How my chronic migraines ruined my life
I got my first migraine at the early age of 12. I can remember it so vividly because I thought I would die from the pain. I was at a softball game in which I was on the team and I was in left field. I don’t remember having any aura, or other signs that it was about to happen. Instead I remember just one minute being fine and the next minute having to lay down right there on the field in the middle of the game. I started to roll on the ground grabbing my head and sobbing so hard everyone started running to me not knowing what had happened. My mother was there in the stands and she came running so fast, she got there before anyone else. She was a registered nurse and one of the best and since migraines run all throughout my family, mainly on her side, she knew right away that was what I was having. My coach had to carry me to our car because I couldn’t open my eyes or even walk… I just buried my head into his chest til we got to our car. My mom took me right to the emergency room and I was still sobbing the whole way there while I kept screaming “when is this going to stop… I feel like I’m dying”.
They got me in right away because it was not sure if it was a migraine or something worse. They did a CT scan and a MRI, drew blood and had a neurologist come down to do a more through exam. They did find what they could only describe as a white-ish “spot” on the left side of my head close to behind that eye. They gave me fluids and some pain medication and sent me home to sleep it off and an appointment to see another neurologist in the next few days. At my age they were very cautious in giving me certain kinds of medications so I wasn’t getting much relief on that front, instead they suggested a “pain thearpist” to help me work through my attacks and the awful pain that came with them. I also started getting extremely nauseous and started vomiting a lot and getting visual auras before an attack.
So finally they gave me the diagnosis of chronic migraines and I was put on a small amount or regimen of medications. After that I remember having periods of getting about 4 migraines a month or 4 migraines a week. As I got older I was able to be prescibed stronger preventative and abortive medicine and other treatments. And once again I would have some improvement for a little bit of time but they would always come back with a vengeance.
Fast forward to my 20’s and this was when I started trying many other things besides medication because after all those years of being on so many different meds. My organs were starting to show some damage especially my liver and if it continued I would end up on dyalisis. Here’s a run down of the treatments I did: I had an occipital (my spelling is horrible) stimulator which was surgically “implanted” in my scalp and had wires sticking out my head which I plugged into a little box to send electric “currents” thru my brain, I endured 5 months of weekly Botox injections in where I had 14 injections total each visit 7 on each side of my face starting at my forehead and down to my chin area and what made it even more painful than the injections alone was that my doctor forbade me to take any of my abortive and even preventative medication to see if the botox was working and it had to be the 5 months of the injections and another month after that again to see any results,(at this point my medications consisted of Depakote 1500mg twice daily, and Imitrex injections which hurt like hell and fioricet and phenergen for nausea and vomiting), after Botox I went for a round of trigger point injections mainly in my neck and shoulder areas because my neurologist noticed my neck muscles were always extremely tense and these shots might help to relax them and therefore reduce my migraines. I did physical theary also for my neck for strengthing and loosening the neck muscles, I went to a chiropracter, accupuncuture, took supplements like feverfew, vitamin B-2, magnesium,etc…and more medication with lovely side effects like weight gain, taccardia, GI issues mainly vomiting which at one point I lost 40 pounds in the matter of 4 months, and due to the pain and dissappointment that nothing was helping I became extremely depressed and ended up on anti-depressants and sleeping pills.
Finally as a last ditch effort I was referred to Jefferson Migraine Center in Philadelphia,PA. I live in Connecticut and because my husband had to stay home with our 3 year old daughter, I made this trip all by myself. Originally I was told I was going there for an inital evaluation exam that would last 6 hours or so and then go home and make plans for treatment then. But after the 6 hours they decided right then that I needed to be admitted in-patient for at least 6 weeks or so.
All I had packed was one change of clothes and one pair of pajamas because I made a reservation for a hotel right near the hospital to stay the one night since the train ride was 4 hours, the appt. 6 hours and there was no way I could handle doing it in one day. But I was in shock that here I am alone in a different state and being told I have to drop everything and be admitted right then and there. I was terrified they had maybe found something like a tumor with all the tests they did that day to me and also being so far away from my family. When I called my husband to tell him the news he too was shocked and worried and also was scrambling around trying to figure out how he was going to be able to work and take care of our child by himself for the next 6 weeks or so. He also had to make the trip because he wanted to speak to the doctors, bring me more clothes and just tolietries, magazines, anything to make being there alone a little less horrible. After all the paperwork was done they brought me up to my room which was just a single hospital room and though I was allowed to stay in my own clothes I mainly stayed in pajamas cause I pretty much spent all my time in bed. The reason for that was they told me they were going to try a new treatment that would require the medications to go in through an I.V. 24 hours a day, seven days a week. The medications were D.H.E. and lidocaine. And because they stopped all my other meds. they actually gave me methadone the first day I was there and then discontinued it because the fioricet I was taking also had codeine in it, so they didn’t want me to go through withdrawel but I ended up still having withdrawels from the codeine, the sleeping pills, anti-depressants, and the anti-anxiety medication I started a year or so before that since I was getting panic attacks when a migraine attack would last up to 5 days or longer. It was very painful, uncomfortable, and very scary.
