Wednesday, February 29, 2012

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…

Saturday, February 25, 2012

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 20o 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?

Friday, February 10, 2012

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?