Migraine

Well we are back from the hospital and we finally have found out that Ollie has Psuedotumor Cerebri or IIH. This is great news as it explains so much.

Ollie had an MRI under a general anasethia and that was clear so the lumber puncture was done the following day. It was explained that this needed to be done while he was awake from a diagnositic point of view as sedation effects the pressure.

I did not go in with Ollie, his Dad did and he came out sweating. He said it was awful. The Dr doing the procedure tried many times to insert the needle but kept missing. Ollie has lots of puncture marks. Finally when Ollie got really distressed the head Neuro took over and he got in first go. The fluid just gushed out and he had a pressure of 41. Apparently normal for him should be between 5 and 15. They drew off some of the fluid and reduced the pressure to 10. Then the hardest part was getting him to lie still for the next 6 hours.

None of the hospital neuros thought it would be PTC so they were surprised. The main neuro said the Opthamologist did a great job in recognising the slight blurring on the edge of his optic nerve. They have looked in his eyes many times and not seen papilledema.

Our primary care Neuro(In hospital) was the one who was so dismissive in the ER. He totally changed his tune and was extremely nice and helpful.

So for now there are no changes to his medication. They want to wait and see how he goes and recommend I continue the diary and see the Opthamologist within 2 weeks to see how things are going.

Ollie is happy and full of beans.

It all makes so much sense now. The Neuro ward staff were so caring. I met another kid in there with chronic HM who was having a PFO closure after 6 years of bad migraines. He went home after surgery great and was in the following day with a shocking migraine. The Mum and I were so happy to meet each other as neither of us had ever met another kid with HM.

The Neuros seem to think that this is it and he may never had raised pressure again. It just remains to be seen. Just need to closely monitor his vision from now on and see what happens.

Ollie needed something to give him a break and it looks like he has finally got it.

Much thanks for all the support Daisy.

What great news!!! It so nice to know there is a reason for his symptoms.

Mary in NM

I'm so glad you finally have an answer!

Glad that you and Ollie finally got an answer! Teri Robert and Nancy Bonk both have IIH. We have an article on it if you haven't seen it before:

Pseudotumor Cerebri (IIH) - The Basics

I'm keeping my fingers crossed that this makes the difference for Ollie that you're hoping for! Be sure and keep us updated, ok?

Daisy,

I'm glad he was finally diagnosed. Hopefully, it will turn out that the PTC was triggering a lot of his Migraines.

Sorry to bring this up, but don't be surprised if the pressure goes back up and he has to have an other spinal tap. I've never seen the pressure stay down without medication to keep it down. If he has to do this again, I'd insist that the neuro who took over just do the procedure in the first place.

Did they try to sit him up earlier than six hours. It's now been shown that lying still isn't the issue. It's how the individual reacts the the procedure and change in spinal fluid pressure. When I had mine to diagnose PTC, Dr. Young had the nurse raise the head of my bed after just 15 minutes, saying that I'd either have a spinal headache or not, and lying still wouldn't make a difference. I was fine and left the hospital withing an hour of the completion of the spinal tap.

Please keep us posted?

Daisy,

What a relief to have some answers! I'm sending positive vibes your way

Please keep us posted, k?

Great news, Daisy. Also great news that the hospital neuro changed his attitude.

I was overjoyed at the hospital and cried when I found out about the IIH. We have spent so long exploring triggers and trying preventative medication and pain relief medication, none of which has helped.

I had a day of happiness and then the realisation that like Teri said this will propably reoccur despite what the Neuros said. I have read enough about this condition to realise that they are only giving me the best case situation. The fact that we are off to the Opthamologist again so soon for monitoring gave me a big hint.

If Ollie has to have another LP I will insist it is done by the head Neuro. I dont think he is going to willingly participate in that again now that he knows what it is like.

I really credit this site with helping us to get a diagnosis. Everyone has been so helpful.

Thanks again for all your wonderful support and helpful information.

Love Daisy

I'm so happy you finally have answers, and I hope with all my heart that the now-lowered pressure helps tremendously.

