Debilitating symptoms. Brain fog...extreme memory loss...spacey 24/7!
Posted , 640 users are following.
The last year of my life has been a brutal one. At the age of 22, I am in the lowest of lows and I desperately need some help!
Here’s my tale:
About a year ago, a couple months after an extremely strenuous relationship, I began noticing that I was tired all the time…and all around, I wasn’t really satisfied. Don’t get me wrong, I still enjoyed my friends, and activities…but life just wasn’t as bright and vibrant anymore after a month of noticing this ever-present fatigue, it got a bit stronger. I would wake up each morning completely zombie-mode…and that feeling would remain throughout the entirety of my day, until my head hit my pillow that evening.
Initially, I suspected some form of sleeping disorder. I set up a sleep study, got my thyroid checked, ferritin levels, all the basics. Sleep study revealed I sleep just fine and all my other blood tests came back negative.
The fatigue and the weight of the world slowly got worse over the next handful of months, UNTIL I woke up one morning and everything escalated greatly. I felt completely stoned. I couldn’t think right. I couldn’t concentrate. I felt inebriated. I felt totally disconnected and spacey. I felt as though I had no control over myself. I lost drive and motivation. I lost a lot of confidence. I always had an incredibly sharp memory. It was actually something well known about me to those in my family and friend circles. Yet, on this morning, almost all new information could not be retained. Things that happened earlier in the day, by evening, I felt they happened a day or two before. I could no longer recount the activities I took part in. This is possibly the worst of all the symptoms. The extreme short term memory. I have no context for time and I sort of feel like I’m just floating through life suffering.
For months I visited doctors getting tested by specialists. I visited a neurologist, infectious disease, I had an MRI, & I had about 20 different blood tests. NOTHING. My doctor literally said “I have no idea what this could be. I am beside myself” TOTES reassuring! I tried altering my diet entirely to organic and all natural. I continued my workouts and ran 15 miles a week. I tried sleeping even earlier. I tried all I could think of .
I have scoured the message boards and found a few people suffering from the same, but without answers.
I’m not sure if depression is the culprit, but depression sure has found its nasty venom-coated fangs into my veins. Tired, depressed, failed memory, no drive, scared…it’s no way to live. I want my life back.
PLEASE OFFER INSIGHT! I will be so grateful J
Sincerely,
Taylorsaurus Rex
54 likes, 1428 replies
jamie1234 TaylorMason
Posted
Here is a link to a great article on the subject.
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
lindathepinda jamie1234
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dawn19609 jamie1234
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Hi Jamie, I'd like this information. Can you please private message me? Thank you!
davidcupoftea jamie1234
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ZEN. TaylorMason
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Here is my contribution to the thread..
Six years ago my father was diagnosed with terminal cancer, I helplessly watched his decline including some incidents that were horrific and impossible for my brain and emotions to process.
My dad died three years ago whilst mum and I were sat by his side. I have suffered chronic anxiety for six years. Since dad died I have suffered really bad depersonalization where I have become detached from living a normal life and lost contact with some emotion and reality, it is totally like living in a dream but being awake.
I suffered with chronic health anxiety and the many physical symptoms that it provided which fed it including palpitations, migraines and pharyngeal spasm had brain scan MRI 6 endoscopys 1 gastroscopy 5 biopsies Heart scan and 24hr monitorr, dozens of blood tests all of which came back clear.
The brain fog, lack of being present, feeling detatched, spaceyness and poor memory is crippling, ontop of that I am on diazepam and sertraline and dont sleep well.
I have started 1-1 with a psycotherapist this week who feels confident she can help me out of this brain fog and help me to improve concentration and memory.
TaylorMason ZEN.
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Thank you for sharing! That's a really potent experience to go through. The fact that you're still plugging and doing your thing is inspiring to me.
samantha54778 TaylorMason
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I am so glad to know that I am not the only person who has this problem. I have had brain fog for a majority of my life. For years I had no clue what it was as a kid I thought I was just stupid or that I just had some sort of disability. I had a hard time connecting with people because I felt almost high. You have no idea how many people have asked me " Are you high?" and believe me when I actually am, there is barely a difference if any. I used to get so angry in school because
michael30415 samantha54778
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TaylorMason samantha54778
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destinyshere TaylorMason
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So i know this is all 3 years ago, I doubt anyone is even logging in this site no more or sees this but if you are and you do see this I hope things have gotten better for you.
