Help me! I can't sleep from my dizziness problems and am losing hope

Ears, nose and throat
1

Hi there,

I am new to this community and hoping that someone can help me. I am a 27yo female and first got vestibular neuritis at the age of 17 (2007). This was debilitating couple of weeks, after which the severe symptoms subsided and I was left feeling like I was on a boat. I did vestibular rehab and they told me I had compensated for my weakness. I was left feeling this awful pressure in my head ever since that my otoneurologist attributes to the damaged nerve overcompensating. 

Flash forward to July 2016. I come home from a concert, lay down in bed, and start to feel like I am on a roller coaster, but the weird part is this is limited to my "stomach" and something I call "stomach dizziness" as it was not a head sensation. It comes and goes. I go to my doctor and the symptoms don't yet scream "vertigo", yet I go to an ENT anyway. They don't find anything upon first examination (had a hearing test and then some positional tests). I can still remember feeling the sensations in my stomach when the ENT laid me back and turned my head. Still, they saw no nystagmus or anything that would indicate BPPV or any other problem. This was ruled out. They sent me off without recommendation of further balance testing. Between July and April, I have these stomach dizzy sensations on and off, though now I am also starting to get head dizziness. Not quite room spinning sensations, but feeling like I'm moving nonetheless. These sensations continue to be mostly limited to when I lie down to go to bed at night. So far, it works better to sleep on my right side and not my left. It still interrupts my sleep to the point where I have to start calling out of work sick or canceling plans due to zero sleep the night before.

I decide to then go to an otoneurologist at one of the best hospitals in the country to find out the deal. He does a complete workup, including balance testing and an MRI. Before we do testing, he suspects some type of Vestibular Neuritis situation, possible decompensation from my damage in 2007. My MRI (which I had done several in my life before without any abnormalities) comes back abnormal. He also tells me I have vestibular neuritis in my right ear that he believes is responsible for the symptoms. But first, let's get back to that abnormal MRI:

 I am told my cerebellum is "smaller than for someone my age" and am given scary terms like "cerebellar atrophy". The otoneurologist sees zero symptoms of this in clinical presentations. I pass his finger to nose tests and his walking tests and he is not concerned with the MRI finding, reporting that the finding was surprising but possibly something I have always had since birth. I tell him I have previous scans that he can compare and this is good news for him. I am told if the cerebellum is the same size as from my previous scans, this will be "very reassuring" for us. He doesn't say he needs these right away, though I scramble to get these previous MRIs and CTs within the next week. (I should also that he did not explain cerebellar atrophy and after leaving his office I looked it up, quickly realized it was degenerative, and thought I was dying in the next couple of weeks. It was the first time in my life I had ever been given a serious diagnosis (even though he didn't seem to be too concerned). I put in a request that he look at these ASAP as I am scheduled to leave the country on vacation in a couple of weeks and need to know if I am okay or not. He compares the scans and I get a call saying that I am fine, the sizes remained constant over the years, and that this is probably a normal variant in my cerebellum. I am hugely relieved.

Now, onto the vestibular neuritis. He cannot tell me whether this is the same damage as 10 years ago or new damage, though he says that this does not matter as the treatment is the same and I should be feeling better soon. I am very hopeful at this point in time. 

I start the VRT (vestibular rehabilitation) and my PT says I have a triple whammy: nerve damage, neck issues, as well as signs of crystals. She saw nystagmus on my right side and did the Eply maneuver right away. This made my dizziness worse. For the first time, the whole room would rapidly spin around when I lay down. Now it sounds like BPPV but it was not like that until she did this maneuver. I go back to her and she feels terrible. She "resets" it and does another maneuver.  This time, it didn't "fix" my dizziness but it at least made those terrible bouts that SHE gave me go away. So now I am back to baseline. I should also mention that my otoneurologist NEVER saw any signs of BPPV and neither did the comprehensive balance tests. When I told him about what the PT said, he said that patients with right nerve damage may sometimes present with mild right nystagmus on the BPPV tests, though there are no crystals and it is not actually BPPV.

