support for those w/ head pressure

[[Co...]]

Well,  this is wild crazy stuff....4 hours after my previous post...s/x 80% better...dizziness had devolved into slight boatiness...anxiety...gone...intrusive thoughts ..less than minimal..depression ..mild sadness of missing my kids...which is I think in the realm of ' normal. ' life...fatigue..still present.

....sat on the patio with a book and decaf. ...

...who knows why...or what my s/x will be tomorrow.,I am mystified...just mystified...font even know what to say...coop

[[mi...]]

Hi coop.....this is the craziest ride I have ever been on. I started to feel bad right before we left the beach yesterday, I can always tell now when it is going to get bad the ringing in my ears ramps up......At least I can go to sleep when I feel bad....that is a relief! I felt a little better today.....I never feel quite right ......I just feel pretty bad or a little better than bad.....it is so hard to describe.....

 

It must be so hard for you with the dizziness and other head stuff since you did not have it until recently....I have had this the whole way so even though I am not at all comfortable with these s/x they are nothing new.....if I were to develop something new like you did at this point, I would find it very hard to deal with.....so you are the mighty women!!

 

It is so very mystifying to say the least and it is so hard to believe sometimes that I will ever feel normal again, I know we will, but when we do this day after day, well, it is just hard to be positive all of the time....I think I just move around in a daze sometimes and go thru the motions.....I am very grateful to not feel like acute days though.....that was a horror show.....

 

I have been going to the gym about 3x a wk. I really have to push myself to go. I always  feel like I just cannot physically do it...but I just make myself.......it helps me feel like I am doing something positive even if I can only do 1/2 hr....so on we go coop, we will get there I know we will....

 

Do your kids live close to you? I live in the nw. my oldest son lives close to me, my daughter lives in Boston, my youngest son lives in

co. I wish they all lived close to me I miss them alot....families seem so scattered these days...

 

I hope things greatly improve for you soon, you are due for some major healing at this point.....m

 

 

[[je...]]

Hi guys, my head pressure is horrid today. Off the charts bad, I feel like I can't think at all and my head just aches. This is the worst sx , I'm ready for it to go.

[[mi...]]

Hi Lm.....thank you we did have a nice time......I was fascinated by all of the kites, so many sizes and colors........I have not flown one since I was a kid......so my husband bought me one....walking in the ocean while flying my kite I almost forgot about my s/x almost...

 

I agree these s/x are evil and wicked....I am sorry you were slammed today it is so tiresome, it just has to leave us all soon...we all need to be healed and get back to the healthly lives that are waiting for us....it just cannot be long now....

 

Hope you feel relief soon Lm.....m

[[mi...]]

Hi jenny......I am sorry you are feeling bad.....it is so relentless....I just want to run screaming sometimes with the head s/x they can drive me batty....I hope you have been having some good days...

 

Take care.....m

[[Co...]]

Thanks Minnie for the support...it lifted again this afternoon so I am thankful for that. No headache or head pressure this afternoon. Waves of dizziness.. especially when I stand up after lying down. The dizziness triggers a zap of anxiety but it passes..

....I live in the PNW...in Washington State...it is beautiful and starting to be beautifu early Fall weather. My son and dil and 3 grandsons and my daughter all live close. It would be hard to have them far away. .

.....thanks again Minnie for starting this thread..it has been such a help to me....wishing you relief from this....coop

[[mi...]]

Hi coop...I am glad it has lifted for you again seems like you are getting more relief lately I hope that is correct......you so deserve it....all of us do.....I am glad this thread is still going it helps me alot to...I hope the dizziness lets up that would be difficult to deal with.

 

I am glad your kids live close to you, now I remember you talking about your grandkids, they are a blessing, we can spoil them and give them back!

 

I also live in wa. I do love fall, but I hate to see summer end.

 

sleep well.....m

[[Lo...]]

Hi Lm.....thank you we did have a nice time......I was fascinated by all of the kites, so many sizes and colors........I have not flown one since I was a kid......so my husband bought me one....walking in the ocean while flying my kite I almost forgot about my s/x almost...

