Hi folks, just wondering if any of you have experienced any unexplained dizziness, coming out of nowhere.

My wife has been on Xenazine now for several months, so I doubt that dizziness out of left field is a side effect. She also takes setraline, risperidone, and amantadine. I do question if she drinks enough fluids, as she appears to have dry mouth from time to time.

But having dizziness from the moment she wakes up till the moment she goes to bed is really odd. We have been to an internist doctor and an allergy doctor and her ears look fine. As for vertigo, she is taking meclazine for the dizziness and has a patch behind her ear for nausea, and neither appear to be working.

It does not matter if she is laying down or sitting up, the dizziness persists. We have to wait two weeks before our ENT doctor appointment (new patient) and I have doubts about vertigo as usually you would have worse scenario laying on one side or another, so I doubt that it is an issue of carbonate crystals in the ear canal. I tried the first step of the Epley maneuver and she didn't respond to having more dizziness, so I stopped.

Anyone have any thoughts? Thanks in advance, Ty

Tyler I send my apologizes for the problems. Vertigo has been a big problem for me. I'm assuming there is a Neurologist in the picture as well as an ENT. It's possible it could be related to the HD but I think testing will give you some of those answers. I can't tell you anymore than see a very good Neurologist specializing in movement disorders/Parkinson's/Huntington's if you haven't already. That is where I found my answer.

Mike



Edited 1 time(s). Last edit at 12/29/2014 08:07AM by mikee.

Thanks Mike. We have been seeing a neurologist, whom I spoke to on the phone two weeks ago when this started. We have not been to their office due to the holiday. Neurologist actually recommended making the apmt with an ENT specialist.

The one thing that dawned on me today, at the dentist while I was getting my teeth cleaned, is that my wife was at the dentist right before this started. She got her teeth cleaned (6 month) and they did a quick filling which required novacaine. I am thinking that perhaps laying back like that where your head might be below your body in the dentist chair... may have done something to set off vertigo, even though she didn't complain at the dentist.

Vertigo can be due to carbonate crystals in the inner ear getting shaken up or disturbed... so yes... I am grasping straws here. But still trying. The Jan. 12 apmt with ENT can't get here soon enough. Thanks and happy holidays.

Hey Ty! Just checked in since I haven't been on much. How did the appointment go?

Mike

Mike, the Ear Nose & Throat doctor came up with nothing. Very frustrating. He said that my wife did not have vertigo and he didn't think there was an inner ear issue. He did say that they could run an MRI, but he questioned whether my wife would be still enough. It would have been a relief if he in fact said it was vertigo or something known.

So the mystery continues, it's been over a month, every day and every single minute of every waking hour... dizzy. The ENT felt that perhaps she was more a step off or lightheaded, even though my wife insists she is dizzy like getting off a merry-go-round.

I have a call in to the neurologist again. I am thinking that this is neuro stuff going on and that even though she was carefully brought up to her current dose of Xenazine, perhaps there is a side effect or issue with her meds mix. Does dizziness come from movements, where she needs to up the Xenazine... or is the Xenazine the cause?

She has not complained about depression at all but she is at wit's end today and acting in a pyschotic way to be honest. Perhaps she needs more of the risperidone or amantadine... I really don't know.

She shifted from Effexor and doubled up on Sertraline (Zoloft) from the anti-depressant standpoint months ago, as the neurologist thought Effexor might be an issue with Xenazine.

We're at wit's end. Thanks for following up.

Ty sorry you didn't get an answer. I wouldn't give up if I were you. As you know people present so differently, cag counts and everything under the sun contribute. I can completely understand what she is feeling and I'm willing to bet her description is that of vertigo although it may not be textbook vertigo. Does she have nausea/vomiting or severe episodes where she can't stand.

It took me several ENT's, surgery for Meniere's (not necessary) and a number of Neurologist to find out not to mention almost 2 years. I went through all the vestibular testing you can think of (several times) and did poorly on several but it wasn't until I went to Mayo where all the Doctor's and staff are on the same page that I finally got an answer. I had to do all of the testing but they were very upfront about the results and what they thought was happening. HD of course was not even on the radar at the time. Your thoughts of a Neuro sound best although all Neuro's or Doctor's don't think outside the box. I know Mayo has a philosophy that they don't believe one illness is always responsible for all symptoms (hope I got that right).

Good Luck
Keep us informed

Mike



Edited 1 time(s). Last edit at 01/21/2015 08:51AM by mikee.

Mike, thanks again for your interest. The most amazing thing happened yesterday... my wife woke up and said she was not dizzy. She basically rejoiced, even though that typically isn't her personality!

I am still trying to understand this, especially considering that Monday was the peak as far as worriedness goes, where my wife was really getting fed up and losing composure. Again, this had been going on for about four weeks or more, everyday, and all day, with no known relief.

The goofy and eccentric things I looked at as "changes" really didn't involve meds as she was already ramped up to her four pills of Xenazine daily. She only takes one amantadine pill in the morning and one risperidone pill in the morning. What had changed is that we fired our housekeeper who came bi-weekly and my wife stopped using her Flovent inhaler (preventive inhale for asthma maintenance).

We finally got housekeeping and dusting/vacuuming done one week prior to yesterday. She started up Flovent again on Monday. And I reminded her to keep drinking plenty of fluids as she never gets close to 8 glasses of water/tea a day. Yesterday morning, Tuesday, she wakes up and says she is fine although her balance is still wobbly as before. Really strange.

The only other thing I can share is that ever since yesterday's revelation, she has had a voracious appetite to put it mildly. She is hungry and eating to the point that I am afraid she is going to get sick from over-eating. So I don't know if part of her issue was the need to get more food in her system or what. She was saying "hungry... dizzy" non-stop for weeks, and now she is saying "hungry... hungry". So I have no idea of the neurological side of this is that she gets this idea in her head and it locks in with her or what. She sometimes says "hot... cold" in succession, where one can't be hot and cold in the same mili-second.

I spoke to the neurologist today and she as happy to hear no dizziness. But she wants to wait a week before adding more Xenazine. My wife's movements and appetite have ramped up. But at least she is not dizzy... so a small victory today!! By the way, I assume the Mayo Clinic told you that dizziness is tied to H.D. progression...?

Thanks and be well,
Ty

I have an appointment at Rush Memorial in Chicago next month due to dizziness 24/7 for me. I started to get depressed because it won't go away. I will update you on what they come up with.
TomR

Tom, I can't say for certain what I just witnessed, but ever since my wife's dizziness ended, she has had the most voracious appetite where she is hungry all the time.

It makes me wonder if she was going through a phase where her movements were ratcheting up and she was not eating as much (evidenced by the weight loss), and she was perhaps needing more food in her system. She seems to mentally believe that the Flovent inhaler was the turning point, her maintenance daily inhaler for asthma control.

I tend to believe that she had been needing more Xenazine and/or food for the increased chorea. I was more focused on her not drinking enough water and fluids throughout the day, but then again, many people don't drink 8 glasses of water a day or 64 ounces. Perhaps the food and protein intake was the bigger issue.

Good luck with your appointment, look forward to hearing what comes of it. Hopefully some good advice and direction offered for you!

Small milestones are acceptable here. That's good news.

Yes Tom. Mayo did say it was associated with HD. There are other things that I have in conjunction dealing with balance but dizziness/vertigo as I am told can be part of it. Also there was a head injury that preceded HD and is thought to have contributed to late onset.

Good Luck,
Mike