New diagnosis, new med, and a big THANK YOU to Marie-Johanne

Hi All,

It has been a while since I’ve posted here. I do lurk at times to see how you are all doing. My lurking led me down a new path that brought me to a new diagnosis (in addition to MAV) and a new med that seems to help with both my newly diagnosed condition AND my MAV symptoms. I’ll tell you my story, but first I want to send out a HUGE THANK YOU to Marie-Johanne for inadvertently triggering my new investigation that led me here.

Seeing MJ’s posts about her success with Ritalin sent me on a research expedition. In my web search, I had a few hits regarding the successful treatment with Ritalin of patients with both migraine and narcolepsy. I said to myself, “Well, I don’t have narcolepsy; I don’t nod off uncontrollably during the day. I just sleep like crap, dream like crazy, and am tired as heck.” This is nothing new; I used to go home and nap at lunch time back in high school (20 years ago) and when I was in the military. I still nap in my car at work on a bad day. It has been worse the past two years because of the fatigue associated with MAV. Well, after doing some reading, I discovered that you don’t have to nod off uncontrollably to have narcolepsy, which is just one severe symptom. I have several of the other symptoms, so I talked to my doctor about giving me a prescription for Ritalin to try. My GP is ignorant about both MAV and narcolepsy, so she wasn’t comfortable giving me the prescription. However, she did give me a referral to a sleep specialist, who happens to also be a very experienced and knowledgeable neurologist. After an overnight sleep study and a daytime multiple sleep latency test, I was diagnosed with narcolepsy. No wonder I’ve been so darn tired all these years!

I am now taking 10mg of Adderall XR in the morning. This works much like the Ritalin MJ is taking. I am on day 4 of the new med and I must say I feel more like the old me again! Fatigue and brain fog are two of the most debilitating symptoms of both MAV and narcolepsy, so to have them relieved feels wonderful! Yesterday, I had a bad migraine day as the result of setting off too many triggers. What is nice about the Adderall is that it helped me push through and make it through the workday when normally I would have needed to go home and go to bed on a day like that. I still had some vertigo and visual aura, but the fatigue and brain fog were managed with the help of the med.

For now, I am still taking Zonegran and Zoloft as migraine preventatives, both of which have helped some. I also need to continue to manage my diet and sleep. Hopefully, this new “cocktail” of meds will help me to have more consistency from day to day. At the very least, I won’t have to feel like a Zombie so much of the time anymore.

Thanks again for posting your story, Marie-Johanne!

Marci :smiley:

WHEEEEEEEE!!! :doing happy dance: I’m SO happy for you and know EXACTLY how relieved you feel! Isn’t it grand to actually have the energy to push through?

I wasn’t tested for narcolepsy. Daddy had it, though - but he was the kind that simply nodded off mid-conversation. VERY frustrating. Like you, I didn’t just nod off - but have ALWAYS needed naps and relished them. I’d be curious to see how that test would turn out.

And if you ever have any question on whether or not it’s working - just forget your morning dose. I can also tell when the meds have ‘left the building’. I was also told that Ritalin might be helping me a little with my spondylitis pain, as well. The reasoning? Ritalin helps focus with the forefront much better and tries to ignore confusing signals and background noise. I can’t say that it’s helping all that much (forgot my arthur itis meds yesterday morning and by noon, my bones were hurting…EVERYWHERE).

Wow…I’m delighted for you!

— Begin quote from “marie-johanne”

I wasn’t tested for narcolepsy. Daddy had it, though - but he was the kind that simply nodded off mid-conversation. VERY frustrating. Like you, I didn’t just nod off - but have ALWAYS needed naps and relished them. I’d be curious to see how that test would turn out.

Curiosity and my desire for a prescription motivated me to take the test recommended by the specialist. My mom has narcolepsy too. She’s never been tested, but she has my same symptoms plus she nods off like your dad. I’ve always joked about my crazy sleep habits and have had some fun telling about my insane dreams. However, the daytime fatigue has never been any fun. Adding MAV fatigue and brain fog to the mix really took the wind out of me. I am a very detail-oriented analyst, so the migraine fog that settled in two years ago has been very challenging and frustrating for me. Thankfully, Adderall may be clearing out the fog so I can work to my former potential again! Won’t my boss be happy!

Do you still nap while taking Ritalin?

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— Begin quote from “MarciM”

— Begin quote from “marie-johanne”

I wasn’t tested for narcolepsy. Daddy had it, though - but he was the kind that simply nodded off mid-conversation. VERY frustrating. Like you, I didn’t just nod off - but have ALWAYS needed naps and relished them. I’d be curious to see how that test would turn out.

Curiosity and my desire for a prescription motivated me to take the test recommended by the specialist. My mom has narcolepsy too. She’s never been tested, but she has my same symptoms plus she nods off like your dad. I’ve always joked about my crazy sleep habits and have had some fun telling about my insane dreams. However, the daytime fatigue has never been any fun. Adding MAV fatigue and brain fog to the mix really took the wind out of me. I am a very detail-oriented analyst, so the migraine fog that settled in two years ago has been very challenging and frustrating for me. Thankfully, Adderall may be clearing out the fog so I can work to my former potential again! Won’t my boss be happy!

Do you still nap while taking Ritalin?

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Sometimes, I do. And usually it’s during weather that’s more likely to affect migraineurs or those with osteoarthritis.

It’s nice to be able to, say, make dinner then eat without feeling like you need a nap in between. LOL

You’ll find that you’re less likely to eat, now, to make yourself feel better.

— Begin quote from “marie-johanne”

You’ll find that you’re less likely to eat, now, to make yourself feel better.

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Good! Because, that has been a vicious cycle for me - eat because I think it will make me feel better, which is usually does temporarily, then feel worse because I ate something I shouldn’t have! Ugh! :?

Hey Marci,

You’re on a really interesting med combo. Is the Zoloft not working as well as it once did before? What percentage are you functioning at these days?

I just got back from the doctor because, frankly, I’ve been having a crisis every other week lately. She thought it was a good idea to revisit lexapro, wrote me another script for valium, and said we could try neurontin after the holidays. I was offered a free H1N1 flu shot too but was too freaked out to have it in case I have some weird-ass reaction. I just couldn’t handle that right now.

Scott