medical ptsd

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Medical PTSD and ME

Journal entry:

From very early on, I was a pretty sick kid, until I was diagnosed with anxiety. From then on in my medical journey, almost everything has always come back to being explained as anxiety or just a symptom of anxiety. Most of my symptoms haven't even been explored because of this and it makes it hard for me to feel heard and believed. I also don't feel comforted by the words of a doctor who doesn't order any tests to see if it could be anything else.

I once asked my doctor, back in Florida, if there was anything else the symptoms could be other than anxiety and all she said was, "we can't test for anxiety." I don't feel like that was what I was asking but I left it at that. I stopped going to that practice after multiple bad experiences... During my time there, I had an infection ignored until it got so bad they finally put me on antibiotics after the second visit, I was called a drug addict and threatened to take off my .5mg of Xanax I had been on for years for my panic attacks (and subsequently was banned from them). Why did they think I was an addict? I simply asked to refill my order... the doctor said they'd run tests first to make sure I wasn't abusing them... .5mg.. that's such a low dose and I wasn't asking to renew my prescription early or anything. I sometimes even refilled late if I didn't need them as much that month... To be fair though, I now haven't had any Xanax for a couple of years and I still have panic attacks but I've learned to manage without them by living less of a life. Sometimes I wish I had something I could take when I experience them, but I always make it through. Maybe they were a bit of a crutch. That's just not the way to learn you're using them wrong if that's the case. I may have needed to be better educated, but not accused of being an addict.

Thinking back, I remember being practically scolded as a kid for being sick and needing to go to the doctor. Doctors are expensive and my brother and I both had medical issues. I think my mom was just at her wits' end with the bills and my dad would just say "you're fine" and that I was overexaggerating... and I probably was as a kid. Especially seeing as my dad was a medic in the military, if I wasn't missing a limb, I was probably fine. As a kid, I just didn't have the life experience to not be scared when I'd get dizzy or sick. I now know I can get dizzy every day and push through the work week. I now know I can fall... hit my head on multiple occasions.. and be told by EMTs to just sleep it off (literally happened recently). Part of me is angry that I've had to go through those experiences practically ignored... and another part of me sees how resilient the human body really is. I guess I can see why doctors don't think much is a big deal. I just wish I didn't find these not-so-big deals terrifying.

Recently, and I mean this week, I had my medical PTSD triggered. I fainted this past Saturday and hit my head. I was so scared because this just keeps happening and I feel like I have no answers. I just want to know what I can do differently, whether it be medication or a better diet, to keep them from happening again. I'm already working on a better diet and had been when it happened... I do understand, now anyway, that it could be something so simple. And yet, until talking to some girlfriends of mine and then getting a nutritionist, I didn't know this. One of my doctors should have explored my diet sooner, in my opinion.

A couple of months ago... I took my partner in to see our doctor and I went with him into the appointment. It was almost a night and day difference in how I've been treated, it felt like. He went in due to "being tired" and having a harder time getting and keeping... you know, a boner. So, the doctor went over all kinds of things it could be, asked about his diet and mood and etc. Not only did he get a full blood panel workup (he had several vials of blood taken), but our doctor explained what he could eat for a better diet to give him more energy and he put him on depression medication.. all in one visit. I was so surprised.

So, I thought that when I called my doctor to tell him about another fainting spell and discuss with him what my nutritionist had relayed to me, he would know what tests to order. Instead, he said "I need to know exactly which tests to order... I can't just go ordering a bunch of tests, you're insurance won't cover it." I cried. PTSD overload. Fear turned into anger and I said to my doctor "you need to step up your game, you should know what kind of tests to order." His response was "you have to be more polite." I just broke down and cried uncontrollably at this point. He then huffed and said "fine" he would put in an order for all of the tests. By then, I was too triggered to go get them done.

I didn't sleep for 48 hours, I had flashbacks to being in the hospital and became irrationally afraid after lack of sleep of being hospitalized again. That was my PTSD hitting a crisis point.

Thankfully, after talking to my psychiatrist as well as getting some other stressors off of my plate, I was finally able to sleep and my mood and PTSD recalibrated themselves. It didn't help that one of my cats was and is sick and I had to take her to the vet and then I didn't have a good couple's therapy appointment all in the same 48 hour period.

I'm so so tired.

