IC UPDATE

Merry Christmas and Happy Holiday Greetings

A couple of notes….. because i said I’d let you know how it goes…….

I’ve been able to decrease my amitriptyline 100mg to 50mg at bedtime pretty well, I’ve gone slowly over 3 weeks with only some pain in the mornings that don’t need to be medicated. So now I’ll try 25mg plus the PEAORA POLY 500 2-4 TABS Daily to see how that goes.

I read an article in ‘pocket’ last week about studies being done on green lights used with success for migraines and it said studies were started for their use in interstitial cystitis. (IC) Seems pretty simple, just look into the lights for a period of time daily, I just sent for green holiday lights to hang up here to give it a try. Nothing to lose.

I would like to get medical pot but am not a NM resident so don’t think I can unless I become a resident which I would but I have to get my marriage license translated to English to get a drivers license, worth the time and bother? Maybe.

Another thing I learned this week while doing the laundry ( I have a really sad story about that but if I tell you you will think I’m demented already) I met a couple, Eric and Robin Lines, who stay at the RV park close by (where I do laundry). They have formed a company called Silver Solutions. They have a website here, silver@silvermtnsolutions.com that looks very interesting, not sure how it might help IC concerns but I bought a small bottle because silver is used in wound care and it has many other possible uses. In their pamphlet they note that Dr. R Becker discovered that silver ions not only healed wounds quicker, it also caused bone, muscle, and nerve tissues regenerate!! I’d read of Dr Becker when he was using acupuncture and electric therapies in wound care so I have an idea of his work.

Thought I’d pass that along here.

Ciao

IC UPDATE, no good news here

As though having IC is not bad enough now I’ve read that taking some medications long term is being reported as causing an increase in mental clouding….sometimes called dementia.

I’ve taken elavil for about 30 years and I feel sluggish all the time and concerned about my mind.! I’ll start tapering it down while I start something recommended called PEAORA POLY 500 dietary supplement. (sold on the IC website.) This has been used in Europe for years for pain management. I’ve started with one tablet daily to start and will taper back on the Elavil, which is kind of scary, but I’m hopeful.

I’ve added this information from the IC optimist website.

For interstitial cystitis and overactive bladder patients struggling with intense urinary frequency and urgency, physicians often prescribe anticholinergic medications such as Amitryptiline (Elavil), imipramine (Tofranil) or Nortryptiline (Pamelor), Oxybutynin (Ditropan, Oytrol) or Tolteradine (Detrol). Unfortunately, their use has now been linked to cognitive decline and dementia in some patients who use it daily for long periods of time.

New research from the United Kingdom studied the medical records of 58,769 people with dementia and 225,574 without dementia, all 55 years or older. They found that long-term, daily use (3 years or longer) of certain anticholinergic medications were associated with a 50% higher risk of dementia, including: bladder medications for overactive bladder, antidepressants, antipsychotic, anti-Parkinson’s and epilepsy drugs. The study found no significant risks for two other types of medications also used by IC patients (anthistamines and skeletal muscle relaxants)  although the number of patients using them were small. The authors strongly suggested that anticholinergic drugs should be prescribed with caution in middle-aged and older people.

We asked Dr. Robert Evans for his thoughts on this issue. “We have always known that elderly patients can develop mental status changes, confusion and even dementia if exposed to anticholinergics which is why so many of us prefer to use Mirabegron for pts with overactive bladder” he said. “I rarely use anticholinergics in patients with IC as I do not think they help decrease frequency.  The reason is that IC patients void frequently because of pain not because of overactivity. These meds will not decrease voiding frequency since they do not help with pain.  I especially want to avoid them on patients who are on other drugs with anticholinergic activity such as antihistamines, tricyclics or gabapentin.” 

Thankfully self-help strategies can also help! Many IC patients have learned that their frequency and urgency is often triggered by certain foods and beverages.  If you are struggling with symptoms and still drinking coffees, sodas, green teas, black teas, there is hope. You could feel much better in a relatively quick period of time by modifying your diet and eliminating these risk foods. It’s certainly worth trying, right?

Spring/Summer 2019 IC Optimist Magazine

You can find a more extensive discussion of this topic in the Spring/Summer 2019 IC Optimist, the ICN Member magazine. Learn more here! 

References:

  1. Coupland C, et al. Anticholinergic Drug Exposure and the Risk of Dementia. JAMA Intern Med. Published online June 24, 2019. Accessed June 30, 2019 – https://jamanetwork.com/journals/jamai nternalmedicine/fullarticle/2736353

This new study is going to challenge the already challenging treatment of IC, now we can’t take the medications that allowed us to improve our quality of life with IC.

50% is a impressive number!

Miscellaneous Thoughts

Is Charley part horse?

Every time I say how well I’m managing my IC, I get smacked down. Or maybe I think I’m doing so well that I stop taking precautions. it is what it is.

My garden looks great! It has been raining and the winds have let up a bit, I’m thinking about making a raised bed garden behind my studio for mini veggies.

But I also want to upgrade my tiny bathroom with a tiny tub and replace the wall enclosure and that will cost a bit more than I can spend….oh yeah a new tiny sink too. And a new kitchen sink that I should have gotten when I changed the faucet.

Wants or Needs?

