Cymbalta and Neurontin

[CindyLouWho50]

Hello!  Sorry for bothering you here, I did post this question on the Neurology forum and no answers so thought someone here might has a comment.  Has any one heard of or experienced being on Cymbalta and/or Neurontin and where the side effects suddenly became MS like symptoms after being on them for a year? I am on both of the for idiopathic peripheral neuropathy (bad pain in both feet and legs) and just recently had an "attack" of symptoms (which are dizziness, weakness in legs, ataxia, blurry vision, electric shock and stabbing head pain, muscle spasms including the torso around ribs, mental fog and memory issues to name a few).  Did not have any of these symptoms/side effects until 3 weeks a go and they are continuing, some days worse than others. Doctor is exasperated with me, saying I now have too many symptoms. I won't know if it is anything more than the drugs until my EEG and MRI to check for MS or some demylinating disease.  I appreciate you all being here, sorry that you are all going thru some very difficult health issues.  I know I should wait for the test and the results, but am just worried and anxious.  Thank you all - Take Care!

Cindy

[Jilly9]

Hi, I have been Cymbalta for 4 months. I just started to have brain zaps mostly all day, while taking the medicine as prescribed.  I also had a panic attack(which I do not get), and 2 brief episodes of hypomania (which I also have never had). I also had left leg weakness and tingling, tremors, fever, the feeling of something running up and Down my arms, and upper body twitching.  I was also having chest tighness with difficulty breathing.  However, my symptoms began with gastrointestinal upset...diarrhea and nausea... Leading me to think I had a stomach bug. I talked to my psych doc and told me to go to the er for medical evaluation for possible low sodium and have my liver enzymes checked. The labs came back negative, so the doc  decided to call in a psych screener. I was appalled, I never had a neuro evaluation and was told I was diagnosed with panic attack. Again, I was humiliated, appalled and angry I was not taken seriously. I was discharged. Any suggestions on how to withdrawl from 120mg to 90 mg?  Thank you.

[CindyLouWho50]

I am so comforted by all the messages I am getting here.  Make me feel not so alone although I am sad that so many of you are having problem, some so much worse than me.  Sho, my Neurologist did do a pre-diagnosis of Small Fiber Neuropathy but in order to get a full diagnosis I would have to go to UCLA which is quite a distance for me.  My EMG was negative for any muscle involvement a year ago.  Going tomorrow for the EEG, which I am not sure what that will show and then the Brain MRI on Wednesday.  I don't imagine I will have any results until much later.  Given my medical history over the years, I don't expect for any conclusive answers.  But just one more part of being hopefully diagnosed.  This morning I feel pretty good, evening/night is my worse times.  I have much to get done for my job today, so have to run (ha ha, limp/stumble) along.  You all take care and I will let you know what I end up finding out if anything.  Hugs - Cindy

[MisterTimC]

I don't have a dx yet, but my first MS type of event occurred after being on 60 mg of Cymbalta for two years. It is so hard to know if there is any cause/effect; maybe just a nasty coincidence - who knows?

Now that I'm into my second MS type of event, I've been reading a lot and have been able to recognize that some of these symptoms were beginning to show up many years ago. And maybe it was what 'appeared' to be depression that prompted my wife to force me to go to a psychiatrist and that's how I got started on Cymbalta. But maybe it was MS all along. Maybe not.

Just to reiterate, it's so hard to know if there is any cause or effect. All we can do is work with our Dr's on what our symptoms are; it looks like a duck, walks like a duck and quacks like a duck, but the Dr's need to do their due-diligence to prove that its not a duck.

So we waddle around like ducks in limboland. (Sorry, but I'm frustrated with the whole process, too.)
  TimC

[shoshin]

For what it's worth, it does sound like you have something more than peripheral neuropathy going on. As Bob says, a lot of the stuff you're experiencing sounds like CNS stuff. You could have something else instead of PN. Or I suppose you could have PN and something else.

