WHY NO RESEARCH INTO THIS?

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. 

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

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.

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

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

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