Dizzy, no explanation

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Michelle D

Michelle D

Well-known member
Joined
Jun 14, 2010
Messages
620
Location
Florida
Since my mvr I've been dizzy often and lightheaded. I'm almost 4 months out now. I've had my blood tested a million times and no doctor has given me any explanation. It's really affecting my life. Today I almost fell on someones table. Has anyone else had this problem and got any answers?
 
What kind of dizzyness are you experiencing?

Do you feel like You are spinning? or do you feel like the World is Spinning?

Both of those conditions are more likely to be related to Inner Ear and Balance issues.

Have you been examined by an Ear, Nose, and Throat Physician ? (Otolaryngologist)

'AL Capshaw'
 
For a very long time post op the occasional dizzy spell would come out of no where and scare me to bits.
Several times I had my husband help me get to my bed to lie down for a few minutes until it passed.
My diet was great; low sodium, low fat, balanced meals and portions.
These days it is extremely rare to have one of those same spells like before, so hopefully you will continue to improve also.
 
I was dizzy for 10 months solid after my surgery, no one could ever find an explanation. I fell down stairs and had to pull over while driving on a couple of occasions. At almost 2 year out, I have virtually no dizzy spells.
 
I had dizzy/near black out periods for over 9 months after my initial surgery, usually in the morning, usually when standing up. It was worst when I was out trying to field train the dogs.

Part of it was adjusting to all the new meds, I think. If you aren't on a lot of meds, it may just be recovery time, or could be non-heart related.

Remember, you had a really rough time of it, and you aren't fully recovered yet.
 
I'm glad to hear I'm not alone, though not glad that others had to be frustrated with this as well. Sometimes I think it's migraine related because I also get aura frequently on my very dizzy days. But I don't want to self diagnose. It's just aggravating that no doctors can tell me anything but it is severely intrusive. I'm to anxious about driving because of the dizziness, and I won't go for walks by myself. If they can't diagnose me that's fine but I think they just don't take it very seriously. I think I will go to an ear nose throat doctor and if I get nothing out of that I'll go to a neurologist.
 
I've had inner-ear/balance problems off and on for many years -- not heart-related. Just knowing about it helps you adjust, I've found. The worst part is having the condition, not knowing what it is, and panicking or stressing out about it, which makes it worse. There are ways to compensate and relax and get along okay with it. I think consulting with a specialist is a good idea.
 
hi there

just wanted to let you know that all of my recent testing is because of this problem too...

i felt great for 2 months after surgery. no pac's or anything. i was on the road to getting back to 100%. then in late july/august, i started to notice i was getting what i thought was dizzy. i kept called it dizzy but i have now learned its not really dizzy, it is lightheaded. i don't feel as the the room is spinning, i just feel not 100% there, i feel like i could faint at anytime and i am off balance and driving is difficult. it was also around this time that i started to notice SLIGHT pac's. now obviously the pac's and lightheadness have gotten worse and do not go away at all. i wake up with it, it gets worse as the day goes on. night time being the worst.

i don't trust myself to drive my babies anywhere other then my town. i feel weird. it's hard to explain it to people who don't have the problem. this is where i think my family doesn't believe me or that it is all in my head.

so finally after almost two months of not being able to deal with it, in september i went to my local cardiologist. he said there is nothing wrong with me. and gave no answer for being lightheaded. he told me to see my primary care doctor.

so i went to see my primary care doctor.
she ran all possible blood work and it came out normal. she didn't have any answers for me except to go see an Ear Nose Throat doctor and a Neurologist.

so i saw the ENT first. he did a hearing test among other tests at first he said it could be meineres but then after my results he said no i dont believe it's your ear, see the neurologist. but he called me a week later to see if i had been to the neurologist yet and told me if they don't find anything to come back and see him.

so then i went to the neurologist. she did an mri, hearing test, dizzy battery test and everything once again came out fine. at first she thought i could be having vestibular migraines. but after my results she said nothing was found that could be causing this problem.

so i decided to go downtown to my cardiologist there. and this is what my most recent posts have been about. (she did the echo, holter monitor) so as you know she said the pac's were benign, more of a nuisance and wouldn't be causing my lightheadedness. she saw my echo results but wanted to see the physical cd so i am still waiting to hear back to her from the echo CD copy i sent her earlier in the week.

