Hi

Not sure if anyone still reads or posts here but it’s worth posting if I can just unburden myself. I’m 39yrs old, married, mother of 3 girls ages 9yrs, 7yrs and 19mos. My life has turned into a complete hell, even when I thought it couldn’t get worse, it has.

Let me clarify, I have been diagnosed with migraines from years ago after a trip to the ER because of an, unbeknownst to me then, visual disturbance/aura. At that time, I’d been suffering painful headaches but never thought they were migraines until the aura showed up. I couldn’t use any of the meds because of mitral valve prolapse, so I suffered.

During that time, I was also suffering secret panic attacks…secret because I didn’t know what they were and was afraid to tell anyone I was having bizarre symptoms happen…especially while shopping (have had to leave full carts in the middles of aisles to escape). But after the birth of my first child, I started to tell my husband about what was going on. He, of course, is a cynic and just felt that it was something I could just control. I became sad and depressed and pretty much housebound…finding far out of the way, small, hole in the wall stores to do my shopping because they were small and I never battled lines (which seems to be a culprit for my panic) even though I spent a fortune on 2.00 cans of vegies that I could have gotten from a bigger store for .75. Ho hum! But I did what I had to do to keep functioning. The panic became GAD (diagnosed) and the panic attacks became closer together, overpowering me even in my own safe haven of home. I became full fledged agoraphobic. Hubby then had to take over all the duties of shopping and errands. I could, on occassion visit a convenient store but only after I’d done my full body scan and felt “good enough” to go but I always had a plan for the panic. I would never pull my money out or my debit card until I absolutely had to pay for the item(s) so that way if I felt the panic creep up, I could say “Oh, I’m sorry…left my money in the car”, leave the store and come back a few minutes with a semi calm state. What a mess right?

On top of the miserable panic and anxiety, I began to have brief dizzy spells. Diagnosed with an otitis media (ear infection) given antibiotics and ear drops and to this day, I don’t think either of those worked because I still have the dizzies. Worse though.

After the birth of my 2nd daughter, I began to work on my anxiety. Started reading self help books and the Bible and using prayer and some skills I’d learned from the books…I ventured out into public :::shudder::: I started by going into the big grocery store and buying 1 item…of course, they have self checkout lines so I could do it because I wasn’t faced with a cashier that may see my embarrassment if I start to fidget and sweat and panic. Then after I mastered buying one item…I moved on to two and then 3 and by the time I was up to buying 4 items…I spent about 2hrs in the grocery store. YES…2 hours. Going aisle by aisle, fascinating myself with all the new and improved items that I didn’t even know existed. Staring at people who looked miserable because they had to grocery shop and all I wanted to do was to shout at the rooftop was “DO YOU REALIZE HOW LUCKY YOU ARE THAT YOU CAN SHOP???” but I contained myself. I’ll never forget that day…I actually went through a real line with a real person and everything. I was so amazed that I called friends and family when I got home and shared my glee. Of course, they were probably all rolling their eyes at me because really, if you’ve never suffered this horrid monster, you truly can’t sympathize. So, eye rolling or not…I was thrilled. From that day on, I could pretty much do and go anywhere. I still had issues with some places and things…but for the most part, I could be a real functioning citizen of my country and not some recluse trapped in a self-imposed prison.

So for about 5 yrs I had mastered my monster. Then I got pregnant with child #3 and I went right back to the starting line. Partially because when I’m pregnant, I’m not a happy, cheerful pregnant woman. I’m scared and worried and anxious…mostly because I’ve lost 5 pregnancies so pregnancy and I do not get along. So anyway, here I sit…dizzy, anxious, panicky and housebound. Worse than before. Most days I can’t stumble out to my mailbox which is all but 10 steps from my front door.

Herein lies my self diagnosis. Remember my first aura…the one that send me to the ER? I didn’t have those again for years…but within the past 3-4 years (except when pregnant) I get the aura…but now it’s without the head pain or more sophistically called optic migraine, ocular migraine, acephalgic migraine. I do not have medical insurance right now do to a layoff of my husband’s job.

