1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Prescription Drugs Use in ME/CFS.

Discussion in 'General Treatment' started by taniaaust1, Jun 3, 2012.

  1. Bunchy

    Bunchy

    Messages:
    94
    Likes:
    16
    UK
    Nielk,

    That's great - so happy for you. Are you feeling much better now? Hoe dod they detox you appropriately????

    You mentioned other drugs that can be substitutes for benzos that are not addictive and dangerous?

    Can you list them please?

    I'm finding my taper rough going at times and have heard Lyrica can help by converting the glutamate to GABA, allowing for the taper to be smoother.

    I might ask my doc about this next week but am worried of further weght gain which is apparenlty a comon side effect.

    Thoughts anyone?

    Love Esperanza x
  2. Nielk

    Nielk

    Messages:
    5,244
    Likes:
    5,150
    Queens, NY
    They switched me to the medicine "Tranzine" when I got there in order to taper off of that which took about two weeks. They had to monitor my blood pressure very closely because there is a tendency towards high BP from withdrawal of Benzo medications. Mine was high for the first 10 days and they gave me BP lowering medications for that period.
    I am now on Trileptol which is a "safe" medication. It is in the family of anti-seizure meds but does not have the "addictive" component. There is also Tegretol which is in the same family and is "safe" as far as addiction is concerned. Neurontin, if it works for you is also good.

    They first tried Lyrica with me but, I had adverse reaction to it so they discontinued it. It might be a good option for you though. I just happen to be sensitive to it myself.
  3. Bunchy

    Bunchy

    Messages:
    94
    Likes:
    16
    UK
    Hi Nielk,

    How are you sleeping now? Any better? I hope you are still feeling better off the Klonopin.

    I am having some luck with Vistaril - it seems helpful for anxiety and sleep but I am only taking it when absolutely necessary as like everything else, it could lose its effect if used every day.

    I'm doing a taper that Fred gave me and am getting lower and lower on the benzo - some days bad still but some days really good. Hopefully, I like you, will be off the things in the near future :) Never again!!!

    Love Esperanza x
    warriorseekspeace likes this.
  4. Nielk

    Nielk

    Messages:
    5,244
    Likes:
    5,150
    Queens, NY
    Never again - is right!
    What a nightmare this whole trip has been.
    I wish I had known what I was embarking on when I first took my first dose of Klonopin.
    What I know now - which I wish I had known than - is that Klonopin is an ADDICTIVE drug to many people who take it.
    For those people, getting off this med is so difficult. It's almost impossible to do on ones own.

    My sleep is not great. I was taking Ambien before because the Klonopin was not doing the trick anymore.
    I had to discontinues the Ambien too because it acts similarly to the Benzo family.
    I sleep much less now but am more rested when I wake up.

    I still struggle from withdrawal symptoms like anxiety for which I take Trileptal. I also suffer from sensory issues but then again - I have my life back so I can't complain.

    I wish you continued success with your taper from Klonopin. I know how hard it is and for that you are a hero.:)
    warriorseekspeace and taniaaust1 like this.
  5. Bunchy

    Bunchy

    Messages:
    94
    Likes:
    16
    UK
    Hi Nielk,

    Does Trileptal help with the anxiety much? That is my worst tolerance w/d and tapering symptom:(

    I was thinking of asking my doc for Trileptal or Carbamazepine when I get lower with the taper and see if it makes it any easier/faster. Any reason Trileptal might be better than Carbamazepine or vice versa?

    What sensory issues do you suffer from? Have they got worse/improved/stayed the same since your detox?

    YOU are the hero and you give me hope :) - great to see a success story and so happy for you that you are free of the benzos at last.

    Love Esperanza x
  6. sandgroper

    sandgroper

    Messages:
    71
    Likes:
    35
    west australia

    SOrry to hear you had such a rough time with klonopin. I had come off it in the past with no problems,
    Then I restarted and increased it fro .05 to 1mg and stayed at that level for years. After a sleep dr suggested o reduce it back to .05 I did so gradually but I also was changing 2 other meds over a 6 month period and he wanted me to add prothiaden. I started to get symptoms so stopped the prothiaden which was supposed to replace the klonopin as sleep med. It was hard because I was trying to manage a trial of CPAP and deal with family issues. My mother died and I was unsure whether I was experiencing grief or sleep problems due to not enough meds.

