Unexplained Dizziness, Contstant Heavy Head, Extreme Fatigue, Nausea - Part 2

I haven't gotten any shots or vaccinations for years- 8 or more. Hope this helps...

Hey all,

I thought id jump in after reading every page of this thread. About 6 months ago these symptoms all began for me with 2 severe bouts of vertigo that sent me to the ER. They guessed inner ear infection but 2 MRI's, blood tests, and a corotid ultrasound later they sent me packing with anti-nausea drugs. I thought for sure that this would have sorted itself out by now however the symptoms have only gotten stronger and more debilitating. Some things I want to point out and confirm with everyone.

1. These symptoms come in waves. I never feel 100% but i feel like I go from 20% to 70% and back again.... sometimes I can get as much as a week at 70% but not much more than that. Meanwhile the time that I feel horrible seems to be getting longer and longer... weeks...

2. There are these wierd sensations that are hard to describe... like an adrenaline rush with massive fatigue and cramping. They usually start in my back or neck and work up into my head (lower back or behind my eyes). Once there you can forget about any sort of normal functioning. This symptom seems to be what brings the wierd taste in my mouth and back of my throat that others have described... sort of a metal taste...

3. Fatigue and tingling in my arms (especially left), neck, and in my face... moving seems to help. My co-workers have come to say that I pace around the office like a "headcase" sometimes.

4. The worst symptom is the mild dizziness and constant nausea. Sadly I think my brain has slightly adjusted to the new feelings... which means that with the next wave my symptoms might actually be getting more intense. Before this hit I was 185 6'2 in the gym constantly... now im barely 160 and couldn't dream of lifting a weight above my head with this dizziness.

5. I have described one symptom as "blurred vision" but that not true... eye doc says im still 20/20. What I am experiencing is a much harder time concentrating. The vision goes out with that concentration... it's like my default perception went from clear to "blurred" in lala land. I have to force myself to focus on any one thing now. That being said I have noticed this also has crossed over into my conversations as well... I hear words but can't make sense of them at times. I feel bad asking for people to repeat themselves which is a must when there is any background noise.

To try and see if anyone has any common denominators I will throw a couple of things out there. First, I had just started taking accutane when this began and immediately stopped for fear of vitamin A poisoning. Second, a year prior my Gastro had diagnosed me with inflamation of my esophogus, stomach, and colon and could not find a cause. At the time i was only experiencing stomach pains but now im wondering if something has progressed.

My current guesses as to what it might be are... Some form of addisons (adrenal), or some sort of infection (maybe one that was causing my stomach pains crossed over into my blood stream or something). At the moment I have hit a dead end with my primary, opthemologist,  and neurologist. I have set appointments in the next month for my Gastro and a Holistic Doc (desperation). Currently testing for parasites...

Hopefully someone can find some similarities in my post so we can tell our docs what to look for.... Ill keep you posted if I find anything. By the way im a 30 year old pre-med student so im approaching this as seriously as I can. I don't care what someone says, its not in my head... im not depressed but this is so debilitating and im getting to the end of my rope.

Ben

Ben, You sound like me. This all started shortly after a bad cold almost 2 years ago. It started to be only once in a while and progressed to all the time.

1. Mine also come in waves. Yesterday I had a few hours of lucidity, today I am horrible. Dizzy, headache, that adrenaline feeling you describe (like a wave of anxiety from deep inside). I used to have weeks of feeling better, then it dropped to days, now it's down to hours. It's almost constant now.

2. I don't have the taste.

3. I do have the fatigue, and tingling in the left side of my face from my cheek to my jaw, frequent numbness in my left calf and hip/thigh that comes and goes. I wake up feeling like I have not slept at all, even though I have no trouble falling asleep and am in bed or at least 7 hours a night. I do wake up at least once per night to go to the bathroom.

4. I am dizzy 24/7. Sometimes more dizzy than other times, but it's always there. When I get out of bed, when I turn my head, if I look up and then straight, or just sitting. Sometimes it feels like my eyes are 'spinning', or the muscles in my eyes are being pulled it two different different directions. This symptom has gotten worse over the past month. I used to work out 3-4 days a week, 45 minutes on the treadmill and then weights. I cannot set foot on a treadmill any longer. I fear I would fall over when I stop.

