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Introducing Myself


#1

Hi Everyone,

I’m Alice, and I have had MAV for a little over three years now.

It all started shortly after my 21st birthday. Before this, I was pretty much a healthy, normal college student. I was at my boyfriend’s (now husband) apartment one day, which was right next to my apartment, and I sat up quickly after laying down. After a couple minutes, I started to feel kinda funny, but I didn’t think much of it, and since he had an event to go to that afternoon, I went back to my apartment. All of my roommates were gone when I got back. I went into the bathroom, and really started feeling dizzy. I walked out to go back to his apartment for help, but I was literally slamming into the walls, I was so dizzy. I fell onto the floor and reached for the front door handle, but I couldn’t reach it, the room was spinning so fast. I was practically trying to grip onto the carpet, I thought I was going to fall off the earth. I was all alone, and I thought I was dying. It was the most scary experience of my entire life (I’m starting to cry a little now just thinking about it).

Finally I was able to reach the door and I pretty much crawled over to my boyfriend’s apartment. He took me to the ER where they gave me some medicine to calm me down (btw, the ER is where I met my future mother-in-law, who was at campus for his awards event…nice way to meet her, right?). Over the next couple of weeks I would get BPPV even from the slightest head movements. I couldn’t go to class, I had to delay my final exams. The doctors thought I might have had an inner ear infection, so I was put on some medications for that.

After a few weeks, I was feeling alright again for the most part, although I didn’t move my head around quickly. A few months later, though, is when the real daily dizziness started up. I have done many tests, and saw a specialist in Chicago (I used to live near there), who said I had MAV, but this diagnosis was very confusing to me, since I had never had what I thought to be a “traditional” migraine (headache, sound and light sensitivity, etc.). He wanted to put me on topamax, and I only took it once, since I was so scared about the side effects, and I didn’t really believe my diagnosis back then. The doctor never really explained to me what was going on in my head, or suggested a support group or anything. I really wish I had been given a better explanation back then (instead of just being put on a med without telling me what it could do for me), and shown that I am not alone in how I’ve been feeling.

For the past almost three years, I have felt sick pretty much every day. I do not do the physical therapy for my BPPV, but I don’t get up or lay down quickly, and I have been able to pretty much control it that way (I haven’t had the true spinning episode in a long time, thank goodness). I do, however, get the rocking sensation when I am still (for some reason it’s better when I am walking, but worse when I sit, stand still, or lie in bed); it is like I rock back and forth with every heart beat. I often feel like the floor is dropping beneath me, and that my body is very heavy. Everything seems like it is moving or floating. When I get out of a car after long trips, I feel like I am on a boat. I do not like to drive myself. I don’t like being in small or crowded space, and usually feel better outside in open spaces. My body is often in pain because of my lack of movement and exercise. Because my body has to work so hard at being balanced, I am very tired and sleep a lot at night, and I don’t have much energy to do things. Several months after my dizziness began, I was also diagnosed with an overactive thyroid, and have since had my thyroid almost fully killed off with a radioactive iodine pill (I am now on medication to control my hypothyroid). I have developed panic attacks which come out of nowhere (I even get them in my sleep, and woke up with one so bad once that I went to the ER, since my husband wasn’t home at the time to calm me down). I get depressed and very anxious about my health. Because I felt just a little funny before my first major vertigo attack happened, my body often freaks out whenever I feel just a little off, thinking that something horrible like that is going to happen to me again. I used to be active…traveling around the world, smart and driven….but now I feel like it’s so hard to do anything. The only job I’ve held since I finished college 2.5 years ago was a 3 week temp job this spring. I often hate making plans to do anything, because I don’t know how I’ll be feeling. Going out and doing something takes so much energy anyway, that sometimes I don’t feel like it’s worth it. I usually can’t even sit at a table in a restaurant without feeling horrible. Anyone else feel like this?

The only thing that has helped convince me lately that this is indeed MAV, is the fluorescent light sensitivity I have developed (I hate walking into most stores, or office buildings), and reading about other people’s experiences with MAV.

