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lealonnie1 Asked December 2016

Chronic dizziness/vertigo with dementia and Alzheimer's. Any advice?

My 90 year old mother lives in assisted living and is having chronic vertigo/dizziness with vomiting. She went to the hospital on Monday and was given every test known to man, all negative. Meds were reviewed and her Gabapentin dose was reduced. She is still dizzy and suddenly incontinent at night; wets the bed in spite of wearing briefs. She was diagnosed with progressive dementia at the hospital.......I don't know if we're dealing with vascular dementia, Alzheimers, or mixed dementia. The biggest issue is the dizziness, which the hospital said was NOT vertigo, but the Physical Therapist at the ALF and the neurologist says IS vertigo. Meclizine is not effective. Anybody going through something similar who can offer advice?

lealonnie1 Dec 2018
Unfortunately, mother's dizziness is back again with a vengeance. She's taking practically no medicine these days, yet the dizziness is relentless, but no vomiting this time. Sigh. Dementia is progressing along with sleepless nights several days a week. Valium RX expired and I feel like screaming. Of course it's Christmas and hard to get hold of the doc. Staff at the ALF is taking great care of her, but nurse thinks she's overly dramatic and doing better than she claims. I fully agree. She's insisting on wheel chair assistance to use the bathroom. At wits end, really. Spent 2 hrs there today and she was fine. ....now dying 2 hrs later. I'm not taking her back to the hospital AGAIN for this. All they do is give her Valum and she's fine. Wondering if this is more ANXIETY related, especially after reading comments

Dave1000 Dec 2018
I was diagnosed with "MCI due to Alzheimer's disease" in 2015 when I was 65. My first symptom was chronic dizziness, but cognitive problems followed. Audiology tests ruled out vestibular system problems -- problems were in my brain, not my ear. MRI showed brain atrophy typical of Alzheimer's disease. (Also poor cognitive test scores.) They said the disease was attacking the parts of my brain involved in balance. They sent me to physical therapy where I learned "habituation exercises." They are easy, and they worked great for me. Search "habituation exercises" on Google and YouTube. The exercises help the brain use other senses to compensate for what's being lost.

I wrote down my experiences my book "Beating the Dementia Monster."
Riverdale Dec 2018
How wonderful you made this progress and are able to report about it. My mother has had periods of dizziness and also was helped with therapy for it and to do certain exercises when it occurs. I will continue to hope you find solutions for yourself and feel positive about that.

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PapaLeo Jul 2018
I wish I had an answer. My 79 year old husband suffers with dizziness and falls often. He has dementia but otherwise is incredibly healthy. This is becoming a problem because his physical activity has been greatly reduced which will eventually cause other problems.

moongazer Mar 2018
Yes, Huggybear, this is the same situation with my mother - dementia related dizziness. My mom stays in bed a lot now too as she is also afraid of falling when dizzy. A miserable existence. No medications help without causing other side effects. I feel for you and your husband...so sorry.

Huggybear Mar 2018
My husband was diagnosed with dementia,everyday he suffers from dizziness makes him feel so bad he has to go to bed .It is not his blood pressure that's ok .But the Drs say it's part of the dementia so the poor man suffers every day.

tperri123 Feb 2018
My husband has dizziness and dementia and excess mucus in his throat at night but if he is careful not to have any milk products after lunch, he's fine. I'm going to cut out his Gabapentin though. That might be contributing to his dizziness.

lealonnie1 Feb 2018
Moongazer......mom's issues resolved entirely once she was taken off the gabapentin and the sleeping pills. Your mother is anxiety situation sounds terrible. My mom's very similar with the OCD and anxiety issues but not to the extent yours suffers from. It really is a shame but the lifetime anxiety issues definitely seem to worsen with age and dementia-related problems. My mom has now lost most of her memory and has no idea what day or time it is. When she does have cognizant times she is even more frightened by the realization that she is losing her mental capacity. Last time she went out with the Assisted Living bus she got stuck in the dressing room at Kohl's and couldn't get up from the seat. Now she is refusing to ever leave the assisted living facility again. It's all too much after a while, isn't it?

