Weary, Depressed and Stressed over Chronic Migraine and it's Stigma
Last updated: June 2013
I am very passionate about. Passionate because it is a major part of my life-Chronic Migraine Disease, Depression, Panic Attacks PTSD, OCD, IBS, SAD, Fibromyalgia and CFS. I write about subjects I know because I suffer from them and I have done exhaustive research to learn as much as I can to be a better educated patient and in the interim in return I've had to educate some of my doctors along the way as they are not as well-versed in Daily Intractable Migraines. I was just recently given the official diagnosis of FM/CFS in the winter of 2012 so I am still in the process of trying to gather information and learning materials to be better educated on that. But an educated patient is a better patient. It teaches you how to manage your disease, how to manage the doctors that care for your disease, and along the way you pick up tips, tricks and ideas from fellow sufferers and some I just picked up on my own. I am the sole writer for this blog and I admitted from the beginning in the fall of 2012 that I am a novice to this media and I am still learning-a work in progress. I try to use the spell checker that is available in this blog editor for WordPress but it's not as efficient as the one I'm use to in Microsoft Word. So if my spelling seems off at times I try my best, but suffering from daily Migraines where the lowest pain level might reach a 6 the Migraine Fog and the Fibro Fog kick in and I'm not 100%, but I feel it's still important to communicate and to share what I know and what I learn, as we chronic pain sufferers rely so much on media for their information and interaction with fellow sufferers alike. So bear with me as I learn to blog better and hopefully write better content.
I was born in a very small town in Missouri called Ste. Genevieve. Most of my family originates from Missouri. Due to my dads job we relocated several times and I have been to about 4 different schools when we arrived in New Buffalo Michigan in 1974 for good-our last move and I was currently in 5th grade at the time. I did have a long bout of stomach ailments for that year due to the yet again unsettling move. It seemed that as soon as we got settled into a place and made friends it was time to move yet again. So it was nice to hope that this would be the last move. We were a close-knit family and we were not raised in any particular religious preferences, but we were taught the ethics and morals. We were taught right from wrong and got a paddling when we did wrong to reinforce it so we would not do it again. But it was done in love. Every night we got hugs and told we loved each other and when we went to school, off to work or moved out of the house it was likewise. When we became adults and lived on our own and came over for visits there was always hugs and the I Love you's said. Never take those moments for granted. So we were raised very strict. I was not allowed to date until I was 16. As was my younger sister. I'm the 3rd in line of 4 children my parents had. My mom did have a stillborn before she had me but refused to talk about it. I have 2 older brothers. The family relationship is strained for various odd reasons. It became more apparent when my mom passed in May 2003 from a sudden stroke at the age of 69. She was diagnosed in 2002 with stage 4 colón cancer that spread to the lymph nodes. She had Alzheimer's and CHF. The stroke was an end result of the colon cancer. My dad was diagnosed with type 2 Diabetes in 2001 after almost losing his leg to cellulitis. He had high blood pressure and high cholesterol. He had a sudden hemorrhagic stroke in April 2005 just shortly after turning 77. Watching him in the nursing home struggle for breath as he held on for 3 weeks until he passed was agonizing.
