our symptoms because so much of the time we appear “normal” or “fine” on the outside. On the inside it’s like an electrical storm of static electricity and loud noises. I’m glad to have found this group and to know that getting better is possible and likely
Thanks for sharing your story with me
That’s EXACTLY it.The last nightmare scared me in a call your therapist but please don’t tell the DMV sort of way. I’ve occasionally experienced visual aura while driving. The last significant time a scintillating scotoma took the center of my vision but left enough around the edges to get the car pulled over. It wasn’t exactly out of nowhere - I overdid it at the gym - but it came on fast and completely. Generally I’m just looking through visual snow and sometimes psychedelic colors on a 2D, wavy background. But I can still see. That’s common enough for me to know when not to get behind the wheel or when it’s just visual tinnitus, a background issue. I’ve never completely lost vision but the fear is obviously playing in my subconscious. This week I dreamt I was driving down a steep, curvy hill at night, in the rain, in heavy traffic at high speed. It’s a local hill, I live in the rain capital of the US and the speed limit is 60. So all that’s part of my regular routine. In the dream I suddenly lost my vision entirely. I managed not to crash until I hit the curve at the bottom of the hill. I woke up on the second or third flip of the car when I assume the dream car went into the real trees. When I awoke MAV was playing a tattoo on my frontal lobe but the freak out turned it into an actual migraine. The dream was so real. And it’s within the realm of possibility. It’s a sobering thought and one that speaks to the deep psychological impact of living with MAV. Even when you feel decent, it’s always on your mind.
Oh wow that is very scary! You should keep a journal. I have been tracking some of my dreams as my cousin has studied dream analysis and has given me some insight on what I might be subconsciously telling myself. I wonder what someone who studies dreams would tell you about your dreams. Much of it is how you perceive the messages your subconscious is giving you. Good to know you’re working with a therapist because I think it’s necessary in this type of situation. I need to find someone to talk to as well.
I am hopeful for some new insight tomorrow at my Neuro appointment…
I’m glad you found this site because that’s how I felt last Autumn when I stumbled across it. The relief to know that you are not alone and discovering everybody has their own unique symptoms brought about much needed reassurance.
Mine started in the summer of 2018 with mini bouts of BPPV followed two months later by vestibular neuritis. The latter event took several weeks to clear up and then I found myself constantly dizzy with regular dropping sensations of non-rotary vertigo which is particularly bad at night. Add on the constant tinnitus, pins and needles, sound sensitivity, anxiety and many other strange things, I ended up in right state wondering what on earth was wrong with me. Thankfully everyone here has been extremely supportive which is completely the opposite to my GP who blamed the entirety of my problems on health anxiety!
Several specialist appointments later and I have a diagnosis of migraine associated vertigo (fuelled I believe by fluctuating hormones) and PPPD. I’m on 10mg Amitriptyline at night and am currently trialling acupuncture.
I still have a long way to go but I’m not giving up without a fight. The more I learn about my condition, the more confidence I start to gain but it’s always the anxiety that trips me up. An exacerbation of symptoms nearly always has me on edge and you’d think after 15 months I would have learnt to calm myself down. Sadly not…so I look at it as a work in progress.
I sincerely hope your neurology appointment goes well and that you get the insight you deserve. Best of luck.
Thank you for commenting and I definitely know what you mean about the anxiety. Sometimes I feel so in control and sometimes…well… I have full blown panic attacks. Its hard at this point to distinguish if its from anxiety or from pure frustration/anger over everything. I suppose we need to give ourselves credit for the good days though! Most of us have more good days than bad, so that is something to celebrate. It is so hard for many others to understand what we experience as there is SO little awareness to the general public and what we experience is not visible to others. My first neurologist and PCP also blamed most of my symptoms on anxiety…and while I can certainly say that anxiety does play a significant role in this, my symptoms are present with or without anxiety. My anxiety is a result of my symptoms and NOT vice versa.
I hope the acupuncture goes well for you. I am interested in hearing about new alternative therapies rather than medications (although I am thankful for my meds as they do seem to be helping). Did you start a thread on acupuncture? or perhaps there is one that already exists? I have been following the thread on Vestibular stimulation as I am curious to see how that is working for some people.
@LizB6119 The anxiety still troubles me daily and I agree with you - the conditions and its symptoms cause added anxiety and not the other way around. The difficulty I had telling my GP that had to be seen to be believed. I’ve changed to a new GP who doesn’t necessarily claim to know everything about migraine associated vertigo but is, none the less, a lot more helpful and sympathetic. Recent blood tests also showed my hormone levels to be fluctuating (I’m 49) and so I believe peri-menopause is definitely playing a part here. I also believe peri-menopause is causing an increase in anxiety too so it’s a double whammy and perhaps therefore I shouldn’t be surprised with how I’m feeling sometimes. It’s trying to conquer and cope with it better that I’m still learning to do.
As commented, there are threads on the site related to acupuncture which make for very informative reading. Recently, I created a personal diary and I intend to update this once my acupuncture sessions are over (I still have seven left to complete). As things stand, I haven’t noticed any real change in the dizzy/vertigo sensations but I do believe I am making some progress with reduced head pressure and, for me, when that kicks in, everything worsens considerably! I’m also taking herbal remedies for the anxiety but again it’s too soon to comment if they are having an effect.
It’s hard to deal with a hidden condition and even harder to explain how the symptoms affect us personally. A lot of close friends think I have a fear of heights. They are perplexed when I tell them to imagine carrying out their day being on a never ending travellator whilst trying to balance several bricks all squashing and bearing down on your head. Just lately I’ve tried not to be so hard on myself and just go with the flow and take each day as it comes. There are certainly some things I can tolerate better now than several months ago so I’m thankful for that. Also, I am better when I am in motion - either driving or as a passenger in a car, bus etc. Temporarily, the symptoms seem to completely disappear…only to reappear once the motion has stopped.
We have Alfred Hitchcock to thank for that one! Acrophobia is a fear of heights. Not such a catchy title for a film maybe. I must admit I gave up even trying to explain MAV to interested parties long since though these days if I was planning to I think ‘MVBD’ - ‘Migraine Variant Balance Disorder’- is the best description I’ve ever come across so far.
@Onandon03 I definitely agree with you on that description. I was lucky in that I didn’t suffer too much with the actual migraine side of things as an early adult (maybe a couple spread over several years), nor did I suffer with motion sickness. Now, twenty years on, it’s definately the dizzy/vertigo sensations that overwhelm me. Again, I’m extremely fortunate that I’m up and about but it’s crazy how the floor feels sometimes. It can go from feeling normal underneath my feet to completely bouncy or, worse still, like a moving travellator like you find at airports. The past few days have been particularly troublesome to the point I’m clinging onto the work surfaces whilst trying to peel potatoes!! This condition truly is the weirdest thing I’ve ever experienced and ‘migraine variant balance disorder’ certainly sums it up!!