Is it safe?

Treatment and medication
1

I found the forum today and from what I see Pregabalin makes a mess in your body, wityhdrawal symptoms are really bad and if a doctor prescribes Pregabalin as 1st time anxiety drug its a bad doctor because there are better and safer options.

I am autistic (Asperger Syndrome) and have anxiety related to stuff like looking for a job, moving out or even going on a trip by myself somewhere I have never been before. I am afraid of public trasportation and crowded waiting rooms so even doctor appointment is troublesome for me. And daily life such as shopping also causes me anxiety(I get afraid everytime mom says we don't have eonugh money to buy something I want - I return to thinking its lal my fault we dont have money and  should pay for things with my own money but if I spend my pocket money I won't have ny money in case we really need money for some unknown emergancy because mom doesn't have any savings anymore and dad yells at us when mom asks him for money).

2,5 weeks ago I had a meltdown/anxiety attack because my dad returned home after a long absence and started his regular abuse and I realized it will be like this again. I had other problems when he wasn't there (some job interviews and anxiety related to them) so I was already on the edge and the last thing I needed was dad yelling at me for being spoiled brat respecting noone and not even trying to get a job despite trying to get a job and being very stressed by being unable to get one. 

I freaked out, escaped the house and refused to go back and ended up in hospital emergency due to crying and not being able to calm down (mom took me there).

I am on Pregabalin since then. First week it was 75mg once a day, now it is 75mg twice a day(150mg a day) and I am supposed to go on 150mg twice a day (300mg a day). For the first week I was on both Spamilan and Pregabalin but Spamilan caused so bad side effects to me(diziness, headaches, loosing balance as well as tinnus and visual snow increase - getting worse and worse everyday) that I decided to go see the doctor a week ealrier than appointment date and she told me to give up on Spamilan and that Pregabalin will be enough because they are "all the same".

Pregabalin doesn't seem to cause any side effects to me except some green vision upon waking up (bright while lights and shining objects have green tint)-  but it disapears withoin half of second, some ocasional double vision on high contrast stuff (but I had it before so it might not be related to the drug) and itchy left eye (could be unrelated). I also found that my mental abilities dropped - I can't go into my hyperfocus mode anymore which is a bad thing. I get irritable and confused because of random focus drops.

I am afraid because the doctor isn't probably too good (free health service, you go there on start of day and wait for your turn, in a crowded room) and she didn't talk to me much before prescribing the medicine. And I don't see improvement. Spamiln was as bad as it was but while I was taking it I seen the improvement(or perhps it was because I was taking both Pregabalin and Spamilan at the same time?) - my emotions were dull and I fould it hard to cry and easier to think logically. I don't see the effect on Pregabalin alone. Actually I had an anxiety attack a few days ago and it went away after I took a 5mg pill of Spamilan. But unfortunatelly the calmness came with bad side affects again.

Now I wonder.

Is there a point in increasing Pregabalin dose? Does it even help? Does it do anything at all? What if it makes me a worse person? Hyperfocus and inteligence were always my best qualities and if I lose them there won't be anymore point for me to live because I will be totally useless as a person.

And what if I decide to stay on Pregabalin and then get withdrawal symptoms? Should I increase the dose like the doctor says? Or should I start withdrawing before its too late and try different medicine?

Next appointment with this doctor is 29.12 but mom signed me to another doctor on 22.11. It will be my first appointment with that one but it's apparently a good doctor (you need to book an appointment 2 months ahead and you go there on specific hour). Should I stay on my current dose of Pregbalin and wait for her/his opinion or should I increase the dose like the current doctor says and risk withdrawal symptoms if the new doctor says I shouldn't be on Pregabalin? 

I also got a "dirrecting paper" to "a" therapist/psychologist but I am supposed to find the therapist by myself and I have no idea how to find a good one because I dealth with many therapists before and noone ever helped me because they ask for stuff I don't understand, such as "How are you?" and "How do you feel about it?".

