Pinned
People often think of bright lights and strong scents as “classic” migraine triggers. What are some that you’ve experienced that were surprising to you?
#Migraine #Headache #SUNCTHeadache #ClusterHeadaches #ChronicPain #ChronicIllness
6 reactions •
228 comments
A year ago, today, I went to sleep without a thought in the world of how the following day would begin one of the most difficult years of my life.
I went to work feeling fine and ready as I could be to take on the day. Within 5 minutes of my arrival, however, the universe had other plans that altered the remainder of my school year and perhaps the remainder of my life. I do not have a memory of exactly what occurred, but from what I do recall I stood on a chair to write on my whiteboard for the day. The next thing I knew I was on the ground slouched up against my desk with my legs stretched out. I felt like my ankle was twisted and that I'd likely have a headache the rest of the day. Boy was I in for a rude awakening that came the next few days. It was a terrible way to end 34 and ring in 35. I am so thankful for the members of my school family who helped me that day. Because of their calm and collected demeanor I remained calm and didn't think much was wrong but understood that I'd have to go to the hospital anyway.
I don't recall a whole lot about my time at the hospital aside from the knowledge I had a head CT and xrays of my foot/ankle area done. I remember being told I had a sprained ankle and then was given a boot to wear that felt way too clunky for my liking. I know I texted my sister to wish her a happy birthday and to let her know as my emergency contact what I knew of that occurred. Her response was "maybe you shouldn't fall so much." Her words didn't really sting until later, the following day (my birthday) and in the months to come, as I became aware of the breadth of my injuries. It became another justification/confirmation as to why my family was not in my life at that time. There was not a single time after that day that my sister checked on me to see how I was.
I would have felt extremely alone had it not been for my best friend who daily made sure to check on me, let me know I had a shoulder to cry on and listening ear, and someone who would hop on a plane if I said I needed them with very little reservation. A case worker through workman's comp became my angel here on Earth locally. The therapists who entered my life became my additional support system in every possible way they could. Otherwise, it was all me and me alone navigating this new world of mine.
To make what could be an extremely long story shorter, the remainder of this last year of my life has been a rollercoaster with every emotion possible running through my veins. Through the tremendous amounts of physical therapy, vestibular therapy, cognitive therapy, and mental health therapy I have been able to see that my strong resilience can help me navigate anything that comes my way. I definitely shed more tears over the course of the last year than any other in my entire life. I have felt awful more days than tolerable. On and off I have not been able to see a light at the end of this tunnel from hell.
Missing half of a school year, lots of events I had major FOMO about, feeling like a prisoner in my own body, and not knowing much other than day to day functionality was really tough. Throughout the work I've done with my therapist, I was able to work on my PTSD and use EMDR to prepare me as best we could to return to work in July. I took it upon myself one of the first days back to go directly to the spot of the accident and face it. After all, I would have to walk past it every single day, multiple times a day. Since then, I have continued to working on navigating the feelings I have about the entire situation. It has been interesting to see what my viewpoint is now.
While I will never fully be ok that this occurred and obviously wish it didn't, I find myself feeling grateful more and more for the change in perspectives that the accident provided.
I am grateful for being given the time/being forced to truly focus on my wellbeing and only my wellbeing for the first time. I am grateful for learning who the true support system in my life is and having the time to figure that out even if that added excruciating pain during the process. I am grateful for holding strong to the boundaries I had to set throughout the last year and for future years to come with my family on what I will and will not tolerate. I am grateful to be able to be back at work instead of sitting at home just wishing I was there even if it meant being stressed out. (Who knew that I'd actually be grateful for the ability to feel stressed by work chaos?! I am more grateful for the spirit days, assemblies, celebrations of student accomplishments, & wins in sports and/or organizations.) I am grateful for this injury giving me the opportunity to connect with my students in ways I would never have truly been able to understand. I am grateful for hearing aids that have improved my quality of life. I am grateful for the realization of the many times I have stood on a chair, table, etc over the course of my life and career that didn't result in injury. I am grateful for the fact that I will never look at a chair in the same way. I am grateful to be given the gift of another birthday when I know all of this could have resulted in much worse.
