My wife reported numbness and tingling around her mouth, her surgery told her it was probably the level of Pregabalin she was on. They told her to drop the level from 300mg to 200mg daily. Within 4 weeks the severe vaginal pain she was taking the medication for returned! Our own doctor on returning from leave immediately instructed her to return ( slowly) to the original level of 300mg. This was achieved by the 1st.April 2017, and continued until May 2017, when the psychiatric ward she was then in ( due suicide attempts) increased her dose to 375mg for about a week then 450mg which she is still on. Since the vaginal pain returned it has not abated in severity causing several suicide attempt and admittance to hospital for her own safety. Her family are in a quandary as to if the Pregabalin was controlling her pain or just coincidence that it returned following a 33% daily reduction? Her husband thinks it too ,much of a coincidence after 3 years of general good health.
She has now been back on her original dose (300mg) or higher (375,450mg) for over 2 months without any easing of her pain at all.And still has suicidal thoughts because of it. Someone help us please.
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Alwenna1943
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HI has she been back to her doctors and are they aware of this. She might need a change of meds rather than the current ones upping. I looked up this drug and it did mention being aware of taking it if you suffer from depression as it can make it worse. Nothing about vaginial pain though. See her doctor and insist on a meds review. Something isn't right and it needs sorting.
Hi alwenna 1943 hi I am on pregabalin 900mg a day I have never heard of numbness and tingling around the mouth and I have been taking pregabalin for 7years now plus I take other medication as well I'm sorry about alwenna trying to take her own life, is alwenna on any other medications as well as the pregabalin. I was in the same way I tried to take my own life I spent 4 weeks in a coma but that was not the meds that I was on. I think alwenna should go back to her gp a get them to refer her to a pain specialist they can help her with the right medication.
I know how much pain alwenna is going through it's been the same pain for me for last 7 years. Best wishes to u both,
Many thanks, most options have been tried including ECT (Electro Convulsive Therapy) but no if any use. Problem started when her surgery suggested she dropped her medication of pregabalin from 300mg to 200mg.this should have been done gradually over one month,not over night.The surgery should have suggested supplying 25mg tablets so she couls drop down to 10% not 33% as happened.Our doctor immediately upped hed med back to 300mg.and apologised at the error but by then the damage was done! Alwenna has been back on 300mg since 1st.April 2017 all of May, and in early June the doctors at her hospital upped again to 375mg & then 450mg which she is still on now. Unfortunately so far nothing good has happened and there has been to improvement back to as she was befor the original 300mg dose was dropped on the advice of her surgery doctor a locum, (not our permanent doctor who quickly reajusted when he found out). The situation here is tragic as we see no improvement in Alwenna and her situation.
It definitely sounds like pregabalin is a factor here. Dropping by 100mg overnight is a massively bad idea and can cause all sorts of issues (including seizures, crippling anxiety, severe depression, nausea, GI tract problems, neurological problems such as itching / tingling / burning etc etc etc).
I don't like criticising doctors, but when it comes to pregabalin (and many other CNS affecting drugs) they really don't seem to listen to their patients or even consider that it may be a causative factor in the resulting problems.
I'm sure for some (most?) people the benefits outweigh the concerns, but for a huge minority (?) pregabalin is a total nightmare. When you do some reading about the history of this drug, the way it has been incorrectly prescribed 'off-label' and the fines that Pfizer have paid due to their illegal marketing practises it really opens your eyes to the way the pharmaceutical industry works. Pfizer have been fined $100s of millions for their selling practises. One of the scientists involved in the original clinical trials has spent 6 months in prison for falsifying data, and yet they have still made $billions of it.
Oh, and it prevents you from creating new synapses in your brain. Which can't be good...
Suicidal ideation and activation can most definitely be side-effects of Pregabalin.
As can so many other things. I was on this for a few years and more than any other drug it had convinced me to do my research before taking any more prescription drugs . It has been very difficult to get off and has taken me about 2 years of slowly tapering.
There is a 'secret' Facebook group that may interest you, if you are on Facebook and would like to be added PM me with your details and I will arrange it.
It used to be a private group but the group creator had some issues with a user and had to make it secret, but they will still accept members from referrals. They have a lot of information about side-effects, withdrawal effects and ways of slowly titrating off to minimise these effects.
Unfortunately a lot of doctors are either unaware or unwilling to admit to the problems that this drug can cause.
It took me 2 years to figure out what it was that was making me so ill, and it was only when I read an article from someone describing their experience that I realised. I know for a fact that it was the pregabalin as the worst effects occurred whenever I missed a dose (bit didn't realise that's what was happening).
All the best.
Edited to say:
Doctors will often advise reducing the dose way too quickly and don't believe people when they describe the problems they are having. A very slow taper is the best way to get off it, by no more than 10% of the dose in one go and then holding at that level for as long as it takes for symptoms to stabilise. This requires certain techniques due to the smallest capsule being 25mg. The FB group has lots of info on this.
It's called Lyrica survivors, but there are plenty that have had similar (although usually less severe) problems with gabapentin.
There are plenty of other resources for different meds though, I'm sure there will be similar groups for opiates etc, but I cannot vouch for their content.
