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Worried About Little Sister...


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Hi Everyone,

My little sister is 20 years old and is going through some weird health issues right now that doctors are trying to figure out. I've done a lot of reading about dysautonomia over this past year and I don't think what she's going through is related to it...but I wanted to see if any of you have gone through similar things just in case.

She had a seizure while getting her hair done about 4 weeks ago. (Never had one before.) Her eyes rolled back in her head and she started shaking and then completely blacked out. ER docs did a CT scan and said it looked fine. Her blood glucose and other levels were all fine too. Since then, she's had horrible headaches, a lot of dizziness, and extreme fatigue. She had an EEG and it came back abnormal. The doctor put her on anti-seizure meds and is having her get an MRI to make sure she doesn't have a brain tumor. She went to a doctor's appointment yesterday and fainted at the office. I've been asking her if she's felt her heart racing or if they've noticed any bp changes. She said no so far, but I don't think they've been monitoring it super closely.

I know seizures aren't generally a part of dysautonomia, but I'm just wondering if any one else has gone through similar things and has POTS or some other form of dysautonomia. I'm trying to not even think of the possibility of a brain tumor because I don't even want to go there. Luckily the MRI is tomorrow so hopefully we'll get answers soon. We're hoping this is just "idiopathic" seizures and the meds will keep everything at bay. I just feel so bad that's she's feeling so terrible. I know exactly what she's feeling like (minus the seizure). My poor mom is a wreck. She's been worried about me since I've been doing poorly for the past 4 months and now she's terrified about my sister. Anyway, just thought I'd throw this out there to see if anyone has gone through something similar.

Thanks!

Heather

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Hi, Heather. No idea what's going on with your sister, but just wanted to say I'm so very sorry for both of you to have to deal with this. Please keep us posted here and know you're on my heart, as is your sister.

My son had seizures as a baby. I know how scary they can be. Hang in there.

Lindajoy

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actually, some people do experience seizure-like episodes with some types of autonomic dysfunction--others here sometimes experience paralysis

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Please read here http://www.dinet.org/NCS/ncs.htm (from the main DINET site)

"What is neurocardiogenic syncope?

Neurocardiogenic syncope is a temporary loss of consciousness associated with a drop in arterial blood pressure, quickly followed by a slowed heart rate (Grubb & McMann, 2001, p. 133).

Neurocardiogenic syncope (NCS) is also referred to as vasovagal syncope or neurally mediated syncope. The terms are used interchangeably throughout this web page.

What are the symptoms of NCS?

Neurocardiogenic fainting usually occurs while standing. Emotional stress, stressful condition and pain may trigger an episode, especially among the young (Shah, Gupta & Lokhandwala, 2003). The onset may be abrupt or associated with warning symptoms such as fatigue, weakness, nausea, sweating, pallor, visual disturbances, abdominal discomfort, headache, pins-and-needles, lightheadedness or vertigo (Deering, 2003). Presyncopal patients may also complain of palpitations, vomiting, disorientation, and difficulty speaking clearly or coherently (Grubb & McMann, 2001, p. 60.). Other symptoms that may present before a faint include feeling either warm or cold, tremors, yawning and having a bluish/purple or red coloring to the skin (Alboni, Brignole, Menozzi, Raviele, Del Rosso, Dinelli, Solano & Bottoni, 2001).

During the faint "seizure-like" activity may occur (Grubb, Gerard & Roush, 1991). This convulsive activity is thought to be distinct from a seizure disorder."

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I would wonder if she was using a chemical on her hair or had a reaction to the chemical soup and stink in most hair salons? People with MCS reach a limit to their ability to handle toxic chemicals suddenly some times; I know people who have had seizures from these situations.

If she was actually using a chemical on her scalp, which absorbs so well it is sometimes used to absorb medications, then you might have a clue.

You are a great sister and I commend you. Good luck to your sister and don't stop searching!

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First thing that comes to mind is ----do you both have EDS. It could be that her placing her neck in the wash bowl - pressed on her brain stem - if there is a Chairi malformation and it triggered an event. I have to be super careful with my neck and what I lie it on - because, even though I don't have the required amount of drop of my cerebral tonsils to qualify for the DX - I have issues non-the-less. I do also have a brain tumor - that they are watching - it is growing - but, they don't think it is causing my issues. When I first started having a really bad flare with POTS, I was under a whole lot of stress and that's when the brain tumor was found. I guess depends on where it is and what it's pushing on - if there are issues or not. They don't want to do brain surgery on you - unless it's absolutely necessary. So, even if there is one - doesn't mean its something that may be that critical. Could be your sis - just has autonomic dysfunction too. Me and my sis. and her kids all do --and all of us present totally different.

Issie

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Thanks for your input and kind words! I really appreciate it.

Issie, she hasn't been checked for EDS yet. I tried to ask her if she had any of the freaky bendy joints that I did when I was getting diagnosed, but she didn't seem to have it too much. My mom asked the neuro nurse practitioner they saw if she could have something related to my POTS and the woman had to google POTS. (haha reminds me of that funny cartoon that was posted here awhile back...) They didn't seem to think so, but I just find it odd to have such an overlap of symptoms between us. My great grandmother did have what they called idiopathic seizures later in life and had to be on meds for it. However, I just want to make sure they aren't missing anything else. Like I said, it just feels odd that that we have so much in common symptom-wise. If the MRI comes back clear and she continues to have troubles, I'm going to push my mom to bring her down here to get evaluated.

