Forced medication holiday and question for all parents

Hi All,

Well, I have had a rough few days- the headache has been horrendous and the fainting has been scary.

After I fainted on the stairs the second time, my mother decided that the medicine was causing all this. So, she took them. I am allowed a few tylenol3 for today, but thats it. This all meant that I tried going cold turkey off zanaflex replacing it with sonata. Sonata doesn't work as well. About midnight, I found a 4mg Zanaflex and was able to sleep. So now the headaches a ten and I have very little recourse.
It gets worse- she is also blaming caffeine for the fainting. Caffeine has always helped me. I drink 1-2 diet cokes or iced teas a day.

I do not understand. There have been many times, when to prove that medicine wasn't causing the fainting, I have stopped it. Only then, it only mean that I asked them to keep it and then asked for it if needed. I tried to set up something like this last night, but was told no. I will work on a figuring out a system today.

Really, how many times do I have to jump through theses hoops to get the little bit of medicine that takes the edge off? I am tired of having to prove that I am legitametely in pain. I can't fight the pain, the fainting, and put up the front that everythings ok, and have to fight this too. This is too much. It is just tearing me up.

Parents- what do you do in these situations? If you felt your child might be overmedicated?

I can't do this anytmore. I am scared. I am trying to make it to an iv on wednesday- thats pretty much my only hope.

Pain free days,
sailingm

As a parent I would never ever remove my child's medication without first speaking with her doctor. Of course as she is 20 now it's not even a question. She makes her own medical desicions (sometimes unwisely) and I abide by them.

That said, I must say that I feel awful for you. I know it's terrible not to have access to medication (expecially pain meds) that would make you feel better. It's torture! At this point you should not have to prove anything. You are in pain...your family should simply believe that.

Sending hugs...hang in there!

Sailing,
i'm going to send a PM.
mgb

Hi All,

Thanks for the replies.

I am 3O and have been making my own medical descisions for years. The drawback to having parents who are physicians is that they sometimes overrule other doctors. I would understand it completely if I were abusing the medication, but I wasn't. however, that didn't matter and she took the meds. I have never hidden anything medical from my parents or my doctors. I think Mom is one of those people who needs an explanation for the fainting. Medication is an easy target, therefore it must be the problem. In the nearly three years since I have had the fainting episodes, I have gone off all medications at least 5 times. The result was the same, no significant change in fainting.

I wrote out a sort of contract today- one that would allow my parents to keep the meds and I would ask for them when needed. This didn't go over very well. I did suggest a taper off zanaflex, which was fine. But then, I was told that the contract was only good for three days. After that, she wanted me off everything.
Here is what i normally take during a bad migraine:
Pristiq 1OOmg
Tylenol 3 as needed- limit to 4 a day (usually take only 3}
Klonopin 1mg- three times a day as needed. I rarely take that many.
Benedryl 75 mg-
Zanaflex 12 mg at bedtime

My Proposed changes-
Tylenol 3- as needed limit of 2 a day
Klonopin 1mg as needed- limit to 2 a day
Benedryl 5O mg- limit 1 dose a day
Zanaflex 8 mg, tapering to 6, 4, then 2 over five days.

Mom's changes-
Tylenol 3- 1 a day
Klonopin 1 mg- 1 a day as needed
Benedryl 5Omg- 1 dose a day
zanaflex 4mg-
Off everything by Monday.

She finally agreed with her changes. However, she did tell me not to tell Dad because it would "upset him". I will tell him anyway simply because I feel he needs to know what is going on.

I am really worn out now. Every other time I have done this, I have been able to understand the purpose and see the light at the end of the tunnel. Right now, I just feel stuck. I basically need to do this to prove to my mother that there is very little relation between medsand fainting. Also, I am and have been in a world of pain for a week. I have an IV Wednesday, I hope it will help. But the stress of getting off everything in a short period of time is not helping the headache. I will try to stick it out an see what happens. But eventually we are going to have to figure out something that gives me some quality of life, without messing with the fainting.

what on earth am I supposed to do?

Pain free days,
sailingm

i'm shaking my head.

Sorry to hear about your Mom cutting you off from your meds, even if she an MD. You are right in telling your Dad, remind your Mom that it is considered good practice to get a second opinion!

