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Off topic - sorry - except psychological stuff

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

I was going along really well and truly feeling my oats back to singing like my oldself and exercising like a forty year old, when I had a very violent case of vertigo that led to an ER visit. By the time I got there, I had virtually lost the use of arms and legs and my head was lying either to the right or left of my shoulder. I could answer questions but slurred my words. (A bad drunk without alcohol!). They gave me anti dizzy and nausea medication (I had been projectile vomiting) which revived me and allowed me to begin to eventually let me carefully walk to the bathroom, etc. They gave me a quick test and diagnosed me with Benign (I love that word) Vertigo. I was scheduled to follow up with my doctor.

Luckily I had been seeing a Otalaryngologist in a good firm with an excellent ear specialist. Neither doctor agreed with the ER doctor. It was determined that I had lost 100% of my hearing in my left ear.

I had a shot of Prednisone directly enjected into my ear and an MRIs of my brain with and without contrast. Although the doctors believed this was caused by a vascular event or brain tumor, no evidence of this was found. Blood was taken to determine if I have an autoimmune disease (not the first time). Luckily the event of metastic lesion is found only seven per year internationally in the inner ear, which is where they believed my event took place.

All I know is that I am still wobbly, can't drive or exercise at my gym, and that breaks my heart. I hate being stuck in the house especially since bending over and picking up things, running the vaccuum clearner, etc seem beyond me right now. I am unstable and very tired. I read that one of these types of occurrences are among the most anxiety and depressive things that can happen to you and since I felt that way after the Lymphedema diagnosis (which hasn't turned out to be that horrible mostly because the weather has been cool), I am going for psychiatric consultation. The day after I could not recall the word "benign or vertigo" which was really weird. I am getting better daily.

The Ear doctor will call me when the blood tests come back and I plan to go for the physical therapy and repeat ear test scheduled for Thursday to see if there has been any recovery as a result of the Prednisone. I was told there is little hope my hearing will recover even slightly. Monday I go to the Pulmonologist, a visit which was already scheduled since this type of ear-to bronchitis thing is seasonal for me. It has already descended to my chest. The doctor seems to be convinced this is a wicked virus that seems to live in me like a perrenial.

I guess what I am saying is this feels like the broken shoe lace. It sounds like nothing but it is another chronic illness that doesn't have anything to do with the cancer except that it seems to be born from some sort of "immune system" disorder. I passed all the allergy tests which now I am so glad I had done. I am going to have a full psychiatric evaluation for depression and anxiety at MSK if I can get one. I also need a damage assessment and some emotional support. If I am lucky, maybe I will find a board like this but unfortunately this is a rare thing, especially full loss - no tintinitis.

Thanks if you read all this,Love,

Sandy

OMG 1012
Posts: 61
Joined: Dec 2012

I am so sorry you are going through all this, Please know you are in my thoughts and prayers that all will be OK XO You never know what will happen to your body after cancer strikes---I am learning this now and trying to take extra special care of me! 

 

Marynb
Posts: 1134
Joined: Aug 2012

I do hope that you feel better soon! The way you describe your condition when you arrived at the hospital reminds me of a friend of mine. She was on several medications, including pain medications, anxiety meds, etc. After many doctors and many tests, she finally listened to me and got of all of the medications she was putting into her body and she got well pretty quickly. I don't know if this applies to you at all. I do hope that you feel well very soon!

Phoebesnow
Posts: 448
Joined: Apr 2011

I'm sorry that you have had this experience.  Try to stay positive and think of all the things you have overcome.  You will be back to feeling better soon.  I know it's hard to be knocked down again and again. You will get back up and get better as you have done before.  I always think of you as having a positive, sunny attitude.  

Mary might be right about stopping these medications.  My mother and my husband were after me for a long time saying it was the medication that was making me sick.  They were right.  If I had listened to them I would have improved a lot quicker.  It's worth a try.  I even gave up my inhaler.

I hope you improve by leaps and bounds and soon feel like yourself.

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

No I was on nothing but sudafed at the time and the Lyrica that I have taken for many years now with no side affects. I am planning to take anti anxiety medication when it is offerred to me.

I found after considerable research an interesting article: This virus that causes this infection or inflammation, I believe is HPV.

Abstract

INTRODUCTION:

Human Papilloma Virus has a strong relation to oropharyngeal mucosa and is considered to be responsible for a wide range of upper respiratory tract pathologies, like laryngeal papilloma. There's a hypothesis, that it plays a significant role in middle ear chronic inflammations and neoplasm's.  .   .

