Still Trying Biofeedback for Migraines

After everything I went through with the first person I saw for biofeedback, I don’t think many people would have blamed me if I never went back again to try to learn these techniques.

I last left off where my biofeedback person blew up at me three times during my last visit and I honestly didn’t intentionally push his buttons, but I also had had enough and finally called him on things he was saying.

He would claim he could cure Migraines. I let him know there was no cure for Migraines; that it is a genetic neurological disease with triggers that can start a Migraine occurrence. Next he was upset that I had a higher Migraine earlier in the day and he would rather I come into his office with a raging Migraine so he could cure me. He also really lost his cool as he accused me of understating my Migraine intensity levels and got very serious as he was telling me that maybe my wires were really crossed and that I probably could pass a lie detector test.

As far as understating my Migraines, I feel I am consistent for me from one Migraine to another as far as I record them. I also told him that I don’t understand how someone could drive to his office with an intense Migraine going on and how I’ve seen many people claim to have a level 10 Migraine while playing around on the internet. It’s downright dangerous to drive with a rampant Migraine! He was also very serious when he agreed that I might be an anomaly and that maybe my wires really were crossed because I would warm while in sympathetic (fight) mode.

I really didn’t want to give up on biofeedback because of this one incompetent therapist. It took me a while, but I had finally found somebody else to try. It was difficult to find her as every place I called said that they either no longer did biofeedback or that they had too long of a waiting list. One of these former biofeedbackist, gave me the name of someone who was trying to return to practice after a long hiatus due to a bad injury she sustained.

I had talked to this therapist on the phone a few times and she really seemed like she was going to be good. Since she was out of practice for a while, we also negotiated a rate that was about a third of what she said she normally charged.

Do you believe in “it’s a small world”?

As we were talking during our first session, she asked questions around my first experience with biofeedback. It started off simply and she thought this therapist did not do a lot of things correctly. Although the two of them were over thirty miles apart and in opposite directions from my house, it turns out she taught him how to do biofeedback, she certified him and they used to travel together to different conventions! You can only imagine how I felt after hearing that bombshell!

I started getting very uncomfortable with her as she was making comments about him. In one way I was relieved that he was the problem with our sessions, but I also felt funny about things she said. It made me question the confidentiality of our sessions. She went on to say that she knew he was having financial and personal issues and had hoped he was getting better. She continued that he had really been very promising in the field when he started and she continued to commiserate about him.

Personally, I felt if she would say these things about my prior therapist to me and about an old friend of hers at that, I wasn’t sure what kind of confidentiality I could expect; not that I wasn’t going to say anything that mattered, but I was going to be very guarded from that point on. I just wanted to learn biofeedback techniques, is that too much to ask?

She said she was a Migraineur too and had just gone through a very painful accident and was trying to get back on her professional feet. During some of our sessions, she would use very outdated terms and gave me some type of a headache test that had about seventy-five questions on it. She was going to tell me the type of headaches I experience.

It didn’t go very well as when I got to a question I told her I didn’t experience those symptoms, but I knew it was going to be linked to TMJ which I have. She got a little combative and insisted on how I know I have TMJ as she now suffers from severe TMJ due to her accident. Again, I swear I didn’t do anything to provoke this engagement.

She really was a nice lady; just out of practice for too long. I felt bad as she even bought updated software to use for our sessions and often commented on how she was either practicing on herself or a friend before I got there. I almost feel like an elitist when I found she bumbled around too much for my comfort and even literally crossed her sensor wires during some tests.

These sessions were supposed to continue after my first round of Botox. I never made another appointment with her as I felt I was not going to get my monies worth out of her either.

I will tell you about my third therapist next time, but during the first session with biofeedback therapist number three, I let her know straight up that she was my last chance. If she could not help me learn biofeedback techniques, I was not going to pursue it any longer even though I felt there could be some value after learning it. I was also very candid about Migraines not having a cure and intentionally put her through the ringer a little bit with my questioning. How do you think these sessions faired?

I really don’t think biofeedback should be as stressful as I had experienced. Have you had unreasonable or unusual biofeedback sessions? My last double session with therapist three is tomorrow…

Migraine App and Giveaway Winners

I’ve had a little over a month to try out the new My Migraine Triggers^TM app which was developed by the makers of Excedrin^® Migraine along with a leading neurologist who is well respected in the Migraine field. This app is available on iTunes for free.

Unfortunately, I’ve had plenty of opportunity to test out this app. I’ve also shown a few people how easy the app is to use and where they can go to download it for themselves. Don’t tell my sister I said this, but she was actually able to download this app by herself and found it pretty easy to use too.

My sister liked the way things flowed from one screen to the next; they seemed logical, easy to maneuver around and simple to add anything she wanted to within the different areas. The only feedback she had was that when she would enter in her Migraine after it started, she didn’t know how to answer the question ‘How long did it last’ since her Migraine was still going on and hadn't completed yet.

How well did the app work for me? Overall, I really liked the app too. It’s so much easier to keep track of my Migraines using the My Migraine Triggers^TM app than trying to write everything down in the heavy planning calendar that has limited writing space which I carried around before testing the app; to help keep track of my triggers, symptoms, medications and pain levels.

I liked the way I could track possible triggers, to see if they may be delayed triggers that could take up to 48 hours to trigger a Migraine.  This feature may be more helpful for me when I get my Migraines under better control, but it’s something that my sister can use now.

The My Migraine Triggers^TM app is real easy to use and has the flexibility to add what we need to any of the areas we should track especially since we are all different and have our own tracking needs. I like the quick charting capabilities where I can simply see potential triggers I’ve been exposed to and pain levels experienced in a pie chart format while the percentage of triggers I was exposed to 24-48 hours before a Migraine, symptom frequency and pain locations were clearly read in a bar chart format.

I found I could put my preventative medication changes in the notes section as well as anything else of special interest to me or my doctor. Everything I put into the My Migraine Triggers^TM app also reports out in a diary log. This diary and the graphs can be printed out or emailed wherever you want.


I mentioned in my first post about the My Migraine Triggers^TM app that I also keep a spreadsheet. This spreadsheet has grown over the years and gives me a lot of what I like to see around my Migraines, but it is also missing things that I would love to see in a Migraine app.

I currently have two graphs on my spreadsheet which track my Migraine evolvement over the year. It graphs them month-by-month and week-by-week where I can see some very interesting things that have happened over this period. It also includes trend lines so I can easily tell the progress of how my Migraines have been going.

There are two important items where my spreadsheet falls short and I would love to have an app take over these holes. I need to track my FMLA usage and find a way to track my MIDAS scoring. I feel both of these items would be reflective of how I am coming along with my Migraine management and my doctor asks for MIDAS with every visit.

I’ve adapted my spreadsheet for some things my Migraine specialist requires – it will calculate average number of Migraines and intensity level per month as well as the average number of Migraines and intensity level per month since my last doctor’s visit. It will also highlights the most severe Migraine and the number of times I was at that level since the last visit. For me, it also keeps a running total of the medications I’ve taken on a MTD and YTD basis. My spreadsheet doesn’t touch FMLA or MIDAS yet.

