I'm just tired

By Annette Monday, August 13, 2007

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I need to know more about "complicated/complex migraines". It's not just a "I want to know more about "what you say I have"...it's a feeling of "I have to know why? and what?"

I have had migraines since I was 20 years old. That was my first "headache". Migraines run in our family. For many years I watched my mother go in and out of the hospital with migraines. Always it was a possible stroke, or MS, or this or that, but in the end it was migraines. And there are other close relatives who get migraines on my mother's side. For 20 years they were always just headaches and I could control them with simple over the counter meds or a heating pad and a dark room. They weren't often and I thought I was lucky.

Then we went on vacation to the Wisconsin Dells. Not far from home, just over the border, just for a few days with our teen daughter and her friend. We had a great few days and we left to go a few miles north to a dude ranch to spend a few days riding horses, living in a cabin, sitting out by a fire. I had a headache but not a migraine. I didn't feel bad but not great. I sat in the backseat, not something I normally did, so our daughter could get some driving time in to get her license. By the time we drove 20 minutes north and we got out of the SUV, I couldn't walk upright. My legs wouldn't straighten up at the knees, no pain, they just didn't want to let me walk. They were weak. Still I didn't feel that bad, just weak and tired. Being stubborn and not wanting to ruin the trip, I refused to go to a doctor or hospital, and I was in the Wisc. back country. I could wait three days to get home. This was on a Tuesday afternoon. The people at the ranch said I looked like someone who had MS or a palsy the way I walked. I needed assistance up and down stairs or getting on and off a horse. Otherwise I was fine. By Friday afternoon I could walk normal, upright, like nothing was wrong with me. They told me to get checked for tick bites, for Lyme disease. When we got home the next week I checked with my wonderful doctor. All kinds of tests showed nothing. I was fine. He didn't know what happened and I didn't mention a migraine because as far as I knew I didn't have one.

A month later it happened again, and this time I was home and able to go right to the doctor. I was having a migraine and didn't know it. Right to the neurologist....right to the MRI and CT Scan and EEG's and xrays and blood tests and colonoscopy and spinal tap and more doctors and more needles and what is going on here! Finally - after 2 1/2 years I find a doctor who says the spot on my MRI is a migraine (they all said that) and does a mapping EEG and shows where my brain is not working right and slowing down. And then in the same clinic a rhumatologist who says I have Fibromyalgia. That took me a couple of years to even acknowledge, a garbage disease is what I call it, and I wouldn't even say I had it for fear people would actually laugh at me. I still have trouble telling some people I have it. And maybe sometimes I still don't believe that I do...yes the pain is there and yes the pain is real - oh trust me the pain is real - but I am one of those I have to see it to believe it type people and I don't see it on the blood tests and I don't see it on the xrays or MRI's so I don't believe it yet. I'm trying though.

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Teri Robert, Health Guide

8/13/07 12:18pm

Annette,

I hear you about being so tired of all of this!

As we discussed before, "complicate" and "complex" are descriptive words used to describe your Migraines, not a specific type of Migraine, not a diagnostic term.

I'm not a physician, and nobody can diagnose you via the Internet, but I can tell you that the only form of Migraine that causes true motor weakness is hemiplegic Migraine. You can read more about it in Hemiplegic Migraine - the Basics.

Carrie

10/11/07 12:40am

.. I was finally diagnosed yesterday with Basilar Migraines. For over a year I have been treated as having panick attacks, stress, vitamin deficiencies, and tested for everything and everything comes back basically normal. But I was and am not normal. Like you, out of nowhere comes the weakness, slurr of words, consentration problem...than bam it's gone. Maybe in 20 minutes maybe in a few hours or maybe in a day or two. Was it Lymes...was it MS...was it Fibomyalga....was it stress. I never heard of these Migraines. I have actually never had headaches hardly! AS A MATTER OF FACT I HAVE JUST STARTED TO FEEL THE HEADACHES a few weeks ago and it is getting progessively worse for me. The good neews is I have a great Neurologist and he is upping my preventative migraine meds and has given me acute migraine meds. Now that we know I am having migraines. I just wanted to reply to let you know that you ar enot alone!!! :O) Take care of yourself!.....Carrie

Annette

10/12/07 2:17am

It's great to know someone out there knows what I am going through. I am sorry though that you have these. I hate that everyone makes you feel like you are crazy when you know that you are not.

I am learning when I have a migraine, even when I seemed to not know I was having one. The left side of my nose will start running and my arms will feel cold inside my skin. My head will get fuzzy and if I am out driving and alone I have to talk to myself and tell myself things like, I know my name, my address, things like. Weird huh? And I will call someone and talk to them on the phone. I am glad that you are finally diagnosed. I hope they get you on some meds that will help you.

You will need a good support system and I hope that you have that as well. I am always here if you need to vent or talk.

