AN UNUSUAL SITUATION AND IT IS ALL IN MY HEAD, OR IS IT????

[[Ga...]]

Hello fellow Long Haulers🍁🍂.   Another season is upon us and there are some of us buddies reporting an uptick in symptoms, possibly from the change from summer to fall.  Some of us have seasonal allergies which may not have been present pre- benzo, but now find ourselves sensitive to all sorts of things, including pollen, mold and mildew, foods and meds.  It has been suggested by my GP and allergist that my long lasting headaches are probably allergy related.  Nothing else has showed up in brain and neck scans, except for some mild herniated disk at C5 and C6.  My orthopedic doctor/surgeon wants to see me in two weeks to review my most recent X-rays to determine if the disks have bulged out further and may be pressing on a nerve.  I am at 42 months and have had headaches and head pressure the entire time.  I do get weeks of not having this pain, but it always circles back around.  My neurologist sees nothing alarming on all my scans, so that is reassuring.

As relates to my awful headaches and head pressure, I am curious and would love to get some feedback on this:  In 2018 I fell and hit my forehead and sustained a concussion, and the MRI taken right away showed a small lesion in the cranial region.  It was immediately removed by drilling down about six inches on the right front side of my head, and was found to be a benign tumor.  The surgeon said the headaches which followed were not a result of the surgery.  
 

Anyone have any thoughts on my unusual history?  I have been reassured that the concussion was a mild one and also would not be causing my long time head issues.

Hugs long haulers,

GG
 

Edited October 8, 2023 by [Ga...]
Added a comma in title

[[de...]]

Looking forward to seeing what Long Hauler members have to say.   There is a wealth of knowledge here!!!!!

[[Ga...]]

Thanks so much, Decatur.  You are doing a great job and helping many of us as we trudge through these last minutes, hours, weeks and months of recovery!

Healing Hugs,

GG

[[Be...]]

GG, I've had bad head pressure since I got off the pills.  

[[Em...]]

I also have chronic head pain, pressure, burning sensations in my brain, all very odd. Sometimes wonder if it’s brain inflammation from the drug damage.

How is your mould remediation going? We have got an excellent company coming out here to properly remove some mould downstairs using containment areas etc. We are having to throw out a fair bit of porous stuff too. I’ve accumulated way too much clutter and crap over the years so I’m glad to be having a bit of a cleanse! 

I have no idea at this point what is from what. It’s all very confusing!

[[Ga...]]

Hello Emerald Nature.  Well, we are two of the unlucky ones that have the awful head symptoms…..burning brain, headaches, and head pressure.  It has been my worst and longest symptom and if it would go away, I think I could call myself healed.  Some buddies have reported that their neurologist or other doctor said it is the nerve endings that are inflamed from the benzos, and eventually it will calm down and finally disappear.  It is not like a normal headache, and mine come and go.  I had almost two months totally free of them, and now they come and go in a very non-linear manner.  My head scans show a perfectly healthy brain so I know it is from my use of Valium for one year.   I only tapered for three and one half months and that is considered too rapid, which I only learned when I came onto BBs.  After being in BBs since September of 2020, it appears that head pain is quite common.  

How long were you on your benzo?  Have you had windows?  My windows are what keep me going, and I know that after the wave passes, my windows will be even better.  At 43 months maybe it will be my final window opening and not closing!!!!

 

I had the mold remediation company here last Monday and they did a great job.  They will come back this Tuesday and test the air to see if anything else needs to be done.  They will also install a new air humidifier in our crawlspace.  Whether the mold removal will help get rid of the head symptoms, it is too early to know.  It is good to know that our house is healthier to live in, and that is a good thing!

Take care,

GG

[[Ha...]]

I find it interesting that you have new allergies and sensitivity with the recent interest in histamine and MCAS that's been popping up in various threads. Is it something you've investigated at all @[Ga...]? 

[[Ga...]]

Hello Having a Mare.  Yes, I have considered checking out as to whether I have MCAS, and even mentioned it to my allergist several months ago.  I was somewhat taken aback when he basically said he doesn’t test for it and does not seem convinced it is a real thing.  My allergy test showed I am allergic to oak trees and one other thing which I can’t remember!   I also had food allergy tests done two years ago and I was found to have sensitivities to weird things like black pepper, pork, mustard, cantaloupe, cabbage, etc.  The allergy doctor said I was not allergic to those items, just showed a sensitivity reaction to them. After coming off the Valium I have found myself reacting to all sorts of things I never had been sensitive to before benzos.  I also had not been having sinus or jaw or ear issues, no problems with my gut, and definitely did not have headaches or head pressure.  Obviously my apple cart has been upset and I can only do my best by staying away from as many of the high histamine foods I can.  I get quite ill when I eat tomatoes, mushrooms and other shade growing foods, whereas before benzos I ate about everything with no issues at all.

How are you doing???

GG

[[Ha...]]

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

Hello Having a Mare.  Yes, I have considered checking out as to whether I have MCAS, and even mentioned it to my allergist several months ago.  I was somewhat taken aback when he basically said he doesn’t test for it and does not seem convinced it is a real thing.  My allergy test showed I am allergic to oak trees and one other thing which I can’t remember!   I also had food allergy tests done two years ago and I was found to have sensitivities to weird things like black pepper, pork, mustard, cantaloupe, cabbage, etc.  The allergy doctor said I was not allergic to those items, just showed a sensitivity reaction to them. After coming off the Valium I have found myself reacting to all sorts of things I never had been sensitive to before benzos.  I also had not been having sinus or jaw or ear issues, no problems with my gut, and definitely did not have headaches or head pressure.  Obviously my apple cart has been upset and I can only do my best by staying away from as many of the high histamine foods I can.  I get quite ill when I eat tomatoes, mushrooms and other shade growing foods, whereas before benzos I ate about everything with no issues at all.

