Hi, my name is head86. I'm here because I have had 6 episodes of transient expressive aphasia that I believe are caused by migraine, although a number of neurologists are trying to convince me that they are being caused by TIAs. The aphasia symptoms do not last longer than 60 minutes during each episode. I have been trying to find a neurologist that can make a clinical diagnosis in determining whether these episodes are migraine related or symptoms of stroke.
1 reaction When I had a stroke, my life changed overnight. I lost my independence, my strength, and, unexpectedly, many of my friends. The people I thought would be there for me slowly disappeared. Some didn’t know how to handle my condition, others got busy with their own lives, and a few just faded away without explanation.
At first, the isolation was unbearable. I was dealing with paralysis on my right side, struggling with everyday tasks, and trying to process the reality of my new life. But what hit me the hardest was the loneliness. The silence. The absence of those I once leaned on.
## Turning to the Internet for Connection
In my lowest moments, I found myself scrolling endlessly through my phone, looking for something—anything—that would make me feel less alone. That’s when I realized that the Internet could be more than just a distraction. It could be my bridge to the world.
I started reading about others who had gone through similar experiences. I found people sharing their journeys through stroke recovery, their struggles with aphasia, and their battles to regain mobility. Seeing them push through their challenges gave me hope. If they could do it, so could I.
That’s when I made the decision: I would start sharing my own story.
## Why I Chose to Post About My Life
1. **To Combat Loneliness** – I had lost many of my friends, but I didn’t have to be alone. By sharing my experiences online, I found a new community—people who understood my struggles and supported me even from a distance.
2. **To Raise Awareness** – Before my stroke, I didn’t know much about stroke recovery, aphasia, or the mental toll it takes. By sharing my journey, I hoped to help others understand what survivors go through and maybe even educate those who still had their health.
3. **To Help Others Like Me** – When I was searching for guidance, the personal stories I found online helped me more than medical articles ever could. I wanted to do the same for someone else—be a source of encouragement for others who felt lost after a stroke.
4. **To Keep My Mental Health in Check** – Writing and sharing became my therapy. It gave me a sense of purpose, a way to express my emotions, and something to look forward to. Instead of dwelling on what I had lost, I focused on what I could build.
## Finding a New Kind of Friendship
The Internet became my friend in ways I never expected. Through my posts, I connected with stroke survivors, caregivers, and even complete strangers who just wanted to offer kind words. I built relationships with people across the world—people who checked in on me, shared their own experiences, and reminded me that I wasn’t alone.
It’s not the same as having friends physically around, but it’s something. And sometimes, that “something” is enough to keep you going.
## Moving Forward
I still miss the friends I lost, but I’ve also gained something new—a sense of community that stretches beyond physical boundaries. If you’re feeling isolated, if life has knocked you down and you feel like no one understands, I encourage you to reach out. Share your story. Someone out there needs to hear it.
I know I did. And I’m grateful that I found voices like mine when I needed them most.
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Hi, my name is mike1957. I'm here because I suffer from painless migraine auras with vertigo and recently the arrival of transient aphasia too. I take Propranolol but gradually this condition is getting the better of me and limiting my lifestyle, slightly worried and slightly scared. Does anyone in a similar scenario have an effective coping strategy or any suggestions? Thanks.
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This will be long, sorry about that.
In 2020, I filed for Disability with a law firm in Colorado, and it turned out to be a nightmare. They ignored my calls and emails for years, and when my court date finally came, they didn’t have the necessary documents prepared, despite my repeated attempts to check in. For months before the hearing, I reached out, made sure they knew what was needed, and was reassured everything was ready. But when the time came, I was the only one on the call to explain my case. My girlfriend took time off work to be there, but she wasn’t allowed to join. I lost the case. That was almost a year ago. They filed an appeal, but I haven’t heard a single word from them since. At this point, it’s clear I need new representation, someone that actually cares. They admitted to managing 10,000 cases with only two attorneys, which tells me they prioritize easy wins for a quick payout and leave people like me behind.
In 2017, I was thriving—managing multi-million-dollar IT projects in Colorado. Like many people, I thought buying a house was the next step in life. That’s when things started falling apart. A few months after moving in, I began experiencing inexplicable neurological symptoms. For over a year, I saw multiple doctors and specialists, but they found nothing conclusive. Eventually, one doctor told me my symptoms were all in my head. I even asked if it could be mold in the house, but he said there was no reliable way to test for it and that mold wouldn't explain what I was going through. My condition deteriorated to the point that I attempted suicide—luckily, I survived. This, and the fact that my girlfriend’s dog died after living in the house for just a few months, sparked my determination to find an answer.
