Cardiologist Appt For Hyper Pots

[kitt]

Yesterday I had an appt with my cardiologist after getting my catecholamine tests back with high NE levels.

The cardiologist began telling me that he thinks denervation of sympathetic nerves in dysautonomia (like the denervation done for patients with high blood pressure that can’t be controlled with medication) is not far in the future. Amazing! A surgery that would stop the excessive sympathoexcitatory responses in hyper pots.

In talking, I mentioned how fortunate I felt to have a doctor who understood dysautonomia and he told me, (hadn’t before, this is a very humble doctor) that one of his mentors at Northwestern had been a doctor/researcher who does a great deal of research on dysautonomia. So he learned from someone who is in dysautonomia research.

When I came home, I looked him up, and he has published or is a co-publisher of 145 articles, a number of them on dysautonomia. Here’s a link to his publications. http://www.ncbi.nlm.nih.gov/pubmed?cmd=PureSearch&db=pubmed&term=Goldberger+JJ+%5Bau%5D

In talking about how to start treatment (since I can’t take BB’s) I mentioned Clonodine. He said it wouldn’t have been his first thought, but said, “I have Clonodine here. Wait, and we’ll try it and see how it works”) A nurse came in and did orthostatic measurements laying down, sitting and standing. I then took 2.5 (half of a Clondodine tablet)…Sat for half an hour. She came back and redid the orthostatic measurements and then I stood for a half hour while my heart rate was monitored by a machine.

It was amazing. It started at about 93 and would go up to 105 and then self-correct and go back down to the low 90’s and start to slowly go up to a little over a hundred and then self-correct again…and on and on for half an hour standing.

The doctor was happy with that, so I’m starting at half a tab of Clonodine once a day.

Feel very fortunate! to have a knowledgeable cardiologist but he’s a very busy doctor and surgeon. His schedule is busy, but time with him is never rushed, although getting an appointment requires a lot of wait time.

[HopeSprings]

Oh my God! On the spot treatment that works?? Amazing. Please let us know how it goes, like any side effects or if it helps any other symptoms besides heart rate. Can you explain what this means (I don't get it):

The cardiologist began telling me that he thinks denervation of sympathetic nerves in dysautonomia (like the denervation done for patients with high blood pressure that can’t be controlled with medication) is not far in the future. Amazing! A surgery that would stop the excessive sympathoexcitatory responses in hyper pots.

[kitt]

Naomi,

It means ablating the sympathetic nerves where they originate, at the ganglia. Here's a good link http://en.wikipedia.org/wiki/Sympathetic_ganglion

As he said, this procedure is not yet an option for dysautonomia, but he feels it is very close.

Here's a link to how they ablate sympathetic nerves for some cases of high bp that are impossible to treat with drugs in The New England Journal of Medicine. Not the same, but a similar procedure. http://www.nejm.org/doi/full/10.1056/NEJMc0904179

As to the dosage of Clonodine, it's half of one mg., not half of 5 mg. It was really cool to see my heart rate self correct like that! It means I'll be able to stand longer. Hope I tolerate it and it continues to work.

[Chaos]

Wow! How exciting! It's always such a great feeling to find a doc who knows something about dysautonomia issues and it sounds like you found a gem!

I'm wondering about the denervation thing though. Those of us with the neuropathic form of POTS are thought to have a partial denervation (I thought). In my case, I've been diagnosed with a neuropathic form that also has a hyper component which is felt to be a compensatory reaction to the issues caused by the neuropathy. I'm guessing they'd have to be really careful which nerves they were going to deactivate for the Hyper-POTS folks to make sure they didn't create some other issues?

Trying to make sense of it in my foggy brain.

[kitt]

Chaos, I do feel like I've found a gem.

When he's talking I feel like someone in the s-l-o-w class in school. Because I have a few reasonably bright questions written down, he starts talking a bit (a lot) over my head. He's the opposite of condescending and arrogant. I have to remind him that I have cognitive disfunction because of this.

