I've been in one of those retrospective moods of late. Digging into the past and thinking of my parents and how I miss them so since they passed away. Wishing I had spent more time with them after I got married and moved out. I lived only 25 minutes away from them and drove there when I could, but I called often but looking back it just doesn't seem it was enough.
I started with a new family physician and you know how it is, you have to go through the whole family questionnaire of immediate family health info. I did this with all my neurologist but this time it just put a wrench of pain in my heart going through it anew again. My dad had migraines when he was a young boy but grew out of them when he was a teenager. He was born in 1928 so it would have been in the late 30's or early 40's when his migraines stopped. Back then they called them sick headaches. He passed away late April 2005 just shortly after turning 77.
My mother started getting migraines before I left home. I'm trying to do the math here as I'm so darn forgetful. She was born mid-Sept 1933. She was 29 when I was born. Dad was 34 when I was born. No way I can figure out the ages of my 2 brothers. My sister is 9 yrs younger than myself. She was around to witness the major part of her migraine outburst while I just saw the beginning. But she was 49 when I left and got married at the age of 20. She was in the pre-menopause stage at that time. She was not put on any type of hormones, but to be honest my mother was the worse patient in the world. My father had to take her practically kicking and screaming to the doctors office to get her blood pressure medication. She had very high borderline uncontrollable blood pressure. After I moved out, I cannot remember the year, but it was before my daughter was conceived, I got a call that the ambulance was called to my parents house (I was still working part time volunteer for that ambulance but was off duty that day) and I went rushing and broke speed limits to get there as the ambulance crew was loading her in the back of the unit. I was too shaken to be in the back w/her so I rode up front with the driver Chuck that day. The crew chief that was in charge almost got the crap smacked out of him for his comment made on the sly. My mom didn't hear it but I sure did and Chuck had to hold me back. My mom was morbidly overweight and she was very, very self conscious about it. And I was very overprotective of her. Dale almost got knocked to the ground and almost ate dirt before the unit had a chance to put rubber to Hwy 12 on the way to Michigan City. I was scared, shaken but also livid. His lack of professionalism that day and lack of empathy almost lost him some teeth. He was called out for it later.
But anyway, moving along, the only treatment they had then and this was in 1982 onwards was Darvocet was what they gave her for her migraines. And it did not touch her migraine pain. My sister said she would go in the dark room for a day or two and just wither in pain with cold wet washcloths. And my mother and I would get into some pretty intense arguments because I would see her eat foods that I knew even back then she was not allowed to have that were migraine triggers, but she would refuse to give them up! She said she could not give up her favorite foods and deprive herself. I would get sooooo mad at her. We'd have some arguments. I finally had to give up because she would not relent. I was saddened. I cannot remember what year my sister moved out and I have asked my sister several times about more information on my mom's migraines but she has declined to give me any of the information I seek. She has ignored my request. So I cannot give anymore details to my doctors if they stopped after she went through her menopause of if they continued. My sister holds that information hostage for some reason. It's not like she was close to mom and is protecting this for mom's sake. She never once went to visit mom when she was in the nursing home and when mom passed in mid May 2003 she would not stay in the funeral home when the visitation took place. So it's not like she cared or anything like that. So I give up on what her reasoning is.
My migraines started after the birth of my daughter in 1985, so that would be in 1989 when I had my 1st one. It scared me because I thought I was having a stroke. I remember calling my mom and dad while lying on my bathroom floor crying and puking in the toilet. My dad came rushing over with Darvocet and Megan was cradling my head. My bady daughter was cradling my head and I was puking. Talking about role reversal. Then I got an appointment to see my regualar doctor who did nothing because they were random at first without any regularity. Then they picked up in frequency and then I did a food diary after I eliminated the obvious food triggers that I knew set off my mom's. Then I did the food elimination diet and when I added those foods back in after a while I found out I had more triggers so I added those to the list of what to avoid. At that time in the mid to late 90's I was going to a chiropractor in Bridgman who was into food intolerance's and she gave me this kit that you did for a month. So on a regular basis you did this in the AM at the same time every few days a saliva test and it tested for food intolerance's and I found out that dairy, soy and eggs I should avoid. So I added those to my growing list. And the migraines were still growing in frequency so I went yet to another neurologist. They did a CT scan and blood work. No abnormalities and my guinea pig status started taking on a whole new status. I had a long list of food and beverages to avoid and medications I was now taking that changed every other month or so and a chiropractor that worked me over and paid attention to my pressure points and I saw a nice little petite woman that did acupuncture-that felt calm and relaxing but the insurance didn't cover it and after a few sessions it did nothing for the migraines and I could not afford to keep it up so I had to stop going. As with the Chiropractor too. I loved this one but she was out of network at it was all out of pocket and it was getting too expensive.
