I'm new here, and relieved to have found this!

Hello to all forum members,
Boy am I GLAD to have found you all. It’s a relief to know I’m not alone, and more importantly, that I’m not crazy. Been having chronic headaches on and off since about 22-23 years old. At the time, had a million dollar neurological workup and even had sinus surgery (the surgeon later told me I was anxious and it was all in my head). They thought it could be “pseudotumor cerebri”, had a spinal tap and even was on Diamox for a while. Looking back, I had a young and aggressive, though nice, neurologist, and I think he was “looking” for a diagnosis where there wasn’t one. And maybe I was too?

In June (this year, 2009) I was 40 weeks pregnant and in early labor, so I went to my doctor’s office to be examined, to see if I needed to proceed to the hospital for delivery. When I sat back up from being examined, which I’d done how many times in my pregnancy…?..I developed a SEVERE rotational vertigo. First time I had ever experienced this in my life. I couldn’t move, turn, sit up, it took me 1 and a half hours to even be able to make it to a wheelchair so they could wheel me to the connected hospital, to triage. When I got there, my doctor decided to just induce my labor and deliver my baby, they didn’t know what the heck was wrong with me.

Needless to say it was a tough labor, with the vertigo, I felt horrible, but they had induced me aggressively and I delivered a healthy baby in 8 hours. The rotational vertigo subsided slowly, it did feel positional somewhat (when I would turn to the right, it seemed, but I’m not 100% sure). I was left with a profound dizziness. I felt terrible. I’m sure it was everything all mixed together…the epidural, the delivery, the hormonal changes, combined with the vertigo. I’m a nurse so of course I thought of the worst…but when my vital signs were all normal, my bloodwork also ok, the resident doctor sent me home. I prayed things would get better with a little rest.

Well all I can say is…since the birth and that acute episode of vertigo, I have never felt the same. My primary doc said well, maybe it’s from the epidural, it will subside, and gave me motrin. The headaches and weird heavy feeling when I walked persisted, also a big loss of appetite. When my son was 3 months old, it was about time for me to return to my hospital job. That week, the floor began to feel like it was bouncing when I walked. Also began to notice a swaying motion while not moving, was getting carsick more easily, had to be careful turning my head to the extreme left, and so on… I JUST DON’T FEEL RIGHT…and it’s hard to explain these things to people!!!

Saw an ENT and for the first time he suggested Migraine Associated Vertigo…put me on nortriptyline 10mg, but don’t feel any better. 6 weeks in I stopped taking it due to a horrible hair loss and not feeling any improvement. Now I know the hair loss is normal 4 months postpartum, and I think I will start taking the nortrip again, and follow up with the ENT. He knew a lot about migraine. Maybe the dose needs to be increased.

Also contemplating the anti-migraine diet…which he brought up at the appointment. But the truth is between MAV, work, the house, and my son…the thought of ONE MORE THING is almost too much…

My symptoms now, from what I can tell: headaches off and on, sometimes painful ones—feeling like the floor is bouncing—sensation of swaying when I know I am not moving—especially weird in the shower, closing my eyes to lather my face, feel like I am moving when I know I’m not—a weird heavy feeling at times, when I stand up…not like I am going to pass out, just a weird draining feeling, and it goes away if I take a couple deep breaths and “snap out of it”—easily carsick, it’s better if I drive—worse symptoms when I am fatigued.

I hope we can all feel better. This is a to deal with on top of our busy lives…and people often think we’re crazy, anxious, or lazy. My husband is a nice, kind man…but he doesn’t get it. I don’t want to hear about the house chores some days…I’m not lazy…but some days I just want to lie down and rest… So I can work 40 hours a week (which I have to right now). And be able to take care of my son when I’m not working.

Any feedback from other member would be appreciated. Sorry about the ramble but I had to get it out! Thanks for reading…

Your friend,
Janel

All of those symptoms you have described, I have pretty much every last one of them. I also started with positional vertigo, a full blown attack where I was literally banging into the walls and fell on the floor, the room was spinning so fast. I had positional vertigo for a couple of months before my MAV started (I still have the positional vertigo to some degree now, although its mostly well controlled). I have had MAV for about 3 years now, which I’ve personally come to believe is partially triggered by my thyroid issues, which started at the same time.

I would suggest reading the book Heal Your Headache. It recommends going on the migraine diet before going on preventative medications. I have been following the diet for a few months now, and I think I do feel a little better when I follow it closely. Far from 100%, but a little better. I’d give it a shot if you can, it’s not so hard once you get used to it. I think it also helps to make sure I get enough sleep and eat consistently. I always feel worse when I’m tired or really hungry.

