Pregabalin and side effects - Pelvic Pain Suppo...

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Pregabalin and side effects

ali10
ali10

I was recently put on Pregabalin for my chronic pelvic pain but since going on it my anxiety levels have shot through the roof and I’ve had several panic attacks and just feel incredibly on edge.

I was initially put on a very low dose of 25mg once a day which was increased to 25mg twice a day after two weeks but following a very bad flare-up this was increased to 50mg twice a day.

I appreciate that this is still a fairly moderate dose but has anyone else had similar side effects at any point?

14 Replies
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I have chronic pelvic pain due to mesh surgery,the put you on this stuff for nerve pain,they start you low then before you know it you will be on high dose,I ended up on 600mg a day,I couldn’t function,It took over my mind,my eye site,I couldn’t drive,couldn’t get out of bed some days as I got so tired and depressed,I have had my mesh removed 10 weeks ago ,still suffer with chronic pain,I’m on MST at the moment due to many major surgeries in the same place,I would rather be in pain than take the meds for brave pain x💜🏴󠁧󠁢󠁷󠁬󠁳󠁿

Konagirl60
Konagirl60 in reply to heulwen

I to would rather be in somewhat managed pain than be taking prescribed opiates or using prescribed fentanyl duragesic patches. I learned the hard way.....

My Pain specialist neglected me....she committed fraud in my case.

I had a pinched nerve and she misdiagnosed me with post herpetic neuralgia. She and all the specialist’s I saw were covering up a post surgical health issue......metal Filshie clips from my tubal ligation had migrated! One was on my rectum for nine years causing terrible nerve pain and the other had migrated from my pelvic to ileum bowel!

If my Pain specialist had been honorable and given me Pain Clinic Intake forms, she would not have made an incorrect diagnosis. She never monitored me on all the incorrect medications she gave me.....including Pregabalin ( Lyrica ).

I lost my mind taking this medication. I became brain fogged, irritable and I gained about ten pounds and felt bloated. ( I was a fit 51 year old lady when I could not longer sit due to the pinched nerve ). It also made me very tired. After two months I quit cold turkey.....I want my wits about me! I did not want to be sedated.

As you can imagine, my Pain specialist was not happy that I had side effects AND I did not want to use pills. I knew I needed nerve blocks and decompression surgery. She was adamant that I was to be medication managed and I refused to take Hydromorphone.

I suffered 10/10 tortuous neuralgia for 3.5 years while waiting for surgery. The only relief I had was when I stood and while wearing capsicum Pain patches. No doctor would get me to the US for life sparing surgery and I paid and hired a registered nurse to get me my surgery. All 8 doctors were in on the cover up. They would see me and tell me they would advocate for me and then do nothing.

They all labeled me a woman with a personality disorder. My pinched nerve was a mental health issue? NOT!

Surgery anywhere near the pelvic area can cause long term pain. I had simple prostate reduction surgery and the very young doctor botched it. The pain was terrible but, as is common with PN, it went dormant during sleep so the pain wasn't compounded with fatigue. I have been on many meds and some of them worked a little, but most of them did nothing. Tne drug that works best for me is the one that is the most addictive, making it just a back-up drug. The best thing I did was quit nicotine and severly reduce my caffeine intake. Now I need to quite Lyrica and lose the 30 pounds I gained on it. The weight loss is a big issue since I am always sitting on the source of the pain.

It's been 3.5 years and the pain has gone from 9.5 to about 6 - 7 most of the time.

I think that quitting Lyrica may actually help after I get over the withdrawals.

Hi there. Whatever you do, taper the withdrawal of the medicine. It has caused a lot of users difficulty when trying to wean off of it.

I quit cold turkey but I was using it for only two months. Be careful and good luck. I bet you will lose the weight as I have....I also lost my appetite. Slowly.....it is coming back. Cheers.

Alaine1
Alaine1Administrator

Hi ali10,

Just to add that not everyone will end up on maximum doses and there isn’t any documented evidence to back this statement so please don’t feel concerned. Some will be helped by a low dose whilst others might need to go up to maximum doses. Some doctors prefer to use 1 or 2 different medications for nerve related pain (mine does) such as pregabalin and amitriptyline. This still allows maximum doses to be used of each drug but this rarely happens. I did initially feel a little edgy and jittery on pregabalin but this does settle down quickly. I would also add it’s probably best to limit the amount of caffeine you drink daily until this side effect settles. Do you have a diagnosis of what is causing your pelvic pain? I hope this helps and you find it beneficial

Konagirl60
Konagirl60 in reply to Alaine1

She needs to be properly and differentially diagnosed.

