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Old 06-07-2019, 03:46 AM
 
6,080 posts, read 2,801,967 times
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I suffer from:
Meniere's disease is an inner ear disease that typically affects one ear. This disease can cause pressure or pain in the ear, severe cases of dizziness or vertigo, hearing loss and a ringing or roaring noise, also known as tinnitus.

I do not get ear aches of any sorts. I Get the Knockme down and swirl me around ad nauseaum effect.
It started in my late 30's. Has sporadically re-entered my life with no Trigger to be found.

There is no cure and any mecclazine or typical Vertigo meds has done nada for it. I endure it to its fullest extent. Sometimes its with nausea or migraines just to liven it up! I refuse to drive during such times so thank goodness for uber or some private driving services.

My Doctors did the whole gamut of test from It could be a tumor ( yeah doc wtg on going that avenue!) to Gee maybe its just that time of the month- (Basically dismissing the severity of it).
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Old 06-07-2019, 07:26 AM
 
Location: Southern California native, last 20 yrs in Milwaukee Wisc.
1,205 posts, read 3,405,791 times
Reputation: 1796
" I try my best not to take prescription meds & go as all natural as possible. If I could afford a holistic dr, I'd see one."


Well, those are excellent ways to get no relief, unless you are prone to the placebo effect. Prescription drugs and real doctors have an infinitely better chance of doing something for you.
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Old 06-07-2019, 08:07 AM
 
3,867 posts, read 2,717,961 times
Reputation: 7111
Quote:
Originally Posted by Forever Blue View Post
I'm now 44. Been getting off & on dizziness since May 2017 for no reason that I can tell. I don't even really get headaches. Not sure if "dizziness" is the right word. It's hard to explain. Been seeing a neurologist since Oct 2018.
What do you mean, you're not sure dizziness is the right word? Most people clearly understand what dizziness is.

I was dizzy from anemia, low iron, from excessive female bleeding issues. Are you getting enough iron?
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Old 06-07-2019, 08:28 AM
 
6,042 posts, read 3,377,641 times
Reputation: 5440
Quote:
Originally Posted by wit-nit View Post
OP we've been dealing with MS in our family for over 70 years. I suggest you find a new doctor, specifically one that specializes in MS. Your story doesn't add up symptom wise or even the correct medicine.
Google MS, it's symptoms, diagnosis, treatments and how do I know if I have MS. Mayo Clinic is one of the top MS institutes.

Here is a good informational read on MS. https://www.emedicinehealth.com/myel...article_em.htm
My mother has MS (secondary progressive) and I know others with the disease as well. I concur that what has been presented doesn’t sound like MS.

While OP doesn’t want to take an MRI with contrast the “gold standard” to diagnose brain lesions and MS is exactly that....

And how can a non-contrast MRI cause problems? Aside from anxiety due to claustrophobia the only issue is when you have implanted metals.
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Old 06-07-2019, 11:42 AM
 
Location: Southern California
23,244 posts, read 8,065,291 times
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Quote:
Originally Posted by mrkool View Post
" I try my best not to take prescription meds & go as all natural as possible. If I could afford a holistic dr, I'd see one."


Well, those are excellent ways to get no relief, unless you are prone to the placebo effect. Prescription drugs and real doctors have an infinitely better chance of doing something for you.
We'll disagree here, my sister lost the battle with MS a few yrs ago due to what I believe were excessive toxic drugs from the doctors who knew best. Kept telling her, it would slow down the progression, they did not.

I agree about NOT taking a lot of prescription drugs. I brought her some alt meds that others were taking for MS and her specialists poo poo'd them....she is gone.

OP: I don't recall my sister ever talking about being dizzy, but I also believe sugars/carbs don't help MS. My sister liked them too much.

Dizzy issues can be lower blood pressure and I know some who have that issue.

Last edited by jaminhealth; 06-07-2019 at 12:03 PM..
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Old 06-07-2019, 06:22 PM
 
Location: Southern California
5,411 posts, read 8,109,753 times
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Thanks so very much everyone for taking the time to post! I pray to God that He gets to the bottom of this ASAP. I actually like this (female) NP (nurse practitioner) that I saw for the 1st time earlier this week. Again, I like her better than the (male) neurologist I had been seeing. I have my next appt w/ the NP on August 2nd.

I need to try to pay more attention to see if what I'm eating affects how I feel. So far, it's looking like flour products (breads, etc.) don't help, but I try my best to stay away from that anyway.

I never had low blood pressure. My BP was always good my entire life, but it's been a little high I'd say in the last year sometimes.

I've always taken vitamins my entire life, but not as consistently as I have the last 4-5 yrs, I'd say. I take a good several of high quality:

- multi-vitamin
- Vitamin D
- selenium
- probiotic

& a few more PLUS others maybe about 1-2 times a week.

