Hi people, I joined this site last year because it was suspected that I have MS, but after an MRI (showing 2 small lesions) and a (useless) 10 minute consultation with a neurologist it was concluded that I suffer from silent migraines.
By now though I have serious doubts about this diagnosis, since I also have symptoms which don’t match with migraine (sudden debilitating fatigue, muscle spasms and ‘the hug’) but with MS, alongside most of the other symptoms mentioned on this site.
I also have this intense crawling sensation on my scalp, like an electrical current rippling over my head, mostly from the back towards the front. I would be happy to hear if anyone else in here recognizes this since I’m wondering if it is one of those odd symptoms which aren’t on the official list but are common among patients anyway.
Apart from that I also experience a sort of ‘brain zaps’ especially when I’m lying down at night to go to sleep. It’s a really bizarre feeling, like my brain is jolting inside my skull. This waxes and wanes over the weeks and months, like the other symptoms. Does this sound familiar to anyone?
Thanks for reading so far, I’m trying to get some more clarity since I am contemplating on getting a second opinion. Your input is greatly appreciated.
Hi Clarity! I am sorry your diagnosis hasn’t offered you any helpful treatment options. I think you are well within your rights as a patient to seek a second opinion. If you are interested, you can check out our sister site dedicated to migraines to see if your symptoms and issues line up with migraine symptoms — https://migraine.com/.
Your crawling and zapping sensations could be any number of things, as people living with MS do frequently experience a variety of tingles, shocks, and numbness through out the body. Here is some information on MS related pains and tingles that you may find interesting — https://multiplesclerosis.net/symptoms/pain-chronic-pain/.
While we cannot provide medical advice, for your safety, I would reiterate that you can definitely seek a second opinion if you are not happy or confident in your original diagnosis. It’s okay and smart to advocate for yourself and your overall health!
I was diagnosed with RRMS in 2006. I have the tingling, crawling sensations on my scalp. I also have the brain zaps. A sharp, sudden stabbing pain in my brain. It can be once or a few times in succession. Very strange sensations. I hope you had a second opinion from a MS neurologist.
Hello, do you also suffer from migraines? At 20 years old I suffer horribly from migraines with aura and recently these type of painful zap headaches. The crawling sensation also happens on the top left of my head on and off, feels weird. I’m hoping to go to the neurologist and possibly find out if I have MS.
Thanks Erin and Shari. I’m going to have a look at the links Erin, thanks for those.
Shari, thanks you for sharing your experiences, it is really helpful to know from first hand that it could be related to MS. I still haven’t had a second opinion since I’m completely broke. I will get some money next month and am thinking to spend it on a consultation though I’m very sceptical since the consultations I had up to now were completely useless. Both neurologists were hardly interested in my complaints, but I’ll try and find a good one via the patients organization in my country.
I hope you do receive an adequate treatment Shari, take care.
Hi Clarity. Last year I had two major electric shocks in my brain. Brain scans didn’t reveal anything. I went to my Chiropractor. He said I have loss of curve in my neck and some degeneration of one of my vertebrae. Our bodies can heal both with proper chiropractic adjustments and some daily physical rehab. The shocks stopped immediately after the chiropractic adjustments. Re crawling feeling, I had that too, I got rid of it by applying Frankincense oil to my scalp four times per day (you have to mix it with carrier oil, read up on it before mixing). Frankincense oil can heal your nerves, it’s been around for thousands of years for a reason b/c it’s a “holy ” oil with multiple applications, it even works at the cellular level. I was very frustrated with MD’s also, you’ll get much worse or die before you find one that truly cares or is open minded. Good luck to you!
Thanks for the tips ficutlo, I already went to the chiropractor in the meantime and though it didn’t completely solve the tingling it definitely got less.
I just bought some Frankincense oil and will try it, if it doesn’t work out at least I will smell wonderful:-).
