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Desperate for some advice


danelle
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Hi, most of you know that i am a pots pt, and that my 17 yr old son was recently dx as well. I have found a dr in town that is familiar with pots-a cardiologist. he is wonderful and is doing more research and talks to dr grubb frequently about both of us. my son is having a majjorly hard time right now, now only with the pots symptoms but also the anxiety that goes with it. right now, he is on toprol xl, he was on 12.5 but was increased to 12.5 2 times a day just last week. it seems to be helping get his bp and hr down. he is also on ativan prn, but in order for it to work, he has to take 1.5mg. he is concerned about his meds and how he can get rid of the anxiety or impending doom feeling. he has also been on zoloft for 4 years due to moderate to severe depression at 50 mg.

anyway, the dr called today and he spoke with dr grubb this am. they want to change his zoloft(which wehave already decreased him to 25mg/d) to celexa. he wants him to continue with the 25mg of zoloft for another week and a half and add celexa 10mg once a day, buspar 5mg 3 x/day-and he wants him to start those today.

my concerns are: 1-taking 2 SSRI's at once for a week and a half even though they are both low doses-i thought that was contraindicated but asked the dr and he said it would be ok.

2-the side effects to celexa and buspar are very scary. I just don't know if I wnat him on all this medication.

3-i realize benzodiazepams-ativan, clonapin(which I am on), xanax are very addictive and I am reluctant to let him take them but at the same time, I know the panic and fear-i want to prevent him from feeling this.

I do respect this dr and did express my concerns, I want to maintain an excellent relationship with him-he is trying very hard to help us and keeping up with dr grubb. WHAT DO I DO???? If it were me, I don't know if I would take it all(I am EXTREMELY sensitive to meds and allergic to many)-why would I give it to my own son??? luckily he tolerates meds better. SOmeone please give me some advice.

ANd to top it off, his prom is tomorrow night/ what if all these meds mess him up?

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Danelle, first let me say my heart goes out to your son. It is probably additionally scary for him to receive the dx because he has watched you struggle to manage with POTS. Also, I am sure it is much worse for you to see your son sick that to be sick yourself. I can certainly understand your concern about all the med changes. While I can't give advice on what you and he should do, I will gladly share my experience. At the onset on POTS I was started on multiple meds at the same time and when I had what I felt were terrible reactions, we never knew which was causing them. so the doctors told me to stay on them and see if my body would adjust over 2 months. I should have stood firm not to do that but I was just too sick and thought they knew best. Now, based on my experience alone, I will not try multiple new meds at one time.

I have not tried SSRIs so I can't speak to them except to say I know others here have posted that they often have side effects while ramping up to the full dosage. It does seem a little strange to be on 2 at once.

Regarding your son's anxiety, do you think stimulation is a contributing factor? I didn't learn this about myself until a year after onset. But, any stimulation worsens my condition for which I take small doses of Ativan. I am imagining his prom with all the noise, music, and just general "busyiness". Maybe he can make sure there is a place he can slip away to if/when he starts to feel bad. Just quieting the ANS can help in situation like this.

I know you are faced with a difficult decision and it is great that you have a doctor who is working so hard on your behalf but in the end, he doesn't have the experience you have as someone who suffers from POTS. I don't think you should worry about ruining the relationship, especially if all you are contemplating is going slower on introducing new meds. If you are still in question, call him back and tell him what approach YOU would like to take and see if he can support you. I bet he will.

good luck.

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Hi Danelle, Taking the two SSRI's is not a bad thing, it will decrease his withdrawl symptoms from the zoloft and ease his body into accepting the new med. It is a much gentler approach. He's been on Zoloft for four years and if you decreased without introducing the new med, he could have a big crash. Combining the two during the transition should be easier on his system all around. He'll probably still have a bit of a rough time for the first bit as his body adjusts, but not nearly as bad as it could be.

I see that Dr. Grubb was consulted and helped work out what meds to try... that's a very good thing. He is a good doctor to trust. Like Geneva has said, if you are at all concerned, call the doctor and tell him your concerns. Maybe he will adjust the med plan or at least explain it better to you! Laura

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My son was completely agoraphobic before he started on celexa. Now, he seldom has any anxiety and no side effects at all. It's very common to be on two ssri's at the same time. Many people are. It's so BAD to have a sick child. It's just wrong. My heart breaks for any of us with this going on. I would take my son's illnesses on myself in a heartbeat. :) morgan

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Danelle,

Dabbling with new antidepressants/anxiety meds can be a bit scary, but I hope you understand these are all medications that have been around a while and seem to work well for anxiety, which is why he's being put on them in the first place. Combining two antidepressants is some sort of new trend in medicine, and I don't quite know why, but it's fairly common and I wouldn't worry too much about that -- you are right, those are both low doses.

