AnonymousNovember 20, 2009 at 3:30 pm
Good afternoon folks,
I am looking for any info about facial involvement. My upper lip went numb this morning. Through the course of the day i have recovered feeling for a couple of hours, and the numbness has returned. Upper lip, right side.
I do have sleep apnea and use a CPAP machine. I have never experienced numbness from the mask before, but it is possible that a facial nerve became compacted by pressure from the mask. It has never happened before, and I would have thought that after the nerve decompressed, it would not get numb again, like if your arm “goes to sleep”. After the decompression, pins and needles, everything gets back to normal.
This has not been like that. no pins and needles, just numbness. I am not drooling and I still have complete control eating and talking etc. Just numb.
I have also had the return of the cussed “cluster headaches” today. it feels like I have a railroad spike driven through my eye. Curiously, the same side as the lip thing.
I have recently started working again. I know I am doing too many hours and too much stress. It is only short term, as soon as they hire a “full-timer” I will be down to 15 hours a week.
Just wondering if anyone else had experienced numbness in the facial area.
AnonymousNovember 20, 2009 at 6:41 pm
For reference, like you, I also have a chronic progressive case of CIDP that has been pretty refractory to many treatment variations. Although slowly progressive, my asymetric CIDP variant has dealt me one very severe, acute exacerbation that started four years ago, and took nearly one year to regain a partial recovery from. I am 47 years old and have been on full SSDI disability since 2006. Thankfully, I was approved on first application. Overall, my deficits are about 65% motor 35% sensory.
I have two facial symptoms all the time: the first is constant double vision from 6th cranial nerve lesions from CIDP. These nerves control eye movements. If you look straight at me, you can see my eyes are “crossed” The second is minor lip numbness.
However, I definitely encounter a marked facial symptom increase during downturns when the disease is more active. The subtle lip numbness amplifies markedly, and climbs up the cheeks, and down the chin. Upon “recovery” it will resolve to current baseline. Additionally, I will get eyelid droop, typically in only one eye, as well as a worsening of double vision deviation.
The lip and facial numbness is a deep numbness akin to dental novacaine-type anesthetic – it is definitely not a “pins and needles” feeling.
I have been told that about 10 – 20% of CIDP patients encounter cranial nerve demyelination.
AnonymousNovember 20, 2009 at 6:42 pm
Do go to your GP and start the basic rounds to first ELIMINATE any cardio issues. It really would be wise to check that possibility off ANY lists. It mite not even be CIDP caused at all….or not.
This is like a ‘possible cancer’ diagnosis? Don’t panic until it’s been checked out from A-Z. While it’s it’s hard not to panic? Save your energy for all the testing that likely will be done. Take a good look at your cholesterol levels and if they and your BP #’s are high? It’s more likely cardio than CIDP related..tho maybe, in some rare cases the CIDP can affect some autonomic systems.
Nearly all the cardio tests I’d gone thru were due toa vision problem I’d have and still get occasionally were non or not too invasive. I didn’t come out w/any definitive diagnosis? But I suspect that for me?, it was IG product and infusion rate related- as the vision issues only happened after infusions. Since I’ve changed how, where and when I get my IG? There have been very few issues. TIA’s were suspected in my instance, but there were no other symptoms other than the vision and they happen rarely now.
So, call your GP now if you can and set up an appt for next week or the week following – I don’t know about you? But I hate having to go to the ER!
Keep calm and try and note everything that you ate, did, didn’t do, etc. that could have contributed to what’s going on.
In the meantime? Keep stress to a minimum. We CIDP’ers don’t take to stress well and you don’t need more to worry about.
Be the cool guy you are and it’ll work out for sure.
November 20, 2009 at 11:03 pm
Sorry things are going so badly for you as of late. Is there any possibility it could be fatigue from the added hours? How about a minor bout of Bell’s Palsey? Check out info on trigeminal neuralgia. It is an inflamatory process of the trigeminal nerve. Symptoms can range from dibilitating facial pain to numbness in the lips to the jaw area.