Eventually, I found a holistic doctor who specialized in mold toxicity. When we met, without knowing my story, she began describing the exact experiences I had been living through. It was uncanny and validating. For the first time, I felt like someone understood what was happening to me. She explained that testing could measure certain markers for mold toxicity and environmental sensitivities, and I began an intensive detox process that was supposed to take two years. I had to sell or get rid of everything I owned and moved into a new apartment in January 2020 to escape any possible mold exposure.
Two years into treatment, I wasn’t improving as much as expected. After testing my new apartment, my doctor said the mold exposure was “borderline.” But I was still feeling small improvements, so I kept going, believing I was on the right track, even if slower than anticipated.
Sometime later, my girlfriend got a major promotion, and we moved to Minnesota. By this point, I was starting to feel around 70-80% better. I was still not 100% as I still had this thick brain fog, but I optimistic about the future enough to start scouting placed I’d like to apply for work. I did have this persistent headache, but I was told it was likely just allergies to the new environment. However, after a few months, my original symptoms were back in full force—severe brain fog, insomnia, aphasia, anxiety, depression, and even uncontrollable rage that led to self-harm. I later learned there was a leak in the building that extended from the 4th floor down into the underground garage—I could hear the water dripping in the walls. So, we moved again, this time to a newly built apartment, hoping to start fresh in a clean environment. Unfortunately, I wasn’t able to sell everything this time, but at least I thought the new place would be clean.
We’ve now been in this apartment for about a year, and for a time, I was feeling much better. Friends and family even commented on how much I’d improved when they saw me. But after returning from a trip away, the headaches and sleeping issues started creeping back. When I asked the property manager, I learned there had been recent water damage from a roof leak in the apartment next to ours—right above my bed on our shared wall. And now, just like before, my symptoms are creeping back, and I’m losing hope.
I’m trapped. I can’t go live with my parents or any friends. I still have some medications, but Medicaid doesn’t cover any of what I need, and I haven’t been able to work since 2019. This illness is not who I am. I used to be active and helpful, but this has broken me.
If I could win my disability case, I could afford a clean place to live, get the medications I need, and begin working again. But if nothing changes, I don’t know where I’ll end up—maybe living in a tent just to breathe clean air.
I need help. My therapist, who saw me improve over time, has since left his practice, and now I’m back to square one trying to find someone who can advocate for me. This isn’t psychological—it’s physical—and I’m determined to recover and get back to work.
I consider myself lucky. Before this illness, I had a prestigious career and a stable life. Many people who suffer from mold toxicity don’t have that background, and it’s even easier for them to be dismissed as crazy. I know that with my history and my determination to work again, I can be proof that this illness is real and affects countless people. I’m certain many who have been written off as mentally ill, who have committed suicide, or who have lost everything, were suffering from mold toxicity and never got the help they needed.
There’s real research supporting the neurological impact of mold and environmental toxins. This study shows how exposure to these toxins can cause brain fog, cognitive impairment, and fatigue, validating my symptoms.
https://pmc.
I'm breaking this link because I don't want it shown as a thumbnail but just take this out
ncbi.nlm.nih.gov/articles/PMC7231651
Mold toxicity is still relatively new in the medical field, much like fibromyalgia was once dismissed. Doctors don’t fully understand the neurological impact yet, but research is starting to reveal the connection. I believe that in the coming years, this will be as widely recognized as fibromyalgia is today.
What I need now is someone who understands or wants to learn this illness and is willing to help me. If there’s anyone studying this who can take me under their wing that can provide a clean place to live, I can be observed as I recover. I’m sure that my recovery will not only change my life but can be used as a way to help countless others. I know I could turn my experience into something positive and advocate for those who are suffering in silence.
I’ve been lucky to survive this far, but I need help to keep going. I’m so close and the longer I stay here, the longer it’ll take me to recover.
Thanks for reading, even if it’s just informational.
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If you have endured the struggle of chronic migraines and headaches, you know firsthand how awful the experience is. There is a lot to unpack when it comes migraines. For example, simply the anxiety of not knowing when the next attack is going to happen can be paralyzing for some. Or, the impact that chronic migraines can have on relationships. For others, it may be the frustration of people not being able to see their suffering on the outside, so they doubt you, or the severity of this experience.
What people don't often know if they don't suffer from migraines is that the experience of a migraine is an entire event. It's far more than just a headache for most. Many people struggle with auras (seeing visual flashes or patterns during an attack, being sensitive to light and sound, et al). Some will become confused and unable to speak or think clearly, a sort-of temporary aphasia. Vestibular migraines can cause issues with balance, walking, talking, or vertigo, and more. Each person's experience of migraine varies from one to the next (and triggers also vary), which is part of the reason that medical professionals have found it hard to treat and cure migraines. There are more options available nowadays. But, for many, it's still not enough.
