MemberThere is ALWAYS hope, Michael. Don't ever lose hope. When you get through this dark tunnel, don't forget about those entering into it on the other side. Remember to come back and post to help support them. Truly, that will make a difference!
Meniere's Disease
- Thread starter Teri
- Start date
This tunnel has been a long one. The longest Dark Tunnel. I have been in it for more than a year now, suffering like this. And it has been a noisy one, too. If i ever get trough this i will do my best to help the other Meniereans somehow.
As i mentioned earlier i am willing travel to US if there is any treatmens available. And i dont mean chitchatting with therapists now. I put my hope in Americans with this matter.
Had i the chance i would start studying to become a doctor... ENT myself.
As i mentioned earlier i am willing travel to US if there is any treatmens available. And i dont mean chitchatting with therapists now. I put my hope in Americans with this matter.
Had i the chance i would start studying to become a doctor... ENT myself.
i had an appointment with a new psychiatrist today. They start evaluate my working condition. It might take some months or even a year. New meds, no Mirtazapin from this day on. Some sort of therapy maybe, too. Blood test for the reason i dont know. I pointed out to her atleast 3 times that T is my biggest problem at the moment. Everything else follows. Ear pressure is the good number 2 in my list of problems.
One of the blood tests I had was for Lyme's Disease. It can cause ear problems. Maybe for that??
@MichaelM
My brother, who has had T, H, and ear pressure for quite a few years said that eventually the T and ear pressure get habituated. He does okay with the H if he doesn't wear his hearing aids, but he said sometimes a loud sound will feel like someone was stabbing a knife in his ear! Poor guy. His hearing loss is miltary related. I think he also has an autoimmune disease...something related to Lupus I think.
I have had perpetual ear pressure since my T started, there were some days when it was not so noticeable...but other days it is pretty bad. It seems as if my right ear is a little messed up as well, but I am hoping it is seasonal...I have some allergies.
My brother, who has had T, H, and ear pressure for quite a few years said that eventually the T and ear pressure get habituated. He does okay with the H if he doesn't wear his hearing aids, but he said sometimes a loud sound will feel like someone was stabbing a knife in his ear! Poor guy. His hearing loss is miltary related. I think he also has an autoimmune disease...something related to Lupus I think.
I have had perpetual ear pressure since my T started, there were some days when it was not so noticeable...but other days it is pretty bad. It seems as if my right ear is a little messed up as well, but I am hoping it is seasonal...I have some allergies.
@SueR @Teri
The blood test might have something to do with thyroid and to rule out infections.
Teri, sorry to hear about your brother´s T. Military related T seems to be common. I hope is it that mild one for the most of the service men. it is possible to habituate to that version of T.
I havent had pressureless ear since the spring of 2010. 4,5 years now. There have been some relatively good weeks after that, i know.
This severe T started i think last year and the Phase Hell started last August (2 months now). This is getting worse. plus all the other symptoms. i am going to balance test on Wednesday 22nd this month.
Doc told me yesterday to quit alcohol. She said if i cannot do it on my own need to consider drugs like Antabus and/or go to local AA or similar. I promised i stay t-total this week but it is Thursday and i know weekend is gonna be my true test. I guess i have developed myself a small problem again.
The blood test might have something to do with thyroid and to rule out infections.
Teri, sorry to hear about your brother´s T. Military related T seems to be common. I hope is it that mild one for the most of the service men. it is possible to habituate to that version of T.
I havent had pressureless ear since the spring of 2010. 4,5 years now. There have been some relatively good weeks after that, i know.
This severe T started i think last year and the Phase Hell started last August (2 months now). This is getting worse. plus all the other symptoms. i am going to balance test on Wednesday 22nd this month.
Doc told me yesterday to quit alcohol. She said if i cannot do it on my own need to consider drugs like Antabus and/or go to local AA or similar. I promised i stay t-total this week but it is Thursday and i know weekend is gonna be my true test. I guess i have developed myself a small problem again.
Thanks Michael. As I said, my brother tells me he has loud T days and has to use an I-pod to try to mask the sound. He has T in both ears, but one ear seems to be worse than the other.
In terms of his condition, he worries most about the Lupus. He has been up and down with his health and he is only in his early 40's. He does keep a pretty good attitude which is good.
