Drug Ratings for TEGRETOL

Average Rating: 3.3 (242 Ratings)

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Key to Ratings: 1=LOW (I would not recommend taking this medicine.)
5=HIGH (this medicine cured me or helped me a great deal.)   

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    Charts & graphs: Reviews Summary for TEGRETOL  | Top 10 Adverse Effects (reported to FDA)

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 5  mood stabilizer A really bad breakout just on my face it wasnt zits but it was like acne and I tried everything to cure it I never thought it was my medicine until my refill ran out and I had to go like 2 or 3 weeks without it while I waited on my appointment . my face cleared up completely. Now im back on my medicine and its back.. I also have really bad muscle jerks on thos medicine. Other than that it is the best medication for me I. Have tried literally everything else .. F 26 1 years
 5  to control my epilepsy I've had epilepsy since I was 14yrs old. It helps to control my seizures but I still have them! Sometimes up to 3Times a day! I've had Acne since I was 13 and was wondering weather it was this giving me it?! I'm seeing a specialist who specialises in dermatology end of this month so my Doctor wouldnt of let me if it was my meds making my skin like it was don't u think? F 28 10 years

 4  Trigeminal neuralgia short term memory loss, trouble with concentrating and word retrieval, headaches, nausea tegretol is controlling the pain to a degree. After being on it for 2mths. I had breakthrough pain. Since I was at the highest dose I could tolerate (900mg per day), lyrica was added to my daily meds. The combination has helped a lot. F 56 6 months
300 3x

 2  Trigmental neurogia I woke up on Saturday and I could not walk in a straight line and could not function. I called the on call doctor and he told me to stop taking it and take 1/2 pill twice a day on Sunday. Monday I took 1/2 pill in the morning and I was cold and then discovered I was weak. I called the doctor. He told me to stop taking it and call my doctor tomorrow. My doctor was not in. I do not have as much pain but the side effects of this medicine are not good. I need to not take this medicine or adjust the dosage. F 62 4 days
200 2X D
 3  occipital seizures after stroke Initially I felt tired and very foggy mentally but that passed after about a week. Now I have a loss of libido, but most troubling is that I am having sharp pains in my head, I have cut back my dosage to 100mg at night and that seems to help a bit. My occipital seizures have diminished but are not completely cured. M 57 30 days
200mg 2X D

 2  neuropathy of mouth Wired up, couldn't relax, but sleepy for brief periods. Bad indigestion, stomach stayed bloated & hard. Am hypoglycemic, adversely affected blood sugar levels. Nausea with eating, headaches, food not tasting right. Did help with burning & pain. Decided side effects not worth it. F 58 8 days
200 mg x2

 5  trigmetol neuralgia No prob started on 100 twice a day n moved up to 600 now in 200 Mg tablets bits sick n bit of headache to start but it's stopped pain so far n that's all that matters at moment; F 42 3 weeks
 1  bi polar Severe dry mouth F 46 2 years
 5  Epilepsy No major side effects had trouble concentrating as I do now. Became a little depressed. I feel the medication has definitely changed my life for the good. F 26 10 years
1X D

 3  polyneuropathy Dizziness, sleepiness, problems focusing mentally, problems concentrating, forgetfulness, and constant double vision. I feel like someone who is drunk. Even though this medication does help my neuropathy to a certain extent, the side effects have changed my life negatively. I cannot do any tasks, and I sleep most of the day. M 49 6 months
900 3X D
 5  Epilepsy constant tiredness since childhood, low concentration,anxiety, mood swings, memory poor Controlled my epilepsy when other drugs didn't.Having taken it for a long time, i have noticed various side efects over the years. The ones that effected me most were tiredness and anxiety. Anxiety and irritability are problems on thse meds especially if you don't keep routine, drink lots of water etc. I have been cutting down my dose to withraw after longterm use, i'd like to know what normal is, I have worked and studied all my life and achieved a great deal, though it has been a struggle at times. I look forward to being free of meds. F 36 25 years
400mg 2X D
 3  bipolar and seizures complete loss of taste What is worse, mania or no enjoyment in eating? F 55 8 weeks
300 2X D