My sister had started getting migraines in her mid to late teens but they stopped in her mid 20's I believe. She won't share much of that information with me either. I do catch blips on Facebook where she will get some on occasion now and then where she will go to the ER and hear her nightmare stories. A couple of months ago she got a spinal tap and was bed ridden for a couple of days w/that head pain that did not go away. So they started up again off and on. She doesn't do any food elimination as far as I can tell, but I could be wrong.
In 2006 I was getting really bad hormonal migraines and bad periods so they put me on non-stop low hormonal birth control to stop my periods becuase I'd get 2 if not 3 periods a month and a really horrible migriane prior to, during and after the beginning of each period. That helped that situation but not the other migraines. So I'm still on that regimine. They tried to take me off of it but all hell broke loose again and they put me right back on it again.
By 2008 the migraines were not getting more frequent, but they were getting so intense I was hurling left and right and the aura's were scaring the crap out of me and I suffered an occasional blackout, I'd get dizzy and fall down. That is when I was referred to the Diamond Headache Clinic in Chicago Illinois. The Neurologist in South Bend was not being helpful at this point. So I told my husband I'd try it if he drove me to and from because there is no way I'd be up to doing it myself. So I was still working at that time. We both had to take a whole day off work as it was a whole day affair, navigating the traffic on I-94 to Lakeshore Drive to downtown Chicago to where they were located then on the top floor of a children's hospital. Of course you had to go up in an elevator. I detest elevators and this one was small and enclosed and I'm claustrophobic and when it gets to the top by the time I start to hyperventilate it jerks you up then down and just when you think your trapped or it will drop to the ground the doors open, Thank GOD!!!! And we always got there early to be on time and they would always be late an behind schedule and we'd have to wait, and wait, and wait. I would have to wait sometimes 2, 3, 4 hours to be seen when I'd be early to be on time. And being a migrainer when your schedule is thrown off like that and throw the stress of being in that situation with the elevator, finding a spot in an over crowded parking garage, dealing with the traffic and going past a scheduled meal time-it just throws you into a tail spin. A few times on the way home I'd get car sick. Yes, a 40 some year old woman getting car sick. Embarrassing. After almost a year I had to say enough. All they were doing was the same the Neurologist in Mishawaka was doing-experimenting trying different meds on me every 2 months. I had to endure the traffic, elevator, long waits when I was on time, car sickness and to what avail? I went back to the family doctor and he said he could take over from what they were doing. They only thing extra Diamond Clinic did was order an MRI that they had the South Bend Clinic in Indiana do for me. All they found was a sinus cyst. They said at that point all they would do is watch it. Well that was in 2008 and nothing has been done to watch it and as far as I know it's still there. I don't know what a sinus cyst can do or what can be done about it of if left alone what its liable to do. No one seems to want to answer that question. But there it is, still there I think.