CONCLUSIONS:

The results has been compared with other authors examinations and it is claimed that they confirm the observation, that Human Papilloma Viruses may be a factor, that might play an important role in pathology of chronic otitis media and ear neoplasm's. It is concluded, that differences in percentages of HPV presence in chronic inflammations (70%) and ear neoplasm's may be explained by viral co-infection during bacterial c. o. m. Viral infection probably evolves carcinogenesis, which leads to a neoplastic growth.

 

Why isn't more reported on the dangers of the HPV virus? This information did not come easily. I feel very rattled by this particular ear issue this year. I think all cancer patients are sort of looking in the rear view mirror thinking it's coming again, it's coming again!

Love,

Sandy

 

 

Marynb
Posts: 1134
Joined: Aug 2012

Wow, that is interesting and scary. I hope they get to the bottom of what is making you feel sick. Stay strong and keep the faith! There are so many things that upset our body chemistry, I hope they can diagnose it correctly.

pializ
Posts: 275
Joined: Nov 2012

Almost r years ago I woke up one Wednesday morning to find I had completely lost my hearing in my right ear. I didn't have all the other symptoms you describe. I was working in a GP practice at the time and the doc thought it was due to the effects of a cold, although I hadn't had one. she said it looked congested behind the ear drum. Anywaym to cut a long story short, I was eventually diagnosed with sudden sensori neural hearing loss. (SSNHL). I was lucky, I recovered high tonesm but hearing is difficult in crowded places or being on the phone if it is noisy. They found no reason fot what happened, butit is crucial that treatment takes place within 21 days or the damage is irreversible. Well, after seeing the doc that Wednesday, it was almost a month before I sought help from my own gp. I guess if I had other symptoms too, then I would have done it sooner. SSNHL can be responsible for symptoms you describe. Not many are aware of it, so google it and make them aware. I just want you to get timely help. Take care . Liz

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

SSHNL is often discovered upon awakening but that was not the case with me. Also it usually follows a cold and I didn't have one either. The sudden onset of Vertigo coupled with the complete profound bilateral hearing loss is more often of vascular nature, the doctors frankly told me but like you I may never know. I am so sorry your hearing did not return fully. I am so much more sympathetic to this handicap now. My mother in law has deafness issues.

As a lover of accoustical music who walks out of movies when they are too loud, I find this amazing that I have this hearing loss but I guess it is good I protected them. One has to do the work for two now! I am accepting this situation as likely permanent since that is what the doctors prepared me for and will be grateful, if like you, some of it returns.

In any event I have a bad virus now, which they treated me for with the Prednisone and antiviral medication. It dropped into my throat and upper bronchial area and I already had an appointment prescheduled with the Pulmonologist for tomorrow since I this virus is perrenial in nature we know I will be sick about now and just plan for it. I have a spot on my lower right lung we are also watching.

Sincerely,

Sandy

pializ
Posts: 275
Joined: Nov 2012

I think it is good that we take most things for granted.....until we lose things or are compromised. However, I think you have had more than your fair share. It took me a while to know it wasn't an acoustic neuroma causing my hearing loss, & it was a worrying time. I am now used to it as we learn to adapt. I am, however, very glad that I was brought up with good manners and often, well, very often, have to say 'pardon, could you please repeat that as I didn't hear you' Lol! . Sometimes I just zone out if too much is going on. The problem I have with 'ideopathic' is that I can do nothing to stop it happening again. there are some gadgets that can help bounce hearing from the good ear to the bad, kind of equalizing sound. I hope you are feeling somewhat better & that steroids & antivirals are doing their work! Hope the lung spot is insignificant. 

Best wishes from the other side of the pond, Liz

mp327's picture
mp327
Posts: 2977
Joined: Jan 2010

Reading your post, I was overcome with sadness.  The hearing loss has to be especially difficult for you, as someone who sings professionally.  I am so glad, however, that there is no evidence of a brain tumor.  The info you posted below on the possible link between HPV and these type of ear problems is quite interesting--and scary. 

I hope the Prednisone will give you back your hearing, if not all of it, atleast a good percentage.  I have had bad hearing for years and it really is quite frustrating, but I can imagine moreso in your case.  I believe mine to be related to too much noise--in my younger days I couldn't get music loud enough. 

I think your case demonstrates the importance for all of us to take the best care possible of our immune systems.  I know you've been trying to do that and I'm sorry that somehow this virus has sneaked up on you, despite your efforts.  You know you can come here anytime to air out your frustrations--we will always be here to listen.  I'm glad you are also seeking professional counseling.  I wish you the best with the P.T. and hope that it will help you with the vertigo. 

I will definitely say some prayers for you, my dear friend.  Please keep us posted and take care. 

