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

Dramamine was the first medicine they pushed on me, telling me I had Vertigo.  It did nothing but made me tired because the diagnosis of true Vertigo was incorrect.  If you have true Vertigo, Epley's maneuvers should resolve the problem for the most part.

Thankfully at this point today my headache has toned down (most likely because I started back up on my Estrogen yesterday) and I may pass on the 3 day hospital outpatient treatment.  I am still VERY dizzy - it so feels like my head/neck muscles are way too tight and are pulling on everything, including my eyes and I still have a dull headache, but it is tolerable for the time being.  I find it so hard to believe something is not working right in my neck/back/shoulders that is causing this.

I see my acupuncturist/chiropractor today.  I think I will discuss a full chiropractic exam and get his opinion. 

In the meantime, I am fighting with my insurance company to get approval for hormone replacement therapy and a comprehensive TMJ exam from a neuromuscular dentist.

The process takes SO long, from getting approval to getting appointments to trying different treatments.  I am going on 2 years now.  It is frustrating, but I am determined.

 

Karen from Arizona

 

hey mafixit... glad your headache has subsided for now.
it is horrible waiting for the system. REALLY horrible. medical systems can be sooo slow... we want answer's NOW. but the silver lining is you that you insurance company helps with the expenses. We all feel your frustration. Keep pushing. i won't stop til i hear a reason to...hopefully we can all find cure soon.

we can do this. we will do this. hope you feel better today.

Yeah MrFeelBad , I described it similarly , I feel like I have a raw floppy london broil laying over my right forehead and eye .  The face book name is    Motionbalancefatigue     , looks like ya cant have a link on here , lol ... guess they want to keep their "captive audience".    Maybe someone else can make a facebook ,  I just had the idea  , doesnt matter to me who makes it or organizes it but everyone with this condition might get a solution if everyone is organized .   Otherwise we're just random people venting about vertigo in a forum .       These forums are a great asset , but in the end they are not a " dot org"  , they are here to make money and more members = more marketing revenue .... owell , thats another story ... haha

oh , just to clarify , the dramamine doesnt stop the problem , it just mellows me out a bit , I dont feel as frustrated or edgy about being off balance ...  I know it's still there , im just less concerned about it ... I only use it if maybe once a month ... and yeah , epley maneuvers didnt do anything . 

 

It has been really up and down for me this past week. Felt great over last weekend until Sun. afternoon, I felt TERRIBLE!, but then I felt great on Mon. Yesterday I felt good but a little 'spaced out' and a little dizzy. Today I feel really good so far. The big thing with me is that I haven't had a vertigo attack for 3 weeks (or more). Not since my first acupuncture treatment for it. I have never gone for even a week without an attack for 2 years. He's been treating me for my sinuses and sore hip, too. The hip is 99% healed....after hurting for 8-10 mos. What a relief! and one less thing to be anxious about. My sinuses are almost done draining, so my head feels clearer. I'd still try acupuncture, mrfeelbad. It has worked for me on many levels. I don't plan on quitting--ever! PS: You may be sore after your acupuncture treatments, I still get sore. Wherever I have a siezed-up or really tight muscle, it 'fights' the needle and I'm sore. Only lasts for a day tho--just like you worked out really good. Also, saw my dentist; it doesn't appear to be the tooth and I'm on an antibiotic and Chinese Herbs for my sinus infection. If my tooth still hurts in a month, he said to come back and see him. He thinks the pain is related to my sinuses. That's all... Take Care, everyone. I'll keep you posted

oh dear, i'm sorry you are feeling so poorly again betterhalf. i was so optimistic for you. that sucks! i believe we all were so glad for you.  

we don't know what it's going to take to heal... you said yourself you had this for a couple years. it may take sometime to get 100%. don't give up.

on a separate note... i finally had me a better day. I've been feeling ROUGH lately.... while on this metal treatment. the dizzies have been worse than ever... BUT TODAY my head is out of the fog for only the second time in months...MONTHS!!

I feel like this metal toxicity detox is doing some good.

I'd be lying if i said i wasn't hopeful that ridding my body of the metals, will cure my dizzies too... but i'm not gonna get too excited YET. I think my recovery will take  a long time to undo...with all that has been so wrong, for all this time.  I'll keep you guys posted.  I'll try to remain optimistic and positive.   

I AM NOT TELLING ANYONE HOW TO LIVE.. I'd think about doing a metal test.

It was this forum that turned me onto the metal tests in the first place. The person who wrote into this forum said, he spoke to doctor in Massachusetts... Dr. Jackson (i think i'm allowed to mention names just not links.... if this forum's moderator asks me to retract his name... the doctor in Massachusetts, has the same last name as Peter, Phil and Arnold).  ;)  I THINK i read, that he claimed (on this forum) that the treatment cured him.

i emailed Dr. J. he seems like a good, knowledgeable guy.

boatonrollingseas. I don't know c**p about you.. but you ride motorcross.. you were in the military... all that exhaust.. who knows bruther... worth a shot.

the rest of you guys.. i don't know your backgrounds AT ALL... but perhaps you might think about metals too.  Anything is possible.

