Please help, severe head pain, dizzy, lethargic, woozy, forgetfulness, impaired 24/7
Posted , 4 users are following.
I’m a 29 year old female with a tracheostomy due to a damaged airway following a prolonged intubation back in 2013 but otherwise healthy, well I was.
Since December last year I’ve had a severe headache, I call it head pain as I’ve had a headache when younger and it’s nothing like that. It never goes away but does change in severity sometimes. I have severe brain fog, I’m extremely lethargic and woozy, I call it drunk but in a horrible way. I constantly have to blink to keep my eyes open, I feel like I have to fight with my body everyday to keep my eyes open. But when I close them I can feel my eyeballs darting around inside my eyelids. I get a floating in the air sensation but not in a nice way. Can’t feel my body but can and unable to move. I stumble on words during sentences and I have trouble thinking of what I want to say. My head feels like it’s going to explode, the pressure and pain is intense. It feels like someone is pumping my head up with a ball pump. With my tracheostomy I have to cough to clear it and doing that increases my head pain and leaves me extremely dizzy. Everything I just said is the way I live everyday but I also have episodes that only last for half an hour or so where I’m almost incoherent, my eyes go hooded and I have to lie down or I feel like I will collapse, I get involuntary muscle jerks, my hands lock shut in a position, I’m barely able to talk and it feels like everything slows down like my breathing rate.
Ive had a brain MRI that showed nothing and I’ve seen a neurologist who unfortunately wasn’t helpful at all but in fact terribly disappointing. He specialised in MS so cleared me of that type of neurological disorder. I’m booked in for a full spine MRI scan plus a brain EEG scan in 2 weeks. I’m terrified, I no my own body and I can feel something is horribly wrong but struggling to find help. A head/brain isn’t meant to hurt like this for this long and living with my vision impaired all the time isn’t sustainable. Could this be a blood flow issue to my brain? Does anyone have any advice 
1 like, 16 replies
nicricho
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derek76 nicricho
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This might be of interest to you as Fluoroquinolone Toxicity Syndrome is one that doctors do not diagnose and accounts for many peoples similar problems.
https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305
nicricho derek76
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derek76 nicricho
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Jon8181 nicricho
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Dear Nicricho, as I read your post, took time digesting each word, by the end of your posts my heart was moved, broke but extremely angered at these doctors/Neurologists. I'm a 64 year old man and reading your post, for me, was more like reading a letter from my own daughter that's hurting, not only physically but emotionally, mentally, who's scared, anxious, upset that the medical community has not been able to help her and she's crying out for help. Nicricho, I'm not a doctor or associated with the medical community in anyway, but I will do my best to answer your call by the experience I've gained from my own health conditions. Over the past few years I've had multiple strokes, diagnosed with what's called Complex Partial Seizure Disorders and Simple Partial Seizure Disorders, I have Cerebral Small Vessel Disease, Cerebrovascular Disease. My seizures are pretty much under control by use of daily intake of medication, I don't have some now and then whenever I become stressed or made upset due to an argument or altercation. I have Chronic neurological disorders, that means they continuously occur, 7-days a week 24/7, they never go away, the only thing about them that does change is their intensity, there are four (4) of them and they've always been grouped together, why, I have no idea. I use my own scale from 1 to 10 on how good to how bad they are, and that can change from day to day or hour to hour, there's no way to predict, I can get up in the morning and they can be around a 4 then by noon they are a 7 then 30 - minutes later they can be a 10. The four (4) are DIZZINESS, BALANCE ISSUES, FALLING DOWN & HEADACHES. My dizziness isn't like normal kind of dizziness, it's like when a person is dreaming and in their dream they start falling and like in slow motion, my dizziness is similar to that. I never dealt with headaches my whole life but when this all started it kicked my butt. My wife has migraine headaches and her description lines up pretty close with what I've heard and read, my headaches are not migraines. Yes they can get intense to the point that they have kept me up for up to three (3) days. To describe them I can't and do them justice. There's only one thing different about my headaches, let's say I'm having an ok day and the four (4) horseman (that's my nickname for them) are riding at about a 5 but my spoiled 6 - year old begins screaming playing his video game and he doesn't stop and it goes on for half hour or longer, it could, not always, but it has triggered all my headache to go from a 5 to a 9, if it increases then all other 3 - horseman goes up to and if that happens I could, and it's happened, could send me into having a seizure. The Neurologist I saw last year said to me that he does not know why I have these 4 disorders. But because of new neurological symptoms that I've been having my wife and I pulled out and read the paperwork he gave us over again more thoroughly. He wrote in their a statement regarding my Gait. This was something we overlooked the first time but it was the Neurologists responsibility to go over and explain everything to me and take the time to answer all questions I had. He diagnosed much Gait (walking) as:
Wide-Based Ataxia. We researched what that meant. It means that a person who is diagnosed with this Gait resembles a person who has Cerebellar disease. So I took it a step further and looked up the symptoms for Cerebellar disease and I don't remember if there were a lot of different symptoms but four (4) of them sure did get my attention and they were, Dizziness, Balance Issues, Falling Down & Headachecs.
