Dr S appointment today - update on progress

Hi
My 11 yr old has had a constant daily migraine and spinning for 14 wks now (she has not been at school all this time). Went to see Dr Surenthirin 10 wks ago and put her on Piz and 6C diet. She was on 0.5mg for 2 wks then upped to 1mg (been on this 8 wks now - 10 wks in total on Piz).
She did get much worse to the point she was clawing at her head in agony, crying all the time, wouldnt go out of the house.

The first improvemnet I noticed was her sensitivity to noise (probably after 5 wks on Piz) I couldn’t hoover, dry my hair or anything without her going mad but then she was ok and the noise didnt bother her. Probably another 2 wks later and the crying stopped, she still had a daily head ache and constant spinning but at a slightly lower level. In the last two weeks I have also managed to get her out to the shops a few times for an hour (her symptoms have increased when out but she coped). We have had a slight backwards step this week as she has had a bad tummy ache as well (not sure if it is part of MAV or something else).
I would say after 10 wks on Piz she is 30% better.

Saw Dr S today and he said her progress is what he would expect. He also said it is a case of 2 steps forward and 1 step back and that slight set backs are par for the course. He has upped her Piz to 1.5mg (the max for her age) and she has to have the extra tablet in the morning (slightly worried about the tiredness in the day and more weight gain (she has put on 5kg)).
He wants her to start going back to school for a couple of afternoons a week. He said to see it as a tool to help her recovery (getting her brain used to coping with more noise,people etc to help it switch itself back onto automatic) and not expect her to actually be studying/learning.
She starts secondary school in September but he said he can not say wheter she will be able to attend full time school by then (I am keeping everything crossed).

I thought I would post this info as I know my expectations of her recovery would have been significantly different if I had known it was normal for it to take weeks to see any sign of improvement and months before any significant progess would be made.

I am still trying to overcome peoples attitude of “its just a headache get on with it” or “she looks ok, are you sure its not all in her head”. I find this so upsetting as I can not imagine what it is like to be in constant pain every day and never feel “normal”. She has had comments from some people in her class to this effect and I am slightly worried about this esculating when she starts back at school next week. Does anyone have any suggestions of what I can tell her to say back to the children in her class if they say things like this too her.

When you say she did get much worse? Was that after starting piz?
I have to keep reminding myself with every relapse that recovery is counted more in months then it is in days or weeks. This truely is a terrible thing to be dealing with for everyone involved.

Yes, she got worse once starting on the Piz, had constant imgraine that was much worse and caused pain in different parts of her head. Probably very bad for 2-4 wks once started. I can’t remember exactly it all merges into a blur.

Oh that is such a relief, i have just gone up to 1mg of piz which i added with my SR verapamil 180mg and i am
Completely crippled, i know it helps with my pain if i am
On it long enough, but i am spinning so hard that sleeping walking etc is extremely
Difficult and i am relying on valium every second day, its tough as anything, i am a single mum of a 4 and 2 yr old but am lucky to have family memebers helping me out. Your posts bring me so much peace in this crazy nasty setback i am in. I wish you and your girl all the best and yes i understand i have had this since i was 15 but only got diagnosed last year and it all becomes a blur so i keep a diary that helps track my days so i can see whats happening. Xx