Migraine

Hello everyone, my name is Meredith, I am 31 years old and have been dealing with some type of Migraine for the past three years.

The reason I say some type is because doctors still have no clue what it is. I'm thinking it is Hemiplegic Migraines because not only do I deal with severe right brain headaches, sensitivity to light, but I also become very lethargic and the left side of my body becomes paralyzed!

It started three years ago, I woke up unable to move the left side of my body, when my parents came home I was rushed by ambulance to the ER - still not able to move..I had CT, MRI, EEG, MRA, and all the results came back with nothing showing up. At the time the doctors thought it was a TIA and I was transferred to another hospital for rehab (three weeks).

A month later I had another attack but this time I was already at the rehab unit doing my exercises. They noticed my "spacing out" and that it was taking longer for me to answer them, yet when I did it was with no emotion (I sounded like a robot). MY Occupational Therapist I was working with at the time thought I was having a stroke - I was wheeled down to the ER and by the time I got down there I couldn't move the left side of my body.

They kept me in the hospital for a week, sent a shrink to see me - who made the diagnosis right there that I had conversion disorder, and pretty much told me to "snap out" of it and deal with my dad's death (he had died the previous month after a 2 yr battle with esophageal cancer).

While at the hospital I was in a private room (ICU maybe)because I couldn't move and by this point lost the ability to talk. I was in a huge amount of pain and needed some of the good stuff (dilaudid). It took me 4 hours to get a nurse to come in the room to tell me to quit playing with the call button and I needed to speak up cause she couldn't hear me! I got so mad at her that I threw the metal bedpan that was close by at her (missed her by a mile).

Since 2006 I have been hospitalized 8 different times, the doctors have no clue and keep running the same tests on me. This last time July 28th I also lost the ability to talk and move the left side of my body, so off to the ER and more of the same tests (getting OLD). I was in the hospital for 48 hours total. The nurses were great and most of the doctors too. But, I had one intern ask me "Are you faking it", "Are you upset about anything"...hello yes I'm upset at you - you moron. I wrote it to her and told her either give me a treatment or get out of my room! That night I was able to start talking, and eating...I hadn't been able to keep anything down all day. I asked the nurse for pain medicine, and told her Tylenol doesn't work for me anymore - I have chronic pain issues before this started. I asked for dilaudid because I have issues with Morphine. She went to talk to the doctor and get something for me. Came back with something other than Morphine but explained the doctor didn't want to give me Dilaudid!

The next day when the doctor came in she asked how I slept and I said "I didn't, I was in too much pain to sleep". I than asked her what the point of writing out what medications I take for pain and such when she ignores it? She said "we don't give dilaudid because it's more powerful and more addictive than Morphine". Another shrink came in that afternoon, and after doing stuff and talking with mom who was right there told her - I see she has a history of depression, I believe she is depressed and caused this whole thing...looked at me and said "do you understand what I am telling you, this is your own fault, and proceeded to tell mom I needed anti-depressants" needless to say both mom and I told him to leave and not come back.

I have an appointment with my neurologist on Wednesday at 11:30am, I really like him, he listens to me, and answers all my questions. I'm very into medical field and because of my being a dwarf - having spent a good hunk of my childhood in and out of hospitals I sorta know my way around medical speak. So, I ask him a good bit of medical questions the average person wouldn't dream of asking.

I also was diagnosed last fall with Reynaud's Syndrome (anything cold - cause my hands to turn 3rd degree burn red, swell, itch and burn). I was given Nifedical XL (it's a blood pressure med) to help dilate the blood vessels in my hands. A neurologist I saw shortly after the hospitalization for follow up (my doc was on vacation) saw my updated medical file and stated that I should take it daily now to help with the migraines! Since that time - I've had maybe 5 good days with no migraine.

Other than my neurologist there is no one in the state of Delaware that takes me seriously, they all seem to think I'm some druggie looking for a way to get high! Because I live on the east coast - halfway between Philly and Baltimore, can someone give me a name of someone I can see about this? The migraines are getting worse each time - I've since lost my hearing in my left ear as well as peripheral vision too.
Not to mention I hadn't been back to my job as a volunteer at an ENT office the whole month of August! Has anyone heard of the Johns Hopkins Headache Center?? I saw them online and was wondering if anyone has heard of them or their reputation.

