Worst head pressure, ears ringing and fear at almost 13 months benzo free!

Please, can anyone relate? I’m not sleeping well either.

 

Thanks, Sandy

Hello Sandy.  I have read several of your posts and find that you and I have quite a lot in common!  I am a youngish, about to be 74 year old wife, mother, and, hopefully, a grandmother in the not too distant future.  And, like you, I have been having some bad head pain, burning, and pressure, and am in a wave of about 14 days, after a wonderful two week window.  I feel blessed to have enjoyed the holidays this year, as the past two years I was pretty much down and out with benzo interdose withdrawal symptoms, and taper from the evil Valium. I suffered so long with a myriad of symptoms that so many doctors and specialists failed to connect to the Valium   Luckily, I found a wonderful young neurologist who is very benzo savvy, who told me that my symptoms were all from the Valium!  He, of course, tested me for a wide range of neurological diseases, and found nothing!  He is being very supportive and reassures me that I will recover when my body returns to its normal homeostasis state.  Time and patience is what he preaches, and, as we well know, that is truly all we can expect.  I will “celebrate” my 10 month anniversary from my last dose tomorrow, and am hoping that I will feel better than I have felt for the past two weeks.  Symptoms now are shakiness, headache/pain/pressure/burning, and some GI issues.  Oh, and some anxiety that I will never heal.  Most of my symptoms have waxed and waned over the past ten months, and several times I have felt almost healed.  Will stop here as I may get timed out......will post more after you post back, if you choose to do so.  I hope you begin to feel better sooner than later

Sorry, do you have pressure in your head or are your spastic muscles pressing ON your head?

Thanks for responding, gardenguru. I enjoyed reading your post. I’m a 72 year old wife, mother and grandmother. It’s nice to know that I’m not the only grandmother going through this. I had some pretty rough waves during my 10th month as well. For the most part I have really good days. This wave started about 2 weeks ago. It’s been very challenging. I hope it ends soon. My fear gets the best of me when I get head pressure.

 

Wishing you well, Sandy

Hi Arnold! Thanks for responding. I’m not sure if it’s head pressure or spastic muscles. How can you tell the difference?

 

Thanks, Sandy

Hi Arnold! Thanks for responding. I’m not sure if it’s head pressure or spastic muscles. How can you tell the difference?

 

Thanks, Sandy

 

 

 

Hi Sandy! The pressure in the head is felt in the brain, while in me, for example, the muscles press on the head and face. I can feel them stretching out in tension, as if they want to crush bones. Do you still have tight spastic muscles anywhere?

Thanks, Sandy.  Yes, we well aged ladies just have to keep on keeping on, as we have so much more to give and receive!  Enjoy your grand-babies...I so long for some

Arnold, I don’t have tight muscles elsewhere in my body.

 

Gardenguru, my grand babies bring me such joy!💕

Hi Sandy.  How are you feeling today....any improvement? 

Please, can anyone relate? I’m not sleeping well either.

 

Thanks, Sandy

 

Hi Sandy,

 

Mine started as neck pressure - as if my head was being squeezed down into my shoulders like and accordion.  Unrelenting, intense, starting from about half way through my rapid taper (about Month 2 of 4).  It lasted 2 1/2 years, finally began abating a bit, but also began including some chronic neck pain, presumably from 2 years of involuntarily contracted muscles.

 

But then, it morphed into a very intense wave of head, ear, upper jaw and neck pressure near the end of Year 2 / beginning of Year 3 (Jan-Feb 2020).  Sleepless, tinnitus - a lot of the the regular PAWS stuff that came along with it.

 

Thankfully, that 'only' lasted a few weeks before it settled down.  I've never lost the residual sensations of pressure in the neck and areas on the left side of my head, ear, upper jaw, but they are far less intense.

 

I have been left with pretty bad neck pain on the left.  My doctor scripted physical therapy in October, which I dreaded due more to the overlap of 24 years of ME/cfs including 3 1/2 years of PAWS than going to the facility during covid.  It took a long time with adjustments  for my comorbid illness (video visits; slower progression), but it finally seems to be making a difference.

 

I'm 'only' 61, but have been battered by ME/cfs for 24 years (a body-wide post-viral syndrome, like many Covid Long-Haulers are ending up with now), so I feel 80ish most days.   But overall, and like most folks seem to say, it does get a little better.  It just takes s-o-o-o-o l-o-n-g!  You'll get there!