    In hindsight I may have been withdrawing from the klonopin but I was in a severe realpse and my brain just was not functioning. In the end I went back to the normal dose and eventually went up to 1.25mg which greatly helped noise sensitivity.

    I was losing a lot of weight qucikly and my dr added very low dose mirtazapine. That got me through the worst of the relapse but I have recently stopped it. Mirtazpaine is an antihistamine and I have since added a non sedating one to see what that will do to my sleep.

    At this stage I think the klonopin is helping me but of course i would love not to have to take it. Dr Cheney believes it should be increased in relapses and I think I have not done that in the past when perhaps I should have.

    My sleep definitely needs work. I do not get SWS and I know this can be aside effect of klonopin. But I also get a lot of arousals which are also a likely cause of the SWS problem and that is either related to UARS or to adrenaline surges.

    So in short - would love not to take it......resisted drugs for the first 17 years but in the end I think I am alive due to going back on Klonopin (long story right there).

    If I had to start over with my current knowledge I may have taken a different path but who knows.

    Cheers Sand
  7. Nielk

    Nielk

    Messages:
    5,244
    Likes:
    5,150
    Queens, NY
    Hi Esperanza,

    Carbamazepine is Tegretal which is a sister drug to Trileptal. From what I understand, when takingTegretal, one needs to check blood levels whereas with Trileptal it's not needed. I would first try Trileptal and see if it agrees with you and if it helps you with anxiety. It does help me but, we are all so different. As with anything new I would try it on the lowest dose possible.
    Good luck,

    Nielk
  8. INKY

    INKY Inky

    Messages:
    13
    Likes:
    0
    Brighton
    I can believe people in the States might be sicker, rates of Type2 Diabetes there have preceded those in Europe, they had children sufferers when it was at teenage level here, also similar pattern with obesity. I also suspect food in the States to be heavier treated with Pesticides than in Europe, although with so much of our veg coming from Southern Spain no doubt we shall fast catch up. Also with ADHD there seemed to be more cases in the States , but again Europe seems to be chasing. But trying to judge a person by volume of illness in their country,, apart from being illogical, i would think can only lead to insult.
  9. Calathea

    Calathea Darkness therapy

    Messages:
    1,086
    Likes:
    537
    Scotland
    Klonopin is a benzodiazepine, and that is a highly addictive group which is often a total nightmare to come off, and indeed in those cases has first been a total nightmare to stay on (with ever-increasing doses needed due to tolerance). I would be very careful with using that, and avoid any doctor who plays down the risks. Personally I reserve benzodiazepines for short-term use only. Other addictive groups to be handled with caution include opioids and anti-epileptics. It's not well known that gabapentin can be horrendous to come off - I recently spent about six months recovering from gabapentin withdrawal, with most of the experience being after I'd completely stopped it (the doctor had tapered me off too fast, which didn't help). I was far worse off than I'd have been if I'd never tried it, and I still haven't bounced back to where I was before.

    As for how severe ME is in various countries, or the relative prevalence, it would be insane to pretend that we can make even an educated guess. No one has a clue. It's a condition where there isn't even a reliable and commonly-used test for diagnosis, or even universal consensus on the diagnostic criteria, for heaven's sake. Misdiagnosis and lack of diagnosis quite possibly occur more often than accurate diagnosis. There's no cure. There's no universally effective treatment. Patients tend to end up off the radar in terms of medical and social care. It's not like, say, heart attacks, where there is a good record of who gets them because we know how to diagnose them, and because they end up requiring hospital admission or causing death (and even so, it's entirely possible that mild heart attacks are under-reported). We are simply not going to start getting even halfway reliable stats on this until there are a) universally agreed diagnosis criteria; b) a universally agreed and thoroughly accurate test which can be applied easily (as opposed to something so expensive that it's almost never used); c) ME patients are actually being treated properly within mainstream medicine. That's a long way off at the moment.