I believe the best therapy for me would be chalenges such as "Go downstairs and ask for this paper than bring it to me", "Go to local libriry and borrow this book then read it" or "Travel to that city by train and visit that shop" so eventually I would gain confidence that I can deal with such things by myself. Mulling over feelings only makes it worse because the more I focus on feelings the more confusing the situation gets. I need to see there is nothing to be afraid of, not realize that I am afraid and find the reasons why I am afraid. I kow why I am afraid - because I was abused my whole life by peers and dad. But thinking about it only makes me want to cry and  am feeling hopeless. "They destroyed me. If only I had better childhood I would be allrigth now". It doesn't solve the problem. Focusing on it only makes me want to kill myself despite the fact I don't actually wnat to kill myself - I want to be capable and live a good life and I know I can do it if only I get a chance.

2

AnaMert.

Ask the doctor for a different medication and don't increase the pregabalin. If reasons are wanted, talk of the eye hues and eye itchiness.

You are a wise person to know wha you know.

Don't let them make you take it. There are many more medications you can go on for anxiety etc than pregabalin that are much less harmful.

What you say is correct.

Stick to your guns!

3

Hi

What other medications can be used for anxiety?

I myself have tried many and nothing works.

Thank you 

4

Dear Anamert,

I understand what is happening to you since a close friend of mine has a daughter with the same problems. There is a drug which is known to assist autism which I also take for my MS and this is called LDN (Low Dose Naltraxone) you will need to google and go onto the LDN website, to get huge amounts of information including how to get it. This is a drug which is not on the NHS list by NICE but download all the infor and give it to your doctor. If like mine they understand it they will give you a private prescription free which you will need to send to a chemist in Glasgow as they are the only ones who still make in liquid and capsule form.

I have found it to be excellent for my MS and my friend also gets it for her daughter and it has made her far more independant and even going to college.

You will have to pay for the LDN which costs £17 a month. Due to your disablity you should be eligible for DLA at the higher rate (around £57 a month) and also the lower rate of living allowance. (not sure how much that is)

I hope this helps

5

sorry that should read £57 per week

6

I am in Poland so I am not sure how I might be able to use that info. I checked it out and there are some information about it in Polish internet but it seems like one of the miracle drugs working for everything(I actually have one of those at home and I doubt it helps with anything but I don't really take it so I can't know for sure). There is a Polish old saying "If something is for everything then it's actually for nothing".

I am not sure how Polish doctors would take it if I suggested it. Besides - which doctor should I speak about it with? The one that prescribed Pregabalin to me, the one I am metting in 10 days or perhaps the one I am probably seeing in 4 days that diagnosed autism in me?(I want to met him so he fills some papers reguired for disability pension - hopefully I will be able to get it, I still dont have disability pension because I was hoping to get a job once I get disability rights but it doesn't seem to ge going anywhere). 

And from what I see the thing deals with issues low functioning people with autism have. I am high functioning. I graduated 2 colleges (the only help I needed were registration - I have great memory and I am smart enough to pass all exams on 1st try just by browsing a textbook so I never had to deal with social parts of university life related to applying for a retake) and I was not only capable of living alone during the few times when my parents left me alone at home for 2-3 weeks but my health and organisation skills improved. Once the constant low level sensory overload in my house stops (parents make a lot of noise - TV, music and chatter all day long) and I recover I suddenly get a lot of energy to do stuff I never tried before. 

But it wasn't the case when I had to attend tranee job in a city 25 kms away. Usually mom was dropping me there so it wasn't a problem but once they went on their vacation I was forced to either use public transportation for 1,5h one way (bus stop 20 minutes of walk form my homeno direct public transport route - meaning changing the buses in neighbor city and waiting for next one) or drive a car everyday. So I was driving. It was very anxiety inducing and when parents returned I was happy because it meant I won't have to drive anymore. 

