migrainesurvivalblog

If It’s Not One Thing, It’s Another, and Another, and Another…

“Life has many ways of testing a person’s will, either by having nothing happen at all or by having everything happen all at once.” ~ Paulo Coelho

Migraine patients often have secondary health issues. You are not crazy. Your body is in turmoil and is sending you a message. Listen to it. Pain is real, and it will control your life if you let it. Get the help you need, even if it means yet another specialist, another appointment, and perhaps another medication. Don’t concern yourself with the stigma attached to these diagnoses. You can only handle so much…

Degenerative and Herniated Discs

In 2004, I started to have serious back and neck pain. I continually had herniated discs in my lower back that eventually started to affect my sciatic nerve. MRI results showed that I had degenerative discs. I was looking for a connection to the back pain and the migraines. There had to be one, right? How could someone in their early 30’s have two chronic health issues? In October, 2005, I had a lower lumbar laminectomy surgery. Sure, there was concern of the nerve damage, but more than anything, I couldn’t physically and emotionally handle dealing with another chronic pain issue. The surgery was successful for about a year, and then I started having pain higher up in my back, and my neck was always an issue. So I was referred to a pain management doctor and had regular epidural injections to manage the pain in my back and neck.

Interstital Cystitis

In 2008, I started having frequent Urinary Tract Infections (UTIs) and kidney problems. I was hospitalized a couple times for serious infections, and was over prescribed antibiotics, so they became useless. Hmmmm, over medication a factor here?!?! I was referred to a Urogynecologist (because I needed to add another specialist to my list of physicians), and was diagnosed with Interstitial Cystitis (aka Painful Bladder Syndrome). So I added more preventative medications to my list to manage this disease, and attempted to control my diet to limit the bladder pain issues, to no avail. At one point I was in their office weekly and then bi-weekly receiving catheter treatments to help with the pain. I was really starting to lose it. Pain in my head, pain in my neck and back, and now in my bladder. So, in January, 2009, I had an Interstim bladder implant. I had a battery, similar to the Neurostimulator, implanted in my left hip. And similar to the Neurostimulator, I have a remote that I can use to adjust the stimulation of the device. I was now officially bionic! It was actually very successful, so I was able to cross that problem off the list, for the most part.

That is, until I had a severe migraine that mimicked a stroke. My husband had taken me to the ER because I was experiencing an unmanageable pain episode. When I arrived, I started to feel very “off”, and my husband noticed that my speech was slurred and my face was drooping on one side. I was immediately taken back to a room, and they ran the full range of tests to rule out the possibility of a stroke, with the exception of an MRI. I was not able to have an MRI because of the Interstim implant, so they did a CAT scan instead. When my Neurologist learned of this episode, he insisted that an MRI was essential to ensure there wasn’t something missed with the CAT scan, and something more going on with my brain. So the Interstim was surgically removed, which did NOT please my Urogynecologist, I had the MRI, which was normal, of course. I had to wait 3 months to have the Interstim re-implanted, and during that time I realized just how successful the procedure had been, because I started having severe bladder pain again. My Urogynecologist said he would not remove the implant again for a diagnostic test. No arguments there!

Tubal Ligation

In 2010, I had a tubal ligation. My Neurologist would not support my being on birth control any longer because I of the severe migraine that mimicked a stroke, and birth control increases your risk for stroke. I was not prepared to have children at this stage in my life, and quite honestly I had known for some time that it just wasn’t in the cards for my husband and me. I could barely care for myself, how would I manage caring for a child? And there were the risks and realities as well; what if I got pregnant and was taking all of this medication, what affect would that have on the child? If I was pregnant and had to stop taking my meds, how would I make it through the pregnancy with the extreme migraine pain? And with the hormone changes that you go through with pregnancy, there was a possibility that my migraines could get worse. WORSE? I wasn’t willing to risk that. And then there is the hereditary factor. What if I passed migraines on to my child? Could I live with that guilt? The answer to all of these questions was, no. The surgery was emotional for me just the same. Accepting something as reality, and then actually going through with it is another thing. But I haven’t looked back. I have accepted that these are the cards I was dealt, and that taking care of me is the number one priority.