My saving grace through this experience has been my husband. We met only a few months before this started up, and he has stood by me through it all. We got married this January, and I am so thankful that I didn’t feel too bad on our wedding day. Without him in my life, I would probably be in a very dark place by now.

I’ve started the migraine diet this week, to see if it will help in the long run, but I’m a little unsure if it will. It’s very hard for me to pinpoint food triggers too, since I usually don’t have the headaches to go along with them (just the varying degrees of dizziness). Last week I was eating up all the foods in the house that are possible triggers, to get rid of them, and I felt better last week than I have for months, so I’m a bit skeptical. I developed a love for cooking after my vertigo began, since I am stuck inside all the time, and it just seems unfair that this migraine diet is going to take part of that away too!

I have a bunch of questions for you all:

  1. Recently one of my doctors here suggested Zoloft and going to therapy for my panic attacks. Has anyone tried either of these, and have they been helpful at all? I am so wary about going on drugs (I always think I’ll get every side effect), which is why I am trying the migraine diet first.

  2. Does anyone else had MAV without the headaches? I usually only get headaches that are weather-related, and I can sleep them off (thank goodness).

  3. Does anyone know if there is a connection between either MAV and thyroid disease, or MAV and taking the birth control pill? As I said, I developed my thyroid disease around the same time the MAV occurred, but even though my thyroid has been fixed, I still feel dizzy. I also started the birth control pill a couple months before my very first vertigo attack. I went off it once for a little while, but I’ve still been on it for the past couple years (I went on it because I wasn’t getting my period without it). I plan to go off of it after being on the diet for a few months, if I am still not feeling better.

  4. Has anyone else gotten pregnant after their MAV occurred? There are some days when I want to start a family, but on my bad days I worry so much about how sick I’d feel during a pregnancy, and if my body could handle it (or if I could handle raising a child).

Sorry for the length of this post!

Anyway, I look forward to getting to know you all, and hopefully getting better with you all!


#2

I am so glad that you found this site. This site has truly been a godsend. It is amazing how many young people, and many women, have this illness. I got this at 30 - I am 32 now. I can relate to almost everything that you wrote. It seems like MAV sufferers have many symptoms that overlap and then those that differ. For example, I am most dizzy when walking. I feel like I’m on a boat. Whereas, when sitting I feel subtle rocking, but nothing like the extreme boat sensation when ambulating. Congrats on finishing college with this illness. that is a huge accomplishment, and speaks to how strong you are. Luckily, before becoming ill I finished my PhD, but I am unable to work now. Who would ever think this would happen to us? I met my husband prior to all this, but got married when I was ill, and I am very thankful for his support.
If you haven’t already, read Dr. Buchholtz, “Heal your headache” It really explains migraine well. Migraine is not just a headache. Unfortunately, many doctors and even neurologists are not familiar with this diagnosis, which makes it even harder for us to believe it. But as time goes on, I believe it more and more. to answer your questions

  1. Recently one of my doctors here suggested Zoloft and going to therapy for my panic attacks. Has anyone tried either of these, and have they been helpful at all? I am so wary about going on drugs (I always think I’ll get every side effect), which is why I am trying the migraine diet first.

I have been to several docs who work with MAV pts, and some docs said that zoloft doesn’t help, while others highly recommend zoloft. I have written recently about my confusion about this. People have though gotten much better on SSRIs. I am considering taking it myself. I have tried a few meds, only one to a therapeutic dose (verapamil) which didn’t work. unfortunately, it’s a lot of trial and error with meds

  1. Does anyone else had MAV without the headaches? I usually only get headaches that are weather-related, and I can sleep them off (thank goodness).
    Many do not have a headache history. I happen too, but that isn’t always the case.

