Went to ENT today...

Thanks for the info. I will check into it. I do take Xanax when it gets bad. Are you taking other meds? I'm sorry but I can't remember what your diagnoses is.

MAV is my diagnosis. I was put on propranolol, but cannot take the dose they want me to... I take only 30mg. It helped, but not totally. One of my triggers is hormones - I've been using bio identical progesterone for 3 yrs, and have quit it, and have seen improvement. Weather is also a trigger, late winter, early spring not good. I am great now. No real dizziness since May. I do think the propranolol has helped, but I need the klonopin when the dizziness /vertigo breaks through. I also didn't believe it could be MAV, but I finally accepted that since the meds, diet have helped, it probably is MAV. It is merely migraine affecting the cerebellum or inner ear. Sometimes there are trigger points in the back of neck that can be injected with botox.

Its great your feeling better.  I went thru peri menopaus in 2008-20011 and looking back in all the note I kept, I found alot of references to the same type of dizziness I'm having, the rocking/swaying and at that time ws diagnosed with BPPV and treated and it went away after 3 years according to my notes.  It was an awful time during all that, I honestly didn't think I would make it thru it.  Then it calmed for 4 years and wierd thing is I'm 4 yrs  post menopausal and it all is back.  I wonder if hormones has anything to do with it.  

Hormones are definitely implicated in migraine and with general dizziness/vertigo. The problem is getting them properly balanced longterm, which I'm beginning to think is impossible! If you read about menopause and migraine disease (including MAV), you'll find that perimenopause can cause increase, or new appearance of migraine, or a pattern change. I used to have one classical migraine every 2 yrs, then suddenly a pattern change into MAV 3 yrs ago. Migraine or MAV can then go away after perimenopause or appear for the first time! So you see it can be all over the place! And it definitely is something that can flare up, and then go into "remission". MAV responds to finding your personal triggers, but those triggers may be uncontrollable, such as with hormone shifts. Personally, I would love to take the bio identical hormones, as they help me in so many other ways, but my migraine disease is triggered by hormones (I could never take the birth control pills ).

If I recall correctly, your dizziness improved on the amitriptyline, but then you had a bad side effect. Since your dizziness responded to the meds, isn't that somewhat indicative that you have MAV? Maybe ask about Effexor. It is also being used in MAV, and will help your anxiety as well. You have to start very low on it, and work up slowly, because it can sometimes worsen anxiety at first. It is a newer antidepressant, doesn't tend to have the weight gain side effect, and lower doses (37.5mg, I believe ) are all that is needed as a MAV treatment, and at that dose, is rarely associated with withdrawal symptoms if you go off of it after awhile. I hope you feel better soon.. I hate MAV!!!

Oh, also propranolol helps with the physical symptoms of anxiety, and is a pretty safe migraine preventative as well.

I agree... menopause is impossible to control.  Talking with my gyn nurse practioner she said the hormones do not stop dropping after the period stops they can continue for years, as can menopause.  I have hot flashes for about 2 yrs but in the past few months they've gotten worse.  Can i ask you something, do you have dizziness before hotflashes, not just during but before the flash hits?  I have bad dizziness before the flash sometimes, and the flash seems to last longer when this happens and is more intense, I usually get soaked with it.

I tried hormones when the peri started and boy did i have problems, I was able to use progesterone for awhile, but not anything else, it all seemed to kick in the anxiety.  Peri was just horrible for me.  

About migraines themselves, I have alway had what i thought where sinus headaches, but now i'm wondering if they were some form of migraine.  Now I get dizziness a few minutes before the headache which to me feels like a tension headache mostly and have pain in the neck and upper shoulders with this type headache, but then sometimes I get another type of headache where I can't stand loud noise, nausea, I guess thats the migraine.  Its all so confusing.  Trying to figure out what the triggers are is impossible.  I have what i call dizziness maybe there is another term, but feel like I'm moving all the time, wether its at baseline or bad, its there.  So having it all the time its hard to figure it out.  but I do remember having this same dizziness during peri but it was BPPV and when treated and i did the brandt-doroff exercises it went away.  So I guess it could have changed in the past 3 yrs before it hit again as MAV.  

