Round 2

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Re: Round 2

Postby highpriority4 on June 14th, 2012, 2:52 pm

Yuliasir wrote:Hi Amy,
unfortunately every thing becomes a first time once...
I also had only one panick attack on my life after long term stress - and it took me 3 month to recover and first 5 to 6 weeks I felt like the life would never be the same... and in few month after recovery I got BFS onset...
Long term stress is an awful poison. I wish you to overcome it as soon as possible.
regards
YUlia



Hi Yulia!!

Thanks for the comment...it makes me feel MUCH better, knowing that it is possible this was a one time panic/anxiety attack, & that it won't necessarily happen again, as long as I try things to reduce the stress that caused it to begin with. Thank you for the reassurance!! :)

~*~Amy~*~
Aint no, rhyme or reason, no complicated meanin'
Aint no, need to overthink it, let go laughin'
Life dont go, quite like we planned it, we try so hard to understand it
Irrefutable, indisputable, absoluteable, totally beautiful fact is, Psssh
It happens...
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Re: Round 2

Postby mike fla on June 14th, 2012, 2:54 pm

Xanax helped me alot in my first month of BFS. My problem was that it only lasts about half a day and then your twitching picks up. I prefer klonopin which lasts longer and is easier to ween off of once you are ready to get off the meds.
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Re: Round 2

Postby highpriority4 on June 14th, 2012, 2:56 pm

mike fla wrote:Xanax helped me alot in my first month of BFS. My problem was that it only lasts about half a day and then your twitching picks up. I prefer klonopin which lasts longer and is easier to ween off of once you are ready to get off the meds.


Hi Mike!!

It's not the twitching that is bothering me...over 4 yrs of twitching, doesn't phase me anymore :wink: It is the anxiety attack that came out of the freaking blue & slammed me Sunday night...whoa, even when BFS 1st started, I didn't have an anxiety attack...wow they suck!

~*~Amy~*~
Aint no, rhyme or reason, no complicated meanin'
Aint no, need to overthink it, let go laughin'
Life dont go, quite like we planned it, we try so hard to understand it
Irrefutable, indisputable, absoluteable, totally beautiful fact is, Psssh
It happens...
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Re: Round 2

Postby bobajojo on June 14th, 2012, 3:45 pm

Amy,
Welcome back! I'm sorry about your anxiety attack. I can relate to it 100%. I actually had a panic disorder when I was in my 20's and have had my fair share of anxiety attacks. For me they were well before BFS and I've conquered them. They suck. Just remember, no one has ever died from an anxiety attack. If it comes back, have the attitude of "OK, let's get this over with. Bring it on." It worked for me. I hope you find some relief from them. -Matt
Over 10 billion twitches since May 2011.
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Re: Round 2

Postby highpriority4 on June 14th, 2012, 9:46 pm

bobajojo wrote:Amy,
Welcome back! I'm sorry about your anxiety attack. I can relate to it 100%. I actually had a panic disorder when I was in my 20's and have had my fair share of anxiety attacks. For me they were well before BFS and I've conquered them. They suck. Just remember, no one has ever died from an anxiety attack. If it comes back, have the attitude of "OK, let's get this over with. Bring it on." It worked for me. I hope you find some relief from them. -Matt


Hi Matt!

It sucked, BIG TIME...I'll take BFS any day, over anxiety attacks :( :(

I wonder, is it possible that it will only happen once, and not again? *prays* :)

~*~Amy~*~
Aint no, rhyme or reason, no complicated meanin'
Aint no, need to overthink it, let go laughin'
Life dont go, quite like we planned it, we try so hard to understand it
Irrefutable, indisputable, absoluteable, totally beautiful fact is, Psssh
It happens...
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Re: Round 2

Postby raindog on June 15th, 2012, 6:04 am

Very sorry to hear about the stress in your life Amy and of course the return of the twitching, they have a habit of doing that don't they :x

Anyway when things are getting on top of me i put on my ipod... not too loud and listen to sigor ros , i have the full discography and go and do a bit of gardening or go for a walk down the lane....totally immersed and miles away. Feel like a new man in no time, kind of like my version of meditation. He may not be your cuppa tea but worth a try or try your taste in chill out music

http://youtu.be/8LeQN249Jqw

http://youtu.be/_sUVm77WjE0

http://youtu.be/NUysiCX-XZQ

Best wishes
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Re: Round 2

Postby highpriority4 on June 15th, 2012, 8:19 am

raindog wrote:Very sorry to hear about the stress in your life Amy and of course the return of the twitching, they have a habit of doing that don't they :x