Everything everyone has mentioned I’ve been struggling with for over a year now and scans came back with nothing and doctors keep telling and treating me for anxiety and panic attacks and migraines. But I continue to explain it’s none of those things but since nothing in tests they run come back showing a problem they just kind of have up and it’s frustrating spending all the money to get someone to listen. I would like to keep up with this forum to see how everyone else is handling the issue and the answers they get.
Tmpatto, same here, I’m not getting anywhere with doctors. I guess I have to study hard and find out myself what is causing all of these symptoms.
My family doctor suggested I try another neurologist but I can’t stand any of that anymore. I now contemplate on a Lyme test, since I had it in the past. Maybe it is still there and causing all of these complaints.
Good call @tinklecrawly! I’ve encouraged this community member to share their experience here and have also removed the personal email for everyone’s safety and security. Thanks so much for the help! Best, Shelby, MultipleSclerosis.net Team Member
Hi @patriciajudybanks, thank you for your comment! We’re so glad to hear you found something that works for you. It’s important for us to note that while this treatment may work for some, different people may respond differently. It’s best for people to discuss their options with their doctor and/or specialists before trying anything new. Thanks again for sharing! Best, Shelby, MultipleSclerosis.net Team Member
Hey @tinklecrawly did u ever find anything on it??if not can I suggest u look at the spiritual knowledge of it because you’ll be surprised at wat they are saying about it because it happens to me and it was natural for me to think that this wasn’t no disease it was something spiritual..checc this out…
Im not diagnosed with MS, I found your post with google.
Im having the exact same thing. Electrical crawling feeling, like chills moving on my scalp, in the top of my head and sometimes on forehead and between eyes, also sometimes a sensation like theres a pencil behind my ear. It doesnt hurt, but is very disturbing.
Strange thing i noticed, it decreses if i plug my ears with earplugs, quite fast, in 5-10 minutes.Try the ear plug thing and report back to me. maybe im just imagining but it seems to help. I also have some tension neck but i cannot imagine it doing this. This sensation can stay away for few days or a week, and then it comes back out of nowhere and stays from few days up to week. It wont occur as much when you lay down, and almost completely gone when you sleep. But in a while after getting up, it starts.
Its like chills in your head, some kind of disturbance. Desperate to find out what this is..
Thanks for sharing MForell, I’ll try the earplugs, would be great if it would solve this thing! That would be at least one symptom less. Do you have any other neurological symptoms? Like head pressure or electric feeling in the rest of your body?
Only in head/face. Like i said, the preassure can feel exactly like you have a pen behind your ear, or a little higher on the side of head. Sometimes it seems to be on top of eye or between eyes like theres a band around head. And the tingling chills usually move around. When its at its worst, i can get brain zaps too. that sudden tremble in your brain. The scalp thing is not anxiety, i know because it wont go away with diazepam etc.
But it sure does cause anxiety.
I was diagnosed with MS 9 1/2 years ago.
I have had what I call the creepy crawly on my scalp that would cause an increase in my anxiety. I was already on an anti-anxiety medication, and we increased my dosage, which seemed to fix the problem. However, I have been having occasional episodes again in the last year. I find that it’s also a signal that I am very tired and need to go to bed. It’s gone in the morning.
I have also had what I call humming a couple of times along the left side of my body, which is the side most affected by the MS. When I mentioned that to the neurologist, she had no clue what I was talking about. It’s not painful, but it is annoying.
I have also had a series of off and on of random places on my legs that feel like I was just poked with a pin. It only occurs once in that spot, and then a few minutes later it will happen in another spot. It doesn’t happen all the time. I can go days without it before it happens again.
Becky57, tmpatto and MForell, I recognize all the things you mention, which on the one hand is comforting because I now know I’m not the only one with this set of complaints and that they all belong together to one syndrome. On the other hand it is worrying since it adds to my suspicion that I might have MS after all (got a negative diagnosis two years ago). Since a few weeks I on and off also have troubles with swallowing, not food in particular but in general. I’m not drooling yet but sometimes close to it. What bothers me most though in my daily functioning is the debilitating fatigue and lack of concentration I’m experiencing.