Going back to work, navigating the limitations that continue to exist and/or present themselves at inopportune times, in various avenues of my life, & dealing with the dysfunctional family relationships that opened up slightly after the birth of my nephew (the highlight of 35 for sure) has been draining for sure. I live in a permanent state of exhaustion. I am realistic to know that I still have a long way to go in my recovery process and am aware of the fact that the person I was before the accident isn't the person I am now.
I am looking forward to this year coming to an end and starting new. 36 is going to be a much better year for me! It has to be, right?!
18 reactions •
6 comments
Sometimes when I can’t stop racing thoughts, I get bad headaches, not sure if anyone else does too? What in particular leads to a headache when thinking too much?
If anyone :) knows maybe the scientific or psychological reason for it. Sorry if it’s a silly question. Was just curious if others get these too sometimes.
On really awful days I can spend literal hours or full day (s)
Not being able to stop my extreme thoughts and ending up with bad headaches or depressive thoughts.
2 reactions •
1 comment
Multiple Health Challenges
November 24, 2022
This year is very different because this month I was diagnosed that I have Parkinsonism. One of the symptoms is having balance issues but I’m stubborn and Monday I was out hiking (with my trekker poles) and I fell …hard. I had another fall a month ago. The first one I injured my shoulder but I didn’t go to PT yesterday because I felt light headed and kind of fuzzy and I have had a weird headache continually after the recent fall. It’s different than the headaches I get with the debilitating migraines I have been dealing with from Covid Long Haul. So I fear I may have a concussion. One more health problem, but it will fade. I can handle it…because I share this writing at a time when despite today’s challenges I feel very blessed because I survived so much from dealing with AIDS. PLEASE READ BELOW.
The day before Thanksgiving this year will mark the 35 year anniversary of when I was diagnosed HIV+. Every year when this time arrives I question why I am still here. Although a part of me can celebrate my life and be so thankful every year for having another year, another month, another day still being here, I am also sometimes consumed with guilt … Survivor’s Guilt. “Why me?” Why me in an opposite sense. Not why me… why did I become HV+? But why me … why am I still here and so many others are not? I am part of a small minority who made it through the 80’s when AIDS was considered a death sentence and are still around to talk about it.
Today many people call me a “Long Term Survivor.” They tell me that it is a miracle that I am still alive, and they honor my life and fighting spirit...but in the mid to late eighties I didn’t think of any other title than that of being HIV+. In most people’s eyes or interpretations I “had AIDS.” I had choices to make but none of them projected to the foreseeable future or even held out hope. I just developed a close knit support group of friends and family and then joined a very special group. We were a support group of HIV+ people who came together to listen, share, understand, support and love each other in a way no one outside the group could ever imagine, could ever believe… could even fathom. No one other than us could feel our pain and worry that was so thick you could feel it in the air in the rooms whenever we met.
We talked of our fears: of death, of pain, of hurt and how some of us were dealing with loved ones who did or did not know our plight, did or did not support us. We talked of our community that so many folks in the public could never understand. Those who misunderstood us, misunderstood HIV & AIDS, and harbored fear themselves often ran from us, judged us, judged our current and past actions, judged who we lived with, who we loved with, and later who we were dying with. The MIS-understanding in the public eye was so vast, so strong and so wrong that it made living and fighting off dying with HIV even harder. To say that there was prejudice is an understatement, to say that there was hatred was a sad reality, to say that there was fear was dead on accurate… lots of fear… and most of it fear of the unknown. People partly told themselves what they wanted to hear because there were very little facts. People displayed their fear outwardly or let it fester internally, but we were the human beings living in the bubble, inside the fishbowl.
People assumed we were all gay or drug addicts. These were obviously misconceptions sometimes, but it was so much easier for some people to pigeon hole us so that they didn’t have to include themselves, including the possibility that they too may become HIV+. There were many who even felt that we “deserved” our (possible) death sentence and were callous and cruel beyond explanation, and their feelings often spread. It was easier to fear than to accept, to hate than to love, to judge than to try to understand.