 3  seizures Migraines ,nausea, sleepy , head feeling very heavy . Tongue tied , F 46 8 years
 1  mood stabliser been taking it for 4 years, casuing awful memory probs and worsened dyslexia. . gradually reduced over this year evry 3 months- memory is amazing and dyslexia isn't that bad any more. moods- normal . down to 100mg now. pts should be warned that taking this medication it will casue memory problems and forgetfulness, once off the meds the memory will come back !! F 30
400 2X D
 4  Seizure disorder After a few years of taking tregretol I now feel as if I'm getting a seizure but it doesn't actually take place also, I feel depressed more often than normal F 19 4 years

 3  Epilepsy Drowsiness Unsteadiness Vomiting F 15 10 months

 4  Seizure disorder nausea, fatigue (after 4 hours of taking dosage I pass out for a few minutes), metallic taste in mouth F 25 2 years

 5  Bipolar II Initially and with dose increase: anxiety, headache, pressure in temples, very mild nausea, constipation. When trying to go above 600mg: persistent headache, metallic taste in mouth. Constant side-effect: jaw clenching. This seemed to take a while to kick in. Started on 400mg and went to 600mg after about 4 weeks. It lifted my depression quite quickly, but during both dose increases I got anxiety. The moodswings aren't gone, but they seem "shallower" and less frequent. Everything's much milder than it was and more manageable. It helps with sleep; even when "up" I manage 5hrs a night. After 6 months I can barely tell I'm taking any medication, the side-effects are so slight. Really pleased as I had a nightmare on lamotrigine. F 35 6 months
600 2X D

 3  Trigeminal neuralgia Extreme fatigue and complete loss of taste which led to loss of appetite and loss of weight. Continuous salty taste in mouth. Drinking water is like drinking sea water. Am going to discontinue next week hopefully my taste will come back . Apparently diagnoses was wrong , but it did help me get rid of the continuous sharp pain on my head. F 34 1 months
 1  Bipolar I was just not getting back to myself with a manic to a depressed state. Doc switched from lamictal to this drug. Was tired,dizzy, thought process was bad. 7 day in I went totally 360, went into being dis-associated. It was bad, never been in that state before. Went off of it. I was hopeful that it was going to work. Even two days in, I didn't feel right. F 43 8 days
200 2X D
 4  non-cardiac chest pain short-term memory problem (feel profoundly stupid, forget what i am saying and lose words), loss of libido, tingling in tongue doctor prescribed it off label for non-cardiac chest pain. went from having severe pain for hours several times a day to having 0 to 2 short attacks a day F 41 1 months
100 2X D
 3  Dyskinesia Fatigue, sore neck, heard sounds differently (they sounded flat), had a bit of trouble with short-term memory. These were persistent for the first month and then went away. Now there are no side effects. F 37 3 years
200 MG 2X D
 3  bipolar I just started 2 months ago i feel calm but im getting werid sounds in my ear can anyone tellme if this will go away F 30 2 months
 3  BLACKOUTS AND MOODSWINGS I sometimes get the giggles, but i cannot giggle as much as I would like. Seemed as if my dyslexia has worsened. I tried to study on this drug..hahahaha man..I got so confused when I wrote the test..... I feel very calm though....which is very good. I don't get anger burst outs like I did before. Just I am wondering, how can I improve the memory loss problem on this drug, and I wonder why it is giving one such a problem? I have to study like 3x harder than I did. F 25 4 days
200 MG 1X D
 5  Trigeminal Neuralgia Exhaustion, confusion, word recall difficulties This drug has been a life saver! Very much worth the side effects as it has given me back some of my life. F 46 4 months
200 mg 2X D