There are doctors out there who deal with dizziness specifically, and they might be better than other doctors at getting you on the right medication.

Thanks for sharing your story, this site is so helpful and everyone is here for you. I wish you all the best!

Janel - firstly, you are such a strong lady to be working and caring for a newborn with such symptoms. I’m so glad you found this forum. One doc had told me that if you can relate to other’s experiences on this forum, you likely have MAV. I have all the symptoms you have, and also feel better when I drive (as do many on this site). I have a history of regular migraines, and then bam got this one day. Hormonal changes can certainly trigger this, and I feel strongly that being on birth control pills in the past brought this on for me. I am currently 6 1/2 mos pregnant, and my sxs only got worse with pregnancy (they were horrible before). I cannot take meds now. I’ve been dealing with this for way too long (almost 2 1/2 years), and took nortriptyline in the past, and only got up to 20mg. It’s a tough drug to tolerate, but I know many stories of people who got their lives back on this drug. As soon as I have this baby (I’m also having a boy) I am going on meds, and will most likely try nort again. I didn’t feel better on 20mg but was told that this is still a very low dose, and most don’t see improvement until 30-50. I communicate with a lady (who also got this when pregnant - btw) who is pretty much all better on nort. She started feeling some improvements between 30-50, and is now on 100mg and is pretty much normal. She, though, was also doing well on lower doses, but needed to keep on going up to get better and better. Her story gives me hope, and I hope it does for you as well. Keep us posted on how you’re doing.

Thank you so much for your reply, cassada. I think I might have to look for Heal Your Headache on Amazon…
I wouldn’t mind the headaches ALONE…but the dysequilibrium…this is what gets me. I just don’t feel “normal” 99% of the time.
I have to work a full time job, no choice in that. So far I haven’t had too many problems at work, besides headaches (which I can deal with), and the feeling of the floor bouncing. Maybe it’s due to the fast-paced environment I work in, one doesn’t have much time to dwell on feeling crappy. But I pray I will be able to continue working. I feel sad for those who have been debilitated by this, to the point that they can’t work.
I just want to work and take care of my house, husband, and son. I am really hoping I can find a routine, be it meds/diet/lifestyle, or just diet/lifestyle, that brings some relief.
And I pray you find relief as well.
Why are we the “lucky ones”? :frowning: As a nurse I try to keep it all in perspective…that it could be much worse.
I thank you so very much for your feedback.
Love,
Janel
p.s. added a pic

I forgot to mention that I have tried the migraine diet strictly without success. Some docs recommend it, while others do not. For me, I know i need a potent drug to break this horrible migraine cycle. Guess it’s worth trying the diet, but i’m not too positive about it as it didn’t help me; it does help some a bit.
definitely worth reading heal your headache

Thank you, MAVLisa. Thanks a bunch for your feedback. It means a lot for you all to read and respond.
Although I’m not feeling my best, I would like to get pregnant again. It has always been our “plan” to have 2 kids close in age. But I see that by trying to take meds, this can get a little tricky…and that some people feel WORSE while pregnant. And with how difficult my labor and postpartum has been with this baby, I won’t lie, I am scared to go through all this again. Terrified.
Nortrip: so does a person just wean off if they find out they are pregnant? I would suppose so, since going cold turkey is likely to make one feel crappy…
For now I am just taking things day by day. Feeling lucky that so far, I am able to keep working. I have interviewed all over the place, trying to find a less demanding job, where I could go at my own pace, rest when I need to…but in this economy, there isn’t much. Even for nurses. So for now, I need to keep the job I have. I provide the health insurance for the family, too.
Take Care, everybody. And keep in touch. It’s nice to meet you all.
Janel
:smiley:

Janel - love the pic. your son is adorable.
as far as future pregnancies, I guess we just have to take it one day at a time. I am an only child and always wanted siblings, so I would love to have a few children. But, for now, I just need to get better. Unfortunately, I had to take disability from a job I love (clinical psychologist), but I have to believe that I will work again one day. Thank goodness my husband is supportive and supplies us with health insurance. I have looked into pregnancy and m eds quite a bit. Nortriptyline is a category D, and I thought it was a definite no no with pregnancy. However, my husband (who is a physician) had contacted a psychiatrist doing research on preg and drugs, and said that nort. would be safe to take. That being said, I was still too afraid to take it.
All the best to you. keep us posted. I sure hope nortriptyline is the answer for you

Welcome, Janel. You are in the right place. Everyone here is very supportive and knowledgeable. This is truly a debilitating illness and can make even the most patient people very frustrated. I think Lisa has it right that it may be worth trying the nortriptyline at a higher dose. I couldn’t get past 10mg but feel like I may have bailed too soon (it was increasing my blood pressure quite a bit). I too started out much like you and seem to have progressed with much more constant dizziness, although it could be attributable to lexapro, which I am trying now. Like many here, my anxiety has also begun to creep up fairly constantly as time has passed. I think we will all get through this but it will take time and patience, something that some days I dont feel I have a lot of! Ben

Janel - I forgot to mention that my doctors have told me that once you are better on a med, you can eventually stop it, and many do not have symptoms again in the future. Different doctors have differing timelines about how long to stay on a med once you are better. I can’t wait until I am better, and considering such an option.
Ben - you are right. We have to be patient, but it is tough. Are you ever considering trying the nori again? I am either going to take that or Topamax after I give birth.

