nadolol

[Josie]

Has anyone tried nadolol for their children's migraines? I took difficult child 2 to a new neurologist and he discounted the Lyme Disease diagnosis and suggested we increase her Elavil from 10 mg to 20 mg and add nadolol. He also prescribed Frova for occasional use when she actually has a migraine.

She is actually improving mentally from her Lyme treatment so we are not giving up on that idea but she still is laying in her bed alot from her head hurting. We are hoping to treat that symptom while we wait for further improvement.

 

[TerryJ2]

Wow. I am so sorry... I missed out on this.
He totally dismissed the Lyme disease connection to the migraines? Hmm.
Is nadolol related to haldol? I had a shot in my b*typical teen once when I had a migraine. It was totally useless.
Is she on an anti-inflammatory? (Like prednisone)That is supposed to be very important for Lyme disease.
I wish I could be of more help.

 

[smallworld]

My son has been taking Propranolol, a blood pressure medication in the same class as Nadolol, for migraine prevention for four years. It has been a miracle medication for him. We first tried Nortriptyline (same class as Elavil), and he continued to get headaches just about every day. We then switched to Propranolol, and within days, he wasn't getting daily headaches. Except for times when he's needed a medication increase (twice over four years), he is virtually headache-free.

I'm wondering if in time you might be able to get rid of the Elavil and just use Nadolol. In any event, I hope it works for your daughter.

 

[Josie]

Yes. He totally dismissed the Lyme Disease because "This is Texas. You have to be somewhere like Connecticut to get Lyme Disease."

I expected him to dismiss it but I wanted to see if he had any ideas for pain relief. He is at a headache clinic. His idea is that they are untreated migraines. She has had a constant headache since October.

Nadolol is a beta blocker.

Her Lyme doctor believes steroids are contraindicated in Lyme Disease because they suppress the immune system and allow the bacteria to multiply.

 

[Josie]

I was thinking of trying just the Nadolol to see if it worked by itself. We have weaned her down to 5 mg of Elavil since it didn't seem to be working any way. I hate to increase it if it might not be necessary.

I am very angry at her former neurologist for not being more aggressive about this. She barely went to school all year because of headaches and he told her she should drink more water and do yoga! Even if this doesn't work, at least this doctor is trying to help.

 

[gcvmom]

WTH? So Texas is off-limits for Lyme disease? Does Lyme disease know that?!

That's just absurd for someone to say. Has that doctor seen the CDC reports for Lyme?

Here's a link to a 2006 CDC map for Lyme disease reports for the entire US:

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5623a1.htm?s_cid=mm5623a1_e

And here's an earlier CDC map:

http://www.cdc.gov/ncidod/dvbid/lyme/who_cc/tick-map.htm

Excuse me, but I think those little dots in Texas indicate cases of... LYME DISEASE. Sure, it ain't as prevalent as it is in the northeast, but to completely brush it off as impossible is just irresponsible in my opinion!

(Wow, that got me really riled up and I don't even live in Texas!)

 

[Lothlorien]

You know, I am really so sick of doctors that are not in the Northeast completely dismissing Lyme's disease and not taking it seriously.

Did you see the tick? Did he have a bullseye? Did he have any of the symptoms, like flu-like within the next week or so?

Generally (this is coming from a friend who is a pediatric nurse), the tick has to be on for about 24 hours to get Lyme's. It is a very tiny tick and easily missed. He may not have had a bullseye, because not everyone gets it, but it's very obvious when someone does get it. I've seen it.

If you think he may really have it, get another opinion. If he's not treated for Lyme's, it progresses and is neurologically based. I've seen the extreme effects from Lyme's and it is debilitating.

 

[Josie]

We are treating very aggressively for Lyme with another doctor. We have to go 600 miles away to find a doctor who will recognize and treat it.

I did see the bullseye rash but didn't know what it was at the time. My mom was then diagnosed with Lyme and told me to watch for a bullseye rash so I knew. My daughter's doctor wouldn't treat without seeing the rash and said we don't have Lyme in Texas. Then another doctor told my mom she probably didn't have Lyme either. My mom did get treated at the time.

About 3 months later, my daughter started having symptoms of sore throat and not feeling well. She was diagnosis'ed with strep without a culture. I kept taking her back to the doctor thinking the antibiotics didn't work but when they did test, the tests were negative. That is when her headaches started too. There is no doubt in my mind that it is Lyme. Unfortunately, that was 4 years ago. We didn't figure it out until about 6 months ago.

My daughter is getting better but it is just going very slowly. Her headache is not being helped as much as some of her other symptoms.

It is very interesting to me that her raging, easily hurt feelings, and extreme irritability have gone away with Lyme treatment. Her anxiety is much better also. Unless you are reading Lyme boards, you never see these as possible symptoms of Lyme.

Once she is better, I will have to go on a mission to educate people about Lyme. It is a terrible disease and it is made worse by doctors not believing in it.

I'm hoping that even though her headaches are caused by Lyme that migraine treatment will help. Her headaches were controlled by migraine treatment for a couple of years.

 

[Lothlorien]

Has your daughter started menstruating?

I have to tell you, I had migraines from early on. II can remember having them as early as 6, but couldn't express them to people other than screaming that my eye hurt. I didn't know what a headache was.

It wasn't until I was about 10 (about the time that I moved in with my Dad) that my father actually recognized the symtpoms, since he's sufferered terribly with them for years. At that point, there really wasn't much treatment for them, so I suffered. They retreated when I began menstruating (yes, very opposite of most sufferers). I very rarely get them now.

That being said, I don't doubt that the headaches are triggered by Lyme's, but just wanted to let you know about my personal experience and maybe, just maybe, she'll grow out of the migraines, like me. *fingers crossed*

 

[TerryJ2]

Oh, dear. I understand about suppressing the immune system and allowing the bacteria to multiply, but it is also neurological and the nerves are inflamed and going haywire, and there's a lot more to it than just bacteria.
I would find another dr. who specializes in Lyme Disease. Those headaches are no coincidence.
It would be worth driving to another city or even state. Really.

 

[susiestar]

Beta blockers are the first avenue of treatment for migraine prevention. Then come calcium channel blockers, and then other medications. Beta blockers will cause sluggishness and sleepiness for a while. This is because they lower the blood pressure. The body DOES become used to this in just a few weeks and then life can be mostly migraine free.

I have been through ALL the migraine preventative medication classes and the beta blockers worked best BY FAR!

I think this is a good step to try. Be patient with the tiredness. If it seems excessive you may want to ask about trying a different beta blocker.

For a long time propranolol was the gold standard for migraine prevention. It needed to be the long acting kind to be most effective. Or so I was told.

I hope the new doctor can get your baby to be migraine free, or close to that very soon.

Hugs,

Susie