My EP's reply to my letter

[Heartbroken]

Here is what he has written to me today:

(The only way to see how you do with the medication is to try it, If you don't feel better on it, then we stop it.

If you don't wish to start it, that's ok too.

I am not concerned about any dangerous side effects if you do choose to start it).

My question is should I stay with him? 

 

 

[Pistol]

@Heartbroken - well, he is actually right, trial-and-error IS the only way to go about finding the right treatment. As I had mentioned in a previous response - I too had to try many drugs that I was afraid of taking but I did so in order to define the cause of my POTS. In many cases a doctor is not able to exclude a group of drugs until you try them and can see the results of that drug. He is not pushing you to take the drug - that is good. And in the end he leaves completely up to you whether you want to try it or not - that is also good. He is saying that he does not believe there will be dangerous effects from this drug, so he recommended it after weighing the pros and cons. 

Personally I do not see a reason to not believe in this doctor simply based on the response to your letter. If you feel that he is compassionate, knowledgeable and willing to work WITH you in trying to find a treatment then I personally see no reason to switch. My autonomic specialist is one of the leading specialists and researchers in the field world wide, but even he had to admit that finding treatment is not clean cut, and that we have to try a lot of meds before we can find the right combo. 

If you decide to see him again I would schedule another visit ( or tele visit ), explain that you are not comfortable to take this med and ask for another option. That is how I do it with my doc(s) - I usually leave the office with a plan: "If I do not tolerate this drug what will we try instead?" - this way when I have to stop the drug I can call my doc and he will call in the alternative drug. 

 

[CallieAndToby]

6 hours ago, Heartbroken said:

Here is what he has written to me today:

(The only way to see how you do with the medication is to try it, If you don't feel better on it, then we stop it.

If you don't wish to start it, that's ok too.

I am not concerned about any dangerous side effects if you do choose to start it).

My question is should I stay with him? 

 

 

Has this doctor explained what he's trying to achieve with this medication? I would wonder why it's being prescribed. It's a very strong vasoconstrictor that raises neurepinephrine and blood pressure. I don't know all of the medications you're taking but I'd think he should explain why he's prescribing this. My cardiologist didn't explain anything when putting me on this medication but my old local cardio knew close to nothing about dysautonomia. 

Also, the medication is very expensive and most insurance won't even approve it. If it were cheap and generic maybe it'd be easier to try but it's just super hard to get covered.  

[Heartbroken]

Thank you guys for your replies.

My major problem is my BP which gets high whenever I stand, also my tachy would reach 155BPM. Like wise my Migraine med will interact with Northera as I mentioned in my previous post.

If my BP is already high, why would I take a med makes it higher?

CallieAndToby22,

No he never explained that.

I am taking Atenolol and many other meds for other conditions including Eleteriptan for migraine. He did not take me off of any of them.

I am still not satisfied.

[CallieAndToby]

17 minutes ago, Heartbroken said:

Thank you guys for your replies.

My major problem is my BP which gets high whenever I stand, also my tachy would reach 155BPM. Like wise my Migraine med will interact with Northera as I mentioned in my previous post.

If my BP is already high, why would I take a med makes it higher?

CallieAndToby22,

No he never explained that.

I am taking Atenolol and many other meds for other conditions including Eleteriptan for migraine. He did not take me off of any of them.

I am still not satisfied.

I've taken medication without being given risks and one had a devastating affect on my entire health (immunosuppressant). 

I would definitely want him to go over risks with you and the other things I mentioned until you feel satisfied. 

[Heartbroken]

I have tried many meds since I was diagnosed after waiting for 44 years to get diagnosed. None had worked or I had severe reactions to them. I have Hypothyroid, Hashimoto's, Arthritis, Reactive arthritis, Osteoporosis, EDS, hyper POTS, NMH, migraine, SVT, Atrial Tach, Radiculopathy and some other conditions.

[Guest KiminOrlando]

If it was me, I would reply back that I am concerned about the stroke risk. High/Normal BP, elevated norepinephrine, and wanting to give a med that further elevates these things are concerning. Are they expecting a paradoxical effect or is there some other mechanism that makes this drug work for you? You are not trying to raise your blood pressure. Your blood pressure is ok most of the time, is my understanding. Isn't it dangerous to keep it elevated 80% of the time just to bring it up the other 20%? Does stroke run in your family? It does in mine. Is this a test to see if your norepinephrine receptors are broken? If they aren't properly receiving the norepinephrine, then it won't matter how much you have in your system. If they aren't broken, they will receive the norepinephrine. He didn't specifically answer what happens if too much norepinephrine is released and received into your system. Does he know the answer? I don't, but your doctor should.

Most people don't try a drug and see what happens when their concern is a stroke. It isn't an easy side effect to deal with like dizziness or weight gain. Maybe if you readdress your concerns in that light they would be more receptive to giving you specific answers? Or maybe not. If they can't or won't address your concerns over a stroke, then I would be looking for another doctor, but that is me. You are right to be concerned. Always follow your gut. You have the most to lose here.

