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Old 11-11-2007, 02:56 PM   #1
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Unhappy Constant lightheaded dizzy odd feeling for 4 months now.

Ive seen alot of posts from people out there experiencing virtually the same symptoms as me, so I thought I would give this a try to help me feel somewhat better and possibly get some answers. So here is my story. Back around the first to middle part of August I begain experiencing a dizzy lightheaded and/or heavyheaded feeling constantly, it came on suddenly one day and just never left me. I went to the ER like 2 weeks after it began and was dismissed as having a virus after some bloodword with elevated white blood cell count. So it continued on then about a month later I went to a general dr, and was given antibiotics for 2 weeks and a steroid predisone for 5 days. Well neither took away the symtoms but the steroid made me wake in the night with the blood vessels in my eyes pulsating horribly with an awful headache so I stopped taking that. Next on to the ENT where I had a hearing test and was examined hearing perfect had a CT scan of sinuses and I DEMANDED one of my head with contrast. Both came back fine. During this time my symptoms got way worse as did my anxiety of thinking I had a Brain tumor. The dizzy odd feeling is always there, but the anxiety of thinking I had a tumor and acually preparing myself in my head for death had caused me to clench my jaw so tight that I was actually causing myself tension headaches the ENT had one useful bit of advice, to keep my jaw loose which I did and it has helped with the headache part. But now I am all hypersensitive to everything about my body some days its just the weird feeling some days my neck feels all stiff and almost like the blood vessels in my neck are constricted causing limited blood flow to my brain. My heart pounds when I stand up and other times for no reason I have had some chest pains and this odd cold feeling in my chest at times. When it first started I had different parts of my face go numb but I am unsure which symptoms are the anxiety and which are the actual. Its all so frustrating the only REAL TRUE symptom that never goes away is this feeling in my head like a brainfog dizzy odd lightheaded/heavyheadedness just not normal me. I cant enjoy anything anymore I dread things I used to love. Im only 26 I just want to be a good mom and wife and this is ruining my life. Ive been to the neurologist and he did bloodwork for lupus, lyme, b12 definincy, west nile encepilitis, and a few other things all negative. I have an appointment with the cardiologist this week, so we will see where that leads. I have asked the Neuro where we should go next with this but still have not received a phone call back yet. Its all messed up its like I have to figure it out on my own and tell them where to go next ya know? I have heard that Lymes usually doesnt show up on bloodwork. I dont know I just want to wake from this nightmare and be me again, I constantly spaz out thinking I am going to die. I also have a horrible sensitivity to light as in floresent lighting I cant even barely go into a store and can hardly tolerate the drs appointments. This makes things hard as well. My husband now has to do all the shopping on top of working a 60 hour a week job. I have 2 little kids one is 6 and one is 2 and I can hardly stand to be around them because they are loud and move alot and it makes my head spin when all I want is just to play with them and be normal. Please if anyone is feeling similar symptoms lets talk about it I really need a support system of people feeling like I feel. I feel alone and the anxiety is hard to place on the back burner not knowing what is wrong with me.

 
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Old 11-12-2007, 07:42 PM   #2
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

Go to the inner ear board.

 
Old 11-13-2007, 07:17 PM   #3
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

Ive been to an ENT its not an inner ear problem its also a constant dull ache headache that never leaves and becomes a horrible headache every so many days.

 
Old 11-19-2007, 12:20 AM   #4
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

Quote:
Originally Posted by DizzyAmber81 View Post
Ive been to an ENT its not an inner ear problem its also a constant dull ache headache that never leaves and becomes a horrible headache every so many days.
I have generalized anxiety disorder and seem to have similar symptoms. I am constantly dizzy and experience some brain fog. I have had a CT scan which came back fine, but I don't know if I shuold go to a neurologist. All the Drs. just tell me I had GAD and give me anti-depressants and anti anxiety. Do you experience any nausea? cold sweats? anything else?

 
Old 11-19-2007, 03:54 PM   #5
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

