Author Topic: Neuropathy in my head  (Read 2088 times)

mom16

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Neuropathy in my head
« on: July 11, 2010, 10:21:08 PM »
Hi,

I already have random pains and burning all over due to peripheral neuropathy, but now I'm getting pains in my head. It's not just a burning sensation on my scalp, but a sharp pain that lasts a few seconds and then goes away (often in specific spots, but it definitely moves around). The only thing is I get those pains several times an hour.

Does this sound familiar to anyone?  Do you think it is just progression of the neuropathy??

Karen
« Last Edit: July 11, 2010, 10:37:36 PM by mom16 »
Primary SJS with small fiber neuropathy.  Plaquenil, Neurontin,  and Cymbalta
Female-46

gphx

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Re: Brain pain
« Reply #1 on: July 11, 2010, 10:47:12 PM »
If the pain is on the surface in the skin that's a good possibility. Similar issues can also crop up if there is a damage to the upper neck area of the spine.

Vasculitis is often a cause of pn in Sjogren's people. Vasculitis can also take place in the brain and causes sporadic symptoms that can be hard to pin down.

If it isn't in the skin I'd have it checked out if it were me. Though it may be harmless it'd be nice to be sure.

Sometimes when I wake up the back of my head is tingling angrily like an arm or leg you've slept on. A couple of times it has felt numb like I was wearing a shower cap but with the sensation of bugs crawling in it. The first time it happened I got all panicked thinking the skin on the back of my head had died during the night or something. I was in a flare those two times and other than the tingling from time to time those symptoms have passed.

Curious if you're experiencing pn symptoms elsewhere as I am or if you're amidst an overall flare.

Not sure what your issue is but I hope it passes soon.

Adding a link to a list of symptoms of vasculitis that can be a result of Sjogren's:
http://www.nhlbi.nih.gov/health/dci/Diseases/vas/vas_signsandsymptoms.html
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

anita

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Re: Neuropathy in my head
« Reply #2 on: July 12, 2010, 07:15:13 AM »
Karen,

I have the same type of sharp, pin-pointed pain (but in different locations) you describes...that only last a few seconds, then comes back again, and again.  Some days it's on/off all day, sometimes, it's just a few times.  My neurologist said he thought it was nerve pain, like from PN.  Being that it doesn't last long, I don't worry about it....but it can get quite annoying.
49 yr old SjS, APS w/strokes, Severe Autonomic Neuropathy, PN, Nephrogenic DI, IgG def., Asthma, Gastroparesis.  Sero-negative w/+ lip biopsy.  Meds: IVIG, Arixtra, Aspirin, Plaquenil, Nitroglycerin, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Florinef, Symbicort, Percocet,

Jack

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Re: Neuropathy in my head
« Reply #3 on: July 12, 2010, 09:44:53 AM »
I also have the scalp pain/tenderness since I was a teenager.  It seems to flare with sharp pains up the side of my temple as well.  I don't think I ever even mentioned it to a dr yet.  I think it's just nerve pain. 

grandma7

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Re: Neuropathy in my head
« Reply #4 on: July 12, 2010, 10:58:15 AM »
Same for me.  pins and needles i call it.  in my arms, then my temple on my face, then my forehead, round and round it goes..........
seeing my dr. tomorrow, but i'm sure he won't have an answer.  neuro surgeon says its from my neck.  i have stenosis and disc degeneration in my cervical spine and other parts.  i think it is neuropathy.

Barbara Elizabeth

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Re: Neuropathy in my head
« Reply #5 on: July 12, 2010, 11:59:18 AM »
I am same as Jack, never mentioned it to anyone, just say my head hurts and that's it

anita

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Re: Neuropathy in my head
« Reply #6 on: July 12, 2010, 02:57:57 PM »
Karen,

Is yours on the scalp?  Maybe it's not the same after all, because mine is not scalp like others mentioned.  Mine is pin-pointed inside the head...and shows up like you said, in different locations.

The pins and needles for me is an annoying "surface" discomfort.  Now I get vibrations deep inside from my waist down my legs, but not painful...again, just annoying.  My neurologist believes it is neuropathy related.

49 yr old SjS, APS w/strokes, Severe Autonomic Neuropathy, PN, Nephrogenic DI, IgG def., Asthma, Gastroparesis.  Sero-negative w/+ lip biopsy.  Meds: IVIG, Arixtra, Aspirin, Plaquenil, Nitroglycerin, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Florinef, Symbicort, Percocet,

mom16

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Re: Neuropathy in my head
« Reply #7 on: July 12, 2010, 03:18:13 PM »

Thank you all for your replies, it sounds like it is attributed to neuropathy.

Anita,

I can feel the annoying tingling, etc. on my scalp, but I can also feel a stronger pain (in different locations) deeper in my head that, yes, only lasts a few seconds. What you described sounds exactly what I feel.  

Also, on a separate note,  I'm thinking I probably don't have the autonomic neuropathy because I don't have any of the symptoms you had mentioned before. My doctor identified the PN as small fiber through a skin biopsy, it continues to spread, but I don't know what to expect beyond that.  In less than two years though I can feel it all over and it bothers my right leg so much I've started to limp (not all the time, but when I'm sitting too long or, ironically, on my feet too long).  So weird.

