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Viral-brainstem Encephalitis and Topamax?

Good Day Guys,

I wanted to share my story of Topamax and Amitriptyline together, I was diagnosed with Viral Brainstem Meningitis -Encephalitis at 22 years old (2014), after traveling to Gabon (West-African Country). After taking Topamax 200mg daily for 2 years I was diagnosed with IIH (Idiopathic Intracranial Hypotension): as a result of the Topamax. However, I had two different Neurologists at this time and they prescribed Ultracet, and many other drugs to relieve the pressure around my brain.

Bearing in mind at this time I was completing my Bachelor Degree, and the side effects from Topamax were endless. I constantly had confusion, difficulty remembering information I had learned or studied, pins and needles, tiredness and drowsiness. It was a difficult time for me as I am aware you not either allowed to consume alcohol while on such a high dosage of Topamax (as suggested by my Neurologist). However, to make things worse I was now 25 years old lived most of my young 20’s on such strong drugs, I had also caught Shingles every year for some odd reason around the cold winter months.

At the age of 26 years old (2018) I started feeling better and decided to come off Topamax 200mg and Ultracet cold-turkey. I was eating healthy and exercising until 3 months later when I relapsed again into severe Migraines and was diagnosed again with Viral Brainstem Migraines- Encephalitis. All the doctors could suggest was that my MRI and lumbar puncture had revealed I had encephalitis. I sometimes feel hopeless with such a diagnosis, due to the medication that is prescribed. After consultation with yet another Neurologist and by this time I had a lumbar puncture yearly and MRI since 2014, I almost felt like a lab rat.

On questioning the Neurologist on whether having a lumbar puncture yearly was safe to my health he always nodded yes. I feel i struggle severely with my back and neck and i feel this is a result of so many lumbar punctures. By the last lumbar puncture i had to receive an epidural patch for the severe migraine from the last lumbar. (An epidural blood patch (EBP) is a procedure in which a small volume of autologous blood is injected into a patient’s epidural space to stop a leak of cerebrospinal fluid (CSF).

By 2018, my Neurologist had prescribed Topamax 200mg daily and Amitriptyline 10mg daily. However, I have read that these two drugs have severe interactions when taken together. Understanding they both preventative medications, I feel I have become a Zombie well into my 20’s. Having difficulty recalling names of people iv met, severe depression, anxiety, the worst night paralysis, night tremors, PCOS, hair loss and thinning. Iv never been able to be in a stable relationship due to my personality disorder from Topamax, which results in moodiness and depression.

Now presently, I decided to try weening off the medication for a better quality of life. Which left me with severe migraines and a feeling of cloudiness in my brain. As if I have flu in my head (if that makes sense). I live in South Africa, and have written to Johns Hopkins Medical University for a consultation, as I feel as though I have been wrongly diagnosed all these years.

I have questioned whether I might have an autoimmune deficiency, as I have read Shingles is a once off thing, and iv had now contracted it 4 times. As well as when winter comes around I almost need to hibernate, due to any cold weather triggering migraines and severe flu as a result of a low immune system (so iv been told). I do a full health check up every year and the results always come back clean, however, I feel i have more questions then answers.

Please any suggestions would greatly be appreciated.


Meggan Nortman

Wow Meggan, I’m so sorry you’ve had to go through all this. First prize in the suffering contest isn’t something any of us wants. I’m at a loss for how to help. I can offer love, sympathy and prayer.

And I can suggest you maybe try Botox. The meds destroy me too. I’ve had a lot of them. Botox is the least cruel so far and doesn’t aggravate my own PCOS.

1 Like

Hi and welcome. You really have been through the mill with this. A very conveluted journey indeed. Still you seem to have had plenty of medical intervention and with a consultation with John Hopkins still to come that should surely get you on the right path. We are only a support group not medics so not sure how we can help. You seem to have plotted a path forwards on your own pretty well.

From both my own experience and that of many others Misdiagnosis in very common with vestibular conditions such as MAV. Autoimmune conditions do seem to often coexist with MAV but that may just be because both are common anyway. As the symptoms have returned having quit the drugs sounds as if you could have unstable migraines so I guess John Hopkins will suggest appropriate treatment. There’s plenty out there apart from Topiramate.

Good luck with getting answers but don’t hold your breath. Most on here never get an definite diagnosis yet alone establish a root cause.

Btw it’s not usual practice to provide private email addresses. We have a nice anonymous Username system for a reason. Might I suggest you take that bit down. On. Second thoughts I did it for you. Save you the bother. Helen