OK, so I just god back from seeing my Neurologist again and things didn’t go as well as I was hoping… BUT, on the other hand, I also wonder if some of what he said made some sense. Sorry, this is a long one, but I have a lot on my mind. This could also be helpful in the long run for a lot of people on this forum.

First, a little insight as to where I currently stand:

I am coming up on my third year anniversary of my mystery illness. It started with quick spins, imbalance, heavy head and brain fog (DX’d with VN). 1 year later, more visual type symptoms began. Floaters, photosensitivity, Scheerer’s phenomenon, afterimages, ghosting, etc.

Here I am, three years of living in hell. I have seen every type of doctor and specialist around. I have tried many diets, medications and supplements. Nothing has helped.

Mostly due to this site and my own research, I have concluded that I have a complicated migraine problem and the constant visuals are something called Persistent Migraine Aura. After using no medication for a year, I finally gave in about a year ago and jumped back on the medicine train. I am currently on 30mgs Celexa and 100mgs Topamax. I have been on the Celexa for a year now and at 100mgs of Topamax for 2.5 months. These have not cleared up my visuals or cognitive problems.

So that brings me to today. I went in to the Neurologist office hoping that the doctor would be up for trying out some new medications or a whole new plan. Instead, he turned the tables on me and asked me how my life was. Right away I put my head down and started to tear up. I told him that I was afraid of this question. When he asked why, I explained to him how I feared that doctors would blame my condition on anxiety. I told him that everything I was experiencing was real, and that yes, I obviously am anxious and depressed, but it’s because my whole world has completely changed the last three years. I told him that every time I walk outside my photophobia hits me so strong that fear instantly hits me. I cannot escape it. I explained that I was 100% healthy and anxiety free the days and weeks before I randomly started having dizzy spells and brain fog. I told him that even now everything in my life is perfect except my health. I haven’t felt normal in 3 years and it’s not all because of anxiety.

That’s when he explained it to me like this, and I know we have all discussed this before. It’s the cycle. I met him half way and told him that yes, I obviously have anxiety now with dealing with this. That’s when he explained that because of this cycle of always being anxious about my condition and symptoms, that I cannot heal. My anxiety is acting as my trigger, never allowing myself to heal. In order to heal the migraine problem, I need to first get the anxiety under control.

So, moving forward, as far as medications go, he didn’t seem to open (or knowledgeable) about trying or using anything else other than Topamax. He was weary about going up higher, but decided to try me on 150mgs moving forward and sticking on the 30mgs of Celexa. He also said he would find me a Psychiatrist to help me deal with the anxiety. I was very up front with him about my worries concerning a Psychiatrist. I explained that I was nervous they would think that this was all in my head and blame it all on anxiety or depression and think that I am simply searching the web and DXing myself. He promised this wouldn’t happen. Perhaps I can have him write a note to the Psych ahead of time to back my story up. Either way, I am not totally against this, since I was already planning on seeing a Psychiatrist since I know my anxiety is horrible in dealing with this stuff plus I don’t mind having someone who knows about medication dealing with all my meds. Plus, if it’s someone who ACTUALLY believes my condition, it would be nice to talk with someone.

Now I have some questions for the forum:

Is there some truth to his logic, or is he blowing me off? Does he believe me? I have read before about getting anxiety under control before treating migraines.

If there is some truth to his logic, is that why some anti anxiety drugs “cure” MAV?

Has anyone found help from Psychiatrists and anti anxiety meds alone? Can I do this without a so called migraine specialist? (something I doubt I will find on my insurance)

If you notice, my tone is very 50/50 after today’s visit. I do feel that the doctor was sincere. I also feel that he is not a specialist. I do believe him when he tells me “I have to let things go”, something I have not been able to do since I first developed this shit. The same thing with all of these visual problems I’ve had for 2 years now. Since that first floater I saw, I have not been able to stop focusing on my vision, looking for floaters, examining everything in my site, all along finding more and more problems. If I was able to just chill out and let it go, could I allow my body to heal? If I stopped checking in to how I felt every other minute, could I learn to forget? Or maybe I will just continue for the next few years, searching and searching for doctors, never finding an answer and continuing to drive myself crazy and more sick? OR, was this doctor just another quack?

