Dizziness

[KatieAgain]

Is it possible to add a dizziness/vertigo forum? I am the "Queen of Dizziness". It was my presenting symptom and have learned a lot about it over the last several years. It seems a lot of the MSers are having a problem with dizziness.

Thanks

[Cat Mom]

Kate, would you mind sharing some of your insight on this? I just assume its due to having one blind eye and one that sees perfectly but it's dim (in the right light I can read the eye chart to the bottom line, in 48 years have never worn glasses).

Any info you have would be greatly appreciated.

Jen

[KatieAgain]

Kate, would you mind sharing some of your insight on this? I just assume its due to having one blind eye and one that sees perfectly but it's dim (in the right light I can read the eye chart to the bottom line, in 48 years have never worn glasses).

Any info you have would be greatly appreciated.

Jen

LOL! I was actually trying to get a forum for dizziness so that I would never have to talk about it again. : I'm serious...I think I have written some manifestos about dizziness.

Dizziness is very common and misunderstood by many MSers and General Neuros.

I will post later Katie's Manifesto on Dizziness one more time for you Jen! But it will have to be tomorrow because I have an appointment. Hopefully it can give you some insight.

[Sicilian650]

Yes please do.. I am dizzy every day!!!

[KatieAgain]

DIZZINESS IN KATIEVILLE (Katie's very last post on dizziness)

Dizziness and Vertigo are common symptoms in people with MS. These symptoms can be debilitating. It can cause a person to be housebound.

There are two types of dizziness: Peripheral (vestibular caused by the inner ear) and Central Nervous System ( also known as CNS Dizziness).

The most common cause of Dizziness and Vertigo is not even related to MS at all and that is Peripheral Dizziness. This is usually caused by little stones the size of sand rolling around in the inner ear also commonly called BPPV. This type of dizziness is normally very treatable through a process called Vestibular Therapy which can be performed by a physical therapist. Additionally there is a maneuver called The Epley Manuver which can be found on YouTube. However, I would make sure you are properly trained by your doctor before attempting the maneuver itself to ensure you are doing it correctly and thus getting the most benefit. Exercises provided by a PT Therapist must usually be performed daily.

Another type of Dizziness and Vertigo is CNS Dizziness and this is not vestibular, this type of Dizziness is caused by specific lesions on the brain, brain stem and cervical cord. I call these three lesions Malibu, Palm Springs and Beverly Hills. My Malibu and Palm Springs were nuked! So far Beverly Hills remains untouched. Therefore CNS Dizziness can be directly caused by MS. CNS Dizziness can not normally be treated with Vestibular Therapy Exercises and The Epley Maneuver will have absolutely no effect. Normally, the only treatment for CNS Dizziness is a drug in the Benzo Class such as Valium and older type of drug therapy that use to be used was any of the anti-seizure drugs. Additionally, drugs such as Zofran are helpful if nausea is present.

Like most other MS Symptoms CNS Dizziness can remit or it can be permanent. IV Steroids have been found to be helpful during major flares if Vertigo is present and out of control.

How does an MSer find out which kind they have? Well most MSers have the peripheral kind, which is the most treatable. Even without MS the majority of people will experience peripheral dizziness at least once in their life. It is important for an MSer to talk to their Neuro. A lot of General Neuros do not even consider dizziness as a MS Symptom. They are looking at things like tingling, pins and needles and optic neuritis. A MS Specialist should quickly zoom in on the possibility that MS could be the cause.

A trip to the ENT is usually the first step to rule out any inner ear problem. It is also a good idea for a patient to try Vestibular Therapy no matter what, just to see if it helps. If not, the patient is referred back to the Neuro who will match lesions to the symptoms and prescribe the appropriate medication.

It is important to note that if you are prescribed medication, it is a very low dose and it will take a few weeks for your body to get use to it. Under no circumstances should you drink alcohol.

Any one who suffers from either type of dizziness would benefit from a good diet and exercise as tolerated.