nobody has answers. nobody seems to understand. my family probably thinks i am just complaining or trying to find something wrong. i just want an answer or solution. it's driving me crazy. i have 1 million things i would love to do today but can't leave the house with my kids for too long. it is really hindering my life here. i feel like if someone told me i would be like this the rest of my life i would go crazy. it's not a nice way to live, since i am not 100% all there. it's like a fog. sometimes i feel like i am watching a movie of myself. weird way to explain it i know.

so are you truly dizzy, (room spinning) or are you lightheaded? this makes a difference to the doctors i have learned. like i dont feel like i am spinning around, i just feel like i am floating around and that my head is not connected to my body. my vision is different and like i said this all makes it difficult to drive. i feel off balance.

also about 7 times now, i have gotten sudden vision problems for about 1 minute. it's always in my left eye and its like my eyes are crossing or something strange. this is what scares me the most. thank god it has not happened while i am driving. one of the doctors thought it could be TIA's. so of course i read about those, and it says you are more likely to have a full blown stroke within 90 days of having a TIA. great. but once again, they showed no concern or gave me anything to help with those.

so i am truly with you on this. you are not alone and it's making my life miserable. everyone said i would feel better after this surgery. funny thing is, i felt fine before my surgery, i only got the surgery because of my aneurysm which didn't produce any symptoms. i feel like i ruined my life by getting the surgery. i know this is a negative way to look at the surgery when so many have had their lives saved by it. but for me, it's taken me backwards.
 
malibu82 said:
hi there

just wanted to let you know that all of my recent testing is because of this problem too...

i felt great for 2 months after surgery. no pac's or anything. i was on the road to getting back to 100%. then in late july/august, i started to notice i was getting what i thought was dizzy. i kept called it dizzy but i have now learned its not really dizzy, it is lightheaded. i don't feel as the the room is spinning, i just feel not 100% there, i feel like i could faint at anytime and i am off balance and driving is difficult. it was also around this time that i started to notice SLIGHT pac's. now obviously the pac's and lightheadness have gotten worse and do not go away at all. i wake up with it, it gets worse as the day goes on. night time being the worst.

i don't trust myself to drive my babies anywhere other then my town. i feel weird. it's hard to explain it to people who don't have the problem. this is where i think my family doesn't believe me or that it is all in my head.

so finally after almost two months of not being able to deal with it, in september i went to my local cardiologist. he said there is nothing wrong with me. and gave no answer for being lightheaded. he told me to see my primary care doctor.

so i went to see my primary care doctor.
she ran all possible blood work and it came out normal. she didn't have any answers for me except to go see an Ear Nose Throat doctor and a Neurologist.

so i saw the ENT first. he did a hearing test among other tests at first he said it could be meineres but then after my results he said no i dont believe it's your ear, see the neurologist. but he called me a week later to see if i had been to the neurologist yet and told me if they don't find anything to come back and see him.

so then i went to the neurologist. she did an mri, hearing test, dizzy battery test and everything once again came out fine. at first she thought i could be having vestibular migraines. but after my results she said nothing was found that could be causing this problem.

so i decided to go downtown to my cardiologist there. and this is what my most recent posts have been about. (she did the echo, holter monitor) so as you know she said the pac's were benign, more of a nuisance and wouldn't be causing my lightheadedness. she saw my echo results but wanted to see the physical cd so i am still waiting to hear back to her from the echo CD copy i sent her earlier in the week.

nobody has answers. nobody seems to understand. my family probably thinks i am just complaining or trying to find something wrong. i just want an answer or solution. it's driving me crazy. i have 1 million things i would love to do today but can't leave the house with my kids for too long. it is really hindering my life here. i feel like if someone told me i would be like this the rest of my life i would go crazy. it's not a nice way to live, since i am not 100% all there. it's like a fog. sometimes i feel like i am watching a movie of myself. weird way to explain it i know.

so are you truly dizzy, (room spinning) or are you lightheaded? this makes a difference to the doctors i have learned. like i dont feel like i am spinning around, i just feel like i am floating around and that my head is not connected to my body. my vision is different and like i said this all makes it difficult to drive. i feel off balance.

