Just starting my 12 month and head symptoms worse than ever

[[WU...]]

Just incredible how much squeezing and pain there is after all this time. It has to be the worst symptom ever invented and absolutely no sign of it easing off, if anything it just keeps ramping up even more. Anyone else have this at a similar time?

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12 minutes ago, [[W...] said:

Just incredible how much squeezing and pain there is after all this time. It has to be the worst symptom ever invented and absolutely no sign of it easing off, if anything it just keeps ramping up even more. Anyone else have this at a similar time?

Squeezing and pain are still with me. I'm 10 and something months off. Luckily, i don't have it all the time and the parts of my body vary but the intensity is much the same. The worst is the head. Sometimes the pain and squeezing go in waves throughout my body and stay wherever they choose for a while and it's a kind of relief. The further off my poor head, the better.

I'm really sorry you're going through this hell too. I hope with all my heart all the PAIN is going to evaporate one wonderful day and the squeezing will happily follow it.

[[WU...]]

Its crazy how you get it all over and I just get the squeezing in the head and only right side. I wouldn't mind some variety at this point ! Not really, its just relentless. All muscles radiating from the head to right shoulder, down the right back feel hard as nails, absolutely no stretch in them at all. 

I hope yours doesn't last as long. Actually just seen you've been off since late March 23 so I'm just a couple of weeks ahead of you as it was March 4th I stopped. 

Edited February 6 by [WU...]

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How's the blood pressure?

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1 hour ago, [[W...] said:

Its crazy how you get it all over and I just get the squeezing in the head and only right side. I wouldn't mind some variety at this point ! Not really, its just relentless. All muscles radiating from the head to right shoulder, down the right back feel hard as nails, absolutely no stretch in them at all. 

I hope yours doesn't last as long. Actually just seen you've been off since late March 23 so I'm just a couple of weeks ahead of you as it was March 4th I stopped. 

So it's about the same time) 

Yes, the head is the worst and i had practically nonstop headache while in tolerance. It was pure HELL. Now it certainly stops for a day or more, if i'm lucky, and i can, at least, tell the pain from the squeezing and the pain sometimes goes down my body and leaves the head alone. It's a welcome change. 

How long have you had this kind of squeezing and pain? Since you finished your taper or before that?

Edited February 6 by [...]

[[WU...]]

@[...] The pain was there from beginning of CT but the squeezing started maybe month 8 or 9 and has steadily become more intense. The central points of the squeezing change from behind the nose, cheek, deep inside the ear, top of head, back of head, roof of the mouth. Could be fascia or muscle or both, who knows and no way of telling.   It is pure hell as you say.  Did your squeezing start later as well?

 

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47 minutes ago, [[W...] said:

@[...] The pain was there from beginning of CT but the squeezing started maybe month 8 or 9 and has steadily become more intense. The central points of the squeezing change from behind the nose, cheek, deep inside the ear, top of head, back of head, roof of the mouth. Could be fascia or muscle or both, who knows and no way of telling.   It is pure hell as you say.  Did your squeezing start later as well?

Wu Wei, the squeezing developed within three weeks from the 1 day of tapering. It grew and grew and grew... It was everywhere, not just head. The first time the squeezing started to leave me was June and it was my low back, not the head or neck(

The same points of squeezing except the mouth. The most stiff are at the back of my head, above the neck. I think it helps if i stretch them. Not sure. But i feel the muscles cracking and it seems to help... 

Is the squeezing  traveling from one point to another or torturing you from all of them at onse?

Edited February 6 by [...]

[[Pi...]]

20 months CT. Muscle pain started to ease off a little around month 12. I work up this morning with a lot of muscle and joint pain. Intensity at least now varies. Energy level has improved some. Depression and fear still tough but not overwhelming any more most days. Sleep is improving. Head pressure, brain fog, headaches and vision issues with burning eyes still a problem most days. The only way out is to just keep going. Every day that passes is one day closer to the exit door. That's what keeps me going. 