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

As an accoustical musician I've never really liked amplification and walk out of movies when the sound tracks are too loud. I witnessed my father lose hearing as a band director in small music rooms with poor accoustics and student instrumentalists playing loudly all around him for years. I look in horror at people who have their ear plugs in and I can hear their music across the noisy subway cars. There is a healthy and then an unhealthy decibal rate. We just think we will have our organs and health forever when we are young. And the musicians that play today even in their training seem to believe louder is better.

I am not hoping against hope to get this hearing back. I am accepting this one day at a time for what it is. The doctors informed me I will not likely recover it. But if I do I will surely be happy. I can still sing - I just have to keep my ensembles to my right, which is usually the way we work anyway. I watched some of Aida on Public TV today though and felt some grief at my loss of hearing it with both ears. Some of this loss will be felt in waves

What dear friends we are to each other!

Sincerely,

Sandy

 

 

 

qv62
Posts: 296
Joined: Nov 2012

Just added you to my prayer list, I hope you are feeling better, keep us posted

LaCh
Posts: 514
Joined: Dec 2012

my thoughts...

Really.

Lorikat's picture
Lorikat
Posts: 561
Joined: Jul 2011

Sandy, I KNOW meds are not always good for you....  HOWEVER I gave in and am now taking Lexapro, prescribed at MDA.  It has made a Hugh difference in my acceptance and handling of things.  I have a blind spot in my right eye apparently caused by a mild infarct.  Sp?  Kind of TIA or small stroke..  And I have no real knowledge of when it happened.  I am always wondering "what next"! 

 

I also see a counselor at MDA every three months when I go for ck ups.  Have tried to find one locally but they don't understand what we have all been through and that makes it hard to talk to them, so I gve up.  I guess what I'm saying is, whatever helps you keep it together while you heal.  Many ((((hugs)))) and prayers.  Lorie

Phoebesnow
Posts: 448
Joined: Apr 2011

Thank you for this valuable info.  I have never tested positive for hpv.  I still believe Ihave it.  I remember the virus that gave me hemorroids and uti in my 20's diagnosed with stage 5 precancer of the cervix at 24.  I have had several flare ups leaving me in bed for up to six months at a time since tx.  I believe this hpv attacking me.  Next time I have an attack I will take the test again.

 

All the best sandy and know we are here for you whatever it is.

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

I think hpv diagnosis perhaps is very slippery. My ear issues went through me so quickly to my chest and lungs that I just wound up thinking it wasn't as important as evidently it was. That's why, I believe, the Pulmonologist has never identified the autoimmune problem he suspects. I am hoping since I was at a highly competent ear doctor's office who ran viral and autoimmune illness blood tests as within a day and a half of feeling any fullness in the ears, we will get closer to solving the puzzle. I hate idiopathic things! I would like resolution. Who would ever think you would have hpv in your ears? My draw dropped when I read that.

Can you imagine how many undiagnosed cases there must be out there? Oh, gosh, there goes that paranoia again!

Sandy

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

Interesting that you had that tia. Do you have high blood pressure? My vitals are amazing. my blood pressure ranges 90 to 107 over 60-68. Well I am on Lyrica for neuropathic and fibrotic pain so I have avoided with my Physiologist's recommendation adding any other chemicals so even though most of us on this board have used an antidepressent, I still have not. But that doesn't mean I won't do what is best for me now. I have to say, though, seeing all of your responses today gives me probably more than anything.

But the Lyrica dose is way down from what it was earlier and that it could have been causing the swelling in my legs was ruled out also after I went off of it completely slowly for a while, during the PT. Finally the lymphademist therapist said she thought I should go back on it since I was obviously in pain and she had ruled it out as a cause. Last time I was at the physiologist and told him I was taking between 200 to 300 miligrams a day he said to just stay with 300 1 in the morning and two at night.

Bless your heart for all you have gone through. Didn't we both lose our mom's about the same time too on this board? Go through cancer treatments amost at the same time? Wow, you never know how you will meet your true friends, do you?

Fondly,

Sandy

 

Lorikat's picture
Lorikat
Posts: 561
Joined: Jul 2011

Yes we did lose our Moms and fight this cancer at the same time..  But here we are!

i remember waking up really dizzy and feeling unstable one morning and asked my hubby to drive me to work because I felt I would be a hazard on the road.  I felt that way for several hours, then felt fine.  I was trying to balance out the monthly reports a couple of days later and realized I couldn't see the middle numbers with my right eye.  If the number was 34567. I would see 34--7.  This was just before my cancer dx, was still being treated for diverticulitis.

