Question About Dr. Adaraju Treatment.

[Gemma]

Hi I was recently diagnosed with dysautonomia, not sure which type, but doctor said something with my parasympathetic overshooting. He did an ansar test on me and thats how he diagnosed it. For the past 6 month I thought it was just anxiety. I started with the cough 6 month ago, nobody new what it was so was told its a nervous tick. Doctors tried treating me with anxiety meds. I tried laxapro, but didnt tolerate it, then celexa which was ok, but stoped it on my own because want sure what was with me. Then i had tragedy happen in my family and my primary put me on xanax so I wouldnt crash. Since all this meds i started feeling worse. However i must add that 6 month ago i was also diagnosed with mono. So to make it short, i was on xanax for 2 month then stopped for a month and felt better actually, but then something happened and i started having weird pains in my body and became very fatigue especially towards evening. Also my pulse was going up, which i thought was just stress before the finals. My cardio referred me to Dr. Adaraju in bristol pa. He did ansar test for me and gave me coreg, midodrine, and amitriptolyne. I did search these drugs and some people say they were given same meds. But then i came across message on this forum about this doctor and the reviews are not very good. Someone posted that he treats all his patients with the same meds. I tied them but have very bad side effects. Called him and asked if maybe i could try something else, but he said no, and that he cured lots of patients with this combo of drugs. So my question is was anyone here treated by this drugs and if yes what was the outcome. Thanks a lot.

[MomtoGiuliana]

Gemma--I see you responded to this past discussion might be of interest regarding the ansar test:

http://forums.dinet.org/index.php?/topic/20676-low-baroreceptor-reflexansar-test/?hl=ansar

The Tilt Table Test, as noted in that discussion, is the standard test for most types of dysautonomia.

Dysautonomia is a broad diagnosis and everyone is different in how it manifests itself. It seems what works for one person does not necessarily for another, based on what we see on this forum. So it could take some trial and error for your and your doctor to find what works best for you.

Midodrine is a common drug used to raise bp and is fairly commonly prescribed from what I have seen. I am not personally familiar with the other 2 drugs as a treatment for dysautonomia.

[Gemma]

Thanks for the reply. Yes he gave me Coreg wich lowers HR but also lowers BP and because my BP is already in low 100s or 90s systolic he gave me midodrine to increase it. I saw many posts that say thats a standard treatment, but I can understand the purpose of lowering my HR with one drug and at the same time increasing it with another. But I am not a doctor and hope he knows better why he is doing this.

[MomtoGiuliana]

My doctor did consider giving me Midodrine along w a beta blocker for similar reason, many yrs ago. I think the idea is that the dr is trying to get the hr down but not blood pressure.

[Gemma]

I dont know what to do. I will probably just start ssri for now as I see many people benefit from them and will seek second opinion from another doctor. I have already scheduled appointment for next month with a neuro doctor who specializes in dysautonomia. I just want to start taking something, but different doctors keep on telling me different things.

[MomtoGiuliana]

I'm sorry your situation is so frustrating right now. It is definitely a good idea to see a specialist.

[looneymom]

Go ahead and give your medications a try. It sounds like this is just a starting point and your doctor is trying medications that have helped other people with this same problem. Everyone has to start somewhere. My son is on the midodrine and he has to have it. My son started a new medication this morning to see if it would help with other symptoms. Whenever this situation arises. I always monitor his blood pressure and observe him carefully. Sometimes it takes awhile for medications to start working, so don't get discouraged. Be sure to give your doctor weekly updates but don't hesitate to call him if you feel the symptom is unbearable. I've seen this happen before and called the doctor. Hang in there. If you want some relief with your symptoms, you gotta start somewhere. Many of us on this forum are in the same boat.

[Gemma]

I am giving it a try. But after speaking with my physician we decided to start with coreg and midodrine and then add amitriptolyne. He says that by starting all 3 of them at the same time, I will not know what causes the side effect reaction. So yestarday and today i just took beta blocker and midodrine. Will post later how this treatment goes. Ohh, I so hope it helps, but feel that it will be a long road, since I am so sensitive to all the drugs. How much midodrine your son takes? And did he tried fludocortisone. I liked that one better, but the side effect was increased anxiety, gave me panick attacks. Doctor recomended take it at night, but I am afraid my bp will go up when I go to sleep. That was my regular cardio doctor, but the other one that I am seeing now, says that fludocortisone is not good for me, because of anxiety. However, i saw on this forum that many people are taking it. I feel like midodrine is not doing much for me, just giving unplesent side effects, but flurine actually cleared my head and I was able to stand without bouncing effect and also was easier to breath. Maybe i will ask e new doc if I can take it at night instead of midodrine.