 5  epilepcy/grand mal seizures The first time I took tegretol I acted drunk. It made me feel loopy, but as time went on my body adjusted. Over the years side effects have been fatigue, low libido, and now more memory loss...looking for the right words, remembering where I put things, etc. Now it is low sodium, anemia and lower white blood cell count (not an issue right now but could be later). No bone loss from last bone density test. Be careful with antibiotics they raise tegretol levels, especially erythromycin. I started taking Tegretol when I was 23 years old and basically was given my life back. I was having seizures every 7-10 days. With tegretol I have had only 1 seizure in 20 years . I was monitored for aplastic anemia in the early days which they have now stopped testing for. I have had two beautiful, healthy daughters even though there were low risks involved. At one time I was up to 1200 mg/day. Now I am on 800 mg/day. It has helped with side effects. F 32 years
200 mg 4X D
 5  Epilepsy I took carbamazepine to treat my relatively mild temporal lobe epilepsy from 1995 until 2011. I cannot say I had any bad side affects. I lead a completely "normal" life. My concentration and memory were never good (but not bad either) but at least my seizures (petit mal) became less and less over the years. I think the drug really helped me. However! After not having a seizure (petit mal) for over a decade I came off the drug over a period of 3-4 months. Now I'm not sure why but my sex drive (after about 3-4 months off the drug) went through the roof! I was like a 17 year old boy. Then one day without warning bang I became impotent! Over night it all stopped (That would be 8 months after I came off the drug completely). The desire is still there but I no longer can function without the other drugs (and they are now starting to loose their effect)!!! I did find my concentration and memory and confidence also improved considerably after coming off the drug (well the confidence has taken a battering since the new thing) I do find it weird because carbamazepine can cause ED but I never had that problem while on carbamazepine. It was only after coming off carbamazepine that the ED problem started! However ED can be caused by loads of other things(I have been checked out from head to toe. All OK) so its probably a psyc thing (surely coming off carbamazepine did not cause my ED, could it?) Hope this helps someone (I cannot find anyone else with similar problems). M 44 16 years
400mg 2X D

 3  epilepsy Mental anguish;emotions too available. I have also experienced significant depression and anxiety,which led to bleak and unusual thoughts ;vanity.Folicolitis on the back of my head.I also have unusually large breasts, considering I am a man. However,I am not entirely certain that tegretol is attributed to this. Memory loss.Intellectual decline.Initial hives and rashes,which I no longer experience. M 38 10 years
 4  sezuries Memory loss, dizziness fatigue and no sex drive at all sense I've been on tegretol. I thought maybe I was just getting up in age my wife started doing research because it was affecting us sexually frustration. So if anyone has any suggestion to another med without any sexual issues but also still does the job for my sezuries im open to new suggestions. I would not recommend because this affects a great deal of a mans man hood. M 42 3 years
200x2 dly

 2  Epilesy Foggy, tried, memory lose, weight gain. It also made life very difficult as you can't seem to remember things to keep organised. Sex drive also decreases. For me it also numbed allot of emotions which is the worse thing. I spent 2 years slowly coming off the drug and my emotions seem exaggerated as allot have been suppressed for so many years. I now don't take any medication and feel much happier and have more empathy for everyone. F 36 10 years

 5  Trigeminal neuralgia No bad side effects other than the occasional loss of words and stuttering at times. Get tired easily and at the beginning, had slight blurred vision F 37 5 days

 1  post herpetic pain Emhanced sideeffects like difficulty in breathing joint pain abdominal problems F 65 2 days

 3  Seizures Very sedated, confused, lack of emotion, nausea. Change in hearing noticed right away, everything sounded slightly off and increased hearing. Painful swollen gland on neck. Hangover like feeling upon awakening. Honestly this drug did its job very well to stop my seizures. I am only taking 400 mgs, which I was told was a pretty low dose. Either way I have been feeling mentally and physically more sick on this AED. I have no idea why but I am giving the med another month and if I still feel as mentally off im dropping it. Keppra was far less harsh for side affects so if your looking for a decent drug I would assure you to try Keppra first. M 25 1 months
200 MG 2X D

 5  status epilepsy No sex drive whatsoever M 43 2 years
1000 mg
 5  seizures and bi-polar I have no side effects. I guess if you fell 20 feet hit a 10 foot fence and rim of a concrete pool and suffer from seizures and physcilogical depression this drug will certainly work for you. This drug works wonders if you have a multi issue. This drug works if you have a multi issue. Like Seizures, Physcilogical Depression and Nerve damage. M 40 6 years
400 mg 2X D
 3  Bipolar II Disorder It is nearly impossible to focus on reading, and I have difficulty calling to mind the words I want. I am a law student, so this is detrimental. Basically, my brain just feels slower and foggy. I am also tired ALL the time, but I was fatigued before so it may not be from the medicine. The medicine helps significantly with my depression! This is the first medicine that has controlled my debilitating depression. I went from constant suicidal bouts to almost no sadness ever. However, there is a huge tradeoff. I feel like I lost a huge chunk of my IQ. I was actually more productive and successful when battling mood swings than I am walking around with a foggy and unfocused mind. F 23 8 weeks
200mg 4X D