I STILL feel as though I have been pretty lucky..

my blood pressure is usually 120/70....no reason ever found for TIA.  Have compensated for blind spot and really don't notice it now.  I DO REALLY hope your hearing comes back through.  Also like you I truly dislike loudness.  I keep ear plugs in my purse just in case. My kids ask if I can even HEAR the music/tv when they come over, and I ask them if they can still hear after having theirs so very loud!  LOL.  Blessing from the desert.  Lorie

 

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

Thanks for your response. The similarity of our lives is almost uncanny.

Thank you. Many people have indicated it was a tia, including four doctors. I had never heard of such a thing until now.

I have diverticulitis also as does Martha. Is this just because we are OLD or something? lol

I have heard of many people who go through health crises one after another for a while and then are healthy for many happy years. I hope that happens to all of us here.

Love,

Sandy

 

mp327's picture
mp327
Posts: 2977
Joined: Jan 2010

I'm not sure what causes diverticulosis, but I'm pretty sure age is a factor. 

I had another attack of intestinal blockage last night--it nearly sent me running off to the ER again.  I was up most of the night with chills and excruciating abdominal pain, along with vomiting, which relieved the pain as soon as my stomach completely emptied out.  Oy!  I am putting myself back on a soft/liquid diet for a few days to see if I can keep from having another episode.  It's so frustrating. 

My point in telling all of this to you is that, even though I'm having a different kind of attack, I understand your frustration and the constant fear of not knowing when it might occur again.  Take care my sweet friend.

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

My grandmother had diverticulitis and she suffered with it for a long time. The diets, etc. are all still a bit controversial. In her day, they put her on strictly low fiber, bland. Now they put me on high fiber, (psyllium husk - not cabbage or broccolli) but I have never had a blockage (knock on wood). I cut out dairy though. (Uh, I did for a while, I mean, since this ear thing happened, all bets are off and I just had some vanilla ice cream left here after a recent party - boy was it good!)

Seriously, I've been reading a lot about cassein and think it is a much bigger issue than lactose.

Are any of these diseases we share related to our disease or cancer in general? I find it amazing so many of us have so many similarities.

Take care of your good, kind, precious self.

Fondly,

Sandy

mp327's picture
mp327
Posts: 2977
Joined: Jan 2010

It's very interesting that you were put on a high fiber diet and I, like your grandmother, was told to follow a low fiber/liquid diet.  The surgeon I saw recently said the thinking has changed somewhat regarding diets and diverticulosis/diverticulitis patients.  He said that people used to be told to avoid such things as nuts, but now they are not restricted.  I don't get it!  Way too confusing!  The diet I had to follow right after the intestinal blockage seemed to include a lot of dairy, such as yogurt, puddings, creamed soups, ice cream.  I will have to do some searching for articles on cassein.  As to your question, I don't have the answer.  I think as similar as our symptoms are sometimes, we are so different in other ways.  Like I said--confusing! 

Hugs!

Marynb
Posts: 1134
Joined: Aug 2012

Hi Martha,

I am sorry you are still suffering with this. I am wondering whether your insurance would pay for a dietician? The diet you describe with ice cream, creamed soups, puddings, is a very high fat, high sugar diet which would have me in intense pain. I have never heard of a doctor encouraging a diet like that at all. As we age, our bodies are less able to break down fats and excess sugar is never good. The diet you describe would make me very, very sick and cause me a lot of pain. Have you tried soups with some vegetables well cooked?

My health insurance company paid for several visits with a registered dietician so I could get my diet stabilized after treatments for this cancer and major abdominal surgery for the second surgery. I still have to tweek from time to time.

I hope you feel better very soon!

mp327's picture
mp327
Posts: 2977
Joined: Jan 2010

The soft/liquid/low fiber diet I have mentioned is only intended to be short-term.  I have been advised to follow it for only a few days after an episode of intestinal blockage.  It is a diet that allows the bowel to "rest," as it was described to me.  I can eat creamed soups with well-cooked veggies, but apparently NO broccoli.  That's the one veggie that repeatedly gives me problems.  From all the reading I've done, apparently even whizzing such veggies in the blender does NOT change their fiber content.  The other food that caused me problems, as near as I can tell, was steak.  I rarely eat beef, so I'm just saying "no" to it from now on.  Otherwise, I am eating most foods.

Thanks for the well wishes!   

Phoebesnow
Posts: 448
Joined: Apr 2011

I have the diverticulitis also.  Hmmm!

 

i hope you feel better soon.

AZANNIE
Posts: 390
Joined: Mar 2011

After my recent colonoscopy I was told I have diverticulosis. I had a colonoscopy pre treatment and I didn't have it so I'm blaming it on radiation frying my innards. It hasn't bothered me so far - knock on wood. Only have one "pouch" and hope others don't form.

