Migraine

Hello,

I've recently undergone lengthy (and painful) tests, and finally been diagnosed with complex migraines. They thought it was MS at first, so I suppose I should be greatful. Although It is still hard for me to believe it is migraines. I suppose I just had a misconception of what a migraine is. I get headaches, but they aren't every head splitting. I thought migraines had to be painful beyond belief. I get headaches that hurt, but prob not the worst pain I have felt in my life. I get dizzy, sick to my stomach, I see black floaty spots, and get horrible vertigo. Sometimes I get confused and forget where I am, and my legs, hands, and feet will go numb, or I will get tingling and numbness in one side of my face. Anyway, I just never realized that migraines were more than just a really bad headache.

I go back to the Neurologist in a couple of weeks, and I hope they can do something because I am tired of feeling sick.

Hopefully I will find more info on these forums

Nice to meet you all!

Hello JWilliams and 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'm glad you're seeing a neurologist to help with your Migraines. To save yourself some confusion, take a look at the following article because Complex Migraines is not listed in the ICHD-II. In the field of Migraine disease and headaches, the gold standard for diagnosis and classification is the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II). You should be able to find the type of Migraine you have that fits the description:

Types of Headaches and Migraines

You're right, there are many different aspects to our Migraines, it isn't just the pain of the attack. Take a look at this article:

Anatomy of a Migraine

Again, welcome to the forum! It's really great to have you here and I look forward to seeing more of you. If you have any questions, please ask and we'll do our best to help

Welcome to MyMigraineConnection!

We are so glad you found us, but sorry you have to be here.....although the company couldn't be better!!

There seems to be a big misconception that Migraine has to be the "worst headache pain" one has ever experienced. I think you will find when looking around the site, there are so many types of Migraines and headaches disorders it is kind of stunning. People tend to think they have "sinus" or just another "headache" when in reality, it may be Migraine or menstrually related Migraine. Of course, it could just be a headache!!

How often are you getting a Migraine? Anyone who has more than 3 Migraines a month needs to have a conversation with their doctor about being on a Migraine preventive medication.

Please keep us posted on how you are doing, and if we can help you with anything else.

Hi and thanks for the information and responses!

I am having migraines or migraine symptoms everyday. I see spots almost each day, and have vertigo and almost a sense of things not being real on a daily basis. The tingling in different parts of my body is almost daily, along with random pains. I always feel like I have some sort of pressure in my head, or am on the verge of getting a headache. It really sucks, I always feel sort of off. Tired.

Last night, in class I got a bad migraine and was having trouble concentrating. By the time the class got out, I was so disoriented that when I was driving home, a couple of times I didn't know where I was. It only lasted a few moments, and then I was fine, aside from the pain. I did get a bad case of vertigo when switching lanes, and it felt like the world flipped and I almost went into the median. I was so relieved to finally get home.

They found a lesion when they did an MRI and said it was either migraines or MS. The VER came back borderline,at a 99, and so they did a spinal tap. They just gave me the diagnosis over the phone, when all my spinal tap stuff finally came back and ruled out MS.

Thanks again for the information!

Hi again,

It might have been better if someone could have taken you home last night, but I am glad to hear you arrived there safely. Driving with a Migraine is not only dangerous for you but the others on the road.

Did they happen to tell you what your spinal fluid reading was? Anything higher than 200 needs addressing and ask where the legion is? There is a condition fomerly, although still frequentyl called Pseudotumor Cerebri (PTC), now called Idiopathic Intracranial Hypertension (IIH). Some sypmtoms of this include intractable headache, ringing in the ears, a whooshing sound in the head, dizziness and vision issues. We have more information on this in the article: Pseudotumor Cerebri (IIH) - The Basics.


As far as the MS goes glad to hear you are ok. And make sure your neurologist is a specialist in MS. Neurologists treat so many different conditions, you want to have one that really knows MS so they can effectively rule it out. How long did you say you've had "headaches" for?

Yeah, I know, but I forgot my cell phone at home:/ I also didn't start getting really bad until I started driving, but yeah, I should not have been driving.

I have been getting headaches for the past year, but it has been rapidly increasing over the past 6 months. I really didn't pay much attention to the headaches because I just considered them headaches. I went to the doctor because my face and the top of my head kept going numb, and sometimes my arm as well, and of course the spots.

