Depression/mav

I hate to admit it, but I think I am depressed. I feel frustrated, sad, and mad. I am frustrated because of the symptoms and not being able to find any hard facts that prove this can end altogether. I research this daily in hopes of finding a new break through. I am sad that I can’t do the things I used to do with my family and friends. I am so mad that I have this and no doctors really seem to even care. I emailed my doctor asking a few questions and he never emailed me back (about a week ago). I don’t want to take an antidepressant because of the effects I had on them the last time. The side effects were worse than the actual anxiety/depression. I never had this depressed feeling before the MAV. Are there any suggestions as to what you guys do to feel better emotionally? I am definitely avoiding going places again. I dread this summer. At least in the cold weather, I have an excuse to stay in and lay around. My court case is coming up against my contractor. I have to go before his lawyers and give my deposition on Thurs. How am I going to do that? I dealt with this shady contractor for 18 months and I am still not rid of him because of this court thing. We still can’t use four of our rooms because of the flooding problems we had do to his work. Sorry to vent. I wish things were different. I have so much to be thankful for but I don’t have the good health I used to have. This plain sucks.

Nance

Nance,

I am sorry you’ve been feeling depressed lately. Is it just feeling a little blue or does it feel like a major depression brewing? I have been dealing with this condition for 16 years. The good part is that i have made progress…the not so good part is that i’m still aways from 100%. I finally got off Topamax because it didnot help me. I have tried numerous medications over the years to no avail. As i have said before…the only medication that helps to keep me feeling Stationary…where the motion is less and my mind is more clear + i can go to a movie, resteraunt,…and hold a part-time job is Alprazolam (Xanex). I take one tab per day and generally that keeps me from being overwhelmed by motion…+ to be honest …without it i tend to become sad because i end up being homebound and just don’t feel well because of the motion. Also Verapamil gives me a little help. So i don’t recall if you have tried an anti-anxiety medication or not? The way i understand it is it helps to suppress the inner-ear nerve because MAV is directly or indirectly involved with the inner-ear. Without Alprazolam i feel like i’m in Choppy Waters and cannot think properly. Depending on how serious your sadness is…you might consider setting up a few appointments with a therapist. I have done that in the past and it gave me some help…especially if you connect well with the therapist. The way i see it…i am going to do what i have to do to keep me sane…until they find a cure for this crazy condition!

I hope your chipper soon!

Joe

Joe, if thats the only thing that helps, could it be that you have something else than mav, perhaps some phantom-perception of rocking that doesnt have a coined expression yet? Is it only xanax that helps or any benzo?

I cant recall, did you feel better/worse in a car?

Nance,

Being a woman, (at least I assume you’re a woman :smiley: ) and that this condition is migraine related, you do have the benifit of migraines coming and going with a change in a woman’s body. Wether it is pubirty, pregnancy, menapause, or other changes in your body, migraines can come and go. It may be years but at least you have some comefort that hopefully things will change for you.

Being a guy, I have never read anything on migraines coming or going with changes in life. I have pondered this question many times. I have experienced migraines most of my life, going as far back as my memory goes, not often, but they were there. Now, my migraines have taken on an alternate form from what they were to MAV and I have to wonder if they are going to change to something else in the future.

Dealing with this emotionally is tricky. The only advice I have is probably the hardest, acceptance. Accept that you can’t do everything you used to be able to do. Look for the things that you can still do, and enjoy. Avoid giong places during rush hour. Cheat when none of the above are possible. Such as I take an umbrella baby stoller with me when we take our kids out trick-or-treating. I always use a shopping cart when going to the store, even for a lough of bread. When going to crowded or busy places, I usually try to take some valium before hand. Other benzos work for other people. Oh, and benzo’s have a tendancy to make me drowsy, so when I am done with what ever it was I had to take the valium for, I hed straight for the couch and declare a nap time.