Yes since the amitriptyline did work except for the efects, yes its kind of the test for MAV.  I took effexor years ago and it made me feel like i was taking speed, so he said done with that one.  I was given nortriptyline, which is in the family of amitriptyle, but talking to the pharmist about the side effects being the same or similar he said it very possible.  So I really don't know what to do.

I think I will ask the ENT on monday about the propranolol.  

Thanks for all your help and for chatting, sorry if I've taken up so much time.  I am just trying to get a handle on this so I don't go insane.

 

I think i should be called dizzylizzy?

Lol

What is clonopil

And what on earth is mav

Hi Patty,

You know, with the hot flashes and dizziness, you may want to ask about verapamil as well. Hot flashes and even dizziness sometimes are vasomotor symptoms. Verapamil can help the MAV and hot flashes by relaxing the blood vessels. It can be given to women just for hpt flashes, who cannot take hormones. And one of the premier dizziness and balance centers here in the US has great luck using verapamil for MAV. It was my neuro's first choice for me, but I had already been put on propranolol by another dr. Propranolol can also help hot flashes too. Since I have been on it, I don't really get the hot flashes anymore, but yes, they were associated with dizziness both before and during.

Sinus headaches, lacking actual sinus infection or disease, are almost always migraine. My allergist actually diagnosed my migraine, even tho I thought I had sinus disease. Yes, it sounds like you've had a history of migraine, which makes MAV all the more likely. I really think that once you find a med you can tolerate (ask Dr to start low and work up) , you will feel much better!

Hi DizzyLizzy2!

Clonazapam or klonopin is a benzodiazapine. It's used for anxiety and is a vestibular suppresant. It helps me tremendously during my dizzy times.

Forgot your second question. MAV stands for migraine associated vertigo. And it doesn't have to be actual spinning vertigo. In can be a rocking feeling, unsteadiness, floaty feeling, etc. It can and does appear without typical migraine symptoms, and is treated with by avoiding migraine triggers (like adhering to a migraine diet), and/or taking migraine preventative drugs.

Patty, I forgot to mention- I have read many online medical journal articles about all of this. I remember reading that BPPV as well as other vestibular disorders are more common in people with migraine. Lucky us.

Can you elaborate please on what is a migraine diet?

I will ask about the verapamil also.

I did notice the days I took the Amitripyline the hot flashes were much better. I wonder also if the anxiety and the nervous system could be making them worse. There are so many variables with the body especially hormones, skies the limit I suppose.

Isn't it odd how so many things involved with migraine like you said, you have no idea until you have some crazy disorder....yup we are lucky, I feel like a Guinea pig at times.

It's great talking to you, you have a lot of info, that is so helpful. You have definitely done some research, i don't think I've been reading the right info. I read things online all the time, but I think this is so complicated at times I just don't understand some it. I did tons of research when my thyroid went crazy and the peri started that got me into symptoms about so many things and I think that fueled my anxiety. I can hear someone talking about symptoms and tell them what's wrong...they say knowledge is a good thing but sometimes it's not.

I'm going to try now to understand how my anxiety is fueling this disorder and try to stay calmer so maybe this will slow down and I can heal.

I appreciate all your sharing with me and being so kind and understanding.

You can Google it, but basically it is one that starts by eliminating all known migraine trigger foods, and then you add back one at a time, wait 3days, and if you don't have an increase in symptoms, you know you're ok with that food, at least in some quantity. The biggest offender is caffeine. Other known migraine trigger foods are: citrus fruits and juices, chocolate, aspartame, msg (which is in almost every can or box food, often hiding under other names such as autolyzed yeast extract, natural flavor,soy protein isolate, and more), onion (but green onion, Lee's and garlic are ok), nitrate and nitrite containing foods, such as cured meats, hot dogs, lunchmeat, sausage, wine and dark spirits, champagne, fermented foods such as soy sauce and yogurt, and mushrooms. Additionally, some people improve on gluten free diet, but it usually isn't called out as a migraine trigger. Personally, I cannot eat boxed frozen dinners, many canned goods such as broth, and fast food just about kills me. Red wine is bad, and I do have coffee, but only one cup in morning. More than that, and the MAV comes back. I seem to be ok with citrus and yogurt in limited amounts.

