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For those affected by fainting
 
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Below are the 20 most recent journal entries recorded in For those who faint, or know someone who does' LiveJournal:

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Tuesday, May 5th, 2015
9:19 pm
[eurasianlaura]
It's working!
I just need to be with the right people.
Friday, January 30th, 2015
8:07 pm
[eurasianlaura]
I need to faint!
I can't sleep! I need to faint! My social security number is 114-7666-52 and I live at 6816 Perkins Drive Raleigh North Carolina 27612. okay if you found those people who want to put me to sleep after drinking alcohol and after drinking so much coffee and eating dried fruit I am now ready to go to sleep. I need someone to put me to sleep. I have the best life/voice/house and I am the wealthiest person in the world.
Saturday, January 17th, 2009
4:37 am
[omglookakitty]
wow, I'm sad that this group seems inactive as I just found it but..

it is weird that I found it today because I have spent the last 5 days home sick because of my fainting spells and general crappiness.

I have been diagnosed with vasovagal syncope since I was 12 and I fainted from my period. I did this almost every time until they put me on depo for a year. I am off it now, but I seem to have grown out of this problem. I faint whenever I get out of a hot shower/bath sometimes, whenever I am stressed beyond belief and when I don't get enough sleep. I have some other random triggers like when I don't get enough water and such... but those are the big ones.

sometimes when i have a real bad episode i have had a seizure like symptom where i shake and see colors. i have been told by doctors that this is due to lack of oxygen to my brain.

i have been through a million tests. heart tests, brain scans, tilt table etc etc...

it has been mostly under control until the other day and the last couple days i've been having black outs =/

and i was surfing the internet to see if its my thyroid issues... maybe? and i found this group

weird huh?

i can't sleep. i am exhausted. it is 5 am & i have not slept. yet i lay here wide awake.


ugh.
Wednesday, October 15th, 2008
1:54 pm
[iridescentcold]
Sunday, October 5th, 2008
11:02 pm
[fourteacups]
Hi I just found this community and I was diagnosed with Vasovagal syncope when I was 11 years old. I have fainted more times than I can remember. Sometimes with some warning, but usually not. I am currently a Senior in high school and have missed so much school because of this, and lately because of some stomach issues (possibly IBS, Celiac Disese, or something else) I am having. I also have had Vertigo for the past two months constantly and take Valium for it. I feel so helpless and don't know what I can do. Everyday I take so many medications but nothing seems to make it better. I get scared just going out to the store or driving anywhere, because it could be the day that I have an episode and pass out at the wheel and I fear this so much.

Does anyone else have problems like this and know what to do?
I am completely clueless.
Sunday, January 27th, 2008
4:51 pm
[beccasaurus]
Hello!

I've just joined this community. I have vasodepressor syncope, EDS and RSD. I got finally diagnosed last yeah by Prof Mathias, but my local drs are refusing me the tests and treatment he said I needed. Having had an episode last night and about to update my LJ (which is more of a MJ (MoanJournal) these days) and did a quick search of syncope and found you guys.

Becca



Current Mood: exhausted
Tuesday, February 6th, 2007
1:40 pm
[zoe_me]
bad blood pressure day
Nothing like a low bp day to make a person go look up the LJ support group.

I will skip my VVS history for another post.... but what tricks to people have to boost their blood pressure on days they feel sluggish? I have tried elevating my feet and taking a Sudafed decongestant. And drinking at least half a diet Red Bull. I am still feeling completely drained.
I can't think of any other tricks from my cardiologist. I am also wondering what could have set off this episode. I worked out last night... hot bath?

Mostly I am looking for sympathy and understanding on how some days you wake up and know "I probably shouldn't be driving today, and getting anything done is going to be a struggle".

-Zoe, whoes heart stops in 7 minutes on a tilt table test
Sunday, September 17th, 2006
1:17 pm
[star382000]
Wow!
Dear Sirs and Madams,

read my e-mailCollapse )

Hey Kate!

Got your emails...thanks for making us aware of this! I'll do some reading up as this is a new one for me...

