Phantosmia

[Snowflake]

Good day Ch Family,

I hope you all are coping..

Just wanted to know if anyone here has experienced or is experiencing phantosmia.

It means that sometimes now and then you get a smell from within. A smell that only you can smell and it's in a way "scary". I always refer to it as " the smell of death" cos it really scares me each time it happens. 

it is intermittent. 

If I had to describe it, it would be like the smell of burnt plastic mixed with harsh chemicals that actually has a frightening effect. Even if you try to smell the strongest of perfumes or menthol rubs, you can't since this smell dominates it. 

And no one else can smell it. It feels like it is coming from within myself even exhaling through the nose senses it. 

 

This is the second time that this is happening to me and wanted to know if it has anything to do with our treatments or condition. I'm on the D3 regimen for a long while now also .

Please let me know as this is wierd and terrifying all at once.

I hope non of my organs are failing or if it also has anything to do with the fact that I had both my hips replaced sometime ago.

scrambling for answers

TIA

 

[jon019]

...hi Snowflake....good to hear from you but sorry it's because the beast is screwing with you...

...i don't know how common this is with CH, but have seen it mentioned several times, mostly as a side note in research and medical articles/papers....and on occasion in discussion by clusterheads.....you aint any more cracked than the rest of us! it's a thing, but apparently moreso with migraineurs.  not reported to be harmful beyond annoyance in anything i've read...

...i made my living with my nose so it was more intriguing than alarming for me...tho i must admit it pissed me off and i used to hunt down the source until i finally figured out "And no one else can smell it. It feels like it is coming from within myself even exhaling through the nose senses it."  thankfully transient, so never interfered with the job. multiple variations but burnt plastic, manure, and sewage were the most common and yuckiest. it IS the weirdest damn thing.....

...never could associate with any particular med and not recalling at what point in cycle it was prevalent...or even when ECH, if only during cycle...

[Snowflake]

13 minutes ago, jon019 said:

...hi Snowflake....good to hear from you but sorry it's because the beast is screwing with you...

...i don't know how common this is with CH, but have seen it mentioned several times, mostly as a side note in research and medical articles/papers....and on occasion in discussion by clusterheads.....you aint any more cracked than the rest of us! it's a thing, but apparently moreso with migraineurs.  not reported to be harmful beyond annoyance in anything i've read...

...i made my living with my nose so it was more intriguing than alarming for me...tho i must admit it pissed me off and i used to hunt down the source until i finally figured out "And no one else can smell it. It feels like it is coming from within myself even exhaling through the nose senses it."  thankfully transient, so never interfered with the job. multiple variations but burnt plastic, manure, and sewage were the most common and yuckiest. it IS the weirdest damn thing.....

...never could associate with any particular med and not recalling at what point in cycle it was prevalent...or even when ECH, if only during cycle...

Hey @jon019

Good to hear from you too. I hope you are ok.

I am out of cycle and your response answers my question especially knowing I'm not losing organs lol. But yeah the smell is on and off and is really for me, scary. 

I also tried some research on it and how ironic that it is only a few people that are affected and is quite rare just like Ch. 

I must stress that it is a "ghostly" smell. 

otherwise, I am good. The reloading worked wonders and I was snatched back to life as @xxx reloading schedule is extremely effective. Been pain free for few months now. Sticking to maintaining and just trying to tapper off antidepressants and pain killers which I abused by force over the last good couple of years. It is difficult but I am trying really hard. Just find myself relapsing just as I am nearing my goal because of incidents that occur like my mum got sick and ended up with shingles inside her ear which is rare but I can imagine the pain at her age, then my dad had who also has both his hips replaced as well as both his knees, ended up not long ago in hospital to have his ankle bone scraped down however the wound is taking forever to heal since it's on a movable part, no my brother came down yesterday from Johannesburg to see a specialist to remove a growth on the side of his face which is rather large and near the ear. He goes in on Monday to be admitted to hospital and Tuesday is the rather intricate operation as they need to bring in ENT specialists as well to see which angle to approach this thing from.

Then all our vehicles are troubling at once. So all this stress is just making me grab more meds to cope since I don't drink alcohol so the go to thing for me are pills unfortunately.

sorry for the long read and take care buddy

[xxx]

Quick Note to All.

