It’s not just a bad couple of days here and there, THIS is a change in my LIFESTYLE. And it’s been really difficult.
I’ve been battling migraines for as long as I can remember. However, the biggest battle for me has been trying to make myself accept that I’ve had to adjust my life to accommodate my heath problems. This idea does not sit well with me and I have to keep reminding myself that it’s not an idea; my health problems are a FACT and ignoring them doesn’t get rid of it. I’ve been unwilling to accept that I need to change my lifestyle in order to live more comfortably and, let’s face it, a healthier and happier life. Not only is it hard to accept that your life has to change, but it’s also embarrassing and disappointing. I can’t even count how many important events, birthdays, business meetings, and opportunities I’ve missed out on because I couldn’t even sit up in bed more or less take a shower and dress up. And each time gets harder and harder.
Not surprising, the biggest help I’ve received is: YOU. That’s right, whoever is reading this right now, you’ve helped me overcome my guilt, anxiety, and desperation. Everyone who has shared their story on sites or blogs like this, to either help understand themselves or someone else, it’s helped me to realize that I’m not alone and that getting my life back is possible, even if I have to adjust and make lifestyle changes. Your stories are just like my stories, you’ve been doing the trial and error with treatments, you’ve figured out the tips and tricks to help get through the tough days, and discovered ways to appreciate the good ones. So, I’m saying a big thanks for you, for educating yourself and helping me to do the same.
As a child, I would get really bad headaches, everyone blamed it on my long hair at the time, which was very unruly so I wore it up most often. When I was about 11 I started getting headaches every couple of days and a migraine 2 or 3 times a year. With the irritation of my headaches along with some teenage angst, I defied my family who wanted to keep my hair long and cut off several inches so it was just shoulder length. Brushing my hair during even just a light headache has always made my scalp overly sensitive to even touch, so I’ve kept my hair short for most of my life to avoid have to aggressively comb it, also to cut down the time it takes for me to ready to go out. Because of some complications, my parents weren’t very involved in my life and I wasn’t diagnosed or treated for migraines until I was old enough to get a job with my own health insurance. Also, I didn’t have regular access to the internet in the 90’s so my knowledge on migraines and treatments was very limited, I just assumed there wasn’t much I could do. All I had was Tylenol and eventually found Excedrin Migraine, but neither helped much and I would just try to sleep it off as soon as I got the chance.
Unfortunately, when I was around 13, my mother was becoming a pretty bad alcoholic. Long story short, she drove home drunk one night with me in the car and we crashed into a ditch. My head went into the wind shield and I woke up a few hours later in the car with a bad concussion that never got treated. Since then, my migraines have progressively gotten worse, about 6 year ago I started having migraines at least three a month. It’s been 4 years now that I’ve had migraines daily, usually an average of 4 days with the longest one lasting 8 weeks. I’ve also developed severe Restless Leg Syndrome, I have sleep seizures that only allow me 15 minutes of actual rest for every 1 hour that I sleep, and I’ve also developed Fibromyalgia and Abdominal Migraines/CVS (Cyclic Vomiting Syndrome). When I explained the car accident to my neurologists, they have all explained that while the damage to my brain didn’t seem severe at the time, it obviously was and has contributed to the progression of the migraines and, in all likelyhood, caused me to develop the Restless Leg Syndrome, sleep seizures, and Fibromyalgia, which all have chronic neurological symptoms. That one bad night changed my entire life.
It’s been a difficult couple of years for me trying to find the right doctors to trust me when I explain my symptoms. At first, every doctor I saw told me that I was just depressed and needed to go on medications. Despite my arguing that I wasn’t depressed and was completely happy with my life, I was desperate for some relief from the pain, so I gave in and tried Zoloft. It was the worst 3 months of my life. Not only did my symptoms get worse but I felt like a zombie half the time and the other half of the time my anxiety got so bad that I would just break down crying every time I got home from work because I had held it in all day, not wanting to break down at work or in public. It took a long time for my body to recover from being on Zoloft, but it was a good learning experience for me because I realized that no matter what a doctor tells you, you still need to do your own research and not settle for a doctor that won’t be sympathetic to the fact that no amount of schooling or titles can compare to what you KNOW about YOUR own body. And when you find a sympathetic doctor, hang on to him/her for as long as they can help you.