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What other meds have you tried besides topamax and celexa?

What does he mean by you can “heal” migraine if you get rid of stress? I see other people on this forum using the word “heal” regarding MAV and I don’t understand it- MAV is not like a bruise that can heal up…it is a you can chronic disorder that you can control with medication and diet.

As far as the anxiety contributing to the symptoms- I honestly don’t know. I am a constant anxious mess and have been for the 2.5 years that I have been dealing with this. I don’t think I have actually full relaxed in 2.5 years- that is pretty insane. In the past SSRI’s have helped me with anxiety pre-MAV- however now they just make my symptoms 50 times worse so I can’t take them…haven’t found anything else that truly helps my anxiety. So I don’t know what the connection is…but I don’t think getting rid of anxiety is the total solution to this problem.

I wonder why your neuro wouldn’t try you on any other meds- what ones has he put you on before? I would definitely encourage you to see a psychiatrist- they can prescribe meds that might help with both your anxiety and the MAV. I agree the key is to find one that believes that you have a physical problem- my first one was a total BITCH (excuse my language) and tried to convince me every single visit that this problem was entirely anxiety- plus she was condescending about it- ugh- so hopefully you will find a good one who won’t do this to you. Good luck and hope you find some good meds soon!

The only other drug I gave ample time to was Nori. After 9 months on that all the visual problems started for me. Not sure how the two relate…

When I said “heal” the migraine, he didn’t mean it as healing a bruise or broken bone, he meant in order for me to start noticing a change for the better, I needed to clear my head from anxiety. From what I understand, he meant that if I am always stressed and anxious about my health and condition, that I will never be able to actually feel myself getting better.

Like you, since this all started, I have been an anxious mess. How can I not be? I walk outside and due to the photophobia and brain fog, I can’t think straight and begin to panic. I’m not anxious about my work or home life, I’m anxious because I don’t know what the hell is wrong with me. I can’t think straight. I walk outside and I see things flying everywhere in the sky. How the hell am I supposed to stay calm? But at the same time, I can understand how something like that can continuously “trigger” migraine activity daily. If I was able to just walk outside and not thin or worry about how bright it was, could I break the cycle? I don’t know…

For me on the other hand, I don’t seem to react negatively to medications while on them. However, as I mentioned earlier, when I came off the Nori, I started to get all these visual problems. That of course could just be a BIG coincidence…

I think the reason this Neuro didn’t try another med is because he is not a “specialist”. That’s why most doctors start with Topamax. That is the go to. I had a list of suggestions, but I think most doctors hate when patients come in and suggest drugs. I pray that whatever Psych I end up with is open and most of all believes that what I have is a physical problem and not caused by anxiety. Then, if they are open, I can make some suggestions about drugs.

Seeing a psychiatrist might be a good thing. They can help you develop some coping mechanisms to deal with your illness. As for thinking “it’s all in your head” I would not worry about it, people with more “objective” illnesses like cancer or heart conditions, are often referred to psychologists or psychiatrists. Living/coping with a chronic condition changes your life and sometimes you need an outside source to put things into perspective (they can be good to vent to at least, haha). Just think of it as another arsenal in your “army” to fight this. It doesn’t mean your illness is not real it just means you need a bit of extra help dealing with it. I know I often feel the same way, ie. no MAV (or whatever the stupid disorder I have is) = no anxiety, but maybe we need to try as hard as we can to deal with our anxiety which would help us fight MAV in the long run. I know its easier said than done, i havent slept well in 10 years (my MAV was triggered by a bppv attack that i woke up to, and this has happened a handful of times over the years, which means im scared to go to sleep, which is part of my problem, so i do get it). Good luck! :smiley:

Yes,I agree, anxiety can cause a ‘cycle’ of stress & ramp it up but don’t see how it can really be controlled without meds unless maybe you are a ‘guru’. I saw a psychologist when I was really dizzy & yes, the meditation did help calm my body & brain but it didn’t last long! It was useful to do at the times when I was super-stressed but really the only thing that lasted for more than five minutes was Ativan. You say you have seen a neurologists- is he an expert in diagnosing & treating Vestibular Migraine? Only when I began taken Dothep & things calmed down my stress/anxiety levels began to drop. Now, although I get dizzyiness/disequilibrium that may last all day it’s not 24/7 as it was prior to the meds and I can cope with it OK.
I’ve never heard that anti-anxiety meds can cure VM - if they did we’d all be on them!! And what does he mean that controlling the anxiety will heal the VM ? This statement doesn’t sound as though he actually knows what chronic vestibular migraine is!!! (following Scott’s request that we now use term Vestibular Migraine & not MAV).
I’m sure it wouldn’t hurt to see the psychiatrist, keeping an open mind. He may have something useful to offer. It seems the floaters are a major problem for some & not easily dealt with even.
Good luck with your search.

HI. I never had any anxiety before I got hit with this stuff and I would wake up trembling internally every morning for months on end. The days were a blur of feeling the fight or flight feelings where I couldn’t eat, sleep or enjoy life. It was the most awful feeling. I would much rather be dizzy or have a headache than the godawful anxiety. Other than my health, which I at first worried was something terrible, there was NOTHING to be anxious about. I saw a psychiatrist and he was helpful in the sense that he listened and was empathetic, butI really believe it was physiological. I also know that I was a super sleuth…reading EVERYTHING about migraine and meds etc…which is how I got the reputation on here as the go to person for med questions lol…everyone has their strong suit. So really it comes from low serotonin…migraine…anxiety…ruminating thoughts…replaying and worrying etc…insomnia…once I got my meds right, I don’t have those problems anymore. I’m not lurking into every thread on the internet…I’m not obsessing…my fight or flight has flown, so to speak. But trust me…I used to spend 8 hours or more on the web searching for the answers to WHY…how did this happen to me? It didn’t make sense…it really still doesn’t, but I don’t have a lot of choice other than accept it.
Celexa is good for anxiety, but Paxil is usually even better. I might consider switching if I were you…(I take Cymbalta, which is similar to Effexor, and those two meds are good for anxiety as well).
Best to you…

My take on anxiety and VM is that VM causes anxiety and not the other way round. Possibly your neurologist does not really know at this point what is causing your symptoms and because Topamax is not really doing that much for you, he is looking at other possible angles of dealing with the problem. He is probably wanting to see if doing something about your anxiety will have any impact on your symptoms mainly because he is not sure what else to suggest. I don’t think it can hurt to see a psychiatrist. I believe we all need coping strategies and perhaps learning to think about the illness in a different way may be beneficial however I strongly believe that symptoms such as you describe are physical, are very real and are not caused by anxiety. I feel that if the symptoms disappeared so too would your anxiety. I say this based on my own experience because I know that even if I am 100% relaxed my symptoms are there and can be bad and equally during times of stress my actual dizziness etc has not got worse. I have studied this every day for nearly 4 years with myself and I just don’t see how anxiety would cause symptoms like this. I believe chronic stress and anxiety can lead to a person being susceptible to illness and their immune system will weaken but there is no way anxiety can make someone feel these weird things we feel on such a constant long-term basis x

Hey phoenix,

Sorry I haven’t replied to your emails from about a month or so back. And sorry to hear you’re still not out of the shit with this junk.

I think the specialist is definitely not blowing you off and that he is most probably correct. While VM by its very nature does create physiological anxiety – no question – there is also an element of our own freaking out that can exacerbate the hell out of this. And you readily admit that you are reacting to it each and every day when the photophobia strikes. I’d definitely be looking at some new ways to deal with the anxiety such as meditation or something where you really work on how you’re reacting. I know when I get even remotely anxious, this thing goes nuts very quickly. I’m sure many would attest to the fact that when even on meds, anxiety can derail this whole thing quite easily. The thing with VM is that you have to accept it. That doesn’t mean give up. The bizarre thing is that when you accept it, the anxiety goes and then you feel better because threshold rises. Seems counter-intuitive but that’s how it panned out for me. Think that’s the key for you at the moment.

This appears in the new diagnostic criteria:

Anxiety and depression may cause dizziness and likewise complicate a vestibular disorder. Anxiety-related dizziness is characterized by situational provocation, intense autonomic activation, catastrophic thinking and avoidance behaviour. More than 50% of patients with vestibular migraine have comorbid psychiatric disorders.

