Hey there everyone,
I wanted to write a short update, but also apologize for not (yet) replying to the comments made under my previous blog post. I have not been well, and do not use the computer as much because I am simply too tired often. I pretty much do nothing at all when its as bad as it is right now. I cannot focus on anything.
My memory problems have worsened, I am so forgetful that its insane sometimes. I really sometimes function as an old and demented lady. Day after day I forget things 'constantly'. People around me have started to notice it a lot, and they are worried about it.
I also have been incredibly tired, with heavy muscles and no energy in them. Especially my legs and hands/fingers. I get very very sleepy after breakfast, so much that I often cannot fight it and fall asleep. Coffee or things like that do not help at all. I feel like I am stuck in the moment where you just awake after a night of sleep. Where your brain is still half gone, not remembering crucial things. A sleep drunk state that stays during the day. There are better days sometimes, a couple of times a month I feel much better suddenly, and I cannot pinpoint why. I feel fresh then, after sleeping, and am suddenly able again to do normal things. Its wonderful, and at the same time frustrating when you feel yourself slipping into the the sleepy mud again. Knowing there is nothing you can do about it.
My update is about my most recent visit to the neurologist. I went there being horribly scared that it would be the last appointment, and that he would let me go. I really need someone help, so I was really worried about that.
It was'nt the last appointment it turned out, so I am very relieved. And once again he listened and took it serious, as he did before.
We decided to try Midodrine, to raise my blood pressure more. He suggested that my problems with thinking, blurriness, forgetfulness (brain-fog) could be caused by a problem with sufficient blood-flow in the brain. He said that even when the blood pressure looks normal, there can still be a blood flow problem in the brain. My blood-pressure is not dramatically low at the moment, thanks to the fludrocortison and water intake. But still in the lower side. So trying Midodrine makes sense to me.
I took my first 5 mg tablet this morning and checked my blood pressure a couple of times in the hours that followed. Surprisingly my blood pressure stayed unchanged, nothing happened. I did get goose bumps on my arms and very cold extremities (hands, toes, nose etc). Which are side effects that really do not bother me.
I hope though, that it will have an effect on my blood pressure at some point.
One problem with Midodrine is that its very expensive because its not covered by the health insurance. Over here one 5 mg tablet costs 1.50 euros! If a person needs a couple of those per day, its 'a horrible lot' of money. I do not know if I will be able to pay for all of that.
I decided to try anyway, because 'if' it helps with the forgetfulness, I will at the least.. know that the blood flow in the brain is to blame for it.
How I will manage to pay for all of it then, I do not know, but knowing what the reasons for the symptoms are, is very useful either way. Its knowledge about the cause, and that is worth a lot I think.
One little happy side note: I just bought a quirky water bottle with a filter in it. The tap water in this house is very bitter, so I was drinking bottled mineral water. But when you drink so much of it, you build up a crazy amount of waste (bottles) in a short period of time. For me its about 6 to 8 bottles a day.
I do not want to add so much to the mountains of plastic waste that we create on our planet. So a filter bottle is the solution
weirdly enough I really enjoy the gadget. And the taste of the tap water is slightly better now.
I wanted to write a short update, but also apologize for not (yet) replying to the comments made under my previous blog post. I have not been well, and do not use the computer as much because I am simply too tired often. I pretty much do nothing at all when its as bad as it is right now. I cannot focus on anything.
My memory problems have worsened, I am so forgetful that its insane sometimes. I really sometimes function as an old and demented lady. Day after day I forget things 'constantly'. People around me have started to notice it a lot, and they are worried about it.
I also have been incredibly tired, with heavy muscles and no energy in them. Especially my legs and hands/fingers. I get very very sleepy after breakfast, so much that I often cannot fight it and fall asleep. Coffee or things like that do not help at all. I feel like I am stuck in the moment where you just awake after a night of sleep. Where your brain is still half gone, not remembering crucial things. A sleep drunk state that stays during the day. There are better days sometimes, a couple of times a month I feel much better suddenly, and I cannot pinpoint why. I feel fresh then, after sleeping, and am suddenly able again to do normal things. Its wonderful, and at the same time frustrating when you feel yourself slipping into the the sleepy mud again. Knowing there is nothing you can do about it.
My update is about my most recent visit to the neurologist. I went there being horribly scared that it would be the last appointment, and that he would let me go. I really need someone help, so I was really worried about that.
It was'nt the last appointment it turned out, so I am very relieved. And once again he listened and took it serious, as he did before.
We decided to try Midodrine, to raise my blood pressure more. He suggested that my problems with thinking, blurriness, forgetfulness (brain-fog) could be caused by a problem with sufficient blood-flow in the brain. He said that even when the blood pressure looks normal, there can still be a blood flow problem in the brain. My blood-pressure is not dramatically low at the moment, thanks to the fludrocortison and water intake. But still in the lower side. So trying Midodrine makes sense to me.
I took my first 5 mg tablet this morning and checked my blood pressure a couple of times in the hours that followed. Surprisingly my blood pressure stayed unchanged, nothing happened. I did get goose bumps on my arms and very cold extremities (hands, toes, nose etc). Which are side effects that really do not bother me.
I hope though, that it will have an effect on my blood pressure at some point.
One problem with Midodrine is that its very expensive because its not covered by the health insurance. Over here one 5 mg tablet costs 1.50 euros! If a person needs a couple of those per day, its 'a horrible lot' of money. I do not know if I will be able to pay for all of that.
I decided to try anyway, because 'if' it helps with the forgetfulness, I will at the least.. know that the blood flow in the brain is to blame for it.
How I will manage to pay for all of it then, I do not know, but knowing what the reasons for the symptoms are, is very useful either way. Its knowledge about the cause, and that is worth a lot I think.
One little happy side note: I just bought a quirky water bottle with a filter in it. The tap water in this house is very bitter, so I was drinking bottled mineral water. But when you drink so much of it, you build up a crazy amount of waste (bottles) in a short period of time. For me its about 6 to 8 bottles a day.
I do not want to add so much to the mountains of plastic waste that we create on our planet. So a filter bottle is the solution
weirdly enough I really enjoy the gadget. And the taste of the tap water is slightly better now.