  2. Does anyone know if there is a connection between either MAV and thyroid disease, or MAV and taking the birth control pill? As I said, I developed my thyroid disease around the same time the MAV occurred, but even though my thyroid has been fixed, I still feel dizzy. I also started the birth control pill a couple months before my very first vertigo attack. I went off it once for a little while, but I’ve still been on it for the past couple years (I went on it because I wasn’t getting my period without it). I plan to go off of it after being on the diet for a few months, if I am still not feeling better.
    I was on BCPs prior to getting ill. After being on BCPs for a number of years I had increased headaches and migraines, and eventually I woke up with this garbage. BCPs can be a migraine trigger. I stopped them but did not get better

  3. Has anyone else gotten pregnant after their MAV occurred? There are some days when I want to start a family, but on my bad days I worry so much about how sick I’d feel during a pregnancy, and if my body could handle it (or if I could handle raising a child).
    I am almost 4 mos pregnant. It was a big decision for me to take on this challenge. I was just so sick of this illness interfering with my life, and many docs told me that 75% of people get better during pregnancy. For me, I have been worse since the day of conception. However, things can go either way - it is really a gamble.


#3

I forgot to mention that I tried the migraine diet for many, many months. I did not see any changes. however, like you said, I am so chronically ill that it is difficult to identify triggers.
Lisa


#4

Thank you for your response! And congrats on your pregnancy! I wish you all the best for a happy and healthy baby. I am sorry that you have been feeling worse with the pregnancy. You are such a strong person to be pregnant with MAV, and such an inspiration. I honestly wonder if I could really handle it, but like you, I am so tired of putting my life on hold. I want to be a mother, and I don’t want MAV to get in the way of that.

College was not an easy task for my last few months of it. My first vertigo attack was right before some finals, which I had to take late. Then I had summer classes, and one more semester to finish. During my last semester, my boyfriend (now husband) had left to start grad school elsewhere, so I was in a long distance relationship, with MAV, and trying to finish my degree. I missed at least two full weeks of classes that semester, and when I did go to class, I took a valium beforehand just to be able to sit through it, and then went back to my apartment and crashed. I pretty much spent my entire last semester in bed, lonely and depressed, with no idea what was going on with me. And instead of starting a career like everyone else, I have been stuck at home ever since.

I did recently read Heal Your Headache, and I really liked it. I am doing my best to reduce my possible triggers, and then if that doesn’t work well enough, I will consider medication. Are you able to be on any medications while pregnant? Part of the reason I don’t want to start a medication right now is because we are thinking of trying to conceive sometime early next year, and I don’t want to start up medication trials only to have to stop them.


#5

I can relate to spending time indoors depressed. I have been pretty much housebound since I became ill a few years ago, and it is terrible. going from being healthy and active to this is terrible. I don’t regret the pregnancy for a sec, but I am not handling it great. I cry all the time, everyday. One thing - after feeling sick and nauseous for 2 yrs, the preg symptoms are nothing. I am not on meds now. I was told that zoloft might be safe, but i’m hesitant to try and the last doc I saw didn’t recommend zoloft for this. I will discuss with ob/gyn at my appt tues. I at least want to see if it would be safe. I think it’s my only option


#6

HELLO!!! PLEASE don’t isolate yourself! I am so glad that you have found this website! I am new hear - but have other diseases so knew immediatly to find a support group. Today or tomorrow not sure when is my actual anniversary of my first vertigo attack. GOD BLESS YOU GIRL! I feel for you!!! :idea:

  1. Recently one of my doctors here suggested Zoloft and going to therapy for my panic attacks. Has anyone tried either of these, and have they been helpful at all? I am so wary about going on drugs (I always think I’ll get every side effect), which is why I am trying the migraine diet first:: I AM ON PROZAC FOR THE DEPRESSION, DEPAKOTE AND VERAPAMIL FOR THE MIGRAINES AND MAGNIESIUM AND CoQ10.

  2. Does anyone else had MAV without the headaches? I usually only get headaches that are weather-related, and I can sleep them off (thank goodness). MY MAV IS ALWAYS WITHOUT HEADACHE. ALWAYS. SO THAT IS WHY I THOUGH IT WAS MENIERES OR SOMETHING ELSE. I HAVE CHRONIC TINNITUS, SOMETIMES VERY LOUD. WEATHER RELATED HEADACHES SUCK, AND MY FACE GETS NUMB ON THE RIGHT SIDE.

