Rachel Cox

Hi Andy. I hope the SPC will bring you some of the freedoms you are hoping for!

I have had an SPC. It wasn't ideal for me and it was removed. I am now using intermittent self catheterising. For me this is better, but the male anatomy is a different situation... it sounds like you really have tried everything before this. I also want to applaud you for working towards your goal with your wife. What a beautiful thing to strive for. I sincerely hope the SPC helps you.
For me the SPC was a mixed bag (pardon the pun!). It was awesome to be able to see exactly what was going on, and measure easily. It didn't fall out and was tolerably comfortable. But I did have infection problems. The infection problems weren't within the bladder but at the site. We tried lots of different ways around it but it kept getting worse until it was removed. My cousin's husband is a quad and he has an SPC, has for years. His longer term issues have been with bladder infections and blocked caths... he is a big fan of having silicone catheters only; he uses a syringe flush when he needs to. I think the key to any indwelling catheter is management. If you are on to the management you can make anything work, the urologist and nurse will be able to give you the best advice and training. I also recommend increasing your fluid intake if you are using an SPC. All the best and let us know how you get on! Keep your eye on the prize, Andy!

My PCP said that the only thing I could do was to keep managing it with absorbent products and wait to see if it goes away. That is what I have been doing for three months now, except for the one week I had the cath. The cath was a major relief, physically and mentally.

Oh, Racer, how awfully irresponsible of them! This kind of thing makes my blood boil. If your PCP could live for a day with your bladder they would be trying a lot harder to find you some solutions. Yes, a neurogenic bladder is a neurological issue, but it is also a urological issue and any urologist should be able to consult with your neuro to find some better solutions. 'See if it goes away'. Yikes.

Oh and just as an aside, I came off the midodrine because of urinary retention. Midodrine was one of the more effective drugs for my other problems and I was devastated. I am now back on it, after my body proved that in my case, the urinary retention and incontinence cycle are a symptom of my dysautonomia, not a side effect of the midodrine. Just thought I would share as it isn't always wise to throw out the baby with the bathwater... better to take a methodical approach. Just my thoughts...

Hi Racer,

I hear you! I also have problems with retention and involuntary voiding. I have a really great urologist who has been very helpful, so I agree with Hanice, first, find yourself a new urologist. I hope you don't mind me sharing how I tackle these problems, so you have some context for the way it is treated in our part of the world (sorry, not sure where you are from, but I am in New Zealand). My urologist had a home care nurse come and teach me self-catheterisation. When I am retaining, the pain can build to such incredibly intense levels. I know, now, when it is starting to happen. It took a while to train myself to be mindful of the signs. For me, mild headache, flank pain and irritability are the key factors. I have catheters delivered to home and a pretty good system, I made up a catherisation kit which lives in the cupboard next to the loo. Most people wouldn't know if they were visiting that me "going to the bathroom" was a bit more of a manual experience. I have got the 'knack' now and it is fast and a huge relief. I catheterise in the morning and at night and in between when I feel any of the warning signs. It has stopped me going to hospital on numerous occasions and I am incredibly grateful for having the power of management returned to me over this issue. After a while, you get used to your typical bladder volume and you can judge whether you have fully emptied or might need a return to do it again in short order. It's not nearly as awful as it seems. Having a catheter in for a fixed period of time is much riskier. I had a supra pubic catheter for a time and the issues it caused were far more destructive than it was worth. I am a huge fan of independence.
When my autonomic nervous system 'swings' me the other way, into incontinence, I take a pill called 'Vesicare'. It doesn't stop the voiding altogether, but it reduces the amount of times I go in a day and that helps me to manage things. I also use continence products, there are some pretty good ones coming on the market.
All in all, I feel like I have control over the management of my bladder, if not over the bladder itself. That is a beautiful thing, to feel in control, to have a system. Once you have found yourself a new urologist, ask them about the possibilities of these approaches and if they will work for you. There is hope and I know you feel really awful right now. Hope you find the answers you need real soon.

Hi Amber,

Parkinson's disease includes autonomic dysfunction in it's later stages, so you may well find quite a few symptoms in common with her. My specialist doc said that the odd thing about dysautonomia in my case, is that it would be an expected collection of symptoms in someone with later stage MS or Parkinsons, but I have no obvious disease to cause it.
Try asking your rellies about people further back in your line, aunties, uncles and cousins. Lots of people on here have turned up interesting facts about their family health connections.

