support for those w/ head pressure

[[mi...]]

Hi coop......I am so glad you came here. I read the thread you started from beginning to end, I have been  cheering all of you on, I saw alot of steps forward and a few back but definite progress, then I saw you were hit with this dreadful head issue. I am so sorry you have this. I know you were hoping for the 6 mos. then readjusted to a little longer, now this, it is so unfair. I know life is not always fair, but this could have been avoided, if drs. would know the ramifications of what they prescribe, well, they do not, so that is what is unfair.

 

I want to say first that you have given encouragement to so many, and you are brave just to keep going. You are strong, look how you readjusted your expectations of the time frame, you did not go down, instead you picked yourself up and made a new plan, that is strong! You always mention how you are a ( wimpy girl ) that stuck with me, I know I am strong but I feel wimpy alot lately, but like you when I see my emotions going down to far, I must do something to readjust my thoughts, it is so tiring.

 

So if you want to share w/ me tell me what you are fearing right now, that may help some, all of us here need reassurance and kind words. Bless you coop. I am here and my head s/x are to, Yay!!.....m

 

I understand the fear with this, we know it will end, but, in the meantime is my problem. I find with this head pressure and strange sensations it is impossible to feel calm or relaxed. I still do many things, but I am never fully present, with my head so active it is impossible for me. I also have the thought that something is damaged, logically I know better, I just do not always feel logical, oh what a mess this is!!

[[Co...]]

Hi Minnie...this is such a helpful thread. I really struggle with this one...I tend to flip right into health fear with the head pressure. Mine usually starts I the morning,  I wake up with the buzzing in my head,  ears that feel plugged and internal head pressure sometimes with a headache. It feels like my brain is swelling and inflammed...freaks me out.  Today I had a near panic with it ( I haven't had a panic in months). I get spacey and cant function mentally ( from anxiety I think).. It is just such an awful feeling. My panic passed and so did the head pressure but now I am developing a fear of it...anticipating ...I haven't had anticipatory fear of a s/x for months either.  Your thread is really helping me. Has anyone developed this in the later months of w/d? Mine started at month 6 ..I had none in taper or before month 6. I am also wondering if buddies are still getting it in the later months of w/d...months 8-12?...

.....The only thing that helps me even a little is hot packs to the back of my neck ...and sometimes a lavender epsome salts hot bath soak. Going outside sometimes helps. Moving ...trying to stay busy..they all help a little. Mine seems to be worse lying down....I really thought this was gone after about 4-5 weeks but it came back. I would love to hear from anyone who has had it clear up ..for good

....thanks so much for any answers....Does anyone else get crazy anxiety with it....I was doing really good with my anxiety until the head pressure cropped up....So sorry for the somewhat hysterical and negative post....coop

[[je...]]

Hi Coop! I had the head pressure when I was early off and then it left, but now in month 10 I have it again and it has not let up!! Right now it is my worst sx  and everything you described is exactly how my head feels too. Can't wait for this one to go away!! Jenny 

[[mi...]]

Hi coop....I have everything you describe...mine is different only in the fact that it has not let up for 6 mos.. Jenny says hers  started at 11 mos.. It seems the only thing predictable is that it is unpredictable. It used to terrify me so I really understand your fears. The thing I feel you can take some comfort in, is that everyone that has it has the same variation of s/x. Julia, I think she is an administrator left a response on another thread explaining her head s/x ( they were worse than mine ) she says she has completely healed from them. Maybe you could pm her and get some relief of the fear. The fear, that is a tough one, please never feel ashamed by that, it is so natural to fear this. If we did not have fears about it then I think it would be safe to say we have true brain damage. I remember the heart racing, I was sure I was dieing, I went to the er 3x in my first 4 wks. so see you are not alone in the extreme fear club.... I hope someone responds here to some of your questions that I do not know the answers to, yet......If I see something that I think will help you I will let you know....m

[[Co...]]

Minnie....you are so caring. Thank you so much for taking the time to post that very reassuring post. I just can not imagine having head pressure for 6 months. You are Wonder Woman...I will look through Julia 's posts. I went to er twice with palps..( month 4 and month 6). I also thought I was dying...

