Monday, September 21, 2009 Milmoll asks

Q: WHY NO RESEARCH INTO THIS?

TO ALL DOCTORS, SCIENTISTS and RESEARCHERS,

OPEN YOUR EYES and PIN BACK YOUR EARS

All this time, there has been no Medical or Scientific Research into Octual and or Abnormal Migraines and the other migraines which are not text book material.. Why did you not know about our existence? If Doctors are individually categorising patient's migraines to fit into aura or non aura effects and addressing same individual symptoms with anything that resembles it. Is it not the time for all Doctors to be updated and informed about this hidden melanoma that is affecting and or helping to destroy lives.

If the universal message of the majority of Doctors is to 'DO NO HARM'. Why then are they still being allowed to do it with each generation of Doctors, through sheer ignorance and devotion to the 'hard copy' of what they are taught, know and have heard about.

This; does not help those, like myself, who have had to search the web and huddle amongst those who suffer same and or similar afflictions, to understand our clues and survive the problem on a daily basis.

What are all you Doctors, Medical Students and or Scientists going to do about this, miscarriage of diagnostic justice...gives us an aspirin and send us on our way.

WE ARE MOTHERS, FATHERS, SISTERS, BROTHERS, AUTIES, UNCLES, NANNA'S AND GRANDADS and the rest. As for our children, if we who suffer know our symptoms and our children begin to show the same signs, how are we to get the right people to listen and help. Even babies go through these types of migraines too and they cannot speak but parents who suffer all forms of migraine automatically know and if left to develop into one of these migraines 'NOT SPOKEN ABOUT', then what can we do; allow to for a prolonged misdiagnosis?

WE, WHO ARE THE FORGOTTEN SUFFERERS WANT AND NEED TO KNOW.

We cannot work without being crippled, disabled or unable to function within society and normal life without immediate risk of failing, embarrassment, full of excuses, seen as stupid, ignored, overlooked, time wasters and again the list is endless.

All that knowledge to find, create and correct. Are you all spending time doing nothing because you do not want to admit you are all incapable and or not bothered to seek financial help to look into these and similar forms of Migraine because you are stumped and this does not give any of you a Nobel prize or fame. What is it that has allowed you all to stop listening and hearing our plea...when did you all turn into autromatrons - SEE NO DIFFERENCE - HEAR NO DIFFERENCE - SPEAK NO DIFFERENCE?

So I end this by asking the question again..WHY NO RESEARCH INTO THIS?

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Answers (2)

Nancy Harris Bonk, Health Guide

9/21/09 9:21am

Hi Milmoll,

Teri and I just came back from the 14th annual International Headache Scientific Congress in Philadelphia where all they presented was research on Migraine disease and headache disorders from researchers all over the world. These papers included gastric issues and Migraine to cortical spreading depression and what role it plays in a Migraine attack plus much, much more. So, to say there is no research is simply incorrect.

Teri and I will be writing up this information soon for our readers, please stay tuned.

Good luck

Nancy

Chris Z

9/21/09 1:52pm

Nancy,

This will be a very interesting subject on many levels. I can't wait to see what is posted. I know that some people experience a lot of nausea/vomiting with their migraines. On the most part I never have.

There certainly are a lot of food triggers out there.

As the rate of obesity increases, so does the rate of bariatric surgeries. A significant number of these patients have begun to experience migraines as well as brain fog and other neurological issues. My migraines began long before my surgery. My personal theory, I do believe there may be a link to the increased use of artificial sweeteners.

Teri Robert, Health Guide

9/21/09 3:17pm

Chris,

I find the increase in Migraine after bariatric surgery interesting as well.

Something to remember, however, is that Migraine is a genetic neurological diseae. It cannot be caused by surgery or by artificial sweeteners. Certainly, bot the trauma to the body of this or any other surgery can make Migraineurs at least temporarily more susceptible to their Migraine triggers, but it's simply not possible for bariatric surgery to cause the disease. This makes me wonder if all of these people really have Migraines or if they're either sefl-diagnosed or misdiagnosed.

Also, while it's true that artificial sweeteners are a trigger for some, those Migraineurs are far from being the majority of us. Another question I would have her is how many of these patients were using those artificial sweeteners before surgery. I'd imagine the percentage would be pretty high.

Just some thoughts.

Teri

linda

9/25/09 4:12pm

I believe that 2 of the reasons why there is a lack of awareness in some doctors is...

1. The majority of migraineurs are women...and some "old school" docs still reguard women's complaints as minor, at best.

2. Another reason could be that migraines are an invisible condition, in that it isn't as apparant as say MS or a heart attack.

Teri Robert, Health Guide

9/21/09 12:02pm

Milmoll,

Having had Migraines for nearly 50 years, I feel your frustration. That's partly why I do the work I do. So, let's talk about this.

What are Octual Migraines? I can't really say anything on that one because I'm not sure what you're meaning on that one.