I forgot cheese, especially aged cheese. Mozzarella is usually ok, as is American cheese and cream cheese.

Thanks, I try to eat healthy, unprocessed foods, so most of the foods you mention with the exception of yogurt I don't eat. You mention citrus juices, maybe this is what gave me the BPPV along with a bit of a headache. I rarely ever suffer from migraines, and once in a great while a headache triggered usually after drinking something too sweet like fruit juice. But this last BPPV sent me into a whirlwind spin. Coffee is a hormone disruptor so I cut that out.

Patty, they are actually coining a term- something like "migraine associated vertigo anxiety". Anxiety is a normal outcome of dizziness. People with actual inner ear disease, like menieres, get anxiety. Hormone fluctuations cause anxiety as well. As far as thyroid going wacky, the dropping estrogen levels mess with thyroid function, which is why it is more common in women, and at menopause. I love to research because I am a scientist! Not a medical scientist, but a materials scientist. But I think most scientists have inquisitive minds and love to solve mysteries. I have read thousands of journal articles on dizziness and all its associated causes.

Here's a question for you- is your anxiety more physical, meaning racing heart, sweaty palms, clenching jaw, etc, etc. Or is it more mental, like ruminating or obsessing on things? Is it only present with the dizziness, or during times when the dizziness is acting up? Or has it been an issue that has affected you even when you've had extended dizzy free times?

BPPV is not the same as MAV. It is caused by crystals or tiny stones moving location within the inner ear. While those with migraine tend toward other vestibular problems like BPPV, it doesn't mean everyone with BPPV has migraine. Have you been diagnosed with MAV?

BPPV can usually be fixed with certain maneuvers which vary depending on the location of the crystals.

Unfortunately some of the migraine trigger foods are healthy. I forgot to mention avocado and nuts :-( And some see improvement with gluten free. Others, even without a menieres diagnosis, benefit from a low sodium diet.

My previous doctor said I had MAV, because I tend to get ear headaches associated with it, at least that was back 10 years ago. The migraines are rare but when they come on it makes me cry.   My new doctor said this last espisode I had was BPPV. I did the Epley manuever and it helped while I took medicine for it.

Funny you mention age cheese since when I eat it I either get a headache or my body has an allergic reaction to it. So I stay away from aged cheese. Yes, I've been told to steer away from gluten made foods, cutting out my pizza's to once or twice a month. I eat nuts all the time, can't say it triggers any headaches, nor do avocados. 

It's all very individual. Not every known trigger will affect everyone. I am good with avocado too, fortunately! But I need to limit nuts, especially almond.

This is a great question. I ruminate in thoughts that become hard to turn off. I worry about getting sick and others getting sick. I've had anxiety for years but it's pretty dormat, but when I go through something like my thyroid going out and I was so sick, I spent 2 yrs trying to get a diagnoses and being told it was just anxiety, then it was gone for many years after getting the meds for the thyroid. Then the peri started and and things went crazy again including the thyroid and it came back trying to figure out what was wrong again. Then dormat again for a few years until the MAV started. Now I find myself trying to get the right diagnoses again. I know when I feel the slightest thing of dizziness or off balance my mind starts to worry and it goes in circles for days, almost like a richule. When I have no dizziness I'm not anxious. Although I've had times when I'm not anxious I find myself wondering when it's coming, of course that only brings it back. Of course I have physical symptoms with it. I can tell you this I know that decease is a fear for me, I lost someone very close to me many years ago and she had sinus infection at least we thought she did and it turned out to be cancer. I know that when someone dies I become very stressed and get sick, then it all starts again. I thought it was odd when the thyroid disorder surfaced the way it did but the endo told me I was born with it but it stayed dormat for years and the stress I was under brought it to life. When the peri started I had gone through another significant death and was stressed and worried about disease again, then a few months before the MAV started I had lost 5 people and was very dressed again. So I believe death has slot to do with this causing so much worry. With all the symptoms I have and no one really being able to be clear about it like a search for me to find something before it starts. Sounds crazy I know but it's an obsession. So I believe o obsess and ruminate. Wow a lot of info there. Sorry I guess it all just rolled out.