If you read about the ablation with high blood pressure patients, you can imagine how precise that is! (Read the description in the link I posted.) Good surgeons are comfortable doing surgery though.

This doctor has an incredible bio as far as his education, awards etc.. and he's now in his mid forties, so also very experienced.

He made the comment yesterday, 'I don't like the word POTS, I prefer dysautonomia' I think he means he sees all of us in the same boat with it manifesting differently but not as separate as we may think. He's looking at the big picture. Mentioned he's also board certified as an internist, so that helps me I think. He understands co-existing conditions, mast cells, CFS, etc...

The ablation he's saying is not far off would be very helpful to me with NE over 1400. There's no real way to 'turn that off'. Difficult to sleep, etc...

I'll talk to him about an SSRI which might help, but he wants to try one thing at a time. He did prescribe a sleeping pill, but not sure that will help, as I often have the 'opposite reaction' to drugs like that...Meaning it could well keep me wide awake.

[diamondcut]

Kitt

That is wonderful news you were lucky to find a doctor who cares, and hit pot luck with a drug that helps your symptoms.

Could you tell me as i have seen a few people on the net who are having ganglion blocks for tachy, not BP, did he mention this at all?

Could you pm me who this dr is and where you are based in the US?Many thanks

[kitt]

Diamondcut, I think he was referring to ablating the nerves at the ganglia for excessive sympathoexcitatory responses in hyper pots, the sympathoexcitatory cause of very high NE. Mine is over 1400.

He seemed to know a great deal about it, so it could be for other reasons as well. He spoke to me but I had difficulty following all that he said.

I know surgeons have done sinus ablation for IST dysautonomia.

[diamondcut]

Thanks Kitt.

I have asked my pots dr about ablation and generally the opinions on here too is that they are not helpful for POTs, just IST

Here is a link to what i am talking about for tachy in POTs patients, it seems that possibly we are getting closer to surgical routes that dont have such bad side effects as drugs.

Has anyone else seen this link before?

http://www.medhelp.org/posts/Heart-Rhythm/Anyone-had-a-nerve-block-for-Tachycardia/show/1686184

[Elegiamore]

"ablating the nerves at the ganglia for excessive sympathoexcitatory responses in hyper pots" - I've researched this extensively, as a bp of 250/140 is not unusual for me, unfortunately.

This won't work for Hyper-Pots BECAUSE...they believe that the procedure itself will affect the body's ability to control BLOOD VOLUME! They are already telling those that have had this ablation to be super-careful the rest of their life to stay over-hydrated. Something most of us can't do.

So you ablate yourself and then have trouble maintaining blood volume - your NE goes up and you are right back where you started! A shame.

And then there are many of us who cannot handle being put under or even local to have the surgery done. The main cause of death and morbidity in doing this ablation is that patients had coronary spasms and heart attacks when they pulled the device's sheath OUT. Way too dangerous for many/most (?) hyper-POTS patients.

OTOH, clonidine has saved my life. Wearing the patches instead of using the pills gives you uniform release and control, when it works for hyper-POTS patients.

[kitt]

Elieg, I think you misunderstood my post.

You're talking about two different surgeries. You mentioned your BP, and how high it is and you researched this because of your high blood pressure. The ablation surgery you're referring to is described here in the New England Journal of Medicine. It's become a common procedure for people with high BP who DO NOT respond to medication.

. http://www.nejm.org/...56/NEJMc0904179

This procedure of ablation has nothing to do with what I was speaking about with hyper-pots. There is NO ONE yet doing ablation surgery for hyper pots YET. The surgery would not be done for people with high BP but for people like me who have very very HIGH levels OF NE. Mine is over 1400. My cardiologist, also board certified in nuclear medicine, and internal medicine explainedd that 'ablating the nerves at the ganglia for excessive sympathoexcitatory responses in hyper pots" Is a VERY real option in the near future. But it has NOT been tried yet.

This cardiologist is very knowledgeable about dysautonomia. He didn't tell me that.

