Category:

migraines

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Hair on My Head, Part II

by Heather Loeb
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Not too long ago I blogged about whether I should stop my preventive migraine medication because I thought it was making me lose hair and changing the texture. I was hesitant to do so because it also helped me control my appetite, but I stopped anyway because I was so obsessed with my hair.

I didn’t think what it would do to my migraines, and now I’ve had a migraine for a week straight. Man, I’m stupid. So last Friday I started back on the Topamax again. Sigh. I honestly didn’t give much thought to my migraines because I’m on another preventive medication, but clearly I need both. I forgot how badly it sucks to have a migraine every.single.day.

I’ve had to leave work functions early. I couldn’t do anything fun on the weekend. I threw up multiple times. I basically lied around the whole week waiting for relief. And I’d get a few hours then the pain would bounce right back. It’ll take me a while to titrate up to my normal dose, so I guess I gotta be patient. My specialty, lol.

I can’t believe I used to suffer from chronic migraine, where I’d have 16 or more migraines in ONE MONTH. No wonder I had depression. No telling which came first. A true chicken or the egg situation. You just can’t live a live with that much chronic pain. Sucks.

Maybe the meds aren’t the reason for my hair changes. I mean, I’ll be 40 in six months. Maybe it’s hormones. It’ll be fine. It’s just hair. I’d rather have little to no migraines. I’ve lived far too good a life to go backward. I’ve seen the light.

I feel terrible for those who have chronic pain; my heart goes out to you.

And now I don’t have to worry about my weight fluctuating, which is also a huge struggle for me (because of my eating disorder). The only downside to that is the Topamax makes all carbonated drinks taste like crap, so I don’t enjoy my beloved Diet Cokes like usual, but that’s a bad habit I could stand to lose.

All I see is what I stand to gain.

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Crazy…Like a Fox?

by Heather Loeb

I recently sent a meme to one of my friends that said, “I am the friend you have to explain to your other friends before they meet me.” She laughed it off, but I feel it’s so true.

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See, I have baggage. A lot of baggage. I don’t mean to bring it with me where ever I go, but sometimes it just sneaks into my daily life. For example, I have retrograde amnesia. I also have trouble with my short term memory — this is due to the electroconvulsive therapy (ECT) I did for my treatment-resistant major depressive disorder. Sometimes I’ll introduce myself to the same person twice (or three times). It’s hard for me to remember things so I try to write everything down. It’s not a huge deal, but it’s annoying and sometimes I come off rude when really I just can’t remember.

Then there’s my anxiety. When I start to feel I’m not in control, I become irritable and I snipe at people. On a good note, my anxiety makes me show up early every where I go. It makes me plan ahead, and I feel like I’m always prepared. But there are times where my depression takes over and I can’t get those things done. Then am I note only irritable, I’m overly emotional and feel very out of control. I hate feeling like that.

My diagnoses include:

  • Major depressive disorder
  • Generalized anxiety disorder
  • Persistent depressive disorder
  • Avoidant personality disorder
  • Binge eating disorder
  • Migraine disorder

I feel like I’m missing some, but you get the point. I’m more than my diagnoses, but my behavior is hard to explain when someone doesn’t know what I’m going through.

More recently I started a new med for my migraine disorder. It’s called Topamax, and it has helped immensely. I haven’t had a migraine since I started three or four weeks ago. BUT it has the weirdest side effects and when I explain them to people I feel like a “crazy” person.

  • It makes carbonated beverages taste gross
  • It leaves a weird taste in your mouth
  • I’m not able to sweat when I’m exercising so I have to drink tons of water when my body temp rises
  • I have to drink tons of water, period
  • It causes indigestion
  • It causes memory loss (just what I need)
  • Constant eye twitching
  • And it causes brain fog – I’ve literally forgotten words while I’m talking

There’s so much more.

Because I take a karate class, I had to explain to the instructor about the body temperature thing, and boy did I feel crazy. I’m sure he’s never heard that before. Like when I explain to people I have retrograde amnesia from “shock therapy.” It sounds unbelievable.

I shouldn’t care what people think, and normally I don’t, but sometimes I can’t help think I’m making excuses listing off my limitations — are they really limitations?

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I’ve had migraines since I was a kid. When I was 11 or 12, I started to get these awful headaches, but I didn’t know what they were. I started missing a lot of school because the only way I could get them to go away was to lie in a dark room. Noise and sounds bothered me.

