Does anyone have any experience of using Pregablin (Lyrica) which is prescribed for epilepsy and neuropathic pain?

[huggs]

I have severe occipital neuralgia (base of skull and back of head), which is due to a flare up of neck problems, which were caused by prolonged and severe cough. I was previously prescribed Gabapentin for this pain, and it did help, but I had to stop taking them as they made my epilepsy worse. This Pregaglin is also to treat epilepsy as well as neuropathic pain (neuralgia), but I am very wary of trying them after my experience of Gabapentin. Reading all the literature about this drug, it mentions so many side effects and it may cause convulsions. When I tried to explain to the doctor, she said that was all I could get and to try it. She then said my 8 minutes were up and showed me the door. I had tried to explain about how important it was to get continuity of care, and that it was well nigh impossible to get the same doctor each time you need to visit. She said, that was too bad and that was the way the system worked, and because there is only one practice on the island I will just have to accept it. I also asked for rescue meds, because the NICE guidelines recommend them. She refused saying that in Scotland it is another organisation called cine or sign (not sure of spelling as she couldn't tell me), and rescue meds are not recommended by them. Does anyone know if this is true.? I am at the end of my tether. I have struggled for 18 months to get proper help, and although I have improved in that time there is not one doctor who I have been able to tell everything that has gone on, because of the time limit. They do not do double appointments. I am disgusted by the way the Health Service is run now. It is all about the doctors, and not the patients. I have always been against private medicine, but I am seriously thinking about looking into it. At least if they are getting paid, they will have to listen to me! I am rambling, because I am really upset. I now feel there is no place to turn to for proper medical help. Thanks. Hugs xx

[Ian123]

Lyrica and Epilepsy healthunlocked.com/epilepsy...

[huggs]

Thanks Ian. This medication has been prescribed for me for neuralgia, although it also an anti-convulsant and I have epilepsy.! I am on other medication for my epilepsy, and a big drawback to adding another anticonvulsant to the mix is that my seizures will increase for a while. I am really caught between a rock and a hard place, because I am in severe pain which this new medication is suppose to help, but I do not want any more seizures. I will contact Epilepsy Action in the morning, and see what they say. Thanks again for your help, much appreciated. hugs xx

[jimmyw123 in reply to huggs]

i was prescribed gabapenton for neuropathic pain, this did not agree with me, i was then prescribed pregabalon [lyrica] this helped but as the pain kept comming back, they kept increasing the dose, i am now on 300 mg,, the pain was ok for a while, but returns with a vengance now and then,,jimmy

[huggs in reply to jimmyw123]

Hi Jimmy, good morning. You have had so side effects from the pregablin then? The problem I have, as I said, that this drug is an anti-convulsant as well as being used to treat neuropathtic pain, and I also have epilepsy and am on other medication for that. If another anticonvulsant is introduced it tends to increase seizures for a while. I am suppose start on 150 mg per day. Good luck Jimmy. hugs xx

[jimmyw123 in reply to huggs]

hi huggs ,good morning x, i had to finish that post quickly this morning as my carer came in ,she stood there ,hands on hips, "are you quite finished now" ,,it was my bath day, [some bath, a drip of water, then off lol].,,.now i have my home help in, i have had her [jane] faithfully for about 8 years, every wed., for couple of hours, but shes good, and very helpful, anyway i have digressed a bit from the thread,,,,,,,,,concerning the pregabalon,[i believe this is more expensive than gabapenton], i know its can be for both things, neuropathic pain [in my case] but for epilepsy [in your case hugs] but i was under the understanding this had to be started on a low dose [50mg] then worked up to 300mg? wonder if anyone can tell me if this is correct!! but this pregabalon [lyrica] gives me no side effects as far as i know.

p,s my apologies hugs, i first tried to post this earlier, but due to unforseen circumstances have only found time to post it now,,,jimmy xxx

[jimmyw123 in reply to jimmyw123]

higain hugs, i thought i wuld just mention, i am in scotland and receive rescue meds, i dont see why you should not get them.,

i also see your point in using two different anticonvulsant meds, i think you are right in speaking to epilepsy action, and explain your plight, i can see your worrying over this hugs, although a difficult situation, please try not to worry [sometimes easier said than done] as i worry at you worrying.....today has been a bad day for me, due to various things, i have been up since 3am, am now very tired, and finding it hard to concentrate. i wish i could help more hugs, if its any consolation, i made the mistake of reading many things about pregabalon,[lyrica] i have since found most of the readings unfounded,[ in my case anyway] ,It has helped me greatly.,,, i do hope you get things sorted out hugs, lots of kind regards,,,jimmy xxx

im off for a nap now b4 i drop lol

[huggs in reply to jimmyw123]

