Relief. The Importance of Keeping a Medication Diary

On By WendyIn Chronic Illness, Chronic Pain, Invisable Illness, Migraines11 Comments
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

On By WendyIn Chronic Illness, Chronic Pain, Invisable Illness11 Comments

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

On By WendyIn Chronic Illness19 Comments
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

On By WendyIn Chronic Illness, Headaches, Migraines20 Comments
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

On By WendyIn Chronic Illness, Headaches, Migraines28 Comments

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

On By WendyIn Chronic Illness, Invisable Illness, Migraines20 Comments

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

On By WendyIn Chronic Illness18 Comments

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.

Me, Me, and More Me

On By WendyIn Chronic Illness, Migraines29 Comments
New Haircut Today! New Glasses last week.
You can see the back.
Before.
my before glasses and how my hair has been worn on a day to day basis for many years.

Today I got my haircut!

My appointment was a 9am. I normally wake up between 8:30 and 9am, to insure I was awake for my appointment I had to get up when Stuart left for work at 6:30am. He was very kind and went in 30 minutes later than normal so I could sleep in. hahaha 1st accomplishment – I got up early. I got ready, took silly pictures of me and drove to my appointment. 2nd accomplishment – I drove! The appointment took over an hour, during which a migraine started that hit an 8, I thought I was going to throw up and had a hard time staying up right, but I carried on and I’m fairly certain my stylist never knew how badly I was hurting. She did know I had a headache, but she didn’t know I felt like spewing chunks on her station.
3rd accomplishment – I made it through the appointment. When I left I sat in my car with the air on full blast, texted a friend and drank lots of water until I felt it safe to drive the 2 miles home. (It really would have sucked if I would have needed to call Stuart to come get me) 4th accomplishment – I made sure I was safe. I gave myself permission to spend the rest of the day resting and taking care of myself. I will be doing my breathing and strengthening exercises before sleeping tonight. That will be number 5 and closes out my accomplishments for the day.

I feel like I’m having a one sided conversation with you, my friends, I wish I could sit and have a cup of tea with each of you and learn more about you. This may be the last of my daily musings, I’ll be back in a week or two, or when something exciting happens, until then I’ll be around with a little this and a little of that, until then love yourself. xoxo

This, That, and The Other

On By WendyIn Chronic Illness, Migraines21 Comments

In just 8 days since I started writing these journal posts I’ve made some observations. The antidepressant is working, and I’m very glad I took the chance and tried it. I’m in a much better place mentally. On the other hand, I do not see a great improvement from the Emgality, I hope I’m wrong, but as of right now my migraines aren’t better and I’m having an increase in vestibular migraines. Finally, I can see that I get a lot more done than I thought I did, and by paying attention to what I’m doing encourages me to do even more. I may not continue to write these journal entries publicly, (let’s face it, who really wants to read my day to day activites?) but I think I will continue to keep a private journal, I can really see how useful it can be.

More thoughts about my migraines I’ve noticed over the past month or so I wake up with relatively no pain, this has changed since starting Emgality, I used to wake up with a migraine almost every day; however, within a couple of hours a migraine will normally start. There were a few days last month that this didn’t happen, but for the most part, I could set my watch to it. This past week I’ve had 3 vestibular migraines, (a vestibular migraine causes dizziness and vertigo with or without pain) each one has been accompanied with severe pain and confusion. These are not new, but they do seem to be coming more often, and are more intense. Things to talk about with my doctor.

Cactus Flowering Tucson, AZ W. Holcombe

Yesterday I finally spent some time outside. I have 3 types of exercises from my new therapist, breathing, hip stability, and functional. While I was outside I laid down by the pool and focused on my breathing exercises. It was so nice, I finally felt things said I should feel! Exciting! I got all of my exercises done, not all at once, but I got them all done. So, I didn’t get a whole heck of a lot done yesterday, but I accomplished exactly what I wanted to, I went outside, and I did my exercises. The rest of the day I didn’t feel well and didn’t feel like doing much of anything, then right before I fell asleep I had a migraine hit that was excruciating. I thought a cluster was starting it was so intense, but it didn’t quite hit that magnitude. However, the pain was behind my eye and in my temple, my eye watered and right nostril ran, just like when I have a cluster. I had to move because the pain was so intense. So, I’m not positive it was not a cluster, but if it was, it wasn’t quite as painful as ones I’ve had in the past; not to say this was not severely painful. (for me a cluster is the greatest pain I can imagine, the pain I had last night would have sent me to the ER if it had lasted longer, but it was not the worst pain imaginable.)

Quick rundown of today. I ate breakfast outside. I took a bath and washed my hair. (this is a big task for me) I had a dentist appointment (check up, cleaning, fixed a small chip in a filling, and a fluoride treatment), went to Trader Joe’s, had dinner at the table with my husband, made “brownies” (hopefully I’ll sleep better tonight), and watched old Dr. Who’s for a bit. I did have a migraine that started shortly after breakfast but it didn’t get above a 6 all day so I was able to function. I used my functional exercises while making brownies and my back hurt less, but it did start to hurt more after I finished. I’m just thrilled I was able to get them all mixed up and in the pan without being in intense pain. Today was a FULL DAY! Tomorrow is an early day, so I’m going to bed.

Short day

On By WendyIn Chronic Illness, Mental Health, Migraines4 Comments

The day started out okay. I could have slept longer but Kiki decided it was time to play, and who can argue with that face?

Kiki

It was a normal morning, I had my breakfast, took my meds and thought about what I could accomplish today. I only had 3 things I wanted to get done 1- spend some time outside, 2- fill out insurance information for cochlear implant replacement, 3- do my new exercises.

Out of the 3 the exercises were the most important, so I decided to do that first. Then I looked down at the floor and thought, “There is no way I’m getting on that dirty carpet and have my allergies go crazy again, I’ll vacuum it first.” So, I picked up everything on the floor, moved things around, pulled out the vacuum and vacuumed our small living room. It was going well, then right before I finished I had a shooting pain through my head, the room spun and got dark, I had a hot flush, got nauseous, and had to sit down fast. Another vestibular migraine.

The pain lessened in intensity in a relatively short period of time, but I’ve had continuous other symptoms throughout the day. I feel awful and can’t trust my balance at all, so I basically spent the day curled up in my chair watching Netflix (I saw a talk by Brene’ Brown and an episode of Queer Eye) then I watched cooking shows (which made me want to bake bread and make my own crackers.) Have I mentioned I’m obsessed with The Great British Bake Off? I watch it over and over, can’t wait for a new season to come to the US. Oh, it’s called The Great British Baking Show in the US if anyone is interested.

Now I’m off to bed, having only accomplished, let’s see, nothing on my list for today; and that’s perfectly okay. I got the living room vacuumed!

I do believe the new antidepressant must be working, 2 weeks ago having a day like today would have made me feel worthless, useless, and filled with dread. Today I can take it for what it is, life at this moment. Nothing more, nothing less. I guess it was a good day after all.