I have everything I need right here

human nature is to want more or better, i’m human.

I can’t remember if I told you that we went to Walmart, Charley wore his new emotional support animal ID thing and was super good walking around with me looking for the items I needed to unplug my stopped up shower drain, we didn’t do grocery shopping . A woman asked me what a emotional support dog does and all I could think of to say was that I’m old and live alone, he keeps me company.

I’m going to edit that remark and take a friends advise to simply say he gives me emotional support y mas nada! No more details.

Do you spend much time on the news? I do, too much time wasted it’s such a mess, we seem to have forgotten who we are, or maybe we are not who we thought we were.

Thanks Frank!

It’s getting really hot but hasn’t been windy for the past 3 days and Frank came by today to add 2 more coats of rubber to my RV roof. He says it looks fine and should be good for another two years, that is how often you need to refresh your RV roof. He’s a good guy after all.

I thank Frank for another reason, he is teaching me about pot. I’d tried pot a few times with no effect at all until a few months ago when with my friend Robert I had a most disagreeable reaction. I think it was the third puff I took that changed my opinion about pot. It really did have an effect but not one I would want to repeat. I felt I could not control my legs, very unsteady everything shifted in front of me and I was not in control, scary feeling for a woman used to being in control at least of herself.

I’m told that this can happen with newbies especially if you are not in a controlled situation and we were not, we were out walking by the lake. It was a unsteady scary walk back to my RV but it passed in 15-20 minutes and I was fine.

So why would I pursue this?

I have reasons.

I am hopeful that if I could manage to use pot instead of my IC medications I could stop at least two medications I have to take to keep the interstitial cystitis at bay. I doubt it would heal my sick bladder but maybe control pain because the medications I have to take don’t heal the bladder either and only help to prevent pain some of the time, but one med raises my heart rate so I have to take a pill to slow it down. I could be pain /medication free. If pot would do that for me it would be all good.

Yes, I could get medical pot probably, I don’t know what is involved to get it or how much it costs and yes it is still illegal in NM but won’t be much longer (I’m told). It doesn’t seem to be a big problem to get it, I’ve been referred to a source I’m going to check out. I don’t think anyone really cares whether you smoke it or not. I’d rather not smoke it but need to learn what are the options. I will continue to research, thanks Frank.

Thinking about my RV Roof…..

And I’m wondering  have I  been foolish to trust a man with my money and roof repair.   I’ve discovered that the man didn’t show up to do the work,   actually I still trust that he will get it done, maybe not on my timeline but on his.  He works for the owner of the park part time so I ‘m sure he’ll  come back,  I don’t think  he would lose his job for only $100,  He knows I’m gone and probably assumes he can do the work whenever before I return.  Though we did agree he would do it a certain day.  I asked another friend  to do some exterior work, that I wanted a make over, he just smiled and pointed out some areas of difficulty.   Seems like I’ve run into some people who only see difficulty where I see possibility.

The devilbladderbitch found me this morning and so I stayed home with my son instead of seeing my sister.  She looks good but shaky and weak from her experience in the hospital.  Tomorrow I’ll check in with her and maybe do some shopping.UNADJUSTEDNONRAW_thumb_2aba

 

I wrote the above a few days ago and since then my sisters problems have  became a huge headache, literally she tried all the usual things to relieve a headache without  effect, it was looking like another trip to the ER looking for a answer to this ongoing headache that didn’t let her sleep   rated on the pain scale a 9! But before deciding to go to the ER I wanted to try to see if needling her would help. With the combination of acupuncture (so glad I brought my needles) and deep myofascial release massage of her shoulders and scalp we brought the pain down to a 2-3. Tomorrow I’ll repeat the treatment and I think she will be fine.. So happy to use my skills!

A Note about IC

I dedicated a series of images of a floral paintings some years ago that I thought represented the cycle of interstitial cystitis. Kind of silly perhaps but if you look at the first flower it looks like then the mood begins to worry and then there’s pain and worst pain then slowly improves but one is always watchful until the cycle starts again. These are all images of the same painting digitally modified to produce the changes that to me represent pain.

Interstitial Cystitis.

It’s a Bear, it sEeps your life awayConstant pAin it changes your liFeyour mOod your futureInviSible to the outside but you look Fine nEed toUrinateconstantlycan’t slEEep can’t have seXwithout feArofpain Afraid to eEatafraid afraid afraid

All this and more is the face of interstitial cystitis.

I have  had interstitial cystitis for more than 20 years.  I am one of the lucky ones, most are not so fortunate, my disease has not progressed and I’m stable on the medication I take daily, would I be if I didn’t take the medication?  I don’t think so, I have tried to decrease my meds but when I do i  have a flare so from 10 mg of  amitriptyline I have gradually had to increase to 100 mg over the years. It hasn’t been an easy burden to live with, the first 5-8 years were the worst with frequent flares now much less if I’m cautious about what I eat, avoid stress (which is difficult to manage in our busy lives, but for many they don’t have busy lives because this has changed lives)

I am writing this now because a reader wrote that he has IC and it has progressed.  He thought that a note from someone whose condition has not gotten worse but has  improved  with less frequent flares would be encouraging to other IC’ers, I hope this helps and if anyone would like to talk to me about it please contact me here and I’ll be happy to share what I know about IC.