Janell,

You might want to read the success stories section, there are a number of young woman there that had MAV kick up with child birth. Perhaps their success will help you.

Sally

Lisa, you are SO right…patience is very, very hard with this condition! Some days I have some (little) and other days I have none. I am not sure about nortriptyline again. So many have had success with it, I may try again. It really bumped up my anxiety at only 10mg and it increased my blood pressure so I dont know. I am still hoping to see something positive from lexapro, it has now been 4 weeks but only 2 weeks on the therapudic dose of 10mg so I will give it at least another 2 weeks. It is so hard to know when to call it quits with a med…yet another area of frustration! I hope you are having a tolerable day. Ben

Welcome to the board though I am sorry you are going through this illness like the rest of us here.

I would suggest you get the book “Heal Your Headache” and “The Migraine Brain” both have good points in them that may or may not be of benefit to you as you go on this journey. Both are on Amazon so you can order them there at a reduced price.

The things I can say have benefited me are in the following"

  1. Following the migraine diet…( I know it has not worked for some but for me it did make a big difference) You have to be very strict with it but to me it was worth it as ill as I was when I started it back in 2008.

  2. Stay on a strict sleep pattern, of all the things I have done this has made the biggest difference to me. I go to bed at the same time each night and get up at the same time each morning. (within 30 minute) on either side.

  3. Try and get 30 minutes exercise each day…this is the hardest for me to do as it seems to set off my symptoms. But all that I have read and the doctors all say this is important.

  4. Drink plenty of water…that is all I drink other than a bit of juice during the day. About 60 ounces a day is what I consume.

  5. Find a doctor that is familiar with MAV , and be prepared they all seem to address this from diff perspectives. You have to figure out what is going to work best for you. Find someone you feel comfortable with and have confidence in treating you and helping you on this journey.

  6. Do not push yourself too much …your body will let you know when you have to slow down and you must or you will most likely pay the price (or that is how it works for me).

  7. Realize there are others in the same boat and we are here to listen and support you and offer what has worked for us though not the same thing that works for me or others may work for you. It is trial and error.

I have tried some of the meds to this point I have been unable to tolerate any of them other than I take a very small dose of Valium everyday. 2mg it helps me with the anxiety and rocking sensation …

Some people find they have to wear sunglasses because of the lights, others have to stay away from scents and chemical smells (HUGE trigger for me) I carry a mask with me everywhere I go.

It means changes until you get the proper treatment that works and even then IMO without some lifestyle changes the meds alone will not get you to 100% neither will the lifestyle changes by themselves in most cases. It is a journey welcome aboard and we are all on the same train right now.

Ben - I didn’t mean to jump the gun about the nort - I am hoping that lexapro helps you. I am not at all thrilled with trying nort again, as it was the toughest one to tolerate for me. But, at this point, I am not sure I have a choice. I have a few months to decide. i’m thinking nort or topamax.

Janel -

Hi, I was diagnosed with MAV in 2008. I suffered for like 7 months before getting a proper diagnosis. I am currently under the care of Dr. Hain in Chicago. I currently take Verapamil. It took awhile to “kick in” so to speak. As of June of 2009, I have had mostly 100% days. I do have flare ups here and there, but they are totally tolerable. I have a 3 year old and a 9 year old. For a year, while suffering from the symptoms horribly, I had to depend on my parents for everything. My husband works long hours and when he was home he wasn’t the most understanding. He seems to “get it” now, and if I have a flareup is more understanding. I know the diet helped, though I have strayed now that I feel almost normal most days. The floor bouncing was the worst. I had your symptoms.

I just wanted to let you know that this can subside. I am 34 years old and was told hormone changes are the culprit. I do have a history of cluster migraines.

Stay positive. You’ll be okay. I know this condition causes so much anxiety, etc. I was told that it will go away and reappear at menopause. Gosh, I hope not. I don’t ever want to relive this whole experience.

Nance

Thank you to all who have replied…it is comforting to know I’m not alone.

