Volleyball Grew Wings

I've been trying to get out  a little more this year by doing some of the things I enjoy. It haven't been able to play much this season, but I have managed to get out a few times.

Volleyball can be a tough sport for Migraineurs especially if it is indoors or even outdoors and the lights or sun are right above for us to enjoy every time we look up - which is almost every play. I've been trying to track volleyball and its effects on my Migraines. So far, the two don't seem to be getting along very well even though I wear a hat and try to take other preventative measures when I do play.

The last time I did get out was a little different; a new experience. As I was playing, sometimes the ball grew wings and had the effect of looking like it was being jet propelled to the other side of the court. OK, not quite the wings that 'normal' people would envision, but the aura kind that were on either side of the ball and trailed away as the ball kept flying.

Is it bad to say that I thought it was really cool looking?  Of course it wasn't so neat afterwards, but this is where I still get kind of confused or maybe perturbed is a better word of how I feel.

Will I ever be able to play the sports I have always enjoyed doing?  I know I should probably stop something's, but the stubborn side of me doesn't want to give Migraine another win.

I am tired of Migraine taking all of these bits and pieces of normalcy. I need to get away from the humdrum of Migraineur living. I need to get out, be with my friends and enjoy the little things life has to offer while getting a little bit of exercise.

What have you found that you can do where the beast will not follow you?  Have you been able to keep the Migraine away during and/or after an activity that it usually shows up for?  What are your secrets?  Are you stubborn too, where you don't want Migraine to take another part of your life away?

Still Trying Biofeedback for Migraines

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

New Year, New Hopes

I don't know about you, but sometimes I wonder if it's easier for us to manage head pain than when we have pain someplace else.  Since the end of last year, I've had a few other pain areas and I find myself where I would rather have the headache of a Migraine than these other discomforts.

(Stop, they're knees!)

I was so glad that last year finally made it into the history books and was looking forward to a new beginning that only the New Year could bring forth.  Last year was a very tough year with Migraines and the health of everyone in my family. We each had our own medical experiences, we met our insurance deductibles in January and our max out of pocket expenses were met during the summer.

Last year ended with a bang when I found I needed to have a root canal right after Christmas and the New Year has started off with its own lumps and bumps.

The good news for last year is that I tried Botox for my chronic Migraines and I am still hopeful that it is helping.   My doctor would like to see me wean off all of my other preventatives which would be great if I can do that as the side effects of Botox are nothing like the side effects of my other medications.

Although I don't think my second round of Botox worked as well as my first and third treatments, my doctor said that sometimes you can get an ineffective batch from the pharmacy.  Botox gives me more mental clarity than I get from my other preventatives. Does your doctor have the same goal if you are using Botox?

One week into this year and things already seem a little reminiscent of last January.  My son has already had to go to the orthopedic doctor due to a football injury to his knee. Can you believe that it happened during a flag football game?  The picture above is an xray of my son's knees. You can see how much bigger the one knee is as compared to his boney looking knee. My husband still finds himself with various new issues cropping up since his ordeal last summer and has already needed some emergency care for himself.

And now as my mouth and head conditions have started to settle down in my crazy life, I find myself in the middle of yet another health issue.  Probably the worst part is that I needed to go doctor hunting. I hate looking for a new doctor, but I was between doctors and wasn't really pursuing a new one since I had been trying to get my Migraines under control. I'll also use the poor excuse that I was just too busy with other things, but I know we still need to take care of our whole selves.

I have to say that the doctor I was able to obtain is awesome and very pleasant to work with.  After the exam, he was even able to make an appointment for me to have two tests done in another location on that same day and to see another specialist for this coming week.  It is so nice to have good doctors where I didn't need to look for these other doctors myself.

I am still hopeful that it will be nothing too serious. I've read that some of my symptoms are actually good signs plus denial is the only way I know I can deal with the situation.  Heck, that's still how I deal with my Migraines most of the time! I'll find out more in a few days and can't wait to get some relief from the increasing pain.

In many ways I find it so much easier to handle head pain than other areas even though it can make it more difficult to think and even talk clearly. Any pain can distract us from our task at hand, but I think we have already come up with our own coping skills with our Migraines since we've had years of practice.

Do you find it easier to deal with the pains in your head or with pains that you have elsewhere?

Migraine Specialist’s Lights Brutal

In the month of December, I went to my doctor’s office once a week. These visits gave me the time to think about what really aggravates me about the office and to sort things through. The first three visits were not with my regular doctor, but the last one was with him.

I had wrong expectations around my doctor’s office from the beginning. I was under the impression that his office was like dying and going to Migraineur heaven. I heard the office lighting was very soothing, there was little noise and no smell triggers to set us off. Well, two out of three …, no I can’t even say it. The lighting in my specialist’s office is horrible!

