I am so depressed today I could just die. This stupid dizziness isn't getting any better. Ive tried everything and NOTHING helps!!!!!!! You would think one stupid drug out there in this world would help with these stupid symptoms, but nope, not for me.
I had my ENG this morning. That test put me into a whirlwind of dizziness. I cant even stand up straight. Everytime I move my eyes, the dizziness just gets worse. I cant take it anymore.
How can the stupid dizziness be from my vestibular system when just moving my eyes triggers the stupid dizziness? That doesn't make sense to me!!!!!!!!
To make things so much worse I have a 4 year old and she is driving me crazy!!! I can't put up with her either. I have no one thats totally willing to help me with her or my other two. My dad tries when he can. My other friends are just too busy too.
I feel totally hopeless. I cant keep going on like this.
Im sorry. I probably should have put this on the general board. I know my ENG test isn't going to show anything wrong. I just know its gonna be "normal" like every other stupid test I have ever taken. Its pointless.
Nancy
Posted by feelfit (Member # 12770) on :
Oh Nal,
I see that you have been at this awhile. I just went through a period like this last week. It isn't fun.
This takes a lot out of a person...but it also makes one see how resiliant we really are. We are strong people!
I hope that something helps and soon. You are in my thoughts.
Feelfit
Posted by Vermont_Lymie (Member # 9780) on :
Nal,
Sorry to hear that you are not feeling well.
About the dizziness -- have you ever seen a neuro-opthamologist? I have a friend with the exact symptoms that you describe, and a neuro-opthamologist was able to prescribe physical therapy to reset the eyes with the brain.
That stopped all the serious dizziness. I have found babs treatment most effective for stopping dizziness, but it seems sometimes that with neurological diseases, the visual system gets uncoordinated from the rest of the brain and dizziness results.
I hope you feel better soon. Hang in there please. Can you get a babysitter to take a night off?
Posted by psano2 (Member # 11711) on :
Nal, I know you've been posting here a long time, but I don't recall what kind of treatment you've been getting. Have you treated babesia?
Would it be asking too much to review what meds you've been taking?
I'm really sorry to hear how you're feeling, but don't give up.
Posted by lymeHerx001 (Member # 6215) on :
Nal, sorry to hear that, my heart really goes out to you because I have the same thing, we talked about this.
When you move your eyes and they start to twitch this is called nystagmus. Its basically a neurological reaction to the dizzyness.
Its not so much in the vestibular system as it is total brain and nervous system dysfunction.
I remember in June after my vertigo came on. I spent the whole summer in bed depressed. And in fact I was so upset when I went back to work in September that I joined this board and started posting. I was even on Wellbutrin for depression. That just made things worse with insomnia.
I dont have any good news for you other then these specialists are full of it!
Posted by Jill E. (Member # 9121) on :
I assume you tried Meclazine? We've rushed my dad (who also has Lyme, although his is more acute, mine is very chronic) to Urgent Care twice with horrible vertigo and the Meclazine did stop it.
I have intermittent dizziness from minutes to days, once to the point of falling down in my house. I can't imagine having it go on nonstop like yours. Mine often gets triggered by looking to the right, so I don't know if it's visual or compression on a nerve.
A neighbor or mine who quit work due to dizziness (I swear she has Lyme but she won't be checked) is getting help from a neuro-ENT - apparently there is one in my area. But this doc says her issues are coming from the inner ear, so maybe she has Meniere's or something that is simpler than our brain/CNS vestibular issues.
I'm so sorry you are going through this.
Jill
Posted by DebAz (Member # 18039) on :
Hi One Mom to another.
No matter what the symptoms I can totally relate and want you to know..I got diagnosed right about 4 years after I adopted 3 kids and had one of my own so at the time I had kids that were 12 11 10 9 and
I did not know if I would make it through what I needed to do.
I had no family and NOT one person to help and these kids were special needs.
I slept every day until that 3 pm and was there for them from the time they got out of school until bedtime.
I had them go with me grocery shopping so they could carry things and help.. I scheduled all appts in the afternoon.
But I felts as if that is all I could do was to give them that little bit of energy I had and some days I could not get out of bed and I learned to have lots of leftovers and other things they could eat or what not on those days.
I still have guilt.
My youngest is turning 18 in one week and will move our when he graduates. HE is severely mentally illl and has so many problems it crazy.
