I typically wake up around 4:30 am. That is, if I’ve slept at all! At night, I get into bed, turn out the light, and my brain revs up like a Hemi! I think about anything and everything! My childhood, old friends, jobs, conversations, restaurants, religion, myself, aliens, demons, pretty much anything and everything! I don’t sleep much anymore. Getting out of bed is now an ordeal. Do I have any appointments?! Does Mom?! (She doesn’t drive anymore due to vision loss.) If yes, I sit up and see what hurts. Is it my back, hips, shoulder, wrist, fingers, knee, etc? Depending on how bad and where, I use the heating pad or ice on the worst areas. After awhile, I stand up to see if I have vertigo or nausea. If I do, I take a pill. If not, I decide whether my migraine is too painful for me to shower. Sometimes, just the water touching my head is excruciating. I get dressed and decide, depending on what time the appointment is, if I can risk taking my pills and when should I take them so I’ll be clear headed enough to drive safely. Will I get pulled over?! Will I lose my license?! Will I have to cancel my appointment?! Will the Pain Clinic dismiss me for missing appointments?! Will I find another doctor?! What about my meds until then?! After a pretty intense panic attack (for which I take another pill), I figure out my next step. I have my coffee first thing in the morning. I know! The age old debate about caffeine and migraines. Should you or shouldn’t you?! I gave up caffeine for 3 months and pain level stayed the same. Coffee is one of the few pleasures I have to enjoy anymore. I’m not giving it up! I eat something small so I can take my first meds of the day without nausea and vomiting (although I get that anyway from the migraine pain!) I start off with 4 pain, depression and anxiety pills. If there’s no change in pain symptoms within 3 hours, I take my pill for breakthrough pain. I usually have to stop and rest for a bit to let the immediate head rush, dizziness, and sweating from the initial dose of pills settle down. In your eyes, it looks like I really haven’t done much of anything up to this point. As for me, I’m already exhausted from no sleep, head pounding from migraine and nausea, and stress from having to make so many decisions already. It’s usually around now that I start to cry. It all seems so ridiculous, useless, pointless, and never-ending. Is it worth the fight?! It would be so easy to just give up. Lie down and never get up again. It sounds so tempting. But I don’t. I continue on with my day. Praying it’ll get better before I completely lose my mind and will to fight. Better days ahead.
After exhausting every available avenue for financial support, I created a YouCaring page. I was and am still horribly embarrassed to have had to go to the extreme of what I consider begging. I don’t understand how I got to where I am now. I have worked full-time since my late teens after I graduated high school. As the years went by, I made more money and had better benefits. By the time I got into the dental field in my early 20’s, I knew this was the career for me. Over the years, I moved up from receptionist, to chairside assistant, to front desk manager, to practice manager. I loved my job, my doctors, and my responsibilities. When the migraines started, I was getting them pretty infrequently, maybe once a month. As they became more regular, I saw my doctor. He prescribed Fiorinal, which is notorious for causing rebound headaches. I wasn’t aware at the time, and my doctor was not well read in the treatment of migraines and assumed they were stress-related. I did some research of my own and went back to see the doctor. He referred me to a migraine specialist. After trying many of the drugs that I previously listed in this blog, he referred me to pain management. In between, I had tried chiropractic, acupuncture, biofeedback, and many supplements. In 2011, the migraines had progressed to daily or Intractable and I couldn’t work anymore. I saw a rheumatologist, who diagnosed Fibromyalgia in addition to the chronic daily migraines. This explained my severe body aches, exhaustion, and insomnia, which I thought were all triggered by the migraines. I’m in pain management now and no medications have worked so far. I filed for SSI Disability benefits in 2011. After 9 months, I was denied. I hired a lawyer and after another year, was denied once again. The lawyer appealed again and I was informed that in my state of Virginia, there was a 12-16 month wait for an appeal hearing in front of a judge. It has been 5 months now. I have depleted my retirement savings, sold my car, and moved in with my mother. I cannot get Medicaid until SSI is approved, which is ridiculous! Once approved, I can get both Benefits, but until then, nothing. Where is the sense in this?! Medicaid should be the bridge benefit between unemployment benefits ending and SSI starting. I have NO source of income. No family except for my mother, who is on a fixed income. I have lost my friends due to this situation and have no other support. Meanwhile, the cheapest medical insurance I can get through Obamacare is $475.00 per month with a $750.00 deductible plus co-pays. My medical bills are through the roof and I’m being harassed by collection agencies. This is in addition to my other bills and living expenses. I may need to declare bankruptcy, but I don’t want to ruin my credit. I have to think positively that I will be able to get a handle on these illnesses and be pain-free enough to work at least part time. So, that’s my situation. I’m depressed, have frequent panic attacks, and many side effects from all the medications I’m taking. Just when I thought my life couldn’t get any worse, I’m now begging strangers for help. The thing is, as quickly as my life spiraled out of control, it could have been any one of you in the same situation. Yes, I need help! And when I was in a position to do so for others, I did. I believe in Karma. What goes around, comes back around. I have nothing left to believe in. Bless y’all for reading.
