what can i do about neuropathy at night
 

Hello:
When I sleep my hands and feet get numb and my hands feel like they are swollen but when I look at them ,they are not.
Lately, the numbness has started spreading up my legs and up my arms and half of my face is numb. I have trouble sleeping because of this.
I told neuro and he said " are you sure you're not waking up from the pins and needles because the feeling of them swollen would not wake you up"
I think it does.
I would like to know if there is anything OTC or natural I can take for this.
Thank you

Hello podpeople
 

Welcome to Neuro Talk. I too have PN. Has your doctor given you any kind of medication? I ask this, as there is some real help out there for PN. I use a number of different therapies, such as a compounded medication you rub in. this eases the pins and needles. Numbness remains, but it isn't as painful. There are also lidoderm patches, which help with the more painful areas.
Your B12 levels should be checked too. I have taken this for a year now with some other suppliments, and over time this PN has gotten better. Not gone, better.....
Please look up the kind of doctor called a physiatrist. My particular doctor specializes in pain first, but then treats the "whole" person and thinks outside the box. There is a great deal of empathy from her too which goes a long way toward feeling better.
Let me know what you have tried to date. Also if you need a referral, don't hesitate to ask your primary care physician for both a neurologist, and a pain specialist, Maybe a Physiatrist..... Don't give up. There are things that help. Being awake at night is no fun. When I have trouble sleeping, I am given klonopin. I don't take this often. I hope have have said some things that will give you some ideas. Be good to yourself. ginnie

Hi Ginnie:
Thank you for answering. Neuro has not given me any medication. He wants me to see a hematologist.
My vit b12 was 374. My vit D was at 8 last year and now I got it up to 33.
Is the compounded medication you are taking by prescription?

Hi!

Ginnie has given you great advice!

I just wanted to say that in my opinion even though your b12 is within normal ranges it is low, especially for someone who has PN. I keep mine way above ranges, mine was 2,000 last time however, that number does NOT tell us how much of it is ACTIVE B12 only what is in the blood serum.

Hi
I too have major symptoms that occur the minute I lay down at night, all started about 20 months post-op for Thoracic Outlet Syndrome (1st surgery complications resulted in 2 further surgeries, in the hospital for almost 1 month and lots of issues since (now at about 30 months) ....if I have done too much that day its awful.

My symptoms are like yours numbness in legs, arms and yes on the left side of my face even that swollen feeling.......along with these I also am light headed and nauseous and feel very fatigued and almost flu like?

Have recently gone to a neurologist, he has run blood work, had brain & cervical MRI will get results and have EMG done also.......Not sure I made the right choice in the Doctor but will here what he has to say, I may have to do like Ginnie said & find a Physiarist. He even mentioned a sleep study and I see no point as I do sleep well, I just wake up with the pain.

My question to others that might read this is....Has anyone had this occur after complications from a surgery, especially when there seems to have recurrence at a surgical site that then seems to have pain spread to other parts of their body? I feel so strongly about this but I have not had any straight answers from other doctors that I have seen since all this began!!
And then I find that most people think because I look OK that how can I possibly be ill???

Would appreciate any thoughts from others

That's still a bit low (See MrsD's Vitamin B12 Sticky thread); over 400 would be better.

Doc

I was sleeping perfectly fine (I thought), but I would get symptoms similar to those described here (waking with numb extremeties and flu-like symptoms). I got the sleep study at the urging of my spouse. I now sleep with a cpap, and on a wedge. I still have PN, but no longer wake up numb and feeling sick.

You might ask the second question on Reflex Sympathetic Dystrophy (RSD and CRPS)

Doc

Hi Podpeople
 

Your doctor is not helping you. He is sending you to someone else and has offered nothing in the way of help. More testing isn't going to help the immediate problems. See a Physiatrist. Ask your Primary care doctor for a referal. Hemotologist is not the doc. of choice for most PN.
I have a PC lesson here in a bit, but if you want me to list the ingredients in my compounded medication, I can do that later today. This can be given to you by your Primary, along with lidoderms patches. Maybe these two can take the edge off until you see a Pain specialist, or someone who knows what they are doing. Your neuro, should have been able to prescribe something for you. I have no Idea why he shuffled you to someone else. I will be in touch. ginnie:hug:

Hi Dr. Smith and Stacy
I have been taking 2500 MCG /day of vit.b 12 but only for past month( not suggested by neuro but because I read on this board about importance of b12).
Hi Ginny
Yes I would like to have the ingredients for the medication.Thank You so much.
I think the reason he is sending me to a hematologist is because in one of the blood tests it said polyclonal gammopathy.
I also thought it weird that I have to see a hematologist.