I was told that I had idiopathic peripheral neuropathy for six years until I finally went to see a PN specialist because I kept getting worse and the idiopathic thing drove me batty. One thing the PN neuro said to me was that people with idiopathic PN are usually in their fifties and sixties when they get it and have painful small fiber neuropathy. Since that didn't describe me, he thought he could come up with a reason for my problems. A bunch of tests later, I ended up with an MS dx. You might be interested in my journey to dx, which I wrote up in my journal at http://www.medhelp.org/user_journals/show/38044/Pre-diagnosis

Do you have any objective evidence (EMG/NCS or one of the tests for small fiber PN) that you have PN or did they just say that because it seems reasonable and they don't have any other ideas?

I do hope you find some answers.

sho

[CindyLouWho50]

No need for apology Sarah, I am eagerly reading all I can to become more educated and emotionally fortified to be able to advocate for myself.  Bob, you are a fresh breath of reality and I greatly appreciate your input.  I have been reading the medical information on this site and have been learning a lot.  True about the Neurologists having to have a non sympathetic approach or they would go mad.  I have to look at it from a different perspective than just my view of my medical condition.  Hopefully next week will be able to shed some light on the situation. Thank you both for your comments.  Again I am so glad I have found this forum and such enlightened individuals.  Today is a good day!

[Sparkysarah]

To Bob

Thanks for sharing this and I kind of see where you are coming from as over the last 8 months I have read so many horror stories on the forum about neurologists who are very cut and dry and appear uncaring.(but perhaps this is just their coping mechanism?)  I just wonder what happens in training in the States and do they miss out the crucual part of listening and empathy? (OK I hear you say..that is a counsellor's job and maybe that is why I am always plugging it!)

My experience in England over the last 2 years of neurologists has been amazing. My mother-in-law had MND and I cared for her until she died and her consultants were very compassionate and understanding although there was not much else they could do for her. I have seen 5 neurologists (not because I have not got on with them..but more because of being in the drug trial) and have been extremely impressed and every single one had all the qualities I would hope for in a doctor specialising in neurology..including empathy and understanding. They presumably deal with similar caseloads as American neurologists......  I am sure that perhaps I have just been lucky and have seen the NHS at its best but I have never once felt dismissed, not listened to or not understood.  I am also aware that I had a very quick diagnosis within about 6 weeks from start to finish and so from this perspective I have also been fortunate to have not had to be in limboland like so many people.

Anyhow I have been meaning to drop you a line to say how much I appreciate all your posts and the insight that you have shared and the advice given. We are so very lucky to have so many knowledgeable professionals on this forum and your insight is incredibly helpful and enables us to learn more about this wretched condition so many thanks.

Cheers for now

Sarah

PS  Sorry Cindy for slightly digressing from your original question..but neurologists are a frequent cause for discussion!

[COBOB]

Here in the states, I wouldn't expect much sympathy or empathy from many neurologists.  Many of these doctors spend there time working with stroke patients, evaluating brain death on coma patients, or delivering news no one really ever want to receive (MS, ALS, Neoplastic Disease.)  "Touchy feally Docs" stay away from Oncology, Neurology, Neurosurgery, etc.  It is just a reality of medicine here.  Many of these docs are numb, because if they were not, they'd be total train wrecks.  If you spend just a few days in a Neuro ICU, you can figure out why this happens.  I worked with a surgeon one time that told me that "In the medical dictionary, 'Sympathy' was located right between 'Sh_t' and 'Sypilis'."  Then again, this is the same guy that told me "Only surgeons could actually 'see' the problem since they never let intact skin stand between them and a definitive surgical diagnosis."

