Tag Archive | Migraine

Need a Lift?

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Ever had your car broken down on the highway, had to pull over, watch all the other cars zoom past you, life goes on full speed while you wait for help?

That’s how I’ve been feeling every day. Watching healthy people pass me by.  Live their lives without me, at a pace I cannot keep up with. It’s not anyone’s fault now. I can’t expect them to wait for me. They can’t expect me to keep up. And so I’m on a different track, like an alternate reality, life in the slow lane.

I suppose I’ve always had a taste of this, a bit of exclusion for this reason or that. But now the reasons have multiplied, yes like rabbits, why did my mind go there, and I’m finding that I’m not really included anywhere now. Exclusion has become the rule. I am a ghost in my own life.

And just like when stranded on the side of the road, I have no escape route. My body seems to have more than a simple flat tire, not that I would know how to change that myself anyway, but someone would, eventually. Nope. I have one of those issues, that when you lift the hood, multiple people stare and scratch their heads, going “hmm, not even sure how she made it this far, what a mess in here”.

And then I think, ok, what if I do find someone that figures it all out and can actually fix me? How am I supposed to get back into traffic? After all this time just drive back in without getting run over? I think not. but that seems lightyears away if not impossible, so whatever…

OK, enough with this bad highway metaphor. you get it. Just a thought I had.

What I’m trying to say is that I’m completely worn out by all the medical tests these doctors are ordering, and all of the abnormal results that prompt more tests and referrals to more doctors. At first, doctors were saying, I need to accept my new reality, lower my expectations, this is as good as it gets. They were not listening to my symptoms but painting their own conclusions about me. I kept complaining and using different words until I got sent for some tests. I think they were thinking nothing would come of it, but let’s satisfy the crazy lady.

But then wait. She actually has abnormal reflexes in her visual and auditory system? Could this explain the sensory overwhelm she has been describing for years now that has been dismissed as anxiety? YES

Do I have anxiety? yes, not denying that, but this is different, and please give me credit to know if I am anxious or if my nervous system is giving me a similar feeling due to an autonomic response. Well they do now.

Turns out I have ocularmotor issues, visual processing delays, saccadic dysmetria, hyperreactive auditory and visual stimuli with little suppression. I have loads of other cool words I could insert from my test results that I don’t feel like looking up right now. My world is literally overwhelming my nerves. So all of the wacko, wonky CNS stuff, like feeling lightheaded, sweaty, tightness in chest, nauseous – all very similar to anxiety – can be brought on by ordinary sounds, smells and sights. More intensity means I have more intense reactions, similar to motion sickness. Its like I have sensory input sickness. My vestibular system is overloaded and confused.

Okay. So I’ve had balance issues for nearly 30 years, maybe all of it wasn’t from the spinal cord injury, but made worse from it? And the migraines are a product of a worn out nervous system trying to make sense of the world. See isn’t this fun? I don’t blame those doctors for pushing me aside, what a freaking mess.

And I know this is not written clearly. Apparently thats something I have also lost, the ability to think, recall, and use thoughts in a proper sequence. I’ve been avoiding writing much due to all my issues and frustrations and irritating red underlines on the page to correct. But maybe I shouldn’t. Maybe I should trust that whoever reads this can put it back in the proper order and you all just may enjoy a daily puzzle, who knows. See I’m still snarky so I know I’m still here hidden in this mess of confused neurons.

Anyhow I met a new vestibular rehab therapist today that has dared to give me some hope. You all know how dangerous that can be, to be given hope once you have gotten to a stage of acceptance, only to have it yanked away again. I’m so afraid to walk that line, and yet I must if I am going to keep trying to battle this and get well, or as well as possible. I could really use some support so I’m not sitting on the side of the highway all alone.

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Trusting Dr to relieve pain

This Dr didn’t run away or insult me! He’s up for the challenge of a ‘complicated’ spine.

I’ve seen numerous orthos and neuros over the past 20 years for the chronic pain, balance, weakness, and whole big ball of tricks my spinal cord injury causes me. Now see it has been tricky to find a Dr that would treat me, they either say I must see the Dr who originally did the surgery…yes well that was over 20 years and he was pediatric surgeon and is now retired and well my a$$hole AF tried to sue him for paralyzing me during the surgery so I didn’t really get great after care so I waited until I was an adult.