Yep I've got tinnitus and fear at 13mo myself.

Hi Gardenguru! Sorry I took so long to respond. I had 1 good day and yesterday, the 23rd was quite the challenge. I hope this goes away soon!

 

Hope you are doing well, Sandy

Thanks for sharing, MountainEar. I’m not experiencing much neck pain, but moderate pressure in my head and face. My hears are hissing and my vision is off a little. I’ve been checked out medically and all tests are normal. I have to assume it’s my body still healing.

 

I wish you well, Sandy

I have neck pain and pressure, trouble sleeping and very loud and continuous Tinnitus, also a heap of digestive problems.  A return of Benzo Withdrawal symptoms after surgery, extreme stress and Ativan given prior to surgery and during.  Gardenguru, I have you all beat, I am 78 and one question, are you a gardener?  I love to garden.

Hi Spazzie! I think that we older women are pretty tough!

 

Wishing you well, Sandy

Like you, I am very up and down with weird head symptoms.....been in a pretty bad wave for about two weeks!  Probably  the longest wave ever and so frustrating because I did well for a couple of weeks during the holidays!  My oh my oh my.....wouldn’t it be “loverly” to wake up tomorrow and feel like our good old selves?  I would pop with joy for sure and I bet you would, too!!!

Hi Sandy, Yes, we are. 

Sorry, do you have pressure in your head or are your spastic muscles pressing ON your head?

 

Arnold have you ever taken fish oils?  For the nerves?

Sorry, do you have pressure in your head or are your spastic muscles pressing ON your head?

 

Arnold have you ever taken fish oils?  For the nerves?

 

 

 

About 2, 5 years ago, even before the disease. Right now I have been taking several supplements that are thought to be good for the brain, but I have not seen any benefit from them. I just don't know how supplementation or diet can help after some of the brain cells have died. What experience do you have with fish oil?

Sorry, do you have pressure in your head or are your spastic muscles pressing ON your head?

 

Arnold have you ever taken fish oils?  For the nerves?

 

 

 

About 2, 5 years ago, even before the disease. Right now I have been taking several supplements that are thought to be good for the brain, but I have not seen any benefit from them. I just don't know how supplementation or diet can help after some of the brain cells have died. What experience do you have with fish oil?

 

fish oils over time repair nerve damage and help the CNS, you can google “ fish oils central nervous system” and find many things like this link below, I’ve been on them

since getting off benzo. Someone close to me who miraculously fully recovered from an absolute debilitating injurie used fish oils to fully recovery over 3 years:

 

https://www.sciencedaily.com/releases/2009/12/091216130718.htm

 

I take DHA/EPA fish oils, and make sure they are “fresh” and not old.  You wouldn’t notice a difference for at least a year, but gradually over time it helps repair nerve damage.  I take 3x of them a day.

 

i have moving head pressure (seems internal on the brain, a coolness sensation, sometimes a little achey), feels like its on the brain, like its causing my dp/dr and my COG Fog.  Sometimes its just on top of my head, sometimes its the top and the sides (temple) and if i walk of try cardio it also hits my nose area and causes more pressure.  very annoying.

 

FoeHammer, Thank you, I have already ordered and will accept. I don't have much of a choice, although this pain and pressure is constant and I feel like it's forever.

Can't you tell what symptoms your loved ones had who recovered?

A completely dead Achilles tendon (dead foot) that the doctor said might never function again.  It came back slowly over time, he was taking fish oils for a while.  He dealt with a lot of nerve damage that has completely healed.  Fish oils work like the jelly fish protein.  But i haven’t found any supplements from jelly fish yet.

A completely dead Achilles tendon (dead foot) that the doctor said might never function again.  It came back slowly over time, he was taking fish oils for a while.  He dealt with a lot of nerve damage that has completely healed.  Fish oils work like the jelly fish protein.  But i haven’t found any supplements from jelly fish yet.

 

Thank you very much. It's just that I have never heard that someone had such symptoms as mine and he was cured. it's impossible.

FoeHammer777,  Do you have a spasm of the muscles in your head?

 

My muscles are pressing with incredible force on the bones, then trying to break away from them.

 

I don’t think I do.  The only muscles I’ve seen move on my body are just a couple in my legs from time to time, every now and then (once a month if that) a small twitch in the face.  I mostly have static interior head pressure that likes to move on its own from time to time around my face and top of my head.  Whats weird is I get physically sick when the pressure is more focused on the front towards the nose.