Win Win Donation

My company sent out an email recently to remind its employees that we have a workplace giving program where the company will even match employee contributions that are deducted from our paychecks. In the past, we’ve had only a couple of the major organizations that we could choose to have through payroll deductions.

In this email, it was mentioned that we have over sixty charities we can now choose from to have deducted from our paychecks. What this means is that there are less stipulations put on the employer match around the places we contribute to that are on this list and come directly out of our checks.

I decided I would take a look at the list to see if one of the organizations that have been added is close to my heart, or head, were on this list. I was pleasantly surprised to see the National Headache Foundation on there. Already being a member of the NHF and having attended one of their great conferences, it was a no brainer where I immediately signed up to contribute through payroll deductions.

The NHF sponsors over two hundred five research grants for Migraines and headaches. They accomplish their mission by providing educational and informational resources, supporting headache research, and advocating for the understanding of headache as a legitimate neurobiological disease. I think it’s a good place to put my donation which my company will match.

It never hurts to revisit the programs our employers offer to us to contribute to through work. The great thing about making payroll deductions is that it will keep coming out and my company will match the amount I donate dollar for dollar.

You might want to go back to your workplace giving program. It may have expanded to include additional organizations that will not only make it easier for you to donate, but it could include groups which mean a lot to you too. Take a look; it doesn’t hurt.  I'm glad I got the email from my company. 

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?

Migraine Doctor Journey

No matter how challenging a doctor visit had been, I like to look at each of my doctors along my journey as a growing and learning experience. As I started to learn more about Migraines, it got easier to move on to new doctors; until my last doctor.

When I went to my first doctor, I was still very much trained by my mom; doctors knew everything! You know, they took an oath and could cure almost anything. They would listen to everything we said and use their years’ worth of schooling and experiences to give us the best treatment.

Before I even made an appointment with my first neurologist, I tried to cram the basics I thought I was supposed to know and do before I went. I was kind of surprised that she never even looked at the diary I had kept or anything else I brought to that first appointment as I even delayed going to the doctor so I could have enough data for her to look through, but I guessed she knew what she was doing because after all, she was a doctor and had a specialty in neurology. Me, I had never even searched for anything on the internet before I realized that my lifelong headaches could really be more than just daily headaches.

I have to tell you, it took a while to get used to the fact that I could finish a prescription and not be healed! Anyway, I thought my first prescription was helping, but my doctor wanted to change it at our first six week follow up visit, so it was changed. We tried different prescriptions along the way and even retried others. On some occasions, we actually attempted combinations of medications.

At the point where I read and learned more about needing to give a medication enough time to really take effect; I was on a prescription I probably should have come off of at that time. However, I followed doctor’s orders and ended up increasing the dosage. By my next visit, I practically had to beg her to come off of the med as my tremors were so bad I had to drink with two hands. She reluctantly switched me to another medication. This time, I was put on an anti-anxiety medication.

After giving it a try, it was hard to convince her that that the anti-anxiety med did nothing for my Migraines and that they were actually feeling much worse. I knew I couldn’t keep going on with taking this medication, but I think she just wanted to get rid of me so she actually changed my prescription again.

This was the point that I started to learn that mom is not always right and I can actually fire a doctor! If you think about it, I’m paying this doctor for a service and I didn’t exactly feel I was getting the proper care I was paying for. I understand it may take a while to find the right medication to help with Migraines, but she didn’t seem to be listening to me, working with me or what was really important to me, she didn’t seem to believe things I would tell her and I felt like she was fighting against me; she was not working with me. I was going to have to find another doctor. Doctors don’t know everything, they don’t always look at what you bring with you to your appointment, and they don’t know all things medical even if you want them to or if they’re a specialist in that field.

Since I’m usually a planner, I didn’t leave right away and still tried to figure out ways to help my Migraines. I never planned on staying on medications forever and had started reading more about the elimination diet. I mentioned it during my next doctor’s visit when I was basically told it would be a waste of my time. Being the hardheaded person I am and having learned all of these doctor lessons already, I decided I would do it anyway!

