I need help! Advice!

Hello! I will try to keep this short but I really need help. Since fall of 2015 I began noticing an increase in feelings of vertigo(sensation of movement). I’ve always felt kind of weird since 2006, but in the fall of 2015 things became harder to ignore. I was going through a couple of stressful events at the time(moving, starting a serious relashionship,etc) I also kept thinking how I always felt weird and started to stress myself out. Well fast forward to now and I’m not doing any better. Some of my symptoms include vertigo, or a sense of motion that is constant except when I sleep. Another disturbing symptom is that when I leave my house or go outside, things feel very surreal. I have a hard time focusing or smiling at people because I am trying so hard to figure out where my body is in space. Another thing I notice is that towards the end of the month or beginning of a new month, my symptoms start to feel worse. Last month, I had whirling dizziness that was uncomfortable. I have seen a few neurologists, an eye doctor, two ear doctors, etc. have had an MRI and a hearing test. A few of the doctors think it’s headache related. One thinks it may be Mal De Debarquement. I’m honestly at my wits end. I feel like I’m having less good days. I also am stressed because I tend to link this with my boyfriend. I started to feel worse when we started dating because I started to stress about my symptoms and I always think I should break up with him so that I don’t stress, but it doesn’t make sense to me. I am currently on amitritalyne 20mg and working my way up. Havnt noticed any positive changes yet. Any help or advice?? I’m going crazy.

I get so cross with these pointless empty diagnoses … what’s the point of telling you you have this when they well know there is no known cause for this and no known cure? I wish doctors would just say “I don’t know what’s causing you these symptoms” instead of dressing it up in fancy words.

I hate to break it to you, but the sophistication of ENT medicine is a big disappointment. It’s basically full of diagnoses that are arrived at purely by correlation with your listed symptoms. It seems to me they basically have a name of something that corresponds to the set of symptoms you have but little in the way of effective remedies apart from symptom masking/managment. Most of the surgical procedures on offer only do damage (e.g. “well if you ear doesn’t work anymore we can cut the nerve?”)
/rant over.

I have all the symptoms you describe and have been diagnosed with a perilymph fistula and secondary hydrops. This is the only diagnosis which has made sense to me (I have had others including ‘MAV’). A leak from your inner ear will cause the sensations you describe. It can also give you migraines. I’ve been lucky though - its getting better and better over the course of 2 years and 20mg of Amitriptyline has got me my life back.

Fistula’s are thought to heal spontaneously but it can take months or years as the wound is under a lot of variable pressure. Its a very unusual diagnosis, but I had clear trauma to the ear and the leakage is very clear to me, I can feel the sensation when its happening and often wake up with fluid in my middle ear. However, some think they may be a lot more common than many doctors would have you believe. The biggest controversy around them though is to do with surgical intervention. My doctor believes he has a 75% success rate, but Dr. Hain states that he believes ultimately 66% of surgical procedures fail. My conspiracy theory is most doctors don’t want to tell you you might have a fistula for fear you might ask for surgery which they believe to be unreliable.

I would try out more of the ‘MAV’ meds to see if they help symptoms.

Also, be careful not to increase head pressure - do not bend over so that your head is lower than your waist, shower upright, do not prevent yourself sneazing (let the pressure out), sleep with two pillows if you can. Over a few months you may find that helps you as it will decrease the pressure on any wound if there is one … if there isn’t a wound and its not a fistula no harm done.

Get more opinions!

Thank you for your response! May I ask what tests were done that led the doctors to diagnose you with perilyph fistula? I have had my ears checked through a hearing test and the doctors think my ears look great. I have also had an MRI and they can’t detect much from that either. I think that’s why they came to the MAV conclusion but I’m not 100% convinced yet. Please let me know what tests you’ve had done. Thank you :slight_smile:

There is no definitive test (yet), it was mainly because of how my problems started and my description of my symptoms and how I responded to drugs. I have two obvious signs - fluid in my ear that collects overnight and drains as I get up out of bed and increased dizziness if I crouch on my haunches that can last up to a day.

Japan is currently working on a test which has just had its first clinical trial. This may have a huge impact once it starts to be rolled out.

In any case, the management is identical the MAV though there is the surgical option if your hearing is deteriorating (mine doesn’t seem to be). If anything, my symptoms are improving (as I suspect my fistula is closing).

Ahh ok that is interesting to know. I’m am glad that you are starting to feel better!

Me too!! But unfortunately relapses (as you have discovered) are many, so its very hard to know if you are improving for good!

Yea absolutely! I am hoping to feel well soon too. Hoping that the medication will start to improve the condition that I’m going through.

Some on this board are on more than one med, but I stuck to Amitriptyline @20mg because I wanted to limit what I took as much as possible. Once I got most of my life back I accepted break-through symptoms and just got on with things.

Here’s Dr. Hain’s page on MAV, the flowchart of meds to try at the bottom is particularly helpful:


Oh thank you that is super helpful! May I ask how long you were taking amitrptyline before you started to feel better? I have been taking it for ten days but havnt noticed much improvement. In fact I feel worse than I did a few months ago but I don’t know if the drug is causing that or not. I know that sometimes it takes a while to build up in the system. I’m just at a loss for why I’m having less good days. It’s very discouraging.

