Checking back in.....TN Update

[tonyad]

Hi Friends......
   i am sorry for not checking back in.....i am still reeling (sp) from this pain.
While the "Coming and going" is not near as bad as it was the other night.....I am still having the TN pain!
  
   really feeling it over right eye and right ear area both in front and back.
(back mainly right behind but just on top of ear area,.....I am still very sore feeling between episodes throughout the day.

OPHTO Update Too;....
    went back to Optho..(please remember I am dealing w/ TN right now and IOP.......Optho says one has nothing to do w/ the other) Does agree w/ other docs that I have a true case of TN...I knew that!   .Pressure still very elevated but says from what he can see in side of eye (something about cells or something?) he does not see that in which it would indicate Glaucoma.....here is the WEIRD thing (tell me what you all think or have heard) he did say that with having an Autonomic Dysfunction the CNS does play a part in eyes and pressures.....He is wondering if this is my case.......I have not googled any of this becasue I am just to tired and me Freaking face / head hurt.

     If anyone knows anything about this please tell me......He also said that just by having MS things can just "Whack Out" in the eyes......He certainly feels that this is the case w/ the loss of my Peripheral vision.

     Anyhow, I have D/C the one drop and he now has me on (1).. 3 times day and a different one only at night.

   i want to Thank each and everyone of you for truly caring for me. And all your notes and kind words as well as you sharing your personal info w/ me.  I Love you all....
~Tonya
OH Ya....
  Got all blood test back ACE = NORMAL  (YEESSS) No Sarcoid!
                                    Nothing was out of whack except Monocytes = 12.7...(Range 4.0 - 12.0) so Really NOT so
                                    elevated!
                                    B-12 = 820  (range 243 - 894
And she did a LARGE panal of bloodwork..checking about everything

[Ma_of_3]

Hey Tonya

I can so relate to the TN...I was put on neurontin for it which did help but was a bit zombified the whole time! Funny you mention IOP...I tried to explain that my eye felt as though it was bulging and on the mri, you know the pic where your eyeballs look like they are on stalks...I measured the circumference of the bulging one to the other and it was slightly larger but nothing of that was mentioned in the report.  I hope you get some relief soon and am intetested in any forthcoming info you may get!

Hang in there...u r not alone!

[Nancy T]

Hi Tonya. No, after my eye pressure returned to normal, he said back to yearly follow-ups. Anyway, I changed insurances so don't see him anymore (too bad, because I REALLY liked him--he took me seriously).

Thank you for the lovely compliment. From reading your posts, I would say the same thing about you! :)

Good luck handling the TN and getting your eye pressure back down. Take care of those precious eyes!!

Nancy

[tonyad]

   I am glad that your IOP is back down but I bet he still wants to keep a watch on you right? Like every 6 months or so?  Are you still on drops?

    Glad your weight went back to normal as well. And I am sure you are as beautiful and genuine as your heart is :)

     AGREED!  i was not ready nor will I ever be for this TN. I felt bad for people when they described it but still could not fully understand or imagine just how bad it was.....BAD!
Have an Awesome ans safe weekend!
~Tonya

[Nancy T]

Hi Tonya! I spent a few minutes Googling this, and some sites or studies seem to say there is an association between high BP and high eye pressure; some not.

However, you are right that high blood pressure can damage the eyes as well as other organs. I am not an expert, but I know high BP is bad, bad bad!

I thought it was rather a strange coincidence that I got a high IOP reading at a time when my weight had gone up 15 lbs., although I don't think my blood pressure went up concurrently. I guess that's why I asked my ophthalmologist. At my six-month recheck, my IOP was back to normal and so was my weight (normal for me... I'm always overweight).

Of course, as he pointed out, IOP can fluctuate a lot from one reading to the next, even at different times of the day.

In any case, keeping BP low is a good thing. Just not TOO low, as in your case!

I am so sorry you are dealing with TN pain. I had only one real attack of painful TN, and although the shocks lasted only a split second and only over a short period of time and weren't too numerous, I remember thinking at the time that if they had continued longer, it would have been unbearablly painful!

Good luck to you!!

Nancy

[tonyad]

  Hmm, That is quite strange that your Optho made a comment like that. Of course High B/P is NOT my problem but rather the opposite...Just so people should know though YES! Untreated high B/P can and does cause IOP and can cause eye disease and even blindness...So here you go.......You can google it!

