Diagnosising type of migraine

Sorry, but I am posting one more thing that just adds to the confusion. My question is how many doctors actually would be able to tell you "what kind" (and be accurate) of migraine you have and thus, maybe be better able to treat it? Instead they are throwing at us hundreds of pills that have no value whatsoever because they are being used for the wrong kind of migraine. And let me top it off with this. Each one of these types of migraines mentioned in the article below are called migraines. Why? How do we know they aren't something else? Maybe we end up with a migraine as a symptom but the root of the problem is some other ailment that should and isn't being treated.

If we went in to a doctor and said our leg hurt, would they lump that into one diagnosis and start giving us pills to experiment with? Heck no. They would do all kinds of tests to find out what was making our leg hurt.

I know that some of you on this forum have been diagnosed with a particular migraine. I'm curious as to how they diagnosed it. Were there tests done or did they just go by what you tell them?

Read this:

http://www.healthcentral.com/migraine/types-of-headaches-282018-5.html

A neurologist diagnosed me with classic migraine or migraine without aura. I've had migraines since I was 4, but I never wanted to misrepresent what I was experiencing. So until a neurologist said that I have migraines I told people I had really bad headaches.

Chris

Good point Linda.
I was told I have menstrually related migraines and muscle contraction headaches.
This was based on what I imparted in disussion, and bcak then because I really only got them associated with cycle.
Never had any deeper diagnosis than that. All migraine....thats all I have been told.

P

Let's see ... two GP's who have managed my case in Alaska and then in California. One neurologist and one psychiatrist in Alaska. In California, one transgendered neurologist, one pain manager / neurologist, two headache specialist neurologists at University of California Medical School in San Francisco, one additional neurologist, and back to my pain manager / neurologist.

4 MRI's
1 EEG
2 Cat Scans
1 Arteriol Sonogram
Massive blood tests
3 spinal taps
+ other tests that cost a lot and I do not remember

Yes, I believe I have been given adequate tests and diagnosis. According to my friend, Teri Roberts, I have SHM. According to the migraine specialist at UCSF I have "just migraine" but triptans are contraindicated. He said the same preventatives that they give to regular migrainers will help me or not - I have to take them to try and see. I have.

Migraines a re a neurological disease. It can be inherited but does not have to be. The neurons in the brain misfire. Neuron A wants to talk with neuron B but the message gets to neuron C instead. Why does this occur? No one knows ... YET. But we know a lot more then we knew when I started in 1997 with stroke-like symptoms.

I do not worry so much about diagnosis once other causes of my symptoms were ruled out. I am much more interested in effective treatment. But we all know that each person is very individualized in their reaction to the preventative medications. What helps you, won't help me and vice versa. the only way to determine if a medication is useful is to take it for at least 8 weeks (two full months) then see if one is better or the same.

I agree with you Richard. Once other problems are ruled out, what matters is finding effective treatments. Knowing what title to put on my migraine is interesting, but it seems to be of little help in predicting what will or won't work to bring relief.

Chris

I would love to have other problems ruled out.

Pen,

I don't know how NHS feels about mutiple diagnostic tests, but here in the US it takes trainloads of money to get them done. And then there is a matter of convincing a doctor that you need the test(s) so that s/he will order it. Not always an easy process. I hope that you can get some tests, perhaps like Richard's list?

Chris

Well Ive had a cat scan and an ECG.
Also had a lot of blood work done.
Had neck xrayed too.
Everyone agrees there is a problem with it, but no one seems to be able to pinpoint.
Seems ts in the muscles.
That is probably the one I need to discern.
Also cause and effect with the FMS

We get tests if we push and yes if they feel its necessary.
I tried for 10years to get my hormones checked and they neerf would.
Also thyroid tests are unreliable.

I guess that means that even a negative might not be correct.

Oh boy..

I suppose it doesn't matter what kind you have anyway since it is hit or miss whether something is going to work for you even if you have a correct diagnosis. I have had tests done but just to rule out anything serious (?-like migraines aren't?) and have been told I just have migraine--no particular kind.

I agree Linda. What I would like is a diagnosis of my other pain.
They call it myofascial/trigger point.
So I should deal with this, it impacts/causes on my migraine.
I really dont know.
I just wish these guys would get their acts together and agree.
They go beyond difference of opinion, they sometimes make each other look like idiots IMHO.

If I have this other pain. If I could get it treated, I just might have some life quality, which I dont any more.
That is why I owuld like a proper diagnosis, but the only reason for what kind of migraine for me is...
Is it still hormones, and if so is there anything I can do about that.
As I have no apparent cause or triggers, at least it would stop me speculating.