Ann

sephie's picture
sephie
Posts: 537
Joined: Apr 2009

hey ,  i went to a counselor at MDA but my Blue cross did not pay for it so i cancelled my next appts.  because i have a very high deductible and high premium... i hate to say how much it is because i feel foolish that so much of my $$$ go to blue cross......MDA is fighting it but just the cost of the room she used is $748---ridiculous to sit in a chair and talk to someone.... of course, there would be a discount to Blue Cross but i hope if i have to pay it that i will get the discount also.....sephie

Lorikat's picture
Lorikat
Posts: 561
Joined: Jul 2011

Sephie...  Which blue Cross do you have?  I have Federal blue cross/blue shield and it paid for my visits to the. Counselor which resulted to my going to the fatigue center there.  I KNOW I am very lucky to have the insurance I have..  

sephie's picture
sephie
Posts: 537
Joined: Apr 2009

i have blue max which is the very high deductible ( cheapest policy  offered to individuals).....i am blessed that i have a hubby (64 years old ) who is still working and can pay for it ...but i am disappointed that they will not pay ......what a mess.... and i have received a notice that my premium will increase due to Obama care....... ugh.....sephie

lp1964's picture
lp1964
Posts: 856
Joined: Jun 2013

First of all i want to send you my greatest support and I hope you feel better by now.

The way you describe it, it sounds to me that all this had a source in your brains: either a mini stroke (temporary obstruction of a blood vessel) or a seizure.

The temporary weakness of your limbs, the vomiting, the speach problem, the hearing loss all point in that direction.

Maybe should ask your doctors about these possibilties. Untill then take it easy. (that vacuum cleaner is not going anywhere ;) and do some relaxation and breathing exercises.

Love,

Laz

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

Laz

My Internist and Physiologist agree with you and the Ear doctor also believes those symptoms more in line with a vascular occurrence. Now I have a wild perrenial virus going on, an old enemy but much better intelligence and help in fighting it this year.

It's so sweet of you to have answered on this board - How do you do all you do so soon after your treatments?

Please take care of your good kind self.

Sincerely,

Sandy

M1234
Posts: 17
Joined: Oct 2012

Hope you are feeling better! Your experience sounds very scary.

I have had ear and jaw pain for years(!) that no x-ray or dental professional has been able to explain.  Even had a 'good' tooth pulled - almost came out of the chair at the oral surgeon when he stated - "Hmm...looks like a good tooth...".

Ct Scans and MRIs over the years have also reflected...nothing???

Could this be the HPV virus moving around in my body causing one issue after another? 

I have had spells of dizziness since treatment concluded and I have become more active.  Have even fallen several times.  But, I have chalked it up to the Gabapentin (1800mg per day) and the loss of reflexes in my legs.  Maybe it is all and or a combinations of the virus, the drugs, and the loss of physical abilities.

It will be interesting to see if others are having ear/jaw/head/neck pains and what if any activites and or supplements have sucessfully helped.

Wishing you the best Sandy.

 

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

I felt a fullness. I haven't had any pain. Three doctors suspected that it seems to have been vascular, instead of tumor or other origin but no trace on MRI of anything so it remains idiopathic.

I have had TMJ during different high stress periods in my life and that can cause jaw and ear pain. I have to say though, I was really feeling good until this happened. My part time job is finished for the summer and I was planning on attending a Yoga spa this summer. Now I don't know about Yoga but I practiced Tai Chi this morning with satisfying results.

We don't want to be too paranoid about this HPV virus but I personally believe we have much to learn from it and it is mostly stuff most people don't want to know. There is a lot of controversie about Guardasil and one of the controversies is hearing infection and hearing loss. That's how I got to the HPV site.

Make sure you watch anything that is constantly or periodically inflamed since cancer is an inflammatory disease. That's my best suggestion.

Thanks for your well wishes.

Sincerely,

Sandy

eihtak
Posts: 857
Joined: Oct 2011

It is so difficult when you think you are doing everything right and being so pro-active in living healthy and then something like this happens. I will keep you in my thoughts and prayers that things turn in your favor quickly.

Our vascular system and inflamation are responsible for many health problems, I am with you on watching out for chronic related conditions. I also believe we have only begun to see the effects of HPV and often find when talking to people most only, if anything, associate it with cervical cancer and are surprised to hear more. Knowledge is power and there are far too many powerless on the issue of HPV.

Feel better.........