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It was frustrating, because it made it harder for me to be a kid — play on sports teams and socialize with my friends at school.

The headaches continued through high school and progressively got worse. I remember when I was 18, a senior in high school, driving to a funeral in South Texas with my family. I got a headache on the way down, but this headache was different. I was so nauseated I couldn’t open my eyes. I was writing in pain on the floor of the car, because I couldn’t sit up. When we got to the funeral, I couldn’t even get out of the car.

We started the long drive back to Dallas after the funeral, and the pain just intensified. I threw up, which I had never done before during a headache. Finally, when we reached Waco, my parents couldn’t take it anymore. They stopped at an emergency room, and we were immediately seen.

The ER doc said he knew instantly what it was — a migraine. I had never heard that word before. He retrieved a shot of Imitrex and gave me the injection. Within minutes, I felt so much better. No trace of a migraine or nausea, I couldn’t believe it.

As we were leaving, he told my mom to follow up with a neurologist.

I saw a neurologist and explained my symptoms and talked about how much school I was missing. The doctor, who was very sympathetic, diagnosed me with migraines and wrote me a prescription for that magical Imitrex in pill form.

The migraines would show up somewhat randomly, but I did manage to nail down some triggers:

  • Interrupted sleep or not enough sleep
  • Certain smells, like floral scents or cigarette smoke
  • Stress
  • My period
  • Drinking alcohol

Even when I avoided these triggers, the migraines still plagued me. When I went to college, I didn’t find sympathy when I missed class, except one professor whose wife was also a migraine sufferer.

I was missing so much class that I had to file paperwork with the campus’ Students with Disabilities office in order to be granted absence leniency. I still didn’t receive sympathy from my professors. I really wasn’t looking for sympathy, just understanding, but I never found it.

When I started my first job after college, my migraines were worse from all the stress I incurred. I called in a lot. I was embarrassed and felt guilty all the time, and some of my coworkers became resentful, even telling me so. Which now, I understand as part of the stigma of migraine. Boy, it’s hard living with one invisible, let alone two (migraine and depression).

People thought I was lazy, and my friends thought I was avoiding social activity with them. I couldn’t win, not that I’m looking for pity now. It was just frustrating at the time and even now, migraines are grossly misunderstood.

There’s an article in Practical Neurology that speaks about the stigma of migraine, going back to the 18th century.

“In the late 18th century, people with migraine were represented as privileged, self-absorbed individuals, who used their migraine as an excuse for shirking social duties and avoiding social responsibilities. By the 19th century, migraine was perceived as a weakness of women in the lower socio-economic classes. Physicians caring for patients with migraine were also ridiculed as out of touch, incompetent practitioners who encouraged their patients’ neurotic tendencies. A negative, feminized view of the person with migraine has persisted since, whether migraine was viewed as a psychological defect or as the result of an excitable, feminized brain.”

The article includes a 2016 survey by a medical insurance provider that found just 22 percent of employers deemed migraine to be a “serious enough reason for an employee to be absent from work,” lower than for any other reason, including depression, anxiety, stress, the flu, or the common cold. People with migraine must choose which parts of their lives to sacrifice, frequently prioritizing work over others (social, personal, leisure).

That’s so accurate — that migraine sufferers have to choose which parts of life they have to sacrifice.

Between the chronic pain and sacrifices that migraine suffers do make, it takes a toll on mental health. I started experiencing depression an anxiety after my headaches started, so I’m not sure which came first, but I do know that my depression symptoms were intensified by missing school and work, and the pressure and guilt I felt about it.

There is data that shows a connection between migraine and depression. People with migraine are about five times more likely to develop depression than someone without migraine, according to Dawn Buse, PhD, the director of behavioral medicine at the Montefiore Headache Center.

Ms. Buse says that about 20 percent of people with episodic migraine—headaches on 14 or fewer days per month—may also have depression, and that number goes up as the number of headache attack days per month increases. Similarly, about 20 percent of people with episodic migraine have anxiety, and between 30 percent and 50 percent of people with chronic migraine also have anxiety.

None of that is surprising to me.

