Vestibular rehab, plus a question about meds

Specific Illnesses & Conditions VM/MAV
1

The kid saw a physical therapist yesterday, to start vestibular rehab. His neurologist thinks it’s helpful for MAV, even though it’s not the inner ear that’s causing the problem. I did some poking around online, and followed links from this forum, and it looks like that’s another one of those “helps some people, not others” sorts of things.

The PT did some testing (some of which induced dizziness and vertigo), said he’s lost trust in his right side, and set him up with some exercises to do twice a day. Then he came home and slept three hours!

We’ve been seeing that when he does pretty much anything – he gets completely worn out from doing pretty much anything. Is that typical if you’re in the midst of a MAV attack?

We’re trying to salvage the school year for him – he’s going to switch three of his classes to online, and only attempt to do his foreign language and his English class at school. He doesn’t think those two classes would work well online, and I have to say I agree with him. But after one class at school (which he’s done a time or two since this started), he’s exhausted. Now that we’re adding PT twice a week and exercises twice a day at home, I’m not sure how he’s going to do any schoolwork at all!

We saw his psychiatrist earlier this week, and she’s really happy with the med (propranolol) that the neurologist prescribed. We’re signing releases for the two docs to talk to each other – if the propranolol doesn’t work for him, medicating the migraine away might become really, really tricky. The psychiatrist doesn’t think topamax would be a good drug for him, and SSRIs, tricyclics, and benzodiazepines are all right out. What other meds are there for this?

Mamabear

2

Hi Mamabear,
I’ve been following some of your posts and wanted to say, that you’re a wonderful Mum.
VR might help a bit, but the problems with MAV is, every time the migraine starts up again which can be daily, the migraine reverses the benefits of VR.
One must stop the migraine before the rehab will stick.
That’s what my physical therapist said, though a physical therapist could definitely help with your son’s leg, stiffness ect.

As for his ongoing tiredness, yes this is a real problem with migraine, I was sent for MRIs to rule out MS. MAV is a great chameleon; the fatigue can be shocking and ongoing.
A few people have talked of chronic fatigue syndrome becoming a problem with MAV.
He’s not trying to pull the wool over your eyes. It’s real!
As for propranolol, every one is different in the way they respond to BP meds. I find propranolol makes me even more tired than usual but it dose cut down the severity of the MAV symptoms.
Scott was saying that Dr Silver mentioned other blood pressure meds work as well as propranolol. Atenolol is less fatiguing for some.
There is also Epilim. They use Epilim in low doses for children’s epilepsy. It’s an anticonvulsant.
SSRIs are no good for someone his age due to the suicide potential these drug have in people under 18.

Thinking of you.

jen

3

oops! here is a website by Terry Roberts site,
about all migraine meds. a LIST

helpforheadaches.com/articles/prev-meds.htm

4

Good list Jen. I’ll use that for putting together the PI sheet list.

Mamabear – the whole thing with VRT is a little bit inconclusive with MAV from what I can gather. Logically it doesn’t really make sense that it should work at all when you consider that in most cases there is no vestibular hardware damage to retrain. The dizziness is a “central” issue rooted in migraine. Rauch says that when someone feels worse from VRT with no gains, it is practically diagnostic for MAV. In the midst of MAV it is definitely not unusual for pysical activity or even something challenging to ramp up symptoms. I get it all the time if symptomatic. On the other hand, there was this study:

— Begin quote from ____

Physical Therapy for Migraine-Related Vestibulopathy and Vestibular Dysfunction With History of Migraine
SL Whitney et al.
Laryngoscope. 2000 Sep;110(9):1528-34.

In summary:

Note: They use the term MAV here for people experiencing vertigo without the headache component.

  • Persons who experience migraine-related vestibulopathies often have abnormal vestibular laboratory results.

  • the diagnosis of MAV is often a diagnosis of exclusion after other vestibular and central nervous system diseases have been ruled out. Use of medication and control of dietary triggers is often helpful in the control of MAV.

  • The purpose of this retrospective chart review was to determine the efficacy of physical therapy for patients with a diagnosis of MAV and migraine headache. There is no evidence in the literature that persons with MAV and migraine headache improve functionally with physical therapy intervention.