There was nothing to do there besides lay in bed and watch TV or read. The only time any patients got out of their beds and were able to socialize or whatever was a once a week meeting/group thearpy session that lasted less than an hour. I attended the first one because I was going stir crazy in my room but there were 15 patients and I had about 3 minutes to speak and got nothing out of it. Unfortunetly because of the distance my husband could only visit every other week and any phone calls I made couldn’t be too long because you were charged seperately for your phone bill. It was also during Christmas time and since my daughter was only 3 and I never really got the chance to say a real good-bye before I left in the first place I begged and begged my doctor to let me go home for the weekend of Christmas, about 4 days, and then I would come back for the remainder of the treatment. He did allow it but informed me that they wanted me to stay 2 more weeks regardless of me going home because I wasn’t showing much improvement and I was told when I signed the papers to be admitted that it was for at least 6 weeks but could be up to 8 weeks. Once he told me that I was seriously thinking about never going back but I knew I had to give it all I could since it was one of the last things left. In order to keep the medication still going in everyday, the DHE and lidocaine, I had to have a tube implanted in my chest with a tube sticking out and lets just say they gave me 1mg of ativan and then went to slicing me open…I almost hit one of the nurses that was holding me down cause it was God awful pain… they sent me home with vials of both medications and big syringes and so three times a day at home I had to inject myself with the meds.
I’m grateful my daughter was so young and didn’t really see much, I always did the injections in private and hid the tube whenever she was there. It scared me looking at this tube coming out my chest so I couldn’t imagine a small child seeing this. And after all that NO improvement. If it wasn’t for my daughter and even now I would have thrown the towel in a long time ago. I just can’t do that to her, abandon her like that. But there is a part of me that does wish a lot of the time that after all the damage my organs have sustained and all the medications I take now since I was finally diagnosed as bi-polar II, I’m on birth-control pills and the ones where you only get your period four times a year but because I do get severe menstral migraines my OB/GYN allows me to skip the week where I’m supposed to have a period and so I don’t get a period ever, I take 400mg of lamictal which is mainly for the bi-polar II but I was prescibed that at one time as a preventative for migraines, I have to take 2.5mg of ativan spaced out through the day, I take 12.5mg of Ambien to get any sleep, if the Ambien doesn’t work I also have Dalmane which can slow your heart rate so low it can be deadly, I’m still taking the Imitex injections around 4 shots a week (I tried Imitrex in the pill form and the nasal form but only the injection works and they are very painful), I still take the fioricet with codeine around 3 days a week, and I have Phenergen 25mg tablets when I am vomiting during a migraine attack or because of my GI issues. Next week if my lamictal levels are where my psychiatrist wants them to be than she will add on top of everything else an anti-depressant. I once had one treatment of ECT but because it caused a severe migraine I never tried again but if this depression doesn’t start to get better than I will try ECT again and deal with the side effects whatever they may be.
I know this story is extremely long and goes into too much little non-important details of crap but in closing to just say how badly my migraines have made my life…I had to quit my job, a job I loved and one that I could have moved up the ladder as a bank manager running my own branch of the bank, and I am on disability, and to get approved by the government to pay someone disability for migraines is extremely difficult but this is how severe they are in my life. I’m 38 years old and if things ever improved I still have a good 30-35 years to go back to work so when I am older I will have some kind of retirement money, as of now I collect barely enough to ever get by myself, if it wasn’t for the fact that my husband is a great supporter for our family, I don’t know where I would be. I just feel so defeated by this affliction and because there are no tests that can show the migraine, and from just looking at someone even during a horrible attack, there are no outward “signs” for a person that never had a migraine to really know what it feels like. I have actually had some mainly ER doctors treat me like I’m exagerating how bad it is, and that I need to learn to just deal with the pain…
That is why I am here on this website because its so comforting that there are people and doctors that beleive and know how debilitating migraines are and how they literally rob you of any kind of normal and happy life. I am going back to Jefferson Migraine Center in PA in September because the last two neurologists I have seen in the last 4 years or so have done little or nothing to help at all and when I called Jefferson they told me they have some new treatments and that its definetely worth it for me to come back. So I’m just praying everyday til my appt. that something will work and I’m not looking for a miracle, meaning I don’t expect to walk out of there “cured” and never have a migraine again. But even if they can get them down to 2 migraines a month even, I could deal with that… If there are any doctors that read these stories, I don’t know if you respond to any, but if you do I would so appreciate any advice or thoughts about what I can do before all hope is gone and I give up… thank-you Malissa O