Head pressure

[[Jd...]]

When you ask your dr for a full iron panel.   Ask for specifically the ones I listed or your moron dr will forget one. You need.   Serum iron.  Tibc. Iron saturation and ferretin.    If he wants to do transferrin and any others so be it.  But you NEED to know those top 4 

[[Sc...]]

Will ask. My head is so tight this is torture damn. These drugs did a number on me. I hope its something as simple as low iron so it can be fixed.

Edited November 27, 2023 by [Sc...]

[[Jd...]]

Trust me I know what you mean.  I have no idea how youve held on for 10 years it’s been 2 for me and it’s driven me crazy.   Just because I believe it’s iron that doesn’t mean I don’t think it’s not benzo fault.  I do believe the wd messes up our intestines and also makes us way way way more sensitive to things that we before hand weren’t as sensitive to.   As example I’ve scoured through my blood work for years and seen that I’ve probably always had an underlying iron issue for a majority of my life but I didn’t notice it.  I think the wd made me way more sensitive.  Before benzos my nervous system didn’t get so inflamed and angry with the lack of iron in her now it does.  You likely are going to fall into the same boat.  Another person with iron deficiency will be able to get their ferretin up to 70 and be fine you’ll most likely have to raise yours to 150 and hold it there for quite a while to see relief.  This will take a LOT of patience  and dedication as iron pills make you feel like crap.   If you live in the US quest can do a ferretin serum iron tibc and iron sat for $38 under “Jason health” I just pay for mine instead of asking my incompetent drs 

Edited November 27, 2023 by [Jd...]

[[Sc...]]

I forgot to mentioned i had B12 and Ferritin done all normal. Dont know why some CBC was out of range. Will tell doc to do full panel.

Edited November 27, 2023 by [Sc...]

[[Jd...]]

The reason why some of the cbc was out of range is 99.9% chance iron deficiency.   Mcv mch mchc are measurements of hemaglobin and volume.  Hemoglobin needs iron.   If you have access / can look at your blood work online.  Look also at your rdw it’s another clue. Also mpv.  Many general physicians don’t look for subtle clues like mch mcv mpv rdw.  They only look at hemaglobin white blood cell count maybe red blood cell count and hematocrit.   That’s all they look at. But there are a LOT of other things on there that they deem are “not that important”. But it’s a fallacy. They are subtle hints that there are other issues that need investigated. the mch and mcv wouldn’t be on a cbc if it wasn’t important.  It’s cluing you in that there is something else going on. the sad reality is b12 is a common nutritional deficiency but it’s not the most common. Iron is.  Physicians have now FINALLY grasped the idea that b12 and folate (which is b9) can have some nasty side effects if they are off but they STILL are years behind in being up to date on iron. 
And also as far as what the medical community says are “ok lab values” are far from being good.   Vitamin d level of a 32 your dr will say is good but it’s just barely above the threshold of when it’s considered pathology/disease but in reality a GOOD vitamin d level is 80ish.  A 40 is low and a 25 is extremely low

b12 don’t let your dr tell you that your 450 is good.  That is low. It’s just not “extemely low”.  800-1000 is GOOD.  Etc etc    

these drs are no more well educated on proper nutrition than they are on benzos.    We often give our drs more credit than they are worth by assuming they are smart people they just don’t understand benzos.  They don’t understand vitamin and mineral imbalances and what the side effects are either is my point 

Do you have online access to your cbc ?

Edited November 28, 2023 by [Jd...]

[[Jd...]]

I just re read your last thing you said.   You said b12 and ferretin.    Was it b12 and FOLATE?  Or ferretin.  Ferretin is one of the main 4 iron studies.    Folate is b9 which drs often tag along with b12 

[[Jd...]]

Scooby do any of these symptoms seem like things you’re dealing with ?

[[Sc...]]

B12 and Ferritin. And i have many of the symptoms you mentioned. I agree with you these Iron and B vitamin tests are important for neurological function and ones that are off can cause neurological symptoms. I also agree the family doctors dont know shit about these things.

I feel horrible with my squeezing head intense pressure feels like tight muscle all over a sustained grip that never releases, its absolute torture. Have this 24/7 everyday, heat doesnt work, neither does cold, stretching or massages. Was more tolerable years ago now it got much worse and i dont understand why.

[[Jd...]]

