CP, Meds and the Side Effcts

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fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 7/26/2009 12:12 AM (GMT -7)   
As we all deal with the life that has evolved through our struggle with CP, one thing that I have seen people post and that we have all experienced is the side effects that come with the medications. I am one of those that when the pages of information come with the meds, I read the side effects. At times I read them out loud and we have a good laugh. I also know that the side effects are not funny and at times are so prominent that we have to stop taking the medications. I find that each time I have a change of medications, even generic verses name brand, I have to adjust to the way they effect me. How do some of you deal with the side effects Some are scary, make you sick, are very personal and some are just a nuisence. My meds upset my stomach every night, I have a very dry mouth all night and keep a bottle of water next to my bed along with mints to help with the terrible taste when I wake up at night. I am very careful not to fall back asleep untill the mint has been disolved. Any way, how do you deal with this issue?

infinite
Regular Member


Date Joined Jul 2009
Total Posts : 84
   Posted 7/26/2009 12:52 AM (GMT -7)   
....are the things I feel a side effect of the medications, or of the symptoms I feel - i do not know. I have let you all know I weaned myself off all the narcotics. I am "only" on Lyrica, Wellbutrin, and Robinul. I think the Robinul does more to bring on the effects of this IBS they say I have than before, but that is just my opinion. I was never a "regular" person - but holy crap batman, this past week has been a regular meeting with the Readers Digest in the morning. I don't have any other side effects other that that fatherjohn. Only thing on my nightstand is the alarm clock, which stares at me as a awake throughout the night and mocks me every 7 minutes once the alarm is triggered. It really is amazing how much I want to sleep after 6:30...

I hope you are able to have a restful night and join us agian for a chat!

N8

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/26/2009 6:18 AM (GMT -7)   
My neurologist told me that the muscle relaxers are noted for drying you out, for me it was so bad I could not breathe
and almost ended up in the ER, nothing was as bad as the reactions I've had to eythromycin closest to anaphlasis as I wanna get
and Celebrex which made me throw up every hour on the hour and was in the bathroom, staring at the throne all night and almost all day
the next day, finally stopped throwing up at 3 pm, so from 8 pm to 3 pm, the following day I threw up..

I keep lemon drops or other type hard candy by the bed and sometimes a small bottle of water..
Don't know if this'll help you...
hope you get a low pain day soon FatherJohn and lots and Lots of soft hugz...
(((((((((((((((((((((((((((((((((((FatherJohn))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
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* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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Draka
Regular Member


Date Joined Jun 2009
Total Posts : 256
   Posted 7/26/2009 6:40 AM (GMT -7)   
The worst side effect I had on a medication was suicidal thoughts.... it was when I was on 15mg of Mobic/Meloxicam.... I couldn't figure what the heck was going on.... I thought it may be that drug so I stopped taking it and the thoughts vanished..... it was scary though....

I find myself urinating so much now.... at least twice during the night.....

Constipation is another side effect I hate.... feels like I am carrying bricks around in my stomach.... ughhhh

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 7/26/2009 9:49 AM (GMT -7)   
Draka, N8 and Char, why does it seem that the side effects put is the bathroom so much? Having to pee all the time, either afraid to get away from the toilet or wishing you could use it. We had discussions about constipation before and I have stopped the stool softeners and I am eating fruits and that has helped tremendously.  The things the meds do to our minds can also be scary. We are depressed and the meds can lead thoughts of suicide. Those meds have to go in my oppionion. The Ambien was a bad one for me with the sleep walking. Wouldn't it be great is we took our pills, had no pain, craved food and did not gain weight. Wow, I would take those pills. Getting older has enough side effects of its own and then ths mix of side effects we submit ourselve to to get relief from pain and sleep.  

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/26/2009 11:05 AM (GMT -7)   
Fatherjohn..... yeah yeah
 
Good subject.  I also read all side effects on the sheets they give out.  And yes we have a laugh or two also. smilewinkgrin    I take so many meds with so many health issues I wouldn't be able to put a finger on one or the other unless its a freaky side effect.
 
Wellbutrin (sp) gave me such a headache that in the ER no pain med would work finally found out my brain was swelling from it so an intense disinflammitory got rid of the headache within 2 hours.
 
Zolof made me yawn every 5 - 10 minutes.
 
Morphine makes me itch like the chicken pox
 
My perocets cause severe constipation that so far nothing has helped.
 
Inapsine (type of Phengran black listed now) caused complete body lock.
 
Ryzolt (tramadol ER) causes me to have severe sweating.  Thought it was due to hormones but found out its the pain med side effect.  So far its starting to decrease but I've lost weight from melting... yeah
My list goes on and on.  I guess you would call it hypersensitive to meds. smhair smhair
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/26/2009 12:23 PM (GMT -7)   
Fatherjohn,
I read this after you first posted (as we were both up in the wee hours!) but couldn't decide what to write and I still can't. I think I related to infinite's comment about not being able to distinguish (sometimes at least) between the symtoms and the side effects of the meds.

