9 posts from October, 2013

Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia

Posted October 23rd, 2013 by

Marcia

As part of our “Are You Sleeping?” initiative, we’re talking with different patients to learn what it’s like to live with a lack of sleep and how that impacts their health. Recently, we caught up with Marcia, a PatientsLikeMe MS community member (some of you might know her as gamma) and happy grandmother of 3 who has had her fair share of experience with insomnia. Marcia talked about her initial diagnosis, her treatment with Zolpidem and general advice regarding insomnia – scroll down to see what Marcia had to say!

 

When did you first start experiencing symptoms of insomnia? Were you ever officially diagnosed?

It has been a while, I think it was early in 2009, so I would have been 49 years old. The problem began with a feeling of bugs crawling all over my skin, and the resulting itch was insane and kept me awake. I did eventually get the itchy bugs under control but the inability to sleep persisted. My primary care provider diagnosed insomnia and prescribed a sleep aid.

I noticed on your health profile that you have been taking Zolpidem since March 2009. How often do you use a prescription drug to treat your insomnia? Has it worked for you?

I did indeed take Zolpidem every night for about 3 1/2 years, and I still was not sleeping as well as I would have liked, but if I skipped a night, I couldn’t get any sleep at all. About a year ago, I noticed that the Zolpidem was no longer working, and I made the decision to wean myself from the drug. I do still have a bottle of Zolpidem sitting on my nightstand, and on those occasional nights that I am desperate and can find no other way to fall asleep I will take one.

How does insomnia impact your MS? On the flip side, how does MS affect how you sleep? 

Hmmm….that is a good question. When I don’t sleep well I find the symptoms of MS much more bothersome. When I am tired I have less patience, and it is more difficult to maintain a positive attitude. The fatigue is amplified and I have less energy to deal with even the small stuff. On the flip side, it is often the symptoms of MS that cause my inability to sleep or stay asleep. Sometimes it is pain, sometimes it is the sensation of bugs crawling on the skin. When this happens, even if I manage to reign in the symptoms, I often spend the remainder of the night awake wishing I was asleep. It becomes a vicious circle; sleep deprivation amplifies symptoms, and symptoms increase the inability to sleep.

How has connecting with others on PatientsLikeMe who live with insomnia positively impacted you?

Connecting with others has many benefits. First, it helps me remember that I am not alone with this challenge. There are others that truly understand because they too are dealing with the same thing. Also, when sharing with others, I can glean ideas from them, including coping strategies that I might not have thought of on my own. And as an added bonus, I get to forge new friendships!

If you could give one tip to people who are living with insomnia, what would it be? 

Find someone to connect with! Either face-to-face or on the web. When there is someone who truly understands and is willing to be there when you need support, it will help keep you grounded and help to keep you from going crazy. It is so easy to lose your perspective when you are so tired that you can’t focus.


Hypertension on the Open Research Exchange- A talk with pilot researcher Tamara Kear, PhD., R.N., CNS, CNN

Posted October 17th, 2013 by

We’ve been talking about the new PatientsLikeMe Open Research Exchange on the blog over the past few weeks, and today, we’d like to introduce another one of the pilot researchers. In case you haven’t heard, our researcher partners will be using ORE to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will be able to give feedback on their work, putting them – the patients – at the center of new medical research.

tamara

Tamara’s background includes more than 20 years of practice as a nephrology nurse caring for patients with chronic kidney disease. Over the past three years, her research has focused on hypertension, one of the factors prompting a rise in kidney disease.

Tamara is developing a tool that will help practitioners see how well a patient is doing at home and identify barriers in managing hypertension. There are over 6,000 PatientsLikeMe members living with hypertension, and their feedback will be responsible for helping improve the quality of Tamara’s research. PatientsLikeMe members can give their feedback right to Tamara. They’ll be helping her create a better tool that can improve treatment for everyone living with hypertension.

We’ll be sending out invites over the next couple of weeks, so if you’re living with hypertension and want to give your feedback on Tamara’s tool, simply create a PatientsLikeMe profile and we’ll take care of the rest. If you’re already a member, sign into your profile and we’ll be sure to send you an invitation.