Hi again Jimmy, Sounds like you have had a lovely day!. I think you may have misunderstood my post, or I didn't make it clear enough. The pregabalin was t prescribed to me for neuropathic pain only. As you say it is also prescribed for epilepsy, for which I am on tegretol and lamotrigine. When you add another anticonvulsant to the mix you are already taking, it causes seizures to increase. At first they tried Gabapentin, and it helped for a few days, but then I had multiple seizures and had to stop. It is for this reason I am wary of taking the Pregabalin. I have just checked the leaflet that comes with the drug and it says that the dose will generally be between 150mg-600mg per day, and the dose is adjusted according to your condition. I have to take 75mg twice a day. No need to apologise Jimmy, just you take care of yourself and be good. Thanks again. hugs xxxx

[jimmyw123 in reply to huggs]

i see what your meaning hugs, its me who has not made my posts clear, mainly just due to tiredness. i see by the other posts you have contacted the b,l,f, i hope they can help or advise, i just wish i could be of more help,, but maybe the fear of the last meds [gabapenton] is putting you off, this drug had a bad effect on me also.. then when prescribed pregabalin, i was really very wary, but to my surprise it worked very well, so maybe as peeg says, worth a try,,,

kind regards,,jimmy xxx

[huggs in reply to jimmyw123]

Hi Jimmy, Thanks for your posts. I was going to reply to your last one, but you said you were going for a nap, so I thought I'd leave it for a while, as I too am exhausted! Sorry, that you have had such a bad night, and surely you will sleep better tonight.

In Scotland they use SIGN guidelines for various, conditions, while in England they use NICE guidelines. Guess what, the SIGN guidelines for copd are the same as NICE. I think I put the doctors back up when I quoted NICE as her attitude totally changed. She was in the wrong or did not know, but was determined not to give them to me.

I have an appointment with the Practice Manager tomorrow afternoon after I go to physio, so I will need to write everything down tonight. I have already made a few notes. If I need to say anything more about rescue meds in Scotland, I will say that I have a friend in Edinburgh who gets them.! No mention of BLF or anything like that. The situation is ridiculous.

Thanks for all your help and support Jimmy, now you go and rest, and get an early night. love and hugs xxxx

[Bevvy]

This is all rubbish for you. Lots of doctors seem to refuse rescue meds (for no good reason that I can see). I am lucky that I have rescue meds plus news for nebuliser so I don't have to keep going to A&E.

In relation to treatment at GP surgery -of course you will want to see one GP for continuity of care. Whenever I see diff GP at my surgery is a real pain and notes on computer don't tell full story. Try speaking to practice manager. Also is not unreasonable to want double appointment every now and again.

Hope you get sorted.

[huggs in reply to Bevvy]

Hi Bevvy, I just wanted to let you know that I took your advice and made an appointment to see the Practice Manager, whom I saw on Thursday for over an hour. He is very approachable and informal, and listened carefully, and discussed all the points I brought up. To cut a long story short, he informed me that in view of what I had told him the complaints procedure had to be implemented. He wanted my scribbled notes to tell the doctor what I was complaining about, but I said they were too scrappy, and over the weekend I would send him a properly constructed email, which would cover everything we discussed. He asked if I would accept an apology from her, and of course I said I would. I thought I would be tearful, but his informal and no nonsense but jovial manner made sure that did not happen. Thanks again for the advice. Oh, I forgot to say that the doctor has to respond to me in writing within 10 days addressing all my points. Take care, hugs xxx

[Bevvy in reply to huggs]

Am really pleased that something positive appears to be happening. No-one likes to complain and us that have chronic conditions want to do so less. Because we have enough to deal with day to day. But sometimes we are left with no choice and what you were asking for is not unreasonable. All the best.

[huggs]

Thanks for replying Bevvy. I have been struggling for 18 months with copd, asthma, epiplepsy, numerous infections and now neuralgia. Dr said the NICE guidelines were not followed in Scotland, and if I became ill with breathing problems there was always a doctor on call or I could go to the hospital. I have seen this doctor twice before and she seemed ok. There are about 2 doctors in the practice that no one will go and see, so if you phone up on the day they have decided you have no choice who you see, it will be the first name that comes up on the computer and that's it. There were three female GP's (one is emigarating today) who have all been on maternity leave at one time or another over the past 18 months. There have also been other doctors going on "sabbaticals" overseas. Result is loads of locums.