Nicricho, I wrote all of this for a reason, to give you some comfort that there are others who are going through similar health situations and have also had our share with doctors, neurologists, nurses etc who should find a different career path. But for right now this is about you. I'm glad to hear you will be having an EEG performed because I'm wondering if you are having seizures and if you are what type of seizures are you having. Epilepsy is another label for seizures as well. Also, as you said, you know your body better then anyone else. If you see any Neurologist or Medical Specialist and inside you don't feel comfortable with anything they are telling you continue to search out one that is willing to go through distance to turn over every rock to find out what's going on with you. You are young and have your entire life ahead of you, don't allow someone to steal that away from you because they are not willing to put in the time and effort into your case. Everyones created different so a one-diagnosis-fits-all is not the remedy. Please keep us informed of your progress.
nicricho Jon8181
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I’ll give you a quick background to understand how badly this is effecting my mental state and emotions. In 2013 I was on a ventilator for 10 days. Since I found out my airway was badly damaged during this time I’ve had 37 operations on my airway with 10 being major. I’m terrified with what’s happening to me at the moment as I’ve worked so hard battling to be here. I was diagnosed with severe depression back in 2008 and have dealt with a lot for a young person in such a short time. My mental illness has been used against me finding answers for my issues in the past 6 months. It seems easier to say it’s in my head rather than doing their job and helping me. I don’t no how I can “put on” severe drowsiness, hooded eyes etc etc. I have nothing to gain doing that either plus I actually want a healthy happy life away from doctors and hospitals. I’m getting worse not better, these episodes used to come and go but there hanging around longer and longer with no relief. I love fitness and doing my own gym work but I battle all these symptoms and they become worse while exercising to the point I stumble around after each exercise, my eyes shut and the woozy dizzy feeling gets so bad. I’m almost at the point where I can’t function, when I’m bad I can’t move from my bed because I can’t hold my head up anymore or fight to keep my eyes open.
I will continue pushing for help and searching for my own answers because I can’t live like this without strategies in place to improve function. It’s horrible I have to fight for my own care though, no one should have to. I feel like until something life threatening happens no one will understand, help or fight for me. I feel like a ticking time bomb and I just hope and prey nothing bad happens due to poor treatment and lack of treatment.
Thank you again for replying to me
Jon8181 nicricho
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Nicricho, my heart is absolutely devastated after reading all you have had to face in life at a time when one should be experiencing a variety of exciting adventures in their young lives. I coined the term our "TIME BANK." Other then leaving this life it's the only other thing that creates pure equality in this world. When we are born we are given a "time bank." It's a bit different then a regular bank, yes it comes with a free balance and withdrawal slips but it doesn't have any deposit slips for us. It's filled with our time we have been given to be here on earth and everyday we wake up is another day we use another withdraw of time, there's one difference, none of us know what our own balance is in our time bank, it doesn't matter who you are, rich or poor, black or white, even if you are terminally ill laying in a hospice bed, none of really know because a miracle could happen to anyone. But there is one person and one person only that knows the exact balance of every single person's balance in their "TIME BANK" who I met in August of 1991, His name is Jesus Christ and what He did for me then He's still doing today. I don't know your preference when it comes to spiritually, I'm not talking about anything religious because that's man's Interriptation, not mine, I'm talking about a pure relationship with the One who created me, you, everyone. If you already have met Him and like me to pray for you I will do that, if you never me Him but would like an introduction private message me, if you can't then I will send you my email address, if you are not interested at this time in meeting Him I will respect your wishes and continue to stay in touch just as we are doing because I'm very concerned for you and I would like for you to keep me updated with what's going on. Your health is important so anything I can do to help, even if that's to provide you with support I will do that. For me to understand and know what you are going through would be a lie, even if you and I had the exact disease, we are 2 different people who see and handle things just as different. But as my first message said, this is your life, find the right doctors, they are out there, don't settle and DON'T ALLOW ANYONE TO TELL YOU HOW YOU SHOULD FEEL OR ITS ALL IN YOUR HEAD!! You are your biggest advocate, be bold, I know it's hard to do sometimes, but I pray you will do it. They will be running new tests in a couple weeks please let me know what they find. Since they are doing the EEG they can have the test results back to you within 24-hours or less, they did the same test on me and within 5- hours after the test they diagnosed me with having Complex Partial Seizure Disorders and Simple Partial Seizure Disorder, don't allow them to mess with you. If you have any questions or need to talk about anything or just having a not so good day message me and remember one more thing, it's something I started to live by. I just started being tested for dementia. Yesterday is gone and I don't know if I have tomorrow but what I do know is I have "NOW" and I started praying for a lot of "Nows", I live for "NOW". Nicricho, you have "NOW" so make your "NOWS" count!!