My GP suggested I make another appointment with a neurologist, but I’m quite weary of that since the previous two were hardly interested in my complaints and it costs me a lot of energy to handle that, not to mention the 385,- I’ll have to pay. Not sure what to do right now, will visit the GP again and discuss it again.
Thanks for sharing your experiences, it’s really, really helpful!
The anxiety meds they have me on is propranolol and a generic lexapro. They also have me taking 1k mg of B12 for the tingling and numbness. I was taking it daily as suggested but it made me feel worse and panicky all the time to where I couldn’t even get through a work day without having to leave or sit in the bathroom with an ice pack to calm down. So now I take the B12 once a week. I wouldn’t say the anxiety meds didn’t help me at all. It helped with the attacks I was having because of these issues but the issues never quit. I get the crawling ehat feels like in my head but also on the back of my scalp. My arm gets tingly and then numb. And I just feel so tired and exhausted I feel like if I’m not at work I’m in bed lying down and I’m only 24 and shouldn’t feel this tired. I haven’t seen a neurologist or anything yet as I wasn’t sure if I needed to be referred to one but also money is a factor. I appreciate keeping up with everyone else’s comments and diagnoses of the same issue.
Hi MrForell, I been getting these strange feelings in my scalp as well. It’s Ben about a month. I haven’t been diagnosed yet. It all started with being very itchy all over at night and very itchy in the head.. at first I suspected I had scabies and went to a dermatologist and gave me a cream for the body. The itching has gotten better but not
Completely gone.. and now the feeling in my head is almost everyday, feels like electricity or static. I did blood work and all came up good, did a brain mri but without contrast and all looks normal, about 10 months ago.. I went to a neurologist but with a different complaint.. cold feet and sometimes numb.. but he said it’s all in my head.. that I’m fine! Very frustrating, my feet still get cold and numb at times.. not as much as before. Now I’m thinking in getting a Lyme test and based on that .. go see a different neurologist for a second opinion. I’m a 35 y/o male. Those are the only symptoms I have for now. Somewhat healthy. Any suggestions will be appreciated it. Could I have Ms?
Im still having the shivers on back of my head, forehead and sometimes on top of eyes.. Im 40 year old male. This is not stopping i waited too long, gonna take lyme bloodwork tomorrow and see if i have neurolyme from old unnoticed bite.. if negative, im pretty sure then that i have MS. This starts every day slowly after getting up from bed, the crawling shivers on the head. Also i get nausea working on computer looking at the screen?? Also my right eye is not normal. Vision is blurry sometimes and its watering a lot. the shiver was also on my left leg one day. All i can think of is MS or Lyme. Im terrified at this point.. gonna go for lyme test tomorrow.
Thanks for the follow up, I did get a bite in my arm about 3 months ago at the beach, 2 weeks after that is when the itching in all my body started.. and I thought it could be scabies, but I’m doubting. Please keep us updated with your Lyme results. I’m gonna get it
Done this week as well. I been reading and it’s a 2 step test. Wish you the best, I’m very worried too.
I have never noticed anything bite me, and this eye thing points pretty much to MS symptoms for what i have read.. Gonna take the first bloodtest tommorrow and see if they indicate positive, then on to further tests.. but i highly doubt this is lyme. No joint pains at any point. Well see.. good luck to you too.
Hi Mforell, wondering how your Lyme year went? Did you get the results? I was not able to get mine this week.. and the soonest appointment for a neurologist is at the end of March.. so frustrating and upset at the medical system. I’m going to keep looking for answers and I hope you get your diagnosis soon. I been getting these sensations in the head every single day for the last month.. lately some days are better that others but not completely gone! Keep us posted.
Considering a Lyme test: don’ trust the results of the Elisa and Western Blot, they are notoriously unreliable. On lymedisease.org you can find more info on this.
I myself tested negative on both the Elisa and Western Blot. Shortly after that I ordered an LTT-test (google it) and it returned positive.
Hi, TBH, I only noticed the jerking in my hands because it would happen when I was playing piano a few times… otherwise it was internal too. I also experience the pencil feeling, behind my ear.
