Migraine

Hello to all. Is there anybody here who suffers from migraines with depersonalization/derealization and/or sleep paralysis? I've been suffering from these symptoms on and off since 2006 (first time from July '06 to November 06) and the most recent from June '08 to the present date. Anybody else out there experiencing either of these two symptoms?

I never even knew there was a term for this, but I experienced this often when I was a child. (I started having migraines around age 6).

I never told anyone about it because I didn't know it was abnormal until I was older, but I can distinctly remember being someplace, such as the studio where I had dance lessons, and feeling like I was on the outside of my life looking in and that I knew I should know where I was but not really knowing where I was. It was scary.

Are there any therapies that can help with this?

I hope there is something that can be done to improve these symptoms for you.

Diana

Hello, Jesse, welcome to the forum. We are glad you found us.

I'm afraid I don't have any personal experiences with these symmptoms, but I wonder if some of it could be similar to the "Alice in Wonderland Syndrome":

Alice In Wonderland Syndrome - The Basics

Have you discussed these symptoms with your doctor? If not, please do.

Please take a few minutes to look at the Start Here folder at the top of the forum. Then, take a look at this article:

• Learning About Migraines and Headaches - Where To Start

Welcome again. We are glad you joined us.

Hi Jesse! I just wanted to stop by and add my welcome to the pile.

Are you on any type of preventive medications for your Migraines? There are over 100 medications that can be used for Migraine prevention and virtually endless combinations of them.

Migraine preventive medications: too many options to give up!

Welcome again! I look forward to seeing you around the forum

Once in a while I'll get some feelings that things are just a little too surreal around the edges with a migraine. Things just feel a little off, and details do funny things. I'm pretty sure it's always a harmless little shift in perception. Though it's not necessarily the same thing, I do know that it recognized that deja vu and jamais vu experiences have been noted with migraine.

I don't think I've ever experienced sleep paralysis, though I did have one very unusual and scary event one night a few years ago. We think it was more a combo of dehydration and electrolyte imbalance with a biggie migraine starting up, though. Thankfully, I've not had an episode like it again.

Thank you all for welcoming me to this board! I'm glad that I found it.

lawyerlee, I also didn't know there was a term for this but stumbled on it just recently. It's caused primarily by depression, anxiety, sleep deprivation, and migraines (or a combination). Many people have been able to recover from this with a change in lifestyle (healthier diet, more exercise). There is a lot of research being done at the University of London on this condition. According to a study done there, 33% of the people suffering from depersonalization are also suffering from migraines.

nutcracker, thank you for the info! I'd never heard of AIW syndrome until now, it doesn't quite fit with what I have but it's good to know that there is a definite link between migraine and perception. After seeing doctors specializing in neurology, internal medicine, ophthalmology, neuro-ophthalmology, and optometry, many conditions have been ruled out and I believe it's simply a really bad (and chronic) ocular migraine with these other two symptoms thrown in.

Laura, I'm currently not on any medication. I recently saw the chief of neurology as Massachusetts General Hospital and he suggested that lifestyle, stress, and diet may be the root causes of the problems so I will be focusing on those for the next little while. I've only tried the over-the-counter pills so far, but I will definitely look into medication for ocular migraines, thanks for the link!

dragondrool, depersonalization/derealization is actually quite common (to my surprise) and some people have to live with it every single day of their lives. Apparently it's very common for soldiers to experience this, not hard to figure out why. Sleep paralysis is quite a thing, and terrifies most people who get it. I still
haven't found another migraineur who suffers from SP, though two outstanding doctors (Randolph Evans and Oliver Sacks) have seen a few cases very similar to mine. Good to know I'm not the only one.

I'm glad you found some of the information helpful. I'm not too sure what you are experiencing as "ocular migraines," as there is no standard definition for that term. See this article for more information:

Ocular, Optical, and Ophthalmic Migraines

If you could ask your doctor for a diagnosis in terms used by the International Headache Society, it would help other doctors, and us, to know what you are dealing with.

Keep the questions and experiences coming. We are glad you are with us.

Hi Jesse, I suffer from panic disorder and have had it since I was around 6 years old. The main symptom that I get with the panic attacks is derealization. My migraines didn't start until I was in my 20's but I have noticed that a bad migraine can trigger a panic attack. Is it possible that you are having some anxiety and possibly a panic attack brought on by the migraines?

dengel

I have experienced sleep paralysis, but it was a side effect of some of the preventive meds I was on. It took awhile to figure out it was from the meds, and even longer to find out it had a name!

Not sure if that helps you any (since you're not on any preventives) but you're certainly not alone in experiencing it! You're absolutely right that it's terrifying.

dengel22, sorry to hear about you suffering from panic disorder. There's no doubt in my mind that anxiety and stress are linked to my migraines. When my anxiety and stress levels rise, the migraines worsen, sleep paralysis occurs more frequently, and depersonalization/derealization intensifies. I've been increasing my consumption of foods rich in tryptophan (to raise serotonin levels) with very positive results so far. Apparently there's a major link between levels of serotonin and anxiety, which explains the positive effects chamomile tea has on people with anxiety.