Karen
« Last Edit: July 12, 2010, 03:25:42 PM by mom16 »
Primary SJS with small fiber neuropathy.  Plaquenil, Neurontin,  and Cymbalta
Female-46

Billydude

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Re: Neuropathy in my head
« Reply #8 on: July 12, 2010, 07:30:03 PM »
As one of my many Sjogrens complications I had a neurologist diagnose me with "cranial neuropathy".   So,  it could be something like that but for sure have it checked out.   Most of us are not doctors.

anita

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Re: Neuropathy in my head
« Reply #9 on: July 12, 2010, 07:38:29 PM »
Billydude,

Where the symptoms of "cranial neuropathy" sharp pin-pointed pains 'inside' the head like Mom16 & I were describing?  I don't know if I have heard of this before.   I'd be interested in hearing what your symptoms were for this type of neuropathy.

Anita
49 yr old SjS, APS w/strokes, Severe Autonomic Neuropathy, PN, Nephrogenic DI, IgG def., Asthma, Gastroparesis.  Sero-negative w/+ lip biopsy.  Meds: IVIG, Arixtra, Aspirin, Plaquenil, Nitroglycerin, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Florinef, Symbicort, Percocet,

Billydude

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Re: Neuropathy in my head
« Reply #10 on: July 13, 2010, 07:55:52 AM »
No not so much that but again everyone has different symptoms and can manifest differently.   Mine was a sort of numbness at the back of the head that would actually cause a sort of vertigo.  I would often describe it as the sensation of seeing stars if you were hit on the back of the head with a bat minus the pain.         
However,   I really do question the diagnosis these days and wonder if its something to do with my spondylosis of the neck.    It wouldn't be the first time to get an arbitrary diagnosis.

navydad

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Re: Neuropathy in my head
« Reply #11 on: July 13, 2010, 09:35:42 AM »
No not so much that but again everyone has different symptoms and can manifest differently.   Mine was a sort of numbness at the back of the head that would actually cause a sort of vertigo.  I would often describe it as the sensation of seeing stars if you were hit on the back of the head with a bat minus the pain.         
However,   I really do question the diagnosis these days and wonder if its something to do with my spondylosis of the neck.    It wouldn't be the first time to get an arbitrary diagnosis.
Billy,, I have spondylosis in the neck too,, but I get the pins and needles ni the head,, they move around,, half the time I;mnot sure if its from PN or from the chronic sinus infections I get ,, I see the ENT on thursday,, he is going to get a ear full,, I told him two weeks ago when he dragged that crap out of my sinuses that he shouldhave cultered it,,, now its worse then ever,,, IDIOTS

Billydude

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Re: Neuropathy in my head
« Reply #12 on: July 14, 2010, 12:36:39 AM »
They really are idiots sometime.   I loose faith more and more every day.    For me its just the random ease they they dispense drugs.   I wish every doc would write on my file in big red letters.   CAREFUL PRESCRIBING MEDS AS PATIENT IS EXTREMELY SENSITIVE.     I spent the afternoon today throwing up and my first prednizone pill that I was prescribed today.

gphx

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Re: Neuropathy in my head
« Reply #13 on: July 14, 2010, 03:16:43 AM »
Navydad, sometimes I seriously wonder if they're trying to kill you. Infections of that magnitude so near the brain are nothing to mess around with. Have you considered getting treatment from an ER or something like that? I took Vicodin today and either the vibration and burning stopped or I'm too out of it to care and I don't care which is true. I don't usually take pain meds because pain helps me notice when something new is wrong but some days they help one forget about all this if only for a little while...
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

navydad

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Re: Neuropathy in my head
« Reply #14 on: July 14, 2010, 07:00:42 AM »
Navydad, sometimes I seriously wonder if they're trying to kill you. Infections of that magnitude so near the brain are nothing to mess around with. Have you considered getting treatment from an ER or something like that? I took Vicodin today and either the vibration and burning stopped or I'm too out of it to care and I don't care which is true. I don't usually take pain meds because pain helps me notice when something new is wrong but some days they help one forget about all this if only for a little while...
I think they are trying to kill me,, my hands are buzzing,, mouth is so dry,, lips burning,, and Irish,, your so right,, Mayo is so wrong,, they are good like you said at some things,, but at others,, well you just get cuaght up in the moment that your at the Mayo clinic and surely they will figure it out,, but less then two months out from there i;m worse,, i;m sicker,, and I almost dont even care anymore,, tired of all the nonsense,, ER rooms are pretty useless,, my co-ordnation is gone,,,, barely walking,, and I am nightly coughing up that gunk,,, I am supposed to see ENT tomorrow,, what a joke,, I can barely walk,, my arms just hang,, I type with numb fingers,, cheek is numb and hurts,, its all such a mess,,, of course all of you here have been through some of the same stuff,,, all the neuro did for me yesterday was give me more ultram,,, whats the use,,