I mentioned that is was 'heartbreaking' to read on the internet how many patients were unable to get help from cardiologists and other doctors, and were being dismissed as 'anxious' and worse. He then explained to me that when he was studying at Northwestern U. his mentor was a dysautonomia researcher. He told me his name, and I mentioned it another post, as well as a link to his approx 165 published research papers, many of which were on dysautonomia.

So as I said, I'm not sure what you researched in terms of ablations done for dysautomia, but the one he spoke of is NOT being done yet. WIth an NE of over 1400 like I have it is very difficult to sleep at night for more than an hour or two at a time because

catecholamines are at their highest in the wee hours of the morning.

Perhaps you read about an ablation being done for IST, another form of dyautonomia, (again, having nothing to do with high NE). This ablation surgery for IST is common, and often has outstanding and permanent results. Have read of many, many cases being done at Baylor in Texas.

[issie]

There have been many discussions on ablation in dysautonomia. Most of what I remember warned against sinus node ablation for us POTS people. In fact, from what I remember it has caused more problems then it has helped with those that have done it. I do know that some have recently done this and I don't remember what their results were.

As for high NE levels ----there appears to be a connection to high NE and Mast Cell activation disorders. It has been suggested that the mast cells themselves can cause a release of NE ----can't remember the specifics about it right this minute. But, I was surprised to learn that there could be a very real connection to MCAS and high NE levels. My neuro doc at Mayo is trying a good many of us HyperPOTS people on a MCAS cocktail to see if it helps with the NE release and our hyper responses. I am finding that it is being helpful and beneficial. I find that I can stand for longer times and am being able to handle stressful situations better without a provoke of POTS symptoms.

The high NE levels can also be a compensatory reaction to increase blood flow and volume as was stated above.

So, first off ---you must determine the cause of the high NE levels before you go off and treat something and that not be the cause/or reason for the problem. I have no doubt, kitt, that you have found a very good cardio doc. and it will be so much better for you to have a doctor that is familiar with dysautonomia ----but, even having the subsets broken out with POTS is so new that I don't think the science has advanced far enough to know the cause of our high NE levels=== yet. I think the Mayo docs are thinking that there is a very real connection to mast cell issues and also with a good many of us Ehlers Danlos. So, what came first and whose on first -----if you know what I mean.

Issie

[kitt]

Issie, the cardiologist I’m seeing is very familiar with all forms of dysautonomia. He studied dysautonomia and worked in dysautonomia research with J Goldberg and follows dysautonomia research very closely. He has treated IST (another form of dysautonomia) patients as well as pots patients.

Google J. Goldberg, and you’ll see he is an active researcher who has published many papers on dysautonomia! This is whom my cardio studied with at Northwestern and continues to stay in contact with.

The cardiologist I'm working with knows about my mca issues, and in fact will be working with the mastocytosis doctor I'll be seeing specifically to determine if I do in fact have mastocytosis and/or mca as has been suggested by my immunologist among other doctors.

The ablation the cardio I'm seeing is talking about is not ‘heart surgery’ and most importantly it's not something he's saying he or anyone else is currently doing. He was very clear that he thinks the science on this is very near the point where this kind of denervation is very real and may well be helpful for someone with NE levels as extreme as mine. My high NE levels keep me from sleeping more than one or maybe two hours at a time.

This is a serious issue, and he’s very concerned about my trying to live/function with this severe sleep issue caused by the extreme high NE. So if and when denervation becomes a valid avenue for augmenting an overactive sympathetic nervous system and lowering NE he is interested in that, as am I. Again, this surgery is currently not being done anywhere.

So it’s sleep that I’m talking about as my very serious issue with high NE. Ironically, I have a calm demeanor, and don’t seem to have a problem with stress. But sleep is something extremely important to us all, and not getting it is incredibly outrageously difficult.

Issie, let me address the rest of your post in another as this is getting long. So a 2 part response, smiles.

