Hi- New Member with some type of Neuropathy
 

Hi everyone, I posted this in the introductions forum, but thought I'd post it here as well. My symptoms seem to lead to some type of neuropathy, possibly autonomic? My doctor can't make a diagnosis.

I guess my main question is- has anyone heard of someone contacting these symptoms from an anti-depressant? Because it all started for me when I took a med called Viibryd.

Here's my original post:

Hi everyone, I just stumbled upon this site today and thought I would give this a shot.

I'll try to make this as short as possible. My Doctors and the Neurologist I've seen so far haven't been able to give me many answers. ALl of my symptoms started when I began taking an anti-depressant called Viibryd. It's a fairly new drug. Right away I began to feel numbness all over my body, but stupidly thought that could be a normal side effect. After about two and a half weeks I stopped the drug cold turkey, as it was making me very depressed.

That was early June. For months I thought the drug was still somehow affecting me, but now I've basically ruled that out. My symptoms are numbness, mental foggyness, fatigue, sexual dysfuntion, impotence, occasionally blurred vision*, increased urination*.

** These were the two symptoms that lead me to think it was autonomic neuropathy, although I know nothing about this, and hadn't even heard of it until a few days ago.

I was on the Viibryd for OCD/Anxiety, and the really strange thing is, my anxiety is GONE! Not decreased, but gone. The ocs symptoms have gone way down, but have increased a bit over the past month. Hunger and thirst is way down as well.

I've been told there is demilynation in my nerves, and had a Spinal Tap to test for CIDP, which I was told I do not have, as my protein count was normal.


This is all very new to me, and frankly I'm terrified. No one seems to be able to tell my what is happening or why it happened. I think my neurologist is doubtful that the Viibryd could have caused this, but there was nothing else. The symptoms started as soon as I began the drug.

Any help or advice is greatly appreciated.

Thank you

John

Welcome to NeuroTalk, John.

Sounds frightening. I can't search around for you tonight, but I will do so first thing tomorrow.

In the meantime, can you tell us if you had a vaccine at that time, or what other drugs you take for other problems?
Were you sick at all? Virus, stomach flu?

Have you been tested for diabetes? Had a HbA1C test done?
Do you know your fasting glucose level?

There are drugs that may cause neuropathies. But this one is really new, and when that is the case it can take YEARS for reports to be made and collected.

This site does this:
http://www.drugcite.com/?q=Viibryd
You can click on any category to expand on it. (they are not available on separate addresses to link to here).

That site is a collection of FDA reports of side effects. Not all doctors by any means report either, so it is somewhat understating what might actually be happening.

Let me look around for you tomorrow morning. It is possible I won't find much however, but I will try.

Whoops I meant to say contracting* a disease, not contacting!

Thank you for your reply, Mrs.D, I really appreciate it.

To answer your question, I was not sick at the time, nor did I have any vaccines. I think that's what puzzled my neurologist too, becuase he asked me the same questions.

"Have you been tested for diabetes? Had a HbA1C test done?
Do you know your fasting glucose level?"

It's funny you should mention that becuase I was going to ask a question on that subject. I have not been tested for diabetes, or had an HbA1C done, or know my fasting glucose level. I don't know much about the subject...

But I've always just assumed I had low blood sugar, becuase I would become very irrtiable/angry when I went too long without eating, my OCD/symptoms would get much worse, and would eventually get headaches. I knew that wasn't normal, but had always just managed it. The really strange thing about this whole ordeal is how it more or less cured my OCD and anxiety, and I suspected that it may have something to do with the blood sugar levels/issues I had before. Or maybe not, I could just be grasping at straws, but with the Doctors not being able to diagnose, I've felt the need to start thinking outside the box.

The reason I ask is that your symptoms all are typical of patients with some degree of impaired glucose metabolism.

Until you can get that tested out, try eliminating sugar and starchy carbs from your diet, and just do lean protein, fruits in moderation and veggies. Many people here find it helps minor PN type symptoms very quickly.

I looked up this drug in several places, and there is no data and lingering effects. There is a caution about stopping the medication suddenly. Also using it with OTC products with an MAOI warning, like cough syrups with DM etc, or other RX drugs with MAOI warnings.

You don't have to have frank diabetes to start with impaired glucose. Often low blood sugars precede diabetes for a while, and lows affect the nerves, by starving them. Swinging with high sugar will stimulate LOWS as you bottom out. This up and down is quite damaging to the body in general, and causes inflammatory problems too, because high insulin favors Cox-2 cytokine expression.

