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Narcolepsy And Migraines- Is There A Connection?

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#1 squirrel!

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Posted 21 August 2013 - 08:20 PM

I was sent to a sleep center after struggling to take any migraine preventatives. They made me so undeniably exhausted that we realized there was a bigger issue going on. ( I had always had excessive daytime sleepiness, but always thought t was a mom thing or an ADD thing)
so, I'm curious how many of you suffer from both? has any Dr ever mentioned a correlation?

#2 sk8aplexy

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Posted 21 August 2013 - 09:47 PM

It's definitely common in Narcolepsy to experience Migraines.

The non-restorative sleep definitely plays into it, in my experience and opinion.

As I've gotten older, and juggled a lot of other elements of things (allergies especially, as well as neck/shoulder aches/pains) I've managed to decrease the severity as well as frequency, very thankfully.

Yet, I still get them often to various extents.

 

As for ADD, it is a common misdiagnosis, but that is not to say it isn't also a often comorbid condition, as well...

 

There are a lot of comorbid conditions that occur, randomly yet often, to those with Narcolepsy.

Here's an image I came across, not super helpful, but it does name various comorbid conditions:

http://www.springeri...419-0854-4_10-0



#3 DeathRabbit

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Posted 26 August 2013 - 05:19 PM

I've been doing better lately, but I suffer with pretty regular headaches and brain fog sometimes.



#4 ironhands

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Posted 26 August 2013 - 06:22 PM

I've been wondering if gluten might be an issue.  I've been looking into gluten issues for a little while now - one of the many things I investigated to explain why I'm always so damned tired - and there's been some research into gluten sensitivity and autoimmune issues.  Since there's also a connection between N and autoimmune issues, I wonder if there could be a connection.  In the western world we're pretty much force-fed wheat/gluten from birth, so there wouldn't be much of a control group, but I wonder if it would make for a good study.

 

Slightly OT, yes, but the comorbidity document reminded me



#5 sk8aplexy

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Posted 26 August 2013 - 08:51 PM

For over a year now I've been Gluten-Free, as well as near entirely also Dairy-Free (I'll occasionally, like once a month or each few, eat a bit of cheese, for instance on a gluten free pizza - but I react with headaches and also respiratory matters from dairy, somehow -caseins?-).

Figuring out my allergies, juggling them for years trying to limit the exposures and also avoid them, has been huge; but such is no simple, nor little task. 

That goes with changing diet in such dramatic manners.

I will suggest cooking basically everything that you eat, and of course buying as much organic as possible, as well as only local organic meats; Ferret can go into depth, and beyond, here (I entirely support her suggestions and view).

 

The benefits have been huge though. 

I have many less headaches and my Cataplexy has also lessened, both dramatically for me. 

I still live in the same manner though, which is very much 'loner' style.  I do not have regular employment, I live with my Mother and help her out by cooking daily and doing other random stuff to help when I can manage; she helps me out in return and works super hard. 

One thing though, is that since the Cataplexy has lessened, I do experience/require daily naps because I find myself nodding off, usually mid afternoon, but it can happen any hour of the day. 

As long as I keep myself stimulated though, with some activity or diving into some interest/s, the sleep attacks do not seem to occur; never have I had them while with others, unless of course it is late and on top of that, been a long day of interacting...

 

It was something I considered for a couple of years, and was with a D.O.'s recommendation to go both Gluten and Dairy Free, along with cutting out sweets (which to this day I only eat occasional very dark 85%+ chocolate and raw honey is the only sugar, besides natural fruits, that I'll use, which is rare that I use), daily mile+ walks and I also do near daily stretching (yoga'ish) / breathing, exercises.  Oh, and I take -0- medications, however I do take Vitamin D, daily.

Very glad I went down the path I did, I dropped around 20 pounds I'd had on for maybe near 15 years, pounds that just would not go away..!

 

 

Go for it, but do, ease into it, as it does take time. 



#6 ironhands

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Posted 26 August 2013 - 10:46 PM

I go off and on gluten, depending on my mood and cravings.  I was treating myself for a suspected gluten intolerance long before I connected anything with N and did notice a huge difference, but, cravings and money get in the way so I go off of it for a few weeks and then back on.  I am employed, my symptoms are much lower than most here, I think, but I do spend most of the evening lying in bed watching TV.  This week has been rough but I've been glutened.  

 

After the connections I've seen tonight, I wonder why I haven't seen this advocated very much.  I'd mentioned it in a few other threads as being a decent tool to improve, I didn't realize there was a solid connection.

 

Also wondering why no other doctors I've seen has mentioned a link when I told them I (try to) cut gluten.

 

My mind is just completely blown by this "new" info.



