Try Signing Up For a Clinical Trial for Migraines and Anxiety Disorders

Have you ever thought of taking part in a clinical trial to help with your chronic pain or anxiety disorder?

I recently connected with a startup based in London (but with offices in the US), that is doing something really interesting: they source clinical trials from around the world and allow patients like you and me to explore relevant trials on an easy-to-use platform. This is important work for people who have exhausted all traditional options for medication (for example, for migraines), and who would love to contribute to and learn about the latest cutting-edge treatments.

Since this company is always to connect patients with trials, they reached out to me to see if I would share their widget on bevoya.com. Since it might help my fellow beautiful voyagers, I said I would be glad to do it!

Use the widget below to explore clinical trials that might be applicable for you.

Comment in the space below with your experience. We would all love to learn from you!

What I Learned From the Early Days of My Father's Dementia

Me and my Dad in Hilton Head, 2008

Though the words feel foreign to me now, I remember writing this in March of 2008:

Hello,
My father is 66 years old and has had progressive memory loss/cognitive impairment over the last 5 years. He has seen a private neurologist, but as his condition is worsening, we are looking for a multidisciplinary memory disorders clinic. We would like the following services: + a neurologic/neuropsychiatric testing to establish a diagnosis and provide treatment recs. + social work to provide resources for our family for support and care planning geropsychology for counseling for my father/mother.

I searched your neurology website and found many comprehensive centers, but did not see one for dementia/memory disorders. Does the Cleveland Clinic provide these services in a coordinated environment?

Please contact me via email or phone at 415–846-xxxx if you have any questions. Thank you in advance for your help.

This isn’t about my father, though. Not exactly. And it’s not about his death from Alzheimer’s in November of 2013, five years after this email was written.

This is about what I learned in the early stages of his disease.

---

Five Mistakes I Made In the Early Stages of Alzheimer's Disease

This is for those of you who are seeing the signs of memory loss or dementia in your parents. Why? Because it’s starting to happen. I may have been the first, but I won’t be the last. In the past two weeks alone, I’ve spoken with three different friends in their late 30s/early 40s who have alluded to a parent or their in-laws’ confusing behavior, memory loss, and possible dementia.

I’m using examples taken from my own experience and my mistakes. I hope my stumbling will help you find your own path a little more easily.

1. I said, “He’s just lazy.”

Before he was diagnosed with Alzheimer’s, it seemed like my father just didn’t want to do very much. I got up the courage to talk to him about it. I remember it was President’s Day of 2004. I called and asked him what was wrong. I asked him to “come back.”

Takeaway

If your parent seems like they are working too much, or playing too much, or drinking too much all of the sudden in their late 60s…it’s not necessarily that they are depressed or choosing not to deal with things. It could be a sign of memory loss. Maybe they’re sticking with familiar patterns but unable to modulate the way they used to. (My brother: “To me, Dad’s early stage dementia behavior was only an exaggerated version of his regular self.”)

I spent years thinking my Dad was lazy. I regret that now.

Note: This behavior is well described in the incredible novel We Are Not Ourselves. It’s the only book with an Alzheimer’s plot I’ve ever read. On that topic, I’d recommend limiting your media intake around books and movies with dementia plots. It can’t help, as much as we want it to. In a way it can hurt. They are dramatizations, and often manipulative. I’d suggest sticking to straighter sources of information you trust until you feel pretty comfortable with the topic. I’m not there yet, for example. I may never be.

---

2. We thought my Dad would enjoy socializing.

My brother, who lived close to my parents during this early stage, says, “The most telling sign of early stage dementia, for me, was Dad’s inability to mingle in groups. My takeaway is recognizing that no matter how hard it is on a child to cope with a parent with dementia, the parent with dementia is coping, too.”

Takeaway

Our big mistake was attempting to create social situations for my Dad, or include him in groups the way we once had. I wish we had given ourselves—and my Dad—a pass on all mingling.

