Jennifer Brea: I have craniocervical and atlantoaxial instability

[Gingergrrl]

I would like to say thanks to @jeff_w and @JenB for telling their stories and for spreading the word about CCI and hypermobility. We have a WhatsApp group of patients and these subjects have been discussed recently. It turns out that one of the patients in the group has been found to have hipermobility and neck symptoms, along with headache. She improved a lot with a neck collar and now she will consult a specialist

This is such great news @jpcv and best wishes to your friend from your WhatsApp group and hoping she continues to improve.

 

[Wayne]

It makes me wonder about how neuroinflammation, perhaps in the brain stem, may explain some of the dysautonomia many ME/CFS patients experience.

I've long believed an injury to my brain stem as a teenager resulted in the beginning of my progression into ME/CFS, including my dysautonomia/OI. Since I assumed chronic neuroinflammation of my brainstem was something I was dealing with, I began applying a combination of DMSO and Magnesium Oil to my neck to reduce that inflammation (and pain & stiffness). I noticed after I started doing this that my dysautonomia/OI improved fairly significantly. -- POTS Inexplicably Improves After Topical DMSO Applications

It seems my MCAS was neurologically-based. I no longer react to dust, cats, mold, etc.

Wow!

 

[Wayne]

I am going to be scheduling an MRI

Hi @Gingergrrl,

As I cautionary note, and in case you're not aware, MRIs can be very loud. I've never had one, but have read of numerous instances on a tinnitus forum that having an MRI made their tinnitus dramatically worse. I've always been sensitive to sound, and since I developed tinnitus in February, am extra careful about not taking unnecessary risks.

I've heard that GE makes an MRI machine that is much quieter. But if you find yourself faced with going into a loud one, be sure to protect your ears with ear muffs or really good ear plugs. Some MRIs don't have enough room for ear muffs. And just to mention, I've discovered there's a lot of overlap between ME/CFS and tinnitus/hyperacusis.

 

[Wayne]

Holy cow @jeff_w! (I grew up in rural Wisconsin). I just read your CCI story on your website for the first time and what a compelling story it is. And what an extraordinary journey you've been on!

You've written not only a compelling story, but such an important one as well (in many respects). Thought I'd post a link to it again for others who may have not gotten to it yet. The Mechanical Basis of ME/CFS -- Good job!

P.S. I also loved your last sentence: -- "My story isn't over yet. More to come!"
I look forward to reading your updates.

 

[jeff_w]

Hi @Wayne ,

Holy cow @jeff_w! (I grew up in rural Wisconsin). I just read your CCI story on your website for the first time and what a compelling story it is. And what an extraordinary journey you've been on!

You've written not only a compelling story, but such an important one as well (in many respects). Thought I'd post a link to it again for others who may have not gotten to it yet. The Mechanical Basis of ME/CFS -- Good job!

Thank you!

P.S. I also loved your last sentence: -- "My story isn't over yet. More to come!"
I look forward to reading your updates.

Ah! I just updated my website with a newsletter option, so you (and anyone else interested!) can sign up to be emailed when I update.

 

[Gingergrrl]

As I cautionary note, and in case you're not aware, MRIs can be very loud. I've never had one, but have read of numerous instances on a tinnitus forum that having an MRI made their tinnitus dramatically worse... I've heard that GE makes an MRI machine that is much quieter. But if you find yourself faced with going into a loud one, be sure to protect your ears with ear muffs or really good ear plugs. Some MRIs don't have enough room for ear muffs. And just to mention, I've discovered there's a lot of overlap between ME/CFS and tinnitus/hyperacusis.

Thank you @Wayne for thinking of me and I've actually had two MRI's in 2010 (one of my brain and spinal cord and one of my arm). The first one (of my arm) was incredibly loud and I was not prepared and the imaging center did not have the proper ear plugs or head phones and it was horrible. But several months later when I had the second MRI (in the hospital vs. an imaging center), I not only brought my own ear plugs, they provided good ones PLUS very good headphones. The second MRI was much softer b/c of this! I will ask the imaging center in advance if they provide ear plugs and headphones and if not, I will be prepared and bring my own. I have never had tinnitus or hyperacusis.

Ah! I just updated my website with a newsletter option, so you (and anyone else interested!) can sign up to be emailed when I update.

This is a great idea!

 

[Gingergrrl]

@Wayne I called the imaging center today where I will have the MRI (in December) and they confirmed that they provide both ear plugs and headphones for the MRI. I am now waiting for my doctor to send them the official order so they can clear it with my insurance (which they said will not be a problem and does not require a Prior Auth).

My biggest fear was the contrast dye (which I am allergic to) but they confirmed that 100% they do not use contrast dye for an MRI of your neck/cervical spine unless there was some special reason (like prior surgeries or scarring which does not pertain to me).

 

[Wayne]

My biggest fear was the contrast dye

@Gingergrrl,

I'm happy to hear you're not going to be using the contrast dye. -- You might find this interesting:

 

[Gingergrrl]

I'm happy to hear you're not going to be using the contrast dye. -- You might find this interesting:

Thanks and it was an interesting video. I am definitely not going to be having the contrast dye and my MCAS doctor said that I should never have Gadolinium or an iodine based contrast dye for as long as I live. He was crystal clear about it vs. on everything else he either says that I am now okay to test something at a toothpick dose or that I am flat out okay to have it now (minus things that I have been allergic to life-long of course). It would have to be a matter of life or death for me to attempt a contrast dye and I would require IV Benadryl and other pre-meds.

 

[Wayne]

I would require IV Benadryl and other pre-meds.