[[WU...]]

 

"Wu Wei, the squeezing developed within three weeks from the 1 day of tapering. It grew and grew and grew... It was everywhere, not just head. The first time the squeezing started to leave me was June and it was my low back, not the head or neck(

The same points of squeezing except the mouth. The most stiff are at the back of my head, above the neck. I think it helps if i stretch them. Not sure. But i feel the muscles cracking and it seems to help... 

Is the squeezing  traveling from one point to another or torturing you from all of them at onse?"

 

Its is interesting to get into the detail to compare.  Definitely the worst is back of the head where the spine joins. I guess that is the belly of the beast in terms of CNS and GABA receptors, where all the action takes is concentrated before it makes it way to the rest of the body. I occasionally wear a very soft neck collar just to keep some kind of equilibrium, but not for very long. Yes I get those loud cracks too, which may be a good thing I dunno.  The squeezing tends to occur from point to point and sometimes lately it feels the whole head is squeezing at once which is probably why I feel it is getting worse.  I'm not sure if stretching helps for me as nothing seems to be actually stretching, just pulling the surrounding tissue, eeek!  

 

[[WU...]]

@[Pi...] Interesting to hear your journey as you are also CT. You mention fear and I think this is another element to consider as that will of course produce tension to add into the mix. Hard to behave with indifference to these symptoms though, but I  do sometimes announce out loud " I am not afraid of these symptoms so you can carry on and I don't care"  Yes keep going is the way, do bits and pieces here and there with lots of rests, horrible as it feels.

@[...] sorry meant to reply and say I don't expect my blood pressure is worth measuring as we have been benzoed so nothing behaves as normal and even if it was wildly out of line there is nothing I can do about it anyway so may as well save myself any further anxiety!

[[Pi...]]

The physical pain no longer scares me it aggravates me. Just part of the deal. Actually I live in constant frustration because my mind is clear enough to know this is all BS and not me. The old me was always there and is starting to emerge again just painfully slow.  Like I said to someone else it's like being possessed by a demon in my brain fighting to control me. I'm fighting my way back but not there yet. It's a war inside my head I'm determined to win. I feel battling it as you are able speeds healing. The physical pain is what it is. I'm not sure if worrying about BP is even worth the effort. You system is so triggered you will never know what a real reading is because your never calm especially when the white coat wraps that cuff around your arm. Any meds they give you are going to trigger symptoms and you can't trust the system anyway. Also stopped all vaccinations when I went CT. Been keeping vitamin D levels up (If you take it you must take with vitamin K).This has defiantly helped. Check out Dr. Breg's on youtube. Just my opinion you do what works for you. Try to find a good functional doctor who can make you healthy and not feed you pills to cover symptoms which is how we got here in the first place. If you have a history of BP issues you obviously you can't ignore it. 

 

https://www.drberg.com/blog/how-much-vitamin-d-do-i-need-surprising

[[WU...]]

@[Pi...] I can't even take Vit D as I don't want anything in the shape of a pill ! 

 

 

 

 

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@[WU...], ))) I like the way you make sad things seem a bit funnier. It helps to know you have the cracking too. It's weird... But mine isn't always loud. Sometimes my head isn't in pain but feels full of tension and i can hear the tiny crunching  all over the head, rather somewhere inside, as if foam bubbles are bursting.

The whole head is squeezing... sounds too painful and i know by experience it is. Hope it means the pain and squeezing are about to pack and leave. You know i've thought of a collar. It definitely must help a bit.

[[WU...]]

@[...] That's a very good description you gave, same for me too. I sometimes use an ice pack which feels good for a while but it doesn't last long. 

I try to see a funny side, just to give my brain a rest from all the angst and to look at this experience from a distance but often all I can do is cry on the sofa like a wounded animal.  And to think this was medication ! 

[[Ma...]]