There is no scientific basis for taking you off the meds, since you have already tried that approach.

Why is it that somebody else always thinks they have a solution for our illnesses. And family members are worse at telling you what you are doing wrong.

My best wishes

Hi All,

Again, thanks for the advice.

I am going to talk to Dad and see if it is possible to broker some reasonable compromise.

I guess what bothers me the most is the fact that she didn't really ask me about it. She just told me I was on too much and took them. If I had been asked I would have complied and I wouldn't be this upset. It is just one more thing that I can't control- I can't control the headaches, the symptoms, the fainting. I can to some degree take the edge off.

Even when i asked about getting the medicine if I needed it, I was basically told "no, that's not going to happen."

I have no clue what to do. I know that the headache will get worse over the next few days. No, tylenol3 wasn't helping as much, but it did take the edge off. I am really stuck between a rock and a hard place. I will get yelled out if I control the pain. The alternative is pure torture till the IV coupled with very little sleeo. I am damned if I do and damned if I don't.

I am scared and tired and this hoop is too high to jump through. Any ideas?

Pain free days,
sailing

What do you think your Dad will say or do? Your Mom is frustrated, but she is not handling her frustrations in an appropriate manner. You are an adult, and you should handle your own medications. But you are living under their roof, and you are subject to their control in your life.

Since you are on disability, have you thought about the options available to you to live independently? Then you can make your own decisions regarding your medical care. I believe you could get direct services, to help you live independently.

Cheryl

The difficulty here is that while you are 30 years old you are still living with and dependent on your parents, most likely due to your disability. While you could probably call the pharmacy to try to get refills, or go to the ER, that would likely lead to an even bigger blow up at home. Your father or your doctor may be willing to intervene on the logic that you have gone cold turkey several times and it has not cured the fainting or headaches, ruling out MOH. Unless you are willing and able to live on your own, which does not sound to be the case, you will need to resolve this with your parents.

Given that your mother is also not at her best due to back pain, she may not be thinking as clearly as she should. She may be thinking if "I can tough out the pain, so can she." Having had some really bad back pain, I can say it's not any where near the same as having the pain in your head though.

"Do not start or stop any medicine without doctor or pharmacist approval." http://www.webmd.com/drugs/drug-14706-Zanaflex+Oral.aspx?drugid=14706&drugname=Zanaflex+Oral&source=1

I know your mother is A doctor, but she is not YOUR doctor. Without your physician's approval, I'd be throwing this statement at my mother with firm, but polite insistence.



______________________________________________________________________________

Forgive the longer quite, but also:

"How should this medicine be used?

Tizanidine comes as a tablet and a capsule to take by mouth. It is usually taken consistently either always with or always without food two or three times a day. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Take tizanidine exactly as directed. Do not take more or less of it or take it more often than prescribed by your doctor.

Tizanidine capsules may be opened and sprinkled on soft foods such as applesauce. Talk to your doctor before opening the capsules because the effects of the medication when used in this manner may be different than when swallowing the capsule whole.

The medication in the capsule is absorbed differently by the body than the medication in the tablet, so one product cannot be substituted for the other. Each time you have your prescription filled, look at the tablets or capsules in the bottle and make sure that you have received the right product. If you think you received the wrong medication, talk to your doctor or pharmacist right away.

Your doctor will probably start you on a low dose of tizanidine and gradually increase your dose, depending on your response to this medication.

Do not stop taking tizanidine without talking to your doctor. If you suddenly stop taking tizanidine, your heart may beat faster and you may have increased blood pressure or tightness in your muscles. Your doctor will probably decrease your dose gradually."

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000106

This source is Pub Med, which the medical community uses for up to date information on medications.

_________________________________________________________________________________

If your mother at this point continued to require the quick taper, I'd relent, but with the warning that her actions can and will be reported to the state Board of Health/Medicine


Yes, it's a rather extreme approach, but if I were in your shoes, I'd be worried about your mother's ability to treat her patients safely, considering her requirements for you.


I hope that this will help you, and not add emotional anguish on top of the physical issues.

Triptans are not working for you, or you can't take them? have you tried them at the same time with T3?

