Dizziness

[KatieAgain]

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.

I read your other thread in the meds forum and responded to it. What you are describing sounds indeed like CNS Dizziness. There are meds for that. So the only way to find out at this point is try the med and see if it stops.

CNS Dizziness is maddening.

[AriD]

I've never heard of scalp acupuncture. I have had some severe episodes of vertigo nystagmus and vomiting. It's the worst! I agree with you Katie. I dread when I have any little bit of room spinning that it's coming back. I had an ENG which confirmed central vs peripheral vertigo. Most days I had these fleeting feelings of lightheadedness with a weird sensation that I'm falling over. I have to grab on to something quickly to keep myself from losing my balance. I find if I'm just touching something (a wall, table,etc) I'm better. If I stand without even lightly touching something it's only a matter of several seconds before I'm tipping over. Anyone have that sensation?

[shalimar]

My first ms symptom. Lasted for 3 months and went away. Had no idea it was from ms. Next symptom was 12 years later at the start of menopause which was tingling in my hands and feet. Took almost a tear of testing to get a positive diagnosis.

[KatieAgain]

My first ms symptom. Lasted for 3 months and went away. Had no idea it was from ms. Next symptom was 12 years later at the start of menopause which was tingling in my hands and feet. Took almost a tear of testing to get a positive diagnosis.

My first symptom too, but I got a quick diagnosis.

AriD - Are you taking any meds for that CNS dizziness?

[AriD]

Hi Katie
My severe episodes of vertigo come with nystagmus and vomiting and are the worst. Can't walk and the room just spins out of control. My last bad episode was treated with IV Valium then po Valium then meclizine which I went home on a tapering dose. The brief episodes I get several times a day I just put up with (like so many MS symptoms) but if they last too long or are more severe then I take meclizine. The meclizine makes me feel a little weird but not as bad as the dizzy falling feeling I get. Have you found anything that has helped you. I have done some vestibular and balance training with PT that has helped some.

[22cyclist]

AriD: I have had central vertigo for what seems like forever now. It is due to a brainstem lesion. I take Valium as needed for dizziness and nausea/vomiting. I also have Compazine for the nausea. My neuro said that about the only thing that can really treat CNS dizziness is Valium. It helps me, I take 5-10 mg depending on how bad the episode is.

I wish you luck, I know how horrible this is, but there is hope, I manage it everyday. It can be dealt with.

Take care, hope you feel better friend,
Lisa

[AriD]

22cyclist

I have a pontine lesion causing mine. Valium was great in the hospital but it made me very sleepy. I don't think I would be able to drive or work if I took it regularly. I try to use the medication with the least side effects that helps keep the symptoms better controlled. How does Valium affect you. Can you get things done taking it?

[coloss314]

I've had dizziness since Oct. last year, at least a few times a week, sometimes lasting less than an hour, sometimes lasting most of the day. It's really difficult to work when that happens. I just want to lie down. I don't want to take any medications for it, though, so it's just something I live with.

[rghoyle]

sea legs consistent dizziness

Been having this dizzy/ fuzzy/waving feeling since memorial day. MS is doc put me on 21 day prednisone taper starting at 10 10mg pills for 3 days. Its gotten worse now. I can barely function without the feeling of passing out. I know prednisone has dizziness as a common side effect.. nice.. but should I be feeling this bad? I have 8 more days of taper. Down to 3 pills a day. Went to immediate care today to check blood pressure. All ok there.

[Mamabug]

I think prednisone was a good idea. Is your doc aware that you are not improving? Not improving is somewhat normal, even 3-4 weeks following beginning prednisone, for me.

However, if you are getting worse, I would be concerned. If you are getting worse, please let your doc know, and request a higher dose of prednisone.

When I had a similar symptom, I was put on a 5-day dose of 1000 mg prednisone, followed by a gradual taper for 3 weeks, until I was at zero mg.

~ Faith

Oh wow. Just noticed that this is a really old thread! So sorry. I think that I'll leave it here anyways, in case it still applies, or might apply to someone else.

[hojita]

I'm still in limbo, but I've been having awful bouts of fairly (probably) severe dizziness, which has me a little concerned. It's every day at random times and it just feels like the whole world moves, but it's enough to nearly knock me over. I keep walking into things and just yesterday I nearly fell down the stairs at work. If I turn my head or body, it's like my whole world is tilted. I don't know if it's CNS related or not, but I appreciate this thread because now I know that I may want to make an appointment with an ENT. My next MRI isn't until December. The dizziness just keeps getting worse :/ It only started a few weeks ago. Tonight I had pretty bad nausea (which just happens to me sometimes) and I started dry heaving at work....I have zofran but my blood pressure is already low (my baseline) and taking it just lowers it more and can make me dizzy anyways. So frustrating!!

[Mamabug]

I'm glad that I posted, hojita, even though it was an old thread, so that maybe you can get some benefit out of it.

Another really helpful thing for me, when I experienced dizziness, was physical therapy. My PT had training in vestibular therapy, and was able to help me to determine what movements triggered my dizziness, so that she could re-train my brain to bring on the dizziness, just to tolerance level, multiple times every day. In order to re-train my brain.

Dizziness that had been so bad that it had been disabling for 3 months was resolved in a week or 2. Please consider requesting a PT consult, with some with knowledge and/or experience in vestibular therapy, from your physician.

~ Faith

[kathryn]

Dizziness

It's the symptom I hate the most . Tired of feeling drunk and don't been drink. On of my lesions in on my cerebellum so know what's the culprit . Small dose of ativan usually works but some days are a loss. It's such a downer to have a decent day and then wham back in dizzy land. Any one have tips?

[kathryn]

Thanks for sharing

Thank you for posting your stories. There is comfort in knowing one isn't crazy in all this. This disease really interferes with living life. You can have a decent dyne then wham. Can live with foot drop and numb weak left arm but the dizzies do me in.

[aisunnen]

Katie's is just as good

The just issued Harvard Women's Health Watch has a good article on vertigo and dizziness. I had my first bout about a week ago, and it was pretty terrifying. But KatieAgain's manifesto pretty much gives the same information, it's just organized a little differently. They illustrate the Epley maneuver and caution that you should learn it from a professional, whether PT, OT, Dr, Neuro, because you can make it worse done improperly. And, of course, as Katie explains, there are different kinds of vertigo, some MS related, some not. Anyway, worth a look at the text and pictures if you can access them.