Here I go again... If you're ever in a position where you're looking at taking those kinds of medications, please do your homework on them first. Benadryl is actually ototoxic (toxic to ears), though most people can get away with taking it occasionally. Others however developed tinnitus from just a single dose of it.

In all my research on ME/CFS and tinnitus, I'm continually amazed at how much overlap there is between them. -- I may start a thread at some point on this topic, and give a list of fairly everyday things that can trigger tinnitus in susceptibe people (I'm guessing most PR members), like ultrasonic teeth cleaning, ear wax suctioning, using power tools, etc.

 

[Gingergrrl]

@Wayne, I don't have tinnitus and there are situations without IV Benadryl as a pre-med, I am at risk of anaphylaxis and death. There are common things for me that would be extremely dangerous (that would cause zero harm to other people) and of course vice versa.

 

[Artemisia]

Jen, it's very interesting to me that these symptoms started after the thyroidectomy. Do you think that this was because of the direct physical trauma of surgery, or do you think that there's a relationship between this kind of structural problem and metabolism?

The reason I ask is a lot of my muscle pain symptoms improve temporarily with thyroid treatment. I wasn't a classic hypothyroid case for most of my illness but tried it despite normal TSH levels, and then got retested around the same time I started thyroid treatment and realized that my TSH levels had raised to "officially hypothyroid" levels.

A lot of people here have had some symptomatic relief with thyroid treatment but I wonder if it is at all connected to collagen or structural issues...

debored13, I think I've seen you in Ray Peat forum. I also follow Peat. Why do you think your TSH level raised once you started taking thyroid medication (either from Peat's or your own perspective)?

Have you had any problems tolerating thyroid? I get anxiety reactions from most thyroid meds I've tried (t3 only or combo). Thanks!

 

[frozenborderline]

debored13, I think I've seen you in Ray Peat forum. I also follow Peat. Why do you think your TSH level raised once you started taking thyroid medication (either from Peat's or your own perspective)?

Have you had any problems tolerating thyroid? I get anxiety reactions from most thyroid meds I've tried (t3 only or combo). Thanks!

TSH levels didnt necessarily increase after treatment. I unfortunately didnt get a test done right before i started treatment to get a baseline, but in february they were "normal" and i started treatment in september without getting a baseline, based on symptoms, and a week after they were abnormal. i doubt it correlated with starting thyroid, more likely that it had just increased in general , along with symptom severity, to the extent where it was that bad at the time

 

[frozenborderline]

I've long believed an injury to my brain stem as a teenager resulted in the beginning of my progression into ME/CFS, including my dysautonomia/OI. Since I assumed chronic neuroinflammation of my brainstem was something I was dealing with, I began applying a combination of DMSO and Magnesium Oil to my neck to reduce that inflammation (and pain & stiffness). I noticed after I started doing this that my dysautonomia/OI improved fairly significantly. -- POTS Inexplicably Improves After Topical DMSO Applications

Wow!

curious about DMSO... there has been a lot of controversy over how safe/healthy it is in certain circles--i know a supplement manufacturer that stopped using it b/c of customer concern and reactions, but insists it has possible health benefits

 

[frozenborderline]

are

curious about DMSO... there has been a lot of controversy over how safe/healthy it is in certain circles--i know a supplement manufacturer that stopped using it b/c of customer concern and reactions, but insists it has possible health benefits

are there other ways to use magnesium oil that dont use dmso as a solvent?

 

[sb4]

Whilst some have had success with DMSO, I get a wierd sort of spaced out, very off feeling, along with symptom increases with DMSO and DMSO products so it's not for me.

 

[xrayspex]

Here I go again... If you're ever in a position where you're looking at taking those kinds of medications, please do your homework on them first. Benadryl is actually ototoxic (toxic to ears), though most people can get away with taking it occasionally. Others however developed tinnitus from just a single dose of it.

In all my research on ME/CFS and tinnitus, I'm continually amazed at how much overlap there is between them. -- I may start a thread at some point on this topic, and give a list of fairly everyday things that can trigger tinnitus in susceptibe people (I'm guessing most PR members), like ultrasonic teeth cleaning, ear wax suctioning, using power tools, etc.

that is interesting Wayne! about 8 years I had been taking a fraction of a dose of benadryl to help with insomnia for a couple years and I started to notice tinnitus--I mentioned to my PCP that I suspected the benadryl was inducing that and he acted like that was ridiculous

I decided to stop taking it and in retrospect feel like it caused some brain damage. I just wanted to sleep at the time, fortunately that has improved overall, but I hated the effects of that med...all it would take was a crumb of smallest dose to put me out too.

 

[Neunistiva]

As I cautionary note, and in case you're not aware, MRIs can be very loud.

and they vibrate. I got ear plugs and ear muffs over them, and still the noise and vibrations badly triggered my dysautonomia. Absolutely horrible experience and that was before I was severe.

On the other hand, I had contrast dye both for MRI and CT (which I believe are different compounds) and no reaction to either. I guess I don't have MCAS.

 

[mrquasar]

@Neunistiva How are you doing these days? Do you remain bedridden?

 

[Wayne]

are there other ways to use magnesium oil that dont use dmso as a solvent?

Hi @debored13,

Yeah, you can just apply the magnesium oil straight to the skin w/o the DMSO. To make, just fill any container half full with "magnesium flakes", then fill to the top with filtered water. Takes about a day to fully dissolve. It can irritate the skin a bit, so you can use aloe vera juice instead of water, as aloe is quite soothing to the skin. You can also use a weaker dilution with water, such as filling a container w/ 1/3 flakes instead of 1/2.