#7 sk8aplexy

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Posted 27 August 2013 - 12:06 AM

In my own opinion, please agree to disagree with anything that I do say which may be discomforting perhaps...

 

A lot of people just consider it all, a fad (gluten-free, that is).  They laugh at it and have limited first hand knowledge and/or experiences of dealing with such. 

It is like eating 'organic' or going 'green,' yet with more stigma as it is newer, some consider it pretentious, and ignore the actual relevant aspects of it, being beneficial to some.

Many cringe at it, because they work in the food industry and have to take 'special request' and go, a bit to far, out of their way for something that seems to them, ridiculous.

 

I won't go into the food industry, I'll just say it has followed 'big tobaccos' lead/path (google such for articles)...

$ is the bottom line, unfortunately, in our society and culture.

 

A lot of doctors don't like speaking upon things which are apart from their required/guide-lined path/s, they are not always trying or able to actually connect such (deeply rooted) dots. 

When so many and so much is tied deeply within, as gluten is within our societies food habits (processed, store bought) and traditions (fast food, eating out in general), there is/can-be a real impact back at them when they scratch or interfere with such, even when that is there so-called expertise/job.



#8 Ferret

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Posted 27 August 2013 - 09:43 AM

There are believers and non-believers. We are all unique, with differing symptoms and severity of the same malfunctioning system. It's a long and frustrating journey finding out what works for you personally.
The fact that our bowel is the backbone of our immune system is now a known fact. We have an autoimmune disease that has destroyed our hypocretin/orexin producing neurons. The increase in many diseases of an autoimmune nature has been astronomical in the past thirty years...the same time frame that correlates with increased antibiotic use (in ourselves and in the meats we eat), the addition of chemicals to preserve or enhance flavour and appearance of packaged foods, genetically modified foods and increased pesticide use and artificial fertilization of the food we eat.
Lost your appetite yet?
Gluten is in more than just bread and pasta...it is an ingredient in many pre-prepared foods.
Somebody said, in a recent post, shop the OUTSIDE aisles of the grocery store...basic food...meats, veg, fruit and dairy. It's a good place to start. Even better would be an organic market. Prepare your food yourself so that you KNOW what's in it.
Some people are lactose intolerant...some are gluten intolerant...some are glucose intolerant. After eliminating all of those, it would appear that I'm not one of them. I do, however, react to chemicals...MSG (in all its many names), nitrates, nitrites, sulphates, sulphites and ALL food dyes but especially red. You don't really think that cheese is orange do you?
The normal flora in your bowel are an important eco system and it is an integral part of your immune system. If you take an antibiotic, it kills EVERTHING. Be sure to replenish your normal flora with a good probiotic.
A happy healthy bowel is the key to good health...or to minimizing symptoms of bad health...and THAT is within our own personal realm of power. Your mission (should you decide to accept it)...it is not impossible. Or, as my grade 7 science teacher said.. "The difficult we do at once...the impossible takes a little longer".

#9 hbananas

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Posted 14 September 2013 - 09:58 AM

I am in the process of investigating narcolepsy, so no verdict yet.

I have had pain behind one eye for the last 3 years.  Since I am already a neurology patient, having had transverse myelitis that has not had a repeat performance to call it multiple sclerosis, my neurologist has looked for things in my brain that might be the cause of the pain.  I do have some small brain lesions, but not typical of MS.  Migraines can cause lesions.  So can high blood pressure and too many birthdays.

After an MRA revealed a small aneurysm behind that eye, I have had angiograms and visits with neurosurgeons and neuro-ophthalmologists.  They all insists the brain aneurysm has nothing to do with the pain, they are saying it is a "migrainous process."

I also got diagnosed with OSA early in the MS investigation, and I have been on CPAP all along.

Migraine meds make my daytime sleepiness worse, and they don't do anything to the pain.  I am getting botox next week to see if that helps.

Long story short:  I have a diagnosed neurological autoimmune disorder, transverse myelitis.  I have what everyone thinks are migraines.  I might have narcolepsy.



#10 Cstarr2

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Posted 26 January 2014 - 04:23 PM

The main reason I was referred to a neurologist by my psychiatrist (which I had been seeing for years for social anxiety disorder) was because I was having extreme migraines. My Dr. Thought that these migraines were eventually leading to a "panic attack", two which had sent me to the ER. He kept saying some things weren't adding up, he didn't think it was a "pure anxiety attack". Sure enough, when I went to my neurologist, he reviewed my history and suggested I had N. I had the two sleep tests done and sure enough I was positive for N. I definitely think they have a correlation and I have noticed now that I am on Nuvigil and learning to manage my N, my headaches and migraines have become less frequent.