Narcolepsy/Migraines/OCD interactions?

Posted by silroc @silroc, Mar 3 11:07pm

I'm wondering if anyone has any experience with the interaction of Narcolepsy, OCD, and Migraines. My wife has been diagnosed with all three, and for the past five years, we have tried to get them under control – but any time she takes a medication for narcolepsy it intensifies her migraines, and any time she tries a new medication for the migraines, it sends her OCD out of control, and so on around the circle.

The Sleep Center she was being seen at essentially told her they had tried her on all of the available medications and did not have anything further to try. Her migraines have (mostly) gotten under control but at the cost of her other problems. Her sleep schedule is completely out of control, with her sleeping 12-18 hours each day, generally falling asleep around 4-5am and waking up in the evening around 7-9pm. She has been unable to get or keep any sort of employment, and has slipped into depression.

We're at our wits end and don't know where to turn to try and get her help. Any suggestions would be massively appreciated.

Hi @silroc, and welcome to Mayo Clinic Connect. What an awful cycle to have to go through. I have read that both OCD and sleeping disorders can cause migraines.

The Association between Migraine and Types of Sleep Disorder – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313424/
Obsessive compulsive disorder and migraine – https://pubmed.ncbi.nlm.nih.gov/18802664/

I would also like to invite members like @rpg @gingerw @dorisena @sears @Erinmfs who have mentioned OCD
I know that @rebeccamiller suffers from migraines and narcolepsy. I am tagging her in hopes she may return and join the discussion.

Have you already or have you considered taking her to a larger medical center to get a comprehensive workup?

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I don't know as I can be much help from my experiences as i have little faith in medicines for sleep disorders because if a person is sleeping too many hours, obviously the pills are drugging them, in my opinion. I found that less caffeine is better, and i solved my sleep problems with exercise and working on the stress in my family life. I do not recommend sleeping with a spouse with a sleep disorder or snoring problems. I know nothing about migraines and have never experienced them. I have had trigeminal neuropathy and refuse meds because I can't get out of bed. I use pressure on the pain areas and the pain goes away. I have benefited from the needles stuck in me but it is expensive. It doesn't hurt! I continue to practice relaxing more often. Dorisena

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@dorisena

I don't know as I can be much help from my experiences as i have little faith in medicines for sleep disorders because if a person is sleeping too many hours, obviously the pills are drugging them, in my opinion. I found that less caffeine is better, and i solved my sleep problems with exercise and working on the stress in my family life. I do not recommend sleeping with a spouse with a sleep disorder or snoring problems. I know nothing about migraines and have never experienced them. I have had trigeminal neuropathy and refuse meds because I can't get out of bed. I use pressure on the pain areas and the pain goes away. I have benefited from the needles stuck in me but it is expensive. It doesn't hurt! I continue to practice relaxing more often. Dorisena

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I do believe in medication for serious OCD and have seen friends with improved lifestyle as a result, especially those in executive positions. It takes a willing attitude for change in behavior, and the meds can make the job easier. I feel I have some healthy obsessions which I control by throwing myself into my favorite craft projects or music interests. I am not a happy person when I can't do my favorite projects because I need to accomplish things, not just eat and socialize in life. Most people do not need medicine, I think. If there are several family members with OCD, then meds may be in order. My sister's family all have OCD and that may be genetic. Dorisena

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Thank you @amandaburnett, for tagging me in to this conversation. @silroc, this can certainly be a challenging situation, and as a caring spouse, I bet you feel helpless to get remedies. My first step was a complete physical, to rule out anything medically wrong as a causitive factor.

For migraines, I tend to stay away from strong meds if possible. Has your wife determined what is undermining her efforts and contributing to the causes of those migraines? Stress, blooming things [especially this time of year!], foods with certain ingredients, changes in the weather? Keeping a journal to track triggers could be a big help to you.

For sleep disorder, again, it takes careful patient analysis – make it a project. Sleeping too much, so that your body goes beyond restorative sleep, seems to work against you. Experiment what works best to get to a restful state with as little chemicals as possible. Meditation, a quiet pasttime like journaling or crochet [I can fall asleep in 20 minutes after working on a crochet project!] or a natural sleep aid like melatonin. Perhaps some light exercise. Some nights, falling and staying asleep is more difficult than others. My cat knows when there is head stuff going on, and she glues herself to me; petting her helps me relax.

As @dorisena mentioned, you can be OCD about positive or negative things. Again, a project to really sit down and look at what activities are considered OCD. Has your wife worked a professional to see the best way to modify behavior? Sometimes tweaking an activity just slightly will make a big difference in more than one area.

I hope this helps, and please let me know if you have additional questions!
Ginger

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