I wish I could live in a 30 mins walking distance of workplace or at least in a place with a direct public transport line to the job place within 10 mins of waking distance from the bus stop.

My fear of public transportation is related to the fact public trasportation where I live is very rare (one bus every a hour or so, if you get late on one you are very troubled), unrealiable (buses go a few minutes early or late), every buse uses a different ticket style (you have to pay a lot if you make a mistake), shops don't sell all tickets so you have to buy some of them at the driver (When he is driving! Dangerous!) and the buses wont tell you where you are so you must know the area to get out on right bus stop. There is also not many passagers so there is noone to ask for directions.

I loved the public transportation in a big city - you could buy one tcket and use all buses and trams for a set period of time and the buses/trams were going every 5 minutes! They also were both saying and writting where you are and what next 2 stops are! And there were crowded so theer was a lot of people who could tell you what to do. Although it was kinda hard to communicate in all the noise.

7

Now I am freaking out. Basically no matter if I continue taking Pregabalin or not I already took it for almost 3 weeks so I am already addicted and when try to stop taking it I am going to have withdrawal symptoms and it is going to make a mess with my body.

And I already bought the medicine too. It was expensive. And we don't have money(one of the reasons for my anxiety is money - I am job searching becasue mom constantly tells me we dont have money and I think it is my fault). It makes me so guilty. My parents paid for the medicine and I am thinking about not taking it because of my idiotic thoughts? What if I get another medicine and it doesn't work either? And what if psychiatrist is going to get angry with me and say not to listen what someone told me in the internet? I hate conflicting information!

If it doesn't help I end up addicted to a drug that doesnt help and if it helps I either have to take it my whole life or experience withdrawal symptoms that make it worse than my mood was before I was taking it. Right?

I am so worried I couldn't sleep last night. Why did I go to the doctor anyway?! Why did I decide to take the drug in the first place?! I knew it is going to end this way! I just knew all psychiatric drugs are dangerous and I shouldn't take any! But I wanted go get help... There is really no hope? I will never get rid of the mood issues?

Maybe I don't have anxiety but depression? To be honest my worries don't seem like anxiety - I don't experience symptoms such as shaking hands and fast breath. I experience teary eyes and blank mind as well as thoughts: "it won't work, I can't do it, noone is going to help me, it will be bad, unpleasant, painfull". It makes me want to kill myself despite not wanting to kill myself. I mean - usually I am quite happy with my life and confident with what I do but when dad yells at me or when I am looking for job etc. the bad emotions overwhelm me and I just want it to end and I am in bad mood for a few days afterwards. 

8

Hi AnaMert.

I understand what you're saying but it sounds like you do have anxiety from the stress of the buses etc and the way things operate.

I think the best thing is you take Steven's advice and download all the information you can find on the LDN (low dose naltraxone) and take it to the doctor. I think you should reduce the pregabalin because it is a bad drug, but you didn't say what you've tried or the one you have at home.

I also understand you have paid for the drugs, but there is no point taking them if they're no good for you. You need to forget the money side of it as it sounds like your parents want to help, and if you explain things to them and to the doctor, or doctors if it takes more than one, then hopefully things should get better for you.

9

It's the first drug I ever took (except for Spamilan which I got at the same time as Pregabalin but caused very bad side effects to me so I stopped taking it after a week) and while I don't see it helping me yet but it doesnt seem to have bad side effect either. I dont see the green tint in the morning anymore and my eye stopped itching (it was probably caused by something else since it lasted only 3 days) and because I did some mental excercise and found a way to deal with the anxiety. I told myself "You are afraid? It isnt fear. Let me show you what is fear. It is middle of night. You need to drink glass of warer, don't you? Now get up, go downstairs without turning the lights on and get the glass of water while imagining all possible dangers that could be there, likea spider or a burglar or just something unknown n darkness or whatever." - I forced myself to do so and I felt fear but it made me calmer about what I was afraid of which was taking the Pregabalin. Now whenever I get anxious I make myself feel fear by imagining I die or something and I can think clearly again. Today I managed make a phone call and tomorrow I have a job interview related to it. Just thinking about the phone call made me feel fear but I told myself "Now you are scared. Good, very good. It's a good thing." and "Now get the phone and gei it over with." and I successfully made the call.