Since I’ve never really tested a Migraine app on a small device before, I can only give a wish list that I don’t even know if it is too outrageous to ask for from an app. In addition to FMLA and MIDAS, I would want to be able to export the data into a format I could use to import into my spreadsheet or use wherever else I would see fit. I’m not sure if I’m ready to give up my spreadsheet yet. The other small area I would want to see improved on the app is that the report currently does not list the medications I’ve tried and put into the app.

Now for the fun part as congratulations go out to the winners of the Excedrin^® Migraine Relief Kit giveaway. First of all, I want to thank everyone who participated by commenting on my blog. The two winners, who were chosen at random, are Pam West and Snubs. Pam and Snubs, please contact me through MigrainePuppet at gmail so we can make arrangements to give you your Excedrin^® Migraine Relief Kit.

Overall, I have to say that I like the My Migraine Triggers^TM app so don’t forget to download it from iTunes to try it out for yourself. Also, stop by the Excedrin^® Facebook page and on Twitter to help you with your Migraine journey.

Disclosure: I am an Excedrin^® Migraine brand ambassador. One iPod Touch to test the app was provided by Novartis Consumer Health, Inc., the makers of Excedrin^® Migraine; my journey for a Migraine-free experience is my own.

Track Migraine Triggers

I had been testing the My Migraine Triggers^TM app for almost a week before I went to NY for its official unveiling. The makers of Excedrin^® Migraine developed this app along with one of the top Migraine neurologists (one who I’ve written a little snidbit about in the past) which is available for free on iTunes.

While I was showing some people the app, the comment was made about how big of a trigger sleep must be for me since that took up a large piece of the pie chart the app offers. The picture of my pie chart as it appeared on that day is pictured above.

I will admit that the items in the chart can be big triggers and exasperating factors for my Migraines. It was a busy week with a Migraine every day. During this trial time, I still had a few cold nights without power because of the hurricane, we had a snowstorm before the power was even restored and this was still a very stressful time.

Those triggers are easy to identify and track. For me, it’s harder to identify the not so obvious triggers such as some foods.  Did you know that food triggers can trigger a Migraine up to 48 hours after you consume the food?

The My Migraine Triggers^TM app has the flexibility to add in the foods I eat so I can track them on days I don’t even have a Migraine to see if they may be a delayed trigger. It’s easy to add foods or anything I might want to track.

I can add the foods I eat and track other possible triggers by putting in a new entry every day and answering the question 'Did you have a headache?' with the answer 'No, I did not'.  I can track the foods I ate that day, barometric pressure changes, temperature changes and really anything I want because of the app’s flexibility.

By entering a comment to this post or my previous post, you will be entered into a drawing to receive one of two Excedrin^® Migraine Relief Kits. Winners will be selected at random when you enter any family friendly and non-commercial comment to my blog post. This kit contains the following items that can help manage some common Migraine triggers or exasperating factors:
• Sleep mask
• Noise cancelling ear buds
• Branded stress ball
• Herbal compress
• Branded water bottle

The Excedrin^® Migraine Relief Kit giveaway winners will be announced in my post the first week of December when I review the My Migraine Triggers^TM Mobile App.

What’s your Migraine relief story? Everyone is different and we all find our own way of trying to deal with our Migraines. Share your story and knowledge of how you treat your Migraines and you could win $5,000. All of the prizes, details and official rules can be found on the Excedrin^® Facebook page.


Did you know that less than one-quarter (22%) of women surveyed find their current tracking method effective in managing Migraines?

Besides foods, weather, stress and sleep patterns like me, what other things would you want to track to help you or someone you know try to manage their Migraines?

Disclosure: I am an Excedrin^® Migraine brand ambassador. One iPod Touch to test the app was provided by Novartis Consumer Health, Inc., the makers of Excedrin^® Migraine; my journey for a migraine-free experience is my own.

Migraine Relief Kit Giveaway

How do you track your Migraines? My tracking is somewhat convoluted and I am always looking for a better way to track and report them to my doctor.

I have been asked to introduce and review a new Migraine application. The makers of Excedrin^® Migraine developed a new app, My Migraine Triggers^TM, with a leading neurologist that is available for free on iTunes. With this app, Migraine sufferers can track their Migraine triggers and gather the data put into reports and charts that can be easily shared with physicians.

This new app was unveiled at a media event in NYC with actress/singer and American Idol winner Jordin Sparks. Jordin seemed so down to earth and told us about her Migraines and how her mother has real debilitating Migraines. She said she won’t be back home until the day before Christmas when she plans on doing all of her holiday baking and hopes her friend will be able to get all of the ingredients she will need for her baking.  I also hope Jordin paces herself as I know I've learned my own lessons from holiday baking over the years and try to be careful not to overdo it.

I will be giving away TWO Excedrin^® Migraine Relief Kits.  Two of my readers will be selected at random when you enter any family friendly and non-commercial comment to my blog you will be entered for a chance to win an Excedrin^® Migraine Relief Kit. This kit contains items that can help manage some common Migraine triggers or exasperating factors such as irregular sleep habits, loud noises, stress, etc:
• Sleep mask – soft & smooth / cotton & silk with adjustable strap
• Noise cancelling ear buds – high performance with interchangeable silicone ear pieces for a perfect and comfortable fit
• Branded stress ball – my boys like when I squeeze the ball rather than them!
• Herbal compress – place it in the microwave for heat or the freezer for cold therapy
• Branded water bottle – we have to stay hydrated

The Excedrin^® Migraine Relief Kit giveaway winners will be announced in my post the first week of December when I review the My Migraine Triggers^TM Mobile App.

I always struggle with how I should track my Migraines. Currently, I carry a planning calendar in my purse and then translate it onto an electronic spreadsheet where I can make it report different things for my doctor.

The smaller calendar makes it more convenient to carry and write some things down, but it also limits the amount of information I can track due to space constraints in the daily boxes. I battle capturing the information I need to write down if I’m trying to identify a new trigger or answer the question as to why my Migraine patters seemed to have changed.

I had only been using this app for about a week before the media event. However, being a chronic Migraineur, I was able to have some good conversations around it. There was someone at the event who was also trying out the app. She can have red wine sometimes but not always as it sometimes triggers a Migraine for her. She was trying to think of sleep deprivation or dehydration and other triggers like that which may have contributed to her Migraines when she had the red wine.

I asked if she tried to track what she ate when she drank red wine. She hadn’t. I mentioned it could be every time she has shrimp and red wine that this combination may trigger her Migraine. She hadn’t really thought about food and we talked about how easy it was to add additional possible food triggers to the My Migraines Triggers^TM app to try to identify them. The app will gather your Migraine data that can be put into reports and charts which can be printed or emailed to share with your doctor. Here is a sample of how easy it is to add shrimp as a food you eat and to try to track different foods you try:

The left box shows the foods that are listed and that you can add your own.  The right side show how easy it was to add shrimp and then how it was checked off as one of the foods that was consumed that particular day.  It really is that easy!

Migraineurs know that identifying and tracking triggers is one of the most important tools for managing our Migraines. As I mentioned, I still struggle with the best way to record and report my Migraines. I am testing this new app and will provide my honest feedback about this new app – what I liked, didn’t like, would change, etc.

I can be very particular in this area and already know I have a few things I would love to see, as a chronic Migraineur, added to any app I may use. I also know that I don’t like the double entries I currently use or carrying around the extra bulk and weight of the planning calendar.