As unpleasant as it can be, trial and error has at least helped me figure out what treatments don’t help and sometimes keeps me hopeful that I’ll find a better way to live with each step I take. Another thing I have to keep in mind is that I was also diagnosed with Polycystic Kidney Disease in 2010, and while my kidney function is still good, my kidneys are about 3 times larger than they should be, which causes daily back pain. I monitor my blood pressure, avoid sodium, and try to stay hydrated when the nausea has me getting sick several times a day. I’ve been hospitalized twice this year for dehydration.
Luckily, I have found a great neurologist who has really helped with treatments for my migraines and sleeping problems. I’ve tried almost everything she can suggest and right now I use 32 botox treatments every 10 weeks, which are injected into my forehead, temples, tops/sides/back of my head, neck, and shoulders. I also started tracking my triggers and have found that I’m extremely light sensitive (Photophobia?) and found the company Axon Optics in Utah. I ordered a pair of their FL-41 tinted lenses, which help filter out the specific types of light that trigger migraines, and luckily it’s discreet enough to look like normal glasses with just rose colored tint to the lenses. You can also have them add your optical prescription. Or you can send them your own frames and they’ll install the lenses with or without your prescription as well. This has been one of the best aides I’ve found, just for the fact that I didn’t even realize I was squinting my eyes all the time. I then realized after I wore the glasses for a few days, that all that squinting had been causing a lot of tension in my face and sinuses, which made my migraines worse and gave me sinus infections from time to time. It has also helped my eyesight, things look clearer with the FL-41 tint and bright lights aren’t paralyzing or as blinding, and I’m able to focus better at work and while I’m reading.
While I don’t take any preventative migraine medications anymore, I did try most of them including Amitriptyline, Nortriptyline,Neuronin, Verapimil, Topamax, and several others which didn’t provide any relief for me. I was really wary about botox injections, not wanting to add anymore chemicals to my body, but I got desperate when the medications weren’t working. I did a lot of research beforehand and really took my time deciding if this was a good decision for me. I decided to try it out and I’ve been doing the botox treatments every 10 weeks for the past 9 months, while wearing the FL-41 tinted glasses daily/nightly to avoid light triggers as much as possible. I take Maxalt and Reglan or Zofran when meditation and natural remedies like ginger ale don’t help (most of the time they usually don’t, but I like to give my body a chance to correct itself), and I just starting using medical marijuana within the last 2 years to help with the symptoms. I live in CA, so I have my medical marijuana card. I had never done any type of drug before, having an alcoholic mother who likes to party dissuaded me from even experimenting. It wasn’t until I did the lenghty research about the medical benefits and risks that I decided to try it out. I’m really glad I educated myself before trying it and I highly suggest to anyone with a medical problem to do the research about medical marijuana and see if it can help you. It’s worth a chance to educate yourself about a natural treatment that, chances are, it’s better for you than a pharmaceutical one.
Being a single, 26 year old female, I support and provide for myself by working in the IT departments for health care companies. In order to afford my living expenses, I have to work full time, but at times the pain can force me to be bed ridden and the nausea can cause damn near constant vomiting for 2 to 5 days. Luckily, the company I work for, my superiors, and coworkers are all very supportive when I need to take a sick day or come in late/leave early. They’ve been amazing, I’m so blessed and great full to have my job. But still, most days I just have to suck it up and go into work for as long as I can stand the pain and use what I can when it gets worse. Instead of smoking the medical marijuana, I have a Magic Flight vaporizer, which is a small wooden box that heats the grounded up herb to the temperature it needs for proper THC extraction (112degrees C/251degrees F). It’s not harsh on your lungs, although you will still cough, you’re just breathing in a vapor instead of smoke and ash. Personally, I prefer to vaporizing to smoking, it’s a better relaxation feeling. And I’ve just recently started using the edibles for pain management and hash oil as a topical salve for my joints, temples, and neck during a migraine attack.