Now I am only worried because the company works 7-15 and I hate waking up so early in the morning. I wonder if I can make it 9-15 with 6h shift instead of 8h. Its a trainee job from job centre and last time I was at trainee job from this job centre I worked 6h a day, 10-16 but I can't know if this company agrees to it too. What if they hire me and tell me to work 7-15? Can I tell them in the job interview that I want to work 6h a day like in my prievous trainee job, that I am very effective and fast worker and learner and and that I am totally unuseable early in the morning so if they decide to hire me they can't make me work 7-15? The pay isn't good too. Minimal wage is 1800PLN and trainee jobs pay about 900PLN with the same amount of work. So there is no way they don't agree, is there? It would be unfair for me. They dont pay my wage too - job centre does. They just have a free worker that they are supposed to teach and then hire after the teaching period is done(they can hire me then paying mere 20% of minimal wage because goverment pays them back 80% of my wage due to disability).

10

You have found a very good way to deal with your fears, AnaMert.

Well done!

You should be very proud that you have found a way and pushed passed to call and arrange an interview!

Good for you!

You can ask at the interview if they have any later positions. It can't hurt to ask. If they ask why, just tell them it is more conbenient and easier for you to begin a little later.

Hopefully they will be understanding, and the worst they can do is say no.

I wish you luck on your interview, but somehow i think you'll be fine.

Good luck in everything.

11

I don't really remember anymore how the interview went or rather I don't want to recall it but I was crying for 4h afterwards and couldnt calm down.

I don't know what to do anymore. Perhaps I will ask doctor about the LDN. However in my country they are only aviliable in 50mg pills so it will be pretty hard to get low dose. Do you think drugstore can make smaller pills out of them or will I have to do it by myself? There is a recipe in a website but it seems pretty hard - you need a precise weighing machine and some substance acting as filler for the pills which I don't know how to get.

I was never good with chemistry and cooking.

It is also very expensive and not refunded. Well, it isn't that expensive if you count it per how much a box lasts (about a year of low dose) but it is expensive when you are unsure if it is going to help you because in case it doesnt work you throw a lot of money away. I don't have money to waste.

12

I take it things didn't go well then.

I'm sorry.

Maybe go to a drug store and say i'm going to ask the doctor to try me on these pills but if i need a smaller dose can you make it smaller?

But yhe doctor would know what dose you should try and go from there so maybe he might want you to try 50mg.

I understand about throwing money away on medications that don't work. It happens all the time to many people, myself included. Unfortunately things are trial and error and there can be a lot of error before the doctor gets it right.

Talk to your doctor about the LDN and tell him or her what else has happened.

13

The easiest way is to get the LDN in liquid form so you can measure your daily dose easily. I am guessing you are in the USA and this is the country that mainly started the LDN for MS.

If you go onto their website they can explain exactly how to obtain it in the form you want and the nearest doctor or chemist to get it. I cannot comment on your saying its expensive as I dont think it is here but you have to weigh up what the adantages are compared to the problems without it. I have been taking it for 15 years not and would not miss a day. It will take a month or so to determine what dose is good for you as many start at 2.5ml and slowly up the dose until they get the required level. Very few go above 4.5ml which is why that is the dosage that the pills are made up to. I will look up this recipe and see if I can help with that but it seems strange you cannot get it in smaller dosage.