[MomtoGiuliana]

I have found that some drs don't really grasp the variety of significant orthostatic changes we experience.  They tend to think POTS=low bp along with the elevated hr on standing.  This is true for some of us, but I also have pretty high bp on standing when I am in a flare.  I would also for that reason be afraid to try any medication that would raise my bp during a flare.  Has this dr seen your orthostatics--were you diagnosed with a TTT?  Can you take some measurements of your bp at home sitting and standing and report these to him?

I do know of at least one member in the past here who suffered a stroke while taking a medication that increased her bp.  I think it is a rational concern.

[Heartbroken]

On 7/6/2021 at 11:40 AM, KiminOrlando said:

If it was me, I would reply back that I am concerned about the stroke risk. High/Normal BP, elevated norepinephrine, and wanting to give a med that further elevates these things are concerning. Are they expecting a paradoxical effect or is there some other mechanism that makes this drug work for you? You are not trying to raise your blood pressure. Your blood pressure is ok most of the time, is my understanding. Isn't it dangerous to keep it elevated 80% of the time just to bring it up the other 20%? Does stroke run in your family? It does in mine. Is this a test to see if your norepinephrine receptors are broken? If they aren't properly receiving the norepinephrine, then it won't matter how much you have in your system. If they aren't broken, they will receive the norepinephrine. He didn't specifically answer what happens if too much norepinephrine is released and received into your system. Does he know the answer? I don't, but your doctor should.

Most people don't try a drug and see what happens when their concern is a stroke. It isn't an easy side effect to deal with like dizziness or weight gain. Maybe if you readdress your concerns in that light they would be more receptive to giving you specific answers? Or maybe not. If they can't or won't address your concerns over a stroke, then I would be looking for another doctor, but that is me. You are right to be concerned. Always follow your gut. You have the most to lose here.

To be honest with you, my EP has so little information about POTS, he is more interested in treating heart rhythm disorders, mostly he does ablation. I have non sustained SVT and  atrial tachycardia. Regarding my norepinephrine receptors, I have no idea. Doctors here never dig that deep with an uncommon syndrome. Thanks for the stroke risk reminder.

[Heartbroken]

@MomtoGiuliana

You are definitely right regarding how those Dr.s have a simple understanding about Dysautonomia. I have been to 19 cardiologists and EPs, none of them were interested in my condition except 2 of them, one in Vandy and one in California.

This EP did not bother to physically examine me, only his nurse listened to my heart quickly. I was diagnosed with a TTT decades a go.  For decades I had a very bad tachy, but in the last 5 years switched to brady because of Hypothyroidism and Hashimoto's, but still getting frequent SVT. Thanks for your reply.

[Heartbroken]

During my visit I asked my EP if he ever heard of taking blood samples in 3 positions. He said NO!

[CallieAndToby]

5 hours ago, Heartbroken said:

MomtoGiuliana,

You are definitely right regarding how those Dr.s have a simple understanding about Dysautonomia. I have been to 19 cardiologists and EPs, none of them were interested in my condition except 2 of them, one in Vandy and one in California.

This EP did not bother to physically examine me, only his nurse listened to my heart quickly. I was diagnosed with a TTT decades a go.  For decades I had a very bad tachy, but in the last 5 years switched to brady because of Hypothyroidism and Hashimoto's, but still getting frequent SVT. Thanks for your reply.

I have seen many EP cardiologists myself and none did any testing on me (A CFS doctor did TTT), I'm unbelievably sick and still no diagnosis for autonomic dysfunction. I do have upcoming appointment at UAB autonomic lab but I got sick at like 17 so it's taken decades!!! My cardiologist did the same thing with Northera "let's see if it works" then got really mad when it didn't. I only mentioned risks because I was put on a cancer medication that is very serious and should only be used for myelofibrosis which is pre leukemia, it is not yet approved for Essential thrombocythemia, the doctor told me all the great things then I got on it and declined and declined and was forced to stay on it, finally it wiped out my WBC and destroyed not only my immune system but my autonomic nervous system which was already in not so good shape. I went from semi healthy to blacking out while supine, dystonic seizures, and still nobody has helped and I'm still young and bed bound. It's weird because after a month on the medication the company sent a book like a massive book detailing side effects and I was way too sick to read. The oncologist ended up dropping me. So that's why I mentioned with this medication, because it does seem so extreme, that the doctor should talk about benefits and risks. I also had years and years of tachycardia.

[Pistol]

7 hours ago, Heartbroken said:

I have been to 19 cardiologists and EPs, none of them were interested in my condition except 2 of them, one in Vandy and one in California.

@Heartbroken- it is possible that the docs want to only look at the symptoms they KNOW, like SVT and atrial tachycardia. They might explain all your symptoms are from that instead of dysautonomia. Having diagnoses that they can treat often overshadows the necessity to deal with POTS. Since your last TTT was so long ago I would ask for another one, if you have worsening symptoms upon standing this test would be appropriate, no matter what the doc thinks. In POTS we develop sinus tachycardia upon standing - SVT or AT during it would not necessarily confirm a dysautonomia diagnosis. So as far as I know if you develop sinus tachycardia they would have to acknowledge POTS. 