......thank you again Minnie.....wishing you a peaceful night...coop

[[...]]

abcd.......Hello nice to meet you..do not know you well and already you are bringing comphy cushions for our weary heads...my kind of person....I will bring gentle head massagers and warm apple pie w/ vanilla ice cream!! See you there!!........m

 

Oh thanks so much, Minnie, yummy. I just went for seconds if that's okay with you. Oh, and here's a bunch of ice packs for everyone too.  Anything else we need?

 

By way of a proper introduction, I'm copy/pasting my sx from the other thread ... 

 

Pulsating/throbbing/pulling/twisting/squeezing.  Head/face/neck/shoulders.  Muscles are constantly contracted, feels like they're actually pulling my skull out of place! 

24/7 from the moment I wake up!!!  Makes me feel like I'm constantly bobbing up and down on a boat.  Ughhh!

Oh, and my head actually visibly shakes in time with my heart beat ... very subtle to see, but boy do I feel it!

 

I've also had the myofascial diagnosis, but to me it's just another basket case diagnosis to get us out of the Doctor's office. 

 

This sx is 24/7 from the moment my brain awakes in the morning! The only time it dissipates is those few seconds just as I'm about to doze off.

 

Can anyone relate to this at all?  Anyone with the tight muscles too?

 

Also, if anyone finds that post by Juliea that you mentioned, it would be very helpful if you could share the link here.  Please and thank you.

 

Wishing everyone a good night and good healing! 

[[Si...]]

Sinnerman.....welcome! Excellent description!! What you describe is not nutty at all, well it is nutty that a drug can do this to all of us. I am so glad your headaches are gone, they were the reason I reinstated. I think that was a mistake, but the headaches were horrible! You sound like you have been hit really hard w/ so many things happening in your head. I am so sorry, my heart goes out to you...it is challenging on a minute by minute basis at times. I have quit trying to make sense of all of the activity I guess it is what it is until it isnt. I have to believe this will let up for all of us. I hope you come back and we will all see each other to the healing side. m

 

Thank you for your kind words, Minnie. I guess my head symptom list sounds worse than it is. Although I have them almost 24/7, many days they're barely noticeable. My headaches are not gone yet, only the migraines. My whole psychiatric career started with chronic tension headaches almost 11 years ago. They disappeared for the better part of the 11 years only to come back in benzo w/d. Today I'm bedridden with headache, pressure, muscle tightness and nausea, listening to my tinnitus I hope it will ease up soon.

[[Lo...]]

hi everyone I can use some support today. had a pretty nice window yesterday. all through the night so I've been struggling with a migraine like headache and I also had a terrible nightmare.

 

I don't get headaches and this is really wearing me out.

 

I don't even have any tylenol in the house because I don't get headaches. how do I go from such a nice day to such a crappy one.  :'(

[[mi...]]

Hi coop....you are so welcome...the post from julia was on a question I posted on the post taper thread about head pressure, about 4 days ago, I think.....

 

I have felt many times, I just cannot do this anymore , I just wish I had a choice. Some days I have just caved in and stayed in bed crying, other days ( which are more often )  thankfully, I just do as much as I can. We have all missed alot, to much. I am 61 and I just feel I cannot miss alot more.

 

So happy you still went to see your grandson fly, what a thrill! My son has his pilots license for helicopters, sometimes it used to scare me alot, he is the baby and I have had to struggle to let him grow up in my mind. When he first started his schooling years ago, he called me and said," I do not think I can learn to hover!" I told him you absolutely will, and I truly had no doubt he would. He did!........... All of us need that certainty that we will heal, and we will...It is more about of the daily struggle for me....

 

I am so sorry you had such a horrible day yesterday... I read it on your 6-12 mo. thread, you were really hit hard, really hard. I pray you are better today. Some days I think this cannot get worse and then it does!! It is so relentless....

 

I hope your days get easier coop......m

[[mi...]]

abcd.....I like that it is so easy!........welcome back, I will take those Ice packs, my head feels sometimes like it gets real hot, weird.....lets see.... what else to bring, how about a dr. that knows about this stuff, or better yet, one who went thru this!! I have a bunch of feather pillows, I love those to bury my head in!!