#PTSDSupportAndRecovery #PTSD #MedicalPtsd

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Creature inside my head

I live weekly sometimes daily with migraines and throbbing headaches over my right eye.. I have difficulty with retrieving words to complete my sentences. I am dizzy (vertigo) almost all the time. I live with overwhelming nausea and take antiemetics every single day. I have difficulty with walking & other motions. I make decisions almost without thinking about the consequences. I get confused easily. There’s a name for all this and more… an creature inside my head called an Arachnoidcyst or Arachnoid cyst.
Sure it sounds like something we’ve seen in a movie 🍿 once (or not at all if you have a phobia to spiders like my daughter). Whether you realize it or not (because a Doctor has dismissed it) it too may be living inside your head.
It all started with symptoms of tremors worsening (not related) and temporary paralysis on my left side of my body (again Doctor “says” it’s not related) hmmm…
My primary Neurologist (who knew the brain was so complicated that there are multiple Doctors to treat & observe it) just kidding…
Well he suspected a stroke (yikes) & ordered a brain and cervical spine MRI.
Results showed (in part) a pocket of fluid sitting on my brain as well as my pituitary gland (no biggie) I’m being sarcastic if you can’t tell. Of course I only got to read the generated data from an email with no explanation or call back (where’s the concern?) I literally was researching and typing in words I’ve never heard of before… Google define “asymmetric prominence of the right frontal extra-axial CSF space at the superolateral convexity level” (of course I had to break it down) My autocorrect couldn’t even handle me typing it in and I had to literally copy word for word to input into this sentence. Hope it made sense? It doesn’t to me but lots of things that used to be not problem for me are extremely difficult now. It must be “growing” (who is feeding this monster in my head?!?!)
To be continued (because I have lost my sense of where I’m going with all of this.. sorry not sorry) …

Oh yeah, anyone else living with a creature inside their head???

P.S. “for grins”
my actual MRI living creature in my head

#arachnoidcyst #Migraines #neurologicalsymptoms #RareDisorder #primaryarachnoidcyst #secondaryarachnoidcyst #Migraines #migraineswithaphysicalcause (not because of stress like my primary Doctor originally diagnosed) #medicalgaslighting #MedicalPtsd

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Have you ever had a doctor gaslight you?

Good morning! We have another question from the one-and-only Maya Lorde. While this topic can be a bit challenging, it’s one that, unfortunately, I’m sure a lot of us can relate to. I know I do.

Here's Maya's question and what she has to say on this topic:

Have you ever had a doctor gaslight you (deny your reality/discount your symptoms)?

I have had doctors try to tell me that what I am experiencing is all in my head and that I should talk with a psychologist. I knew there was an underlying cause that was being overlooked because the doctor was too lazy to look or was trained to think women’s illnesses are all in our head.

Has a doctor gaslighting you led to your PTSD? Do you feel unheard at your doctor appointments? Does it make you scared to go to the doctor?

#PTSD #CPTSD #MedicalPtsd #MentalHealth #Gaslighting

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How do you go back? #MedicalPtsd

Part of my CPTSD is the way the doctors dismissed my symptoms after an accident, leaving me in agony for years and vastly delayed rehabilitation for the spinal injury I sustained.
Each time I have gone to the GP (4 different practices in 10 years, hundreds of visits) for help with my mental health I have been treated with borderline contempt despite being a nurse myself.
My last visit 2 weeks ago was the 8th visit in 2 years asking for help with the CPTSD that they refuse to acknowledge. It took lots of work with my counsellor to book and keep that appointment and it was completely counterproductive for my mental health.
How do you find the strength to go back again? After this visit I really don't think I can go back again.

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How do you bring yourself to dill out an end of life packet?

I got mine in the mail yesterday just in case I turn critical before I can get to an out of state hospital with a specialist…. I got COVID in May and developed QT Long Syndrome so all psych meds stopped, except Elavil. June I had a stroke that left me weak on one side, not able to write or speak properly, or even more around well. Few weeks later I had a Dystonia episode that almost killed me. Elavil was stopped. My Gastroparesis was continually getting worse since COVID and because my heart meds are not option at this point. I now I have a PEG tube but still pleasure eat some. In two weeks I will be getting a PEG-J to completely by pass my stomach. I am in the hospital more than I am home so it feels like it. All I do is sleep. Life is hard and a long life just isn’t the cards anymore. My end of life packet came in the mail yesterday. Five Wishes. This is my PARENTS know my final wishes and planning a memorial service. It seems so backwards. I am only 33…. How did I reach this point? What did I do or not do? How in the world can I fix this when my state won’t even help me?! No idea how long I have to wait for Houston but my body is giving up and I am afraid I won’t make it to that appt. But I cannot bring myself to fill out this packet. Feels like giving up but my parents need to know these things….. #Gastroparesis #FeedingTube #CriticalCare #scared #how #why #doesitgetbetter #endoflife #longcovid #Stroke #LongQTsyndrome #HeartHealth #MajorDepression #Schizophrenia #Schizophrenic #Anxiety #PTSD #MedicalPtsd


