Feeling scared and alone

HI all,

I’m really glad to find this board as it comes the closest to describing my life the last six months. There are several things at play here and I’m not sure what caused how I know feel on a daily basis. I was on Adderall for 2.5 years (it was prescribed for my ADHD), but stopped taking it a year ago because I didn’t like the idea of being on ‘speed’ all the time. Ever since stopping the Adderall, I haven’t felt ‘right’. Granted I have severe panic disorder and the Adderall actually helped a LOT with my anxiety (oddly enough) But my neurologist thinks that is just coincidental since I’m right at the age (30) that migraine problems often start.

But the worst of my symptoms came after I moved from Washington (sea level) to the Denver area of Colorado. I’m wondering if anyone else has issues with altitude or if altitude is a known trigger of MAV?

This is what I’m experiencing:

-Spells where I feel like I’m going to faint. I get this almost electrical hum sensation throughout my body and a fullness/ringing in my ears. My head feels almost detached from the rest of my body. Usually lasts only 10 seconds or so. But very scary and usually sends me into a mother of a panic attack and I’m left feeling very weird/detached the rest of the day.
-Daily light headedness/dizziness, but the following situations make it worse: Riding in a car–more so being a passenger than a driver, being in grocery stores (sunglasses help for some reason), showers (especially if I use hot water), being in rooms with all white walls, vigorous exercise, doing a lot of bending and moving around (like cleaning the house), sitting high up where my feet don’t touch the ground, that time of the month, etc.
-Sometimes it feels like the floor is moving up and down beneath me.
-Frequent pressure or feeling heaviness in my head (without pain)
-Frequent buzzing/tingling in hands and feet. This turns into a full on vibration if I have a panic attack.
-Visual snow
-Increased after images that are very annoying and disorientating. Basically anything I look at with high contrast (a black frame on a white wall, for example) will produce a negative after image that moves with my eyes. I also see trails at night or when I’m tired. I’m very sensitive to bright light reflecting off cars. Sometimes those after images will last for minutes.
-Derealization…I spend way too much time feeling like I’m in a trance or dream.
-Poor sleep
-Fatigue

I have a history of migraines. My grandmother had them. My mom has complicated migraines with aura. I’ve had two classic auras so far (in three years). The second was was followed by the worst headache I’ve ever had. Luckily, an excedrin wiped it out immediately. Headaches really aren’t my biggest problem, though. I get them, obviously, but they tend to be random dull pains that move around my head. They come and go and are usually pretty mild.

I’ve had every blood test imaginable, including auto immune. Everything is normal except I had very low Vit D levels, which have gone way up since I started taking supplements. I’ve also had 3 EKGs and a 24-hour heart monitor. Normal. I had an MRI with and without contrast. Again, normal. Obviously I have psych issues including OCD, ADHD, depression, and panic disorder.

Doctors are kind of at a loss of what to do with me. We’ve tried various anti-depressants–all which sent me into a panic attack and made me unable to sleep. My neurologist thinks the majority of my problems are panic/anxiety, but he did acknowledge that it could be atypical migraine causing them as well. He also said my visual symptoms are most likely a ‘persistent migraine aura’. He has heard of MAV and what not, but he still insists that panic is my biggest problem. I have trouble believing this as I’ve had panic most of my life. I know what it does to me and these symptoms listed above are brand new to me. I’ve never had a history of being motion sensitive or problems with altitude before.

Since I’m so sensitive to most medications, my neurologist wants to try me on vitamins. B2, magnesium, and something called Petadolex. Has this worked for anyone?

Anyway, I spend every day scared out of my mind, fearing that I might faint at any second, feeling like I’m in a dream I can’t wake up from. I guess I just want to talk to someone who actually GETS what I’m going through because being told ‘it’s all in my head’ or ‘its just anxiety’ isn’t helping.

I remember feeling scared and helpless when I was hit with symptoms. I don’t know about altitude per se as a trigger, but I–and I’m far from alone–respond to weather changes. Beyond this, I remember when, years ago, younger, fitter, and without migraine, I spent some months in Boulder at a training session. The thinner air made a big difference to my energy, and correspondingly when I got back to the East Coast and “ground level,” I was full of all kinds of energy for a little while. I have a friend with similar problems, albeit not diagnosed as migraine-related, who has a hell of a time traveling by air, despite the pressurized cabin.

It sounds like MAV to me. I share all the same symptoms, except for me the floor ALWAYS moves up and down when walking (disequilibrium). I am a psychologist and know that panic, anxiety does not present like this. sure, anxiety might not be helping matters, but this is surely not how anxiety presents. It really does sound like MAV.

I think that while anxiety is not the biggest problem, or by any means the only problem, for me it definitley can trigger or exacerbate the migraine symptoms. I am a therapist and I agree with MAVLisa, this is not how anxiety alone presents. I was terrified as well before I found out i had migraine, but since I have done research, I can tell myself why I am dizzy or rocking, and I can tell myself that it will pass in time and I don’t panic. Many of your symptoms sound very familiar to me. I was able to gain some control of this through trigger elimination - diet, sleep, stress reduction, magnesium, vitamin D and 30 mg of nortriptylene a day. I also just had my thyroid retested and had to increase my medicine I had to take for thyroiditis. I would say that I am at 90% now.

I’m sorry you have been going through a hard time. I agree it is very frustrating when no one can truely understand what we are going through. I have similar symptoms that you described. I would def say you have MAV…especially because of your history of migraines. I believe that anxiety and migraines or mav can all be connected. Idk if the same chemicals are involved or what?