The elimination diet turned out to be one of the best things I have done for my Migraines as it had decreased them dramatically. I charted everything when I started the elimination diet and it showed all of these differences very clearly and succinctly.

I brought this paperwork with me during my last visit with this doctor. She actually looked at it. She also got up and sat right next to me on my side of her desk as I went through my charts. This is when she told me that she thought my Migraines were totally because of stress which instantly explained why she didn’t want to take me off of the anti-anxiety med despite what I said. It really was the most pleasant visit I had with her and not because it was my last.

It was way past the time I should have moved on, but I learned so many things that I won’t regret the time I spent spinning my wheels either. I will never tolerate another doctor like her. They were tough lessons for hardheaded me that I really needed to learn firsthand.

It was so easy to fire the next neurologist. I only saw him once. He was so pompous and knew me much better than I knew myself. Just ask him! He knew that my trying a medication for the third time would be a charm for my Migraines. He actually told me that I ‘could keep doing what I was doing or retry that medication’. Silly me, I thought I was doing something different by going to see him. Can you believe he told me that I kept too much detail in my Migraine diary? I wish I kept that much detail now. Also during our appointment, he was so good about putting down things I had already tried to help with my Migraines, but really offered nothing new except retrying the old medication that did not help; even for this third time.

I ended up going to some odds and ends doctors for a little while including a primary care doctor. I learned a huge lesson with this PCP. He really is a good doctor who knows his own limitations. Although I try to stay out of medications, I think I talked him into trying a medication combination despite him not being comfortable with mixing meds. I knew I was beyond this doctor’s limits when I started having different side effects and could tell he didn’t know where to go with me. I ended up moving onto my last neurologist from there.

It was almost funny as my last neurologist took one look at the medication combination I was on when I came in for my first visit. She listed the possible side effects of the combination at the same time I was going through the same side effects I was feeling. I was amazed that she could look at the meds and describe all of my side effects. I stayed with this last neurologist the longest and probably would have started with her sooner if her name wasn’t so hard to spell as I had heard good things about her for a long time, but just couldn’t locate her.

She was by far the best doctor I had seen for my Migraines and helped to bring me from chronic Migraines to borderline chronic. This doctor always partnered with me and usually went along with so many of the crazy things or ideas I wanted try. She worked with me in figuring out my companies FMLA policies which was not an easy task. It turns out that my company needs specific wording from the doctor whenever the recertification paperwork is submitted.

From the very beginning, she would always look at the paperwork I brought with me during my visits, she would write out prescriptions in funny ways so it would save me hundreds of dollars with my insurance company, she kept me on one of my prescriptions that wasn’t helping with my Migraines, but was providing some relief with another genetic condition I have and you can really start to see the different ways she would work with me.

Sure, there were some things she would do that would frustrate me, but I’m sure I would frustrate her in our partnership too. We had a really good rapport, but I also didn’t want to make the mistake by pushing her to do something she was not comfortable with like I felt I did with my previous doctor. Although she never said it, sometimes I felt like she was running out of ideas near the end of our partnership and didn’t always know what to do with me. I really liked the way we worked together, but my Migraines started increasing again just before she dropped my insurance.

That was the final push for me to move on to a true Migraine specialist who is only two hours from my home. I know I am going to miss the rapport I had with her and hope I can build a portion of this type of relationship with my new doctor. My old doctor was great in giving me everything I needed to get ready for the Migraine specialist and I have recommended her for those I know who need a local Migraine doctor.

So far, I’ve had one appointment with my new doctor. He seems to want to partner with me and to bring his years of Migraine research and expertise to the table so we can make the choice together about what we feel is the best path to take for my treatment. There are more rules and regulations around a big office that I need to get used to, not that I’m ever going to like it, but I have the confidence in the doctor that we will move in the right direction and start to see an improvement soon enough.

This has been my Migraine doctor journey with some of the lessons I have learned along the way. I wish mom was right and every doctor could cure every condition. Wouldn’t that be nice?

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?