Christian_88
19-04-10, 13:44
Hi Everyone-
Greetings-My name is Christian & I live in Philadelphia PA (USA)-& so glad to be with all of you-:smile:
I first posted this in the "introduce yourself" forum- but, since I'm looking for some "feedback", I decided to post this here- Hopefully-some of you out there have something at least....."similar" to what is worrying me...& causing such great anxiety-!:winks:
My "health issues" started after a bad bout with the flu this past November- Shortly after, I developed myoclonus...(strong muscle contractions)--in my back, while lying down-I mean I thought I was having a seizure--left side, then right side! Went to ER---& of course the ER Drs. know "next to nothing"...about neuro issues!:wacko:
Finally...went to a terrific neurologist here in Philadelphia....(actually TWO--one the "chief neuro"(epilepsy specialist) & the other one....a "movement disorder" specialist- They examined me...gave me a 'complete workup'-
An EMG---TWO MRIs..(Brain and cervical spine)-blood test for thyroid-TWO EEGs...(one the 'regular one'-one 24 hrs)-(I Had this because I was getting "Brain zaps"-! Like a mild "electric shocks in my brain! Anyone ever get these?)- But...my tests.. --ALL..."normal"...(with exception of what neoro expected---some minor spinal arthritis--but everything..."normal"-:biggrin::biggrin: "official diagnosis"..."Benign positional myoclonus"! (In the same category as "BFS"..."Benign Fasiculation Syndrome")-- (I also get fasciculations and twitches)--
-In other words...the really "bothersome"...myoclonus....ONLY happens when I am lying down! not good for sleeping!:shrug:
Anyway-I was so 'relieved'...& happy---I thought I had some fatal neuro disease--(Like ALS...or myathenia Gravis)-:scared15:
-'benign'....('idiopathic' they say)--BUT- BOTH my neuros---said this would eventually go away---! (This was back in January)---
To sum things up----about 3 weeks ago--started having...3 or 4 days with NO symptoms...("progress, I thought)--!
I thought it was gone! (Like the neuros said)---But...it comes back....like a snake lying in wait!:ohmy:
Then....I'll have 2 or 3 'bad days'....--But--at least...I'm getting some good days! Only meds I take for this..is Valium! AND...strangely...to help me get really drowsy for sleep---I use "Antivert"...'Meclizine'...an antihistamine used for vertigo! a 25 mg tablet taken at 5:30 before dinner--has me "zonked"....by 10 PM...(When I take my Valium, which is every nite)-I should add...I ONLY take the "antivert',....when I feel I may have a problem getting to sleep--! Otherwise ..I take one or two...25mg Benadryl-
Before I finish---now...that I have been thourougly tested...& found normal...I STILL worry! I HATE when..I go to bed at nite..& the "Trunk"...myoclonus starts! (I can handle arms and legs)--Because...it shakes my neck,...head,..AND...THE WORST...MOST FRIGHTENING THING! (I saved this for last....see if anyone else has this as well as the regular myoclonus)---While lying on my back...& falling off to sleep...I awaken...GASPING FOR AIR!:scared15: What happens is the abdominal myoclonus starts....& the :whistles:muscle movements..in the abdomen...start always during the respiratory expiration! This....abdomen myoclonus...is like a 'punch to the stomach"...& louses up my respiration----temporarily....causing me...to gasp IN for air!
Thankfully--This does not happen too much---!
It has improved....(it 'spread' to arms & legs....thighs...biceps)---but have 'good days'...& 'bad days'---not happening all the time (some minor cramping)---
Anyway--what REALLY bothers me....is when the myoclonus is in my TRUNK..(back...chest....abdomen---neck....& sometimes into face! I do have "hemifacial spasm"...which is effectively treated with botox....every 6 months!)
BUT---this darn....myoclonus.....when it goes into my trunk...& abdomen..---& I get these "breathing issues"...! I just wanna sleep!
I am tired of this panic! (As is my poor wife, who has been so supportive and patient)-
I am glad to be here & hope to get good feedback from others! Often...knowing you are not alone with a condition...relieves the fear-!
For me, as I am sure for others here--just hearing from someone else-who has had or is now experiencing something similar is sooo...."reassuring":yesyes:
--And. ....I hope I can be of help & assurance to others!:bighug1:
I DO hope I hear from others...with a similar condition....(Myoclonus the Drs--have no clue as to why it's happening...BUt they tell me....it is nothing to worry about AND it will go away!:D)--
And---that "breathing" thing....where the myoclonus causes the abdomimal muscle to contract forcibly, taking my breath away-!--Man, that thing really bothers and upsets me!-! Anyone else get that?
Well--Sorry I went on so long....& was verbose! (I am a writer by profession-)--go out to California in winters--past winter when this first started..(had a "
bad night).AND..I came back from LA...to Philadelphia....3,000 miles....5 hr flight....THE VERY NEXT DAY! That's how .."panicked"...I was (BEFORE I saw my neurologists)--:scared15:
This is just the "latest" of my "worrisome"....health issues! I also have "Mitral Valve Prolapse"...& get occasional irregular heartbeats...And SVT....(I take Tenormin for that)---I finally have learned to "live"...with that--My Tenormin helps greatly with that-
-NOW..This "neuro issue"...hits me....& I have NO idea WHEN...it's going away? (Anyone think--like me--it's related to me having a bad case of the flu--right before?)
