Need Tremendous Support Please

[[Pl...]]

I've noticed that everytime I get my cycle my symptoms worsen significantly....

 

I have developed a worsening new symptom where my jaw  will involuntarily open and contract up and down and my head will shake back and forth with severe abnormal facial movement.... and my whole body will contort / jerk.. My jaw will contract and spasm with such force my entire head will shake....I sometimes will even get vocal tics when this happens making long sounds with my voice......This is not constant but usually episodic

 

Is this anything that others could experience when tapering... Please see my signature and history

 

I don't know if this would be considered dystonia.... I am hopeless and in constant  despair

 

My anxiety and panic from this is overtaking me....it is pure unrelenting torture....

 

This will always usually hit me towards evening and or morning and I noticed that it seems to Be tied to adrenaline and my menstrual cycle in particular...

 

Went to er by ambulance... They have seen this before ....the attending physician as well as the paramedic who took me in.... They said it is usually always tied to benzo /drug withdrawal or side effects.... Nothing they could do but said I have to get off this drug...

 

I am terrified and scared and embarrassed to post this..... I need tremendous support yet again...

 

Can anyone let me know if you have experienced this have gotten or what the outcome was ......

 

I cry in hysterics everyday that I have developed  permanent neurological damage....

 

Please feel free to pm as well if you would like to keep private...

 

Bless you all

 

 

[[Ra...]]

When I tried my last cut, I was hysterical when I started my cycle. Yes, it's awful.

 

I can hear how awful this process is for you.

 

It is nice to hear that the paramedics and the doctor were validating of your experience.

 

for four years I have what I believe to be Myoclonic jerking. Whenever I try to relax my body or when I'm falling asleep, my body starts jerking like crazy. I never made the connection With the ativan until the last several months it started to creep into my mind, even though I mentioned it to my psych every time I had an appointment with him.

 

My gut says there's a connection. I even had a dream last night where some medical person was telling me I had a serious illness and I was steadfast that they were wrong, So I told them go ahead and do this test  they were talking about in the dream and low and behold I was right. In real life, Even though I feel the truth in my gut, I doubt my own experience when the doctors keep telling me it's not the drugs.

 

Given that you're in this circumstance, if it gives you any peace of mind, it very likely is the drugs.

 

I get caught up in fear thought as soon as I wake up in the morning. My mind goes to the worst places. And it's all I can do to find a way to pull my attention out of that because I know it makes it all worse. It soundsl like you might be doing that, too.

 

 

I hope you find lots of support as you go through this hard time. You deserve it and you need it.

 

Well wishes. 

[[Ch...]]

The fear of permanent damage is a common one, but you will heal.  I was on prescription benzodiazepines for the better part of 30+ years and I am completely well again.

 

Hormones tend to really rev up symptoms.  If you're aware of that it might help when your cycle hits.  Understanding why symptoms worsen at times might help a little, at least with the anxiety that comes with an uptick in symptoms.

 

[[ti...]]

Thats so scary. I believe I told Ranomi I thought the symptoms were seizures. I live with someone who has seizures of a different nature, so I guess thats why I went there.

Did the ER give u anything for it?

I just dont understand how we r supposed to know the difference between real medical emergencies or wd?

[[Pl...]]

Thank you Ranomi and Challis very much for kind words.... I don't believe ill heal.... I feel like a freak.... It actually just happened again for 3 seconds right now..... My head pulled back like someone was pulling my head back  and my jaw opened wide and contracted and I moaned involuntarily...

 

How can I keep going on like this? I cannot leave the house in any way at all due to all my physical and now my mental state is a complete wreck....

 

Tinwi.... all I know is the paramedic and the er doc said they've seen this before.....the er doc was  anti benzo and said he would never give these drugs out because he's seen firsthand what they can do....he said it was tied to w/d and side effects...the paramedic said when he saw it it was always tied to some type of med withdrawal issue...... I'm so certain this is permanent...

 

I had a test for seizures a year ago came back negative.... It looks like dystonia or something to me or that I have a mental defect with the severity of all this head facial stuff....

 

I literally feel destroyed..... I have no quality of life.....

 

I wish I knew someone else that had this and got better..... I don't think that exists....

[[Ja...]]

Have you heard of something called eps? I don't know exactly what it is but I talked w someone who had shakes and convulsions etc docs said it was conversion disorder which sounded crazy then another doc said it could be EPS but not sure what that is

I would do a coaching session with Baylissa Frederick

She has dystonia

She wrote recovery and renewal.

She is comforting and has talked to 8000 ppl in benzo withdrawal

She might know contacts or resources

She only charges 50 dollars for 45 min. Very dooable. She is an angel.