also about 7 times now, i have gotten sudden vision problems for about 1 minute. it's always in my left eye and its like my eyes are crossing or something strange. this is what scares me the most. thank god it has not happened while i am driving. one of the doctors thought it could be TIA's. so of course i read about those, and it says you are more likely to have a full blown stroke within 90 days of having a TIA. great. but once again, they showed no concern or gave me anything to help with those.

so i am truly with you on this. you are not alone and it's making my life miserable. everyone said i would feel better after this surgery. funny thing is, i felt fine before my surgery, i only got the surgery because of my aneurysm which didn't produce any symptoms. i feel like i ruined my life by getting the surgery. i know this is a negative way to look at the surgery when so many have had their lives saved by it. but for me, it's taken me backwards.
Click to expand...

Malibu -

This is a well written explanation of the impact this issue is having on your life.
You might want to print it out and show it to your Doctors the next time you see each of them
so that they can understand the impact it is having on your life.

I hope that one of them will be able to help you resolve this issue.

'AL Capshaw'
 
I think it's more lightheadedness though I do occasionally have vertigo and non-vertigo dizziness. When I have this "lightheadedness" it feels like I'm going to fall over. Last night in the restaurant I almost fell to my right then my left. This morning as I was taking my pills I felt like I was going to fall backwards. I guess I feel like I'm on a boat, but I also feel like my eyes are funny but I can't explain how. I had an eye exam Wednesday and they were extremely thorough and I have perfect eyes and perfect vision.

It has happened sitting in crowded areas, walking in places that are too dim, too bright or with florescent lights, it happens when in driving in the day but not in the dark, and walking in crowds. Because I'm sensitive to motion and light I am thinking it may be migraine related, I do get auras all the time and have many people in my family with debilitating migraines. I just don't know if that is truly the case though because I wasn't like this before surgery. I'd only get dizzy at times that I should have been dizzy.

It also can't be from my arrythmias because it happens whether I'm having an arrythmia or not. Though spinning only happens when I'm having tons of PVCs.

It is debilitating. I worry about going in places with flourscent lights which is very difficult. I also don't like going anywhere there is too much commotion. I am almost terrified to drive an thus stopped going to rehab so this is effecting my recovery.
 
thanks al , that is a good idea!

michelle...sometimes i wonder if the surgery "brought out" certain problems that i may have had before but didn't notice?
 
malibu82 said:
thanks al , that is a good idea!

michelle...sometimes i wonder if the surgery "brought out" certain problems that i may have had before but didn't notice?
Click to expand...

Malibu, I was wonderring what meds you are on and if you looked to see what side effects you might get. The reason I'm asking was when I read this paragraph

" felt great for 2 months after surgery. no pac's or anything. i was on the road to getting back to 100%. then in late july/august, i started to notice i was getting what i thought was dizzy. i kept called it dizzy but i have now learned its not really dizzy, it is lightheaded. i don't feel as the the room is spinning, i just feel not 100% there, i feel like i could faint at anytime and i am off balance and driving is difficult. it was also around this time that i started to notice SLIGHT pac's. now obviously the pac's and lightheadness have gotten worse and do not go away at all. i wake up with it, it gets worse as the day goes on. night time being the worst."

It reminded me exactly how I felt years ago when I was on Prednisone and some other meds for very bad asthma. I remember getting frustrated I couldn't describe how I felt like I wasn't "part" of my family when we went up for the Holidays, I felt more like a person sitting off in the distance fog watching everyone, even when I was sitting at the table or living room in the middle of everyone.. anyway, when I was finally able to stop high doses of a few meds, everything was back to normal. I pretty much forgot about it then one day after my Mom was daignosed with COPD and was taking a few different meds, she called me up to tell me, she never really understood what I was trying to explain (nearly a decade earlier) when I was on the meds and didn't feel part of things, but she started feeling that way and suddenly remeberred my experience and so she called her doctor and got meds switched around, but mainly she just called me to say she finally realized what I was going thru and could see why I was getting so frustrated trying to explain it to everyone and no one understanding what I was trying to describe.
Justin was a toddler at the time so I can remember how afraid I was to be with him alone or drive ect.
 