I hope that some of this helps.
Brian

Nance,

Sorry to hear that you are feeling so down. It’s hard sometimes when you are having a bad streak of days to not feel overwhelmed and sad. It sounds like you have a lot going on in your life right now, and I’m sure feeling not yourself everyday makes it ten times worse. I know for me, this whole MAV thing started after a VERY stressful period of time last year for our family. And, to be honest, my life is still pretty stressful, in addition to the MAV. I am hoping once things settle a bit, this all will too…with the help of the lifestyle changes I am making too. I hope that the same will happen for you. In addition, I think Brian was right about the hormone thing. Maybe this is just a result of things being out of whack…let’s hope.

I know that when times are tough like this, I try to think back to other tough times in my life and remember getting through those. My husband and I had a tough time trying to get pregnant and for almost two years, I sort of remember feeling like this…not dizzy, but just like not myself because trying to get pregnant basically took over my life…I was consumed by it. And, now we have our sweet little girl and those two years of ups and downs are a distant memory. The same will happen for this too…it’s just hard when you are in the middle of it to put it in perspective.

One thing that I did to help with the anxiety/depression aspect of all this was the program Attacking Anxiety and Depression. I wanted to try every avenue before medication and I really think this program made a difference. If you look on www.stresscenter.com it tells you all about it and they have forums and online support as well. The program is pretty expensive, but my library had an older edition of the program (with cassette tapes!) so I just borrowed it. It may or may not help, but I think it definitely helped me to relax and focus on me a little bit.

Hope your feeling better soon!

Nance…i tried Valium quite some time ago but it did not work nearly as well as Xanex. I have not used Klonopin yet because but i’m a little concerned about stopping xanex and starting another Benzo…because if Klonopin didnot work and i went back to Xanex…it might not work for me as well. I’ve heard stories like this. I have been intolerant to Motion Sickness all my life (driving as a passenger driving thru mountains in curvey roads)…being on a boat…certain carnival rides at the Fair. Most people outgrow this but i never have. So i believe the Xanex is really helpful with my inner-ear if infact this is where the motion is coming from. For all i know…i may have more than MAV and that is why the Xanex helps me. How much is this condition inner-ear related and or Anxiety related?? All i know is that the Xanex (for me) gives me help. I wish that i could go back to working full-time and making the good income that i use to (before the nightmare)…but until there is a cure…it does not look very promising. If i ever find a medication that gives me lots of help…i will be able to stop the Xanex.

Joe

Hi Nance,

I hope you are feeling better. You will be cured of this one day, I know you will! Everything will get better

Hey Nance,

Your posting could have been me writing this past weekend. I can relate totally to what you are saying and feeling. I have extra stress on top of the MAV right now due work issues and the combination of the two is really causing me to break down lately. I feel overwhelmed and helpless, as though none of these things are going to get better. (The latter likely will, but flares up from time to time.) The MAV sucks because there is no absolute, quick cure. However, on the other hand, we have seen people who have improved significantly from meds and over time. I know you said you are med-sensitive (many of us here are), but would you consider trying a low-dose antidepressant? At the very least, it might bring you some relief from the depression/anxiety. If you had a bad experience on one, try another. I really do think, unforutnately, that the only real way to feel better from MAV is to take some kind of med. Certainly stress reduction can help in whatever form you like (meditation, therapy, exercise), as a change in diet if you know of triggers for yourself, along with sticking to a set sleep schedule. Trying to look at it from another perspective, as in, "Well at least I don’t have _________ "(fill in the blank) can help a little too, but it still doesn’t negate the fact that you have MAV and that it is difficult. All you can do is go day by day, try to accept some of it, and see if there is any way you can try a med. I am in that situation now; my med is causing some side effects that don’t help the situation and I won’t know for a couple of months if the med will even help me, which in that case, I start all over again, but what else can I do? And I am NOT one who does well with “MAYBE this will work” type answers. My gut (and research) tells me that we can find some relief from MAV, but I am also a skeptic (or a realist), so I don’t just believe when one says “You will get better and be fine.” Show me the money as they say! LOL. Maybe the point is that we don’t 100% recover, but rather, find a med to calm the symptoms so one can have a good quality of life. That’s what I want and expect. I can tell you all this causes me to go through a range of emotions, none of which are particularly positive, and also triggers more emotions/underlying concerns. Having support here and with family can help to an extent, as you can vent; at least here we can relate and understand! It’s a double-edge sword so to speak if you are married, while you have daily support (which some of us who are single do not), it can also be problematic if your family does not understand and/or you have family obligations (events, etc.) that you are expected to participate in. The real problem with MAV is that it is so new; not all docs know about it or what to do about it; the ones that do can only try various meds - ones that may work for one person but not another. Because the research in this area is somewhat new, we aren’t hearing about the people who have recovered or are able to function while on a certain med. That does not mean they do not exist, however. So, while I do not have THE answer for you, I can say that we all relate on some level and the suggestions here (and elsewhere on the board) can help. Hang in there; I’m trying to too.