Here are some stats on migraine in the U.S.:

  • Nearly 1 in 4 U.S. households includes someone with migraine
  • Amazingly, 12 percent of the population – including children – suffers from migraine
  • 18 percent of American women, 6 percent of men, and 10 percent of children experience migraines
  • Migraine is most common between the ages of 18 and 44

You can see that migraine is not a rare disease — 12 percent of the population is huge. I also found this interested:

  • Migraine is the sixth most disabling illness in the world
  • Every 10 seconds, someone in the U.S. goes to the emergency room complaining of head pain, and approximately 1.2 million visits are for acute migraine attacks
  • While most sufferers experience attacks once or twice a month, more than 4 million people have chronic daily migraine, with at least 15 migraine days per month
  • More than 90 percent of sufferers are unable to work or function normally during their migraine

Facts provided by the Migraine Research Foundation.

Just like with any other invisible illness, more attention needs to be paid to migraine — more understanding needs to be applied to migraine as well. You can help end the stigma of migraine by educating yourself and others about it.

Risk Factors for Migraine Sufferers

  • Family history. If you have a family member with migraines, then you have a good chance of developing them too
  • Age. Migraines can begin at any age, though the first often occurs during adolescence. Migraines tend to peak during your 30s, and gradually become less severe and less frequent in the following decades
  • Sex. Women are three times more likely to have migraines
  • Hormonal changes. For women who have migraines, headaches might begin just before or shortly after onset of menstruation. They might also change during pregnancy or menopause. Migraines generally improve after menopause

To learn more about migraine, visit the Migraine Research Foundation here.

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Cancelled Plans and Spoons

by Heather Loeb

I’ve had to cancel plans with three different friends this week. I HATE cancelling plans — it makes me feel so guilty, because I feel like I’m letting my loved ones down. I know I can’t help it — and my friends are very understanding — but I still feel guilty and less of a friend.

At least now I can tell them the truth — I’m too depressed to leave the house. Before I went to The Menninger Clinic, I didn’t tell the truth, and I probably seemed like such a flake who didn’t care about spending time with her friends. But now, I’m honest. I said that I was having intrusive thoughts about suicide (not suicidal thoughts per se) and I just didn’t have the energy. I call it survival mode. You see, I’m getting an ECT treatment on Friday, so I just have to make it until then. The ECT should reset my stupid brain and maybe I won’t be so depressed and fatigued. I’m hoping that I won’t have as many migraines after this treatment, too. For some reason, my migraines have ramped up the past few weeks, and it’s been really annoying. I hate being limited by my illnesses, and on that note, I’m reminded of an article I read about the Spoon Theory by Christine Miserandino, who suffers with lupus. She writes about the physical and mental toll an invisible, chronic illness can take. And I relate.

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While describing what it’s like to have a chronic illness, Miserandino grabbed spoons and used them to represent finite units of energy. Healthline.com writes this of Miserandino’s theory, “Energy, for many of us with chronic illness, is limited and depends on many factors including stress levels, how we’re sleeping, and pain. Miserandino then walked her friend through the friend’s normal day, taking spoons, or energy, away from the friend as the discussion went on. By the end of the day, her friend wasn’t able to do as much as she wanted. When she realized Miserandino went through this every single day, her friend started crying. She understood, then, how precious time was for people like Miserandino, and how few ‘spoons’ she had the luxury of spending.”

I feel this in my soul. Especially right now. I have to save every waking minute in order to do what is absolutely necessary, what I deem necessary, at least. This includes taking care of the kids and all their needs. This, to me, comes first. My remaining energy, if you can call it that, goes to taking care of myself. Many people would argue that it should be reversed, and I don’t totally disagree, but this is how it is right now. I hope to change it, because I know you can’t pour from an empty cup, and if I don’t start taking better care of myself, my cup will stay empty. I’m working on that, too.

It dawned on me this week that I could probably space out the ECTs more if I just put in the hard work of self care. I don’t mean getting a massage every week, although that would be nice right now, but I mean taking my medicine as I should, taking breaks and eating healthier. And actually sitting and exploring my emotions instead of burying them then stuffing my face. That happens a lot, almost every day. I also would like to increase my therapy sessions to twice a week — I have a lot to do, lol.

That’s OK though. I’m worth the work; I just need to remember that every single day.

Thank you to my friends who were so gracious about me. cancelling on them. I love y’all and appreciate your support.

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My Mother

by Heather Loeb

My mom is cut from a different cloth. Even from a young age, she has always done what she needed to do. At 19, her father died. She didn’t hesitate to help my Mema with the younger kids. She took a job right after high school so she could help pay bills. My mother had seven siblings but the two older siblings were married and were starting families, so she helped take care of the younger five. Still to this day she helps her siblings, financially or otherwise because that’s who she is – a caretaker.