I was on some pretty nasty jobsites when i was a tradesman... its what lead me to believe i should try.  

I also had food allergies for years.  it wasn't til a couple months ago, that my naturopath healed me.  Perhaps my body has an absorbtion issue.  I'm no scientist or doctor (except when i watch grey's anatomy and house).  but i will try almost anything to be me again... no matter how far out there it is.

***I AM NOT SAYING THAT THIS IS EVEN REMOTELY CLOSE TO A CURE FOR US... IT'S TOO EARLY TO SAY IF IT'S WORKING FOR ME( I'm only part 1 of many parts)... but today i feel a little more like my old self.  A LITTLE.  It's only the second time in months. i'll take the win today.  i'll keep you all posted.

mrfeel- soso

Today's update:

 

Today is Day 15 after Botox.  (It takes 2-4 weeks for Botox to start keeping migraines away)

Day 3 back on my estrogen (birth control pills), which seem to keep the bad, bad headaches at bay,

I was scheduled for intravenous headache treatment at the Mayo Clinic Hospital last night, but since I was in pain at a level 3 instead of a level 8, I called my doc to make sure I should still go in.  They never called me back to let me know, (I called to check and was told they were in the process of making return phone calls) so I did not go.  I will have to call them again today to see what happened and what the recommendation is.

For now I stopped all supplements and will add them back one at a time.  I will just take my Lipitor for my high cholesterol for now and add back a supplement after one week.  A reset, if you will.  It appears that my cholesterol is a genetic issue.  I eat high protein, low carb, no processed foods or grains. 

Slept OK, or at least I only woke up a couple of times which is good for me.

Felt good upon getting up (thought it was going to be a good day), but within 15 minutes, I started getting the light sensitivity and eye/vision issues again.  Feels like my eyes do not want to look forward and I feel like I want to close one eye and just use the other one.  My computer screen seems overly bright.

Mild headache, on the verge.

Feeling tired, like I did not sleep.

Usual dizziness when turning my head, walking, whatever I am doing.

Left foot is tingling, left leg from hip on down feels crampy, left shoulder blade has slight muscle spasm, left shoulder/neck muscle hurts to the touch, left side of my face from cheekbone to jaw feels like I am on the tail end of novocaine.  Leg cramps are back.

All docs have ignored the left side issues.

I have to redo my Food and Chemical Intolerance Panel, but can have the blood drawn until I am off steroids for 2 weeks.  That will be a week from Sunday.  I am having a urinary cortisol test done on Monday.  I have some food allergies (skin tests) but this panel is a blood draw and much more comprehensive.

Waiting to see an internist at Mayo who is board certified in Complementary Medicine on January 2nd.  Discussing hormone replacement therapy for migraine relief with a specialist on Friday (out of network for insurance purposes)

 

Karen from Arizona

YAY! Hope you have more and more of 'em. And maybe someday change your name to 'mrfeelgood!' :) PS: so far so good today....

MrFeelBad , I thought about metals and even solvents exposure ... the thing is , why do I ocassionally have a period of time that lasts from 2-10 days like every 2 months or so that it completely lifts ???  The balance problems go away and my vision gets 100% fast and clear ... It's kinda like a pressure behind my eyes goes away and I feel so "level footed" , balanced and clear sighted, and I even think faster .  It's the fact that it has lifted 3 or 4 times over the last year or so .  When it's gone, it doesnt seem to be provoked by hours of strenuous physical activity or anything ... then a few days to a week later, bam it's back  ...   wish i had an answer .  I haven't eaten hfcs for almost 2 years and ate no gluten for about 4 months ... didnt help , and actually the last time it lifted recently , I cheated and ate all kinds of cake and pies and junk at a work party on a friday and the next day it lifted , felt great (for 1 day) ... go figure... lol

 

good points. I envy you... you are lucky enough to know that your body is capable of balance, Guest. i've been on a continuous downward spiral for the past year or so. Obviously I can offer no true answer to your statement. I will say this much... i have had random areas that have been freaking out on different days of my treatment. one day i got super sore knees. one day the tightness between my shoulder blades was insane. For two days the weird smell symptom in my nose went away(they're back).... the next day the symptom's were gone. It ALMOST feels like the metals that are in me, are moving around, and as they move... they cause issues... at least that's what i want to believe. that said, i think your observations pose a lot of questions. When i listen to you describe your story... I think allergies. I also think psychological? Based on your story... i can understand why doctor's might hypothesize a neurological issues and not organic. man i hope it's all in my head. it don't feel like it though.

