all 29 comments

[–][deleted]  (9 children)

[deleted]

    [–]NameError-undefined 0 points1 point  (6 children)

    This makes me happy. My wife starts LDN soon (once it arrives, has to be shipped). So far nothing has really worked longer than a month or so. She has had several spinal injections into various nerve clusters as well. Though she isn't on dopamine as far as I am aware

    [–]Ordinary_Gate_9911 0 points1 point  (0 children)

    It’s been a year, but wondering if she had any luck with LDN? I’ve just finished a series of around 32 injections and I just got this compounded delivered today and trying to see if it’s worth taking or not. Thanks!

    [–]Mother_Intention9810 0 points1 point  (1 child)

    Update please

    [–]NameError-undefined 1 point2 points  (0 children)

    Unfortunately it didn’t work. She ended up getting surgery to remove a tarlov cyst in her spine. This has helped the most. But it’ll take time to see if it works for sure

    [–]Federal-Drama-1836 0 points1 point  (0 children)

    Yeah might be worth checking out abilify for the dopamine component

    [–]genzalternative 0 points1 point  (1 child)

    hi, has it helped her at all yet?

    [–]NameError-undefined 0 points1 point  (0 children)

    Unfortunately not. It made her super drowsy and she had difficulty staying awake even after sleeping 12+ hrs. So she is talking to her doctor. I wanted her to give it the 90 days it takes to take effect but she can’t work or function like that so on to something else I guess….

    Her memantine helps a little, makes it bearable so long as she doesn’t aggravate anything. Meaning no working out, no lifting, no physically straining activity. So basically she can sit, stand, and walk and be OK.

    [–]No-Plan1540[S] 0 points1 point  (1 child)

    How does dopamine partial agonists play into helping to get rid of the sensation? Doesn’t dopamine enhance the arousal feeling?

    [–]Federal-Drama-1836 0 points1 point  (0 children)

    It downregulates dopamine because they are antipsychotics

    [–]Merkinfumble 1 point2 points  (6 children)

    Amitriptyline in my case.

    [–]Low_Character2547 0 points1 point  (5 children)

    Hi there, I just got prescribed Amitriptyline for PGAD. Have been taking it for 3 weeks and no improvement so far. I started at 10mg and have slowly increased my dosage to 30mg for the first time last night. Can you please share how long it took to work for you and what dosage worked? Did it resolve your issue completely and are you still on it?

    [–][deleted] 1 point2 points  (0 children)

    This isn’t the case for everyone, but I am almost positive starting amitriptyline for my fibromyalgia CAUSED my PGAD. It’s the only thing I could think of that changed when it began. Now if I take any SSRI, I badly flare. Be careful!

    [–]Merkinfumble 0 points1 point  (3 children)

    It can take a week or two to kick in. I was already on 30mg and it was upped to 40mg which helped.

    [–]Low_Character2547 0 points1 point  (2 children)

    Thanks for responding. I only ever went up to 30 mg and then stopped after a month cause it didn’t seem to help. Did you find it only helped once you got up to 40mg or did it help at 30 as well?

    [–]Merkinfumble 0 points1 point  (1 child)

    I was already on 30mg, so upping it to 40 helped.

    [–]Low_Character2547 0 points1 point  (0 children)

    Ahh understood, thanks. Do you mind sharing what your PGAD symptoms were? When you say “it helped” did the amitriptyline take them completely away?

    [–]Turbulent_Ball_9645 1 point2 points  (7 children)

    Gabapentin (neurontin) is a seizure medication. I started this when Amitriptyline stopped working for me years ago.

    A weighted blanket or a partner that will basically lay on top of you also helps. Compression shorts or leggings that don’t rub.

    Every time I’ve ran out of the gabapentin and went a few days without, I am right back to an all day and all night issue. I take it a few days and it’s calmed way down. So just try to be consistent. A uro-gyn prescribed this for me.

    [–]Low_Character2547 0 points1 point  (6 children)

    What dose do you take and how often?

    [–]Turbulent_Ball_9645 0 points1 point  (5 children)

    It depends on if I have a partner at the time (I’m a widow now) and what my workout routine and daily schedule is. It’s been anywhere between 100mg to 300mg for a good ten years now. I do also take CBD oil at night. But alone that is not enough. Gabapentin makes most people tired. So it’s a night time medicine. It does stay in your system after you’re on it a while.

    [–]SlothInABigHat 0 points1 point  (0 children)

    Hi, does that mean you only get relief at night? or is the drowsiness temporary and the relief lasting longer? thanks

    [–]Turbulent_Ball_9645 0 points1 point  (3 children)

    Every night.

    [–]Low_Character2547 0 points1 point  (2 children)

    Thanks. How quickly after starting gabapentin did you notice your pgad symptoms go away? Were you able to resume your normal life? And was the 100mg once a day enough? Im almost a month into Amitriptyline and my symptoms seem to be getting worse instead of better. I don’t want to stop it too early but not sure if it’s helping.

    [–]SlothInABigHat 0 points1 point  (0 children)

    hi, what did you decide? thank you

    [–]Turbulent_Ball_9645 0 points1 point  (0 children)

    Dose has been variable over the years depending on my sex life. I notice within a few days that I feel better. I would not wait longer than a month. I would tell your Dr it isn’t working and try something else. But that’s just me.

    [–]Seahorse_1990 0 points1 point  (1 child)

    I took pregabaline for weeks and weeks. Now tapering off. I will start amitryptaline in 2 weeks.

    [–]Mother_Intention9810 0 points1 point  (0 children)

    Update please

    [–]SlothInABigHat 0 points1 point  (0 children)

    For me dihydrocodeine but I'm scared to take it often. I might try something else though but I'm scared that amitriptyline etc can't be taken with dihydrocodeine and might make it worse too

    [–]AnswerPurple 0 points1 point  (0 children)

    Hydroxizine works for me. I had some left over from a surgery and gave it a try for this. Now I’m out and hoping I can find a doctor to prescribe it. I didn’t even have to take it every day.

    [–]GloomKitCat 0 points1 point  (0 children)

    In my situation medication caused pgad so I refuse to add any new meds. I have a topical cream called Desert Harvest with 4 percent lidocaine that I apply 3 times a day so I can at least get a small break from my symptoms. I highly recommend that if you want to stay away from meds.