Hi All
I joined this website last year and just rejoined as a new user due to changing my email address.
My son got Vestibular Migraine (MAV) when he was just 9 years old and we have had many ups and downs as you can imagine. Our consultant begged us not to put him on medication and we didn’t. He is now 12 and has in the last 2 months had many bouts of dizziness followed by migraine or visa versa. But for the last 3 weeks the extreme exhaustion and lethargy continue and I am starting to panic wondering when we are going to see a change for the better. He can’t do his sports, he goes to bed at 8.30pm every night and it is quite frankly heart breaking looking at a young body immersed in what is like an old person. We are on end of term, and he counted down the days and just tried to get through his last week. ( He had been out on and off for 3 consecutive weeks due to dizziness and migraine.).
When I read the blogs, I get more scared as the tiredness seems to be a huge part of this condition. Has anyone and tips to help relieve/cope with the lethargy and tiredness?
Pace pace pace, it’s all about not doing too much all at once, which I know is tough for a younger person. The lethargy is there because the brain is doing so much more than the average person to keep us upright with all of this, and the overstimulation doesnt help, especially the effect on the eyes.
Hi, and welcome back. Sorry your boy is still suffering so much.
As you’ve been here before you’ll know we aren’t doctors and you’ll understand that he is suffering this tiredness and lethargy because this condition causes the brain to use so much more power just keeping us upright it hasn’t sufficient spare capacity for other things. It must be very difficult to have to restrict a young lad’s activities therefore I would suggest that the best course of action would be to return to the consultant in the hope that he is able to provide the boy with some form of relief from his condition thereby reducing the tiredness and extreme lethargy.
I’ve no idea how they approach the treatment of children with VM/MAV but do understand it’s different from treating adults. All I can suggest is that you start keeping a detailed written log of your son’s activities, foods, attacks, symptoms etc with some scale relating to frequency, duration and severity to present at the next appointment so that the consultant has some record of how the condition is affecting the lad’s quality of life. There are most probably computer apps that you could utilise to this end if you prefer. The attached article written by one of the top US consultants should give you additional insight into dealing with VM in young people. Helen
Breaks my heart…
is your son supplementing? I don’t know what the dosage would / should be for a young person but may be worth asking the Dr about vitamin B2 and magnesium. I agree with the others who have commented, please search out a neuro-otologist to get his quality of life back. Best wishes to you and your son!
Hi,
Yes, he takes the magnesium and the b12 riboflavin every day… sadly they are not working. I think if I don’t see a big change in him by the weekend I will take him back to the consultant.
Hi Beatit
You don’t say where you are based but you might find some useful info at this link - it’s a headache clinic specifically for children.
If you are in the UK but not near this clinic, perhaps if you phoned them they might be able to recommend a neurologist or otoneurologist near you who treats children
All very good advice here, especially to get another opinion.
I just wanted to ask if he’s also been evaluated for orthostatic intolerance. It’s becoming more common in children- my daughter suffered a form of it (during a growth spurt) called POTS. It can cause extreme, disabling fatigue. It can, and frequently does, coexist with migraine disease. There is treatment. My daughter saw a pediatric cardiologist who specialized in these disorders.
I’m no way saying he has this, just wanted to mention it when I read about his age and the extreme fatigue.
I am so sorry to hear about your son. It makes me really sad to hear about what he’s going through. Please tell him that he is not alone in his troubles and that he can get through it. Wishing him the best.
Also maybe he might find relief laying flat on his stomach during an attack at home on the bed and putting a pillow on my forehead and closing my eyes. Put on music or television show that he likes and let him listen to that. It might help him take stress off the actual attack. I find that helps a lot for me.
I think as the others in the thread said a lot of helpful stuff. I find myself defintely tired if there’s been over simulation or just trying to keep myself extra calm all day to keep an possible attack from occuring.
HI Thank you
We live in the UK and see an audiologist and neurologist in the Portland. They have been very good and supportive but I think I need to take him back now.
thanks again
Hi Napgirl
I took my son back to the Audiologist. Explained the continual exhaustion. He is now off all sport and is like someone suffering a constant hangover. the only way I can describe him is like someone who is totally wasted on and off and good day is getting through school. Looks like you are very astute. Once I told the consultant about his symptoms, he started taking my sons blood pressure lying down, four times and again when he stood up. his pulse continually went up by 50 beats which is abnormal and the consultant said he thinks he has POTS. We have our appointment on thursday at St Elizabeth and St John’s to see Prof Chris Mathias. It looks like my son has reached a peak and is getting worse and worse and I have muscular spasm in my shoulders and I know it is because I am so stressed out seeing him unwell. Fingers crossed for Thursday and I will let you know how we get on.
So happy that I am speaking to you now. I obviously have to wait and see what the Dr says on Thursday, he specializes in this area and is a neurovascular consultant. If he does have POTS, is there any QUICK fix? I understand lots of water ( he already drinks at least 2 litres a day), increase in salt and a low carb diet??
Thank you so much
Things have gotten worse for him and his energy levels are like that of a very old persons. We saw his audiologist 2 weeks ago and he believes he has another condition called POTS, its orthostatic where your veins are too bendy and when he stands up all the blood stays below his knees, making his heart pump 4 times faster, causing… headache, extreme exhaustion and dizziness!! We have our appointment on Thursday and it can’t come soon enough.