My entire life has changed - I can't plan ahead for things because I never know when the migraine will attack, or how severe it's gonna be! I try to keep active by going to the gym and working out two days a week with a trainer but even that has become side tracked on more than one occasion.

I am hoping to get genetic testing done to see if I do have the "wacky" gene for hemiplegic migraines, go somewhere I know can help and I'm gonna be brushed off for a simple diagnosis of "it's in your head" and it's your fault, you're causing this" there is nothing wrong with you, deal with it.

Ugh, it's one thing after another.


I've been having the "staring" episodes all my life, simply focus on something (usually to the upper left) and stare at it for maybe 30 seconds...but it happens anywhere I am...room, family's houses, crossing the street, etc. I was tested for epilepsy when I was younger and had the 24 hour brain wave recordings done...but nothing came about. Could this be a precursor to when I migraine starts?

Well I will close this very long posting...wasn't sure where to post it all. Sorry.

Meredith

Hi Meredith,
Welcome to the forum! I'm glad you've found us. I really hope you can get some answers from here. I don't have hemiplegic migraines so I really don't have much advice to give you, and I'm a lot further north than you are too, so I don't know what kind of specialists there are specifically for hemiplegic migraines in your area. Here is a list that's on this site of recommended specialists Patient Recommended Migraine and Headache Specialists There is also an entire discussion section set up here about Hemiplegic migraines, maybe you can find others with similar stories like yours.

Best of luck in finding some answers. And we hope to see you here often

Meli

Hi Meredith,

I am new to this site as well. I suffer from hemiplegic migraines. I also lose left side body function with some of the headaches. I have lost the ability to talk at times, lost the ability to swallow, and have states of confusion. I am searching for a new doc as well. I am tired of being treated like a drug seeker too.

Hopefully we will both find treatment and answers to out situations.

Best of luck.

Michelle

Hello and welcome to our forum family, Meredith and Michelle! 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 see Meli gave you the link to our physician directory, Meredith. I also assume that since you mention being between Baltimore and Philly that you're willing to travel. Now, I do live pretty much on the wrong side of the country to have any experience with doctors and clinics in your area, but I can tell you that we have had many members here that have been treated at the Jefferson clinic in Philly with good results. Teri's worked with Dr. Young there for a lot of years. It's been a while, I believe, since anyone's mentioned Johns Hopkins, but perhaps someone who has been there will be along to comment soon. I DO think that based on your comments about the doctors you have been seeing not having any idea what kind of migraine you're having that it's more than time to move on to a true migraine specialist in order to get a definitive diagnosis, so that you can find a definitive treatment. The way they treated you at the hospital was flat out atrocious. You deserve better than that.

While we can't diagnose, I can tell you that hemiplegic migraine is the only type of migraine that involves one-sided paralysis. That said, just because you have one-sided paralysis along with a headache, that doesn't necessarily mean it's hemiplegic migraine. It could also be something else besides migraine, that's happening concurrently. You really need a good specialist in order to get this sorted out and get a definite idea of what you're dealing with. It can never hurt to have particular "paths" you want to explore and rule in or out, such as hemiplegic migraine. You just have to be careful not to self-diagnose in the process. I think the genetic testing idea is jumping the gun, but that's my humble opinion. Migraine is a genetic disease, and if you present with enough hallmark symptoms to get a specific diagnosis from a true specialist that knows migraine, getting tested for specific genes or markers is overkill, at a substantial expense. That's my two cents, anyway. If you'd like a direct link to our pages on hemiplegic migraine, you'll find it HERE. If you'd like a link to a page that has all of our different basics articles on different headache types, it's HERE. . That might give you some things to think about and some good knowledge ammo for your trip to see a specialist.

Do let us know how it goes, okay?

Hi all,
Thought I'd give everyone an update on what's going on with me.