Jon8181 nicricho
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Nicricho, good morning. I pray you are having a good morning today. You've been on my heart since the last message I sent you. First, I hope I didn't offend you in any way because that was never my intention. I have a daughter s little older then you as well as 4 sons that are ages 36, 39, 42 & 43. I love each one and respect them as their own individuals. The 39 and 42 year old are my step-sons, but I met my wife wife when the 39 year old was just 3- months old and the 42-year old was 3-years old. Their mother and I married two (2) years later, we've been married for 37-years. The 39-year old when I met my wife, like I said, was only 3-months old. His name is Damion. He was born with Down Syndrome. His dad, my wife's ex-husband, once he found out his son was born with severe Down Syndrome, left my wife in the hospital. Now I'm not saying he went out to get something to eat, he could not handle the fact that his son was mentally retarded so he made the conscious decision to leave and divorce her while she was still physically in the hospital right after she gave birth and they were both told the newspaper about Damions condition. My wife had to stay in the hospital for five (5) days after she gave birth to Damion due to complications, as well as Damion had to be air lifted to another hospital because he required emergency life-threatening surgery that only this other hospital could provide. So here is a young girl in her early 20's, she has a 3-year old son at home, she's at the hospital and just gave birth to a baby boy, which should have been a joyful moment, but learns he's Down Syndrome, severely mentally retarded, will not be able to learn to walk, feed himself, dress himself, don't anything for himself so her and her husband will have to care for their son for his entire life, my wife has complications so she's required to stay additional days in the hospital, their son has a life-threatening condition that if he does not have immediate surgery he will die, he's only 3-days old and the husband/daddy to show his love and support takes this opportunity to leave his wife and new born son literally in the hospital while his own 3-days old baby boy is being air-lifted and transported to another hospital, his wife is laying in the hospital bed, she's just laying there, sobbing and alone and without even a "good-by" or "it's been fun while it lasted" he physically leaves the hospital, goes home, packs up his belongings and leaves the city, the State, moves about five (5) States away, they get divorced and he immediately gets married again and starts another family. Let that sink in for a little while and I will write you the end of the story later.
ana85762 nicricho
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nicricho ana85762
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I’m extremely weak atm. Was in ICU last weekend on a ventilator for a chest infection. Can’t catch a break right now
ana85762 nicricho
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Ohh boy 😯im so sorry i pray you feel much better soon ..did they find out whats causing all of this ?? Im also suffering from neuro stuff and doctors have no answers its frustrating ...i hope you feel better much better ...sorry you are dealing with this at the moment 😯msg me anytime im here
nicricho ana85762
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Thank you 😊 I had a lung infection which is pretty common with a tracheostomy unfortunately but it’s made all my other health stuff a lot worse ?? Everything mixed together isn’t a good mix lol. I’ll be ok. Thank you so much that’s very kind. I hope you find answers too, the unknown is horrible Xx
ana85762 nicricho
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ana85762 nicricho
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how are you doing ??hope you're feeling better.
nicricho ana85762
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still much the same 😕 but losing weight now. Ive had diarrhea for over a year now and i guess ive just ignored it as my old GP didnt care. I did a stool test ages ago which showed nothing so ive just been putting up with it but its really bad and getting out of control, everyday but up to 5 times a day ill go 😕