support for those w/ head pressure

[[dr...]]

I felt some kind of shift today... I have never in the 7 mos. had the head s/x disappear....but this morning I felt an improvement in my baseline.....I just feel more of me came back.....hard to explain but most of you know what I mean.....that is a positive and always encouraging....m

 

Oh, so very happy to hear this, Minnie!  You've certainly waited a long time!  I can only imagine how wonderful it must feel, and praying this is the end for you ... kick that beast to the curb!

 

Still some ear pressure and bubbling and a little boatiness with eye and head motion,  but nothing like the beginning of this wave from hell.

 

Hey Coop, I have the awful boatiness too.  By "head motion" do you mean your head actually visibly moves, like pulsates or tremors or feeling like your muscles are constantly contracting and releasing?  I have this and it's driving me quite insane.

 

Can anyone else relate?

 

yes..I am now getting the pulsating stuff too.  I am also getting a lot of boatiness.  Until I see some of these things described I can't describe them.  Every step I take can be an adventure.  I was walking I was so unsteady.  I kept saying "it's the healing going on in my brain".

[[dr...]]

When i went to the dr. because I thought it was a sinus infection a few months ago they said I had a lot of liquid in ears and nasal passages were very swollen.  They gave me flonase.  Big mistake as that steroid sent me anxiety through the roof.  when I wnet for a follow up visit the ears were clear but my nose passages and sinuses still swollen.  They feel the same as several months ago.  It's all withdrawal. 

[[Lo...]]

 

yes..I am now getting the pulsating stuff too.  I am also getting a lot of boatiness.  Until I see some of these things described I can't describe them.  Every step I take can be an adventure.  I was walking I was so unsteady.  I kept saying "it's the healing going on in my brain".

 

I keep telling myself that too Drew...that and the fact that it is all temporary. Even my physical therapist said, "You have great balance physically but the imbalance is in your inner ear (basically my head)."

 

It will all pass but in the meantime it sucks. 

[[Lo...]]

When i went to the dr. because I thought it was a sinus infection a few months ago they said I had a lot of liquid in ears and nasal passages were very swollen.  They gave me flonase.  Big mistake as that steroid sent me anxiety through the roof.  when I wnet for a follow up visit the ears were clear but my nose passages and sinuses still swollen.  They feel the same as several months ago.  It's all withdrawal.

 

Same here...my right sinus passage is inflamed...only one side. They gave me flonase but ummmm....no thanks. I got some Saline drops instead.

[[Co...]]

Abcd...sorry,  I wasn't very clear...by " head motion " I meant turning my head causes some boatiness.  I also have the fatigue with standing. ..I am a little concerned that everyone had this in the earlier months of p/w...but mine showed up in month 10.  But Greenice,  who is where I am timeline wise also got it just a few weeks ago. .. Abcd,  this will eventually let up. ...Rest when you need to and go easy. This s/x is fatiguing and stressful..

.....hope this lifts for you very soon....coop

[[mi...]]

Hi coop....thank you.... I am so glad you are seeing some relief, even a little is so welcome..... mine came back full force this afternoon but at least it was really mild for about 8 hrs.....it is so discouraging this up and down, when it lets up I should know better than to get my hopes up that it is leaving, this is truly a wicked process....now I know the true meaning of the dangling carrot!!......well coop I know we will all get there, when is the big ?......Take care, I hope your head s/x stay quiet for you......m

 

Hi LM....thank you.....so sorry that you have that boatinessI have not had that, it does suck so bad....I hope it lets up soon it must be so hard to work with that s/x.....if my wishes would come true....we would all be healed.....Take care LM....m

 

Hi Drew.....Sorry you are suffering all of these s/x, it is just beyond me how this can all happen. My husband told me I have been snoring some nights, I am also stuffed up and it is not a cold or allergies, I sure hope nothing new pops up or I will seriously consider checking myself in somewhere lol! I get alot of moving sensations in my head, and lots of noise it DRIVES ME CRAZY.....I hope this all lifts for you soon....m

 

abcd.... thank you, and so glad you came back.....so sorry you feel so bad.....this head stuff drives me batty to.....I try to stay positive but tonight I just cried.....I just have to let out the frustration someway.....I had a little reprieve this am then it whacked me this afternoon....I guess I let myself think it was going to let up.....knowing it will go away is great, it is just the not knowing how long we must endure this that gets the best of me....I so hope you get relief soon, real soon, be well a........m

 

 

 

 

[[...]]