I turned 50 years old late last summer of 2012. I have suffered from infrequent Migraines for over 25 years but on May of 2010 they became daily Intractable Migraines-that was how it was diagnosed at that time. My panic attacks also became unmanageable through will power alone as I was not officially being treated for them at that point. I had IBS I was suffering from since about 2000 and I learned on my own to control it through restricting or refraining totally from dairy and soy based products. At that time there was not a lot of education, or rather should I say, there were not educated doctors that would tell you how to control IBS on your own. They were just ready to get out their prescription pads and write you out a quick fix instead of digging into the problem as most doctors do. I had suffered from an arrhythmia problem called SVT around about that time as well and it was mostly controlled by medications as I was too leery to have the than older version of the Catheter Ablation they used to go into all 4 of your major arteries and insert a 5th electrode into your heart to kill part of your AV Node natural pacemaker. So I struggled with that for years trying new medications as the current ones my body adjusted to and would not longer work. I'd have spells of uncontrollable heart racing that would have to run its course until it decided to stop. When I started having problems with this the doctors at first said "your drinking too much caffeine, cut down". So I would and problem persisted. Then I was told it was exercise induced so I cut back on my strenuous aerobic exercise and that didn't curtail it either. Then they decided to try one of those 48hr Holster Monitors to monitor heart rate and function. Wouldn't you know it of course it wouldn't act up in that 48hr time frame. Then they started hinting I was a hypochondriac. I had to argue with them and reason with them I was having a real problem until they finally decided to put me on a 30 day monitor. So here I'm going about my regular routine and I didn't change anything more and I was getting distressed because it wasn't occurring. I was beginning to question even my sanity when the month was almost over until on day 28, remind you it was 28 days until I got a flare up. And it's a flare up I will not soon forget. It started at work (I was working in an elementary school at that time as a Head Cook) and the monitor kicked in. I was trying to slow down my pace at work hoping it would go away like it usually did. Well, it didn't. I was starting to get really weak and jelly legged as the adrenaline was rushing through my veins. I eventually had to call the doctor who dialed into my monitor and said I needed to go to the ER for intervention as it was not going to stop. They said I had an arrhythmia that will not correct itself. I had to call my husband to come get me as I was not able to drive and called my boss to tell her what was going on.
In the ER they hooked me up to IV"s and started pushing meds into me that I cannot remember to try to halt the arrhythmia. It was not helping and I was panicking and the nurses as well as the ER doctor attending me were getting quite worried kept trying to keep me calm. It was into about 8hrs of non-stop heart racing and I was weak, clammy and getting nauseated. I cannot remember what last med they used but they were getting ready to get the shock paddles out to shock me back into rhythm. I remember praying so hard for the medicine to work as I didn't really want to get electrocuted into a normal sinus rhythm, or worse. Thank God the medicine worked. They kept me there for a while to make sure I was under control before they'd release me. Then I was referred to a Cardiologist that I didn't like at all. His bedside manner was horrendous and I fired him after 2-3 visits and told my GP to refer me to a better one. I got a nice, elderly, very patient gentleman who came with a good referral by my husbands then boss. I stayed with him until he retired and my GP took over my medicine care. I would get regular stress tests and EKG's once or twice a year. He informed me about that procedure but I was still to chicken. I didn't want my 4 arteries compromised and all the listed complications that they listed that could happen w/the procedure. In 2008-2009 they arrhythmia started getting out of control and occurring at more frequent intervals and medication was no longer working. I had actually ran out of medication options by that chance. I was referred to an amazing Cardiologist in Memorial Hospital. He's the head of the Cardiovascular Institute and I immediately like and trusted him. He told me I basically had no other options but the Ablation procedure. They had perfected it by then and would only go into 1 artery instead of all 4. So I agreed and had the surgery as outpatient on Sept 11 2009. Problem corrected so far-knock on wood.
All this time I was still having the migraines, chronic upper back, shoulder and neck pain. The shoulder pain didn't help when I had taken a fall down our narrow and steep basement steps and put a slight tear in my rotor cuff. I had PT and Cortisone shots through South Bend orthopedic and it did help for a while. When I re-injured my shoulder at work they repeated the Cortisone shots but to no avail. I would not have surgery to correct it because A. it was too small of a tear and B. a close friend of ours had the surgery, was laid up for 6 months and had just as much trouble with his shoulder afterwards than he did before. So nix that option. I said "no way Jose". I also had infrequent bouts of panic attacks but they were not uncontrollable at that time.