Strange thing I find is these disorders are real and I didn't know about them until I got them. I guess it's amazing how the body will react to stress and how it will bring to life things we never gave a thought to.

Patty, the SSRIs are really good for treating ruminating thoughts and obsessive thinking. It's too bad the Effexor wired you up. Most family drs are not experts in starting an anxiety patient on ssri. When I had to start on one 16 yrs ago, when panic attacks became out of control, I self-referred to a psychiatrist because my very nice family Dr kept putting me on ssris that made me so wired and anxious, that I couldn't leave the house! The psychiatrist had me start with the pediatric dose of Prozac, AND break it into thirds! He also gave me low dose klonopin to dampen the initial side effects of the Prozac. I slowly worked up, and the difference after 10 days was night and day. I didn't worry, I would be smiling driving to work looking at the trees. Effexor comes in capsules, so harder to split. But it can be done with Dr and pharmacists guidance. They can give you empty capsules to split the dose. You just have to be careful with anything time release, and work with the pharmacist.

If that's just not an option, talk therapy is actually quite helpful. And, there are no side effects! I highly recommend it, especially with the anxiety regarding disease and death. I do understand. I can be the same way, and you can really terrify yourself. At least consider talk therapy, if not an ssri. Stress is not good, and they can give you tips to deal with it.

Propranolol is frequently used for public speaking anxiety. It doesn't help ruminating thoughts, but blocks the physical anxiety symptoms that are generated by our thoughts. It is relaxing.

There are other classes of drugs that are not ssri's that also work to reduce anxiety. Gabapentin worked for me to reduce anxiety & any deep thinking obsessive ideas after my mom died and also going through perimenopause. This was a few years ago but recently I was given resperidone helped to reduce anxiety. It works really well to reduce anxiety.

Hi

Thanks for the info. I have been thinking about the meds, I have a question. How hard are they to get off of? I've talked to people who are on anti d's and they can't stop taking them.

I've tried Prozac and celexa and had suicidal thoughts on them both, I can take Xanax when needed but I don't every day. I wish they made something like it and maybe I wouldn't worry about the side effects.

I know I probably need something because I have GAD and this dizziness has made me so much worse. I should understand I've had thus dizziness for over a year and I'm still here. I guess the sensations get to me. I know I have anticipatory anxiety also. Waiting each day for what's going to happen, being afraid to go out because something may happen. I know it's anxiety because if I take the Xanax it gets better, rationally I should be able to accept yes I have MAV but the worrying and waiting each day for something is making it worse.

I thank you so much for your help and just listening.

Hi Patty,

From what I uunderstand, antidepressants are given in a much lower dose to treat migraine vs to treat major depression. I found I did very well when on prozac for anxiety at a lower dose, 10mg. Dr kept wanting to go higher, but I was doing great, really relaxed and happy, so he kept me at 10mg. Was not hard to get off at all. Effexor, which is effective for MAV, is actually a SNRI, influencing both serotonin and norepinephrine. Many of the other ssris are not effective migraine preventatives. I have an online reference for the dose/withdrawal relationship for effexor in treating migraine, but I am not allowed to post links or cite websites here.

Klonopin is in the same family as xanax. As a matter of fact, I used to take xanax until I started getting terrible rebound anxiety. It was that psychiatrist that switched me over to klonopin, since it longer acting, and you don't get that rebound anxiety. I was taking a low dose of klonopin everyday for years. Now, I take it sporadically, maybe once a week; more if I'm having the dizzies. I had no problems vastly reducing my dose, but the propranolol helps anxiety too, so I think it factors in for sure. If you tend toward depression, propranolol can worsen that, so it is something to watch for.