My opinion Scooby is its iron.  We won’t know for sure until you get the full iron panel consisting of those 4 things.   Serum iron . Tibc. Iron saturation . And ferretin.    but in my opinion it most likely is that.  
while my symtoms haven’t been around as long as yours it’s the exact same thing. It never ever ever fully goes away. Mine has been for 2+ years straight. Sometimes it’s less intense and others it’s crushing pain.  Being that now I’m more aware of what is causing mine I’m simply relating that to you.   my pain and pressure was bad until I discovered the iron issue.   I began supplementing with a brand I bought in a grocery store.  It absolutely tore my stomach up.  Felt like vomiting for 2 hours after each dose.  I hated taking it but with each month I felt my head symptoms slightly improving ever so slowly.  The dizziness was easing up.  Restless leg was gone.  Sleep was improving. So it was working but omg did I hate the 1-2 hours of nausea once in the morning and another time at noon when I took my pills.   Well I had read about a brand called “sideral” which isn’t available in the US so I bought some off eBay shipped from Greece and Lithuanian for $100 a month supply.  I had read there was zero stomach issue and it worked way better and faster so I bought some.   
yeah it didn’t hurt my stomach but my head symptoms slowly got worse.  I just thought to myself “must be a bad wave” nope the sideral didn’t work for me and my iron levels were dropping.  I didn’t test my blood for 60 days and my ferretin dropped by 50% in that time frame.     We won’t know for sure until the blood work is back but I think your symptoms are worse prob because your level is down a little more than usual.     I am 99.999% confident your issues are an iron problem.  
But keep in mind.  While you will have your solution it is not an easy solution.  I am 6 months in and still no where close to my target range of a ferretin of 100-150.  It took me 4 months to bring my ferretin up from an 8 to a 19.9. and after two months of switching brands I’m back to a 9.  For this pain to go away the ferretin must be 100 maybe even 150. And held there.  The claim is the longer you have had deficiencies the longer you will have to keep this high level of iron.  You may have to keep that high level for a year or two being it’s been 10 years.   So your pain may not go completely away quickly. But I do think it will improve (slowly) my symptoms improved and my pain was down by 50% just from going from an 8 to a 19.9.  So I had lots of pain relief just by increasing by 10 and still had a lot farther to go to reach 100.   
If you are interested I’d be glad to help you once your blood is back. I hate to see others suffer from this and while I don’t know what causes the other peoples symptoms or what can be done about it.   I’m fairly sure I do know what is causing the head pressure one and know what can be done about it.   

[[Jd...]]

What were your b12 numbers and ferretin numbers ?

[[Jd...]]

A ferretin by itself can be misleading as ferretin is a lab that measure how much iron you have banked in storage.   But weirdly ferretin also goes up if you have inflammation.  So a ferretin by itself if as example was a 95 your dr may say wow that’s amazing. When if only they would have done the rest of your iron panel they would have seen your iron saturation was a 7.   Therefore the ferretin is only high because you have inflammation.   So ferretin taken in isolation is a useless lab IF it’s a high number or a good number.  It’s only useful if low 

but still curious.  What are your two lab values.  And not sure what country you live in.  Different countries have different metrics to measure so you’ll have to also put.   If it’s Ng/ml or whatever standard of measurement they use 

Edited November 28, 2023 by [Jd...]

[[Sc...]]

B12 pmol/L and Ferritin 52ug/L

 

 

 

[[Jd...]]

52 isn’ terrible on the ferretin although like I said earlier really need to see what the other labs are also.  100 ferretin is more ideal.   Ferretin can be elevated in inflammation also so the lab value itself can be misleading.  
what was the b12 again you didn’t put a value 

[[Sc...]]

On 29/11/2023 at 04:30, [[J...] said:

52 isn’ terrible on the ferretin although like I said earlier really need to see what the other labs are also.  100 ferretin is more ideal.   Ferretin can be elevated in inflammation also so the lab value itself can be misleading.  
what was the b12 again you didn’t put a value 

B12 is

160

153-655

pmol/L

 

[[Jd...]]

Ok so you must live in Europe somewhere.  I had to look up how to convert to a measurement that I know.  I took a screen shot and what I can tell you is my patients that test as low as you are in b12 my doctors don’t even bother with pills they begin with injections at your level.   I’m not sure where you live but I do know that the US and England have very low levels of b12 and before they will admit there is a problem.   I know it’s difficult to take a persons word for it just online.  I think you SHOULD be skeptical of what you read online so I think you should join the fb group b12 deficiency (I’m also on that board) and ask them if your level is too low.   Basically what I’m saying is i know the lab result says you are within range but it’s just our crappy counties letting us be more deficient than what is safe before they say there is a problem.   I will screen shot in the next post what MY b12 level is and continue ….

