I´m new, and need help in understanding my symptoms

[judith]

Hi,

I just decided to start a new topic, even when I already answered to another topic. I just thought that my questions do not only belong to the topic, I was writing them in. Sorry, don´t want to be a spammer :D.

Fist of all I have to say, that I´m sorry for my bad english, I´m not a native speaker. I come from Germany and I have EDS, hypermobility Type and secondary fibromyalgia.

I saw the topic about feeling paralyzed while sleeping on the back, which kind of alarmed me. It exactly described what I experienced several times (until now I just thought it´s kind of a nightmare). Here is what I found in that topic, which could have been my words.

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.

The think is, that 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.

The only thing I can say is that I very often feel fatigue or just sick in any way, having trouble with my stomach and sometimes I have a really bad head age above or behind my eyes (just one or sometimes both), and some other things, like light sensibility, heat intolerance (like I can´t take it so be out in the heat of the sun, cause it mostly makes me feel very sick). The doctors and I were thinking it is because of fibromyalgia. Well actually I haven´t told my doc about all these things ( he just know some of it ) cause I don´t want him to think, I´m crazy. Most of the things I just accept.

Sometimes I have severe pain in my chest and it feels like pressure on my chest, combined with nausea and the feeling that I can´t breath deep enough. It for example happens when I sit down and take a rest and / or after beeing physically or psychically stressed, which I though is because of a blockage of my spine. It sometimes gets better, when I lay down (does this make any sense?? it seems to be the exact opposite to your experience???). On the other hand I get treated against high blood pressure, since I have had a 24/h blood pressure check up. I don´t really remember if my BP changes much after going to bed, but i could figure that one out. Some of the symptoms got better since I get this medication, but they aren´t completely gone, and especially the nightmare-feeling-paralyzed thing hasn´t changed.

Dr.Diana do all that things make any sense to you? Can you help me, or do you have any advice for me??? (please :D)

Thanks and bye bye

[PalominoMorgan]

Hi. Welcome. The poor man’s tilt table test ou can do at home is to take your pulse while sitting at rest. Then stand and take your pulse again. Continue standing and taking your pulse. If your pulse increases by over 30 beats per minute that is considered positive for POTS. The easiest and most accurate way to do this is with a pulse ox because it gives an instant read out of your pulse. They are about $50 here in the pharmacy/drug store.

Hope this helps. Let us know how the “at home” version goes.

[judith]

Hi,

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.

[PalominoMorgan]

I haven’t read it yet, but her Dr. D the sleep thing is explained by neurogenic shock. I know when I looked it up it definitely fit. Maybe that will help explain the sleep paralysis for you.

[Dr. Diana]

Hi,

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.

Hi, Honestly, Hon, you sound just like us. I can pass a poor man’s tilt test, but my heart rate went from 75 (supine) to 162 in 10 minutes on a slant!! So the poor man’s tilt table can be helpful, but can give us false negatives, too.
Your episodes of “paralysis” sound like ours, too. Palomino is right. I believe we are going into neurogenic shock due to pressure on our vegas nerve combined with hydrocephalus pushing our brain on our cranial nerves. The vagus nerve doesn’t serve the adrenal glands, which is why we can snap out of it if someone gets our adrenals going (moves us, shakes us, etc).
This pressure is likely a combination of the hydrocephalus and CCSVI (an enlarged IJV) pushing on your vagus nerve. Because the vagus nerve is posterior, it is more affected when we lie flat. Answer? Don’t lie flat. 🙂 We usually sleep somewhat on our sides, and elevated. I’d highly recommend raising the head of your bed. And tell people you live with to sit you up and get you going if they find you like that. Then you need fluids and caffeine. Any hesitation, call 911. There is a chance that CCSVI angioplasty can decrease some of the pressure, but we need to get some inflammatory cytokines under control first. Cool? Hang in, OK? You are surrounded by others going through the same thing. 🙂 Big hug, Diana

[judith]

Hi

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.

[PalominoMorgan]

My paralysis episode 3 weeks ago was while lying on my right side. And until reading a post I forgot that it felt like I was having seizure activity in bed last night.

[judith]

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 ).

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