I think one of the most bothersome to me is not having the sharpness and mental clarity and energy I used to. Is that because of some of these meds? Yes, I think so, but also without them I'd be in pain so would have no energy because of that. Catch 22. I know that when I went in recently for my endo/colonoscopy "combo" I think a lot of the meds got cleaned out of my system, although I was still taking them. I remember being in the outpatient center waiting to be brought in. I hadn't taken any pain meds that day because I didn't want to overdo anything knowing I'd be getting an anesthetic. I was lying there and briefly I noticed I felt like "me" again. I think that had to do with feeling no brain fog, and I was uncomfortable but no in any severe pain.

I felt "me" and I nearly cried because I miss "me". Don't know if that makes sense. The combo of the meds and the CPP and now Barrett's esophagus with yet another strong med twice/day have all robbed me of "me". That's part of that identity issue we've talked about. How do I find and stay connected with my inner essence when I don't feel anything like I used to feel.

I'm starting to ramble.

PaLady

kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 7/26/2009 12:50 PM (GMT -7)   
my worst side effect is nausea. my pcp has prescribed reglan which helps a lot. i have the regular combinux (sp wrng i'm sure) and phenergran too add if i need to. i also get hot really easily. i could live in an iceburg and be ok with all the stuff i take.
you say you laugh at the side effects, i too read the pamplets on every new script i get, but my fave is the tv commercials- they sure tell you all the side effects.
RX's: Pain  Pump (morphine & baclofen on next round); Oxycontin 80mg 2x's daily; Dilaudid 8 mgs 4x day; Zanaflex 4mg 3x's daily; Lyrica 100mg 3x's daily (pain & fibro.); Phenergan 25mg (as needed/nausea); Reglan 10 mg. (30 minutes before meal/nausea); Cymbalta 60mg 2x's daily (pain from fibro); Lorazepam 1mg (bedtime); Bentyl 25 mg 2xs daily; Prilosec 30mg. & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 7/26/2009 6:56 PM (GMT -7)   
Laurie, Many of us have a list of all the meds we have tried over the years and the longer we deal with CP the longer our list seems to get. One thing I have not done is listed all the side effects that I have experienced. Your list is great. It is an interesting time around our house. I deal with all the wonderful issues of CP and cruelty at the hands of the Quackologist in the midst of a full schedule. My wife works with me and runs our front office and finances. She is experiencing her wonderful time of life. It seems we can't get out hot flashed and cold flashes together. It is so funny at times.
 
PAlady, you know I understand what you are saying. I have purposely not been teaching some classes now as I know I am not as sharp as I was. I never was the sharpest crayon in the box. I miss that sharpness as you do. The side effects are not just what happens to us but what the meds take away from us. When I stop for a period, I notice my energy level not what it was either.
 
 Kttn, i have purposely not  had anything prescribed for nausea as I am trying to reduce the number and types of meds I take. I was taking 11 different pills each night. Now I am down to 5. I need to get back in to add one more as my VA Dr. has refused to allow a refill as I have not seen her for more than a year and my PCP took over my BP meds that she was dealing with. My PCP connected my high BP to the pain and thus my WC handles it. My wife and I laugh at some of the comercials and then we get our 18 year old daughter involved and the laughs only increase. My sons have told me they are putting me in a nursing home at some point and my daughter says that won't happen as she is going to take care of me. I told her I am leaving everything to her. This is in a joking way of course.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/26/2009 8:53 PM (GMT -7)   
My cousin and I were watching SNL (Sat. Night Live) once and they do spoofs of the pharamaceutical commercials, but we were listening to an ad for some medication and the list of all the possible side effects and weird stuff that might happen to you and we looked at eachother and didn't know if it was SNL or a real commercial! And she's a pharmacist! Turns out it was the real deal. Scary. Sometimes I don't even read the inserts anymore. On the nexium, I have to take it. I have to take the super max dose. Nothing else was working and I have to make sure this condition doesn't get any worse. So I kind of don't want to know what the darned drug is going to do to me in the long run. All I know is, somethin's gonna kill me eventually! I'm getting tired of trying to figure out just what.

PaLady

bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 7/27/2009 1:37 AM (GMT -7)   
Looks like I fit right in with this group. Tramadol makes me extremely thirsty, cymbalta gives sexual problems, lyrica gave me vivid night mares, morphine gives constipation, the list goes on. I guess at least these did something. What amazes me is the money & time I've tried on new meds that did nothing. One rhuemy was determined I needed anti-inflammatories & muscle relaxers. I'd go back and tell her they didn't help and she'd prescribe another brand. This went on through 3 muscle relaxers until I changed to a pm doctor. He did help and I am still with him but I'd like to have all the money I've spent on drugs that didn't help over the last 6 yrs.