Sorry you are suffering so it's crazy and unfair

I would still check and fix methylation issues if u haven't already

It's crazy these meds. Feel better soon I can't wait to read your success story

I would also consider NAD IV since you are suffering so.

[[Ch...]]

I know of someone in one of the FB benzo support groups who posted a video of this.  She doesn't have it anymore if that's any reassurance. 

[[Pl...]]

Thank you both..... I'm crying hysterically right now.... Can barely type... I'm such a mess....

 

I'm planning on contacting Bliss... Did she ever recover from her dystonia?

 

Challis thank you for sharing that so much.....the panic and terror won't stop..... It's my whole face and body with the movements and the akasthesia....and 100 other issues.... I feel like I can't fight anymore.... I'm physically and mentally exhausted... Please body don't give out on me.....

 

I just want a normal life... why did this hit me so hard??!? why?

[[Ra...]]

Pleasebehere,

 

right now the fear is in charge. can you get some ice in a wash cloth and out in on your forehead? Or hold some ce cubes in your hands?

 

I went and looked at the symptom list of withdrawal on the recovery road website for you. Here

 

 

Muscle twitches/Jerks/Spasms: involuntary movements – myoclonic jerks, tics, twitches and spasms in different areas of body including extremities

 

 

I have Myoclonic jerks something awful. sometimes my whole body just convulses in waves of spasms and all the air is forced out of my lungs with each spasm. It's so terrifying. Please note this is a Symptom of withdrawal. I don't know what dose you're at. Or how long you've been in withdrawal.

 

do you have a supportive person with you.  if you don't, please reach out to a supportive person who can be there with you physically right now.

 

I pray to god you get some relief from this. 

 

I am so sorry this is happening to you.

 

Ranomi

 

:hug: :hug:

 

 

[[Ch...]]

4th of July, this year, I was where you are now at about 3 AM....even though I wasn't suicidal,  the crisis line was active even on a Holiday. I reached out to them and although I could tell none of them understood what I was going through specifically, my suffering was all too real.  Besides spending time with me they kept asking me, "What can YOU do right NOW to make this better?" It finally penetrated my brain fog and suffering that they were making me take back my power!!! At that very minute all I could commit to was changing my sheets and washing up....but it was a real plan and able to be accomplished! I wasn't cured into instant recovery, LOL, but I got through that very bad patch...you can too!!

 

[[Ja...]]

I think bliss johns or baylissa was born with dystonia

It was a real struggle for her and she said it took 3 years but she is totally ok now

I think she still has dystonia

Before this did you have anything like this? Twitching or anything

My doc said I needed a neural re-set and suggested Cbd oil

There is a pot doc out here (California) and I know Cbd oil is used for seizures and involuntary movements and patients w autism all the time

Other options:

Check yourself into mayo clinic get complete work up

Call baylissa see if she has referrals or info

NAD IV for reset. Since you are so ill now you can try it even when on the meds. If I were you I would do it bc you sound severe and doesn't seem like it can hurt only help.

Are you able to eat and sleep? Do you leave the house? It sounds like some sort of tic disorder with the movement and moaning like Tourette or something

Sometimes even a mouth guard specially for those w tics and Tourette's can help calm the brain down.

Pls let us know what you decide and call bliss!!!!

[[ti...]]

Sounds like the ER dr just dismissed u as a drug seeker. Been there, literally on the floor writhing in pain got sent home

Remained that way for days. Thought I was gonna die. I think my intestines were twisted.

But the Drs are trained not to give certain meds, even though I wasnt looking.

There job is to make sure you dont die immediately and send you to another Dr for follow up

I hope you have someone you can see who can help u more

[[Pl...]]

Thank you tinwi and Jackson...

 

No I never had this before.... None of it... No tics Tourette's moaning or anything.... I was completely healthy...

 

I can eat and sleep(with vivid nightmares) although at times I'm really nauseous.....

 

And yes I've been housebound for about 18 months....

 

Some of the sxs died down the past 2 days  with the movements although I am still sporadically getting them all over my face ... Eyes squeezing shut...jaw spasms...chest feels tight shallow breathing...there is like a vibrating humming in my chest making it hard to catch a breath.... Adrenaline surges as soon as i get up.. pulse at 150 ..but too weak to walk to burn off the energy..physical akasthesia.... Lots of nerve and muscle pain especially around eyes and forehead ( my weak spots) vibrating... Ughhhhhh

 

This all spikes up during my menstrual cycle like crazy.. It just ended...but I'm left with this.... what is it with these hormones  making this worse ... It's tied in somehow....

 

I also did some foot detoxes and was drinking chlorophyll and reflexology and putting kale in smoothies...and also did protein shakes and a probiotic  for about 5 days..... do you think this could have contributed too?... This whole vocal tics jaw opening just started right after I did this and with the period...