You mention the return of your headaches, Kevin’s too have returned, always Oct to March- April. Sinus related? C spine misalignment? Virus? He has been out of school for 4 days with this migrane, it makes him puke and he has to be in the dark. We go to neuro Dec 11th, I am asking for mri of spine/brain to see if spinal manipulation might be helpful to alleviate headaches. What are your thoughts on that have you ever considered it?
I hope you get answers soon.
Dawn Kevies mom
AnonymousNovember 21, 2009 at 1:54 am
You read my posting about getting a biopsy done to confim their hunch about CIDP.
Anyway, I have facial involvement and cluster migraines/headaches.
My lips, go numb. I also have pain in my cheeks.
(this happens intermittently, and I can never predict it)
The cluster migraines/headaches are very painful.
They are usually in the back of my head and cause me to want to hit my head on something to relieve the pressure from within.
*I don’t, but thats what it makes me want to do*
I’ve had MRI’s, CT’s, etc.. which I’m sure you have as well.
So, I know its not my brain, or my spine.
I wish I knew a treatment for the pain and numbness, but I’m not being treated at all.
If you have a sensory greater than motor component your CIDP can be harder to treat.
My only thought would be to bring up these symptoms to the neuro, and possibly do something with medications to see if an increased dosage causes the sx’s to go away.
Also, a migraine prevention medication (probably) won’t help with cluster migraines.
I take topamax which prevents regular migraines very well, but it will not prevent those attacks.
AnonymousNovember 21, 2009 at 2:18 am
I’ve got numb spots all over, including my face. My ear canals are numb, my lips (and yes, I do drool and spit — so attractive!), places on my cheeks and chin. The rest of my face is tingling. What’s also fun is when I itch and can’t find the right place to scratch.
As others have said, it’s good to ensure there’s nothing else going on, but damage to nerves in the face or anywhere else is not unknown in CIDP.
AnonymousNovember 22, 2009 at 10:40 am
I posted originally on Friday. I tried my best to rest the day away. Saturday I went in to work and did paperwork only. I had a good nap Sat afternoon. I did a little paperwork between 7pm and 9pm. I slept well last night. It is 1030 sun am. Lip numbness is back, maybe 50% of what it was on Fri. It disappeared totally on Sat.
I acknowledge the fact that I have caused this by over-stress on my system by both too much work and work related stresses. I hope I can reverse it by resting and allowing recovery.
Once again, I thought I could do more than I can. I pushed too hard, tried to do too many things I used to do.
Thank you all for your replies. If anyone else wishes to chime in, I’ll listen
PS Cluster headaches gone
AnonymousNovember 22, 2009 at 1:26 pm
I had lip numbness also.
Just want to let you know mine was caused from blockages in the carotid arteries. I waited to long and did not have it checked thinking it would clear up because some days it was less numb than others.
I had a TIA and ended up in the ER and admitted to hospital.
By the time they did surgery the right side was 98% blocked, the doctor was able to get the blockage and put a patch in the artery to make it a little bigger.
The right side did not function at all. Doctor said it did something very rare, by a miracle the artery had rerouted itself. Not sure how this happened but have heard of it with the heart.
Don’t mean to scare you but let you know other things could be going on.
Good luck to you.
AnonymousNovember 22, 2009 at 5:48 pm
I have facial numbness/lips. Like now. My carotid arteries are fine-just had all the tests 3 months ago.
Before diagnoses/IVIG started the numbness so bad I’d drool at night-tiredness.
Its certainly a weird feeling.
Starting to have my eye lids flutter and it hurts.
I’d trade for the numbness all the time if the problem with breathing went away. I have trouble getting a decent full breath. I have to concentrate and do it. It gets scary.
AnonymousNovember 23, 2009 at 3:36 am
I can sympathize about the breathing. It’s very frustrating, although I’ve finally gotten to the point where it doesn’t scare me — usually 😮 . Swallowing can be a bit of a nightmare, too. Those two things, along with the sensory problems, have never improved although I’ve had improvement in the motor nerves.