In the past 4 years, these are the treatments, medications, suggestions that I tried and discontinued due to either no relief or serious side effects, including E.R. visits. What do I do when I’m out of options?! When I’ve tried it all?! When there’s nothing left?!
In no particular order:
Exercise – Walking – Yoga – Chiropractic
Biofeedback – Acupuncture – Acupressure
Breathing and stress relief exercises
Vitamin D – B complex – B6 – B3 – B2 – CoQ10 – Fish oil
Feverfew – Butterbur – Magnesium – Migraine Shot®
Potassium – Ginger – Peppermint oil
Local anesthetic injections, Occipital Nerve block injections
Excedrin Migraine – Ibuprofen Rx – Tylenol – Caffeine
Amerge – Relpax – Frova – Imitrex – Zomig
Butrans patch – Fentanyl patch – Vicodin – Oxycontin – Dilaudid – Tramadol – Oxymorphone – Methadone
Abilify – Prozac – Elavil – Pristiq – Wellbutrin – Amitriptyline
Fiorinal – Fioricet – Flexeril – Plaquenil – Restoril –
Prednisone – Topamax – Hydroxyzine – Promethazine
Tizanidine – Propranolol – Diclofenac
Botox injections – 31 injections in head and neck
Toradol oral – Toradol injectable – Lorazepam – Inderal – Lopressor – Verapamil – Depakote
During the course of a day, I feel like I experience every emotion there is. My go to is guilt! For being sick, being a burden, letting people down, not being able to push harder, not being able to work or earn an income, not having saved more money when I could, etc. I know that guilt is a useless emotion, at least in my situation. Everything I listed above is completely out of my control. Looking backwards, and wishing I had done things differently helps no one. It’s over and done! I realize this consciously, but fall into that mentality. I could’ve, should’ve, would’ve. But I didn’t and that can’t be changed. I compare my life B. P. (before pain) to my current life, as if they are two totally different lives. Because they are. I see almost nothing of the person I was in the person I am now. I miss the past me. I was independent, funny, friendly, always willing to help anyone at anytime. I prided myself on getting to where I was professionally. I loved my job and the “people contact” it provided. I loved going to the movies, to a restaurant, to a party, anywhere really, just to be out with people. The current me is dependent on family (of which it’s just my Mom), who is incredible, but aging and has vision loss. I can’t drive too often due to symptoms and/or side effects from meds. I’ve lost friends, some casual, and my best friend, due to cancelling plans or being sick. I’m not sure which or both as they stopped talking to me and won’t respond when I reach out. I can’t go to the movies, even alone, due to lights and noise, and smells. Restaurants are the same, as is shopping, concerts, and museums. Pretty much all of the things past me loved are out of reach now. Not to mention the financial aspect. All of my savings went to food, bills, medical insurance, premiums, deductible, and prescriptions. My only contact with people is the occasional chat with the doctors I see on a regular basis, phone conversations, usually with my SSI Benefits Appeal lawyer, and social media. Thank goodness for social media, as current me would have no friends without it. I feel closer to my online friends than I did to my “in person” friends. They are empathetic, loyal, generous to a fault, caring, and always just a keystroke away. They are keeping me sane. And from falling so deep into my pit of pain that I might never climb out! Bless them all! So I’m working on it, with the help of a counselor, to ease up on the guilt and my feelings of helplessness, and hopelessness. Current me is not necessarily forever me and I need to remember that every day! Better days ahead.
So it’s 9:00 pm on Valentine’s night, on what is going to be the coldest night in years here. Kicking off the coldest week. The power suddenly goes out. Our power lines are underground, so most likely, someone hit a tree with their car, or a transformer box blew. Either way, it was going to get cold fast in the house if the power was out awhile. We lit some candles, very mindful of my inquisitive therapy cat Samantha. We had one working flashlight and so we hunkered down and waited. And waited. I was strangely comfortable with the darkness, as bright lights, or any light for that matter, hurt my head terribly. I had been using a heating pad for my lower back and hips, but of course it’s electric, so there went that. I tried reading on my tablet for awhile, but the light from that was hurting my eyes. So I sat. And sat. And started thinking. And my mind went where it always does when not occupied with a distraction. To myself, my condition, my pain, my future, my financial situation, etc. And I started to cry. I cry a lot these days. More than I ever have. Is it feeling sorry for myself, guilt for being a burden, my extreme pain every day, my fear of never getting better, fear of losing my appeal hearing and not getting any financial assistance?! Or all of the above? All I know is that crying, for me, is not a release. It makes my head throb worse, which causes nausea, which if I have to vomit makes my migraine pain even more intense. My furbaby Samantha is so attuned to me and my pain that she curled up under the blanket with me and purred her little engine as hard as she could. I tried to calm myself down before having a complete panic attack, and I did. Sam’s purring, her nearness, her warmth, always makes things seem better. We must have fallen asleep for a few hours and woke when I heard the power click back on. Thank goodness it was only a few hours! I found myself missing the dark and the quiet, but I know I can’t live like that all the time. My demons seem to enjoy the dark, and I am more susceptible to their mind games in the dark. So I’ll stay in the light as much as possible to keep them at bay. Happy Valentine’s Day.