 3  Seizure Have very bad tension headache and anxiety initially while on 400mg. Bad back paresthesia after 2 months. Headaches got better after adjusting dosage. Taking benzo to help reduce anxiety. Seizure is well controlled. F 37 10 months

 5  Trigeminal Neuralgia Metallic taste in mouth, diarrhea This drug has completely stopped the TN attacks and did so practically immediately upon starting on it. Initially I was on a combination of Neurontin and Tegretol, but that caused a lot of dizziness, so I was taken off the Neurontin. The side effects did not start until I was on Tegretol for a month and a half. The dizziness is gone. Sidenote: I also have MS, which was diagnosed 8 years ago. TN did not start until last year, at age 53. I currently have no other functional problems with MS. I don't know if the TN is associated with my MS. F 54 2 months
200mg 3X D
 1  trigeminal neuralgia Extremely tired, drowsy, severe headaches, confusion, blurred vision, red blotches on face, chest, back, (these went and then came back), flu-like symptoms - fever, aches, shivers and loss of taste. Could not work or function normally. Blood tests revealed lowered white cell count and raised liver functions! Pain from TN which was not continuous stopped completely after 12 days on medication - 1 week on 100 mg once a day, next week 200mg once a day, then to 200 mg two times a day. However after 3 weeks the headaches were constant, flu symptoms began. GP immediately sent me for blood tests and stopped meds on receipt of results. Been off med for 9 days now, TN pain not returned so far. Further blood test shows white cell count normal, liver function improving but still severe lack of taste which is extremely unpleasant and depressing. F 54 25 days
200 mg 2X D
 4  trigeminal neuralgia Like many others I have the feeling that I am a space cadet. So far, I have not been too aggravating to my family, friends and co-workers with it. I try to make a joke of it. I am seriously bothered by any lighting. I feel like living in a cave is the answer, but not very practical. When I first began in January, 2012, the pain from the cold was unbearable. I could quickly understand why it is called the suicide disease. I have studied about the different procedures to relax the pressure of the blood vessel on the nerve and decided that taking the medication and being a space cadet was the better option. The condition is disabling and you just have the accept the lifetime condition. I still work, drive my car and have a social life, but none of them are the same. I have had to cut back on work (took my social security to cut back my hours), don't drive too much after dark because of the lights, and tire out a bit earlier (still can sing karaoke but not in extreme heat or cold) I find that if I do not take my afternoon dosage I experience a more difficult time in the evening (more numbness and pain). Not much issue with the burning at all now. I hope to not have to increase my dosage. And I pray that my friends, family and coworkers will continue to understand the trigeminal neuralgia and not keep saying I am developing dementia or Alzheimers because the effect of not being able to think of words and repeating myself give them plenty to cause them to think I am at age 64. F 64 6 months
200 mg 3X D
 1  possible trigeminal neuralga day after didn't feel as if I was awake all day and kept falling asleep,no energy, very slow,had no strength in lower arms and legs felt almost tingly, had to really think about what I was wanting to say, had strange type of headache over forhead, temples and upper face-pressures and strange sensations which moved about, felt like I wanted to vomit-the feeling you get in your mouth just before you are sick,not nausea though. After 5 days ended up at on-call drs in evening with bad head pains, violent shaking-not shivering-sweating and really hot and sweaty but with a normal temperature and vomited several times. Have not been able to go to work. A week later am feeling a bit better-still have all the same symptoms but to a lesser degree. All this from only 2 tablets. Had blood tests 2 days ago and awaiting MRI. GP and on-call dr don't think its due to the Tegretol as it should be out of my system by now, but having read your posts am not so sure, am seeing GP again tomorrow for blood F 43 1 days
100mg 2X D