6 hours ago, [[P...] said:

20 months CT. Muscle pain started to ease off a little around month 12. I work up this morning with a lot of muscle and joint pain. Intensity at least now varies. Energy level has improved some. Depression and fear still tough but not overwhelming any more most days. Sleep is improving. Head pressure, brain fog, headaches and vision issues with burning eyes still a problem most days. The only way out is to just keep going. Every day that passes is one day closer to the exit door. That's what keeps me going. 

I’m sorry for interrupting but what does CT mean. I’m obviously new to this site.

[[WU...]]

@[Ma...] CT is cold turkey

Edited February 6 by [WU...]

[[Ma...]]

Oh my. God bless you. I have been told to slow taper. I hope to avoid some of the withdrawals by going very slowly. Or at least the severity.

You’re very brave and strong. I hope you symptoms lessen very soon.

Bless you 
 

[[WU...]]

Thanks MacDaddy, going on a slow taper is the more sensible way to go.  Good luck

 

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1 hour ago, [[W...] said:

@[...] That's a very good description you gave, same for me too. I sometimes use an ice pack which feels good for a while but it doesn't last long. 

I try to see a funny side, just to give my brain a rest from all the angst and to look at this experience from a distance but often all I can do is cry on the sofa like a wounded animal.  And to think this was medication ! 

Yes, it was supposed to be medication... The same for me. I took it every night and thought i was treating something. Don't know what.

It's so piercingly sad what you are writing. I do feel for you but can't cry. All the tears have been gone since i hit tolerance. But even if you feel like crying you do write things which make the withdrawal seem less profound. Thanks for this!) This way the ordeal is a bit easier to cope with.

[[dj...]]

I have awful “head symptoms.”  I have several different ones.  All faulty nerve activity.  The pain is only so bad every so often.  Typically it’s a lot of tingling, prickling, air bubbles in my head sensation, or this feeling like my head is made of concrete.  I absolutely hate that last one.  I have it right now.  And when I have it it’s like my mind goes totally blank and I have no emotions whatsoever.  

[[wi...]]

11 hours ago, [[W...] said:

Just incredible how much squeezing and pain there is after all this time. It has to be the worst symptom ever invented and absolutely no sign of it easing off, if anything it just keeps ramping up even more. Anyone else have this at a similar time?

I have it all of the time . It also always involves heightened panic. Its like a NS firestorm.

I hate that you guys are suffering too, but I’m glad we can share and support each other.

[[ro...]]

7 minutes ago, [[w...] said:

I have it all of the time . It also always involves heightened panic. Its like a NS firestorm.

I hate that you guys are suffering too, but I’m glad we can share and support each other.

Oh yeah. I feel like it’s just total neurotoxicity. Brain burns and I have tremendous pressure and dizziness in the center of my brain. It’s like my brain stem was damaged. Headaches in the center of my head. Throbbing burning. Feels like I have a brick in my brain. Truly horrifying to feel this way all the time. And the fear and panic just loops and is constant. All the time. I don’t know how I keep going like this. Thanks for the reply. Hope you heel fully. And fast. ❤️

Edited February 7 by [ro...]
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[[Pi...]]

I still have constant head pressure right between the eyes and my nose always feels cold. Endless sinus drip 24/7. I have always had sinus allergies so I assumed that's what it was. Mornings are body aches until mid day and then brain fog, sinus pressure and blurry vision. Sometimes my head is the clearest and I feel the best from 10:00 to 1 :00 AM. Mornings are the worst for me. Takes till around 11:00 am to start functioning. Luckily I'm retired.

[[Wi...]]

My head symptoms are horrible too. I had head pressure for months in waves and now in this killer wave there is just head shit all the time. It’s not only pressure anymore. My head is electrified, seems to be the source of electric pulsing that goes down my neck, there is a lot of nerve pain all over my head, electrical storms, brain dropping, brain pulling, brain zapping. It has all made me bedridden because pushing through it causes unbearable symptoms. I wonder if that will ever lift. 

[[Pi...]]

I've become afraid to drive and I was on the road all my life. Go figure. It's making me crazy because i know it makes no sense.