    In terms of speculating about where ME might be worse, it would not be unreasonable to guess that there may be a correlation with the general state of health in a country. I would expect that poor diet or lack of access to healthcare would be exacerbating factors, yes, but such things can be surprising, and it's always very complicated as there are so many factors. I've noticed that patients with ME in America seem to be on far more meds than patients with ME in the UK, but I haven't yet been able to determine whether either approach causes an improvement. It's not as if there are swarms of people recovering in either country.

    Meds - yes, of course they are risky and have side effects, no one is disputing that. Since medication intolerance is a common aspect of ME, and since most if not all people with ME find that most medication is unusable for them (due to side effects and/or lack of effectiveness), I think that most people with ME are on very little, if any medication, for the first few years, and sometimes long-term. I was mostly on no medication whatsoever for the first decade, with only very occasional use of meds every few years. It took a good doctor and an awful lot of experimenting to find anything that helped symptoms at all, and it's only a few symptoms. In one way this is good: it means that I'm less likely to be on a dangerously complicated cocktail of meds, and it makes it easier to monitor the meds for side-effects.

    Psych meds for physical purposes - this is well known and has been for decades, as drugs have a multitude of uses. Two examples are valium (diazepam) as a muscle relaxant, and amitriptyline for pain or sleep (note that it's used for these purposes in a much lower dosage than it would be as an antidepressant). Similarly, some meds used for physical purposes can have notable effects on the mind.
    taniaaust1 likes this.
  10. Bunchy

    Bunchy

    Messages:
    94
    Likes:
    16
    UK
    Hi Nielk,

    I'm doing pretty well with Freddd's taper for now. Almost half way off the damn benzo now :thumbsup:

    I will ask my doctor about Trileptal if things get tricky.

    Hope you are still feeling better :hug:

    Love Esperanza x
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,944
    Likes:
    4,920
    Sth Australia
    I just want to warn anyone who has IBS-C with the ME to avoid trialing amitripyline.

    Amitriptyline has wide spread effects and one part of the body it affects is the bowel is it slows down peristalisis so doctors shouldnt be giving it to those who have IBS-C as it can make that much worst (maybe that would be useful thou to those who have IBS of the other kind?).

    I was only trialing a dose of between 20-50 per day (the dose which is used for sleep).. and that is all it took to cause lasting bad effects on my already IBS-C bowel which havent gone away after stopping the med, months ago. Due to that and the damage its left me with, I now need to see a gastoentrologist. (before this med I had my IBS-C under control with things)

    Doctors really should be looking more into how individual meds affect the body before prescribing, to make sure one is being given a suitable med ..as we all have different symptoms which can be affected if a med is well known for physiological affects on other body areas. The idea of one med will suit all for ME/CFS for a certain symptom is so wrong (that is where my doctor went wrong.. with not considering i also have IBS-C while trying to treat the insomina issue).
  12. xks201

    xks201 Senior Member

    Messages:
    612
    Likes:
    184
    6 Months Recovering from Gabapentin Withdrawal? How much were you taking? lol MY doc gave me like 300mg a night for sleep and I have no withdrawal symptoms. I don't see why people need like 3 grams of the crap when 300mg knocks me out. Usually everyone starts out on a low dose anyway.

    As far as Klonopin and benzo withdrawal I think it is pretty overrated if you use low doses. Like .5mg a day or something. I haven't had issues.
  13. Nielk

    Nielk

    Messages:
    5,244
    Likes:
    5,150
    Queens, NY
    xks201,

    50%of patients taking Klonopin for 6 months or longer develop a dependency to the drug.

    You are obviously in the 50% who have no problem but, please don't misinform people by telling them Benzodiazepines are safe drugs.

    I almost died taking Klonopin long term and I'm not an isolated case.

    Everyone reacts differently. You did well on 300mg Gabapentin. This does not mean that the next person will too.
    I took Gabapentin for a while. They had to keep increasing the dosage and it did nothing for me.

    If it's one thing we learn on this forum it is that we are so different when it comes to how we react to different treatments.

