I have had frequency all my life (a hereditary thing methinks) and I was referred to the bladder clinic a couple of years ago and saw the specialist there until it was closed. She mentioned that my symptoms seemed to be consistent with Interstitial Cystitis which seems probable.
Anyway, some nights I get terrible frequency, I'm talking six or seven times on the run, do a trickle, think I've emptied but then a slight turn in bed and up I go again, and this performance can be repeated as I say about half a dozen times and thereby affecting sleep. So I had a visit to the doctor booked last week and mentioned it along with all my other stuff, lol, and she's prescribed me some tablets called Tolterodine Tartrate. She said that the main side effect is a dry mouth and best not to read the list of side-effects but it's too late! I have. And now I am very reluctant to take them. I would rather have the frequency than risk the side-effects. Some of the ratios aren't that high either eg 1 in 100 may experience this or that (unlike others where it is eg 1 in 10,000).
Just wondered if anyone else has any experience of this medication?
Thanks
x
Written by
Kirby
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I've been on these for about a year and found them to be fairly successful. I still have to get up during the night but usually only once. I do suffer with dry mouth, very badly, but I have a few meds with dry mouth as a side effect. I use Biotene saliva replacement gel help me cope with it. Hope that helps, soft hugs xx
I too have been taking these for about 2 years now, on average only get up max of twice a night but before was 6/7 so i feel that improvement outways the dry mouth. thanks for mentioning the gel will look into that one. x
Glad you posted this. Needing the loo every hour all night really messes up my sleep! Gps have always said theres nothing they can do!
I would take the meds if I were you! Lack of our interrupted sleep really makes me sorer
No, but I have Interstitial Cystitis and so has my sons. First of all, the MOST important thing - change your diet. It can take a few weeks before you notice the difference. Your bladder lining is damaged and you have to make your pee less acid. Look at the website I-C Network (its American) look around the website and you will find the diet - there is a general advisory and a more specific list of foods to avoid - which are mainly acid foods, most fruit except for pears, blueberries and Fiji and Pink Lady apples, no tomatoes, only black olives, no cheese except for white, no yoghurt, no spicy food, no alcohol, no tea, no coffee, no carbonated drinks, no sweeteners, no chocolate. There are also plus foods that help - ie, peppermint, camomile, honey, white bread, - the list is better than I can explain. I also try to reduce proteins, and I took rice milk instead of milk. It really, really, really, really, really, really works, I can't emphasise it enough. Secondly, if you can afford it you can order Cystoprotek from USA - google it. It is a collection of food supplements in a tablet form and it helped me a great deal, it helps repair the bladder wall so again it takes a few weeks usually to work, though I noticed it worked really quickly. There is only one drug registered for Interstitial Cystitis and that is Elmiron, so maybe that's a different name. It is horrible with horrid side effects and only helps 35% of people. Then Acupuncture from Toni Tucker in Maidenhead - expensive but she has statistics and 81% of people improve.
THE MOST IMPORTANT DRUG THAT HELPS ME IS DIAZEPAM THOUGH DOCTORS ARE RELUCTANT TO PRESCRIBE IT. IT RELAXES THE BLADDER AND HELPS YOU GET THROUGH THE NIGHT. ANOTHER DRUGS THAT THEY MIGHT BE MORE WILLING TO PRESCRIBE IS CLONAZEPAM, IN THE SAME GROUP. TRY TO GET IT BECAUSE IT REALLY WORKS AND IN OTHER COUNTRIES IT IS ONE OF THE FIRST LINE DRUGS.
Another thing to try is anti-histamines. I found that Atarax was good. It is cheap and your GP will prescribe it. It also helps you to get a good nights sleep.
This is a horrible, horrible disease BUT YOU CAN DEFINITELY BEAT IT.
Thanks for your feedback, Judith. The drug also goes by the name of Detrusitol, I now see. It's good to know that my instinct to take Diazepam on the bad night worked too. I'm sure diet does help and I know fizzy drinks are a trigger and tea but apart from a bowl of oats and milk before going to bed there is nothing to trigger it except water and believe me a sip of water is enough to trigger it. Tea, though, also has come very good ingredients in it and I loathe Chamomile tea although yes, i have taken it for Irritable Bladder before and it does help calm the bladder. Cranberry juice is supposed to help but lately I've not found that that's working. Also pre-hormonal is a definite trigger but that wasn't the reason last week. As I say, there's also a hereditary factor going on (weak bladder rather than damaged although I'm sure mine's suffering now from gradual wear & tear!). Thanks also for the info on Clonazepam. Do they prescribe it in this country? I am making a note of all your helpful suggestions.