You might need to get your intraocular eye pressure tested. I was on fludro and began to develop glaucoma from it. My doctor discontinued my use of it straight away. Glaucoma can make you blind so this is not a side effect to just muck around with. Have you had increasing headaches and blurriness too? Please get it tested. Any optometrist can check eye pressure and will tell you straight away if it is dangerously high. Then talk to your specialist who prescribed the fludro as soon as you have your pressure results. Take care s-pot!

Hi Clair, I suspect it is the high temperature of the water. You were in for half an hour which is a long time in that kind of heat. I know I would feel all those things you mention if I spent even half that length of time in water that hot. My body just can't thermoregulate effectively and it takes a very long time to get over it. Do you have a similar experience after a bath? I suspect it is about how your body handles heat. It is so frustrating when well meaning people suggest things to help that trigger other issues.
Hope you find another solution.
R

I went in the shallow teaching pool, the water temp was 32C (89F), I spent 30 minutes in the water just floating, holding on to the edge and floating my legs out and I swam a few of widths, no more than 50m in total with a breaks in between.

Hi Natops, I have found a combination of Pyridostygmine and Domperidone to be the most effective drug therapies for me so far. It's not perfect, but so much better than before. Good luck with finding what works for you, these symptoms are such a big part of the overall experience, if you can improve them, quality of life is so much better. Take care!

As hard as it is, I think we have to strive for balance between the inward focus on what is wrong with us, and the outward focus of getting on with as much as we possibly can. Over the years, I have found that I have to monitor how much time I spend here, and elsewhere online, reading and thinking about research and the nuts and bolts of my condition. It's true that it is my own research that has driven the best treatments I have received to date, but I find for me, it's important to have other distractions for my mind. When it becomes all I am talking about, I take a break from the forums and pages for a while and try to focus on other things. I never get to take a break from the experience of what is wrong with me, but I have learned to practise a different habit of thinking. I think it is really good for me to force myself to push through. I do it for the sake of my kids and my man. I strive to create great memories with them, often at big personal cost, but nothing is more worthwhile. I often think that I have been given a gift. Of conscious awareness of the preciousness of health. I observe the health of my family with such gratitude and try to find vicarious joy wherever I can. Sometimes that is impossible, but it is a happier mindset than being inwardly focused. I hope you find the pathway that works best for you and get to find some happiness in there too.

The recent autoantibody article re: POTS & autoimmunity stated that there were autoantibodies to mitochondrial enzymes. I'm starting to really feel that this whole mess of syndromes that seem to come in groups for many of us become a "chicken or the egg" question.

Find the root cause, and treat it, should be the real goal. If it is autoimmunity, does treating that clear up everything, or most everything? There don't seem to be enough cases where this has been attempted and studied to get a definitive answer.

I know, right?! I wish someone would do a research study with a split group of dysautonomiacs, where they give IVIG to half and placebo to half and see how the dysautonomiacs respond.

Charlotte, for me florinef was worse than useless. I have never hated a medication so much. But midodrine made an immediate difference to my peripheral blood flow. Midodrine and Mestinon can be given in conjunction. I have a very cautious doctor, he took some time to research and decide but felt the two together would be beneficial. So far so good! This week I taught again for the first time in seven months. It was certainly trial-by-fire as I was given a year One class for the morning. Oh my. I managed and I have to attribute that to the meds!

How much B12 are you having? Are you getting enough to address the deficiency?

Hmmm, mitochondrial disease was suggested at the grand round for them to look into for me, but when I looked at it I couldn't see the fit.

oh. wow. thanks for sharing!

Hiya, I'm on mestinon and love it. Combined with midodrine it is working a treat for me. All the best with your mestinon journey :-)

(Incidentally, I found it most helpful for the GI issues, do you suffer with these?)

Yes. This drives me nuts because I don't feel like I can get my head around everything in order to interpret it properly. A few minutes to explain things would work wonders. I recently got my medical record from the hospital and was surprised by some of what I found. Other bits didn't make any sense to me at all. Wish I could access my old brain. I miss it.