At our meetings we shared horror stories: of families, partners and friends who turned their backs on some of us and completely walked away (in fear, anger, judgment and often just to protect themselves in their minds). We talked of some doctors in the medical field from the military to the public who saw HIV+ patients wearing yellow hazmat suits and operated inside of plastic confines to take care of their patients… out of obvious overblown fear. We talked of hospital rooms with bright neon signs at the doors of our rooms announcing our reality to all who entered – sometimes even family and/or friends who didn’t know of our diagnosis beforehand. We talked about side effects and weakness, and living while we were dying and dying to get over the pain of living. We often were outcasts and misfits if for no other reason than that it was easier to see us that way than to have to absorb the truth… and there was no one accurate truth… there still isn’t to this day.
I am blessed to still be here today. It is easy to question why, and it can be very hard to have to process these reflections. So, the day before Thanksgiving is my anniversary. It is impossible for this holiday to come and go without my being reminded that I was diagnosed that day in 1987… 35 years ago. I later figured out that I contracted the virus in 1985...37 years ago. I am strong and vibrant today and my “numbers” are very solid. My T-cells have risen back up from the very low numbers I had in 1997 and my Viral Load dropped from the highest number the tests could determine down to undetectable 23 years ago and have stayed the same.
Yes, I made some calculated changes as to how I was living my life and yes I have a fighting spirit, but some of it also has to just come down to luck or divine intervention, depending how you see things, which way you believe things. I think I am blessed and the God of my understanding has looked over me. Why? I am not sure. Maybe I will be able to accomplish some things, to give back, to take my experiences and by sharing them make a difference in people’s lives. Or maybe I am just still around because I have been hanging on. Today I am not sure. Today I honestly don’t know if I have to be sure. Today I am alive and in the simplest of terms, every breath is a bonus. Today I continue keeping my commitment to tell my story, to help paint a real picture that may change some viewpoints, to answer any and all questions no matter how personal they are in an attempt to be transparent, honest and true… and today I appreciate the opportunity to do so!
So, in retrospective sadness and current pride, I look forward to this anniversary every year and want to honor the spirits of those friends who I lost from those support groups, to honor those who I never met who shared our path, to honor all those hundreds of thousands of people who died along this path right here in the United States and millions around the world. So many of them became such good friends and I mourn their loss…
Moshe Mark Adler
November 27, 1999
May 24, 2021 edit
UPDATE: In this time of Covid, sadly I recognize death tolls like those from another pandemic: AIDS (with no vaccine even after almost 40 years). I looked them up...the numbers, including current ones, are staggering:
690,000 [500,000–970,000] people died from AIDS-related illnesses in 2019. 75.7 million [55.9 million–100 million] people have become infected with HIV since the start of the epidemic (that we know of). 32.7 million [24.8 million–42.2 million] people have died from AIDS-related illnesses since the start of the epidemic.
#ChronicPain #PeripheralNeuropathy #BackPain #Headache #Migraine #COVID19 #covidlonghaul #Disability #MentalHealth #Depression #BipolarDisorder #Bipolar1Disorder #Bipolar2Disorder #TheMighty #MightyTogether #MightyMinute
34 reactions •
7 comments
Sometimes you wonder where stress comes from, and stress can make your muscles tense up. Enough stress can cause a headache or migraine. A day without stress, I wonder.#stressfree #Stress #tension #muscles #MentalHealth
1 reaction Multiple Health Challenges
November 18, 2022
We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.
It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.
Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!
I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.
You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!
#Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
#Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether
.
2 reactions •
5 comments
“Did you get car sick as a child?” he asked as he read through the pages of papers I had filled out before meeting with him.
I was sitting in the office of a top neurologist at Massachusetts General Hospital for a second opinion about random systemic neurological symptoms I had been experiencing. None of my doctors could determine the cause. My allergy doctor said they were neurological and the neurologist I had seen said they were due to allergies.
“No. I mean, I sometimes have a hard time reading in the car, especially if it’s too hot or I have a headache though.”
He looked up at me for the first time since I handed him the papers. I could tell by his frown he didn’t like my answer.
“What do you think the word carsick means?”