I've seen a lot of reference to using the benzo Ativan instead of klonopin lately. It may be have a better addiction profile, but I am not sure if that's the reason.

What I do think is that those of us with dizziness, anxiety, and migraine tend to be very sensitive to meds, and often require lower doses of meds. It is definitely true for me!

And yes, I've heard the horror stories of those that cannot get off antidepressants. Everyone is different, but dose has an effect, as does the type of drug. I've heard bad things about Paxil the most.

I've read of a few MAV people who got better on Cymbalta, with a low dose benzo. It's an off label use for Cymbalta.

Maybe ask about starting a low dose of propranolol? At first I took the 10mg and cut it in half! Lol. My daughter was like, mom you're so calm and nice! I worked up to 40mg, which was good. Neuro wanted me at 80mg... waaayyy too much for me. I felt like I was walking in mud. So back down to 40. I now take 30, and occasionally 20. If I stay below 30, the MAV comes back. The only reason I was trying to cut back is that it can cause weight gain, and I've definitely gained weight on it. But it's better than the dizziness for sure, and I experience no side effects from it now.

Hi

Hi

I'm sorry that last message sent I hit the wrong button. I hate to assume and I want to address you by your name, is it Liz?

The information is helpful. Could you please help me with this, I'm wondering which neurotransmitters I am missing or maybe to much of. Since I am anxious and worried all the time and my brain has built in this immediate response to any sensation of movement that goes through my body not just my head, which meds are most likely needed. I don't understand much about serotonin, dopamine and ephenefrin, I'm guessing these are the transmitters that are messed up. I don't think I have clinical depression, I think it's because of the dizziness and the frustration of what is causing it. I do know I have anxiety, anticipatory anxiety.

I thought taking nagnisium would help and it does some. I also take a vegetable based multi, d3, just started omega 3 oil. I read about natural things that can help but I wonder about those to.

I had a talk with myself last night and I finally realized I'm so afraid of getting a disease that MAV has represented that to me, that's when I realized it's not a disease it a disorder just like my thyroid and menopaus. MAV will not kill me although because if the way it came on and how the sensations of dizziness change, in my mind it was a disease, it's not a cold that will go away. I've become obsessed with the symptoms and looking for something more. I guess that's health anxiety in a nut shell. This is all I think about, as you can see. I guess my amygdula has grabbed this good and every feeling or sensation immediately takes me into anxiety and fear. Sounds crazy I know but is true. I now wonder if my brain can be retrained to not jump to these conclusions. I do only have a disorder, I don't think it will get better until I accept this. Does this make sense?

Hi Patty,

Yes, my name is Elizabeth, and people call me every variation except Beth! So Liz or Lizzy is fine.

As for what neurotransmitters are off for you specifically, that is pretty impossible to tell. They all work together, and add in hormones which can fluctuate widely, you have a whole soup of chemicals interacting. That is why the use of the various medications for anxiety are somewhat trial and error. I was told by one dr that if a close relative had good luck with a certain med, the possibility is higher that it will react well for you.

You said you got suicidal thoughts on ssris before. That is a very important piece of info to give whatever dr may be prescribing to you. I would also recommend consulting a pharmacist. You can go over your symptoms, what you have taken in the past, and what reactions you had, both positive and negative.

It is so very common for anxiety, depression, and even dizziness to show up at perimenopause and menopause. Many, many women go on antidepressants at this time. I recently trialed a low dose bio identical estrogen gel. I have to say, I felt better, happier, like I got my mojo back! But within a week, I was getting one migraine after another. We were worried about that, as my migraines have always been triggered by birth control pills. So I cannot take estrogen. Progesterone does not trigger classic migraine for me, but seems to make the dizziness worse. So I've stopped that as well.

MAV will not kill you! And, it can and does go away, especially once it is treated. Even those on meds can go off them and never have MAV again. Some have a flare here and there, and some flare only when they are exposed to triggers they are sensitive to. It is not usually a life sentence. Once your anxiety is under control, the migraine disease usually improves. Did u ever get that book I told u about? I so highly recommend it, and if you read it, every time he talks about migraine, just think MAV.