I’d really like to hear more about how you currently track your Migraines. What tools do you use? Do you find the reporting capabilities from your app or tools you use are what you need to share your information with your doctors; are they effective?

Disclosure:  I am an Excedrin® Migraine brand ambassador. One iPod Touch to test the My Migraine Triggers mobile app was provided by Novartis Consumer Health, Inc., the makers of Excedrin® Migraine; my journey for a migraine-free experience is my own.

Sandy Migraines

In our community, we hear how difficult it is to handle weather because of barometric changes, but this past week has probably affected millions of Migraineurs when hurricane Sandy came rolling through the upper east coast of the US.

Besides barometric pressure, there are other things that can help us with our Migraines. Some of these things we have to be prepared with ahead of time while others I don’t know if we could ever be prepared to really deal with them.

The biggest factors that I can think of right now are food, if you have food triggers, and light if you are light sensitive and need to deal with alternative light sources. I sit here typing on battery power and a borrowed internet supply while under a few blankets and listening to my husband snore away as he cannot use his CPAP machine right now.

I have a lantern that I must hide behind something else so I don’t have the light directly shining in my eyes. If I dared to put sunglasses on, I wouldn’t be able to see anything at all as it would be way too dark. This often makes me wonder if I will ever become normal again as far as lighting is concerned.

Before the storm, we tried to prepare the lighting and lantern situation as much as possible. I have to say, almost a week into this blackout, and the lights seem to be working fine except that I find I cover them up either with a blanket, my hand or any miscellaneous object I can find so the direct light does not affect me.

We needed to make sure that I had some nonperishable foods available around the house that would not trigger me which basically rules out any canned foods. While I am at home, I do have some special granola bars, PBJ (but I can’t have too much or it will trigger) and other small things, but these do grow old very quickly. I also have to make sure I do eat or I will trigger. I am definitely not complaining because things could be a lot worse. I have a roof over my head, food to eat and everyone I know of is safe. Last I heard, they anticipate having our power restored midweek.

Where I want to give my biggest and unexpected kudos as a way to deal with hurricanes to is to my place of business. I’m not saying that because I’ve someplace warm to go to everyday or even charge my batteries, but they have done some very big little things that have helped employees which have also helped relieve some of the strain from my Migraines.

Last week I didn’t need to worry about lunch for most of the week as they provided that plus I could pick things I could eat.  Last week and this coming week, I can wear jeans so I don’t need to worry about cloths as much as normal. I had a place that I could go to, to take a nice warm shower every morning before work.

On the bigger picture and beyond managing my Migraines, I just have to add that my company has not only donated a very, very generous amount to the hurricane, but they will be matching employee donations too.

They have also opened up their facilities this weekend to family members so they can take warm showers, have a place to use the internet, watch some TV, use a gym, a game room (they must have brought some things in because I don’t think we normally have one!), have a bite to eat (the café will be open) and so many other nice amenities.

During the week, my team let people go out during business hours to get gas. That might not sound like much, but the gas lines here are like they were back in the ‘70s. I hope they will start easing now that more people are getting their power back; it has been ridiculous and just another stress on top of a very taxing situation.

Despite trying to be as prepared as I could be, it was not a fun Migraine week. I managed the best I could and did go to work every day as most of my team was affected by the storm. I still believe the Botox helped during this time as it kept some of the clarity I don’t think I would have had otherwise. I’m still trying to figure out Botox, but hoping to get a better handle on it when things go back to normal in my life when using it.

Food and lights were the triggers I thought of that we could prepare for ahead of time since these are things I deal with all of the time. What other triggers can you think of and how would you help prepare for them ahead of time?

Comment to FDA about Migraines

We have from now until November 1st and not a day later to be heard. It is necessary for us to write our comments in response to the FDA request on the patient-focused drug development initiative.

The FDA is announcing a public meeting and an opportunity for public comment related to FDA's patient-focused drug development initiative. This effort provides for a more systematic approach for obtaining patient perspective on the disease severity and the currently available treatments for a set of disease areas. The FDA is publishing a preliminary list of nominated disease areas for the patient-focused drug development initiative and the criteria used for nomination. The public (that's us!) is invited to comment on this preliminary list through a public docket and at a public meeting where FDA will provide an overview of the patient-focused drug development initiative with discussion of the nominated disease areas.
(Picture taken by my son)

Migraines affect over 37 Million Americans. Peeing at night was put on the preliminary list of nominated diseases areas over Headache disorders and Migraine.  Really?!?!

Go to the FDA link to post your response. We You need you to comment.  If your response will be longer than 2000 characters, you can attach a document with your comments.

It only takes a few minutes to post your comments. It could not only change your life, but the lives of millions of other people. Here are some stats if you need them to help you make your comments.

It’s simple to get there to say your peace:
Click on this link http://www.regulations.gov/#!documentDetail;D=FDA-2012-N-0967-0001 and then go to the Comment Now! blue box in the upper right hand corner. 

We have from now until November 1st to enter our comments.

We deserve better treatments, a better quality of life and can’t let this chance pass us by.

Me Time

During Migraine Awareness Month in June, we had a blog topic for each day. One of the topics I wrote about was titled “Tea for Two”. We were supposed to write about who we would want to sit down to have tea with for the purpose of explaining Migraine disease to them so they would truly understand it.

The person I chose was me. Although I haven’t formally sat down with me yet, I’ve had many deep conversations with myself lately. One of the things I said made me realize that I need to have more 'me time' no matter what else is going on around me. It may be tougher one day compared to the next, but I have to find that time regardless. If I’m not any good myself, I won’t be any good for anyone or anything else I try to do.

This reminds me of a post that Dr William Young of the Jefferson Headache Center wrote on the Alliance for Headache Disorders Advocacy (AHDA) website where it is especially important for chronic Migraine patients to find a third-space. Migraine disease is so consuming, and has such an impact on family and work relations, that finding this third-space sanctuary becomes an ever more critical inoculation against becoming overwhelmed. It doesn’t matter what that third activity is as long as it involves something that is meaningful to you.

I’ve been a little overwhelmed with things this summer, but I feel like I’m getting more balance in my life as I go back into my third-space which gives me the ‘me time' I was missing for too long. One of my third-spaces is reading what my blogging friends have to say and writing about my Migraine journey. Another one of my third-spaces has always been sports. I’ve had a tough time with this one for the last couple of years, but I have actually managed to play two volleyball games this month and look forward to playing as many as I can this season.

What is your third-space? Does it give you the balance you need in your life? If you don't use your third-space right now, what would you like to do?

Sleep Apnea

I’ve read about Migraineurs needing to take a sleep study due to the possibility of sleep apnea. I wanted to give you another reason to make sure you take the sleep test.

For years, I have been telling my husband he has sleep apnea. Yes, I know I was diagnosing him, but I wanted him to get it checked out by a real doctor. Somehow, he always knew better and just dismissed what I had to say despite his very classic symptoms. He would snore loudly, have breathing cessation and would abruptly take his next breath. Just to make it clear, none of his symptoms were subtle.