Up until 2010 I had several alternative treatments to try to help my Migraines and these were options I started back in the late 80's and they were not doctor recommended or approved-at that time GP's thought alternative treatments were bogus and not credible and these were the treatments I found online as I was constantly searching to find my own answers as I was not getting them from my doctors. But I have tried:
6.Herbal Supplements (discovered I cannot take Feverfew due to a reaction)
8.Binaural Beats Meditation Music
10.Progressive Relaxation Therapy
12.Elimination Diet-I did this on my own to find food triggers and I'm aghast it was not suggested to me prior
Then when I went to Diamond Headache Clinic in Chicago in 2006 through 2007 I tried the following therapies, some were at their recommendation and others I still found on my own:
4.Specific Stretching Exercises
5.Elimination Diet-again to pinpoint more food triggers
7.Low Tyramine Diet
This in addition to the medications they experimented on me. After a year of traveling in horrible traffic 2 hours there and 2 hours back and spending countless hours in the waiting room to be seen behind schedule-they were always behind schedule when I was there-and the hassle of my husband and I having to take off work as I would not drive myself into Chicago traffic. Are you kidding? Me with Panic/Anxiety issues drive in bumper to bumper traffic? It didn't bother my husband as he is from that area so he was in favor of it to begin with as he was the one that suggested it. But after a year with no real results I quit going and asked my GP to take over if he was able and at that point he said he could. So my status as a profession un-paid lab rat continued with the medication trials, and in the meantime I continued to search online for answers and to see if there were any new treatments. At that time of course there was not much in the way of Migraine treatments. My Chiropractor did write a letter to my then manager to ask to have my work station altered to be more friendly to my neck stress which she thought was adding to my Migraines. So my PC monitor was put on a stand so it would be eye level. I asked several times at my former job to have the stereo sound lowered above my desk-each speaker in the ceiling had an adjustment knob where it could be turned down. After a while those requests went unheeded. I was becoming a nuisance to them and during that time I think is where the Red Bulls-Eye was put on my head and they were going to pressure me to quit as they could not legally fire a person w/a disability, at that time the Bush administration included Chronic Migraines as a disability, little good that did at that time or today as people who suffer migraines are still discriminated against.
My then current boss would deliberate walk by my side of the cubicle doused in a whole bottle of cologne, strutting his stuff (of stuff he thought he had worth strutting which was nothing, trust me) to make my work situation more unbearable. I do have to say that boss was as intelligent as a pea pod. I called him a Baboon silently and away from work. He was not smart enough to manage a banana cart out in the parking lot, so how he got this job was retarded. He only got it because he was married to the owners daughter, who also works there. It's a family run business and past history shows that most family run businesses end up running themselves into the ground if they don't have the qualified management team in place. And he was fast on his way to running the company down, honestly. Why else would be have all of a sudden left that job a little over a year of my leaving? My then Team Leaders who were all part of a close-knit group of friends in high school were conspiring to put pressure on me. I was criticized all of a sudden for work I had done the 12 years prior with no complaints until now all of a sudden. All my calls were monitored. I know they are to monitor calls from everyone in the call center from time to time but mine were ALL the time. Two of them were even making a point of talking about me behind my back, over their phones which they were just one cubicle apart, but making sure I could hear it. They would call in sick for no reason and of course never be called into account. One girl often had hangovers as to why she called in and the boss even had a running joke about it, but then she never was held accountable. A lot of them did personal online shopping and checking of personal email accounts, but my computer was closely monitored for any of these actions because then it would be grounds for termination. For a few years when I had to call into work and call off I would be the only one required to bring in a doctors excuse, but no one else was. It was out-and-out discrimination and I finally filed a complaint with the manager and then of course I was made out to be in the wrong! I knew then my days were numbered. But I didn't know it was my health that would ultimately pay the price but at the same time come to my rescue. The pressure got so bad that a week prior to my leaving work on FMLA and then Temp Disability I was having frequent panic attacks. On my last drive home from work my panic attack was so bad I didn't think I was going to make it home. How I did is a miracle. My last day of work was May 10 2010 when my FMLA was put into effect and I left that toxic hell hole. In hind-site that was the best thing that ever happened to me. The worse was of course my health suffered for it.