Is your brainfog constant? Or like a constant presurre in your head that NEVER goes away sometimes better than others? I do have a mild amount of nausa especially in the morning. I also have shaky vision at times and like a buzzing feeling in my head sometimes too. Also sometimes floaters in my eyes. Also the back of my neck at the base of my skull hurts too. I dont really have the sweats or anything like that though. I have anxiety too but my anxiety is caused by my feeling so yucky all the time. At least I think so, because I can be fine not feeling any anxiety at all and the symptoms are always there then when I start to feel the anxiety come on then I do feel worse but I think If it were just anxiety there would be some sort of break in between and these symptoms never let up. Im still undergoing testing for different neurological problems. Today I had two different types of eeg's done and later in the week a chest xray next week I will probably have an MRI. If its none of those things Im looking into Cronic migraine or TMJ If not that then some sort of neck problem I have heard having neck problems can cause all sorts of wacky stuff too. So then if its none of those things then I guess its all in my head literally. I have also had heart tests done that seems to be fine. The doctor is looking at MS or seizures right now. I had a Lyme disease test done but I have heard those are notorious for giving false negatives. I dont know what are all your symptoms??? Doctors often like to write things off as anxiety if you really feel there is something beyond that then you are probably right and it is always best to have it checked if only for peace of mind. Let me know all your symptoms and I will keep you updated as to if we find what it is or if it turns out to just be generalized anxiety disorder. Hope you feel better.

 
Old 11-20-2007, 06:01 PM   #6
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

Amber, join the club. I have had the exact same sypmptoms as you for the past 7 years. Mine started one morning when I awoke and hasn't stopped since. I have been to numerous drs and had numerous tests....all come back normal. MRI, ENG, 3 hearing tests, 2 vision tests, blood work, etc.......
I finally found the TMJ posts and low and behold, that is what I have. I just had an exam by a specialist last week and had an xray of my jaw as well. I have a follow-up appointment next week to discuss the results of the xray.
The best way I can explain my dizziness is a rocking, swaying motion that never ends. If I go to the market and start looking around...BAM it gets worse. At nights the flouescent lights in my living room make me squint. I have had 3 migranes and I suffer from headaches on a daily basis now. My neck is always tense, I have lower back pains and the energy level of a snail.
According to the dr, these are all symptoms of TMJ. I wish I learned this years ago before the countless drs telling me nothing is wrong with me. My head always feels like it doesn't belong to me and my eyes aren't in sync with my brain. I can't explain it any better. Anyway, I hope this helps you. I suggest you see a TMJ specialist so he/she can examine you.

Hope you feel better

 
Old 11-21-2007, 06:49 AM   #7
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

Amber:

I would see a Headache Specialist or Neurologist who specializes in Headaches... The sensativity to light is a sign of maybe Migraine.

I wnet thru a similiar situation for 3 years where I was diagnosed with just anxiety. I have Chronic Nausea, Off Vison , Feel off, head pressure or heavy head, You feel like you said off from your body. I was diagnosed with Chronic Migraine called Vestibular Migraines. I was put on 3 drugs Zoloft, verapamil, Klonopin by ther Neurologist. I was 100% for over a year and they tried to see how I was off the medication. I was good for another 6 months. Then the seasonal change triggered me back into a migraine state. Without Medication I relapsed. I am week 4 intoi the relapse back on medication as the medication can take months to work...I would look into that.....

Howie

 
Old 11-21-2007, 07:26 AM   #8
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

Hi Howie,
Thank you for your response that makes me feel better. Ive been praying that it is only migraine or even anxiety. Ive been seeing a neurologist and he is doing all the appropriate tests and I assume after I get the MRI and a chest xray if nothing is found then I will try the migraine meds hopefully. I brouhgt up migraine and they dont seem to think it is he is leaning more towards MS he said migraine wouldnt make me dizzy and presurre 24 hours a day for 4 months but I have seen many people saying it does, so if everything else turns out ok Im going to push the migraine issue. Thank you again for your post it truly helps the anxiety I am experiencing about this situation, I have imagined that it is a brain tumor or lung cancer since this whole thing started. So thank you. I hope you get to feeling better again really soon!

Last edited by DizzyAmber81; 11-21-2007 at 07:28 AM.

 
Old 11-21-2007, 07:40 AM   #9
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

You need to see a headache Specialist. If you look on line Chronic Migraine Defintion:

Chronic migraine implies symptoms that occur more than 15 days per month and often daily and constant

Mine is more Specific and is called Vestibular Migraines...
With that being said I had all the test you did and before you can assume Anxity or Migraine you need to rule out everything. Try to stay calm...

your symptoms do sound typical and Migraines and Anxiety go hand in hand.. Thus Zoloft is a treatment

 
Old 11-23-2007, 03:36 AM   #10
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

hey there!!!
i just came on this after almost a year of suffering, i have almost identical symptoms to yourself!!
mine had been with me now for a yr and ive had many tests all non conclusive including visits to a cardiologist, blood work and a visit to a neurologist!!