I am a nurse, and I went to the GP in 1989/ 1990 because I had symptoms of MS (dizzy spells, tingling pins and needles in my right arm and hand, pain in my knee flare ups and painful legs), he tested my reflexes only, said “if anything you have hyper-reflexia”, in other words, my legs jumped a mile! That is actually a red flag for MS (I know that now).
I have had tinnitus for as long as I can remember and found that I was losing my ability to hear in a crowd or noisy environment. So on a separate occasion (2005) I visited the GP who referred me to an ENT consultant who booked a head MRI. They said that there was no cancer detected and sent me away.
In 2010 I had an operation for something else, and my notes had been left on the table. As I looked through them I found the MRI report from 2005 ENT appointment, which stated “multiple high frequency nodes detected throughout the white matter, if shows signs of demyelination, to see a neurologist”. No one told me of this, and I had been showing signs of demyelination which no one followed up. I went back to my GP who contacted the radiologist who had said not to worry about it. Of course I was worried about it, but at that time the pins and needles, knee pain etc. that took me to the doctor years back were no longer present, so I didnt go back about it.
I have since found out that they wont inform you unless you report symptoms. I had reported symptoms but it was years earlier and therefore wasn’t highlighted.
My sister died of cancer in 2012, which led to a massive relapse. Pain and pins and needles to right arm, inability to write, drop foot, clonus (uncontrollable shaking) to right leg etc. And of course… the “head rush” feelings and crawling scalp.
I paid privately to see a neurologist. He did a thorough neurological clinical exam on me. I had had blurred vision but put it down to my age, although he looked into my eyes and said he could see signs of demyelination to the retinas and the pain behind my right eye sounds like optic neuritis. He asked me what I thought it was, I said MS, he said it certainly sounds like it, and told me to see my GP. He referred me to the local opthalmologist who sent me to The Morfield Hospital in London. I had Visual Evoked Potentials undertaken which showed clearly damage to both optic nerves from demyelination. This used to be the test undertaken for MS along with lumbar puncture, which I didnt need.
So when I went to the NHS neurologist, the MRI and the clinical symptoms were then recognised and my diagnosis was confirmed. At last, I was now able to be given support by the neurologist, MS nurses and started on disease modifying drugs and physio, and other treatments and therapies. It took from 1989-1990 to 2012 to get a diagnosis!
I think if I had thought of it before, I would just phone the local hospital and ask to speak to “the MS nurse”, they probably could do something for you to get a diagnosis.
Sorry this is like an essay!! But it just goes to show the lengths I had to go through for a diagnosis.
Please keep us posted!
@teresa, thank you for your essay:-), I really appreciate it. One thing I will definitely take note of is that it can take a long time and that it takes a lot of patience and perseverance but in the end it is still possible to get a diagnose after all.
As I already wrote somewhere else in this thread I went to neurologist #3 today to no avail. Was sent home without a diagnose no other than ‘it’s not MS’. Which in itself would be something to be happy about if I didn’t have the feeling of not being heard. There was too little time to speak about all of my symptoms, and the neurologist concluded it’s not MS due to the fact I have at least some symptoms all of the time. According to him this doesn’t match MS. I wasn’t aware of that being a criterion for excluding MS.
I don’t know how to take it from here. The MS nurse won’t be willing to talk to me without a diagnosis, so that’s not an option. I think I will call my GP again tomorrow, just to have a chat and see if he still sees other options. I don’t necessarily want an MS diagnosis, I just want to feel well, be able to work again and enjoy my hobbies. I don’t care what it takes (well…. as long as it is not a lumbar puncture…)
By the way, I also have experienced these foggy brain and fatigue episodes for the last 15 years. I also tend to feel a bit feverish during these episodes. It started with one day every few months and over time this got significantly worse, now resulting in one clear day every few months…
I have symptoms all the time, MS isnt just relapsing remitting! What you need is a thorough neurology clinical assessment which is what I paid for in the end at a private consultation. It would be lovely if it isnt MS, but what ever it is it sounds like it to me. Please let me know how you get on…
Test came back clearly negative. Not sure if thats a good thing, was kind of hoping this to be resolved. My symptoms are same as yours, stay away for few days or decrease, then comes back. Im stil not 100% sure if this could be from tension neck but thats wishfull thinking i quess.. Since theres nothing to lose im gonna go to massage to check out my neck and after that i have exhausted all the possible reasons for this, except MS. Do you have neck tension?