I continue on with VRT exercises, though I only see this physical therapist a total of 6 times in several months. I am told it is mostly home exercise. I do not improve physically in this time. I ask my neurologist why, if this is truly VN and not positional, why my symptoms either start or become so much worse when laying down. He explains that my body has probably not compensated in the lying down position yet, which is a compromised position for the body. I start doing exercises that have lying down incorporated in them to see if this helps. I also am given habituation exercises that would normally be given to BPPV patients. I am beyond confused. My insurance then denies further PT visits, and my PT says balance-wise I have "compensated for my weakness". Physically, I am no better than before and my sleep is actually getting worse. The best way to describe it to you guys is I lay down, close my eyes, and feel like I am floating a way. Sometimes, I get the belly flipping roller coaster sensations and sometimes I just feel like I am on a boat. Sometimes, I wake up in the morning rushing to the bathroom. Most recently, it has been clearly worse when trying to lay down on my right side, but has been better on my left side. I do not prop myself up in fear that that will make my body less likely to compensate in the lying down position. The problem is I am not getting sleep. Right now, I am typing this on zero sleep because I am starting to lose hope. Evidence for this really being VN is minimal (at least from my perspective) besides the fact that doing the exercise where you close your eyes and try to "think feet" is so hard for me and I do feel the symptoms at this time. This is the only time I feel symptoms when standing up as I am closing my eyes and knocking out one of my 3 systems that help me balance. I sleep with the light on for this reason as pitch dark makes me even dizzier in the stages where I am trying to get to sleep. Other than this, I am starting to wonder if my neck is truly the source of this problem and what I could do to potentially help this aspect. I should also mention I am weaning off clonazepam, a drug I took for far too long (9 years) when no actual anxiety was present but rather as a remediation for excess jaw and head tension (which probably resulted from the vertigo). The sleepless nights have only gotten worse since weaning off the drug. I feel helpless and hopeless and go into each night hoping that I will sleep but never sleeping. I sit up for long periods of time and focus on an object to make the dizziness go away, which it does, but just resumes when I lie back down again. I am also on the drug Spironolactone for hormonal acne and have tried getting off of that to see if it helped my symptoms. I only stopped that for 3 days before resuming again, as I was still very dizzy in the nights I hadn't taken it. Other than that, I take my BC pill at night which I don't think can be the cause of this. I would like to potentially get off all of my medications to see if any are contributing or even change my diet at this point to  maybe an alkaline diet? Has anyone done this with success? I should also reiterate that I get this terrible head pressure that makes me feel like my heads going to explode. Does anyone else experience this?

I don't want to feel alone in this anymore. I am sick of being always tired and very very tired of being sick. 

Thank you in advance for taking the time to read my story. 

Ally

2

First of all Ally, thank you for writing your story so clearly and coherently. I could almost say it was a pleasure reading it, though of course I take no pleasure in hearing about your suffering.

I can't offer a lot of advice, though there will be others on here who can. We have a clinician who occasionally steps in on the vertigo boards, and I'm hoping he'll have some useful input. My personal "speciality" seems to be BPPV, which I've had three times in my life, with two attacks occurring in different ears since the beginning of this year. These were clear-cut BPPV, though I think it raises the question of why I'm getting repeated attacks. Both my GP (PCP) and the physiotherapist who treated me with the Epley on a recent occasion say there's no such thing as susceptibility to this condition and it's all down to coincidence. I hope they're right and I won't get it again, though at least I now know who to go to, to get it fixed. I can, however, identify with your "stomach dizziness" on lying down, and the feeling of being constantly on a boat.

I suspect that the causes of your problem will turn out to be multiple. You clearly have some kind of vestibular hypersensitivity left over from your original attack of vestibular neuritis.

What also jumps out at me from your post is the mention of excessive head and jaw tension. You say this probably resulted from the vertigo, which I'm sure is true. However, tension in the neck and jaw is in itself a common cause of quite severe dizziness, which can in some individuals progress to symptoms of actual vertigo such as you describe. As a young woman - long before my first attack of BPPV - I was in the habit of unconsciously clenching my jaw when under stress. As a result of this, I quite often got attacks of severe dizziness and nausea, albeit without the other symptoms of vertigo. I wonder whether in your case the vestibular and neck/jaw tension have been feeding back into each other on a kind of loop, each making the other worse.

Finally, I expect you're aware that dizziness is a side-effect of spironolactone and one of the effects of clonazepam withdrawal - though I don't believe this would amount to the very real symptoms of vertigo you're reporting in either case. And of course, another withdrawal symptom of clonazepam will be to make the head and jaw tensions temporarily much worse, which will also add to your symptoms. You don't say when you started tapering, and whether this tied in with the worsening of your symptoms in 2016. I'm wondering whether you could get any practical help with relaxation for these areas. Physiotherapy would be best, of course, but I do understand the problem with your insurance, even though I'm not in the US.

