DavidH

I lived in Portland Oregon for some time. I agree about the weather...I had very little weather related problems. No heat stress..very little stress from cold.

I was 52...now 58

Mine are also toward the back of my head. Also feel as if fluid filled. Mine are also tender although not painful if left alone.

I also have get knots on my head. My wife says she can always tell when I am not feeling well by the knots on my head! I always thought it was strange and never thought anyone else was having this. My MY the things we learn here.

I have been taking pindolol for about three years. It continues to work for me. I have NCS, have for about five years. No side affects.

I have the same problem you have and have not found an answer yet.

I noticed something was just not right at 52. I was dia at 53 at the Baptist Hosp in Little Rock Ar. Very tough time in between. I have had very good medical care from the electro that dia me to the one I see now(finally got one in Bentonville) and the many other spec I have seen for related problems. I am somewhat stable now compared to the beginning. Cause? Who knows, at this point I really dont care. Day to Day and looking toward tomorrow...

Atenolol worked for about two years for me. Took me out of bed and back on my feet. Then just stopped working from one day to the next. But it worked very well when it was working. It kept my heart at a fairly even bpm. Blood pressure stayed up most of the time. Was a God send for me.

I thought maybe my problem was unusual, maybe not. My ENT just dia me with menieres. Classic sym. The treatment for menieres is just the opp of NCS.

No salt cut fluids. Crazy life. I have gotten the major sym of ncs undercontrol thanks to the meds. Now comes this insane menieres. I can without fail tell the diff

from the sym of ncs and the sym of menieres. I surely must have angered the Gods in some way!!

The only thing I have found to help my joint pain is pain meds.. I take them at night to get the rest we so badly need.

I dont get the headaches..thank you lord...

As most here know and you soon will its all a turkey shoot when it comes to the meds. But you have to give them a chance. Sometimes it will take quite a while before they work or maybe they will not work at all. You will need to get a very firm grip on yourself. You have a hard time ahead. Sometimes you cry sometimes you are full of life. Take control of your condition by that I mean be very active in its treatment. If it works do it if not let it go. Your caregiver will get down at times so dont forget to give them a hug and let them know how much they mean to you....and smile.....

That was one of my first symptoms. It was very disturbing to me. I thought that I was just not paying attention. But I would feel very drugged and unable to follow a conversation. I would then become very lethargic. I would get upset with myself. Thinking that I was somehow not being alert enough.

Ernie it was not just the girls that missed you....I enjoy reading your posts...keeps me sane...know what I mean?

I agree one hundred percent Thomas...Most people look at you and only see someone who looks normal. Try to tell them different and you get all kinds of looks and remarks behind your back....Only those who need to know...and then sometimes you need to be forceful....do not take no for an answer to some special need...I have asked for one thing and had to be very determined to get that. Its a wonderful life....

I take an acid blocker at least three times a week. It is one of my symptoms that I can at least control somewhat.

Yes, that is one of my worst complaints.

My TTT was much like yours in the time it took for me to recover. My Cardiologist did not allow me to pass out. I was also dx with NCS. really did not matter what the dx was just happy to know something.

Hello gang,

Here I sit in my hotel room in Rochester MN. BRRRR winter has come! Day two done...I am wiped out! Since several of you inquired as to what it is like to visit the great OZ..Mayo Clinic...here is what I did so far,

day 1: neurology consult / ANS exam and TTT with QSART/ began voiding diary

day 2: Thermoregulatory Sweat Test/ chest xray/ECG/ Echocardiogram/

I have tests and consults scheduled for the remaining two + weeks, and here, once you see a "new" doctor there is always a good chance you get a new test added to your schedule. It is good to have extra time for those important add on tests and it is up to me to try and crush these into less time if possible.

Schedule now reads: Sleep study/ blood tests/ pulse ox overnight study/ gastric emptying 24 hour study/gyn exam-to address any prolapse situations/24 hour holter monitor/ cardiology consult, and shock of all shocks..a consult with a pacemaker nurse! Who slid that one in??

