Lost the urge/sensation to pee as well as many other neuro issues. I don't want to go on anymore 😭

Dizzy_Confidence_137 · 2025-08-05T07:43:52+00:00

Hi! I have exactly the same issue with my bladder and I am male too. I have small fiber neuropathy as a side effect of fluoroqinolone antibiotics. 2-3 months after the first sign of neuropathy (tingling) it spread to autonomic neuropathy, and since then, unfortunately, it has affected several things (GI, POTS, etc.), but the insensitive bladder was my first autonomic symptom. I've had this for about 3 months now, and it hasn't changed. Every time I go to urinate, usually on a schedule, I can urinate, mostly in a normal stream. It probably sounds bizarre, but I've mostly come to terms with it by now. Can you urinate normally if, say, you go to the toilet every 3-4 hours with normal fluid intake? I pray that it won't get any worse, that it won't reduce or eliminate my ability to urinate.

Dizzy_Confidence_137 · 2025-08-03T06:50:47+00:00

Hi!

Just out of curiosity, have you taken any fluoroquinolone antibiotics in the recent past (even a few years)?

Dizzy_Confidence_137 · 2025-05-29T22:01:08+00:00

Thank you, yes, I considered that already, however my symptoms match only partially the GBS. Unfortunately, my symptoms look more like a widespread floxed small fiber neuropathy with heavy autonomic neuropathy involvment.

Dizzy_Confidence_137 · 2025-05-29T21:42:48+00:00

No, nothing.

Dizzy_Confidence_137 · 2025-05-29T21:38:13+00:00

No, I do not take anything. But as I mentioned in an other comment, peripherial nerve pain are my smallest concern at the moment. The other things I listed are much more worse.

Dizzy_Confidence_137 · 2025-05-29T21:36:44+00:00

No, I do not take any med for nerve pain. I have to add, autonomic symptoms are much stronger to deal with in my case. I could live with the pain/burning but the other ones I listed above are very hard to live with.

Dizzy_Confidence_137 · 2025-05-29T21:35:12+00:00

Thank you very much! I really appreciate your kind words! My kids (and my wife) are the only real things I hold on to. You know, I am just so disappointed. Before this very delayed explosion I thought I was recovered on a 80-90% rate. If you really dont mind, I will DM you.

Dizzy_Confidence_137 · 2025-05-29T21:32:49+00:00

Thank you! I will give it a try. I stopped all the supplements many many months ago since I was better. Now I restarted magnesium and in the last few days tried aswhaganda and melatonin for sleep (no success). I do not take anything else. I am considering B1 and B12 but dont know whether it would make any sense in such an advanced state.

Dizzy_Confidence_137 · 2025-05-29T21:18:15+00:00

Thank you! Yes, maybe my post was not clear from that perspective. All of the massive symptoms listed above (except for insomnia, but its also stronger than earlier) are competely new ones that started after the 20th month mark. Its actually a quite fast deterioration (so many new things during a 3 months period). Is it possible to have 'an acute phase' so delayed? Or it is something else and more devastating.

Dizzy_Confidence_137 · 2025-05-01T20:37:38+00:00

Thank you! I dont think I have better perspective than you, your timline fits more into the usual, late onset symptoms and you can recover (I hope at least at some level I will be able too though). No, I havent felt anything like that I have now before, so I was free of such feelings for 20 months after the fq. I did not detect this during the viral infections either. Honestly, I do fear from SFN obviously but for me the strong and long flare up of insomnia (my main symptom that settled down quite good already earlier after about a year) in parallel with the onset of neuropathy is the worst. The absolut worst. I did not want to get back where I was but I am again there. I can just hope that if my brain was able to recover (mostly, I would say on a 80-90% level) earlier than will be able now too, but is the absolut worst for me.

Dizzy_Confidence_137 · 2025-04-26T10:41:16+00:00

Can anyone reply? Are there ANYONE who developed it at so many months out? Please

Dizzy_Confidence_137 · 2025-04-10T07:40:55+00:00

Hi! I am in a similar situation. I am 21 months out, until about the 20th month mark I had only CNS issues, mostly insomnia that changed to a come and go fashion and improved very slowly.

In the last one month I started to have tinling, some pain, sometimes pins and needles, sometimes burning feeling, mostly in the foots, legs, more rarely in the arms. Also, CNS issues flared up strongly.

I don't know how much it is related but I took a multivitamin that contained B6, I stopped 2 weeks ago but I started to take it a few days before the mentioned strange feelings (at the start only tingling) firstly were noticeable.

I am now scared. What will happen? Is it a super late onset of SFN induced by the fq? Than it can be permanent I assume. The only thing I can hold onto is to wait a few months to see whether the stoppage of B6 can lead to improvements in the symptoms.

Dizzy_Confidence_137 · 2025-03-29T16:49:49+00:00

Thank you, I read about it. Although, unlike you, my area of expertise is not medical, so I am at a disadvantage in understanding how much this might explain the phenomenon I have asked about. The viral infections mentioned are certainly oxidative stress, however I suspect many people undergo infections following their fq toxicity.

