Put on antidepressant for TN, now going through withdrawal hell

After undergoing a successful MVD procedure and struggling with some rather serious and exceptional complications (CSF otorrhea and ongoing hearing loss), I was told by my NS to stop taking my medication ‘cold turkey’.

I was put on Topamax/Topiramate 200mg/daily and Lamotrigine/Lamictal 200mg/daily by my neurologist and, at some point during my TN journey, I was referred to a psychiatrist by my GP, as my first MRI scan did not show any compressions and he thought some CBT and counselling at a local pain clinic would be helpful for me. The psychiatrist diagnosed me with atypical TN, based on the radiologist’s report and taking into account various vague psychological factors relating to my childhood. He prescribed 75mg of Effexor/Venlafaxine as an ‘analgesic’.

I was desperate to get rid of the horrible pain I was experiencing and willing to try anything at this stage, so I took the medication. I had some nasty side effects but persevered. Unfortunately, none of the medication worked and the TN pain continued to get worse. I ended up having the right type of MRI scan (with contrast), seeing a neurosurgeon who spotted various compressions and undergoing MVD, but that’s another story…

The point is: I was put on a strong antidepressant for TN.

And here I am, about 3 weeks post MVD, trying to get off Effexor…

I did my research and found out about the 10% taper method.

I opened up every single capsule, counted the beads and made my first 10% drop.

That’s when the trouble started: withdrawal hell.

I am now experiencing some really bad withdrawal effects: body aches, especially in my arms and legs, bowel issues, nausea, brain zaps, involuntary movements at night, insomnia, nightmares, weepiness… and this on top of the postsurgical pain and pounding headaches I already had…

Question: I read about something called the ‘Prozac bridge’, a cross taper that could help me taper faster and could ease the withdrawal effects.

Has anyone tried this?

I only have 6 weeks of sick leave left before I have to go back to work.
I do realise a slow taper is best, but I simply do not have the time!

And I will also need to wean myself off Lamotrigine and Topamax after this.
Any experiences with withdrawing from these two anticonvulsants?

I will be seeing my neurologist and my neurosurgeon in a couple of weeks from now, but I do need to get on with this process right now.

I am so angry. It is very easy for doctors to prescribe these meds, but when it comes to weaning their patients off them, they provide next to no guidance on how to go about it…

I have bought heaps of supplements in an attempt to get me through this hell: magnesium, multivitamins, vitamin D, vitamin B, evening primrose oil, etc., as well as Gatorade.

Just wanted to hear from others who have gone through the same thing.

Feeling kind of lonely and miserable here!

I was on antidepressants for 20 years. The only way I was able to come off them was to literally shave tiny slivers off them each day and gradually increase the amount over months. It can be an incredible slow process, so I certainly wouldn’t rush it. I tried lots of other approaches and it was hell. Is there any reason why you need to come off them before you return to work? Be kind to yourself. Maybe wait until your 100% after your surgery before you do it? Sounds like you’ve been knocked around! My gp who helped me come off them reassured me that a few more months on them would make no difference. He also agreed that they are some of the hardest drugs to come off. Ever.

1 Like

My sister tried to get off effexor.She was only able to do one tiny ball at a time.She was then put on celexa because the process of taking out the tiny balls was taking way too long.I am in the same boat but am at 150mg effexor-and increasing to see if it works.
No luck so far and i just dread getting off of it later.
Good Luck,You are not alone

1 Like

I know it’s better to do a slow taper.
The main reason why I would like to come off them before I return to work is because I cannot see how I would be able to do the type of work I do (academic writing and teaching) while going through the withdrawal process and suffering these unbearable withdrawal symptoms…
I need to finish my thesis before my scholarship runs out, so I do have a deadline to meet.
I will be seeing my neurologist and my neurosurgeon soon.
Hopefully, they will be able to help me in terms of medication to cope with the withdrawal effects, especially my neurologist.

I am pretty sure your neurologist will be able to help.
Wow-all the best with your thesis.
The things that we need to do on top of our pain.

1 Like

I was diagnosed Atypical Trigeminal Neuralgia after dental work. I was put on Lyrica with 8 kidney infections in one year but more awful side effects. I went up to 200mg. After 12 months my neurologist took me off in one week and put me on Trileptal which I had to quit due to severe rash within one month.
I missed 4 months of work and I $5,000 in medical bills trying to treat the horrible withdrawals. I lost 30 pound the first month. Nausea and anxiety went through the roof.

I had burning skin - arms, head, chest and back for 12 months. I had insomnia for 8 momths and my sleeping did not work. Migraines all the time for 4 months.

Lyrica is the most potent of all the drugs. My neurologist told after 2 months that all my symptoms were caused by anxiety.
He did not believe me that it from withdrawal. Also, he told that I did not have TN. My internist told me my headaches were withdrawal headaches not migraine headaches.
I went to a neurosurgeon at teaching hospital ( Medical Unversity of SC) and he said I did have TRigeminal neuropathic pain from dental injury.
A lot of doctors will prescribe these drugs base on information from pharmaceutical reps and don’t believe women.
Also, they get paid legally from drug company for doing studies on these drugs with patient.

1 Like

Go very slow withdrawing antiseizure or antidepressants.