I hope you find some good answers and some good treatments to get you into a better place, @MichaelM. You have struggled LONG enough, that is for sure.
I am still praying for you....every day. Keep positive.
In terms of his condition, he worries most about the Lupus. He has been up and down with his health and he is only in his early 40's. He does keep a pretty good attitude which is good.
I hope you find some good answers and some good treatments to get you into a better place, @MichaelM. You have struggled LONG enough, that is for sure.
I am still praying for you....every day. Keep positive.
@Teri, sorry, i was really tired in the morning when i wrote that. I didnt realize you mentioned loud T your brother has. I have started to listen to pink noise myself here. It doesnt mask my T completely but i have found it relaxing during this week.
Thank you for your prayers. Today i feel kinda OK compared to the last 3-4 weeks.
I hope you are doing good. I hope we all are!
Thank you for your prayers. Today i feel kinda OK compared to the last 3-4 weeks.
I hope you are doing good. I hope we all are!
Back again for the latest news from my MD-Frontier.
I had an appointment with an ENT today. Very keen on subject this one was. so i got to ask lot of questions this time.
Answers are as follows:
-there is no treatments or cure for T. (that would absolutely work for everybody)
there is no cure for MD. period.
-there are no meds/drugs/herbs that would take one´s T away or even lower it (scientifically proven).
If someone believes ******** (put your favourite drug, pill, anything here) helps it´s only a good thing but it is psychological.
-MD cannot cause facial numbness to the cheek/jaw. So it is as i hoped for: gotta have my TMJ/teeth checked for atleast some kind of relief to all this.
-MD can cause weird sensations inside your head. Feeling like there is water coming out of your ear, and this one i have experienced once myself.
-there are people studying T/MD scientifically on this Earth. Doing serious bad ass T/MD studies.
some names where mentioned but i forgot them. The sheer fact that those people exist gives us that hope we always remember to mention.
-and remember: if there is someone willing to buy and pay there is always someone willing to sell wether it´s hope or miracle cures, devices, pills or therapies. Desperation is a good business.
So.... what do we have for TRUE treatmens:
CWI-therapy (i hope i am the first and only pioneer in this discipline....). You did guess right: Cope With It.
Doesnt really matter how you do it since it is the only thing there is. Different therapies, Santa Claus, God... anything if it helps you on your CWI-path.
and physical exercises to keep you going.
That´s it.
I started CWI today. Thing is i´been doing CWI for the whole year by seeing psychiatrist, psychologists, doctors, ENT´s and that nice psychiatric (...attractive
) nurse i saw about dozen times.
I had an appointment with an ENT today. Very keen on subject this one was. so i got to ask lot of questions this time.
Answers are as follows:
-there is no treatments or cure for T. (that would absolutely work for everybody)
there is no cure for MD. period.
-there are no meds/drugs/herbs that would take one´s T away or even lower it (scientifically proven).
If someone believes ******** (put your favourite drug, pill, anything here) helps it´s only a good thing but it is psychological.
-MD cannot cause facial numbness to the cheek/jaw. So it is as i hoped for: gotta have my TMJ/teeth checked for atleast some kind of relief to all this.
-MD can cause weird sensations inside your head. Feeling like there is water coming out of your ear, and this one i have experienced once myself.
-there are people studying T/MD scientifically on this Earth. Doing serious bad ass T/MD studies.
some names where mentioned but i forgot them. The sheer fact that those people exist gives us that hope we always remember to mention.
-and remember: if there is someone willing to buy and pay there is always someone willing to sell wether it´s hope or miracle cures, devices, pills or therapies. Desperation is a good business.
So.... what do we have for TRUE treatmens:
CWI-therapy (i hope i am the first and only pioneer in this discipline....). You did guess right: Cope With It.
Doesnt really matter how you do it since it is the only thing there is. Different therapies, Santa Claus, God... anything if it helps you on your CWI-path.
and physical exercises to keep you going.
That´s it.
I started CWI today. Thing is i´been doing CWI for the whole year by seeing psychiatrist, psychologists, doctors, ENT´s and that nice psychiatric (...attractive
) nurse i saw about dozen times.