No I don’t have any records from that surgery because well see above, and the hospital threw out all my records without asking me and I didn’t know they could do that because I hadn’t been there in over 10 years because I was busy learning how to walk again, escaping AF, raising my kids, and it didn’t dawn on me to take care of myself.

I have such a rare childhood scoliosis with full fusion and metal instrumentation along with the nerve damage and now so many degenerative discs and odd bone formations from the areas of the curve that were not corrected in my lower back and neck that each top spine surgeon would refer me to another, wait another 6 months for that appointment to be asked the same stupid and triggering questions all over again.

Well I think I found a guy. good and bad, because we may be talking surgery…

He says he does 4-5 cases like me a year, he was not phased by my complexity at all. He is ordering full contrast CT scans and we will meet again in a few weeks. I felt at ease with him and his office, other than the triggers, so many unavoidable triggers. But I used my new skills to keep myself grounded and present and lower anxiety and it was pretty much ok, ok enough that I went and I’m ok to go again.

It’s so hard for me to trust Dr’s so this is a huge step. Feeling scared and hopeful too. He might be able to repair and reconstruct some bad discs and restore the natural lumbar curve I should have instead of this fix flat back that is painful and hurts my hips and legs and makes it hard to stand and walk. I’m ready to let him try, at this point, I’m not working, I can barely walk anyway, I’m working on my mental health, why not consider attacking some chronic pain issues too? Back surgery has come a long way since 1988….

So I’ve only just met him, nothing has been decided or even actually discussed yet. I’m just amazed that I’m willing to discuss it. Does this mean I have less fear? Think I’m worth it? Or just making sure I don’t have to go back to work anytime soon? Or do I actually think I might die during surgery and this is me giving up? I’m actually not sure why my brain is allowing me to do this finally.

I think its because the gabapentin gave me a taste of a life with slightly less pain, and now I’m curious if we can do even better. What if more of my energy could go into living life instead of distracting from pain? That’s a huge what if, and so I’m tackling that from both physical and mental dimensions.

I’m way too stubborn to admit DBT way be working for me, especially after that terrible post I had about all being crap. Much of it was crap. But damn sometimes great things grow in crap, right? hmmm. My brain is thinking different thoughts. I know it is. Too hard to explain yet though.

The weird thing was this guy was so alarmed at my neuro state in general, my entire right side, my arm has such a deficit like my leg now.Most days I can barely hold a pen long enough for my signature. He said I have the same appearance as his older patients that suffered a stroke years ago. I explained to him about the hemiplegic migraines, and he said “hmmph” and asked me if I had a head MRI because he only saw head CT on file. I was like ummm ???? And then he got angry and said I need to call my neuro and ask for one right away. ok…

So I did call them today and of course the neuro I was seeing there has left the hospital and I have not yet been reassigned a new Dr and blah blah blah, and oh they did see some notes that I was not to have an MRI due to the metal in my back, and said well I just came from back specialist and he said its fine to have the MRI done and to call you…The nurse says well why didn’t he order one then – well because he is a spine specialist and he wouldn’t be able to read it for me, so he was just telling me that out of concern. I love (really dont love at all) this part, being my own advocate, spending hours on the phone, never knowing what to do, wishing a dr would treat ALL of me, wishing insurance would let them even if they knew how. So someone will call me tomorrow.

Its a good thing I’m not working because its a full time job being this sick

Steps I’ve taken to get better sleep

I’ve really not had a good night’s sleep ever in my life. Let that sink in a minute and you’ll I must be exaggerating or what does she mean, she’d be really unhealthy!

I am not exaggerating and I am really unhealthy. I’ve described before reasons I couldn’t sleep, so I’ll just list a quick reminder here:

childhood – asthma, bedwetting, afraid of the dark, no bedtime/no routine/neglect, chronic bronchitis/fevers/coughing, oh and of course the nearly nightly sexual abuse from AF that eventually made me try to stay awake all night every night to stop because the coward always came in my room once I was asleep

adolescence – spinal cord injury caused back pain, leg pain and twitching, constant waking up to roll over, nightmares, still staying up all night and napping after school when AF was at work, homework

adulthood – I continued this pattern for 20 years, grabbing sleep when I can, afraid to sleep, waking up in terror whenever Hubby moves or makes a sound in the bed next to me