BuzzyBee Feb 2018
I also agree with pamstegma get her ears checked. Turns out my vertigo was caused by an inner ear infection. Ended up having an op but have no more vertigo. Glasses help a bit but not bi- focals or veri focals. My eyes have astigmatism, so I have great trouble focusing. Bi's and varies made this worse. So it is two pairs of glasses. One for reading and one for everyday other stuff.

Good luck hope you have solved it for her. Its not pleasant.

moongazer Feb 2018
I forgot to mention that my mom's dizziness often accompanies or is an aftermath of the anxiety attacks. Her face goes numb too but then feeling is restored after taking an anti-anxiety - low dose Ativan.

moongazer Feb 2018
Oh I wish my mom's dizziness was resolved so easily by removal of a medication. She has tremendous anxiety and panic attacks probably since the onset of dementia. Also, she has much unresolved trauma in her nervous system from situations throughout her life. Fear is at the root. So little to be done other than management with a low dose anti-anxiety to allay the panic attacks when they happen. Not the best solution, but better than all the ER trips she was taking due to thinking it was a heart attack. I'm happy that your loved one has found relief through stopping a medication. Thanks for your contribution.

jjariz Feb 2018
My DH had lots of similar problems. Many of them resolved when he stopped taking Gabepentin. Horrible med.

moongazer Feb 2018
How is your mom doing on Semetil now? I'm thinking of asking her doc about it.

Pitscottie88 Sep 2017
My 82 yr old mum has very similar episodes and she has Alzheimer's, I am a nurse and I got her GP to prescribe Stemetil (Procloprazine) three times a day and it works a treat. Try it, I know that mum gets really miserable when she has it and becomes incontenent which she usually isn't. Hope that helps.

moongazer Mar 2017
My 88 year old mother is going through the same thing...vertigo/dizziness, along with some dementia. Lots of tests done, nothing found. Vertigo often accompanies dementia, but not always. The vertigo points to vascular dementia, but a CT scan was done and no signs of past strokes or anything that would cause vertigo. She's taking meclazine which helps a bit, but doesn't completely alleviate dizziness. I'm investigating postural issues and inner ear crystals as a possible cause. Will keep you posted on what I learn. Dementia is bad enough, but the vertigo/nausea is quite unbearable for my mom.

lealonnie1 Dec 2016
I did speak with the neurologist again today. He says that with the neuropathy in her legs/feet, being mostly deaf, and having poor vision, she's lost a lot of her senses. As a result, she doesn't know where she is in space. She's been suffering with vertigo (on and off) for the past year, and it's worsening due to the other factors mentioned above. She has been refusing to wear her eyeglasses, which also contributes to the problem! The PT at the ALF is working with her on the movement therapies for vertigo, and she was feeling fine yesterday, and able to come to my house for Christmas dinner. The doc says 'no way' is she suffering from Parkinson's, fortunately. Givingit: she is given ear drops once a week (since the last vertigo episode) which dissolves the earwax and prevents it from building up. When I took her to the ENT, he 'killed her' and she refuses to ever go back again. Sigh.

Thanks to everyone for sharing. We are past 'this episode' for now, it seems, so I'm hopeful that with the reduction in Gabapentin and the ongoing PT, she can live a bit easier of a life. I did have a nice chat with her yesterday about the importance of wearing her eyeglasses and her specially made shoes, and she is compliant (for the moment). We also had a chat about being stubborn, and how it's not helping her to be so adamantly against using things designed to IMPROVE her situation! It's really tough being so old and so NOT in charge of one's own life, isn't it?