I told him how my brother used to get sick every time he rode in the backseat or if we drove for long distances. In my mind, that was what carsickness was. He asked if my brother got migraines and I told him I didn’t know and wondered why he cared.
I would learn that not only was he a top neurologist, he was the region’s top migraine specialist. And the reason he was asking so many questions about my questionnaire was because I had been experiencing headaches almost daily since I was a teenager. I had written a lot of information in that section of his paperwork.
He went on to tell me that carsickness in children is a predictor of migraine in adults. Motion sickness, which is what carsickness is, happens when the signals between your ears, eyes, and sometimes your feet get crossed. It’s similar to what you experience when you have vertigo and if you suffer from Vestibular Migraines.
Some children who suffer from carsickness will go on to experience migraines during childhood, but not all. And women who suffer from motion sickness might find they experience migraines too. According to Timothy Hain, M.D. an otoneurologist and professor at Northwestern University Medical School, “Girls usually start getting migraines around age 12, when puberty kicks in. There is another peak at age 35, then a second peak at age 52, around the time of menopause” (www.nbcnews.com/health/health-news/adult-onset-motion-sickne...).
“What helps you when you don’t feel good in the car?” he asked. I thought we had moved on from carsickness, and headaches, but he wasn’t done yet.
“Not looking out the windows. I have to keep my eyes forward and only stare out the windshield. And I never ride in the backseat.” Even as the words came out of my mouth, I realized I had been managing carsickness my whole life without consciously knowing it.
After a long appointment that resulted in a hereditary migraine disorder diagnosis, I went home and made some phone calls. It turns out my brother gets ocular migraines, where he loses his vision but doesn’t get an actual headache. And my father, who I knew had migraines when I was growing up, told me that he didn’t have motion sickness but my grandmother did, and she suffered from migraines her whole life.
Headache is one symptom of #Migraine among a list of many. If your child suffers from motion sickness, it is worth watching to see if they develop migraine symptoms. Pay particular attention at the onset of puberty when hormones rise and fall. Talk to your child’s doctor about a plan for how you will treat their migraines before they start. And remember, migraines can begin at any stage of life. If your child suffers from motion sickness, they should know that migraine is possible in the future.
When you have a mental illness all you want to do is be lazy and stay in bed all day, gradually get up and watch tv. Skip brushing teeth then flossing then mouth wash, that's just too much right. We take me for instance sometimes it does feel like a chore! But I paid $1000's of dollars restoring my teeth back to ok health they will never be at 100% anymore because I was to lazy to keep them up as a child growing up.. Let me tell you brushing is not enough, you have to floss if not every day then minimum 4 to 5 days out of a week.. If not food will stay between your teeth and cause cavities and eventually decay. Then your dentist will still needles in your mouth to numb your gums and drill around sawing down your teeth attempting to repair them. I for one know that is a headache you don't want so, treat your teeth as important as your wallet to have and your cellphone before leaving the house when going to work or shopping, you teeth are even more important than those. Happy Smiling.
A vicious cycle develops of noticing a sensation or learning of an illness in the world, misinterpreting it as threatening, then becoming anxious, and finally going to the doctor for reassurance. Reassurance from the doctor reduces the anxiety and brings relief temporarily. Soon the cycle starts again.
SENSATIONS : Any physical symptoms you’re experiencing such as muscle spasms, shortness of breath, lumps you hadn’t previously noticed, and headaches. What could they be?
PERCEPTION : The sensation you’re experiencing being somehow different to others. For example, the headache or muscle spasm lasting too long to be “normal.”
UNCERTAINTY : Asking yourself why with no resolution. Why do you have a headache when you’ve just woken up? Why has your eye been twitching for days?
AROUSAL : Coming to the conclusion that the symptom must, therefore, be the result of a serious illness. For example: If my headache has lasted for a couple of hours and I’ve avoided my phone screen and it’s still there, I must have an aneurysm.
CHECKING : At this point, you’re so aware of the symptom you need to keep checking if it’s there. You’re hyper-focused. For a headache, this could mean putting pressure on your temples or rubbing your eyes too hard. This then exacerbates the symptoms you were worried about in the first place and you’re back to square one.
You can refer to this:
Latest