Thank you for your help, I have asked many in the medical profession for a realistic weaning off programme? Most give me one lasting 3 days despite the time on the medication! When I contacted a charity dealing with stopping anti depressants,heroin and other tablets,they were aghast at the advice given, most stated weaning off should be in small doses sometimes taking almost as long as one was on the medication! Certainly not in 3 days as advised by my surgery. Doctors are quick to prescribe medication but sadly lacking when it comes to weaning off them, where most have no idea at all? Alwenna is currently on 450mg in three 150mg doses daily, can anyone suggest a safe weaning off programme if my doctors suggest it if it is not doing its job! I have lost confidence in their version of weaning off tablets as I don't think they have much experience of it.the tablet concerned is Pregabalin/lyrica in USA.
Sorry PF say again best way to join Lyrica survivors.alwenna1943 been advised for time being to stay as is and not wean of as team looking after her have noticed a general improvement since last seen 2 weeks ago whereas I have not but then I am with her 24/7 will keep all informed when starting a weaning off prog. So far not seen a realistic weaning prog., one charity says half a tablet for one day say Friday rest of week normal dose,then second week no tablet Friday rest of week normal dose, and progressing like that reducing by half a tablet only per week, so effectively reducing dose by one tablet every two weeks. This is ok if medication is in tablet form? It would differ as alwenna on 150 mg capsules x 3 daily. So will need to get smaller dosage capsules of say 25mg each, to keep reduction small.
If I understand the method you are describing correctly then there would be a point where you would miss out taking any on one day of the week? If so I would personally say that is not a good way to do it with pregabalin.
My problems with pregabalin became apparent when I (accidentally) missed a dose in the evening. I would wake up 2-3 hours before I usually would the next morning and felt absolutely terrible, massive nausea, shivers / sweating, general flu-like feeling that left me incapable of functioning. I would not want to go through that on a weekly basis, for sure. Better to have a slightly reduced but constant dose than have one day with less / none IMHO.
Also as far as I'm aware pregabalin (Lyrica and generics which are not currently available in the US) are all in capsule form. Doing a water titration is the easiest / most accurate way of splitting capsules, assuming you don't have access to scales sensitive enough to measure in 1mg steps. And even if you do splitting powder and putting it back in a capsule is somewhat tedious.
Even with 25 mg capsules (the smallest) it is usually necessary to use water titration when the dose gets below, say 150mg.
It's not as difficult as it may sound, but an elderly, possibly confused patient may need assistance with it.
I really would suggest creating a Facebook account, even if just for the purpose of joining said group. There are lots of people on there with good knowledge of pregabalin and they are a very supportive group.
You can use any name you like and all you need is an email address.
Re your last on Pregabalin. Sorry not on Facebook is there any other way to make contact ( too old for Facebook I think? Generation thing!) will certainly pay attention if deciding to reduce or stop this drug to a slow reduction, alwenna very frustrated that it was her original enquiry to our surgery that started this period of illness and pain. The damage was done by the time our permanent doctor returned from leave, and suggested going back onto the original dosage level,sadly 10 weeks later and two increases up to 450mg has not stopped the extreme pain being experienced by her!
You're never too old for Facebook! I don't know of another way of contacting the group as it is a Facebook group. It isn't any harder to create a Facebook profile than it is to register on here really. You don't even have to use your actual name if you are joining solely to access that group. Let me know if you do.
As for your question above that group recommends dropping your dose by no more than 10% at a time, and then holding at that dose until the symptoms have stabilised. Some are more sensitive to these drops than others, so the only way to find out is to try. If 10% causes too many problems another way is to reduce by 1mg a day. If symptoms become a problem then hold at the current dose until stabilised
For myself, when I was on a higher dose (300mg) I dropped by one 25mg capsule and then held until I felt ok. It wasn't as bad for me as it is for some others, but I didn't rush it. I also weaned off sertraline at the same time (not the best idea with hindsight), and the whole process took me something like 2 years. When I got down to a lower dose I used the water titration method.
If you can't get the smaller capsules you can use the water titration method. This involves dissolving the contents of a capsule in water and taking the required quantity. So if you only have 150mg tablets then dissolve them in, say 150ml of water (so 150ml = 150mg of pregabalin) and either tip away 15ml or take 135ml and save the remainder for the next dose.
Make sure the liquid is stirred / shaken before use and store in the fridge preferably in a labelled container. It should be good for a few days like this.
There are some supplements that people take for help with the side-effects, but I can't personally vouch for their effectiveness. Again the support group have a lot of literature with details.
I was taking lyrica for post surgery neuropathy in my feet and lower legs. I tool myself off lyrica (300 mg per day) and I no longer had the diffuse nerve pain in my legs. I feel lyrica was causing me more pain than was helping. However you must ween off ( I was removing power from inside the capsules ) and the pain will be intense for a week or two until you ween off, and then it went away. I will never take this junk again. Good luck.
The easiest way of splitting the capsules is to empty them into water - say 25mg in 25ml of water, and then you can measure whatever amount you wish to take. Easier to measure if you use more water.
This also has the benefit that you can do it with any sized capsule in case you can't get / don't have any 25mg ones.
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