NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Neuropathy
- This topic has 9 replies, 3 voices, and was last updated 10 years, 7 months ago by Barbara.
August 8, 2012 at 11:57 am #283ScaredSingleMamainMarylandParticipant
Hi all! Does anyone ever experience a burning sensation at the hairline and also at the eyebrow. I am having this on the left side. It started about a week ago along with pressure in my left eye on that evening. It is mostly a burning sensation but sometimes has a crawling sensation as well. It started out happening mostly at night, now it seems like it is worsened by any movement of my face (talking, smiling, coughing, etc.) all throughout the day. Do you think this is some form of neuropathy?? I have neuropathy symptoms in my arms and legs for some time but this is the first time I’ve experienced anything like this on my face. Unfortunately, I am still dealing withh problems with medical assistance being finalized so I still have to wait to see the Dr. Maybe it is worsening neuropathy…ny thoughts??
Ang.August 8, 2012 at 5:14 pm #2731
I don’t know if this is helpful but I can relate to the crawling feeling, which in my case progressed to fasciculations (twitching you can see under the skin). These fasciculations can be triggered by movement. It may be the same, I don’t know.
I’ve never got to the bottom of these, except for the fact that I used to get hundreds of the fasciculations every day, every second some part of my body would be fluttering or twitching. Yet, when I was put into a Philadelphia cervical collar 24/7 (in 2007) these substantially reduced in frequency, duration and intensity. So, some of it could be to do with transmission through the vagus nerve (which transmits messages from each part of the body, back to the brain, notifying it of what’s going on).
However, I do believe there is something additional not right, such as electrolyte, mineral and vitamin malbalance or deficiency. Off the top of my head I remember both Potassium and Magnesium mentioned in this aspect but there’s more that I can’t remember, or don’t know of. One thing is for certain, that I have been advised this year of certain deficiencies (see the end of my diagnoses list below)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!August 13, 2012 at 4:19 pm #2743
I, too, have neuropathy. It can be pretty awful. I am not sure that I experience it identically, but, I definitely have creepy crawling sensation at times. I had been told once by a chiropractor that pain doesn’t always ‘register’ as the traditional OUCH sensation. While I don’t necessarily classify this gross feeling as pain, I sometimes think of it as a sensation that remains nameless. I feel that I have actual pain sensations that would fall outside of the normal verbage for pain too. Like, pain with no name. Intense feelings of grossness that I cannot connect descriptive words to.
That ‘rotting’ type of sensation is so frustrating to me. It makes me think that my time might be best spent orchestrating a thorough and proper autopsy versus trying to explain what is wrong with me to a doctor. I am POSITIVE that there is quite a lot wrong with my ‘insides’ but cannot prove it (at least not nearly to the extent that I am certain it exists) and describing it has proven a huge challenge. Plus, it seems to be ever-changing – or more layering of the next dreaded ‘issue’ that commands my attention over the last ‘issue’. It never goes away but is overtaken, only to re-erupt with a vengeance again. Vicious cycle.
I know I experience absolutely dreadful sensations that have yet to be defined by descriptive words. Generally, in the familiar ‘physically battering layers’ that I experience daily with regards to pain, exhaustion, nausea, etc etc etc.
We support you and pray for you.August 13, 2012 at 7:37 pm #2746
Many of us know exactly what you are trying to explain Give My Daughter the Shot! As Dr Diana says, this condition evolves over time. It is an ever changing condition, probably because as one body system has to ‘adapt’ to accommodate for something going wrong, it has a ‘knock on’ effect on another system, and there we go ad infinitum!
Dr Diana is looking for (and has found) ways of breaking this perpetual decline.
(UK)August 14, 2012 at 5:08 pm #2751
You’re right, Barbara. It’s terribly sad to think of how much havoc and compensation our poor bodies are subjected to EVERY DAY! It may well account for the exhaustion, oh the heinous exhaustion. Like a cell phone that’s searching for a signal – screen sorta appears to be freaking out, shuts down other systems, can’t finish any given task, possibly overheats, sometimes seizes it up, and definitely kills the battery RAPIDO!August 15, 2012 at 5:56 pm #2754
Lol! I’d say that’s a pretty good analogy. It’s just like Dr Paul Cheney says – he’s surprised we’re still alive!August 16, 2012 at 7:39 pm #2766
Funny you should mention that, Barbara. Remember the brief ‘touching’ on the topic of wondering whether or not we might wake in the morning. I (ow) wonder what our body must be going through to think something like that.
Remember my saying that: long ago, during pregnancy, I was told to listen to my body and that my body was smart. I’d spent my life taking that to heart. You and I were discussing the sentiment that I can no longer listen to my body, as I once could, because it was such a traitor to me now.
Ya know, I’ve since had the thought that – WHAT IF MY BODY STILL WAS SMART?! What if I was just in very bad shape on those handful of nights where I wondered whether or not I would wake. Dr Cheney’s saying that made me go … hmmmm.August 17, 2012 at 8:19 am #2768
I know we discussed it and, I vaguely remember Dr Diana talking about wondering whether she would wake up in the morning too, in fact I bet there are many on here who have had that feeling, YES?
I can only think that our body has had to find ‘alternate ways of processing’ so many times in our lives, that it has become supremely capable (under the circumstances) indeed a ‘survival at any costs’ machine! I don’t think your body is a traitor to you, I think it’s doing the best it can under the circumstances, so, anything at all that you can help it with, will make a difference. I think we have to listen to our bodies very keenly, as the balance is so fine.
I am certain that ‘additional energy’ is taken up trying to perform all of the additional processing, in order to maintain the internal balancing act.
(UK)August 30, 2012 at 8:58 pm #2828qanikParticipant
I have pretty bad small fiber neuropathy. It used to be just in my feet and then shin area and then hands but now I actually get it in the face and neck and upper body. mine feels like a horrible sunburn with intermittant cold kinda of dead feeling feet My sweat test clearly showed the areas when I was at Mayo.
As far as the creepy crawlies – i have had that feeling as well as the fasiculations and twitching non stop sometimes. I had a positive voltage gated potassium chanel antibody and they told me one of the anti seizure meds would help the feeling. I took neurontin for awhile and it did stop it but it made me even more tired and fatigued which is not something I could deal with. So i have the twitching back
BrentAugust 31, 2012 at 4:15 pm #2829
You see this has me curious. I’ve thought for many years that my limb afflictions have a ‘circulatory’ component involved. Your description of the neuropathy you suffer only serves to convince me more of this because I know that your main bodily organs are served first, with available blood and your periphery (for want of a better word) gets what’s left. A muscle starved of blood therefore starved of oxygen and nutrients, whilst also loading with toxins which it can’t ‘offload’, is gonna misbehave and spasm, twitch etc.
Even at the height of summer I need extra layers of clothing, today being a fine example it’s August, yet I’ve had my fire on, my central heating on and I’m typing this with fingerless gloves on, a fleecy jacket, long trousers, over my legwarmers, over my support hose!
I rest my case.
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