  • 39 patients were identified through a retrospective chart review, 14 with a diagnosis of MAV and 25 with migraine headache. The patients were treated with a custom-designed physical therapy exercise program for a mean of 4.9 visits over a mean duration of 4 months.

  • Abnormal caloric responses were demonstrated by 55% of the patients, rotational vestibular test results were abnormal in 42% of the patients, oculomotor test results were abnormal in 29% of the patients, and positional test results were abnormal in 19% of the patients.

  • Significant differences were seen after therapy in each of the outcome measures used. Patients with MAV and migraine headache demonstrated improvement in physical performance measures and self perceived abilities after vestibular physical therapy. The group taking medication demonstrated higher composite scores at both initial evaluation and discharge than did the group not taking medication. The MAV group that received medication demonstrated differences that approached statistical significance in discharge composite score from the group not taking medication.

  • There appears to be an improved outcome if a patient is taking an antimigraine medication in conjunction with physical therapy intervention. Only four of 39 patients referred for physical therapy were worse after intervention. After performing this retrospective study, the authors believe that physical therapy should be considered an efficacious treatment for patients with MAV. Also, a history of migraine should not be considered a contraindication to a trial of physical therapy.

— End quote

Also, see this post on VRT:

http://mvertigo.cloudapp.net/t/quick-question-vrt/1082

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Hi Mamabear
Sounds like you’re hanging in there on the journey. I’d like to mention that I took a short course of Periactin (an old-school migraine medication that is an antihistamine) prescribed by my allergist. It really is sedating, does cut dizziness, and really helps sleep and will rev up appetite (and perhaps cause weight gain). If you’re short on the usual medication ideas, ask your doctor about that one (though the list previously posted is pretty extensive). We’re all pulling for you and your brave son.
Gail

6

Oh, Jenny, thanks for that link to the page of meds and supplements! I’ll spend a while going through that, definitely. And thanks, Scott, for the info on VRT. We’re used to trying things with the kid that work sometimes and not sometimes – I think I’ve mentioned before that he’s got loads of neurological glitches. The stuff about how MAV is associated with problems with sensory processing is fascinating to me. He’s got severe problems with sensory processing – especially vision, but also sound/language processing, proprioception, and even correctly identifying whether he’s hot or cold.

Because of the sensory stuff, he’s always struggled when he’s in a “busy” environment. In fact, when he was younger, we set up a corner for him, where we put a mattress on the floor, and covered it with a black sheet, and hung black sheets all around it, so there was as little sensory stimulation there as possible. He used to love going into his corner to read, or play with his Gameboy or Legos. Anything that required visual attention – in his corner, he could focus on seeing one thing at a time.

He’s got a fabulous psychiatrist, who took a couple of years to get his anxiety controlled with medication. (He used to throw tantrums like you wouldn’t believe, or run away from school, because he would go into a huge flight-or-fight response.) And he did vision therapy for a year, and occupational therapy and speech and language therapy for several years. He’s finally doing really well – despite all his other difficulties, he’s very bright. And now this – it’s tough.

Because his anxiety was so severe, we tried a lot of different medications that you might not ordinarily want to use with kids. When I looked over the list of possible meds for migraine, I know we can rule a lot of them out, because he’s already tried them for anxiety, and couldn’t tolerate them. But it was reassuring to see that there were a lot that he hasn’t tried.

Again, thanks for all the kind words and the good information. Gathering information helps me deal with my own worries and anxiety – it gives me an illusion of control, and when I really have no control at all, I find that illusion comforting.

Mamabear

7

When I was really sick and totally disabled with MAV, I couldn’t do any vestibular rehab. It just made things worse. Now, I find myself using several techniques that help me get though rough days. Focusing on putting one foot down at a time while walking (right foot, right foot, etc) It helps with balance. Looking at something at the end of long corridors, turning my eyes a little before my head. It sounds like your son needs the right combo of meds before rehab will help.

I’m sorry you have to watch your child struggle with this.

8

He saw his neurologist again today, and the PT for a second round of vestibular rehab. He’s exhausted after all that. I think it’s too early to know if the rehab is going to help – but as long as he’s willing to try, as long as there’s a chance that it might, it’s worth doing. His home exercises take about 5 minutes twice a day. That doesn’t seem to provoke any more dizziness, but it makes him tired. (Of course, everything makes him tired!)

