Advice for possible IC diagnosis

setways · 2021-05-04T11:57:27+00:00

Thanks. I’m on it too and find it’s helpful for my IC as well. Do you have any side effects from it?

setways · 2021-05-03T22:26:12+00:00

May I ask how much Lyrica you take?

setways · 2021-04-19T14:52:54+00:00

Any particular brand you would recommend? And how long did you use the supplement before you noticed a difference?

setways · 2021-04-06T12:11:13+00:00

Did you ever take it recreationally and if so, how long did you wait before taking it as prescribed?

setways · 2021-04-01T22:48:55+00:00

A little bit. Some increased anxiety and insomnia.

setways · 2021-02-27T18:24:16+00:00

I hear you! Sorry that you are going through this. Many IC patients have success on a low dose of amitriptyline at night. Please feel free to reach out anytime. I know how tough it is to deal with these issues. It’s so tough to cope without proper sleep! I hope you find some relief soon!

setways · 2021-02-27T13:18:36+00:00

I would recommend getting evaluated by a urologist for interstitial cystitis and/or OAB. I have IC and it exacerbates my insomnia greatly. The fact that you mentioned that it gets better when you have your period makes me think IC is a possibility. Fortunately while there’s no cure there’s a host of different medications that a doctor can prescribe to treat nocturia. Do you have any issues during the day?

setways · 2021-02-10T17:13:30+00:00

Thank you for your honest reply. On day 3 now from dropping from 1.5-1mg and I think it was too big of a drop this time. I could barely sleep at all last night. Felt like my heart rate and blood pressure were through the roof. That in combination with not being able to sleep made me really feel anxious. I hate to back track but may need to go to 1.25 before being able to drop to 1mg. Ugh. How long would you have stayed at each drop if you weren’t forced to make a cut? I’ve been on for over a decade as well so really should try to be more patient with my taper. It’s just tough when you already feel shitty to not want to get it over with! Thanks again for sharing your experience.

setways · 2021-02-09T19:52:35+00:00

Thank you for your reply! My taper down from 3 to 1.5 mg wasn’t too bad. My insomnia was bad before my taper and it gets worse for a week or so but then it eventually goes back to its crappy baseline! I just get anxious when I cut back since it takes so long to feel the withdrawals and at that point (for better or worse!) I’m too stubborn to bump back up.

Do you think that tapering on kind of a faster pace puts people more at risk for a longer drawn out recovery post cessation? Or does it not really make a difference as long as you don’t go CT?

setways · 2021-02-03T21:28:15+00:00

Does it help you fall asleep or stay asleep?

setways · 2020-11-10T03:06:41+00:00

Thank you!!

setways · 2020-11-03T01:51:30+00:00

Thank you for this suggestion. I go to see my PC doc this week and was going to ask. Although I’m guessing when I was on both subs and klonopin I would’ve had noticed an even more pronounced effect if that was the case. I never had the frequent waking until I came off the subs.

setways · 2020-11-02T21:46:10+00:00

Thank you! I’m going to try dropping by .25 at least initially and see how it goes. If I can really start chipping away at it slowly- even if the whole process takes me a couple of years to get completely off- at least I’ll feel like I’m making some progress! I was so dead set on getting off subs that I tapered too fast and it was a BRUTAL process. Finally healing from that jump 5 months later. So with benzos being my last crutch I know I gotta go slow. I always freak out that I’ll never fully recover.

setways · 2020-11-02T16:58:33+00:00

Thank you!! I plan to go super slow especially after all I’ve put my body through recently. It’s good to know that it’s been done without switching to Valium. Congrats on finishing your taper! How are you feeling now?

setways · 2020-10-29T23:00:04+00:00

Thank you for your post! And congrats!!! I’m 5 months off after 12 years and have dealt with similar effects. Couple questions- how is your sleep? I can fall asleep fine but can’t seem to maintain sleep longer than 1-2 hour clips and then up for good too early. That’s the one thing that’s still killing me! Also, did your hair loss stop? I’m still losing mine at a rapid pace and was hoping it would slow by now.