Annette

Carrie

10/13/07 12:24am

Same here Annette! Ask your doc abt. Basilar Migraines. I had to call my mom when I was driving home one time recently because I was confused as to where I was. I am on topomax in the morning and at night. I also have three meds for when I have an accute attack coming on.....diazapam,promethazine and toradol. Pretty strong together...but it knocks out the pain very well and then puts to sleep. I am seeing a great Neuro.! I was starting to get worse so I am out of work for a bit while he slowly ups my topomax as it has to be upped slowly. I wanted to tell you all of this becasue it seems like when you talk you sound like me. I feel as if it is me explaining what I have. And if you are still not fully diagnosed...I would say our conversation is worth mentioning to your doc! This type of migraine is very rare and there is not a lot known about it. I was so happy to hear back from you! It made my day! Take care of yourself...rest and when you feel the tingeling...or slurring coming on......the migraine is on the way!!! I have not had the blinding yet. I have had eye fuzziness and some cloudiness. I am not looking forward to any temporary blindness...that can occur with this. take care! ......Carrie Roll Eyes

Annette

10/14/07 11:23pm

Well tomorrow morning I am having my second brain mapping. They are pretty cool. I had one in March 2006 and I know there is some permanent damage from the migraines. They tried to do some kind of bio feedback but that didn't work. I am going because I want the paperwork because I am trying to get disability. And I am hoping that maybe the meds have helped and maybe the damage is better. I know they say it was permanent but there is always that hope that it got better. The brain is a funny thing and it can do some weird things.

The bad thing about these migraines, and the Fibro that I am finally accepting, is that I was letting it RUN me. My husband and I let it take over our lives for this past year. I let him do everything and I stopped doing things for myself. I counted on him to think for me, to do things for me, to be there for me all the time. I stopped being me. And we stopped being us. And that was the biggest mistake ever. We are best friends and we let this take over our lives and our marriage and we lost ourselves and it was a rough time but we finally talked about it and now things are getting back to the way we were and I am starting to do things for myself again. And we are happy again.

My doc wants to rule out seizures, he thinks I might be having them and not knowing it because I have bruises and run into walls and don't remember where I am getting them. It could be the migraine blackouts instead but he is doing an EEG just to be on the safe side. He always does stuff on the safe side. They did like 100 blood tests. I think they are vampires there.

I will talk to my doc about Basilar when I go back...it's great to meet you.

I hope things go good for you.

Leslie

10/26/08 10:34am

I realize this is long after the fact to be replying to this post, but I just wanted to add two things. There really is a diagnosis called "complicated migraine." It is a migraine with neurological features. It resembles a TIA. I know, I have them, and the first time I had one my husband totally freaked out. He still gets quite upset about it, but he now at least knows that it's really just a precurser to a headache. I take Topamax, and don't have them very often now. In fact, I wasn't hardly having them at all until my doctor cut back on my topamax due to the fact that I complained about being dopey all the time. I think I need to go back to the original dose and just be dopey. But enough of that.

The other thing I wanted to say is that you might want to ask your doctor to run some adrenal functioning tests. I, too, have fibro, and it tends to go hand in hand with adrenal malfunction. I don't mean that adrenal malfunction that you see on TV where someone is just trying to sell you a vitamin - I mean real adrenal malfunction where you need prescription meds. Your endocrine system is like the electrical system in your car. If it goes out of whack, it will screw up everything until you get it fixed.

I hope you receive this and that it helps. More importantly, I hope you are doing better by now. Sincerely, Leslie

Teri Robert, Health Guide

10/26/08 11:54am

Dear Leslie,

Not to belabor the point, but no, there is not a standard diagnosis of "complicated Migraine." ALL Migraines have neurological features, some of which can resemble a TIA or stroke. You also need a more definitive diagnosis. If you're having Basilar-Type or Hemiplegic Migraines, you need to know because it can make an important difference in which abortive medications are prescribed for you.

We do hear from people whose doctors have said they have "complicted Migraine." One of the problems with such diagnoses, which are not part of the International Headache Society's International Classification of Headache Disorders, 2nd Edition, (the gold standard for diagnosis and classification) is that there are no established criteria for such diagnoses, and they can mean one thing when used by one doctor and something else entirely when used by another.

Here are the types of Migraine recognized by the ICHD-II:

1.1 Migraine without aura
1.2 Migraine with aura
    1.2.1 Typical aura with migraine headache
    1.2.2 Typical aura with non-migraine headache
    1.2.3 Typical aura without headache
    1.2.4 Familial hemiplegic migraine (FHM)
    1.2.5 Sporadic hemiplegic migraine
    1.2.6 Basilar-type migraine
1.3 Childhood periodic syndromes that are commonly precursors of migraine
    1.3.1 Cyclical vomiting
    1.3.2 Abdominal migraine
    1.3.3 Benign paroxysmal vertigo of childhood
1.4 Retinal migraine
1.5 Complications of migraine
    1.5.1 Chronic migraine
    1.5.2 Status migrainosus
    1.5.3 Persistent aura without infarction
    1.5.4 Migrainous infarction
    1.5.5 Migraine-triggered seizure
1.6 Probable migraine
    1.6.1 Probable migraine without aura
    1.6.2 Probable migraine with aura
    1.6.5 Probable chronic migraine

Regarding Topamax -- I'm sorry it made you "dopey." Have you considered trying a different preventive? There are over 100 medications now in use for Migraine prevention, so you have many, many options. For more information, take a look at Migraine preventive medications - too many options to give up!