AnonymousNovember 24, 2009 at 12:12 am
Yes, the breathing wants to do its own thing.When I’m really tired it gets worse and the summer heat is a biggie for it too.That means most of the time….??
I ALWAYS use a straw for drinking as its hard to keep my lips on the glass rim.
So many times hit my mouth/teeth with the glass or splashed the contents on myself.With cold weather here gotta remember to use Chapstick-my numb lips can’t tell me they’re raw.
AnonymousNovember 24, 2009 at 4:51 am
Dick I have had facial numbness off and on since this whole mess started. It tends to come on at the end of the day, when I am tired or have overdone things, and it ranges from feeling just cold to numb-like-the-dentist. I mentioned this in my most recent visit to the neuro and he is testing me again for myasthenia gravis as the numbess does have myasthenic qualities… I really don’t think that I have MG but certainly my face acts like it.
I’ll let you know if the test turns out positive but I’ve just sort of learned to live with it… perhaps you will be fortunate and keep your taste buds… most of mine have faded away. I don’t plan to take any medications regardless unless it starts effecting my breathing more than it is. At the moment I also have to concentrate to breathe at times (something fundamentally wrong about that) and other autonomic processes aren’t so automatic anymore either. :rolleyes:
I hope this remains a symptom of stress and over-doing things for you and not a permanent addition. It is a pretty obvious clue for me when my face droops and my eyes sink in that it’s time to take a long nap. 🙂
AnonymousNovember 24, 2009 at 8:06 pm
I’m not surprised to say that I, too, have episodes of numbness on my face.
Sometimes my lip…but no drooling. Sometimes a cheek or both cheeks but no sagging. No pins and needles, just numb.
I dont have that right now and havent had for a while. It came and went and hoping it’s stayed away this time.
Hopefully it is just the added stress and extra stuff you are doing. How crappy is it that we cant do anything ‘extra’ without more symptoms.
Take good care and I hope you and your family have a wonderful Thanksgiving !
AnonymousNovember 25, 2009 at 1:09 pm
I have had facial numbness from the beginning of my CIDP and when I am at the end of my cycle, the week before my IVig it is always worse. Sometimes I am numb up to my eyes, but it is mostly the chin, lower lip, and even my tongue and teeth. I also find it is exacerbated when I am tired. In the past year or so I have also developed a ptosis of the right eye that also occurs as above. Very annoying. No explanation or diagnosis from my neuro but we continue to explore solutions.
All the best to you and Happy Thanksgiving.
AnonymousNovember 26, 2009 at 9:46 am
Facial numbness was the first fast changing symptom I had exerienced.
Besides the aching legs and numbness climbing my legs, one day two Novembers ago, Bang, my left side of my face, from under the eye socket down to the center of my chin got really numb. An hour later it seemed to somewhat subside. the next month it did it again and I called my dr after hours and we went ahead with the brain MRI and Spinal tap, After doing antibiotics and ruling out bells palsey. Diagnosis came more clear the following Spring.
I had over the years had a drooping eyelid. My optometrist noticed it and said this sometimes happens and there was a surgery for it.
After stricken with this last two bouts of facial issues, I kinda looked like I had a stroke.
One year later I went on IVIG which was last Jan. the eyelid has improved and my smile is more even. I do full IVIG loads per month and have severe inflammation still accompanied by serious pain. If I don’t take oxycontin, I am about screaming in pain. I can run and walk as long as my pain is controlled.
I get bad headaches at the base of my head from time to time. Its is PARALYZING pain I get in my lower extremities.
Still fighting to work. I have a safety sensitive position, last week my work told me I can’t have any narcotics so that has stirred up the situation. I am back to wicked Pain once again.
Every Oct, Nov and Dec, it seems my symtoms increase. 3 years in a row. I am very frustrated as I am sure many of us are.
