Off topic - sorry - except psychological stuff

sandysp said:

No pain

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

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.

sandysp said:

Interesting

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

 

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

mp327 said:

Sandy

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.

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!

sandysp said:

Thank you

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

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  

Phoebesnow said:

Sandy

I have the diverticulitis also.  Hmmm!

 

i hope you feel better soon.

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

sandysp said:

So sorry to hear

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

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!