I hope you understand that we try our best to provide accurate information to help everyone get the most accurate diagnosis and effective treatment available.

Whether you increase your Topamax or try something different, I hope things improve for you soon!

Teri

Leslie

10/26/08 3:14pm

Perhaps "complicate migraine" is simply a layperson's term that the doctor's like to use for a migraine with neurological features. That is how it is described everywhere I find it in the authoritative sources I've looked at, and mine are like TIA's. But it doesn't matter what you call it, does it?

Topamax has been a miracle drug for me. You see, I have a lot going on besides the migraines. I had the adrenal problem going on and undiagnosed for so many years (not my fault - blame male doctors who like to say "it's all in your head") that it caused me to have permanent right sided brain damage. Topamax has caused me to think straighter, although being dopey, and has helped with the mood swings caused by the other problems. A small side effect is fine compared to what I was living with!

Teri Robert, Health Guide

10/26/08 3:24pm

Leslie,

If the Topamax works with out causing you any of the dangerous side effects such as permanent vision loss, you're right that a bit of cognitive side efffects may be negligible. Really, I just wanted to be sure you knew how many options you have, and, of course, I have no idea what your doctor may have mentioned. The cognitive side effects of Topamax were much worse for me. I couldn't drive because my concentration was so messed up, and working was a disaster. I can take Zonegran, another med in that class, with no problem. Just goes to show how different we all are.

Without knowing what kind of "authoritative sources" you've been using, I can't really know what you've been reading. Yes, there are plenty of places online that still use the term "complicated Migraine," just as there are sites using "ocular," "optical," other Migraine terms that aren't standard diagnoses. But, yes, I think it can matter what you call it. ALL Migraines have neurological features. Migraine is a genetic neurological disease. But, if you have Basilar-Type or Hemiplegic Migraine, it's recommended that you not be given triptans (Imitrex, Maxalt, etc.). That's one reason I think it matters very much that everyone have a truly definitive diagnosis.

I'm really not trying to be argumentative here, but when other people read these comments, I want them to have the best information possible. In case you wonder, I get my information by going to medical conferences, reading books and journals in this field, and working with some of the top Migraine experts in the world. So, you see, I'm not pushing any personal agenda here. What I'm saying is based in the science.

Teri

Marlene

11/19/07 2:55pm

I just finished reading your explanation of whats been going on with you. I am so sorry and I like probably many others are tired physically and emotionally from all of this. But at the same time I try and keep a positive attitude, try to laugh at how I have turned out, never dreamed when I was young that I would be like this at 58. When I loose what I was going to say or can't walk I just start laughing at myself. Can't walk, talk, work or play only very little now days but thats better than not at all. My most recent diagnosis (11-01-07) with a specialist is complicated migraines with aura and had a light stroke.

Hang in there take one day at a time

Leslie

10/26/08 4:01pm

I'm 48 and I never dreamed this would happen to me either. I had my whole life planned. I had struggled to get through law school, had an established and flourishing law practice, and now I'm living on a disability check. Go figure. It just goes to show that a person can not think that they've got their life planned because they don't.

I was re-reading your earlier post. I think you're right that there isn't a term "complicated migraine" BUT I think that is only that the term isn't used anymore. I think it used to be considered correct by the doctors and you know how long it takes for people to quit using something when they're used to using it. I wanted to clarify this because of what I said earlier. I don't want people thinking that their doctor is crap because he told them they have a complicated migraine. It is probably just that he is like everyone else, slow to change his ways and use the newest term.

I'm saying this because after I wrote my prior post I started answering my email, but I was bugged by what I had written. My doctor is the most respected neuro in this area, and I just don't think he'd say something that was wrong, especially to me since I'm educated. So I did a quick web search and came up with numerous places discussing complicated migraine. Many were medical journals, some in this country, some in Europe. But what made me smile was the one that said "this term is no longer used."

I remember when I practiced law how often I had to keep up with medical stuff, especially the mental from the DSM. When they went from the DSM-III to the DSM-IV it put me in a tailspin.

Anyway, I'm writing to say you're right, there is no such thing as a complicated migraine. However, when people ask about it they need to know that what their doctor is really referring to is a migraine that looks like a mini seizure and/or makes their eyes twitch all over the place.

I hope the young lady who started this discussion reads this. Primarily I hope she gets her adrenals checked. After all this happened to me I hope that anyone who has fibro gets their adrenals checked. I'm finding out more and more women have adrenal problems than people think, and that it can develop into something serious if they undergo any severe stress. Me, I can't be outside if the temps are over 83 degrees. And I live in Mobile Alabama! HA!

It sounds to me like you're doing a good job keeping it together. Keep up the good work. Leslie

I'm just tired

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