I remember the first time I approached his office for a visit. The door has the sign pictured above – “Please Do Not wear Perfume or Cologne on the day of your appointment. Scents can trigger headaches in some patients.”

My first thought was - Wow, it really must be as great of an ‘office’ as I have heard; the long commute should be worth it not only because I was finally going to a true Migraine specialist, but they seem to take care of the whole you here.

Well, the office does not have anyone wearing perfumes and it is relatively very quiet, but that’s where it stopped. It’s worth repeating, the lighting in my specialist’s office is horrible!

The waiting room is full of exposed CFLs! There is not a darker area anywhere to be found. The examination rooms are probably bright enough to lead Santa’s sleigh on the foggiest Christmas Eve on record! I can definitely understand needing that type of light when performing procedures, giving oodles of shots and things like that, but for talking or before and after those procedures, I can’t think of a single reason why my Migraine specialist’s office needs to trigger a Migraine for me every visit.

I am embarrassed to say this, but I have taken comfort by sitting in the hall and only going into the waiting room at the last minute. However, I have found that there are scents in the hallway, but the lights in the rooms are much worse than the occasional passersby who have a bad scent.

I had mentioned this ironic discrepancy to some of the nurses throughout various visits, but they always gave excuses or said that’s the way my doctor wants his office. By the time I saw my specialist, I was already seeing spots and lines and wanted to get out of his office as quickly as possible. I would go through some of the things on my list and be glad to get out of the illumination nightmare as quickly as possible.

There was too much going on in my life during my summer visits with one of those visits being the worst visit I’ve ever had with a doctor (not because of him). Before this last visit with him, I realized I needed to go into his office with several different communication plans so I would definitely talk with him and only him about the lighting.

I found the plan that was appropriate for that visit. He defused me in a kind of lousy way, but at least I brought it up to him and will again during the next visit.

His first quick remark was that the lighting sucks. Then his off the cuff sarcastic comment was basically around funding. Really? I’m funding my visits to him every time I go there plus taking a day off of work. My two hour trip has easily turned into a three hour trip both ways plus parking is not cheap in this city either. My doctor is very good and works very hard, but I also get charged for every little thing I request.

His next statement was that they may be moving their offices to a different location in the hospital. If or when that happens, the lighting will be taken care of and be much better. But what about now?

I will talk more about the lighting during my next visit. I am half contemplating bringing in boxes of incandescent bulbs for the waiting room too. Honestly, I don’t get the hypocrisy between these Migraine triggers.

How is the lighting in your Migraine Specialist’s office? Is it dreamy like it should be or nightmarish like my doctor’s office lighting? How would you handle this ludicrous situation if it were your doctor?

It’s Just a headache, You Can Play

I wonder how many D1 football teams try to sweep concussions under the turf. How many of the college football players that we see on the fields are not themselves because they were asked if they ‘really’ could play in the game even though they should not have been put in the position to make that call.

My son’s first college roommate suffered his third concussion in a year. Yes, that is in one year, not his career. His second concussion ‘didn’t even warrant’ getting checked out by a real doctor. Yes, you heard that right too, the football team didn’t take him to a doctor after his second concussion to get checked out to make sure everything was really ok with him. I can’t help but to think about other people who were not as fortunate as he was after they received a ‘small’ bump to the head and ended up not making it due to a brain hemorrhage.

After this third concussion, his coaches asked him if he would be able to play in their next scheduled game. His bell was still much rung where he was definitely not acting like himself, yet they still asked him if he was going to play. I am just very thankful that this young man had the courage to stand up to his coaches around this serious health issue.

His coaches where pushing back with comments like “it’s just a headache, you can play”. If I ever had any faith that his coaches would understand Migraine disease because of all of the big time football players who had to be taken out of professional games because of Migraines, I knew in this instant that it was best we never said anything about Migraines to them. Ugh.

I am just thankful that this young man, this college senior was adult and mature enough, unlike his coaches, to keep saying that he could not play. He was brought to the neurologist shortly after refusing to play where he was told he would need to medically retire because of the number of concussions he had in that short duration.

Why did the player with a brain injury need to make this tough personal decision to his coaches? Why weren’t the coaches looking out for his best interest? Will some of the other players on the team not want to make the right decision now for fear that they will never be able to play football ever again? Could this be portrayed as a punishment for not wanting to play when all you have is ‘just a headache’ by some of the other players?

I remember the recruiting process. I remember the promises made by the coaching staff. I do not feel like they were as upfront about things as they claimed to be with their ‘football family’ where they would never do anything to hurt them. I know the many items they did with my son with his concussion which could have put his life in jeopardy if he was not as out of it as he was and I have not finished dealing with that yet. They can’t keep being this obtuse with our children and ‘their football family’ who they promised to take care of for us.

