Any help/advice much appreciated :-(

Brain and nerves
1

Hi all.

This is my first post, I came across this website whilst browsing online looking for information.

I'll try to keep it as short as possible.

I am 28 years old and have 3 children. I have suffered from migraines since I was 9 and I am 3rd generation of my family to suffer from them.

Around 6 months ago my youngest son who is 5 started to suffer from these 'episodes' and it didn't take me long to realise they were migraines. I was concerned about him being so young and wasn't sure if they definitely were migraines because of his age but with each one it became more and more clear it was.

These episodes start in the same way. First he looses his sight in one eye, as you could imagine that is very distressing for a small child to experience. Then comes the nausea.

I took him to see the GP who agreed he is very young but said he was 99% sure it was migraines and referred us to see a neurologist.

We attended the appointment 3 months ago and the dr said it was most definitely migraines and explained what I already knew...there's very little that can be done about it! He then referred us to see a genetics dr and that appointment is at the end of October.

Since the visit to the nerologist 3 months ago my sons symptoms are getting worse with each migraine and we've had one migraine a week for the last 6 weeks.

My son now suffers with the loss of his eyesight, nausea, pain in his head, dizziness, slurred speech and he can be very unsteady on his feet. This is a massive increase since his first migraine and is very upsetting and distressing. He doesn't understand what is going on and cries hysterically. As a fellow migraine sufferer it breaks my heart that I can't help him. I give him calpol/neurofen but it doesn't help at all.

This evening he has suffered another migraine. It came out of nowhere (like the rest) and he has been very upset. At one point when he couldn't see he was shouting 'someone help me' and after an hour of feeling sick he said to me he couldn't take it anymore. This made me cry my eyes out. I plan to take him to the GP tomorrow but I'm worried they will just fob me off.

Does anyone have any advice? Has anyone been in a similar situation with a young child suffering?

Thank you for reading and sorry about it turning into an essay! Any help/advice is much appreciated. X

2

Poor little man, and poor you, it must be shocking to watch him being so scared. I have the same sort of migraines. And the ONLY thing that has almost cured them is powdered magnesium every morning, my neurologist told me to try it and it has been amazing, if I do get one now, it is so mild and very short lived.

Help this helps.

3

Honestly I could weep for you. It's just awful having migranes yourself, but when your child gets it it just hurts your heart! My daughter said "I can't remember what it's like NOT to have a migrane" & I just felt sick.

So- apart from sympathising with you hugely, I will also give you my words of advice...(you never know?!!)

1) triptans? They have honestly saved my life. 5 might be too young for gp to prescribe, but the hospital can. (They have done nothing for my 9 year old tho...)

2) acupuncture. We are trying this now. Not available through hospital tho

3) floridix (iron supplement). Worth a try?

I will keep you posted if any work for me!

Good luck X

4

This is awful for you both.  I have never been able to track down my triggers, apart from sleep, either lack or too much, flickering light, including sunshine through trees etc. strong perfumes and extreme changes of temperature.  The Drs tell you to keep a food diary to try and find food triggers so you could think about this for your son.  Caffeine probably isn't an issue but may be artificial colours in food are.  Maybe the Dr could send you for food and allergy tests.  I have tried numerous prescription preventatives, acupuncture, Tens and nothing has helped.  Triptans taken at the start of an episode are the only things which work, but be careful about rebound headaches if too many are taken. Good luck on your journey I'm afraid it maybe a long one.

5

Sounds sort of basic, but with severity of his symptoms and the fact they are increasing, have they done an MRI to rule out other possibilities?

So sorry, I cannot imagine a child suffering the way adults do. I think I would also consider counseling as just a means to cope with these dramatic symptoms.

6

Hello,

I am sorry to hear your son is going through this horrible sittuation, its destressing for all of you I imagine. 

The advice I would give, as I suffer from similar symptoms, is to take him to A&E if the symptoms continue to get worse, he needs to be assessed and have lots of tests to rule out things.

I have to go to A&E evertime as I get so weak down my left side, this is called hemiplegic migraine and could be what your son is suffering.

Good luck and let us know how you get on.

Take care and best wishes

7

Hi. I just read your post and feel really sad about what you are going through.

I am a lifelong sufferer of vasculitis and I remember so well having these sort of symptoms as a child. I don't know if I was properly diagnosed in childhood as my medical records were lost years ago. And I had a long period of remission aged about 7 until 21. After return of symptoms it took until I was in my 40's to get a proper diagnosis.

I have no idea if your son has something similar but I would want to rule this out. I had a very complex and painful migraine syndrome associated with my illness. Now under control with treatment.