Sometimes my ears to ring, or whoosh. And I don't always have a headache with these symptoms. It is often just the vertigo, dizziness, and the sense of unreality. Last week I went to the ER because my right shoulder and right side of my neck was so sore that I couldn't move or bend my head. They gave me a muscle relaxer and vicodin, and it did nothing for me. It still hurt. Well, it made me feel disoriented, and sort of out of my mind, which I hate, but aside from that, it didn't help the pain at all.

My menstrual cycles are also very bad. The first few days they are so painful that I can't do much except lay in bed, and my head usually hurts during this time too. This happens also at ovulation. So, pretty much I am ill everyday.

It took them 2 1/2 months to get the results back to me on the spinal tap, and it takes 3 weeks to get into the neurologist, so I am still waiting for my upcoming appointment to discuss the results, so I'm not sure on the numbers. They just told me that the MS came back negative, and he wanted to discuss complex migraines, but I can't really seem to find anything called that...

I looked at the list of migraine types, and I seem to have stuff that matches all of them. A couple of my aunts and one of my cousins has bad migraines, but I'm not sure on the type, so perhaps it could be hereditary.

Thanks again!

Hi again too.

You won't find anything on "complex" Migraine because there is no diagnosis of "complex" Migraine. We do see it used, but doctors use it differently, so it really doesn't tell anyone what kind of Migraine you may have.
You can read more about this in Ocular, Optical, and Opthalmic Migraines

As far as the spinal tap goes, your neurologist, or whomever did the tap would have had the reading right away, and should have it your chart. For instance, when I had one of my spinal taps I think my reading was around 284. My doctor told me while he was draining the cerebriospinal fluid down to around 17. Normal is under 200.

I'm rooting for you - I just want you to have the best care you can have, and sometimes that means seeing lots of doctors before we get the right fit! And it may be time for a second opinion....

Thanks for the reply. When he drew the fluid, he didn't say anything about the amount that I remember at least. He did ask if I wanted to see it, which I didn't, lol. I guess maybe they will tell me what type when I go back? They just said he wanted to talk to me about complex migraines.

I am thinking of looking for a new doc. For one, I can't understand half of what my current doc says because his accent is so heavy, and it seems like it would be better to know what is being said to me! And secondly, I'm very irritated that I was left to suffer for what will be 3 months by the time I get back to the doc. 2 1/2 months seems like such a long time to get a test result back.

Are there neurologists that specialize just in migraines?

Add a droolie hi to the pile!

You won't find many general neurologists that specialize in just migraine. Neurology is a big field which encompasses many different medical problems. You might find a general neurologist with a special interest in migraine, but from my experiences in reading what local docs are most interested in, most seem to choose epilepsy or MS. If you want a true headache specialist, you're going to want to find someone that limits their practice to headache patients. We've got a patient recommended list of specialists HERE.

While a lot of people tend to have moderate to intense pain with migraine, there are plenty of us that experience milder pain, too. Generally, intensity of pain really isn't a criterion for distinguishing migraine from another headache. One other little tidbit you might not have come across is that it's possible to have migraines without any head pain at all. They're called Acephalgic or Silent Migraines. Confusing? One way to look at it is this: headache is one potential symptom of migraine, just like a scratchy throat is a potential symptom of a cold. Just like not all colds come with a scratchy throat, not all migraines have to have a headache. I've had plenty of acephalgic migraines. They're rather odd, and it can take a while before you realize that that's what's happening, even if you know about them. But they're no less migraine.

Ditto what droolie said. This article Migraine and Headache Specialists - What's So Special? has good information about why it is important to see a Migraine specialist.

Never hesitate to get a second opinion.

Sometimes I use this anaology - when a pipe in your kitchen sink breaks, you call an expert to fix it. That would be a plumber. You could call a handyman who could fix the broken pipe, fix the faucet, paint the cabinets an all around "fix-it" man.

Neurologists may fine doctors, but really aren't experts in any one area because they treat so many patients with different conditions: MS, Parkinsons, stroke and epilepsy to name a few. A Migraine specialist devotes his practice to one area - ours - Migraines and headache disorders. So when your head hurts, go the the expert, a Migraine specialist. What part of the country are you in? There are not a lot of Migraine specialists out there, and some of our members travel well over eight hours to see theirs. They all say it is worth the time and effort.