 3  Severe migraines 3-4 days a week I've only been taken them twice a day for past 4 days but thinking about stopping them against my doctors advice to help stop severe migraines,in this time I've become a zombie,foggy,memory loss,extremely tired can't answer people straight away,feel stoned all day n wonky on my feet,I'm constantly apologizing and explaining to people to just have some understanding n bare with me until I'm over side effects. Doctor told me it gets easier but I feel do you get over the effects or do you get that use to them that you think it's normal? F 26 4 days
 1  Trigeminal Neuralgia Rash, Breathing Problems, Disoriented This drug almost killed me. Thank god I went into my doctor as soon as the rash started. I had an allergic reaction and developed Steven-Johnson Syndrome and am now being treated for that. Please be careful with the med. F 58 14 days
200 mg 2X D
 1  Bipolar disorder, BPD MAJOR issues getting used to this medicine. almost got put in the hospital on the 4-5 day of this med, I started feeling like I had overdosed on speed and also having the worst manic episode of my life, racing heart, blood pressure through the roof, I felt like I was going to die, but honestly I couldn't sit still or lie down. Also either took another week or so for the side effects to wear off or it pushed me into a manic stage. Also gave me an uncontrollable twitch in either of my hands that took a week or so to wear off. F 21 6 days
200 2X D
 4  Borderline Personality Disorder It makes me feel like a zombie (not sleepy though, just out of it completely), and causes my Depersonalization symptoms to get a lot worse. So far, its the best medication I've had for mood swings! Works great for that. F 21 7 months
100MG 1X D
 2  seizure disorder psoriasis from rash; photo sensitivity; weight gain of 5 to 8 pounds; very mellow; reduced sexual responsiveness; finally, low white and red blood count, increased liver enzymes prescribed after one seizure, feel it was over-kill. It works though. F 54 16 months
300 MG 2X D

 2  Single seizure - Weight gain (originally 66kg, now 80kg) - Tiredness - Increased appetite (constantly hungry), having more snacks M 23 16 months
100mg 2X D
 4  Epilepsy After reading so many negative reviews of this drug I was very hesitant to use it..I have been on it a month and only really experienced some short term memory problems (forgetting words) and some mild tiredness. So far On the good side of things i sleep like a log now, seem happier and contray to many other people my sex drive has sky rocketed lol i think the drug has a bad rep but is very tolerable :) M 26 1 months
200mg BD
 4  Bipolar II Nausea, drowsiness (both only lasted around 7-10 days) I started with 2x200mg and noticed a noticeable effect after a week but shortly after the hypomanic episodes came back. Raised the dosage to 3x200mg for another 2 weeks, and the positive effects wained again. Now, I'm up to 4x200mg and I've just finished the side effect hump (which seems to last 7-10 days after taking the meds), and I'm hoping to have a more consistent positive feeling with the higher dose. I was on Lithium before this (which had no beneficial effect on me), and I have to recommend Tegretol for its less severe side effects. On the negative side, the positive effects seem to be hard to sustain a lower dose. M 37 6 weeks
200 mg 4X D
 1  Trigeminal Neuralgia Immediately noticed a change in my hearing. Everything sounds as if I'm listening to a recording that has been slightly slowed down. Also experiencing excessive tiredness and fatigue. The change in my hearing was the reason I started to research side effects of the drug. I figured such an extreme side effect after only 2 doses warranted concern. My prescription calls for 200mg 3x a day. I will experiment with 2x a day for the next few days and see how it goes. At this point, I have experienced zero relief from my TN pain. M 43 2 days
200 2X D
 1  Nocturnal Epilepsy Initially short term memory loss, becoming more severe with time, and stomach acid. In year six and over a 6 week period I developed severe symptoms i.e. breathing became very difficult, pains in the calfs and arm muscles, followed some days later by drunkeness feeling, unable to walk in a straight line, and rapid onset of deilirium and feeling like I was losing my mind!. Extreme stomach acid. Now off tegretol although some symptoms have persisted and are being investigated. SIADH suspected. M 51 10 years
600mg 1X D

 2  CRPS Decreased libido, headaches, mouth sores, weight gain, decreased appetite, joint and muscle pain, muscle twitches, menstrual cycle gone, constipation, sleepiness, short-term memory loss. Be very careful you don't drink GRAPEFRUIT JUICE - very bad side effect. The nerve pain did decrease but the side effects are overwhelming. Would not recommend for nerve pain but suggest you look at amytriptaline or topamax, all are bad. Do your homework and trust yourself - doctors are wrong 50% of the time! F 36 1 months
200mg 2X D
 4  Hypomania Pitch change -- my perfect pitch became slightly off, I would hear notes half a step differently(lower) than before. Wouldn't bug some people but I noticed it very quickly. None M 26 3 months
Unsure 2X D
 5  myo-facial pain major hair loss, cold hands finally, pain in face and neck has gone away. major pain kept me awake at night. tried pain relieving cream (prescription) and narcotics to no avail. tried land therapy also. aqua therapy has helped, but nothing like the tegretol (brand name). F 52 4 months
300 mg 3X D