I had my appointment with my neurologist about the constant headaches and the migraines. He did say that the left side is even weaker than what was thought. I also explained to him about the left arm shaking and even though I noticed it - nobody else could see it. Well, he felt my arm and could see my hand shaking!

Changes were made to my medicine:

Added:
Compazine - abortive
Nortriptyline - preventative
Asprin - daily

Deleted:
Nifedical - stop taking it daily

Because of the twitching, shaking and left shoulder and neck pain - I will be going in for my millionth (or so it seems) MRI with contrast next Wednesday - Sept 16th to see if there is a pinched nerve in my neck that is causing the neck/shoulder pain as well as the muscle twitching (bicep) and hand shaking.

He also recommended that I go up to Jefferson Headache Center! I need to make a call and get the ball rolling up there! He's got several patients that have gone there with good results.

I asked him when should I go to the ER with the "complicated" (his words not mine) migraine attacks. He replied "if there is a new symptom (speech issues), and to wait it out for 10 minutes, however if my alert status goes down, having problems breathing to go to the ER. When I asked him which ER to go to (three local hospitals) here and he only has privledges in one of them. He stated if you don't mind coming to my hospital ER it would be better.

I don't mind his ER since the other two ER/hospitals seem to think I'm nuts and I think they are getting tired of seeing me. Not to mention the first neurologist I had (whom I subsequently fired) has privledges at those hospitals.

Not planning to have to go to the ER but it's at least good to finally have a plan of action, and some meds that hopefully will combat the frequent attacks. He knows not to prescribe triptans for me..and when he wrote out the script for the preventive medicine - I double checked with him that it wasn't a triptan. He assured me it wasn't - so I finally found someone that is really going to bat for me.

Meredith

Hi Meredith,

Welcome to MyMigraineConnection.

In no way, shapre or form are these "headaches" all in your head! Clearly, you are having some real pain and it needs to be taken care of sooner rather than later. You mention the fact that you are having constant headaches? Do you have them every day?

Your neurologist is right on the ball. He is suggesting that your case is too complicated for him and needs a Migraine specialist - now. An accurate diagnosis is imperative for purposes of treatment, learning about your Migraines, being able to get care if you're away from home, etc., you need a full diagnosis of what type of Migraine you have. You can read more about this in The Type of Migraine Does Matter.

Hemiplegic Migraine (HM) is difficult to diagnose and may be confused with other neurologic disorders, stroke and epilepsy that's why it is so important to have an expert take a detailed medical history and do a full neurological exam. Take a look at the article Migraine and headache specialists - What's So Special?.

Please let us know how you make out, ok?

Hi Nancy:
Thanks for the info links you gave me. To answer your question yes I am getting headaches daily..although they aren't severe enough to make me lose feeling on the left side.
It is a constant headache (rates an 8 or 9 on the pain scale). My energy is so sapped and I have a hard time concentrating on the issues at hand. It's been constant since July 28th - which was latest hospitalization. I am volunteering at a ENT office and have missed the entire month of August due to them, I also missed the past week because of them.
I've run through MRIs, MRAs, CT, EEG, EKG, etc..and everything has come back normal. Most days I've gotten up and have crawled back to bed and pretty much slept off the headaches, or the pain has lessened to some degree.
I'm starting to think that the more severe headaches are impending signs of things to come (major migraine with complete left side paralysis). I get some warning signs, but right now the side affects of the preventive med (Nortriptyline) that I started taking last night has a host of side affects that seem to be a carbon copy of what I usually experience, so for the moment not sure what is a medicine side affect and what is the warning sign of a "complicated" migraine attack.
Hopefully I get into Jefferson and find out once and for all what I'm facing. It's not a brain tumor (too many CT/MRI scans to rule that out), EKG (my heart and valves are fine), no epilepsy (EEG done), so just hoping something turns up, cause I want my old life back, the old on the go - things to do, people to met kind of personality that I once had. Right now about 99% of the time I simply want to be left alone and to sleep in a dark room. At least wearing hearing aids (aka. my ears) I can tune out the sounds when I sleep. I also wear a night mask to aid in keeping the light out of my eyes in my room.

So right now it's back to bed and the dream and hope in a better tomorrow!

Meredith