GivingItMyAll Dec 2016
I'd look at the side effects of meficines that she takes. We went through this with mom several years ago and stopped several meds one at a time so we could evaluate. Turned out she no longer needed the blood pressure med she had been taking for a good number of years. I believe that was when we took her off Namenda and/or Aricept as well. We were able to help her dizziness. Also you might have those plugs of earwax removed on a regular basis. Some people are just prone to heavy earwax formation. And it helps their hearing!

BlackHole Dec 2016
LL1: Very difficult, when the parent's self-reporting becomes unreliable. Gotta dial up your own eyes and ears. Constantly watch for cause-and-effect scenarios and changes. Take notes. (Not that you need one more thing to do!)

freqflyer Dec 2016
lealonnie1, I just thought of something which is totally out in left field but it will make me feel dizzy.... pants too tight around the waist, especially when sitting... it will cause acid reflux and some lightheadedness. What happens is the too tight waist will cut off blood flow to the brain.

cwillie Dec 2016
I've found with my mom that the "no pain" thing is subjective and depends on her thinking at the moment. It may mean "no more than usual". Sometimes it's "no", but 15 minutes later "I have a headache". To her pain means in her hip/back/knees, not a headache. I usually dose her routinely because I know she is always in pain to some degree.

pamstegma Dec 2016
I think I would be looking for a new Neurologist, one who handles Parkinson's and/or peripheral neuropathy. There's some real idiots out there who like to give shots for carpal tunnel and don't do much else.

lealonnie1 Dec 2016
She does shake (hands) somewhat, so maybe Parkinson's related. She's been to the ENT and had a huge plug of wax removed from her ear (a couple years ago). She does have some orthostatic hypotension, but nothing dramatic. She's been to the Neurologist who sees 'nothing wrong' with her. I do believe it's all positional vertigo related, and the PTs at the ALF are working with her on the Epley maneuvers. Everything seems to make her dizzy, especially turning her head and bending over. The PT did a treatment on Thursday to re-position/dislodge the ear crystal, and she did feel better the next day, but still not 100%. She will have another treatment on Monday. She's not dehydrated, no dark urine, no anemia, no headaches/migraines. Due to the dementia (which has been progressing for 2 years now), it's really hard to get a straight answer from her about symptoms. One day she says one thing, the next day, something completely different. She told the neurologist she had no pain in her legs/feet from neuropathy, only numbness, then told the nurse she has pins & needles/burning. The Gabapentin was reduced by the neurologist since she had 'no pain', then the next day, the story changes. It's a really tough situation. Thanks for all of your input, it's very appreciated.

stew7428 Dec 2016
Meniere's Disease is one problem related to vertigo. Some ENT doc's specialize in it and chronic positional vertigo is another. Is this happening only as she first stands or all the time? It could also be that her blood pressure drops when first changes positions. The last one I mentioned is pretty easy to diagnose. You take her BP sitting, have her stand rather quickly with the BP cuff still attached to her arm and immediately take her BP again. If either number drops, then that could be it. Also dehydration can cause dizziness. Is she drinking enough water? How dark is her urine? Is she anemic? Have that checked also. There is also a type of migraine that causes dizziness. Is she seeing colored lights with this? Some people just simply feel faint. Does she complain of things going dark or blank when she does this? It's a really difficult thing to figure out.

BlackHole Dec 2016
Falling backwards is associated with Parkinson's Disease, progressive supranuclear palsy, cortico-basal degeneration, multiple system atrophy, and unclassified Parkinsonian disorder. People -- and medical professionals -- often think "no tremor, no Parkinson's/Parkinsonian." Not true. Google tbe disorders I listed. If anything rings a bell, get mom to a neurologist who specializes in rare movement disorders and/or geriatrics. (Are you near a university medical reseaech group? If so, all the better.)

pamstegma Dec 2016
They never test the ears. See an ENT doctor (ear nose and throat) who can check for wax in the ears and otoliths (ear stones) that could interfere with balance. Look on youtube for the "Epley Maneuver" that you can do at home. If that maneuver improves balance, DEFINITELY see the ENT.

freqflyer Dec 2016
lealonnie1, we really have to become Columbo when it comes to cases like this.

