MrMiyagi: 20+ years Effexor XR

[Altostrata]

Do you mean a withdrawal symptom from earlier Paxil reduction? If you think this is so, you might increase the amount of liquid slightly, for a small updose.

[MrMiyagi]

Im going to try a small increase to see if it helps the dysautonomia 

[MrMiyagi]

I am still here still disabled but I'm still here 💪 

[Altostrata]

Good to hear from you, @MrMiyagi How are you feeling?

[peaceandlove]

Hey are you still having gut motility issues?

[MrMiyagi]

On 11/4/2022 at 7:54 PM, Altostrata said:

Good to hear from you, @MrMiyagi How are you feeling?

I developed some typ if neuromuscular syndrome or dissease through it all and have been bed ridden with ALS typ issues. I have had multiple EMG studies that do t show anterior horn dissease but somthing extreamly similar to Matata44. I am currently still testing with professionals at mount Sinai and will let everyone know my prognosis in the future. For now I can only hope I developed and extreme case of Functinal neurologic disorder from what ever cause.  I belive more information on this can be found on Fndhope.org 

 

 

[margaretLO]

On 4/17/2023 at 11:14 PM, MrMiyagi said:

I developed some typ if neuromuscular syndrome or dissease through it all and have been bed ridden with ALS typ issues. I have had multiple EMG studies that do t show anterior horn dissease but somthing extreamly similar to Matata44. I am currently still testing with professionals at mount Sinai and will let everyone know my prognosis in the future. For now I can only hope I developed and extreme case of Functinal neurologic disorder from what ever cause.  I belive more information on this can be found on Fndhope.org 

 

 

Hi how are you? 

How long are you off? 

I saw your post for blood pooling and bedridden dysautonomia. I was there to a level that i couldn't go to bathroom. Xtreme blood pooling when standing, breath problem, couldn't lift my body upright to sit to a chair, blood pressure fluctuations..... I am not even close to normal but now except the fatigue I can go out, I can stand for minutes to do tasks and many times I don't feel so intense symptoms.... Still have all body weakness and I am like a old woman...I had raynauds too.. The cognitive decline is very delibating for me now.... 

[MrMiyagi]

2 hours ago, margaretLO said:

Hi how are you? 

How long are you off? 

I saw your post for blood pooling and bedridden dysautonomia. I was there to a level that i couldn't go to bathroom. Xtreme blood pooling when standing, breath problem, couldn't lift my body upright to sit to a chair, blood pressure fluctuations..... I am not even close to normal but now except the fatigue I can go out, I can stand for minutes to do tasks and many times I don't feel so intense symptoms.... Still have all body weakness and I am like a old woman...I had raynauds too.. The cognitive decline is very delibating for me now.... 

Unfortunately I have not been off of any medication long. When I originally had the brake from effexor I developed what neurologist belive to be a severe functional neurological disorder so its been off and on a few diffrent medications to try to stabilize my legs and emotions. I think in some individuals this would probably work itself out over the years but the severity of my condition literally shows muscle fasciculations and dystonia like episodes ongoing 3 years. I have been for the most part on Cymbalta 20mg Ativan 4mg oxcodone 10mg and tegretol for the remaining time but still 95% bed ridden with severe emotional instability and neuromuscular issues. If I could summarize everything in one word it would be Hell. I am still alive yes but ideation and depressed severely from my limitations. I want to say I don't know what the cause was it could have been multifactorial, undiagnosed lyme for a wile, long term effexor or just trauma, ptsd, genetics know one really knows. The new plan is to continue with pain management,neuropsychiatrist, and neurologist and start with Neuro physio, and cognitive therapy tailored to my issues. More can be found about this on. https://neurosymptoms.org/en/

[margaretLO]

2 minutes ago, MrMiyagi said:

Unfortunately I have not been off of any medication long. When I originally had the brake from effexor I developed what neurologist belive to be a severe functional neurological disorder so its been off and on a few diffrent medications to try to stabilize my legs and emotions. I think in some individuals this would probably work itself out over the years but the severity of my condition literally shows muscle fasciculations and dystonia like episodes ongoing 3 years. I have been for the most part on Cymbalta 20mg Ativan 4mg oxcodone 10mg and tegretol for the remaining time but still 95% bed ridden with severe emotional instability and neuromuscular issues. If I could summarize everything in one word it would be Hell. I am still alive yes but ideation and depressed severely from my limitations. I want to say I don't know what the cause was it could have been multifactorial, undiagnosed lyme for a wile, long term effexor or just trauma, ptsd, genetics know one really knows. The new plan is to continue with pain management,neuropsychiatrist, and neurologist and start with Neuro physio, and cognitive therapy tailored to my issues. More can be found about this on. https://neurosymptoms.org/en/

I am so sorry. Stay stron! I hope we ll find relief soon..... I am surviving too everyday at the moment

[MrMiyagi]

1 minute ago, margaretLO said:

I am so sorry. Stay stron! I hope we ll find relief soon..... I am surviving too everyday at the moment

Yes the goal now is survival everything else has taken a back seat. We will get better in time it just takes paitents and stability 🫂 . Feel free to message me anytime 

[Catina7]

I'm so sorry to hear about everything that you have endured.  You're right, it takes patience and stability.  I'm glad to see that you're hanging in there despite your health challenges.  Keep fighting every single day!  Sending you a big cyber hug!  ❤️