I can't remember, but are you taking any hormones? Some see drastic improvement on hormones, and some get worse. I am in the latter group for now, but that may be worth investigating for you. You mention going to an ENT. Have you seen a neuro? I've gotten the most help/information from my neuro. And I will reiterate my recommendation for talk therapy. It really helps with the fears and anxiety, especially cognitive based therapy. It teaches you to reframe how you view things. It was very helpful to me when I went through a period of very frequent heart palpitations that i thought would kill me.

I wish I could say that I knew the perfect med for you, but I cannot. A neuro would be a good place to start, and even then, it may be a bit of trial and error. They could also confirm your MAV diagnosis, as they are really the dr to see for MAV. Get a recommendation for a good neuro- mine is a very calm, caring woman, highly respected in her field. She is used to MAV patients not believing that migraine is causing their symptoms, and used to the fact that they do not like to take meds! So she is very understanding and encouraging!

And finally, I am reading that 2017 will be a breakthrough year in the migraine realm. New therapies, new understanding. Keeping fingers crossed.

Hope that helps!

Hi Liz:

It's nice to meet you.

You mentioned seeing a neurologist, I thought I had a good one when this started, but he really messed things up for me. When I had head and pains back in 2010 I saw him and he gave me trigger point injections in the back of my skull wher it meets the neck and upper shoukder on both side, well when it started again last year I went back, he did it again but thus time something went wrong and the steroid knock out my thyroid meds and it messed things up terribly. Aplenty this happen in 2010 also but I didn't know that the anxiety I was having both times and my thyroid being so off was the problem until sitting in the endo's office trying to gunfire out what had happened and he said we went through this 5 yrs ago. I couldn't believe it, everything was exactly the same, so he carefully went through everything that happened this time and asked exactly who I saw and what treatments they di, well when I told him about the neuro and the injections I thought he was going to come unglued. He said there it is, you had steroids injected he said that's what has caused your thyroid meds to stop working right. I couldn't not believe it, he said did the neuro know about the thyroid and I said of course, he said give he his name I want to know exactly what he injected. But funny went I went back to him before I found all this out, he said you have chronic subjective dizziness and anxiety just take these kolonapin and it will go away. Then sent me away, so I never took them and I never saw him again. He never checked for MAV or migraine and he's suppose to be a top doc here. Even my ENT couldn't believe it.

But my ENT is a neuro otolaryngologist, aren't they suppose to be qualified to treat MAV? Maybe I should find another neuro, I don't know.

I did use hormones when the Keri started boy that didn't work at all, like you I was ok for a short time then it went haywire. So no hormones, my worst thing with meno is the hot flashes. Being 4 yrs into I don't think I would try them again.

I hate to say it, but I wrote down the book you suggested and I can't remember what I did with the paired, could you please tell me the name again. Thank you

I will be seeing the ENT tomorrow and see what he thinks.

Oh can ask you, when you started your meds where you on the anti anxiety meds before starting any anti-d's? I thought if so it may make it easier to tolerate the anti depressants.

Thank tou for all your help, it's helped so much

Patty,

Yes, a Neurotologist should be able to manage MAV. I thought it was just an ENT. Once my ENT ruled out inner ear causes, he said I needed to see Neuro for migraine treatment. If you're comfortable with you Dr, and he's willing to work with you on finding a med that works for you, the that's great. MAV is a diagnosis of exclusion. They rule out more serious conditions, rule out inner ear, take into consideration the clinical picture, your personal/family history of migraine, and then treat with migraine preventatives and or lifestyle modifications.

The irony of the last Neuro trying to give you klonopin for subjective dizziness, is that it had a very good chance of working! Klonopin is used to treat anxiety, vertigo, menieres disease, migraine, and even seizures. It is not a first line treatment because of it's addiction profile.

I was started on klonopin with the Prozac for the sole purpose of blunting the anxiety side effects that can occur in the beginning of treatment. So I guess the answer to your question is yes.

I will send you the book in a private message since I'm not allowed to post it here.