Post-surgical PN
 

Yes, ChloeCasey, I have had this--or something pretty similar! In 2007 I had a thoracotomy for a benign neuroma (schwannoma). Afterward I developed mononeuropathy at the site of the incision. Finally got Rx from a pain doctor for Nortriptyline, which helped quite a bit--I stopped the Nortriptyline after about a year because the pain was tolerable. But then about six months ago I started getting PN symptoms--one foot, then leg, then other foot, then hands/arms, even face. Officially diagnosed as "idiopathic." The neurologist said there's no connection with the post-surgical nerve damage and nerve tumor (which was ALSO "idiopathic). But I can't help wondering, and my thoracic surgeon thinks there might be a connection. Now I'm getting relief (and pretty good sleep) from combination of Nortriptyline and Gabapentin, but I'm worried about the future. It's good (in a bad way, if you know what I mean) to learn that someone else has had this experience.

Hi pod people
 

Here is the list of this compounded med. It works pretty good too....
Keta/Clon/gaba/imp/meffen/tetra (1) 10%.

Just show this to your doctor and he will know what this is. It does cut the pain. It was not covered by my insurance.:(ginnie

Chaucerfan

Curious to know , did you have prior surgery that caused the Neuroma or did this just develop..... I really think my situation could be a Neuroma forming as a result of 3 surgeries I had and all the complications that have occurred since.

I have done so much research that sometimes scar tissue/neuroma formation can occur when nerves heal...I really believe mine did this at the incision site (there is alot of sensitivity/pain) since I had 3 surgeries (10 days apart), had MRSA in Hospital and then developed MONO 2 months post surgery......my whole system got messed up?!!

Will see what the Neuro has to say .....as far as the surgeon and any other doctor I have seen, they have either said there is no connection or just don't want to go against the surgeon, etc. I don't have a medical degree however I have a lifetime knowing myself and I see that it certainly could have a connection.....never had any of these "post op issues" prior to surgeries.

Look forward to anything that you find out in your situation

I guess our situations ARE different because my benign tumor came first -- for unknown reasons; then the incision to remove it, which went in between my ribs, damaged a DIFFERENT nerve and caused the neuropathy.

You certainly have had more than one human being's share of problems -- three surgeries in a short time, then MRSA, then mono! Yikes!

But I am like you in wondering how these things can be totally unrelated. I mean, the nerve tumor was basically overproduction of myelin. And now this mysteriously caused neuropathy seems to be (in part) demyelinating. I have an appointment in early October with a PN specialist at the same hospital as the thoracic surgeon who removed the nerve tumor. Maybe they could put their heads together? And maybe another user of this board will have had a similar experience. Have you considered starting a new thread that explicitly refers to the surgery / neuroma connection?

Hi Ginnie:
Thank you for the information. I will show it to the Dr.and see if he gives me a prescription.

I'm guessing ketamine, clonidine, gabapentin, and mefenamic acid, but the imp & tetra have me stumped.

Doc

Thanks so much for your response & Yes that sounds like something I may do.

Like you, I believe that there likely was damage to Other nerves especially with the potential of encountering nerves 3 times that are so sensitive when they are stretched, etc.

In fact when they went in the 3rd time they prepared me for having a Thoracotomy as I had to have the 2nd & 3rd surgeries for "Chylous Lymph Leaks" and when the 2nd surgery did not resolve the problem they thought that the leak could be in the Thoracic Duct however, the leak was ligated thru the same surgical site previously done. I understand there is greater chance for nerve damage and more pain because of the whole incision/rib access when a Thoracotomy is done.