I am tired and know that after two maybe three weeks I will have a clear picture on the status on the functioning /dysfunctioning of my body. The hard part is not going back to my main doctor to discuss for example why the pacer consult without even speaking to me first ? But hey, I trust he wants me to hear all the options and make an intelligent, informed choice. (I think I must be pro active and ask to see him at midpoint rather than at the very end) I know my heart went haywire on the TTT yesterday. I was really wiped out! My heart did a flip I had never felt before and THEY looked scared. I think it will probably be the cardiologist who will review the results with me.

Summary: I am sooo tried. The TTT was very difficult for me this time. The thermoregulatory sweat was not bad. My chest actually still aches from the TTT. But when in real life would we stress our body that way? It is a testing extreme.

I maintain if I slept better everything else would find a better balance. I don't have more to say right now. Ask questions if you want to know more!

best regards everyone

always hopeful and very tired,

tearose

Hello gang,

Here I sit in my hotel room in Rochester MN. BRRRR winter has come! Day two done...I am wiped out! Since several of you inquired as to what it is like to visit the great OZ..Mayo Clinic...here is what I did so far,

day 1: neurology consult / ANS exam and TTT with QSART/ began voiding diary

day 2: Thermoregulatory Sweat Test/ chest xray/ECG/ Echocardiogram/

I have tests and consults scheduled for the remaining two + weeks, and here, once you see a "new" doctor there is always a good chance you get a new test added to your schedule. It is good to have extra time for those important add on tests and it is up to me to try and crush these into less time if possible.

Schedule now reads: Sleep study/ blood tests/ pulse ox overnight study/ gastric emptying 24 hour study/gyn exam-to address any prolapse situations/24 hour holter monitor/ cardiology consult, and shock of all shocks..a consult with a pacemaker nurse! Who slid that one in??

I am tired and know that after two maybe three weeks I will have a clear picture on the status on the functioning /dysfunctioning of my body. The hard part is not going back to my main doctor to discuss for example why the pacer consult without even speaking to me first ? But hey, I trust he wants me to hear all the options and make an intelligent, informed choice. (I think I must be pro active and ask to see him at midpoint rather than at the very end) I know my heart went haywire on the TTT yesterday. I was really wiped out! My heart did a flip I had never felt before and THEY looked scared. I think it will probably be the cardiologist who will review the results with me.

Summary: I am sooo tried. The TTT was very difficult for me this time. The thermoregulatory sweat was not bad. My chest actually still aches from the TTT. But when in real life would we stress our body that way? It is a testing extreme.

I maintain if I slept better everything else would find a better balance. I don't have more to say right now. Ask questions if you want to know more!

best regards everyone

always hopeful and very tired,

tearose

I just read Lizzys post and I just get so angry at the Medical field for putting folks like Lizzy through such B... S... I guess I was just very lucky with my Doctors. I went from my MD to my Neuro to a Elip spec who sent me to an electrophy after detecting reduced blood flow to the brain during one of my altered states. I think some of you call it brainfog but I call it super brainfog. The spec gave me a tilt table test and that was that...no BS...no mind games.. Thank you God for sending me to the right people. It only took one failed try at meds and then the atenolol that worked almost immed....So please any newly dia folks reading this you know that you are not "mental" dont let anyone put you down for being afraid or for being confused or for being sick or for being depressed. Dont ever give up...keep looking for that something that will allow you to live almost norm again.

While reading the posts I always nod my head at a lot of the sym that everyone has. I also have many of those sym. An image found its way into my head of all of us together say at a party or some function....What a blast!!! No one would believe for a second that we were all sober....

Without a doubt Atenolol has made my life liveable. I drink lots of water(just cannot drink gaterade I hate the stuff) I try to get plenty of rest and not just sleep but rest during the day when poss. I have gone back to work full time but have to be very careful about overdoing it. I started with 125mg a day but am now down to 25mg a day. If I miss a dose of atenolol I have the same old sym within a very few hours. I still have breakthrough sym almost everyday but nothing like it was.

By the way I am 54 and was dia by tilt table only about a year ago, but have had slight sym(compared to how bad they did get) for many years.