The coaches did finally get smart about another player on their team who kept playing with a ‘perpetual concussion’. This player just wanted to keep playing, didn’t care about school and only had dreams of playing in the pros. He never reported anything, but it was quite obvious as to his condition. Everyone was turning a blind eye to what was going on to the point where even the coaches were joking about it. It is no joking matter when it comes to playing with your head like this. You would think with all of the press around concussions right now, that they would put a stop to all of this nonsense as quickly as possible. We only have one brain for life and we all must use ours.

This is where colleges need the same laws that some of the states have instituted for their high schools. Nancy Bonk wrote about it on Migraine.com about how NY State enacted a concussion management and awareness law. This is where if an athlete is even suspected of having a concussion, they have to be taken out of play and cannot return to play until they are symptom free for at least 24 hours and have signed documentation from the treating doctor. There are other good things brought on about this law, but it really should include colleges too! The colleges are not doing enough to police and protect their own players which is precisely why the law was needed for the high schools.

I am so thankful that my son’s head is on straight and that he knew classes had to come first. I am so glad his first roommate did not let the coaches bully him into playing because of ‘just a headache’. Your life is not worth risking for a game. These irresponsible coaches are the reasons we need laws to protect our children no matter how old they get.

Do you think this is common practice for all levels of college football? Do you think it still goes on in high school football? What about other sports; does this same irresponsible practice happen in other sports too?

Batty Doctor Appointment

Have you ever had one of those doctor visits? I’m not talking about an appointment where your doctor was horrible and had no clue about Migraines, I’m trying to talk about an appointment like my last doctor’s visit where I can’t blame my doctor for putting all over my chart “patient is confused”. Ugh.

There was way too much going on this summer both at home and work where I became very overwhelmed, didn’t get much sleep and had to take on many more responsibilities than I was ready to tackle. Of course as these Migraine triggers and exasperating factors were building, my first Botox treatment was wearing off.

I had things under enough control that I was able to decrease one of my other preventatives a little since I could no longer tolerate the cognitive side effects I was experiencing. My doctor appointment for my next Botox treatment was postponed and I thought I could manage everything until my next visit, but I would need to try to hold tight as best I could with everything going on at home and work.

Waiting for appointment day ended up being like a kid waiting for Christmas to come where it seemed like it would never get here. Appointment eve is when all of the fun really began!

First of all, I normally have the paperwork ready for my doctor the weekend before my visit. It didn’t work out that way this time. I even had a lot going on the night before my appointment and couldn’t even complete it then.

It was already dark outside and my doggie needed to go out. After letting her back in, I noticed there was something flying and dodging around the house. Can you believe there was a bat inside?!?!

Luckily, my son was around. He grabbed the fishing net from the garage; he used to play lacrosse. After a few gentle tries, he was finally able to catch the bat in the net. To further keep from hurting the delicate bat, he tenderly cradled the bat (this is a lacrosse term where you like rock the net back and forth to keep the ball inside of the net; he did this ever so gingerly) until he got out on the deck and was able to set the bat free. I’m so glad he was home and that he can be so agile!

After this ordeal, I was too tired to put the rest of my paperwork together and opted to finish in the morning. As I was getting ready to leave, I realized my tires needed more air. This was just one more thing in a line of items that needed to be completed last minute before leaving for my appointment.

My drive is usually like clockwork; I can count on it taking two hours to get there. This trip was no exception to how my summer was going where it took much longer to get there than it ever had. By the time I pulled into my parking spot, I was tired and fell asleep.

My luck was still on my side! I quickly realized that my headlights were still on. I’m sure you guessed it, my car battery was dead. Not only did it make funny electrical noises when I turned on the key, but it somehow managed to keep making these same noises after I turned the key off and even after I pulled the key out of the keyhole. I didn’t have any wiggle time left and had to leave to go to my doctor’s office. Can I say ugh again?

I was also a little more apprehensive with this visit because due to the appointment postponement, my FMLA had expired the day before, yes, the day before this new appointment date. I would have been all set with my original date and my FMLA. Luckily, my company has a grace period where I can still get my medical recertification form in after the expiration date, but I really don’t like operating things that closely.

The nurse’s portion of my visit was unremarkable, but every time I have gone, I seem to get a different nurse with a different routine. I am still trying to get used to that.

I will reluctantly admit that I barely remember the doctor’s portion of my visit. I basically wanted my shots and to get out of there which is totally against my character. I do remember him asking me to do something that just seemed totally absurd to me and quite frankly, it still does.

I can still see his face by my reaction and can only imagine what my face must have looked like. He even repeated himself which only reinstated the ridiculous statement to me which I still don’t understand even being in a much clearer state of mind.