How are you doing???

GG

I'm plodding on day to day. Had another cranialsacral session today which I find very helpful. Seemed to release a lot of my head tension today, so happy about that.

From what I've been reading, testing for MCAS seems to be pretty hit and miss. Long winded and not very reliable. Which is probably why your doctor doesn't test for it? Many seem to just discount anything new from what I can tell. I definitely have some histamine problems. Was really dizzy and sick yesterday, took an antihistamine and felt much better. Have you tried anything similar when having a bad time of it? I read somewhere that a test would be to eat sauerkraut, if your symptoms flair and something like vitamin C calms it you have issues. However this is normal people, not Benzo damaged. 

[[Ga...]]

I think some of us get so desperate for answers we end up confusing ourselves with way too much information.  Most buddies that have healed all come back around to saying that time and patience are the key ingredients.  When my head symptoms are beyond bad, I will take a Benadryl which does give some relief.  I have tried Claritin, Zyrtec and Allegra and they don’t give me any relief.   I try not to take the Benadryl too often, but on a day like today when my brain is on fire, I will take it and enjoy some relief.  I have eaten sauerkraut and like it, but I have interstitial cystitis and it causes my bladder to burn. Same thing with citrus fruits and chocolate…all bladder irritants.  Always something!!!!

Who does your cranial sacral treatments?  I am seeing my orthopedic doctor/surgeon next week, as he wants to check and make sure my bulging C5 and C6 disks have not pushed out further.  I have had three nasty falls over the summer, so he wants to make sure the disks are not pressing on a nerve and causing some or all of my head issues?

Take good care!

GG

Edited October 7, 2023 by [Ga...]
Misspelling

[[Ha...]]

Yeah very true @[Ga...], we're all looking for answers that maybe don't exist. Plus from what I can make out everyone is affected different.

There's a local woman that's a physiotherapist with the NHS in the UK. She's does cranialsacral and reiki from home. She's very good and I'm amazed what a difference it's made to me. Can definitely recommend trying 

[[Ga...]]

Thanks very much for the information on the cranial sacral treatment.  I will definitely check it out and see who does it in my area.  I have found relief with soft massage of my neck and shoulders, as I hold a lot of tension there, and which is most likely responsible for all the neck and head pain.  When I don’t have the head pain, I feel normal and happy.  Last week was really good and on Friday evening a week ago, my husband and I had dinner with our present doctor and my previous GP of forty plus years.  We spent three hours chatting over good sushi.  No talk of body aches and pains.  I felt good up until Tuesday of this week and must admit that I ate some candy corn on Monday, which is pure sugar and poison for my sensitive CNS!  No more candy for me for a very long time.

GG

[[Ga...]]

Last post of the night…..I have really jacked up my anxiety about the head pain, and as you and I are so similar in time frames, do you truly believe we will see a day when our head symptoms are gone for good????

GG

[[Be...]]

It's interesting that a neurologist said that the benzo's caused inflamed nerve endings which is causing the head pressure.  I believe that's the case with me.   I have no mold problems at all where I live and have never been allergic to anything.   I try not to take Benadryl since I read that it can cause dementia.  You can Google that and see.

[[Ha...]]

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

Last post of the night…..I have really jacked up my anxiety about the head pain, and as you and I are so similar in time frames, do you truly believe we will see a day when our head symptoms are gone for good????

GG

You said in your previous post that WHEN you don't have head pressure, you feel normal and happy (which I'm jealous of 😁). So the signs are good GG if you ask me. Gotta keep the faith xxx

Edited October 8, 2023 by [Ha...]

[[Em...]]

@[Ga...] yes it’s definitely a symptom. I’ve read many posts of people experiencing head pain, pressure, burning, searing, banging etc. The pain comes with an explosive element to it which I had never experienced before the drugs. 
 

I don’t get anything that I would call a window. Just times where the symptoms get dialled down a notch. I can’t find any rhyme or reason to it all. No pattern whatsoever. I spend days sat outside in my garden in the beautiful fresh air but it doesn’t make any difference to my symptoms! Certain foods make things much worse for me and emotional upset/stress. I have zero stress tolerance now and have to protect myself from certain energies. I have a family member that is causing me a lot of anxiety and stress at the moment over financial issues and I am having to distance myself from them because they are a very different kind of person to me. 
 

I am glad you had the remediation work done! We are having a fair bit done over the coming months but luckily I have family support otherwise I wouldn’t be able to do any of it. I think I’ve got a cold virus as I’m sneezing loads, sore throat and my nose won’t stop running 🤧 so going to log off here now and take my vitamin C and raw honey! Hoping for pain free heads for us all soon 

[[Ga...]]

Emerald Nature.  We seem to be “twinning” on several levels and it is so comforting to know that we are not alone in this ferocious battle we are in.  I just wrote a very long post in the Long Haulers group, so have a peek as it speaks to the stress we are dealing with….mold, family, etc.

Have the best day you can have🙏♥️!

GG

[[Ga...]]

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

You said in your previous post that WHEN you don't have head pressure, you feel normal and happy (which I'm jealous of 😁). So the signs are good GG if you ask me. Gotta keep the faith xxx

Good Morning to you!  Hope this morning finds you feeling the best you can!  Thanks for your reply last night…..I needed to hear your words.  This morning is a bit better, so I am pleased that some improvement is noted.

We will both keep the faith as we know our day of full recovery is waiting in the wings🙏😜

GG