I'm sorry poor Ollie got the pincushion treatment. The LP I had was a complete cakewalk, and I even let a brand new med student do mine. I so hoped for the same for Ollie. I didn't have to lie flat for a long time, either. I was up, dressed, and out the door within ten to fifteen minutes, without any complications.

I'm absolutely positively thrilled to hear that Ollie is happy. That alone made my entire day. Big smooshes to you all!

Great news that you have an answer. I myself am going to be having an LP soon, after my MRI's are all done.

I hope that now Ollie will have a huge reduction of Migraines with the CFS under control.

Hi Daisy,

Sorry I haven't been in sooner. So glad to hear about Ollie's diagnosis. Very sad to hear about too many needle sticks.

Something to consider if he has to have another LP, is make sure the doctor has performed LOTS of them.

You can find additional information on PTC at the Intracranial Research Foundation site HERE:

An update.

Ollie is still not better and now it is unsure if he has high sure or low intracranial pressure. The neuro team he has seen are not sure as he has some very mixed signs. They dont want to rush into another lumbar puncture and are waiting to see what happens.

He has had a number of bad migraines within days of the lumbar puncture. He had a good day yesterday and I thought I would send him back to school only to have his first words today be "I think I am going to vomit".

We are off to the opthamologist on Tuesday for further follow up and the Neuros have said to bring him in for another LP at the first sign of any visual disturbance.

I think my spiritual lesson in all of this has been patience. Every thing has been wait and see.

For now he is tapering off his migraine preventative and will start on metoprolol(its hard to read the neuros writing) a beta blocker.

Who knows what the future holds. Its just day by day at the moment.

Thanks Nancy for the link. I have been trying to read up on IIH and like the Neurologists say he does not fit a classic pattern so things are a bit confused.

Again to all thanks for the support. This site has been a god send.

Cheers Daisy

Hi, Daisy. Here's some information on metoprolol/Lopressor:

METOPROLOL - ORAL

Take care.

Hi daisy,

Here's the thing with PTC, this vision issue. We don't want Ollie to have any. Just because he doesn't fit the "profile" for some with PTC doesn't mean he doesn't have. His CSF pressure may be too high for him, and if it "shot" across the room, that is a pretty good indication for a positive diagosis.

Here is a SharePost Teri wrote that may be helpful:
The ONLY definitive way to diagnose pseudotumor cerebri

Another PTC site for you: PTC group.

Keep us posted when you can. Drugs of choice for this condition currently are diamox, methazolamide.

Thanks Nancy for the good info.

Heres an update on how Ollie is.

He has just had his first week in nearly 6 months without a migraine.

He still wakes up every morning wanting to vomit and has leg pains and nausea at night. This seems to indicate that his pressure is building up again but overall he is so much better. He is a different child. I have heard him laughing over the last few days and it has made me realise that he had stopped laughing a long time ago. It brought tears to my eyes.

The ophthamologist thinks his very slight papilledama has decreased slightly indicating that the pressure is down.

Ollie has gone back to school for 3 days in a row now but can only manage afternoons. He has missed almost a whole school term so this is big progress.

Ollie has had one day of perfect speech. (on the only day since the LP that he has felt totally fine) It still is slurred when he feels nauseous but overall hugely improved.

We have now got a great medical team on side. The nasty hospital neuro has been like an old friend and finally given me the appropriate medications to treat the nausea.

Ollies neuro has rung back within an hour when I have had questions.

The ophthamolgist has given me his mobile number for the holidays and said to ring him direct if there are any problems over Christmas.

My husband has been interstate on business for the last few days and thats been fine. I can cope now.

My friends have all been wonderfully supportive as well through this whole ordeal so that is a blessing.

I am finally feeling better and not so alone with all that suffering.

We are still at the beginning of the journey with IIH but at least Ollie is no longer being left to suffer. He is getting treatment.

Thanks to all for the wonderful support though this trying time. May be I should be posting this in success stories.

Daisy