5. I have 'blurred' vision also sometimes, like my contacts are dry or dirty, but they are not. I have a hard time concentrating on my job (I work in software support).

I have had 2 brain MRI's, 1 brain MRV, a CT scan of my sinuses, 1 MRI of my neck (cervical), been scoped by an ENT, had extensive vestibular testing - all 'normal', all at Mayo Clinic. Had allergy testing and stopped the foods I was allergic to. Two months ago I had extensive blood labs, and Adrenal Stress Index and GI test. All hormones are in the toilet, cortisol is high, DHEA is low, melatonin is low at night.

All other blood and lab work looks 'normal' except for my cholesterol, which is through the roof. Everyone says "this is hormonal'. I went to a chiropractor who is more of a naturopath for special treatment of my neck and head. No help. I am in acupuncture 1x per week. No help. OBGYN switched me from birth control pills to a patch. Seems to make everything worse.

I did a huge food and chemical intolerance panel last week. I should have the results in a few days. I decided to start allergy immunization therapy.

I have a vertical shift in my vision because of a buckle around my eye from a detached retina. That was 5 years ago, so I don't think that is the cause of any of this. At the advice of my naturopath I have cut out all sugar, flour and refined foods. I eat only natural, high protein foods. Meat, seafood, eggs, vegetables and very little fruit because of the fructose. It's been 6 weeks and I thought I would start to feel better, but no. I did lose 3 lbs though :-)

I go to the MAYO Clinic for almost everything, They have diagnosed me with Migraine with Dizziness. They wanted me to take an antidepressant. I said no more than once. We tried Verapamil and it made me physically sick.

Next up is an endocrinologist and an internist Board Certified in Complementary Medicine. Last Wednesday my Headache Neurologist at Mayo gave me Botox for migraine. It takes 2-4 weeks to know if it is going to work.

There's more, but it would be like writing a novel.

Since our symptoms are so similar, I would love to talk more, maybe off the board. I am near Phoenix. I am 48, 'perimenopausal' and at the end of my rope.

Karen from Arizona

Wow, Ben. You sound much worse than I ever was! I'm so sorry and I hope you find the cause of all your symptoms. Keep looking everywhere, medical, holistic, nutrition...look EVERYWHERE. You are going to stumble on someone or something that will help you; cure you. I never had any stomach issues except the vomiting that comes when a severe vertigo bout hits. I take motion sickness pills for that; they make me sleepy, but really calm my stomach. I never had any numbness or tingling at all. Have you seen a chiropractor? It could be a pinched nerve. You cannot believe how 'bent out of shape' we get when we're sick; or when we are compensating for the part (or parts) of our bodies that we know aren't working right. And being sick or in pain causes soooo much stress-and stress can really mess you up. Boy, the feeling of yo-yo-ing between 20-70%--I can relate to that!! I walked around for a year and a half like that. For the past several months I have tried everything I thought was reasonable and relatively safe to help my body heal itself. I felt like my body was betraying me! Here's what I know for a fact: My problems started about 1 1/2 years ago, when out of the blue I got out of bed and got vertigo so bad, I went crashing to the floor and started vomiting uncontrolably. NEVER had vertigo before in my life. My husband immediately took me to Urgent Care: everyone thought I'd had a stroke. Thats when I went thru all the blood tests, neurological tests, MRI of head and neck and Cat Scan of my brain. I saw my regular doctor on day 3 and both doctors chalked it up to a viral infection of the inner ear. I took an entire week off from work that time. I really don't remember if I took antibiotics or not, but I can tell you I NEVER felt 'good' after that, and had dozens and dozens of mild to moderate vertigo bouts in that year and a 1/2. And then a couple of months ago, it happened all over again- actually worse than the first time because this time I had a CRUSHING headache that lasted 3 days. That's when I found this website. You can read my posts to see everything I tried. As of today, I feel 'good'. And I've felt 'good' for a little over a week now. I'm even beginning to trust that feeling. I even try to make myself get vertigo (touch my toes and stand up FAST, spin in circles and make fast left and right turns) and NOTHING gives me vertigo!!! A month ago I never could have done those things! I would have been scared to try. I'm still getting acupuncture for vertigo, my sinuses and stress once a week and taking Chinese antibiotic herbs to help drain my sinuses That's all I'm doing. And I can tell you my sinuses are giving up stuff like I've never had happen in my life! And I feel good. I FEEL GOOD. And I think it's a miracle. TRY EVERYTHING, Ben. You'll find YOUR miracle.

