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Hello, I have been feeling unwell for almost 8 years now and things are getting to the point where I feel like I am dying. I do not know what is going on with me, so I am posting with the hopes that someone will recognize some of my symptoms and possibly identify what I might be going through. I am desperate and appreciate any and all comments.
In the beginning when this whole thing started I was having problems sleeping at night and spent most of the days in a complete fog and almost disoriented from the lack of sleep I believe. I was put on Ativan for a week to relax me and help me sleep. After I caught up on my sleep I remember still experiencing the daily brain fog and spaced out feeling all the time. Felt as though my eyes would just wonder off in a daze.
It wasn’t too long after that I again was having problems with sleep and not able to get another prescription for Ativan I turned to alcohol as a way to relax me enough to sleep. Eventually I needed to drink more and more to do the trick… eventually I was consuming 6-10 drinks in an hour or two before bed. It didn’t take me too long to figure out that I had a problem.
I didn’t have a problem sleeping anymore, but I now had a problem with anxiety during the day… sometimes going for a drink on my lunch break to kind of take the edge off. I was finally able to get a doctor to look after me. He put me on Ativan for the anxiety which I took during the day and I would still drink during the night before bed. This is how I spent the next 4 or 5 years of my life, Ativan during the Day, Alcohol during the night. I quit drinking a few times because I felt so horrible all the time and when I did I would take sleeping pills at night.
All during this time I had problems with feeling spaced out all the time, fatigued, off balance feeling, stomache problems, and fast heart rate. Who wouldn’t have these problems after doing all that stuff to their body. Ohh, I almost forgot… I smoked for about 10 years as well. I was put on a beta blocker to help reduce my heart rate. I remember needing to take my beta blocker before having a cigarette otherwise my heart rate would get so high I would almost pass out. I knew I was on the path to destroying my life.
I quit smoking about 4 years ago and I can now count on two hands the number of drinks I have had in about 2 years. A couple of years ago I started having daily panic attacks, was feeling uptight and nervous all the time, was getting very short of breath… couldn’t even do simple chores anymore without feeling like I was going to pass out or die.
In February of 2010 things started to get worse for me. I got really dizzy for about 2 months straight… felt really funny… the floor even felt like it was moving when I walked. I went to the hospital a couple of times and they said it was Eustachian Tube Dysfunction and Allergies. I ended up going to a Chiropractor who adjusted my neck. I know that didn’t help immediately but the constant dizziness finally went away, however I all of a sudden started developing a huge number of floaters. I have never had a floater before ever but over the last year they have multiplied a lot. They are all of the transparent kind which I can see in great detail. I see the individual cells that make up the body of the floater, I can’t even count how many I see because it’s like a cob-web of them. I do notice a ton more when I squint my eyes looking out at the sky as well as wavy lines. In March I got another Sinus cold and developed tinnitus which was in one ear. This has gotten worse and I can’t say that it’s in any ear… it sounds just like a buzzing noise somewhere in my head.
In April I was fed up with how I was feeling so I did some research on Benzodiazapines which is what Ativan is and realized that it can cause all types of problems so I tapered myself off that ending it completely in July. I was hoping that it was the Ativan which was causing all my problems but I have been off of it for 7 months now and I can’t say that I notice any improvement. Actually things have gotten worse since being off of it. I know there is a pretty cruel withdrawal that can last a long time… but not convinced that that’s what is going on. I can say that I don’t have panic attacks anymore and I no longer need to take a beta blocker for my heart rate.
Here’s a list of symptoms that I am experiencing on a daily basis now
• Dizzy, wozziness, off balance feeling
• Feeling spaced out all the time, like my eyes are in a daze
• Concentration is terrible, brain fog all the time
• Feeling of pressure in my head
• Eyes feel unfocused
• Eye floaters
• Eye pain (they feel strained and tension like headache across my forehead and into temple area)
• Light sensitivity
• After images (especially when reading off a computer screen… if I look away I will see the text faintly on the wall for example)
• Tinnitus
• Dull ear ache feeling off and on
• Ears sometimes feel like they need to pop
• No energy at all, feeling fatigued all the time, yawning all day long
• Very gassy, mainly burping, and heart palpatations… even if I just drink water
Not sure if these are related or not
• Chronic nasal stuffiness, always clearing my throat
• Chronic stomache problems, inflamed, feeling nauseated all the time, tender when I push on it
Other symptoms which aren’t always present
• Headaches at base of skull which I believed to be Occipital Neuralgia
(was daily but now only get them maybe once a week)
• Muscles feel weak and heavy, legs feel jelley like
• When walking I sometimes feel resistance as if someone is pushing
downward on my head
• I developed a twitch in my right eyelid which lasted 24/7 for 2 months
• Have had 5 or 6 sinus colds in the last year
• When I use an elevator now and get off I still feel like I am moving for a couple of minutes
• Pins and needles type feeling in my feet when I cross my legs
I would like to point out that the vision issues, dizziness, spaced out feelings get 10x worse when I am in a public place with bright lighting, turning my head a lot or any kind of exercise… even simple chores.
Tests that I have had done
Echocardiogram – which showed a leaky valve (doctor didn’t indicate any concern)
EKG – showed tachycardia
Endoscopy – no problems (done in 2007)
CT of Cervical spine – indicated a cyst or abnormal blood vessel (requested an MRI)
MRI of Cervical spine – confirmed abnormal (large) blood vessel and degeneration (doctor didn’t indicate any concern)
MRI of head – normal
EEG – results not back yet
Blood – has shown in the past borderline low thyroid levels
Lyme Disease – tested negative
Candida – I believe this is controversial
Autoimmune Disease of some sort
I have seen an ENT who did a septoplasty to correct a deviated septum… absolutely no improvement. He then said my ENT issues were allergy related.