Skipping years ahead, she got married and helped my dad and his brother open a business. She was the first employee and she excelled at it, even though it probably wasn’t her greatest passion. Still she learned everything about truck accessories for heavy duty trucks and continued to work that job for years. After some personnel issues, my mom and dad decided to open a second store, this one with my older brother at the helm. It too was a success and it still didn’t bother her talking shop about truck bumpers, wheels and other accessories. Like I said, she always did what she needed to do.

I can’t speak for my brother but I’m sure he would agree – she would do anything for us. In middle school when I developed migraines, that at times were uncontrollable and debilitating, she became my advocate. She navigated a new world of medicine and therapies and triggers. Fragrances were a trigger so she stopped wearing perfume and bought special soaps.

Years later I finally told her I had depression – bad depression. This was not her field of expertise and although she was probably really scared, she learned the ropes and how to help me calm down during a depressive episode.

When I had kids my depression worsened. Some days I couldn’t find my way out of the overwhelming sadness. I would often want to harm myself. My mom, who had never experienced mental illness herself, dug deeper and supported me the best way she knew how. It must’ve broken her heart when I became suicidal and needed intensive intervention. I stayed at a psychiatric treatment center for 6 long weeks. But she was there, helping take care of my children, visiting me and encouraging me once again.

As I’ve now stabilized, I think about the calls I made to her crying, suicidal. Her love, strength and endurance has never wavered and she just listened, not knowing how to help her daughter stop being suicidal. I firmly believe she was meant to be my mom, to help someone who struggled daily with invisible demons. Someone who wasn’t cut from that seemingly magical cloth. But I have learned from her, too. My bouts with depression have taught me strength, most importantly, compassion. My mom has been my advocate, leading me to be an advocate for those who suffer from depression and anxiety. Maybe to those who haven’t had support and are afraid of speaking out because of the stigma surrounding mental illness. Maybe I’m more like my mom than I think. At least I’d like to think so.

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This past week I completed my first two treatments of Spravato. What’s that, you say? It’s a nasal spray with esketamine (very much like ketamine) that helps with depression and a host of other things, such as migraines – at least for me.

imgresMy first treatment did not go well. First of all, I HATE things going up my nose. Second, it gave my a horrible taste in the back of my throat and I got a little nauseated. I also didn’t dissociate, which is one of the biggest side effects of the drug. Under the FDA’s rules I had to stay there for two hours, so I was hoping for a little dissociation, otherwise it’s just boring. So, it had no affect on me besides being a little sick to my stomach and then I was bored for two hours. Plus when I got home, I got a huge migraine and for the next two days and had to see my neurologist to get a Nubain injection for my migraines to go away. Maybe it was just a coincidence but I was annoyed and didn’t want to go for the second treatment. It had been awhile since I’d had a migraine.

But to my delight, the second treatment went well. I got the hang of putting the nasal mist up my nose, got used to the nasty taste in my throat and this time they gave me Zofran for the nausea. I still didn’t dissociate but I was tired enough to take an almost two hour nap, so the visit passed rather quickly. Can’t say the same for my husband who has to stay there the whole time and give me a ride home. FDA rules again. He can’t leave the whole two hours while I’m receiving treatment.

I don’t feel a whole lot better, and since it’s hardly affecting me, my doctor is going to bump me up to the big girl dose next week, which is about 84mg of esketamine. When I go to get the ketamine infusions at the clinic via IV, I’m receiving 100mg, plus they give me a benzo in the IV – I don’t know why they do that. So, maybe the larger dosage will help me more.

Don’t get me wrong, it wasn’t a complete failure. I do feel better after the second one but I’m still dealing with symptoms of depression. But I don’t feel as blah as I have been.

I’m supposed to go three times to the clinic next week to get the larger dose, so we’ll see how that goes.

As far as my weight loss and journey to get healthy, I haven’t even been on the scale. I’ve been eating poorly and drinking Diet Coke again. My depression just hit hard this week and the week before. I think. I can’t remember last week. I’ll get back on track and keep you guys updated. Thanks for the support.

Stay well, my friends.

 

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Blah

by Heather Loeb

I haven’t written in a couple days and I don’t really feel like writing today. Yesterday, I had my first Spravato treatment, which I’ll get to later, and since then I haven’t felt right. I have a major migraine and I feel really depressed. So far not impressed with Spravato.