High Blood Pressure & Eye Disease
January 12th, 2010

High blood pressure can cause eye disease. The blood vessels in the eyes can be damaged when a person suffers from high blood pressure. The impact is the area in the eye where images are focused. The tiny blood vessels that give blood to a person’s eyes are vulnerable to high blood pressure, just like other blood vessels throughout the body.

When high blood pressure is found in a person there are often changes in the eyes as well which can cause Intra Occular Pressure noteably.

  High blood pressure, if left untreated for a long period of time, can have a number of adverse effects on health. In such cases, high blood pressure affects the kidneys, heart and cardiovascular system, brain and the eyes.

Yes, surprisingly, hypertension may cause blindness. This however happens if the condition is left untreated over an extended period of time.

    This damage to the optical nerves may be caused due to the high blood pressure condition. This damage is done to these nerves if there is an excess pressure on the intra-ocular cells in the eyes.

  So there you have it.......
~Tonya

[muddlingthrough]

Hi Tonya,

My best friend has MS since 1985 and gets "attacks" of TN that are just aweful.  On more than one occasion, her doctor told her to go to the ER to get treated for the pain.  

I have added you to my prayer list and hope that you will have relief (lasting relief), soon.

God Bless,

Sheila

[Nancy T]

FWIW, my ophthalmologist said that IOP has nothing to do with blood pressure.

We weren't talking about autonomic dysfunction at all, though.

[Guitar_grrrl]

Tonya,

Sorry you're going through all this!  I've had TN, too, and I know it's no picnic!
Feel better!
Guitar_grrrl

[Sailorsong]

Yes I'm seeing an Opthomologist, I just can never remember how to spell it so I just put eye doctor.

Up until my heart attack in 95 my BP was always low as well. And even now my doctors have a bad times keeping my BP under control. Every now and then I will start to get very light headed and find that my BP has dropped real low (seen it as low as 96/65 ). My pulse also drops real low now and then ( seen as low as 42) . When it happens I stop taking my lopressor for a day or two until my BP gets too high again and then my lopressor brings it back down.

One other thing the drops for my high IOP also effect my BP. When I first started on the drops my PC had to lower the dosage for my BP meds,  Since the eye drops effects BP I can kind of beleive what you doctor said, but like you I am curious.

Dennis

[tonyad]

   Yes, I too thought it was quite interesting and can not wait to
find out if his statement holds any truth...I'm not saying that I am Doubting him...
But just curious I guess.......I can certainly understand how it "COULD" be possible....because one of the things the CNS does is control B/P...or in my case, is supposed to control...Lol

     So, my thought is ...Ok, so since it does control pressures perhaps it could be true.
He said that he has seen this IOP w/ out being Glaucoma in people w/ VERY HIGH B/P
But......Mine is opposite of the spectrum VERY LOW.  My Autonomic Dysfunction is (NCS). So he is thinking it is part of the Autonomic Dysfunction....Signals getting crossed?

    So, my friend w/ all that being said...I too can not wait to hear what we can find out and what YOUR Optho has to say....PLEASE let me know  :)    you are seeing an Opthomologist right?   Not an Optometrist (sp).

~Tonya
ps, Sorry you had to deal w/ the TN Dennis...It is Horrible!!! So glad you are better from the TN ;)

[Sailorsong]

That is very interesting what your eye doc said. Since I have high IOP I will be looking forward to what ever is found. I also have an Appt. with my eye doctor next week and I'll have to add that to my list of questions for her.

Dennis

PS I just went through a bout of TN last week but luckily it only lasted for about 36 hours.

Hope you are feeling better soon.

[tonyad]

  Jess and Ren,
Thank you ladies for the wonderful hugs :) and for thinking of me....

Jess:  
I hope your vertigo and feet are doing better.

  Ren...
Yes, Please let me know if you can find anything about the AD and IOP .

<>
~Tonya

[rendean]

I hope your TN resolves soon!  Glad to hear about the good labs.

Interesting about the autonomic function and the eyes, I'll have to check into it. If I find something I'll let you know.

Hang in there!

Ren

[lovemy6monkeys]

Tonya,

I hope you feel better quickly! ((hugs)), ((hugs)), and more ((hugs)), my friend.
~Jess

[tonyad]

   Thanks Lu :)
I too am hoping to get some relief.
i am also on prayer lists so I figure that is the Best Medicine!  <3

hope you are well and rested,
~Tonya

[Lulu54]

Yeah for no sarc!  Boo for continuing TN.

Hang in there - I hope it gets better soon.

-L