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

Although anal cancer is rarely mentioned, as a rare cancer or any other kind, HPV is now being mentioned increasingly often as a major cause of a new "epidemic" of throat and oral cancer......so many symptoms can mask and manifest in different ways before tumors actually become observable...and once we have HPV, it is in our cells forever, like chickenpox, and can then grow into another disease just like chickenpox ----> shingles. I'm sure you are on top of your condition, but I wouldn't dismiss it or go in the psych direction....you have genuine reason to be concerned and are an educated, experienced consumer of health info. Keep researching and thanks for sharing your story as I had no idea of such HPV consequences, and now I shall be more alert. I am still on my Vit C intravenous track as there is a lot of research on the anti-cancerous effects of Vit C IV, and anti-viral effects....but only IV...check out:

Linus Pauling, Nobel Laureate, & Ewan Cameron, "Cancer and Vitamin C" Camino Books, 1993, Amazon

Thomas E. Levy, MD, JD, "Primal Panacea", MedfOX pUBLISHING, 2011, AMAZON 

Be aware that traditional medicine, with Big Pharma, does not accept Vit C research as legit, and only Integrative/Alternative Medicine MDs, like Dr. Andrew Weil, administer Vit C IV....it's an option I am investigating even with >> cost, as there is nothing to lose except $$, which at this stage of my disease hold litle meaning. good luck.

jcruz
Posts: 242
Joined: Jan 2013

I will keep you in my thoughts as I do all of you here.  It just breaks my heart when any of us end up with even more health issues beyond this cancer.  I hope you will get answers from doctors and will be on the mend soon.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

So sorry to hear about this Sandy. I know what you mean about always looking in the rear view mirror. It's the things we don't see coming that are so upsetting. I hope things get better. I'm keeping you in my prayers.

Phoebesnow
Posts: 448
Joined: Apr 2011

I have had this since my 20 s.  I also have what I call first bite pain.  Whatever I eat the first bite of sends excruciating pain thru my teeth and jaw. Like an explosion. All the other bites are fine.

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

What you are describing I feel certain is TMJ from teeth grinding or clenching at night. I used to have that too. Fibromyalgia also can come from this some say since if we are clenching your teetch you are probably also clenching other muscles as well. This is why fibromyalgia stems from sleep disorder. I would start getting help for this. How annoying! I had a couple of mouth guards though and my dogs ate them! $700 a pop! I still have two dogs who can sniff out anything that smells like me. They eat right through the case and it's hard to keep anything I use late at night and early in the morning so well hidden from them. 

I know I sound like a commercial but I would specifically visit your doctor about this and ask him if you could have a sleep disorder?

Sincerely,

Sandy

 

 

 

mp327's picture
mp327
Posts: 2977
Joined: Jan 2010

Although it's not funny, I had to laugh when you wrote that your dogs ate your mouth guards.  I have two cats and my male cat is a chewer.  I had laid my mouth guard on the nightstand one night because it was giving me fits in the middle of the night.  I found it the next morning under the bed with one end chewed off!  I have suffered from teeth grinding for many years.  Sometimes when I wake up in the morning, I feel like I've been eating taffy all night, as my jaws are so tired.  It's very interesting that bruxism can lead to so many other things, including fibromyalgia.  That's the first I've heard of it. 

I am keeping you in my thoughts and prayers, Sandy.  I know you are having some difficulties right now and I hope you and your doctors can find a way past them.

Lorikat's picture
Lorikat
Posts: 561
Joined: Jul 2011

Not funny but I had to laugh!  I have had the SAME mouth guard for a couple of years now!  I leave the top drawer of my nightstand open an inch or so so I can drop it in there if it is bothering me too much!  I have been a tooth grinder most of my adult life!

Sundanceh's picture
Sundanceh
Posts: 4300
Joined: Jun 2009

Your story sounds too eerily familiar to me...

Nine years ago, on my very first major surgery, I was at home recovering.  One night I went to bed and things seemed fine.  The next morning, I woke up and it sounded like the cross between a boat motor and being in the bottom of a swiming pool and just hearing that 'glug-glug' kind of sound.

Nothing like that had ever happened....

I'd never had vertitgo before either...the first time I got it, I truly thought I was going to die....I had no idea about its existence and it hit me like a pallet of bricks.....head spinning on a swivel....profuse sweating from top to bottom....and extreme nausea like a bad carnival ride...and having to lean and fall into walls to move around.

I was by myself the first time it happened...

Anyway, for awhile I had it tested, but could never reach any definitive conclusion.  Years later, the concensus is that mine is not Benign Positional Vertigo.....rather, they think it is Meneire's Disease. 

At one time, I suffered what seemed to be almost complete hearing loss.  After all of those first noises settled down (don't remember how long) they were replaced with silence.  I could still technically hear, but it was very low and not audible according to the results of the hearing test.  Any sound I could was faint and garbled. 

I had also read that once you lose hearing, that its permanent and never returns. 

There are days when I hear well out of that one ear...and other days when it's really compromised.  For awhile, when I couldn't hear, I learned a great trick.....when anybody says anything to you......just nod, wave and smile.