If you are using other drugs (including non-psychiatric ones) you can PM me for privacy and I'll look them up. Some drugs impair nutrient utilization, and absorption from the GI tract. ( you may have to post a short time longer before the PM
function opens up for you to use--this is for new members.)

I'm sure it was the Viibryd. Whether it just triggered somehting, or what exactly it did, I have no idea. I did however stop it cold turkey after it made me very depressed. The first day I stopped it, the numbness increased by a large margin.

I'm currently not on any medication, other than a 6 day supply of steroids (medrol) that I started a few days ago. Haven't noticed any changes so far.

Could you tell me what kind of tests I would need to ask for in order to determine my glucose level? Is it just the tests you mentioned in your first post? Honestly this is all greek to me. I'm trying to make sense out of everything.

Should I stay off of artifical sweetners too?


My Doc had said there was demilynization in my nerves, and that it jumps around to different places in my body. (I had some nerve conduction tests done)

But since this started, there have been a few times that my symptoms went away for a period of days, and I had been wondering if it could be diet related, or if it was just the natural course of the disease.


Anyway, thank you SO much for taking the time to respond. It's a big help

Glucose tolerance test, preferably a 4 hr one.
This would show lows, at the 3-4 hr mark. Shorter tests do not.
Doctors often use a 2hr, which will not typically reveal hypoglycemia. The 2 hr only shows highs for diabetics.

HbA1C shows if your diet is high in carbs and you are having spikes after eating. It is an average of long term sugar utilization.

Fasting glucose is done to screen for pre-diabetes and diabetes.
In people with impaired glucose utilization, it may show lows at first and as years pass then it creeps up slowly to over 100.
This process is also called insulin resistance.

If you have had periods of remission of symptoms, then definitely something is causing that, and diet is the most common cause. So if you clean up your diet, you may see improvements. They will be slow but will sustain, if that is your issue.

In my opinion, the BEST way to check diabetes, is to buy a meter.

Many studies have been done on the doctors waiting for a fasting blood test to reach 100 before a dr will diagnose diabetes.

The fact is, only a meter will catch it fast enough before symptoms develope.

My dr did the fasting blood test and my result was a 90 and he and another dr both said I did not have it, however, I did my own research and knew that my symptoms pointed to diabetes, including my neuropathy, which they said was from hypo thyroid. (which could be, who knows)

Anyway, I bought a meter from walmart, and yes, my fasting number in the mornings was 90 to 98 when I did a test of 1 cup of white rice and checked my blood 1 hr afterwards it was 180!!! That is a high number, while not high enough for medication, anything over 140 can begin to affect organs in your body and cause nueropathy. And who knows how long I have been having spiking numbers. But at this point, I consider myself prediabetic.

I now have a meter and check frequently and keep my numbers under 140 and I feel better.

All that to say, if you really wanna know your TRUE reactions to the food you eat, a meter is your best friend, and you can get one at walmart for $15 and strips are cheap if you get RELI brand.

Read EVERYTHING in this forum and other places. Try many things. It was reading about benfotiamine here that led me to take it and its been a miracle for me.

good luck

p.s. a meter is cheaper to buy than taking all their blood tests. And if you find your number is high, then you can go to a doctor. But it is much cheaper to buy a meter and find out yourself. IMO

Hi kgc
 

Welcome to Neuro Talk. This is a good place to stumble into. I did the same thing and never left. Actually your post caught my eye. You are the second to post about Viibryd in conjunction with PN of some kind. I don't know exactly where the other post is. The question was the same however. Mrs.D is correct, sometimes it takes years to discover a medication that causes that kind of side effect. I would not take the medication anylonger if I had any doubt. Report it to your doctor, and the drug manufacturer for sure. If I can find the other post, I will tap back to you. Sorry this has happened to you. NT will be here to support you. ginnie:hug:

Thanks you everyone for your responses. I'll make sure to bring it up to my neurologist, if I ever actually get in to see them again, that is. I'm currently in the process of getting started at a bigger hospital/teaching hospital for a second opinion. So far I'm not overly impressed the the office I've been going to, and not just because they haven't made a diagnosis.

Just over the past few days I'm noticing more muscle weakness and seeing weird colors. Pretty scary stuff. The symptoms seem to indicate some type of neuropathy, but I think what's throwing the docs is the lack of illness or vaccine preceding it.

I think you should get some B12 testing, and Vit D too while you're at it. Optic neuritis can be one sign of low B12.

People vary in how they present with low B12 issues.
And that can be confusing.

This is our B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

I went out and bought a meter (brand is FreeStyle). This may seem like a silly question, but when should I take the test? When you your "fasting" number, does that just mean before you eat anything in the morning? I know next to nothing on the subject... Should I test myself before and after I eat to see if there is a big jump?