The others were in and out of treatment and drinking and running away and well.
All I did was Kids.. and Nothing else....
I have a grandson now though and I at first was the only one to take care of him for about 4 months and then I got him half time and now once a week.
I have no idea how i did that.. Thats all I did and I literally felt like I was not going to make it..
Stay Strong.. Stay with it even though it is harder than anything you have done.
BUT IMPORTANT!!! Ask for help more and more.. I DIDNT do enough of that. There was not help around but I did not reach out and I felt my friends were too busy too and I did not want to bother anyone..
But that was a my mistake.. Ask.. Its ok..
TAke care and I hope it helps to know someone has been there and been through it. Still going through it..
But.. Seeing some window soon..
Maybe one day I will live alone?? My 21 year old just moved back.. But that is ok.. HE helps out now..
PM if you would like to chat DEB
Posted by Nal (Member # 6801) on :
Thanks guys. I did get my ENG results. They say things look "near normal". My vestibular therapist thinks most of this is central nervous system related/lyme related. Great.
I see my LMD AGAIN tomorrow. I have seen him at least 3 times a week lately. Good thing he is only about 10mins away from me. I know very well how lucky i am in that area.
I contacted my church and asked them for prayers. I don't know what else to do anymore.
Nancy
Posted by dguy (Member # 8979) on :
10+ years and counting with the dizzies
Don't give up, don't ever give up!
I'm still learning new stuff, and only recently discovered new things to temper the dizziness.
Watch your symptoms closely and your reaction to various meds. Gather all your info about what makes your dizziness worse, and what lessens it. The pattern of that info will guide you to relief.
Share what you learn with the group, you may help another.
Posted by lymeHerx001 (Member # 6215) on :
Sounds like when I went to an regular ENT when my vertigo became chronic. They did a nerve conduction test, tested for fluid behind the ears and tested my hearing. All normal. The ENT said to try accupuncture. Im not rich...
My LLMD then ordered a MRI. I sat in that coffin for 30 minutes while they banged a bat on this chamber. The results came back all clear. I was more then upset.
quote:Originally posted by Nal: Thanks guys. I did get my ENG results. They say things look "near normal". My vestibular therapist thinks most of this is central nervous system related/lyme related. Great.
I see my LMD AGAIN tomorrow. I have seen him at least 3 times a week lately. Good thing he is only about 10mins away from me. I know very well how lucky i am in that area.
I contacted my church and asked them for prayers. I don't know what else to do anymore.
Nancy
Posted by Tincup (Member # 5829) on :
Hey hey..
I just went through a serious bout of that stuff. NASTY, nasty!
I actually almost made a deal with the devil that I would take back the pain and all other symptoms... if I could only have a day where I wasn't sick from being so dizzy.
The chiropractor... who I didn't think could help me.... noted my cranial base at the skull and C-1 were not right. They adjusted me and right away MUCH better. I had minor flares that week.. NOTHING like I'd been having... then was adjusted again.
That next week better still with only a few fleeting dizzy bouts.
Today got another tweek to the same spot and dizzy is a thing of the past now... I hope.
Maybe try it? You MUST tell them that this is your problem if you go to one.
And use ONLY gentle adjustments.
Hope that helps.
Posted by Nal (Member # 6801) on :
I do see a chiropractor who knows about the dizziness and yes there are lots of problems with my c-1. Might be worth investigating more. Thanks for the suggestion
Posted by sparkle7 (Member # 10397) on :
I only had dizziness for a short time. It's not fun at all. I hope you can hang in there.
My thoughts & prayers are with you.
Posted by Tincup (Member # 5829) on :
Nal said...
"I do see a chiropractor who knows about the dizziness and yes there are lots of problems with my c-1."
I'd say BINGO then. Can't be positive.. but hopefully it could help.
To note- Mine knew too.. but I wasn't able to track down the cause and had about 7 different possibilities for the dizziness acting up.
I had done several new things in the past 3 months... so instead of growling at one doctor or about a certain supplement or protocol... I just "mentioned" it to the chiro casually, so as not to "blame" them or make them think I thought they did anything wrong.
It wasn't till I was SOOOOOOOO bad that I could have grabbed the chiro by the shirt collar and shook the life out of them... just kidding there.. but I had to be in their face and say DO SOMETHING!!!
