This is a place for new members to introduce themselves and post their stories as to how it all began for you, the symptoms you experience, any tests that you have had, any findings or theories you have or anything else you want to share.
Hello, I have been feeling unwell for almost 8 years now and things are getting to the point where it has really affected my quality of life. I'm a 29 year old male (even though my profile says female... I don't know how that happened.)
In the beginning when this whole thing started I just remember one day feeling spaced out and disoriented. It was after a camping trip and I figured it was a lack of sleep from too many late nights. I couldn't seem to catch up on my sleep, and started going through a lot of anxiety and insomnia because of how I was feeling. After a couple weeks I went to the clinic and 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)
• 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
• Chronic nasal stuffiness, nose always feels plugged, always clearing my throat
• Chronic stomach problems
• Muscle twitching, aches and weakness
• Headaches at base of skull
I would like to point out that the vision issues, dizziness, spaced out feelings get 10x worse when I am in a busy visual environment, under 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 saw a neurologist who said my symptoms were dillusional.
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? (although I think my anxiety is caused by not knowing what is going on)
Most people don't understand what I'm going through, they say 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.
I have had all of the same tests that you had. My first EEG came back abnormal. The neurologist said it looked like I had a stroke or seizure and that my brain waves were moving very slowly. The second was an advanced EEG where I had to stay home for two days with electrodes attached to my head and video cameras in my house to see if I was having seizures. I didn't and the doctor said that sometimes she gets the same results if people are really tired. I am. I also have neck issues that I had before this started, but I am now trying to explore the idea that a pinched nerve could be causing this. The strange thing to me is that this started in one day. I woke up with it after taking a new medication for two weeks (dapsone) which is given for the hives associated with Celiac Disease. I am also going to explore TMJ which I have had for years, but could have been triggered somehow. I posted a couple of days ago and explained how I got a positive result for Lyme and a co-infection called Babesia. I am supposed to go very soon to have a port put in my chest so that I get the antibiotics more effectively. I hope it works. I get very hopeful each time I visit a doctor, but am let down after because there are no answers. I have seen every type of specialist you can imagine with the exception of a rheumatologist which I will see next week. If I find anything out, I will let you know.
How long have you been feeling this way for, and is it a constant spaced out feeling that does ever really go away? I know exactly how you feel about getting hopeful and encouraged when you go and see a doctor and get testing done only to be let down afterwards. I am currently in treatment for Lyme Disease myself, even though I tested negative on the ELISA and western blot through Igenex. Can you tell me about all the symptoms you are experiencing?
Thanks for joining the group... I just created it yesterday and it will take some time to get some members in here but I've been dealing with this for 8 years and I think it will be great to have a group for us all to visit.
I feel very dizzy and foggy almost everyday! And I have someday I'm so tired that I feel I'm walking backward! A recent MRI found me a Chiari Malformation. I have been waiting for almost three month to meet a neurosugeon and still waiting.
I've heard that these are very common symptoms of chiari. I've had an MRI done which was normal but I even posted my MRI in a Chiari forum and people said it looked normal to them. If you do have Chiari at least you have a diagnosis... that's good news in my opinion. Hopefully you will get the help you need and start feeling better.
Hello! I found my way to this group when I googled "pressure pain in head", which led me to another forum where I found this link. To jr991, I am glad to know I am not the only "young" person with a novel like book of health concerns. No doctor was ever able to figure out my problem until I, by chance, was recommended to a M.D. who specializes in Functional Medicine last fall. I am only 22 but sometimes I feel like I am 80 years old. My issues started when I was only 9 years old with chronic headaches. The headaches would come on and last for hours. My parents didn't believe that a 9 year old could even have a headache but as time progressed so did the intensity/severity of my headaches. In bullet form I will share with you some of the symptoms I have experiences over the last 13 years that have left me feeling in a fog.
-Chronic headaches (told that they were migraines/tension headaches). I had several tests done including an MRI which only revealed a non-problematic (for the time being) colloid cyst
-Anxiety which can be severe at times. When I was 18 a doctor prescribed me several different anti-anxiety medications
-Depression, which was also severe at times. I don't even want to get in to the amount of medication I was prescribed over the years
At this point let me just say that any of the medications I was prescribed, and there was a lot of them, did nothing to "cure" my problems. Doctors thought it was all in my head which was really frustrating because the pain was very real. Now for the other symptoms:
-Irritated stomach/intestines but "negative" for Celiac's
-Two peptic ulcers not caused by h. pylori
-A small hiatal hernia
-Nausea that got so bad from 2008-2009 that I lost 20lb and became malnourished
-Sinus problems that date back to childhood
-Constant sinus infections, some lasting several months with no relief from antibiotics
-Allergies, nasal pressure and congestion
-Foggy feeling in my head maybe from the sinus pressure
-Possible TMJ but I wear a night guard to prevent my from clenching my teeth in my sleep
-Burning pain in my lower back when standing for more than 15 minutes
-General muscle aches and weakness
-Constant fatigue that no amount of sleep could cure
-Lack of concentration
-Burning feeling in my eyes. Irritated by certain types of lights (i.e. being in the mall or store for too long)
I tried to include all the of the symptoms that stand out most in my mind but there are so many that I can never get them all in one shot. I have had so many tests including CTs, MRIs, CBC, Barium tracing, endoscopy, colonoscopy, etc. I even had a septoplasty thinking that it would help me out with all of my sinus problems but it really did not do a thing.