Risa

Hi All,

Again, thanks for the advice.

I normally make my own medical descisions- have since this whole thing began. I was at boarding school, then away at college for four years, lived at home for a semester while beginning to pursue a masters in education, then I lived with a roommate and was pretty independent for two years. I moved back home about 7 months ago due to the medical problems. I would like to live on my own or with another roommate, but I am not there yet. This does make things tricky. I am an adult, but to parents you are always their child.

Furthermore, although Mom knows that the fainting is caused by a complicated autonomic disorder, I have noticed that she wants to explain every event. This drives me crazy as I have given that up long ago. I have told her directly not to read too much into the fainting- meaning, I can faint while sitting up, walking, standing, doing anything.

I spoke to Dad about the medication situation and he said he would speak to Mom. When I went down a little while ago to ask for a dose of Klonopin and my nightly zanaflex- Mom got them, no problem. No fights just, ask and recieve. I don't think she denies that I need medication. I think she noticed that I overmedicated once or twice last week and wanted to stop that. I will say that I have a much clearer head than I have had in the past week or so.

I very much doubt that I will be off everything in three days- that is not realistic for anyone. Believe me, if she tried to stop the zanaflex or klonopin abrubtly, I would be the first to throw the literature her way. No, she is not my doctor. I hate the interference and have made that abundantly clear. But there are no good or easy answers here. I will notify my neuro of some of the changes mon. I will get through this one. And this will not be the case forever.

Triptans worked briefly for me, but they do not work well at all. The only thing that breaks a bad one is IV Depakan, which i am getting on Wednesday.

I really appreciate all the advice and help. Not sure what I would do without y'all.

Pain free days,
sailingm


I am beginning to think that going down slowly might not be a terrible idesa. It will let us know for sure what role, if any, is played by medicine in the fainting thing.

As a parent with an adult child with migraines I do understand how she needs an explanation of what is going on with her daughter. We as parents feel responsible and want to fix any problems our children encounter! However, your mom is your mom and not your doctor. What you might want to consider is having a third party - that both you and your mom trust to sit down with your mom and explain that she cannot take your medication away from you.

I am a medical advocate for a friend who juggles several medical conditions. I go to all her doctor appointments and also help her manage her medications. Her mother believes strongly in herbal meds and is always trying to get my friend to take the newest "cure" for what ails her daughter. These herbs can react with the many prescription meds that my friend has to take. It is my job to talk to her mom when she drops off yet another brown bottle of an herbal remedy. Sometimes a third party can help in a situation like yours.......just an thought..........Leslie

Hi SM,

So I have basilar/confusional migraines, and fainting caused by these migraines is listed as a symptoms, and my neurologist tells me I have this symptom. However, if I take my migraine meds as prescibed (including pain meds), I rarely ever actually faint.

My neurologist told me this.

Angel

SM,

You sound to have a very rational and mature approach to this. In the end that attitude should work well in your favor in dealing with your parents. (yes, we do tend to view our adult children as larger versions of their younger selves.)

Good luck!

I can see how terrifying and frustrating it must be to see a daughter who faints, especially, when you are a mother who is a MD who can't help her. On top of it all, you yourself are in a lot of pain.

She is probably right in getting you to go off of these pain meds, and I say this because I just had to face the facts that the pain killers were making matters worse for me and had to go through my own withdrawl to feel better.

I will slip in here that yes, I agree with the others, that she is not your doctor, and is going about it wrong, but the woman does care deeply. Good thing your father is in there. (poor man). I feel for you all in this rough time.

Pulling back on pain meds will be a difficult thing for a few days, or a week, but you will survive, as you have survived thus far. When you stabilize you will feel better and will learn something valuable about dealing with your meds. For myself I rely on triptans and not painkillers and by taking the pain without the painkillers I found out that the migraines will only last a few hours instead of all day and into the next.

It''s scarey but see what happens. Go see your doctor, talk to your mother, listen to yourself. All the best to you.

Thanks for the update, and I'm glad you're doing ok. I didn't want to be seen as the Wicked Witch of the (Mid-) West, but I know how dangerous it is to abruptly stop some of these meds. Glad that the rapid taper/medication holiday has been reduced/taken off the table. I also really glad you plan to call your neuro on Monday.