Sleep apnea finally caught up with him. He spent the last week in the hospital. In case you didn’t know it because we certainly didn’t, sleep apnea can lead to right-sided heart failure. Yes, he had all of the classic symptoms of heart failure too and we still needed to tell him he was going to the ER and didn’t have a choice.

Because he never had his sleep apnea looked at, he has many more issues to deal with now or should I say we have many more issues to deal with now. MedlinePlus gives a good explanation of what typically causes this type failure.

Normally, the left side of the heart produces a higher blood pressure in order to pump blood to the body. The right side of the heart pumps blood through the lungs under much lower pressure. High blood pressure in the arteries of the lungs is called pulmonary hypertension. The right side of the heart has a harder time pumping blood against these higher pressures. If this high pressure is present for a longer period of time, it puts a strain on the right side of the heart.

What I have found tough this weekend is trying to get help him, get him setup at home and caring for my Migraines which, of course, have been out of control. I usually take much better care of myself on weekends so I can make it through the workweek. How do you manage your Migraines when you are trying to help someone else get through their own health difficulties?

If you are asked to do a sleep study for your Migraines or even just because you might have sleep apnea, it is better to get your study done and take care of what needs to be done so you can help your Migraines and the rest of your body too. Please don’t keep putting it off.

Migraine Accommodation Pictures

I’ve talked about some of the accommodations I have for Migraines for a while now. I’ve also said how I am a visual person and believe a picture is worth a gazillion words.

I have recently taken pictures of a few of the accommodations I have and wanted to share them with you so you can see what I’ve been so excited about. I just hope the pictures are clear enough to display how awesome they really have been as I am by no means a photographer and just started taking any pictures this year. I also needed to turn on that flash component which I swore I would never use.

The first picture I have will be a demonstration of the knee pad in my car. I really don’t like this picture as it can hurt just looking at it, but I think you can relate to when the sun is shining through the driver’s side window and your visor just does not do the job.  The visor is just a little too short given the angle of the sun.  Ouch!

As I was in my car one day and found myself in this very predicament, I remembered that I had a simple knee pad in the car. I thought it was the right size and shape.  It was and fit perfectly on the end of my visor! I didn’t even have to worry about how to attach it since that is part of its makeup. It never leaves my car now and I've been keeping it busy at work protecting my head, not knee ever since.

The first picture above was also taken where you can see the driver’s side window of my car which was legally approved to be medically tinted at a 60% Visual Light Transmission (VLT). I would have preferred a little higher VLT percent because that would allow less light to come through, but it does help with the everyday light. Tinting Laws do vary by state so you probably want to check the laws in your state if you want to tint your car windows. My back windows have a higher VLT, but that doesn’t help me when I am driving and the sun shines directly on me as in the picture above.

I also believe there needs to be a nice balance between the VLT that we use on our front windows because we will have this same tint when we drive at night which could make it much harder to see. I still like my tint and want my next car to have tinted windows as an accommodation too. The chart above shows the different VLT percentages. You can see how it gets darker as the percentage increases.

My cube accommodation at work is what I couldn’t live without since this is where I spend most of my time. I also have a very hard time when I leave the safety of my ‘cave’ and either end up putting on a good front, only go out for short spurts at a time, wear a hat, get a Migraine I can work with or end up having to go home. I hope this picture does my accommodation justice as I don’t think I work in as dark of an environment as it may portray. I really do have plenty of light and actually have extra light sources that I have NEVER used.

I want to point out a few things in the picture of my cube. First and foremost, I will start with the lights. The picture to the right is an excerpt of the lights. In the two purple (for Migraine awareness) circles, you should see spotlights. The spotlight over my cube (on the left) has been disabled while the one over the cube behind mine is shining in all of its glory.

The other light in the picture that has the purple arrow pointing to it has light sleeves over the fluorescent light tubes. These sleeves reduce the light output as well as decrease some of the lights flickering effect. They are solid colored about a third of the way and then transition around to a clear color. The sleeves can be twisted around the bulb to allow different amounts of light to pass through.




I’m not sure if you can see the mug in my work cube. It’s one of my fun Migraine mugs and a way to help support advocacy efforts. Each item that is sold in the shop is designed to let us have some fun while making serious points. There are clothes, coffee cups, iPad sleeves and much more. The best part is that all proceeds from sales are donated to non-profit organizations for Migraine and headache research. Although I don’t drink coffee anymore, I use my mugs for water, an occasional tea and plenty of conversation. I love the different sayings you can get on the various paraphernalia you have to choose from.

I have a whole bunch of hats that seems to be multiplying. My family has even started giving me hats as gifts! I always have a hat in my purse, I keep one in my desk at work and even keep a bunch of them in a bin in my car where they are always readily available. I really like my hats as they are very comfortable and large enough to fit my big head.  My hats are big enough that they don't add any extra pressure to an already tender head either. I am not a photographer and hope you can make out some of my neat hats. There are even hats with sparkles in there which is something many would not consider my style.

The last picture I have today is the rolled up towel behind my rear view mirror. I think it's a little hard to see, but how many times do you drive down the road with the sun glaring between your two visors? As you can see in the pictures, the towel fills in the gap between the two visors nicely and makes a much more pleasant ride.  The top picture shows the visors up while the bottom picture shows the towel neatly tucked behind not only the rearview mirror, but also both visors.

There are some people who don’t understand my accommodations to the point where I still get funny looks or comments, but I don't care as I would not be able to make it through my day or drive without them. I hope these pictures were able to help you see what I’ve been talking about all of this time. Did the pictures help?

What other accommodations or devices do you use to help with your Migraines? 

Fried Migraine Brain

"Why didn't you listen to me?" How would you like to hear that from your Migraine specialist?

Yes, I knew better. Yes, I didn’t think I had increased my medication too quickly until afterward. Yes, in my first visit my specialist stressed “slower is better, slower is better".

During my first appointment, he increased my dosage three fold and I managed that just fine. For my second visit, he doubled my dosage so I thought I could handle it again with no problem.

Mathematically, I already had more medication in my system so proportionately, the stepped up increased would be much less. The one element I didn’t factor in was the human component. Silly me, I’m not a machine.

Yes, my doctor said slower is better and I read all of the time about how much safer it is to take it slower. I definitely understand more now and I never even reached the increase to the full dosage – I stopped after the second increase.

This year has been one of the toughest years that I have experienced. My Migraines seem to be getting the better of me. Work has been more difficult because of them too. I am extremely fortunate that my boss has been very patient with me up to this point and I am always very concerned that his patience could run out at any time. I don’t know that I would have made it through some of my rough patches if I had been reporting to someone else.

This is a big reason why I was so anxious for my preventatives to start working and why I made my big mistake and increased it a little too quickly. My symptoms from increasing too fast were definitely counterproductive to working effectively. Some of these symptoms were I would forget things too quickly, I could not type, I could not think and I sounded like I would keep tripping over my words at times.

Before my last doctors visit, I decided I would step out on a limb. I was running out of new ideas and tired of feeling like I was complaining all of the time. I decided I needed to bring a testimonial with me to my doctor’s appointment of what I can be like.

If you think about it, this can be a very difficult question to ask your boss, but also an equally hard question for them to answer and give you a frank answer. I first told my boss that I was going to ask him a question, but it was perfectly ok if he didn’t want to answer it – yes, a little awkward for both of us. I asked him if he could ask my doctor a question, what would it be.