You wouldn't believe some of the looks I got:)  No telling what I was saying yes to. 

It is very debilitaing and very depressing.

Right now, I still suffer vertigo attacks.....they come in waves and attack in clusters....some of the spells are mild and last a few hours.....some of the more severe ones have lasted me up to 28-hours to let it run its course.

I've had to be carried out of work one time, because I could not hardly walk a step or two on my own....it's horrible and it makes you feel so vulnerable....more than just the physical handicap, it's the mental handicap that messes with you.....just worrying on where it will strike and what would you do if you needed help.

I had it strike behind the wheel while driving, talk about terrifying.  And every eye movement and every turn of the head just spins you on your axis - you just can't seem to find the center of things.

Mine comes in goes in spurts...on a year....then off a year or so....and then bam.

Meds don't seem to help....only seem to aggravatge the situation....dramamine and dizzy patches etc.

Menire's Disease is permanent.....it ususally attacks just one ear....but can affect both.  It keeps coming and vertigo keeps happening until the nerve is dead.....and you go permanently deaf in that ear......then the attacks stop. 

As you said, I rely on one ear....and anything I get out of the other is gravy....always feels like there is cotton stuffed in there....just that full feeling you mentioned.

I guess I'm just saying that I understand what you are describing - and am very sorry - as I understand completely all of the moods, the thoughts, and particularly the feelings you are feeling about now.

I sing too (not professionally), and it does rob some sense of the enjoyment...I can image as a profession, it would be far more hurtful. 

And the doctors concluded, that alot of this could have been brought on by all the drugs I was taking in the hospital after surgery....as you mentioned, perhaps it started out as vascular for me too, just the docs didn't know what to do - or where to look.

But, it was Night & Day....just like you said.

It's weird about the vertigo how it throws your entire metabolism out of whack....it seems that the more severe the episode is, that once the spinning begins, your stomach goes one way, while your head goes the other....and almost with certainty, we seem to have to throw up and have a bowel movement at the same time.....no easy feat:)

You're not alone with these feelings...and I know there are many more bubbling just under the surface....but perhaps, we can talk about those another time:)

Take care, Sandy....and good luck....I hope some measure of hearing returns for you. 

-Craig

 

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

I read where Meneure's disease is the most anxiety and depression provoking diseases you can have and that's why I called for extra psychological support, the sudden onset dizziness was and is much worse than the hearing loss. But I am too sick with a virus right now to do much about anything but rest.

The sudden onset hearing loss is not usually the way Meneure's comes on but I believe I am at risk for it in any event. Time will tell. Thanks for sharing. Do you have a significant other who has helped you through this time?

It is hard knowing I can't take the cotton out of the ear like you said. Really annoying. My car is still in the parking lot where I left it, but again, I am pretty sick with a virus.

Fondly,

Sandy

Sundanceh's picture
Sundanceh
Posts: 4300
Joined: Jun 2009

My wife is all I've physically got whenever I have been too incapacitated to drive home.  She works full-time too on different shifts, so when the spells are frequently happening, it can be very challenging. 

Many was the time she had to leave her work and come and get me and drive me home and I'd get in bed until the next day.  I'd have to leave my car at work and then put her out the next morning to take me in to work, where I would pick it up....IF I didn't have another atttack that day.....and if it happened on a Friday, we'd have to come back over the weekend.  You see the parking lot empty and your vehicle there.....and you know, it makes you feel funny in some kind of a way.

I've had cancer 3x now....and am pending results that should verify that my 4th recurrence is present....this has all been in 9-years time.  I've beaten so many odds and rectal cancer is so very difficult to get ahead of....much less try and stay ahead of....

But, then this Meneire's thing with the severe vertigo...it makes you forget completely about cancer.   It can make one feel very vulnerable...and then that vulnerability lends itself to eroding our self-confidence...which then manifests itself into the fear that the vertigo will strike anywhere - and at any time - and catch us where we have the least amount of help available. 

It really does paralyze you...

That was one of my biggest worries.....I'd go to work each day and many days, I'd get an another attack and have to leave again....it would happen 2 or 3 times a week.....sometimes, you'd just take one step forward or something...and bam...hello vertigo......other times I'd just be reading my CRT monitor and then you see things going gaga....and you think not again.....

But, it's already too late.....

I'd be driving home with my head out the window and throwing up and you know what happens there.....makes you feel so puny to not be able to control bodily fluids.

Hearing loss stinks too.....but the fear of a vertigo attack.....and where you would be if it happened...it's exactly what you said. 

I remember for awhile I lost the hearing in my other good ear.....and when you are driving or just walking into a store, it's amazing how your sensory perceptions change when you can no longer hear.  You become sight driven, which is so different and I found my head was always on a swivel trying to make up for the loss of my hearing.