---

3. I fixated on diagnosis. 

I spent years trying to get my Dad neuropsychological testing, having figured out testing was the place to start by talking with a trusted friend who, luckily enough, was a doctor. Here's a note I sent her from the middle of my impatience in March of 2007:

It’s so fucking frustrating to me that everything is on this constant excuse, “We can’t do that because we are going to SC” or “We only have two months in Ohio so we can’t do it” — just a bunch of excuses as far as I’m concerned, but I think that’s how [my parents] live the way they do.

And here is her brilliant and measured response:

I can understand the frustration with the nomadic parents. It’s hard to know whether people put things off b.c. it isn’t a priority or b.c. they don’t want to face up to them. In this case, I certainly don’t think it will matter to postpone the testing as it’s more likely to give a baseline assessment than change how things are managed right now.

Takeaways

If you feel frustrated and want answers, I feel you. Just know that your quest for a diagnosis may be for your own peace of mind more than for the good of your parent (or your supporting/caregiving parent, if you have one). It’s great to understand your parent’s mental baseline, but ultimately, did it matter that my father was diagnosed with mild cognitive impairment? I was so focused on taking “the right steps” that I couldn’t hang out with where we were as a family at the time. I just wanted action.

Everyone in the family, including you, is adjusting to this change at different speeds. You know this intellectually, but you’ll probably experience it viscerally in the next couple of years. You’re just starting this process of letting go of your parent (and I know that even reading that sentence might hurt, and I’m sorry to be saying it to you). Everyone reacts to the loss differently. Throw a wildcard like un/diagnosed dementia into the mix and then you have heartbreak mixed with a shared project management situation going on. There is no one right way to do heartbreak on top of project management. It differs greatly based on your resources — more money and time is better — and location.

---

4. I acted weird.

When I would go home to see my Dad, I was tense. I didn’t know how to avoid asking him questions. I felt like I did everything wrong.

Takeaway

My daughter, who was 3 years old when she last saw my Dad, seemed to understand dementia a lot better than I did. If I were doing it over, I’d take lessons on hanging out from kids. She knew how to be in the moment with ease. When her grandpa would get confused, she’d just reintroduce herself. “I’m Alice.”

---

5. I went to a support group, and it was all wrong for me.

I tried to figure out how to get the right information and support in the early stages. I went to a support group for people supporting people with Alz at a hospital in SF. It was all wrong. Just like that sentence.

Takeaway

Find your people, and stick to them. I really wasn’t comforted by hearing how I was supposed to appreciate the new person that dementia gave me. Other people might be, though. If this post isn’t helping you close it right now and forget you ever read it. Ditto with how people respond to news of your parent’s sickness. Close, delete, and forget the responses from people that don’t fit who you are.

---

One last thing.

Plan and record a StoryCorps interview session with your parent, either in person in the StoryCorps mobile or with the app. The Memory Loss Initiative was particularly great for me. I did sessions with both of my parents.

---

May of 2008, two months after I wrote to the Cleveland Clinic.

I’m painfully aware of how little there is here. I’m giving you scraps really. But it’s more than I had when I set out on my journey.

I’m sorry that you are facing this.

I know how confusing this all is.

I hope that you don’t feel alone.

---

To make my heart swell a little, make a donation of any size to the Cure Alzheimer’s Fund in Rodney Arthur’s name.

Resources

New York: Special Touch In-Home Care

My Experience with Fainting, and What It Taught Me

I see that my shame stopped me from learning from the experience.

“Have you ever fainted?”

I was in hospital, waiting for surgery. The person asking me the question was a young doctor, a member of the anesthetic team. Without thinking, I said ‘No.’ And then I suddenly remembered—what I’d said wasn’t true. I called her back to tell her I had, in fact, fainted once, long before, when I was a teenager. How could I have forgotten?