I hope things improve for you. It was nice to hear your back to work if even for limited hours. It does wonders for you to be able to work. Good Luck Dick.
AnonymousNovember 27, 2009 at 7:32 pm
Thanks for the replies. The numbness in my lip (right side upper) comes and goes. It is still annoying that I have a “new” numb spot. I was feeling better about “holding my own” for a year or so. The cluster headache has gone away thankfully.
I will be scheduling an appointment with my neuro, and the numbness will be top of the list.
AnonymousNovember 30, 2009 at 3:55 pm
I use to log on as Cindy H many years ago and finally have come home to the site for those who understand and share my trials and those darn symptoms. I have had facial drop/w drooling and eye blurring plus those darn back of the head migrains through the left eye for years. Thank you to all who answered this thread and breath Dick it is prob. the stress. This forum has evolved soooo much. At first the Docs told me the eye involvement was not CIDP. I can tell you all have much better neuros than i do. Sooo sorry to the Dr.s not ment to bash ya i just stilll after 15 years can’t find a close by neuro to help me who truly under stands. Perhaps i should have started a new thread.
AnonymousDecember 3, 2009 at 9:03 pm
Yes, I have had facial (cranial nerve) involvement since my first attack. My eyes were affected (double vision, ptosis) and I had/have jaw weakness with chewing food, weakness with swallowing, weakness with smiling for too long (I can’t hold the smile) and numb/icy spots on my chin and cheek. I have found though (thank goodness) these probs have lessened over the years and now only play up when I overdo things. One side of my face gets ‘droopy’ too if I am fatigued.
My voice also fades away to a whisper sometimes – but not as bad as during my first attack – when I could hardly talk at all!
Oh, and one more thing – I get neuralgia type pain in my face which can be quite painful at times.
The old saying: If you don’t use it you lose it, well that doesn’t apply to me – as if I use it (too much anyway) – I lose it!
AnonymousDecember 11, 2009 at 7:52 pm
I went to neuro today and he checked me out. He wants to do an MRI to check for a tumor or any other “pinching” of a facial nerve. He is also doing some blood work to dismiss some other situations.
Presuming these come back clean, it leaves me with CIDP getting worse. The numbness has returned and is now nearly every day. It has expended to include my eye area.
I completely believe that the part/time job I took has induced enough work and stress to have an adverse effect. I am cutting hours back to 20-25 to see if that makes a difference. I’ll let you all know what the tests say.
AnonymousDecember 11, 2009 at 9:28 pm
ANOTHER round on the medical roller-coaster! Just what you don’t need!
That said? Get it all over with and hopefully they will either detect something truly worth an ‘Ah-Ha’ moment? Or find something simple!
When you say your eyes are affected? Could you elaborate? I went thru ‘eye’ issues and they were the scariest of all!. Losing sense of ‘sense’ and of muscle, well..they could be ‘dealt’ with to a degree? EYES? tho? A truly spookier issue. They went away for the most part but once in a while come back to, I guess? Remind me to be ‘careful’ or more so than I’ve been in ways I can’t comprehend. I suspect you know what I’m meaning here. But sadly? It’s good to know that another has/is this issue.
Keep persuing the medical tests. Tho they aren’t fun? For the most part, the majority of them aren’t invasive, at least. They just take up heaps of TIME!
My heart is with you on this one for sure!
December 11, 2009 at 11:33 pm
I’m relieved that you went to the neuro. Cutting work hours is a good idea since you seem to know intuitively that maybe stress is playing a part here.
You’re in a hard row to hoe right now and I sure hope everything starts going more smoothly for you.
AnonymousDecember 13, 2009 at 3:25 am
The facial involvement is sensory at this time. The side of my face feels like when you get hit in the face, fat lip, etc. Only the numbness stays. I do not have vision problems, other than the fact that I am getting older…..
I am not glucose intolerant as far as I know. That is part of the tests they intend to run. There are several diabetic neuropathy issues, so far I do not have any. My neuropathy began almost completely sensory and has progressed to sensory plus motor.
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