I'm sorry you're sick, Sandy...I hope you get better soon.  I do the best I can...and am in a period where vertigo is not present. 

The only thing that might or might not help is to limit your sodium intake (if it's high) and you can take a water pill to drain off extra fluid.  But, I have to be honest with you....when vertigo was there...it was there.....and stayed as long as it wanted.....and the medicines had absolutely no effect in combating it. 

I can understand you wanting to talk with someone about it....

For me, it was sometimes just the simplest of movements.....taking a step...or reaching for a glass......or just reading the computer.  That's what was so infuriating, something simple like reading and bingo....

I always feel a sort of 'instability' in my eyes when the attacks are there....sometimes I'm on the edge....like I'm one step away from a full blown attack, but not quite.....sort of unstable in my gait and sometimes having to lean on something.....you can just feel it in the back of your eyeballs.  It's that feeling you're not standing on a hard surface.....just sort of that wavy gravy feeling.

I was never sick before my cancer.....since then, I've had to go through many life changes...and then I just try and use my experiences to help others like you who I see are going through the same thing or very similar.

That helps me live with it.....I know you just want to lose your mind.  If it is Meneire's, it will go away at some point, but hard to know when.  It comes when it wants....stays as long as it wants.....and then disappears as quickly as it arrived.  And then at some point in the future, you are revisitied with it. 

I've found over time that the attacks seem to be more intense.....and last much longer than they used to.  Pretty much when they hit me, I get home and fall into bed and 'sleep it off.'

Be well, Sandy...wishing you the best....nice talking to you today.  I'm still meeting some of you over here when I stop by.

-Craig  

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

I related to so much of what you said and the way you said it was very healing to me.

There is nothing like having the support of this site. I was apologizing for how crazy I felt when this started and now I have gotten to feel more sane and even had some good laughs (mostly about the dogs eating the mouth guards). But I loved your "swivel head" remark too and got a good chuckle out of that one. No wonder we are dizzy trying to figure out where the sounds we here are coming from. I noticed this especially in the doctors office when someone would call my name and they could be standing to my left and I would turn all the way around to find them, following the sound in my right ear to where they eventually were.

My doctor said Monday, "I know it's discouraging, Sandy but you need to come back in six weeks and four months." His computer can tell when I am going to have these ear to asthma/lung problems, prednisone to antibiotics. Managing chronic illnesses is the price we pay for still being alive though and Life still is beautiful when I remember to count my blessings.

Try not to be hard on yourself for being ill. That's not easy but it is necessary. Being sick is not our fault. It's just life. Thank God your wife is there for you and my husband.

Sincerely,

Sandy

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

Failed the hearing and dizzy tests. My doctor who specializes in hearing and balance disorders again came out of OR to put in another Prednisone shot directly into the ear. (It hurt more this time, probably still bruised from last week's). This seems to be his only hope, aside an act of God or just by chance my hearing will return in that ear even a little. I am scheduled back again in another week for another hearing test and if I fail it again, another Prednisone shot. He says no driving until a week after symptoms of dizziness are gone and I failed the dizzy test completely today.

The diagnosis, although the symptoms do not completely support it, is Labrynthitis. This could change. Apparently it is very rare to come on and behave in this way but there is really nothing else to call it but that right now. He was convinced from the start this has viral roots. Blood tests came back normal except low white blood counts.

Thanks for everyone helping me through this. I go back in a week for more tests and probably another prednisone shot. I'm just in the process of healing again.

Fondly,

Sandy

mp327's picture
mp327
Posts: 2977
Joined: Jan 2010

Please take care and keep us posted as you continue to seek answers and treatment for these issues.  You are in my thoughts and prayers.

Lorikat's picture
Lorikat
Posts: 561
Joined: Jul 2011

 Prayers, Sandy...

 

Marynb
Posts: 1134
Joined: Aug 2012

Ouch. I am so sorry you are going through this. Hopefully, there will be an act of God! I am hoping you get complete healing very soon!

sephie's picture
sephie
Posts: 537
Joined: Apr 2009

prayers for you.....so sorry for all of this after tx mess........ sephie

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

I found a connection between 5Fu and hearing loss, balance issues. The academic writing was way over my head to read, of course but I guess there could be some connection with the neuro transmitters up there getting zapped.

All those scientists writing these amazing papers and that was the best I could do to sum them up. lol.I like to do as much informative reading as I can, but my doctor is a specialist in this field and head of the department at Mt. Sinai so I should just relax and finish reading my summer mystery novel.

But it's good we share these things, there are probably a gadzillion possibilities (another highly intelligent remark!)

All the best,

Sandy

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