Severe neurological symptoms - question

[Bergkamp]

Since a few days ago I have a very bad flare of neurological symptoms - extreme light sensitivity (I can barely open my eyes), very dry eyes, bad sound sensitivity, weird 'zaps' in my head, tremors, pressure in my forehead, loud ringing in my ears, buzzing, etc. Basically all kinds of weird sensations in my head, mostly in the front. I can't do anything besides sit in a dark room even though I have tons (well ok not tons) of energy.

I've been spending a lot of time figuring out the reason for all this. I have no PEM or increased fatigue currently. I used to have these same neuro symptoms, albeit to a lesser extent, when I was bedbound and in a bad state, but I have improved a lot over the years, and they have completely subsided. I've made no changes to my regimen or daily activities in the past weeks. Obviously I know with ME things can go up and down without a specific reason but this is so extrene that I feel like there has to be some cause.

The thing is, a week ago I had a couple of hospital visits. On Monday I had a 24hr pH test, where they insert a device with a sensor attached to a tube in your nose all the way to your stomach. This tube is attached to an electronic device. You keep the tube in and the device with you until the next day when they take it out. The next day I also had an echography.

My question is: could either of these have caused this? The tube has spent a full day right in the area where I have these sensations now, perhaps it's some sort of sensitivity to electromagnetic waves? Or could it be the ultrasound waves from the echography? Would love to hear some thoughts on this since I'm getting quite desperate out here... Thanks!

 

[Wishful]

I think electromagnetic sensitivity is extremely unlikely. Likewise lingering effects from ultrasound. Just as a wild guess, a day of sensory input from nerves that normally don't have that input caused increased responses in those nerves. Synapses, or whatever else, strengthen with usage, so this input probably strengthened them a bit, and now they're firing more often due to random noise. I don't have any suggestions for how to counter that, but maybe a bit of research into that sort of phenomenon might turn out something.

I hope ME doesn't make us more sensitive to such unusual stimulus.

 

[Wolfcub]

Hospital visits, appointments, procedures, all cause quite a high level of stress, I think. Not only at the appointment itself, but the driving or whatever, to get there, maybe getting up earlier....etc And your PH test was invasive.
There's definitely got to be some level of PEM from appointments.

Last week (four/five/six days ago) I had some electrical problem, waited two days for an electrician, had to get up too early in the dark for 3 days, phone calls, shifting some food from my melting freezer to my neighbour's freezer, cleaning out the freezer, more phone calls, minor stresses. Not the end of the world, but I began feeling PEM from that two days ago.
And the PEM brought in some old symptoms which I hadn't felt for a while (I thought they had gone) also neurological.

 

[Bergkamp]

Just as a wild guess, a day of sensory input from nerves that normally don't have that input caused increased responses in those nerves.

This actually makes a lot of sense. It is indeed sort of the same feeling I get after having experienced too much contact/touch (only a lot more severe). Now that I have been 'touched' in a place that never gets touched it could have definitely triggered this exaggerated response.

Hospital visits, appointments, procedures, all cause quite a high level of stress, I think. Not only at the appointment itself, but the driving or whatever, to get there, maybe getting up earlier....etc And your PH test was invasive.
There's definitely got to be some level of PEM from appointments.

Last week (four/five/six days ago) I had some electrical problem, waited two days for an electrician, had to get up too early in the dark for 3 days, phone calls, shifting some food from my melting freezer to my neighbour's freezer, cleaning out the freezer, more phone calls, minor stresses. Not the end of the world, but I began feeling PEM from that two days ago.
And the PEM brought in some old symptoms which I hadn't felt for a while (I thought they had gone) also neurological.

Thanks, that's helpful. I did not experience any PEM though, or any of my normal PEM symptoms, just this weird sensory feeling. All those factors you mention could have definitely played a role though - I did have to get up and do stuff so early whereas my mornings are usually very slow!

 

[Wishful]

Wolfcub's response could add on top of mine: the various stresses of the hospital visit could have altered the neurochemical environment which made the response to new stimuli more severe and more persistent.

I don't consider the typical hospital environment to really promote 'wellness'. It's too stressful for that. I think of it as more of a repair shop, where you go to get dents removed, parts replaced, and fluids changed.

 

[Bergkamp]

Wolfcub's response could add on top of mine: the various stresses of the hospital visit could have altered the neurochemical environment which made the response to new stimuli more severe and more persistent.

Yep very likely.