 

I remember before doing all this my sxs during my period seemed to be getting better especially my weak trembling legs improved...

 

Then I did all of the above and all hell broke loose.... Coincidence?.

 

A couple of people on here told me that may very well have been the case...I quit doing all of it....

 

I am like you Jackson a protracted kindling case.... is there any hope?

[[Pl...]]

Like clockwork; it is a week before my period and this happened to me all over again today..... A few episodes lasting under a minute.....

 

Head rolling back.... Moaning ... Shaking of head and body... Weakness.... Loss of use of limbs...big sign is my legs can't walk normally..... Can barely walk.....facial contorting grimacing... Huge huge adrenaline...

 

Has anyone else had this?  Its clearly related to hormones and. Menstruation..... Hypoglycemia too? Overactive under active thyroid I don't know?

 

I feel it when its going to come on.... I get very very spacey more anxiety than usual and like a surge of energy coming from my stomach....dizziness.. And also the facial contortions that happen in rapid succession ( that's a big sign)...and then boom.....

 

I am completely conscious and know what's happening... I just can't control it and speak back. To anyone until it subsides....

 

Had this during ativan withdrawal which was pretty severe too but this is worse in a lot of ways... .

 

Not seeking a diagnosis just if someone experienced something similar and what became of it....

 

I seriously want to just cold turkey this evil kolonopin .... But scared I will make things worse if that's even possible....

 

I can't calm down yet again....I am sooooooo sick of this and the terror never stops...

[[ti...]]

If its tied into your periods can you go on continous birth control? Until the end of your taper. You can take bcps non stop for months and never get a period. Just a thought

[[Pl...]]

If its tied into your periods can you go on continous birth control? Until the end of your taper. You can take bcps non stop for months and never get a period. Just a thought

 

I'm hyper sensitive to meds entire life do not do well even with OTC stuff but basically whatever impacts the cns.....and hesitate what that would do to me... Who knows it could even make me worse....

 

I'm willing to occasionally use a beta blocker and have used the tiniest dose possible of colonodine a few times just to give me some relief...

 

I was going to try propornol next week just to see if that would help me better with tremors in my legs and arms but again very sporadically....

[[ti...]]

Ok good luck with that. Whatever you try I hope it works

[[Pl...]]

Thank you for your kind remarks and concern tinwi...

[[Ja...]]

Have you tried gabapentin?

I am considering it as it would be better than benzo if I don't stabilize on this dose

/e will see

Good luck

Your suffering is too much

I wish you could get some peace soon

 

[[Pl...]]

Have you tried gabapentin?

I am considering it as it would be better than benzo if I don't stabilize on this dose

/e will see

Good luck

Your suffering is too much

I wish you could get some peace soon

 

Thank you... I don't think I will make it .... My body is going to give out..... I feel the way you do exactly.... I feel I am the worst person on here ; not to minimize anyone by any means... although there must be others that are maybe  just not posting....I really hope that's the case but I don't want to see anyone suffer  :'(

 

gabapentin has worked for many..... It did not work for me.... I tried it once....I feel if under duress trying anything within reason and sporadically if possible is always an option...

[[Pl...]]

Jackson.... I will try to stop posting more on the lesser side ..... I distress people too much.....

[[ti...]]

What? We are all adults here. If hearing distressing stuff is getting to me I simply dont read whatever may be distressing me

Dont worry about that at least with me

[[Ja...]]

Ohh I am sorry you misread my post

I meant you are going through too much!!

Pls don't apologize for your posts

I have been posting frantically all week

I was just saying that I feel your pain and wish it would go away

That's what I meant:( sorry

[[...]]

I have a symptom similar to what you are talking about. It happens upon waking in the morning....I wake with extreme anxiety...my neck feels clenched and I get this weird tingling sensation that ends with the left side of my face and tongue being numb and tingling (like when your foot falls asleep)...I have a strange ringing in my ears....and then it feels like my tongue is swelling huge and the side of my face is splitting open...I usually pass out at this point and awaken a few minutes later. My husband witnessed it once, and he said that after I lost consciousness, I was making weird noises, spitting, biting my tongue, and my body was completely rigid. It has happened 4 or 5 times in the last 3 years....I know it happened to me in January 2016 and then again a week ago (although the one last week I was able to pull myself out of it before I passed out. I did bite my tongue pretty bad though). Two of the episodes happened before I ever took a benzo, but I was taking Ambien for sleep at those times. The one in January and the one last week both happened in the midst of my Ativan taper (I do take Ambien as well ).

 

[[Bl...]]

You are not alone! It will get better.

<3

There are so many wonderful people here who have been through so much!