There's a person (don't know her credentials) that helps people with MD at MEEI (Mass Eye and Ear Infirmary). I declined to schedule at my last visit, even though the wait time is like 8-10 months to get in. I think my next visit I will schedule to meet with her. I think she gives counselling.
Thank you for posting Michael. You shared some good information.
My ENT suggested that I use Lipoflavinoid that is a supplement that is supposed to help the health of the inner ear. Which is what I take with the diuretics.
My ENT suggested that I use Lipoflavinoid that is a supplement that is supposed to help the health of the inner ear. Which is what I take with the diuretics.
@Teri @SueR
I have been away from TTalk. I got a bit tired of reading how easy it is just to chance the attitude and see all the problems disappear and fade. Most folks have absolute no idea how bad T (and MD!) can be and it is only a good thing. They get used to their mild T and i am happy for them.
I continue taking betaserc daily and diuretics sometimes (ENT said dont take them every single day but seasonally)
also bupronion hydrocloride to beat the anxiety and "cheer me up". That´s about all there is available except the discussion with a psychiatrist.
After suffering terribly for some 14-15 months from Menieres i have now realized that one day i might be able to actually spend the whole day without thinking my ear 20 times in per minute.
The Merry T-Folks from the joyous Land of Habituationville could call this habituation.
I have been away from TTalk. I got a bit tired of reading how easy it is just to chance the attitude and see all the problems disappear and fade. Most folks have absolute no idea how bad T (and MD!) can be and it is only a good thing. They get used to their mild T and i am happy for them.
I continue taking betaserc daily and diuretics sometimes (ENT said dont take them every single day but seasonally)
also bupronion hydrocloride to beat the anxiety and "cheer me up". That´s about all there is available except the discussion with a psychiatrist.
After suffering terribly for some 14-15 months from Menieres i have now realized that one day i might be able to actually spend the whole day without thinking my ear 20 times in per minute.
The Merry T-Folks from the joyous Land of Habituationville could call this habituation.
Yes, that is a true reality....that you will eventually not react to the T. That is what I read from those with severe T.
As for the MD, I hope those symptoms are getting better.
I have not had all the tests to determine if what I have is MD, but I did recently rule out autoimmune after seeing a specialist.
I have never had any of the other tests mentioned such as an MRI, EEG (electroencephalogram),
Transtympanic electrocochleography (ECOG Test) , or the Electronystagmography (ENG). I guess the ENT is so sure it is endolymphatic hydrops that she didn't want to pursue it further.
I would not beat yourself up too much Michael. You have gotten into a severe case of this and the anxiety and depression, I think would be normal. As you get more adjusted and can see your condition getting better, don't you think your anxiety and depression will get better too?
For as much as you have gone though, I think you are an amazing warrior!
As for the MD, I hope those symptoms are getting better.
I have not had all the tests to determine if what I have is MD, but I did recently rule out autoimmune after seeing a specialist.
I have never had any of the other tests mentioned such as an MRI, EEG (electroencephalogram),
Transtympanic electrocochleography (ECOG Test) , or the Electronystagmography (ENG). I guess the ENT is so sure it is endolymphatic hydrops that she didn't want to pursue it further.
I would not beat yourself up too much Michael. You have gotten into a severe case of this and the anxiety and depression, I think would be normal. As you get more adjusted and can see your condition getting better, don't you think your anxiety and depression will get better too?
For as much as you have gone though, I think you are an amazing warrior!
I have to say, I feel like I'm being criticized for saying my symptoms aren't bad yet. Maybe the comments weren't directed towards me, but right now, I feel pretty great, and I don't want to feel bad about saying that. I know things can go south for me real quick, and I will figure out how to deal with that as that time comes. I'm trying to do what I can to get my life and health in a better place so tha I am better able to handle it when it comes. I don't want you to stay away, Michael, because some of us are talking about our current situation as being mild. I'm in the early stages, and I value your input because I think that's my future. My current state is in no way minimizing your current state. I feel like I'm 100 yards off the starting line of a life-long marathon. of course I'm going to be in a better state...I have just started.
I'm finally in my own place, but my not-yet-ex is stressing me out - a lot. Gotta get through that. I'm trying to get to a good place. I start yoga this weekend. Will capitalize on that while I still can!