Chris,

I hate to tell you, but your neuro had terminology confused. Classic Migraine is Migraine WITH Aura. Migraine without aura used to be called "common Migraine."

Teri

crt wrote:A neurologist diagnosed me with classic migraine or migraine without aura. I've had migraines since I was 4, but I never wanted to misrepresent what I was experiencing. So until a neurologist said that I have migraines I told people I had really bad headaches.

Chris

Pen,

When w'er told we have "menstrually related Migraines," that's not actually a type of Migraine; it's describing your main trigger -- the hormonal fluctuations of the menstrual cycle. They should still be diagnosed -- Migraine without aura, Migraine with aura, etc.

Teri

pen wrote:Good point Linda.
I was told I have menstrually related migraines and muscle contraction headaches.
This was based on what I imparted in disussion, and bcak then because I really only got them associated with cycle.
Never had any deeper diagnosis than that. All migraine....thats all I have been told.

P

Hi!

Good topic for discussion, a discussion I have with people pretty frequently.

First, let me say that Migraineurs who come to sites such as this one or MMC tend NOT to be the "average" Migraineur. We tend to be the tough cases. The majority of Migraineurs don't have Migraines frequently, and when they do, triptans or other meds usually take care of things and get them back on their feet.

As far as doctors being able to diagnose, I propose that it's more a matter of them not taking the time to diagnose. If you look at the articles about the different types of Migraines and headaches on http://www.healthcentral.com/migraine/types-of-headaches.html, you'll find that each article lists the IHS diagnostic criteria for the various types. Any doctor can get a copy of the IHS criteria and use it to diagnose. Of course, another part of the problem is that doctors aren't taught much or well in medical school. My son graduated from medical school and finished a three-year residence with only one 1.5 hour lecture on Migraine. PLUS, in that lecture, they were told that Migraines are vascular headaches, information that's at least 20 years out-of-date.

I know I can be pretty testy about things, but I believe we need to know as much as possible, and any doctor who can't or won't take the time to arrive at a definitive diagnosis wouldn't be my doctor for very long. In that article, you saw why I think we need to have that kind of diagnosis, so I'll step down from my soapbox now.

Teri

estre004 wrote:Sorry, but I am posting one more thing that just adds to the confusion. My question is how many doctors actually would be able to tell you "what kind" (and be accurate) of migraine you have and thus, maybe be better able to treat it? Instead they are throwing at us hundreds of pills that have no value whatsoever because they are being used for the wrong kind of migraine. And let me top it off with this. Each one of these types of migraines mentioned in the article below are called migraines. Why? How do we know they aren't something else? Maybe we end up with a migraine as a symptom but the root of the problem is some other ailment that should and isn't being treated.

If we went in to a doctor and said our leg hurt, would they lump that into one diagnosis and start giving us pills to experiment with? Heck no. They would do all kinds of tests to find out what was making our leg hurt.

I know that some of you on this forum have been diagnosed with a particular migraine. I'm curious as to how they diagnosed it. Were there tests done or did they just go by what you tell them?

Read this:

http://www.healthcentral.com/migraine/types-of-headaches-282018-5.html

Well of course yes. I should have pointed out that I dont have aura.
Common migraine it is.....
Either way, not a jot of help from anyone in going on for 20 years.

TeriRobert wrote:Chris,

I hate to tell you, but your neuro had terminology confused. Classic Migraine is Migraine WITH Aura. Migraine without aura used to be called "common Migraine."

Teri

Thanks for the clarification Teri. But really, I just went to a neurologist to get the official migraine title. The meds he prescribed for me were of no help anyway. I didn't go back. The only prescription meds that have been effective for me are the triptans and it was my surgeon, of all people, who suggested them.

Now that I hear he couldn't even get the type of migraine correctly, I feel vindicated in my decision not to return to see him.

Chris

To Chris - I also got the meds that finally worked not from my neurologist but from a general practitioner.

From my experience, yours, and others on this list, I question how much good neurologists are really doing for us. It seems like folks get better help from pain specialists and GPs. What do y'all think?

Chris

I dont have a pain specialist!?? And my GP is a bit clueless, but supportive. Cant say I have gotten anything out of the neuros except scare stories of MOH.
When asked my GP to go to a neuro cos it seemed the thing to do as everyone else seemed to.
She said if she were me she wouldst because the they will just go over everything all over again, and probably not help.
Well she wasnt wrong.

