I feel shame (Shame and Chronic Illness)

I’ve been trying to write a post for weeks now, but I just haven’t been able to get the words to come out. I had a CTA scan of my head and neck on July 26th, that’s a CT scan that shows your arteries. I had planned to post about it, to show you the awful bruise the contrast caused, and tell you how I freaked out when the contrast hit me, but I was actually ashamed that I felt that way. They had a hard time finding my veins, as usual, and I, once again, felt ashamed that I’m difficult. I had a bit of a reaction to the contrast and had a very debilitating migraine and nausea for days. I couldn’t write, I couldn’t do anything. Lorraine was nice enough to do a Mindfulness Monday. I’m ashamed I haven’t written since then.

I feel that I have needed to write and tell you how I’m still struggling with the migraines, how the medication isn’t working, and how I can’t accomplish anything really. But I’m ashamed that I’m not better. I’m ashamed that I keep trying different medications and they don’t work on me. I feel like I’m failing. In our culture we are expected to take a drug when we get sick and get better, if we don’t get better then we aren’t trying hard enough. We should change our diet, exercise more…. You see the stories all the time, how someone beat this or that disease by doing these things. We are expected to fight our illnesses and get better, when we don’t we often feel shame. Or at least, I know I do.

With my migraines everyone has a solution. So many people have or know someone with migraine, it isn’t rare, but chances are it’s episodic migraine not chronic migraine. I’m asked so often, “Do you take medication?” and it’s followed by, “I take (or so and so takes)______ and it works!” I want to scream, “Of course I take medication! I take preventatives, and abortives, and supplements, and I use alternative treatments! Nothing is working but I’m afraid to stop any of them for fear it will get worse!” But instead I feel ashamed that I’m defective. Not only do I have migraines, I have migraines that won’t respond to treatment.

Weekend before last we went out for breakfast with Stuart’s father at our usual place. I ordered a gluten free pancake, when it came I suspected it was wrong, but they have never gotten my order wrong before, so I took a bite. I knew immediately it was wrong. I was poisoned. I called the waitress over and asked and sure enough, it wasn’t gluten free. She apologized and I smiled and just ordered a new one. I looked at Stuart with huge eyes and he just said, there was nothing that could be done now. His father said, “it was only one bite” Stuart explained that it only takes a crumb. I should have told the waitress that I didn’t want anything else and told Stuart and his dad we needed to go home, but instead I was too ashamed. I ate that new pancake knowing that I would be sick within an hour or two. I sat there listening to them talk, while my head pounded, my stomach started to ache and get tight and my bowels started to rumble. I ended up having to rush to the bathroom there and it was obvious my stomach was distended by the time we left. I felt even more shame that I could not hide it.

I’ve never been one who is ashamed of my cochlear implants, I know a lot of people like to hide them, but I like for people to understand that I have hearing loss, because I do get ashamed when I have trouble understanding people. I sit and “listen” to conversations, but I often don’t “hear” them, and I’m too ashamed to keep asking for people to repeat what they say. After you are told over and over that it’s not important, you start to believe it, so I don’t worry about it. Then I get more ashamed when I miss things that I needed to hear.

Yesterday I had a very bad day. I woke in so much pain, but more than that when I’d stand I would see stars and I’d start to black out. I asked Stuart if he could work from home, but before he could answer I told him no, I’d be okay, because I was way too ashamed that I needed him. I was not safe, but I was too ashamed to admit that. Last night was the first time I told him how I felt. Now he is afraid he has done something to make me feel ashamed, and I feel shame that I’ve made him feel this way. I’ve explained to him that it’s complicated.

I’m just coming to terms with these feelings. I’ve tried to put a label on this before and called it guilt, but that wasn’t right, it’s shame. Guilt is feeling that you’ve done something bad. Shame is feeling that you are something bad. So, yes I feel guilty about asking him to work from home because I don’t want to take him away from work (doing something bad), but I also feel shame about it because I am ill and have to ask in the first place (am something bad).

Do you have these feelings? This will be a major discussion coming up with my therapist. Shame is not a healthy emotion, this is something we need to battle sooner rather than later.

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Mindfulness Monday: reminiscence

Wendy hoped to post but her migraine monster had other ideas.
So, I am reprising my role as guest host for a Mindfulness Monday post.
Sharing familiar, favourite quotes:

“Be mindful even if your mind is full.”
James de la Vega

“Don’t cry because it’s over, smile because it happened.”
Dr. Seuss

“Mindfulness isn’t difficult, we just need to remember to do it.”
Sharon Salzberg

And, for Wendy, by James Baraz::

“Mindfulness is simply being aware of what is happening right now without wishing it were different; enjoying the pleasant without holding on when it changes (which it will); being with the unpleasant without fearing it will always be this way (which it won’t).”

photographs: by Lorraine (Please don’t use without her permission).

The Fight Continues

After a 76 day migraine it finally broke on July 6th, I then went 9 days with 2 migraines that were able to be treated with rescue medications. On Monday I posted about how I believed I was back to my baseline, but I mentioned that I had a migraine at the time and was excited I was able to take rescue meds and believed they would work, they didn’t.

can you see how the right side of my face is affected by my migraine?

On Monday I took Maxalt twice, and Toradol, it eased the pain some, but did not take it away.

On Tuesday I did not use my rescue meds, I used Ginger, my IceKap, and medical marijuana throughout the day, and this kept things to a tolerable level.

I woke Wednesday in excruciating pain, with severe light sensitivity and vertigo. I could not lift my head, or focus enough even read medicine bottles, but I could find the Maxalt in my night stand by feel, so I took that. I texted Stuart by talk to text and asked him to come home to help, because I couldn’t make it to the bathroom. He came home, got me more meds (Toradol, and another Maxalt) and worked from home for the rest of the day. I also used my alternative therapies throughout the day. Wednesday was a very challenging day, but by the end of the day my symptoms had improved dramatically and I was able to sleep.

Yesterday I woke feeling pretty good, the migraine was still there, but I thought it was on the way out. I decided to greet the day with joy and immerse myself in the pool. I had a nice swim, the water always makes me feel better, but I don’t get out there enough. When I came in, the pain started to increase. Then a little while later I stood up, walked across the room, and the pain hit like a hammer, I felt a whoosh, and the room went black. I slowly collapsed to the floor and spent the rest of the day in my chair fighting vertigo. I decided to break the rules and use a rescue medication a third day this week. My doctor had given me a sample of Migranal to try, it’s dihydroergotamine mesylate (DHE) in a nasal spray. I haven’t tried it yet because my insurance doesn’t cover it, but thought I should try it since I’ll be seeing her on the 26th and today would be a good trial. I don’t know if it’s just the sample that’s like this, or if it’s always like this, but this stuff is a pain to get started. You have to break a metal seal on the bottle, pull the plastic stopper out, take the plastic cover off of the sprayer, insert the sprayer in the bottle, prime the sprayer 4 times, THEN you are finally ready to use it. Then you spray it once in each nostril, and do not sniff or tilt your head back (that is oh so difficult) and repeat in 15 minutes. That’s a lot when you are in severe pain with light sensitivity, nausea, and vertigo. It did reduce the pain significantly, however it did not completely break the migraine.

That brings us to today. It’s still there. I’m getting a massage tomorrow from an amazing woman, the last time I saw her I left in the least amount of pain I can remember. It didn’t last long, but wow, amazing. I look forward to feeling her magic.

On the 26th I’m getting a CTA or my head, that’s a CT scan where they use a contrast to look at your arteries. I also see my migraine doc on that day. I don’t think the scan will show anything, but just to be sure. I’m a little wary of it, I’ve had a lot of scans over the last 10 years, that’s a LOT of radiation. How much it too much? Since I can’t have MRIs they use CT scans for everything, that has really been a lot of CT scans.

I am so very grateful for the days I had without a migraine, it is encouraging to know it is possible. I’m also encouraged that the rescue medications are doing something, even if they aren’t taking it all away this week. Living with chronic migraine is a challenge every day, I never know what to expect. I found myself leaving the moment, fearing the future, longing for the past, I am being gentler with myself now, and being here in the now. Today is all I have, I will be here in this moment and accept it as it is. I know I can handle this moment, it is all it is, a moment, and I will deal with the next moment as it comes, not before. There is so much more to my life than my symptoms, it is time to remember that and take notice, each and every day.

Relief. The Importance of Keeping a Medication Diary

Tucson night sky

If you’ve been following my blog you know that I’ve been battling a severe migraine flare since April 20th, I’m so happy to share that I’m finally back to my baseline for my migraines and my rescue medications are once again working so I’m having sweet, sweet relief!! How did this come about? Well let me tell you, this was an ordeal! And it could probably have been sorted sooner if I had noticed something earlier, in the end, I’m glad I wrote about when I started new medications here.

One of the first things I did when all of this started was try to figure out if I anything had changed, had I started a new medication, was I eating differently, sleeping differently….anything? Well I had started Emgality, a migraine preventative, but I started it a month before this started and I was insured that it would not cause migraines. I had also started Viibryd, an antidepressant, but I (thought) I started it in March. Finally after my hospital stay in June, I went through my blog posts and found this post on April 27th that said I started an antidepressant the week before. https://picnicwithants.com/2019/04/27/little-update-from-travels-to-depression/ That was the week the intractable migraine started. The post also talks about how much better my migraines were in March after I started Emgality on February 28th. Ding! Ding! Ding! Could it be that this drug was contributing to this migraine flare? I was going to find out! I looked up the side effects for Viibryd and sure enough, one of the common side effects is “headache” (15%) and one of the lesser side effects is “migraine”. I put a call in to my psychiatrist and a message in to my migraine doctor. Wouldn’t you know it, my psychiatrist was out of the country! Ha! Glad to know my doctors had a good time traveling this summer! So, everyone knows what I did with my migraine doctor, if you missed it, you can check out my post on SPG Blocks here, but keep in mind that I was still on the Viibryd at the time. I got a message from my psychiatrist PA and they said that migraine wasn’t a side effect of Viibryd (Can you see me rolling my eyes?? I read the prescribing information handout that comes from the manufacturer, where did she get her information?) In the call I’d also asked about a couple of other antidepressants that are used at migraine preventatives to see what they thought, I was told that they didn’t go with Viibryd. Umm, I’m not going to stay on Viibryd! But she couldn’t seem to understand that. I can’t say it is all her fault, the front office there is awful! I love my psychiatrist, but it is horrible to try to get messages through, so I decided to slowly taper off of it by myself, and just wait for my appointment which is next week to discuss the rest. And guess what?! After being totally off Viibryd for about a week my migraines dropped to about my baseline, or below.

Since my birthday, I’ve taken a rescue medication once! Don’t get me wrong, I have had more than one migraine, but they haven’t been severe and I haven’t felt the need to take medication for them. At the first sign of a migraine I’ve been taking 500mg of Ginger and it has been helping (this is a great article about the efficacy of ginger in helping migraines). As I’ve mentioned before, I can’t take rescue meds more than 2 days a week, so unless a migraine is bad I normally don’t take it since I often have migraines an average of 5 – 6 days a week. I save those 2 days for days I have something planned, or days when it is very severe.

I just noticed that today is the 15th and I haven’t taken migraine meds since the 5th! Wow! Perhaps the Emgality is doing something too? I’m really thinking that the Viibryd was messing me up big time. And so far I haven’t noticed my moods dropping since I’ve been off of it. You know, I’ve been fighting a migraine today, but I think I’m going to take something for it. This is great! Maybe I won’t have to save my medication for worse days? Do I dare hope?

To close I’d just like to say that this has taught me to always mark on my calendar when I start and stop medications, and pay close attention to how my body changes. I really thought I was on top of these things, but obviously it can slip by you, especially during busy times and times of high stress. If I had been able to put together that this had been a side effect earlier I might not have suffered for so long.

The Problem With Basing Self Worth On Productivity – Guest Post by Christina Wiebe

Today I’m thrilled to share with you a post from a dear friend of mine, Christina Wiebe. I met Christina a few years ago while we were both contributing to a Chronic Pain and Illness Photo Project on Facebook. She is an amazing woman who happens to have Central Sensitivity Syndrome, and was just recently crowned Mrs, Vancouver Island 2019 – 2020. A few days ago she posted something on Instagram I wanted to share with all of you, so without further ado, I had this over to her. You can find Christina on Instagram @phoenixrisingstories.

“How do you know that you have self worth?”

When a solid thirty seconds elapsed and still no coherent answer came to my mind, I knew that I had work to do. Whether or not this was going to be a potential interview question asked of me as a contestant in the 2019 Miss BC Pageant (hosted in British Columbia, Canada), it was clear to me that beyond being able to confidently answer an interview question, I needed to be able to answer this question for myself. Why? Because I knew that for the rest of my life, it would be impossible for me to feel confident, empowered, and like I have the right to use my voice to effect meaningful change if I did not believe that I was worthy of being there in the first place.

As I approached what would be the most challenging, terrifying, intense, and overwhelming weekend of my life as someone who has been very sick and debilitated by Central Sensitivity Syndrome for many years, it dawned on me that after years of isolation, being predominantly housebound, and not doing anything our society sees to be traditionally productive and valuable (like pursuing a successful career, traveling around the world and doing volunteer work, raising a family, achieving higher education and so on) I was suddenly going to be in a room with 50+ women who were all doing these amazing things while I was lying in bed contending with symptoms. (Yes, I know I should not compare but I am human and the thought naturally crossed my mind. The point is not that I compared, the point is the action I chose to take as a result of it).

It brought to the forefront this concept and question of Self Worth. How did I know that I still have self worth? How could I possibly stand beside these women and still feel like I was enough? What is self worth? Where does it come from? How does our society, environment, upbringing, and social conditioning all influence how we perceive our self worth and value as human beings?

I had to look back on my life and where it seemed like I was deriving my self worth from and what that moment of my 2014 Big Crash (becoming fully debilitated by the chronic disease and losing everything that I was working for in my life) taught me. I remembered the identity crises I went through when I lost my ability to work, take care of myself, take care of others, volunteer, and simply be a productive member of society. I felt WORTHLESS. In the eyes of what this world had taught me, I had no value. My life had no value. I could do nothing and so I was worth nothing. That feeling threatened my life many times over.

And that is when I realized – so many of us tie our SELF WORTH and VALUE to our level of PRODUCTIVITY. We internalize this message that to be deemed as worthy, we must DO THINGS in order to feel like we are worth something. We must achieve enough in order to feel like we are enough. And the fallacy of this is that if our self worth and value depends on being productive, we will NEVER feel enough and thus we will never feel fully worthy. 

Allow me to share with you the rapid, unedited stream of thoughts that flowed out of me one morning:

June 13, 2019

So the logic behind it is…by definition, productivity requires continuous action in order to achieve an even better and even better and even better result. To stop altogether would be considered zero productivity. I think as we grow up, the true meaning of self worth is obscured. We grow to associate self worth with productivity. Being better, doing better, having more. Which is the foundation for why there’s even the phenomenon of the rat race that we’re all trapped in. 

To break free from that rat race requires understanding that self worth doesn’t come from anything that we’re striving for or have set as goals. When we’re born, we’re born worthy. We’re already born with intrinsic self worth.

When a baby is born, we don’t see it as worthless. We innately feel like this newborn is precious and of immense, immeasurable value to us. Why? It’s literally not doing anything that we as older human beings consider to be necessary for feeling valued and worthy. The baby does nothing but exist and yet it’s of value. 

We all start out like that. We are all born worthy and valuable. The only difference is that this knowledge is obscured by social conditioning and thinking patterns that have been passed down but not questioned and therefore not dismantled as they need to be. 

The baby has infinite potential, that’s why we as adults value it so much. In that pure, untouched state, we can see that boundless potential. And then we forget and it gets obscured the older the baby (and thus ourselves) gets. But that infinite potential and value we’re born with doesn’t go anywhere as we get older; it doesn’t lessen, it doesn’t increase. It’s constant in its infinity. But like I said, it becomes obscured by all the distractions and false truths that this world inundates us with the more we’re exposed to it.

And going back to the question of “how do you know you’re enough?” – I said that when we’re born, we’re born already enough. But it’s profitable in a capitalist society to feed people the lie that they are not enough in some way. Creating this feeling of lack generates this need to then fill ourselves so we don’t feel like we’re lacking something. So we pursue things, we aim to be productive, we buy things, we pay for services that make us feel like we’re moving forward and getting closer to making ourselves feel like we’re enough. 

We’re in this world that’s telling us we’re not enough. We’re believing we’re not enough. We’re acting in ways to remedy this feeling of not being enough. And if we believe we’re not enough, then we believe we’re not fully self worthy. Because at the foundation of feeling like you lack self worth is the belief that in some way, you’re not enough.

All this to say, imagine what this world could be if we never forgot that from the moment we’re born, we’re born worthy, we’re born being enough, we’re born with endless potential? We then wouldn’t fall into the traps of doing things that keep us thinking and being smaller than we intrinsically are. We wouldn’t care so much or be motivated so much about the grades, the resume, the job, the salary. We would be free to really live out our higher purposes, to not act in order to obtain wealth and material things. We wouldn’t act because we feel the need to in order to prove ourselves (eg, feel the need to work so hard and appear so busy to gain respect in the community). We’d already know that we are enough just as we are, which then frees us to act simply because it creates joy. 

Any resistance we feel to fully accepting this truth is a result of our human nature. We don’t like change, accepting this requires us changing our whole belief system and how we view life, the purpose of life, and how our world has been constructed. 

It creates a subconscious fear: to fathom that we are infinite potential makes us fearful because we then have to let go of everything we know and every way we’ve been operating up to this point. And it’s kind of like what was said in the movie The Matrix: most people wouldn’t leave the Matrix if they had a choice. It’s comfortable being in the rat race because it’s what we know. 

But what we know is wrong. It’s time to change this mindset. It’s time to reclaim the truth that we are ENOUGH right now. We are WORTHY right now. Period. 

Christina Wiebe Mrs. Vancouver Island 2019

Birthday Wishes Do Come True! A Little Migraine Relief

Being silly with my man.

Yesterday was my birthday, and I was able to enjoy it! Squeee!!

Today I’m fighting hard but I wanted to get this out so I’m going to just write, I wrote the first sentence this morning and then I just stopped. “It hurts so bad right now, where do I even start this post?” Then I went on Instagram and saw people sending love and telling me how thrilled they were that I was able to enjoy my day. It really looks like I was having a pain free day doesn’t it? The pain is there, but it is much less and I am having a very good time with that amazing man who took the day off work just to spend the day with me. How did I get there?

Right before I saw the doctor on the 18th I reviewed my migraine diary and my blog posts and discovered that my migraines not only increased but the Maxalt stopped working right about the same time that I started the Viibryd. I had the dates a little off in my memory, but there it was all written down. So I’ve been gradually going off of it and this past week was the first week I’ve been completely off of it. It has not been an amazing change, but the one thing that has changed, Maxalt is working again. That is why I was able to celebrate my birthday. If I take a Maxalt with a Toradol I get relief, it doesn’t knock it all the way out, and I have to take a second Maxalt, but it knocks it WAY down!! Not so far down that I can forget it, but I can breathe. I’ve only tried it 2 times so far, as you know you can’t take these meds too often, my doctor doesn’t want me to take pain medication more than 2 days per week. I tried it on Saturday because we had a picnic with the family, and it worked! I was even able to play with the kids for a little while. We were only there for a three of hours before I felt I needed to wrap it up, but that was a good 3 hours.

Yesterday I tried to start the day without meds, but I had to take them as soon as we got started. We went to the botanical gardens for breakfast, it was so nice there, they were so wonderful to cater my meal around my food restrictions. One of the coolest things I’ve ever seen happened, 2 wild lizards came up and begged for blueberries. The waitress fed one out of her hand, he took it and ran off. I put a blueberry right by my chair for the second and he came and gobbled it up and waited for more! Hahaha.

More blueberries please

After breakfast we strolled the garden for just a little while and then I had an appointment with my therapist. While there I had to take a second dose of medication, so we went home after and had a nice rest. Later we went out for a late lunch at this cute little place I like so much, that’s where the photo of us was taken, and the waiter there sang Happy Birthday to me over my chicken salad. 🤣

That must have been too much for me for one day because I can’t even remember the rest of the day, and today I’ve been in a huge amount of pain with lots of dizzies, but I think I’m learning how to cope with this better than I have been. I have not totally forgotten my mindfulness practice.

Now my mind must rest as I close my eyes for the day.

Me and My Migraine

TX360 nasal applicator for SPG blocks for headache disorders

I’m happy to say I was able to get into see my doctor on the 18th, I’m sorry to say I still have this migraine. I’m happy to say I have had some relief, I’m sorry to say it has been very short lived.

When I saw my doctor we started the SPG ( Sphenopalatine Ganglion) blocks. You can see the device in the photo above. When they first started doing these blocks the procedure was much more invasive, now I can do it by myself. I’ll show you:

First you get the anesthetic in the syringe
Then you put the device together and place it in your nose (note the long tube that is shown in the main photo is up in the device at this point, not up in my nose)
Fist you just let the plunger fall, that releases the little tubing, then you press the plunger end and that releases the medication, and that’s it. Then you repeat it on the other side.

For the sake of time and because I’m feeling mighty lazy and hurting, here’s a link to an article about how SPG blocks are supposed to work: Sphenopalatine Ganglion Blocks in Headache Disorders

To break this migraine flare that has been going on since April 20th, I am to do these blocks every day for 10 to 14 days. Today is day 9, I’ve had a few hours of relief, but that’s all. I feel that as soon as the anesthetic wears off the pain returns. Sometimes it is within a few minutes, sometimes I get an hour or two, but never longer than that. I had hoped that the time would build up and up as the treatment progressed, I’m losing that hope now. There have been times that the pain has been so severe that I have considered going back to the Emergency Department, but why? I know it would do no good.

This has become very hard to talk about. People ask me how I’m doing and I find myself lying. I don’t want to tell anyone that I’m still in so much pain. I don’t want to keep avoiding social activities. I’ve forced myself to do things, but I did have to excuse myself because I was getting too sick. I’m embarrassed. I know people do not understand. I know they are tired of hearing it. I’m tired of living it. I’m tired of saying it. I’m tired of hearing people say they are sorry. How long can they continue to feel bad for me. I don’t want pity. I know they can’t understand. If this is my new normal I will have to learn to live with it. I have to learn to push through it. To be able to say, “I’m fine” when people ask, and somehow mean it. I have to be able to put on the face and be okay with that. No one wants to be around someone who is consumed by pain all the time. How do I answer these questions? No I’m not better, but I’m okay…..some days, some days I’m not okay, but that’s okay too.

I can hear it….. It’s just a headache. Is she ever going to get better? Can’t she just take something? Why doesn’t she get a better doctor? She exaggerates. It can’t hurt THAT much. She’s ALWAYS sick. I’d do this or that if I were her….massage, integrative medicine, acupuncture, chiropractic, this or that supplement, this or that diet, this or that exercise, a certain pillow, essential oils, TMJ treatments….believe me I’ve tried so much my head spins from it all and I’m still considering more!!

Can you understand why I would lie about how I’m feeling? Why it’s getting so hard to talk about it? I am just so tired.

My Story – A trip to the Hospital – Migraine Awareness Month

We all have our story, this weekend I added to mine.

I’d like to give you a little bit of background on my headache story. Two months before I turned eleven I had my first period, and my first migraine. It was labled a “menstrual headache” and I was told most girls got them. On my 11th birthday we were going to the lake to go swimming and I was hit with a nagging headache, this headache never went away. I was labeled with allergies and sinus headaches. These labels stuck for many, many years. Now my migraines have progressed to the chronic level, I have a migraine over 20 days a month, and it seems they are becoming intractable. The medications I used to use are not longer working, and I’ve tried many alternative treatments. My daily headache is never below a 3. I also have cluster headaches that normally show themselves in the Spring and Fall, but sometimes more often. I haven’t found any treatments for the daily or cluster headaches. Most days I haven’t given up hope, but I must admit that some days I feel like I can’t go on. That is my history in a nutshell, now for the story of the weekend.

Today is the 54th day of a running migraine. There has been no relief. The pain has been variable anywhere from a 6 to a 10+ (there have been times the pain has been greater than I could imagine).. No medication has helped to relive my symptoms which include much more than pain. When most people think of a migraine they only think of the pain, but it is so much more than that, I experience numbness on the right side of my face, sometimes traveling down my arm, my face sometimes droops, my vision blurs and will double and dim to the point I can’t see, I have extreme light sensitivity, and sensitivity to smells and sounds,, I experience dizziness and vertigo that varies in intensity, and extreme nausea….these are just a sample of the added symptoms that I can experience during at migraine, others can experience different symptoms. Migraines are so much more than a headache they can even occur without any pain at all.

At present my neurologist is out the the country. I messaged her office last week and told them my situation and they suggested I go the the Emergency Department to get a “Migraine Cocktail” and some hydration. I voiced my concern about the torture that an emergency department can put me through, the bright lights, the smells, the noise, the wait….but I was assured if I called and reserved a time to come in I wouldn’t have to wait long. We did call and set up a time of 4:30pm on Thursday, I arrived 10 minutes early and was triaged right away, then I waited SIX hours before I was seen. I realize I was low on the triage list, and they had a number of emergencies but sitting there in extreme pain was absolute torture. I almost went home. I had a seizure in the waiting room and no one paid any attention. I do have to put in there that we were in a quiet waiting room with dim lights because of my light sensitivity, but after they were informed, a tech came and took my vitals, but no one else came. I decided it was time to leave. Stuart went to tell them we were leaving and at that time they realized how long we had been waiting, and they got me to the top of the list.

After I was taken to a room I was surrounded by extremely nice nurses and doctors immediately. They made a plan and had medication going within just less than an hour. The doctor told me they had to start on the first cocktail, but he didn’t think it would work on me, because he had a feeling I was a tough case. He said after that they would do a second cocktail and if that didn’t work they would admit me and there were all kinds of things they could do then. Neither of the first two cocktails worked, although the second one did help me sleep. I was admitted, after many hours of waiting for a room

I was started on a new cocktail that was very much like one that I had in the ED, but they wanted to add Imitrex (sumatriptan), I refused this medication because it causes me to have tachycardia. I soon saw the neurologist and he put me on a cocktail of DHE, Toradol, Depakote, and Magnesium every 8 hours for 24 hours. He then told me that if it did not work he could do no more and I would be sent home to suffer there instead of suffering in the hospital.

The cocktail knocked it down to a moderate level, until they stopped it. After they stopped it a new nurse came on duty who had a scent that triggered me. My migraine shot up and I was terribly sick. It did not come down, and I was sent home “to suffer”.

Today I woke up in intense pain that continued to build, within an hour it was so excruciating it was beyond what I could imagine a migraine could be. I was not sure if the pain would diminish. If it hadn’t I would not have been able to carry on. I had to admit my thoughts have gone there, but migraine can kill. All I can hear in my head is, “You can SUFFER at home”

My doctor is the only headache specialist in this area. According to the American Headache Society currently only 416 specialist are certified by the United Council for Neurologic Subspecialties (UCNS) to treat an estimated 36 million migraine sufferers over age 12 in the United States. I’m lucky to be able to see one, but when she is unavailable it is very difficult. She will be back in the office on the 12th, however she has jury duty the first week of July, I don’t have an appointment until July 26th. The doctor I saw in the hospital said he was going to talk to her office to see if he could get me an appointment earlier. I doubt that will happen.

There is a headache clinic at the Mayo Clinic in Phoenix. If my doctor can’t help me I’m considering going to the clinic for an evaluation It is 110 miles away. Does anyone have thoughts on this? I’ve heard some conflicting results from friends about their experiences with Mayo, I’d like to know if anyone has any thoughts.

This is Migraine Awareness month therefore, I’ll leave you with a few more facts about migraine.

  • Migraine is the 6th most disabling illness in the world
  • Migraine often runs in families.
  • Migraine is often misdiagnosed as tension or sinus headaches.
  • Migraine also affects children.
  • Pain does not have to be present during a migraine.
  • More than 4 million adults experience chronic migraine with over 15 migraines per month.

If you know someone with migraine, be gentle, try to understand, Sometimes it can change you. It can steal your life. It doesn’t mean they don’t want to spend time with you, often it means they can’t. They still love you. Love them.

Migraines Suck

Warning: this post may contain whining, feeling sorry for myself, and just plain complaining, but most of it is simply the way things are right now….it sucks, I accept that, but no I don’t like it and I wish it were different.

The last two weeks I have experienced some of the worst symptoms I can recall in many years. I woke up one day a couple of weeks ago now, feeling pain creeping up the left side of my head, it felt like my brain was hurting, inside my skull, my brain was being squeezed. It started on the left side and crept up over my head until it covered my whole brain, I could not help but cry out. I woke Stuart and he could only hold me. The intense feeling of motion, the pressure in my skull, the extreme nausea…it was horrible. Finally it eased to the point that I was able to simply pass out. Then it came back! This happened three more times. I decided sleep was not going to help, so I got up. It continued to happen throughout the day, no matter how much medication I took. Nothing worked. That was the beginning of my walk deeper into hell.

I’ve barely been out of the dark, the light sensitivity has been more intense than I’ve ever experienced it. Often I have not been able to get out of the dark at all. For days on end I couldn’t look at my phone or computer. I’ve been having the feeling of intense movement all day, with visual vertigo on and off. My vision will tilt, double, and is constantly blurry. For 2 solid days I could not focus enough to see much of anything, I just sat in my chair curled up in a ball, with sun glasses on, a towel on my head to further help block out light, an ice pack on top of that, staring at the TV watching shows that I’d seen over and over, just so I knew what was going on, since I couldn’t really focus enough to read the captions and often couldn’t even see what was going on at all. It’s bad enough to be in severe pain and dizzy, but to be forced to have nothing to distract you from that is torture. I tried to meditate, I tried to make up stories in my head, I tried to think of nice places, nothing worked. I was trapped sitting in a chair with my pain, confusion, and vertigo with nothing to help relieve it. I knew at that moment, if I had to live like this forever, I wanted to die.

I continue to fight this. My baseline headache never gets below a 5 now (I have daily headache all the time that normally hovers around a 3 or a 4). Every day the pain gets to at least an 8 for a few hours, and will spike to a 10 on and off. I continue to have all the other symptoms, sometimes they are worse than others, but they are always there. The nasal spray (Zomig) she gave me to try did not work. It’s kind of obvious that triptans have stopped working for some reason. I believe my head has gone crazy because it has gotten no relief. Normally I do get some relief from triptans, so the nerves have some time to reset, a little at least. (my 10 precious days a month when I can take meds gave me a few hours) Now there has been no relief so the nerves are constantly firing and just going crazy. My neurological and vestibular system are on over drive, what is triggering me this much, I have no idea, all I know is that my head is a mess, and I’m miserable.

Now my doctor is out of the country until June 12th, and she has jury duty the first week of July, so she had to reschedule my appointment to July 26th. I admit when I heard this I had a complete break down. I sobbed and sobbed, which of course caused more pain…ugh. But them I thought, I’ve lived with this for so long, a couple more months will not kill me, and I can go to the ER if I absolutely have to. I must admit though, I’m afraid to go to the ER, they treat migraine patients like drug seekers or fakers, the bright lights and noise there is torture, the stress of waiting hours….it makes me worse before they make it better. It’s so scary.

The good news is, her office did get the sphenopaltine ganglion block approved, so I will be getting that when I see her. It’s very interesting, she will actually be teaching me how to do it so I can do it at home. They are also working to get the Migranal approved, it is the Dihydroergotamine (DHE) in nasal spray. I have DHE injectables at home. I haven’t used it because you can’t use it in the same day that you use a triptan, and I had gone over the amount of days I can take meds for the month. When I’ve had intractable migraines in the past, not with the extreme symptoms I’ve been having lately, my previous doctor prescribed a DHE protocol of having 3 shots a day for 3 days to try to knock it out. We are going to start that today. Hopefully I’ll get some relief.