 

Word for word,I have all of those feelings in my head that you have, it is so creepy!! So since we all have the same or similar s/x that means FOR SURE it is w/d. I am so sorry you have all of this abcd. Are you able to do much? This is so hard on a daily basis to deal with....

 

I so hope you keep coming back. I love your generous gifts....I hope we keep sharing on here and we all see 100% healing together. This will also help the ones coming behind us. I wish this would be the end of this sad story, but we know it will continue, so sad.

[[mi...]]

Hi loving mother......I am so happy you had a window....I hate that they can close when it is still so sunny and warm out. It feels so cruel when we feel this is it, I am done, I am better woo hoo!!......them wham, oh so depressing, such a huge let down... how do we keep do this time after time......must be that mustard seed of hope, that we have inside, that will just not give up, what a great bunch of people we are.....we love life and we know the beauty it holds for all of us.....we just keep going till we get back to our lives the way we know they can and WILL be again.

 

I am with you, we all are, hugs to you.......m

[[mi...]]

Hi sinnerman......so sorry you are not feeling well...I am so glad that you have relief some days....the headaches are so awful I can handle the other things in my head better than the headaches they are the reason I tried reinstating, it did not work. They have lessened slowly for me. I rarely get them now..so glad for that small miracle!!....even though you have alot of good days I know the bad are still hard. Soon you will have all good days....

 

It is crazy how we have something happen to us, go to a dr., get put on meds, and we suffer more than we did with the orginal s/x...this has been a long road for you, for sure, you do sound like you are almost healed though....do you feel that way?...........I hope so s....m

[[Lo...]]

Hi Minnie! it is pretty depressing especially when you get slammed with a new symptoms like a migraine like headache. my friend is taking a bus to get to me so I can get some Tylenol :-) I just feel like life is passing me by but that's when I get a window I enjoy it as much as I can.

 

seeing my son's face light up when we got to the playground brought such joy to me yesterday.

 

it truly is a mustard seed of hope that keeps me going and my faith.

 

let's keep each other encouraged and one day we will all have permanent windows :-)

 

 

[[mi...]]

Lovingm...... I just read your post......little person looking at you with such love, isnt that the most wonderful feeling.... not even benzos can ruin that....you keep playing at that playground with that precious child, and one day you will look back when you are healed, and realize that even though you felt bad, you pulled that mommy strength up, and created some beautiful memories that will remain. Bless you lovingm... I hope you have a beautiful day....m

[[Na...]]

Hi everybody. I have suffered bad with this symptoms since close to to the beginning of my c/t stop of ativan. It sent me to the er once. I thought my eyes were coming out of my head. Its horribly distressing.

I look forward to meeting some folks here. I continue to ask for relief for us all for all the symptoms this medicine brings about.

[[BJ...]]

Count me in as someone enduring this delightful symptom.

[[mi...]]

Hi native.......sorry you qualify to join our club ....but you are welcome here.....You went off alot of ativan at once that can be so brutal. Are you able to do much? How do you deal with this? I try, but sometimes, I just cannot do much. I c/t off of clonopin in feb, the following 4 to 5 wks. were hideous....so much so that I reinstated, it did not change anything but maybe kept me on this joyride a few mos. longer. I wish drs. knew more about what they prescribe. Mine said he would let me do what I wanted because he did not know much about w/d, thanks doc!! Oh well, it is what it is, and the only thing I whine about now is my head and stomach, that is enough.

 

Come back native we need to support one another. I am sending healing thoughts your way.....m

[[mi...]]

Hi Bjames.....the party is getting going now, the more the merrier....I just wish it was a really fun party and we were all well...we can still be a little silly on the okay days...on the bad days we can ask for support. I do not like that anyone is suffering w/ this but it is reassuring that we are not alone.

 

Are you having some good days? I hope so, I had a decent day today, it is never s/x free but I will take okay!! No ringing in my ears today, that is always a welcome surprise...I hope you are in a window....m

[[BJ...]]

Today was not so good.  I think the head pressure coincides with muscle tension and anxiety.  When I'm able to calm down even a little, the head pressure subsides. 

[[Na...]]

Hi Minnie. No i am not able to do much at this point. Tomorrow is starting my sixth week off and all i can say is a lot of physical symptoms aren't constant. Don't know one minute to the next which symptom will show up. Head pressure, tinnitus, night sweats, hot flashes, are still companions. Psychological has gotten no better. I just take it sometimes minute by minute. I try to do mind over matter. Works sometimes and not other times. I pray we all get better and soon.