Yes, this does cause some anxiety. I never know if my symptoms will get worse from here, you know? I have never been so dizzy that I have nearly passed out, but I do get scared about being home alone with my son. What if something should happen? If I dropped him? These are rational fears, I think…

I started back up on the nortriptyline, and now I know I have to start asking around at work…for a neurologist who is familiar with MAV. I know I will need to increase my dose, see if it works, and if not, try something else. But I want a doc who is up on the literature.

It would not be out of the question to drive to chicago (4 hrs away) to see Dr. Hain. Is this something I should consider?

I wish my husband could get an idea of what this feels like. It’s been 4 months since my son was born (and since my acute vertigo) and I have been telling him…“something isn’t right, something is off”. But trying to explain this isn’t easy. It’s all the energy I have right now to work full time. I haven’t been sleeping that great either. I feel anxious when I’m trying to fall asleep. :frowning:

On that note it’s back to work tomorrow…

Thanks a MILLION for all the replies. Take care everyone…
Janel

Nance: Sorry to disappoint you but my MAV actually started at menopause. I have been suffering off and on for about 3 years. I have some good days some bad. I do not take any meds. I was given Lexapro at the beginning of this by my primary care dr. but that was horrible. She told me to take a small portion (1/8 of a pill) which I did and spent the whole next day in the bathroom vomitting and dry heaving. It was horrible. I have not tried anything else since. When I am having a really bad day and feeling very motion sensitive I take Bonine (which is over the counter meclizine) and it calms me down within the hour or so. But otherwise I tolerate the tilting sensation, the feeling like I am walking on jello, etc. I have been told that when my hormones level off and stop fluctuating and my body accepts my new levels that this will go away. I try to stay positive thinking that any day now I will feel much better. In the meantime, I work full time (actually more than full time as I have my youngest son in college) as a paralegal/legal assistant.
Janel: welcome to the site. Hopefully you will find great suggestions here on how to deal with MAV.

— Begin quote from “Joanmac”

Nance: Sorry to disappoint you but my MAV actually started at menopause. I have been suffering off and on for about 3 years. I have some good days some bad. I do not take any meds. I was given Lexapro at the beginning of this by my primary care dr. but that was horrible. She told me to take a small portion (1/8 of a pill) which I did and spent the whole next day in the bathroom vomitting and dry heaving. It was horrible. I have not tried anything else since. When I am having a really bad day and feeling very motion sensitive I take Bonine (which is over the counter meclizine) and it calms me down within the hour or so. But otherwise I tolerate the tilting sensation, the feeling like I am walking on jello, etc. I have been told that when my hormones level off and stop fluctuating and my body accepts my new levels that this will go away. I try to stay positive thinking that any day now I will feel much better. In the meantime, I work full time (actually more than full time as I have my youngest son in college) as a paralegal/legal assistant.
Janel: welcome to the site. Hopefully you will find great suggestions here on how to deal with MAV.

— End quote

I think that the menopause hormonal changes have a lot to do with mine as it started last year when I was 47 and I know that other things have changed during this period …Joan I am curious does your doctor think that once you are through the “change” this will go away? I am glad you are still able to work as I lost my job of 23 years over all of this. I could or have not been able to take any medication to this point …other than small dose of Valium. I tied the Lexapro and it was awful for me also…

Timeless:
In the FAQ of the neurologist on this site, Dr. Hain says:

“Migraine is one of the few things that gets better with age, and because of this, it usually gets less intense in both sexes. In women, migraine has two peaks – one around the age of 35, and a second at menopause. Because of the age dependence of migraine, driven by hormones, migraine typically gets better in women after the age of 55.”

I HAVE to believe that when my hormones stop fluctuating I will feel better. I know over the last few years I do have times of feeling almost normal. I also know when I feel bad I can also feel my ovary “doing something” or trying to do something. I really don’t want to try any of the meds if this is going to go away within the next few years (I am 42 now).

What does your dr. say about hormones?

Sorry, I guess that was wishful thinking … I am actually 52 now!

— Begin quote from “Joanmac”

Sorry, I guess that was wishful thinking … I am actually 52 now!

— End quote

I do not think she completely understands the correlation as she is very young and most of her patients with menopause do not seem to have all the symptoms I have right now.

However she did a lot of new blood work when I was there to check all my hormones to see where they are at presently and I know when they were checked last time they were low but I cannot take any HRT because of breast issues. If I could be assured this would end after menopause I would be so happy and I hope that happens…my problem is since I had a partial hysterectomy years ago it is really hard to even know where I am at in the menopause cycle other than I know things are really out of whack on a lot of levels.

PS Joan at least you are 52 which is a lot closer to 55 than 42. :mrgreen: