Light Switch Flipped

Image by Arek Socha from Pixabay

This is going to be just a (relatively) short update, if you read my last post you will have a good idea of what goes on during my treatments. My dose pack was increased back to 3 (84 mg), but the “trip” that I had the last 3 treatments was not as intense at the first time. It was pleasant, fun even, but not the same. My husband is so patient to put up with this, he says it isn’t bothered by it at all, but I have to wonder. He is not the kind of guy to just let loose and have fun with you when you are intoxicated and he’s not, and I’ve only seen him a little drunk once; and let’s just say he cannot sing but he’s a much better dancer when he’s a bit tipsy.

An amazing thing happened at the end of the last treatment, I felt as if a light switch flipped, and I looked at Stuart and said, “So this is what it’s like to not be depressed.” It wasn’t the happy silly feeling I was having when I was high, of course I wasn’t feeling depressed then. And during mania I don’t feel depressed. This is different. As a friend asked, “Is it like in the Wizard of Oz when the Black and White turns to Color?” YES!! Suddenly the cloud is gone. It’s just gone. If things weren’t so crazy in the world I’d probably be really happy right now, but as it is, I’m handling things really well. I had a little spell this weekend where things slipped in and I felt the cloud closing in, so I don’t think I’m quite to the point of going to a maintenance dose yet, but This is AMAZING!

I had another vertigo spell that lasted 3 days this week. It was mostly severe disequilibrium. I had no balance on Friday, I thought I had an ear infection. I could not walk without Stuart’s help, and by help I mean almost carrying me. I was stuck in a chair the whole weekend and couldn’t do anything for myself. It brought back the feelings of complete helplessness I had when I was at my worse. That is what triggered the small bout of depression, but it probably would have been worse before this treatment. I’m a bit concerned that I’ve been struck with vertigo each week I’ve had these treatments. If it happens this week, I’m really going to think SPRAVATO might be triggering my Meniere’s. If so, I hope it gets better the longer I’m on it. If that’s not the case, at least in maintenance I’ll only need it once a month, maybe getting it less often will lessen the risk.

So that’s all for this news. I have more to tell, but that’s for a different post.

Esketamine has finally been approved by my insurance

https://www.spravato.com/

I found out last week the ketamine (really esketamine, um SPRAVATO) has finally been approved by my insurance, and it has taken this long for me to wrap it around my brain so I could write about it.

My doctor keeps saying I’m getting ketamine, but really I’m getting SPRAVATO, which is esketamine. Ketamine is not FDA approved for treatment resistant depression (TRD), it has been used for it off label for quite some time now with very good results but it is very unlikely they will ever approve it for anything other than an anesthetic because it cannot be monetized. That’s where esketamine comes in. “Esketamine is a molecule taken from ketamine’s racemic mixture (basically two mirror image molecules which spin in different directions).   As it is an altered form of ketamine, esketamine could be newly patented.  As a result, corporate dollars were invested in clinical trials that led to the current FDA indicated use of nasal esketamine for TRD.” (Nasal Esketamine vs IV Ketamine) IV Ketamine has been used to treat TRD since 2010 and has a 70-80% success rate, esketamine is also showing to be very effective which makes sense since it is a molecular part of ketamine, but it has only been in use in clincal settings for a year so I don’t feel like we really know long term results yet.

I start my first treatment on Tuesday, March 10th at 2pm. I have to be enrolled in a restricted program called SPRAVATO Risk Evaluation and Mitigation Strategy (REMS) Program. It can only be administered in a healthcare setting certified in the SPRAVATO REMS Program to patients enrolled in the program. I go in and under supervision I give myself the nasal spray. Then I stay there in a quiet room, with Stuart, (there is no way he would let me do this without him being there) and I’ll be observed for 2-3 hours. You shouldn’t drive or operate machinery until the next day. For the first month I have to go in twice a week for a treatment, the second month is once a week, then it goes to every other week….eventually it goes to once a month and that’s the maintenance dose. That’s all depending on how well I do on it. I could go through the dosing faster, or I could not do well on it at all, but that is the normal regimen. I can tell you that I have been struggling with this schedule. The fact that Stuart has to leave work so much so that I can go in just to get this medication, ugh, this is awful. I’m trying really hard not to feel guilty, but it sure it hard. His boss hasn’t made this easier.

Most of the side effects of SPRAVATO are short lived but they can be pretty intense.

  • Dissociation (was reported 2 ways in clinical studies through adverse event reports, 41% of patients, and by using standardized scale, 61% – 75% of patients.)
  • Dizziness (29%)
  • Nausea (28%)
  • Sedation (was reported 2 ways in clinical studies through adverse event reports, 23% of patients, and by using standardized scale, 49% – 61% of patients.)
  • Spinning sensation (23%)
  • Reduced sense of touch and sensation (18%)
  • Anxiety (13%)
  • Lack of energy (11%)
  • Increased blood pressure (10%)
  • Vomiting (9%)
  • Feeling drunk (5%)

It can also cause abuse and misuse. (I don’t really know how since you can only get it in a clinical setting. How can you misuse a drug that you can’t take home?) It can cause an increased risk of suicidal thoughts and behaviors. (Why does it say this on every anti-depressant? Isn’t this what they are supposed to stop? hmmm. Or is this different?…scratching my head on this one) Temporary increased blood pressure that may last about 4 hours after a dose (could this be because people have been spinning and dissociating, and having increased anxiety?? I’m pretty sure my blood pressure is going to be a bit high before we even start.) Problems thinking clearly (not sure I’ll notice a difference on this one) or it could cause bladder problems, such as a frequent or urgent need to urinate, pain when urinating, or urinating frequently at night. (well that could be inconvenient). **all of the information about SPRAVATO came from literature provided by SPRAVATO.

Now you can probably see why it has taken me a while to wrap my head around this. The fear of having a vertigo attack has been real, and the thoughts of dissociation is a little scary, but I’ve been meditating and trying hard to simply stay in the moment and not get too ahead of myself, if I keep on thinking I’m going to get vertigo that’s a sure way to make that come true. I’m going to try hard to go in there with no expectations, simply aware of what may happen and having good thoughts about how this may help.

This is not only for my resistant depression, it is also going to hopefully help my migraines. It has been shown to help, reduce migraines, so I really am going in this optimistically.

Why Am I So Sad?

*Warning, this post may be a trigger for some people. It mentions major depression and passive suicide ideation.

self

I’m sitting here with a severe migraine and I’m certain that’s why I simply want to die, but why do I feel that way so much on other days? Let’s face it, my life is going better than it has in a long time. Yes, I’m having a really bad migraine right now, it isn’t as bad as it was last night or I wouldn’t be able to type this, but it’s still pretty dang severe. However, my migraines are much better overall. I’ve had 5 migraine free days this month! That’s enough for me to be dancing in the streets! I haven’t had a month with 5 migraine free days in….Oh, I don’t know how long! I have a house of my dreams, an amazing husband, wonderful neighbors….So why am I so sad? Why do I sit here and question if I should actually exist? How can life be so much better, and yet I feel so bad so much of the time? I have this urge to just run and run and run. I have this compulsion to pack a bag and leave. Where would I go? Why do I think that would make anything better? In reality I know it wouldn’t, after all, I’m trying to get away from myself and no matter where I go, there I am. I simply do not want to exist.

So these are these are the things I asked my psychiatrist last week, why am I still so sad? Why do I feel no better when everything in my life is going so well? She said, “It’s not what’s on the outside that’s bothering you, it’s your brain chemistry that’s out of balance.” Yeah, I knew this, really I did, but I’ve never had it this bad with everything going so well, and that’s a bit too simplistic for me. So I came home and started reading, I wanted to know more about this “brain chemistry” of mine. I found this article in Harvard Health that explains things really well in language I understood, and I thought some of you might find it really interesting too. What Causes Depression? Onset of depression more complex than a brain chemical imbalance.

More about me….We are still working on getting the ketamine approved. It seems as if it might actually be happening soon, or at least we will be getting a definite yes, or no from the insurance company, instead of this extremely long hold up that both me and my doctor are extremely frustrated over. If they come back with a “No”, I don’t know what the next step will be.

I’m doing everything I’m supposed to to try to be better. I’m eating well (most of the time), writing a gratitude journal every night, writing affirmations every morning, I’m trying to move more, I’m meeting new people, making friends…..All of this is very hard for me. I’m pushing myself beyond all my comfort zones and I’m still doing it, I’m trying so very hard to get better. At least when I’m focusing on those things I don’t have time to think about other things, but then I have days like today when all I can do is sit here because it hurts so bad and I think, “what’s the point?” I was supposed to go to coffee with my neighbors this morning, and I had to get Stuart to cancel for me because I couldn’t lift my head off the pillow it hurt so much. That’s a great way to make an impression, huh? I’m so tired. I’m just so tired of trying so hard, it just shouldn’t be so hard.

I know it isn’t always this hard.

I know it can get better.

I know it will get better.

I KNOW I WILL GET BETTER.

“Sometimes even to live is an act of courage.” ~Seneca

A Midi-Me Update – Injections, Psych meds, Houses…Stress

Photo by Thomas Plets on Pexels.com

A little bit of a catch-up as to what’s going on in my little corner of the world, besides, if I don’t write it down, how will I ever remember?

I got the results from the x-rays of my neck, it basically says I have Degenerative cervical spondylosis (often referred to as degenerative arthritis) with narrowing of C5-C6, retrolisthesis (the posterior or backward slippage of a vertebra) of C5 on C6, and bilateral neural foraminal encroachment (spinal nerve root is compressed on both sides) at this same level more extensive on the left.

I went in on Monday and got my injection. They did the injection between C7 and T1, a little to the right, because my right arm is the one that bothers me the most. When the nurse took me back to the procedure room I told her how nervous I was because of my hearing loss and Stuart couldn’t be back there. Since losing my hearing it’s very hard to have procedures BEHIND me without Stuart there to help me. She reassured me over and over that they would take good care of me. I had her tell me everything they would be doing, and I felt a bit more at ease. The doctor came in, this is the first time I met him, I only saw his assistant before, he asked if I could hear him at all and I tole him Yes, but after I lie down and he is behind me it will be garbled and I will have a very hard time. He seemed to understand. Obviously he didn’t, because it was horrible. He talked with his assistant the entire time, it sounded like just chit-chat but I can’t be sure because I couldn’t understand anything that was being said. I had no idea when he spoke to me. I didn’t know when he was going to stick me, nothing. I was terrified he was telling me to be very still or to move or something and I was not able to understand. When it was over I didn’t even know. I was confused if it was time for me to get up. When I sat up the nurse was there and asked if I was alright and I said, “I do not feel taken care of” and I burst into tears. I explained what happened and she said how sorry she was and that it should not have happened that way. I got myself together and went back to my room to get my IV out and leave. The doctor came out and made sure to catch me before I left and apologized. He was very nice and told me that he talks because it calms him, he was very sorry and it will never happen again. We will make sure we have a better way to communicate. I left feeling much better, and I was proud of myself for speaking up. In the past I would have held it in and gotten out of there as fast as I could and simply not gone back. Now they were educated and I had a much better experience.

Unfortunately, the shot hasn’t worked. I’ve seen no evidence of any change. We will have to try something else. I go back the day before Thanksgiving for a follow up, we’ll discuss the next steps then.

Now for an update on the psych side of things. I still haven’t gotten approval from my insurance company for the ketamine. They came back saying I needed to try TMS (Transcranial Magnetic Stimulation) first, so my doctor’s office had to send back explaining that I can’t do that because of my cochlear implants. Of course, it takes the insurance company forever to come back with an answer. Geez. On the up side though, the new antidepressant she put me on, Fetzima, is doing some good. I’m not back to my normal self, but I’m not feeling like I’m in the deepest darkest depths of despair either. I saw my psychiatrist on Wednesday and we increased the dosage, I’m hoping it will bring me up a bit more. She told me to watch out for side effects, as it can cause headaches. I asked her, “How would I know?” I was being kind of serious, like, would they be different than this constant thing I have now? or what? But she said, “I guess you wouldn’t.” Well damn. Now how do I know if my migraine is actually getting better but this drug is causing me to have a headache?

We have been constantly looking for houses, trying our best to find just the right house for us before our lease is up. We can move into Stuart’s father’s house, but that means we’ll need to move twice. We thought about renovating the family home, but we don’t really want to live there forever, so we are still searching for a place to call our own. Crossing fingers and toes that a house we saw this week will turn out to be the one. We might just have a very magical Christmas.

Speaking of holidays, is there anything more stressful than trying to organize a holiday meal with people won’t tell you what they will and will not eat until you tell them what you are making and then they just say, “Oh I can’t eat that”, or “The kids won’t eat that”? Ugh! I used to really want to have a family holiday, but boy oh boy is it a pain in the butt. They can’t afford to do much, so we thought we’d do everything, but I couldn’t get anyone to tell me what they would eat. I swear you just can’t please some people. So they are bringing food too, we will have way too much food for 7 people, about half of it, I can’t eat. When we lived in NC we used to have an “orphans” Thanksgiving. We’d have a big meal with a bunch of people who had no where to go for the holiday. It was always so much fun. We’d often play games after dinner and talk for hours. I don’t know anyone like that here, of course, I don’t know many people here.

To make things much less stressful for Thanksgiving I ordered our meal from Wholefoods. I’m adding another vegetable, a desert, and some cookies. That’s all the cooking I’m going to do, and I love baking, so that’s not stressful. I also make my cookies in batches, I simply freeze the dough and cook it later. Also, if I can’t do it, it’s not a big deal, the meal is taken care of, and the other half of the family is bringing a pie, so everything is covered. I find, the trick to surviving the holidays when you are chronically ill is to have all your bases covered in case you can’t do the things you want to get done. Don’t over extend yourself. Rest often and don’t eat too much junk. Try to keep your normal schedule if you can. You might want to increase some of your supplements. I increase my vitamin C, D, and Zinc during the winter.

How do you survive the holidays? Any tips you want to share?

Ketamine and Esketamine — Repost from Experiments in Happiness

In the upcoming weeks, as soon as my insurance approves it, I will be receiving Spravato (esketamine nasal spray) for depression. I wanted to put together a post explaining what it is all about it, then I found this post and thought I couldn’t possibly do a better job. So I hope you don’t mind if I share this with you. Please note that this covers all forms of ketamine, if you want to just read the “How Effective Is It” statistics surrounding what I will be receiving read sections 3 and 4. I got so much information from tbe post started to not even watch the video attached to it, but then I noticed that it is captioned so I went ahead and watched it and it is very interesting. It does get a little in depth in the science part of things, so if you are interested in that kind of thing, it’s worth it, but if that bores you, you might want to skip it.

Do you have any experience with ketamine? Know anyone who has? Do you have or know anyone who has, medication resistant depression? Or like me, the meds stopped working or there are just way too many bad side effects? I’d love to know other’s experiences.

Ketamine and Esketamine

Drug Class: NMDA Antagonist

How it works: Blocks a channel for a chemical in the brain called NMDA. This, in turn, increases the effects of another channel for a chemical called AMPA. This leads to increased effects of BDNF and mTOR. The increased effects of BDNF and mTOR helps the brain to rapidly form new […] Ketamine and Esketamine — Experiments in Happiness

My Brain Screams

manipulated detail photo of saguaro catus by wendy holcombe

For over a year now I’ve been hit with one thing after another. Last Fall my bipolar medication stopped working and I basically had a psychotic break with the mania/rage going way out of control and battling a lot of medication side effects before we finally got that under control. Then I had a severe UTI that caused hydronephrosis in both kidneys, I had a cyst removed from my scalp that got horribly infected and I had a reaction to the antibiotics. In April the severe intractable migraine started and has continually gotten worse; over the last couple of months I’ve been having an escalation of cluster headaches, at least one a week. and now my antidepressants have stopped working. All this while we have been looking for a house, in the worse housing market I have ever seen, and we have to move from our rental by the end of November.