My GP at that time put me on Temp Disability, where he'd been trying to do for the past couple of years but I held off thinking, stupidly, that things would get better. Of course they didn't. He started trying different medications on me and raised my Topomax to 300mg per day. He put me on Xanax and another anxiety drug I cannot remember the name to save my soul. But after being on it a couple of weeks I had hallucinations that scared the holy crap out of me. I'd see moving black ink blobs moving on the wall in my peripheral vision. I hear semi-trucks blaring their horns at me when none were around. I imagined things missing and blamed innocent people. Of course later when taken off those meds I discovered what I did I apologized for my behavior and at least one member of my family has yet to forgive me for. Resentment runs high in my family they tend to harbor grudges than to forgive and forget and move on. That is the same in my husband's family as well-hold those grudges until the day you die. How productive and healthy. NOT. So not only was my workplace toxic so too my family life. I had it coming and going and I didn't know which end was up. All I know was panic attacks were frequent and the Migraines now became daily. I was put on a waiting list to see a neurologist because my GP said he was out of options and didn't know what more he could do. My best friend and patient advocate was with me on my last few appointments as I was not able to drive myself. The Migraines had gotten so bad they affected my vision and made me a danger on the road. Besides the doctor wisely banned me from driving. I had to wait 3 months to get into seeing this Neurologist who's last name starts w/an A so I named him Dr. A-Holio. His bedside manner was non-existent. He was a jerk. Plain and simple. He made me feel like I was wasting his valuable time with my "trivial" complaint. He said on my 1st visit which was my referral consultation that I was not disabled and to go back to work! WHAT?? I cannot see straight to drive a straight line, horrible Migraine pain daily and everything that accompanies that! My IBS was flaring up again but I was not eating dairy or soy so I had contributed that at that time to the stress I was undergoing.
And stress is a mild word. I was sinking into a deep despair. My best friend came over to check on me and I walked her out to the car when she was leaving. I cannot remember exactly how it happened but I was leaning onto her car door for dear life to keep from falling flat on my face. I almost blacked out. She had to physically guide me into the house and made me sit down and she ran out to the pole barn to get my husband for help. I was having issues with Hypoglycemia as it turns out. It would run in the AM low 50's and after I'd eat it would get up to 90. At that time believe it or not I was borderline "UNDERWEIGHT" I was so sick I could not stomach anything. Well the Neurologist took care of that real quick. When he tried a new med and it didn't work he'd order a steroid to break my cycle. Now mind you I have not NEVER abused my medication. I've never overused it. In fact I could be blamed for sometimes not taking it at all because it scared me first off and I didn't want to get used to it and have to go to something stronger. I do not react well to steroids. I pack on the pounds fast and I'm a witch on wheels (broomsticks are outdated). I lost track of how many times I was given steroids when he would run out of solutions. But it was too many because by the end of the year I had gained a lot of weight. And it was December 2010 when I got my 1st round of Botox for Migraines. It had just been approved for that type of therapy in Sept of that year. The insurance at first approved it, then denied it. We appealed with them 3 times, the doctor's office appealed 2x. I appealed to the state of Indiana Insurance appeals to no avail. We, or I should say my spouse paid the then $1500.00 out of pocket expense for this treatment that did not take effect. My spouse has always resented "me" for this, for some reason, instead of the insurance company where the fault lies. But this remains a sore subject with him as he kept stating all along I couldn't all of a sudden be that sick I need to get a job. But when I did have a job and had to call off he'd tell me I better not call off or I'd lose my job. My mind was spinning-make up your flipping mind, but no matter what I was in no shape to work. I could barely stand up w/o falling flat on my face.
In the meantime I went online and did exhaustive research on food additives and all the hidden names that these poisons go by. I'm sensitive to just about every food additive there is but what appalls me is that manufacturers are allowed to put the names of "hidden" sources for these additives but can boldly put on their label "no MSG added" when yeast protein, or glutamic Acid (the list is too long to name each one but that is just 2 of many) is listed in the ingredients and they are hidden sources of MSG!! Same goes for Soy and Gluten. It was after this I decided I can only eat fresh prepared foods made from scratch. Nothing canned, pre-mixed, frozen, prepackaged and no fast food.