The neurologist wants us to work with him on regulating his sleep, trying to get him to go to bed at the same time every night and get up at the same time every morning, even if he has trouble sleeping the night before.

She’s also ordering an MRI, just in case there’s something else going on. And she increased the dose on his propranolol, and switched him to a timed-release version.

I had been keeping a daily record of his symptoms, and made a little chart of that for the neurologist. I’m sure it looks different from the “inside,” from his point of view, but from the outside, what looks the worst is the fatigue. He just has no stamina at all.

How do people with MAV work? He’s gone to school for part of three days since all this started. I don’t know how long it’s going to take to get him back in school. For now, we’ve got him signed up to do part of his classes online, but he really doesn’t have the wherewithall to do that, either. Besides working on the sleep schedule, is there anything else that helps with the fatigue? Or is that something you just deal with until you get the dizziness under control?

Mamabear

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Hi Mamabear
The fatigue with these conditions is horrible. I’ve always supplemented with aceytl-l-carnitine (500 mg) and ginseng (500 mg) taking both twice per day which give me energy and mental focus. You can also add Co EnzymeQ for energy (I take 100mg twice per day) and Vitamin D3 5,000mg. You may be better off consulting a naturalpath on supplements given the delicate balance that your son has, but licorice extract is also good. Sounds like his adrenals may be exhausted as can often happen. So sorry that this is such a monumental struggle.
Gail

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Gail,
I forgot about good ole periacton, my first diagnosis was of MDds, My Dr at the time knew I couldnt sleep so he prescribed Periacton and it worked wonders for sleeping and also cleared the head from dizziness the next day.
The things we forget hey?

jen.

11

What do you mean by his adrenals may be exhausted? I feel so ignorant – I don’t know what that means!

He’s already taking vitamin D3 and fish oil. I just read a a couple of articles on the other supplements you mentioned. Apparently acetyl-l-carnitine can cause agitation in some people, and ginseng can trigger mania in people taking antidepressants. Even though the kid isn’t on an antidepressant right now, I’d be afraid to try either of those with him.

Co-Q-10 and licorice extract are possibilities, though. I take Co-Q-10 to prevent side effects from statins. It seems to be extremely safe. I’ll do some more research, and check with his psychiatrist.

Thanks so much for the suggestions! (And if you can tell me what it means for adrenals to be exhausted, I’ll be grateful.)

Mamabear

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Hi Mamabear - you’re pretty informed which is what it takes to walk the the minefield of combining meds and supplements. The adrenal glands produce adrenaline and often become exhausted when the body’s energy stores become inadequate… especially when the diet and beverages (caffeine/soda) are involved. Your son may have some chronic fatigue along with the MAV stuff. There are other supplements as well to support the adrenal glands: licorice, astragalus (good for overall immune, etc.) and others but you are wise to check with physicians and good natural food resources for guidance.
Gail
Jen - yes, Periactin is pretty old school but my allergist liked it because it’s time-tested and pretty safe. Trouble was it was reallllly sedating, I bloated up quickly, and I think it tends to be constipating. HOWEVER, it does work for sleep and dizziness…

13

I was very excited to finally get in to see a vestibular rehabilitation therapist in late October 2011, after waiting maybe 6 months. She tested my gait and since it was fine, though I’d been mildly dizzy all morning, she said that because seems my condition is migranous there were no exercises that she could specifically recommend to help me. She recommended management through lifestyle factors instead.

When a MAV crash strikes, I feel as though I have some terrible illness or condition that drains every last bit of energy i have, like chronic fatigue or adrenal fatigue. Blood tests all return fine. It’s just part of a bad MAV episode, it seems. Rest is the only thing that helps until MAV fades into the background again.

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How did you find 5000mg d3? Did you mean 5000IU?

15

Hi @ni_sm, I’m going to jump in here because I happened to see your post. I am sure that the poster meant 5,000 IU of Vitamin D. (That value in milligrams would be toxic, I believe.)

I take 2,000 IU of Vitamin D per day. It’s easy to find in that dosage in the US, and it’s an inexpensive vitamin.