betterhalf... soooo awesome!! I am really happy for you. I am totally gonna try acupunture next.

clancybenjamin... I am only suggesting because I just had a metal toxicity test done... and found out I do have elevated amounts of lead and mercury. I JUST started treatment to try to rid myself of these metals (hopefully it has an effect on the rest of my symptoms) so I cannot tell you if getting rid of these metals helps... or if my treatments work at getting rid of metals.

You might be as surprised hearing how much metals can cause our symptoms. I'd feel good about the metal test... but i'm freaked out right now, because my new neurologist wants to order more mri's to count out ms and another scary disorder... i thought i was in the clear about ms... i guess not. Whatever happens... the metals need to come out. I am happy to have done the test. I'll keep this forum up to date.

Hey all,

Thanks for the responses. It's great to hear what things to keep in mind and which to stay away from. I also appreciate the suggestions. This week I saw a Chiropractor since I did think it could be a possible pinched nerve in my neck. It seemed to alleviate the headaches and tension but did nothing for the numbness, fatigue, and nauseau.

As for accupuncture I did get a referral today and will contact them after the holiday. If it has helped you at all i am more than willing to give it a shot. Currently waiting to hear back on parasite testing results. The Naturapathic (holistic) doctor appointment is set as well. What kills me most is that it takes over a month to get into a doctor and this process is just crawling. Each time there are failed test results it is ages until a can get back in... and by then they have completely forgotten about my symptoms. The last time i was there my doc pulled up his notes and it said "I think you might be depressed"... Just give me a doctor who cares and can see me more than once every 6 weeks...

Online I came across a thread where a nurse replied and mentioned tests to demand with our symptoms

-Fasting Glucose Blood Test (Do not eat or drink anything but water after modnight day before and give sample in AM)

- A1C Blood Test

- Urine Test (Checks  pH, PROTEIN, Glucose, Blood, Particulates, bacteria)

- CBC with differential- COMPREHENSIVE METABOLIC PANEL (Checks your liver and kidney function)

- Electrolyte Panel (checks sodium, calcium, Mg, etc)

- TSH

- T3

- T4

This doesn't seem like an inner ear issue to me. With the other symptoms it just doesn't check out. It feel like my system is either carrying some sort of toxins (liver or kidney failure), or isn't converting food into energy like it should. Something along those lines is also possible... ie anemia and lack of oxygen to the cells would result in the metabolic failure previously mentioned.

6 months ago I would have never dreamed people could be walking around like this. Debilitating is a very accurate word. The other day at work a had 2 people tell me I looked like I was dying.... and that was on a decent symptom day. I feel for you all and hope we can find something. Symptoms allowing, as a worst case scenario Ill do it myself (yep med school apps are out).

Something im going to do this weekend that I would suggest to you all is grab a journal and write daily. We might be able to more easily identify a pattern. I'm also going to log my BP and blood sugar levels. Something like this would really help the doctors if they become invested.

Oh, one last thing... my hair is falling out like crazy... which again leads me to believe its one of the above causes. Is anyone else experiencing alopecia with this?

My hair is not 'falling out', but I do notice a lot on the sink in the morning. I hear what you say about waiting for doctors. It took my 6 months to see my first Mayo Neurologist. All the winter visitors come down here starting in October and then it's almost impossible to get an appointment in any decent amount of time.

I am considering going to a TMJ specialist, just for fun. It is one thing I have not been checked for.

In the meantime, my headache neurologist has put me on a short course of steroids to try to kill the 4 day migraine I had. I am on Day 3 and there is a little relief, but no relief from the dizziness.

