Johnie
Well-known member
All my life I have been a Social Phobic, a recluse, with no friends and having no relationships. But over the past year something has happened to me that is far far worse and I would gladly go back to what I was last year. I did not know when I was lucky.
For the past five years I have been getting more and more remote and distant and dizzy, and I was putting this down to the stress of having S-P, and on quitting my job largely because of this. (I am 56 y.o.)
It got so bad that I went to the doctor, 2 years ago. He gave me some blood tests, and told me he could find nothing wrong. He told me to wait and see how things developed.
And develop they did. Last year I had some very severe attacks of vertigo, with vomiting. These attacks rendered my completely prostrate, but were endurable because they lasted only 3-4 hours.
Back to the docs. I told him it affected my ears, and my balance, so he referred me to the local ENT clinic. I was very bad in January but now it was a continual thing. The doctor told me to wait for the call from the clinic.
I had a series of auditory tests in March, but it was not until July that I saw the senior consultant, and he gave me a prescription for some tablets. As I suspected, I had Meniere’s Syndrome. It seems to be getting progressively worse now and it is torture. Each day seems to bring a worse horror than the one before.
What Meniere's Syndrome means to me.
It means living a nightmare, a seven month waking nightmare; and knowing that you don't wake up in the morning and it's not real.
It means having my head in a clamp, which is over my ears. Someone is poking a pencil in each of my ears. I am somewhere where there is a loud hissing noise, and a low rumbling sound - but it is also deathly quiet. Sound hurts - but I cannot hear it. Not properly.
My head is full of blur and fog and hot sand - I cannot think. I cannot walk - I hold on but I fall about. The enemy is inside the gate. Inside my head. My brain is submerged in a warm poisonous acid. My head aches and my eyes twitch and sting. My stomach gags. And the world revolves.
I am hungry but I cannot eat; my stomach no longer lets me. I need exercise but I cannot walk. I want and need to do things but I'm too dizzy to leave the house. I need to see the doctor but I'm unable to get there.
I move my eyes up, I move my eyes down, and I wish I hadn't because the dizziness overwhelms me.
I lie down perfectly still to try to escape the dizziness of moving. After 20 minutes the fluid in my head seems like it stagnates with not moving. I stand up. I try to walk around. Then I try sitting down. Then I try lying down again. There is no escape.
Feel rotten when I rise from bed. Watching the clock... 10am, 12am. 3pm. 6pm. How much longer? How long till bed? Then I do not sleep. Then I do sleep and have a nightmare. Day after day. Week after week. Month after month...
It was the middle of the winter and I was freezing but too hot. It is now the middle of the summer and I can't escape the heat. I breath the air but there is no oxygen in it.
My hearing is going. My left ear came and went, but is now almost profoundly deaf. My right ear feels full and 'strummie' like tapping a balloon with a pen.
With my right ear I can still hear the birds singing outside my window. I fear that soon, I will no longer hear this sound, and I will be alone.
I used to have faith in doctors, before I needed them myself.
Three years previous with dizziness and anxiety; several visits to doctors. wait; wait; wait.
Then vertigo attacks.
Now I know the truth - after waiting another seven months just to see a specialist.
Just to tell me what I already knew by now. That I have Meniere's. It doesn't take an expert.
“Take less salt” and a prescription for tablets. Then next appointment with him - December 29th...
Also, no support or guidance from the doctors. Even when I was prostrate and vomiting with vertigo, before I knew what I had, he would not come out. I have to stagger through the streets to get to the doctor's or the hospital. When I phoned I was treated with disregard. This is not our policy. That is not our policy. The doctor cannot come out. You must wait for the specialist... We have no record of your referral. To renew your prescription, you must come to the surgery yourself. We can only give you two weeks' medicine. That is the policy.
And the tablets! "Betahistine"? Or Placebo? I have been taking these for 8 day, and for 8 days it's getting worse. Seven months wait to get some tablets that do not work.
The frustration and stress and worry build up and up and up. I would be better off without the doctors.
We don't know how lonely we can be, until we are ill. Until we are ill with something that people do not understand. Month after month after month, with no end in sight. Quality of life? Forget it.
It affects my hearing, my balance, my vision, and my stomach. It affects how I feel temperature, and how I perceive the passing of time. Now it is affecting my sanity. I obsess over irrelevant things. How to pay my bills. How to get money from the bank. How to get to the doctors. Will I ever get better.
I was hyperventilating with it this morning, in the bathroom. But the worse things are where it is reinforced by my stress and my S-P. I am even more of a prisoner now than I have ever been.
