All those suffering with headaches coming from many sources, i.e., jaw, neck, sinuses, temples, etc.

[[Ga...]]

I am now at 48 months post-taper from a one year use of Valium followed by a four month taper.  I have suffered very badly with headaches of all types, but mainly they seem to originate from my lower neck and up into the top of my head.  I have not been able to pinpoint what, if anything, brings them on?!  All my doctors have ruled out migraines and are not totally sure what is causing them, especially because of their long time duration!  MRI’s show no tumors or disease.

I have read of so many buddies (even those not protracted) who also complain of head pain and pressure, but all of us never seem to agree as to what is causing them and why they last so long.  Also, has anyone ever found a way to relieve them without resorting to any medicine that might be harmful?

In May of 2022, I almost wrote my success story and noted that my “burning brain” symptom had mostly disappeared.  What a relief that was, but then I had to go on my first antibiotic for a UTI and the headaches came back.  They are less frequent, but for the past three days I have had a very persistent, painful one.

Please share if you also suffer with bad head pain!

GG

 

Edited April 21 by [Ga...]
Grammar corrections

[[Sc...]]

What type of headache do you feel?. I have a severe constant pressure which is muscle tension related. No pain but severe pressure crushing tension all over my head sides and top, head feels so heavy can barely stand. Constant and its had got worse over the years. 

[[Ma...]]

I take Tylenol constantly. Last year when my brain was burning and the headaches unbearable, I purchased ice caps from Amazon and rotated them 24/7. The cold, pressure-it worked. I also purchased ice cap eye pads-brain not braining here…you know, what people wear over their eyes to sleep? Worked too.

Don’t look for a cause or explanation, or I no longer do, for any symptom as it puts me down the rabbit hole of rumination and I never find an answer!

 

[[Kr...]]

3 hours ago, [[M...] said:

Don’t look for a cause or explanation, or I no longer do, for any symptom as it puts me down the rabbit hole of rumination

So true.

[[Ga...]]

I guess I am guilty of rumination, but when the pain is bad and consistent this far out, I so wish there was a reason to be found and I could fix it and make me all better!!!!

I know the pain and pressure will go as it has before!  Yesterday was just one of those days and I am also in pain with a bad knee,

Thank you for weighing in and may we all have healthy heads in the future!

GG

[[Ga...]]

Scooby99, I have read some of your posts and know that you have had a really tough time with your ongoing head pressure…..I am so sorry!   My mom used to say there is nothing worse than a bad headache or an aching back!!  She had both off and on throughout her life, but most of her headaches were sinus related, and a bad fall left her with a permanent bad back!  

My pain varies from pressure squeezing on both sides of my head, to pain and heat emanating from my neck up into the top of my head, and then the regular types of sinus and tension headaches.  I do have some bulging disks in my neck along with arthritis, but have had those for a long time.  My headaches came after a fall in 2018, and I was given Valium as my doctor thought its muscle relaxing properties would help with the pain!  I so wish I was told to take some Tylenol for a while……but, here I am.

My headaches are much less now and only really bad when in a wave.  I am now in about a seven day wave so hopefully a window will open soon!

I hope you will find some healing from your awful head pressure, I really do!!!!

GG

[[Ga...]]

Scooby, have you had an MRI?  My headaches were so bad in the beginning that I ended up in the ER several times and I was rushed into an MRI, as the doctors thought I was either having a brain bleed, stroke or brain tumor!!!   None of those proved to be true, but I was usually given an IV of Benadryl with Ativan…felt great afterwards, but the slippery slope got even more slippery!

GG

[[...]]

I'm with you...

Hospitalized for sudden ice pick headache in center of my head a few months ago.

Currently my headaches are right between the eyebrows mostly all day with variation of intensity. Pain in center of the neck right at the skull. And my teeth flare up a few times a week.

I can't explain it but the forehead pain seems to be tied to solar plexus pain.

Hope this is just benzos and goes away soon for us.

[[Ga...]]

Hi Evn.   Thank you for your input which is valued.  I have also had the ice pick headache and it has shot me right out of my slumbering bed!   I don’t get them very often, but, when I do they scare me as they come on very quickly and randomly.  My doctors ruled out cluster headaches, thankfully.

What mystifies me is that I can wake up in the morning with a headache or head pressure and then it will slowly fade away, or, like this morning I woke up with no head symptoms, and now I can feel a headache coming one:  I have had a lot of stress this morning and I feel it definitely contributes to the head pain.  I have gone for about two months with no head issues, so I guess I am cycling in and out of waves again here at 48 months.  All sorts of head symptoms abound with many buddies reporting what we suffer with.

My teeth and gums sometimes present with pain with the head symptoms.  
Do you take anything at all for the pain?

We will heal from these head symptoms, I fully believe!!!!

GG

[[...]]

I usually do not take anything for the forehead pain. It's not severe , like a four. The icepick headache few months ago  was an 11.  I woke with it and called an ambulance as I couldn't move.  I couldn't think for about a month afterwards. Actually  I could think but it was extremely hard. I honestly thought it was over.I did eventually come out of it. About a month.

I still have moments ( 1 second) where my mind drops  and or stops and I almost go into the not able to think state.

Also yesterday I had an event. You know the twilight state your in when you are waking up? I had an episode where I stayed in that state for a  minute or so. Scary as hell.

Anyway I'm still hopeful for a full recovery. For all of us. Thanks

[[Sc...]]

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

Scooby, have you had an MRI?  My headaches were so bad in the beginning that I ended up in the ER several times and I was rushed into an MRI, as the doctors thought I was either having a brain bleed, stroke or brain tumor!!!   None of those proved to be true, but I was usually given an IV of Benadryl with Ativan…felt great afterwards, but the slippery slope got even more slippery!