The reason Cindy "has too many symptoms for Non-diabetic Idiopathic Peripheral Neuropathy" is that it is probably NOT "Non-diabetic Idiopathic Peripheral Neuropathy".
The doctor knows this but doesn't (and really can't for legal purposes) say this.  Ataxia, blurry vision, electric shock and stabbing head pain, muscle spasms including the torso around ribs, mental fog and memory issues are CNS symptoms, not peripheral symptoms.
You need to convince the Dr to look at this from the beginning like a fresh patient.  The MRI is a good thing.  If there are any lesions, it will force the Dr to consider withdrawing the diagnosis of Non-diabetic Idiopathic Peripheral Neuropathy.  The Dr is frustrated, because Cindy's CNS symptoms have blown apart the Drs simple diagnosis.

Bob

[CindyLouWho50]

Thank you for your kind words.  To answer your questions, yes my doctor is a Neurologist and I was surprise that she ordered the MRI so quickly (only had to wait a couple months).  I have been seeing her for non-diabetic idiopathic peripheral neuropathy (severe burning, stabbing and cramping) in both feet and legs.  Now I have had these new symptoms. My recent blood tests came back negative (as usual).  Next week I will have the EEG and MRI so hopefully will have some answers, but I doubt it as no answer for the neuropathy has come thru.  Another morning and much to do.  Trying to get back into good graces with my boss as the last few weeks due to my mental state (mental fog, memories issues and seemingly cognitive issues, pain and coordination issues) I haven't been producing my best work lately.  She is sympathetic but of course the work needs to be done correctly.  Just having to recheck my work over and over.  Please take care and best wishes to you. I can tell that I have found the right place to come for support. Everyone here has been so wonderful!  Hugs - Cindy

[Sparkysarah]

Hi Cindy

Sometimes on the forum if it is busy questions can slip quickly onto the xecond pageand if this happens then it may get overlooked. The best thing to do is just to answer your own question by saying bump and then it will go back up to the top.

Anyhow I am no medic, but think it is unlikely if you have been on the drugs for a while that these are causing your symptoms. If anything it sounds as if you may need to increase the dosage of your neurontin and this is something to discuss with your doctor.

It does not sound as if your doctor is being very sympathetic  by saying you have too many symptoms...this is very unkind and not empathic. The doctor should be taking note and doing what is necessary to alleviate your symptoms and discomfort.  I am wondering how long you have to wait for your MRI and are you under a neurologist? It sounds as if you may have experienced a relapse...but I know that you have not been diagnosed. Is your vision still blurry because if it is I would go back to your doctor and steroids may help.

I jsut wanted to say that it is entirely understandable that you are feeling anxious and worried and this is what anyone would be feeling when faced with unexplained scary symptoms like  you are experiencing.  I really hope you are feeling better soon and I am not able to comment about cymbalta as I do not know the drug but have been on gabepentin (neurontin) for about 8 months.

Take care and do not be put off by your doctor- that is what they are there for...to try and help you and if nothing else treat the symptoms and refer you to the correct specialist.

Love Sarah xxxx

[CindyLouWho50]

Thank you so much, I appreciate your comments. I may just be making too much out of everything.  When I have an "attack" it really seems something is wrong, but then after everything settles down, I doubt the intensity of it all.  Oh well, just very tired tonight (actually very tired all the time).  

Take Care of yourself too!
Cindy

[supermum_ms]

Hi Cindy,

Sorry your having these issues, though i'm not able to offer any insight, i just wanted you to know someone had read your post so you dont feel isolated or ignored. I'm sorry not to be able to offer you anything helpful, have you googled side affects of these drugs?

Good luck with your tests, i hope you get some answers soon!

Cheers.........JJ

[ReginaMorrison]

I too have had stroke like features. I was driving to the store when my face went numb. It was drawing up like a stroke . I pulled over, took aspirin and my blood pressure meds which is Coreg 12.5 mg. I had my son drive me to the hospital. I have been taking Neurontin for nerve pain also.I have read so many side effects of Neurintin/Gabapentin. My memory loss has increased so bad that I am going ot wear a name tag soon.I am irritable, short tempered, cant sleep either. Does anybody else have this problem?Should I stop taking it and risk a seizure too?