Definitely good to know I'm not alone in experiencing SP and have found tons of forums and message boards with people who suffer from it. Turns out my experiences are actually mild in comparison to many others. Many people even hallucinate or levitate.

Hi Jesse, I'm a fellow Ontarian. I have suffered from SP and hypnogogic hallucinations for many years, also had a couple of cataplexy attacks. The SP usually happens closer to morning for me and the HH when I'm just falling asleep. I usually see huge spiders coming down from the ceiling and I swat at them and hop out of bed and run. My poor husband. Once I saw a man standing at the end of the bed. It seems to come and go with me, no rhyme or reason really.

When I have the SP I will wake up and be unable to move and sometimes feel like I am being held down. I usually have something panicing me like thinking the house is on fire or someone is breaking in at the same time. Very frightening.

This is all self diagnosed however as I mentioned it to my G.P once and he looked at me like I was nuts so I never mentioned it again.

As for migraines, I've had them with aura since kindergarden. I didn't know until I was in my 20's that there was a name for these headaches. My parents never took me to a Dr. for them, they told me to put my head down for a minute and they would go away. Ya right!

Hope you find something to help and also know that you are not alone.

I get sleep paralysis, likely from sleep deprivation. I absolutely hate the feeling, although it does not freak me out like it did the first few times. I also get AIWS, which for me tends to be bad in the morning when I have not slept well and got a migraine in the middle of the night or early morning. For me, AIWS can be very distorting... walls too close, ceiling too close, everything moving of fluctuating in size and shape... all weird stuff. But sometimes I just get this profound feeling of dislocation, everything seems unreal or as though I am not connected to it. I suppose detatched would be the word to describe it. I am in a daze, and details seem crisp or entracing even, but I have difficulty following conversations and reading expressions. But really, sometimes after a few days of migraines, nothing seems right and my perceptions are all just out of whack... add in some sleep deprivation and it is not surprising it get even more odd. Very bizzaro.

Hi Jesse,

I go through all of what you describe. I almost had a panic attack last week on my way to work because my derealization was so profound, I was having trouble realizing that I wasn't asleep/dreaming. I was talking to myself the entire way to work; I should've pulled over. I did go through AIWS when I was younger. I don't get panic attacks so that was new for me.

I also have sleep paralysis, and I suffer from it frequently. I first had it when I was 14. In fact, I had an episode yesterday while I was napping on the couch. I have discovered that if I nap on the couch on my back when the temperature is warmer in my home I'll get sleep paralysis. Typically I hallucinate sounds, and often I will experience feelings that something is touching me. I have only ever once "seen" something. Used to be I'd hallucinate my bed moving. Thank everything that hasn't happpened in YEARS because it really used to freak me out. My favorite audio hallucination is when I can hear my toilet flushing repeatedly. If I could laugh in SP I would...I imagine some little hobgoblin's having a good time in my bathroom!

I have not noticed the SP correlating with sleep deprivation or stress, though I do suffer from insomnia and take Seroquel/melatonin to keep me down through the night. I also have CEBV with frequent migraines so I tend to sleep more than the average person anyway.

Hi Jesse,

I've never known anyone who had both migraines and sleep paralysis either, but I guess there must be more of us out there.

I get all kinds of migraines, with aura, without, with nausea, without, with confusion, without, loss of coordination, without and all combinations of the aforementioned. They come from stress, nitrates/nitrites and low pressure systems. I take Topamax for prevention and Midrin for breakthrough migraines. Topamax is an anti-seizure medication.

I also suffer occasionally from sleep paralysis, (I've had both of these since I was in my early teens and am 40 now) usually when I've moved onto my back in the night. There's always a feeling of an entity sitting on my chest trying to sufficate me. I used to think it was a ghost, so never told a doctor because I didn't want them to think I was crazy. Now that I know I'm not crazy, at least I can deal with it and maybe try and have some fun with lucid dreaming. I haven't found a pattern as to when these episodes occur, except now that I think of it, I do recall this happening a few times after a migraine episode, but who knows. I haven't had an episode since I started taking the Topamax. Topamax is an anti-seizure medication and I have read information which supports the relationship between migraines and seizures, however, have not found anything relating sleep paralysis to seizures or migraines. I think it's interesting that an anti-seizure medication is helpful with both of these problems.

Anyway, I'm glad that I'm not the only one.

C

Hi Angelpire! I just wanted to pop in and say welcome to our forum family! Our goal is to provide everyone with the information and support that we all need to manage our Migraines and/or headaches. To that end, we consider this a “safe harbor,” where nobody tries to sell us anything, and we all use “family-friendly” language so parents are comfortable letting their children read the forum with them.

Please take a few minutes to review our policies and guidelines along with the other information in the START HERE folder. For information about Migraines, a good article to begin with is Learning About Migraines - Where to Start.

I also trigger from changes in the barometric pressure. My Migraine Specialist put me on Diamox to help with my weather-related Migraines and I can really tell a difference

Welcome again! I look forward to seeing more of you around the forum.