  3. Does anyone know if there is a connection between either MAV and thyroid disease, or MAV and taking the birth control pill? As I said, I developed my thyroid disease around the same time the MAV occurred, but even though my thyroid has been fixed, I still feel dizzy. I also started the birth control pill a couple months before my very first vertigo attack. I went off it once for a little while, but I’ve still been on it for the past couple years (I went on it because I wasn’t getting my period without it). I plan to go off of it after being on the diet for a few months, if I am still not feeling better. PLEASE SEE MY ANSWER BELOW ON THIS QUESTION…THEY GO TOGETHER

  4. Has anyone else gotten pregnant after their MAV occurred? There are some days when I want to start a family, but on my bad days I worry so much about how sick I’d feel during a pregnancy, and if my body could handle it (or if I could handle raising a child). MY MAV STARTED 16 DAYS AFTER MY DAUGHTER WAS BORN. I WAS STILL HEALING FROM A C SECTION. I HAVE BEEN THROUGH MANY DOCTORS OVER THE LAST ALMOST 13 MONTHS, I HAVE CONSIDERED FLYING ALL OVER AMERICA FOR A CORRECT DIAGNOSIS. I HAVE DONE EVERYTHING IN MY POWER TO GET BETTER. I HAVE BEEN SICK FOR WEEKS AT A TIME. I HAVE HAD MY MOTHER AND MOTHER IN LAW LIVE OFF AND ON WITH US. BUT IT WAS ALL WORTH EVERY SECOND TO HAVE MY LITTLE BEAUTIFUL RED HEAD - WORTH EVERY SINGLE SECOND! GO FOR IT! :smiley:

:arrow: NEXT ON THIS ISSUE - WE WILL NOT BE HAVING ANY MORE CHILDREN. I HAVE GOTTEN AN IUD - WHICH WILL EVENTULALLY LEAD TO NO PERIOD FOR 5 YEARS (yay!) AND MY PERIODS WERE BRINGING ON AN ATTACK EVEN WITH THE MEDS. FOR GOOD NEWS I HAVE HAD ONLY 2 ATTACKS SINCE I HAVE BEEN ON THE MEDS AND HAVE GOTTEN THE IUD. (THAT IS A 3 MONTH TIME SPAN) I WAS GETTING ATTACKS 2 TO 3 TIMES PER WEEK. SOMETIMES MORE THAN THAT.

PLEASE FEEL FREE TO PM ME I WOULD BE HAPPY TO HELP YOU IN ANY WAY. I AM A POSITIVE THINKER - AND WANT SO BADLY TO BE WELL - AND I HOPE THIS FOR YOU TOO. AS WELL AS CHILDREN!!! (ps MY GIRLFRIEND HAS TERRIBLE MIGRAINES, NOT MAV - AND WHILE PREGNANT HAS NOT HAD 1, NOT EVEN 1 AND HER BABY IS DUE IN 2 WEEKS!!)


#7

Hi Alice,

Sorry to hear of yet another MAV sufferer out there. Don’t know how helpful I can be with your questions but I can certainly relate to your situation, I think we have a lot in common.

I never had a really good go at the migraine diet (no will power) but do know that Coke Zero sends me into a spin. Not Diet Coke, not Coke Light, just Coke Zero. My neurologist also said to avoid red wine and MSG. So I do.

I also don’t generally suffer from migraine related headaches. After a migraine (not MAV) I usually feel “hungover” for the rest of the day, sometimes the next day as well, which can include a bit of a headache but it’s not the biggest problem. With MAV I get most symptoms but still not headache. Go figure.

I’m not doing so great at the moment as I’ve been struck by a stomach virus (sharing a room on holiday with my two little nieces who are projectile vomiting most nights) which triggered a migraine a couple of days ago and now some vertigo. With me I find the worst thing is an upset to the routine, or homeostasis. So, not enough sleep, too much alcohol or a gastro bug can set things off. I think in principle this applies to most MAVers.