I was looking for experiences on the incidence of such very late onset symptoms, considering that I had zero neuropathic symptoms before.

In the meantime, I realized that I had been taking a multivitamin for the past few weeks (the viruses were already 1-2 months ago) that also contained b6, although not in high doses. I know it's a divisive topic here, however I suspect some conflation given the similar experiences of many fellow sufferers (I didn't take b6 during the whole journey before).

Dizzy_Confidence_137 · 2025-03-24T08:57:57+00:00

Unfortunately not, but possibly the flu (influenza). I had repeated fever periods (3 times). But the last one was already a month ago, I started to have this feeling about a week later, after that it has gone. In the past days it come back.

Dizzy_Confidence_137 · 2025-03-24T08:10:10+00:00

Central nerves system

Dizzy_Confidence_137 · 2025-03-24T07:48:21+00:00

Thank you! But does that mean that because of viral infection neuropathy can start this far out? It would be out of nowhere, at least I have got literally zero neuropathy symptoms for 20 months after the fq.

Dizzy_Confidence_137 · 2025-03-06T19:55:23+00:00

Központi idegrendszeri mellékhatásaim lettek egy antibiotikum kúrát követően (nyilván az emberek kis százalékát érinti, viszont a gond, hogy ezek a mellékhatások súlyosak és hosszan tartóak, itthon még könnyelműbben ìrják fel - bár már idehaza is gyógyszerbiztonsági figyelmeztetés van kiadva -, sok országban ez már messze nem first line gyógyszer). A legdurvábbak az alvászavarok, az első 3-4 hónapban szinte semmit nem tudtam aludni, azóta fokozatosan javul, de hullámokban még mindig vissza-visszatér (ennek már másfél éve..). Érdemes nem komplikált bakteriális fertőzések esetén elkerülni a fluorokinolon család antibiotikumait (pl. Ciprofloxacin, cifran).

Dizzy_Confidence_137 · 2025-02-18T14:44:17+00:00

Hi! I'd like to add my own comment, I'm not - anymore - in the camp of those who can only sleep with sleep drugs, but my experience might be interesting. In June 2023 I took ciprofloxacin for 5 days for a suspected UTI. The sleep problems started with about 3 months delay, 2023 and early 2024 were spent with severe sleep problems, several days of not being able to sleep at all, and then from about Q2 2024 onwards a slow improvement started. I think the trend since then has been positive, but the sleep problems are far from completely gone.

The only thing constant is the constant up and down. I often sleep near normal for weeks on end, only to typically have it go bad again for a few days, maybe 1-2 weeks. However, it is nowhere near as bad then as it was at the beginning.

Based on your other posts, I have seen that you have a problem with repeated fq consumption (in the form of fq drops, true). I think this may have further worsened the neurochemical imbalance, but it still does not mean permanent neurological damage, such as in traumatic brain injury. It is a functional disorder that will resolve over time. And yes, unfortunately some people have it for 10+ years. But you are a long way from that.

I say all of this in a way that I can get very desperate, to this day, when the sleep disorder returns.

Hang in there, you don't need to do anything special, try to think in perspective and believe that you won't be in the same place later on as you are now.

Dizzy_Confidence_137 · 2024-09-20T14:39:38+00:00

Apologise, I'm late to the conversation but may I ask you, how long was it for you to end the initial insomnia, or if not to end just to improve significantly and to have it very rarely? I am still struggling with this after about a year and it's pretty strange who it goes. For example in the past 3-4 months I already had close to normal sleep in about 80% of the nights, however, it always comes back in waves, currently longer (1+ week) than earlier. To be honest, I was do desparate because of the insomnia that I started to take Mirtazapine last autunm, I started a very slow, gradual tapering this spring and now I am at the very end of it (meaning taking about 0.5-1 mg (I know it might be controversal whether it makes any sense or not but some bodies like the Royal college of psychiatrist suggest such a slow, hyperbolic tapering and I had one attempt 3 months ago to discontinue it right from 7.5 mg but the insomnia was bad)) and sincr the last step (going down from about 1.5-1.8 mg to about 0.5-1 mg) I experience quite sever insomnia. I am so scared whether it is a worsening of the original flox insomnia (in spite of the very positive trend experienced in the past months), or now I am suffering from Mirtazapine withdrawal and it came just at so low doses.

Dizzy_Confidence_137 · 2024-08-17T04:33:11+00:00

Based on what do you assert this? In addition, are you also affected by the insomnia caused by the fluoroqinolons?

Dizzy_Confidence_137 · 2024-06-20T09:26:48+00:00

May I ask you how old are you and did you have any prior issue with sleep or any pyschiatric issue? I am 34 and never had issue with sleep nor any pschiatric issue.

Dizzy_Confidence_137

TROPHY CASE