Anyway, that’s it for now.

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Migrainepalooza

by Heather Loeb

Remember when I said my migraines were nearly non-existent a couple of blogs ago? Well, this week they came back with a vengeance. Usually I would go get a ketamine infusion, which keeps them at bay, but guess what? The ketamine clinic here – the only one in town – has closed. The closest clinic is two hours away.

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Photo by Public Domain Pictures on Pexels.com

Now what exacerbates my migraines is really anything but since I’m doing TMS and it feels like a woodpecker pecking the shit out of my head, it tends to make things worse. Good times.

This week I had to go to my neurologist for two injections. When my migraines get very bad and my abortive meds aren’t working I go to my doc and he gives me an injection of Nubain and some nausea meds. It worked for a little bit Tuesday but then the migraine was back in full force Thursday. I also had a less intense one on Friday but didn’t end up going back to the doc.

During the week I missed a board meeting, play date, didn’t get any chores done, barely saw my kids because they were either at after care at school or with my mother-in-law. And of course that all depressed me because 1. I felt like crap and 2. I felt useless because all I could do was lie down and take a massive amount of drugs that didn’t help.

My husband, who has picked up the slack for me this week, has decided to drive me to San Antonio for a ketamine infusion. Maybe he realized my job was too hard on top of his because I suggested getting an infusion before I started TMS to avoid this whole situation. Men, they never listen.

Last week I also talked about how good I was feeling and then I went a little downhill but with migraines three to four days a week it cant help but depress you. Chronic pain will do that to you, like I discussed in this blog.

I’ve now completed 10 TMS treatments and they say you’re supposed to feel a real difference by treatment 14 or so. I’m really hoping the ketamine will help my migraines, the TMS will start working better and then I can get my ass in gear. I do have two 5Ks coming up in the next four months and I haven’t exactly been running, unless it’s to the fridge for a Diet Coke (I needed the caffeine this week)….which I’m supposed to quit.

I’ll blog after my ketamine treatment and give an update on my TMS treatments next week. Wish my luck.

For more information on ketamine for chronic pain, go here.

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Chronic Pain

by Heather Loeb

All this time I’ve been talking about depression but haven’t discussed what everyone really knows me for – migraines. I started to get headaches around 4th grade and they intensified around puberty. When I was 18, I was finally diagnosed with migraines. This diagnoses came after tons of absences from school, a lot of after school make up and a lot of what seemed like judgement from my teachers. Not to mention a lot of frustration from my mother who just wanted to help me.

I bring this up because often with depression comes chronic pain and some doctors question which comes first – do you get depression because of the chronic pain or are depressed people prone to the pain. Research from this site says that anywhere from 30 to 50% of people with chronic pain also struggle with depression and anxiety.

And what really, super sucks for me is that my pain was invisible to (most) people.

It didn’t really affect me until later in high school and in college. As mentioned early, I missed tons of class. My friends thought I was blowing them off when I inevitably broke plans. I had to register with the Student with Disabilities office in college to get absence leniency, but that actually got me more eye rolls than anything once my “disability” was revealed to my professors.

What they didn’t know is that my migraines were so bad I’d have to go to the ER if my abortive meds didn’t work, which they often didn’t. I would be in pain and/or throwing up for days. My eye would twitch and eye lid sag. My whole body hurt – not just my head. Then I would get depressed because I missed so much class. Then came the anxiety. Then came on more migraines because of the stress of missing class.

When I entered the workforce, it was so much harder. My bosses didn’t understand. And really how could they? Unless I threw up and passed out on the floor (which one time I did) there really wasn’t much to see. I got written up. My coworkers got irritated that they had to cover for me. It was a mess. Then I would get depressed because I missed so much work. Then came the anxiety. Then came on more migraines because of the stress.

Thankfully, my migraines improved after I had children. What’s funny is that I recently tried some ketamine infusion treatments for my depression, which didn’t happen to work for that, but I’ll be damned if it didn’t (almost) cure my migraines. I rarely have a bad one and I NEVER go to the ER now. But I’d trade migraines for no depression anytime. Too bad I couldn’t choose.

On a side note, if you are suffering for chronic pain or depression, I would definitely recommend the ketamine infusion treatments. It’s pricey but so are doctors’ visits, ER visits and medication.

So tell me my depressed brethren – do you experience chronic pain as well?

 

 

 

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