I'm doing it mainly for flexibility, but I figured balance, posture, flexibility, strengthening... it's all good!
I have really tight muscles. Something I've had to on for years and have neglected after I tore my soleus (calf muscle) during a race. I dropped out of running almost completely (pretty close to completely) and haven't done anything worth noting for about 2 years.
I have really tight muscles. Something I've had to on for years and have neglected after I tore my soleus (calf muscle) during a race. I dropped out of running almost completely (pretty close to completely) and haven't done anything worth noting for about 2 years.
I am not criticising anyone on this thread but some members´comments elsewhere, which i have seen over the last weeks.
But yet again: this is not MD Talk this is T-Talk where 99.8% (so it seems) of the people are suffering from that mild T (and it is only a good thing that their T is mild and easy & fast to habituate to). MD can create T that is beyond understanding. ENT yesterday said that some sort of tinnitus is actually pretty normal for a human being. Makes sense, somehow, since the hearing is an active nerve systems.
I myself am a living example of that mild T habituation. I have had mild common tinnitus for over 15 years or so. I DID get habituated to it BUT then came the MD and wiped everything away with T so loud i would have laughed had i known the volume of it with my mild T.
yes, during this year i have been at the gates of death (no reason to deny it) and in total agony with my tinnitus and other MD-symptoms.
But i am still alive.
I am happy to discuss Meniere´s and give fellow sufferer´s support anytime.
But yet again: this is not MD Talk this is T-Talk where 99.8% (so it seems) of the people are suffering from that mild T (and it is only a good thing that their T is mild and easy & fast to habituate to). MD can create T that is beyond understanding. ENT yesterday said that some sort of tinnitus is actually pretty normal for a human being. Makes sense, somehow, since the hearing is an active nerve systems.
I myself am a living example of that mild T habituation. I have had mild common tinnitus for over 15 years or so. I DID get habituated to it BUT then came the MD and wiped everything away with T so loud i would have laughed had i known the volume of it with my mild T.
yes, during this year i have been at the gates of death (no reason to deny it) and in total agony with my tinnitus and other MD-symptoms.
But i am still alive.
I am happy to discuss Meniere´s and give fellow sufferer´s support anytime.
I am sorry if I am the one moaning a lot recently just trying to understand it all. Just feel scared and young with all this tinnitus. All your support is really nice though.
We all have the right to suffer and moan. No one needs to be sorry about that, or anything.
This is just me talking about how i feel about some people´s comments about some peoples´ suffering.
This is just me talking about how i feel about some people´s comments about some peoples´ suffering.
@Lisa Robinson
Stop in anytime on our thread. Hope your days are going better.
@SueR
I go to a women's club called Curves. I am thinking you probably have them in MA...it is an international club. The owner did have yoga a few times, which I did liked but the teachers never stayed long. We also had a doctor come in to do Tai Chi but he also left. I should be trying to do some yoga at home as I have a couple of DVD's but I never seem to do it on my own. I wish I was more motivated in that respect. I am walking anywhere from a 1/2 mile to 3 miles off and on as well. My husband is good about walking with me but he is gone a lot for work. I need to try to find someone in my neighborhood who would like to walk. There is a lady at Curves who asked me to walk at the Mall with her. I may take her up on that this winter sometimes. I have a treadmill down in my basement, but I find that rather boring. Is your stress level better? Are you settling into your new place? I wish you could have your dog. I think dogs are such wonderful stress relievers.
@MichaelM
I hope your feeling better at least for a day Michael, so you can have some much needed peace. I think about you off and on throughout my day and pray for you when I do. I also pray that a cure will come or some sort of medication that works very well for EVERYONE with MD. That would be awesome as well!
Stop in anytime on our thread. Hope your days are going better.
@SueR
I go to a women's club called Curves. I am thinking you probably have them in MA...it is an international club. The owner did have yoga a few times, which I did liked but the teachers never stayed long. We also had a doctor come in to do Tai Chi but he also left. I should be trying to do some yoga at home as I have a couple of DVD's but I never seem to do it on my own. I wish I was more motivated in that respect. I am walking anywhere from a 1/2 mile to 3 miles off and on as well. My husband is good about walking with me but he is gone a lot for work. I need to try to find someone in my neighborhood who would like to walk. There is a lady at Curves who asked me to walk at the Mall with her. I may take her up on that this winter sometimes. I have a treadmill down in my basement, but I find that rather boring. Is your stress level better? Are you settling into your new place? I wish you could have your dog. I think dogs are such wonderful stress relievers.
