Migraine

Good luck on the 24th. I know how the waiting can be. You have come to a great place to talk about your daughter's situation. I have found a lot of great info and lots of caring people as well. Everyone here has really given me a lot of strength and a feeling of not being alone in this struggle. For some reason my son has gone 11 1/2 days without a migraine. He had been getting them 2-3 a week for 4 or 5 months,they were interfering with school/sports.

Best of luck with finding some answers. Thinking of you on the 24th.

Cheryl

Great news Cheryl! Here's some cake to celebrate.

Best of luck on Monday with the neuro visit, Denise! I've got my fingers crossed for her. We all know how exhausting it can be, both for your daughter, and for you. She's very lucky having you fighting so hard for her.

And, Denise, keep your daughter on those horses!

My eldest daughter, Kat, has had migraine attacks since she was 11 (she's 24 now.) I also have them. We've both found that riding a horse can help lessen the frequency and severity of our migraines.

I'm really hoping, though, that whatever's going on with your daughter turns out to be something other than migraine. That is, I hope whatever's going on is cureable!

You are a good Mama. You are taking the best possible care of your daughter. Keep up the good work!

Rebecca

Hi All

Well we had our neuro appt. Not sure I was happy with it. He essentially suggested that the severity of her headaches is coming from her conditioning herself. He said there was no neurological pathway that would cause a headache to come on only at night at the same time. He therefore felt that she was conditioning herself and we needed to determine why. He is referring us to headache specialist who is essentially a psycologist to help her with coping mechanisms. (which is fine we can all use coping mechanisms).

He also said that her inability to walk due to muscle weakness and dizziness is not a migraine related symptom. (again he felt she was conditioning herself).

Overall I was not impressed. We are continuing with the acupuncturist (who disagreed with everything the neuro said) and hope that this resolves her problem. Just to clarify the acupuncturist did not actually say he would cure her problem - he indicated if we can balance her body systems the migraine triggers would not be effective. She may experience headaches time and again but not to the degree of a migraine and not to the extend of every night like now.

sorry to be so long winded...I'm very frustrated by this whole thing!
Denise

Well I can see why you're frustrated!

Did anyone give you this link? The best person to see is someone who specializes in migraine and headaches.

Patient Recommended Migraine and Headache Specialists

Hmm... I'm going to be blunt here. I think it may be in your daughter's best interest to fire that doctor's sorry butt and find her a migraine specialist. It may be a little while before you can get an appointment with one, but it's worth it for her, right??

Don't let anyone tell you it's all in her head. That's just nonsense. Take a look at the link that Deb provided you.

Hi Denise,

How disappointing!

MJ is exactly right! You definitely need to find a good HA/migraine specialist who has the experience and compassion to properly evaluate your daughter!

My HA specialist uses a psychiatrist/psychologist as part of his treatment team. Often, it makes sense to consult with someone in mental health. Depression and migraines are closely linked. And many of the migraine meds affect mental health (some make you anxious, some sedate you, etc.). It makes sense to CONSULT with mental health experts and have them as a PART of your daughter's treatment team--but you still desperately need a neurologist who specializes in HA/migraine to lead your treatment team!!!

A doctor who says your daughter's pain is all conditioning...UGH! Please don't believe that! It's time to move on and find another doctor who will truly help her!

jenny

Denise

I can understand why you are frustrated. That doctor makes me mad too.

I would switch to a different doctor. This one doesn't sound very helpful at all.

I'm not sure where you are located, but I am in the northeast. I have seen 2 of the doctors on the list of pediatric specialists. They are both excellent doctors. I can give you more information if you want.

We travel 4+ hours to see our doctor. It is worth it. Our current doctor is always available by phone or email if I have questions. We don't see him often, but we do hear from him often.

Jean Ann

Fire that doctor's sorry butt.

The others have all said it so well. I can't believe what that doctor said to you. The others have all provided you with links etc to locate other providers. I'm just shocked at the attitude of this doctor.

Take care of yourself and your daughter. The right doctor for her and answers are out there. Please let us know how we can help and support you.

Cindy

Hi Denise,

"Not impressed" may be the biggest understatement of the year! This doctor clearly has NO clue about Migraine disease and/or headache disorders. Seriously, an 11 yr. "conditioning" herself into getting a Migraine? I've never heard such nonsense in my life.....so I don't get on my I'm going to move to more productive conversation and information.