Hi MForell, i do have tension in my neck and a very stiff back, but i really doubt that the tension could be causing these sensations.
I’m getting the Lyme test done this week, and luckily i was able to get an appointment with a neurologist for the 31st of this month.
My sensation is mainly in the left side of the head, like there’s always something moving in there and sometimes spreads in the back of the head and a little in the forehead. My feet get numb sometimes when sitting down but a different neurologist thought it was all anxiety which i disagree. At the time i was not having this feeling in my head, so we’ll see how this new appointment goes.
Were you ever on any blood pressure medication? ace inhibitors? i was on LISINOPRIL for about a year and then stopped because how bad it was making me feel.. then the withdrawal symptoms came very hard.. and lasted for a few months..pain in my fingers, anxiety attacks, rapid heart beats,chest pain, left arm pain and shoulder weakness..
I really feel like that medication destroyed my immune system and i never been the same since.. health wise, not sure if this can connect to these sensations, but it could very well be a side effect of the medication.
Did you ever get a MRI done? i did one but without contrast.. so, not sure if it will really shows any lesions.
Keep us posted with how the neck massage goes, I will write again once i get my Lyme results.
Any comments or suggestions from this forum are very welcome.
Hi, no solution yet.. it has gotten a little better with time.. all my mri results with and with and without contrast came back fine, also did an EEG, and nothing.. neurologist thinks it cab be anxiety, paresthesias or formulation without explaining why or how..
Very disappointed with the way Neurologist handled my case..
At this point.. I’m just hoping that it will go away completely with time.
How about you? Have symptoms changed or got better for you?
Let us know your results tomorrow. Wish you the best.
ron.tc, Just came from the doctor.. MRI is clear no signs of MS or anything, EEG is normal also. He couldnt explain the eye symptoms along with many others but the head shivers/crawling and numbness is most likely neck tension related. I have very stiff neck since i sit on computer on work/freetime a lot, and only recently i have been paying attention to my posture and have started to strech/workout my neck and shoulder area. The symptoms still come and go, but they have became a little bit better over time. Im relieved, but in the otherhand no easy solution from the doctor. Just a doctors referral to any fysiotherapy. But there is no “quick fix”. Also I got Klotriptyl Mite medication for tension headaches. Im sure these syptoms have also created a growing anxiety over the past year, making the symptoms worse, neck more tight, along with other things.
M.Forrel, i’m glad to hear your results came back negative.. i know that when you go to see the doctor you expect an answer, a solution to the symptoms but nothing.. it gets very frustrating.. i still don’t know what the crawling sensation in the scalp comes from.. and i’m not really sure that is due to posture or neck tension.. but like i said.. we just have to give it time,, i been getting these sensations for about 7 months now.. i feel like when i don’t sleep enough or if i have some drinks.. the day after i fell the crawling almost the whole day, more intense. Let’s keep in touch to see how things progress with time. What symptoms are you getting the most lately?
ron.tc , I found it worse also when i dont sleep well.. been waking up restless and early every morning now for a week, getting only about 5 hours of sleep. I dont have any new symptoms and the crawling in the back of my head is now mostly numb/tight feeling on my forehead, not so much at the back, some tight feeling on the left side above ear also, Ive also noticed crawling sensation under my left scapula sometimes..and that also points to a neck problem.. Been exersicing my neck now every day but i dont see any improvement yet.. But i now believe that the head sensations might very likely come from neck. Called “tension headaches”. That and/or anxiety most likely.