One question about chiari...I've read a lot that often you need a standing/upright MRI to see it in some people. My neurologist had said that they didn't see a chiari malformation on my MRI but it was a laying down one. I get headaches almost every day and some feel like someone is hitting me with an ice pick in the back of my head. I get a lot of neck stiffness and pain too.

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I think there are varying degrees of dysfunction and symptoms in regards to EDS. Some are worse than others.

I wish I could have a sitting or standing MRI because with a lying one - I have a drop - but, not enough to classify it as true Chairi. Some clinics are however, calling some with the amount of drop (if there are symptoms) Chairi 0. But, doctors are not thinking that the amount of drop I have is the issue and I sure wouldn't want to do surgery or anything like that - not with mine being so mild. I just am careful what I do and how I lie and sit.

The neck stiffness and pain comes from tensing your muscles to hold your head up and hold yourself together. Us with EDS have this. Since there is a collagen dysfunction and things are too lax - we tense up and that causes muscle fatigue and pain. Some have used a collar to help with this. But, long term use, could potentially cause more weak muscles and then you might not could hold your head up without assistance. I try to use and strengthen my muscles, although very carefully to avoid strain. I would however, like to get a collar to use while riding in the car - for some reason, I have more issues when in a moving vehicle.

Issie

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What a great sister you are! It is such a helpless feeling to watch someone suffer and not be able to do anything about it. Has your sister tried monitoring her heart rate while laying down and then again when standing? This might give her some indication if it is POTS.

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HI Heather--

So sorry you guys are dealing with yet another puzzling health issue! I would think there's a good possibility that you and your sister share some physical quirk that manifests differently--my own sister and I went through a similar experience several years ago when she began to have serious hand/arm tremors (she began to refer to herself as Twitchy McTwitcherson) whenever she exerted herself or was tired, stressed, etc.

She was tested for everything including tumors, Parkinson's and caffeine toxicity, but the cause was never really identified, and they labeled them as Essential Tremors. However, we continue to wonder if she has some form of dysautonomia that just isn't presenting in a typical way. In any case, she's doing great now with a low dose of beta blockers...we just don't let her pour drinks or carry the crystal! :-)

Hope you guys get some answers soon and that your sister is doing well...

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I have both EDS and seizures associated with my POTS. My little sister is going through something similar: I've been diagnosed with EDS, she hasn't yet, but she is having bizarre symptoms. Realistically though, I can look at my sister, see her Marfanoid body type and know she has EDS and from there reason that her symptoms are probably caused by dysautonomia. She might not necessarily have very flexible joints: my sister only has one or two.

If your sister has no such 'dead giveaways' I think it'd be really smart to have her evaluated. Don't rely on the doctors to 'discover'it, it might take them forever. If you suspect her symptoms are dysautonomia, and her doctors are coming up blank, steer her in the correct direction.

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hholmes13

“She had a seizure while getting her hair done about 4 weeks ago. (Never had one before.) Her eyes rolled back in her head and she started shaking and then completely blacked out.”

You just described my Son#2 exactly who has EDS, POTS/NCS and his is caused by low blood pressure, and is Cardiac Arrhythmia induced. He is on Florinef, DDAVP, Midodrine, and sometimes beta blockers. He has RAS (reflex anoxic syncope/seizure). He was on seizure medications at age 20-22 which did not work too well, except Dilantin aka a class 1b antiarrythimic. Keppra made his condition worse! He has had many EEG’s and all indicate right center brain activity due to low blood flow POTS, and confirmed by several HUT.

“I know seizures aren't generally a part of dysautonomia, but I'm just wondering if any one else has gone through similar things and has POTS or some other form of dysautonomia.”

Seizures can be part of dysautonomia though secondary to other issues.

He has sycope in surpine positions routinely, and night time syncope too which sometime comes as RAS. This was discovered in college by his roomie and reported to me. I was quite supprised and so was the nerourolgist along with his Cardiac EP. He slept in his own bedroom till he went off to college so we did not know this was happening. Though now we realize he did have some symptoms like bitting his lip or cheek at time in the night. I have kept a detailed record on all his issues and events from age 18 till present and now continue with the assistance of his wife.

DADofPotsSon

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My mother and sister were thought to be having seizures even though the episodes left no mark on the brain so they were not seizures. They have full body convulsions (even face muscles). Its actually not a rare symptom of dysautonomia its just rare to have to intense thats its mistaken for a seizure.

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Wow, I had no idea how common seizures were with autonomic dysfunction. Crazy!

Well, good news...my sister's MRI came back normal so no brain tumor! Yay! Now we just need to figure out why the poor thing feels so awful still. I tried to talk to my mom about the possibility of autonomic issues last night, but she's convinced that she still feels horrible 4 weeks later because of the seizure. I've been trying to research this stuff...that seems like an awfully long time to have after-effects. I wouldn't know though as I've never experienced one before.

Thanks so much to everyone with all of their input!! I will definitely keep all of this info in mind and maybe try to push them to come down here to Rochester for a more thorough work-up. Especially if she doesn't start feeling improvement soon.

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There is a form of mitochondrial disorder whereby seizures are part of the disorder. If you'd like, I could get that information to you. I don't want to inundate you with "Hey, it could be this or that" 's. Let me know, though, and I'll get it to you.

Lindajoy

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Before I had POTS, I had

neurally mediated syncope. In 1990, I was at Six Flags with my family. I had a LOT of coffee that morning, sugar from pancakes, went up a tall tower and came down in a very fast elevator. Went into a nearby store to cool off..thought I was having a panic attack, then collapsed in front of my husband with a full seizure. Very scary, but it was my the one and only one I ever had.

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