Hi! I’m new here. I’ve been reading posts on this site for over a month now and decided to join in on the “fun”
This all started for me back in September of 2018. I noticed I was dizzy in a “drunk” kind of way. It wasn’t too bad at the time but I was also having a lot of daily headaches with random migraines. Things got progressively worse pretty quick. I felt way more functional over the summer but I’ve also struggled with some vitamin deficiencies over the last year too. My doctor is thinking that’s due to taking acid reflux medication and I’m working on getting my deficiencies back up again.
Finally was able to see a neurologist in September and were working on finding a right medication for the “chronic migraines with Migrainous dizziness” that he diagnosed me with. I started with propranolol and now I’m trying nortriptyline.
My symptoms are 24/7 dizziness, feeling “drunk”, tinnitus in both ears, light and sounds sensitivity, weird tingling feeling in my scalp, random zaps in my head, neck pain, right side of my face feels numb sometimes, pins and needles in my legs and hands (this symptom comes and goes), headaches and migraines, the migraines always start on the back right side of my head and I feel like my right leg feels heavy and the right side of my body feels different than my left (I have a hard time describing this one) and a whole lot of anxiety that I’ve developed over the last year. I’m sure there’s more symptoms that I’m forgetting about because things seem random and wax and wane. I also have GERD which has been bad.
Not going to lie, I’m really struggling right now. I’m hoping being able to talk to other people who feel the same way I do will help me feel a bit less alone in all of this.
You are not alone. You’re part of a family now. We understand you. We’re here together.
Welcome Kara, sorry you are suffering! You will find a good community here. Hope you find it useful! Good luck with your protocol.
Hi Kara and welcome. Glad you ‘joined in’. We do need posters to give all the ‘lurkers’ something to read! From your post you seem to be getting a grip on the seemingly strange condition they call MAV which is great. It’s a bit unusual in many respects and some people really struggle with the concept but you seem to be doing really well. Well done. Hope you do well with the Nortriptyline. It’s an old, well established treatment. As I take Propranolol, I’d be interested in know why you didn’t get on with it if you want to share such information.
Like you I too have a GERD diagnosis. It’s not a good combo with MAV because of the necessary trial n error approach with preventatives. The consultant who diagnosed me told me I’m probably allergic to ‘something in pill coatings’ which is worth remembering because should you trial a drug you really want to be able to take if you get an adverse reaction it’s always worth trying the same drug but manufactured by different supplier before you quit it as unsuitable. The main chemical component obviously cannot be different but the filler and coatings/colourings vary manufacturer to manufacturer and it may just be that that gets you. It does me. All the best. Heken
@Onandon03 Honestly, I’m just glad I have a diagnosis where it all makes sense. For the longest time doctors looked at me like I was a bit crazy when I told them my symptoms. I’m grateful for my neurologist who has never looked at me like that. When I was trialing the propranolol I felt more dizzy and my neurologist said to let him know if I felt worse because it could potentially lower my already borderline low blood pressure. But now after reading these forms I’m wondering if I didn’t give it a fair enough chance? I’m not going to completely rule it out if the nortriptyline doesn’t work for me.
Hi Kara, I’m also very new- isn’t it great to come on here and see you aren’t alone or as daft as some people think you sound! It’s certainly made me feel a lot less stressed. I hope your journey to find the right medication is quick.
I must admit I continue to admire your quick grasp of your new situation. Reading all around the subject as you have is such a good way to thoroughly understand it. Good idea to kerp an open mind with the Propranolol although From my own experience I’d say you will possibly do much better with something else because quite often quite high doses of Propranolol are required for effectiveness and if a low dose reduced your blood pressure you probably wouldn’t tolerate a high one.
@Onandon03 Thank you for all the advice! I’m trying my best to do as much reading as I can about this because I so desperately want to feel better. At the moment I’m not that functional. I’ve been to work once since thanksgiving, I can’t get to any grocery store or run any errands. Even a quick stop to a gas station is torture. I’m still going through the “why me” stage of understanding this but I’m also the type where when I come face to face with a challenge I like to say “bring it on”. I don’t give in easily and I’m not going to let this rule my life. I have 2 young sons and they really need their mom back to “normal”. So I’m trying to do anything and everything I can to get back to living life!
Yep, been there. Supermarkets were total torture at one point. We all go through the ‘why me’ stage … it will improve and this will fade!
The supermarket larks, being non functional, not able to work makes you typical MAVer right to the tips of your fingers and toes. The ‘why me’ goes with every long-term condition I imagine. Dare I ask your age or, making it less personal, can I mention perimenopausal as at least a chunk of the answer to that ‘why me’ question. That could be the ‘why now’. For a guess at the ‘why me’ a detailed medical history might reveal at least a good hypothesis.