Better Sleep Steps:

  1. Gabapentin – I was prescribed this miracle drugs for the migraines, which it did not help, but it stopped the burning crushing pain in my spine and the constant twitching that was keeping me awake. I have to take so much that I’m a bit dopey and blurred vision, trying to find the balance here. For now, I think the sleep is more important, such a new thing for me, and an unexpected side effect. I’m not sleeping all day on this drug either, just at night.
  2. Zonegran – another anticonvulsant. It does nothing for nerve pain in my spinal cord, I tried reducing gabapentin and sci pain came back with a vengeance. I was stunned to think that was the pain I had been living with, no wonder I had to go numb. Apparently though the zonegran either makes me sleepy or helps my sleep cycle, because I crash soon after taking it each night and don’t wake up until 6 hours later. A straight 6. wow thats impressive. The first few times it happened I was freaked out. I put my head down, and next thing I knew birds were singing. I never had time disappear like that unless I had surgery or something, and I didn’t feel too groggy, just confused. My brain wasn’t sure what had happened, I usually am aware of every night passing, all night long I hear every noise, I drift in and out of sleep, I have multiple dreams and nightmares. I didn’t even dream that I could recall. Once I got over the weirdness, I realized that this is probably what sleep is actually supposed to be like. I started asking people. OK, I don’t have people. I started googling. Turns out sleep and dreams should not be remembered, kinda the point of it, to turn OFF your brain and let you rest.
  3. Vitamin D – my vitamin D levels had plummeted to critical last spring at 11, and after months of supplements got it up to 25. Dr decided to double my supplement. Target range for ideal sleep is 60-80 according to current research, but many doctors seems to disagree on this, and the exact number will vary on each person. vitamin D is not a vitamin, it actually functions as a hormone in the body, more like thyroid. Please see this link to Dr. Gominak’s site I found, and why I’m choosing to take OTC D3 and prescribed D2. My doctor gave me the ok on this and the right dosage for me. Please know that vitamin D supplements are fat soluble meaning you can take too much if not careful it can be toxic, so just because its OTC and made by the sun you can’t take it willy nilly all at once to get your levels up quickly, it takes a while to deplete and it takes a while to restore. Patience grasshopper. Vitamin D, Pain, Sleep Disorders
  4. Magnesium – This goes along with the vitamin D, it prevents hypercalcemia while supplementing which is the biggest toxicity concern of taking large doses of vitamin D. It also is a calcium channel blocker to prevent migraines, and reduces muscle tension. Again I have a dosage prescribed to me by my doctor.
  5. I sleep alone now- Sorry Hubby. I don’t know how long this will be. I think it will be forever because I can’t see a way to fix it and damn now that I know what it is like to sleep I am guarding this like fort knoxx. I’ve been sleeping downstairs in the recliner so no triggering noises or bumps in the night startle me to panic. If the kids or dogs wake me I am fine. But if Hubby does it, my sleepy brain must think it is AF and it is instant terror every time. I’ve dealt with this our entire marriage and each time I think Hubby understands, he forgets and grabs me and I scream. I’ve asked Hubby to not wake me any more himself, but if he must, then to do it by talking, saying something like, “good morning” from the other side of the room, not hovering over me, and not touching me at all while I am asleep. It makes him sad and feel rejected, and I am sad for him, but I for once in my life I am doing what I need to heal and take care of me and feel safe. It didn’t matter before, I wouldn’t have slept anyway. But now that I can, I’m not going to sacrifice it by pushing the panic button needlessly. Maybe one day a therapist can ‘fix’ this. But I honestly don’t think so, not after so many years of AF attacking me in my sleep, and I honestly have no desire to fix it if all I have to do is sleep alone. It already seems fixed. Done, problem solved, hallelujah its a freaking miracle I can freaking sleep at all. I have no desire to cuddle while I sleep, I never have. We make the kids sleep alone, why can’t Hubby? Why does he continue to make me feel bad about this? Sorry, I didn’t mean for the marriage issues to sneak into this post.

Migraine system overload

I seem to have an emergency stop button, instead of staples big red easy button somewhere in my brain I have a kill switch. With very little warning, other than sudden extreme fatigue, and a sense of complete overwhelm and being unable to make a  simple decision ,(like what sounds good for dinner) my brain ceases to function. I get so sleepy I go find the nearest spot to lay down.