As for side effects, the drug companies are required to list every single effect ever experienced by a person taking a drug. For instance, if Tom is taking drug A, and happens to have a headache while he's taking it, is it from the drug or just a headache from something else? It doesn't matter -- headache still has to be listed as a side effect. Usually the most common side effects will be listed in a separate category, and first. There are often only a few, and they tend to be nausea, fatigue, dizziness and dry mouth. These are bearable and they tend to go away as treatment continues.

I think you need to let your son try what the doctor recommends, and start slow. Maybe he could even take half the recommended dosage the first week of Celexa and Buspar. Use your own (and his) judgment on this.

I am so sorry that both you and your son are dealing with this crappy illness. Lean on each other, though. You'll get by a lot better.

Amy

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Update, Derrick has severe dizziness, nausea, diarrhea, worsening headaches, inability to concentrate since we started these meds-I hope I listed it all??!!. As usual, I am very POTSY today myself-brainfog :rolleyes: Please see my poll. <_<

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My husband had to switch from Zoloft to Effexor XR and he also took a reduced dosage of Zoloft while increasing the Effexor. He really didn't have any problems with the transition other than he would have some gastro problems for the first couple of days when he increased the Effexor. So, we slowed the transition schedule down so that he always increased on a Friday which meant that by Monday everything was settled down. It stretched out the transition by a couple of weeks but it went fairly smooth.

He was also on a higher dosage of Xanax than he is now. Once the transition was complete, his Xanax was reduced to .25mg once or twice a day and he has maintained at that dose for about a year.

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Your son's doctor will want to know if he is having these side effects. I would call the doctor today. You should always feel free to ask his doctor to modify his treatment plan so that you and your son feel comfortable. Remember, it should be a partnership with the doctor.

Karyn

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Celexa and Lexapro both have some pretty tough side effects when starting or stopping. For me, it was profound nausea, problems thinking and I was intensely irritable--I felt like I was going to come out of my skin. That irriation and cognitive problems only lasted a few days and the nausea lasted about two weeks.

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Guest Mary from OH

Danelle,

I may be late to jump in on this. But, try not to worry too much! Taking 2 SSRI's is ok. But, if you are uncomfortable about making too many changes in his meds at one time, take it more slowly. Do the SSRI first. Then after a few days, add the Buspar. That way you can tell how he is doing on the new SSRI and how he tolerates the new med too!

Like someone else said. They HAVE to list EVERY side effect anyone ever had to the medicine. Everyone is different. He may or may not have any. His dosage may need to be increased or decreased. Most side effects tend to go away within the first few days. And, sometimes you have to decide if you don't mind the side efffect as much as you like how much the drug helps you. For example, some drugs cause dry mouth. You can tolerate that. You can drink more, **** on candy etc. It's better than whatever you are taking the drug for.

Also. Danelle. Derrick will pick up on YOUR anxiety and worry for him. It is only human nature. And of course, as his mother, you are going to worry. It is only natural. But, you have to try your best, in front of him, to present a positive outlook and to explain that finding the right medicines is trial and error and that you will help him and the drs. find the right medicines for him. He needs to stay positive and keep a healthy mental outlook on things.

I know this is SO difficult right now for you and your family. Both medically and financially. But, it is so vital for Derrick's health. It has been shown through research that a positive attitude and prayer can improve a person's health. He needs you to be there for him. He is only a child. You can support each other. You can vent here all you want. Try not to do it in front of him and don't "worry" out loud in front of him.

You are an awesome mother who is going through so much right now. I feel blessed to have you as my friend. You are a strong person, even though you don't know it!! Your cardio WILL get to the bottom of things for the both of you!!

Hang in there and know that we're all here for you and holding your hand every step of the way!! You go girl!! Love you!!

:D:D

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I have only very limited experience with meds because my system was always too sensitive. But my vague memory is that the SSRIs take quite some time before they "work" and that there is often a period of getting worse before you feel better.

I always suggest that you get as much information as you can from every source you value then let your heart help you make the decision. POTS aside, Anxiety has lots of treatment options ... we are fortunate that way. In addition to the meds there are non-pharmaceutical options as well.

Goodluck finding what works best for your son. And trust that whatever choice you make it is the right one -- I believe in you.

EM

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