Jag

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/27/2009 3:58 AM (GMT -7)   
PaLady, I totally relate to losing myself, my sharpness and mental clarity to meds and pain. I'm usually on the Rheumatoid Arthritis (RA) panel, even though I've had CP for 12 years. It's been forever since I've really been myself. I have accepted that there are tradeoffs with meds and pain.I sometimes wonder if I will ever be myself again, now that I'm diagnosed with RA and have an entirely new type of pain that doesn't respond to my CP meds, and requires a whole new set of meds with new side effects I'm learning to adapt to. The worst is the prednisone, for the pain, which works well but leaves me feeling like I'm one step away from a mental institution.

I have a very mind-intensive job, where I have to be sharp. I'm 49, went back to college a few years ago, and graduated in 2003 as Valedictorian with a 4.0 GPA, in spite of the CP. I got my dream job 3 years later, and worked my way up to department manager. Six months ago I was replaced/demoted due to my inability to function well because of pain, even though I was still putting out 110% effort, to no avail. I did my job well for 3 years, winning several multimillion $$$ contracts for the company, until the RA pain began affecting me at work.

Now, I've been on disability leave for 12 weeks, and will be off another 3 months according to my doctor. I'm scared...I learned how to function well with the CP (most of the time), but throwing this RA pain into the mix, I have to learn how to function with new pain, new meds, and new side effects all over again, and I don't know if I can do it in 3 months. So I'm pretty scared for my future.
ladywriter
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety

Post Edited (ladywriter) : 7/27/2009 5:07:00 AM (GMT-6)


anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 7/27/2009 6:25 AM (GMT -7)   
FatherJohn, I can relate well to this topic. It seems like we take a med for this reason, then due to the problems/side effects from that we end up with yet another med. It can become an endless cycle.
 
I think the main side effects I have from my meds are the mental confussion, forgetfulness, brain fog, constipation and constant dry mouth. PaLady, I nodded my head in agreement when I read your post. I really understand exactly what you said. I don't have the sharpness I used to have either. And I don't feel like "me" anymore. It is really sad. We take meds to help us live our lives as best as we can, and due to the side effects, it's like we lose a part of ourselves... I wish it didn't have to be this way... But I don't want to go back to no meds and have to deal with the agony of pain like that either. I guess we have to find a balance of some sort.
All we can do is the best we can do.
Anice

Draka
Regular Member


Date Joined Jun 2009
Total Posts : 256
   Posted 7/27/2009 7:11 AM (GMT -7)   
I would like to share with you all the side effect I am currently experiencing.....

(apology to all the men reading this... LOL)

My side effects are due to my cervical epidural.... menstrual irregularities...

I was just finishing my cycle when I received my first cervical epidural.... 10 day later I got my period all over again.... during this time I received my second cervical epidural.... today I am on my 12th.... yes... 12th day of having my period..... grrrrr

If it's not one thing... it's another.... gotta laugh at that!

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 7/27/2009 8:02 AM (GMT -7)   
Well I can relate and empathize to what most everyones post and what they have  said except for Drakas last post, and I can be sympathetic to that one!
 
 I have never been the sharpest tack in the box, but either the meds or the sleep apnea, or maybe both has sure dulled the point and edges allot! I do think the worst med for me, but also the best is predinisone or most any steriod. Sol-u-medrol pack are terrible! Steriods drive me nuts, I can't sleep on them, terrible nightmares, and I am always hungry, ( which I don't need to eat!) and the biggest issue I have with them is I really get emotional when I am taking them! I cry at about almost everything!  Somebody ask "How are you today?" Wah! Wah! Wah! Well maybe it isn't quite that bad! But very very close! Here I am  A man with a big beard working with dieing cancer patients on an Onco unit and I am  standing there crying along with all the family members, while taking caring for their loved ones! It is bad enough being  at home! (They're comming to take me away! Ha Ha, Ho Ho, to the funny farm where life is beautiful all the time....)  That is how I feel when taking that medication! But on the flip side, of all the medications I take, steriods are the miracle drug, for me they stop a UC flare up in its tracks, they take away joint pain ( especially in my knees) bettter that anything I have ever tried! It even helps allot with some of my back pain, it just doesn't last! That medication truely is a double edged sword!
 