I wanted to say that I had the same issues, i went to doctors to no avail. I found out the whole time it wa sa mild form of hypothyroidism that wouldn't show up until one day i fell asleep and didn't wake up for 3 days. Finally I been on meds since, however the culprit of it all, was GLUTEN. so gluten was causing my major focusing issues, memory problems etc.. I went to doctors for several years until finally someone figured out gluten was a big culprit. Wheats, oats rye malt barely and yeast. I was also allergic to a whole list of other foods that were foods i ate regularly. I changed my diet, to a mostly vegetarian, and vegan some days diet, and stayed gluten free, and it has helped me tremendously. Try looking up the grain brain. Grains,even if you dont test positive for gluten or wheat allergies, cause inflammation in the brain. and cause a whole sort of mental issues. Google, gluten causes brain problems, gluten causes adhd, gluten causes autism, gluten causes thyroid disease, gluten causes memory loss, or gluten causes dementia, just type those in, and you'll be shocked. Gluten free has helped me alot. But i still have issues because i still eat too much junk food. WHen i fast i feel fine. Ever notice when we haven't eaten fora while we feel good? Well its the food! When your body keeps eating the same diet we normally eat, it dont get a chance to recover, when your hungry, or haven't eaten for an extended period you feel good because your body dont have the toxins in it. So the doctor that saved me was a little old man, endocrinologist who suggested i adopt a mostly organic hippicrates diet that is gluten free. and he said if im vegetarian that i might as well just toss the eggs and dairy. Found out later i was also allergic to dairy and as soon as i cut the dairy (i still have sprinkles of parm cheese for flavoring but) and just ate yogurt plainwith a bit of fructose sugar, (is better hte processed, processed sugar also causes inflammation in the brain, as does alot of food) I felt tons better!! Instead of cofee no i go for morning walks and take deep breaths. If you smoke cigarettes or weed, that's another trigger! and that is a HUGE one. so get off the cigarettes!
TaylorMason destinyshere
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Thank you so much for sharing.
It's amazing that our diets can be the best medicines!
I'm happy you have found a road to healing!
TaylorMason
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It’s been more than 3 years since I posted this plea for help.
It seems like every single day I get a notification(s) in my email stating a user has posted a comment or sent a private message. Words don’t fully encompass my gratitude foe each and every contribution to this thread. I believe one of the most beautiful aspects is a group of individuals who have been struggling alone have been able to unite under one online roof to come bond. It’s nice not being isolated. Thank you to each of you for sharing your stories and experiences and helping one another cope.
And now, a quick update from yours truly:
After so much time and energy spent chasing and hunting answers with no resolve, I decided I would put all these symptoms on the back burner and attempt to pursue happiness anyway that I could find it. I met a lovely woman who I charmed and wooed and persuaded to date me. She is the sweetest girl I know with a heart of gold and unmatched empathy and understanding. At this time I also took a massive risk and left the comfort of a very secure /easy corporate job to hitch the solar bandwagon. I joined Solacity the largest solar provider in America as a door to door energy consultant AKA: salesman. (Glorifying, eh?)
You can imagine the fear in me at the time. With little energy and a lack of mental clarity approaching strangers on their door step to convince them to sign a 20 yr solar contract was a daunting objective. But, I knew a lot of money could be made and I was ready for a change. I aim to never let fear dictate my decisions.
After a year and a half later and tireless obsessive hours, I was promoted to regional sales manager of a 15 man team. It was a blast. We were making a difference, working hard, and having fun. All the while, my symptoms of fatigue chipped away at me little by little. The job was extremely strenuous….the money wasn’t as good as it should have been and the door to door channel just wasn’t sustainable. Elon Musk the CEO of Tesla ( electric car company) purchased SolarCity and recently cut the entire door to door division, and I lost my job. Thank goodness, I was planning to quit the same day I got this news anyhow. (HELLO SEVERANCE!!)
After 2 years of living together, I decided there were a number of factors that pointed at me staying with this amazing woman wasn’t the right thing for my life, so I told her we should take some time a part and pursue our destinies.
So the last few months have been a whirlwind. I’m currently serving at a restaurant so I can have a flexible schedule and make decent money. I am backpacking Europe with 3 of my closest friends in a few weeks and I have ambitious to pursue my greatest passion: Acting/Filmmaking.
I am full of hope as the future unfolds. I will reopen the mysterious case of brain fog soon, but for now…I can’t let anything stop me from becoming who I was always meant to be regardless of suffering. I am wiser now…more empathetic…and I use my energy wisely because it is precious to me. No more wasted words…no more effort spent on meaningless things. It has helped me broaden my perspectives. As much as I’d KILL for a miracle…I can’t say that I’m not also grateful for this illness. It’s forced me to grow in ways I never could have otherwise.
Cheers!
Taylor
michael30415 TaylorMason
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lindathepinda TaylorMason
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Meanwhile, as you have noticed, you caused one of the longest threads on the board, and indeed: we all have benefited from this. Thanks TaylorMason:-).
And thanks for taking the effort to let us know how you are doing. I wish you a great time as a traveler the next weeks (please record all of it) and, please (!) keep us updated on the rest of your journey!
jorytsmith lindathepinda
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Hello Linda! I wanted to reply to you as well as the OP.