---

I’m sitting at home with my mother, casually reading a magazine. Why am I reading this article about some celebrity who had had a heart attack? He felt pains in his chest…Suddenly, I’m feeling pressure in my chest. I’m sweating…I feel sleepy…What’s happening to me? Am I having a heart attack? I can’t keep my eyes open…

——

I open my eyes. I feel a bit weak, but I seem to be all right. Whatever happened, it’s over. I must have just closed my eyes for a second. And then my mother says “You fainted.” Oh no…

I’d always been afraid of the idea of fainting. I thought it was a sign of weakness, unmanliness. And now it had happened to me…

——

I suppose that I had suffered a panic attack. I’d always been prone to anxiety about health issues and I suppose the heart attack story triggered it. It was the sense of the victim’s vulnerability: one moment you feel all right, next you are in deadly danger. I’d lived out a kind of miniature version of the same drama: one minute I felt all right, next I was slipping, frightened, into unconsciousness.

I managed to forget it, perhaps because I was too ashamed of myself to think about it, let alone talk about it. Now I see that my shame stopped me from learning from the experience. Learning that we can’t be invulnerable and that we shouldn’t judge ourselves in terms of a false gendered ideal. Now I’m glad I know what it’s like to faint.

Have you ever had your own fainting experience? What did you learn? Share in the comments below.

---

 Michael M lives in London, England, and works in a university.

I'm Chris. I Have General Anxiety Disorder.

Hi, I’m Chris. I have general anxiety disorder, or at least that’s what the psych told me.

I’ve been on Prozac for about 3 years and for awhile, it helped. I felt a sense of normal that I only experienced in brief moments. But now I feel like my anxiety has overcome the medicine and like your article suggests, I’m bobbing up and down in a pretty rough sea.

When I was in the military, my anxiety lent to my roll as an angry NCO that didn’t take any shit from anyone. I found my release by smoking cigarettes, bitching and being an unpleasant person, but I fit in. When I left the military I found out how problematic my anxiety was in normal society. I remember distinctly when my wife came in with a vacuum cleaner and I instantly switched to an angry, irritable person. The sound of that thing was like physical pain that I couldn’t stand.

I still get this way when I get sensory overload.

I also can’t be in social situations too fast, like if I meet strangers in the wrong way, I become stand-offish and defensive. I have to pretend to be social in order to hide the fact that I would rather be alone like some kind of hermit. All of this because I can’t quite sync with others in social situations. Hangouts with friends are difficult because I have to rehearse them in my head and I often feel like I’m staging the whole thing like a play. If I don’t play the part to perfection then they’ll break through the illusion and see that I’m just an actor.

I could fill this whole page up with similar stories but I want to leave it with probably the worst aspect of my anxiety.

Sometimes, I get a wave of energy that’s so intense that I daydream of ways to release it. Kind of like those “satisfying” clips where you watch objects get crushed or destroyed. I imagine myself dying or getting crushed or shot or whatever and all that energy just dissipating. And that would be the end of me and this crazy state of being. Of course I’m not suicidal at all, it’s just day dreaming. But this is the new evolution of my anxiety.

So again I’m learning to ride the waves.

---

Have you had similar experiences? Do you have advice for Chris? Comment below.

Should You Go to Urgent Care or the Emergency Room for a Panic Attack?

Panic attacks. These sudden bursts of extreme anxiety and fear plague many people who suffer from anxiety disorders. In fact, according to the Anxiety and Depression Association of America, an estimated 40 million adults in the United States have anxiety disorders. That's a little over 18% of the U.S. population as a whole. 

While most people have heard of panic attacks, not everyone has experienced them firsthand. For this reason, it can be difficult to recognize the attacks as they’re happening, either in yourself or other people. Some people may go their whole lives without ever experiencing a panic attack. They're one of the lucky ones. Others might have experienced them in the past, but lack the knowledge to determine when this health issue has occurred.

That is why it's important to know what a panic attack looks and feels like. More importantly, it's vital that you know how to get the support you need. Here are some of the top things you should know about panic attacks and what you should do when you or a loved one is struck with this condition. 

What is a panic attack? 

A panic attack can take many forms but it's typically described as a physical response to intense feelings of stress, anxiety, or fear when there is not an actual threat posed to the individual. In some cases, panic attacks occur because of a traumatic event or as an anticipatory reaction; for example, people who are scared of flying might worry about an upcoming flight, triggering a panic attack before take-off. In other cases, feelings of stress can simply come to a head and trigger a fight or flight reaction. 