Today I did not sleep as long, maybe an hour, but still awoke with right side pain, twitches and weakness. All minor in comparison to what it could be. Took some motrin, aspirin and coffee and rubbed my arm.

This attack was not accompanied by any memories or flashbacks. Prior to the overwhelm feeling, I was planning my schedule and looking at the calendar for the next few weeks. The PTSD intensive therapy program finally has an opening and I was figuring out how to get there and have kids taken care of. This program is going to be 9 hrs a week of therapy, plus nearly 6 hrs of driving there and back. Lots to arrange.

And then kiddos have social events on the calendar, other sports stuff, dentists, and then oh wow school will be starting….

I only had one underlying thought. I can’t. What if I can’t keep up. I can’t do all of this. They need me too much. How can I go and be all vulnerable and wiped out in intensive therapy and have anything left for my kids?

I’m not enough. I already feel empty.

Then hubby said to everyone we were going out to eat. Kids said yay!  I couldn’t see how I could possibly brush my hair I was so tired, just had to lay down.

Can these negative thoughts trigger a migraine ? I was out instantly. I woke up to hubby making dinner in the kitchen and a very grumpy kiddo giving me some guilt.

Hubby and I seem to tease and torment kiddos, never being connected or on same page. I wish he could see the migraine coming on and didn’t announce to kiddos about dinner. We did have a teachable moment about not always getting what you want or expect and how to handle disappointment… But it didn’t change how I felt inside, so stupid and weak.

What am I recovering from exactly

I’m supposedly in recovery right now. I just wish I knew from what exactly.

Although I had a suicidal ideation episode, I don’t think I’m in a major depressive episode right now. I can’t seem to get any 2 people to agree on this or a course of treatment. I don’t feel remarkably different from before I entered the hospital in April, although I do feel more in control, less reckless, but still quite hopeless, and it confuses me that these can coincide.

I am taking better care of my body, eating better, no alcohol, some exercise, getting outside, talking to friends more.

And yet the underlying thought remains – none of this matters, there is no point, no end to all this suffering, death would be welcome. But those thoughts aren’t desperate, aren’t powerful, but they seem to be at my core whenever I sit quietly and look inside. Whenever I ask myself what I want, that is the answer I get.

Last week, I found a newspaper in my closet from my high school, announcing my graduation. I was on the front page of this newspaper along with 5 other smartypants’es. We were the top 6 scholars, I tied for 4th place out of many hundreds graduating and had earned a hefty scholarship. I cried when I saw that photo of me.

I remember being that girl. I remember working so hard to earn my ticket out of hell. Ever since 6th grade when my big brother left for college, I was determined to do the same. I did everything they told me to do. I joined every club, art, band. I volunteered with Kiwanis, at Red Cross, at the hospital, at nursing homes. I worked 2 jobs. I took AP classes and college classes at the local college instead of at my HS. I had perfect grades, overloaded credits, overloaded life. I also had mono, an ulcer, anorexia, migraines, back spasms and weak limpy leg, insomnia, chronic bronchitis and asthma, and a really fucked up home life that I did everything possible to avoid going home. But I did it, I earned my ticket, I got out.

But I soon found out, as you all already know, hell follows you. There is no getting out. It doesn’t matter where you are, the demons will find you.

Here I am 20 years later still wanting to get out of hell. 20 years of hiding from, battling, ignoring, and thinking I had defeated those demons, or enough of them. Were the demons hiding or was I?

Or am I simply battling a horrific neurological disease, isn’t hemiplegic migraines bad enough, and this current suffering has nothing to do with my past abuse? Am I going to counseling and being treated for PTSD for what is actually a physical problem? But would I have this disease without the PTSD? No one knows. As with psychology, neurology is a load of guesswork as the brain is far too complicated for us to understand yet.

All I know is I am physically miserable most of the time. My emotions do go crazy all over the place when the flashbacks/memories flood in with the migraines. Otherwise I am fairly stable unless provoked/triggered. I am definitely edgy and worn out, my patience and stress tolerance is kinda nonexistent. How does a mom get to rest while kids are home over the summer? exactly, she doesn’t. So I’m doing the best I can to keep going with no energy and no chance to recharge.

