Dizziness that cannot be fixed

[babymonkey]

After almost 2 years of severe life altering dizziness and test after test, it has been determined through MRI that the dizziness I have is caused by a lesion.
I am dizzy 100% of every waking minute of every day and night. I can no longer drive and I feel so bad because I am not able to take my little girl anywhere!
The dizziness is so bad and I hate it!
I am praying that the Cytoxin is going to shrink that lesion and make it better, but so far its only worse.
Anyone else have this? I was 'relabeled' SPMS in 2012 after RRMS DX in 1998.

[marti]

My neuro tells me that my particular dizziness or lightheadedness is Vestibular and there is little they can do. Mine is not as severe as yours. It comes and goes. But I've had this for years. It's a terrible feeling.

Hope you find some relief.

[mjan]

I am so sorry for what you are going through. I have had bouts of dizziness now mostly when moving my eyes.

BUT.. I was offered Vestibular therapy and whalla.. it really helped first my balance and now my dizziness is milder and not as frequent.

Ask for that therapy. They will evaluate you, do exercizes that train the brain, inner ear and bottom of feet to start to communicate better. It helped me. You do have to be faithful to the exercizes through, which are simple.

Good luck, hope you get relief and soon!!

Jan

[loopey]

I have been "dizzy" every day for two and a half years now. It is my worst symptom. I have a hard time describing it because it is mostly when I move my head or eyes and I lose my balance. I also can't drive and would not wish this on anyone. I truly empathize with you.

[KatieAgain]

Yes, I have a lesion that causes the dizziness. It was my presenting symptom. I walked into a doctors office with dizziness and out with MS.

There are TWO types of dizziness: 1. Peripheral (vestibular, caused by the inner ear. This is the most common and usually treated with vestibular therapy exercises. This type of dizziness can be founded in people with or without MS. 2. Central Nervous System (CNS) dizziness, which is found in primarily persons with MS and is due to a lesion. This can only be controlled by medication...or if you are lucky to get the lesion to shrink.

Benzodiazpines have been found to effectively manage CNS dizziness. Earlier, Neuros were trying to manage CNS dizziness with anti-seizures drugs, but this has not been effective. I take Valium, every day, 5 mgs in the morning first thing and another 5 mgs as needed. I will warn you in advance, any of the Benzos are controlled substances. You should not drink alcohol at all with them.

Talk to you neuro about it. I was started on a much higher dosage initially and weaned down to the current maintenance dosage to remain stable. It is a difficult symptom to get under control and manage. But once you do, and you figure it all out...life goes on as normal.

If you get CNS Vertigo...which is different than the dizziness...you just sort of have to wait it out or go on IV steroids. Meclazine does provide a little relief, but not much.

For anyone reading this post and has the dizziness, it is very important to get your neuro and an ENT to determine which type of dizziness it is. One is much more serious than the other and the treatment is completely different.

Hope this helps.

[babymonkey]

Thank you all for your replies, advice, and kind words.
I guess I had an MS brain moment and did not mention that I have had many test by many specialist. Unfortunatley, vestibular exercises will not help me.
My neuro decided that Valium was my only hope. They have me on 10mg 2 to 3 times a day. It seems to help just a little but not enough to make a difference in how it affects my daily life.
Sorry to have left out that important info.

[KatieAgain]

I thought about this last night, because of every symptom I have had in the past to include paralysis and ON...CNS dizziness and vertigo are the worst. I have it darling and believe me I understand. Cyclist22 has it too, and she is a Nurse so I hope she comes on to offer her opinion. It can housebound you in a heartbeat. And it does not last for a day or two...it lasts forever. Which can affect your quality of life. So you must get this under control and don't let your Neuro shrug his shoulders.

I went 9 months without treatment. And that little lesion was angry when they found it. Location, location, location! They put me on the same amount of Valium as you, but gave me 6 tablets of 5mgs to take one every three to four hours. That way a constant dosage was being supplied to my body. I received immediate relief, but for a short time with the first pill and it took several months before the full effect was reached...so you have to keep at it. Once you reach "Nirvana" then you can be slowly weaned back. I am currently on two 5mgs tablets a day. I cut those in half when things are bad to keep a more steady stream of the med in my body. If I have a flare, we pretty much have to start over.

Additionally, there are triggers, that are sensory that absolutely drive me nuts. Flourescent lights are a big one...WalMart Sucks, and hello Valium! Sometimes scented objects such as candles can set me off...even scented dryer sheets.

Look at all you other meds. Are they possibly contributing? For example, I just had to go back on interferon and once we go past a certain dosage, I get dizzy. That happened last week, so we cut back on the dosage and I am still trying to stabilize the dizziness. Needless to say the pill cutter is getting used.

Just keep on it. Do not let your neuro stop. Maybe a short stay in the hospital with IV Steroids and IV Valium are needed.

Good Luck...I will keep you in my thoughts.

[22cyclist]

Wow! You guys have done such a great job of covering this I don't really have much to contribute. The lesions are usually in the brainstem or in the cerebellum. Mine are in the brainstem and make my eyes not work together, something called INO. Even though this is self limiting, my eyes permanently do not work together anymore and my dizziness is not helped by that, but the lesion itself causes the "CNS vertigo".

KatieAgain gives a good synopsis of the difference between CNS and PNS (Ear) dizziness. An ENT can tell the difference by looking in your eyes with a pair of Frenzel Glasses that gives the doctor the ability to tell if nystagmus is peripheral in nature or central in nature. In turn this allows them to tell if your dizziness is central or peripheral in nature. This will tell them if the maneuvers will help you or not. If it is central, they will not.

She also gives a good synopsis about meds. There are not many for CNS dizziness. Valium is the drug of choice because it works so well for CNS dizziness. Meclizine works best on PNS dizziness. It can be confusing and your neurologist may not always know which it is. The best thing to ask for is to get an ENT appointment to sort out PNS from CNS so you can get the right treatment. You don't want to start maneuvers if you have CNS dizziness...it will only make you sick.

People with MS can certainly have PNS dizziness (menieres disease, BPPV etc.), but lots of people with MS do have pure CNS dizziness and should be treated for that.

Lisa
Moderation Team

[marti]

My neuro tells me that my particular dizziness or lightheadedness is Vestibular and there is little they can do. Mine is not as severe as yours. It comes and goes. But I've had this for years. It's a terrible feeling.

Hope you find some relief.

Excuse me. In reading back over some posts I realized I made a mistake on my answer. My dizziness is NOT Vestibular. I was tested thoroughly for that. Sorry... I hope my mistake didn't lead anyone in the wrong direction.