Medication Ethics

[firewatcher]

Issue #1--Can you be addicted to a medication that is being prescribed and helping? My neuro wants me to up my Klonopin dose and doing that does help, but I also am developing tolerance to that dose...so up it goes again...so I am resisting. He says it is a dinky dose and not to worry, but I would rather find either the cause of my headache or another medication. Actually, I'd rather have no headache at all!

Issue #2--The estrogen in the next "round of trials" for me is Premarin. I have ethical issues with the way that drug is made (OK, I'm an SPCA bleeding-heart!) since there is a mistreatment of animals involved. Have any of you refused a medication because of the way it is made, even though it would make you feel better?

It seems like we are all taking meds off-label from what they were designed for. I am waffling between "whatever it takes to feel normal" and addiction/ethics. I don't like taking medication anyway, but it improves my symptoms and quality of life, so that grey area in the middle is getting larger.

Anyone else?

[potsgirl]

Firewatcher,

I have been on Klonopin for about 8 years now, and have tried to go off of it a couple of times. You didn't say how long you'd been using it, but I can tell you that when I've tried to go off my 'very low dose' of .25 mg, I couldn't do it. It made me sick and very anxious. I couldn't sleep and had tremors. I haven't increased my dose, but I also take Trazodone and 15 mg of Paxil. I know I am addicted to both the Klonopin and the Paxil. But, everyone is different...

I have a problem with being on a steroid, so I won't take Florinef. I've tried it, but got too sick and had too many headaches. By the way, has your doctor tried to give you a preventative migraine med like Topamax? That may help with your headaches if they're basically daily, like mine are.

Hope this helps a little.

Peace,

potsgirl

[firewatcher]

Firewatcher,

I have been on Klonopin for about 8 years now, and have tried to go off of it a couple of times. You didn't say how long you'd been using it, but I can tell you that when I've tried to go off my 'very low dose' of .25 mg, I couldn't do it. It made me sick and very anxious. I couldn't sleep and had tremors. I haven't increased my dose, but I also take Trazodone and 15 mg of Paxil. I know I am addicted to both the Klonopin and the Paxil. But, everyone is different...

I have a problem with being on a steroid, so I won't take Florinef. I've tried it, but got too sick and had too many headaches. By the way, has your doctor tried to give you a preventative migraine med like Topamax? That may help with your headaches if they're basically daily, like mine are.

Hope this helps a little.

Peace,

potsgirl

My neuro has moved me up from .25mg daily to .75mg daily. This headache is completely unresponsive to all the migraine meds and while one-sided, is NOT like my migraines. I came off the Klonopin for my ANS testing at Vandy, my doc and I came up with a slow taper schedule that worked really well, except that the headache came back with a vengeance. I'd like to try Indocin for Hemicrania Continua, but my kidney function tests contraindicate it, and my neuro says if the Klonopin is working, why change it. I know I am addicted to it now, but if a drug is doing what it is prescribed for, is it an addiction? or just working?

[Shimoda]

1) Definitely it's okay to be addicted if you need it anyways. What does it matter anyways? You need it, it needs you. It only would become a problem if you should need to get off it.

2) I'm a vegetarian and a bleeding-heart too. However, meds are meds. Don't every sacrifice your health for the sake of a political stance. Although I agree with you, hurting yourself by not taking the meds won't make the company do any less bad stuff. You'd simply be hurting yourself.

[janiedelite]

Hi Firewatcher,

I take narcotic pain meds as needed for my neuropathy pain. I also have chronic hip pain (from a car accident) and took narcotics over the last couple years in between my two surgeries. It ended up being that the surgeon missed a ruptured ligament during the first surgery so I was walking on a ruptured ligament for 16 months til the second surgery in 1/08. During those 16 months, I was in so much pain I quit my nursing job and had to use crutches or a cane to walk. I was on every non-narcotic pain reliever possible but my stomach got so irritated. I couldn't sleep through the pain and narcotics and benadryl let me sleep.

Then the hip improves after my surgery in 1/08 (very gradually) and this burning neuropathy pain starts in full force in 6/08. Again, narcotics and benadryl are the only thing that helps. I can't tolerate meds like neurontin and lyrica due to side effects. During flares, I try to take the minimal amount necessary to keep me sane through the pain but during the warm months (june to october) I take narcotics on a pretty regular basis. I know my body develops a level of tolerance and DEPENDENCE to the drugs while I'm taking them regularly, but I'm honest with my docs about my pain and medication use. Before POTS, I could definitely tell when I was going through some withdrawal because of the nausea, jitteryness, etc. Now, I never feel when I'm going through withdrawal because of my constant POTS symptoms.

I've never had to take benzodiazapines (like klonopin) regularly, but my mom does to help her control her carcinoid syndrome symptoms. She's been on xanax for years. She can definitely tell when she misses a dose, but it still helps her even though she has certainly developed a tolerance and become physically dependant.

I think as long as you're honest with your doctor about your symptoms and how often you take the meds, that these meds were invented for people like us!

Addiction occurs when you are emotionally/psychologically dependent on a medication. Dependence is a naturaly result of taking these meds, though, and nothing to be ashamed of!!!!!

I certainly understand your hesitation to increase your dose. It's good to be honest with your doc about your concerns to make sure there are no other options available, and to hear about his experiences weaning folks off of the drug.

