Disability · Migraine

Neurological Nightmare: Part 4

This is a continuation of parts 1, 2, and 3. If you’ve not read them, I recommend doing so, before reading this.

After the neurologist appointment, I was extremely upset. I felt as if I hadn’t been taken seriously, and I very much suspected that the doctor just thought I was an emotional female, whose problems were not his concern.

It was overwhelmingly frustrating as I had waited a couple of months, disabled and in pain, to be treated this way.

I did my research on Functional Neurological Disorder and realised it was a diagnosis of exclusion. You cannot diagnose someone with it unless you have ruled out other disorders or illnesses causing the symptoms.

Quickly, I was very glad that I stood up to the neurologist and got him to agree to recommend that I try a migraine medication. I had been simply on pain medication, and although the hospital neurologist said I had complex migraines, I hadn’t been treated for them properly.

As I saw the neurologist at a hospital clinic with no pharmacy, and in the UK, hospital prescriptions must be filled at hospital pharmacies, he instead included the prescription recommendation in his letter to my GP.

A couple weeks later, I saw my GP and sorted out a prescription for my migraine medication.

I slowly upped it, as per the instructions, and after several weeks was at the level that the neurologist prescribed.

I still had horrible headaches, balance issues, and felt awful. But… My daily headaches weren’t quite as bad and I felt a bit different.

In doing a bit more research, I found out that the dose the neurologist prescribed was half of the usual prescribed dose. I saw the GP and they said they were surprised that was the highest dose given as they considered it to be subclinical, or too low to be effective.

I was honestly quite angry because this was the same dose that the neurologist told me that I’d have to go into therapy when it didn’t work. It seems very much like he was setting me up to fail.

The other option is that he is just a very bad, very ignorant doctor.

So now, with the blessing of my GP, I have upped my dose.

In the past week, since being on the highest dose my GP has agreed to (for now), I have had only a couple migraines. The last one being enough days ago that today I have been able to walk around the flat without my walker.

Going enough days between migraines has allowed my balance to recover enough that I felt confident today to not use my trusty walker to get around. I’m not exactly ready to walk on a balance beam anytime soon, but I haven’t fallen over (yet lol)!

At this stage, I feel like it’s pretty obvious that my balance issues are caused by my migraines and that my possible thyroid issues (discussed here) could explain some of my other random symptoms.

If I hadn’t insisted that the neurologist deal with my migraines, then I’d still be in constant pain and always relying on my walker.

I’d also be questioning myself and my own mental health, instead of trusting myself to know that something is wrong.

So as I go on, I may still yet adjust my dose of migraine medication, or explore other treatment options. I’m sure I will still need to use my walker part-time, when my migraines hit, however, for now, I am very happy to have reduced them as much as I have.


8 thoughts on “Neurological Nightmare: Part 4

  1. Wow, I’m just finding your blog now. What a story. Good for you to advocate for yourself. I’m going to follow your blog. Hope you feel much better! 🙂 ❤

    Liked by 1 person

  2. I can’t believe the attitude of the neurologist….well i can….wish i didn’t believe it….So pleased you stood up to him…but for him to do a subclinical dose…is just crazy…I do hope they do ease for you xx


    1. Yes… it was a really difficult appointment and such a frustrating experience.

      I’m now almost on double the dose the neurologist put me on originally (my gp gave me the ok) and I’ve reduced my migraines from almost daily to about 1 a week. I’m hoping that will reduce further as I go up to the final dose.

      Liked by 1 person

      1. oh thats great….that they are reducing as you up it. I was on eplium 2 years ago due to pains in my head. Like migraines …my neurologist started me on a low dose and i increased it to the maximum dose and then stayed on that for about 3 months…then he got me to gradually reduce it…overall i was on it for about 9 months…whatever it did it reset the brain and the pain…If i feel the start of one now..I take 3 disprin then in 30 mins if still hurting i take another 3…havnt had to do this for a while..touch wood….that was my neuro who said to do this…

        Liked by 1 person

      2. Not yet. He wrote a letter to another to try and help me skip the usual referral process but I’ve heard nothing. I’m going to ask my gp to help sort me out soon though. She was willing to up my meds so I wasn’t in a hurry to see another neurologist again. I do know that, long term, I do need to get one sorted though.

        Liked by 1 person

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