Confused about Medications

[runnermom3]

Let me start by saying I'm still in limbo, and am in the early stages of trying to figure all this out and have been struggling with all this for about 8 months. My doctors are caring but seem just as lost as I am, at least it seems like they are all just guessing at everything and playing "trial and error" with me. Anyway, I hate this whole prescription "game". This whole "oh you have this symptom? well here's a prescription to help" but then when I take the prescription it makes 3-4 other things worse. Which I then need another prescription to help with. That seems to happen with EVERY prescription I've taken. I HATE TAKING MEDICATIONS. I'm a natural person and like to take natural solutions to health problems. I've never been the kind of person that takes medications for colds or headaches or anything else for that matter. I don't take pain meds unless necessary. Really, I don't even take acetaminophen or ibuprofen. So this has been hard, needless to say.

Long story short, Ive had bad fatigue so I've had to start drinking coffee twice a day. This is big, I've avoided caffeine for years, but it's now the only way I can we through the day. I literally cannot keep up with my three kids and their needs without it. I probably need more of it. I had to go on a migraine medication; side effect: increased tingling and numbness, confusion and memory issues. I had to go on a medication to help control my nausea (caused by my dizziness and vertigo); side effect: headaches. I had to go on a medication for my allergies (never had allergies until this year, but I recently moved 300 miles south, so it makes since that now this pollen bothers me more); side effect: dizziness. Recently started having muscle spasms in my neck, shoulder, and back so my PCP prescribed a muscle relaxer that I'm supposed to take. Side effects: dizziness, numbness, tingling, drowsiness. The only "medication" I haven't had a problem with is my Vitamin D3 Supplement.

It seems like all these medications work against each other! How am I supposed to be able to tell what is side effect of medications and what is MS symptoms when both things cause numbness, tingling, headaches, dizziness, memory issues, confusion, etc?? I'm ready to just stop taking everything all together and see what my "baseline" is again. I'm only 8 months into this process and I'm already extremely frustrated with the entire thing. I can't imagine how those of you who have been at this for years have done it! How do you find medications or therapies that actually work for you? I just can't stand the idea of taking a medication to solve one problem if it's going to cause another.

I guess I'm just looking for words of wisdom...

[dastardly]

Hi Runnermom3 and welcome to MS, I have also been on this roundabout trying to find out drugs that help and work with each other, don't just stop talk to your Dr first and as to headaches I now get botox injections every 3 months around my head and down my neck they sting like heck but this has changed my life good luck with your search for answers Craig


**Edited by moderator in compliance with Guideline 4

[jreagan70]

when I take the prescription it makes 3-4 other things worse. Which I then need another prescription to help with.

Unfortunately, what you're experiencing is fairly common. You haven't done anything wrong, and the doctors who seem to be only guessing at everything and playing trial and error aren't doing anything wrong. It's just the nature of biochemistry.

Receptor sites for particular chemical molecules exist all over the body. In biological system A, the activation of the receptor site by the molecule produces outcome A, which might be wanted; in system B, activation produces outcome B, which might be unwanted; in system C, activation produces outcome C, which might be so negligible as to be neutral. Which outcome "wins" when the molecule is used as a medication depends on how strong the outcome is.

In the presence of the chemical, the receptor sites are activated all over the body, producing both wanted and unwanted outcomes. It's not possible for only certain sites to be activated and others not based only on the presence of the molecule. It's like all the cars in the mall parking lot having exactly the same security code. When the signal is sent from the remote to open the door of one car, all the cars in the parking lot open.

That's a little oversimplified because 1) biological systems in humans are more complex, and the outcome produced often depends on the activation of numerous receptor sites, and 2) individual bodies differ somewhat in how they express the outcome. That's why no one medication works for everyone, every time, and why there are so many medications available that are intended to do the same thing -- their chemical structures vary a little bit to try to be responsive in certain biochemical environments where other chemical structures don't work as well in producing the desired outcome.

Sometimes it can be known with reasonable certainty a person will have an undesired reaction to a medication, but sometimes it isn't know how a person will respond at all. Because humans' biochemistry is so complex and everyone is different, it's impossible to completely predict how any one person will react to any one medication. The only possible thing that can be done is for a person to take a medication and see what happens. It's stimulus, response, and evaluation.