 

yes..I am now getting the pulsating stuff too.  I am also getting a lot of boatiness.  Until I see some of these things described I can't describe them.  Every step I take can be an adventure.  I was walking I was so unsteady.  I kept saying "it's the healing going on in my brain".

 

I keep telling myself that too Drew...that and the fact that it is all temporary. Even my physical therapist said, "You have great balance physically but the imbalance is in your inner ear (basically my head)."

 

It will all pass but in the meantime it sucks. 

 

Aaargh, "sucks' is an understatement, LM!  Hmmmph!  I'm just so happy for you that you're able to pull off the work thing.  I really think if I was able to work, I'd be able to progress so much faster.

 

I know, Drew, it's so very hard to articulate in words as it's likely something that most people will never (fortunately) experience in a lifetime!  I'm constantly giving myself positive self talk ... sometimes I believe myself and sometimes I don't ... but hey! 

 

Abcd...sorry,  I wasn't very clear...by " head motion " I meant turning my head causes some boatiness.  I also have the fatigue with standing. ..I am a little concerned that everyone had this in the earlier months of p/w...but mine showed up in month 10.  But Greenice,  who is where I am timeline wise also got it just a few weeks ago. .. Abcd,  this will eventually let up. ...Rest when you need to and go easy. This s/x is fatiguing and stressful..

.....hope this lifts for you very soon....coop

 

Ah, gotcha, Coop, I did misunderstand.  I guess there's no timeline for any of this cr*p, I've been dealing with it forever, and putting it down to tolerance w/d.  But, honestly, I'm not totally convinced it's w/d at all ... and I know so many people have these doubts from time to time ... but my situation is a little different in that I was taking the Clonaz very erratically and intermittently and can't even remember whether or how often I'd been taking it when this s/x began.  Hang in there and take care! 

 

Hi coop....thank you.... I am so glad you are seeing some relief, even a little is so welcome..... mine came back full force this afternoon but at least it was really mild for about 8 hrs.....it is so discouraging this up and down, when it lets up I should know better than to get my hopes up that it is leaving, this is truly a wicked process....now I know the true meaning of the dangling carrot!!......well coop I know we will all get there, when is the big ?......Take care, I hope your head s/x stay quiet for you......m

 

Hi LM....thank you.....so sorry that you have that boatinessI have not had that, it does suck so bad....I hope it lets up soon it must be so hard to work with that s/x.....if my wishes would come true....we would all be healed.....Take care LM....m

 

Hi Drew.....Sorry you are suffering all of these s/x, it is just beyond me how this can all happen. My husband told me I have been snoring some nights, I am also stuffed up and it is not a cold or allergies, I sure hope nothing new pops up or I will seriously consider checking myself in somewhere lol! I get alot of moving sensations in my head, and lots of noise it DRIVES ME CRAZY.....I hope this all lifts for you soon....m

 

abcd.... thank you, and so glad you came back.....so sorry you feel so bad.....this head stuff drives me batty to.....I try to stay positive but tonight I just cried.....I just have to let out the frustration someway.....I had a little reprieve this am then it whacked me this afternoon....I guess I let myself think it was going to let up.....knowing it will go away is great, it is just the not knowing how long we must endure this that gets the best of me....I so hope you get relief soon, real soon, be well a........m

 

 

 

 

 

Oh no, Minnie!  So sorry to hear you got hit again.  But, hey, how reassuring it must feel to know you're definitely well on the path to healing, just feeling that "shift" and symptom relief.  Please hang in there!  Yes, I cry a lot too.  My first instinct is to stop myself from being a baby and wallowing in my own misery, but then I give myself permission and acknowledge that it's healthy to have a release.  I moan a lot too, I'm always moaning, I walk my dog and I'm moaning, I run in and out of the supermarket and I'm moaning, and I try to remember to hum instead when there's people around so I don't come across as too crazy!  Hah!  In fact, that's how I know if I'm having an easier day (or hour or minute for that matter), I'll realize that I'm not moaning in the shower for instance.

 

Wishing all of us some relief, oh how wonderful it would ... WILL .... be when we're all here writing about this in the past tense!   

[[Lo...]]