I do not have blood sugar problems at all, but my doctor talked to me about eating very low sugar and carbs for the nerves. The right supplements too of course. For my dysautonomia.

I have a meter and it has REALLY helped me learn what foods raise the glucose level. The level doesn't get too high and goes down quickly, but the nerves like to be kept at a level glucose number so the meter is great. Great tool, just like a bp machine.

It is good to test when you wake up. I don't do that much now, but good to know what your usual level is.

Good to test one hour and two hours after eating. Especially if carbs are eaten.

I like one hour because that shows how high it gets and not just how it is two hours later.

After you test for a while, you probably won't have to as often unless you do have blood sugar problems.

Thanks for your reply, Sally. I was actually tested for dysautonomia, and am still awaiting the results.

I'm going to try to make sense of the device tomorrow and see if I can figure out how it works, after that I'll post the numbers here.

This is a really scary thing to go through (as I'm sure you all know quite well), so I really appreciate everyone posting in the thread and helping out. You're very nice people!

My personal research has shown me some things that are not necessarily main stream dr thinking, so of course do your own research and/or follow a dr advice.

I believe when your number hits 140 and above, then damage can begin to your body/organs. So for me, my goal is to stay below 140.

I tested like crazy when I first got my meter, but as I learn what I can and can not eat I don't test as often, but the first 2 months, ALL the time.

I keep a daily record of all my numbers, what I eat, meds, and supplements. I tested every morning before eating anything, which is your fasting number. When you buy a meter, the number can be within 10 pts up or down, especially cheaper ones, but I simply go by what the meter says.

The most important number is 1 HR pm, which is post meal or 1 hour after eating. You start the hour at the minute you BEGIN to eat a meal or snack. 1 Hr PM will tell you what your PEAK is, which is most important. Then again you check at 2 hr PM. At the 1hr mark it should be its highest, at the 2hr pm it should be coming back down to normal. If it is not coming back down, could be insulin resistant.

Fasting number should always be below 99 to a doctor but for me, I want it below 95.

HOWEVER. There is some research that shows if you are doing a very low carb diet, where you are in ketosis, your numbers will be 10 pts higher and you can deduct that. I am doing very low carb so if my fasting number is 100 I deduct 10 from that.

Also, the glucose tolerence test the dr does is a sugar drink, but you can test yourself by eating 1 cup of cooked white rice and then test 1 hr pm. Mine was scary, but at least I learned from it.

This is my personal opinion.

good luck

p.s. if you do find you have high numbers, flaxseed in your diet is amazing at helping to stablize your sugar. Not to mention all the other benefits. And yes, it is scary, but knowledge is power, so learn all you can so that you can be in control of the situation instead of it controlling you. :)

I have never heard of the brand you bought, hopefully it does not require coding and it is a simple meter. It was confusing learning how to do it, if you need help just ask. :)

Stacy, I stay lower than 120 for my nerves. Like you, I learned what the foods are that make numbers go higher. Cutting those foods does the trick for me. Keeps number even.

Meters are so good for everyone.

Yes, the PEAK is why I test at one hour.

My fasting is usually 75-80, I test once in a while, but it is always good.

I drink apple cider vinegar to help with kidney stones, but it is great for keeping glucose level also. I eat cinnamon for the same reason.

Exercise keeps the glucose level down, so important to do that. I do all I can even though my levels are always good. Most people don't realize how high it can get after eating some foods.

wow Sally, 120 is low. My peaks are usually 125 to 135 depending if I splurge on carbs or not. But even keeping it in that range is a VERY low carb diet.

You must not have any insulin problems at all to be able to stay in those ranges. i wish I could.

My goal is to stay below 140. Staying below 120 would be next to impossable. My fasting is always around 90 to 100. I can't seem to ever get it below 90 :(

But I am thankful I am controlling it.

I have no insulin problems at all. I keep simple carbs low for sure since they are not needed. I DO drink Cola when I have nausea- that happens with Dysautonomia. I LOVE Cola but I only drink a bit when I need it. I drink cola with real sugar, not corn fructose.

No rice, and VERY few of my favorite....... french fries. About 8 fries once a week.

My carbs come in good sources like oatmeal in my daily smoothie and I love to eat it with cinnamon also. My sugar is coconut palm sugar. Carbs in fruits and veggies, I get a lot of that. I have an amazing smoothie every day.

Hubby makes corn tortillas, tostadas once a week. When we fry shrimp or okra, it is with corn meal. Carbs there. I do get plenty. The brain has to have them. I just don't eat the simple and junky ones.