I do seem to kind of feel better when I'm outdoors, so I try to not be cooped up in the house too much. I try to get out every other day & when I'm home, I try to have windows open & ceiling fans on if it's not cold.

Quote:
Originally Posted by SouthernBelleInUtah View Post
A friend had odd blindness/vision spots for some years before she woke up blind on one side. Turned out to be MS. Do you have any vision problems?
No vision problems, funny spots, blurriness, temporary times of not being able to see, etc.

Quote:
Originally Posted by bpollen View Post
I had severe dizziness in several incidents during a 4 year period some years ago. I was in my 50s. I am sure I had BPPV...where the crystals in the inner ear get out.

How severe is your dizziness? How long does it last? Can you drive, stand up, go to work?

My symptoms were severe. It would hit suddenly. The first time I was asleep; it woke me up about 3 a.m....with intense vertigo. It was debilitating vertigo. As if I were drunk and the room was spinning around. No equilibrium. I couldn't stand w/o holding onto something. Couldn't walk. Couldn't drive. Couldn't look up. After an incident started, the vertigo was constant for some period of time until it culminated in my throwing up. I would still be very dizzy, but the vertigo wasn't as much, and I would be weak, still without good equilibrium (but better than before). I would have to take to my bed for an entire day or two and try not to move because every movement of my head made it worse.

I went to an urgent care place after the first one, after several days (when I could drive). He couldn't find an ear infection. He's the one who told me it MIGHT be BPPV, which I'd never heard of before. He prescribed pills for me, which helped a LOT. I later learned they were just dramamine which you can buy over the counter. I looked up BPPV on the internet to see what it was. I read about the Epley Maneuver positions. I figured I had BPPV when I did the Epley Maneuver, because when I did it, when I put my head in one particular position, it was like a switch turned on the extreme dizziness. But then shortly afterwards, I felt better.

I started carrying dramamine with me everywhere, in case it suddenly hit. The dramamine helped a lot.

The good news is that after that 4 year period, I never had another instance of it. It went away as mysteriously as it had appeared. I DO tend to get NORMAL slight dizziness momentarily now when standing & sitting too fast sometimes, or if I get too hot in the sun, things like that. That might be my age, or my blood pressure dropping.

My medical history at that time (and now): excellent health, not on any meds, no med conditions besides mild arthritis, no allergies that I know of. I usually got a sinus infection back then once a year (I wondered if that was allergy related, tho, because I'd get those in January, I think, when the henbit weed was growing).

I was a SMOKER when the vertigo hit that first time. I had tried to quit smoking numerous times, but nothing stuck. I quit smoking when that vertigo hit; I couldn't stand the thought of that smoke swirling in my head, and I was going to try to quit, anyway. I haven't smoked since. So I wasn't a smoker when the other incidents occurred.

I didn't see a dr. about the vertigo spells, other than that urgent care doctor. I didn't think it was necessary. I was sure it was BPPV, and the dramamine helped.

Is it normal for a doctor to do all those tests and prescribe medications for dizziness? How bad are your spells? How long do they last? Did the Epley Maneuver help? Have you tried dramamine?

Do you have any issue with low blood pressure? I don't know the symptoms of MS, but I had a co-worker who was diagnosed with MS. Her first symptom was dropping things. It was like her hand just gave out, as opposed to being clumsy like we all are sometimes.
Wow, you had it very severe. I'm so sorry. I know that wasn't a good feeling.

I'll note BPPV as a possibility that I'll bring up the next time I see the NP.

I did try Dramamine & it didn't seem to help either (like the Meclizine).

The worse dizziness ever was actually right after I did the non-contrast brain MRI & it took 2-3 mos to gradually go away. Maybe my body is sensitive to it or something. But during the MRI procedure itself, I wasn't anxious & I'm not claustrophobic...I'm not in general either. I was very calm laying down in that machine.

That's why I sure don't want to get the CONTRAST MRI. If I felt that badly w/ the NON-CONTRAST MRI, God knows how I'll feel w/ that contrast one. After my other MRI, which was the 1st time I ever took one, I told myself that I hope I never have to take another one ever due to how I felt the 2-3 mos right after it. Driving was actually a little funny, but normally, driving is no problem for me.

I can stand & do the work that I do, but I do work on the computer the ENTIRE time I work, which I don't like, but I have no choice (& I can't just get another job). I try to get up & stretch when I can.

Quote:
Originally Posted by Nov3 View Post
I suffer from:
Meniere's disease is an inner ear disease that typically affects one ear. This disease can cause pressure or pain in the ear, severe cases of dizziness or vertigo, hearing loss and a ringing or roaring noise, also known as tinnitus.

I do not get ear aches of any sorts. I Get the Knockme down and swirl me around ad nauseaum effect.
It started in my late 30's. Has sporadically re-entered my life with no Trigger to be found.