Disclaimer:  The following is for information and educational purposes only.  See your PCP before starting vitamin D3 therapy and obtain lab assays of your serum 25(OH)D3, calcium and PTH.  If your 25(OH)D3 serum concentration is below 30 ng/mL (70 nmol/L) you really need to start vitamin D3 therapy

The anti-Inflammatory Regimen is very beneficial to all of us even if we don't have CH or migraines. 

Rationale:  Vitamin D3 at the suggested doses boosts the innate and adaptive immune system and that is HUGE as our immune systems keep us healthy by fighting off disease, inflammation associated with trauma from injuries and surgery as well as other autoimmune disorders. 

For example, the surgery required for knee or hip replacement will cause serum 25(OH)D3 to drop by 70% in less than a week following surgery.   That opens the door to longer more painful recovery times.

The really impressive thing about taking vitamin D3 a few weeks before planned surgery is the surgical wounds heal very rapidly with minimal risk of infection.  Moreover, sufficient vitamin D3 lowers the need for opiates to control the pain from surgical wounds.  If it's an acute injury, start vitamin D3 therapy ASAP at a minimum of 50,000 IU/day then taper to 10,000 IU/day with the liquid softgel vitamin D3 formulation or 50,000 IU/week with the Bio-Tech D3-50.

Vitamin D3 is also a fantastic treatment for Shingles  (Varicella-Zoster virus (VCV) infection - a.k.a., Zoster).  50,000 IU also stopped a progressing VCV infection (I was asymptomatic) in a matter of hours and 100,000 IU of vitamin D3 cleared the infection completely in less than two days.  

The standard vitamin D3 dose with the liquid softgel vitamin D3 formulation is 10,000 IU/day or your can compute it at 125 IU/Kg (57 IU/lb) body weight/day or multiply this amount by seven and take that once a week.  This dosing schema is good for 6 lb infants up to the Big & Tall adults.  If you're burning the Bio-Tech D3-50 illustrated in the photo above like me, one 50,000 IU capsule a week is a great dose.  This is because the Bio-Tech D3-50 has a much higher bioequivalence than the same dose of the liquid softgel vitamin D3 formulations.

Here's the real biggie...  This vitamin D3 regimen and treatment protocol is also effective in preventing and treating COVID-19.  Watch the following Youtube video of Dr. Campbell as he explains results from the largest study of its kind treating COVID-19 with vitamin D3.  It was found to be safe and effective.

A little evolutionary perspective... 

Our need for vitamin D3 is the direct result of over a billion years of DNA evolution, 420 million years of vertebrate evolution and 200 million years of mammalian evolution where genetic instructions in the human genome evolved to codify our need for vitamin D3 and how to produce it when the 7-dehydrocholesterol in our skin is exposed to the UV-B in direct sunlight…  Got that?  We need cholesterol in order to produce cutaneous vitamin D3…  Taking statins screws the pooch… but that’s another story.

Vitamin D3 is so important to good health and human physiology, our skin can generate as much as 15,000 IU of cutaneous vitamin D3 in as little as 10 minutes if exposed to the UV-B in direct summer sunlight at mid day clad in a bathing suit without sunblock.  These figures are for people with fair skin color.  If our skin is darker, we need to double the UV-B exposure time.

Unfortunately most of us haven’t been out in the sun that since we were kids…  Working for a living, air conditioning and the skin cancer mafia have seen to that…  Living in a sun belt does not guaranty adequate cutaneous vitamin D3 as exposed face, arms and legs are not sufficient to produce the amount of vitamin D3 needed for a healthy life.  On top of that, the amount of vitamin D added to milk and orange juice is grossly insufficient to elevate serum 25(OH)D.   

Accordingly… unless we’re already supplementing with at least 5,000 IU/day vitamin D3…  most of us are vitamin D3 deficient for non-skeletal pathologies…  a 25(OH)D serum concentration less than 50 ng/mL, (125 nmol/L). 

You can read all about the supplements and suggested doses, drug interactions and contraindications for this regimen with an Internet search on “anti-inflammatory vitamin D3 regimen.”

Take care, I welcome comments...

V/R, Batch