Oh, I don't eat bread. That isn't needed. No dessert.

I DO make a dark choc. candy with coconut manna and coconut sugar (2 tsp) and it is SOOOO GOOD and healthful!!! My hubby and I love food, love to eat out and cook wonderful things.

Sure helped to cut back on the sugar and carbs. Good for the nerves, brain. At the same time, eating lots of nutrient dense foods and supplements.

Oh, last night, hubby made crab legs and salad with apples and blue cheese. YUM. He is a great cook. I help him sometimes, but since I feel better, I usually clean up after him which is wonderful. For three years, I couldn't do that. :D He works all day so I am happy I can do more now.
We had lettuce wraps tonight with chicken, mushrooms, water chesnut and sauce. LOVE that.

I am so glad you are controlling your levels. Great job!:)

Wish I could eat that way, but even fruit raises my numbers. The carbs I do eat must be eaten with protien and complex carbs, I don't drink ANYTHING but water, but that was a choice I made years ago, thankfully it's not difficult for me. So many people say they hate water or can't stand it. I drink close to a gallon a day..or less.

Even cooked oatmeal will skyrocket my numbers.

:)It is good you know that. It is potatoes and rice for me. Oatmeal works fine thankfully since it is good for me and I love it.

The thing I always think of is that doctors that take your fasting and even the A1 C test still don't learn how your body reacts daily. Would be nice if everyone could see numbers get high after one hour on some carbs they eat and think are fine.

People can spike or get low numbers and never know. Their nerves suffer and they have no idea when they feel all is fine with all testing. Oh well.

SO TRUE.

I was visiting in Florida a couple weeks ago and for fun I check my mom's and her husbands numbers 1 hr after eating. Mind you, both are in their 70's and are always at the dr for something. Both have been checked for diabetes, both fasting and A1C and were good, moms was 5.1.

Anyway, her husbands number: 301

wow! I never saw my meter blink before!! So I looked it up and everything i read said SEE A DOCTOR.

My moms was 198. Not good.

They bought a meter.

He went to a dr while I was still there and of course the dr didnt believe it and wont until HE is the one to diagnose it. :rolleyes

The dietician told him to eat fruit, cereal, etc. in small amounts.

WHAT???

When this guy eats fruit his number soars.

I have no faith in doctors. I simply use them. :(

WOW, how about that! Would be great if everyone had one meter for the family just to test and find out the problem foods. Just like a bp monitor, they are great tools!

I just use some docs and try to help them learn. But thankfully I do have some good doctors also that told me to eat very low sugar etc. If it weren't for them, I would not ever wonder about french fries, sushi with the white rice thinking that was a good food and other foods. I thought my diet was really good, but I am so happy it is even better now.

Quick update- I went to try to set up the meter today and realized it did not come with strips, so I'll pick some up today hopefully be able to set it up without confusion.


I have another question that is semi-realted to all this, does anyone know how they determine if you have demyelination in your nerves? Is there an offical test? Or are is just assumed when your feeling numb and your nerves are not responding?

I only ask because evey Doctor I speak to indicates to me that it would very strange to have these symptoms be the result of an anti-depressant, yet here I am. I was told by one Dr. that too much seretonin can make you feel numb, and for a while I just assumed that's what the problem was, until I went to the neruologist and suggested CIDP (that was later ruled out). But I saw a post somehwere on this forum mentioning that seretonin levels can take months to reset. This could also explain my lack of anxiety/OCD.

Is that even remotley possible? It's hard to get useful info from the doctors, (initially they insisted that this was just all in my head). I'm not sure if I'm grasping for straws with my "too much seretonin" theory or not.

If your meter is a non coding meter, there should be no set up or anything, it's pretty simple once you get the strips, though make sure you get exactly the right strips for that meter.

I can not offer anything on your other concerns but maybe Mrs.D will come along. :)

I am sorry, but your drug is too new to know much about.
It takes years of post-marketing reports to discover how drugs REALLY work. Taking it only for 2 weeks is not very long however, as well.

Demyelination is usually diagnosed with nerve conduction study tests.
Myelin is the insulation on the axons of nerves. It is not present on sensory nerves as a rule.

That's what I meant actually, it was a nerve conduction test. As for the serotonin, I just meant generally, like if it was theoretically possible for levels to take time to come back to normal.

Also, just checked my meter for the first time, I haven't eaten since around 1- my number was 101, assuming I did it right. Is that a normal number?

yes, 101 is ok but it is most effective to know what your morning fasting number is and what your number is exactly 1 hr starting after your first bite of food.

Your 1hr PM is the number to check, and keeping track of the time is important too.