Not a single doctor could ever explain why I was feeling the way I was when I was only a child. One even told me that I was my own worst enemy. I found this doctor in NY, about a 1/2 hour outside of NYC where I live who used to practice medicine as a hematologist/oncologist but left the field to open her own Functional medicine practice. I had done a check list of my symptoms beforehand that her office had sent me and when we finally sat down to meet ( 1 1/2 hour doctor consultation the first time with her) she told me that the way I felt was more common than I thought. Tons of people have symptoms like I do and they are often written off as psychological. The first thing she told me was she thought I was Mold Toxin Illness. I had no clue what it was at first but I knew mold, in certain circumstances, could kill people. She told me that a Dr. down in Maryland by the name of Dr Shoemaker has compiled massive amounts of research into biotoxin illnesses in humans. Biotoxin illnesses include lyme disease, bartonella, babesiosis, mold illness, pfiesteria and some others that I am forgetting at the moment. These are real doctors by the way and I have looked into several peer review studies to know that this is all real.
Anyhow, to make a long story short, she sent me for blood work that certainly wasn't the normal CBC. I had 14 vials of blood drawn. Apparently there are certain HLA DRB types that exist in the general population that account for some faulty genes. Simple put, approximately 25% of the population has chronic illnesses that are seemingly unrelated but are actually caused by biotoxin illness or chemical sensitivity (also addressed by Shoemaker's research). My HLA DRB types came back as being positive for one of the dreaded types (likely from my mother who suffers much more than I). There are several (7 I think) but mine is 14-5-52B. You can google it "14-5-52B HLA Shoemaker" and you will find some interesting material. What happens in this group of vulnerable people is that instead of your body breaking down toxins and excreting them as they should, they bind to fat cells and circulate around in your body until you remove them somehow. This leads to a cytokine spike. I will post the chart in a link at the end and this will all make much sense. Noteworthy blood work results:
C4a: 15,380 with a normal scale being from 0-2830. This is basically systemic inflammation caused by the chronic activation of my immune system.
MMP-9: 621, anything higher than 300 is suspicious. MMP-9 delivers inflammatory elements from blood to brain, nerve, muscle, lungs, and joints.
VIP- <10 on a normal scale of 23-63
I also had very low levels of vitamin d and zinc.
The C4a was quite a shock and my doctor told me it was the second highest level she had ever seen. Yikes. It was so nice to finally have an answer that I actually cried. I was nice to know someone didn't think I was crazy. Later that spring I found out I had an old bartonella infection by having a DNA analysis of my stool done, pleasant I know. Biotoxin illnesses can coexist which is even more of a pain but it is good to know. Shoemaker found a very specific set of guidelines for treating people with these biotoxin illnesses. My mother went to her just last week. She had been tested for lyme many times over the years and never had a positive result. The doctor did different blood work and found that she did in fact have tick born illness, along with the biotoxin susceptibilities.
jr991, you may have what I have and it is very frustrating to be bumped around to different doctors. In the beginning of my post (sorry for its length) I said I started getting headaches when I was 9 years old. My old house had a constantly damp, mildly basement which is where my exposure to mold first occurred and thus my symptoms first began. I also live in a woody area of NY and ticks are rampant around these parts. Perhaps when you went camping you picked up something from the woods or the water. It is worth a try to look into what I have told you even though many mainstream doctors are still in the dark about this stuff, that doesn't mean you can't do something about it. Also, please consider that many doctors dislike researchers like Shoemaker, not because there is not truth to his research, but because finding a cure to common chronic illnesses leaves other physicians with less patients to treat. I am finally starting to feel better but even if I spend time in a friends house with mold I start to feel off and have to get right back on the medication and flushes. Here are some links to Shoemaker's stuff. I hope you find relief in the near future! Best to you all.
(This will help you understand what I was talking about, hopefully. Explore his site and go to some of the other links provided.)
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