It’s going on 2 years this coming May since my craniotomy to remove an AVM on my right front temporal lobe. I had to travel to have the surgery and fight with my insurance to pay for the surgery. Living in the USA, health care is terrible. Having an Hispanic last name, even though I’m not Hispanic has made healthcare worse for me. I’ve had no follow up.
I was retired for the past 3 years. Due to my professional licenses and the devastation that Covid19 has caused children of color in my city I was called back to work. At the same time I’m a FEMA student on call for mental health crisis/disaster. I’ve been very active busting my butt to flip our country blue. I’ve been asked to run for several offices on top of a host of other things.
A couple of weeks ago I was talking on the phone and at some point I could not speak words. Gibberish was coming out instead of words. This lasted 30 seconds.
My PCP said go to Ed. They ran numerous tests, 2 cat scans and an MRI along with all types of neurological and blood tests. They tell me that they found nothing wrong.
Since that time I almost divorced the love of my life, I’ve been a raving lunatic and then happier than I’ve ever been. Basically manic.
I have no idea what is happening to me and no one to turn to except you guys.
Shit, sorry to hear
Crazy? I don’t think so - under pressure & stress is more like it
Good that you at least got it looked at to get a real life idea of what’s physically going on - and it sounds like your health is still there
Sounds somewhat similar to what I experience every once in a while - when under heavy stress, symptoms can/may appear - as real as they get
When I was in ER last time, my neurosurgeon called it “resurgence”(I believe) - symptoms come back, triggered by stress, from being overwhelmed & so on
I can’t tell you to relax - it’s way easier typed & said than actually done. . . But, that’s kind of the direction you wanna head(from what it sounds like)
Life in our society kicks our ass - I’m going through it as the days pass. . . I can’t do the same work that I did last year before this all happened, or at least nowhere near the pace that I was doing it at. . . I also feel like my emotional support system is unfortunately close to nonexistent. Yet, I still need to find ways to financially keep up < that’s real simple
GL to you! And, us all
I’m currently saying goodbye to things I was involved with. Some I loved dearly. It’s been hard. I was working on childhood trauma when Covid19 hit. I had to stop. I’ve been in therapy most of my life and I’ve finally found someone that was getting me through to closure. Mental health professionals are slammed right now. I know this because I am one. Having all the answers doesn’t help when it’s you. You know the saying, doctor heal thyself”. Yea, it doesn’t work.
Firstly, great that the scans were all negative. That had to be great news. It sure sounds like you’ve been on a fast moving train through all this which seems to be our new world. A few years back I was working in emergency services in Northern Canada and we were evacuating a community of 4500, with very few resources. It went on for days and days, little sleep, not eating properly and not being properly hydrated. Just trudging forward and completely focused on the task at hand.
I called and spoke to my wife a few days in, she was several hundred miles away. She thought I had been drinking, slurring and not making a lot of sense. It was, for me, a complete reaction to too much for too long, stress, improper nutrition and hydration. I was focused on taking care of everyone else, and I rendered myself pretty much useless. I recovered quickly, but that is also 20 plus years ago when I was early 30s. The same recovery today would take a while, and hopefully end well.
That is my experience of being over done and a ton of stress I have learned that taking the time to take care of me is not selfish but by not doing that I’m unable to take care of others, to carry out my job. We are all so different, and this was me, but my reaction is sort of similar. Take Care, stay strong, and know we are here for you.
I just breathed easier reading your reply. Thank you.
Twist. I’ve been taking a HRT compound for years. It works well. This compound was developed by my GYN who was also a chemist and well versed in HRT.
He retired and a very old nice doctor replaced him. This doctor said “you can stop talking that any time”. Being an internationally credentialed substance abuse counselor for years that just sounded off. After my gibberish event I worried that maybe I should stop talking that meditation. I stopped. Once I felt like what it may feel like it must feel to have bipolar disorder. I’m still feeling like that even though I started slowly adding it back.
Health care in the US sucks.
Firstly congrats on tests coming back negative. I know how frustrating it is to have symptoms and nothing wrong. Been there done that (still going thru it…maybe I always will) and it sucks but the main thing is they are negative so that’s GOOD!