Hi coop....thank you.... I am so glad you are seeing some relief, even a little is so welcome..... mine came back full force this afternoon but at least it was really mild for about 8 hrs.....it is so discouraging this up and down, when it lets up I should know better than to get my hopes up that it is leaving, this is truly a wicked process....now I know the true meaning of the dangling carrot!!......well coop I know we will all get there, when is the big ?......Take care, I hope your head s/x stay quiet for you......m

 

Hi LM....thank you.....so sorry that you have that boatinessI have not had that, it does suck so bad....I hope it lets up soon it must be so hard to work with that s/x.....if my wishes would come true....we would all be healed.....Take care LM....m

 

Hi Drew.....Sorry you are suffering all of these s/x, it is just beyond me how this can all happen. My husband told me I have been snoring some nights, I am also stuffed up and it is not a cold or allergies, I sure hope nothing new pops up or I will seriously consider checking myself in somewhere lol! I get alot of moving sensations in my head, and lots of noise it DRIVES ME CRAZY.....I hope this all lifts for you soon....m

 

abcd.... thank you, and so glad you came back.....so sorry you feel so bad.....this head stuff drives me batty to.....I try to stay positive but tonight I just cried.....I just have to let out the frustration someway.....I had a little reprieve this am then it whacked me this afternoon....I guess I let myself think it was going to let up.....knowing it will go away is great, it is just the not knowing how long we must endure this that gets the best of me....I so hope you get relief soon, real soon, be well a........m

 

 

Thanks honey :-) needed that today.

[[Lo...]]

It is hard to work with the boatiness and always feeling like I am moving...moreso after a dtive. But this has to be temporary! It really does...praying that one day all the head stuff vanishes for all of us. We have lives to live and things to do! 

[[dr...]]

Last night my head pressure stopped for a few hours.  Sinuses felt normal.  This morning they are back but even getting a reprieve  for a few hours was great.  My symptoms are here but feeling a bit less.  I really reall really hope this part of the wave is starting to break. 

 

Hope everyone gets a small window soon.

[[Lo...]]

Last night my head pressure stopped for a few hours.  Sinuses felt normal.  This morning they are back but even getting a reprieve  for a few hours was great.  My symptoms are here but feeling a bit less.  I really reall really hope this part of the wave is starting to break. 

 

Hope everyone gets a small window soon.

 

Thank God for a break!

 

Also...Happy 4.5 months my friend! Praying the last half of month 4 and beyond is pure healing (and linear at that in the positive direction)! 

[[mi...]]

Yay LM....over 4 mos, every day off is closer to the end....we will get there.....we will, we will, we will....100 x on the blackboard and it will be so......hmmm.....sounds good anyway.....hope you are doing okay this evening......m

[[mi...]]

YAY Drew a small window.....it is a start to more of the same......hope another one comes soon......m

[[dr...]]

Thx Minnie...it's all relative. I still had all the other lovely stuff.  Small victories we will take

 

Same to you LM my same day jump buddie.

[Guest [Ma...]]

Wanted to introduce myself and join this club. I too am experiencing right face, eye, right nostril, jaw and forehead pressure and extreme pain. Horrible. So sorry we all have to suffer through this with little recognition and understanding from the medical community. Mine was at its worse when rapidly crossed over from .25 K to phenobarb - madness. It's subsided some now on X, with sone windows lasting a few days. Worried though, that the lower I go on the taper will increase the horrid pain & pressure.

Take care friends.

[[...]]

Hi Marija, welcome to the club no one wants to be a member of! 

 

So sorry you're in so much pain, and horrified to read your sig.  OMG, don't get me started on doctors now ...!!!  But you're on the right track now, and that's all that matters.

 

I was in tolerance w/d for a long time before I realized it.  If anything, my head pressure gradually decreased as I lowered my dose, so the fact that you say you're already noticing a difference is a very good sign.  I still have it and some days are worse than others, but my overall baseline is far better than during tolerance.  I remember barely being able to shower or even being able to concentrate on basic functioning like dressing myself when it was at its worst. 

 

What type of pain do you have?  Is it more muscular or neuropathic?

[[Lo...]]

Yay LM....over 4 mos, every day off is closer to the end....we will get there.....we will, we will, we will....100 x on the blackboard and it will be so......hmmm.....sounds good anyway.....hope you are doing okay this evening......m

 

Thanks Minnie! The head pressure this week has been a bit much. Praying it lets up soon!