Have you ever heard of Depersonalization? It sounds like some of your symptoms are from that. Also, have you ever heard of cognitive behavioral therapy? For some peopole that works really well and maybe you can get some of the anxiety and panic under control with that.

Take Care,
Briana

I could’ve written this myself. I’ve had anxiety/panic for many, many years and all of these symptoms are new to me, but of course the anxiety doesn’t help things. I was actually on an antidepressant when I started developing all these odd MAV symptoms. Now I’m at a complete loss as to what to try next because, like you, my doctor wants me to get the anxiety under control first but the other antidepressants I’ve tried either just make me more tired or make things worse. I totally hear you!!

Well, anxiety certainly doesn’t help. For me it’s a nightmare the whole anxietyproblem I have on top of my rocking. I am very certain after two years of rocking, one of which I’ve felt really good dizzywise and had pretty much a normal life without anxiety, that my dizziness is not itself caused by anxiety. However anxiety makes it much harder to deal with the symptoms and especially if one like me has trouble sleeping from the anxiety + rocking (can handle one at a time but not both) then it can be really troublesome.

Unfortunately my symptoms have kicked up again ever since I took a tbe-vaccine almost 3 weeks ago now + coming home from a vaccation (I most likely have mdds and not mav but I stick around here and read on occassion just because the people here are so darn nice). And slowly but surely the bad thoughts I had two years ago when this whole mess started have returned. The fear of tomorrow, the fear that it’s going to get even worse, that I can’t sleep (big one!), the why did I do it thoughts. That and much more returns, and its a bitch! :smiley:

So yeah, just wanted to say I know what it’s like feeing scared and alone and I truly feel for you, as only a person who knows what it’s like can I think.

Hello,

Just to agree really with what everyone here has said. I don’t think your symptoms are caused by anxiety, but anxiety will exacerbate them. When I first got ill I was terrified about the symptoms themselves. Dizziness can make you feel like you’re in a bubble and cut off, but the combo of dizziness combined with anxiety induced derealization is horrible. That’s what was going on for me initially. I got the anxiety about the symptoms under control with the Hope and Help for your Nerves book which basically outlines some basic CBT techniques. After that the dizziness was easier to deal with.

Don’t be scared of your symptoms - they can’t kill you. To my knowledge altho people talk about feeling like they might faint, I don’t know anyone who actually has.

H

Like the others I can really empathise with your symptom list - it sounds a lot like mine.

"Since I’m so sensitive to most medications, my neurologist wants to try me on vitamins. B2, magnesium, and something called Petadolex. Has this worked for anyone? "

I haven’t done this combo - instead of the Petadolex (Butterbur) I take feverfew along with magnesium and B2. It has absolutely helped with my nausea (stematil is a rarity now but used to be an almost daily requirements even with beta blockers) I suspect that it has helped with other symptoms as well, and in general I feel better in myself (even when symptoms aren’t good if you know what I mean?) but I can’t be sure it’s just the vitamins due to all the other possible interactions (changing diet, increased exercise etc)

hang in there - you’re not alone here!

hi, you are not alone . Your symptoms are also oh so familiar to me .

Hi
If you have problems with the "SSRI’s for panic/anxiety, have you ever tried Neurontin? (or perhaps another mood stabilizer?) Google search it and you will find so many people found it helped their anxiety. I don’t think it hits serotonin, so it may be easier to handle. It doesn’t have the sexual side effects either. The main problem is fatigue, which can be helped by taking it at night, and weight gain.
I personally feel anxiety can manifest in a huge variety of symtoms…my best friend had neck pain, neadaches, jaw pain, panic attacks (that sent her to the hospital) reflux, indigestion etc…after 4 weeks on Paxil it ALL went away. A year later
she got off of it fairly easily and quickly, and now is great. I’m jealous at how easy it was for her!! But just to let people know that not every story is scary when it comes to these meds. I was VERY hesitant to start on them…fought it tooth an nail, but finally gave in.
Best,
Kelley

Hi Everyone,

Sorry I haven’t responded for so long. I’ve moved, so I’ve been offline awhile. Thank you for all these responses! Seeing I’m not the only one with these weird symptoms helps immensely. I feel almost like an alien sometimes, especially when I go to the doctor and try to describe what is happening. To answer some of the questions–no, I’ve never tried behavioral therapy. But I’ll try anything at this point. And I haven’t tried neurontin either–that’s a good suggestion!

I just moved to the Portland area, so I’ll have to find a new set of the usual doctors (neurologist/psych) I found that the altitude in Denver (in part) was making my symptoms worse. I still have some of the same problems here, but less frequently and my anxiety (for whatever reason) is less severe. Although I have read studies that say high altitude will make panic and panic symptoms worse.

Right now I’m going through a bit of a bad phase–usually they are centered at the end of my menstrual cycle. I feel lightheaded, my vision is off (lots of quick flashes of light, smoky vision, snow) and my tinnitus/head fullness is in full swing. I’ve only had a classic migraine aura twice, but they both came at the end of my cycle. Also my most severe symptoms (especially the near fainting spells) are always around this time of the month. So I’m thinking hormones might be my major trigger.

However, I do still feel brain fog/lightheaded crap the majority of the time. Driving, especially, can be very difficult because I literally feel drugged up/drunk–almost like I’m fighting to stay awake and pay attention. It’s a horrible feeling! So I try to stay home on my bad days, which makes it difficult when I have job interviews and errands to run. I don’t know if anyone feels like this…but do you ever just want someone to pinch you and wake you up? It almost feels like something in my brain was shut off and I’m operating at half speed.