 1   to the person who emailed me...(posting date 3/8/2011) Please post your question here, so more people may reply. It's a good question, that many others may also have. F 44
1X D
 4  Bi-Polar numbness in left hand, tightness in chest, tired after taking in morning, body feels strange all over after taking in morning, skin is sensitive. Around April or May I was diagnosed with Bi-Polar and Anxiety Disorder. I have always had a problem with depression but it wasn't until I moved away from my home at 18, 4 years ago, that I started having real problems with the mood swings and these past 2 years with memory and focusing problems. My memory was so bad that I have many notebooks filled with lists and notes just to keep track of simple things. My anxiety was bad enough that after a few days on a new job I had to quit. With Tegretol I have noticed a huge improvement in my mood, motivation, and overall well-being. I can focus on projects again and remember things easier. The only problem I have with it is that my left hand is numb a lot and my chest is tight. I'll mention those to my doctor soon. F 22 4 days
100 MG 3X D
 4  TN 1stone weight gain so far, water retention mouth ulcers, bruises all over woke with black eye last night, urge for apples, flushed face in the evenings breasts gone up two cup sizes and constant bv felt like iv had a cold since been on them. my whole head would go in to spasm and last for few mins about 15 times a day where i would drool and not able to talk i would look like i was avin a stroke these tabs have controlled it so much better only have a mild couple now and the feeling where i feel like im about to av one then it goes away also noticed that my back pains av considerably decreased but skin still numb to touch ps my whole back was in spasm. i dont feel as afraid to go out on my own now xx F 29 4 months
200MG 2X D
 3  PHN after shingles felt absolutlely drugged up to the eyeballs on this!! lost all capacity to function! slept all day..couldnt go to work,couldnt speak properly, couldnt find the words i needed, loss of memory..loss of balance,no way could i even atempt to drive, i was so confused, i put my glasses in the fridge, kept repeating myself..it was horrible!! it did take away the pain instantly mind...but im going back to the doctor to see if i can change to another drug as this one is way to trippy for me!! F 37 1 weeks
200 3X D
 4  trigeminal neuralgia Dizziness, NAUSEA, weight gain, memory loss, lose train of though easily, tired I was diagnosed with trigeminal neuralgia back in 2004 .This was the first drug I was placed on & it was like a miracle. I guess I didn't pay as much attention to the side effects b/c I was so grateful this got rid of the pain. My dose kept increasing until it just didn't work for me anymore. Tried on another 5 medications and finally in 10/2009 I had microvascular decompression at Univ of Pittsburgh as they are supposed to be one of the best. Surgery was not a success. Left me deaf in one ear, with a constant sour taste on the side of the surgery, & weakened swallowing. Resorted to Botox injections from my neurologist, which decreased amount of attacks but not intensity. I take dilaudid for bad attacks which I just hate everything about. My neurologist (he is also head of the pain clinic) suggested I try tegretol again. He said stranger things have happened & sometimes it can work again. It has been 7 years so I figured why not. Even 6 months of reprieve would be worth it. I cannot believe how sick I am the 2nd time around. Still nauseous after 6 wks & only on 200mg bid. I did have 2 bad attacks in this time, but that is way less than usual. I want to eat everything in sight. I think it is b/c the type of nausea it causes is like the nausea that comes from being hungry. You think if you eat something the nausea will go away. I started taking 6.25mg-12.5mg of phenergan bid for nausea & it helps somewhat. F 40 6 weeks
200 2X D
 1  Epillepsy Extreme exhaustion. I have to pump myself full of dangerous levels of caffiene just to barely make it through an 8 hour work day. I've been on it so long that it is hard to tell what is a side effect and what it just the way I am (been on it since I was 5 or so), but I've noticed on here that I'm not the only tegretol user suffering from memory, concentration and depression issues. Also, no pain meds work on me- not even prescription ones. F 26 21 years
2X D
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