Anyway when things are getting on top of me i put on my ipod... not too loud and listen to sigor ros , i have the full discography and go and do a bit of gardening or go for a walk down the lane....totally immersed and miles away. Feel like a new man in no time, kind of like my version of meditation. He may not be your cuppa tea but worth a try or try your taste in chill out music

http://youtu.be/8LeQN249Jqw

http://youtu.be/_sUVm77WjE0

http://youtu.be/NUysiCX-XZQ

Best wishes


*hugs* raindog....how have you been?

Yes, BFS is always here...always ready to pop (thump, flutter) back up at the slightest opening in a person's guard lolol :lol:

I actually have been trying meditation...I really kind of like it :D :D :D

~*~Amy~*~
Aint no, rhyme or reason, no complicated meanin'
Aint no, need to overthink it, let go laughin'
Life dont go, quite like we planned it, we try so hard to understand it
Irrefutable, indisputable, absoluteable, totally beautiful fact is, Psssh
It happens...
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Re: Round 2

Postby mwagner on June 15th, 2012, 10:57 am

Amy,

I have a master's in psychology, and I know one of the greatest fears with panic disorder is the reappearance of an anxiety/panic attack - especially if it's during an inopportune time (like while you're driving, or when you're in public, etc.). Which of course, naturally, fuels your underlying anxiety, which caused the panic attack in the first place, even more.

If I were you, I would talk to a professional about this, and work on reducing your anxiety as much as possible, and discuss possibly taking medication (if you haven't done these things already). The most important way to prevent a panic attack is majorly reducing your anxiety (I know you already realize that).

Now, your anxiety could be circumstantial (like something specific going on in your life right now that is causing great levels of stress, that you can't control) -- and I know how difficult it is to control anxiety in those cases. I had a biopsy in January, and was so fearful during that time (results were benign, thank goodness) and as much as I wanted to control my anxiety, it was very difficult. Meditation wouldn't work in my case, because it was so circumstantial, and until I knew the results, I couldn't get it off my mind. In these cases, medication can really help. I don't advocate taking Benzos (Xanax, etc.) for no reason, or say for twitching alone (which isn't your case), or even in the case of something like Generalized Anxiety Disorder. But, if this is circumstantial, and you just need to get through a hard time in your life, benzos can go a long way for preventing future panic attacks. A doctor would work with you in tapering you off when needed. That's really what they're made for.

Just my two cents.

Mitra
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Re: Round 2

Postby highpriority4 on June 15th, 2012, 11:23 am

mwagner wrote: benzos can go a long way for preventing future panic attacks. A doctor would work with you in tapering you off when needed. That's really what they're made for.

Just my two cents.

Mitra


Thanks Mitra!

I really am not a medication person...but Sunday night, when this anxiety attack hit the 2 hour point, I was all but begging for something, ANYTHING to make it stop. :(

For those of you who have had panic/anxiety attacks....why did this one last so long?

Just to clarify, I'm not stressing over this incident too much...I've been at this game long enough that even though yes being the 1st time this has happened it scared me, & it has me aprehensive...I'm still not overreacting to it. Right now I guess...I'm just trying to find the best way to prevent it from happening again. I do believe it is just a stressful time in my life, & that is what triggered this. Amazes me though, that after 2 plus yrs with rarely any BFS symptoms, 1 anxiety attack & the BFS symptoms are back full force. I can say FOR SURE, that anxiety increases BFS symptoms.

~*~Amy~*~
Last edited by highpriority4 on June 15th, 2012, 2:35 pm, edited 1 time in total.
Aint no, rhyme or reason, no complicated meanin'
Aint no, need to overthink it, let go laughin'
Life dont go, quite like we planned it, we try so hard to understand it
Irrefutable, indisputable, absoluteable, totally beautiful fact is, Psssh
It happens...
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Re: Round 2

Postby mwagner on June 15th, 2012, 11:56 am

Is there any way you could get a prescription and have it around in case you do get another panic attack? That might do the trick and might make you less apprehensive about another one happening (because you'd have a potential fix for it, should it happen again). 2 hours is a long time!!