Given where I was back then, I didn’t question him, but he did change his course of action after he repeated himself and I’m positive that his notes say, once again, “patient is confused”. We will have a talk about this during my next visit. He has written that statement before when I increased my medication too quickly, but I wasn’t confused this time, just tired and I couldn’t ask the question I needed to clarify his request. He’ll get a few questions next time.

This is a big reason why if you can have someone go with you to an appointment, to be an advocate for you, you should have someone else with you. Yes, I had things written down and my paperwork with me, but I wanted to get in and out of there. Again, this is totally not like me, but if I had someone with me to advocate for me, they would not have let me take this easy way out and they would have known me well enough to know why I had the dumbfounded (not confused) look on my face when the doctor gave me his silly directions.

I gave myself a pass on this last appointment, but I can assure you that during my next appointment, my doctor’s notes will not say “patient is confused”. I started writing notes and revising my plan of action right after my last visit and keep typing little notes and comments as the date comes closer. I will be ready and even if his horribly bright office lights start to confuse me, I will have a plan B for that too. I have a top notch doctor who can’t help me unless I give him the information he needs. Enough.

What was your strangest appointment like?  I'm sure there are a lot of stories out there; even leading up to your appointment. 

Did Botox come at the Right Time?

How do you know if a new preventative is working or at least helping a little bit? I tried my first round of Botox in June and I think I can answer that question.

I’ve read where it’s hard to judge how well Botox will work based on the first round as it can be so hit or miss and that hopefully subsequent rounds can be more effective; that additional rounds of Botox can build on the Botox you already had which can help it work better for those who Botox will help.  I hope so.

The toughest part about my first round was having my neck get adjusted to the Botox as my neck was super sore for about two weeks after as my other neck muscles needed to strengthen up to take over for the muscles that were affected by the Botox. I had anticipated the ‘frozen’ forehead so that didn’t come like the surprise of the sore neck muscles.

I have to say that I have been unintentionally testing Botox since I received it. At first, I felt almost forced to reduce one of my medications since I could no longer deal with its cognitive side effects.

My mind has always been something I could count on, but these side effects grew to the point where it was hard for me to trust my memory, hard to be in a constant fog, to write down everything just to forget where all the little notes were and to basically feel too disheveled. Botox helped enough this first round to allow me to manage this medication change without my Migraines getting worse.

I’ve been met with a few unavoidable triggers that could have made things much worse too. It seems like we’ve had a lot of thunderstorms this summer. I feel like the Migraines managed these storms better than they have in a while and I think better because I had the Botox which is really the only explainable difference for me.

My biggest challenge came about a month after receiving Botox and continues through today; everything started hitting the fan then. My husband has been in the ED and admitted to the hospital three times since then. Of course there is a lot of stress that comes with this, but there are lots of other triggers associated with it too. There are the lights in the ED, the hospital rooms and the different smells to contend with in this closed environment. Although we may be able to control a little corner of this space, we can’t regulate much of it.

I also found that I needed to learn and do many things at home that I didn’t need to worry about before. I had to figure out the on-line addresses where all of the bills were paid. I needed to figure out how to apply for a student loan from soup to nuts. I needed to figure out all of this new healthcare stuff I was about to be inundated with from everywhere. I needed to figure out an old tax return as we were being audited on one of our old returns.  I needed to get my younger son back to school early even though he was not cleared to play football this year as he was officially put out for the season due to the concussion he sustained during their spring season.

Not only were there other personal stuff I needed to take care of, but it was a very time intensive solid deadlines period at work too. I know it’s easy to say that home and family have to come first, but there is also that balancing act that always has to be done especially when you feel like you are continuously walking on a thin tightrope at work already. Not only that, but if I didn’t get my work-work completed, it would have adversely affected the people that report to me and how could I let that happen to them?

Can you say too much stress and too little sleep (another huge trigger) while trying to do everything except for really taking care of myself? But what was I supposed to do? What should I have done or not done? I do have to say that my boss made things as easy for me as possible which helped tremendously.  I honestly don’t know what I would have done if I had a different boss while trying to work through this time.

Anyway, back to Botox. I don’t know that I could have made it this far if I didn’t try it at the time that I did especially because it allowed me to reduce the medication that was affecting my thinking and mind clarity. Botox decreased the number of Migraines I got slightly, but I think where it made the biggest difference so far with this first round is that it allowed me to keep my productivity up more. Between being able to decrease the one medication, getting rid of the fog and not having an increase in Migraines, I have to conclude that the first round had a positive effect.

I have felt the Botox wearing off over the last few weeks and can’t wait to try the second round as I hope to have even more success. Unfortunately, my doctor needed to delay my next Botox appointment and I will continue to count the number of days until then. Each week gets a little tougher and I fear going back to the state I was in before I tried Botox when I was getting really bad with increased Migraines and was generally having a very difficult time coping with everything.