Best, Bonnie

Hey Bonnie…very nicely said. I feel very similar on how you expressed your thoughts and feelings to Nance. I’m glad that we have medications to experiment with because if you or i had this conditon a 100 years ago…there would be nothing! In my estimation…either what we have is Headache related, Vestibular related, Anxiety related…or a combination. My best guess as to why the one tablet of benzo (xanex) helps me is because it suppresses the nerve in the inner-ear. Also MAV brings on Anxiety…so it calms that down too. My diet has changed over the years in that i have cut out or cut way back on Caffeine, Msg, alcohol…lots of sugars and chocolate. I know these are all triggers for me. Oh yes…less stress and getting atleast 8 hours of sleep per night…going to sleep on a regular time basis helps too. But even with all those helpers…for some reason i have not been able to reach 100%…and like you said maybe this is a condition that improves but for many of us never reaches 100%. Time will tell…but it’s been 16 years…countless medications and only One tab of Benzo daily helps me.

Joe

Thanks, Joe. :wink:

I think it is also important to note two other things: 1. if you have other problems, such as an ear issue or another diagnosed balance issue (BPPV, etc), your symptoms may take longer to go away or you may need more/different meds. 2. not being 100% is not necessarily a bad thing nor did I say it to scare anyone! :slight_smile: You have to put things in perspective. If you can rid yourself of some of the worst symptoms, you will likely be so happy that you feel better that the lesser symptoms won’t feel so bad. Anxiety plays a role in MAV - either from MAV triggering it or if you have an existing anxiety problem (comorbid condition). Unfortunately, there are a lot of “unknowns” with MAV, but I am pleased by what we ARE seeing in the research literature and that it is being researched (even if seemingly in its early stages). Remember also that everyone is different; we may have the same or similar symptoms, but not everyone will be the same, nor will everyone react well to the same med. It’s important to keep a community like this one going, not only to share information, but also to support one another. Thanks to Adam and Scott for doing so!

Best, Bonnie

Thanks to all of you for your support. You guys always make me feel better!!! I had a great day yesterday, I felt about 90-95%, and today…well, I felt better but not as good as yesterday. I am not really sure what I do differently on a day to day basis. The only thing that isn’t the same is the foods I eat. I am back to being very careful with my diet again. On the days that I accept MAV, my mood is better. The days that I fight MAV, my symptoms increase and my mood is affected. My mom’s friend’s mother-in-law had vertigo and dizziness for a long time, I guess she couldn’t go to stores, malls, etc. She was very nauseated and visually sensitive. She was never really diagnosed, she had this for months! Maybe longer, a year or so. Eventually, it just left her. My mom just found this out last night and told me. Maybe that will happen to us!!! :smiley: We can all hope and pray. I mean this sincerely when I say that I pray for all of you guys every night. I am seriously considering trying effexor instead of the Verapamil I am on.

Nance

Nance,
I notice that you mentioned a fews weeks ago that you have been in contact with Dr. Hain. Based on you recent posts it does not seem like things are going a whole lot better for you. I am getting ready to fork out $350 tomorrow for Thursday’s phone consult. If he can’t do anything to help other than reiterate his web pages maybe it is a waste of my time and money??? What do you think?

