(Note: As always I am not offering medical advice of any sort, and not recommending any treatments. A brain fogged woman sitting on her couch in her flannelette pjs, taping away on a keyboard, whilst binging on hotcross buns and Easter eggs, is not a substitute for professional medical advice. All medical decisions, including treatment options, should be discussed with your primary treating physician.)
here, here, here, here, here and here) which left me communing with my porcelain lover for weeks on end. Or Midodrine (here and here) which left me thinking I was going to stroke out or have a heart attack from the excruciating pain. It's a story played out for Bobettes world wide.
Whilst there is a general group of medications used to treat symptoms it is still a case of trial and error. What can be a godsend for one person, can be evil incarnate for another. Add in that we tend to be a sensitive bunch when it comes to tolerating medications, with many only tolerating paediatric doses, and it's one big funfest.
Unless you are one of the blessed few who know the underlying cause of your case, and also hit the jackpot and find your cause is treatable, your only options are to try and manage symptoms as they crop up. I feel like shouting "Once more unto the breach, dear friends, once more*" some days, as a new body part fails and we try to plug the hole with a yet another new med and a good dose of hope and prayer. Overall, the only thing my personal cocktail has been able to treat with any sense of success, is my fainting. Other than that, I am better on meds than off, but only by a small margin.
Last visit with my cardio involved a lengthy discussion about quality of life issues. We are waaaaaay beyond the idea of cure these days. Apart from trying to narrow down and find a cool unpronounceable name for what is causing my overall decline, the rest of my management plan is trying to minimise the excess disability so I can maximise participation in life. And you know what puts a big fat dampner on participating in life? Needing to pee like a race horse, every 3 nanoseconds.
(I know, I know, yet another TMI post).
I'm not alone in my frequent peeing issues. It is the bane of many Bobette's lives. We live at extremes, either can't pee, or can't stop peeing. It's a joyous existence. It's bad enough during the day, but during the night, ugh, it's hideous. I already have issues with sleep. Insomnia is another one of the fun symptoms of Bob, and a common lament of patients across the globe. Weeks upon weeks of insomnia, only broken by a few days of coma sleep as your body finally succumbs to it's utter exhaustion. And insomnia is bad enough alone, but if by chance you get the blessed hour straight of shut eye, you really don't want to be woken up by your bodies desperate and unrelenting need to pee.
I've tried all the usual tricks, eg putting the head of the bed up 6 inches, or on 2 bricks. Apart from sliding down the bed in the middle of the night, the only real difference was that it dropped my peeing down from double digits each night to 4-5 times a night. Which is still quite good in the big scheme of things. And by now I've learned to take those little things and stick them in the win column. But really it's still not conducive to living a regular life. Add in that during the day I go through the same process. I drink a glass of water and then within half an hour I am peeing it all out, and then some. Makes remaining hydrated and keeping up your blood volume rather problematic. And each time I have brought this up to my many and varied specialists the answer is always the same, "It's part of the dysautonomia, suck it up".
I am lucky in some respects in that I have a cardio who is willing to listen to me and to consider other options (hence how I found out about Jeff, my mutant left jugular, and was subsequently treated for CCSVI). And this was another time that she came to the table open to discussions. Desmopressin, DDAVP (a biosynthetic form of the pituitary hormone, vasopressin, which increases water reabsorption by reducing the amount of urine produced). This was a drug I had heard used overseas in Bob patients with peeing issues, but not used here in Oz. In fact, despite my cardio being the leading specialist here, she'd never prescribed it for a patient. After presenting it to her as a potential option, she was open to the idea. This is where I know I am lucky. Too often you hear stories where doctors are reluctant, or in some cases downright hostile, to patients bringing ideas to the table. Damn, us annoying patients daring to advocate for our own health! But after nearly 6yrs together I'm thinking we've established some rapport and respect, and that makes all the difference.
After researching it's use in Bob, I finally got the okay. A quick trip to my GP, and a gallon of bloods later I had my prescription. It's not a cake walk prescription though. There are issues with things like sodium levels and fluid intake. It also interacts with a lot of other meds. Plus I will be having monthly bloods from now on. (I am also having weekly bloods to monitor things like my sodium levels initially, just to make sure I don't have a nasty reaction).
It's a wee little wafer you put under your tongue to dissolve. Which of course always makes me think of this Monty Python skit from The Meaning of Life, "
Oh sir... it's only wafer thin". (You can also get a nasal spray and a tablet form).
I will admit to some trepidation in taking that first dose. Last thing I need is to complicate things by stopping peeing altogether or ending up with fluid around my heart. And like every other med, you just don't know how you'll react. Plus there are pesky issues like having to stop drinking 2hrs before taking it and drinking no more than a few sips of water for 8hrs post dose. Which of course all sounds counter-intuitive for Bob, especially when hypovolemia is an issue.
But after taking a big can of harden up I took my first dose before bed, and......
......I'm in love.
I know, crazy lady in the house. But damn it. If Desmopressin was a guy I would totally snog him silly right now.
A whole night and no peeing. None. Not a drop. I'm pretty sure I heard a choir of angels singing when it dawned on me that I hadn't gone to the loo once during the night. And even more excitedly, there was a therapeutic lag. By lunchtime I'd only been twice!. TWICE!!!!! Do you have any idea what that is like? Okay for the regular non-Bob effected readers, you'll be all, "calm down strange lady with a pee fixation. You only went twice, whoopdidoo". But for Bobette's around the world there will be a collective "WHOA". For those of us in the pee like a race horse camp this is akin to solving the Riemann hypothesis. It's damn exciting.