GG

I had an MRI was normal. I was diagnosed with central sensitization syndrome from a doctor years ago due to rapid taper off benzos AD's. It stimulated my CNS the pressure/tension remains but the sharp stabbing pains went away.

[[Ga...]]

I have never heard of this syndrome and I wonder if other buddies have been diagnosed with it or heard of it?   How does it differ from the pain and symptoms from a benzo withdrawal?   I don’t think I cold turkeyed and my head symptoms do go away for good periods of time.  How did you receive your diagnosis?

I sure hope you get better as you have been suffering for way too long!!!!

GG

[[Sc...]]

Central sensitization is what most of us have that is those of us with neurological symptoms regarding pain. I was diagnosed by a pain specialist she said the rapid drug withdrawal sensitized my CNS. I believe this is true from my research and understanding. There is no other explanation.

 

Here is a quote "When someone takes benzodiazepines long-term (past the recommended 2-4 week period), the body undergoes profound neuroadaptations. Neuroadaptation refers to the process whereby the body compensates for the presence of a chemical in the body so that it can continue to function normally; this neuroadaptation leads to tolerance and physical dependence. Withdrawal from benzodiazepines (especially over-rapid or cold-turkey withdrawal) causes an acute under activity of GABA as well as glutamate overactivity which can sensitize and hyper-excite the central nervous system, causing excitoneurotoxicity and increasingly profound neuroadaptations. Excitoneurotoxicity is the pathological process by which nerve cells are damaged or killed by excessive stimulation by neurotransmitters, such as glutamate and similar substances.

[[Ma...]]

@[Sc...]Where is that quote from? Did it continue to state how long/if healing takes place?

[[Ga...]]

Thanks for asking, Mary!  

[[Ga...]]

Scooby, why is this not referenced by benzo wise doctors, and all the thousands of people who have been impacted terribly by benzos use and withdrawal? I have not heard about this syndrome from any of the benzo coaches who have also experienced benzo injury?  Isn’t this just another name for benzo injury and recovery?

Just curious???

GG

[[Sc...]]

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

@[Sc...]Where is that quote from? Did it continue to state how long/if healing takes place?

See here Central Sensitization

[[Sc...]]

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

Scooby, why is this not referenced by benzo wise doctors, and all the thousands of people who have been impacted terribly by benzos use and withdrawal? I have not heard about this syndrome from any of the benzo coaches who have also experienced benzo injury?  Isn’t this just another name for benzo injury and recovery?

Just curious???

GG

Not just Benzos cause this ALL psychiatric drugs do. Benzo wise doctors do not know. They are only addiction specialists. This condition is diagnosed by pain specialists (Anesthesiologists). They understand how the brains CNS gets injured by neurotoxic substances. When anyone has constant pain tension, nerve pain, muscle pain from neuro-drug toxicity and withdrawal it is central sensitization. This is why it lasts years and sometimes permanent. Basically poisoning of the nerve cells.

[[Ga...]]

Well, I do hope you get better and better, Scooby!  I am keeping the faith and am lucky to have a very supportive doctor who reassures me weekly that I am a very healthy senior citizen and that my really good windows bode well for my recovery!

GG

[[Ga...]]

Scooby, I viewed the article you mentioned and I did not see any reference to a permanent state?   Did I miss something?

[[Sc...]]

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

Scooby, I viewed the article you mentioned and I did not see any reference to a permanent state?   Did I miss something?

Well i am 11 years off all drugs with this condition. I guess that's permanent.

[[Ga...]]

I have read of a few others who were many years out and still symptomatic.  I wish you could know why you have been suffering for so very long but in the world of benzos and z drugs, there are no answers in some cases.

GG

Edited April 23 by [Ga...]
Took out a comma

[[Sc...]]

22 minutes ago, [[G...] said:

I have read of a few others who were many years out and still symptomatic.  I wish you could know why you have been suffering for so very long but in the world of benzos and z drugs, there are no answers in some cases.

GG

If my neurological symptoms have not resolved in 11 years i believe it is a CSS. There is no other explanation. 

[[Na...]]

4 hours ago, [[S...] said:

Not just Benzos cause this ALL psychiatric drugs do. Benzo wise doctors do not know. They are only addiction specialists. This condition is diagnosed by pain specialists (Anesthesiologists). They understand how the brains CNS gets injured by neurotoxic substances. When anyone has constant pain tension, nerve pain, muscle pain from neuro-drug toxicity and withdrawal it is central sensitization. This is why it lasts years and sometimes permanent. Basically poisoning of the nerve cells.

That's a pretty big broom to sweep with. I don't think any of us have any idea what ALL psychiatric drugs do. I certainly don't. 

I understand where you're coming from. We've been damaged by benzos, z-drugs, and maybe for some of us other drugs like SSRIs, antipsychotics, etc. also. So I'm pretty damned skeptical of any of these sorts of drugs as well. But I certainly don't know what they ALL do. Could there be a beneficial drug out there? I suppose so. But yeah, I'd do a ton of research before I'd take anything given what the last one did to me. 

Edited April 23 by [Na...]

[[Na...]]

4 hours ago, [[S...] said:

See here Central Sensitization

I'm not sure Kindling and Central Sensitization are the same thing. Maybe. I don't know but they are normally spoken of as two distinct things.

But it could be the benzo use and withdrawal may cause central sensitization. In any case, here's Wikipedia's definition of Nociplastic Pain - Central Sensitization.