I need to get back to exercise, so decided to try a few old fashioned sit ups today. Dizziness kicked in when I got up.

Also my ALCAT intolerance testing came back, but they want to draw blood again and retest as the results came back that 70% of the things they tested me for came back positive and they have never seen that before. I knew I had allergies, but that's a bit ridiculous :-)

Mine almost feels like there is something in my neck also. If I look up and then look straight on, if I turn my head to the right or left, if you press on the back of my neck, dizzy. If I get up out of bed, dizzy, especially in the middle of the night - I actually bang into a wall or two sometimes. If I walk on the treadmill for 10 minutes, when I get off, dizzy. I am going to work with my acupuncturist who is also a chiropractor to take another look at my neck. I tried the journal and no pattern existed. I think I will start it up again.

How do you keep track of your blood sugar levels at home?  I have a BP machine, but have no idea how I would track blood  sugar.

Karen from Arizona

hey everyone,

it looks like we got a good group, that takes the time to jot down your experiences and findings. awesome stuff.

I know we're all suffering from very similar symptoms.  I know we are all on the quest for herb.   I wanted to see if any of us share similar or (un-similar) lifestyles or habits. just want to see if some of us might have any common links... just write whatever you feel.

CURRENT SYMPYTOMS:

-dizzyness unsteadiness while standing-approx 1.5yrs.  tilting head upwards makes it considerably worse.  side to side is not as bad.

-experiencing a strange overwhelming amonia-like odour off and on. Always happens around soaps.  I also smell leathers.

-slurred speech (excess saliva)

-sore muscles

-weakness in my limbs.... really weak legs especially

-troubles balancing my feet on uneven ground or stairs... or standing on one leg (my calves and legs tremor back forth and side to side... very unsteady)

-very fatigued -tinnitus in my right ear (had it for a decade)

-slight anxiety from my existing issues

-shortness of breath

-feel better when i take DEEEEEP breathes.

-I have a very heavy soreness across my shoulders and through my neck and the base of my skull.

 

-starting to feel less coordinated lately

- a touch of involuntary muscle spasms... (ms? freaking out)

 

LIFESTYLE:

I am a 43yr old male. I used to be VERY athletic in my youth, but now I am 60+ lbs overweight. I have had IBS for over a decade... but have recently been cured from my stomach issues when i found out i have food allergies. I sit in front of a computer for a living. I was a smoker for 26 yrs. all my symptoms started when i quit smoking. I stress pretty easily. I had a super stressful year last year at work. I work 10hrs p/day 5 days a week. I have a really bad back. I injured my lower back pretty badly 10 years ago when i was in construction.  threw my back out recently.  I have elevated traces of lead and mercury. Recently started treatment for metals... i am day 5 of 30. felt better than usual for a day(2nd day) but now feel horrible again. I suffered a head injury last year in an accident. I have hay fever. I've taken an allergy sinus medicine for over a decade.  A nasal spray....to help with my hay fever. I watch a lot of tv. I worked in construction for 15yrs before i started in the computer industry. My home life is great... great support system.  I've had a few cold sores.  I went through a mid life crisis last year.  

I am happy now... yessss... even with this balance thing. better than death. we still have a chance at beating this... some of us, anyways:).  So we got wobbly legs... and a messed up balance organ. Things could be so much worse... try to stay as positive and happy as you can... i will TRY to as well.  Can anyone pinpoint any triggers as to when you feel worse??

there's my story. do any of you see any similarities to me?  jot them down or contact me directly... if you don't want the whole world to know your beezwax. i'm a personal guy too. i loathe, putting my personal info online... but if it means a possible cure... i'll take it.

later everyone. i hope your feeling better tonight.