I don't consider the typical hospital environment to really promote 'wellness'. It's too stressful for that. I think of it as more of a repair shop, where you go to get dents removed, parts replaced, and fluids changed.

Fully agree. On top of that I got annoyed by my treatment in there and realised that the more time I spend in hospitals, the more I come to the conclusion that the medical system just doesn't work for cases like me. Which resulted in a long rant to my parents afterwards

I actually realised today I had these same type of neurological symptoms (but to a lighter extent) after having used one of these headbands that measure your brain activity during meditation for a while. Thought that was pretty interesting.

 

[Bergkamp]

Wolfcub's response could add on top of mine: the various stresses of the hospital visit could have altered the neurochemical environment which made the response to new stimuli more severe and more persistent.

Yep very likely.

I don't consider the typical hospital environment to really promote 'wellness'. It's too stressful for that. I think of it as more of a repair shop, where you go to get dents removed, parts replaced, and fluids changed.

Fully agree. On top of that I got annoyed by my treatment in there and realised that the more time I spend in hospitals, the more I come to the conclusion that the medical system just doesn't work for cases like me. Which resulted in a long rant to my parents afterwards

I actually realised today I had these same type of neurological symptoms (but to a lighter extent) after having used one of these headbands that measure your brain activity during meditation for a while. Thought that was pretty interesting.

 

[valentinelynx]

On Monday I had a 24hr pH test, where they insert a device with a sensor attached to a tube in your nose all the way to your stomach.

I'm wondering if during the placement of the sensor, your head was bent backwards or otherwise in an unaccustomed or strained position for a period of time? Your symptoms are similar to those experienced by people with craniocervical issues and such people's symptoms are often sensitive to neck positioning.

 

[Bergkamp]

I'm wondering if during the placement of the sensor, your head was bent backwards or otherwise in an unaccustomed or strained position for a period of time? Your symptoms are similar to those experienced by people with craniocervical issues and such people's symptoms are often sensitive to neck positioning.

Yeah it was actually! Right before the insertion of the tube for the 24hr pH study I also had an esophageal manometry for which I had to indeed bend my head fully backwards for about 5-10 minutes. Very interesting suggestion. I have previously considered CCI/AAI, because my symptoms kind of fit it, but never really fully exp!ored that avenue.

That would mean though that if I just keep my head in a normal position it should calm down at some point and those new symptoms should subside, right?

 

[Learner1]

That would mean though that if I just keep my head in a normal position it should calm down at some point and those new symptoms should subside, right?

One might hope. However, you might want to read member jeff_w's site:

"MEchanical Basis - Craniocervical instability, Atlantoaxial Instability, Myalgic Encephalomyelitis, ME, CFS" https://www.mechanicalbasis.org

And Jen Brea's Medium articles, especially the one about her asking you after thyroid surgery with a serious neck issue dyrcyo the head positioning during surgery, and take them to a neurologist.

Jeff seems to be cautious about recommending surgeries these days and mentions injections. I was in 2 significant car accidents affecting my upper neck, and have every reason to have a CCI issue. However, I don't as I did prolozone and prolotherapy injections, cranial sacral therapy, and physical therapy and was able to strengthen my neck muscles to better support my spine and lessen pinched nerves.

Curcumin and boswellia can reduce inflammation and may help, too.

In addition to the CCI instability theory, I'm wondering if the test affected your vagal nerve. Do get it checked out.

 

[Wishful]

That would mean though that if I just keep my head in a normal position it should calm down at some point and those new symptoms should subside, right?

I think we don't know whether resting those muscles is better than exercising them the right way (whatever the right way is). I've had a reduction in waking during the night, and one possibility is that it's from adding some arm/shoulder exercises to my daily walks. Those exercises probably alter blood flow, lymph flow, maybe tissue volume, and various other things that would affect nerve function. I'm still experimenting to see whether that really is the cause. If simply avoiding neck bending/stress doesn't help, you could experiment with exercises or a massage.

Does anyone know whether liniment is helpful for CCI or similar neck issues?

 

[valentinelynx]

That would mean though that if I just keep my head in a normal position it should calm down at some point and those new symptoms should subside, right?