As for "abnormal Migraines and the others which are not text book material," I want to tell you that researchers are constantly working on these. As Nancy mentioned, we just returned from the IHC in Philadelphia. It was the 14th IHC, but that means it's been going on for 28 years. The international group assembles every two years because it's more difficult for them to get together. At that time, the 51st annual scientific meeting of the American Headache Society was held.

The International Headache Society's International Classification of Headache Disorders (ICHD) exists because there MUST be standardized classification so that doctors around the world are using the same names and classifications when treating Migraine disease and other headache disorders or there would be such vast and unending confusion that treatment would suffer, and research would never make any sense.

At this point, these are the "official" Migraine classifications:

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

This is just the bare bones of the classifications. For each of the classifications, there is a great amount of additional information in the document. Lists of possible symptoms, diagnostic criteria, and far more.

The ICHD is constantly under review and being updated. There is a working group charged with reviewing and revising the ICHD to keep up with the research and ensure that the classifications fit the diseases and disorders and that the patients and their disorders are NOT forced into categories that don't really fit them.

Milmolll, may share something else with you? A big part of my job here is to follow the research being done and go to conferences such as I mentioned above, and THEN to write about what's going on in the field and what it means to us as Migraineurs and sufferers of other headache disorders. As Nancy told you, we'll be writing about what we learned at this conference for weeks to come. We're also attending a second conference in November and will do the same there.

I hope you'll take some time to look around the site and read some of the articles we've written about types of Migraines and headaches, research, treatments, and more.

There's something I wonder from your post. What kind of doctor do you see for your Migraines? Family doctors and even neurologists treat so many illnesses and diseases that it's impossible for them to keep up with the research on all of them.

If your doctor isn't able to help you, it may well be time to consult a Migraine and headache specialist. It's VERY important to note that neurologists, pain management doctors, ENT's, and others aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

As ill as Migraines can make us, and as difficult as they make just living, I too often feel that we're getting nowhere fast in research. BUT, when I sit down and look at the progress that's been made even in the last ten years, I am amazed at how progress has been made ...

Migraine is now recognized as a genetic neurological disease instead of still being thought to be "just" vascular headaches.
We now have choices in medications that can work to actually stop the Migrainous process in the brain and the associated symptoms instead of just masking the pain for a few hours.
Doctors coming out of medical school can now choose to do a residency in headache and Migraine treatment.
There is now a certification exam for doctors to pass in order to be certified as Migraine and Headache specialists.

Research funding IS a problem, and the economy isn't helping. The US has long left the development of treatment to the pharmaceutical companies, mostly so our government and tax payers don't have to pay for it. BUT, the big problem with this is that the pharma companies can't do the basic research into what causes diseases and how the work in our bodies, and this basic research MUST be done before more effective treatments can be developed.

Here are a few fast statistics for you. There are more than 36 million people in the US with Migraine disease alone. That doesn't include any of the other headache disorders. That's 12% of the US population. BUT, do you know what percentage of the budget of the National Institutes of Health (NIH) goes to Migraine and headache research?

Less than one-tenth of one percent!

The Alliance for Headache Disorders advocacy is working to get more research funding for us. I encourage you to go to the AHDA web site HERE. Please take a look at the site and sign up for the email list. This is something each of us can do to help get more research.

Oh, my! I really didn't mean to write so much here. Guess you can tell that this is a big issue for me too. I hope you'll going to stick around and be an active member here, Milmoll. I love your passion!

Milmoll

9/24/09 4:23am

Dear Teri,

I needed to vent years of frustration and pain to get a response; some form of responsibility from the medical, scientific and research field because in England a lot of migrainers like myself, who have unusual migraines are simply ignored; increasing a lot of ignorance around us, which in turn creates a form of self isolation and as we stay within our frightening pod of embarrassment and fear, it is felt that we are expected to stay mute; while praising other successes of treatment for the normal migrainers, hoping we are next.

I am desperately trying to educate my Doctor, who just this week carried out further blood tests in a vain attempt of trying to associate my migraine problem to an old and on going problem of 'heavy bleeding'. Do you know how irritated this is! I feel patronised at every step and feel there is no way out. I have finally decided to make a stand by reaching out to someone in the medical field and I am already regretting my stupidity.

I thank you for giving me and others like me, a heads up on what has been happening in America but what about the NHS in England, what about Local and Community Surgeries, why have no White Paper been sent out to guide and inform them about changes and what to do if a patient shows signs of difference. In this time of upheaval towards a business type NHS in order to help it back on its feet. Why then within such expanse and expense of newity of new build is there not a specific space for unusual migraine disorders and its symptoms.

Example Manchester Royal Infirmary has brought together so many hospitals and units and created a Central line of care and yet my Doctor is still stumbling in the dark because I feel he is unaware of protocol and is using an outdated method of 'ticking boxes' before he passes me onto the appropriate departments or to avoid is lack of knowledge and test pills on me; forgetting I suffer from circulation problems and is prone to clotting because of past DVT problems. Unusual migraines like mine, shifts patterns as we age. My onset of migraine can now be felt draining my entire body, settling at my feet before I am knocked out, do you know how much strength I need to muster when this episode begins and I am not at home.