[[Jd...]]

As a reference just so you know how low yours is.  My level is 389.  Which when converted is 287pmol/l and I am on weekly injections of b12 now.     So yeah.  Take this for what it’s worth but the doctors I work with won’t even give the patients oral b12 if their level is under a 250 they immediately go to injections.  My levels are almost twice yours and I’m on weekly hydroxycobalmin 1mg injections 

the OPTIMAL range for b12 is around 900 or when converted to your countries measurements 600-700 pmol/l

if interested I can give you the link to where I get mine from (I order mine from Germany.  For $1 approx per week ).  But gotta make sure you’re ok with weekly injections and as with ANY advice online double check to make sure what I’m saying is accurate.  Join the fb forum that has many drs and healthcare workers on there I believe the administrator is a dr of some sort and make sure I’m being honest with you.  I mean.  I know I’m not lying but I want you to feel comfortable with those ideas.   Lemme say this politically correct according to the rules on this forum

if I was you I would begin injecting 1000mcg per week of hydroxycoboamin from 

www.apohealth.de

thats just what I would do    Not advising you to do that though  wink wink 

Edited December 2, 2023 by [Jd...]

[[Jd...]]

This is the b12 I order from that website and I inject 1 amp into an alternating shoulder once per week.  And my level is almost double yours.  I’m not a glutton for punishment nor enjoy needles anymore than the next person just know that I want my levels up in the optimal range if I ever hope for this head pressure and pain to subside.     B12 s sibling is b9 aka folate and the two often go hand in hand though so if you decide to supplement b12 gotta keep an eye on folate 

Edited December 2, 2023 by [Jd...]

[[Jd...]]

A simple google search of “what is the optimal range for b12” will give you dozens or maybe hundreds of links to things that claim the reference range we are being given is too low and should be raised 

[[Be...]]

I'll have to take my B12 tomorrow.  I haven't take it in a long time.

[[Jd...]]

On a side note if you are currently taking b12 the lab test is skewed for approx 4 months is what I’m being told.   The b12 hang out in the blood giving a falsely elevated level.  As example my level was 389. So I began injecting 1000mcg a week.  Or even if I took pills a day. Now my level may read way high but it’s just falsely elevated.  Supposedly you have to be off ALL b12 supplements for 4 months to know your accurate b12 levels.  I’m just gonna inject once a week for 3 months then switch to monthly and do that for a year.   B12 (unlike b6) can’t overdose on 

[[Na...]]

Guys -

Just want to jump in with a comment. I have no doubt that @[Jd...] has nothing but the best of intentions. But I feel like I need to remind everyone that he's not a doctor, and even if he were I haven't seen a doctor that can definitely say what causes protracted issues from benzo usage and how to treat them. So understand that when he makes a statement like "your problems are caused by low ferritin" or "low B12", there's really no one that can say that with knowledge and authority. It is his theory. It would be wonderful if that theory were right, but of course we in the long hauler camp have seem a lot of theories come and go over the years, and so far none of them have really panned out. So proceed with caution. Obviously everyone is free to make up their own minds and pursue their own treatments.

I want to speak directly about his suggestion of B12 injections. This is something that I have direct knowledge of as there was a board member of the Benzo Information Coalition that actually got a paper published regarding one theory of what causes long term benzo usage problem. It was a completely different theory than JDoe's but B12 was one of the potential remedies.

So I ran out and got myself some injectable B12. I thought it was helping at first but in the long run it was probably placebo because at the end of the day it did nothing.

However, I had a conversation with a person outside of Benzo Buddies that was also looking at B12 injections and I related my personal experience that I had tried them and while they hadn't helped me they hadn't hurt. So they also went down the path of B12.

Unfortunately for them, after the second or third injection they were thrown into a terrible wave. Horrible insomnia and other issues.

When I discuss things I've tried to treat myself I always try to remember to say that whatever I tried may do nothing for you, or it may actually make you worse. So keep that in mind when you treating yourself as your own lab rat. There are no guarantees one way or the other in any of this.

Also, there is the issue that in most countries (but not all) injectable B12 is a by prescription "drug". That is certainly true in the US and much of Europe. So unless you go to a doctor to get a script or otherwise have access to "legitimate" injectable B12 you will have to import it from overseas, which can be a somewhat sketchy proposition. This is the sort of thing that makes site management very nervous being discussed on the board, and rightly so.

[[Jd...]]