I can’t see properly, I have headaches, I have numbness, temperature issues etc etc. But like you, my tests are are good and there’s nothing wrong they say. And like many, I have no support network or family really at all
I am a big believer in mental health support and I would have said to find some help mentally but I can see your dilemma…both having the answers yourself but being unable to treat yourself but also no therapists available right now
Just a thought… since you’re in the field is there someone you know in the mental health field that could temporarily see you to give you some support? A colleague/someone you know in the field? I know it’s best to have someone you don’t know…but just temporarily? Even a few seasons… even one session to be heard
I fully agree STRESS can flare up anything and it appears you have a LOT going on and have done well. Maybe you’re too stressed and a little burnt out and frustrated and that affects everyone, probably more so people in our/ your situation
Is there ONE thing you could cut out of your life that could take a tiny bit of stress off you? Anything at all
My life has been utterly crazy the last 2 years! And in these last 2 years I’ve realised how much stress kills us in every way. That’s why I’ve done the only thing I could think of to lower stress. I still feel like utter crap and like death 80% of the time but at least it keeps me a little less stressed… somethings better than nothing right?
I wish you the best! And I hope things get a little better for you
I’m so sorry that you are having unexplained issues and no one close. I was working on childhood trauma when Covid hit. I’ve been working on that my whole life. I retired 3 years ago so that distraction is gone. People use work to distract from childhood abuse. Once you’re retired it all resurfaces. I was a school social worker for many years. The stress trying to save these children, I never knew that was what I was doing. I also worked as a rape and sexual abuse therapist. I’m in the middle of coming out the other end. My therapist finally called me today and we’re looking for an appointment. All therapist are slammed right now. I have a wonderful husband and others that are so sweet, like you. Thank you so much.
What you’ve done is a very admirable and worthy cause!
I’m sorry you’re dealing with issues and hopefully that therapy session plans out for you. I know how important they are to me so they would be for you too
When I had no choice but to stop work due to covid, yes things get worse in a way because you distract yourself with work. I found myself with nothing to do and no one to talk to so that flares things up
Just had 2 thoughts though. 1, if you think you’re crazy, you’re not you know what I mean I’m sure from your background in mental health
And 2, i just remembered i posted not that many months ago something similar to you not being able to think of words or saying the wrong words and trying to find a tool I was looking for but couldn’t and I had to ask someone for help finding it… only to realise I was staring at it the entire time
I was convinced I was either losing it or it was my brain issues coming back but it has subsided mostly and I think it’s either brain still constantly repairing and getting used to it’s new blood flow or some kind of underlying life anxiety/stress
Once again I wish you the best and hope you can get back to your therapy for some closure
Thank you. Your words are powerful for me right now.
I’m sure this is 99% stress. Anyone who is overdoing it can get into that state.
Pam,
I think if you know you can’t talk to a professional at this time, the things you could do perhaps are 1. talk here, like you have. I think letting some of this stuff out is step 1. Getting useful input as to steps to make is probably next but getting it out there I’m sure must be step 1. 2. find a friend you can talk to.
We had a TV programme over here recently about Roman Kemp, a young, good-looking, successful radio DJ (and son of Martin Kemp of Spandau Ballet) who struggles with his mental health quite a bit. He lost his best-best friend (his producer) last summer to suicide and one of the key things I learnt from that programme was to have a staged (=escalating) action plan, if I were a person at risk of suicide. One of the earlier steps on that plan is to have someone you trust that you can talk to. Doesn’t matter who it is, so long as they are someone you trust who you can talk to.
Does sound a bit bipolar, as you say. I don’t know what it is that drives bipolar but may be worth having a conversation about that if possible. I’m not at all familiar with bipolar but last time I said it out loud, I was right. That person eventually got some help and is in a much better place today than pre diagnosis.
You’re not crazy but it does sound like you’re doing WAY too much.
… Please take these as somewhat random thoughts and I hope that maybe one of them could be of use.
Very best wishes,
Richard
You are not crazy. 3 of 6 doctors will not even touch my pelvic avm. It has doubled in size in past 6 years. Last 10 years I been feeling like I’m making up a lot of symptoms.
Now I realized my issues are real and very rare. So I came to live with what I have been dealt. I have a wonderful and supporting wife, though she has been through more than anyone should.
Many symptoms may seem unusual or may not seem relevant. Every one is different and they ARE real. Try and stay strong and never give up or give in.
Most avm’s are rare and not a lot of data so many doctors won’t have answers.
Thank you. Stay well.