In my experience, people with chronic illness tend to hide or withhold certain aspects of our conditions from others. Be it friends, co-workers, spouses, children, even our doctors. This is not a smart choice, especially hiding it from our doctors. The more aware the people in our lives become, the more understanding they will be, and we can stop the feelings of guilt and shame. We don’t need this extra weight on our minds. We are dealing with enough. I admit that due to constant nausea from migraines and medication, I sleep with a bucket next to my bed. If I have to make it to the bathroom quickly, the pain in my legs, hips, and lower back will prevent me from making it in time. The same goes for car trips. I keep plastic bags in the door, just in case. When out in public, which I’ve come to dread, people wearing perfume or cologne are enough to cause instant nausea and vomiting. I’ve taken to carrying a medical face mask in my purse. Noise levels are often an issue, so I carry headphones. For bright lights, I’ve usually got my sunglasses on inside and I carry a baseball cap too. All of these preventive measures bring unwanted attention on me, but I have to put myself and my sanity first. To anyone who questions me, I’ve decided to make it a teaching moment and explain my symptoms and what these outside influences do to me. People for the most part are polite. There are always a few that will just never get it. Forget them! Not worth it! Like many chronic migraneurs and chronic pain sufferers, I also contend with depression and anxiety. I may start sobbing for seemingly no reason. I have random panic attacks. Tissues and anti-anxiety meds are always in my purse. These issues are just another component of our illnesses. Much like an asthmatic with an inhaler, a diabetic with insulin, a blind person with a guide dog, we have and need our coping tools. We have no reason to hide them or be ashamed. It is what it is.
As an aside, this is my space to vent, remember, journal, and share. My story is mine, and no one else will have gone through exactly the same journey. Just because a medication didn’t ease my pain, or caused specific side-effects for me, doesn’t mean it won’t be a miracle drug for you. The same is true for alternative therapies. I am not anti anything. Knowing our level of pain, any reasonable treatment is worth trying. My only advice is to do your research! The hardest part for me was finding a doctor that was educated in my illness, and that I felt comfortable in discussing my concerns. He is extremely empathetic, which is basically unheard of in their profession. I consider myself very lucky to have found my doctor. If you’re still looking, be patient. The right match is out there for you. Don’t settle! You are too important!
My next appointment with Dr. H. I told him in detail about my E.R. visit and reiterated that I had never really taken any heavy duty pain killers, except maybe while in the hospital. Trying a new approach, we agreed on continuing different preventives and using something less potent for breakthrough pain. He prescribed Depakote, which is used off label for migraine pain. Also Tramadol for breakthrough pain. I tried this regimine for a month, no relief, and horrible side effects from the Depakote. We tried Topamax, Cardizem, anti-seizure meds, anti-Parkinsons meds, and more that I can’t even remember. The Tramadol seemed to ease the pain somewhat, but I still needed a preventive. Dr. H. told me that the main difficulty in treating Chronic Migraine is that no two patients reacted the same to any one treatment. At this point, 6 months in, Dr. decided that preventives weren’t the way to go. We had tried every type available. You may be asking yourself why, by this time, I didn’t consider another doctor. I researched, in detail, as I tend to do, the doctors and treatment options available to me in my area. Pain management doctors were common, but most had horrible records of success. Some had legal action pending, and some were under review. My doctor specializes in Migraines, is a neurologist, which I prefer, and studied with the head of a prestigious clinic out West. They are still in contact and use many of the same methods. I asked my doctor what would happen if he ran out of options for me. He assured me that if that happened, he would refer me to his friends’ clinic for inpatient detox and treatment. At the time of this post, he still feels we have options not yet attempted. To continue, we tried nerve block injections to block the pain, which didn’t help at all. The next step was a long-acting extended release narcotic to try and keep the pain at an acceptable level, without spikes in which I would need the breakthrough meds. First one was Tramadol, since it seemed to help a bit and gave me little to no side effects. Turns out that Tramadol in my system 24/7 DID cause side effects. Onward, yet again.