@turnitaround that’s what I’m hoping for! So far this site has given me more hope than any doctor has. I know I can get better, I just have to figure out what works for me to get better. I’ve had some pretty dark days recently but my kids keep me going. I’m glad I now have people here to help me when I need that extra push to never settle and keep pushing for better days.
@Onandon03 I really started having issues with headaches and migraines after the birth on my youngest son in February 2017. I’m 32 years old. My neurologist said migraine issues can arise with hormone changes, if that sounds right? I have 2 sons and both pregnancies were pretty rough. I had postpartum preeclampsia after my first son born May 2015. And my second son, oof, that pregnancy was ROUGH. Terrible sciatica pain and morning (more like all day) sickness most of the pregnancy.
@Onandon03 I have also noticed that the pins and needles feeling I get in my limbs gets far worse when it’s time for my monthly cycle. And that’s the only time I notice the right side of my face goes a bit numb. I use to as my new warning that my monthly friend is on it’s way haha. I’m assuming it’s because of the hormones?
Well you are a bit young for the perimenopause. From your brief history you fit neatly into the ‘post partum’ basket. Hormone changes have huge influence with this condition by my reckoning. I’m not a medic btw just a fellow traveller on this road but I’d researched the Hormone side far and wide. And curse hormones regularly too. Mine is very very hormone influenced (read my PD) and we have many others on here too. Post partum’s pretty common for start up on both straight classic migraine snd/or MAV. Best positive thing I can say is, failing all else, post partum usually ceases at menopause. Of course with luck preventatives can keep it under control meantime if/when you hit the right one. Do check out ‘Catamenial migraine’ thread too.
Your pins n needles are obviously part of your particular aura pattern. Similarly I get a very numb half index finger, guaranteed new warning. If you can look at it dispassionately really it’s absolutely fascinating being your own guinea pig as it were.
Grocery stores were the worst for me and couldn’t figure out why. But my neurologist did - florescent lights are a trigger for me.
@candiapuppy it must be for me too! I always like to say “outside is better than inside” for me. I can’t stand most indoor lighting. Have you tried any of those migraine glasses? I’ve been looking at some but don’t know yet if they would be beneficial.
I don’t think its that simple actually, not Supermarket Syndrome. For some yes it can be the lights but mostly I think it’s Visual Vertigo ie such as causing an already overwrought brain more worries as you wander down aisles, seemingly identical on both sides, which are packed with goods (no strong focal point) whilst walking against people going in the opposite direction (complex Optic Flow). It’s just too much information for the brain to process. Personally I’ve lived with fluorescent lights more or less since they were invented I’d imagine and they have only ever bothered me when I had Extreme, and I mean extreme photophobia (see my PD) or if they are malfunctioning, ie flickering abnormally. I appreciate they do come with a normal built-in flicker.
You won’t know til you try. There’s loads of threads on photophobia and light sensitivity on here. Follow them through. Tinted lens help some and keep people functioning but obviously they are just a sticking plaster on an open wound.
@Onandon03 that actually makes a lot of sense! There’s a hospital I have to go to for work sometimes and I’ve notice over the last year that walking those long stretches of hallways makes me really dizzy. I told my neurologist that grocery stores and stuff just feels like “sensory overload” for me between the lights, sounds and everything moving.
I’m so thankful for this site. This has all been very scary so knowing that this is “normal” puts me at ease a bit.
Good. I suspect those hospital corridors are very samey with no obvious focal points. Much the same thing will happen when travelling by car say through a narrow lane where there are either picket fences or hedges or indeed anything else identical on both sides which appear in your peripheral vision. Visual vertigo, visual dependence, commonly occur with MAV and migraine generally. Photophobia, which is slightly different, is virtually diagnostic of migraine.
Now you understand this you won’t be too surprised if tinted glasses don’t work as well as expected. They only work on light sensitivity. That said however they can have a positive effect with MAV of a more long term nature because if they do stop light sensitivity they are reducing a major trigger which cannot be bad. Helen
For me, a big problem is visually busy places. Add in bright overhead lighting and background noise and it’s a recipe for a quick decline. Supermarkets are the worst, but I’ve also experienced significant problems in crowded antiques stores, gift shops, etc. where I am surrounded by visual clutter.
It’s interesting to observe myself in those circumstances. I can feel my brain slowing down to a crawl. I can’t think straight, get confused, my movements become stiff, my balance is off, my speech slows, etc. This is usually accompanied by head pressure and neck discomfort. Sometimes my symptoms begin to lift once I leave the offending environment, but other times I’m left with lingering symptoms for the rest of the day, often with extreme fatigue.
When I was being evaluated for vision issues I mentioned to my doctor that I typically feel more stable in my own home. He asked if my home is a calm place. I had to think about it for a minute but agreed that yes, it is. I didn’t intentionally make it that way to minimize my symptoms but I definitely feel better in a calm, quiet environment. Unfortunately we don’t live in a calm, quiet world.