She also said that the practice did not believe in rescue meds because they want to know when they are being taken and how much exacerbations a patient is having. I can see her point there, but I suggested having the meds in the house and phoning doctor before taking them. No way, she said. I am not the type to take antibiotics at a sniffle, and if she had looked at my notes she would have seen that I did not go near a doctor for about 3 years, (although I needed to) because I was so disgusted by the way things were being run. She also said they would not do double appointments because everyone would then want one. I explained that there was so much going on that I needed the time to go through the more important issues. Her reply was to get one thing seen to at a time. Just keep coming back.

I am at my wits end Bevvy. I will think about approaching the Practice Manager, but my feeling is that he or she will just stick by the doctors, as it is a medical decision or situation.

Thanks again, and I hope you keep well. Hugs xx

[Chassa]

I won't go into depth, other then to say that my LHA will not allow GP's to prescribe Pregablin on the grounds of cost. I was instead told I would have to go on Gabapentin which I did even though they were not suitable for the reason I had been recommended the Pregablin, by the two specialist respiratory hospitals I am under. The Consultants from both wrote on my behalf, but my GP was still not permitted to prescribe. Problem now overcome by Consultant prescribing, but this means me making a forty mile round trip to the hospital every two months as the prescription is only valid at the hospital pharmacy! What a palaver, but I have to say even so well worth it for improvement I have felt with Pregablin.

As to your Doctor's attitude, it seems harsh and ridiculous. Her reasons for not prescribing stand by meds do not stand up, as she will know if you have had an exacerbation every time you request replacement stand by meds!

[huggs]

Hi Chassa,

Your situation is quite ridiculous. I take it that you are in England, as the guidelines appear to be different in Scotland. What is the difference in cost between your Consultant prescribing it over your GP prescribing it. I take it both are in the same LHA? It is completely non sensical. I am glad you have felt an improvement with Pregablin, so I am assuming no side effects? I really am wary of taking them for the reasons which I have already outlined.

My doctor's attitude was harsh, uncaring and unreasonable, which was not the impression I got before from her. To me, it seems they are ok if you go with something minor, say a urinary infection for example, and they see you once and that's it over. It has long been my impression, that at my practice they seem to get fed up if you have a number of chronic/and or progressive disorders. It is so wrong. My practice has been so full of locums that you never know who is going to be there apart from the two plonkers who no one will see.!!! Thanks for replying Chassa and good luck. hugs xx

[junespoon]

I have taken Pregabalin for many years now for neuropathic pain, and have had no bad reaction, cannot do without them,

[huggs in reply to junespoon]

Hi junespoon, Thanks for that. Good luck hugs xx

[Sooki]

It was several years ago when I took Lyrica for trigeminal neuralgia ,the most painful thing ever.It worked for me,with no side effects.i have never had another attack after being on the Lyrica for about 6 months.Sooki.

[dwitt]

I kave a couple of major pain areas and took Morphine and like you gabapentin alomg with numerfous of other oTC and prescribe medications over the years. I have sevral health issues to address that all require medication. I decided to drop the pain meds in favor of a tens unit (electric stem) and a cryo machine - small ice water container that with a pump, hose and bladder circulates bumps the solution over the pain area. I will sometimes use electric heat. These work as good as the pills without the side effects. Perhaps you too can find alternate relief. I was told to loose weigh and exercise but I have poor excuses I why I don't do those enough. May we all get better and strive to live a long, healthy, wealthy an happy life.

[huggs in reply to dwitt]

Hi dwitt,

Thanks for replying. My neuralgia is caused by the violent and prolonged coughing I had for months. The coughing also worsened pre-existing neck problems. Initially, I applied heat to my neck which did help, but then the coughing got worse and the neuralgia started. Instinctively I felt ice would be better for my neck, and it does help a bit. I am also attending physiotherapy for neck issues. I have a collar to wear when it gets really bad, but I don't wear it all the time. I am also getting acupuncture for my neck which did appear to be helping, until Sunday morning when I awakened in a funny position, and could not straighten my head until night time. I have also tried a tens machine in the past but it did not help me unfortunately. I wish it did as it would solve a lot of problems. I am interested in this cryo machine you have mentioned, as I have never heard of it before. I know this might sound funny, but would it be suitable for my head and neck? If there is any inflammation present in a painful area then heat just makes it worse. Sometimes ice is the answer. Thanks for your advice and help. hugs xx

[huggs]

Hi Sooki,

Thanks for replying and pleased it helped you. Hope you don't need it again. Good luck. hugs xx

[peege]

Hi Huggs, I hear your fury and deeply sympathise. It's infuriating not being listened to.

Who said it's neuralgia? Could that be wrong?