S 8)

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This interest you Phoenix?

I think Scott makes some great points. Also, just as an aside, I find that it’s crucial to deal with the anxiety. Yes, I know high anxiety me is one to talk, but Now that ive been hit so hard with this again i figure its time to do something about anxiety and im starting to meditate, eat well, deep breathing - its not easy (and honestly I haven’t really felt any results yet but I’m sticking with it) but at least there are things you can try. I know you probably are shaking your head, I used to roll my eyes -“don’t try to sell me this new age crap, cure my physical symptoms and i won’t have anxiety”- but having lived with this for ten years and having undergone chiari malformation surgery, I need to tell you that the anxiety did not go away for me even when my symptoms lessened (over the past 5 years or so they’ve flared but have been quite manageable - I worked, participated in all activities, travelled, gardened (one garden is 1 acre big), went back to school, etc., basically lived a normal life, BUT always on my mind I kept thinking- “will this be my last good day? Will I wake up with spins? How can I sit through this when I feel like I’m moving? Can I do this or that, will it make me dizzy?” it was always on my mind, having this problem changed me unfortunately, and I can’t rewind to how free I felt before getting hit with this (oh I can barely remember those days, haha). But, there are steps to be taken to help deal with the anxiety. Take care and let me know what happens.

Good points Ellen,

Separating anxiety and VM is really quite difficult and in many ways is one of the fascinating aspects of this affliction. For me what happened after a period of years is that I was mostly able to understand when the anxiety was from VM alone and when it was actually my own mind bringing it on. I’ve heard many here and met people who just knew that they weren’t an anxiety case per se but that it was stemming from the vestibular assault. When I was first annihilated by vestibular neuritis, I was catapulted into severe anxiety literally overnight. It was the most horrific thing I’ve ever been through – like surviving a plane crash!

A recent example I had was when I was an aspirin junkie. Last winter in Sydney and for months before I was taking daily pain killers and feeling very bad. But I didn’t realise it was the aspirin for quite some time. I thought the migraine had transformed from a dental appt and an injection then from late Feb. in those months I had some new anxiety going on, especially at night, waking all the time with mild heart palps. So I saw Granot months later, he and I agreed aspirin was doing me in but he also said you are anxious. I knew I was and thought to myself “maybe work is winding me up”. I wasn’t clear. So I got off the aspirin and BOOM, anxiety vanished within about 4 days. Point is it can still trick me even coming up on the big 10 year mark. Hard to believe I am STILL learning about this.

Phoenix, look for a program running in LA called mindfulness meditation. It’s a type of meditation that was developed through a Massachusetts university decades ago. It’s evidence based and not new age nonsense like so much of the stuff out there can be. It will really help you to get a grip on the way you react to everything and have greater control to let go.

This looks like the goods, all happening through UCLA.


Thanks Scott ur explanation makes a lot of sense. I frequently have times where my symptoms intensify and I get incredibly anxious as a result…I guess massive exacerbating the situation. I agree it is so difficult to separate the anxiety element from the physiological element. Dr s told me that the neurological pathways that flow through the brain stem and control balance share neurones with the fight or flight centre so in some ways the wiring of our brains means the 2 issues are intrinsically linked…we cannot help the panic as the lack of balance control triggers our instinctive panic reaction. How did u get a handle on the anxiety Scott? Tips gratefully received. Xx

VM patients unsurprisingly score high.

A very interesting thread which probably more or less pre-dates the acknowledgement of PPPD.

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Yeah I think that’s super likely.

Something I have only very recently found applies to me. By my current way of thinking there is no distinct cut off points between the two conditions if that’s the case. I know my VM was not originally caused by anxiety or any other emotional involvement. However the last few weeks I have become increasingly convinced anxiety could well be what is now ‘stopping it healing much in the same way as the neurologist explained to @awalkerphoenix. What I find surprising is that I went through all the worst of my VM symptoms most particularly the extreme photophobia four/five years ago but the anxiety has only recently surfaced recently. I am thinking the prolonged vestibular attack I had which started on Boxing Day proved so much more severe than I would ever have imagined could happen after no major attacks for five years on meds and the result is some sort of PTSD.

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