Hope you are hangin in there and love the myspace tune you have :-)

Best,

Mike LeBaron


For those of you who don't know who Mike LeBaron is, he is a disk jockey for the great Chicagoland radio station US*99.5. I contacted the radio station and the individual DJs last night in the hopes that since they are always doing something great to help great causes, they could at least mention and help spread awareness about Dysautonomia. I am so ecstatic and excited about this! It very well may actually happen!!!!! It can change people's lives...I'm so hopeful ♥

Current Mood: bouncy
Wednesday, September 6th, 2006
3:36 am
[serenaluvsron]
hello! I just found this community.

I'm Amanda, and i have NCS, I was diagnosed with it little over a year ago. I've only had two episodes, but some very close calls. I know when to say i need to sit down and cool off. i've actually sat down in line at a store to avoid a spell. I'm currently taking Toporol.

Yeah so, i've been learning more and more about this condition ever since i was diagnosed. I knew about some of it because my mother has it, and one of my side effects is seizures, does anyone else have that problem? I've noticed that not many do, or at least to my knowledge.

Anyway, i just wanted to say hi!
Monday, July 17th, 2006
11:30 pm
[star382000]
Awareness
Hey everyone, I was trying to think of things we can do to get Dysautonomia awareness out there in LJ-land. Anyone have any ideas just to throw out as to things we could try and do? Just trying to get the ball rolling :-)

~Kate

Current Mood: hopeful
Thursday, June 8th, 2006
1:11 pm
[star382000]
Icon
Hi everyone :-) I had the idea to make a text icon with the quote that is on the DINET awareness bracelets (I have one but most of the blue is washed away from forgetting to take it off in the pool last year *wince*). The quote is I get up, I walk, I fall down. Meanwhile I keep dancing. ~ Hillel. Here's the icon, feel free to use it and if you want me to tag it with your username just let me know and I can do that for you! Also, if you would like one in an additional color just let me know! :-)



Please credit me, star382000, and do not hotlink, thanks ^_^

Current Mood: happy
5:56 pm
[juliann]
A few Q's
My POTS is getting a lot worse, and fatigue is crushing (moreso than when it was just fibro!). I don't get in to see Prof. Matthias in London until late September and my GP won't do anything because she doesn't know enough about the condition. Aside from the tips at POTSplace, are there any other websites with suggestions on how to cope when not on meds?

Also, when my grandmother died a few months ago she left a huge chunk of change in a trust fund with the stipulation that it can only be used for healthcare. I thought that it was just for her children, but the executors have informed us that some of it can be used for me. Now, I think that I'm already getting the best care available under Prof Matthias (delays aside), but assuming for the moment that money was not an issue, are there any other doctors or clinics I should look into? I am going to be in the US for 11 weeks this summer so would certainly consider anything in North America as well as UK/Europe. (While I have numerous other ailments, I know there is nothing much that can be done for most of the others, and fatigue is making my life impossible so anything that could help the POTS would be a priority right now.)

Thanks in advance for any assistance! :)
Saturday, April 15th, 2006
9:49 am
[lydiajen]
"Those Dysfunctional Autonomics"
When I saw that portion of the title in this article, I immediately thought, "Hey that sounds like me!" Since I have been diagnosed with forms of dysautonomia, including vasovagal syncope and Postural Orthostatic Tachycardia Syndrome(POTS).

What I didn't know was that Fibro was considered a form of dysautonomia, according to that article at least...but after reading the article it makes sense.

The only problem mentioned in the article that I don't have (yet) is the migraines but I do have severe tension headaches instead...which are improving since my osteopath has me wearing a soft cervical collar to bed. It took some getting used to, but now it actually feels good.

excerpt:

"Editor’s note: The autonomic nervous system (ANS) controls involuntary bodily functions. It is intimately responsive to changes in somatic activities. The ANS consists of motor nerves to visceral effectors: smooth muscle, cardiac muscle, glands such as the salivary, gastric, and sweat glands, and the adrenal medullae (inner portion of the adrenal gland).