However, whatever you do, please don't speed up the tapering of your clonazepam, which could cause all kinds of problems after nine years on this drug.

I have to say, as a former nu rse (neuro, but from way back when) that I could wish doctors would think three times before putting patients on any kind of benzo, unless it's for seizures or for very short-term anxiety. I suspect this is a not-insignificant part of your problem, though you clearly have long-standing vestibular issues.

It doesn't sound as if there's any serious problem with the size of your cerebellum. In any case, you'd probably be having problems with standing upright and walking by now if this was the problem. However, it might still be a good idea to get regular checks from your neurotologist to monitor your general condition. He's probably best-placed for a general overview.

I do hope you can get some relief from all this soon, and at least return to the "base level" of dizziness left behind by the vestibular neuritis. I hope too that more knowledgeable posters will step in with some more useful advice. Don't forget, though, that this is a UK-based site, so many posters will have no knowledge of how other countries' health systems function, and may not pick up on the fact that you're in the US. This can sometimes lead to some slightly confusing administrative advice!

3

Hi Lily,

Thank you so much for your thoughtful and helpful reply. I think you make an excellent point about my jaw tension. I do use a night guard for that, though I feel like I have become used to this and it is not doing much anymore. I do think getting PT in regards to this tension may be beneficial for my vertigo symptoms as well. 

To answer your question about the clonazepam withdrawal, I just began tapering off of it a couple of months ago and definitely have noticed an increase in my symptoms, including the vertigo as well as the tension. It is very validating to hear you say that this withdrawal can increase the tension, at this can sometimes feel like there is a torture device on my head. I also feel very strongly about your standpoint that doctors need to be cautious about their prescription of these benzos as well as the length of time they recommend patients stay on them (and my doctor's obvious complacency with me being on the drug until my brain MRI was alarming). 

I appreciate you weighing on the cerebellum aspect. I agree and I think due to my anxiety that fear just creeps back in about something being really wrong. I will plan to follow up with my neurotologist as well as get a second opinion on the MRI to be sure. 

I do want to bring up something that may possibly be contributing to some recent relief in my symptoms. I am a speech/language pathologist and recently read on an SLP Facebook group that somebody had suffered over a year of vertigo due to allergies inflaming the vestibular nerve. 

Have you ever heard of allergies either causing or exacerbating vertigo due to inflammation of the vestibular nerve (especially when already damaged). I have been taking Zyrtec for about a week now and have noticed in the past couple of nights/days that my symptoms have improved. Thinking back to when the vertigo started, it was during allergy season, it fluctuated with the months/seasons (though I don't recall specifics of when and wish I had kept a journal), but I DO know that it got particularly worse the past couple of months when I know the allergies were horrible for many people here. 

I really hope someone out there has some type of information on allergies and vertigo or specifically allergies and vestibular neuritis. 

The exercise in which I close my eyes while standing, I have recently felt very balanced and less symptoms during this. I have been interpreting this as compensation for the nerve damage, though the timing is very suspicious with when I started taking the Zyrtec. Rather, what if it is due to the inflammation in the R vestibular nerve going down and the aggravation of the symptoms stopping?

I am so curious if you or anyone out there has ever had a link between seasonal allergies and VN or other chronic vertigo.

Hope to hear back soon and again, thank you so much for your response. It made my day.

Ally

4

Hi there,

Just read you post and found some of the points you stated interesting and similar to mine.

I usuallly get vertigo seasonally.  either Sept/Oct and then again  April/May. Ir usually lasts about 2-3 weeks.  Mine is positional usually from my right ear.  I sometimes take Serc for it.  It happens when I roll over in bed or when I am just laying down and get up. I was told it is BPPV.

I am also withdrawling from a benzo and an antidepressant ( Trazodone)  since March/17.

It has been an absolute nightmare. My dosages were low and my frops were small but still I have gone through a terrible time.  I am coming off these in order to have an ablation on my heart due to SVT.

many many withdrawl symptoms.   One of them just recently is a feeling in my left cheek and tonguw where they feel either numb or thick. I do have TMJ and wear a nightguard but wonder whether it is helping or not. I got a new night guard a couple of weeks ago and found it was pinching my cheek when I put in in so I went back to my old one.  This is when I started feeling this weird feeling with my face and mouth.

Not nice

5

Hi there,

I do wish you relief in this horrible time. I had a pinching in my cheek with one of my night guards. I told my dentist and he was able to make an adjustment until it was just right. I would try to get the new one adjusted, especially to try to get the feeling in your face/mouth to go away.