1 Like

Some people don’t have a problem withdrawing from
Lyrica or other drugs.
You may be one of them. Also, Benadryl over the counter gave me some relief.

I am so sorry that you have gone through so much.Just reading makes me want to cry.Have you found something that works now?

I went into remission for one year. When it came back it wasn’t as bad, mostly annoying. I wa able to work.
I was taking doxepin 25mg at night for sleeping which is an antidepressant that Also worked on pain. My doctor increase it and I notice no pain or a very little for few seconds up to 30 minutes. I now take it 3 times a day, and it only make me sleepy when I lay down at time. If I miss a dose then pain starts but usually about 30 to 60 pain goes away.
I used in the past year : peppermint oil (a lot drops in to carrier oil call sweet almond. When pain start I inhale about 4 times deeply, I use peppermint gum and peppermint life savors.
I have use capciasan cream from Walmart. It helps a lot after using 3 or 4 days in a row. Burns at first and when in shower.
It hard to keep it out eyes. It does work.
I had a compound cream made at special Pharmcy contains
Gabapentin since I can’t take antiseizure drugs. But at present I only use Doxipen and peppermint. I have mild pain off and on during the day but I enjoy my life. Some days no pain at all.

Doxepin will make you sleepy at first but I am not doing the day. Let me know if you want formula for compound cream.
This is a lot better than the first time when I trying to get diagnosis.
Mine was cause by dental work. It came back after teeth cleaning. If you use a oral b electric tooth brush and floss daily you delay having your teeth. Your gum and teeth will be healthy with no cavities I promise. By the way I am 66 year old still working without calling sick a day.

Also I use a sublingual B 12 under tongue which helps nerves heal.

Hi Linda
Thanks for all the info.But most importantly-how well you are doing -wow.
I use the hot pepper cream and b12 .I also have a compound cream with ketamine and baclofen and amitriptyline.

The effexor I am taking does not seem to be working.I might try the doxepin.
Peppermint.Before this thing I could not smell very well.Now everything smells bad.I eat stuff without smelling it now-otherwise just thinking about food makes me sick.
Keep up the good work.Superwoman.

Yes, I remember Lyrica…
Before being put on Topamax, Lamotrigine or Effexor, I used to be on Lyrica, but I felt horrible while on it: heavily sedated, could barely walk and was at a constant loss for words…
Getting off the drug was pure hell.
It took me six weeks and I suffered terrible insomnia and abdominal cramps.
I was on 500mg/daily.
It didn’t do anything for my TN pain either.
Pure poison that one!

I am also taking heaps of vitamin supplements: vitamin B, a multivitamin supplement, vitamin D, zinc, melatonin, fish oil, etc.
I have stopped my intake of all stimulants such as coffee, tea, etc.
My TN pain is gone, but I am still having issues with my ear and ongoing hearing loss, for which I will be seeing an ENT specialist soon.
Still going through withdrawal hell here.
Guess I will just have to sit it out.
No one seems to understand, apart from the people who have been there themselves.

Thank god for this website. I have learn so much from others here. A lot of doctors have never seen a patient with this disease. I always ask the doctors that I seen if they have a patient with this disease. I had to switch neurologist several times. Best to see a neurosurgeon even if you don’t want surgery. They are more familiar.
When I was going through withdrawal from Lyrica, I want to go to a place that could ease my pain - but there is no where to go. After that I not taken any antiseizure drugs orally - have use Gapabentin in a compound with very little side effects.
I believe that Amitriptyline is similar to Doxepin. It had work the best of anything I have tried. They are both tricylic antidepressants. It is use for insomnia, skin rashes or hives, headaches, and pain, in addition depression/anxiety. It was discover in the 70’s

1 Like

You might want to get your B-12 and vitamin D tested to find where your levels are. I take sublingual b 12 from Superior Source and vitamin D 5000iu. Mine are tested
once a year and have improved a lot.
No hearing problem but discomfort - aches and burning.
I have lost some sense of taste off and on. Ok now.
It is odd that people don’t have the same symptoms
as other.

1 Like

I ordered from Vitamin Shoppe on line 3 empty bottles -
Small dark blue bottles with dropper. I ordered sweet almond oil, pappermint oil, and geranium oil.
I made 3 bottles mostly almond oil, several drop of geranium
Oil. And a lot of drops of perppermint. I will inhale deeply 4 times and rub oil n gum. Face, or anywhere it hurts.
This so much better that oragel and doesn’t cause skin irritation.
I got this from another person on this site. I carry a bottle wherever I go.

Thanks for all the info.Have you looked into taking ginkgo .I take it but maybe I should stop because it is a vasodilater.Makes the veins and arteries a bit bigger to facilitaye more blood doing to the brain.
I will try the geranium oil recipe.Meant to get it today but after going to the dentist yesterday to get a little bump checked and having her just tap the bad tooth with her metal thingy by mistake,I am in brutal pain today.
Drugs and sudoku .Don’t mix.I need the moron sudokus now

I am also just using plastic spoon to eat.Anything metal in my mouth drives me nuts,now

I have not had that problem at dentis but I do know that cleaning teeth or other dental issues. I am using Oral B tooth brush and flossing so I can skip them.
Could you tell the different using the ginkov