I would recommend that you speak with vasculitis UK if you are based here or the Vasculitis Foundation if you are in the US.

If you are in the UK I would recommend you look at sending him to see a Dr Desmond Kidd at the Royal Free hospital in london. He is a neurologist with a special interest in vasculitis.

If not please try to get a referral to a different kind of consultant, an expert in that area close to you. A neurologist was totally unable to diagnose me because the pain was being caused by inflammation.

Please ask for your son to be tested for auto immune disease. I wish you the best. X

8

Please excuse my stupidity but I've suffered from migraines for over 30 years and now suffer from one that is constant. It has been since 4/2010. Anyway, please tell me what A&E is? I've never heard of it. Thanks for your time.

9

Accident and Emergency department. If you are American it is ER. X

10

I am so sorry for both you and your little one? I don't know where you are located but if you're in the US and it is possible, I suggest you take your son to the Diamond Headache Clinic in Chicago, IL. They will keep him for at least 5 days. They provide housing for you at the same location. They deal with not only his physical health but also his (and) your mental health dealing with a life with migraines.

I speak from experience as I was there around 1993. Unfortunately, my situation has progressed to a constant migraine. It is always with me (for 6 years now). I did get some hopeful new the other day from my doctor who is a headache specialist. He told me he expects the release of a new medication within a year. This medication effects the genes. Migraines go back as far as 5 generations.

Hope I was of some help. Take care and God bless you both.

11

Thanks much for taking the time to respond. God bless!

12

Thank you for the replies! What a relief to know I'm not alone!

I have taken all of the comments and advice on board and I am going to visit my GP this afternoon with my son.

At his original appointment with the neurologist he ruled out an MRI scan at the time as back then we were only dealing with the loss of his eyesight and nausea, now I'm going to push for one as I'm worried about how quickly things have progressed.

I have never been able to figure out a trigger for myself in all the years I've suffered from them, neither has my father and so far there doesn't seem to be anything for my son but as suggested I'm going to start keeping a diary, there could be something that's done differently that day etc that I just haven't picked on yet.

It really is so distressing, seeing him suffer makes me cry. I wouldn't wish migraines on anyone!

Again thank you for the replies, I will post later on today after our appointment. X

13

Hi!

Thank you for your reply. This is certainly something I'm going to look into, I've never considered it to be anything other than migraines.

I am glad things are now under control for you.

Thank you again for the advice x

14

It may well just be migraine....I just feel when bouts are too frequent and don't respond to conventional treatment there may be other underlying causes which are not being considered. 

Either way it means suffering for your little one and that's heartbreaking. I feel your pain over this and hope you get answers soon. x

15

Hello MrsW, has anyone ever told you your son has hemiplegic migraines? I have suffered with migraines for 30+ years. In April 2010 a migraine became constant. I go to sleep with it at night and wake up with it in the morning. It only changes in location and intensity.  Lately the pain only ranges from 8 - 10 on the pain scale. But, back to your sons condition...

Only once in the 6 years that the headache has been ever present did it manifest to a hemiplegic "stroke" headache. I was 55 years old and it scared me and everyone that was with me nearly to death. My joints froze. My elbows were bent up and I couldn't straighten my arms. My hands were clawed and felt like they were burning. My speech was so slurred you could barely understand me and I had difficulty walking. I was over 60 miles away from any medical facility and it passed in slightly over an hour. When I saw my GP a week later he had me tested by a cardiologist. They found no signs of a stroke. I was not convinced. I know something happened. I explained everything to my headache specialist the next time I saw him. He told me it was a hemiplegic migraine. He told me they generally last 30 - 60 minutes but may go on anywhere from days to weeks to months. Do you have headache specialists where you live? Or a neurologist that specializes in headaches or an  anesthesiologist? They sometimes specialize in pain management and headache pain. I suggest you do what you can to see another doctor. I only suffered from a hemiplegic migraine once and I will never forget it. I would rather suffer with my daily migraines than another one like your poor little guys. I feel so badly for you both. I will remember you in my prayers. Good luck and God bless.

 

16

Hi all.

Just a quick update for the people who replied to my original post.

Thankfully we have only had two episodes to deal with since my last post. I took my son back to the GP the day after writing the post and practically begged for help. He unfortunately could only advise me to give my son Calpol but he did refer us back to the neurologist.

We had the appointment today and the neurologist has prescribed us propranolol. We are starting out on 10mg and slowly increasing it to 20mg over the next four weeks. Does anyone have any experience with this particular medication? I'm worried about my son taking daily medication, he is still very young (almost 6!) I'm willing to try anything that may help him but I've never come across propranolol before.

Thank you for any help or advice you can offer :0)