It is any wonder my brain has decided to check out?

In 2016 I started having seizures during an extremely stressful time of my life. It was determined they were psychogenic non-epileptic seizures. You can read more about that in this post: Psychogenic Non-Epileptic Seizures What Are They? Since that time I haven’t had many, only a few and only in times of great pain (like when I was in the ER for my migraine) or extreme stress (like after a vertigo attack that happened during the mania). Lately they have been coming regularly. It is increasing my pain levels dramatically. When I have a seizure it looks like a grand mal seizure. It starts with my right hand twitching, then the arm goes, and the whole right side twitches and curves back, my head draws back, my muscles are all tight and spasming. It is very painful, and my neck and shoulder on the right side still hurt so much. I feel tingly on that side, and I just feel so off. During the seizure I am mostly aware, but I can’t do anything. Sometimes I’m not as aware, sometimes I’m very confused when it’s over. I always cry when it’s over. I feel so exposed, vulnerable, scared, and unsafe.

Just a year ago I was doing so much better I bought a car. I was driving, cooking, shopping, painting, swimming…. I don’t understand what happened. I’m not asking “Why me?” or anything like that, I’m simply confused. I know we made a major move, but I was doing pretty good for the first few months we were here, so I really don’t think it was the stress of moving. But I guess one stress could possibly have snow balled into a bigger stress… into a bigger stress… into more illness…but who really knows. All this could have happened no matter what. It could have happened independently, but it just happened to happen one right after another I suppose.

Where does it leave me now?

Migraines – I’m still starting Aimovig on the 28th for my migraines, but I won’t know if it’s working for 3 months. I just finished a round of steroids hoping to get a break from the pain, it did lower the pain level, but they made me so sick I couldn’t enjoy it. (Oh boy was I sick, Meniere’s and steroids do not mesh well together, at least not with me). I may go to the pain clinic to get injections in my neck, I haven’t decided about that yet. Just a little scared about that one. Oh, the Migranal nasal spray is working as a rescue medication, thankfully. It doesn’t completely take it away, but it comes close, so I am having a little bit of relief twice a week. More than I was getting, but as I said, it doesn’t take it all away, it takes it from a 10 to a 7 or maybe, if I’m lucky a 6. Ah….a 6…but that is a rarity.

Mental Health – I started a new antidepressant, Trintellix, on Tuesday. I’m to try it for 2 weeks and if it doesn’t work we’re going to try Ketamine. I’ve tried everything else. This should be interesting. I’m working with both my psychiatrist and my psychologist about my seizures. I need to get my pain and stress under control. One step at a time. Just one moment at a time.

Home life – We’ll be moving into one of Stuart’s dad’s houses the beginning of November. The house Stuart grew up in. We aren’t sure if we’ll continue to look for a house to buy, or if we’ll stay there and renovate his house. The house is a bit further out than we planned to live, so we’re going to live there for a while to see how we like it. Kinda cool that we can do that. I’ve just been freaking out a little about not having a home, and needing to settle down. I’ve been feeling so lost and temporary ever since we moved from our house, six years ago, but it’s been so much worse since we moved here. When we moved here we basically got rid of everything. We have 2 chairs in our living room, and one is very uncomfortable. We have no dining room furniture. Our home is very sparse. We did not plan on renting for this long. It’s just so hard on me. This has just been so hard. I need stability. I NEED IT.

Right now I feel very alone, vulnerable, and scared. The only place I feel safe is in my husband’s arms. He literally saves my life every day. I told him that if it wasn’t for him I wouldn’t be here any more. So much pain, both physically and mentally…it’s just so much. And my amazing husband told me that he loves me so much, he never wants to lose me, but it also makes him feel guilty because he knows how much I’m suffering. I don’t know how I ended up with such an amazing man. He’ll never know how much it helps me to know he hears me.

