Hemiplegic migraine

After first episode, they did MRI and CT scans and no blood clots in brain, which would be present if a TIA had occurred. TIA's also affect just a small part of the body, not the entire side of the body - similar to a stroke. But in my case, again no blood clots evident, hence no stroke. The Topomax has obviously had an affect on the migraines, as they have subsided significantly. down from several a day to none (knock on wood) to none in the last three days.
I'm working with a neurologist and general practitioner. They ruled out TIA's from the start.
Thank you for your comments

Finally! I am self diagnosing myself as hemiplegic migraine because the doctors here don’t seem to know anything about it. I have had a few strokes, but they are not the cause of my symptoms. I do not have MS. But through investigation, I’ve discovered the only other thing so far that can cause numbness on 1/2 of the body, plus an unbelievable amount of other symptoms, is what is called a hemiplegic migraine. I have also seen it referred to as a full body migraine. It’s been progressing for four years, and it was terribly frightening not knowing what the heck is going on. After four years of doctor visits, and all sorts of testing, even the psychological test, I’ve come to the conclusion by myself that it’s hemiplegic.

I don’t know if you are still on this forum, but I would love to talk more about this with you. I’ve been so alone through all of this. It’s unbelievable what is taking place in my family life.

Again, I have not been officially diagnosed because no one around here has even heard of it or acts like they’ve heard of it. My symptoms are getting greater and progressing. They vary from one to another. I have not felt 100% in a long time. If you’re still following your posting please respond, I would appreciate it. Thank you

Mine just started about a month ago and am working with a neurologist who is bringing in a cardiologist, as through a heart monitor, they discovered that I have a slight afib in my heart. The neurologist is convinced that the issue is that the afib is restricting sufficient blood flow to my brain which causes the hemiplegic migraines. Through MRI's and CT scans, they have ruled out any clogged vessels in the brain, so it is the heart not getting sufficient blood to the brain. They have me on Topomax which has slowed down my symptoms significantly, blood thinner (to prevent clots forming in the heart due to the afib), and keeping my blood pressure up as well as my pulse, which gets a bit low at times.
One test I'm not looking forward to is a sleep deprived EEG. I have to stay awake all night, then go in the next morning for them to put on the EEG cap and let me go to sleep. Not sure if I can stay awake all night, although there are nights I feel like I stay awake anyway.
Hope my comments help and let me know if you have more questions. On a positive note, to take something from Chrysler commercials, "We have a Hemi in us!"

Lol. Hey, does that thing have a hemi?
Thank you so much for your reply. I truly appreciate it. As for the a fib, I did have a two-week heart monitor that I was wearing and there is nothing of any sort of an issue with my heart so that has been ruled out. As for the EEG ,I had that and it showed no signs o of Seizures, etc. And you really don’t have to stay awake all night, not at all. You just have to be kind of tired so you can fall asleep for about 20 minutes. If you think you can do that, I wouldn’t stay awake all night. I had no trouble falling asleep. That’s me personally. The longer it takes for you to actually fall asleep for about 20 minutes, the longer it will take for the test to be completed. As for the bright lights, your eyes are closed but my gosh are they bright. It doesn’t hurt you so nothing to be afraid of. They are just unbelievably bright. It’s not like looking into the sun with your eyes open. As for MRIs and CT scans, I have no clotting. I’ve been through all of that and it sounds like you’re going through it now yourself. It is interesting that you mentioned that medication, I do understand it may help. But just an hour ago I deleted the information I had on that medication because I decided I didn’t want to take it. The reason for me is because a lot of the potential side effects are exactly what I’m experiencing and if I take that medication I won’t know if I’m having side effects or still experiencing my symptoms.

Let’s stay in touch!!!

You may be correct on the EEG prep, but I want to follow their orders just to be sure. A couple of weeks ago I had an episode that lasted about 30 minutes while in the neurologist's office. Four female staff had fun lifting me from a chair to a bed so they could hook me up to an EEG. They got about 10 minutes of data - don't think they learned anything. Yes, let's keep in touch on our progress (hopeful progress). I want to stay on meds, as I want to get away from the symptoms so I can get back to a half- way normal life. Miss not being able to drive a car, but never know when an episode will hit me. You would think with a Hemi, we could power through anything! Oh, I'll ask the neorologist about other causes of hemiplegic migrines. He said he is treating a number of patients with this disorder.

I was just going to ask you if you experienced the paralysis. It appears that you do I don’t get that I get, among a lot of other symptoms, total numbing on my left side and just so many other things and yeah, they can get so intense as it spreads to my entire body that I’m put down in a chair for a day to days. Then there are several days of recovery. One of my triggers, which I know is a massive trigger, is using my phone like I am right now. Being on the Internet is risky on my phone or the computer, I can’t watch television, reading can be a trigger. Of course the only way to verify this is still locked in a dark room for two weeks. That’s not gonna happen. I experience this day in and day out and I pray that you get to the bottom of what you’re dealing with.

Thank goodness I'm not having your level of symptoms. My worst ones were paralysis on mainly the right side and slurred speech. Not sure of the trigger, as the first time it happened, I was just falling asleep. My wife and I were both convinced I was having a stroke, but by the time the EMT's got here, it was over. She drove me to the ER and they did some tests, which all came back negative. My first clues were just some numbness in my right leg and arm and I just though I had pinched a nerve and they had gone to sleep, but went to the ER anyway . That was when they kept me overnight, did the CT and MRI and found no blood clots, so ruled out strokes. The longest my episodes have lasted is 30 minutes and that has only been maybe once or twice. 10-15 minutes is the norm, thankfully. I just sit quietly and they go away. I'm using my computer to reply to you, as using my phone does make me concentrate harder and increases headache, but not sure if it triggers anything.

I am experiencing an episode right at this moment. It’s interesting that I finally found somebody that calls him episodes as well. It started out with the left side of my body going numb and now it’s my entire body just tingling and numb and I do what you do I just sit here. I might look fine and people don’t understand what I’m going through but I just sit here and wait. I’m speaking this into my phone with my eyes closed so I don’t see the screen. I won’t be going back to correct any mistakes. I’m sorry if it makes it difficult for you to read.

When I feel an episode coming on, my wife knows it, as I say, "ah, SH__" then my speech starts getting slurred. As I mentioned, thank goodness it only lasts about 10 minutes and it seems the Topomax is doing it's job of making them fewer and less intense. So don't you have slurred speech? I hope you have a screen reader and your wording is fine.

No, I don’t have slurred speech I don’t lose coordination. The reason I lean towards a hemiplegic is because I get the full numbing and just the left side of my body. It’s the only other thing I’ve ever found that explains left side or right side, numbing and tingling, but over the years it’s progressed to my entire body, but still with my left being predominant, and I’m still kind of in the episode. And then it takes who knows how long to recover from it.