During this time my friend had to intervene because I was so depressed I didn't want to go on anymore. And a very nice pastor came once a week to counsel me until he got to the point that he professed I needed professional help. Finally by May 2011 I asked the nice nurse who worked for Dr. A-Holio to refer me to a therapist I found online who specialized in women's issues and pain management therapy. During several sessions and after voicing my dislike of my current Neurologist she recommended one that specializes in Migraines and she had personal experience with him through her father's illness. So in Sept or Oct of 2011 I got into to see my new and still current Neurologist. He has been a Godsend. He also has empathy for what I've gone through and what I suffer because he too suffered Migraines. He vowed he will try every trick in the book and find new ones and he will not give up on me. My Professional non-paid lab rat job was still intact. I have always and will continue to be willing to try new treatments and drugs to try to find a solution that helps.
All this time during Oct 2010 I filed for permanent SSD. Of course my spouse was not supportive. He said I won't get it, don't bother with it, it's a waste of time and then of course his famous line during this period "go get a job". In May 2011 I got denied as I knew I would. They always deny you on the 1st try to try to discourage people from appealing and to get benefits. Of course my husband delighted in telling me "I told you so, now go get a job". I didn't give up. I can be a stubborn as he is if not more. I appealed and got a good appeals attorney that wouldn't take a fee unless he won. He worked long and hard to gather up all my old medical records dating past 2006 to present and he said I had a good case because I had a lot of medical documentation. I repeated this info to my hubby and he was his usual gruff non-supportive self. He was non-believing, as usual. he gets that from his mother's side, sorry to say, being very negative, non-supportive, borderline hateful, resentful, nasty, non-trusting and hording grudges. As he gets older he gets more like her. It's pretty scary at times but the sins of the parent fall on the child and it is oh so true in his case. Why do I stick around you ask? Well, like my parents I take the vows I made serious-always have, always did and always will. I'm not a quitter. In fact when faced with a challenge sometimes I fight harder. I almost gave up the summer of 2012 when I again hit rock bottom and my best friend had to intervene again and this time hospitalization and intense personal and group therapy had to take place. Of course I was blamed for that too-it was my fault, all in my head, it's you not me-on and on, yada, yada, yada. But anyway to finish the story of the SSD appeals I had my appeal hearing in April 2012. My Neurologist submitted a letter on my behalf per the request of my therapist. My therapist even showed up at my hearing and testified on my behalf which just blew me away. She believed in me and my case so strongly that she wanted me to win my SSD appeal. The appeals judge was impressed by this and declared me totally disabled on the bench that very day, Friday April 13th 2012. My husband's reaction was he told me it was just "good luck". My best friend was ecstatic for me as was my therapist and attorney. I was in a fog as I was fighting yet another migraine and had to take medication right after my testimony to the judge, when I was allowed to leave the chambers. During my hospital stay was when I was diagnosed with PTSD stemming from a past childhood memory that happened to me at the age of 11 by another family member. I had repressed it for so long it was coming back in night terrors that I found out later were causing my severe insomnia.
Since that time I have tried more alternative therapies that I have come up with my own and some I learned in the hospital and from other bloggers, as I was starting to get involved in blogging late 2012:
2.Meditation Music Therapy
3.Subliminal Music Therapy
4.Winter Light Therapy for SAD
5.Nintendo Wii for hand to eye coördination (recommended by PT Therapy staff at hospital)
10.Pets as Therapy (I already knew this from past experience)
11.Elimination Diet-yes, again. I tested negative for Gluten but could be intolerant to it and it was expanded that I cannot eat any leftovers more than 6-8 hrs old. If I was going to have something as a leftover it had to be frozen immediately and once thawed heated immediately and then eaten right away. I joke that pretty soon I will only be allowed organic home grown grass and drink distilled water. So my diet got even stricter.