I am happy to hear you are getting off benzos as the long term use really isn't good though this time while we are withdrawing is truly horrible. I remind myself every day that it is worse to stay on them and that I can do this. 

It is interesting, because I have always had a positional component to my vertigo, though the neurologist. ENT, balance testing did not show any BPPV. Only vestibular neuritis. It is very confusing though because I have had damage since 2007 which resolves in months and have not had the vertigo symptoms until the last year. And this time, they are different. More sensations of moving rather than true spinning sensations.

I did just read an article ten minutes ago from a BPPV and allergy related case. The two were linked and treatment of the allergies helped the patent. 

I also read several things about links between Meniere's and allergies. 

Nothing yet on allergies and VN though it does appear there is and can be a link between allergies and vertigo. 

The timing of your episodes is very suspicious and consistent with allergy season. It would be interesting to know if an antihistamine helped your symptoms. I have also heard of people that use the antihistamine whether Claritin or Zyrtec or whatever along with an anti-inflammatory like Advil. 

I have also read great things about the paleo diet as well as reducing inflammatory foods.

6

Yes, I have often wondered about the allergy thing.  I also get ocularr migraines seasonally but never a headache. Just the crazy eye stuff for about 20 minutes.

I had allergy testing done a couple of months ago with nothing coming up, but I was told these testing are not very accurate.

Strangley, different to the face nonsense I explained earlier, I have on a daily basis huge pressure in my face from the eyebr ows down past my maxillary sinuses. This plugs my left ear and I have to hold my nose and blow out to continue to pop my ear.  It gices me a terrible off balance feeling, but no one can figure out why.

To many crazy things going on 

I have not taken an antihistamine for any of this.  Do not want to provoke anything with my SVT, and can not take advil because of blood pressure pills

What is your plan for weaning off the benzo?  What amount are you coming off off? and how are you weaning time wise.     Side affects?

7

I am coming down .125mg every two weeks so basically very very slow. It was suggested that I come down .25 every week and this was pretty rough on me with always feeling sick, nausea, insomnia, and one very strange experience of not feeling connected to my body. Now going down .125 per doctor recommendation though she still recommends every week. I am doing every two weeks just because I know my own body and want less side effects with my vertigo stuff going on. 

I started at 1.5mg a day (0.5mg 3x a day) and am now at 0.75mg total so I have reduced my dose in half. It's going to be about another 12 weeks before I am off completely, but I am hoping that when this happens, I have minimal side effects when I am completely off. 

What about you?

My fiancé gets those ocular migraines with the same crazy eye stuff for 20 minutes but followed by a 4 hour excruciating headache that he just tries to mitigate with a ton of advil. It is frustrating that you cannot take an anti inflammatory due to your BP medication but understandable. How do you find relief from pain? (regular pain not all the crazy stuff we go through daily with our vertigo)

Have you seen an ENT about the pressure sensations? or a neurologist? I too have periods of time with tons of pressure, though it is not limited to just my face but whole head sometimes as well. The neurologist thinks this is happening in an effort to try and keep my body still as a response to too much vertigo. He thinks mine is muscle tension related starting in the neck and going upwards but I have had balloon pressure sensations in my face and head before that feel like they get bigger and bigger and are going to pop (but never do) just horrible pressure. 

In your case, it may very well be sinus related, but I do not know what over the counter medications you are allowed to take with your condition. Maybe some natural homeopathic sinus remedies. Has anyone been able to explain those symptoms?

The way you describe the ear thing though makes me think sinuses but also eustachian tube dysfunction which is very common and makes it difficult for the ear to regulate inside and outside pressure. An ENT or otolaryngologist would be able to help with this. 

I get so frustrated with "pressure" and "dizziness" or "vertigo" because no one can see it and it is invisible but so very debilitating and powerful. 

 

8

Hi Ally,

I'm glad to see other posters have contributed some very useful points while I was on holiday.

I have no more input on the subject of allergies specifically inflaming the vestibular nerve. However, as a lifelong allergy sufferer, I know my seasonal allergies often have a very bad effect on my sinuses. This can make my ears pop, cause short-term tinnitus and even make me go deaf in one ear on occasion. Since the sinuses and the ears are closely linked, it wouldn't surprise me if allergies could further inflame the vestibular nerve, particularly in cases like yours where there's an existing pathology.

I'm glad to hear your vestibular exercises are starting to bear fruit, and hope you'll soon be feeling much better.