Syncope/Fainting Spells

In 2010, I started having fainting spells, and was diagnosed with syncope. Syncope is defined as: rapid onset, short duration, and spontaneous recovery from fainting due to low blood flow to the brain and low blood pressure. This may have been an accurate diagnosis at the time, but is not something that I still suffer from today. In looking back, I think the fainting spells were side effects of being over medicated. Regardless, the fainting left me with 2 broken bones on different occasions. I woke one morning with a sore wrist and arm, and after a quick trip to the doctor, learned that I had broken my wrist. I most likely fell in the middle of the night, and have no recollection of this happening. I sported a lovely arm cast for about 4 weeks. While I was still in the cast, I was attending a meeting at work with about 200+ people in attendance, and I fainted during a break. An ambulance was called, and I was taken out of the room on a stretcher. Beyond humiliating. Several months later, I was again at work, and lost my balance walking down stairs, and broke a bone in my foot. I had the pleasure of using crutches for a short time, and transitioned to wearing a fashionable black boot for another 4 weeks.

Severe Allergic Reactions

Over the years I developed several severe reactions to medications: Compazine (an anti-nausea med, reaction: dystonic), Reglan (anti-nausea med, reaction: anxiety and wanting to crawl out of my skin), Methergine (used to stop severe bleeding after child birth, reaction: anaphylactic) and Bactrim (antibiotic med, reaction: hives). I always carry with me a list of medications that I’m taking, and meds that I’m allergic to. Each time I have presented at a physician’s office, hospital or pharmacy, I ensure they have this information properly documented. Ask questions, and if you are in the ER or hospital, or picking up a new med at the pharmacy, make sure you double check with the nurse or pharmacist before he/she administers or dispenses meds. I have lost count of the number of times I’ve provided my allergies, and the physician orders the same med, or one in the same family that could also cause a severe reaction.

Depression

In addition, I battled with depression and anxiety ranging in severity throughout the years. The first time that a Neurologist suggested that I needed to start taking an anti-depressant, I left her office sobbing. I was better than this, I was not crazy, I was strong, and I did NOT need another diagnosis. But I was wrong, and I was not crazy, I was very sick. After refusing to take the prescription when I left her office, I called back a couple hours later asking the nurse to call it into my pharmacy. The side effects of the meds are awful, but the alternative is worse, and that is being emotionally unstable, which I most certainly was.

Anxiety

And then there is anxiety. Why is nothing helping me? What if something else is wrong with me that is causing all of this pain and disease in my body? What if I run out of medication before it is time to refill? What if I have to cancel plans, again? What if I get sick on vacation? What if I have to call in sick at work, AGAIN? What if, what if, what if? These feelings are real, and they are warranted. It is terrifying, and is another facet of the disease. I eventually started to have real panic attacks worrying myself about this, that and the other thing, and eventually requested a medication to help.

Medications for depression and anxiety are useful, but medication alone is not always the answer. I sought the help of psychologists and psychiatrists over the years. I became a very good actress, and was very familiar with putting on a happy face, even when I was feeling my worst, because I just wanted to bury the issue and not have to deal with it. I also didn’t want to be a “Debbie-downer” and be that person that was always complaining. So I rarely did, and after time I bottled up my emotions because I didn’t want to be a burden on my family and friends. But eventually those closest to me saw through this, and urged me to seek help. And I’m grateful that I did. It is painful to discuss and let it all go, but it is essential for your sanity and your healing. The most helpful psychologist I ever saw was also a nurse. She understood, to an extent, my medical problems, and though it wasn’t “officially” clinical advice, she would talk with my Neurologist and psychiatrist, with my permission, about her thoughts on how to treat me on their end.

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