He didn’t hesitate. He basically said that on certain days I seem to have a more difficult time assembling thoughts than other days, but he also knows that I am going through some medication changes. He said he also notices when I am not a hundred percent. Nothing he said surprised me as I know he has been noticing my difficulties which I have to add can increase my frustrations. It’s tough to actually hear him say the words, but I know he said this to me as something to tell my doctor because he wants to help me. I really do appreciate everything he has done to support me during this challenging time.

As it turned out, while I was at my doctor’s visit, I had a Migraine and because his lights are very bright, my speech was probably the worst it had been in a long time and I hadn’t even increased my dosage in over a month. He could definitely hear my speech issues and see my frustration.

He decided to decrease the dosage back to where it had been before the last set of increases and only titrate back up when I am completely asymptomatic. He is also putting in for approval for Botox and I hope I was able to recuperate some from my prior bumbling with him.

He had mentioned Botox since my first visit with him although neither one of us was really ready to go there at that point. Somehow, with this appointment, we both knew this would be it. He just started filling out the application to go to my insurance company. I had done some pre-work and had already listed the different meds I have tried in the different classes.

In order to cover Botox, my insurance requires more than 14 days per month with headaches lasting 4 hours a day or longer and you have to have tried and failed trials of at least 3 classes of Migraine prophylaxis medications of at least 2 months in duration for each medication. I fit that criterion for the 5 different classes that my insurance company listed. Anyway, by giving him a medication in each class, hopefully I was able to redeem some of my credibility from the boneheaded move I did.

If I get approved for Botox, I hope to not need to increase my preventatives further and maybe even eventually decrease some of them. It’s been a few weeks since my last appointment and I haven’t re-increased the dosage yet. I’m not really sure when I’ll be ready to do that although I still want to get rid of these Migraines.

I am ready to be done with this, but I know I have to be patient too. Slower is better...

Have you done any idiotic moves because you wanted to hurry up and scoot your monster away too?

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Now We Have a Plan

"I’ve never met anyone like you before. I never would have imagined someone could relax while being active."

But, he doesn’t understand me. I know he’s not right for me and I’m not going to take it anymore! How should I break up with him? 

We still have our next ‘date’ set up, but I won’t be going to it and will be letting him know about it soon. I still believe in biofeedback (BFB), but I know Mr BFB is not the right guy for me; especially after our last session.

I like to take things to the extremes. You know, like real life scenarios. So when Mr BFB said that I probably warmed better with my eyes open because I was a visual person, it opened up a whole new world of experimenting for me. This past week I tried warming while doing some activities I find relaxing. I’m sorry, I don’t find listening to soft music with my eyes closed very relaxing. This allows my mind to wander to all ends of the earth. No, not very relaxing at all for me.

I like to relax by thinking. Not the everyday intensive work problems thinking, but figuring out little things. Dorky me found I could warm very quickly by keeping busy with things like playing little games, reviewing notes, updating/coding spreadsheets, talking to Fido and reading different blogs to name a few things. I practiced the other good BFB habit things while keeping busy like not crossing my legs, having good posture, not crouching my shoulders and breathing with my belly while making sure my thermometer hand was always in the right position too. I stay as relaxed as I could while staying busy doing things I enjoy doing.

I told Mr BFB that I watched the finger thermometer shoot up very fast. I couldn’t believe how suddenly it increased. This was when he said that he never met anyone like me and never would have imagined that keeping busy would have warmed anyone. He rolled his eyes and made a comment about how he could never find it relaxing to code an excel spreadsheet. What can I say; that’s me!

I’m still trying to sort out many things that transpired during this visit. I was getting annoyed that he didn’t seem like he was going to do any BFB again during this session. So, I brought in a little competition. I mentioned that when I received the call from the Headache Center and Dr Psych recommended BFB that he mentioned how he performs his first BFB sessions with his patients. That he does mini tests in five different areas of BFB and then will work on the areas they feel need the most work.

Mr BFB immediately sat up and became interested plus gave himself away as not listening to different things I had been talking about. I know I’m boring, but he’s supposed to be a trained listener. He kind of lost his composure a little and probably needs to practice his own BFB a little more. 

He started drilling into me; what five areas? What five BFB areas did he do during your first session with him? Can you remember the five areas you did with him? After regaining his poise back while finally listening to how I was answering his questions, he started to ask if they ever mentioned the five areas that they test. Well how the heck would I know? I came in there telling him I didn’t even know how to spell BFB! 

I think he had a cheat sheet or something on his clipboard as he became all proud of himself for figuring out what he thinks the five areas of BFB my Headache Center covers when they do BFB with their Migraine patients. Then he told me that NOW WE HAVE A PLAN. Now we have a course of action. He would always talk about these other things we would try since the first week I was there, but he never brought anything out. And now he’s going to copy what he thinks another place does for their Migraine patients when he already ‘cures’ most of his Migraines patients?

There’s still more…

He kept talking about how BFB will train us to open up the vagus vein (that’s what he kept calling it) which would allow the blood to flow to the extremities like to the fingers and feet and away from the Migraine. Many of his patients never have another Migraine after they learn this again. Most of his patients are ‘cured’.

I couldn’t let the ‘cure’ word go. He actually hadn’t used that word during any sessions and only used it when we talked on the phone to setup BFB. During this session, he used the ‘cure’ word and the other ‘c’ word a few times! 

I said Migraine is a genetic neurologic disease and I believe that stress is an exasperating factor where it may exasperate some of the other triggers we have, but it will not trigger a Migraine on its own. 

He immediately started repeating his spiel about the vagus vain (you had to see what he kept demonstrating with his fingers next to his neck every time he talked about this) and then started throwing in a few ‘causing’ a Migraine. Of course when I started talking about no ‘cure’ and genetics being the ‘cause’ he would throw it out even more. Well, that conversation was not going to go anywhere quickly either.

Yes, still more to come…

He asked how my stress levels have been in the last two weeks. I told him stress has been nothing out of the ordinary except that my oldest son was diagnosed with a chronic pain condition. (I’ve never mentioned to him that my youngest son has Migraines too.) His response was to basically start going over his own chronic pain conditions - on my dime. Then, I think he caught himself again and gave me helpful hints on what my son can do to take care of himself. My son has an excellent doctor who gave him very good advice on what he needs to do.

One more thing!

He would like me to come into his office with a full blown Migraine all of the time. I think this is so he can show me that he can ‘cure’ me. It really set him off when he found out I had a six earlier in the day and was only around a three while I was there. He also doesn’t like my numbers in my BFB journal since many of his other patients have 8s, 9s and even some 10s. He feels my numbers don’t reflect the same numbers that are in my Migraine journal which I ended up showing him too. He ended up accusing me of underrating the intensity numbers I keep in both of my journals. I admit I don’t know how to put my pain to a number scale, but I believe I am consistent for me and think that is the most important thing to do. 

So you see my last session with Mr BFB was a very odd session. I will not go back to him. Just thinking about him brings on more stress than BFB is supposed to relieve. This whole thing sounds kind of counterproductive.

I do want to learn more about BFB and I am very disappointed in all of the techniques I didn’t learn. It was so hard to find him and I actually found him through two different sources. I also had problems with other people in the field not calling me back, but I am better off without than with him.