Chronic Migraines and Chronic Pain: More than a medical issue
In my practice, I've worked with many people who struggle with chronic migraines and headaches. While people often tend to believe that migraines and headaches are purely a medical issue, chronic pain has a long history of being linked with mental health, as well. The two -- medical and mental health -- are often intertwined when it comes to the experience of chronic pain. Sure, sometimes migraines and headaches can have more of a medical origin. Such as the result of a traumatic brain injury, or hormonal shifts, et al. However, it's also become known that people can be born with a predisposition to migraines or headaches (genetics), and then events in life can trigger it.
For many, these pain triggers can be heavily tied together with mental health.
Chronic pain goes beyond just headaches and migraines. It can be back pain, or Irritable Bowel Syndrome (IBS), digestive issues, and more. Stress, for one example, can cause unpleasant shifts to happen in the body even for people who aren't predisposed to an issue. Think of the times you've been stressed or anxious and experienced the tension in your body, or mouth drying up, body temperature increasing, stomach churning, head start to hurt, your upper back and neck starting to tighten, chest tightening, higher and more rapid breathing, etc. Not only stress and anxiety, but anger, depression, or various types of trauma (not only large traumas, but a series of relational traumas, such as bullying) can have an impact. The body not only responds to present stimuli and triggers, but the body has a way of storing old experiences when they are not emotionally processed. This storage of old emotional experiences can often trigger chronic pain into effect when the emotions either build up enough in the body, or when they call back to a parallel experience (and/or can exacerbate what's already possibly present medically into greater severity or frequency of attack).
Therapy as a treatment for Migraine Headaches
The interconnection between medical and mental health is actually positive for many. This means that people who struggle with chronic migraines and headaches have more options available to them than only medical. I have seen people reduce their frequency and severity of chronic migraines and headaches through therapy. As people, we store so much of our emotional experiences and carry them often without even knowing it. Eventually, we can't overlook them anymore when we start to feel these stored experiences. You may find yourself suddenly experiencing anxiety and panic attacks, or constant body stress, or physical and mental overwhelm that never used to be so present. The same goes with chronic pain.
For the sake of clarity, I'm not suggesting that everyone's chronic migraines are mental health related, however I've seen that it's also commonly the case that medical and mental health works together for chronic issues that don't have an otherwise clear medical explanation. Similarly to how depression can often be helped most by a combination of medication and therapy, I've seen with chronic migraines and headaches that a combination of neurological treatment and deeper psychotherapy can be more helpful than many might realize.
Unfortunately, one of the most difficult stigmas I have seen is the fear that acknowledging mental health triggers for migraines will somehow indicate that the migraines are "all in their head". Something many migraine sufferers have been told throughout their lives, which has been traumatic and dismissive of incredibly painful and lonely experiences of suffering. However, the struggles, the pain, the torture, the accompanying emotional and life impact is all very real. The underlying causes for these struggles, however they are triggered and reinforced over time, is what needs the attention and can ultimately lead to relief.
#Migraine #ChronicMigraines #Headache #MentalHealth #ChronicPain
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Hi, my name is Deannabobanna. I'm here because I’m struggling with moving forward and dealing with physical and mental trauma.
#MightyTogether #Anxiety #Depression #PTSD #ADHD #Lupus #Aphasia #complexpost-traumaticStressDisorder
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There are pros and cons for when someone famous comes out about a diagnosis they’re facing — no matter what it is.
On one hand, it’s encouraging for awareness efforts — a lot more people are likely to know about a condition (for instance, when Bruce Willis disclosed his aphasia dx). But on the other, it can sometimes bring about a false sense of understanding as celebrities have access to top doctors, procedures, and medications that a lot of us non-famous people don’t have.
Here’s a new story we published about Selena Gomez’s new documentary that details her experience with bipolar: Selena Gomez Tackles Mental Illness in 'My Mind and Me' Documentary
Thoughts?
#MightyMinute #ChronicPain #ChronicIllness #RareDisease #Disability #EhlersDanlosSyndrome #BipolarDisorder #MentalHealth #MultipleSclerosis
Does anyone else suffer from aura-dominated migraines? I mean where the aura is the bigger issue than the pain. I mostly get strange, disoriented vision but sometimes see zigzag lines and blind spots. The visual auras last around 20-30 mins. If I get a headache at all, it’s a mild-moderate pain in the brow bone. When the auras a bad, I sometimes get a stage of aphasia afterwards-where I can’t call words to mind or finish my sentences. That also lasts about 30 mins. Frequency is once a month at the mo but I can get 3 migraines a week and last year I had a wonderful migraine-free 5-months but, frustratingly, I can find what made the difference.
GP has prescribed Zolmatriptan orodispersible, which does seem to help (even tho triptans are not supposed to help auras). I’ve also found Magnesium helps lessen the frequency and Co-Q10 has helped me get fewer zigzag line auras. Taking Riboflavin didn’t seem to make any difference in my case.
#Migraine
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