I had phrenic nerve damage with elevated diaphragm which did not resolve till 20 months post op, Long thoracic nerve damage which resolved more quickly and lastly, Horner's Syndrome which has not resolved and is permanent (Droopy eyelid, pupil will not dilate on surgical side and I don't sweat on surgical side either. To me, all of this and my other symptoms along the way points to nerve damage/neuroma?/PN for sure.

This is why I believe that it is pretty certain that what is going on now has to be a progression of the nerve damage and likely PN. It is just way too coincidental. Because my surgeries were out of state and not wanting to return there I just may have to find a PN specialist close to home if I don't get answers from the Neuro.

chloecasey

The most common cause of night- time
Paresthesias is low blood sugars.
So attending to low carb meals especially
Dinner with a protein snack before bed
May help. Pre-diabetes actually begins
With episodes of low blood sugars.

The next culprit can be neck compression
From disc or other cervical abnormalities.

I am on an iPhone on vacation and
Cannot go into further detail at this
Time, sorry.

They checked me for diabetes including the ac1 and they are OK.
I have neuropathy during daytime too( pins and needles and numb) but it gets much worse at night. My feet feel like there is something on them .

A1c and fasting numbers are not accurate for checking what your blood sugar is doing on a daily basis if you are not full blown diabetic.

I was told by doctors I was fine.

On my own I bought a meter. I was not fine. I was prediabetic and fully on my way to a nightmare. I am so glad I took matters into my own hands. Doctors don't care until it is too late.

The ONLY way to know how food is affecting your blood is to use a meter 1 hour after eating and 2 hours after eating. At 1 hour is the highest peak and at 2 hours it should be back down. If you eat 1 cup of white rice and you check 1 hour after first bite and the number is above 150 then I would be concerned. Nerve damage begins at 150. And while a doctor will say you are ok, truth is you are NOT. Normal numbers should not reach 150 and up after a meal.

My pn is worse at night. As with everything, even a cold, it is always worse at night. sucks

My husband is diabetic so I have been checking my blood for years but I will check again.
Thanks for the information.

Oh that is good!!!

So many people, myself included, are told by doctors we are fine due to A1c or fasting. We are so disillusioned by doctors believing they are gods.

I remind myself before every doctor appointment, I am the only one in that room that cares the most about MY health. He works for me. :)

Numbness and tingling occur with
The lows in blood sugar. The nerves
Are starving then. Reactive hypoglycemia
Comes as a pre-diabetic state and is
Called insulin resistance also.

Making some small dietary adjustments
often helps many with PN symptoms and
Can help prevent permanent damage.

In Feb 2012, i had a 2-hour glucose test and my number on the 2nd hour was 72. MrsD said that I may not be considered as a reactive hypoglycemic yet but she explained that reactive hypos can be on its way to being pre-diabetic. I have always been on the skinny side, so i thought i was safe (with no family history to back me up) but just one year after, my BG is elevated enough to be considered as pre-diabetic. Mrs. D hits it on the spot!!!

Well, please "predict" that my PN will get better. If that happens, i will come see you a give you my personal hug :hug: :)

So, if... "on its way to being pre-diabetic" is "pre-pre-diabetic",
would "not considered reactive hypoglycemic yet" be "pre-pre-pre-diabetic"??? :Hum: :D

Doc

Hi doc. smith
 

Yep that's what the script is. I just didn't know how to spell them all!!!!! thank you. ginnie:hug:

Hi Pod
 

Doc smith wrote out the whole words for the compounded medication on this thread. Yes is it a script, and my insurance won't cover it. ginnie:hug:

I highly recommend finding out about their appeal procedures. If you have your insurance through an employer, you can also ask the insurance broker how to appeal. One time, an insurance broker went to bat for me with the insurance company and got something approved that had previously been denied. You might also call a few compounding pharmacies in your area to get a quote for the medication and see what it would cost out-of-pocket. If you find it does help, that may be useful in writing an appeal.

https://origin.bankrate.com/brm/news.../20020619a.asp

I hate that dealing with crap from insurance companies comes at times when I least feel like dealing with it.