I would be trying a private doctor if I could afford it in your situation. I think I'd also try the Pregabalin, it might just work for you. You won't know until you try it.

Hopefully more replies will come in for you, no one has yet said "don't touch it with a barge pole" you may be able to make a decision after a few more answers.

Wishing you good luck with it sounds trite & useless but I do wish you well in getting this sorted out. P xxxxxx

[huggs in reply to peege]

Hi Peeg, Thanks for replying and the sympathy. It is neuralgia, there is no doubt there, and cervical spondylosis.

I was just thinking last night after I posted my question, that here I was harping on about going privately and as I live on an island, I would need to go to the mainland. I can't even get into the health centre 3 miles away without a taxi! I cannot afford to go privately, but if I could get to the mainland, then I would look into the cost and take out a loan.

I am waiting on a call back from the Practice Manager to discuss the situation with him. I am also waiting a call back from the Scottish branch of BLF to see what the sign or cine guidelines are regarding rescue meds.

I cannot begin to tell you how upset I am. I think the Practice Manager will just bottle out of any points I bring up and saying it is a medical problem. There are other issues that I will bring up, which are clearly management problems, so he will not be able to wriggle out of these. I might just be too cynical at the moment, and maybe he will be helpful. Who knows? Thanks again Peeg xxxxx

[peege in reply to huggs]

I'm glad you've got contact with the Scot BLF. They should be able to give you some guidance. Ask them about any private docs they know of then check their reviews/info on the net xxxx

[huggs in reply to peege]

Hi peeg,

Thanks for getting back to me. They have just phoned me and are going to send the sign (Scottish version of Nice) to me, by email. It was admin staff that I spoke to, but they went online to find out. In the phone call, she did say that the sign guidelines as far as copd are the same as the Nice guidelines! So the doctor didn't even know that!

As far as the private route goes, I would be unable to get to the mainland at the moment. As far as cost goes, I have no idea what it would cost but I have no money so would have to get a loan. Thanks again. hugs xxxx

[Hidden]

Hi Huggs, I took Lyrica for about 10 days when I got shingles in 2011. Didn't notice any side effects really and they worked well enough on the shingles pain. They are now prescribed as a mild antidepressant as well and I think a lot of people with Fibromyalgia take Lyrica. Your situation at the medical practise is a disgrace and I think you need to write a letter to the manager outlining your difficulties. Unfortunately many patients with chronic illnesses end up in this situation and you need to be very assertive and persistent to get the kind of attention you need.

[huggs in reply to Hidden]

Hi Argana,

I made an appointment with the Practice Manager, and met him for over an hour on Thursday. He was very informal, jovial and talkative. He listened carefully to my concerns. To cut a long story short, he said in view of what I had told him he now had to implement the complaints procedure. I have to write or email him covering what we discussed and he would then discuss the situation with her. She has 10 days to respond to me, and if I am satisfied with her response then that's the end of the matter. If not it goes elsewhere to be judged, and if I am still unhappy then it goes to the Ombusman. Obviously, I do not want it to get to stage 2 or 3. He asked me if I would accept an apology from her for her attitude and manner, to which I replied, off course". Thanks for the advice, and I just wanted to let you know what happened. hugs xx

[Hidden in reply to huggs]

Sounds like some progress Huggs and encouraging to know that there is a complaints procedure you can follow. Make sure you outline the main problems you've had with the doctor in question, especially the fact that you never get enough time to properly address your complex medical problems. Good Luck and well. Done on being assertive and taking control of the situation.

[huggs]

Thanks Argana. Glad the Lyrica worked for you alright. I am just waiting on a phone call about an appointment with the Practice Manager. I do not hold out much hope as I think they will just all stick up for each other. I will find out. The funny thing is, that the doctor who would not give me rescue meds, stated that the NICE guidelines were for England, and Scotland followed SIGN guidelines. I have just found out that the SIGN guidelines for copd in Scotland are the same as England! She didn't even know that! Prat. I have no wish to rock the boat or cause trouble, I just want proper consistent medical care, like we are all entitled to. Trouble is that I am so upset at the moment, that I know I will burst into tears as soon as I start talking about the situation. Ah well, I suppose he will be use to weeping women! Keep well, and thanks again. hugs xx

[Phil40]

Wow I am sorry to read your experiences there.

I thought NICE stood for National Institute for Clinical Excellence and unless something happened last night surely Scotland is part of the Nation still?

Sounds like a delightful doctor you have. Did you run her dog over or something?

Find someone to take with you to appointments for support and ask if you can take notes to help remember what is said afterwards.

What a charming caring Doctor.