im only 24 an one night i went to bed an woke up in sweats with my heart racin pains in my chest an severe dizzyness these feelings have been with me ever since every day

these days i am now unable to do any exercise as as soon as i rasie my heartrate it feels as though my heart is thumping in my chest!! mine happens also jus of standing up! its a very unpleasant sensation i asked my friends does this happen to them an they said no!
my daily symptoms r aches in my arms an legs headaches chest pain an a general lighheaded buzz all day every day im really worried cos i should be in the best of health specially at my age!! i also got the impression doctors tend to think just because your young doesnt mean you cant be sick when its far from the truth!

i have now been told i must jus get on with it an he gave me medication for anxiety although i refuse to take it, before this happened i was a very active person who was exercising 4-5 times a week and a active social life without any worries!!
i think whats worse is that you actually dont know wats going on with your body as doctors cannot tell you that u have an illness, i really feel for you having children aswel as wen im feelin like this i jus want to relax so i can imagine how hard it is for you!!
hope you find out more progress on your situation an keep me updated good luck
thanks

 
Old 11-24-2007, 08:20 PM   #11
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

i would have to agree with Howie...i have similar problems for the past 6 months now, but now mine has morphed into mostly vision issues and headaches on almost a daily basis (sometimes just a quick pain behind my eyes). i have had ALL the tests done under the sun like you, and the only difference was my B-12 was low, and I have been treating that-it is now within the correct levels. however, my symptoms are still here, so they definitely think (like in howie's case) that it is somehow related to vestibular migraine. i was prescribed nortriptyline and i will start taking it this coming week. i am also your age and i feel so alone with this...don't worry though, an answer will come i have been hangin in there goin insane, but at the beginning of all this my anxiety was so high, i was having panic attacks (have never had one before) and had to take xanax for a month to calm myself down.
hang in there

 
Old 11-30-2007, 08:39 PM   #12
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

DizzyAmber,

I hope you have been able to find out answers. To me it rings of Migraine associated vertigo (MAV), but I am not a Doctor. It all sounds so familiar to me.

Good Luck and keep us posted.
Pam

 
Old 11-30-2007, 09:47 PM   #13
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

Yeah that sounds like Migraine Associated Vertigo to me also. I went to UCSF (Univ. Of San Fransico) and the doctor told me its a 98% thats what i got and those are my symptoms. I feel off balance, spin occasionally, and I get bad headaches. So perhaps searching for a really good doctor like at a Univ. or something would be of good benefit to you. Good luck! Best wishes!

 
Old 12-05-2007, 05:25 PM   #14
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Re: Constant lightheaded dizzy odd feeling for 4 months now.

DizzyAMber,
That sounds exactly what I have. I was dx's with Migraine Associated Vertigo. It was so horrible. I couldn't shop due to the lights, I coudn't drive. There really isn't a specific test to verify it. They usually just try you on a preventitive migraine med and if it works then that is what you have.
I took me 9 months and 9 specialist before I was diagnosed. Finally, it was a vertigo/inner ear specialist who diagnosed me.
Good luck.

 
Old 12-07-2007, 10:26 AM   #15
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Thumbs up Re: Constant lightheaded dizzy odd feeling for 4 months now.

Small update. More tests still nothing. MRI is all that is left. But I stopped all caffeine intake and no chocolate or ice cream yogurt and some grains. So It has improved slightly enough that I can now get things done rather than just lay on the couch all day. I still have dizzy spells and that weird feeling but now I have been able to notice that the weird feeling is still there and noticeable most to all of the time but usually becomes stronger before a BAD headache and then after it It starts a like a day or two before and lasts a day or 2 after the actual headache and the headache lasts all day until I sleep which improves it. I was feeling pretty good until......... da da da......... I ate a twist Icecream and excuse this but got my menstral cycle. About 30 minutes after eating the icecream I got a bad dizzy spell and then the feeling became worse the next morining I got my monthly cycle and behold horrible headache for 3 days. I have a bad headache at least every 2 to 3 days sometimes lasting for days at a time. Its all in my temple area. Stoping the caffeine has made it better enough that I can recognize a pattern to it. Before it was just constant pain dizzy confusion so much that I couldnt even think let alone establish a pattern. So I am thinking It really is some form of migraine. Lyme is still a possibility in my book since it can cause migraine. But vestibular migraine does sound very probable to me since you can have that and the regular headaches too. I think I may have several things going on hence the weird array of symptoms. Anxiety= chest pains shortness of breath palps ect. and then the rest are due to this condition. I apologize for the length of this just wanted to give a full update and maybe toss around some ideas for others suffering from simular symptoms. I will update again after MRI when I finally possibly get a diagnonsense. Thank you all for the wonderful support you have given.

Last edited by DizzyAmber81; 12-07-2007 at 10:28 AM.

 
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