I also have the aura with headpain that may not start right away but rather a day or two after the initial aura. I used to think that aura was bad but now it’s nothing compared to the neurological stuff going on. I suffer some tingling, numbness, mood problems and VERTIGO. Not just a little dizzy here and there…but swaying, sometimes brief whirling and visual disturbances unlike the traditional sparkling C that starts as a hole in my vision and then moves slowly, in 20mins or so, out of my focal view. I’ve had and I’m sorry to have to go here, but sperm-like swimmers…in the sharpest, brightest, almost blinding color of white I’ve ever seen…almost a silver white. I get a weird eye thing that is sudden and very brief, but it almost feels like I go cross eyed, although my family has assured me that my eyes look normal…and it’s also almost like only one eye is turned in. To be honest, I could probably describe it better if it didn’t through me into a severe panic attack where I run for cover…to escape what, I am not sure. It also could be described like my glasses are all of a sudden not turned correctly…like one lense is further away from my eye than the other. Like I said, only lasts a minute…give or take a few seconds.

The dizziness is the most troublesome…this is the thing that keeps me housebound because I’m afraid it will happen in public and I don’t want anyone to see me having it. Strange, I know.

I have been trying to keep a diary but I’m such an unorganized procrastinator that believes she will remember things to write in the diary later…which usually ends up leaving me a blank page because of a blank mind. BUT, in the entries I have put down, I see a correlation with these weird symptoms, dizziness and my migraine auras. I wonder if I’m suffering the migrainous vertigo. It seems to linger between the auras and the headaches (when I do get the pain).

I also have this weird thing that happens to me and I would love to know if anyone else has this…but I get this weird hard to describe, but I’ll try anyway, episode that I’m wondering could be part of an aura. I can just be sitting or standing, really doesn’t matter and all of a sudden I feel like I loose balance…not spinning but rather a pushed sensation. I have to hold on to something to steady myself or I have to walk or run (I think my fight or flight response) away to somewhere (I’m not sure where)…but I feel like I have lean down when i’m walking or running away…almost like if you were trying to avoid something over you…I don’t know. But if I’m sitting…I can’t get up. It’s like I’m thrown back or to the side by an invisible force. It only last a few seconds to maybe a minute but then I have this lingering sense of things not being normal. It’s very strange and extremely hard to explain but I think if any of you had this, you would know what I mean.

OK, PHEW, that was long, sorry. And I’m sure there’s a lot I’ve left out but it will come later. I look forward to reading about your experiences and to assure myself that I’m not dying, that i’m not losing my mind and that maybe just maybe I’ll find some renewed faith that I can leave my house. Oh and that brings up something else…for any of you that get the vertigo or off balance feelings OR the episodic thing I just tried to explain, how do you deal with it in public? I think I have a social phobia that makes me feel like I’ll embarrass myself and one of my worst fears is that someone will help me. Weird, but true. I don’t need help during these attacks, I need to be ignored…I know, again very weird.

Thanks for listening (if you got through the whole post)
Andrea

I have MAV and positional vertigo, and I have the “being pushed” sensation a lot. It is usually when I am recovering from an acute vertigo attack and start trying to move around again. Also, when I am starting to move around, I usually find myself mostly looking down. If I look up or look in a different direction from where I am moving, the room will move on me. So, perhaps that is why you find yourself hunched.

Sorry for everything you are going through.

Hi Andrea

Your story is a familiar one, and there definitely appears to be a strong correlation between anxiety disorders and migraine.

You may find that if you are able to successfully treat migraine with preventative medications, it may also eliminate or substantially improve the anxiety symptoms. There is a huge raft of preventative meds out there, many of which are very effective, that can stop it in its tracks. I would also strongly recommend the book Heal Your Headache by Bucholz. Certainly everything you have described in terms of symptoms can be related to migraine. I would suggest seeing a neurotologist first for confirmation of your suspicions… although there is certainly not much, if anything else that could cause your symptoms. They should then be able to refer you to someone (or handle it themselves) that can aggressively undertake migraine preventative treatment and get you back on track.

Where you’re at now must feel awful, but remember it can change overnight… if you get the right advice and treatment… which has been hard to get until now… but is getting better and better.

Adam

to you both for your reassuring responses. I hope to post here more…although I’ve been throwing myself into reading all of the posts and articles here. What an abundance of information and so helpful to me. I need this community very much, I feel so alone in this and I’m glad I’ve found it.

And I do think that if I could get the migraine syndrome symptoms under control, my anxiety and panic would dimishish greatly…I pray for that day. BUT without medical insurance, there’s no chance of being able to afford a neurologist right now. I’m hoping that perhaps right now I could manage them using a homeopathic/natural way…although I believe what I really need is a really good medication. :slight_smile:

Thanks again,
Andrea

Hi Andrea

I found it difficult to read your story as it was all too familiar from my own past experience of: coping, managing and recovering from the migraine-vertigo - of thinking I was going crazy when nobody diagnosed me correctly for so long. I can relate to nearly all that you write, the supermarket, leaving things till last minute at the till, of going to small shops, panics in shops - oh yuk it is awful and you cannot describe not only the panic, but just how physically ill your head feels.