First, it is lovely to see you, Teri Roberts, posting here. I always appreciate it when you share your vast knowledge.

Second, Pen - your avatar is delightful and fascinating, if a bit terrifying.

Third, my neurologist IS my pain manager. He is Board certified in both specialties. I am VERY fortunate. He is well worth the six hours of driving ( a friend drives me the 3 hour to San Francisco and back) PLUS we always have a magnificent lunch and see The Castro and Chinatown or Golden Gate Park or something else fun. Yes, I am VERY fortunate + I have THREE lifetime health insurance policies. I DO count my blessings!

Teri, I thought IHS does accepts Menstrual Migraine - not hormonal but menstrual Migraine as a migraine type.
It's a migraine variant that occurs only if a woman has migraine when she has her period but never at other times?

Risa

Chris,

A lot of the problem is that neurologists aren't necessarily Migraine specialists. They're kind of the GPs of all things neurological -- diseases, disorders, injuries, etc. Just like other GPs, they usually don't have the training, experience, or specialized knowledge to be specialists in any particular neurological area. True Migraine and headache specialists, on the other hand, generally limit their practices to Migraine and and other headache disorders, either strictly limiting their practice to "headache medicine" or perhaps "headache" and pain management combined. Most often, just Migraine and headache. Most of the people here probably know more about Migraine than a general neurologist.

The AHS and AMA are trying to make this better. A few years ago, a new neurology subspecialty in Migraine and headache was established. It doesn't add anything to the basic medical school curriculum, but anyone specializing in neurology during residency can do a rotation in "headache medicine," generally at one of the larger clinics affiliated with a medical school. Additionally, once a year, there is now a certification exam given for doctors wanting to be "certified headache specialists."

The problem I generally have with pain specialists is that pain is what they're trained in. They often have little to offer in the way of aborting or preventing Migraines.

Hmmmmmm. Did all that make sense?

Teri

crt wrote:From my experience, yours, and others on this list, I question how much good neurologists are really doing for us. It seems like folks get better help from pain specialists and GPs. What do y'all think?

Chris

Hi, Richard!

Thank you. The reason I'm not around more often is simply time. MyMigraineConnection and my HelpForHeadaches sites keep me pretty busy.

It's good to "see" you.

Teri

Richard wrote:First, it is lovely to see you, Teri Roberts, posting here. I always appreciate it when you share your vast knowledge.

Second, Pen - your avatar is delightful and fascinating, if a bit terrifying.

Third, my neurologist IS my pain manager. He is Board certified in both specialties. I am VERY fortunate. He is well worth the six hours of driving ( a friend drives me the 3 hour to San Francisco and back) PLUS we always have a magnificent lunch and see The Castro and Chinatown or Golden Gate Park or something else fun. Yes, I am VERY fortunate + I have THREE lifetime health insurance policies. I DO count my blessings!

Risa,

I guess the answer here is "Yes and no." It's been a debate for a while now. Here are the forms of Migraine officially recognized in 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 seizures
1.6 Probable migraine
1.6.1 Probable migraine without aura
1.6.2 Probable migraine with aura
1.6.5 Probable chronic migraine


In the appendix, there is some discussion of "Pure menstrual migraine without aura" and "Menstrually-related migraine without aura" as subforms of Migraine without aura, but they're both still Migraine without aura.

Does that help?

Teri

CluelessKitty wrote:Teri, I thought IHS does accepts Menstrual Migraine - not hormonal but menstrual Migraine as a migraine type.
It's a migraine variant that occurs only if a woman has migraine when she has her period but never at other times?

Risa

In the appendix, there is some discussion of "Pure menstrual migraine without aura" and "Menstrually-related migraine without aura" as subforms of Migraine without aura, but they're both still Migraine without aura.

I guess so - so, it's still just Migraine with or without aura, depending which one the patient has.
It just happens to show only around periods, right?

Risa

Risa,

Yes, it's till just Migraine with our without aura. That's why it's only in the appendix for discussion and not part of the formal classifications. After we started this part of the discussion, I checked with one of the docs on the committee for the IHS ICHD-II. I was able to become a member of the IHS last year, and it has definitely opened more info to me.

Teri

CluelessKitty wrote:

In the appendix, there is some discussion of "Pure menstrual migraine without aura" and "Menstrually-related migraine without aura" as subforms of Migraine without aura, but they're both still Migraine without aura.

I guess so - so, it's still just Migraine with or without aura, depending which one the patient has.
It just happens to show only around periods, right?

Risa