Learning to accept my invisible disabilities and my road to becoming a health equity advocate this Disability Pride Month

I recently have been taking big steps (for me) to accept my chronic illnesses, including applying for disability, publicly identifying as disabled, and starting to speak publicly about my experiences with #medicalgaslighting and #MedicalPtsd that are not uncommon for women with autoimmune and / or neurological conditions.

I have been extremely isolated throughout the pandemic, and have faced a significant amount of retaliation for trying to hold local hospitals accountable to women, BIPOC and other stigmatized #ChronicPain patients. I have learned so much from the online chronic illness communities, and hope to pay the support and advocacy forward to other multiply marginalized women who are also struggling to get the health care and respect they need.

I would love to connect with other #ADA and #OCR health care activists, in particular. I’m sharing the first of my advocacy pieces below - reaching out to advocacy groups who will interview you and help publish your story is a great option for others who are also too shy to write for themselves. I hope to gain that confidence in myself over time, and look forward to building a community of support here at The Mighty!
Manisha Gupta, PhD - INvisible Project

Manisha Gupta, PhD - INvisible Project

From Scientist to Patient: When Health Care Equity Becomes a Personal Struggle
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In the hospital for an Epilepsy Study...turns out they are non- epileptic. So my doctor comes in and tells me the massive convulsive Seizures- are non- seizures. It was so invalidating, to hear her tell me it's all in my head to read that because it's non epileptic they just lable everything as abnormalities with normal brainwaves... then send you to psych like you are not physically presenting with something they clearly don't have the tools to detect or measure or even analyze. No Research has gone into this- I'm just left here wondering if they are going to keep inducing seizures never knowing when this study will end, and if I'm even being taken seriously because they trulyknow nothing. Nothing except its not the thing they know about. Epilepsy. So, oh well thats it. Hook you up to wires and call it a day, clearly nothing else must be going on if a person convulsive, contorting, spasming and restless in their own skin- their own brain if its not Epilepsy. Based on how they are speaking to me- I feel not. Like is that the only brain condition that can exist- well they decided it is- because their eeg can't figure it out. #inhospital #Epilepsy #presenting #nonepilepticseizures #PsychogenicNonepilepticSeizures #BrainInjury #MedicalPtsd #PTSD #CPTSD #Trauma

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Today, my friends and community, I’m doing a rare thing and asking for you to lift me up with your support for me today. #ChronicIllness #Pain

My doctor (PCP) laughed in my face at my treatment-resistant major depressive disorder disabilities last night at my appointment - it was a joke to him! He ridiculed me, demeaned me, and it’s not the first time he or other doctors were not a proper medical professional when I went to them for professional care.

This one last night did this all while throwing out new physical illnesses names at me that I probably have but needs to be confirmed by bloodwork taken last night.

So, I’m much sicker Physically now and once again I cannot go back to this doctor and I haven’t yet, in all these many years, been able to find one who is a compassionate human, let alone a professional who knows what they are doing.

It should go without saying that we deserve to be treated so much better and many of us just are not, and it shatters me for all of us.

This shouldn’t be in our hands alone to Warrior through because of disgraceful doctors that show us that they are numb and apathetic to what they took a professional oath to do and that they chose to go through many vigorous years of schooling to help us, not make us worse and actually hurt us.

We shouldn’t have to keep picking up our shattered pieces of ourselves and putting ourselves back together time and again because there are way too many people, including medical professionals, who do not have a moral compass. #MightyTogether #ChronicPain #Insomnia #ChronicFatigue #MultipleHealthChallenges #PTSD #Trauma #warrior #MentalHealth #mentalhealthmatters #MentalHealthAwareness #MadeVisible #Support #Depression #ChronicDepression #MajorDepressiveDisorder #TreatmentresistantDepression #Anxiety #MyCondition #MajorDepression #MedicalProfessionals #MedicalPtsd