Headaches, Migraines, Muscle Twitching and Phantom Smells

[lefraise2002]

I am a 25 y/o female. And for about 2 years now I have been having some problems. It all started with what I thought was a headache which I took some otc meds for and went to bed, I woke up in the middle of the night and my head was pounding worse. I was neasous and dizzy and weak. I threw up and could hardly get up. I called an ambulance because I had never experienced anything like that in my life. I would get headaches on and off, but nothing a nap and some meds wouldn't fix. Sounds, light and movement also made it worse. In the er they told me it was a migraine and gave me someting for neausea and imitrex pills for the migraine. After that later that year (07) I would go on to have more migraines like once a month and would take the imitrex when I got a headache and it knocked it out in a few hours. At the end of '07 I realized that I had invouluntary movement in my feet and legs, it would happen more when I was in a resting state. I would also wake out of my sleep because I felt like I was walking or falling. And when I wake up my feet would twitch. Time continues to pass. It is '08 and I was driving in my car with the windows up and I started smelling cigarette smoke, it only lasted like a second or two and it was gone. I don't smoke and no one smokes in my car, I thought that was weird and I told my fiance and he told me I need to see a neurologist. A few hours after the phantom smell I had a migraine.I made an appointment with a neurologist and I had blood test for iron, thyroid and a few other things. My iron was a little low but everything else was fine. My CT scan was fine, my MRI was fine. I had an EEG but I could sleep or even get in a rested state. I didn't have a sleep deprived EEG and the area where I had the test was uncomfortable and I couldn't get the least bit comfortable. The EEG showed nothing. After the tests my Neurologist put me on Zonegran 100mg once a day before I go to bed and Imitrex shots if I had a headache. I took the Zonegran for 4 months and the migraines went away, and the muscle movement slowed down. After 4 mos. The headaches came back and the migraines did as well, the muscle movement increased in frequency, intensity and location. It started in the feet and moved to legs, stomach, arms and fingers. When I went back to see my Neurologist this year as a followup he took me off the Zonegran and ordered more blood work to recheck thyroid, iron and some other things. As well as a sleep study to see if I had RLS or sleep apnea. This time all of my blood work was at or above the level they should be. And my sleep study showed nothing abnormal. No RLS or sleep apnea. I am scheduled to see him again in July. I've been seeing the same Neurologist for about a year now and I still don't know what's wrong. My last migraine was two days ago and I had to leave my job in the middle of my shift. My muscle twitching or whatever it is, is getting worse and I'm tired of the migraines and headaches. I am really getting worried and don't know what is wrong. If a Neurologist as any info please respond. And if a member has info respond as well. Thanks in advance!

[Bmoody]

Wow! I wish someone would answer this! This is EXACTLY me too! I am 25 and have the same complaints. Right down to waking up in the middle of the night with an insane headache, ending up in the ER and diagnosed with a complex migraine. They thought I had a brain aneurism because I was losing my site, and my eyes were dilated. My arms were heavy/floating and I was terribly nauseas, along with my face going numb and tingling. I have been smelling cigarettes and ammonia, been having involuntary twitches in my shoulders and legs, headaches and more headaches. I also have arthritis though, so this is getting to be too much! I have been waking up with night sweats, just totally drenched. I don't know what to do. If they don't figure me out soon I will start to feel crazy. Nevermind, I already feel crazy. Well, there is two of us now....a reply would be nice.

[lefraise2002]

Bmoody, I am still not sure what is going on. I have been put on Keppra XR 500mg once a day. I've taken a 2 standard MRIs and they were both normal. I also had 2 standard EEGs and they too were normal. I also had the portable EEG done by my epileptologist to rule out epilepsy. And I wore that for a few days and that also came back normal. My neurologist thinks I may be having myoclonic sez. But I am unsure. But since this post I've had numbness in my left arm for like 3days a few months ago along with pins and needles feelings in my left calf. I wen to my PCP Bc I am not scheduled to see my neuro again until Nov. But he prescribed me neurontin. It worked...but it seemed like all the previous issues the keppra fixed came back. So I am no longer or neurontin. Still confused. What types of Drs are you seeing and what meds are you on?

[arcticlotus]

Hi, I have been living with migraines since I was at least 12. I am a 26 y/o woman, and was only finally correctly diagnosed 2 years ago.
I understand how scary some migraines can be, and how difficult it can be to get an accurate diagnosis when the symptoms can be dramatically different between attacks and people.

Prior to proper diagnosis I was popping acetaminophen like candy to no avail, and doctors did a fair bit of blood work, always coming back with "it's all in your head." It turns out that it is, just not in the way that those incompetent doctors were implying.

My attacks have ranged from classic to ocular to retinal to acephalgic migraines (or silent migraines) where I have aura (usually tunnel and vertigo), and other symptoms, dizziness, nausea, vomiting, partial paralysis on half of my face, fainting, tingling extremities, twitches, RLS, blurred vision, difficulty speaking (Broca's Aphasia, that was scary). No Headache. I always got better fast enough that I didn't bother going to a doctor until I was 22 and it was getting to be more frequent. No headache made the doctors just scratch their heads after the blood tests and send me away saying nothing was wrong. I have noticed my symptoms vary greatly depending on what trigger set me off.

The incident that finally got me a diagnosis happened after I consumed a chicken sandwich from BK with extra mayo and a handful of green olives (nitrates!). I took a nap after dinner and woke up without vision in my left peripheral (homonymous hemianopsia) which lasted about 20 minutes and a 48 hour headache followed that. I must be a slow learner, because it took an entire month of consuming mayo twice a week and enduring intense 48 hour migraines exactly 18 hours after consumption that I finally noticed the pattern in my migraine journal.

After proper diagnosis, I lived with intense migraines for a few more months before getting on propranolol. I'm normally a cheerful person, hate medication in general, and the depression that followed was too much, so I got off of it and vowed to find another way. Diet.

Most mayo is loaded with MSG, which is a very common migraine trigger. Unfortunately, MSG is in just about everything, and it hides under many names. Do some research and get used to reading labels on everything. I have become more aggressive about reducing my MSG, soy, and salt intake, and have experienced a significant drop in the number of migraines I experience. I used to have 3 a week, now I have 2 a month, and one of those is unavoidable (menstrual). Usually the other is heat induced or because I was bad and ate fast food that I shouldn't have.

I've been doing a lot of research lately about how MSG works in your body, and it makes a lot of sense that it would trigger a migraine attack. Unfortunately, the food industry LOVES MSG because it 1- increases insulin, reduces blood sugar, and makes you hungry sooner, so you eat more (hopefully of their product), 2- it tricks your brain into thinking that nutrition-empty food tastes great, which is supposed to be the brain's cue that food is nutritious, so they get to cheap out on the quality of the food they sell. It also makes you less sensitive to the taste of healthy food, which is why many people thing natural and organic food is "bland." It's not bland, your brain has been reprogrammed to think it needs more flavor. Find a store like Trader Joe's, reduce your intake of synthesized bad food, and you'll slowly feel better and natural food will taste better over time. I have read that some people took as much as 6 months to fully detox, so don't lose hope if you don't feel better right away.

The biggest reason MSG is bad: MSG causes neurotransmitters to fire (unfortunately, too much causes what I like to call a cerebral storm). Migraines increase stroke risk, and an excess of glutamate in the brain causes the nerve cells to die from overstimulation, leading to stroke.

Removing MSG and other triggers like sugar substitutes might not make you feel "perfect". Many people on a migraine-friendly diet are still dependent on medication because their sensitivity to other less-controllable factors is great. But enacting a strict, natural diet can really help most people. Good luck!