Even stranger, my hr has been stable. None of this tachycardia business. I've been sitting around 55bpm, with maybe a 70 when I stand. After having increasing tachycardia over the last 6-12mths this is quite amazing. Since I've been ill I've also had a headache 24/7. From the moment I wake up to the moment I go to bed there has been head pain, it's unrelenting. But from the morning after that first dose it is dulled. DULLED.
On a practical level, I even managed to get up yesterday morning and make a batch of hotcross buns. I baked. In a hot kitchen. In the morning. This just doesn't happen. mornings have been my worst time of day from the start. Usually, my mornings involve a rigorous program of moaning, lying on the couch and trying not to vomit or pass out. Only punctuated by struggling to lift a pathetic arm to bring the coffee or my tablets to my mouth.
Oh how I love you, little foul tasting wafer of druggy goodness.
Now many aspects of Bob remain unchanged, eg my oscillating blood pressure. And my internal thermostat has been reset to permanent Sahara, with a side of surface of the sun, once more. But I'll take what I can get. And for once in this shit fight of a life, I have had a win.
The question then arises, how much was I peeing out? I mean I knew it was a lot, but I had no idea just how much or that it was making such a huge contribution to my hypovolemia. Given that I am already on a blood volume expander, I must have been filling at least an Olympic sized swimming pool each day with my watery offerings.
So far so good. No noticeable side effects. And if my bloods come back okay I'll continue taking it.
So put that one in the Win Column. Suck it Bob. Suck it!
Why yes, Desmopressin I think I love you.
* Henry V, Act III, Shakespeare, 1598.
haha hilarious you are very funny. Good luck with the DDAVP.ReplyDelete
Thanks Sarah. Gotta laugh at these things. :)Delete
Oh man I am so excited and happy for you! Needing to pee constantly is so damn frustrating, I have been there too. Thankfully endometriosis is leaving my bladder alone for now but I have the joyous side effect of needing to pee in the night thanks to Humira but I'll take that over being awake all night in pain. I'm glad you have finally found something that gives you a bit of relief, definitely worth celebrating!ReplyDelete
Thanks. I didn't realise that Humira had that as a sideeffect, bummer :( Though as you say when it's a toss up between pain and peeing, you'd pick peeing every day. I am definitely celebrating. You should see my dance of joy, it even has jazz hands ;)Delete
I wish I was allowed desmospressin. Sadly my bloods showed it would kill me from water overload if I had it despite the fact I could enter the Olympics for overpeeing. My lovely urologist promised that after my kidney infection was finally treated that the overpeeing would decrease. Sadly that's not the case in me even though it's been the case in his other EDS3 POTS patients. I think because I had the infection undectected and misdiagnosed for over a year until I was referred to my lovely urologist ( by that time I was in severe trouble dehydration wise) that it's caused nerve damage in my kidneys and or bladder. A similar thing happened to my stomach and three years on I've still got problems and pain there 24/7. I'm hoping my urologist will precribe Sativex for me. It's that cannabis spray which in a recent MS trial worked for overactive bladder in 84% of patients. The best thing is you can spray as much or as little as you need. So great for POTS fluctuations. The bad thing is as all governments are paranoid about cannabis drugs it's got a very restricted license even where it is licensed.ReplyDelete
So sorry to hear that Anon. It makes it so hard when our lives are complicated not just by POTS or EDS but other medical issues. I haven't heard of Sativex, will have to look that up. I hope if there is a chance it can help you, that a doctor will be willing to give it a try. I just got back my bloods and they look good so far, but I have to have regular monitoring from now on as my system is so touchy. And I hear you on the stomach front. Mine hasn't been the same since I was hospitalised in August last yr. No one seems to have answers and the only drug they can offer me is about $3,000 a month so not an option. Doesn't matter what I eat anymore, it all hurts and makes me sick every time.Delete
So glad you have a doctor willing to listen to you and try new things. It's awesome you're feeling so much better and I hope Bob's friend PEEEEEt takes a perminent vacation!ReplyDelete
Good for you! I love the winners.ReplyDelete
Thanks Yvette. We have to have a win some times :)Delete
Funny that, pee, is what I want to do most of the time I read your blog. It's just too funny!ReplyDelete
I took DDAVP before I even knew I had POTS. Sadly it didn't help me though, but my POTS isn't really fluid issues. Hopefully it continues to help you! Just watch your fluid intake. If you are used to sipping on water all the time, you could easily send your sodium levels too low which is dangerous on its own. Be sure to check out the warning signs just in case! Take care.ReplyDelete
Just found your blog this evening. So encouraging to have someone get me! I'm not crazy, just, well... I don't know... ill, though most of the medical field probably thinks I'm just crazy.
Anyway, would be interested to hear more how DDAVP hs been for you. After much deliberation, and mestonon and midodrine I'm waiting to see if my insurance will cover it. Too sleep all night without peeing? Is it possible? And to cook? To not lay around for an hour in the morning waiting for the pins on my head to start poking me from the midodrine before I can stand up to care for my kids??? Ooooooo. We'll see. Encouraging to read your post. Thanks!