While panic attacks are not life-threatening, they can feel incredibly worrisome to the person experiencing the attack. Here are the most common symptoms someone might experience during a panic attack: 

• Racing heart and shortness of breath

• Chest pain (which can make the person feel like they're having a heart attack) 

• Feeling like they have lost control 

• Fearing sudden death 

• Sweating, nausea, and headaches

• Trembling, shaking, and chills 

• Dizziness or lightheadedness 

Keep in mind that these symptoms vary from person to person and there isn't always a trigger to inspire these sudden feelings. As such, it can be hard to tell whether the person is undergoing a panic attack or urgent health crisis. 

When you should go to the doctor, an urgent care clinic, or the emergency room

It's not uncommon for people suffering from a panic attack to fear death. After all, the sudden heart palpitations and chest pain can make many people think they're having a heart attack. If you are experiencing a panic attack for the first time, Webmd recommends that you go to the emergency room to be sure that it isn't a serious health issue. There, a doctor will be able to determine if you're experiencing something life-threatening, like a blood clot or heart attack. When it comes to your health, it's always better to be safe than sorry. 

If it’s the first time and you don’t know what’s happening, the emergency room is the right choice.

Should the ER doctor determine that you're suffering from a panic attack, they will encourage you to visit your primary care physician or a local urgent care center like these in Washingon State. (Editor’s note: Indigo Urgent Care actually put together this guide for us). At an urgent care center, you can expect a physician to go over your mental health concerns and offer advice regarding the next steps you can take. In most cases, this will be a referral to a mental health professional, like a psychiatrist or a psychologist. 

If you know you're having a panic attack, visiting your doctor or an urgent care center can also be a vital resource to help get you through the episode. For some people, simply knowing a medical professional is near can help them feel at ease to help the attack subside. 

What to do when you're experiencing a panic attack

If you know that you're having a panic attack, practicing relaxation techniques is one of the best ways to calm its effects. Deep breathing exercises and grounding activities can help distract you from the feelings of panic. You might also want to rely on a friend to help distract you. 

Keep in mind that most panic attacks usually subside within 30 minutes. Should this episode last even longer, seeking medical attention is advised for a more serious condition. 

At the end of the day, your health is the most important thing. Panic attacks are becoming increasingly common since more people are suffering from anxiety but it isn't always easy to tell when you're having an episode. Rely on the help of your doctors and mental health professionals to keep your health in check. 

I Experimented With... A New Way to Change My Body Temperature

The only prototype of a new Kickstarter campaign, Calm Cuffs is a great idea from two Wisconsin sisters.

I loved the note I got from Elizabeth Paulson, one of the women behind Calm Cuffs:

Our mother is a saint. Except when she gets too hot. It's always been like this. This sweet woman would be lovingly sewing our Halloween costumes one day and then the next she's hurling a spatula across the kitchen because the oven is on and the pasta is boiling and it's too hot.

She goes on, “Same for our nephew. He’s five and sometimes the world just gets to be a bit much for him. With him, it’s not big heat, it’s big emotions. One day, instead of letting OUR emotions get the better of us, we raced to the freezer and put a bag of frozen peas on our nephew’s wrists. It was as if we'd switched the "off" button. He felt calmer instantly and was back to his old self a lot faster than usual.”

I especially loved the way Elizabeth described why they thought of creating this product: “And, as 30% of the population does, our sister suffers from anxiety. As we used cool to help our mom overcome menopause and our nephew take deep breaths in the midst of big feelings, we found that applying cold to the wrists of our anxious sister helped her feel better. “Someone should invent ice packs for wrists,” my mom said. “For all of us.” So we did!”

The result? Calm Cuffs launched today on Kickstarter. Check it out.

Calm Cuffs helps when anxiety hits by: 

• Immediately cooling the skin

• Applying pressure to wrists, a known acupressure point, that helps alleviate secondary symptoms of anxiety such as nausea

• Stopping the “fight” or “flight” reflex

• Giving your body time to cool down

The prototype Elizabeth sent me is smaller than the “real” product will be. At just 21 cm, it was too tight for me to wear comfortably. My daughter, however, gave it a try and gave it the thumbs up.