Either way, you have such a great attitude. I'm so impressed by the positivity you're spinning on all of this. And, yes, I'm starting to believe more and more than BFS can be anxiety induced. Maybe it's the way we breath or the lack of sleep or something that makes us twitch when we're more anxious. If someday folks start to really research BFS - it would be great if they looked at the relationship between anxiety and BFS.

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Re: Round 2

Postby highpriority4 on June 15th, 2012, 12:29 pm

mwagner wrote:Is there any way you could get a prescription and have it around in case you do get another panic attack? That might do the trick and might make you less apprehensive about another one happening (because you'd have a potential fix for it, should it happen again). 2 hours is a long time!!

Either way, you have such a great attitude. I'm so impressed by the positivity you're spinning on all of this. And, yes, I'm starting to believe more and more than BFS can be anxiety induced. Maybe it's the way we breath or the lack of sleep or something that makes us twitch when we're more anxious. If someday folks start to really research BFS - it would be great if they looked at the relationship between anxiety and BFS.

Mitra


They gave me a 15 day prescription for Xanax .5mg, which I did fill, but I haven't taken any, and I hope I don't have to. I'm kinda worried about taking it, I've heard some not so fun things about Xanax. At the ER, they gave me Ativan through IV...and I don't have any complaints about it, in fact, it was a savior for me, because by the time they got all the blood/urine tests back to prove I wasn't ODing on something (LOLOL), I had been feeling terrified (of nothing, like I literally knew I had nothing to be scared of, but my body was totally freaking out) for over 3 hrs...I don't know why it lasted so long. From what I have learned so far, anxiety attacks should usually pass within 15-30 mins, tops...this one would just not stop for some reason :(

Anxiety, NO DOUBT, DEFINITELY, triggers BFS symptoms, or makes them worse...I believed this 100% before, now I will swear to it. I've had facial twitches (one of my least favorite, imagine that lolol) almost 24/7 since the anxiety attack. I ignore the twitches though, they are the same exact twitches I've had for years & years, they are just hyperactive right now, nothing I can't handle, and they WILL go away, they always do :) :)

~*~Amy~*~

~*~Amy~*~
Aint no, rhyme or reason, no complicated meanin'
Aint no, need to overthink it, let go laughin'
Life dont go, quite like we planned it, we try so hard to understand it
Irrefutable, indisputable, absoluteable, totally beautiful fact is, Psssh
It happens...
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Re: Round 2

Postby Kev74 on June 15th, 2012, 1:26 pm

"I had been feeling terrified (of nothing, like I literally knew I had nothing to be scared of, but my body was totally freaking out) for over 3 hrs...I don't know why it lasted so long. From what I have learned so far, anxiety attacks should usually pass within 15-30 mins, tops...this one would just not stop for some reason"

I've experienced that too when I had my panic attack, Your body is in fight or flight mode. It feels like your being chased by an invisible lion. These things take time to get over. I've had one panic attack ONE and it turned my world upside down. It's been over 3 months and I'm still not fully recovered. My biggest problem right now is dealing with health anxiety which never existed before my attack. My understanding with Panic Attacks is there are 2 fears associated with it. There's the first initial fear you get with it happens, this is not something you can control. The second fear is perpetuated by your own thoughts and worry over it that's what keeps the panic going, this is something you can control.

"Anxiety, NO DOUBT, DEFINITELY, triggers BFS symptoms, or makes them worse...I believed this 100% before, now I will swear to it."

My BFS started a month after my panic attack and dealing with a ton of anxiety. I think there is good reason to believe anxiety CAN cause BFS (in some cases). The biggest problem for me is accepting that its anxiety and not something else.
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Re: Round 2

Postby highpriority4 on June 15th, 2012, 2:16 pm

Kev74 wrote: I've experienced that too when I had my panic attack, Your body is in fight or flight mode. It feels like your being chased by an invisible lion. These things take time to get over. I've had one panic attack ONE and it turned my world upside down. It's been over 3 months and I'm still not fully recovered. My biggest problem right now is dealing with health anxiety which never existed before my attack.