I don’t know how to recover because I don’t even know what I’m recovering from.

I’m in all of these seemingly impossible situations, with no energy, no motivation, and I honestly just don’t want to work so hard any more. I just want to close my eyes and stop thinking and feeling and let it all disappear.

I feel pathetic, weak, and unreliable.

I know I’ll get through this, somehow, someday, but the frustration is turning into anger and I’ve run out of coping skills since these damn migraines have taken away all my usual stress relievers and turned them into stressors or impossibilities.

Any suggestions for something else to get rid of this anger? Writing only helps a little, and this post took me 3 hours with my stupid head and eyes and makes me angrier sometimes.

Managing

Life feels manageable now, and even enjoyable. I’m getting more energy back each day, more motivation to do what needs done without everything seeming so difficult. Even spraining my ankle and requiring crutches was manageable, (yes completely annoying, frustrating, and I didn’t handle it well the first day or two) setback.

I’ve taken back the bits of chores from hubby that I can manage, started driving my own butt and kids places again, and I’m completely and totally MOM again. I realized I hadn’t been MOM for quite a while, and while that saddens me, all I can do is repair bridges and march forward. By the amounts of hugs, smiles, and stories I am getting, they needed my attention and stored it up for me, and it seems to be balancing out now. It was overwhelming at first to me, but I didn’t retreat, instead I let it wash over me, like taking a shower in a waterfall.

I’m no longer traumatized by touches and affection from my kids, and actually enjoying some snuggle time. I’m so relieved that has passed, it was dreadful being afraid and jumpy when my 7 year old wants a hug. I don’t think anyone, any med, or any hospital actual helped me with that, it was just time to allow my overstressed nerves to heal, I think. Also, I have limited other social stresses by creating more safe boundaries for myself. I have a no call/no email boundary with my mom in place for the current time until I decide if that can ever be lifted. I have a no touch boundary in place for my husband. All of this is giving me space and room to relax.

I have more patience with kids now, even though we’re together nearly all of the time during summer break now. All of us worked together to bake a cake for youngest’s birthday, and it was so much fun. I didn’t have to squeeze it in between meetings and reports, the entire day was just about them. Now the party today is a different story, and I don’t think I will be attending it, sadly. It is at one of those obnoxious places with games, laser tag, bungee jumps, you name it they have it and everything beeps or whoops and blinks or strobes. A migraine nightmare. Kiddo doesn’t need me there, he’ll be busy with games and friends. I’ll be here when he comes home and he can tell me all about while I’m migraine free, rather than me suffer through it and spend the next 4 days in bed.

So Many Mistakes, so much stress

So I’m here trying to feel grateful and not overwhelmed but really on that line still. Mostly now thinking how did I get here? What the hell happened the past 3 months, 6 months, a year??  Looking back I see I made a few mistakes, and allowed my stress levels to get too high.

Mistake 1 – Having no social support network and only trusting Hubby to judge my own stress and distress. Truth is, Hubby is not a strong, safe shoulder for me. My fears and doubts are met with either blank stares, his own fears, or anger. And yet I continually ask this of him year after year and expect him to be better THIS time. I keep hoping he will change. I have FINALLY learned this lesson and the need to expand my support network, to trust myself more, and to get more than Hubby’s opinion and help.

It was unfortunate timing that my trusted counselor of over a decade took an extended leave of absence during such a stressful period for me. I started working full time at a stressful new position, struggled with workplace drama hostility and ethics, then AF died and I didn’t know then the impact all this stress would have on my health.

I had no idea how to handle AF’s death. The man that was my entire world as a child, even though it was a wicked and twisted world, was gone. He was the one I called daddy for so many years. I discussed his passing, and his final attack in his will with the interim counselor, but I had never connected with her, and she didn’t lead me through any grieving process. I had no healthy way to process it on my own. No one around me thought it was worth discussing much, or knew what to say, or what to expect in how it could affect me. Even worse, I hid it from coworkers since I was not attending the funeral and didn’t want days off or to discuss it. So I got no sympathy, had to focus my wandering mind, got no flowers, nothing.