I started getting dizzy spells about 6 months out of surgery.I went to see my GP and he said all was well.But, he recommended I take an over the counter motion sickness pill. So the next few times I felt like that I took one and it helped alot.After several months they stopped altogether.
 
hi lyn!

i wish this could be the magic answer, but i am only on a baby dose of aspirin daily :(

i do feel the same way you described. (not being "part" of the family etc) that's neat that your mom was able to remember your experience and fix her problem as well as understand where you were coming from at the time it was happening to you!
thanks for sharing :)
 
I might suggest attempting to get a measurement of your blood pressure and heart rate during an episode. It may happen too fast to get a bp, but that could give some insight as to the cause.

Another option could be a holter monitor to see if it's an arrhythmia.
 
Michelle D said:
I'm glad to hear I'm not alone, though not glad that others had to be frustrated with this as well. Sometimes I think it's migraine related because I also get aura frequently on my very dizzy days. But I don't want to self diagnose. It's just aggravating that no doctors can tell me anything but it is severely intrusive. I'm to anxious about driving because of the dizziness, and I won't go for walks by myself. If they can't diagnose me that's fine but I think they just don't take it very seriously. I think I will go to an ear nose throat doctor and if I get nothing out of that I'll go to a neurologist.
Click to expand...

Hi Michelle,
I think it's worth going to a neurologist. I have a BAV and am on nine-monthly visits to cardio, waiting for him to say surgery-time is here. I also have left temporal lobe epilepsy, which was diagnosed in 2004 (so classified as adult onset) but I feel I've probably had it for a lot longer as I remember weird 'auras' and sensations from my teens. I'm on medication and have only ever had one grand mal seizure (where you fall and convulse - nice). Others are absences where I zone out and don't feel right. Somtimes dizzy, sometimes can't articulate what I want to say, sometimes I just KNOW I'm having one but can't explain it. Sometimes it's even pleasant. My neurologist thinks I may have had a slight clot that lodged in my brain during my childhood surgery in the 1970s, which has left a slight scar (i.e. indent that showed on MRI) and led to this condition by interfering with electrical impulses. It's a BUMMER but what can you do? It's well managed and there are worse things in the world.
I hope you get yours sorted out. It is probably just post-surgery dizziness or medication related as the others said. But I think you'd feel better if you saw a neurologist. They can ease your mind about lots of things. It's really annoying - you've done what had to be done and things should be good. I'd be really annoyed and frustrated too. Good luck
 
malibu82 said:
hi there

my vision is different and like i said this all makes it difficult to drive. i feel off balance.

also about 7 times now, i have gotten sudden vision problems for about 1 minute. it's always in my left eye and its like my eyes are crossing or something strange. this is what scares me the most. thank god it has not happened while i am driving.

so i am truly with you on this. you are not alone and it's making my life miserable. everyone said i would feel better after this surgery. funny thing is, i felt fine before my surgery, i only got the surgery because of my aneurysm which didn't produce any symptoms. i feel like i ruined my life by getting the surgery. i know this is a negative way to look at the surgery when so many have had their lives saved by it. but for me, it's taken me backwards.
Click to expand...

Michelle and Malibu,

I feel for the both of you. It must be very frustrating to be dealing with all this. I can tell you that you are not alone in that I too experienced about 7 episodes of lightheadedness and visual disturbance approximately 4-8 months post op (also in my left eye exactly like you described it Malibu!) since my surgery last year. It was very scary. Only once did it happen while I was driving and I actually pulled over. Although these episodes only lasted about 10-30 seconds, it felt much longer. I did speak to a cardiac nurse about this and she did say that it could be a result of a blood pressure drop. It is the 'visual disturbance' like feeling cross eyed that is worrisome and not knowing when it will happen.

I can tell you that it has only happened once to me over the past several months (decrease in frequency) 'touch wood'. So hopefully 'this too shall pass' for you both as well. (It is not medication related for me as I am on no meds. )

I do have a follow-up appt. next month at the cardiac clinic and will ask about this. If I get any explanations I will be sure to let you know.

Take care,
Thinking of you,
 
Last edited:
Dizzy?

Dizzy?

I had problems with getting dizzy after being hit by a vehicle back in June 2009. The condition was related to head trauma getting things in my inner ear stirred-up. My problem had nothing to do with any heart problems. If your regular doctor or cardiologist can't figure-out what's going on, a trip to a neurologist wouldn't be a bad idea.

-Philip
 
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