Any other number doesn't really tell as much

Ok, so today I went about 6 hours without eating, tested myself and a number of 109. I checked an hour later and it was 186.. Is that high? If so, what should I do?


I'm on a steroid (medrol) at the moment, it helps a bit, but it just seems like a short term solution. I can feel my muscles getting weaker, and I don't get to my new neurologist until January. Any advice?

What did you eat before the 2nd test?

Yes, that is high. Very high in my opinion. Anything over 140 and it can affect organs and nerves in your body.

Going 6 hours without eating is NOT good. Diabetics are told to eat frequently, 6 small meals/snacks a day. NOT big meals.

Matter of fact, not eating can cause spikes in glucose. Stress, food, lots of things factor into it.

So do not think you are doing yourself a favor by not eating.

And 189 is a number that would and did scare the crap outta me, but I want my numbers normal, not just controlled. But whatever you ate was clearly bad, if you did eat. At 300 my meter flashes and says go to a dr imediately. At 200 I get a warning it is high.

I had turkey-loaf (just meatloaf with ground turkey instead of beef), and some peas mixed with mashed potatoes.

The thing is, prior to all of this starting, I could not go long without eating and my OCD symptoms would get much worse if I hadn't been on a normal eating schedule. But aside from any OCD symptoms, I would just get ravenous.

Now, it's like all sensation is dulled, and I don't really get as hungry, and have no OCD symptoms. So I don't know if the numbers would have been higher or lower prior to all of these issues starting.

Frankly, I'm happy to hear that is a hugh number, at least it's a step towards a diagnosis maybe? Having no idea what's happening to me, or why, is quite stressful.

You definately need to talk to a doctor about diabetes and your numbers.

Potatoes, rice, white bread, sugar, all those simple carbs cause your numbers to spike.

I would consider testing 1 hour after every meal, so you know what cause you to spike, and tell the doctor.

Consistant spikes like 189 is considered diabetic, and will cause harm to your body. But you can control it with what and how you eat, or at least you might be able to.

Ok, and forgive me if this seems like a dumb question, but what is the connection between diabetes and neuropathy? Is that known? Can the neuropathy improve if I manage the numbers?

You need to research diabetes.

Quite frankly, all your symptoms point to it.

Yes, nueropathy can be caused by diabetes. It is the first thing I knew to check out when i began to have tingling, burning, etc in my feet. Matter of fact diabetes is the first thing I thought of when I realized I had neuropathy starting in my feet.

Google and research diabetes. I googled "my glucose number is 189 is that bad" and got lots of info on it.

And yes, if you are diabetic you can improve symptoms with diet change and/or medication. Diet is key. LOW CARB

Ok, will do. I apologize for my ignorance on the subject, but I hadn't even considered it an option until I started posting here. None of my doctors mentioned it, or suggested it as a factor.

No apology needed, everyone has to start somewhere.

I am passionate about it, since I am going through it. And the doctors did not tell me either, I had to research on my own and find out.

Read and learn as much as you can, don't just trust a doctor.

Knowledge is power.

p.s. no such thing as a dumb question, in my opinion :)

I am not diabetic, very good levels and I eat carefully, but I love this site...

http://www.dlife.com/


There is so much information here, also great recipes. I get the newsletter by email.

There is a forum also.

The potatoes might have been bad for you. They spike glucose like rice and other simple carbs. I eat very few potatoes in my diet, no rice, no bread. I love oatmeal with a tsp of coconut palm sugar and cinnamon. You can test to see how that works for you. We do need carbs, but they need to be full of fiber and nutrients.

It is good you are testing. I agree, eat small meals to keep a level glucose level.

You can learn about great snacks and meals on the dilife site. Lots of great recipes online also. It is a challenge, but you can do it. Then your nerves will have a good chance to be more healthy. The brain also.

Learn to use your meter. Live by the numbers. FOR ME, anything over 140 is bad because I do not want ANYTHING higher than that as it can cause nueropathy and damage to organs.

Also, FLAXSEED. It has really helped level my glucose.

My dr did not catch my diabetes because my fasting number was 90 and doctors do not consider diabetes until a fasting number reaches 100 which sadly, is too late. By the time most people reach 100 they have been diabetic for awhile, possably a long time.

But regardless what your fasting number is, if you get a reading of 189 after a meal, even a doctor has to admit that is wayyyyy to high.

Well I just called my Dr., and was told that 186 was "not that high", and that the steroids I'm on can raise your levels. They suggested I go to the ER if I don't improve.

I"m not sure if I want to take such a drastic step but I seem to be getting worse by the day.

Maybe another doctor can help more. Each one is very different.