9kidsus -

I emailed Dr. Hain’s office last week or maybe even two weeks ago - (since his business card suggests emailing) and I never heard back. My questions were regarding Verapamil dosage. Today, I called his office, spoke to Mark his nurse and he said they will call me back. I found out a lot of information that I didn’t know about MAV from my phone consultation with him. He informed me how migraine people are wired differently, more sensitive etc. He was the first doctor who actually believed me when i said that I am sensitive to meds. I only had one ENT locally that diagnosed me with MAV and Dr. Hain was my second opinion. I often think about going back to the ENT that diagnosed me and have him treat my MAV because it would be better than driving to Chicago for my appointments. The ENT that diagnosed me is only 3 blocks away from me. I am due to see Dr. Hain again in July, so I am tossing around the idea of just going back to my ENT. BUT…everyone says Dr. Hain is the expert on MAV and is the best. I don’t know what to do.

As for your telephone consultation - it is nice how he maps out the different treatment plans for you individually. He will send you a recap of his telephone consultation with you in writing. But do you have a local neuro or ENT that is currently treating you for MAV? (I can’t remember what your doctor situation is). I probably have benefited more from the information on this forum than anywhere else. Dr. Hain basically prescribed a medication that no one else had. Maybe my ENT would have if I would have discussed more options with him. I basically didn’t ask very many questions and I should have originally. I may not have had to get a second opinion if I would have been better informed about MAV from that ENT. I am better than than I was definitely, but not 100%. I still have bad days, though they are fewer. My head fullness/heaviness is pretty much gone and the rocking. That was a huge issue for me. I just always feel “off”, generally dizzy,fatigue,and brief vertigo spells once in a awhile. I am not where I want to be yet recovery wise. I just keep hoping this will just kind of “go away”. I know I keep talking in circles. I guess my opinion is…Dr. Hain will probably suggest Topamax, Effexor, or Verapamil. He did this for me and it says so on his website. It maybe a good idea to talk to him, tell him your exact symptoms, duration, etc. and find out what medication would suit you best. I would write down every question you have regarding possible causes, duration of symptoms,etc. He does take the time to answer each and every question thoroughly. I know the charge is expensive, I guess it put my mind at ease that…yeah, I do have MAV, these are my options. I just wish I would have gotten more precise answers as to why so many people suffer with this for years daily if it is just a “silient” migraine. Migraines don’t last 24/7 for years! My insurance covers office visits but not telephone consultations, I am not sure where you live though. A drive to Chicago maybe impossible for you. It may be worth talking to him on Thurs. He then could call in a prescription to your pharmacy for you right away, he did in my case. I would do the telephone consultation if you don’t have neurologists around you with expertise in migraine and migraine related symptoms. Sorry this is so lengthy, I just typed out what I was thinking when I was considering my opinion on your phone consultation. I know it is expensive. Maybe he will find a treatment option for you that will work. I hope so. Let me know what you decide to do. Good Luck. I know it is hard in deciding what to do.

Nance

Nance,
Thanks for responding! I have to call in today with my pymt and I was hesitating. I will go ahead and and call! We live in a smaller area, not a lot of options. Can drive out to a university town, where my ENT first thought my problems were migraine related. No neurologists who are knowledgeable with MAV. I struggled for months just getting someone to accept me as my neurologist kept saying it must me Meniere’s while my ENT kept saying it’s migraine related. I just felt like neither really knew much at all and kept seeing me as the square peg in the round hole, looking to pass me off. I am also scheduled to see a neurologist next week who specializes in hormonal migraines. I am so fed up with long highly anticipated waits for doctors only to be let down as no one seems to offer any real help. I tired of long histories, touching my nose, walking straight lines and having my feet touched. Then having to listen to their long winded spiel of “rebound headaches”. Then I throw into the pot that we have left our child planing in the Lord’s hands so I really can’t take most of the preventative meds. I guess that’s another story, just typing out loud!

Hey Bonnie,

In the early 90’s when the condition began i was diagnosed as having Panic Disorder…then a couple of years after that doctors diagnosed me as having Inner-ear dysfunction w/anxiety. A number of years later one doctor thought i might have BPPV . Then in 2006 i went to UCLA and saw a Dr. Robert Baloh who diagnosed me with Migraine Equivalent and or MAV. So the last diagnosis seem to fit my symptoms the best. But still…who knows for sure if it’s only MAV? I guess it is the Million dollar question. :slight_smile:

Joe