I had that crawling feeling in the back of my head for months… One random day I started having that tingling feeling in the back of my head, sometimes it almost felt like someone was behind me running their fingers gently through my hair I tried everything to get rid of it I started with exercise, changed my diet, doctors but nothing worked.. I discovered that drinking alcohol helped alot it made it go away while I was intoxicated which made it so I almost felt “normal” for a few hours… but after months of heavy drinking my blood pressure got bad.. real bad at 28 years old I was running around 170/107 daily and realized I had to quit drinking… I was super depressed and felt like my life was almost over…. my friend found a forum on anxiety and tingling in the head and saved my life…. People all over had these same experiences and said it was anxiety, at that moment it went away I didnt feel anything in my head just by reading those comments but as soon as I thought about it again it came back….. one night I was taking a shower and started crying just from all the stress from trying to get this feeling to go away when I told myself that whenever i feel this tingling feeling I’m gonna think of something else and distract myself…. Booommm it started working, everytime I felt it I distracted myself and thought of something else and before I knew it I didnt ever feel it and didnt ever think about it… 2 years later I’m healthy my blood pressure is normal and I barely ever feel the tingling in my head, I learned that I had severe anxiety and i was able to treat it on my own
I can relate to that so much. I had panic attacks for a couple years and had to be on lexapro for a couple years. I have been med free for over a year and now I’m starting to get numbness on one spot on my back and endless head goosebumps. It makes me feel better others have sensations like this. I’m still going to go to the doc but something tells me they won’t find anything. If you have any more words of wisdom I’d love to hear it.
Thanks for the update MForell, I’ll keep my fingers crossed for you…
I myself have an appointment with a neurologist (again) tomorrow. I don’t expect anything of it but I don’t know what else to do. I still have the crawly head feeling and all of the rest of the symptoms, and recently something new popped up: feeling terribly sleepy all the time. It has got so bad that I even fell asleep while talking to someone on the phone last week…
We’ll see what tomorrow will bring.
I wish you good luck. Please keep us posted.
I had a big relapse a few years ago… I was experiencing a crawling scalp thing for ages, and thought it was down to bad posture, but I then started to get a brain “rush” along with an uncontrolled jerking of muscles lasting a second only, but throughout the day for a few days. Is this something similar?
The thing that gets me, is if you have lesions on MRI, and symptoms of demyelination (lesions with symptoms of MS) then why wont neurologists diagnose MS? The same thing happened to me. Visual evoked potential (eye / brain test) and lumbar puncture are old school diagnostic tools – MRI and clinical findings are the new. Please keep us posted!
@ teresaallen your symptoms, the uncontrolled jerking of muscles, sounds scary, I didn’t experience that (yet). My symptoms are more internal. Unfortunately I would almost say, since it makes it difficult to get taken seriously by doctors.
Do I understand well that you eventually were diagnosed with MS? And it wasn’t recognized at first even though you had lesions? I’m curious how you got diagnosed after all. I don’t know how to get a proper diagnose anymore, maybe I should ask for a Visual evoked potential test? I’m not too fond of the idea of a lumbar puncture, especially since I always react different to all kinds of medical fluids and anaesthetics due to a genetic trait.
Tinklecrawly, I have replied but it has appeared above, look for an incredibly long reply!! Oh, and I just want to mention, I had always had a brain fog, and awful fatigue at times, and just put it down to working too hard, and shift work. I used to need a bed day every now and again, and would tell my husband I needed “a lazy day”.
Just came from the doctor.. MRI is clear no signs of MS or anything, EEG is normal also. He couldnt explain the eye symptoms along with many others but the head shivers/crawling and numbness is most likely neck tension related. I have very stiff neck since i sit on computer on work/freetime a lot, and only recently i have been paying attention to my posture and have started to strech/workout my neck and shoulder area. The symptoms still come and go, but they have became a little bit better over time. Im relieved, but in the otherhand no easy solution from the doctor. Just a doctors referral to fysicaltherapy. But there is no “quick fix”. Also I got Klotriptyl Mite medication for tension headaches. Im sure these syptoms have also created a growing anxiety over the past year, making the symptoms worse, neck more tight, along with other things.