As silly as this may sound, my advice would be to get to know the things at home that you don’t normally handle or know a lot around. You don’t need to be an expert, but you should have an idea of where things are (websites, passwords, etc.), and how to take care of them – just in case. It would make it much simpler and less stressful for you if that time ever came that you needed to take on the additional responsibilities that someone else handles right now to make things easier on you.

As you can see, Botox has been super challenged this first go around. I am encouraged by the results especially the increased productivity I feel I have gotten so far while on it. I felt more like my old self and am hoping to get even better results from subsequent rounds. I still countdown the days until my next Botox treatment as I feel the Migraines squeezing tighter every day. I can’t wait for them to hopefully loosen up again and go away from the next Botox treatment.

How well did Botox work for you during your first round? Did it get better or worse with additional rounds? Did you have any extra challenges during your Botox trials?

Migraine Accommodation Pictures

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

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

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

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

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

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

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

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

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




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

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

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

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

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

How Not to Handle a Concussion

My youngest son is headed into his final year of college this fall.  However, it looks like he may have played his last football game this past spring, but he should be finding out more after additional upcoming neurologist appointments.

He was hoping to at least remember the last organized football game he ever played, but it seems like that is not going to happen. College football has spring practices and then ultimately a spring game which is like an intra-squad game with a lot of strange scoring rules.

It was during this spring season and an internal game that my son received his concussion. He was tracking to have a very good year, but if you go out for one pass and hit your head hard into the ground, that can change many unfinished plans.

There are a few things around this whole incident that were not handled correctly and really infuriate me as a mom and especially his mom.

My son was able to review the play afterward on films. After the play, he could see he was laying still for a short time on the ground. He now believes that he was probably unconscious for even a few seconds during that time yet nobody came out to check on him and even left him in for another TEN plays. He had no idea what was going on during this time.

After the plays were over and when he got to the sideline on his own, his teammates noticed he was talking and acting strangely. They directed him to go to the athletic trainer. He got lost going the twenty or so feet over to him.

When they finally hooked up, the trainer did the right thing and told the coaches LittlePuppet was through for the day. Considering he couldn’t remember getting to football that morning, making his way to the sideline after the plays, he still thought it was spring break which was three weeks earlier, he couldn’t remember most of the day before and so forth; I would say the trainer made the right call about being finished for the day. At this point, nobody really knew what happened to him on the field, but he obviously had a serious head concussion.

The next step makes my blood boil. The trainer gave my son a few ‘simple’, but very dangerous steps to follow on his own. He wanted LittlePuppet to go to his dorm, take a shower, get a bite to eat at the cafe and meet the trainer back at his office. Deep breath…

My son would have needed to cross a busy road; by himself with a new head injury. Not only that, but about a month earlier, there was a student who was hit and killed by a car on that road. Enough said.

The trainer was sending my son, with a fresh head injury, back to an empty room ALONE. Enough said.

How would LittlePuppet be able to follow the ‘simple’ multi-step instructions the trainer gave him if he could not find the trainer who was a mere twenty feet from him on the side of the field? The answer, luckily he couldn't manage any of it.

Coincidentally, I received the phone call from the trainer about my son’s head injury as I was on my way to pick him up from school. I could not comprehend everything the trainer was saying and I was still forty-five minutes away from the school. The trainer had examined my son and decided to wait until I got to the school so I could take my son to the ER to get checked out.

After I made it to the school, my son was definitely not himself. He is usually very quick mentally, but he was not remembering much from that day at all and repeating everything he said. After we got to the ER, I was questioned by them about why the school didn’t send him to the ER right away. The people in the ER were great. Although there was a waiting line to register him, they took us in right away and brought us back into one of their critical care rooms.

The ER answered all of our questions and did a CT Scan that let us know he didn’t have any ‘bleeders’ in his head which would allow him to sleep as peacefully as he could that night; we didn’t have to keep waking him up as you always hear about with concussion patients which would help him heal.

My son has been back to the neurologist a few times since then and will be returning again next week. ‘Little’Puppet said it was funny when the neuro ordered the MRI. He said he didn’t fit in the machine and needed to squish his shoulders up to try to round his body off more. They were finally able to get the pictures they needed. What do you do if you don’t fit? I guess that’s where the open MRI comes in handy?

Since LittlePuppet still experiences symptoms from this concussion he received a few months ago, he has not been cleared to return to football yet. As the regular season is approaching, it looks likely that he will not be able to play football with his team this fall. This is also a little tough for him because he came into football camp last summer with a severly sprained ankle while getting in shape for camp and missed most of last season.   He is coming to terms with it, but he knows he will need his head and thinking capabilities for life. He knows that is the most important thing he really has to worry about.

One more thing about the school and his concussion which I have not mentioned before that is very important and probably pertains to his concussion or at least contributed to the degree of concussion he received. My son had a defective helmet.