See if having your Mom sleep with more pillows or less pillows would help. Or if the pillow is feathered, she could develop an allergy to the feathers.

For myself, I need to have night lights in my room which help me a lot. I refuse to sleep in a totally dark room, if I wake up in the middle of the night, my brain gets confused about which way is up. That's from the visual vertigo.

lealonnie1 Dec 2016
Sunnygirl; Mom is ALWAYS 'falling backwards'......we bought her the shoes with lifts in them to ward it off, and she 'hates' the shoes, so the problem persists. We have consulted with a neurologist who could find no issues with her aside from neuropathy in her legs (non-diabetic); her feet are numb, which also contributes to the problem of being off balance and not really knowing where she is in space,

Freqflyer: I am definitely going to talk to her primary care doc & PA about antihistamines and perhaps Flonase as well. She has chronic mucous in her throat, so maybe those would help. Thank you! The physical therapist at the ALF has given her the vertigo treatment twice; the first time it worked, she was feeling ok the next day. This time, not so much. She will get another treatment on Monday. Interesting about the visual vertigo and being triggered by stripes or checks. She has no patterns in her room. She seems to develop vertigo while she's sleeping (she sleeps on her back and does not roll over at all, according to her), which seems odd. She's always worse in the AM and then starts to feel better towards the afternoon hours.

freqflyer Dec 2016
Oh, I just thought of another thing... there is visual vertigo. I have that whenever I look up to the sky while standing up, or look up on the top shelf. It also triggers if I am in a room that has striped or checked wallpaper or striped/checked carpeting. Flickering lights also kick it in.

So check around Mom's room and other rooms she may go into at the Assisted Living for these things.

freqflyer Dec 2016
lealonnie1, my Mom had issues with dizziness and she was successful taking the prescription "Anti-vert", but the generic is Meclizine didn't work at all for her.

So my Mom started to try over-the-counter antihistamines and that gave her some relief... but note there are quite a few different types of antihistamines... diphenhydramine is one of them which goes by the brand name of Benadryl... another one is chlorpheniramine which the drug stores sell under their own brand name. It was the latter that seemed to help my Mom. And there are other types of antihistamines. Check with Mom's doctor first.

If in fact it is vertigo, there is a physical exercise that can help but your Mom would need either a doctor or physical therapist to do this... it's a form of moving the head to re-position the crystals that are in the ear canal. Don't know if your Mom would want that at her age, but if it gives her relief, it would be well worth it. Just one or two sessions should help.

And it is amazing how many prescription medications can cause dizziness. I know you mentioned those were checked, I would get a second option.

Sunnygirl1 Dec 2016
This is puzzling. It could be any number of things. I know that when my cousin was diagnosed with dementia, she had very poor balance. I don't know that she complained of being dizzy, but, she did have TERRIBLE balance. She would fall backwards due to it.

I suppose that I would consult with a neurologist. Obviously, her symptoms must be very stressful and uncomfortable for her. I'd try to get her doctors to immediately prescribe something for her nausea.

cwillie Dec 2016
You say she was "given every test known to man", but what were they testing for exactly? I imagine they wanted to rule out serious, life threatening causes like heart arrhythmia or stroke, and once those were ruled out didn't spend too much time trying to find any other cause. Hospitals are great for emergencies and life saving procedures, but not so great when it comes to chronic diseases or things like unexplained vertigo. And of course as the holidays are approaching senior staff is probably off on vacation.
Also, anyone who has ever experienced vertigo can understand just how miserable and disorienting it is, I can't imagine they could accurately diagnose any dementia under those circumstances.
There can be so many causes, you need to work with her regular doctors to try to get her some relief and to get her to the appropriate specialists.

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