oK, It's late , my vertigo has me up. I have to say , i've read so many  forums and this and there's a common thread we all have. Nine out of ten of you describe symptoms "to a tee" that I have for 7 months .  Feel like you're in a boat... I keep saying I feel like i'm in a canoe on a gently rolling body of water... some say they feel "going up in an elevator"  I get the same thing . Feelings of falling forward ... I feel like one of my senses of balance is "unplugged and now im balancing myself by sight alone . I beleive this because when it's dark, what little balance I have left leaves me and I get disoriented and anxious, prior to this , I could walk in the dark and not be off balance. One person said they played baseball for years and had to give it up because he could no longer "follow the ball while running to catch it" ...another a pro soccer player who could no longer play well . I race offroad motocross , I was doing really well, having a great time, getting some 1st places ,  2nd's and 3rd here and there... then the balance problem started. I'd be coming into turns that i've done easily before and all of a sudden my body is taking me outside right when going into a left hand sweeper turn.... very hard to fight it . If I come to an abrupt uphill (hillclimb) the sudden compresion of the suspension and associated g-forces makes my whole head want to look down and roll over instead of ahead. I find it very hard to look ahead, and in turns thats where you win races, by looking thru the turn and at it's exit .... I cant look thru the turn , I get vertigo and either slow down, go inside or outside the turn. I feel like it's my first time on a bike ...Lol    .   Another woman said she feels like she's on a merry go round and the G-forces you feel pulling on your brain and eyes , I feel the exactly same thing ... I went to EEnt's , Md's , md's, blood tests, Lyme test, had 2 mri's , inner ear mri , video nystagmus , epleys , a little pseudophed , loads of pseudophed, phenylephrine, dimenhydrinate( old dramamine) tried every ear antibiotic , tried antifungals (diflucan every other day 2 weeks . Everything is normal and perfect hearing, 20/20 vision... although when the vertigo is "going on" my depth perception is gone and my ability to focus on near or far is diminished. The few times I've woke up and noticed it's lifted, I notice my vision and depth perception is 100% amazing...while it lasts .  Just like the rest of you, nothing helps and no one has answers. As for stress , I went thru the military (Army) 87-94 and never had vertigo, bouncing around in trucks, tanks, planes, dehydrated, hungry fatigued to the max, felt like c**p but never off balance. And in 2003-4 I went thru the most stressful time in my life for a year, 3 devastating and life changing "sink or swim" events in a year . Got situational Anxiety to the max and somewhat depressed. But I never got uncordinated or off balance, not once .  On the other hand , it's frightening when you feel a movement thats not there , that sudden fear can be mildly or moderately traumatic and it causes an instant anxiety ... and continual fear and anxiety over time can cause PTSD , general anxiety or depression in people who have no emotional or life situational problem to be anxious or depressed over. But this is when they try to start throwing SSri's , Benzo;s, antipsych's ... that will mask the 2ndary symptom, not the root cause.  Eh, what do I know , this is just my feeling on it and I could definitely be wrong. Always be willing to accept yo could be wrong... haha

I Think there is enough of us with these "close to identical" symptoms that if we network together, maybe someone can help us.

I am just thinking out loud right now , maybe a private facebook, invite only ??? or maybe i could give an email . If there are enough of us in a group, we could contact some of the major clinics who knows what could happen . I'm a highly athletic 40 yr old and the harder I train, the worse this monster vertigo gets . It's frustrating , It's taking my life away , and many of yours from what I read.

 

It helps to know others are having the same symptoms but we need a solution. I might also add, I've had this since may (now it's nov)  that's 7 months ... over these 7 months i've had maybe 3 or 4 times where it suddenly and completely lifted for about a week, during which time I cold ride at the extremes of my skill level, jog down one railroad track and had perfect vision /depth perception and nothing re-triggered the vertigo ... then 4-5 days later it comes back as usual . I had no injury , I never had "spinning" type vertigo , just "sitting in a canoe" syndrome or false sensation of moving.  I think we should network.   I can assure you , I have no alterior motive, no ads, no doctor or clinic to suggest at this moment . No herbs , no Homeo, no accupunct, nothing. I do have a medical background in an unrelated field that thus far also has no solutions to this. my only motivation here is to get a solution to this set of symptoms we have that excapes diagnosis .  As a group, we ma be able to spark someones interest. If 50 people complain with almost the same exact symptoms, you can deduce that there are 100 people silent for every 1 person posting on the web . Big medicine knows this.   I may try to forward this to everyone I see with these exact symptoms and see if anyone's interested. Please do not give ANY personal info to ANYONE . You have mentioned symptoms, duration and a screen name. Thats plenty .   I'll try to get another email only for this , if there is any interest. I am in Pennsylvania . Again, I have no financial interest in this, nor do anyone I associate with directly or indirectly .