Some CCI/AAI patients find relief if they wear a hard cervical collar continuously for several days. Some of the CCI expert neurosurgeons use a trial of continuous hard collar wearing for up to two weeks as a diagnostic test for CCI/AAI that would respond to craniocervical fusion. There are several brands of hard collar. The one recommended by Dr. Bolognese is the Aspen Vista Multipost (not the therapy one). It's nice because it's adjustable and you can crank up the amount of vertical pressure (traction) it provides. I got mine from EBay at a good price (and new), such as this one. It's also important to avoid motion that jar the neck, such as riding in a car or some sporting activities and wearing a hard collar can decrease the stress on the craniocervical region from such activities.

ssues?

I doubt that liniment would help, as it is unlikely to penetrate deeply enough to affect inflamed ligaments of the craniocervical junction, if inflammation is causing symptoms rather than ligament laxity. Liniments or heat therapy are useful for muscle pain, inflammation or spasm. For those with CCI the problem is typically ligaments that are too weak or too lax to keep the skull from settling too low on the top of the spine, or an abnormality of the top two cervical vertebrae pressing on the brainstem. Simply strengthening neck muscles is unlikely to help, although improved postural control may, in some cases.

 

[lenora]

Interesting that cranial-sacral therapy should be brought up (go to an Osteopath who does that only), as while I don't have CCI I do have other neurological illnesses that resulted in pioneer surgery over 35++ years ago. (Osteopaths also choose different specialties. It's often harder to find one in CS therapy itself.)

Regular PT is a definite "NO" for us, you want/need myofascial therapy, especially someone who knows neck injuries (which are common due to accidents, etc.).

I fully agree that tests can often make something we're suffering and living with much worse. The up/down ofnew machines and what can be looked for. I find it interesting that Jeff now suggests a course of injections. I know that in my case I would steer clear of injection having anything to do with the spinal cord (my problem areas), but neck ones are something I would definitely check out.

Also use cushions and pillows to keep your head in the most comfortable position. Be careful of lounge chairs that go back and may throw your head out of position again. Take those pillows with you. Even the act of getting dressed can be a minefield if you're having a particularly bad day. I had two tests done this week....and while both seemed normal to others, for me they resulted in extra pain and fatigue. And bear in mind that this is all these years later...although I have had a bad year as far as hospitalizations and surgeries for other matters go (but I'm almost 74).

So see your neurologist, tell him about the test where your head was in a difficult position and, if he isn't aware of CCI, It's fine to give him a copy of info about it. Doctors simply don't have time to read all the latest research material, although most try to keep up as much as possible.

Boswellia & bromelain are excellent for inflammation (come from pineapple) & I've used it for years. It's a shame that you had to have a controlled problem arise as they were looking for others. Try not to keep your mind on it, and nature may take it's course (with a little help) in healing once again. Feel better. Yours, Lenora.

 

[Wolfcub]

I don't consider the typical hospital environment to really promote 'wellness'. It's too stressful for that. I think of it as more of a repair shop, where you go to get dents removed, parts replaced, and fluids changed.

That's exactly what hospitals are! And it is very hard to relax in one. It's even harder to sleep in one,

 

[lenora]

@Learner1.....Would you kindly tell me how you accessed jeff_w's site. I want to read about the injections for CCI and what made him change his mind (if he did). That information may prove helpful to many people. Thanks....Yours, Lenora.

 

[valentinelynx]

Would you kindly tell me how you accessed jeff_w's site. I want to read about the injections for CCI and what made him change his mind (if he did). T

@lenora I'm not @Learner1, but I think I can address this to some extent. On @jeff_w 's site MEchanical Basis, he has a page called "Recovery" which lists several topics that he plans to add to his blog in the near future. One of them is called "Stem Cells in My Lower Cervical Spine and Platelet Rich Plasma (PRP) in my Lumbar Spine". I think that to date he has discussed his experience with these treatments primarily on social media platforms, such as Twitter and Facebook.

I should clarify, however, that Jeff did have have a craniocervical fusion, as he was in extremely dire straits with his CCI. You can read his story on his site here. It's a long story but well worth reading. Subsequently he underwent regenerative medicine treatments to strengthen and stabilize lower areas of his spine. In the lower cervical area, I know he was concerned about the likelihood the upper cervical-skull fusion putting extra strain on and destabilizing lower cervical levels, to hopefully avoid needing a lower cervical fusion operation in the future. I don't actually know what issues he was addressing in his lumbar spine.