[tinkerbella]

I have found this and worked this out with all my team. I take the smallest amount of whatever now gives me a quality of life. I fought to do natural root

but then I just couldn't afford to do that. Using as much nutritional drinks, vitamins, teas and stuff like that still. Used to use cinnamon and dark chocolate for a while for as long as the doctor would let me.

I can't take and won't take hormones ever again and wish I had known that years ago more about them. My PS/neuro feels that most pots patients can't tolerate them. Once off them the weight dropped off and the mood stabilized. I had been on birth control pills forever and they slowly put on pounds and pounds and once I was told I was I stopped. Then last year started post menopausal bleeding and was told I had possibly had cancer as the lining was way too thick for a woman my age. I was now having heavy periods again, they had no idea of how this had happened, and they put me on PROVERA.

Within a week I WAS bleeding worse and could hardly breathe. They cut the dose, still didn't work my posts was out of control. The gyn wanted surgery

to remove everything and put me on MEGACE. I was now totally out of control, put in the hospital, given another stress test with the worst chest pain in my life. I thought I was dying, they keep seeing something on the ekg and held my hands as I cried. FELT LIKE I was being stabbed and stabbed. THE HAD THE CRASH CART READY, STARTED A IV OPEN WIDE. I started praying to die the pain was so bad. I decided at this point I had had enough and could take it any more, especially being all alone as my family all away on vacation.,

They called the cardio doing the test and he said I was having a pots flare from being with held fluids and flood for too long. I believe it was from the hormones and having to position my arms over my head for so long also. HOSPITALIST, WALKS IN AFTER LIKE IT WAS NOTHING AND TELLS ME HE JUST READ ABOUT POTS ON LINE AND YOU GET CHEST PAIN. I want to throw my dinner at him, as he tells me I can go home after dinner. YES, DRIVE MYSELF HOME. I could hardly walk, I hate going to just the regular hospital, the hospitalist just doesn't get it, nor do they know you. I kept telling them I was falling at home and near passing out at night. So they send a useless visiting nurse for a week dischages me with with a BP of 160/100 and a near bowel obstruction. I end up in hospital again.

and my iron was at a 4. I should have had a blood transfusion.

Back to the story, my doctor never got this information in the notes of my stress test they left this whole piece out. I was furious and he was also!!!!

SORRY for the little rant, if you start any hormones and you notice you breathing changes and you get extra tachy STOP THEM! I never had surgery the cardio, wouldn't let that doc. I got sent to a cancer sp. who did a very deep D&C at the best hospital in Boston as my vital are not stable. I have a year not to bleed to be considered safe from the cancer. So far so good and no surgery, too many woman have surgery too easily. I'm not having major surgery and for me they told me it would be due to having an ectopic preg. in the past they would have to go in that way.

I had to pull out notes from way back then and found out my heart was fast under then knife when I was just a young woman. I know I've had the pots forever.

Good luck everyone with what ever you decide to put into your body. Just remember it's your body, ready about it first educate yourself and make smart decisions with your team of doctors. Make sure they all communicate and have signed permission to.

[flop]

Firewatcher,

you ask if you are addicted to klonopin. You managed to come off it for your testing at Vandy by tapering the dose - this suggests that you are not addicted. An addict would have a really hard time coming off a long-term medication and would have lots of withdrawal symptoms. The fact that your headache returned suggests to me that the klonopin does help with the headache.

Tolerance - our bodies do develop a tolerance to some medications if we take them regularly for long periods of time. Narcotic painkillers are the classic example but you can get tolerant to benzodiazepines too. So long as you are aware of this and discuss all dose changes with your doctor (as you are doing already) then you and your doctor are more in control of the dosage. A slight increase every now and then neededn't be a problem.

Addiction - when you absolutly have to have a substance in your body, without that substance you can't function. (Imagine a heroin addict going "cold turkey"). You have withdrawal symptoms if you don't take the substance regularly.

Dependence - there are 2 types of dependence to medication. A psychological dependence and a chemical dependence. Take cigarette smoking as an example - smokers are chemically dependant on nicotine (ie addicted) but they are also psychologically dependent on the behaviour of smoking. That is why things like nicotine inhalators can help, and also breaking the associations with smoking (ie if you always have a cigarette when you go to the pub try avoiding the pub and doing a different social activity).

The terms all get mixed up in everyday usage.

I take Paroxetine (an SSRI). I know that if I stop taking it that I get withdrawal symptoms (found out by accident last year). I know that if/when my doctors and I decide that I should come off it that I will have to wean off very slowly. I knew this before starting the paroxetine but made the decision that the benefits of taking it were likely to outweigh the problems of addiction/dependence. It is all about getting information and discussing with your doctors, deciding which is the bigger problem - the headaches or the need to take klonopin?

Flop

[firewatcher]

Well, I am definitely dependent and developing tolerance. However, it is the only med other than Lyrica (had to take A LOT of it) that makes the headache manageable; especially since they have stopped looking for a cause of it. It's ALL a POTS thing now. Even a hangnail is a POTS thing now.

As for the ethical estrogen, it did not have the same effect, so I'm back on Estratest. I don't want to know if it is one that uses pregnant mare urine, so I am not looking. My marriage is worth a great deal to me, as is my mood and family's happiness...for me, right now, ignorance is a tolerable compromise.