Alaine1
Alaine1Administrator in reply to Konagirl60

Sometimes the exact cause can’t be diagnosed due to the event already having passed. This is often the case with endometriosis where the lesions have been removed and further laparoscopic surgeries show no further lesions so the cause is due to the nervous system generating pain. Obviously endometriosis in many patients is known to reoccur so this should always be ruled out first. Opiates in this case would not be helpful so the best option is treating the pain with pregabalin or gabapentin. Endometriosis isn’t the only disease to cause this and it can occur even in the presence of disease or syndromes affecting the pelvis or organs in the pelvis. Unfortunately sometimes patients have to accept that no cause to their pain can be found despite seeing many specialists, having numerous tests including scans and investigative surgeries. This doesn’t mean the pain is in the patients head - far from it but in these cases medications working on the nerves is the best and only option. Research that has been carried out and a paper I read last year showed that opiates for chronic pelvic pain can actually make the pain work so they shouldn’t be used long term.

Konagirl60
Konagirl60 in reply to Alaine1

I agree BUT what is a person with pudendal nerve ‘ entrapment’ to do while waiting for medical appointments and tests that are scheduled a year away?

What is a person to do while they try and find another doctor to help them because another one wouldn’t?

It is utterly exhausting having to advocate for yourself when you are in pain, not sleeping and getting worried because you can no longer work and earn a living and/ or take care of your family anymore. How unfair!

Medical systems do not seem to be truly prepared to help people with chronic pain and particularly those with neuropathy.

So many doctors brush us off because they truly believe we are wanting attention and have a mental health issue! NOT! Nerve pain signals are acute and well identified. Neuralgia HURTS!!! Chronic uncontrolled pain is damaging to the brain.

Medications WERE NOT EFFECTIVE for my nerve pain. I suffered terrible side effects taking both Lyrica and Cymbalta. Same thing with Gabapentin....felt like a zombie. I gained 15 pounds, I felt light headed, brain fogged, more easily irritated and had to stop taking them. I permanently lost about 50% of my sense of smell and taste due to that combination of medications.

In my case, surgery saved my life. The doctors may not agree but they did not experience this....I did. Decompression surgery works and the sooner one gets it the better. Here in Canada, there are no neurosurgeons trained to release the nerve. Very scary....the pain causes suicidal thoughts....it is torture.

Alaine1
Alaine1Administrator in reply to Konagirl60

I agree but unfortunately there are many pelvic pain conditions that have long waiting times for treatments or GPs fobbing off patients. Endometriosis is one of them with an average waiting time of 7 years once the woman presents herself to her GP. The reality is that she’s likely to have suffered for 3-4 years before seeing the GP. Whilst the average is 7 years most women I know and myself included it took over 13 years and longer to diagnose my adenomyosis and IC. Unfortunately all pelvic pain patients are suffering

Nerve pain can present itself in many different forms and often the patient believes it’s from endometriosis flaring up again when surgery proves there is no further lesions present and the correct dose and combination of nerve pain medications work. Whilst you (and I ) have had bad experiences with doctors it doesn’t mean they are all doing a bad job nor is nerve pain anything to be sneered at. It can be extremely debilitating to suffer from. Surgery isn’t right for all medical conditions or each patient and the chronic pelvic pain condition(s) and the general health of the patient have to be taken into account

Konagirl60
Konagirl60 in reply to Alaine1

Alaina....I totally agree. Each of us is dealing with a unique and personal pelvis issue. Surgery did save my life though.

I may not have mentioned this but my surgeon who removed a metal titanium Filshie clip from my rectum ( after 9 years of torture ) also found endometriosis on a ureter. It was cauterized away. It seems to have helped.

Thanks for your honest opinions.

It’s still a low dose, I was on 300 mg, but all these side effects wear off with time, even suicidal thoughts.. I took it and don’t regret, pain was so horrendous that I would have taken any poison to numb it. Then you can gradually wean off later once symptoms settled.

I have been on 2x300mg Pregabalin now for 10-year`s for a still undiagnosed sciatica condition, the only problem I had, though I didn't relate the two, was weight gain, [slimming world put that right,] I had no other problems, I am male age 70, 14 stone I was 15/half,Pregabalin is not the greatest painkiller, but my toes let me know if late taking it, As I have stated I don't recognize any of the systems some of you seems to suffer from, but I may be the lucky one, finding the right pain med is hard, some of the drugs I was offered day one would make your curl, one was so dangerous it came with a cutter so you could half it for two weeks,the pill was the smallest you could get ,3rd on the list of side effects was thoughts of death,they into the bin day one, I'll sick with Pregabalin. I am sorry if I give the impression that Pregabalin caused my weight gain, it did not, bad eating habits did.there is a small risk of weight gain in some people.

Thanks for all your responses guys! It’s been a tough few weeks but towards the end, I’ve started to feel a bit more like my normal self again. I still have the fatigue and I’m more tired than usual but I can cope with that! I also had a flare-up earlier this week and the pain was definitely more subdued than usual!

Hidden
Hidden

How are you Ali? Is the medication still suiting you? I had a terrible reaction to Amitriptyline. It caused a myriad of hideous symptoms during the few weeks that I was on it which continued after ‘cold turkey’ withdrawal. I was on a tiny dose 😔

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