 I have nursing books on medications, and one is very extensive, but I purposely avoid reading all the possible side effects a medication can cause. I read about the most common ones and that is all! The drug manufactures list all possible side effects their medication could ever possibly cause, and that can discourage and affect some patients  not to take or use the medication! Including my self!  If I have a reaction I will then go look it up, but I don't want to have the seed planted in my brain ( so to speak) before it happens! Not that it would, but there is always that chance! " Am I imagining this? because I read it? or is this really being caused by this medication?" Do you know what I mean or am I really ready for them to "take me away!" rolleyes ....... yeah
 
White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 7/27/2009 11:02 AM (GMT -7)   
Hokey Smokes Bullwinkle!
Yep, I agree w/ everyone! But what are we gonna do? Lets see if I can even remember all my meds today???
Methadone>> takes away my pain / somewhat but>> makes me stupid, thirsty, constipated and dulls other pains which I should be aware of but just don't feel them!
Oxicodone>> same as methadone but also gives me a rotten headacke after 4 hrs.
Levoxil (thyroid med)>> keeps my hormones in ballance maybe?>> speeds me up, makes the hair on my head fall out, makes me sooo thirsty!!
Nexium>> keeps the acid levels down>> makes me thirsty and since I've been on them and every other script antacid since high shcool, I'm sure something bad is happening!!
Lisinipril>> keeps my blood pressure down>> gives me a sore throat and makes me thirsty!!
Verapamil>> same as Lisinapril>>if I miss a dose, I'm suposed to call the doc or go to the ER!
Tizanidine HC>> helps me sleep and relaxes spazms>> make me soooooo thirsty, hung over in A.M.
Effexor>> keeps me from going over the edge>> Bad withdrawl if I miss a dose, thirsty, who knows???
Testosterone shots (monthly) keep me from turning into a woman and then killing myself>> making me go bald, getting hair in places I never had it before, acne, shrinking my testicles, they are the size of lima beans!> well maybe not that small but 1/3 the size they were but maybe thats not a bad thing at my age???
DIM>> keeps my estrogen level constant so I don't depleat my tear ducts from crying constantly>> must be some side affects, just haven't figured them out yet!
So, to I continue to take all this crap or just stop and turn into a dried up thirsty, crazy, lazy, hungry, crying, eyepopping, sleepless, tired, sweating, cold, hot, sexless eunick w/ the runs???
What a choice!!!
Your friend,
Pete
PS> probably forgot a couple but what the hell> think you got the idea!!
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections once a month. 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, Joseph is on the aircraft carrier USS John Stennis back in Bremerton, Wa. after 8 mo. deployment! and Pete Jr. is on The Asault Ship USS Bataan "The Jaws of the Fleet" somewhere in the Persian Gulf w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/27/2009 3:49 PM (GMT -7)   
Pete,
I hope you don't mind but you have me LOL with your descriptions! I'm not laughing at you friend, but with you. You were able to be so much more detailed and, well, entertaining than I was! And I needed a little lift today, so thank you!

PaLady :-)

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 7/27/2009 5:06 PM (GMT -7)   
Yep, I was trying to be funny PA! I mean>If we can't laugh at poorselfs, then we would be in really bad shape> RIGHT???
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections once a month. 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, Joseph is on the aircraft carrier USS John Stennis back in Bremerton, Wa. after 8 mo. deployment! and Pete Jr. is on The Asault Ship USS Bataan "The Jaws of the Fleet" somewhere in the Persian Gulf w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 7/27/2009 8:37 PM (GMT -7)   

Greeting all. I know I started this but I am not able to keep up. I came home tonight and read with laughs and tears. I mean from 12 day periods (I know from personal experience from living with a woman that this is not good) shrinking testicles Pete is that the baby limas or the big ones, is this insane or what. I just want to take a medication that has the side effect that you sleep.

I was sharing side effects with my Dr and the issue of sex drive came up. I admitted that the meds effected that but my wife wanted to know if he could increase the dosage. LOL yes you just have to laugh.

We can laugh and I am glad we do, otherwise we would go craze. Some of us might be well on our way anyway. We take these meds to help us increase the quality of life and we end up switching symptoms, sometimes for the better and sometimes for the worse.

Ladywriter stated that she wonders if she will be herself again. That issue faces us as we have discussed before. We look at who we have been changed into by CP and the cure or treatment we take to help, and we start wondering if it is all worth it. Yes we ponder the state we are in and think back to when we were more alert, able to work long hours, operate on less sleep and be effective, jump tall building, out run bullets, race trains (the fast ones) and on and on and on. Now I am rambling, that should tell you the kind of day I have had. Now I get to prepare my medication cocktail and wait expectantly for the side effects to hit. Maybe I will take the pills in a different order and it will at least change the effects. Maybe I will turn the pills around and take them backwards. Who knows what might happen. Maybe we could all switch side effects and change them around as we get tired of the ones we have. Sorry Draka, if we change side effects I don't want yours. And as Jag said (my interpretation), we pay the doctors to do this to us. 5000 years from now our medical records are going to be dug up and people will look at each other and wonder what we were thinking doing all this to ourselves. Hopefully they will find that all we really wanted was to find relief and a quality of life that was missing. Blessings all.
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