 

Yes 4.5 months off...we have keep running until we cross the finish line!

[[mi...]]

Hi Marija.....oh I am so sorry you are in this mess.....I also went thru rapid detox w/ phenobarb.....the 2nd day home I went to the er thought I was having a stroke my right side felt numb....they said I was fine....I was not fine I was in a living nightmare...coming off of benzos and opiates was horrific......I completely understand the pain you are feeling......I know it will pass given time but living in the middle is so hard.....keep posting as much as you need to we here so understand the head stuff so well...to well.....take care my friend we are here for you....m

[[mi...]]

Hi LM.....sorry you have had it bad this week ....I have to......almost like acute....my stomach has also went crazy have not had that as bad since acute either....the cycling is so difficult.....

 

I am trying to approach this in a slightly different way...I realized I am fighting it constantly.....sad every day lately that it is worse...really getting myself worked up...it is such a struggle not to...so I know that if I do not find a way to accept it right now just as it is....I am going to feel worse......I do not know how successful I will be...I just know for my sanity I must try really hard to somehow work on acceptance......God grant me the serenity prayer is pretty powerful......so repeating that and accepting that this will go away when it goes away it is completely out of my control.....I have no control over the timeline WHAT!!!!.....

 

Anyway I will try to get better and better at it.....I thought what if something happened to me that was permanent not benzos some disorder or disease.....I would have to learn to accept that somehow......anyway just my thoughts......I sure hope you get some relief soon and I think about you having to work daily thru this geezzzz this is so tiring......take care my friend......m

[[Lo...]]

Hi LM.....sorry you have had it bad this week ....I have to......almost like acute....my stomach has also went crazy have not had that as bad since acute either....the cycling is so difficult.....

 

I am trying to approach this in a slightly different way...I realized I am fighting it constantly.....sad every day lately that it is worse...really getting myself worked up...it is such a struggle not to...so I know that if I do not find a way to accept it right now just as it is....I am going to feel worse......I do not know how successful I will be...I just know for my sanity I must try really hard to somehow work on acceptance......God grant me the serenity prayer is pretty powerful......so repeating that and accepting that this will go away when it goes away it is completely out of my control.....I have no control over the timeline WHAT!!!!.....

 

Anyway I will try to get better and better at it.....I thought what if something happened to me that was permanent not benzos some disorder or disease.....I would have to learn to accept that somehow......anyway just my thoughts......I sure hope you get some relief soon and I think about you having to work daily thru this geezzzz this is so tiring......take care my friend......m

 

Thanks minnie...yep I'm on the working group too..there are a lot of us that are working and going through W/D! Sad indeed...work is distracting. I have my moments though...just praying this all fades soon. 

 

Thanks for being so positive!

[Guest [Ma...]]

Thank you for the warm welcome to this dreadful club!  I'm so grateful to hear your thoughts abcd & Minnie. As you know, this is such a lonely journey ........

 

My symptoms seem to change weekly but the "head stuff", extreme exhaustion, cog fog, dizziness, tinnitus & interdose WD with the night time dose are constant. 

Boy do I understand the "not able to shower"!  After the rapid cross, I was in bed for 3 months!  Horrible!! This journey is so unique. A friend of mine just shared with me that she just stopped taking her 1mg daily X (several year usage)  with only a 3 day headache to report😳

Oh well, onwards I go..... I dose 6 times a day and am at 1.58 mg now. Just made a cut yesterday so feeling a mess.

Take care

 

[[mi...]]

You are welcome......it is terrible any of us are suffering.....but at least we have each others company.....not feeling completely alone in this is so important.....if I felt I was the only one having these s/x....well my poor husband!!!

 

It is amazing about your friend 3 days.....lucky girl.....

 

Take care Marija......m

[[...]]

Marija, I C/T'd .25mg Clonaz about 4 times in the past ... didn't know any better, would take it typically Mon-Fri with w/ends off, for anywhere from one to three years, then CT, then reinstate again a year or two or three later and do the same thing again.  I didn't even have a headache when I stopped!  Nothing!  Nada!  Zippo!

 

I only became aware of what w/d mean after the awful AD experience, after which I was so anti-med and too terrified to even take a Tylenol.  For years!  Unfortunately, I became so desperate for muscular pain relief, I falsely assured myself that Clonaz was a tried/trusted choice.  Pffffftttt!      Hang in there and continue to dig deep, we're all in it together.

