Burning pain in head - can't even cry

[tic chick]

hello hwo ,

i used to post quite regularly in the tourette syndrome forum, but it's been quiet for quite awhile now.

i remember a person who thought they had tourette syndrome. it turned out to be something different, something called "benign fasciculation syndrome". here are a couple articles on it. one article lists possible causes of fasciculations that are serious diseases. the other discusses benign fasciculation syndrome itself.

i think getting a sleep study is great because fatigue can cause fasciculations. also, asking the neuro about the other list of serious diseases that cause fasciculations can help rule those out. i hope this helps.

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BFS is rare, and the exact cause is still unknown. One theory is that BFS is a response to a viral infection.

Fasciculations themselves can have a range of causes, including the use of certain substances or medications, especially allergy drugs.

Drugs that may trigger fasciculations include:

beta-agonists
chlorpheniramine (Chlorphen SR)
dimenhydrinate (Dramamine)
diphenhydramine (Benadryl)
nortriptyline (Pamelor)
methylphenidate (Ritalin)
pseudoephedrine (Sudafed)

These twitches will usually subside when the person stops taking the medication and do not cause BFS.

Muscle twitches may also be due to trauma and injury or may be symptoms of anxiety or depression. They can sometimes be linked to other stress-related symptoms such as irritable bowel syndrome, heartburn, and headache.

Some people who lack certain minerals, such as magnesium or calcium, may also develop muscle twitches.

Fasciculations may also be linked to other routine factors such as:

strenuous exercise
drinking alcohol
smoking cigarettes
fatigue
caffeine intake

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Less commonly, fasciculations may be the sign of something more serious. These may include illnesses or conditions that affect the nervous system, either directly or indirectly.

Among them:

Amyotrophic lateral sclerosis (also known as Lou Gehrig's disease) and other motor neuron diseases
Spinal muscle atrophy, a genetic disorder of the spinal nerves
Peripheral nerve damage
Spinal injury
Paraneoplastic syndrome, a cancer-related nerve disorder
Schwartz-Jampel syndrome, a genetic nervous system disorder
Moersch-Woltmann syndrome (also referred to as "stiff person syndrome")
Rabies

thank you for sharing and reading,
jeannie (tic chick)

[Virginia]

HWO, so glad to see you back. We have been concerned. Thankfully you have an appointment with an ALS specialist. Will be very interested to hear what he has to say. Good for you for staying on top of this.

I thought what Tic Chic had to post was something you might want to think about checking out if ALS is hopefully ruled out.

Good luck to you on this next appointment. Will want to hear from you.

[agate]

Thank you for posting an update, HWO. Having to go without sleep as you've been doing can cause a lot of problems. I hope some of yours will go away after you've had adequate sleep.

Everyone I know who's had a sleep study done has had to go to a special lab for an overnight stay but there are ways of doing the study at home. Apparently a doctor has to prescribe it.

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Hope you don't have ALS--and hope that the sleep study will provide some answers for you.

[Earth Mother 2 Angels]

((((((HWO)))))) ~

I'm so sorry for all that you're enduring. I hope the apnea machine gives you some helpful information, because I agree with others that some of your symptoms correlate with sleep apnea. Sleep deprivation can cause many medical problems.

Have you had blood tests to check magnesium, calcium, potassium, sodium, various vitamin levels? Thyroid test? Have you had a PET scan of your entire body? Or even a CAT scan to rule out any pulmonary problems? Or intestinal issues? Have you had an EEG to rule out seizures? How is your blood pressure? Do you take it a few times a day?

Is there any possibility that you could get a referral from Kaiser to see a specialist at Stanford?

I'm sending you healing, positive energy and prayers.

Love & Light,



Rose

[hootswithowls]

Hello Kind People!!

Thank you so much for your support!! It is 7 years later. In short, I recovered in 2019 and had another terrible flare in 2025 - same symptoms and worse.

Rose was right - it was indeed Vitamin B12 deficiency - specifically Pernicious Anemia. I just wrote another post all about this in a new thread. It was extremely tough to figure out because my B12 was always spuriously high. I clearly have a rare form of an already rare disease - Pernicious Anemia, about half as prevalent as MS. 150 people per 100K have PA.

Thank you all for your support. I am injecting B12 EOD, and I am doing so much better!! I am back here to close the loop on my mysterious and very long (32 years) of undxed neuro symptoms for the sake of posterity who are searching this forum for answers, the way I have done in the past. But maybe it will be easier for them with AI. Maybe it will be AI that is digesting this. Either way, I hope to bring awareness to what happened to me so that others do not have to suffer the way I did with years of undxed symptoms and gas-lighting from the medical establishment.

The important thing is to not rely heavily on B12 serum testing - serum testing is misleading because it does not reflect cell uptake. If neurological symptoms persist, go beyond B12 and get MMA, homocysteine, CBC, blood smear, Intrinsic Factor Antibodies, and Parietal Cell Antibodies testing.

Thank you again, and please read up on B12 and MS. I have recently learned that B12 injections may help MS patients.

Wishing you all the best,

Kathy (aka hootswithowls)