Hi everyone, I guess I'm more in need of comfort than anything else right now. I have been feeling this way for a little over 3 years now and now it's a "mild" version of what it was, 70% myself, so I can drive again and seem like I'm normal/not sick to others but I feel so horrible. It's a different kind of hell. I feel unreal. Delusional. I really hope this is all in my head. What else do you expect from not working, having no social or any kind of life for 3 years? I'm just very depressed. It's so hard to concentrate to even try to figure this out. Each and every one of our experiences was so different, and seems that stress was the only factor all of us have in common. :'( That is very discouraging. I can't imagine living the rest of my life this way. I'm 22, this all started when I was 19, and I can't believe this is my life now. Please someone help.

Guest, Hang in there. I also have times where I feel down about this, but I always remember tomorrow is a new day and may bring better things.

I also look at what others are suffering from and think how they would trade me ailments any day of the week. I have a friend going through breast cancer, another in the hospital on dialysis waiting for a kidney, etc. It kind of puts everything into perspective. You will get better, this is not your life from now on.
I am not trying minimize what we are going through at all. It sucks every day. But, you need to pull your self up and get active. I tend to feel better when busy, and helping others through volunteer work makes me forget my troubles for just a moment. I was also active, exercising, traveling, etc. Now I constantly worry about how I am going to 'feel'.

Have you thought about talking to a counselor or finding a support group in your area?

Karen from Arizona

hey guest, We all know how you are feeling. And i feel horrible for you now. this is nothing that a 22yr old should be thinking about.

I know it's hard to understand... mafixtit hit the nail on the head though... i too saw a friend pass away from breast cancer. She left behind two kids (1.5 and 4 years old) and a her highschool sweetheart husband(been together since 14). here's how i look at this with from my perspective.  I use her as my inspiration... not everyone passes from that horrible disease... and she fought like hell everyday she had it.

I still have a fighting chance.  Though nervous, wobbly, and embarrassingly afraid of a flight of stairs.... I am still the willing to fight this. you will have up and down days... I can sympathize with you, but you're not alone. we're all right here with you.. living with this thing.  We'll hammer something out.

I know it's no way to live. Making yourself feel better by thinking that things could be worse. using my buddies wife's story as my inspiration is not how i want to live.  But, she's my crutch to keep me from feeling depressed about this situation.  My hope is that one of us stumbles(excuse the pun) onto the cure... and we all jump onboard.  that will be a good day.   

Update on me - the Botox has really not helped - it's been 6 weeks. And of course my headache doc is on vacation for two weeks and then is retiring to part time.

I started hormone replacement therapy with a Women's health specialist and have been on that for a week now.  I am no better - in fact, I feel worse.  She has me on Estrogen Cream and Progesterone Capsules, along with a prescription dose of Vitamin D3.  As soon as I go off my birth control pills I feel even crappier.  The hormone replacement is supposed to relieve that.

I found that I have several food intolerances - things I eat every day - so the diet is changing again.  No more dairy or gluten.  You would think that removing myself from synthetic hormones, eating as healthy as I can and taking my prescribed medication would  help.  Nope. 

The pressure in my head has increased, as has the dizziness.  The headache neurologist put me back on a short course of Dexamethasone for inflammation, which is doing nothing.  It feels like someone is pressing on both sides of my head just above my ears and my eyes feel heavy, as does the center of my forehead - almost like I have sinus issues.

I still have some degree of a headache every day, and now the dizziness has increased as has the ache in my neck and upper back.

Someone has to be able to figure this out - come on now.  It's been over 1-1/2 years without relief and only worsening of symptoms.

And of course the anxiety is kicking back in - that never helps.

 

Anyone else here feeling any better? 

 

Karen from Arizona

hey mafixit... dang.. really sounds like you are having a rough time. i am sorry to hear it.

I'll tell you what.... i didn't want to write anything to the post til i had some solid results... but i' like to offer you something that's working a little for me.

METAL test- since starting metal treatment i have been feeling much better (not cured still dizzy as c**p) but  waaay more clarity, less pressure in my skull.

I'd say my overall health feels better (but not the dizzies :( ).

go see your doctor or a naturopath and ask about metals. Ask them for a URINE test, NOT the blood test.

Here's what i've found thus far:

- my head is less foggy

-it takes a while for your treatment to start working (i just started feeling better and its been around 5 weeks)

-i take st. john's wort to take the edge off any anxiety or psychological -****sometimes clearing metals can make you feel worse -i feel a tiny bit more energetic.

-I felt HORRIBLE for a few days during the treatment (i had the goodbye chat with my wife... that's how scary it got for me those days)

- i can balance a teeny tiny bit better(not fully) on one foot the best part is the head clarity... i haven't felt so clear in months....MONTHS.

I am going to carry on. I'm going to carry on with my neck and back physio... as they feel really sore and stiff still.

I was in construction for a LOT of years(poor enviroments)... i smoked for years... i have food allergies... the metals could've been introduced anywhere. absorbtion has something to do with it as well.

It is really reaching... but so is everything... til we get better. I hope this will help you mafixit.