I should have given myself some time off, but I didn’t know then because I didn’t feel it then. I still felt ashamed, I didn’t want to burden anyone with my problems. I still thought AF was my terrible secret, all my own. His death stirred up all that in me initially, all those feelings of I must hide, and isolate, that I’d lose everything if they knew. And since Hubby and in-laws were so callous about it, and my FOO was useless as usual, I alone as usual. So completely alone. And then that terrible Will, where AF was so cruel again, and it hurt, and I felt it ‘shouldn’t’ and then felt guilty for it hurting. I should have maybe gotten a message to my counselor, I know now she would have talked to me, but I did what came naturally and started my self harm cycle of binge eating, not sleeping, isolating, and self loathing. Odd how the self harm is part of my self comforting cycle, when I’m hurting I need to hurt myself more. Where’s all that progress I supposedly had made? All of it gone because my counselor wasn’t there to help me? I felt like no one was there to help me and I kept saying how much it hurt, kept reaching out this time, but it didn’t matter, no one understood. I needed my counselor I guess. When I finally saw her in March, she saw the pain, all the weight gain, and had me sign a safety contract, she saw I was in crisis. That I needed a break. She recommended a weekend away. It was good, but too little too late. I should have done it months earlier.

I remember one terrible day of head pain 2 months ago, intense memories/flashbacks to daddy holding me tenderly enclosed in his arms, when I felt safe in his arms as I curled up in a ball and fit completely on his lap, I actually felt his warm arms around me, I heard his voice, felt his head on top of mine. It was a wonderful moment frozen in time, but then I also know his hands are caressing me, slowly in ways a daddy should not. The me I am now returns to present day and feels nauseous, the moment is over, and I’m so confused, like a short circuit, I miss that wonderful disgusting man. That is when I started to cry and could not stop. and the memories flooded in, but even more, the sadness. Oh my god the sadness. I thought my head would split open from the force of the tears and the sadness, and the guilt, and the shame.I had several events like this, each more powerful than the last. I called and made an appointment with a psychiatrist but it was weeks away, so was my next counselor appointment. I could not bear another flashback/migraine/grief/shame attack. I started drinking more and more. I was getting so on edge I couldn’t stay in the room with anyone else. My kids faces looked like a young me and triggered new flashbacks. I avoided them. I started my combo of drinking and cold meds to put me out, and this time I had muscle relaxers to add to the mix from the migraines. Those only gave temporary relief as I woke up more desperate each time looking for something stronger. I just wanted to stop thinking, not actually to die. I remembered something about robotripping and looked up dosages. I had half a bottle of dextromorphan added to my muscle relaxer/whiskey/tylenol cocktail one night. I think I already wrote about this, but I’m writing again anyway because it was so stupid. I blacked out and vomited and fell asleep in my toilet.

I could have died from that stupidity. I didn’t. And not because life has more torture for me, but because my liver did its job. And because we don’t know why things happen. Maybe the second I accept life and stop wishing for death a toilet seat will fall from the space station and kill me in a freak accident. We don’t know. I won’t fill this page with dishonest gratitude either that I’m still living. I’m not yet in a positive place so that wouldn’t be right. But you can all think that for me, no harm there. And all you lucky enough to believe in God to can say its part of his plan for me, no harm for you to think that either.

So – I quit my job, no notice. Just ‘sorry, I quit, effective immediately’. I asked Hubby and he agreed I should quit. I debated telling them I was struggling with migraines, and asking for medical leave. But Hubby and I decided this was best. We also decided it was best because we were planning to take me to the hospital.

I need to clear something up here. I never actually attempted suicide this time. I went to the hospital because I was so afraid that I might. I was still completely rational upon admittance. I even planned the admittance, it wasn’t an emergency trip or anything. I wanted to see if they could help stop the flashbacks and the sadness and the suicidal fears. When I saw that I was only able to work 5 hours the previous week due to migraines. When I realized I was spending most of my time in bed in a dark quiet room and would be unable to work the following week either, I felt like such a failure that I couldn’t even work part time now and find another job appropriately. Flashbacks were nearly constant, seeing anything, feeling anything – could trigger reliving long intense moments of my childhood. The strange part of these flashbacks is that many of them were not frightening, and did not leave me feeling afraid, they left me feeling sad – purely sad, sadder than I’ve ever known possible to feel.

I pushed too far and I broke. My body could not withstand those levels of stress and I was putting my trust in doctors to help me heal, to get some needed rest from the torture of my own brain.