Cranberry is really bad for Interstitial Cystitis and it is one of the substances that trigger a flare, really, I do suggest that you keep to the IC diet very strictly for 3 months so that your bladder can heal - its like pouring acid on an open wound if your urine is acidic - after your bladder wall heals (which takes 3 months) you can vary the diet a bit and see what you can tolerate - have a look at the website of the I-C Network - it is really brilliant - it means 24/7 keeping to the IC diet not just at night but it makes the difference between me feeling very suicidal to feeling life is good. Clonazepam is prescribed in UK. I had stress incontinence from the age of 14 and a disposition towards urinary infections, but wasn't diagnosed with IC until I was 65. My son was diagnosed at 36, the diet worked for him really wel, he is in remission with no symptoms just now. Interestingly, over 70% of people with fibro have myofascial pain syndrome, and I have been researching, research in USA reveals IC can be a form of MPS and some people have been cured by trigger point injections in USA, I am trying to persuade Dr. Chris Jenner of the London Pain Clinic to try trigger point injections on me but it hasn't been done in UK yet. In US and in Dubai (including UK doctors in Dubai) Diazepam is the drug of choice for bladder spasm, but doctors in UK get a bit neurotic about it because the NHS has been sued by some people who have developed addiction, but I have a paradoxical effect to almost everything else I take, I am down to 2mg a day now so GP is ok about prescribing it. Anyway who cares if I get addicted, I have to live with this horrid disease, 12% of people try to commit suicide apparently and I can understand why.
That's really interesting what you said about Cranberry juice because it was after drinking that that my bladder was worse. It's been better since I stopped drinking it. It's generally assumed that Cranberry is good for cystitis. Btw, I've not been diagnosed with IC, only told by the bladder clinic that my symptoms were consistent with it but it involved other procedures to make a formal diagnosis and because of my pain thresholds during what other people find as routine procedures I didn't take it further.
My GP is fine about prescribing me Diazepam because I only take it as and when. Physical addiction only occurs when people have built up a tolerance to a drug.
Well, it is worthwhile starting the diet to see if it makes a difference, people with fibromyalgia are more likely to get it than other people. I know what it is like; your life is devastated with it. And the sooner you start the diet, the less damage to your bladder wall. I had a cystoscopy to diagnose mine, I saw it on the screen - lots of red swelling over the bladder. Looked painful and it was. But no IC doctor in UK ever seems to recommend the diet - too keen on using medicines, which really don't help. I am glad I was diagnosed in Dubai, they seem to recommend diet and Diazepam and anti-histamines and it made a big difference to me. Love and look after yourself x
ps - another thing that really helps with the feeling of urgency is my TENS machine. I put two paddles on my back, and two either on my lower abdomen or two around the sides of the vulval area - you have to find a comfy position to make the paddles stick to the skin because of the crease between your vulval area and the legs. I put it on for 20 minutes after I go to bed and before I sleep - really helpful because when I am going off to sleep I have no feelings of urgency and no vulval pain. If you take sleeping tablets, then take them at the time you put the paddles on, and by the time you finish it will be time to go off to sleep. And the other thing, I use a talking book at night - it doesn't disturb my hubby who is a very light sleeper, because I use earphones. Then every time you wake up, just listen to the story and you can usually forget that you want to pee and go off to sleep again - without talking books I have to get up about 3 times a night, with talking books I stay in bed all night. And I have read some really good stories, I really enjoy the books. With a medical condition you can sometimes get audiobooks free from the library.
Hi I had to see a urologist as constantly having bladder problems I had a cystoscopy and I have overactive bladder syndrome I take vesicare and they help thankfully , they do give me a dry mouth also . Hugs angie x
Thanks for that, Angie. I was too scared to go anf have the cystoscopy because of my intolerance to internal procedures! I may have overactive bladder or irritable bladder rather than IC if there is a difference.
I'll add a vote of confidence for VESICARE tablets for overactive/oversensitive bladder. (Don't have IC) Have been taking them for about 4 years now (1x5mcg daily). When I first started taking them, it was along with the use of Estradiol vaginal pessaries - Vagifem - theory being that the small topical dose up near the neck of the womb plumps up the vaginal lining, giving the pelvic floor muscles more mass to grip on when trying to hold on to bladder contents. The pessary tablet is delivered with a slim applicator, sticks to the vaginal walls and therefore stays put, unlike some creams which just leave a mess in your knickers a short time later! Added bonus (for me, in my 60s now) is it relieves vaginal dryness. Both products were prescribed by local Continence Advisor; doctor (male) had just given me leaflet on pelvic floor exercises. Good doctor generally, but I think for some things a female physician understands the equipment and practical anatomy better.
I suffered all the problems you had - I was going to the toilet up to 6 times an hour when I was awake and every couple of hours when I was asleep.. I initially thought I had cystitis so I went to the chemist and was given Cymallon and told to go to my GP if the Cymallon didn't work. It didn't so I went to the GP and I was given antibiotics, they didn't work so I was given Tolterodine. I have never looked back. They are an absolute God send and they, together with my MST, tablets are my 'must haves' everyday [ What I mean by this is that should I be so ill that I am sleeping all day I ensure that my carer gives me my 'must have' medication]. I consider a dry mouth a very small price to pay for a good night's sleep and not wanting to go to the toilet 6 times an hour.
I would take the medication as side effects do not happen to everyone. I believe that we should try what is offered as we cannot know whether that medication will work for us or if we will suffer any side effects until we have tried them.. If merely reading the POSSIBLE side-effects medication could have upon us stopped each and everyone of us from taking our prescribed medication then none of us would be taking anything and the GPs and pharmaceutical companies would be out of business.
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