This has taken me two days to write and I’m sure it doesn’t read quite right because my brain is mush, and I know there are things I’ve left out, but I really tried. I even put in a couple of links. Woot!



Week and a day in review

I didn’t do it. I intended to do it. After I missed one day, I still thought I would do it, but didn’t write a single journal entry this past week. I’m such a slacker! I still kept up with my migraines on the Migraine Buddy app, so at least I have that information. Now let me share some of what’s been going on this past week.

On Saturday I had a vestibular migraine so debilitating that I could not walk without assistance. I stayed in a dim room (I really want black out curtains), in silence, with ice on my head all day. (The symptoms I was experiencing included vertigo and dizziness, light sensitivity, noise sensitivity, scent sensitivity, nausea, cognitive impairment, blurred vision, and numbness and drooping of the right side of my face. It was a cloudy icky day.  Finally around 8:30 that night it started to rain.  When the barometric pressure eased so did my migraine, just in time for bed.

On Sunday we went to have brunch with Stuart’s Dad and his wife at her home in memory care. It had been too long since we had been there for a visit, it was nice, but we sat in the little restaurant for way too long for my physical comfort level. By the time we left my back was hurting pretty bad, and I was starting to get pretty grumpy.  I had been feeling so much better since starting the new anti depressant, but Sunday I was touchy, sad, and down on myself. I knew I missed a dose on Friday, but dang. Then that night I realized I missed another dose, I was so angry and ashamed I couldn’t even look at Stuart. (overreacted?)  When I saw my psychiatrist on Tuesday I found out that the prescription she called in was for the wrong dosage, so for the last week I have been taking half the dose I was taking the week before. Oops. So no wonder it really messed me up when I missed a couple of doses!  I’m trying new strategies to remind myself to take my meds with breakfast!  So far so good!

Back to migraine talk. I mentioned in a previous post that I messaged my doctor and asked about a new rescue medication because the Maxalt isn’t working any more. I finally heard back from her, there was a problem with their patient portal, after it was fixed I heard from her right away and we’ve talked a couple of times since then, so I feel better about that. Here’s what’s going on there: She suggested one of two things, trying Zomig nasal spray (it is another triptan, but could help more in this form) or try Migranal nasal spray (it is DHE in nasal spray form). I’m trying the Zomig because my insurance will cover it (still cost a lot), my insurance will not cover the Migranal, however, if the Zomig does not work we will appeal to the insurance company to see if they will cover the Migranal. She is also trying to get another treatment approved, a Sphenopalatine Ganglion (SPG) Block. The SPG is a group of nerves linked to the trigeminal nerve, the main nerve involved in headache, and is located behind the nose. They use a catheter through the nose to apply lidocaine to the SPG. I’ve been reading about it, and I’m not sure exactly how my doctor is planning on using it with me.  From what I’ve read it has been shown to reduce chronic migraine frequency and pain severity over a 6 month period after having the procedure done twice a week for 6 weeks. So yeah, I’d like to try that.

The above was written last night, May 16th, I thought I’d finish this up this morning and post it, but today did not go as planned, following is a recap of today.

Today started out pretty dang good.  I decided to try to start the day completely silent to see if my migraines would hold off for longer.  It was a nice way to start the day, the silence kind of forces me to be more mindful. I ate breakfast outside, sat out by the pool, did my breathing exercises, and started to do more of my yoga exercises, but the sun was too bright. I was still feeling good so I decided to sweep the front porch and patio. Gaah! That was the biggest mistake of the week! I got about half of it done when the pain in my back started to get too much, I slowed down and tried to get to a good stopping point. Then my vision got wavy, the pain started in my head, and my back seized. Oh boy. I dropped everything where it was and got inside as quick as I could so I wouldn’t fall down outside. Things calmed down and I thought things were going to be fine, I just had to rest. After about an hour things were going good. I was ready to get up and maybe do something, then the vertigo started, and I was not going anywhere. The rest of the day has been filled with these on and off sensations of vertigo and pain.  I wanted to try the Zomig, but I’ve already taken medication 7 of the 10 days I’m allowed in a month, I decided to save it for days when I have to be out somewhere, or really want to do something fun.

Speaking of something fun, we are planning on going to the botanical gardens this weekend, it is supposed to be a very nice weekend for it.  Cross fingers and toes we can make it there, I really want to go to the Butterfly House, and it closes for the season soon.

the photo above is by the pool, it was taken this morning.  It is my favorite spot in the yard, especially this time of year with the yellow, red and purple blooms.