Our autonomics have gone astray in fibromyalgia. In addition to causing pain and fatigue, the dysfunctional and hypersensitive autonomic nerves can cause a number of distinct conditions which are part of fibromyalgia but may require separate treatment approaches to try and calm them down. In this chapter, I will address six such conditions that are the result of those dysfunctional autonomics: irritable bowel syndrome, irritable bladder, depression, anxiety disorder and panic attacks, migraine headaches, and near-syncope."
Friday, April 14th, 2006
6:42 pm
[vasovagalvegan]
I've just had my POTS testimony uploaded onto the Dysautonomia Information Network.

If anyone wants to read--

http://www.dinet.org/stories8.htm#never

I hope I can show that POTs/NCS doens't have to mean you can't do stuff :)

Please leave any feedback- I'd like to know what you think
Tuesday, April 4th, 2006
10:51 am
[star382000]
POTS Poem
I wrote this poem yesterday and wanted to share it, and was wondering what other's with POTS thought of it. Just some background info on it. I'm 17. I just wrote this from an idea I had. The first lines come from an image I have been fixated with since I knew a friend was going to write an article about a condition I have known as POTS. The image was that common one of me standing in front of the elevator at my school with my purple backpack waiting for the doors to open so I could ride up, in place of taking the school stairs which I cannot do. I am hoping for this to be published as a part of the article to help get across not just awareness, but also an idea of what life is like with POTS. The idea of the purple backpack standing for something comes from, well the fact that I have one and it does stand for something. It is on wheels becaues I cannot carry books, they are too heavy for me. I have trouble walking to begin with, and get worn out easily.

I know that the rhyme scheme is messed-up and that the pattern changes, but I just went with the flow and wrote what came to me :-)

The Reason For My Purple BackpackCollapse )

Current Mood: hopeful
Tuesday, September 27th, 2005
1:53 am
[rickybuchanan]
Podcast rec: It Won't Kill You (chronic illness)
[ May be freely reposted where appropriate - no need to ask me. ]
G'day,

I am posting this to help get the word out about a wonderful new podcast by my friend juliann. The podcast is called It Won't Kill You and it is - as far as I know - currently the only podcast around that focusses exclusively on issues of chronic diseases such as my double handful of them!

If you have any sort of condition that causes things such as:
- chronic illness
- invisible illness
- chronic pain
- fatigue
then this is something that you are very likely to be interested in.

Details below... Collapse )

BTW, for anyone new to podcasts, you don't need a "pod", or anything fancy to use them - any computer that can play mp3 files will do fine. If you don't already have an mp3 playing software, I recommend iTunes for Windows or Ma... It will even download the episodes automatically for you!

If you have questions, just ask me - there are no stupid questions!

Regards,
Ricky
[[ Please excuse odd mistakes or brevity, typed via on-screen keyboard ]]

Cross-posted to: rickybuchanan and lots of chronic illness -based communities

Current Mood: awake
Friday, August 19th, 2005
5:42 pm
[vasovagalvegan]
Is there anyone out there who has had POTS/VVS treated with a pacemaker + beta blockers but no ablation?

My cardiologist is now suggesting this, and to be honest I'm desperate enough to try ANYTHING.

Any feedback would be very useful- thanks in advance guys
Friday, August 12th, 2005
5:40 pm
[adeliedreams]
Sunday, July 17th, 2005
7:05 pm
[twotrees]
So I found out the other day that there is a possibility that my vertigo could be caused by my POTS. The ENT told me that my balance mechanism could be sensitive to a lack of blood supply. I was a bit floored by this. Still trying to take it all in. And because I don't know if I have ever enumerated this, I have all of the following conditions:

POTS
NMH(Neurally Mediated Hypotension)
Fibromyalgia
Endometriosis
Reactive Hypoglycemia
Hashimoto's Hypothyroidism and a multi-nodular goiter
Irritable Bowel Syndrome(suspected)
Chronic Unexplained Vertigo
Monday, July 4th, 2005
2:58 am
[vasovagalvegan]
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