Thank you.
Issie, I am working on all the avenues I can work on myself, in addition to the meds. My diet has changed drastically compared to before my diagnosis. I am taking supplements but I am wary about what to take and slow to start new things without lots of investigations. Rama and Anna, my neurologist said my pandysautonomia was progressive and not autoimmune, my specialist thinks it is and we haven't found the cause yet (but he's the one moving on). So I guess we will see what comes next. Tonight I am just tired from the journey and not very optimistic. Tomorrow will bring a new day and a new opportunity to see things differently. Corina, you are right, this IS just part of it, life is worth being grateful for and I would pay far more than this torture for time with my husband and children. It's worth it, just tiring and disheartening some days.

You guys are lovely. Ta.

appeal!

feeling really frustrated and totally glum.
Just had a call from my very lovely doctor, who against the odds, sent my bloods all the way from NZ to the Mayo. He printed out the result form for me, but told me I had to wait to hear back from his immunologist colleague to see if they were useful results. I had a result for GAD65 and the results form had a blurb about that. But apparently, my results are not useful. The immunologist said they are negative. I am 0.04 nmo/L off 'clinical significance' and therefore don't qualify for IVIG. He said he understands my frustration but that I can take heart in that my progression is slow compared to some. As a geriatric specialist I have no doubt he sees faster disease progression than mine. But I am 38 and I have a GOOD LIFE I want to lead! I want to find out what is going on! I am so frustrated. I can eat and digest only because of pills. I can pee and poop only because of pills. In the background, the nerve damage is still occuring and one day, those pills won't work anymore. He has explained that to me at previous appointments. Now, he's discharging me into the care of someone new and I am so worried that they won't care, about me, as a person. I am worried because in the last four years I have seen a significant decline in my ability to function normally, I don't think I can handle drifting along, watching my own decline and doing nothing. Surely IVIG is worth trying? Why won't they? I would try anything and everything. That makes me an annoying patient! Bugger it, I don't want to be a patient of any kind!! I don't usually cry. Tonight I have cried. I'm sorry to vent but I know if anyone understands this it is you guys and I feel very alone. This is not my beautiful life.

Up and down for me. When I was first diagnosed I had lost 17kg ...then gained it all back, then last year I lost 10kg in a very short time (four weeks) when my GI issues really flared up. Now I am about 20kg heavier than my optimal weight. It is very distressing and I am sure exacerbates my problems. I particularly hate the wardrobe issues with all the fluctuations. I have about eight pairs of jeans and at present only two fit! The others will fit again, it seems to be a random fluctuation with me. I never know when my digestive tract is going to cause me grief.

Hey s pot.
I am sorry to hear about your frustrating turn of events. I have had swings many times into worse territory, then better, then worse; it seems to be the MO of POTS. The swings are slow and frustrating and often meds don't cut it. The upswings seem shorter and less 'up' than I would like! Ultimately it comes down to the fact that POTS is not an easy thing to treat. You are so strong to cope as you do. Hang in there, stay positive and I hope you will see some improvements soon. I am sorry to hear about your work... mine has gone by the wayside lately (I teach) and I feel so sad about that. I just hold on to the hope that one day someone will figure something out and I'll get back to it. There is so much more research being done now than when I was first diagnosed that I feel really hopeful. I don't know anything about MCAS but plenty on here, do. I'm sure you'll find new avenues to research in your quest. Gawd, your stats on the TTT are awful, you poor poppet!
Just wanted to say hi and send you some empathy.
-Rach

I am really interested to hear how you go. Issie the info I read about piracetam said it had no effect on GABA. It's a cyclic derivative of GABA but "GABA brain metabolism and GABA receptors are not affected by piracetam". This was only on wiki though so I don't know how accurate it is.

That is such positive and wonderful news, thank you so much for sharing! Long may it continue :-)

Hi, I don't know how common either, but a long QT interval is what started the ball rolling for my diagnosis. It alerted them to refer me to a cardiologist and the rest is history.

I asked my doc too and he said that ephedrine was non selective. I don't know what he means, but he has put me back on midodrine instead and honestly, the difference taking both mestinon and midodrine together is FAB!