Have you had any interesting sessions you’d like to share? I almost feel alone in my experiences but then also wonder if I may have instigated some of it too…

Migraine Biofeedback – Wires Crossed?

I’ve been having a tough time trying to figure out this biofeedback stuff and actually had Mr Biofeedback (BFB) ask me during our third BFB session if I thought I should discontinue the hand warming. I started off my second session by telling him I thought I was wired backwards and we spent the much of the third session talking about how he thinks my wires might be crossed too. Niiiice.

How would you feel if you ended up baffling your Mr BFB During my last two visits with him, he even ended up looking up different things on his iPhone that we were talking about. We didn’t do any BFB stuff during the third visit; new or old stuff.

In general, so much has been going on lately. I finally finished the increase of my medication. Everything went fairly well, but now that I am done, I am starting to feel some different side effects. I even increased the meds at a little slower rate than my doctor told me to although he did stress that slower was better. It took over a month and a half to increase the med. It’s hard to keep slow when all you want to do is feel better. But, slower is better.

Anyway, I’d been practicing the hand warming between the first two BFB sessions and didn’t have any real issues while warming. I usually hit well into the 90s and even raised my temperature by 20^o a couple of times - without clenching my hands, without putting my hands on my thighs or anything else that would artificially raise my hand temperature. My hands were open to the fresh air.

I pseudo joked to him that I thought I may be wired backwards at the beginning of my second session, but didn’t elaborate any further than that. However, I did mention that I noticed I would warm a lot faster after I opened my eyes He reviewed what I was doing when hand warming and didn’t see that I was doing anything wrong either. He commented that if I warmed better with my eyes open, that I must be a visual person. Yes, I am very visual.

During this second session, we did the skin conductance at the same time we continued the hand warming with the other hand. He said I’ve been doing a really good job, but I still felt like something was missing; even after that second session.

The skin conductance was kind of strange too. After he hooked me up, I guess I didn’t quite grasp what was supposed to happen. I could see all of the pretty pictures on the laptop screen and the music was blasting away. I even felt like asking him to turn it down a little, but he seemed to be enjoying the results as I was trying to absorb everything and understand what was going on so I didn’t say anything.

To try to show me what was supposed to happen, he asked me to stress myself out. I don’t know about you, but I spend a lot of time trying NOT to stress out and had a very hard time doing this. Do you know what finally stressed me? I got stressed because I could not stress out. I know, weird. I never said I was normal.

It was actually kind of cool to see how the skin conductance was ‘supposed to’ work. The pictures faded down, the music became quieter and some lines appeared at the very bottom of the screen that I did not see before stressed. These lines measured heart coherence and maybe some other things. I asked him about it. He understood what it was, but he either had a hard time explaining what it was or I was jumbling everything up as he was talking. I just remember his hands going off in all kinds of directions similar to when he was explaining that parasympathetic was better than sympathetic.

It was real interesting to see the difference in how the skin conductance looked and sounded between when I was relaxed vs stressed out. He also mentioned that it can take some of his patient’s months at three sessions a week to achieve the results I had with my first hook up. I’m not really sure how I should interpret that statement, but I can read it so many different ways.

My homework was to continue working with my hand warming. As I journal my results, I also try to jot down any silly comments, thoughts or observations I have while doing it. This helps refresh my memory and spark conversations while Mr BFB reviews my journal.

The Headache Center I go to does a complete evaluation of their new patients which includes different psychological profile tests to help get a more complete picture of their patients so they can treat the full patient and not give them medications that could be bad for another condition the patient may have that they may not even have been aware that they had. In between my second and third visits with Mr BFB, I received a call back from Dr Psychologist from the Headache Center. He gave me some of my results and also recommended biofeedback.

Well isn’t that just dandy! What’s a doubting girl like me supposed to do? What would you do if you had a Psychologist on the phone who just recommended BFB and you had some qualms about it? I picked his brain of course! He was happy to hear that I had already started BFB, but I don’t think he expected me to question him too. Oh well.

I gave him a high level overview of the two sessions with Mr BFB from a BFB perspective. I told him where I was having a hard time understanding BFB and wanted to know where or how he saw the benefits.

He explained that everyone has different approaches of going about BFB. Although Dr Psych’s approach is to give mini evaluations in five different BFB areas during his first sessions, it’s also ok to try the different BFB areas one session at a time like my Mr BFB is doing. Dr Psych likes to see which BFB areas get a good hit and then focus on those areas. This was enough to keep my attitude positive about BFB because I do still believe there are things I can get from BFB.

The third visit was nothing like I expected. It started by going through my journal. I told him that while I was warming at work, I had an incident that snapped me into sympathetic mode. But instead of my temperature going down as I would have expected, it shot right up. I watched it go up. I was definitely in fight mode as I could feel my eyes get bigger, I wanted to attack and I was not in a happy mood. I ignored the troublemaker and he eventually left. But why would my temperature go up?

I gave him another scenario where my temp darted up and another one where it plummeted when it should not have. We immediately started talking about these scenarios and other things that will make my finger temperature rise. This was when he said that maybe my wires were crossed. He also said that maybe I should stop the hand warming. I was totally confused at this point. I actually feel that hand warming is beneficial.

Sort of under his breath, he also pseudo joked that he thought I really might be able to pass a lie detector test. I know that during the first week we talked a little about BFB and lie detector tests, but I really don’t want to take one and don’t have any objective to falsely pass one. I just want my Migraines to get under better control.

Hand warming forces me to take a step back. It makes me relax. I don’t do enough chilling out. I have learned new techniques, but I still have a hard time staying relaxed for sustained periods of time. Yes, I go to extremes sometimes like trying to warm in the middle of work, in the middle of a loud office, in the middle of a very stressful day, but how else am I supposed to get better at relaxing? I believe in learning more under extreme conditions than giving up on something altogether that may have some merit.

Can you see my confusion around BFB? It looks like there are still three other BFB areas that I need to go through, to see if they may work better for me or maybe I can take something away to use as a new tool or technique to help bring my Migraines under better control.

What biofeedback stories do you have? Did it help teach you to chill out? Did it get you off of your preventatives? Reduce your preventatives? Did your BFB person look up stuff on the internet during your session?

Can’t Wait to be Cured!

As I was doing some of my research on biofeedback, I talked to one of the prospects who does biofeedback for Migraine patients. He made the comment that he loves when Migraine patients call him. That took me by surprise so I told him I hear of people running away from Migraineurs as they don’t know how to treat us or get frustrated by their lack of results. He became excited again and explained that he has great success with many Migraine patients and even cures some!

Alright, alright, I know there is no cure for Migraines. It is a genetic neurological disease for which there is no cure for yet which is why we need more research. By the way, have you and everyone you know signed the petition to urge Congressional hearings on the impact of Migraine and headache disorders yet? We only need about 20,000 more signatures! Please sign and help spread the word.

I know I need to give biofeedback a fair shot for different reasons. Although I’m apt to say I need to try it because my Migraine specialist ordered it for me, the truth also is, like I was telling my sister the other week, is that I don’t know how to relax. I know I have an outward appearance of being relaxed, but I feel like I’m always on the alert. Besides if it could possibly help me control some of my Migraines, then it is worth the try. However, I do have an alternate motive too. I have planned my first real vacation in a very long time and I want to be able to relax during this busy vacation where I am going to want to do everything. 