I had allergy testing done and they showed I was allergic to dust and maple trees. Antihistamines and allergy shots had no impact at all.
I have also seen an Optometrist 3x who confirmed that there are no problems with my eyes I am scheduled to see a Neurologist who I am praying will finally be able to put an end to this.
Things I have considered to be wrong
• MAV – Migraine Associated Vertigo
• TMJ Disorder
• Inner Ear problems
• Neck problems
• Lyme Disease – even though the blood test was negative
• Anxiety disorder?
• H-Plyori – currently awaiting a test for this in March
I know most people will say to stop worrying about things so much but the truth is I’m not really worried… I feel more relaxed now than I have the last 8 years of my life… however I can tell there is physically something wrong with my body and can feel myself slowly fading away. I know there is something wrong that hasn’t been identified yet. If I have to live with this stuff the rest of my life then I can deal with it, I just want to know what’s going on. If anyone has any comments please let me know. I feel like I am slowly dying.
i doubt you will want to hear this, but many of the symptoms you describe are things we all (or at least most of us) experience from time to time. for example, headaches, twitching eyelids, pins & needles, sensation of movement after using an elevator, recurrent colds/sinus infections - these are all things which fall within the spectrum of "normal" if they happen from time to time.
many of your symptoms are also consistent with anxiety - im not saying that is the cause of your symptoms, but its certainly true that many people with anxiety will experience some or all of the symptoms you describe. the tachycardia, and the worsening of symptoms in public are certainly suggestive.
aside from the anxiety, it seems some of your symptoms may be related to inner ear issues, but you have seen an ENT specialist who hasnt come up with anything very specific. in fact, it appears over the last few years you have had a very thorough work up across a number of specialities, and nothing very significant has been turned up.
i would suggest that if nothing serious has been identified, and your symptoms have been doing on for 8 years, its highly unlikely that you have anything lifethreatening, or you would be in a much worse state than you are now.
have you considered speaking with a psychologist, or a therapist of any sort? i dont mean to sound presumptuous, but you might be surprised at how much talking about your concerns, and exploring if there is any underlying reason for your anxiety, might help.
edit - upon re-reading your post there is a slight disconnect in what you are saying - you say you feel like you are dying, then you say you aren't really worried - this sounds very peculiar. could it possibly indicate that deep down you know there is no serious organic pathology occuring, and know this is more psychological? total speculation on my part...just trying to explain the somewhat weird disconnect in your words.
Last edited by kronenborg; 02-02-2011 at 12:45 PM..
i doubt you will want to hear this, but many of the symptoms you describe are things we all (or at least most of us) experience from time to time. for example, headaches, twitching eyelids, pins & needles, sensation of movement after using an elevator, recurrent colds/sinus infections - these are all things which fall within the spectrum of "normal" if they happen from time to time.
I know but I experience the majority of these things daily
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many of your symptoms are also consistent with anxiety - im not saying that is the cause of your symptoms, but its certainly true that many people with anxiety will experience some or all of the symptoms you describe. the tachycardia, and the worsening of symptoms in public are certainly suggestive.
I agree that there is a possibility of some sort of anxiety problem. I have been anxious in the past, otherwise I wouldn't have had problems with sleep and turned to the things I turned to. I think a lot of my anxiety now is coming from always feeling this way.
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aside from the anxiety, it seems some of your symptoms may be related to inner ear issues, but you have seen an ENT specialist who hasnt come up with anything very specific. in fact, it appears over the last few years you have had a very thorough work up across a number of specialities, and nothing very significant has been turned up.
The ENT and my family doctor believe my Eustachian Tube isn't functioning correctly. Not sure if that will cause these problems or not... they can't tell.
i would suggest that if nothing serious has been identified, and your symptoms have been doing on for 8 years, its highly unlikely that you have anything lifethreatening, or you would be in a much worse state than you are now.
Quote:
have you considered speaking with a psychologist, or a therapist of any sort? i dont mean to sound presumptuous, but you might be surprised at how much talking about your concerns, and exploring if there is any underlying reason for your anxiety, might help.
I have spoken to a therapist before regarding anxiety and she thought I was being too hard on myself and the anxiety I was experiencing wasn't excessive but rather normal.
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edit - upon re-reading your post there is a slight disconnect in what you are saying - you say you feel like you are dying, then you say you aren't really worried - this sounds very peculiar. could it possibly indicate that deep down you know there is no serious organic pathology occuring, and know this is more psychological? total speculation on my part...just trying to explain the somewhat weird disconnect in your words.
I feel like I am slowly dying yes... I have seen myself going downhill over the last several years despite attempts to better my life (giving up the booze, sleeping pills, benzos... and living a healthier lifestyle has seem to of made any difference.) I have become so familiar with how crummy I feel that I am at the point where I don't panic over it anymore... just trying to find answers. But deep down I believe there is something real going on.
You may have obstructive sleep apnea on top of the other things. Has anyone slept with you in the night and noticed if you snore a lot? Do you dream you are falling or jerked in some way? Do you stop breathing for a second or two during the night? All are classic symptoms of OSA. OSA requires testing by a sleep specialist and then wearing a mask during sleep. People with untreated OSA feel very tired in the morning. like they are in a fog, and they may doze off while driving. Wearing the CPAP mask is an instant "fix" for those symptoms.
Consider that you may have more than 1 problem.
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