To call it trial and error isn't correct, because that presupposes that an undesired outcome is an "error," which isn't always true. A certain number of Outcome Bs are built into the nature of the biosystem. They're expected to happen and, statistically, they aren't errors. It's only the value that's assigned to them that lead to them being considered "errors." The Shakespeare quote is applicable here: "There is nothing either good or bad, but thinking makes it so." Value judgement is so important that I'm going to come back to it in a minute.

The only "medication" I haven't had a problem with is my Vitamin D3 Supplement.

"Chemical" is probably a more accurate term in this usage. A major reason that vitamin D3 is the only chemical you're using for medicinal purposes that hasn't caused a problem is that it's an inherent component of the biological system. As a required element, there's no programming built into a normal human body that would produce an undesired result. Undesired results come when there is so much D3 in the body that it knocks other chemical balances out of whack, but that's a whole different situation.

It seems like all these medications work against each other!

As you've seen, that can happen. And the more medications a person takes, the greater the chances that it will.

How am I supposed to be able to tell what is side effect of medications and what is MS symptoms when both things cause numbness, tingling, headaches, dizziness, memory issues, confusion, etc?

Sometimes it can be done by paying very close attention to the quality and quantity of the symptom and looking for patterns of occurrence. But often it can't. And the more medications a person is taking, the more impossible it can be.

I'm ready to just stop taking everything all together and see what my "baseline" is again.

I'm ready to just stop taking everything all together and see what my "baseline" is again.

That might be the next logical step. It's what doctors do in situations like yours when there are unwanted side effects from a medication, and when they need to determine whether a person even needs to be on a medication any longer, and the person is taking too many medications for that to be easy to figure out.

BUT it has to be done carefully. Some medications CANNOT be abruptly stopped. So you'll have to work with your doctors to determine if you're taking any of them and find the safest way to stop taking yours. With a clean slate, you can start again to determine which medications are actually helpful and might have a side effect profile you can live with.

I can't imagine how those of you who have been at this for years have done it! How do you find medications or therapies that actually work for you?

We do it just the way I described. With disease-modifying meds, either the doctor picks one or we, as the patient, pick one based on some characteristic (or combination of characteristics) that sounds the best to us of all the drug choices. For symptom-relief meds, it's usually the same process. But again, since there's no way to predict how any one person will do on any one medication, you have to start somewhere. With the unknowns being equal, you have to just pick one and start, and evaluate from there.

Some people have been successfully on one disease-modifying med for many years; other people haven't gotten good success and have been on many meds over the years. And some people have been on the same med for many years in spite of it not being particularly effective (but that's a different discussion).

I've been on 12 different disease-modifying meds over the years. That means 11 meds that weren't effective at all, worked well but eventually caused side effects that were so bad I couldn't continue, or caused intolerable side effects very early on that made it impossible for me to continue and I never go to find out if they would have been effective.

Yes, some of the meds had side effects that required another one or more medication to deal with. The most effective med I was ever on was the one that required numerous other medications to deal with the side effects. But eventually, even that wasn't enough and I had to stop the med before reaching the 1-year mark.

How do we do it? The more successful of us do it by understanding and accepting that 1) everything is a trade-off and 2) keeping our emotions out of it.

I HATE TAKING MEDICATIONS. I'm a natural person and like to take natural solutions to health problems.

You understand that your beliefs about medications are at the heart of your frustration. Nothing can go well when the emotion driving your responses is HATE.

You developed a definition for yourself and a belief system that worked for you under a previous set of circumstances. The longer they worked, the more convinced you became that they were "right." The more "right" you believe them to be, the more loathe you are to change them.

The probem is that the circumstances have changed, and it's left you holding onto a belief system that no longer works for you in the new environment. Your own beliefs are now hindering you. You can't change the new circumstances. You can only change your belief system.

You've already started to do that, which is good. But you're still holding onto the emotions and misplaced value judgements that are leading to your frustration.

I guess I'm just looking for words of wisdom...

"There is nothing either good or bad, but thinking makes it so." If you can figure out how to dump the judgements and emotions you've attached to neutral choices, the frustration will lessen or disappear and your quality of life will improve.