I actually told the chiro that I couldn't take it anymore.. and I was suddenly very depressed to boot... and that additional sharing gave the chiro another clue that the problem might be coming from C-1.
Hint- I had them be as gentle as possible on me... and ONLY use the little hand held activator. NO hands-on... or machine driven adjustments. That made a big difference.
Hope that you can get some relief. I want to cry for those having this problem.. bless your heart.
I don't know how your symptom feels... but I was so bad I would try to sit up in bed and would fall over. I had to hold onto walls, chairs, furniture, etc.. what ever was in reach.. just to move around. Nothing gave me a break from it.
Even trying to sit in a chair made me sway side to side badly... and being on the computer was VERY difficult some days... IF I went on at all.
If I tried to look or turn to either side I would have a sudden or shall I say increasing woosh feeling... and be dizzy as clown.
The worst was when leaning down or trying to look down to read or see the floor... etc. And I could forget bending down to reach anything not at eye level.. that move produced an instant floor in my face!
I was really fall down dizzy.
I noted again tonight if I try to stand still and upright... I will start to sway slightly... very slightly. But that is so mild compared to what was happening.
I posted here again after seeing your note... and added more details so maybe you could connect with something that could help? If I had to go through that.. maybe my experience will click and give you something that will help.
Please let us know how you are doing. I HOPE you get some relief.
Posted by Keebler (Member # 12673) on :
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Nal,
How long now since the steroid shot into your ear? About two weeks?
Be sure your LMD has you on clear medicine to address the infections - especially after the steroid shot. I don't know what else he would do in light of the shot, but extra measures may be needed.
All the other things can help, and attention to C1/neck is important. However, after the recent steroid shot, the infection(s) could be flared. To be sure you are treating the right infection(s), have you been assessed for coinfections as others have mentioned babesia and bartonella?
Viral infections such as HHV-6 can affect the ears, too.
I recall from previous posts that you are not on abx. Are you on some other specific treatment to address the infections, somehow, though?
I do hope this works out well - but most quickly - that you get some practical support for home and kids.
Good luck.
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Posted by Robin123 (Member # 9197) on :
If this is related at all to chiro care, I also find that dizziness is connected with C1 subluxation. Getting the C1 corrected stops the dizziness.
I don't have it constantly, like what you're describing, Nal, only right after an adjustment if it's not in the right place.
Also, there was a very good adjustment I received a long time ago - the occipital-atlas one, that was central to my spinal neck health.
Chiropractors are all different in what they know and how they adjust. I think it takes very good ones to do these adjustments well.
Posted by Nal (Member # 6801) on :
Well I went back on my ATivan. At least it helps a little. The ENG didn't really show any abnormalities. I get the full results on Monday.
My LMD checked my neck today. He said is could possibly be causing some of the vertigo too but that the best treatment for that is still the vestibular therapy and continue with adjustments.
I told this therapist about all the eye movement inducing dizziness. She said she'll give me different exercises when I come in next week since she thinks its still central nervous system and my lyme contributing to it.
So well see. Im back to work next week Thursday. I cant stay home forever. The exercises she gives me makes me feel worse. I hate that but ill continue for now.
Nancy
Posted by lymeHerx001 (Member # 6215) on :
Nal, it sounds just like my situation!
Tell me, are you chemically sensitive too? One comes with the other with me...
Posted by Keebler (Member # 12673) on :
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Nal,
The exercises take a while.
What helped me was doing Qi Gong. But, at first, I had to lie down and just sort of watch. then from a chair, just doing what I could in short spurts.
Even just watching a Qi Gong DVD is actually helpful.
There is also a book and DVD called "Yoga for the Eyes" that I found helpful.
I know the exercises your PT has for you are specific - and that is good - but if they make you too much worse it may be too much.
It is excellent that she knows about lyme. I'm glad to hear that.
Good luck - and hey, be sure not to buy anyone stripes or checkered sweaters for the holidays! This might not be the year to break out the really high heels, but I hope you can have some great "Kodak moments" anyway.
I just found a used Ekornes Stressless Recliner from Craig's list. It helps to support my head and is just right for my spine. It also goes nearly all the way back for rest. I can sit and have head supported while others talk. Putting in lower wattage light bulbs can help, too.
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