Hi @mforell – I’m so sorry for the delay in response. It can certainly be frustrating to not have some answers, but we are glad that your doctor doesn’t see any signs of MS on the MRI. This is fantastic news. We hope that you do see some great results with your physical therapy sessions! Take it one day at a time and hoping you will get well!!
Hey there, I saw this and have had the same symptoms since 2017. The ER laughed at me and told me it was anxiety as well. I also work behind a desk. I thought it maybe had to do with poor posture….causing fluid build up/ tension in my neck. When I googled the symptoms then in tears and just wanting to give up, the wasn’t anything on here like this. Everyone says MS, anxiety or morgellons😔. We found black toxic mold in our townhome due to AC AND DISHWASHER leaking! It was horrible. We bought test kits and that’s how and why we found it! Property manager was selling and didn’t mention that to us when we had to find a place overnight with my kids! So we jumped into a mess. Anyhow, we moved to a whole other building. My brain fog slowly but surely went away for good. I still have that humming/ electrical shock going down my leg sometimes and sharp pins and needles feeling in back which turns into a painful numbness. If that makes any sense on how to describe it. And the feeling in my scalp but not as bad. I got a new bed because mine itched me every time I sat on it or got close to it. It was right by the ac leak, and got mold on the headboard. I also started taking Benadryl morning and night this past week for another attempt to see if I’m having an allergy to something or sensitive to something. And the scalp sensation has only been a couple of times this week! Not in a day, but a week! The reason I’m including this info is maybe we can see what we have encountered in common? Mold? Any previous surgery’s? I broke my patella in 2006 and have metal hardware in it? I noticed two of us work behind a desk? I’ve had epidurals with all three of my kids? Anything else that may be different? I am determined to find out what this is. I had two ER trips last year and just gave up. I got into it with the Dr. he came back and got serious and did his job eventually but it’s not ok. When I was at my worst I had suicide thoughts and I do not believe in it, nor have I ever had those in my life! Running a fever every other week. First time I went to ER, my carbon dioxide levels were up and I had fluid behind my ears? I don’t know, I know it’s an essay but just throwing my experiences out there In hopes we can one day, hopefully soon…find a cure or explanation!
Hi lynnamanda, thanks for sharing your story and your suggestions. I’m sorry you also have to endure these awful symptoms. I think that by sharing what we have in common is the only way to find out what is bothering us, since doctors didn’t bring me any answers till now.
I myself did get anaesthetics several times before I developed these symptoms, some at the dentists. By now I know that I lack an enzyme called cholinesterase which is needed to break down a compound called articaine which is used frequently in dental practices (under different brand names, one of them is Septanest). It leads to numerous serious complaints in my case, and the crawling sensation is possibly a long term one of them. There is little info available on this, oddly enough since this genetic mutation is quite common.
I find your idea of mould intoxication interesting and will order a test kit myself. I live in an old monument with mould in the cellar so this could be a lead.
Considering the carbondioxide: I constantly have the feeling of being out of breath, and I recently discovered that when I artificially hyperventilate my symptoms subside significantly! I did a blood gas check at my GP’s but it showed a saturation of almost 100%, really strange. It seems as if the oxygen doesn’t get where it should go. Any idea what could be at play here?
@tinklecrawly, regarding your feeling of being out of breath: I had that sensation a lot during the past year. It started after weight gain and a prolonged period of being sedentary.
During the pre-op exam of outpatient surgery last January, my nurse remarked that when she listened to my lungs, she heard a sound similar to rales that suggested I was a shallow breather. She advised that I make a point of taking deep breaths whenever I think of it. I also noticed that when I make regular trips to the gym to ride the seated elliptical–a task that makes me breathe hard–I no longer have those out-of-breath moments at home. Now after months of more activity and some weight loss, I still don’t have that breathless feeling. Hope things improve for you.–Kim, moderator
Thanks Kim for your suggestions, though I think I’m not a shallow breather during the day. Even though I feel miserable most of the time I ride my bicycle a lot and stay active in general through gardening and chopping wood. Besides that I’m a trainer in breathing techniques;-) That’s how I came to the idea of experimenting with intentional hyperventilation. However; even though I’m knowledgable on the subject I can’t explain the effect it has on my particular symptoms.