First, let's get a few facts straight about some symptoms that may occur during a Migraine attack: dizziness, confusion, fatigue, tingling or numbness of the face, visual aura, smelling things that aren't there, hearing things that aren't there, hypersensitivity to feel and touch and increased urination. Maybe I should send this to that doctor, what do you think??? You can find more information HERE

Some symptoms that should have been noted and discussed by any reasonable doctor, would have been your daughter's muscle weakness. Does she experience true motor weakness, actual paralysis when she has her Migraines? Does she by chance eat the same thing each night, or evening, before her Migraine/headache begins?

Hey, I'm all for coping skills, but let's determine her diagnosis first, then figure out how to cope with it. PA-LEASE don't use his referral. I highly doubt the person is a headache specialist. What your daughter needs is a pediactric Migraine speicalist. What part of the country are you in? There aren't too many pediatric specialists around but you can find our list HERE.

Keep us posted, ok?

Hi Denise,

I just read through this thread and I have to say...Listen to Nancy and the others. This doctor has NO clue about migraines. Do not give up!!!

Also, after reading your first post, I now realize, my daughter Amber, who was sick for 4-5 years in the past (1 year ago) with almost the SAME sypmtoms as your daughters. She was never diagnosed. I went to doctor after doctor, hospital after hospital, test after test, and same as you, doctor after doctor dimissed it. One said she should just take antidepressents!!!.

Towards the end of four years, I did have one nuerologist say she might have migraines, but at the time, I did not know what migraines were and she did not explain them. Through the four years we heard everything AS, JRA, MS, just to name a few. We got rid of trigger foods (which at the time we did not know they were trigger foods) and it helped alot. We just wished we had this website when our daughter was so sick.

You know in your heart your daughter is sick, find a specialist who can help her. I wish I could of help Amber not suffer for four years without help.

Thank you for opening my eyes, take good care of your daughter, as I know you will

Dar

P.S. Fire that doctors sorry butt!!!

Denise,

First of all, there IS one type of Migraine that can cause motor weakness - hemiplegic Migraine. Of course, we can't diagnose or say this is what's going on with your daughter, but we can give you info.

I've been thinking about her getting a Migraine the same time every day. Is it possible that she's encountering a trigger the same time every day? Maybe there's something she eats or drinks at dinner every evening that's a trigger for her.

Now, on to the acupuncturist -- This part is utter nonsense, "he indicated if we can balance her body systems the migraine triggers would not be effective. She may experience headaches time and again but not to the degree of a migraine and not to the extend of every night like now." A Migraine is NOT a degree of headache. It's not actually a headache at all. If there is a headache, it's just ONE SYMPTOM of a Migraine attack. Some people have Migraines with no headache at all. So to say she "may experience headaches time and again but not to the degree of Migraine" is just plain inaccurate.

Something to keep in mind is that a pediatric neurologist is not necessarily a pediatric headache and Migraine specialist. I don't know of any pediatric Migraine specialists in Canada, but you might call some of the "regular" specialists we have listed in Canada and see if they will either see her or recommend someone. You can find the Canadian specialists listedHERE.

Please keep us posted?

quote:

Originally posted by headaches:
Hi All

Well we had our neuro appt. Not sure I was happy with it. He essentially suggested that the severity of her headaches is coming from her conditioning herself. He said there was no neurological pathway that would cause a headache to come on only at night at the same time. He therefore felt that she was conditioning herself and we needed to determine why. He is referring us to headache specialist who is essentially a psycologist to help her with coping mechanisms. (which is fine we can all use coping mechanisms).

He also said that her inability to walk due to muscle weakness and dizziness is not a migraine related symptom. (again he felt she was conditioning herself).

Overall I was not impressed. We are continuing with the acupuncturist (who disagreed with everything the neuro said) and hope that this resolves her problem. Just to clarify the acupuncturist did not actually say he would cure her problem - he indicated if we can balance her body systems the migraine triggers would not be effective. She may experience headaches time and again but not to the degree of a migraine and not to the extend of every night like now.

sorry to be so long winded...I'm very frustrated by this whole thing!
Denise

Crocks and crocks o' HOOEY, I'd say! "Not impressed" doesn't even begin to cover things.

If I was in your place, both the neuro and the acupuncturist would be fired. Pronto. They're making me miffed on your behalf. And miffed droolies, when provoked, tend to spew fire and brimstone.

So sorry you seem to be tripping over misguidance and incompetence every step of this journey to get things sorted out, and watching your daughter have to suffer for it.