So in 2010 the migraines got totally out of control. My then family doctor did all he could do and he said I was the worse case he had ever seen and had me on temporary disability and said it would be in my best interest to not work. He said he doubted very much I'd be able to work at all. He then referred me to a neurologist and got me back into the one I was seeing up until my referral to Diamond Clinic. Well, Dr. A-hole-io I will call him must have had a major chip on his shoulder that I dare be referred to a specialist other than him because he was a real creep and a jerk to me from that point until I got my therapist to refer me to another neurologist. My then family Doctor when I asked said he knew of no other neurologists that dealt with migraines when I called so then is when I decided I would look for another family MD too, because he told me in front of my patient advocate that I should leave my job because I was too sick to work, but when he was contacted by Social Security when I filed for disability he said I was OK to work?! My patient advocate wrote a letter stating her observance of the conversation to my appeals attorney and it went before the appeals judge and that was part of the factor in which I won my disability appeals hearing. That and the fact my new neurologist documentation and my therapist showed up to testify on my behalf.
But I like my new neurologist. He is very aggressive and is throwing all kinds of medication combinations at me he can think of as preventives and abortive. And if I find anything online and I take it to him he is not offended like Dr. A-hole-io and he will listen and we will discuss any pros/cons and if it's an option for now or later.
My new MD she's located just down the road from my house actually, in New Carlisle Indiana, just under 15 min. She is really nice. She listens to you and puts you at ease. She takes what you have to tell her and if she has any suggestions she tells you and if she agrees with you or if you can compromise but shes a really nice doctor.
So things doctor wise have come together. Now to just get the medication streamlined. But that too in time will come together and if not come what may. Just need to take a deep breathe, stay focused and take one day at a time. Just focus on the positive and block out the negative and if the negative creeps in then I clean house and toss it out with the garbage and go back and refocus. To pray and recenter. Then to use the tools my doctors and therapists have given me
I'm in the process right now of when I can try to focus I'm trying to read this book
"Sick and Tired of Feeling Sick and Tired Living With Invisible Chronic Illness" by Paul J. Donoghue, PH.D and Mary E. Siegel, PH.D
Then next on my list I have "Coping with Chronic Illness" (Neck and Back Pain, Migraines, Arthritis, Fibromyalgia, Chronic Fatigue, and Other Invisible Illnesses) by H. Norman Wright and Lynn Ellis
And finally "All In My Head " an Epic Quest to Cure and Unrelenting, Totally Unreasonable, and only Slightly Enlightening Headache" by Paula Kamen
With the way my eyes are and sometimes it's hard to focus I can read a couple pages of a book then I have to put it down and if I cannot come back to it later that day then sometimes it's a few days later. And I use to read a lot and I loved to read. I have a lot of books. I love the feel of books. My husband and daughter last year got me a tablet when all I asked for was a Kindle. You can change the background to black and make the letters a soft white and change the font size so they don't glare at you. A book the pages are always white and the letters are small and black. It makes it hard to focus and concentrate and after a while, when I suffer from migraines and the glare of the white pages gets to me after a while the words are blurry and get to me and my eyes hurt and sometimes it triggers me. I love the tablet and I got the Kindle reading app on it and you can adjust the background color and the font color and shape and it has an electronic bookmark so you don't lose your spot, but it's not the same as holding a real book. You just can't replace the look, feel and smell of a real book. I guess you can have the best of both worlds but all my life I've just loved books. I guess if you travel the tablet would be fine but then you have to worry about charging it and can you use it if your on a plane? Not that I care to fly-hate it and would really dread what it would do to my head since the pressure changes on the ground play heck with it.
As it is it's taking me all day to do this because I've had to step away and come back several times because this computer screen is really getting to me. So I will sign off for now because I'm seeing 2 of everything.
Until next time I wish you all good health, good spirit, be well, be happy and be safe. Praying that God blesses you with all this and more. Take care and God Bless. Until next time, sincerely, Julie
11-14-12 Update. I just found my 2 of 3 siblings actual birth certificates. My oldest brother was born 2-4-51 so that makes him 61. My 2nd brother was born 4 29-55 so that makes him 57. I found my sisters' B-Day on Face Book and that is 6-24-71 so that makes her 41 and I know mine by heart as 8-14-62 and the big 50. Only a number never phased me a bit. I didn't know my 2nd brother was getting that close to 60. Oh well, as I've said before I have that part-timers thing going with my brain.