With football and especially as the programs get more advanced where the players are bigger and stronger, the equipment must be top notch.  Some inside pads of football helmets are filled with air to make sure they fit each player snug. However, my son’s helmet needed to be topped off frequently – something I didn’t learn about until after. You can’t have defective equipment especially when it comes to your helmet and protecting your head!

I’d love to know what was discussed at this years American Headache Society Meeting about sports helmet design improvements which just concluded in June. Our children need the best equipment and helmets to give them the most protection.

There were too many errors made in the handling of my son after his concussion. Although he is still experiencing symptoms, I am glad things are not worse because there could have been terrible consequences to some of the actions that were asked to be taken.

LED Testing

I feel like I keep attempting different things to try to help with my Migraines. The last thing that I tried was to finally test the LED bulbs.

I’ve been following LED bulbs since about 2008 when I first found out about them and even signed a petition then when the government decided to mandate the phasing out of incandescent light bulbs. I already knew that I did not react well to CFL bulbs which were the only viable alternative.

LEDs have been cost prohibitive for years. I have been watching the prices drop. Week after week while shopping at the supermarket, I would check the supermarket shelves to see if they stocked them there yet.

Two weeks ago they were finally in the supermarket plus they were marked way down if you used your super shopping card. It put it into a reasonable price range to finally try an LED bulb. I couldn’t wait to get home, rip the bulb out of the package and put the bulb into a socket.

I couldn’t believe it! In less than fifteen minutes, my whole face went numb and I was very nauseous. I usually just have half of my face go numb after being exposed to the CFL bulbs. I wasn’t expecting to have any reaction as LED bulbs aren’t supposed to have any type of a flicker. I don't know why the reaction.

I guess it's time to go back to the drawing board with light bulbs. In the meantime, I will continue to make plans with the old incandescent bulbs.

Have you tried the LED bulbs? How did you make out with them? Did you have any reactions?

Migraine Awareness Month #11: Say What

Migraine Awareness Month #11: "Say What?!" What's the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances?


There are so many different comments we’ve all heard, but I’ve decided to go the doctor route on this one. It was this doctor’s way of trying to push me into retrying a medication for the THIRD time - on my first and last visit with him.

Instead of saying anything of any intelligence to me after hearing my hesitation about retrying a medication, the doctor said “You can keep doing what you're doing or retry this medication.” Say what?!

First of all, if I wanted to “keep doing what I was doing,” I would have stayed with my last incompetent doctor and not sought him out.

Second of all, if the medication didn’t work the first two times at the exact same dosage, why would it work now with no other changes?

Third of all, at that point in my Migraine treatment, I had only tried a couple of different medications; not even enough to count on one full hand. Why in pray tell would he be going back to a medication that has already failed not once, but twice before.

Really?!



National Migraine Awareness Month is initiated by National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Approval Process

It’s time for me to jump onto the band wagon. This has meant I’ve needed to switch my reading around a little bit. Although I still need to catch up on my blog readings and want to finish up on the book everyone is talking about (the book that is turning everyone different shades of red), I’ve had to start doing all of my serious researching on Botox.

I have been approved and should receive my first treatments during my next doctor visit in about a week. I like to know exactly what to expect so I’m trying to read up on patient experiences, what to expect in the office, what to expect after leaving the office and even read through some of the interviews my doctor did while he was conducting research on Botox.

My doctor had mentioned Botox during my first two appointments, but I kind of dismissed it as I was not ready to try it yet.  However, before I went back to him for my third appointment, I knew there would be no choices and this would be the route we would be pursuing. I really was not in good shape during that visit as my speech was horrible because of the latest medication increases which made me even more frustrated than normal.

As he started filling out the Botox application form, I was getting out the medications I had tried and failed at in each of the five classes my insurance company listed even though they only required me failing three classes of medications. I guess it was team work by my doctor and me without us even talking about it.

I have to say that I think our Migraine community is awesome! I was hesitant about starting Botox with this office for a number of reasons. With Botox seeming like the ‘drug of choice’, I had heard that the girl in my doctor’s office was very overwhelmed and difficult to get in touch with even though they ask us to touch basis with her. I had also heard that she NEVER gets back to you.

My reluctance to go with Botox was because I would not want to depend on a preventative if it may not be available when I needed it and because it can wear off before the next set of injections. I know what it’s like when I have titrated off of a medication that doesn’t work all that well and it’s not that much fun.

Before I went to that last doctor’s appointment, I reached out to someone in our Migraine community who also goes to my headache center and has gone through the Botox process. She gave me some wonderful helpful hints! She made me feel more comfortable about moving forward with Botox as I knew that would be the route I would be taking after my third appointment with my doctor.