I had some people and family around me in those early days who just did not want to understand, and in fact were quite unkind at times. It was not helpful. But in my 20s as I got over the agoraphobia I decided to put myself first more. Now, I have a supportive husband and I have distanced myself from those who did not want to understand. Now I take the view that I am a bit 'imperfect ’ physically with the problems that I have - but this is how I am, and it is part of me like it or not, and those around me have to tolerate it, even if they don’t like or accept it. After all I have to live with it day to day.

I have come a long way since then - this is in a period of almost 20 years though - but to get over the serious agoraphobia took help and just a couple of years to get my confidence back, to get my life back. I still get the odd day when I feel scared when I go out - but I stick it out, deep breathe and it’s mostly when I have that pressure in my head, or with migraine. I do feel under par quite a lot at times - but in bouts through the year - but I try to feel better and see them as setbacks that I will recover from.

The neurological symptoms you describe: feeling crosseyed - yes that is very familiar to me, in fact I have had double vision on occasions, numbness, paralysis, speech problems, the cinemaphotographic shot sequences and fireworks display of green and blues, to the blind spots and zig zags of hell! The pulling you mention - that is the classic sign I get often at the start of a short vertigo spell or during, as Allison says, the recovery after a longer spell of rotational spin. It is nasty - but standing still, getting your breathing back does seem to steady it - then it is just a matter of keeping your head straight and not looking around too much for a time.

So Andrea, you are very much amongst friends on here - and not alone in your migraine/vertigo/agoraphobia. When you do start to panic just try to breath deep slow breaths, if you are at home it is really helpful to do this into a medium sized paper bag - it is amazing how calm you feel after breathing into a paper bag for a minute or two. Remind yourself that in most cases people don’t even notice that you are having a panic attack unless you indicate to them that you are - don’t be ashamed of having them either, they are very common. Maybe you need to set up your action plan of what to do when you get one: it could be that you excuse yourself and find a quiet space for 5 or 10 minutes - and see if you feel better.

Maybe take a long handled brolly with you when you leave the house - try and transfer any feelings of unsteadiness onto it - it will become a safety blanket and useful for support if you feel giddy.

Most of all you perhaps you need to just set yourself very small goals to achieve each day, write a goal for each day of the week, for a week at a time, building up in distance, or what you feel is more stressful as the weeks go by - try and push yourself once you set them - but don’t beat yourself up if it goes wrong - just try again the next day. Don’t let agoraphobia beat you - you can and will be in control of your life again.

Perhaps you could try the feverfew tablets for the migraine at least until you get another medical plan? I have been on them for nearly 8 weeks now and I really have felt a lot better than I have for months (far fewer migraines, and much shorter ones). It’s worth a try - but I realise they do not work for everyone.

Good luck Andrea -

Dear andrea .
it’s no wonder so many of us including myself have been ridden with anxiety the things we go through on a day to day basis, it’s natural we become stricken with pannic. yes i get alot of what you saying, my problems arnt pannic attack anymore, some where along the way they deminished, maybe due to the fact that i aviod situations as much as possible , which in turn creates the whole agoraphobic thing.
ive had to work infront of the public for 13 years with the kind of rocking bobbing youre talking about. i’m a singer and i started out with the first year of wobbling having pannic attacks every night through fear of the unknown, some times i look like a drunk , but hey the public already thinks muso’s are trasheads anyway. he he!
ive had no diagnosis, and have felt so very alone at times.
it’s easy to be embarrassed and blame ourselves through anger , saying why arnt i normal like every one else. try not to beat yourself up, youve done the best you can under the circumstances. your so very brave and you will get there again.
I hope you dont mind me saying that if you need to get help from meds, there’s are meds that can help, throughout the year’s ive tried prothioden it didnt get rid of the dizzy but did helped with anxiety and lessens the rocking, it may be worth trying something if you havent already. if you feel at whits end. i do know how you feel , and i’m so sorry you feel so bad at the moment.
you know i cant go anywhere near a fluro light ever oh i’m totaly out of it, and i think at times this contributes to most mav sufferers agoraphobia to a huge degree, i know it dose mine. the thought of going to a shop makes me want to cry,my hbby ose our shopping most of the time and like you it makes me mad, i too just want my old life back before all the rocking.
anyway take care and feel free to vent anytime.
cheers jen