 

Minnie and LM, sorry to hear it's been bad again this week.  Last night I had a sudden lift of this ever present symptom!  It must've lasted a couple of hours and OMG, was it fantastic!  I was walking my dog and taking in and appreciating every wonderful second of it.  I was able to actually turn my head and look all around me, instead of having the blinders on and just focusing on getting through the walk.  I walked with a neighbor and was constantly aware of how clear my head was and the head tremor was non-existent too!  Oh, it was just soooo wonderful!  I truly cannot remember the last time I had that fleeting break.  Man, it felt ever sooooo good!  Gave me that teensy weensy little bit of hope that I just needed to move forward.

 

Minnie, you're spot on.  I definitely notice how much worse it feels when I start fighting it ... and it's so hard not to!  I constantly have to pull myself up again and tell myself to just float with it.  If I have to lie down every 1/2 hour, so be it.  I find something interesting to listen to on Youtube, practise the tips from my pain meditation course at the same time and it's no picnic, but golly, it beats fighting it and the woe is me!

 

Please feel better, friends.  Wishing everyone a long taste of my couple of hours last night!  Jeez, did I say how good it felt!   

[[mi...]]

abcdefg......I just could not resist that.....love your name and so easy to remember.......

 

Oh my gosh I am so happy for you that you got those few minutes of normal......it becomes so hard to remember at times.....I am sorry you have the muscle pain on top of w/d.....is it something that will go away? amazing that you c/t so many times and felt nothing....isnt this mind boggling.....just no rhyme or reason to any of this grrrrr......

 

That is so important to be able to lay down when we need to and just be okay with what we need to do to get thru this.....I also constantly feel guilty that my garden and house need my attention and I just cannot always keep up....I always loved gardening.....housework not so much.....but I have always been a little to neat......so now I have just had to let some of that go .....maybe it is not such a bad thing as the house being messy made it hard for me to relax...now I have no choice.....

 

I have 3 dogs and a semi messy husband so it is a challenge to just say WHATEVER I will take care of it tomorrow....I am working on that acceptance thing.....it is the only way to have some peace.......I need acceptance but find it hard to give to myself...what is up with that??? I will think about that issue in between brain squeezes lol.....

 

Take care a, I hope you get tons of those clear minutes......m

[[Lo...]]

Marija, I C/T'd .25mg Clonaz about 4 times in the past ... didn't know any better, would take it typically Mon-Fri with w/ends off, for anywhere from one to three years, then CT, then reinstate again a year or two or three later and do the same thing again.  I didn't even have a headache when I stopped!  Nothing!  Nada!  Zippo!

 

I only became aware of what w/d mean after the awful AD experience, after which I was so anti-med and too terrified to even take a Tylenol.  For years!  Unfortunately, I became so desperate for muscular pain relief, I falsely assured myself that Clonaz was a tried/trusted choice.  Pffffftttt!      Hang in there and continue to dig deep, we're all in it together.

 

Minnie and LM, sorry to hear it's been bad again this week.  Last night I had a sudden lift of this ever present symptom!  It must've lasted a couple of hours and OMG, was it fantastic!  I was walking my dog and taking in and appreciating every wonderful second of it.  I was able to actually turn my head and look all around me, instead of having the blinders on and just focusing on getting through the walk.  I walked with a neighbor and was constantly aware of how clear my head was and the head tremor was non-existent too!  Oh, it was just soooo wonderful!  I truly cannot remember the last time I had that fleeting break.  Man, it felt ever sooooo good!  Gave me that teensy weensy little bit of hope that I just needed to move forward.

 

Minnie, you're spot on.  I definitely notice how much worse it feels when I start fighting it ... and it's so hard not to!  I constantly have to pull myself up again and tell myself to just float with it.  If I have to lie down every 1/2 hour, so be it.  I find something interesting to listen to on Youtube, practise the tips from my pain meditation course at the same time and it's no picnic, but golly, it beats fighting it and the woe is me!

 

Please feel better, friends.  Wishing everyone a long taste of my couple of hours last night!  Jeez, did I say how good it felt!   

 

So glad you had a break!!! Tonight between the head pressure, poor balance and rocky boat sensation...is a bit much!

 

Praying for a window this weekend.