I had pretty nasty symptoms - hallucinating the ground was rocking side to side for example - this stopped after just 4 days on amitriptyline. After going to 20mg after a month most of the dizziness had disappeared. 20mg is where I stayed. Others may need more, as may you, there is a personal optimum.

Ok. Yea I am shooting for a month of trying amitrityline to see how it goes. I’m hoping for the best! Thank you for all of your thoughts.

Good luck!

Hello Camille;

My name is Jocelyn and I have read your plea. You have almost the exact same symptoms I have. I have vertigo all the time but worse with migraines. I have been diagnosed with vestibular migraines. It has been a line theee years. The doctors had it under control for awhile. It’s been a year now that I have not driven. My vertigo has gotten worse to whet I go the UW university Hospital. I’m on Verapimil er and anytriptline along with magnesium and othe vitamins. I have given up coffee and wine. I stopped the gym and just do yoga at home. I have done massage therapy it does help me a lot. I use essential oils to help with nausea and my head. I have a lot of support at home. Luckily it went bad right after I completed my second college degree. Frustrating I can’t start a job in my field of study. I’m still at my job of 15 years. I would say talk to your boyfriend either he is in or out. I even have support at my job. Thank god being I miss work. I also use a Laticane cream on my neck to numb my nerves. So pretty much my migraines make my vertigo. And my vertigo never stops. I have done the ear tests and every MRI I could do with dyes and ect. I also was just out in Gabapentin for pain. I go next week for injections in my neck. This chat room helps. I felt as if I was alone. I do still drink green tea and matcha green tea. I’m a Starbucks junkie. I know it has caffeine but I have given up so much already. You are not alone and I know it’s been scary. I hate going through this I feel so weak needing help so much. I have had depression with this, but who wouldn’t. Just be open and honest with your boyfriend and hopefully you get the support you need in return. You can text me anytime.ps I’m on 50mg of Amitrypline and 120mg of Vermapil ER both for my dizziness.

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Hello Jocelyn,

Thank you for your response. I am still very confused at this moment. I am wondering if headache/migraine is my diagnosis at all since what I have been trying hasn’t really been doing much. Recently I’ve been having a harder time visually and thinks just look so weird when I’m out and about. It’s hard to focus sometimes. I’m on amitritlyne 20mg right now and also taking vitamin D and magnesium daily. As far as my boyfriend, I don’t want to get rid of him. He is very supportive and I feel very calm and hopeful when I am with him, but when I’m away from him I think too much. Sometimes I theorize that I made myself sick like this by thinking too much because when I got together with him I was afraid of being in a serious relashionship. But it’s nothing to do with him. I just need help and wish I felt good honestly. I’m not sure what to do in this moment, I just feel very strange. It’s very scary. I appreciate your support and guidance.

Also, I don’t get migraines/never had one but I get mild headaches quite frequently if that helps with anything.

MAV is a scary condition, and confusing and working on one’s nerves of its own accord. (There are “physical” explanations for this effect.) One can get serious paranoid just caused by the MAV, if you let it make you paranoid.

So please do not take all of the scaredness, or the angst and or the nervousness you tend to feel, too “serious” (as in: trying tot find external explanations or other causes for it).
Set at least half of it aside as being caused by MAV and hence risking to get one into an endless or self-perpetuating cycle of scares/angst/nervousness.

But stress, in this case you mention your fear related to the serious relation you stepped into (which i recognise very much myself), is a trigger for MAV. And should be carefully “managed” in our cases. So yes, your stress related to your relation, may very well play a role, enhance symptoms. But from what you describe i’d say it doesn’t sound as if it would be the cause. Really, i would say: be carefull there in not getting all confused and freaking out yourself.

A trigger is not a (the) cause.
And triggers need to be “managed”. So please take good care of your relation and of your own personal fears related to such intimate bonding. Besides taking good care of your health MAV-wise…

Goodluck to you!

Thank you for your input, lijne! I appreciate it. I have a few questions for you? One, do you have any suggestions for managing stress or personal fears, especially regarding my telashionship? I know you said you could relate some? Also, do you have any tips for how to feel better in general? Any advice or personal stories would be great! Thank you.

Hi Camille,

Regarding the tips to feel better: i swear by the Survivsl Guide on this site. It helped me majorly. Do read it and try every step of it. Keep in mind you are building structurally for better and steadier results in the long run, and not skipping bits while looking for quick fixes.

Regarding your personal fears and stress re relationships, i would say try therapy. But try one that is not-endles-talking. Possibly, if it is for you, try something more like hapto-therapy, or maybe even emotionally focused therapy (which i am doing now and huge leaps forward! :slight_smile: ), or if there is a huge thing underlying the fears which will show up in the earlier mentioned steps, them maybe try something like “somatic experiencing” (overcoming trauma)…
I hope you will be able to find your own road out of the mists with this, and that some of these suggestions may be helpfull. bows

Hello again lijne,
Thank you for your help. I think I have read the survival guide. It was dated back to 2014 but I could relate to it a lot. Especially since I am trying to figure out if Mav is what I really have. Also I agree with you regarding therapy! I was thinking something along the lines of Cognitive behavioral therapy or something like that but I agree that it needs to be more than talk therapy. I need to look into the other therapies you’ve talked about. Never heard of them. Your input is very insightful and it is really nice to hear from someone that has had some of the same fears.