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?

Little Efforts can go a Long Way - Please Help

The little things we do can go a long way.  We do not have to expend a lot of effort or energy to sign the petition or to get others to sign the petition urging congressional hearings to be held on the impact of headache disorders.

The AHDA has done the hard work for us! When you or someone you know signs the on-line petition, all that needs to be filled out is your First Name, Last Name, Email, Zip Code and then click Sign the Petition: 

That's it! The comments are optional - you can enter them only if you choose to make a comment. 

Some of the comments made by those with Migraines and headaches who have already signed the petition can be found on Putting our Heads Together. 

After you sign the petition, it's so easy to hand out flyers to others to help to get more signatures for the petition. Here is brief glimpse at what the flyer looks like:

If you click on the picture of the flyer, it will bring you to a full sized copy of the letter that you can print and hand out to others! 

I've approached some people at work who were more than willing to sign the petition after I mentioned it to them. They even wanted to pass the flyer along to others after hearing about the petition drive. To make it easier, I emailed them the flyer along with a link to sign the petition so they could simply pass it on to others. To my amazement, it has already gone to many other states beyond my simple reach.

Please help keep the ball rolling. After you sign the petition, please help spread the word.  Don't be afraid to ask others if they are interested in helping with this very worthy cause. I even had someone who has always refused to sign petitions who ended up helping us out.

It takes only a minute. The AHDA will deliver the signed petition directly to Congress, but we need enough signatures to do that. Together, we can make a difference and we can ensure that our lawmakers in Washington appreciate the urgent need to reduce the enormous burden of headache disorders. Thank you for your help.

 

Please sign today and pass it along.

First Specialist Appointment; Almost Confused about Diet

I finally had my appointment with my first real Migraine specialist this week. It was a different adventure than any other doctor appointment I have been to from the beginning which started with scheduling to go there in the first place. With a two hour drive to get to my new doctor, I left extremely early in the morning so I could avoid a lot of the rush hour traffic and review everything I needed so it was fresh in my mind before my scheduled time.

I've done a lot of reading and research about the Migraine specialist and headache center I went to visit; some of the materials were a little older, but most of the information gave me a good picture of what to expect for this day. I knew I would be seeing a psychologist, a nurse and my specialist. Overall, I had a really nice experience for my first visit.

I was disappointed right after walking into the office. I was anticipating a nice soothing waiting area which would be any Migraineurs dream. I couldn't believe there were the small tubular compact fluorescent bulbs all over the waiting room with no place to escape from them. I was later told that the lighting was a hospital standard. Really? Ugh.

After I got checked in, I was handed three different tests. One test had three hundred thirty-eight true/false questions to help keep me busy while in the waiting room in between the visits I had with the various people I needed to see. As I started filling out the tests, I had to put on my hat and really didn't understand why no one else in the room had sunglasses or a hat on their heads. Not that it mattered, but I didn't think I would be the only one in this office with something to help shield these lights when it was full of Migraineurs where the lighting was terrible. 

The first person I saw was the psychologist. Her office lights were awesome and what I expected of the waiting room. I even took off my hat while talking with her. She had reviewed the fourteen page packet I completed before checking into the office and she asked me some questions around my headaches to get a bigger picture than just answering paper questions could give her and she asked other questions around my life in general. I had to put my hat back on before going back to the waiting room. 

I still wasn't done with all of the tests I needed to complete when the nurse called me back. This time, I kept my hat on as the lights in this exam room were worse than the waiting room. The nurse took my vital signs and asked me a lot of clarifying questions around the packet I brought in with me. The nurse knew more about headaches and Migraines than most of the doctors I had been to prior to coming to the headache center. I also found out that I would be weighed every time I come in for a follow up visit. Yuck, I've been gaining a lot of weight lately.

I finally finished the packet of tests before my doctor called me back from the waiting area. As he greeted me, he met me with a big smile and a firm hand shake. The lights in his exam room were the worst of all of the rooms. My new doctor was busy, but very pleasant. 

We talked about a lot of different areas and he even helped force a partnership between us which is just what I wanted. One example is that he had given me two medication paths we could go down and he wouldn't make the decision of which way to go; I had to make that final choice. We ended up tripling the dose of a medication I was already taking as he said my preventatives were at way too low of a dose. He also prescribed biofeedback and an EKG for me.

By the time I went to the headache center, my Migraines had officially gone chronic. One thing I found weird about coming here is that everyone seemed to believe what I told them and I know I have a Migraine past full of large black holes. I never felt like they doubted me and they actually say I get more headaches than I will admit to having. By the time I was nearing the end of asking my doctor my questions, I actually started answering them along with him using his words. Basically, I am to do nothing until we get my Migraines under better control. He said it's hard to try to do anything if you are having head pain almost everyday. 

Of course I asked him about the elimination diet anyway. I have gone through the elimination diet and found it to be successful and very helpful for me. Honestly, I don't think I would be where I am today if I had not gone through the elimination diet before and I did it during another chronic period of time. Most of my previous doctors have had negative opinions about the elimination diet and I wanted to find out my new doctor's position on it as well. To my surprise, he shook his head no and basically said it was a waste of time. 

I have to tell you I really started to get confused about this answer. I've heard of other doctors at this center who have had their patients go on the elimination diet even though they had been on it multiple times before and had never found any foods that trigger them. I know foods affect me and that I am missing something in my diet now. 

What could he mean about not believing in the elimination diet? This really was not something I expected to hear from him and totally confused me.

All he would tell me was that I needed to get my Migraines under control and to follow a few things: take my preventatives, get the EKG, do biofeedback, get enough sleep, don't have MSG, don't get drunk, don't be hungry and exercise. He kept repeating all of this and said "first get the preventative to work and then worry about the other things." He told me, "don't worry about food. If you think it will trigger, then it will. Too much time is wasted on food." 

I thought more about being on the right preventative, the right level and food as a trigger. I know food triggers me. I know I like to be an ostrich at times where I tried not to worry about foods only to find that it ended up triggering a Migraine again. But, if I was on the right preventative and at the right level, I shouldn't trigger so easily, right? 

I think that's what he was trying to tell me which does make sense. I believe that is what a preventative is supposed to do - prevent Migraines from occurring. To make us less sensitive to our triggers. However, that still won't cure us and we still need to take our preventatives, get enough sleep, avoid MSG, don't get drunk, don't be hungry and exercise. I guess I have learned his spiel 'good enough' and can't wait until I can get my Migraines under better control.

I would still think that somewhere along the lines we would have to watch and/or find the 'super' trigger foods that we will always have to avoid like many of us have to do with MSG and alcohol. I guess I can view this like some people don't have Migraines until a couple of things will trigger them like weather or hormones or only certain foods. I would love to be able to have some of the foods I try to avoid now since my preventatives are not working right yet. I can't wait until my preventatives start working and I can start leading a more 'normal' life. I hope it also helps with my light sensitivity.

Does that make sense to you about the elimination diet? I don't think I'm ready to give up on the elimination diet as a whole, but I think I'm ready to hold off and find the preventative that works first.