I have so much, a wonderful husband, a roof over my head, nice clothes, good food, access to quality health care, support…. and yet I’m so unhappy. I’m so very sad. It hurts so much. My thoughts are consumed with pain. I find no enjoyment in anything. A friend posted a question on her blog asking if you found out you were going to die what would you regret not doing more of….and I could not answer that question. First I thought, not helping others more, getting more involved…. But then I tried to think of something I enjoyed that I would wish I had done more of, and I had nothing. There are things I used to love to do, but now…..not so much. My art…nope. Cooking…too much work. Taking pictures…can’t see it. I can think of nothing. All I do is sit and color by number. And that’s not for enjoyment, it’s to take my mind off of the pain…the migraine, the chronic daily headache, the back pain, the neck pain, the hip pain, the bladder pain, the pelvic pain…so much pain every day.

life is suffering. life is pain. life is ever changing. life is impermanence.

Catching Up After An Unintentional Time Out

A monsoon storm, the first significant one of the season, crashes a few bolts down just before the gates opened for the Annual Bloom Night at Tohono Chul Park, July 13, 2019, Tucson, AZ. Kelly Presnell / Arizona Daily Star

After my last post about shame I didn’t mean to be away so long. That post caused a lot of reactions, some people seemed to understand my feelings of shame, others got very worried about me. First I want to apologize for not answering every comment, I have been going through an awful time with my migraines and simply haven’t been able to look at the computer much, and I will admit it has put me in a depressed funk, I’m so sorry if I worried anyone. The shame I feel is not overwhelming, I know I made it seem that way in the post, but I promise it’s not all consuming. It is not uncommon for people who have chronic pain or illness to have feelings of shame mixed in with feelings of guilt, I wanted people to know if they do, they aren’t alone. And I wanted people to know, I’d been feeling it and didn’t even realize that’s what it was. Now that I realize it, it’s easier to notice it, and to fight it. I understand that I have no reason to feel ashamed, I also understand that I have no reason to feel guilty, but those feelings still come. They are less now, but they still come.

Something happened this past week that I’d like to share. I’ve needed to cancel plans with our realtor a couple of times because of my migraines, and when we saw him he said, “Hi sickie! Feeling better?” At first I felt shame, then I was angry, very angry, and I stayed angry for days. I told Stuart if he wasn’t our landlord and a good friend of Stuart’s father he would no longer be our realtor. Then I decided he needed to be educated that this is not an acceptable thing to say to a person with chronic illness, or anyone for that matter. I was going to say something to him, but my advocate of a husband beat me to it. Stuart said that he was very apologetic and said that he doesn’t know why he said such a thing, it’s not something he would normally say. He doesn’t know that I know Stuart talked to him, and he hasn’t said anything to me. I’m simply proud that I didn’t just sit back and accept being shamed. This happens to us way too often and we mostly just shrug it off, I think we need to speak up more often and educate people as to how we should be treated. This is one way I will fight my feelings of shame.

Now, a really quick update. Since July 26th, my last visit to my migraine doctor, I’ve had 2 migraine free days, 2 days with moderate migraine pain (5-7), and every other day I had severe migraine pain (8-10), along with many other symptoms, such as nausea, light sensitivity, vertigo… None of my medications were working at all. My doctor prescribed Migranal, but it took until September 4th before I finally got it (stupid insurance hoops you have to jump through) and I can only use it 8 days a month. It’s been difficult. Our 15th wedding anniversary was September 3rd, we wanted to do something special, but instead I basically missed it. Good thing it’s the marriage that counts, and it’s a celebration every day. (HA…how hokey was that?!? It really is special though.)

I saw my migraine doctor yesterday. After my last appointment I had a CTA scan, that’s a CT scan that shows your arteries, it came back normal. I had just started Effexor to try to help my migraines, and I stayed on Emgality for prevention until we saw if Effexor worked. Well, Effexor didn’t work, so we are changing the Emgality to Amovig. You have probably seen the commercials for both of these drugs. They are similar, but a little different in how they work, so hopefully Amovig will be a better fit for me. It can take up to 3 months, to tell if it’s going to work at all. So I’ll know in December. She thinks this last 6 weeks could have been so much worse because of monsoon season. She said it has been worse than last year. I know I was affected last year, but I know I wasn’t this bad.

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.

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.

Short day

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.