[[mi...]]

I agree bjames I can feel the wave coming when I feel muscles tighten...you have not been off long so it is still acute I am guessing....I am sorry today was not so good, maybe tomorrow......m

[[mi...]]

Hi Native.....Sorry you are not able to do alot....that was so hard for me. That should get better for you soon. I started to do more and more after the first 6 wks. I am now going to the gym, working some in my garden,etc. So it does get better.....I still have head pressure,ringing in my ears, benzo belly and night sweats. I am sorry you have to deal w/ the psychological stuff, that passed me by, and I am grateful for that. It sounds like we have alot of the same physical s/x, they are sure uncomfortable. I am weary of them.....one day at a time right? I cannot not even think about how long this will or will not last.

 

I am glad your s/x are not constant, that is good for not being off very long. I also work on the mind over matter, and like you sometimes it works, and sometimes not. At least we are trying!!.....I hope you keep getting better and better soon.....m

[[Co...]]

Bjames....I find the same to be true....the muscles in my neck at the base of my neck tense up and make it worse. I wake up now every morning with buzzing that at some point morphs to the head pressure. I thought it was getting bettter but it actually becoming more constant. Yesterday I think I had nerve pain in my head...a shot of pain from the base of my neck through the back of my head.If it wasn't for the head pressure I would be at 80% on most days.

.....The only thing that helps me even a little is a hot pack to my neck and some neck stretching exercises that my physical therapist taught me...lean your head over your shoulder ( aim for having your ear square over the shoulder ( of course you can not get your ear to your shoulder...the positioning is the point). With the arm of the same side lift your hand to the top of your head...using your index finger gently press your head a little more towards your shoulder...gently. Hold the 'pull ' to a count of 15. ..Repeat the same on the other side. This stretches some of the muscles and tendons of the neck. When it is really bad I use a half dose ( 12 mg)  of Bonnie ( drammamine)... sometimes I think it helps the buzzing.

.......This is truly a miserable anxiety producing s/x.  .Wishing everyone relief today....coop

[[BJ...]]

Anybody else have pressure that manifests as sinus congestion?  I've been able to confirm with reliable ENTS that I don't have sinusitus, any infections, or any structural issues with the nose that would cause a problem.  I never had this until about four months ago, so I'm sure withdrawal plays a part somehow, but I'm not sure why.

 

I've had the myofascial trigger points in my neck and face deactivated, but the problems persist.  It has let up some over the past week, but it's still bothersome.  My cheeks, under my eyes, forehead, and suboccipital muscles are just extremely tight.  So are the upper traps.

 

Is a little over nine weeks off still considered acute?  I feel a lot of physical symptoms have let up, like I rarely get palpitations anymore (thankfully), but this one persists.

 

Hope everyone else is doing better with the head pressure stuff these days.

[[...]]

Hello everyone! 

 

BJ and Coop, I can totally relate regarding the muscle tension.  Mine's very severe ... traps/neck/face/cheeks/occipitals ... and they tense up within seconds of waking up in the morning, and don't let up until I fall asleep.  I feel muscles tense up that I don't think the average person even realizes they have, lol (eg eyebrow, nose, EARS).  BJ, I even took anti-biotics for what I thought was chronic sinus infections and finally had a CT scan which revealed no blockage!  Have you tried nasal rinses using a neti pot?

 

I did a lot of exercises and stretching at one point, but I felt it might be hurting me more than doing good.  I also spent an arm and a leg running from one physical therapist to another, to chiros, to massage therapists, etc, etc, trying to find someone who knew about trigger points.  They all claimed they did but when I got there, it was evident that they really didn't.  It seems to be quite a controversial thing those trigger points.  I even had dry needling and then marcaine injections!  Sheesh!  The only thing that provides some relief is Cyclobenzaprine (Flexeril), but it comes with its own side effects so I take it very sparingly.

 

Coop, does the dramamine help with the tension, or just the buzzing?

 

Minnie, that's so great you're back at the gym and feeling a little better. 

 

Sending good healing vibes to everyone ... may our heads clear up day by day!