 

I agree these s/x are evil and wicked....I am sorry you were slammed today it is so tiresome, it just has to leave us all soon...we all need to be healed and get back to the healthly lives that are waiting for us....it just cannot be long now....

 

Hope you feel relief soon Lm.....m

 

Oh wow, you flew a kite! Amazing!!! Yesterday eve despite weak legs and a heavy head we got some air and went to the river. It was gorgeous out. I'm on one last medication, very lowdose...I did not take it last night. I didn't take it on Friday night & when I woke up I felt pretty good. Today I felt more alert...however my balance is somewhat more off and my vision is so jumpy :-(

 

I just don't know guys...

 

Knock on wood...the head pressure is gone. May I need to call my doctor and wean off of it. It's low dose naltrexone. I think it's time to get off of it but probably have to do it in stages.

[[Ch...]]

I dont know if this counts as head pressure or not but I've had head symptoms for so many months, along with zillions of other symptoms.

 

I have a constant awful pressure feeling in my nose and behind my eye which extends into my left ear. It's really awful. Like a sinus problem but unlike any sinus problem I've ever had before. At night, my breathing is really loud. It feels like there's something sitting in my head all the time. Really awful. Occasionally it lets up but I have this more often than I don't.

 

Sometimes I feel my brain shaking in my skull and it feels like my brain is too big for my head. I feel like I want someone to go into my head and take out whatever it feels like is in there. It drives me insane.

[[mi...]]

Hi LM..... I am so glad you got out to the river, water is so soothing. I am thankful I have gotten to the point where I want to go places. That is a positive improvement.......the desire to engage in life again.... I know the day will soon come for all of us when we will go to these places and not give a thought to the s/x.....It is coming soon Lm.......the head pressure let up that is fantastic!!

 

  It is amazing how meds can affect us....I used to read side affects and think that will not happen to me.....wrong...I am now so afraid of any meds.....I do not know the med you are trying to come off of, what is it for? Does it act like benzos? I sure hope not, it sounds like you felt better when you missed a few doses..

 

I hope you are feeling well...m

[[mi...]]

Hi Chaff.....welcome!! I am sorry you have these s/x they are so difficult to live with... all that you describe is very familiar to me.....there are so many sensations going on in my brain that are hard to describe, so pressure was just one I used.......It is so creepy it can absolutely make you crazy......

 

I used to get really worked up telling myself I could not take this one more second.....well I finally settled down a bit.....I have had this for 7 mos.....it has not killed me, I have not went insane, nothing I feared about it has happened, it is just so extremely uncomfortable, knowing it will go away is my comfort......

 

We all need reassurance and if you need it we are here for you so come back and let us know how you are doing.....

 

I hope you feel better soon........m

[[Lo...]]

It's low dose naltrexone. Got on it last June to help with Lyme Disease and inflammation in my brain. But I think the 4.5mg dose is too much.

 

It's nothing like benzodiazepines thank God!

 

I skipped a dose last night and today I feel like hell BUT I don't know if i feel like this because I started a potassium supplement yesterday.

 

After I took that supplement I felt weird. Leg weakness, balance more off, cement head :-(

 

I'm thinking of just getting my potassium through food...

 

Sigh...I just got finished crying a couple of times because I was forced to go over to the finance department which is all the way on the other side of the building and my balance is really off in the spatial disorientation is a bit much :-(

 

it would be so nice to get a great job offer right now from a loving and nurturing place it understands all the time going through physically.

[[Ch...]]

Thank you Minnie. I'm so sorry you have been similarly afflicted.

 

Hello lovingMother. I just saw you on my akathisia thread :-) I think I'm going to become a member of lots of support groups as I have an insane number of symptoms!!!

[[mi...]]

Yes LM thank god it is nothing like benzos......do you know if you do have lyme disease or does it have s/x similar to w/d? I sure hope for you it is all w/d.....this awful stuff, makes you feel so sick you think this cannot possibly be from just a pill, really???

 

Work can be a distraction....but can also feel awful when we have to act normal and feel anything but normal.....I am sorry you feel so off balance.....even knowing we will get better does not help the ( in the moment discomfort ) the things we did without thinking can now take so much concentration......well, it is just exhausting, this constant battle day after day....never knowing if we will dodge the bullet minute by minute....