oK, It's late , my vertigo has me up. I have to say , i've read so many forums and this and there's a common thread we all have. Nine out of ten of you describe symptoms "to a tee" that I have for 7 months . Feel like you're in a boat... I keep saying I feel like i'm in a canoe on a gently rolling body of water... some say they feel "going up in an elevator" I get the same thing . Feelings of falling forward ... I feel like one of my senses of balance is "unplugged and now im balancing myself by sight alone . I beleive this because when it's dark, what little balance I have left leaves me and I get disoriented and anxious, prior to this , I could walk in the dark and not be off balance. One person said they played baseball for years and had to give it up because he could no longer "follow the ball while running to catch it" ...another a pro soccer player who could no longer play well . I race offroad motocross , I was doing really well, having a great time, getting some 1st places , 2nd's and 3rd here and there... then the balance problem started. I'd be coming into turns that i've done easily before and all of a sudden my body is taking me outside right when going into a left hand sweeper turn.... very hard to fight it . If I come to an abrupt uphill (hillclimb) the sudden compresion of the suspension and associated g-forces makes my whole head want to look down and roll over instead of ahead. I find it very hard to look ahead, and in turns thats where you win races, by looking thru the turn and at it's exit .... I cant look thru the turn , I get vertigo and either slow down, go inside or outside the turn. I feel like it's my first time on a bike ...Lol . Another woman said she feels like she's on a merry go round and the G-forces you feel pulling on your brain and eyes , I feel the exactly same thing ... I went to EEnt's , Md's , md's, blood tests, Lyme test, had 2 mri's , inner ear mri , video nystagmus , epleys , a little pseudophed , loads of pseudophed, phenylephrine, dimenhydrinate( old dramamine) tried every ear antibiotic , tried antifungals (diflucan every other day 2 weeks . Everything is normal and perfect hearing, 20/20 vision... although when the vertigo is "going on" my depth perception is gone and my ability to focus on near or far is diminished. The few times I've woke up and noticed it's lifted, I notice my vision and depth perception is 100% amazing...while it lasts . Just like the rest of you, nothing helps and no one has answers. As for stress , I went thru the military (Army) 87-94 and never had vertigo, bouncing around in trucks, tanks, planes, dehydrated, hungry fatigued to the max, felt like c**p but never off balance. And in 2003-4 I went thru the most stressful time in my life for a year, 3 devastating and life changing "sink or swim" events in a year . Got situational Anxiety to the max and somewhat depressed. But I never got uncordinated or off balance, not once . On the other hand , it's frightening when you feel a movement thats not there , that sudden fear can be mildly or moderately traumatic and it causes an instant anxiety ... and continual fear and anxiety over time can cause PTSD , general anxiety or depression in people who have no emotional or life situational problem to be anxious or depressed over. But this is when they try to start throwing SSri's , Benzo;s, antipsych's ... that will mask the 2ndary symptom, not the root cause. Eh, what do I know , this is just my feeling on it and I could definitely be wrong. Always be willing to accept yo could be wrong... haha

I Think there is enough of us with these "close to identical" symptoms that if we network together, maybe someone can help us.

I am just thinking out loud right now , maybe a private facebook, invite only ??? or maybe i could give an email . If there are enough of us in a group, we could contact some of the major clinics who knows what could happen . I'm a highly athletic 40 yr old and the harder I train, the worse this monster vertigo gets . It's frustrating , It's taking my life away , and many of yours from what I read.