    I think it is a major disservice to the ME/CFS community to declare that benzo withdrawal is overrated!
    Would you say hat dying from benzo withdrawal is overrated? It happens all the time.
  14. sianrecovery

    sianrecovery Senior Member

    Messages:
    706
    Likes:
    407
    Manchester UK
    I've done benzo withdrawal and helped others manage it professionally. Abrupt withdrawal from high doses can cause life threatening fits, its a long withdrawal, and really needs to be carefully done in tandem with a health professional. There is some evidence, the name of the paper now escapes me, that high dose usage of benzos over a period of time can lead to permanent cognitive deficits.
    For anyone reading this who is struggling, please be hopeful - the symptoms do eventually fade - but it takes time - be patient and be gentle with yourself.
    Nielk and warriorseekspeace like this.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    Everyone reacts differently to meds, gabapentine i have used 1200mg for pain issues and i dont get sleepy at all from it but lyrica supposedly a similar med seems to cause some sedation for me. as for withdrawals i have never had an issue with stopping cold turkey.
    I think people have to try to stick to the minimum dose of benzo's for sleep and if it stops working then try something else, can always go back to the original med later and it may help again as tolerence is lowered. I think people get into problems when a med stops working and then the dosage keeps getting pushed higher and higher, this is when severe tolerence and withdrawal problems occur for most.
  16. sandgroper

    sandgroper

    Messages:
    71
    Likes:
    35
    west australia
    interestingly I recently tried to increase dose of Klonopin and found that I could not tolerate it. It seems I have a narrow band and need to stay within that...too little and it doesn't give me enough coverage and too much causes sedation. My main issue with it is that I have had to go to drs to get a script and that is not always easy for me. Its the only drug that i have taken consistently everyday and i know I am dependent and can live with that. No way would i take it if i had the option of sleeping without it but have to say the benefits of improve tolerance of noise makes me think its doing more than just helping with sleep. I have also read that its a mast cell stabiliser so perhaps i benefit from that as well. I am adding an antihistamine to see if that helps.
  17. Nielk

    Nielk

    Messages:
    5,244
    Likes:
    5,150
    Queens, NY
    sandgroper,

    For what purpose would you want to add an antihistamine to the mix? It would only add to the sedating effect.
  18. sandgroper

    sandgroper

    Messages:
    71
    Likes:
    35
    west australia
    I have problems with breathing due to allergies and use a non sedating type of antihistamine. I suspected i was getting interupted sleep due to nasal congestion. I have tried sedating antihistamines as well. I was on mirtazapine which doctor recommended at low dose for sleep. It has anti histamine properites but i did not like the increased hunger - it did definitely help with sleep. other reasons for the antihistamine is experimenting with managing what may be a mast cell disorder.
  19. mtnbibliophile

    mtnbibliophile

    Messages:
    33
    Likes:
    20
    With so many strong opinions on prescription medications on this thread, it seemed like a good place to raise the question: who should be PRIMARILY responsible for checking for drug interactions - the doctor (and if so, which, the general practice doctor or a specialist), the pharmacist, or the patient? Often it seems that we CFS patients are the ones, but we're the ones with brain fog and without specialized training. Who should be doing this for us?
    taniaaust1 likes this.
  20. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    I recently had a bout of sciatica and had to get strong painkillers from the gp. Each tab had 500 mg paracetamol and 30 mg Codeine. The codeine did the trick for the pain, and I only needed one tablet at a time. (The paracetamol did nothing but make my liver overwork to get rid of it. Paracetamol does nothing whatsoever for pain.)

    I sometimes use an antihistamine for sleep - diphenhydramine, so I specifically asked my gp if there was any interaction between the two. (We were talking on the 'phone at the time.) He eventually said; "No, no problems at all."
    He also told me he took so long to answer, because he was looking it up.

    I was having some trouble sleeping in the first place and kept waking up when the painkillers wore off.

    However, I decided to look it up myself too, and just as well I did, because there, (on wiki of all places!) it stated clearly that diphenhydramine prevents the conversion of codeine to morphine, so it would render the painkiller ineffective.

    I've had another gp tell me it is perfectly safe to drink alcohol while on griseofulvin. (a systemic antifungal drug I was prescribed... for eczema :rolleyes: ). Alcohol is specifically contra-indicated when taking griseofulvin.

    Do not trust a gp to know about drug interactions!
    Do not trust what they tell you unless you've had it confirmed elsewhere that you know to be reliable!

See more popular forum discussions.

Share This Page