Off topic - sorry - except psychological stuff
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
Comments
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Sandy
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!0 -
SandyMarynb said:Sandy
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!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.
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I wishMarynb said:Sandy
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!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
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Hpvsandysp said:I wish
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
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.0 -
SandyMarynb said:Hpv
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.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
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Sandy
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.
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NOT off topic..at least in my opinion!
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
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Dear Sandy,
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
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SandyLorikat said:NOT off topic..at least in my opinion!
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
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.
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ear pain
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.
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Jaw painRoseC said:So sorry to hear about this
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.
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.
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No painM1234 said:ear pain
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.
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
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Yespializ said:Sandy
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
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
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InterestingLorikat said:NOT off topic..at least in my opinion!
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
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
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Thankslp1964 said:Dear Sandy,
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
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
0
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