Well..that is about it. I have CNS dizziness. It was my presenting symptom and the reason I was initially diagnosed with MS. Originally, they thought I had an inner ear problem...nope it was MS...and it went down from there. Optic Neuritis, when I have it makes my CNS Dizziness worse...I was told it puts the brain in overdrive. In my personal experience when you mix Optic Neuritis with CNS Dizziness it makes for one very maddening, emotional roller coaster ride.

All the information in this "manifesto" has been gathered over the years from my own research on the matter and several MS Specialists and two ENTs advice to me. I am not a Medical Doctor...I am simply one of the 500,000 people in the US that have MS...and wants some definitive answers.

Dizziness and treatments are different for everyone and should be discussed with your doctor. What is the correct treatment for me, is not necessarily the correct treatment for anyone else. Hope you found this helpful and good luck in treating whatever type of dizziness you have.

[Cat Mom]

I will post later Katie's Manifesto on Dizziness one more time for you Jen! But it will have to be tomorrow because I have an appointment. Hopefully it can give you some insight.

Looking forward to reading your Manifesto! Love the name!

[KatieAgain]

Looking forward to reading your Manifesto! Love the name!

Hey Jen--I posted it. Apparently I was up an hour earlier than you today!

BTW...I have heard that approximately 20% of MSers suffer chronic dizziness. I can tell you if my Beverly Hills ever gets hit (you have to read my post above), anyway...if my Beverly Hills ever gets hit, I live in the Lightening Capital, I am going to wrap my body in aluminum foil and stand out in my back yard during a Tropical Storm or Hurricane!

[Sicilian650]

Wow... That's great to know.. You should write a book!!!

[Cat Mom]

Wow! Very informative... I hope your Beverly Hills remains intact! After reading your Manifesto, I definitely know my dizziness is only vision related, not one of the serious kinds you mention. Motion sickness tablets usually work although make me sleepy.

Thanks for sharing! As usual, you've used a "light" tone to present a serious topic, so thanks for that too.

Jen

[newbie but goodie]

Thanks for this Katie! Dizziness is a newish Sx for me. Glad to get some details so I can approach the doctor with a little focus. I hate going in with my laundry list of hard-to-describe issues every time.

[Temagami]

Got out the sea bands today- works via an acupressure point on your lower arm. The dizziness has decreased though my balance is still iffy at times. So, worth a try.

[poohb3ar]

great idea!

Got out the sea bands today- works via an acupressure point on your lower arm. The dizziness has decreased though my balance is still iffy at times. So, worth a try.

thanks for the idea! never thought to use those except on the cruise ship.
i have the neuro damage dizziness so have been on meds for 11 yrs that usually keep it calm. but am having rough seas now.
gotta go find those wristbands, maybe i can ride out the storm without steroids!!!
thanks!
take care & God bless ya!

[Picture me]

Drastic measures!

I had chronic dizziness for 2 years. It got to the point I walked like I was drunk all the time. I was also very nauseated. They said I had profound damage to my left vestibular nerve. I had a very serious surgery where they severed the nerve entirely. It was done intercranially. They actually took a piece of my scull out to operate. Unfortunately they couldn't put it back due to swelling of my brain so now my dizziness is cured but I have a big dent behind my ear where my scull used to be and I rely on my right nerve for balance . A long road back and lots of headaches-literally ! Was it worth it? For me I guess it was because I tried every drug first but nothing worked. If it ever gets as bad as mine did there is always surgery. Last resort only!

[MsOreb]

omg, is I'm worried this dizziness is never going away, it is so exhausting.
It's not a spinning feeling exactly, just a general like I am floating type feeeling.

[pitlover91]

New member here! I've been experiencing dizziness/lightheadedness for 3 years now. These symptoms led to my ms diagnosis but I'm still unsure if its CNS related or not. I've done vestibular therapy that didn't help. Actually felt worse for a while during that time. Meclizine rarely helped and sometimes it would make me worse. The dizziness usually always happens in the morning and then I just get constant episodes of lightheadedness. I've even done a 5 day steroid infusion and felt worse(prob because of the meds) then felt pretty good for like 4 days then went right back to how I was before. Don't know what to do now! Have you guys ever heard of scalp acupuncture? According to the stuff I read online it helps relieve symptoms.