-Thank all of you for reading this! My heartfelt gratitude for your time--Hoping to hear---IF any of you would like to talk---e-mail me......& I can give you my phone #----I NEED to hear other people with similar stories! My e-mail is
Christianheimat@yahoo.com (http://www.nomorepanic.co.uk/mailto:Christianheimat@yahoo.com) Take care..& God bless--regards--Christian :)
Greetings-My name is Christian & I live in Philadelphia PA (USA)-& so glad to be with all of you-:smile:
I first posted this in the "introduce yourself" forum- but, since I'm looking for some "feedback", I decided to post this here- Hopefully-some of you out there have something at least....."similar" to what is worrying me...& causing such great anxiety-!:winks:
My "health issues" started after a bad bout with the flu this past November- Shortly after, I developed myoclonus...(strong muscle contractions)--in my back, while lying down-I mean I thought I was having a seizure--left side, then right side! Went to ER---& of course the ER Drs. know "next to nothing"...about neuro issues!:wacko:
Finally...went to a terrific neurologist here in Philadelphia....(actually TWO--one the "chief neuro"(epilepsy specialist) & the other one....a "movement disorder" specialist- They examined me...gave me a 'complete workup'-
An EMG---TWO MRIs..(Brain and cervical spine)-blood test for thyroid-TWO EEGs...(one the 'regular one'-one 24 hrs)-(I Had this because I was getting "Brain zaps"-! Like a mild "electric shocks in my brain! Anyone ever get these?)- But...my tests.. --ALL..."normal"...(with exception of what neoro expected---some minor spinal arthritis--but everything..."normal"-:biggrin::biggrin: "official diagnosis"..."Benign positional myoclonus"! (In the same category as "BFS"..."Benign Fasiculation Syndrome")-- (I also get fasciculations and twitches)--
-In other words...the really "bothersome"...myoclonus....ONLY happens when I am lying down! not good for sleeping!:shrug:
Anyway-I was so 'relieved'...& happy---I thought I had some fatal neuro disease--(Like ALS...or myathenia Gravis)-:scared15:
-'benign'....('idiopathic' they say)--BUT- BOTH my neuros---said this would eventually go away---! (This was back in January)---
To sum things up----about 3 weeks ago--started having...3 or 4 days with NO symptoms...("progress, I thought)--!
I thought it was gone! (Like the neuros said)---But...it comes back....like a snake lying in wait!:ohmy:
Then....I'll have 2 or 3 'bad days'....--But--at least...I'm getting some good days! Only meds I take for this..is Valium! AND...strangely...to help me get really drowsy for sleep---I use "Antivert"...'Meclizine'...an antihistamine used for vertigo! a 25 mg tablet taken at 5:30 before dinner--has me "zonked"....by 10 PM...(When I take my Valium, which is every nite)-I should add...I ONLY take the "antivert',....when I feel I may have a problem getting to sleep--! Otherwise ..I take one or two...25mg Benadryl-
Before I finish---now...that I have been thourougly tested...& found normal...I STILL worry! I HATE when..I go to bed at nite..& the "Trunk"...myoclonus starts! (I can handle arms and legs)--Because...it shakes my neck,...head,..AND...THE WORST...MOST FRIGHTENING THING! (I saved this for last....see if anyone else has this as well as the regular myoclonus)---While lying on my back...& falling off to sleep...I awaken...GASPING FOR AIR!:scared15: What happens is the abdominal myoclonus starts....& the :whistles:muscle movements..in the abdomen...start always during the respiratory expiration! This....abdomen myoclonus...is like a 'punch to the stomach"...& louses up my respiration----temporarily....causing me...to gasp IN for air!
Thankfully--This does not happen too much---!
It has improved....(it 'spread' to arms & legs....thighs...biceps)---but have 'good days'...& 'bad days'---not happening all the time (some minor cramping)---
Anyway--what REALLY bothers me....is when the myoclonus is in my TRUNK..(back...chest....abdomen---neck....& sometimes into face! I do have "hemifacial spasm"...which is effectively treated with botox....every 6 months!)
BUT---this darn....myoclonus.....when it goes into my trunk...& abdomen..---& I get these "breathing issues"...! I just wanna sleep!
I am tired of this panic! (As is my poor wife, who has been so supportive and patient)-
I am glad to be here & hope to get good feedback from others! Often...knowing you are not alone with a condition...relieves the fear-!
For me, as I am sure for others here--just hearing from someone else-who has had or is now experiencing something similar is sooo...."reassuring":yesyes:
--And. ....I hope I can be of help & assurance to others!:bighug1:
I DO hope I hear from others...with a similar condition....(Myoclonus the Drs--have no clue as to why it's happening...BUt they tell me....it is nothing to worry about AND it will go away!:D)--
And---that "breathing" thing....where the myoclonus causes the abdomimal muscle to contract forcibly, taking my breath away-!--Man, that thing really bothers and upsets me!-! Anyone else get that?
Well--Sorry I went on so long....& was verbose! (I am a writer by profession-)--go out to California in winters--past winter when this first started..(had a "
bad night).AND..I came back from LA...to Philadelphia....3,000 miles....5 hr flight....THE VERY NEXT DAY! That's how .."panicked"...I was (BEFORE I saw my neurologists)--:scared15:
This is just the "latest" of my "worrisome"....health issues! I also have "Mitral Valve Prolapse"...& get occasional irregular heartbeats...And SVT....(I take Tenormin for that)---I finally have learned to "live"...with that--My Tenormin helps greatly with that-
-NOW..This "neuro issue"...hits me....& I have NO idea WHEN...it's going away? (Anyone think--like me--it's related to me having a bad case of the flu--right before?)
-Thank all of you for reading this! My heartfelt gratitude for your time--Hoping to hear---IF any of you would like to talk---e-mail me......& I can give you my phone #----I NEED to hear other people with similar stories! My e-mail is
Christianheimat@yahoo.com (http://www.nomorepanic.co.uk/mailto:Christianheimat@yahoo.com) Take care..& God bless--regards--Christian :)