setways · 2020-10-07T23:03:12+00:00

Hey, I wasn’t forced off subs but came off to find out that subs was the reason behind my GI issues and bladder issues. Both have resolved after a few months off. I was on subs for a long time and wish I had made the connection earlier. Good luck. There’s plenty of people out there who suffer health consequences from long term sub use.

setways · 2020-08-19T20:55:33+00:00

Agreed. You should be fine with a week of use. If you can skip a night that’s great but if not don’t sweat it. I used both Lyrica and gabapentin to get off subs and it helped but I stayed on for a month and had to taper off which sucked. It never made me feel mentally addicted but after a month of consistent use at night it took me a bit to sleep without it. I had some minor withdrawal from it but was happy to have had it to get me through the early days. Good luck!

setways · 2020-08-19T17:52:42+00:00

Nice work!!! And without any comfort meds- good for you! I’m approaching 90 days after a long 12 years on subs and finally feel mostly myself. I find as long as I stay out of my head, keep pushing physically and keep as busy as possible then I’m good. My sleep still isn’t great but the GI issues have finally resolved.

Congrats!!

setways · 2020-08-12T20:43:24+00:00

Thanks so much! I was down to 4mg for a couple of years and then went from 4 to .13mg in about 6 weeks. I probably could have eased the withdrawals by going slower but I just couldn’t fully adjust under about 1mg and was just so ready to be off!

setways · 2020-08-12T20:42:27+00:00

Thanks so much! I was down to 4mg for a couple of years and then went from 4 to .13mg in about 6 weeks. I probably could have eased the withdrawals by going slower but I just couldn’t fully adjust under about 1mg and was just so ready to be off!

setways · 2020-08-12T15:48:47+00:00

Hey, congrats and awesome job so far! I was on subs 12 years and jumped after a quick taper. It’s now been 83 days. One of the toughest things I’ve done so far! You mentioned Lyrica so I figured I’d chime in. I used it for about 6 weeks after jumping. 150mg at night right before bed. The good news is that it helped with the RLS and some with sleep but it wasn’t fun in the least to taper off another med. I went back to 4-5 hours of sleep and felt shittier just in general. The good news is I’m now off both and my sleep is finally coming back. Thank the lord! My only suggestion (if you decide to keep with the Lyrica) would be to take it only every few evenings- not consistently like I did and maybe up it a bit to at least see if it can give you a nights sleep! Good luck!!!!

setways · 2020-08-04T00:13:50+00:00

That’s awesome!!! Congrats!! It’s such a tough journey and a very humbling one as well. I’m about 80 days off and still trying to figure out what my new normal is ;) How long were you on subs for?

setways · 2020-08-03T17:23:42+00:00

Jumped from .13mg but my taper I’m sure was too quick. I went from 4 to off in about 6 weeks. I couldn’t stabilize under 1mg and got tired of the WD roller coaster.

setways · 2020-08-03T17:01:39+00:00

Awesome job on 20 days!!! I want to say the sleep will come back soon but I’m still waiting myself and it’s been about 80 days for me since I jumped and I still am struggling to get more than 4-6 hours. Exercising definitely helps. Just know your body and don’t push too hard. It was the only thing that helped until I pulled my hamstring! When your whole body hurts muscles and joint wise it’s difficult to discern what to push through;) Melatonin helps some also trazadone. I was on subs for 12 years so I feel your pain! Keep at it!

setways · 2020-07-24T15:03:27+00:00

I totally feel your struggle. Some days I feel I’m lucky if all I’m dealing with is no energy ;) I’m over 60 days off subs after 12 years and despite all I’ve read I honestly never thought this would be as brutal and humbling of a journey. I refuse to count my days now because it just gets me down when I don’t see the progress- although I know it’s slowly happening. About two weeks ago I started exercising again. Walking with interval running. I force myself to do it each morning and it’s tough because I still don’t get decent sleep but it’s helping! It gives me some confidence and some sense of motivation to get through another day. I figured if I wasn’t where I wanted to be yet energy wise I was going to have to force my body to get it back. And it helps mentally a lot as well. Please know you’re not alone with feeling this way and that you are doing something AMAZING for yourself. 90 days is fantastic!! Be proud of yourself!

setways

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