I thinking I'm dealing with it pretty well...for the first 3 days after it happened, I felt a little on edge, like I was constantly fighting to keep it from happening again, but these last 2 days, I've felt pretty much back to normal, except of course for the reoccurance of all my fantastically wonderful BFS symptom friends. :wink: :wink: Nothing about BFS scares me though, and I am SO THANKFUL for my past expierence with BFS, because if this was all just starting, after this anxiety attack, I'd probably be a mess!


Kev74 wrote:My understanding with Panic Attacks is there are 2 fears associated with it. There's the first initial fear you get with it happens, this is not something you can control. The second fear is perpetuated by your own thoughts and worry over it that's what keeps the panic going, this is something you can control.


I can defintely understand that...because I am a little nervous about it happening again, but I KNOW that will probably just trigger another attack, so, I'm trying super hard not to think about it, at all, period.


Kev74 wrote:"Anxiety, NO DOUBT, DEFINITELY, triggers BFS symptoms, or makes them worse...I believed this 100% before, now I will swear to it."

My BFS started a month after my panic attack and dealing with a ton of anxiety. I think there is good reason to believe anxiety CAN cause BFS (in some cases). The biggest problem for me is accepting that its anxiety and not something else.


You, like all of us, were already more prone to BFS symptoms, but I believe 100% that anxiety DOES trigger a good go around with BFS symptoms. Lets face it, all of us BFSers have health anxiety, if we didn't we wouldn't be here. Did you read my post about my Neuro appt? If not, you should....he went into great detail about how EVERYONE twitches, some of us are just more aware of it, once we become aware of it, is when it spirals out of control. No one can say that their 1st twitch was a constant 24/7 mega hotspot that instantly caused them to panic. It starts as a twitch, and a google, and bam, all over twitching and panic...yucky cycle.

~*~Amy~*~
Aint no, rhyme or reason, no complicated meanin'
Aint no, need to overthink it, let go laughin'
Life dont go, quite like we planned it, we try so hard to understand it
Irrefutable, indisputable, absoluteable, totally beautiful fact is, Psssh
It happens...
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Re: Round 2

Postby mwagner on June 15th, 2012, 3:29 pm

Amy,

I have taken xanax many times in my life for various anxiety-related reasons (in fact, I take it once a week to sleep - which my doc okay'd, since I sleep so solidly on it). There is nothing to be afraid of with it - it's just like Ativan in my opinion. It doesn't have any crazy side effects, except sleepiness for me, if I take too much. So, if you feel a panic attack coming on, don't be afraid to take it. It will force your body to relax, which is really good in that situation.

Mitra
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Re: Round 2

Postby raindog on June 15th, 2012, 4:21 pm

highpriority4 wrote:
raindog wrote:Very sorry to hear about the stress in your life Amy and of course the return of the twitching, they have a habit of doing that don't they :x

Anyway when things are getting on top of me i put on my ipod... not too loud and listen to sigor ros , i have the full discography and go and do a bit of gardening or go for a walk down the lane....totally immersed and miles away. Feel like a new man in no time, kind of like my version of meditation. He may not be your cuppa tea but worth a try or try your taste in chill out music

http://youtu.be/8LeQN249Jqw

http://youtu.be/_sUVm77WjE0

http://youtu.be/NUysiCX-XZQ

Best wishes


*hugs* raindog....how have you been?

Yes, BFS is always here...always ready to pop (thump, flutter) back up at the slightest opening in a person's guard lolol :lol:

I actually have been trying meditation...I really kind of like it :D :D :D

~*~Amy~*~


Amy ive been coping well enough to continue most of my life as normal. Got shut of the muscle stiffness and fatigue and a fair bit of cramping with the Low dose Naltrexone. On the downside ive started to get some quite severe what i'm sure is neuropathic nerve pain and it does seem to be progressing ...nothing seems to touch it when its bad so i often find myself resorting to standing in a luke warm shower for as long as it takes to ease it a bit, unfortunately this can be in the early hours of the morning, I see my neuro in 3 weeks and i hope to talk him into prescribing me Mexiletine as its been used for such pain in PNH see link below

http://www.benthamscience.com/cmp/sampl ... wabara.pdf

If i have no joy then i have a back up plan

Image

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Re: Round 2

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