I am tired of living this way
I am a 33 year old stay at home mother, and college student who suffers from daily headaches, chronic migraines, and cluster headaches. I have had migraines since I was 8 years old. I remember my first migraine like it was yesterday. I closed my blinds, turned off my lights, and climbed under a blanket to block out any light, smell, or sound. I screamed out in pain, and cried off and on all day and night. It was awful! Shortly after that attack, I went in for a cat scan of my brain. Nothing “unusual” was found, so I was sent on my way with a bottle of Tylenol, and offered no more help.
At 33, the scene of my first migraine has been repeated thousands of times and recently has become an almost normal daily routine. I am in a tremendous amount of daily pain. Everything seems to trigger my migraines (stress, hormones, weather, certain smells, loud sounds, bright light, missing meals, etc.) so I feel it is impossible to avoid most triggers.
My husband is my high school sweet heart. We have been together for 17 years (since 1993). We got married in 2003. He has never known me without migraines. Although he tries to be supportive, he is becoming unsympathetic, and I dare say irritated with my almost daily complaints of head pain. It certainly has had an impact on our sexual relationship. The poor guy has heard the excuse “Not tonight honey, I have a headache” one too many times. I stay at home with my delightful two young boys, ages 3 and 6. They are all day noise makers and full of excitement and energy. It breaks my heart that “Be quiet. Mommy has a headache” has been uttered so often that they are constantly saying it to one another, even on days when I have not mentioned any head pain. Being a mother with a migraine is supremely difficult. I am tired of living this way.
I have been in and out of doctor’s offices over the last three decades, and I cannot believe how insensitive and uncaring most of my doctors have been. I have tried preventative medications and abortive medications with little success. The side effects from the preventative medications have not been worth their benefit so far. I am currently seeing a neurologist through Kaiser Permanente about my migraines. I keep a daily migraine journal and rate my head pain on a scale from 0 = No head pain (rarely – to – never) and 10 = Severe head pain (more frequent than not). I also keep note of any triggers, weather or any other pertinent information.
In December 2009, I started preventative medication. I started with Verapamil, a Calcium Blocker, 80 mg, 3 x a day. Shortly thereafter, I experienced an 11 day migraine attack that almost landed me in the hospital. The medication made my face numb and tingly, made my heart beat and head throb heavily at any exertion, and very tired. It did not help prevent my migraines. I weaned off, in less than a month of being on it.
On January 17, 2010, I began taking an anti-depressant, Pamelor. I started at 25 mg (1 pill)a day, and slowly added more until I was taking 125 mg (5 pills) nightly. The medication seemed to help right away, dropping my migraines from 10 severe attacks in January to 1 severe attack in March and also in April of 2010. The good fortune did not continue. My severe attacks made their way back and I was having 3 — 10 severe attacks a month by December 2010. One thing about the Pamelor is that my daily headaches subsided. Although I had 10 severe attacks in June 2010, I had 13 days that month pain free! In December 2010, I had 3 severe attacks, but 27 pain free days. But, after a year on the medication, the side effects from the Pamelor were getting to me. After one year, I had gained about 10 pounds (my weight usually never fluctuates). I was very, very tired every day. And, last but not least, my libido took a dive. I was never in the mood for sex, even when I did not have head pain. And, when my husband and I did have sex, I had a difficulty reaching climax (which I had never had a problem with before). It was very frustrating.
So, in the new year of 2011, I went back to my neurologist to see what the next step should be. She took a very quick look at my year long migraine journal, and took me off the Pamelor. She said that having up to 10 severe attacks in a month (which I had in October 2010), was not satisfactory for a preventative medication, and since I was having some bad side effects, it was time to try something new. I somewhat reluctantly weaned off the Pamelor to try another medication.
So, January 20, 2011, I began Topomax, an anti-seizure medication. My mother also gets migraines, and has had some success with Topomax, so I was optimistic. I started taking 50mg daily for two weeks, and then 100mg daily for two weeks. This was all I could handle. I reacted poorly to the Topomax right away. It made me dizzy and nauseous. It gave me daily diarrhea, and made my heart race. Plus, I suffered from some of the most debilitating migraines I have ever had in my life. In 24 days on Topomax, I had 14 migraines, 11 of which were so severe I was bed bound in the dark barely able to function for days. On day 22 on Topomax, I emailed my neurologist to let her know about my trouble with the medication, and she emailed back suggesting that I wean off, and try yet another medication. This time: Keppra, another anti-seizure medication.
My first question is this — since I experienced a slight amount of success and relief from migraine pain with the Pamelor, which is an anti-depressant, shouldn’t I be trying other preventative medications from the anti-depressant family? Why are the medications I am trying all over the board in categories and uses? I am really scared to try this new medicine because of the way I reacted to the Topamax.
My second question is this — why do all of my doctors just want to hand me a prescription? I am aware of alternative treatments to migraine pain, ie. Chiropractics, acupuncture, botox, even allergists, but I am never offered anything but pills. I cannot afford to try out these alternatives out of pocket, but I suspect that my health insurance will not cover most (if any) of it.
I have never been compelled to write a blog before today. The reason I write, is because I feel like my friends and family are growing tired of hearing me complain about my migraines. They try to lend a sympathetic ear, but they really have no idea what I am going through. I hope that in starting this blog, and joining this online community of migraine sufferers, I will be able to reach out to people who understand the misery that is migraine pain. I am eager to hear other stories of medication and alternative treatment successes and failures. I am so tired of living this way.