12.Bible Study Group-as social interaction is vital to ones overall health and well being.
I was an almost daily regular on https://migraine.com/blog/ and would learn more about Migraines, treatments, medications used and at that time I found a blog from Dr. Dawn Marcus on co-existing conditions that can occur with Migraines. It was this link in particular: https://migraine.com/blog/migraine-comorbidities-fibromyalgia/ That is when I started putting 2 and 2 together. Through the years I was developing Fibromyalgia because all the pieces started to fit together in a jigsaw puzzle. Slowly it dawned on me as I thought back all these past years as my health started to take a nosedive. The light bulb went off! Are the Migraines part of the FM. Is the non-stop neck and shoulder pain along with the back pain related to the Migraines or the FM?? I took this newly learned info to my new GP where blood tests were done to rule out Lupus, Lyme and Thyroid along w/a slew of other things and I passed my Tender Point Test-I had all but 1 that responded. But now that 1 that didn't respond before has now been responding. Figures. This cartoon sums up my history thus far with doctors when I have to take them the information to be diagnosed:
So I take Cymbalta and Neuroton along with my other Migraine preventives and abortive. We're still in the experimenting stage and my next appointment with my Neurologist is this May 6th. This will be to the follow-up of the 2nd Botox treatment for Migraines I had on April 16 2013. I got major eyebrow issues and eye dropping from this session that I did not get before. Still having the Migraines but was told can take a min of 3 wks to kick in and up to 4 wks to see results if it's going to work. So on this coming Monday I will find out if we yet again change medications as it's been 3 months on Cymbalta and Lyrica-at the same dose I started. I think it's time to change it up again as the Lyrica doesn't seem to be helping with the constant muscle spasms. That is a real bothersome pain and prevents me from doing a lot of lifting and a lot of the exercises I want to do.
But I will still continue to experiment with items I find online on my own or as suggestions by a great online support group I have acured over the past few months. I keep searching for pain relieving gels and liniments, pillows (just now got a buckwheat pillow and so far neck not hurting as bad but jury still out as I will not rate it yet) my bed of nails for at home Acupuncture treatments, my Breo-eye massager. I have yet to find a really dark pair of sunglasses for outdoor use. I'm trying to do Gentle Yoga but the poses you get on your toes sends my feet into major cramping and spasing. I have learned to be more organized in my Migraine Rescue Regimen. I put together a large kit on my bedside table with everything I need during a major Migraine attack. I have that featured on an earlier blog. I then decided I had better duplicate that kit in a smaller scale and carry with me in my purse because I'd borrow a med from my kit to take with and forget to return it or visa versa. It's a bad, bad situation to be stuck out away from home and needing your abortive and pain management meds. So I have learned how to organize and streamline that to make things easier for me. Well, as easy as they can get.
I have lost a lot of friends over the years due to having to cancel at the last minute. My own family gets upset when I cannot make it to functions they want to go to. Even though they can see how much pain I'm in I still get this blank stare from them and their attitude is like "why don't you get up and do more-you'll feel better" or "it's all in your mind don't focus on it and it will get better" oh the list goes on. If Migraine Disease was not so stigmatized I think we'd get more understanding as a group. Even doctors are in on the stigma, and you'd think they'd be educated enough to realize it is a true disease. But yet we are treated like drug seekers and wimps and sometimes treatment is turned down. And here we lie suffering in even more pain because it's so mismanaged due to doctor incompetence and ignorance. It's a mess. I try to stay positive as stress adds more to the illness, but sometimes it is so hard, especially when your surrounded by so much negativity. And then too you see those commercials for OTC for "Migraine relief". Well if only it were that simple for chronic migraine patients. People just don't get it and you get to the point your so exhausted that your tired of explaining it over and over again. You feel like a broken record that is never listened to.
Do you have a migraine toolbox for when an attack hits?
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