I first noticed these exact symptoms along with others in 2006 or so. My main two were the brain fog and a rocking back and forth feeling. Others were bothersome but I figured it was all linked to having a few drinks on the weekend. In 2010 the episodes became worse and prompted several doctors visits with the always normal diagnosis.
In June of 2016 my potassium fell to dangerous levels and I went down for severe heat exhaustion at work. Went to the ER and was prescribed potassium supplements and returned to my normal day to day. A month later I was driving home from a job in Oklahoma and became severely disoriented and barely made it to the ER. All blood work was normal and they said I was having a panic attack. This lasted for another three days with me barely able to make it home to Houston. Over the next month and several more doctor visits I was sent to LLMD and was diagnosed with Lyme disease. I found your bite story very interesting. We do not have the blandfort fly here in the states but have one called a black fly that is similar. I have had several bites from these flies over the years and remember a spot like that on my neck a week before my problem in Oklahoma. I would love to chat About what treatment you are undergoing.
I apologize for my grammar but like everyone here I am in a really bad fog that I think has to do with the hurricane and low pressure here now in Texas. Look forward to hearing from y'all and discussing things that have helped!
ra7777 jorytsmith
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lindathepinda jorytsmith
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Hi Joryt, I hope you are allright, since you are in Houston?
Did your Lyme test show if you were infected recently or longer ago? I myself am not sure when exactly I got infected. In hindsight I had weird symptoms already before I was bitten by the fly or ticks (syncope, visual aura, palpitations etc.), but after that things definitely got worse quickly. Maybe I already was infected and had a weakened immune system and this was the stroke in the neck.
How are you being treated by your LLMD? I'm taking Lymax, a herbal formula, since a few months and it seems like I'm slowly improving, with the emphasis on slowly... I got rid of the 'anxiety' and the limp by now, which is encouraging I think, but my recovery isn't steady, symptoms wax and wane all the time but get gradually less over time.
There are no LLMD's here which I can afford so I have to find my own treatment. According to my GP and the lab he works with co-infections don't exist and I can't afford to do private testing, which is frustrating since I don't know if i should treat any. I will start with an experiment with anti-co-infection herbs soon, and see if it adds anything. Besdies that I'm taking a range of supplements like L-carnitine, B12, folate, biotine, high dose vit C, LDN etc. and I eat very clean and healthily.
I hope you did get rid of the anxiety thing, it's quite a scary experience isn't it? And expecially if one doesn't know yet it is something biochemical. I think it is appalling how eager doctors are to call symptoms like these 'anxiety', like that is the end of the road. It is 'raised cortisol' or 'activated stress system', which could have a multitude of causes, either physiological or psychological, which they probably find to complicated to investigate.
Again, I hope you are doing allright and didn't get flooded. Please let us know how you are doing!
PS Being foggy is the standard in here, so don't worry about that:-)
33cody jorytsmith
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Hey I was just wondering since I have.l very similar experience to you, when they diagnosed you with lymes did you test positive for it? Or did they treat the symptoms as a positive? I had 3 tests all negative but this all started a few weeks after being bitten by a tick, now I have been bitten by many many ticks in the past because I hunt and never had a single symptom but after that specific one this all started but because I tested negative the local drs wouldn't do anything more. I've read and been told by others with lymes that it's very easy to test negative and still have it. The other thing is when I was treated with antibiotics for the lymes initially(before my test was negative) the symptoms cleared up almost completely but I was only on them for ten days when the test came back they didn't extend the antibiotics. So about 9 or ten days after I ran out of antibiotics the symptoms came right back.
ra7777 33cody
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Hi Cody- You should find an LLMD (Lyme Literate Medical Doctor) who can accurately diagnose and test you. Tests can show false negatives about 50% of the time and many of the labs regular doctors use have tests that are not reliable. Aside from contracting Lyme when you get bit by a tick there are several other co-infections that can cause these symptoms as well that a regular doctor won't even test for such as Babesia, Bartonella, Rocky Mountain Spotted Fever, anaplasmosis, ehrlichiosis...etc
33cody ra7777
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Yea I'll have to, they are giving me the same treatment that they use for pandas at the moment as far as physc meds go and my physc dr basically is convinced givin my history and things its either lymes or a form of adult pandas she said adult pandas isn't recognized yet because they haven't had any cases on record that they can prove have it but she recommended a specialist on lymes as well, the problem is finding one close that is literate in lymes around me lol. I found one about 4 hrs away so we'll see. Thank you
ra7777 33cody
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Cody- You may want to go to Facebook and join a Lyme group. You can post where you are located and ask if anyone can recommend a doctor. Some of the Lyme docs aren't always listed as LLMD's
ra7777 lindathepinda
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