I never claim to be a dr.   I am a nurse. I am a nurse I am a nurse.  
i 

am 

a

Nurse (they are not the same )

everyone is an individual and this idea that ANY advice given should be stopped because what if.     If someone has a headache and you tell them to take two Tylenol.   There is a chance they may die from it.  Rather low but it’s out there. 
nathan you took b12 injection and you felt a bad reaction from it.   It’s a shame you didn’t have someone to help you and say.   Well what kind of b12 was it.  Was it cyanocobalmin was it methylcobalmin or was it hydroxycobalmin.   If only there was a dr or even a 🤔 nurse who could explain that there are several types of vitamin b12 injections.   Some of which are well known to cause increase in anxiety.   You probably don’t know what kind you took.  You probably don’t know your genetic mutation status. Are you mthfr positive.  I bet you don’t really know those details and yes do they do matter. But as with Anything the body does work in mysterious ways. Someone can be vitamin d deficient and you tell them to go maybe get some extra sunlight and they either over do it and get burnt and skin cancer or are the oddball that is allergic to the sun.  That is a thing ya know.    The reality is THIS BOARD IS ABOUT HARD FROM A MEDICINE.  It’s rooted in healthcare advice.  
we advise people to not follow their drs orders and taper by a deceased drs manual - isn’t that dispensing ?

 Who on here has the credentials behind their name to say “do not taper as fast as your psychologist says.  Follow MY advice”.  No one does 

My advise is about getting blood work.  And educating WHAT each “symbol” means.  Simply knowing what a rdw is does not mean I’m pretending to be a dr.   Nurses are expected to know this.  Maybe not lpn but register nurses like I have been for 17 years.  This is expected knowledge 

what’s weird is I SPECIFICALLY told that person to don’t believe me.  Double check what I’m saying.  Make sure I’m accurate.  I mean I know for a fact I’m right but that’s not the point the person I’m speaking to SHOULD NOT be taking my advice nor anyone’s advice as if it’s written in stone.   
 

I personally feel you just feel intimidated when someone knows more about a subject than you.  I’m not sure why you’re struggling with this so hard.   This is my job.  I’m expected to know more about this than you.    If you were a mechanic I would expect you know more than me about even my car that I own

This advice is about vitamin b12.   Literally over the counter vitamin it’s like giving Tylenol advice.   I don’t care how long you look you can’t find me a death caused by vitamin b12 overdose but Tylenol you can.   I have heard of people dying from drinking too much WATER because it depleted their potassium but never have I ever heard of a b12 overdose.   Most 8 year olds can walk into a store and buy b12 without the person batting an eye 

it’s a shame that you would have people suffer and take advice from someone in healthcare just because the things I speak about are above your education level.   
 

Is this board about helping others or just a place to complain?   I may have some symptoms left but I’m working again. I work full time +. I go on vacations I’m not 100 healed however I have for the most part returned back to a normal life.     I come here to help others achieve that goal as well.    It appears as though you are more concerned with saving face than saving people 

[[Jd...]]

And ok I can see the point about buying from Germany without a script is sketchy.   Agreed.    However in the us.  Hydroxycobalmin injectible is hard to find.    Hydroxycobalmin is the one that’s the least CHANCE OF A reaction notice not saying zero chance. But hydroxycobalmin yes I order from a legit pharmacy from a country where it is legal and have it shipped to me rather than take cyanocobalmin or methylcobalmin. To avoid reactions.  But I should have made that more clear.  Your dr will likely say “there’s no difference “ and in my OPINION that is not true.  I do feel hudroxy is safer and well tolerated.  In my opinion 

[[Na...]]

Just to be clear - my B12 was the same as yours - hydroxycobalamin. Different brand same breakable glass vials.

And it didn't hurt me at all.

But it did cause someone I know a very severe setback. To the point where I regretted telling him that I had tried it and it had done me no harm. Which is what I'm trying to avoid here. I just want people to understand that any of these treatments might cause a setback for any given member. Some of us are so fragile that anything may perturb us into a setback.

[[Jd...]]

And I never ever said just everyone go taking b12.   Nor iron.    It depends on your blood work.  B12 if taking the right kind doubtful it can hurt you.  Iron in excess can kill you though.  So if you read into what I said as everyone protracted take iron.  You read incorrectly.     I make no claims about ALL of the symptoms of protracted but yes I do feel I notice something with HEAD PRESSURE    Not the other 87 symptoms.  JUST THAT ONE.  And also never have I said “it you have that symptom go get a handful or xyz and swallow it now” i inquire about blood work because that does matter