NHS neurology appointment, told it's probably migraines?! Confused
 

My history: whiplash in December 2013 due to hair grab and shake assault, no cognitive issues after but I had terrible headaches and nausea.

A month later my car was rear ended and I got whiplash again and cognitive symptoms which are on going.


Symptoms: Light/ sound sensitivity, word finding problems, social problems (not getting jokes, being socially inappropriate such as not saying goodbye to people and just leaving),

clumsiness, slow processing/difficulty processing complex information, sleep problems, memory problems,

difficulty filtering out external stimuli, mixing up words/using incorrect versions of words, difficulty finding my way, concentration problems.


I've been to see the NHS neurologist for my first appointment, I'm not really sure what to make of it all.

I'm being sent for Neuropsych tests but she said she thinks it's migraines because I have light and sound sensitivity.

I have no other symptoms of migraines except these, I don't get headaches (I know there are migraines where you don't get these though) except when I'm overloaded or trying to understand something complex.

She said maybe migraines have been triggered by the accident.

I looked online and by definition migraines are attacks, so you should have periods where you're fine, but I always have light/sound sensitivity, it doesn't come in bouts.

Does anyone know anything about migraines possibly being triggered by an accident like this? I've googled it and came up with nothing.
They're putting me on migraine meds to see if that helps, I'm pretty sure it won't though.

She said the MRI would've shown if there was any damage as they're pretty sensitive (yes, I know, I'm tired of doctors saying this too).

I asked her about what the other neurologist said about concussion (that I couldn't have got a concussion from whiplash) and she said well, the actual definition of concussion is that you hit your head, so technically, if you didn't hit your head, you couldn't have got a concussion.

She said several times she's confident I'll get back to normal, as in fully fine, but I don't believe this.

I said to her that it had been nearly a year and I had had no improvement at all and if I was going to get better, how come there had been no improvement at all? She said yes that is unusual and didn't say anything else.

I'm finding it very hard to trust any doctors because everyone has been wrong so far. My friend and boyfriend said I should trust her because she is a specialist and the others weren't, but I can't cope with thinking I'm going to get better.

The only thing that has enabled me to cope is getting some closure by thinking I won't fully recover, as that's an end to this. Also, if I don't fully recover then my expectations will be met.

Believing I'll get better/somewhat better is an unknown quantity, as who knows how much or how long it will take, although I do believe I'll improve to an extent over time, just nothing like how I was before.

In July a GP told me he thought it was all psychological and I believed him and got excited because I thought, well now I can get fully better!

But I didn't and I was crushed and my depression is getting worse and worse.
I've been struggling to do laundry, bathe, eat, clean, anything.

I'm just stuck in this limbo still waiting for answers and I don't know what/who to trust.

It feels like they're just going to have to eliminate stuff one by one before they say they have no idea what's wrong.

My doctors told me the same things. I hit my head and hat all symptoms of a concussion in march this year, but my doctor says, that I have migraines, because concussions have only people who pass out for at least 10 minutes :confused2:

Just because the doctors don't know what we are going through and how we feel, they are not able to diagnose it correct.

Abbilee,

I know that sometimes doing the most basic of things( laundry, eating, baths etc) can be very difficult. I have had a hard time eating during my head injury and it can be difficult to take a shower and put on pants instead of sweats at times but it seems when I do it is like taking charge and telling life I am still the boss of some things in life.

Don't let the docs take your joy and keep looking if you can to find someone you can relate to, don't know if you are in a big enough area for that option.

I thnk it is important to acknowledge the small gains and victories as well...anything you can do to remind yourself you are not down for the count starts to add up.

I hope this does not sound like a rah rah post but it does seem to help me and I know it isn't easy to look for the positive as the negative is so much louder since my head was whacked but it is there.

Bud

Abbilee,

I think what your doc said about whiplash is technically incorrect. If you whip with enough force your brain can bump your skull in my opinion and is that not the same as being hit in the head?

Bud

I had PCS and like yourself had light and noise sensitivity all the time, but by the end of the day it got worse as did my headaches.

I was prescribed Imigran for migraines and it did actually help. I also took Cymbalta for depression and this also helps with pain as well.

2 years on I saw an NHS Neurologist privately and he confirmed I have had a mild brain injury and that I have neuropathic pain.

The neuralgia I have is controlled well by Lyrica. Good luck!

Thanks Bud, I've been coping by only giving myself one or two tasks to do each day, like laundry, or a meal so at least something is getting done and getting things done helps my mood.

I've got a GP appointment Friday to discuss my meds, currently on 100mg sertraline but i think they're gonna up it.

Re concussion/whiplash, I reckon it's more a case that since concussion was defined they've found that whiplash can cause the same problems without an actual blow to the head, but the word concussion has not yet been redefined.

I can't see how it matters HOW the brain gets shaken in the skull.

They're gonna put me on amitriptyline for migraines, I'm happy to try it but just don't can't see how it could entirely be migraines, as the cognitive problems I have are not on the symptom list for migraines.

Did the migraine meds help your other cognitive symptoms, or just the light/sound sensitivity?

It makes me angry that she told me she thinks I'll fully recover, I don't think it's right to say that, at this point in time she has no idea what's wrong with me and it is a horrible thing to give someone false hope.

It's like someone going for an operation and the surgeon guaranteeing they'll be fine, when you can never guarantee that.

Hi Anja,

I think your doctor is wrong...

a person can have a concussion even if they do not lose consciousness.

but then again I'm not a doctor.

Anja,

As Lara said, this doctor is wrong. The vast majority of concussions happen without any loss of consciousness.

The Neurosurgeon who cared for me suggested that I would most likely have headaches for the rest of my life. Stress is the big trigger for me and I was diagnosed by an eye specialist as having ocular migraines, and he added that my eyes were healthy with the cause being central. I interpreted that to mean my brain. My headaches are manageable in that I can control certain stresses that act as a trigger.

Jamie