Everything is a trade-off. The task is to decide whether the benefit you get from the use of a medication outweighs the risks you take and/or the unpleasantness you experience. In performing that task,Your responsibility to yourself is to make the most educated, logical, unemotional choices you can, and then don't second-guess yourself. Monitoring the situation to re-evaluate whether your choices are still appropriate for the circumstances is proactive and necessary. That's entirely different than second-guessing, which is based only on emotion, which knows no reason.

When dealing with neutral situations, take the emotions out of it, make your choices, and move on to something else that gives your life real meaning.

[runnermom3]

Thanks

Thanks for the simplified biochemistry explanation. I hadn't thought of it that way, but of course it makes a great deal of since. The medication I've tried simply aren't the medications that work best with my biochemistry. I just don't appreciate the "trial and undesired outcome" that this whole process relies on. With all of our high-science-medical-know-how you'd think they could just run some tests and determine which drugs will work or not work with the fewest "undesired outcomes" (I know that they already do this for some conditions and medications, so it doesn't seem far fetched that they could do it for MS also).

I'm sure that there is a "line" somewhere where side effects of medications are less undersized than the conditions they are treating. Maybe I'm just not there yet with most of my medications. Certainly my migraine medication is necessary. The pains of my muscle spasms (and what I believe was my first MS hug that I experienced Thursday evening and then again Saturday) are bearable still on regular OTC painkillers that I don't need to resort to a prescription with side effects. But I understand that may change, and probably will change.

Your right, this whole thing takes a complete change of mind. I'm still early in the process. Without having to try every medication to find the "exact right one" how do you KNOW when you've found "the one"?! It's nearly impossible at this point for me to take emotions out of the equation. It may be illogical, but this is my life and I have to make it liveable. If the medications make it less liveable then the condition itself then how is that any better? Emotions tell me as much as logic. Logic tells me that the chemicals might be good for the disease and might keep it and it's symptoms at bay, but if their bad for the rest of my body and effect the rest of the aspects of my life then I must rely on my emotions to tell me that. I have to trust my GUT which is largely emotion based. For example, if the medication often causes depression and anxiety (which I know many MS medications do) that will negatively effect the rest of my life, even if my MS is under control. Of course then I'd be put on depression and or anxiety medications, many of which cause weight gain, which is another side effect I would have a difficult time dealing with because it would further inhibit my physical abilities (and therefor cause further MS issues because I couldn't exersize). You see what I'm saying? It's so complex that I don't think you can think about it solely logically, emotions must play a part in it. We're not Vulcan lol.

And I think your right. I need to rethink and reevaluate my beliefs on medications. Hate is a powerfully negative word and it is probably hindering my ability to consider medications and their side effects in a comprehensive way. I've always been a holistic person. Not in the home remedies, healing stones, and hippie-dippie since of the word, but in the "treat the person as a whole" since of the word. I think that all medical conditions should be treated as a part of over all health, which includes healthy diet, exercise, and an understanding of the things that we put into and onto our bodies and their effect on our bodies. Part of that holistic belief is that the fewer chemicals we can ingest the better. We already ingest an exorbitant amount of neurotoxin in our daily life just as part of necessity in living in this modern world with our mass agricultural and industrialized lives, so intentionally adding to the list of chemicals is a difficult for me to come to terms with. The chemical must really be "worth it" to me. My experiences so far are that many aren't worth it, so perhaps I'm slightly jaded by the experience. But then again, I'm also only 8 months into this process and don't have an official diagnosis yet. I get the results of my EPT, NCS, and EMG tomorrow. So we'll see where this adventure takes me. According to a man and character I admire greatly, "Change is the essential process of all existence" so perhaps change in perspective will be necessary for me as well.

[sarabeach123]

If you prefer a natural approach, perhaps you should consult a naturopath. There are lots that are open to discussing medication - you just have to find the right one. Some of them will want you to not use any medications, you just have to find someone who is a good fit for you (just like finding a good doctor who will work with you)

I know for me, I still want to stay on Tecfidera, but I really am not a huge fan of medication in general either.

Going gluten free sometimes helps people enormously with their energy levels, I know it did for me! Also taking a good probiotic!