Health Organization for Pudendal Education

I am someone who is extremely sensitive to medicines. I think this could partly have to do with the fact that I am hypermobile. I’ve also experienced many symptoms associated with POTS ever since I was young.

I experienced involuntary limb jerking, mood swings, slight depersonalization, nausea, and burning feet from just taking 10mg Flexeril (cyclobenzaprine), then taking Robaxin (~600 mg?). About 4 weeks after discontinuing muscle relaxants, these symptoms disappeared. From what I’ve read, cyclobenzaprine is loosely related to tricyclic antidepressants, but one bond is different. The likelihood of accidentally overdosing on TCAs is more common.

There's a forum called survivingantidepressants.org where people with sensitive nervous systems share the severe, long-term withdrawal effects they experience after stopping or tapering off of medications. Gabapentin and various antidepressants are among the medicines named. Some people experience devastating symptoms for years.

Some of these symptoms include:

-severe nausea
-dizziness
-insomnia
-intrusive thoughts
- severe migraines
-burning feet
-depersonalization -
-derealization
-sexual dysfunction
-extreme mood swings
-Anorgasmia
-PGAD
-Nightmares

The above symptoms were one person's withdrawal symptoms after taking only one drug. Their diagnosis was serotonin discontinuation syndrome or SSRI discontinuation syndrome. While some people experience serotonin syndrome from taking multiple drugs which affect neurotransmitters, people who are highly sensitive to medication can experience the same symptoms from only one drug.

Sadly, someone I know has been dealing with discontinuation syndrome symptoms for 2 1/2 years now.

Due to these experiences, I'm very wary of taking any kind of medication which affects serotonin. I also harbor a lot of worry around withdrawal symptoms after reading about the nightmarish experiences these forum posters endured.

I know I’ll probably just have to grit my teeth and take something, then cross whatever the withdrawal bridge brings when I arrive, but I was hoping there was a chance I could experiment less with medicines to minimize the chances of negative side effects / withdrawal effects from switching on and off of multiple medications to see which one works.

I have a sister who takes Wellbutrin without issue and a cousin who took Gabapentin for a herniated disk for 1-2 years with no issues. But, being that my reaction to drugs is stronger than my older sister's, I'm pretty sure my body would react to any medicine more strongly than the average person and possibly more strongly than my cousin and sister.

I've also read on the forum that Gabapentin can sometimes cause polyneuropathy, short-term memory loss, and brain fog. There's an online group about Gabapentin awareness / withdrawal side effects which I'm a member of. Many members state that Gaba is an epilepsy drug, not a pain medicine. Studies showing that Gabapentin has not been shown to effectively treat neuropathic pain are also posted. Someone also posted on here that Gabapentin has only been shown to work for 30% of the population.

Would I perhaps be better off with a TCA? I don't want to feel drugged up 24/7 because even when I was on the muscle relaxants I was too sleepy during the day and I felt like I could hardly think through my drugged-up haze.

Does anyone have any tips on safer pain medications for those with pre-existing sensitive nervous systems even before central sensitization or CRPS from the pain? I know starting at a lower dose makes sense because a smaller dose usually has similar effects on me that a larger dose might have on someone else.

I'm also interested in trying medical marijuana and CBD oil to see if that helps, but my pain level rises to an 8 or 9 at times and I've read that natural remedies usually aren't enough. And since marijuana and CBD can interact with or affect absorption of other meds, I definitely wouldn't be able to take them with a prescription, which is unfortunate.

I know one person can react to a certain medicine in a completely different way than another, so this may be asking the possible. But, I just thought I’d post this to see which medicine or combination of medicines have been most successful in decreasing nerve pain among members.

Thanks in advance.

I have take Effexor xr for many years. I have tried twice in the past two years to get off this medicine and I had the most horrid experience both times. First time I transition to Zoloft and I was extremely fatigued ...just recently I tried to use Prozac which stays in your system for days to get off the Effexor which has a very short half life...meaning it leaves your body very quickly. If I miss my dosage by hours my head feels like it has a jackhammer in it. I also become paralyzed with anxiety. Mind you, I am on a low dose of 75 mg. I wish I had never swallowed that first pill years ago but a pain Dr thought it would help with pain.

My deceased husband on the other hand took 1800 mg of gabapentin for years and years. He took it for his foot neurothapy. One time he decided to stop it cold turkey and the poor soul did not hardly recognize me. Very scary. However the gabapentin did help him a great deal.

I recently asked a therapist if long term use of an antidepressant causes brain damage. She told me what I already suspected. For years we have been supplementing our brains with these important neurotransmitters...then we suddenly stop so the brain goes into withdrawal. She felt for most people they would always need to take them as our brains couldnot catch up!

I am giving serious consideration to seeing a naturopathic dr who knows how to use more natural substances like 5 htp, St John’s Wort, Sam-e for instance. You can never mix these supplements with drugs. I completely understand your fear of meds...however severe genital pain day after day certainly messes with your head as well. It causes me to be extremely fatigued and anxious. It has been a 25 plus year journey for me and I have tried it all except for a pain pump!

Hi Grammy,

Thanks for your post and nice to meet you.

Yes, I suppose some type of drug and some type of reaction is unavoidable.

I'm so sorry to hear about your 25-year struggle. You are an amazingly strong and brave person to go through something like this for so long. Hugs to you.

Yes, I like to lean towards the natural medicine route, but it's a shame that not everything can be mixed.

To be honest, I believe antidepressants can cause damage to the brain / neurotransmitters too, which is why it's so hard for me to accept that I will need to take them or something similar. I know some people slowly improve with time and very slow tapers, but I guess similar to PN, there are better days and worse and it's kind of a rollercoaster ride.

If I may ask, are you now on both Effexor and Prozac because you're still tapering from the Prozac?

Oh no, 1800 to 0 sounds like a terrifying drop. I'm very sorry for your loss.

I definitely know what you mean by chronic fatigue and anxiety. It's funny because I experienced both to some extent before, but this has been a whole new ball game.

I sincerely hope you've been able to find some helpful tips and resources through this forum at least and that your medical support team has been helpful. Are there any specific treatments / habits you've found which help you (like acupuncture, for example)? Just wondering if you've been able to find useful treatments alongside the medication.

Seeing a naturopath sounds like a good idea. I've been interested in seeing a naturopath too because they can offer a different perspective than most traditional doctors. I also like the holistic view of medicine rather than going to see doctors who specialize in one area and are clueless about contributing factors outside their specific realm, but I guess there's benefits and drawbacks to both natural and Western medicine.

For anyone searching alternative treatments / naturopath on the pudendalhope forum:

A friend of mine told me about a naturopath who offers something called Perineural Injection Therapy as part of his treatments, which I thought sounded interesting. I'm not totally sure it could help the pudendal nerve specifically but it seems like it could possibly help people with other irritated nerve clusters in nearby areas. Granted, I am speculating right now, but just thought I'd throw it out there if anyone is interested in trying it to see.

Here's a link with some information:
https://www.beaconortho.com/blog/perin ... iene-m-d/

I also read a blog by someone whose pudendal neuralgia (caused by stressful labor) was cured through alternative medicine treatments, although I think her case may have been less severe than mine and yours. I can't seem to find the link (argh), but I remember she said she saw a kinesiologist through her naturopath.

Has anyone heard of or tried Serrapeptase? A friend recommended it to me today and I’ve never heard of it.
MarionC