My triggers are mostly bright lights, too many loud sounds/voices, stimulants (too much excitement or confusion), hot weather, sudden weather changes, physical stress, sleep deprivation, dehydration, strong smells (floral or offensive), my asthma allergies can sometimes provoke a migraine (I’m allergic to all animal dander, strong scents, smoke, dust, mold, all pollen, trees, and grasses), processed/canned/frozen foods, any type of preservative like MSG, any kind of “fake” or no calorie sugar like Splenda, raspberries, bell peppers, bananas, cantaloupe, and I’m still finding new triggers all the time but I seem to have the main ones figured out.
With my migraines being so severe, they tend to trigger my other health problems. Just like I tried with the migraine preventatives, I’ve tried several different medications for my sleep seizures and RLS. Right now I’m on 20mg of Doxepin with 50mg of Savella nightly, and medical marijuana when I really need to sleep. While this combo has helped more than any other treatment, sometimes my sleep is still lacking in that overall “rested” feeling, I’m just CONSTANTLY tired and have little to no energy most day but when I lie down to sleep, I’m unable to get any actual rest. I’m still working on trying to find the right treatments, but until then I’ve just been trying to take it easy and not over exert myself when I don’t have much energy, which can be very frustrating when I have things I need to get done. Not getting proper sleep triggers each one of my health problems, so it’s very important to me. I take 25-50mg of Savella in the morning to help with some of the daily aches, pains, and exhaustion and I take 100-150mg of Tramadol pretty regularly (50-150mg every 6 to 8 hours) when I can’t medicate with medical marijuana, which helps with the pain and inflammation. While Tramadol is said to be non-habit forming, I’m trying to replace the Tramadol with medical marijuana as much as I can to avoid the side effects (“itchy” feeling all over the body, sometimes make me sleepy, and constipation). Most days my Fibromyalgia symptoms are exhaustion, joint and muscle pain, dizziness, mental “fog” and confusion, memory loss, cold sweats and skin irritation, unexplained pain, and lack of energy. It can really cripple me some days, but it seems to be triggered by the same foods that trigger migraines for me, so try my best to completely avoid eating out and when I only make natural/organic home cooked meals, the symptoms ease up a bit here and there. Every month I get a little better at avoiding triggers, the only problem I still have is that physical stress can trigger it out of no where.
The latest issue I’ve been dealing with is Abdominal Migraines or Cyclic Vomiting Syndrome. I had always gotten stomach aches as a kid when I was stressed and while I was living with my mother I was constantly taking Tums and Pepto Bismol to try and ease the cramps. Sometimes it helped, sometimes it didn’t. But for the past year, every couple of weeks I’m overcome with sharp, stabbing, and crushing stomach pains in the center of my abdomen and I vomit for hours and sometimes days. As I said before, I’ve been hospitalized for becoming so dehydrated, the last time it happened because I was vomiting every 20 minutes for 2 days straight. At first the doctors in the ER thought my appendix had burst, then they thought my gallbladder needed to be removed, then they thought I had a bowel obstruction, and finally one doctor remembered an study he had ready about Abdominal Migraines and CVS and realized that’s what was going on with me. I still have to go to a follow up appointment with a specialist to get the full diagnosis, but at least I know what I’m dealing with now. Basically anything that can trigger a head migraine can trigger and an abdominal one, as well as spicy foods, eating too much, and eating while lying down. I’ve been extra doses for Zofran for the next few weeks and with the medical marijuana, it seems to be really helping.
My story isn’t much different than anyone else’s, but it doesn’t seem like we all have the same symptoms and the tips and tricks on how to grin and bear it. Sharing stories has been so helpful to me, I hope my story can help one of you out there too. With the internet so readily available pretty much every where we go, there’s no excuse not to educate yourself and be aware of your options because when your health starts feeling worse, being unprepared makes it feel impossible to get through. Having the necessary knowledge really helps me accept my new life adjustments, to make the best of it, and ultimately realize that it’s no less than my previous life; it’s just a different lifestyle.
Cheer up, butter cups.