I enjoy watching other people even if they are in the process of observing others themselves. As I started my first biofeedback appointment, it was funny to watch Mr BFB (Biofeedback) while actually viewing me. I sat in the chair and naturally crossed my legs. By his reaction, I knew I shouldn’t do that, but it was also exactly what he wanted me to do. I played along and besides, I wanted to cross my legs so I kept them that way. I figured I would let him teach me my lesson when he was ready. 

I had some paper and a pen with me so I could write everything down to review again later. He said when people get tense, their hands and feet will get cold. He asked how I could warm my hands if I couldn’t rub them together or sit on them. I had to find another way. 

He wants me to purchase a stress thermometer so I can practice hand warming every day at home. He proceeded to strap his stress thermometer onto my finger. After about 30 seconds, we got a baseline hand temperature for me. 

Mr BFB said if the base hand temperature is 90^o F or above, that we would need to warm our hands by 2^o. If it is below 90^o F, then we need to raise our hand temperature by 5^o. He mentioned that some master type people, who typically meditate or do yoga, can actually get their temperatures up to 97^oor even 98^o. 

He let me know it could take some practice to warm our hands by the 5^o in the beginning, but we would get there even if it didn’t happen during this first session. I honestly wasn’t very concerned as he kept talking and my hand temperature kept plummeting. 

When I do my daily hand warming, he wants me to keep track of the time, the baseline temperature, incremental temperatures and any other significant notes. These notes can be if I’m listening to a CD at the time of the hand warming, if I’m experiencing a Migraine at the time, the beginning Migraine level, the ending Migraine level, if it is a particularly stressful day and just anything notable.  As all of this was going on, my temperature kept going down more.

He tried some type of stimulator on my brain since, of course, I had a Migraine going on. This stimulator has two stick like devices that are held on opposite sides of your head so that the sticks are in a straight line as if they went through your head.  It is moved around your head in this same fashion for short durations of time.  Do you think this is a bit freaky as I do, that he tried this stimulator on himself to show me how it was done and displayed great pleasure? 

Anyway, this stimulator was weird and cool at the same time. It would shoot electrical like currents through your brain. I could see flashes and hear crackling noises while feeling little jolts. I was just trying to visualize it hitting the Migraine. He said these currents are supposed to retrain the neurotransmitters. Ok. By the end, my Migraine was knocked down one level. I think he was disappointed that it wasn’t gone.

Mr BFB told me he loves when his patients come in with full blown Migraines so this machine will zap away their Migraines. Sometimes they will even go down to a zero. I am really trying to keep an open mind with everything and still need to understand all of this. Even if I can learn little things to help, it should be worth it, right? I think so. 

A lot of people with Migraines have pain that starts in their necks. As far as I know, mine never start there. As soon as he used these stimulators on my neck area, the whole stimulator thing stopped working even after he switched it to a higher level. He thought it was weird that the higher setting did nothing for me after that either.

Next we went back to the hand warming. Guess what the first thing he mentioned to me to do was? Of course uncrossing my legs! Then he told me about sitting up straight, making sure my hands were below my heart, that my hands were comfortable, in the same position each time I warm my hands and that my shoulders are not tensed up. As soon as all of that was done, my hand temperature started going up. He made other adjustments and the temp went up further.

Mr BFB did more talking. He was chatting about sympathetic and parasympathetic parts of the nervous system and how we want to use the parasympathetic part more. When I looked it up after, the sympathetic part is “fight or flight” while parasympathetic is “relaxation or slowness”. So yes, parasympathetic makes a lot of sense when you’re trying to relax. 

Once the pain starts, the sympathetic system goes into overload. Supposedly, biofeedback can lower your heart rate, decrease muscle tension and help you gain control over pain. Success in biofeedback sessions is measured by changes in intensity levels, volume, or speed of signals from machines they use, when thoughts and actions result in the action in the change of involuntary responses (like hand temp or heart rate).

Since my hand temperature kept going up, he made a joke that maybe he should tape his voice for me to listen to when warming my hands on my own. After I giggled, I said that maybe writing with the wrong hand helps too. That immediately threw him off where he apologized and said he should have strapped the thermometer to my other hand, but because of the way I picked up my pen and paper with the ‘wrong’ hand he assumed I was the other handedness. I didn’t look, but I’m sure that would have increased my temp even further. We couldn’t switch hands at that point; it would have thrown off this whole experiment.

Next, we went over stomach breathing. This is where if you put your hand on your stomach, you should be able to watch your hand go up and down while your chest, and definitely your shoulders should not move at all. This is how babies naturally breathe and only learn to breathe the wrong way as they get older by watching and imitating us stressful adults. As I did my stomach breathing, my hand temperature kept going up.

All in all, my temperature went up over the 5^o from my baseline mark which would have been significantly higher than the lowest recorded temperature during the session. 

As Mr BFB was wrapping everything up, he reminded me that he wants me to practice warming my hands every day. I had to ask if this ‘hand warming’ was just the teaching of my body to relax which is where the blood flow would end up going down to the tips of my fingers and toes where in the end, would warm them up. I think he liked that correlation. 

This was my first experience, my first session and my observations around biofeedback. I don’t know if biofeedback will help reduce my Migraines or decrease their intensity, but I do know that I need to learn to relax and get some of my stress/tension levels under better control. If biofeedback will help me do some of that, then it can be considered somewhat of a success. Next session will be skin conductance.

Have you tried biofeedback? Did it work for you? Did it help reduce the number of Migraines you experiences? Your intensity levels? Did it help you relax? How long ago did you try it? Do you still find it useful today?

Insurance Fiasco

One of the things my new Migraine specialist ordered for me after my first visit was biofeedback. I have to confess that this is something I have not looked very much into until after my appointment.

With only six short weeks until the second visit with my doctor, I didn't have much time to figure out a lot of stuff around biofeedback. Coincidentally, while I was sitting in the waiting room during my first appointment, I had the opportunity to review the post Teri Robert had just submitted on her First Migraine Specialist Visit - 10 Things to Do or Not Do. What better timing could you have than that?

Included in this article were ten things from Teri's new Migraine specialist that he would like us to do or not do on our first visit. Some of the things that her Migraine specialist mentioned were to:

• Be open to ideas that may take you off guard. I know there is good evidence that certain types of therapy can help to actually reduce Migraine. 
• Remember that getting you better requires a team effort. I’m going to give you advice, possibly prescribe medication or other treatments, but you have to do the work. If I ask you to keep calendars, stop caffeine, and take a daily preventive medicine, and you return without doing the first two, don’t blame me for the third not working.

These were actually two big reasons I needed to pursue this biofeedback option - whatever it was. After doing some preliminary searches on what it was, how many sessions would be needed or how much a session would approximately cost, I needed to find out if insurance would cover it. Because of my go around with the dietitian stuff, insurance and my benefits department a couple of weeks back, I decided I would go right to the insurance company this time to see if biofeedback was covered.