First of all, I have to say, I respect when someone tells me like it is. My Migraine friend came out and told me that the process is as bad as it sounds with ‘Botox girl’ at our headache center. But she also reassured me that it was well worth it for her and that I should go through all of it to see if it works for me too. She said the first authorization would be the hardest and once insurance approves it once, then it shouldn’t be much of a problem. She advised me to call my insurance company to set up a case with them; to take control myself.

I know we both work hard at our normal jobs. We shouldn’t need to follow up or do a big part of Botox girl’s job. It should be like any other prescription medication we have, but it is a little different and we do want to make sure that everything goes through especially since we usually hear that insurance companies can hassle us a little more about getting this approval even though my doctor’s office typically sends through people for approval that over qualify for Botox.

When I called my insurance company, they were excellent! They set up the case and even told me they had my doctor’s phone number, fax number and everything else if they needed anything. They took my basic information and I tried to keep giving them more information – the same info I gave my doctor at the appointment, but they kept assuring me that they needed and would get that from the doctor’s office. I thought I would try to give them as much information as I could to make it easier on everyone.

I called Botox girl and left a voicemail with the case number and all of my information. After a very respectable amount of time, I did the same again. I have never heard back from Botox girl. I was warned by my Migraine friend to NEVER expect a call back from Botox girl. Unfortunately, my friend did not let me down. I have to tell you, my boss would not be happy with me if I gave this type of service to our clients.

I felt kind of silly, but I ended up calling my insurance company back to see if Botox girl had ever called in and where everything stood with my case number. Quite frankly, I felt like I was getting desperate enough that I was ready to postpone my doctor’s appointment. I know I am better off than I was medication wise before my last appointment even though my Migraines have not improved, but I did not want to waste my doctor’s or my time if my next option wasn’t going to be available.

Apparently Botox girl did get the Botox ball rolling, but she should call to give patients an update. If I could not get good information from my insurance company and if it was too late for approval (they require ten days), I would have changed my appointment and raised a bigger stink than I will now during my appointment.

My Migraine friend has since given me a few more helpful hints. She let me know that her first round did nothing for her Migraines, but her second round was like magic. She also mentioned that one of her side effects was that she has started to get carded again when she buys a beer at the bar. I’m not too concerned about that side effect especially considering my oldest son is only ten years younger than she is, but it would be nice to reduce my Migraines as I feel like I’m at my wits end right now and don’t know how much longer my boss can be as super as he has been.

I have a week to do more research (I’m a real detail person) on Botox and really prepare for my doctor’s visit. Maybe I’ll also find some time to continue reading the book that everyone’s been talking about and of course I have a lot of work to still catch up on.

Do you have any helpful hints or stories about Botox that will help me get ready?

Disruptive Vacation

(Picture taken through bus window)

It had been a long time since I had been on a real vacation and I was looking forward to the well needed break and rest. I was also anticipating some type of interruption, slow down or relief to my chronic Migraines.

Have you ever regretted going on vacation if the Migraine monster followed along?

I guess I’m more disappointed that I couldn’t get more relief and it probably didn’t help the others with me enjoy their time as much as they should have too. I was really expecting the Migraines to not be as bad as ‘normal’ and in some ways I think they were probably a little more over the top than usual. I had a Migraine every day and I know it didn’t help that hormones were a factor that got added into the equation earlier than they were supposed to.

Another issue I had is that I’ve enjoyed some plane trips where the plane ride actually aborted worsening Migraines. Not this trip. My Migraine kept getting worse on the plane and although I had already hit medication limits, I really needed to do something about the Migraine and was glad it was a red eye flight home.

(Taken from helicopter, see blade?)

I just finished posting pictures to facebook. One of my very good friends posted a question about if I had any Migraines while I was there. I almost feel like I not only ruined some time for those I was with, but now I am disappointing some of my good friends at home as they were pulling for me too. Stupid Migraine attacks. We need to stop making these attacks so explosive and disruptive!

I will take this as my opportunity to explain to my facebook friends and family that we can’t control Migraine disease despite all of the precautions we can take – don’t get hungry, wear good sunglasses, wear my hats, stay hydrated, etc.  Migraine attacks can still occur in a beautiful location while surrounded by loving family members.

This is another reason we need more research into Migraine disease which could result in better treatment for all of us. We still need more signatures for the Alliance for Headache Disorders Advocacy's petition urging Congress to hold hearings on the impact of Migraine and other headache disorders.

"Conviction is worthless unless it is converted into conduct." ~Thomas Carlyle

If you’ve already signed the petition, please spread the word. Congress must better understand us and how many of us, our families and friends are willing to stand up for ourselves before we will see any type of increased federal funding. We need to help us.

I don’t totally regret going on my trip as I still participated in as many activities as I could and I hope I wasn’t as big of a lump as I felt like I was for mom, aunt and sister. I do wish it could have been better – like no monsters should have come along…

How did you feel when travelling and vacationing when you got hit with a Migraine attack? Did you feel like maybe you shouldn’t have gone on your trip?  How did you cope?