[looneymom]

First of all, I want to let you know my son has been on his medications for over a year and a half. Our cardiologist is in the process of making changes with medications because my son has not made much progress with the POTS condition. My son takes midodrine 40 mg three times a day. About a month ago our cardiologist tried to cut my son's dosage in half to see if this would provide relief with some of his other symptoms. No relief given and my son's blood pressure dropped lower. So my son is back on his usual dosage.

As for florinif, my son takes 2 mg in the morning and this dosage was also cut in half this last week. My son's blood pressure is staying up so far. Our doctor is trying to figure out if one of these medications is making my son's POTS condition worse. Trying to find the right combination of medication to treat POTS can be frustrating. When you respond well to a medication be sure to let your doctor know. Florinif is supposed to increase blood volume. There was a really good post about this medication a few days ago. You might want to go back and read those responses.

When you start too many new medications at once, it is hard to tell what's working and what's causing side effects. It's best if you can start on no more than two at a time. Florinif and midodrine are the most common medications POTS patients are started on together. Be sure to let your doctor know about side effects. He can determine which one is causing what. Another thing, you doctor may be trying to figure out is what type of POTS you have. This can be tricky because some medications cannot be used with Hyperadrenal POTS. It sounds like your doctor is trying to work with you. Hang in there and keep asking questions.

[Gemma]

Thank you looneymom. I think i have overshoot of parasympathetic. He just said something with parasympathetic that needs to be regulated. Its hard for me to talk to him, he doesnt give many details. I dont even know if i have pots or what, just said we need to balance it back. I really want to trust this guy, but often have doubts in him. I told him about my side effects, but he didnt pay much attantion to them and said to continue, because i need to give my body time to adjust. I told him that when i took all of the meds he gve me plus xanax, i felt like passing out, and it says on coreg that its a serious side effect and contact your doctor, welli did and he said, its ok, ou not gonna pass out. I said but i called the ambulance because was feeling so bad, he still said its fine, give it time. So i called my primary, and he said that he doesnt like the drugs he gave me at all, just maybe midodrine, but also said if i want to try this treatment then maybe start with coreg to see how i feel and then another ones. I started coreg 3.125 once a day, even though he said 2 times a day, and midodrine 2.5 two times. Today, i only slightly felt lighheaded, i think its due to coreg. Also my shoulders are so sore, not sure if from midodrine or coreg, but think coreg, because i did take midodrine before by itself and didnt have this pain. Its like all over my shoulders radiating towards the neck, feels like muscle spasms. I will give this drugs a little more time. But i think 2.5 midodrine doesnt do any thing for me and I would prefer flurine. What symptoms your son has? Did you find a cardiologist you specializes in this area. I have appointment next month with neuro doc in NY who specializes in this area. I dont know where you located but i know in NY there are like 7 docs who specialize in this area.

[looneymom]

Gemma,

My son sees a cardiologist for right now. He has a constant headache, back pain, scalp pain, and hypersensitive to touch. I monitor his blood pressure constantly. The new medication, I tried with him yesterday caused an allergic reaction in his body. So I called his doctor this morning to let him know. My son also has sleep issues. Our cardiologist just went to a huge cardo meeting in May and was able to discuss my son's case with other well known pots doctors. Because of his age, I have not been able to get him into studies. However, since our cardiologist has been able to discuss his case, he has gotten some other things to check on. My son has symptoms that are not normally seen in his age group for pots. He was a 11 when diagnoised and just turned 13 in April. He is tall for his age at least 5'10" or more and weighs around 180lbs. He is basically a kid in an adult body but you can't use some of the adult medications for him. If you would like to read about our journey, I started a blog called survivingpots.com. It tells our story. I'm glad to hear you live in NY. There are several good doctors there. Hopefully you will find one that you are comfortable with. Don't give up on finding a doctor who will work for you. I email my doctor weekly with blood pressure and heart readings. I also have a nurse line number to call. This is very helpful. Glad that you can tell some difference with your medication. It really does take awhile to see if some medications will work. However, because my son has been on some of his for so long, our cardiologist has decided it time for a different plan of action. If you would like to p/m me feel free to any time.