[kitt]

Issie, you mentioned sinus node ablation in pots.

Nobody that I'm aware of is recommending sinus node ablation for Pots? (Although nothing would surprise me.) They're using sinus ablation for IST, (inappropriate sinus tachycardia), another form of dysautonomia and sinus ablation has been very helpful for many people suffering with IST. I know Baylor in Texas has had excellent results. Not on pots but on patients with IST dysautonomia.

So I agree with you Issie...Can't imagine a pots patient going through a sinus ablation for pots?

MANY people with pots are misdiagnosed with IST when they in fact have pots and IST patients are dx with pots when they in fact have IST. On my very first visit to this cardio, he said he needed to rule out IST, (even though I had already gotten a POTS dx). So as I'm sure many here know, these two dx's are often confused and misdiagnosed as one rather than the other.

You talked about mca and NE levels and this is a fascinating topic. I'd like to see articles about NE levels and mca. I don't doubt there is a connection between mast cells and NE, but if you or anyone happens to find an article about it, please share the link.

As you know, Mayo clearly states that the number of hyper pots patients compose 30-60 percent of total pots patients. Only 5 to 10% of that 30-60 percent does Mayo say have NE levels of 1000 to 2000 and it's that same small subgroup Mayo suspects have mca issues. (A very small percentage.)

So it's interesting that they're looking at mca in hyper pots patients with NE levels of 600-999 such as yours, I think they've made a clear distinction of the very small number of hyper patients with high NE and the relationship to mca. Nothing in their publication mentions mca in hyper pots patients with NE under 1000.

So it's very interesting that (even though they're not willing to publish it) Mayo is using mca cocktails for the hyper patients with NE levels between 600 and 999. And you feel it's helping. That's a good thing!

I think part of your point is that there are so very few patients with NE levels of 1000 to 2000, (the patients they acknowledge have probable mca,) they're perhaps seeing how low that level might really be. This makes sense in that they should keep moving the bar and see what results patients have, since this science is all relatively new, and these subsets are still small. Makes a lot of sense.

My concern is that I want to be tested for mca and mastocytosis before experimenting with addional drugs. I want to be tested for not only tryptase and plasma histamine but other tests to check for masto and mca by a mastocytosis specialist. I have a strong history of illnesses with a huge mast cell connection, and have been told by an immunologist she thinks I have masto, so it’s important for me to get a full work up. Again, my cardiologist will be working hand in hand with the masto doc on this. I live in a big city and there's only one masto specialist, so I know that it's not an easy thing to find. I get that.

I think we're all trying to make sense of things, and as a group you have done an amazing job. (I'm new here, so can't take credit.) I have found amazing information on Dinet, and am very grateful to everyone who has been plugging away trying to make sense of this. Issie along with many others have been an amazing resource, and I am very grateful for this forum, and all the work that everyone has put into it. This forum has been a goldmine for me in terms of not just understanding facts, but sharing the oddest of symptoms that so many of us share, and knowing I'm not alone. It’s been a comfort to me and I thank you.

As far as treatment and diagnostics, I've always tried to go to the best doctors I can, and respect the fact that the good ones actually do know what they're doing. None of has a medical degree, so the best we can do is see the best docs we can, and run the other way if they don't understand or respect this illness.

Issie, I have a very longstanding relationship with Mayo, in two different Mayo clinics and a variety of specialists. I think you’re in very good hands at Mayo. I feel I’m in excellent hands here, or I’d drive the less than 2 hours to a Mayo clinic very near me. I don’t think I could do better at Mayo than I’m doing with this doctor. I feel working with him and now the masto is my best option.

I think I’ve addressed your concern/question that I find a doctor ‘that is familiar with dysautonoma’ Check! And I agree with you about subsets, and science, and much of this is still being formulated. All any of can do is try and assemble the best ‘team’ of experts who are willing to work together, and to continue to share with each other what we’re finding out!

Godspeed to the researchers and in the meantime may we all have a better day tomorrow than we had today.