Best
Victoria


#8

At the time I started to get ill, my thyroid was overactive. Not enough for treatment. It has gone over a couple of times since and when they want to zap it, I say, leave it alone and it goes back to normal result. I have antibodies to the thyroid (hashimotos) so I assume it swings. I believe hormones play a large part in MAV, thyroid, adrenals, cortisol, oestrogen, progesterone etc. I have a friend doing well on Armour and cortisol. I tried it and couldnt seem to get the balance right.

Christine


#9

Christine,

I have Graves disease, not Hashimotos, but that’s really interesting that we have both had thyroid problems along with our MAV. When my thyroid problems first came on, my resting heart rate was well over 100. I was so warm and shaky too. They told me that doing the radioactive iodine pill, and then taking meds to control my hypothyroid, would be the easiest way to control it and get it stable again. I do notice that when my thyroid is under better control (I’ve had problems with fluctuation, even on medication, unfortunately), I feel better overall, but my MAV symptoms definitely don’t disappear. I might have to talk to my doctor about the connection.

Alice


#10

Alice,

I have a load of other symptoms along with the MAV. Exhaustion after any physical or mental exertion, I get achy muscles and sweating when I get tired. In the end they said I had CFS but I think it was because they couldnt get to the route of it all. I have my thyroid tested regularly but it always shows a normal TSH, I believe it can all be a lot more complicated than that, eg. how much is in the cells, which can be blocked by the antibodies (have you been tested for antibodies). There are many message boards talking about this. You can have a normal TSH but the FT3 and FT4 show abnormal. I am in the UK and the dr. can request the labs to test the TSH the FT3 and FT4, which they have done often for me, but the labs do the TSH first and if it shows normal, wont do the others. I have had the FT3 and FT4 done privately which have shown low on some occasions. I also had the thyroid urine test sent to Belgium which showed low everything. Also just recently had a Reverse T3 done privately which showed top of the range which should mean that I am not converting.
In the USA the TSH test ranges are set lower than in UK as well. Have you read the Thyroid Scandal by Peatfield?

Christine


#11

I haven’t read the thyroid scandal, but it sounds interesting.

I was recently tested for the antibodies, and that came out normal, so no worries there. I take t4-only medicine to control my now hypothyroid, but I know there are combination medicines out there for t3/t4 (although it can be harder to regulate your dosage, I’ve heard). When I get my thyroid tested, it is for both my TSH and t4 levels (but not t3). The range thing for TSH is kind of ridiculous though, since I have been out of range and feel better, or in range and feel tired and hungry and awful. It’s important to find a doctor who will work with your symptoms, not just what the labs show.

I’m just really starting to feel like everything is connected in some way, even though so far the doctors have all treated it as several separate issues. Especially since my thyroid problems started up not far after my first vertigo attack. I’m going to make an appointment with an endocrinologist and see what they say.


#12

Hello all,
I too am new to this site. I saw Dr. Stephen Rausch at Mass Eye and Ear yesterday. He recommended this site. I’m happy to see that people share similar symptoms to mine. I admit I was feeling very frustrated yesterday as Dr. Rausch seemed to be more irritated at me for not being able to be more succinct. I have had nystagmus for some time now which started after a true episode of vertigo some years ago. I have not had any real vertigo since (the drop to the floor kind) although I am generally dizzy off balance and nauseated, I have turned into a real clutz. I have had true migraines in the past but not recently since I stopped eating cheesy sauces. It is a terrible thing to have car sickness when you are the one driving and in fact I blacked out at the wheel and hit 2 parked cars recently, but I don’t remember feeling dizzy that particular morning, just nauseous.
I kind of felt like MAV was a crazy, catch all Dx for “I don’t know what’s wrong with you”. (Here read this book, try this diet and come back if things don’t get better). I had felt so terrible for so long. Yet, as seems all of you have heard, MRi neg. blood work neg. Neuro exam fine. I was sure that I had a brain tumor or MS. To find out that MAV is really kind of non-specific was really disheartening. Although I am absolutely thrilled that I don’t have a tumor or MS, believe me.
I’m hoping to learn from this site that I’m not crazy or a hypochondriac.
It does feel good to know that I’m not alone. I too used to be what I felt was very smart. Top of the class in Nursing school with a mind for figures, and now have trouble remembering words and seem to get confused very easily. Work is getting hard and I am very self conciuos. I too spend most of my time in the house and have lost all of my friends due to being so tired and afraid to go out or make a fool of myself.
I hope I can learn some things here. I feel really bad in the heat, after showering and so far, those are the only triggers I can identify. I haven’t really started to pay attention yet. I also perspire like a mule, extremely uncomfortable and embarrassing. I’m really hoping to get back to my old life.
Do you have any advice for me?
Thanks,
Kelly


