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judithParticipant
do you mean your muscles also felt like spasms?
Dr. D. I really don´t want to be demanding, you probably have a lot to accomplish. It´s just, I´m so desperate for having answers. Could you please answer my question to the ACE- Inhabitor and the other one about the head circumference ( is this how you spell it??).
Today I had an appointment with my family doctor, and I told him about the head age, and the neck pain. His idea is, that probably the msucles of my neck are tensed, cause my ligaments can´t protect me from sleeping with a bad position of my head. This should cause the pain. He just couldn´t explain why the ACE- Inhabitor helps me with this.
So I´m not sure if it´s all about tensed muscles. Could it be an instability of the atlas ( the first vertebra?) and if so, how do i find out. Can it be seen in an X-ray?
Any ideas?Dr. D. would it be possible to send you MRI pictures of my neck, via Mail or so?
They are around 7 years old, but that´s all I have so far.I would love to tell my doctor about the discroll theory, but I´m afraid, that he thinks I´m hypochondriac, which I think could happen. Probably I´ll tell him little by little about all these symptoms, so that he might notice that it can´t be all explained by tensed muscles ( which I think ).
judithParticipantHi
thanks for your answers. The thing is, that I have no doctor, who would and could help me with this. It happens so often that doctors call me crazy because EDS can´t be seen in X-rays. They are just overextended in treating all my symptoms and I don´t want that my family doctor also starts to think, that I am crazy.
So far I am treating myself as good as I can. Through internet I found out what the diamox does. It helps getting to much water out of the body right? Having no doctor who would give it to me just for a try, I was trying to find an alternativ, which can be bought freely. I found a herbal medication, which shall do the same thing (of course not as effective as diamox it would probably do). I just don´t know if it would also be effective to the hydrocephalus. What do you think? I´m trying it right now, but started only 2 days ago.I also found some information about my head circumference, when I was a baby. I have a graph which compares my results with what is average. When I was three month old it was slightly increased than what is considered normal for both, boys and girls. Every other result would fit to the average in boys, which is a little bit more than in girls. So compared to the average in girls it was slightly more. But to me it doesn´t seems unnormal and my doctors would definitely think like that. What do you think?
Dr D. can you answer me another question. I take an ACE – Inhibitor to control my blood pressure and prevent problems with my vessels, because most of the time my BP was to hight. Last monday I forgot to take it and I got this horrible severe head age just like I explained in my first post, but my blood pressure wasn´t to high, so this can´t be the reason for the head age. It was worse than ever before. The Pain went away soon after I took the ACE – Inhibitor. Does an ACE-Inhibitor also has an effect on the pressure of the brain? This information would be very helpful.
I´m also wondering because you say, we should sleep on our sides. Actually it not only happens when I`m laying on my back, but also when I lay on my sides. I remember another thing ( I´m just trying to complete my puzzle ). It happend once, when I was paralyzed that my muscles didn´t feel to relaxed for moving, actually they felt totaly tensed, almost like a spasm, which made me completely stiff. When I really woke up I was so badly tiered. Do you know that too?
It´s also strange that it always happens while taking a short nap in the afternoon, but it never happened at night.
Most of my symptoms are way better or almost gone, when I´m not stressed. When I am psychically or physically stressed I get this horrible head age, feeling sick, weak, having nausea and pressure at my chest, so I immediately need rest. Doctors say I´m just not trained well, because I can´t run with EDS. I´m just not fit enough. I´m not sure about that.This is so complicated, oh my goodness.
judithParticipantHi,
thanks for your reply.
I did the at home version. my pulse increased, but not more than 30 beats per minits, it increased only about 15 – 20 beats.
Seams like I don´t have POTS like I just expected actually (yaehh). Well, but that doesn´t stop me from having these wierd symptoms.Do you have any idea, especially Dr Diana, what could go on with me?
But the beeing paralyed in sleep thing i found out that is mostly isn´t dangerous, many people have it. Ok it could be dangerous in our case, combined with EDS and other things, but in normal people it´s not a big thing, even when it is not treatable.
February 26, 2012 at 5:39 pm in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #1768judithParticipantI´m kind of scared now, cause i read all the things you were writing. I have EDS, hypermobility type, but I never thought, I would have POTS, even when I already heard that many people with EDS have POTS too.
But when I read this, I found that it´s exactly what I experienced several times.Oh my! Absolutely! I can never sleep on my back. When I fall asleep flat on my back I often have episodes of sleep paralysis, where I seem to wake up, but cannot move, feel very panicked, and want to scream but can’t, and am still asleep somehow, but it feels very much as though I’m awake. This never seems to happen when i lay in a different position, so I just avoid sleeping on my back now. Also, if I wake up but stay lying flat I will feel as if there is a lump in my throat, and I will feel nauseous, but sitting up seems to help. It will lead to vomiting on the odd occasion, and is much worse if I don’t get enough sleep, and the sleep paralysis is also worse if I’m over tired.
I never thought that it has something to do with my position while sleeping. It usually happened when I took a nape in the afternoon. It never really happened at night (luckly, it would scare me even more). Sometimes it´s like I want to move, and I think that I really did, but after a few seconds I realize that I didn´t move, and than I try again and it doesn’ t work. If I try harder and harder I start to panic, cause it doesn´t work. If I stop panic (which is hard 😉 ) and also stop trying to move, this scary thing stops after a while. I don´t no If it stopped after I was able to turn on my side. How do you guys get out of such a situation, except from someone is picking you up?
Since this seem to be a part of POTS and not only EDS I´m kind of wondering if I might have POTS aswell or some of the other conditions which were mentioned her. How do I find out? Is it possible to find out If I have POTS without having this tabletest done?
I´m living in Europe, so some things you recommend might not work here. Actually it was hard enough to get me diagnosed with EDS (took me 7 years of searching ). I don´t think it would be ever possible for me to be tested for POTS or anything like that or even try the diamoxthing. Any advices?Thanks and bye bye
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