ljsf's Status Updates

Oh boy! Getting a new diagnosis is never easy. Please let me know if you need anything. Gentle hugs, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team

Thank you Nancy, it’s been crazy. I haven’t left the house in so long. The dizziness makes me completely useless! Warmly, Linda

I'm so sorry! I hope your dizziness subsides asap. Sending peaceful vibes your way! ~ Sawyer (migraine.com team)

Hi Sawyer, The dizziness subsided, but not enough to let me drive and I so hate asking for help ! Then I fell down the stairs and sprained my ankle.( not my first time) I feel like I am missing season after season. I do stay as busy as possible. Luckily I have loads of hobbies. So, hanging in here, Thanks. Linda

Oh no, Linda! You have really been going through it lately. Did they give you crutches? What's the outlook on your ankle? Sending hugs -- get well soon! -Melissa, migraine.com team

hi Melissa, No crutches, too dangerous especially with this vestibular deal I have going on. By the way, I am questioning the diagnosis and as tedious and tiresome as it is I am going to look for a second opinion. One of my neurologist. A doll of a guy, saw him yesterday for trigger point injections in my head, gave me a name. She is with the MGH- Brigham group. Will call today. Will keep you all posted. So glad to have you to listen. Warmly, Linda

A second opinion is a good call. You have nothing to lose, and there's wisdom to be found in getting a variety of perspectives, I think. My fingers are definitely crossed for you. Take it easy and try not to push yourself too hard, as tough as that is. -Melissa, migraine.com team

Thanks Melissa. I really do appreciate all the support. Unfortunately my ankle has been sprained so many times, it is slow in healing. Ugg

Hey - Did you end up getting that second opinion from MGH-Brigham group? Curious to hear what the outcome was, and if you're any closer to the answers you were looking for.

Wishing you well, - Cody (Team Member)

Just checking in. How have you been doing as of late? Know that you're not alone in this and we're here for you! ~ Sawyer (migraine.com team)

I went to MGH years ago. Doc was mean, put me on Trokendi. If I complained, he just increased dose. I ended up in the hospital for 3 days.

not great. Have a great doc now, Brown Neurologist. No answers. I end up leaning on Maxalt with Benadryl. Dealing with other problems as well. Linda

That's awful - no one should have to deal with that! That doesn't sounds like practicing good medicine, does it?
Hoping this new doctor can provide you with answers, they are out there!
Sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team

oh gracious- that sounds like a horrid experience! Were you admitted due to migraine or due to side effects of the medication? Thank you for chiming in with your experience! Warmly- Holly -migraine.com team

frustrating to emerge with no answers. Sounds like you continue to do all you can to manage migraine in your life. When we do so it can make pain and other symptoms more upsetting as we are faced with the unfortunate fact that no matter how hard we try to find relief- migraine has no cure. A hard pill to swallow. It then becomes about managing symptoms to decrease the hold migraine has on our lives. Not easy. Glad you feel good about your current doctor. And we are so glad you’re with us. Your insights are quite valuable. Warmly- Holly -migraine.com team

Hi Holly, That experience and hospitalization was a few years ago. I know it was due to side effects of the trokendi. But to be sure they did all kinds of tests to rule out other things. It feels like forever ago, so I don’t remember everything. The more recent 3 hospitalizations for the dizziness are easier to remember. They kept ruling out stroke. So, yes, at this point I am tired of being a pin cushion and an experiment. So I try to take it day by. I also have my son with special needs whose life I organize. He is doing well. Thanks for keeping in touch, Linda

Living with migraine and being responsible for another dependent is a lot. Kudos to you for staying strong, and pushing through to the best of your ability. I can imagine it isn't always easy!

Warmly, - Cody (Team Member)

Thanks Cody, No, it’s not always easy. But thanks to my fantastic workers and awesome husband I can stay sane. Otherwise I probably wouldn’t. I do/ did have another son, adopted at the end of my horrid first marriage. He has been estranged for many years. I know this preys on me subconsciously, adding to the stress. My son ,David, with Fragile X syndrome is 30 and a love. He can’t occupy himself which is why he needs to be programmed all the time.
Just read about green light therapy. Anyone familiar? Thanks as always, you are the best. Linda

Hi Linda- Thank you so much for sharing more of your journey with us. First, I wanted to pass along the resources we have on green light therapy. Perhaps you'll find something useful there: https://migraine.com/search?s=green%20light%20therapy. Second, it sounds like your plate is full to overflowing with meeting the needs of your special-needs son- and navigating a sore heart due to the estranged relationship with your other child. I'm sure you're right that these challenges are adding to your overall stress that can impact migraine frequency and severity. We are completely here for you and in this with you. This is a hard journey and it's important to access support along the way. We are sending you such love and compassion. Please stay in touch. Warmly- Holly -migraine.com team

Wow, Linda, that is not okay. Did you talk about this with him or his superiors or just move on to someone else? I was glad to see you're in better hands now. Hugs. -Melissa, migraine.com team

Hi Melissa and Holly, I have literally tried every med out there including some off label ones. Sometimes there just isn’t an answer. I have to accept that. Fighting it makes it worse. Thanks for your support, Linda

Hi dear Linda- I totally agree that there is a lot of acceptance that comes with a life with migraine. We have such limited energy due to how much the condition takes from us. Using that energy toward fighting the idea of having migraine - and/or trying treatment after treatment - can deplete what little resources we have. Our energy is often better used when we accept that we have this condition and shift our goal to learning how to live with and around it. We are with you- I really resonate with what you shared and am sending love and support your way. Warmly- Holly -migraine.com team.

Hi Holly, Thanks for understanding. Linda 💝

Sending love today and thinking of you. Warmly- Holly -migraine.com team.