Coping with neurological conditions.

Steel Maiden · 03-01-2013, 12:12 PM

I suffer from chronic migraines and partial seizures, and my neurologist prescribed me Topiramate for them.

However I am getting migraines almost every day, I am constantly dizzy (I keep stumbling) and I have seizures on a daily basis. Also my sensory issues (due to autism) are giving me a lot of trouble and are triggering these off.

I am going to fax my GP a letter about getting my MRI done sooner.

My questions are: how can I carry on with my university course when I constantly feel unwell? What extra support (I already get a support worker and study skills tutoring) or allowances can I get from university?

I am really anxious that there is something really wrong with me as I've been constantly dizzy for a week now. And I've been having new seizure symptoms.

Is it appropriate if I ask my GP to get me the MRI done sooner?

I have a mid-year exam in Pharmacology next week, do you think I am in a fit state to do it? Considering that I spend my days at home feeling dizzy, severe headaches and having daily seizures.

Thanks.

Rodolphus · 03-01-2013, 04:37 PM

I think it's appropriate to ask for your MRI sooner as you've been experiencing new/more often symptoms that are seriously affecting your life. It's by no means unreasonable for you to ask for it to be brought forward.

It's sounds to me like you may not be able to perform as well as you're able to (when you're not feeling as ill as you currently are) at the moment and that may negatively affect your exam, would it be possible for you to take the exam at a different time? Perhaps your support worker could find out for you?

Your symptoms sound very distressing and I hope that you feel much better very soon, Oly. Are you able to keep your environment a comfortable one for your sensory issues at the moment, until your migraines and seizures are easier to deal with?

Steel Maiden · 04-01-2013, 06:15 AM

Thanks. I will fax my GP about the MRI.

My mental health is poor as well, so I'll be applying to take the exam later or to be exempt, because I can barely focus both due to mental health and migraines / seizures.

I've been staying at home in my bedroom for a week now, except for going to the dentist down the road and my OT taking me to the pharmacy. This is to keep sensory stimuli to a minimum (low lighting, less noise etc). However next week I have uni and I really do not want to have a seizure at uni.

Aztec · 04-01-2013, 10:15 AM

I think you should push to get the MRI sooner,
I suffer with really bad pains in the left side of my head, 24/7 and I'm on amitriptyline for the pain. I understand how bad it can get, trust me! Sometimes I sit sobbing!
Is there anyway you can try to block it out? Keeping busy so that your mind isn't focused on the pain?
I also have frequent nosebleeds, I don't know if you have those for not?
Just try and keep your mind focused from the pain, and rest if you need to!

Steel Maiden · 04-01-2013, 10:59 AM

I used to get frequent nosebleeds due to haemophilia but I'm on Tranexamic Acid now so I don't have that so much, although my von Willebrand antigen is still quite low.

Sorry to hear you have so much pain.

I will push to get the MRI done sooner.

I find that reading and light makes the pain worse so I usually lay in a dark room and listen to a hypnotherapy MP3 or relaxing music.

Doesn't help when I'm hearing voices at the same time.

Ballerina123 · 04-01-2013, 11:12 AM

It would be good to get in touch with the university disability service and aske for an appointment to see what they can offer you.

An MRI seems like a good idea. I think a medication review would also be a good plan as the meds your on now don't seem to be helping the way they should.

All the best

Steel Maiden · 04-01-2013, 11:57 AM

Thanks.

My mental health is crap. I've emailed them and I'll see what they say. I don't know how I'll go to uni on Monday because of the Spies.

I will try and fax my GP today. Motivation non-existent.

Crazy Cupcakes · 06-01-2013, 10:03 PM

Sorry you're not feeling great. I agree that pushing to get the MRI brought forward sounds like a good plan - the quicker it's done, the quicker they can find the best treatment for you :)

Did the dizziness start before or after you started on Topiramate? Because when I started on that, I was dizzy/disorientated for a few weeks (it comes back every so often now, but it's not as bad and not all the time) so it could be a temporary thing?

When I wasn't feeling great, my GP wrote a letter to my uni asking that this could be taken into account with my work, I don't know if that would be an option or of any use to you?

Steel Maiden · 07-01-2013, 07:01 AM

I think it may be the Topiramate.

I've been made medically exempt from an In-Course Test I'm meant to have today, thankfully.

I contacted the disability office by email but they haven't got back to me yet.

Thanks.