Fried Migraine Brain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The Putting Our Head Together Poetry Contest entry has been extended through May 13th!  Please don't forget to enter! 


We still need to keep getting signatures if we want Congress to hear us!  If you haven't signed it, please sign the petition.  If you have signed it, please pass the link on so we can get more signatures.  Thank you!

Football and Concussions

Despite all of the reading I do, I knew I needed help and guidance this morning. As I was driving down the highway, I picked up the phone to get the support I so desperately needed.

My confusion started when I received a phone call on my way to pick up my son from school for Easter weekend this morning. My son called me and then immediately asked me to hold on. He didn’t come back on the phone, but the trainer from his football team did instead.

The trainer started talking nonsense. I wanted to cut to the chase so I jumped right in and asked if my son was hurt. Why else would the trainer be on the phone with me? He said he suspected a concussion. A lot of things raced through my mind and then my mind went blank. Crap!

The trainer was happy I was already on my way to the school and said he would give me more details when I got to the school.

My son has been playing football for a long time and has been very blessed to have been kept relatively safe through all of those years. I also thought about how we were able to get his Migraines under excellent control after we discovered he had them two years ago yet my sister Pam is still struggling to get her head pain controlled after she had a Traumatic Brain Injury (TBI) last year. I don’t want him to start going through this regular head battle.

After hanging up with the trainer, I needed to put my head back on straight so I called Pam. Luckily she was there and answered her phone.

Before Pam had much of a chance to say anything, I jumped right in and said, "I know I should know what to do, what to say and what to ask, but my mind is completely blank. I need your help."

Not only has Pam suffered TBI, but she is also a nurse, an EMT and I have been sending her links for a while to some great articles on TBI and now it was my turn to lean on her. It was nice that she was able to calm me down enough to start thinking rationally again.

Here are some of the great TBI articles that I need to familiarize me with again and to hopefully look forward to future treatments for TBI:

Migraines, TBI & Short Term Memory Strategies by Diana Lee - For patients whose migraines are the result of a traumatic brain injury (TBI), memory loss is a huge, frustrating obstacle. Particularly short term memory issues. Certain medications can cause memory problems, too.

Traumatic Brain Injury & Migraine by Nancy Bonk - Every year close to 1.7 million Americans suffer a traumatic brain injury (TBI). Most people will recover after a few days of rest and return to their normal activities without any residual effects. Others will have a long, arduous road to recovery due to the extent of their trauma and may have lingering problems for years to come.

Migraines and Brain Injury Awareness Month by Teri Robert - Although a traumatic brain injury (TBI) can't cause us to have Migraine disease, it can cause Migraineurs to be more susceptible to their triggers. Brain injuries can also cause headaches that are considered Migraine-like and may even respond to Migraine-specific medications....

Traumatic Brain Injury: The 2012 Congressional Hearing by Christopher Regal - On March 19, the House Energy and Commerce Committee, Subcommittee on Health held a hearing with regards to Traumatic Brain Injury (TBI), designed to review the efforts for prevention and treatment of TBI (Committee on Energy and Commerce, 2012).

After I got to the campus, I met up with the trainer and my son. The trainer said nobody saw my son get injured. That he walked to the sideline where he overheard him make a comment to another player about not remembering how he got there. The trainer started questioning him and immediately told the coaches he was done for the day.

My son did not have any short term memory. He could not remember much from today or even the day before. He had problems following simple directions since he would forget them shortly after they were given to him. This is all scary stuff for any kid, but he has also been on the Dean’s list the last few semesters too.

After the trainer filled me in on everything, we went to the ED. I have to say, they were really great there. They brought us back immediately where he was seen by a doctor pretty quickly. They ordered a CT Scan to make sure there was no bleeding. Luck was finally on our side and the CT Scan was clean. He was not himself all the way to the hospital and started retaining some of his memory as we were at the hospital.

We went back to see the trainer after the hospital. He filled us in on what happened as they pulled the films of the plays since nobody knew what really happened to my son as he walked off of the field by himself and no one saw anything.

The trainer said he actually played ten more plays after he injured his head. How scary is that? He went out for an overthrown pass. He was hit in his side where his head was drilled into the ground and bounced up, but he also appeared to get up right away.

For the next ten plays, he was right on target with what he needed to do for some plays, but was floundering for others. I think it’s amazing and a miracle that he didn’t hit his head again. I can’t imagine what he would have been like if he had. I also can’t imagine that no teammates would not have noticed him in the condition he was in.

I am very thankful for our early Easter miracle and pray he keeps going in the right direction. I am also glad that he will be home for the next few nights where I can keep a close eye on him.  Do you get forgetful when something affects your child like this out of the blue?

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?