Please take care of yourself.

(((((Hugs)))))

I am really sorry you are going through this SM......what your mom is doing to you, thinking she helping does not feel right and feels like quite the injustice to you.

I hope there is a solution to this issue soon. I would certainly let my prescribing Dr. know that your mother, Dr. or not, is making her own dosing decisions for you......to the point of taking away the meds.

Much support from me to you.

Hi All,

I am not sure how I would get through this without your help and support.

I understand that in both the physician and the mother in her want to stop this- it can't be easy to see your child fall without explanation day after day. So I understand her what she is trying to do. But she is not my doctor.

Yes, pulling back on the pain meds has been hard, but I think it might have been the right thing to do here. If nothing else we have eliminated any possibility that the pain medication caused the fainting. And it might work better. I take 1-2 Tylenol 3 a day, rather than four. This is probably a good thing. As for the zanaflex, we are not stopping that. I am taking 2 4 mg tablets a night. I will show her the literature that says not to go off it quickly.

I spoke to my Cardiologist's office today- the one thing she suggested was staying on the klonopin. I'm supposed to take one at night and .5 in the morning and see if it helps. I had been taking it as needed, and we had been going off that one. I know Mom will not like this answer, but I am going to go what the cardio says and if it is still bad in a week, then we will make some changes. Mom had suggested going back on the beta blocker-bystolic and I refused because it made me depressed and didn't help much.

so current plan is to continue backing off on tylenol 3, add 1mg klonopin at night, and stay on zanaflex.
I also have an IV of Depakan tomorrow- so hopefuly that will help the headache.

Pain free days,
sailingm

Thanks for the update sailingmuffin. Good to hear you are in control again.

I have been off of the Tylenol 3 for two and an half weeks now and people are commenting on my color and how well I look lately. I personally am feeling so much better and my mind is clearer.

Remember how well T-3' s used to work?, and I'm betting they don't do that anymore. It's more like a spiral down to something else. Hang in there and keep tapering off. You're better off without them. Time for plan B., whatever that may be.

All the best to you.

I think your mother should step away and let someone treat you who isn't so emotionally involved. Yes, there's the old saying that "mother knows best", but there's also sayings about cutting apron strings.

She is too close to the situation to be objective.

You are not on an ungodly amount of medicine.

It seems to be a control issue to me. Sorry, right now I'm not feeling good things about your Mom. She needs to be working harder at finding the specialist that will find the answers for you and what is causing your fainting spells. Look how long it took Marc!!

I'm sorry muffin and sending you cyberhugs.

Hi,

Paradox, I think you are absolutely right. I think part of it is a control thing- in her mind I'm sure she thinks "If we can control this one variable-medication-maybe she will get better." Yesterday, when she suggested going back on the beta-blocker, I simply said "You are not my doctor." It worked.

Also, being off the the Tylenol 3 has helped. I can think a lot more clearly. No, it wasn't working as well as it should have been. Everyone is saying the same stuff to me- how I look better and am thinking clearly. 2 gives about the same relief as 4 did.

I also spoke to my father about the whole thing. I am pretty sure he spoke to Mom as well. He said "It is a bad idea to have a family member, even an md try to treat another family member." I only remember him breaking this once when my brother and I were in a wreck. He didn't really like the ER dr and he was the head of radiologiy at tjat hospital, I remember that he sort of pushed the dr out of the way and read our x-rays. The only other time I have seen him interfere has been when mom was in septic shock or when I saw a neuro who was an idiot.

So, we will see how the week goes. Its five am here. I have been up with a killer M since 4. IV is tomorrow. Testing first graders at the magnet school this morning. I love volunteering with kids- they're funny and distracting. And they dobn't care if the scorrer faints in the middle of a test. Maybe I should forget secondary ed and work with k-1. i seem to have found an audience who finds it funny.

Hmmmm.. so sorry Sailingmuffin, you still suffer I see.

I wonder how you feel - how you REALLY feel about your mom?
If you don't mind telling, that is.

Risa

I think there's good reasoning behind the notion that doctors shouldn't treat their own families. I think your situation is a good example of why.

Chris