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Help please...photophobia and more

Hello All,

This is my first post, so apologies for its lengthy length. I have been struggling with some horrible symptoms for 6 months now and still don’t have a diagnosis after the standard ENT & Neurologist assessments, some mild evidence in balance tests, negative MRI and good hearing tests. I suspect I have Vestibular Migraine, but I also have become so worried about scary illnesses like vCJD or Epilepsy as I am no closer to discovering the cause. Maybe some of you more experienced sufferers and experts could give me your opinion on my symptoms - if you have heard of, can relate to or experienced these with your migraines. Thanks in advance. Here I go…

It started with feeling 6 months ago that I was constantly drunk (without the fun part), couldn’t walk without feeling like head was being pulled to the left, had a couple of spinning room episodes, really heavy head feeling. These subsided after about 3 months and felt ok for about 4 weeks, but then the following has developed and I have been feeling like this ever since:

  1. Extreme photophobia to any artificial light - computer screens, iPhones, TV’s, fluorescent lights, whatever - triggering multiple episodes on a daily basis including the following on exposure to the light:
    Instant feeling of dread like something really bad is about to happen, including sweating, adrenaline rush, palpitations, flushed and butterflies in stomach
    Feeling of head being pulled in different directions with force
    Pressure instantly building up inside skull, jaws and ears after exposure to light
    Internal motion like waves running through my body side to side
    Very subtle burning or stinging feeling inside skull
    Prickling/tingling feelings starting at back of head and moving around face, arms and legs
    Hands and legs not functioning properly - stiff, slow movements, with a feeling like the nerves that control them are numb or dead
    Arms and legs not feeling like they are a part of me anymore
    Feeling emotionally very strange and almost like whole body is disconnected from the world
    Feeling like the muscles inside my throat and neck are shifting position and are tightening involuntarily
    Nauseous and feeling like I could faint

  2. When lying down with eyes closed it is almost like my body loses its reference point in space - my arms and legs feel like they are floating around in all different directions, stopping me from being able to fall asleep each night

  3. Sometimes feeling like I am walking on a rocking boat

  4. If I stare at something it appears to move slowly - usually patterns on floors

  5. In low light I have one pupil significantly smaller than the other

  6. Twitching muscles at the same places during one of my many daily attacks, some pain in muscles, and feeling really jumpy and easily startled

  7. My left forearm aches for hours at a time

  8. Major anxiety and fear being caused by the symptoms - not causing them, as the Neurologist keeps trying to peddle

Any ideas - does this sound like VM to you, or something else? I am a 37-year old male and this illness has brought me to my knees, to the point where I cry regularly pleading with it to stop.

Thank you all in advance and I hope you are not suffering too much today. Reading all your stories makes me feel better about how I feel.

Ant.

Hi Ant, I do expect that your symptoms are vestibular migraine as quite a few of your symptoms (rocking boat, internal motion, jaw pressure etc) are similar to mine and I’ve been diagnosed by a good neuro-otologist. First of all try not to worry about having some other illness- your symptoms don’t sound like epilepsy and personally I’ve never come across someone on these forums who has had these symptoms only to realise later that they have something worse than MAV. Secondly, it sounds like you are in a state of constant anxiety (I’ve been there) and although this is DEFINITELY not the cause of your problems, it will only make the symptoms worse. The issues you describe such as feeling disconnected from the world, twitching muscles etc are things I can relate to and things which I rarely experience now since my anxiety has greatly lessened. I have learnt to adapt to the dizziness and to not be scared by it, and how to distract myself from it. But I was only able to do this once I had the stability of a firm diagnosis and a treatment plan, so I think this should be the next step for you. ENT’s rarely seem to be of help with this and knowledge of MAV varies from neurologist to neurologist, so if possible try and get an appointment with your nearest neuro-otologist, otherwise bring some information about MAV to your doctor. Remember that MAV is treatable and the majority gain control over this illness, living symptom free for long periods of time, and whilst it may feel like you are stuck like this forever this is very unlikely to be the case.

I would say that 98% of those symptoms are MAV and I expect the other 2% is, I just don’t know about them.

Apart from 5 I’ve had pretty much all of those symptoms, however the consultants I have seen have a difference of opinion as to whether I have VM/tension headache/anxiety.
Fortunately the first one diagnosed migraine so it got me started on the meds which is the key really in getting better.

Hi all again.

Thank you so much for taking the time to read my post and reply so quickly. After reading your comments I do feel reassured more that I may now be on the right path to getting a correct diagnosis and finding the right therapy to make normal daily life possible again. :slight_smile:

Are you able to tell me how long you have been having symptoms and if they have changed over time? It would be good to know what this thing is capable of so I can be ready for it and not keep panicking when I don’t feel better. I have tried Amitriptyline and Cipralex with not much effect - perhaps the dosages were’t high enough, but I think I had a bad reaction to Cipralex as it sent my anxiety and panic through the roof, and I am still having withdrawal symptoms 3 weeks after stopping it from only 10mg/day for a month.

I have an appointment with a vestibular specialist coming up in a week and hope to get a firm diagnosis and some advice on how to minimise the symptoms. If I learn anything I will be sure to share it on the forum.

Hi,

Just an update on my condition if anyone else shares the same symptoms. I have extensive vestibular testing (rotational chair, caloric test etc) and discovered I have 31% loss of function on the left side of vestibular system. This is most likely the result of a middle ear infection at some point in the last few years. I have also been diagnosed by the same specialist with migraine, based on my symptoms and family history of migraine.

So there you have it. Scientific proof my anxiety was not causing all my problems. As my migraine symptoms are constantly changing, having a diagnosis doesn’t help that much in not freaking out as the symptoms are always so strange and new. Nonetheless I can get some VRT and think about migraine diets and other treatments to reduce the symptoms.

Ant.

Photophobia. Having suffered extreme constant 24/7 photophobia for several years since chronic MAV kicked in, later almost totally controlled by preventatives, I’d never experienced the reaction affecting my jaws until after a physiotherapist stimulated the Trigmenial nerve a couple of months ago which brought on a full vestibular attack which lasted eleven days. . It seems her treatment has opened up fresh pathways for stimulation. Hardly an improvement. Interestingly it seems exposing myself to very bright winter sunshine seems to have caused the reaction yo start in the lower jaw rather than the head or eyes as previously. Although an old post it was interesting to find a fellow sufferer. The reactions once stimulated seem to hold no bounds and have little correlation to the trigger stimulus.

The symptoms you describe certainly resonate with me. Especially the feeling of dread, anxiety and depersonalization when an attack is happening. The feeling of being drunk, spinning room episodes, and heavy head feeling. Hit the nail on the head with most of what you described. Also, you are correct in saying the anxiety is caused by the migraine, and not the other way around.

You are on the right path exploring treatment options with a neurologist. We have very similar symptoms and I can say my migraines are 75% controlled over the past 8 years. The first 6 months to a year was really hard, but things will get better with the right treatment! I’m so sorry to hear you are going through this though. I know how difficult it can be when it feels like your whole life has been turned upside down (literally!).

What worked for me was Nortiptyline 25mg daily, Ativan 1mg when an episode happens (really helps with the anxiety as well) and avoiding my food/enviromental triggers as much as possible. And elimination diet is a good thing to do to see if any of the foods you are eating are contributing. Also consider environmental factors like aerosol sprays, strong scents (perfume, paint, chemicals… etc.) florescent lighting etc. I was working at a hair salon when my migraines started and the hairspray was a big contributor.

I see that your post was written quite a while ago, so I hope you have had some success in your treatments.