No wonder Van Gogh cut off his own ear with it, and no wonder people take their own lives. People with this need friends, and I have none.
I must be strong...
For the past five years I have been getting more and more remote and distant and dizzy, and I was putting this down to the stress of having S-P, and on quitting my job largely because of this. (I am 56 y.o.)
It got so bad that I went to the doctor, 2 years ago. He gave me some blood tests, and told me he could find nothing wrong. He told me to wait and see how things developed.
And develop they did. Last year I had some very severe attacks of vertigo, with vomiting. These attacks rendered my completely prostrate, but were endurable because they lasted only 3-4 hours.
Back to the docs. I told him it affected my ears, and my balance, so he referred me to the local ENT clinic. I was very bad in January but now it was a continual thing. The doctor told me to wait for the call from the clinic.
I had a series of auditory tests in March, but it was not until July that I saw the senior consultant, and he gave me a prescription for some tablets. As I suspected, I had Meniere’s Syndrome. It seems to be getting progressively worse now and it is torture. Each day seems to bring a worse horror than the one before.
What Meniere's Syndrome means to me.
It means living a nightmare, a seven month waking nightmare; and knowing that you don't wake up in the morning and it's not real.
It means having my head in a clamp, which is over my ears. Someone is poking a pencil in each of my ears. I am somewhere where there is a loud hissing noise, and a low rumbling sound - but it is also deathly quiet. Sound hurts - but I cannot hear it. Not properly.
My head is full of blur and fog and hot sand - I cannot think. I cannot walk - I hold on but I fall about. The enemy is inside the gate. Inside my head. My brain is submerged in a warm poisonous acid. My head aches and my eyes twitch and sting. My stomach gags. And the world revolves.
I am hungry but I cannot eat; my stomach no longer lets me. I need exercise but I cannot walk. I want and need to do things but I'm too dizzy to leave the house. I need to see the doctor but I'm unable to get there.
I move my eyes up, I move my eyes down, and I wish I hadn't because the dizziness overwhelms me.
I lie down perfectly still to try to escape the dizziness of moving. After 20 minutes the fluid in my head seems like it stagnates with not moving. I stand up. I try to walk around. Then I try sitting down. Then I try lying down again. There is no escape.
Feel rotten when I rise from bed. Watching the clock... 10am, 12am. 3pm. 6pm. How much longer? How long till bed? Then I do not sleep. Then I do sleep and have a nightmare. Day after day. Week after week. Month after month...
It was the middle of the winter and I was freezing but too hot. It is now the middle of the summer and I can't escape the heat. I breath the air but there is no oxygen in it.
My hearing is going. My left ear came and went, but is now almost profoundly deaf. My right ear feels full and 'strummie' like tapping a balloon with a pen.
With my right ear I can still hear the birds singing outside my window. I fear that soon, I will no longer hear this sound, and I will be alone.
I used to have faith in doctors, before I needed them myself.
Three years previous with dizziness and anxiety; several visits to doctors. wait; wait; wait.
Then vertigo attacks.
Now I know the truth - after waiting another seven months just to see a specialist.
Just to tell me what I already knew by now. That I have Meniere's. It doesn't take an expert.
“Take less salt” and a prescription for tablets. Then next appointment with him - December 29th...
Also, no support or guidance from the doctors. Even when I was prostrate and vomiting with vertigo, before I knew what I had, he would not come out. I have to stagger through the streets to get to the doctor's or the hospital. When I phoned I was treated with disregard. This is not our policy. That is not our policy. The doctor cannot come out. You must wait for the specialist... We have no record of your referral. To renew your prescription, you must come to the surgery yourself. We can only give you two weeks' medicine. That is the policy.
And the tablets! "Betahistine"? Or Placebo? I have been taking these for 8 day, and for 8 days it's getting worse. Seven months wait to get some tablets that do not work.
The frustration and stress and worry build up and up and up. I would be better off without the doctors.
We don't know how lonely we can be, until we are ill. Until we are ill with something that people do not understand. Month after month after month, with no end in sight. Quality of life? Forget it.
It affects my hearing, my balance, my vision, and my stomach. It affects how I feel temperature, and how I perceive the passing of time. Now it is affecting my sanity. I obsess over irrelevant things. How to pay my bills. How to get money from the bank. How to get to the doctors. Will I ever get better.
I was hyperventilating with it this morning, in the bathroom. But the worse things are where it is reinforced by my stress and my S-P. I am even more of a prisoner now than I have ever been.
No wonder Van Gogh cut off his own ear with it, and no wonder people take their own lives. People with this need friends, and I have none.
I must be strong...