14

Not sure if what I am saying here will breach site regs but to convert your 50mg tablets in liquid form is very easy:

You can convert a 50mg tablet into low dose naltrexone (LDN) simply and easily. To do so, fill a graduated cylinder with 50 ml of distilled water (unlike tap or spring water, distilled water contains no impurities that could potentially react with and thus reduce Naltrexone’s effectiveness). You can also use whatever measuring device you have to measure out 50 ml.  Pour the water from the graduate cylinder into a 4oz glass jar; then drop in one 50mg tablet.  The tablet will mostly dissolve in about 2 hours.  Note that not all of the tablet is soluble in water so instead of yielding a clear solution, the result will be a cloudy suspension.  One ml of the (shaken) suspension will contain one mg of Naltrexone or another way of putting it is that you have created a 1 to 1 ratio of water and tablet. You can use a graduated baby medicine dropper or 5-ml syringe to measure out the dose you need.

15

only just realised you are in Poland sorry about that, you do however come across as very intelligent so the makeing of the LDN should not pose a problem. I am also not sure what the disability rights are there but if similar to the UK it does not matter whether you are working or not you are still entitled to the award. Keep pushing that as it would help in a big  way to pay for medications. Keep your chin up hun and never give in

16

How long can something like this be stored? Out of 50mg I would get enough liquid for 10 or more days and the distilled water I found should be used within 16h after opening the bottle. Does it affect the mixture? Does keeping it in fridge prelongs the time to a few days at least?

17

clearly it depends on what you take which should not really be more than 4.5mg you need to start around 3mg so the mix will last 16 days. It has been shown the mix is good for at least a month in the fridge so you can mix up two lots per month with no problem just ensure you shake well before taking. Hope this helps hun and all the best

18

I went to another psychiatrist, told her whats going on, that I don't want to take Pregabalin because it doesn't help and I heard bad opinions about the medicine. I also told her about issues with Spamilan and that it was helping me but the side effects are unbearable. I forgot to say about LDN because she stressed me out by asking "what exactly is going on" and refusing to read whet I wrote about "what exactly is going on"(it is easier for me to write than speak) because she wanted to hear it from me.

She said to withdraw Pregablin slowly and prescribed ParoGen(Proxetinum) saying "its a safe medicine with little side effects". After reading about the new medicine I discovered it has even worse opinions than Pregabalin and the side effects and withdrawal symptoms are really bad. But I decided to take a half of pill to give it a try anyway. (I also decreased Pregabalin dose from 225 to 150 that day but I did it a few times before and experienced no changes so I doubt it is related)

 

The effect was similliar to Spamilan - I couldn't cry. But the side effects were way way worse. At first it wasnt so bad - highened senses, huge pupils. But after a few hours it started. Headache, upset stomach, insomnia due to highened senses, restless legs - I couldnt sleep all night. It reminded me of the slepless nights I experienced when I were a kid (I had huge problems falling asleep when I were a kid due to highened senses and restless legs back then). I couldnt fall asleep whole night and in the morning intense sweating started and I got a fever. It was terrible experience - my body apperently tryied hard to get rid of "a poison". It calmed down a bit after 26h since I took the drug but I experienced insomnia the next night too (I could fall asleep after a while but was waking up every 2h and had trouble falling back asleep) and muscle twitching started then too.

It's a common sense muscle twitching is related to magnesium deficiency so I took magnesium and it stopped. It's currently my 4th day on the magnesium(and 6th day on 150mg Pregabalin). I experience upset stomach (I probably have to try different magnesium - the few magnesium pills I had in house didn't make my stomach upset but the newly bought ones of different brand do) but mentally I feel better. It's not matter of "My body wants to cry but I am unable to" like with the Spamilan and ParoGen. My body is actually calmer. I still feel like my body wants to cry but the feeling is half weaker and I am able to control it by thinking "just don't think about it". 

I probably just have magnesium deficiency due to all the stress.

Or perhaps Pregabalin was causing the crying.

19

It is not necessary to get the GP to prescribe for LDN as you can get a prescription online for it as long as you know where to send it to get it made up for you. If you need any further infor its all there on the LDN site. Best wishes hun

20

If a doctor prescribes it it will be 70% cheaper due to health insurance.