Varying neurological, vestibular, and psychiatric symptoms that seem to stem from headache

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I am a 25 male with no prior history of headaches or migraines. About a year ago (I can remember the exact day and what I was doing) I seemed to began having a daily tension-type headache with brain fog / loss of clarity, lightheadedness, and dizziness. As time went on the dynamic of the symptoms changed. Soon the 'headache' part became very mild or no headache at all and I had only vestibular symptoms - daily brain fog and aural fullness or clogged feeling in my ears, sensitivity to quick head movements and very occasional mild vertigo, earaches, and tinnitus.

I was first told it was anxiety and was given a regime to keep my anxiety under control. Although it did help in controlling the more severe symptoms, I still had daily brain fog, random dizziness and imbalance spells. I took an MRI and it came back completely fine. For 4-5 more months, it stayed like this and I could only cope and use mild sedatives to get through when it got bad. I also got an ECOG test done in suspicion it was Meniere's, but it seems fairly ruled out as my symptoms are daily and my hearing tests have come back perfect even when my dizziness etc. was bad.

 After searching for doctors one day I found an ENT that diagnosed me with vestibular migraines. It seemed to make a lot of sense and I thought I had finally found what was wrong; albeit I only had sensitivity to -very- loud sounds, and not in general nor any other distinctive migraine symptoms. He put me on Magnesium Oxide, Vitamin B2, and Coenzyme Q 10. After just a couple of days of taking them, I seemed to have a reaction and my symptoms went out of control and what was before mostly vestibular-only symptoms with brain fog became neurologic and migrainous. It put me into the ER with severe cognitive and focal dysfunction, tinging in my limbs, and cold hands/feet.

 

After finally recovering my symptoms have permanent changed and I almost completely no longer have those vestibular symptoms before, and now milder versions of what put me in the ER varying cognitive and/or memory dysfunction, limb and tingling issues, visual (and/or spacial) and mental focus issues and fatigue. It does not seem to be specifically a migraine or a tension-type headache, there seems to certainly be something neurological going on. I have taken a VNG and EEG that I will be getting the results of back soon, but none of this is making any sense.

I was once again told it was anxiety and my primary doctor put me on a generalized anxiety disorder medication that gave me a similar reaction that put me in the ER. I know very well now I don't have generalized anxiety, but rather panic disorder during flares of my symptoms. When my symptoms are under control - they're there and they may change but I'm mentally under control.

Very recently, I stumbled upon Myalgic Encephalomyelitis (ME or CFS). It seems to encompass a lot of my secondary and primary symptoms and could explain why the symptoms have changed so dramatically - including sensitivity to new medicine. However, my fatigue is not extreme nor does it get worse after everyday activity - I am generally functional and the fatigue is generally my limbs occasionally. I don't think this or the class of this type of disorder is it but it seemed to encompass so many of my symptoms.

Lastly, I've begun to look at New Daily Persistent Headache, as it too seems to encompass the complexity of my symptoms. It is very strange, however, that before I had *only* vestibular symptoms with some brain fog and now essentially neurological symptoms. As I continue to talk to neurologists I can only point out the similarity between my symptoms and ME and/or NDPH. I truly have no idea what this is. Anxiety does have a lot to do with but I have a regime can keep it under control even during flares and even then some days I wake up worse than others.

This has been a long battle but I have seen signs of relief and I know I can win. I just need any sort of clue. I am completely unsure if it's my living conditions which I have had thoroughly cleaned, or a new allergy, or something I'm eating. I've had blood work done and only my vitamin D seemed to be low, which I'm on supplements for now. I will ask my doctor again about iron. If someone could provide any insight or information I would be very appreciative.

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2 Replies

  • Posted

    I am so sorry that your dealing with all of this pain and frustration! It is a miserable experience, I know. Have you tried prescription Vanatol for your headache pain? It is a fast acting liquid with; caffeine, acetaminophen, and butalbital that provides rapid pain relief. It does have a bit of alcohol in it that works as an anxiety reducer as well as helps the medication absorb quickly. I am a RN Pharmaceutical Rep. and work directly with the manufacturer. They offer a lifetime coupon which eliminates MOST or ALL of your prescription co-pay. My co-pay was $7 for a month supply and it got rid of my epidural headache. If you're interested in trying Vanatol please respond to me with your Physicians information and I will email you a pre-printed prescription for your MD to sign and fax. My pharmacy delivers your medication for free! All my best to you!

    Kellee smile

    • Posted

      Hi Kellee!

      Thank you so much for getting back to me. I'm a little worried taking a medicine with acetaminophen as I'd have to take it frequently. The headache pain is usually mild, and seem to be tension-type. What's difficult is some of the other symptoms that come with it; the 'brain fog', mild earaches / fullness, anxiety, and occasional muscle stiffness. I've tried sinusitis and migraine medication, it's difficult to tell where it's coming from. The anxiety / panic makes it worse.

      Thanks again!   

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