There is no cure and any mecclazine or typical Vertigo meds has done nada for it. I endure it to its fullest extent. Sometimes its with nausea or migraines just to liven it up! I refuse to drive during such times so thank goodness for uber or some private driving services.

My Doctors did the whole gamut of test from It could be a tumor ( yeah doc wtg on going that avenue!) to Gee maybe its just that time of the month- (Basically dismissing the severity of it).
No ear problems for me either. No pressurized or deafening feelings, etc. Never really as severe as nausea. I never threw up ever.

Quote:
Originally Posted by KaraG View Post
What do you mean, you're not sure dizziness is the right word? Most people clearly understand what dizziness is.

I was dizzy from anemia, low iron, from excessive female bleeding issues. Are you getting enough iron?
What I mean is that yes, I know what dizziness is, but this is a kind of different feeling I'd say that's hard to explain & I don't know what word or term would actually describe it. So dizziness is maybe the closest word I can say to verbalize it. It's not nausea. When I said this to the NP the other day, she asked if it's like the rocking of being on a boat & I said, maybe so.

Quote:
Originally Posted by markjames68 View Post
My mother has MS (secondary progressive) and I know others with the disease as well. I concur that what has been presented doesn’t sound like MS.

While OP doesn’t want to take an MRI with contrast the “gold standard” to diagnose brain lesions and MS is exactly that....

And how can a non-contrast MRI cause problems? Aside from anxiety due to claustrophobia the only issue is when you have implanted metals.
Read above what I said about the MRI I took & how it made me feel.

The part of your comment I bolded, I don't honestly think it's MS either. I surely hope not.

Quote:
Originally Posted by jaminhealth View Post
We'll disagree here, my sister lost the battle with MS a few yrs ago due to what I believe were excessive toxic drugs from the doctors who knew best. Kept telling her, it would slow down the progression, they did not.

I agree about NOT taking a lot of prescription drugs. I brought her some alt meds that others were taking for MS and her specialists poo poo'd them....she is gone.

OP: I don't recall my sister ever talking about being dizzy, but I also believe sugars/carbs don't help MS. My sister liked them too much.

Dizzy issues can be lower blood pressure and I know some who have that issue.
I'm sorry for your loss. Yes, glad you understand my feelings about wanting to go as all-natural as possible.

However, I know that if I ever was able to see a holistic dr that just like w/ a regular dr, it's important to find the RIGHT holistic dr. Many holistic ones may want to tell a person to take this & that just to make their money. Just like regular drs want to prescribe this & that too.

My mother always taught me that whatever meds/prescriptions I'm prescribed to do my research on it first...see what the side effects are.
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Old 06-07-2019, 10:28 PM
 
Location: Midwest
4,219 posts, read 7,115,680 times
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Get a second opinion. Sounds like your doc is fishing because he has no clue.
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Old 06-08-2019, 08:18 AM
 
3,759 posts, read 3,485,356 times
Reputation: 8926
Get tested for Lyme disease. Probably will be negative, since Lyme has other characteristic symptoms that you have not mentioned, but it can affect people in different ways. But better safe than sorry.

Also check for other kinds of auto-immune conditions, which can cause blood pressure and dizziness symptoms.
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Old 06-08-2019, 09:38 AM
 
Location: Middle of the ocean
31,359 posts, read 19,773,299 times
Reputation: 45194
Could be inner ear related?

I am going in for an MRI for possible MS (occasional weakness in left arm/leg worse when exposed to heat).

The first step is MRI with and without contrast which will be done at the same time, of brain and spine.

I am under the impression that this is will confirm or deny the possibility of MS.

Best of luck to you, it must be very frustrating.
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Old 06-08-2019, 04:04 PM
 
3,871 posts, read 1,650,116 times
Reputation: 7881
Quote:
Originally Posted by Mikala43 View Post
Could be inner ear related?

I am going in for an MRI for possible MS (occasional weakness in left arm/leg worse when exposed to heat).

The first step is MRI with and without contrast which will be done at the same time, of brain and spine.

I am under the impression that this is will confirm or deny the possibility of MS.

Best of luck to you, it must be very frustrating.
BPPV has to do with crystals in the inner ear, and that is very common. Usually people with that get vestibular training. Not all people find relief with meclizine or Dramamine.

It sounds like the OP already got the noncontrast MRI- not sure why they are wanting a contrast version. I had one friend who had BPPV and after she became anxious, her BPPV really flared up. For some, it seems to have some connection to anxiety, so it is quite possible that the MRI without contrast could have triggered it in the OP because the MRI was anxiety inducing for her. I am perplexed about the contrast and agree that it is likely just to bring on more symptoms for her if she had a really bad experience the first time.
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