Update on my ADD assessment journey with sleep disorder diagnosis

[Anonymous]

Short (or not-so-short) update:

Have had 3 assessment appointments with ADD specialist, at the last appointment he asked me to have a sleep study in order to rule out other disorders. He said a sleep disorder needs to be treated first and any residual ADD after that.

It took months to get my family doctor to take this seriously, even though I started having some serious sleep issues back in April/May. I had to call my doctor’s office several times to try to get them to refer me to a sleep clinic – I have never heard back from the first two they were supposed to refer me to (in my local city), and I ended up going to Toronto for my consultation and sleep study.

Consultation was in mid-September. Initial diagnosis: narcolepsy, deemed URGENT and I was booked for a sleep study within 1 week.

Followup appointment was yesterday (3 weeks after sleep study):

The sleep study was not conclusive about narcolepsy but because of family history (my mom) and clinical history, and extreme sleep fragmentation during the sleep study, he maintains it’s narcolepsy. Extremely poor sleep is one of the indications.

I’m having trouble determining what a “normal” sleep arousal index is – it can vary by age – but the study showed that I had 168 spontaneous arousals during the night, pretty much off the charts, and there was no reason for them such as periodic limb movement (restless legs) or sleep apnea, although I had one or two of those events. My sleep efficiency was about 65% (normal is 85% or higher) – that’s the amount of time you are asleep during the test. I’m not getting the restorative sleep that I need.

The thing about the arousals is that so many of them were not long enough for me to be aware of coming back to a wakeful state.

I found this interesting link about a study that was done with mice illustrating the effects that lack of “continuity” in sleep severely affects memory. http://med.stanford.edu/ism/2011/july/memory.html My husband and I are having an argument about whether my memory issues are deliberate or not. The polysomnograpy report for these events looks like a bar code, they are so frequent!

The sleep doc also said that the crowning touch on my diagnosis was the experimentation I did with my husband’s borrowed Ritalin. I’m not suggesting others do this, but if I had not done this experimentation on my own, I probably would not have made the connection with sleep issues and it may have been more difficult to diagnose. I had the right sleep guy at the right time (misdiagnosed 20 years ago at a sleep study), and thankfully my mom and my husband’s conditions contributed to the findings as well. I am really grateful for these seemingly chance happenings that worked in my favour.

Today I have started on prescription (no more borrowed meds from my husband!) of Modafinil (Provigil), which is specifically prescribed for narcolepsy, but which can be used for ADD. I also bought a gentle wakeup light by Phillips from Costco and used that last night – I really like it, it looks like it will be helpful with the problem of waking up in the dark and having to be fully alert.

I still have an appointment with my ADD assessment psychiatrist in early November. The sleep specialist (psychiatrist) says it’s definitely narcolepsy, that ADD is not to be taken seriously in this case. But he’s not an ADD specialist. He did say that my ADD guy was very smart to insist on the sleep study, and that the two of them were thinking in the same direction. So I am hopeful that my issues will be resolved fairly soon, from a double-sided approach.

The next step is to find a new family doctor, mine is useless. She definitely dropped the ball on this one, and is so judgemental that I fear that I’ve been categorized as a “problem” patient and one who is seeking drugs.

I don’t want to take drugs, I don’t want to be artificially enhanced. I just want to have a good night’s sleep, wake up refreshed, and be alert during the day. I don’t think that’s too much to ask for.

Does anyone have experience with modafinil or provigil?

REPORT ABUSE

[billd]

>>I’m not getting the restorative sleep that I need.<<

THAT IS ME.

I’ve yet to even SEE my results, any yet, I have received the bill……… OUCH!!!!!!!!!!!!

They just won’t tell me until my next appointment – NOVEMBER however one of the folks doing ADHD work with me had me sign some papers letting her request the results, and SHE will share them with me. HEHEHE.

REPORT ABUSE

[Anonymous]

My study report had been prepared, summarized and signed off, so I asked to take a copy home. It’s really interesting, They even included all the polys.. graphs so I could do my own little analysis, for example, what side I was sleeping on, when I kicked my leg (and even which one), etc. The bar code for the spontaneous arousals is pretty scary looking.

I guess we have to be open-minded that our issues might be sleep-related and not necessarily ADD. The sleep deprivation was becoming more impairing for me.

Today I feel like a normal person again (again in reference to the meds experiment I did), it’s so black and white I can hardly believe it.

Hope you get your results soon, bill. November is not that far away.

REPORT ABUSE

[Anonymous]

As of the moment, there are no known exact causes for narcolepsy. Scientists and other medical professionals are still researching what are the exact causes of narcolepsy. In fact, scientists and medical professionals believe that genetics can contribute to the development of narcolepsy when triggered with some undefined environmental factors.

http://sleepdisorders.dolyan.com/sleep-disorders Says that narcolepsy is one of the many sleep disorders that is a type of neurological disorder. Usually, narcolepsy starts to appear during adolescence or early childhood. There can be a lot of possible factors that can possibly cause narcolepsy, including hereditary, autoimmune reactions, and other environmental factors.

REPORT ABUSE

[Author]

Posts