This makes me sad and teary because as I am not at this time associated with a category, although this website has taught me I am not alone.

I needed a reaction from all those I challenged. I hope this starts a positive discussion while helping others like myself to speak out and no longer feel fearful, embarrassed, isolated or simply dread facing the day. This is one of my passions to fight to for all of us to be heard and addressed accordingly.

ALL UNUSUAL MIGRAINERS OUT THERE PLEASE DO NOT FEEL ALONE ANYMORE.

It seems they are trying but for some of us because of our postal area, we may not or never get the appropriate help but I hope by writing to you all, it will help to formulate 'our' way of talking and in doing so be heard respectively and without bias.

Once again, thank you Teri for trying but I still feel alone in my quest for change towards helping educating Doctors like my own...will anyone out there stand beside me; in this venture to change the way 'unusual migrainers' are treated?

Think of us, not as another test subject but as beings who reluctantly recoil into the shadows, to wake half frozen with fear, waiting for a hand to pull us back into the light.

Milmoll

Teri Robert, Health Guide

9/24/09 11:35am

Milmoll,

Vent away! I completely understand. Having had Migraines since 1960, when I was six-years-old, I've heard some pretty discouraging things over the years too. They can make us feel like giving up, but we just can't do that.

I know our health care systems are very different, but I do want you to know that what I told you isn't limited to the United States. The listing of Migraine diagnoses I have you is from the International Headache Society, and one of the main people working on it is Dr. Timothy Steiner in London.

Even though health care sytems are different, doctors from ANY country can attend important conferences at which they can learn about Migraine and headache treatment as well as the most current research. The Migraine Trust holds a large conference in London every two years. The Internatonal Headache Society also has their conference every two years, and it's held in different places around the world. There's also the European Headache Federation.

In my last reply, I gave you a link to patient recommended Migraine specialists. Off the top of my head, I can think of two specialists in London who are listed there -- Dr. Steiner and Dr. MacGregor. Theyr'e both excellent doctors, and they're both researchers.

I certainly don't have all the answers, Milmoll, and I'm not trying to minimize what you're saying in any way. Just wanted to be sure that you're aware of some of the resources that are available.

One mor thought about educating your doctor. If you'll take a look at our Book and Product Reviews page, you'll find reviews of two "Managing Migraine" books -- one for patients and one for doctors. These books were written and published, in part, for people who don't have access to Migraine specialists, but do have doctors who are willing to learn and work with them. I wonder if these would be helpful to you.

I hope some of the people you want to hear from will respond to you. In any case, please know that you've made a new friend here.

Teri

Heather

9/27/09 8:09am

I have seen numerous Neurologists, Endocrinologists, Rheumatologists, and basically every other specialist there is available in order to gain insight into various issues, including my "Unusual Headaches." I currently have been told my Dx are: Chronic Daily Migraines and Cluster Headaches. Since Cluster Headaches are known as a male phenomenon, it took quite a while to get this one - I honestly had to bring up the diagnosis with my Doctor, who realized it was an appropriate secondary Dx. I have not been able to find any information on "Chronic Daily Migraine", and I now see why... it is not an actual diagnosis!!

I have dealt with one type of severe headache or another nearly every day of my life since I was 12-13. I have had several MRIs with and without contrast of my brain.. which have shown no irregularities. It is extremely frustrating that we go through such terrible, debilitating pain.. without the ability to have a film or blood test to back it. To this date, I have attempted every angle of medications and treatment.. and absolutely nothing helps. The closest thing I can do to even find the tiniest bit of assistance is to use an ice pack directly on my head, lay in a dark & quiet room, and never - ever cry.. that instigates a terrible onslaught of pain. This has felt like a form of torture. I have lost my dignity and my self esteem over the years due to several diseases/disorders.. yet all are being treated with exception of my Migraines/Clusters.

It has been suggested to me that I must try deep brain stimulation as my next resort. I must ask if anyone has reached this level of treatment, and if it has assisted in any way? It is a difficult issue, for I have an allergy to anesthesia, (Malignant Hyperthermia), and no immune system due to RA, Hashimoto's, Lupus, etc.. and the treatments therefore. The surgery for the implant would/will be tricky. I am, though, willing to risk my life for the possibility of some relief - however small it may be!

At this point, I am lucky if I sleep 1 or 2 hours a night. Untreated pain can be extraordinary. (Even though I am on high-level narcotics for my other pain, it is not helpful for these issues whatsoever.)

I certainly do hope that someone begins a massive attempt to extend knowledge to the general population, as well as asking for funds to a charity, where the money would benefit Migraine and other severe headache research.

Please take care, and I wish you all much less pain!

~Heather

Q: WHY NO RESEARCH INTO THIS?

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