 

It helps to know others are having the same symptoms but we need a solution. I might also add, I've had this since may (now it's nov) that's 7 months ... over these 7 months i've had maybe 3 or 4 times where it suddenly and completely lifted for about a week, during which time I cold ride at the extremes of my skill level, jog down one railroad track and had perfect vision /depth perception and nothing re-triggered the vertigo ... then 4-5 days later it comes back as usual . I had no injury , I never had "spinning" type vertigo , just "sitting in a canoe" syndrome or false sensation of moving. I think we should network. I can assure you , I have no alterior motive, no ads, no doctor or clinic to suggest at this moment . No herbs , no Homeo, no accupunct, nothing. I do have a medical background in an unrelated field that thus far also has no solutions to this. my only motivation here is to get a solution to this set of symptoms we have that excapes diagnosis . As a group, we ma be able to spark someones interest. If 50 people complain with almost the same exact symptoms, you can deduce that there are 100 people silent for every 1 person posting on the web . Big medicine knows this. I may try to forward this to everyone I see with these exact symptoms and see if anyone's interested. Please do not give ANY personal info to ANYONE . You have mentioned symptoms, duration and a screen name. Thats plenty . I'll try to get another email only for this , if there is any interest. I am in Pennsylvania . Again, I have no financial interest in this, nor do anyone I associate with directly or indirectly .

Update on me:

I got my Botox for migraines a week ago Wednesday. Docs says dizziness is from the migraine.  I tend to doubt it because it is constant, but...

After the Botox I had my worst migraine ever that lasted for 3 days.  Doc put me on a short course of steroids (6 days).  I am on Day 5 today.  I was hoping maybe the steroids would start to take down the dizziness.  Nope.  Bad, bad headache is gone but still feel heavy headed, like my head is too heavy for my neck, still have a constant mild headache, visual issues (like one eye is a different prescription than the other), neck and shoulder ache in the front (collar bone) and back (upper at the base of my neck) (muscular, not like I pulled anything), and of course the dizziness, and feeling like my eye muscles are being pulled in two different directions.  If I get out of bed in the middle of the night (which I do at least once every night), I am banging into walls as I work my way to the bathroom.

The Botox is supposed to take 2-4 weeks to work, so I am still hoping some of this goes away.  Monday I have an appointment with an endocrinologist.  Maybe he will have a different insight to this.

I think the Facebook page is an excellent idea.  Hpw do we get that started?

Karen from Arizona

Do you know what started your symptoms? Anything in the weeks or days before it began? Just curious...we all seem to have the similar symptoms, so it stands to reason we may all have been exposed to the same cause...(virus, mold, stress factor, genetics--literally ANYTHING)? Do you have a 'gut' feeling about the cause?

PS: THANK YOU for your service. Thank you.

Nov 24 2012 update OK, the root canal back in Sept took away 90% of the symptoms except for the anxiety that the dizziness would come back. Blood tests then showed I was slightly hypothyroid, early Nov update blood test same deal so started taking a very small dose of thyroid replacement and now I feel 100% + and have been for two weeks.
My advice is to try and get 5 days of AUGMENTIN from your doc as a trial. Augmentin (taken for other reasons) always fixed my problems with unexplained dizziness although docs could find no reason for this. Even when my tooth finally abscessed they could not see it on xrays. Only the cold test on the tooth (#3, upper right molar) convinced them something was wrong. They did they root canal even though they couldn't see if I really needed one, because I begged them. Once they got in there they were surprised that 2.5 of the three roots were abscessed. They cleaned everything out and now I have a crown on the tooth. My tonsil on that side is no longer huge. (No one ever thought the big tonsil was a sign of anything either!) These 6 months that almost completely wrecked my life were dental the whole time-- not ENT! Good luck everyone dealing with this-- it is a life-changer-- but do try augmentin-- NOT just penicillin-- Augmentin (or generic equivalent) is penicillin plus another drug-- for me penicillin did nothing but augmentin did. It is so nice to have my health back after all this time. Timeline again was 90% better since mid-Sept root canal and 100% better since Nov 9 thyroid, which took away the anxiety for some reason.

hey canoeonrollingwater. great post.

Although I think your idea of a Facebook page might be a great way to condense our thoughts and experiences. I feel if we moved to a "closed door" forum... it may detract from new posts outside your Facebook forum. new posts that COULD help us.

your idea of uniting our cries for help, to get the attention of someone in the medical community to help us, is a great idea. perhaps an online "sign up" sheet of some sort?  just my two cents.  

 

Dental issue huh?  i will totally look into it. glad to hear you are better.  good luck.