Please keep in mind that the following all transpired the same week (mostly the day after) as my specialist appointment. This meant this was a week that I was severely lacking in sleep and was not thinking as clearing as I would have liked to, but I only had six weeks to get moving on this part of the order from my doctor. When I went to the doctor, I was away from home for sixteen hours that day which is way too long for me especially since that includes four hours of driving; two hours each way.

Anyway, I called the insurance company and spoke to Insurance Agent 1 (IA1). I'd say we had a very pleasant conversation, but I think you'd see right through that as IA1 seemed to want to get off of the phone with me at every chance she could. Our conversation went something like this (not verbatim):

MP: Is biofeedback (BF) covered by my insurance policy or would it be covered by our wellness program?
IA1: No, it's not part of the wellness program. (wants to hang up)
MP: I have an Rx for it.
IA1: It would be a behavioral benefit. It's probably not covered by your plan. It's very limited. (wants to hang up)
MP: How would I know if it's covered or not.
IA1: You or your doctor could go to the IC (insurance company) website and search on it. (wants to hang up)
MP: (thinking hahaha my doctor would never!) I'm on the website now and logged into my account. ..... looking for a search bar ..... I don't see a search bar.
IA1: You have to go to the main page of the IC website to search on it. (wants to hang up)
MP: I'm on the main page now and I see the search bar. ???
IA1: Search on CPB. (wants to hang up)
MP: (didn't ask what CPB stood for - didn't really matter as we had a good dialog going at this point!) Ok, I have the results.
IA1: Just look through that and you'll find your answer. (wants to hang up)
MP: Through all 11 pages of search results?
IA1: There is another search bar on that page where you can search on BF. (finally aware that I won't hangup.) I'll log in to look at it..... There it is, if you choose the first item, you should be all set. The first entry will have the covered criterion, but it's probably not covered. (wants to hang up)
MP: If I see my condition (never told her what my condition was) in the top bullets under the section that the IC considers BF medically necessary, does that mean it's covered?
IA1: Yes, but as a behavior benefit. (wants to hang up)
MP: Is that any different than a medical benefit?
IA1: Not really, but you would have to pay your large co-payment.
MP: Ok. (hung up as I had a conference call I had to go on and I didn't trust anything IA1 was telling me from near the beginning of our conversation although I did gather a lot of useful information anyway.)

Great, now what do I do? Ultimately I did get the answer I wanted - that it was covered, but I was not confident in it at all. I did what anyone who was not happy with an answer they receive from a customer service rep does. I waited a few hours and called back again!

This time, I started my conversation a little more intelligently, or so I thought. Our conversation went something like this (again, not verbatim): 

MP: I've looked through the Clinical Policy Bulletin (that's what the CPB stood for, it was on the documentation) and it says some plans exclude coverage of BF. I want to check my plan to see if it is covered. My condition is listed under the section that the IC considers medically necessary.

IA2: (looks through plan) It says it's excluded in a separate provision.

MP: That's where I'm confused. I talked to IA1 earlier and she said it would be covered because it was in the top bulletted items and all I would need to do is pay my huge co-payment.

IA2: They probably didn't look at your plan. (that's an understatement!) It's in a separate provision where it says BF is excluded. I'm sorry if she didn't look at your policy.

MP: I'm not sure if she checked my policy. Thank you for your time. (still don't get the warm and fuzzies!)

So now I've called the IC twice and gotten two different answers. Didn't really like the answer I received from either person; they just seemed a little off, a little quick and conflicting. What should I do now? Where should I go?

I still remember what happened the last time I called my company's benefit department so I figured I would check our company portal. There was some information there. The best part was where the documentation specifically listed BF as one of the different procedures and treatments which would require pre-certification from my IC. To any logical person, this would be an indication that it is covered at least in some circumstances. With this little tidbit of information and conflicting answers, I decided I would call my benefits department before going anywhere else.

Unfortunately, I received exactly the information I expected from them even after bringing up the little bit about the pre-certification. I was basically told that they don't have any information on our plans and that I would have to call my IC. Really? Oh well, here goes nothing. In some ways, I think it was better that I was tired beyond my thinking ability and I was just reacting on remote control. I'm glad I didn't go the other way and start blowing my top.

Alrighty then, I decided I would be up front on the third call to the IC. The conversation went something like this (again, not verbatim):

MP: I don't know if my plan covers something. I've called the IC twice already and received two different answers. The documentation from the portal on my company lists it under procedures and treatments as requiring pre-certification. I have an Rx from my doctor for it. I'm looking to see if BF is covered by my plan. I'm sure you can see my confusion. (that was a mouthful!)

IA3: (reviews plan) We show it's excluded in your plan, but you say it's in your documentation. Can you hold please?

IA3: I'm still looking through your plan. Hold on a little longer please.

IA3: As I look through it, it looks like bio-energetic therapy is excluded, but I need to look further, please hold.

IA3: I'm checking with the rep that deals directly with your company, please hold.
IA3:  Are you looking at the 2012 documentation?
MP:  Yes, it says it's effective 1/1/2012.
IA3:  Please hold.

IA3: Are you sure it's the 2012 documentation? Is the documentation you're looking at a summary document or the plan booklet?

MP: The document says it's effective 1/1/2012.  It looks like it's a summary. That's the only document that was out on our portal.

IA3: Good, only the summary document is available right now; the plan booklet hasn't been printed yet. Please hold.

IA3: The information we have is that it is excluded.

MP: Can I get that in writing?

IA3: Sure, we'll email it to you.

Once again, things still didn't sit right me, but I wasn't going to argue with IA3. She's obviously a puppet in her organization like the other two were. After some conversations with different people in my company, I ended up contacting a director in our corporate benefits area. He said BF was covered and that I should probably get it pre-certified. I also found a section of exclusions in the benefit summary documentation. No where in the exclusion section did it mention BF was excluded, although it did mention that bio-energetic therapy was specifically excluded which is definitely not the same thing.

I've never had anything where I needed to get it pre-certified. So what did I end up doing again? Plus the last thing I have from the IC is that BF is not covered. I called the IC again!

I tried to be as prepared as I could be for this phone call. I had all of the documentation I could think of ready with me. The conversation went something like this (again, not verbatim):

MP: I've talked to a few IC agents and received a few different answers. Although I've been told by the IC that BF is excluded by our plan in a separate provision, the director of benefits in my corporate office said that it is covered, but I might need to get a pre-certification before I get that treatment. How would I go about getting a pre-certification?

IA4: I will need the diagnosis code and the procedure code.

Back and Forth: Gave her my Migraine diagnosis code and only had a general office visit procedural code.

IA4: I'm not showing that you are going to need a pre-certification, but you're going to have to get the BF code from the person that will be doing the BF so we can make sure it is a combination of coding that is covered.

Although IA4 seemed to be the most competent IA of them all, I still have to confess that I am not one hundred percent confident in this answer either. I've made four phone calls to the IC and received two answers that BF is covered and two that it is not covered with a little twist to each answer received. 

As you can see, I am taking very seriously trying to do what my new doctor wants me to try as Teri outlined in her post. If he feels it is beneficial, I have to give it a good try, but I know I have to be careful about not getting all stressed out around all of the BF sessions I would need either.

I'm still curious as to how this is all going to work out and I have my first biofeedback appointment this week.

Have you used biofeedback? What was your experience like? Did you find it helpful? What did you learn from it?