Facial Neuropathy

[Zuzu798]

Here we go again, another flare,left side this time over the forehead &eye. Very painful to heat,cold&touch. Any advice welcome pls?

[Frustrated2]

I’m so sorry I know how painful that is I’ve been dealing with that since 11/2017.

Mine got so bad and originated in the back of my head to the left side.

I couldn’t lay flat not on my left side when it all started. I would get shooting pains through my eyes cross my cheek bones (Trigeminal neuralgia) and ended up having spilt screen vision.

I say a Retina Specialist and she’s the first person that told me it could be Behcet’s. I did some eye drops to help calm the muscle of the eye down I did have uveitis at that point but luckily no damage to the eye. She suggested neurologist and rheumatologist and got me going in the right direction.

I am very light sensitive and now wear amber tinted polarized sunglasses. It helps but took along time to get use to what could be my life as boy do people stare when you go into a store @ evening time and have them on 😂.

I still have issues dry eyes, random blurry vision my depth, peripheral vision I’ve is not the same as it was before I am not driving because my balance and vision and I am easily confused.

I see a neurologist and he ended up putting me on Trileptal for it. It helped make the pain more tolerable over time. My dose has had to increase to 900mg twice a day and I still get them but it’s tolerable.

My neurologist is now looking at sending me to get a nerve block/cortisone shot in hopes of some relief for a longer amount of time.

This all comes in waves my flares have developed a pattern I get head, stomach, private’s, mouth repeat 🥴

I am currently on 2 other medications for the Behcet’s (Plaquenil and Colchicine) this seems to be helping.

We all know steroids help but my doctors only will use them as bursts none will put me on them for maintenance. I understand why and agree we need to find what really works and keep going until we find the right combo of medications.

Hope this helps some for you or at least let’s you know you’re not alone.

Take care..

[Zuzu798 in reply to Frustrated2]

Thank you xx

[Jaynep in reply to Frustrated2]

I had bad neuro problems with the disease I had high dose of steroids and azathioprine..came of the steroids slowly and continue the azathioprine and it has helped a lot x

[Zuzu798 in reply to Jaynep]

Thank You Jaynep

[Frustrated2 in reply to Jaynep]

Jaynep~ that’s interesting my doctor started me on the Plaquenil(Hydroxychloroquine) decided to try that first before the azathiiprine trying to do the older medications as I had dry eyes/arthritis symptoms as well.

Did you have eye problems? My left eye still bothers me.

Were you ever on Hydroxychloroquine or colchicine before this?

Have you had any side effects?

How long did it take to start noticing it was working?

[Jaynep in reply to Frustrated2]

Hiya I was pretty bad when I got put on high dose steroids and colchincine first..I was having horrific headaches sore dry eyes bad skin lesions ulcers but it affected my brain the worse my speech started slurring my balance went and I couldn't remember something I'd done 5 minutes before..brain scan showed lots of white matter lesions more so round the optical part..they thought ms but after further testing it was neurological behcets disease..so put straight on aizathioprine..then things started to improve..I had speech therapy and physio to get my balance better and judge gaps like doorways etc as i would and still do sometimes just walk straight in to things..I occasionally have trouble with memory balance and speech when I'm stressed or having a flare but hardly ever have headaches now and I've been doing okish for 4 years other than the extreme fatigue..but now I've had autoimmune hepatitis and it's been horrific..I think I'm starting to come out the other end now..if I have to leave my azathioprine for a while when my liver levels are really bad everything starts to come back with a vengeance x

[Frustrated2 in reply to Jaynep]

Jaynep~

thank you this is so interesting I wasn’t to the degree you were I’m so sorry you had to go through it.. I know it was very hard for my family to watch and understand but they were very empathetic and supportive. I am very blessed for all of the support.

I had episodes that were bad and not like me and that was scary.. I know when my vision had the split screen and I couldn’t see letters/numbers and light sensitivity balance, memory issues or forgetting things mid sentence and not making sense when I’m talking- yet think I am 🙄

My neuropathy was so painful I couldn’t lay flat or on my left side for months! It was so painful I felt miserable and I couldn’t find any relief so it was just learn to deal. I wasn’t sleeping. I was just thankful I have a high pain tolerance and I went through this 4 years prior but it was on the right side so I new what to expect. I just didn’t want pain medication I wanted to find out what it was and why it keeps happening (at that point I was always being diagnosed with shingles, then when I say the eye specialist she suggested Behcet’s saying you can’t have them multiple times and all these other symptoms I had)

There is so many questions I have for you about your liver..

Do you eat sugar or a lot of carbohydrates?

Detox’s baths when your liver is off?

(Epsom salts- 2 cups Baking soda 1/4-1/2cup) soak warm/hot bath) 10-15 minutes make sure you drink a lot of water.

Warm-Hot fresh lemon water:

.joyfulhealthyeats.com/4-det...

[Jaynep in reply to Frustrated2]

Ahh its horrible when people are looking at you in a way that you're not making any sense but to yourself you are..I worked in a call centre taking calls which were monitored and they were the first to make me go to the doctor..they took me home and they told me my speech was very slurred and I was repeating myself to customers..my family had been trying to tell me but I didnt think they were right but once my boss spoke to me I knew something wasn't right..i find diarys and post it notes now from when I was really ill and I can't remember any of what's in there..now my daughter who is 32 has been having symptoms hers are more the neuropathy like yourself and she has crazy episodes where she becomes very obsessive and fatigued..its been awful seeing her like that and they've diagnosed sjogrens which I was also diagnosed with..shes decided she doesn't want to start a family as autoimmune diseases have hit my two children and one is showing signs too..my man passed away at 60 due to lupus and my dad has rheumatoid arthritis which he has very bad....ahh my liver..I do eat some sugar and carbs but not a lot..I don't seem to have much appetite at all I've lost a few stone in weight ..I will try some of you're suggestions though thank you very much xx

[Frustrated2 in reply to Jaynep]

Jaynep the sugar low carbohydrate thing was really suggestions I received from my doctors. My Gp and gastrointestinal doctor wrote a book about it. He’s published several books

This information comes out of his Lyon’s Lifestyle.

He actually suggested it to my son as he has a hital hernia/acid reflux. He said it will help take away his acid reflux.

lyonsmedicalnews.com/contact/

Look on here for the books

He’s published. He’s brilliant!!

He’s the doctor that read Joanne Zeis’s book and said how great and informative it was as well as it sealed the deal that I had the disease..

[RayRay121]

Cymbalta has help my nuero a ton. It is expensive though

[Zuzu798 in reply to RayRay121]

Thank you I will ask my Specialist about this