I am aware of a number of people with CCI who are pursuing the regenerative medicine pathway through Regenexx in Colorado and a few other clinics, or platelet-rich plasma injections or prolotherapy, hoping to avoid surgery. There's only anecdotal evidence to date on the effectiveness of these approaches for CCI, and it's my personal opinion that it's being oversold as proven and safe. The urge to avoid surgery is very understandable, but perhaps it leads to overeagerness to pursue unproven alternatives. I think that these approaches may have a place for some patients but be inadequate for others, and I hope that the physicians performing the procedures make this distinction. To reiterate, however, Jeff W didn't have stem cell injections for CCI but to prevent the need for lower cervical fusion(s).

My apologies to @jeff_w for opining on his reasoning and especially if I didn't get things quite right!

 

[Learner1]

Thanks @valentinelynx

To be clear stem cells, prolotherapy (and prolozone) and platelet rich plasma are very different modalities.

I had platelet rich plasma done on my turn rotator cuff that had 3 torn muscles as an alternative to surgery. It was done by an MD/PhD and involved removing a very big syringe of blood from me, spinning it in a centrifuge to extract the platelets then injecting them using ultrasound guidance. It cost $90 and was entirely successful. I was able to lift weights within 2 months, and I avoided the awful rehab from the surgery which can take a year.

I had prolotherapy done with testosterone - 18 injections, 9 down each side of my spine, done by a naturopathic doctor who'd been a physical therapist prior to his doctor training. It was ultrasound guided as well, to miss my spinal column. I had it after 12 years of suffering from a car accident which made it painful to have my neck in certain positions and excruciating pain when my husband drive over a speed bump. The theory was to stimulate muscle growth to strengthen the muscles holding my neck up. It was successful and I was out of pain for the first time in years. It was $350 for one set of injections.

Three years later, I was rearended in another car accident. I had prolozone, with ozone and nutrients, which reduced pain and helped my lower back and neck heal. The injections we're about $200 each and I did maybe 5 sets of them. They weren't ultrasound guided as they were farther away from my spine. I also had physical therapy.

When I first saw jeff_w's story, I shared it with my physical therapist, a doctor of PT, and she examined me and moved my head into some positions that I would have known I had such a problem, but I was fine with no pain.

I've also fine a lot with nutrients which promote muscle and collagen growth.

Stem cells are another game entirely and far more expensive - $3,000 to $30,000. They are also more experimental. You can use your cells or embryonic ones from Panama. They may work for orthopedic issues, but the industry has a lot of hype and the promised made are unrealistic.

After my experiences, I think I avoided a spinal problem that can cause ME/CFS symptoms, and think that other patients might benefit from prolozone, prolotherapy, and PRP before trying surgery, in certain situations. The risks are lower, for sure, as long as sterile procedures are used and puncturing the spinal column is avoided.

 

[valentinelynx]

Stem cells are another game entirely and far more expensive - $3,000 to $30,000. They are also more experimental. You can use your cells or embryonic ones from Panama. They may work for orthopedic issues, but the industry has a lot of hype and the promised made are unrealistic.

I would not recommend using embryonic stem cells or umbilical cord cells or anything like that. It appears these are largely scams & there are no living cells in these products. Plus the businesses selling this stuff are quite sketchy. Stem cells derived from your own tissues may be a more reputable treatment. This is what is used for knee arthritis, disc disease and such. There's movie about the stem cell industry that I recommend. It features interviews with Chris Centeno, MD of Regenexx (where a lot of CCI patients are going for regenerative medicine treatment, with varying benefit) and is called "From Jail Cell to Stem Cell: The Next Con for the Ex Con" (the title gives you a pretty good idea where it's going...). Sadly, the movie isn't free to watch anymore. But I think it's worth $5.99.

https://regenexx.com/blog/from-jail-cell-to-stem-cell-the-next-con-for-the-ex-con/#gref

 

[lenora]

Hi Valentinelynx....Kindly see my reply under Emotional Support, Chatting with Lenora, page 27. I did answer you and Learner 1, but I talk a lot so have my own special place. Just wish you had been sent there...and perhaps you were. Yours, Lenora.

 

[Learner1]

@valentinelynx Thank you for the warning. I agree that there's a lot of sketchy activity by folks hawking stem cells, though, as you mention, there seems to be promise by using one's own cells for orthopedic problems, but it's the wild west out there with lots of charlatans.

But, it's a common mistake to link.stem cell treatments to platelet rich plasma, which is using one's own platelets. It strikes me that PRP is sort of like darning a sock, providing more surface for the rebuilding of tissue to occur. It is used in professional athletes and is done in university medical centers.