[Heartbroken]

17 hours ago, Pistol said:

@Heartbroken- it is possible that the docs want to only look at the symptoms they KNOW, like SVT and atrial tachycardia. They might explain all your symptoms are from that instead of dysautonomia. Having diagnoses that they can treat often overshadows the necessity to deal with POTS. Since your last TTT was so long ago I would ask for another one, if you have worsening symptoms upon standing this test would be appropriate, no matter what the doc thinks. In POTS we develop sinus tachycardia upon standing - SVT or AT during it would not necessarily confirm a dysautonomia diagnosis. So as far as I know if you develop sinus tachycardia they would have to acknowledge POTS. 

I have asked both of my GP and EP to have another TTT, but they both said: Oh well, we know you have had 3 positive TTT s in the past decades a go, there is nothing to be done. I had one TTT overseas, another one in my state and the last one was in Vanderbilt.

[Pistol]

@Heartbroken the fact that you have confirmed POTS and had 3 TTTs probably does not warrant another TTT, the diagnosis has already been made. With all of those diagnoses it WOULD be hard to pin point what is caused from what. EDS and Auto immune disease ( Hashimoto's ) can both be an underlying cause of POTS, but unfortunately both are chronic disorders, otherwise treating those could potentially improve POTS. Reactive Arthritis can also be an underlying cause for POTS, since the newest research found a strong link between auto-inflammation and dysautonomia. Although not directly diagnosed with reactive Arthritis I do have ALL symptoms of it, including general joint pain and swelling (especially in knees), chronic bladder inflammation ( IC ) and elevated ESR. Only recently did my autonomic specialist ( who is involved in studies to prove the link between auto-inflammation and POTS ) start me off-label on hydroxychloroquine and - tada!!! - the joint pain, inflammation, fatigue and many of the POTS symptoms have improved, including tachycardia, BP and low energy !!!!! The rheumatologist had refused it, he wanted me to use steroids, however every time I was on them I flared horribly to the point of hospitalization. But the Plaquenil worked. 

Maybe this information is helpful to you or your doctors since it is possible that treating the underlying inflammation ( that obviously id taking place in your body ) can also potentially improve many of your other symptoms. Before Plaquenil what helped me ( I can't take NSAIDS ) was Turmeric - a known and powerful anti inflammatory substance. 

 

[Heartbroken]

On 7/12/2021 at 4:11 AM, Pistol said:

 

Thanks Pistol for your sincere reply.

I have been walking on the shoulders of giants to be treated for my EDS. My GP who is an internist has no clue. I found only one geneticist in my state, he is booked out for 3 years.

Yes, it is extremely hard for health providers and me to manage my health with all of those diagnoses. I no longer know what symptom belongs to which disease. 

 

[Guest KiminOrlando]

Does EDS run in your family? If not, you would likely be looking at EDS type 3. The reason I ask is that EDS type 3 is not genetic, so a geneticist would be a waste of time and money. It is a clinical diagnosis, typically made by a Rheumatologist, I think. 

To echo @Pistol I also treated my underlying autoimmune disease which helped my POTS. I also used hydroxychloroquine and some other meds. It helped. 

Keep digging.

[Heartbroken]

9 hours ago, KiminOrlando said:

Does EDS run in your family? If not, you would likely be looking at EDS type 3. The reason I ask is that EDS type 3 is not genetic, so a geneticist would be a waste of time and money. It is a clinical diagnosis, typically made by a Rheumatologist, I think. 

To echo @Pistol I also treated my underlying autoimmune disease which helped my POTS. I also used hydroxychloroquine and some other meds. It helped. 

Keep digging.

Kim, Yes it runs in my family, but for some reason (probably aging and developing many other illnesses) I am getting worse and worse. May I ask who treated your underlying autoimmune disease? Thank you.

[Guest KiminOrlando]

I went to the Medical University of South Carolina (MUSC) in Charleston. I highly recommend some university hospitals. University of Alabama at Birmingham (UAB) is high on my list right now. My POTS doctor at MUSC has stopped seeing patients so I am in the market for a new group. UAB is at the top of my list. I started in Rheumatology because I had a positive ANA. Because my doctor does research, not just sees patients, he was up on the latest stuff published. He saw that I needed more than Rheumatology and got me in with Pulmonology, Cardiology EP (POTS), Endocrine, Neurology, which led to gastro and a neurosurgeon. They have slowly peeled all of this back and found treatments for things, none of them curable. My life is much better now, but it started getting better when I went to a University hospital. I had previously been to a major diagnostic hospital/clinic in Florida and did not get much help. In fact, they denied me a drug that I needed because they thought POTS would be treated by exercise. 

[Heartbroken]

Thanks Kim. Wishing you better health. Appreciate your kind reply.