Hello everyone,
It has been a while.. I stopped visiting Phoenix Rising for a time because other things happened in my life, some complicated turns in life made me too tired to focus on anything else.
The medication was working, I felt better on that part. Not 'great', but slightly stronger in most ways. Still massively tired and exhausted but I was better able to deal with it. Less trembling, less dizziness, less moments of feeling excessively hot and ill. The muscle twitches had stopped, and my eyesight/focus was better. I felt more clear in my head, could ride on my bike and notice all the traffic around me clearly etc.
It was better.
But it changed about three weeks ago.
Everything started to get harder because exhaustion was getting worse and worse. My muscles feel so tired, so feverishly tired. Even chewing my food makes me take 'chewing breaks' because my jaw muscles feel so tired and heavy. Opening a bottle-cap, or writing with a pen. It all feels heavy and difficult.
I feel so hot all the time, feverishly hot. My back feels that way the most, it feels so hot that I really feel ill. I just want to lie down all the time, and wait for it to go away. But it does'nt, nothing makes the overheated feeling go away. I have no fever, I have no idea why I feel so hot.
When its morning, and when I wake up I feel so horrible. My brain is a heavy haze of heaviness, my whole body feels overheated and sore. My left side is most sore, especially my left chest and back.
When I wake up in the morning my eyes cannot focus well, and my balance is off. When I go to the toilet often stagger and bump into things.
Drinking lots of water when I wake up makes no difference anymore. I still do it, but it has no effect.
I have some other odd things going on too. My nose is constantly irritated, each morning some blood comes out. When I touch it on the left side, it hurts because inside its never really healed yet. I suspect it might be a cold sore kind of thing that is not going away.
The worst thing of all is that my memory problems are really terrible at the moment. I am dazed and confused. I am trying so hard every moment of the day to focus on what has to be done but I forget absolutely 'everything'. It drives me crazy. I cannot think, cannot focus, cannot finish thoughts. I feel so horrible. I am in the house all the time and never go anywhere anymore.
My next appointment with the neurologist is in October. I have this festering fear that he will stop helping me after that. The Tilt Table Test was done, medication was prescribed.. I fear that that was it. I fear that there will be no more help. My blood pressure is normal-ish at the moment, its often around 110/70. So that cannot be the issue right? Maybe I should do a standing test here at home again to see what happens.
I went to my GP yesterday, to ask if she could test my blood for vitamin, mineral etc shortages. And whatever she thought would be useful with the symptoms that I have.
She turned out to be ill, so I had another one. He, had 'no idea' about what POTS was, what the medication was and could not open the files made by the neurologist. He could not see anything about POTS in the files except for the fact that I had asked if it could be tested. So he questioned me about if I was medically trained or not. I said no, and explained that I had been searching for the cause of my problems for years and years. He did not answer to that. I do not know what his thoughts where.
I asked him to test my potassium levels, which is what the neurologist advised, he had told me to wait for three months and then have it tested. So I asked for that.
I also asked what else he thought would be good to test, to find what the cause is of the symptoms above. He said he was not sure. He decided to do the general blood count etc.
I asked him to add other electrolytes and he added magnesium. And I asked him if he could maybe search with me for reasons of tired muscles and hot flashes. But he was not sure what to test for.
So, the bloodwork is done now, I have to wait for the results. But my hopes are not really high.
I wish my own GP had been there, she does not know anything about POTS either, but at least she is open to my worries and thoughts.
I wish someone could help me. I really hope that the neurologist will not stop helping me in October. I hope, hope, hope that he will search with me. And help me.
If not, I am lost. I do not know where to go anymore if I cannot go to him.
It has been a while.. I stopped visiting Phoenix Rising for a time because other things happened in my life, some complicated turns in life made me too tired to focus on anything else.
The medication was working, I felt better on that part. Not 'great', but slightly stronger in most ways. Still massively tired and exhausted but I was better able to deal with it. Less trembling, less dizziness, less moments of feeling excessively hot and ill. The muscle twitches had stopped, and my eyesight/focus was better. I felt more clear in my head, could ride on my bike and notice all the traffic around me clearly etc.
It was better.
But it changed about three weeks ago.
Everything started to get harder because exhaustion was getting worse and worse. My muscles feel so tired, so feverishly tired. Even chewing my food makes me take 'chewing breaks' because my jaw muscles feel so tired and heavy. Opening a bottle-cap, or writing with a pen. It all feels heavy and difficult.
I feel so hot all the time, feverishly hot. My back feels that way the most, it feels so hot that I really feel ill. I just want to lie down all the time, and wait for it to go away. But it does'nt, nothing makes the overheated feeling go away. I have no fever, I have no idea why I feel so hot.
When its morning, and when I wake up I feel so horrible. My brain is a heavy haze of heaviness, my whole body feels overheated and sore. My left side is most sore, especially my left chest and back.
When I wake up in the morning my eyes cannot focus well, and my balance is off. When I go to the toilet often stagger and bump into things.
Drinking lots of water when I wake up makes no difference anymore. I still do it, but it has no effect.
I have some other odd things going on too. My nose is constantly irritated, each morning some blood comes out. When I touch it on the left side, it hurts because inside its never really healed yet. I suspect it might be a cold sore kind of thing that is not going away.
The worst thing of all is that my memory problems are really terrible at the moment. I am dazed and confused. I am trying so hard every moment of the day to focus on what has to be done but I forget absolutely 'everything'. It drives me crazy. I cannot think, cannot focus, cannot finish thoughts. I feel so horrible. I am in the house all the time and never go anywhere anymore.
My next appointment with the neurologist is in October. I have this festering fear that he will stop helping me after that. The Tilt Table Test was done, medication was prescribed.. I fear that that was it. I fear that there will be no more help. My blood pressure is normal-ish at the moment, its often around 110/70. So that cannot be the issue right? Maybe I should do a standing test here at home again to see what happens.
I went to my GP yesterday, to ask if she could test my blood for vitamin, mineral etc shortages. And whatever she thought would be useful with the symptoms that I have.
She turned out to be ill, so I had another one. He, had 'no idea' about what POTS was, what the medication was and could not open the files made by the neurologist. He could not see anything about POTS in the files except for the fact that I had asked if it could be tested. So he questioned me about if I was medically trained or not. I said no, and explained that I had been searching for the cause of my problems for years and years. He did not answer to that. I do not know what his thoughts where.
I asked him to test my potassium levels, which is what the neurologist advised, he had told me to wait for three months and then have it tested. So I asked for that.
I also asked what else he thought would be good to test, to find what the cause is of the symptoms above. He said he was not sure. He decided to do the general blood count etc.
I asked him to add other electrolytes and he added magnesium. And I asked him if he could maybe search with me for reasons of tired muscles and hot flashes. But he was not sure what to test for.
So, the bloodwork is done now, I have to wait for the results. But my hopes are not really high.
I wish my own GP had been there, she does not know anything about POTS either, but at least she is open to my worries and thoughts.
I wish someone could help me. I really hope that the neurologist will not stop helping me in October. I hope, hope, hope that he will search with me. And help me.
If not, I am lost. I do not know where to go anymore if I cannot go to him.