 

I hope the day gets easier for you.......m

[[Lo...]]

Yes LM thank god it is nothing like benzos......do you know if you do have lyme disease or does it have s/x similar to w/d? I sure hope for you it is all w/d.....this awful stuff, makes you feel so sick you think this cannot possibly be from just a pill, really???

 

Work can be a distraction....but can also feel awful when we have to act normal and feel anything but normal.....I am sorry you feel so off balance.....even knowing we will get better does not help the ( in the moment discomfort ) the things we did without thinking can now take so much concentration......well, it is just exhausting, this constant battle day after day....never knowing if we will dodge the bullet minute by minute....

 

I hope the day gets easier for you.......m

 

I was very ill with Lyme Disease...the whole reason I got on stupid benzos. It was the pits! I was diagnosed Dec 2012. I'm a lot better. A lot of what I am going through  now is benzo W/D and Lyme clean up (the damage after the storm). Mostly W/D though :-(

[[Lo...]]

 

Sometimes I feel my brain shaking in my skull and it feels like my brain is too big for my head. I feel like I want someone to go into my head and take out whatever it feels like is in there. It drives me insane.

 

Yes! I have the same thing...the worst!  :'(

[[mi...]]

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

[[je...]]

Such great news Minnie, I'm so happy for you

[[mi...]]

Thanks Jenny.....it is a good feeling....any improvement is so nice....hope you are in a window.....m

[[Co...]]

Minnie...so very glad to hear that you are seeing some change in your head pressure... good grief...7 months is unbelievable...yay for you.

...Mine has been minimal for the past 3 days....hoping with all I have that this is the end of it. 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.

....Minnie am hoping for you that you never see this again. ..

....sending you thoughts for big healing....coop

[[dr...]]

I dont know if this counts as head pressure or not but I've had head symptoms for so many months, along with zillions of other symptoms.

 

I have a constant awful pressure feeling in my nose and behind my eye which extends into my left ear. It's really awful. Like a sinus problem but unlike any sinus problem I've ever had before. At night, my breathing is really loud. It feels like there's something sitting in my head all the time. Really awful. Occasionally it lets up but I have this more often than I don't.

 

Sometimes I feel my brain shaking in my skull and it feels like my brain is too big for my head. I feel like I want someone to go into my head and take out whatever it feels like is in there. It drives me insane.

 

Iread this and laughed and teared up.  Not that this is funny but because this is what I have.  My GF is complaining I suddenly snore and wake her up all night.  My sinuses go from being clear to so stuffed up I can hardly breathe.  I have no infection or allergies.  My head also feels so "full" like I am in a constant head rush state.  While all suymptoms suck this one is up there with the worst of them.  I can't focus or function on anything important.  This is the second time I got walloped with this symptoma and it has been here a week so far. 

It really gets my health anxiety going because it is so hard to ignore.

[[Lo...]]

Thanks Jenny.....it is a good feeling....any improvement is so nice....hope you are in a window.....m

 

YAY Minnie! 

[[...]]

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?

[[Lo...]]

 

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 have the boatiness...always feel like I am swaying or rocking and when I walk straight I feel like my body wants to turn to the left (hence when they did an inner ear test that confirmed it as well...inner ear is angry). It's horrible and embarrassing and frustrating! 

[[...]]

 

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 have the boatiness...always feel like I am swaying or rocking and when I walk straight I feel like my body wants to turn to the left (hence when they did an inner ear test that confirmed it as well...inner ear is angry). It's horrible and embarrassing and frustrating! 

 

Hey LM!  So they actually found something wrong with your inner ear?  All my tests came back normal. 

 

My facial/head muscles pull so badly that I feel like my head is being pulled to the side, so hard to stand for any length of time, I just want to keel over, which is what I do, go and lie/sit down and then I have to deal with the rocking and bobbing and swaying.  OMG!  I have no sense of humor with this anymore. 

 

Too much, too long, I am feeling very, very worn down!!!