“I love it!”, she said. “I just want two and I hope they stay cold a long time.”

If you’re interested in experimenting with a product like this to alter your body temp, you might want to kick this duo a few bucks to get their product off the ground (and stay in the loop as soon as it comes on the market). Would you use something like this? Comment below and let us know.

Keep exploring, fellow Beautiful Voyager. And keep inventing.

I Experimented With...Diffusing New Smells In My Room

I took this video of the diffuser in action — you can hear that it has a little white noise element that is the sound of the oil bubbling, but is overall very quiet.

The good people at Organic Aromas were generous enough to send me a diffuser to test, to see how changing a scent in my room might help me with my anxiety symptoms like migraines and nausea. They also offered to give Beautiful Voyager a diffuser as a giveaway, so you will get the chance to try out a diffuser like the one yourself!

The diffuser they sent me is called the Opulence - Nebulizing Diffuser. I like its simplicity, and the way the glass lid fits into the glass carafe stem.

Gayle of Organic Aromas also sent me a lavender essential oil to try in the diffuser. The essential oil seems high-quality and very potent (though what do I really know about essential oils? Not much).

I really liked that this diffuser doesn’t need water added to it. You just drop in 20 drops of the essential oil, plug it in, and let it run. The effect is immediate in your room.

In terms of how the new smell affects me — it depends on the day! I find that hormones greatly affect my sensitivity to smells. On days when I am super sensitive, I run the diffuser just a short time to bring a relaxing smell into the room. On days when I’m less sensitive, I let it run more. If you don’t like smells, a product like this won’t be for you, but if you’re like me, and you like experimenting with new smells to change your state of mind in a subtle way, you might want to give it a try!

NOTE: I just learned from Gayle that the bubbling sound in my video is due to a need for me to add more essential oil! It is a soothing little notification that the diffuser is out. She notes, “if there is a bubbling that means that there is probably not enough oil on the diffuser. When you see or hear bubbling, if you dont like or want it, you can just add a few more drops of oil and it will go away. Also, you should try to use your diffuser on the LOW volume setting if you can. The diffuser is more than powerful enough on the LOW to cover any bedroom or small office space in a matter of minutes. Once the aroma reaches the desired level you can choose to turn the diffuser off at that time.” Thank you Gayle!

I’ll be updating this post with news about the giveaway as it happens. More soon!

I Experimented With...A CBD Subscription Box!

CBD bath bomb. This is the second one I’ve tried. Perhaps you remember the first ?

As a long time migraine sufferer with frequent nausea and motion sickness, I am always on the search for new products to experiment with. I never know what will help, so I have to keep an open mind when trying new methods. Recently the good people of Hemp Crate Co offered to send me one of their CBD subscription boxes filled with products to try. I took them up on it just to see what I could learn!

Here are the products the box included:

Dr Norm’s CBD chocolate chip cookies. These reminded me a bit of my childhood in the ‘80s with their Snackwell-esque vibe.

You put this CBD oil under your tongue and hold for 60-90 seconds. Once you’ve done that, you’re allowed to swallow any remaining oil.

I also haven’t tried this either but there’s no CBD here.

Truthfully I haven’t tried this yet but am looking forward to brewing it up.

I tried these first. Interestingly, I don’t see them on the site anymore, but they were tasty.

It was a treat to be able to try a variety of products, and I liked that this site tries to help educate its consumers about CBD in general.

CBD: Is it for me?

The truth is: I don’t totally know. I’m still finding my way through the world of CBD products. I’m also on 15 mg of Lexapro every day, so it’s hard to know whether the impacts of CBD would be felt more if I weren’t on an SSRI. I can say that CBD certainly doesn’t seem to have adverse effects on me, and as long as I am lucky enough to get to explore new products, from reputable sources like this one, it feels worth the try.

Have you tried any CBD products that helped you with anxiety or migraines? Share what worked for you!