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Ataxia Support Network

Sensitive to drugs


#1

Have found during the last 10 years (out of 20) that I have become very sensitive to drugs for depression and anti-anxiety. Just took a drug test called GeneSight which will tell me what drugs I can take without the side effects I have been having. Has anyone had this test and is anyone else dealing with constant side effect from drugs?


#2

In the past, I’ve had Sertraline recommended by a Neurologist. It did help me get things back into perspective, maybe it was the luck of the draw that I didn’t do much trial and error, and experience any sensitivity/nasty side effect. It can be notoriously difficult to find exactly the right medication that will suit an individual, and it is acknowledged that sometimes the wrong medication can worsen the situation. I hope taking this test makes a big difference, and you find medication that actually does improve matters :slightly_smiling_face: xB


#3

Thanks for replying. I have tried the medication you are taking. Your meds are a generic form of Zoloft. Hope to hear results of test soon.


#4

I also have trouble with many medications. Fortunately, I’m married to a biochemist and he figured out that it was likely an issue with my cytochrome P450 system. The hospital ordered tests for the genes that control those enzymes and we discovered that I am a poor metabolizer of anything that goes through cytochrome P450 enzymes 3A4/5 and 2C19…that’s about 60% of pharmaceuticals. So, if I need a medication that uses those routes (like I do now, propranolol), I have to start with a much lower dose than expected.
A couple years ago when I was waiting a hip replacement, I had to take oxycodone. The usual dose is around 10 mg and I took 2.5 mg. The uninformed doctors told me it was a placebo affect but I knew that it was not…I definitely felt the effects at that incredibly low dose. Now, I’m supposed to take 5 mg propranolol but I’ve had side effects at that dose so I am taking 2.5 mg. No side effects and my heart rate is still improved (I have orthostatic tachycardia or POTS).
So, everyone is an individual. We can’t make assumptions about the right medication or right dose for anyone because our bodies are utterly unique. Trust your own instincts. If a dose feels too high or too low, you may be right! I hope the test helps.


#5

I agree with JVherenow – use the test only as a guideline, listen to your body. I, also, tend to be highly reactive to meds, I’m actually taking gabapentin at a sub-therapeutic dose and getting outstanding results!

Pay attention to what your body tells you, not what the med label says. And in my opinion you should always start VERY LOW and VERY SLOW on any med, increase gradually until you find what works for you rather than jump right into the dose that’s standard. As an example, standard for gabapentin for my issue is 300mg three times a day but I get excellent results taking 100mg in the morning and 200mg at night.

azurelle


#6

Do you think you could rent out your husband for medical advice. The test did give help but my neurologist wants to check with my sleep study doctor who is also a non-practicing psychiatrist. I don’t have deep sleep so wake up in the morning tired. Some of this is my Sporadic Ataxia. I live in Goshen, IN which is not filled with psychiatrists. and I need new leg braces but Medicare is not saying “Yes” yet.


#7

The above reply was for JVHereNow but ModSupport I really appreciated your input. I have found that many of the drugs I have taken come only in capsule and cannot be cut.


#8

You’re funny! Actually, my husband and I are extremely frustrated with how much we have had to research and guide the “experts” at Brigham & Women’s in Boston. When you’re sick, it’s hard to keep up with everything. But if we slack, we end up going down a foolish path. We have to research and then tell the medical professionals what we think. Fortunately, they take us seriously and always follow-up on our leads…which have been the ones that proved fruitful. In addition to sporadic ataxia, I have POTS and small fiber neuropathy and I would not have gotten those diagnoses if we had not found the doctor’s who specialize in those conditions. The one neurologist we saw who didn’t specialize told me it was all in my head. I WISH! Then I could fix it!

I find this reality quite challenging. What happens when we can’t research or for people who aren’t scientists and don’t know how to research (as a start, use scholar.google.com, not regular google)? Here’s hoping that the medical system will get up to speed and soon!


#9

I definitely have major problems with side effects of medications. I seem to be sensitive to what they make the medications with (the fillers and stuff that holds the pills together). I can absolutely take nothing unless it is liquid with no dyes, alcohol or additives. I have only found one medication I can take and it is for anxiety. It’s called Lorazepam Intensol. It is clear and only has Lorazepam and propylene glycol in it.

In addition, I cannot eat many foods. I only eat fish, chicken or grass fed beef with only salt and pepper for seasoning and non- starchy vegetables (steamed with water because cooking oils affect me terribly, especially olive oil). I know I absolutely cannot tolerations dairy, gluten, soy. I would be confined to the bed if I ate those.

I’ve been living this way since diagnosed in 2013.

I have not heard of gene test. Let me know if it helps.

Kind regards,
Piper


#10

Heavens your body is not doing well and you have been avoiding “stuff” since 2003. I have taken the test but have not gone forward with drugs which I can stand. Besides anxiety, I have arthritis in my hands which curl, also have leg braces which are too big, falling apart, and Medicare is not giving me the go ahead to bet new ones which my neurologist feels will really me. I will try to get back to you WHEN I can. As you know everything takes forever.


#11

Okay, thanks. Good luck getting new leg braces soon.

Piper