The last few days I have increased my cycling efforts considerably by taking more hilly routes and increasing the length of my tours with as a result that my overall condition is improving steadily and many of my neurological symptoms are diminishing. I feel I am on to something here and will keep going and see where it leads to. It’s not easy though; I regularly feel like I will drop of my bike and never get up again;-s. As soon I am home again I feel great though, till bedtime, so it is definitely worth the anguish.
I hope I’m not thriving on cortisol, with the inevitable crash on the horizon, but I’m happy to take the risk. We’ll see where it goes…
I have dealt with what I thought was MS for 7yrs now. The crawling sensation on scalp n face enuff to make me crazy…I have researched like crazy for 6yrs now because got nothing but put in a mental ward by local hospital….n then released by them cause didnt need be there. What I have figured out is that I am hypersensitive to mold. 3x n 7 years n 2 different homes large amounts of airborne mold have caused most all of these symptoms. I am one of 25percent of population whose body does not filter out mold or its mycotoxins thus the extreme fatigue…constant low grade fevers…out of breath at times n wheezing…and of course the intense crawling sensations are all due to mold. The problem is mold is everywhere in our environment and in homes. Getting away from it is hard to do…but most important is to remove as much as possible from your home and belongings. I am on disability due to a bad spinal fusion and have nothing but time on my hands so I have become OCD with making the fevers and the crawling sensations go away. Some days I have felt like my nerves can feel every hair falling out of my scalp or my sinuses and I did research parasites and morgellons along with mold for all these years. I am currently taking nutritional n herbal supplements and have purchased some pricey clean air machines for my home. I am doing better fevers have gone down to occassionally rather then everyday. Fatigue has faded tremendously and the crawling is on a comes n goes basis rather then a daily make me crazy one. I have struggled for years and have been to all kinds of doctors n psychiatrists to no avail. I have spent tons of money trying to find the right answers to help myself but have so much knowledge on parasites…mold…and morgellons that I could open my own business and answer 99percent of everyones questions without Google’s help lol. I had an anuerism behind my left eye when we had 80k spores of aspergillius penicillin on our home and then got a fungal infection in my hands diggin in dirt while planting flowers and then the crawling sensations began. I should write a book on what this has done to my life in last 7 years it would be a real page turner. I tried an antipsychotic medicine after talkin to my primary care doctor n found out it was used for people with nervous tics but prescribed by psychiatrist more then medical doctors. It did work almost immediately and worked well by getting rid of the crawling sensations but I knew in my heart it was only covering them up and that I still didnt know what caused them…thus the research began. If I can help anyone besides myself with all this research I have done then please feel free to email me. I survived that anuerism n 2 vehicle accidents for a reason and I think god wants me help people who feel like I did n still do in some ways but am getting better everyday.
I have dealt with same thing off n on over past 7 years…it feels like hairs on head stand straight up n move all over…makes me crazy. Selsum blue shampoo I was told helps but have use daily. I used it and did help for awhile but then I switched to using arm n hammer soap/shampoo I get more relief from it but still at times it will happen..
I tried anxiety meds they did nothing for it at all. I added a couple drops lemon essential oil to my shampooer b4 I put on scalp this helps me a lot. I use a sea salt n kelp spray by Not your Mothers it’s called beach babe spray…n when all else fails aloe vera after sun gel rubbed on spots helps me a lot….I believe this is some kind of fungus so any antifungals work for awhile til it gets used to em then switch it up…I take all kinds antifungal supplements n have had no open sores or anything but the scalp n face movements for awhile now…pimizoid is an antipsychotic n works on nervous system for people with nervous tics….this worked for me almost immediately but again have stop it for awhile n restart due to fact works awhile then it doesnt. Doctors thought I had a nervous tic….I hope any of this helps you out some…I know how it can make u feel.