@MichaelM
I hope your feeling better at least for a day Michael, so you can have some much needed peace. I think about you off and on throughout my day and pray for you when I do. I also pray that a cure will come or some sort of medication that works very well for EVERYONE with MD. That would be awesome as well!
Is it true they were doing trials for steriod injections for MD? To take down inflammation and fluid?
Thanks for clarifying, @MichaelM! I'm glad I spoke up because I thought you were talking about the folks in this thread. Now that I know you weren't, I feel better about that.
I do know there are a lot of people who suffer from very loud T. I'm fortunate to not be one of them. I don't pretend that it's no big thing, because I know it can be for some. For too many. My heart goes out to those that have symptoms incredibly severe. I also am thankful for every day I have before that happens for me. I don't spend too much time thinking about further down the marathon road - never have, why start now when it's a dark place??
@Teri, the closest one is 15 min. from my office...when there's no traffic. about 30-45 min after work. I have a gym that my company pays for right in my office park, but they don't have yoga. They do have group classes, but are too loud for my liking. I'd rather use the machines during the work week (daytime or morning) and yoga on weekends, with maybe a class or two during the middle of the week. If I do any group activities, I would want to get back into karate. I have my sankyu (3rd degree) brown belt in kenpo. I'd have to start over again, but I thoroughly enjoyed it when I was practicing. I left all my stresses outside the dojo and was singularly focused for a full hour of my time. It's hard for me to do that in other situations... maybe I can be singularly focused while working on yoga.
Welcome to our little corner of TT, @Lisa Robinson!
I do know there are a lot of people who suffer from very loud T. I'm fortunate to not be one of them. I don't pretend that it's no big thing, because I know it can be for some. For too many. My heart goes out to those that have symptoms incredibly severe. I also am thankful for every day I have before that happens for me. I don't spend too much time thinking about further down the marathon road - never have, why start now when it's a dark place??
@Teri, the closest one is 15 min. from my office...when there's no traffic. about 30-45 min after work. I have a gym that my company pays for right in my office park, but they don't have yoga. They do have group classes, but are too loud for my liking. I'd rather use the machines during the work week (daytime or morning) and yoga on weekends, with maybe a class or two during the middle of the week. If I do any group activities, I would want to get back into karate. I have my sankyu (3rd degree) brown belt in kenpo. I'd have to start over again, but I thoroughly enjoyed it when I was practicing. I left all my stresses outside the dojo and was singularly focused for a full hour of my time. It's hard for me to do that in other situations... maybe I can be singularly focused while working on yoga.
Welcome to our little corner of TT, @Lisa Robinson!
It´s good to speak up and say things just like we feel them. It´good to be open and honest.
I can admit that i hate the feeling of rage and fury when sitting here alone with my laptop. It´s a strange feeling and i hate it. Words are just words so why do i react so? That i dont know.
Those feelings came mainly because i felt that some folks are taking away my right to suffer. Belittling my suffering with T...stuff like that.
I can admit that i hate the feeling of rage and fury when sitting here alone with my laptop. It´s a strange feeling and i hate it. Words are just words so why do i react so? That i dont know.
Those feelings came mainly because i felt that some folks are taking away my right to suffer. Belittling my suffering with T...stuff like that.
I do know there are a lot of people who suffer from very loud T. I'm fortunate to not be one of them. I don't pretend that it's no big thing, because I know it can be for some. For too many. My heart goes out to those that have symptoms incredibly severe. I also am thankful for every day I have before that happens for me. I don't spend too much time thinking about further down the marathon road - never have, why start now when it's a dark place??
@SueR
I am hoping that my MD with NEVER get to severe. I know that everyone is different have MD at varying degrees but I want to be one of those folks in which medications/procedures can keep it under control. Or, best case, a new medication or treatment comes out that helps symptoms 100%.
My question to you is what in the world do you do to keep so positive?
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