#13

Good luck with the endo appt. Let us know what they say.

Christine


#14

Kelly, welcome to out site. Finding Dr. Rauch was lucky for you. Most of us have gone to dr. after dr. only to be misdiagnosed and/or told all the test results are normal. Dr. Rauch, as you will find, is very knowledgeable in MAV. Did he put you on any meds? Did he suggest the Heal Your Headache Book by Dr. Buckholz or The Migraine Brain by Carolyn Berstein? Both are very good. May I ask you age? You seem to suggest that you feel worse when you are hot or that heat my be a trigger. I am 52 and have had this problem for 3 years and it seems to be related to menopause, you will find that hormones play a big part in MAV for alot of woman. I also feel worse when hot or having hot flashed. I also find that when I feel really off balance the back of my neck is “red hot”. I usually put cold clothe or ice on it and it feels better. It also feels to me like the nerves, etc. in my neck are over heating. Please continue to read the posts on this site, it is full of help, suggestions and sympathy for this crappy condition. There are also threads with questions about MAV answered by Dr. Rauch and Dr. Hain both experts in this field.
Hope this site helps you.
Joan

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“Heal Your Headache” “The Migraine Brain”
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#15

Thanks Joan,
Yes I was very lucky to have found Dr. Rausch on the first try. The morning of my accident I was taken to a local ER. I live and work just outside of Boston, MA; a stone’s throw from Mass Eye and Ear. As it turns out the ER doc had also been a patient of Dr. Rausch’s and gave me a referral right away.
To answer your queston, I am 43 years old. I had a hysterectomy ( but still have my ovaries) about 10 years ago, so I really have no way to judge where I would be as far as menopause. My Mom when through menopause at 52. I absolutely hate the thought that because we are women our lives revolve around our menstrual cycles, but I know it’s true.
Dr. Raush recommended both books, but he preferred the “Heal your Headache” and told me to read that one first and of course the diet. No meds yet. He wants me to be as strict with the diet as possible and come back if things don’t get better.
Funny you mention the ice on the back of your neck. I am a nurse at a school for kids with special needs and for the summer school session, my assignment was changed to the first floor where the air conditioning is not so good. I often would work with a face cloth as cold as I could get it on the back of my neck. I guess it helped some, but I would still literally drip with sweat.
One thing my husband and I noticed, after getting a copy of the diet. I have been on vacation for 2 weeks and feeling somewhat better. The foods I would bring to work with me, yogurt everyday, triscuits and cheddar cheese, plums, oranges bananas, granola with peanuts in it and microwaveable soups. Some days I might grab a Snickers, thinking I needed a quick boost of sugar, or a Coke for the sugar, caffeine and to help with the nausea. I haven’t had any of these for the past 2 weeks. Funny, I thought I was eating pretty healthfully, now it looks like I may have been tightening the noose around my neck (pardon the pun). It has been very hot and humid here for weeks now, and the time I’ve been able to spend in the airconditioning has been very helpful too.
Unfortunately, I will be away from my computer for the next week, but look forward to reading more when I get back. Thank you for the post,
Kelly