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.

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.

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.

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.

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k&a...Found this info on him for you.

He's a neurologist and a psychiatrist.

http://www.sentara.com/Doctors/Neurologist-Kamal-Chemali-MD/Doctor-ID/1300337

If this isn't disturbing, I don't know what it. While doing an exhaustive search on hyper pots before my appt with cardiologist this article came up.

It's called 'autonomic impairment in borderline personality disorder'

Wow!

http://www.eric.ed.gov:80/ERICWebPortal/search/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=EJ860847&ERICExtSearch_SearchType_0=no&accno=EJ860847

Naomi,

The cardiologist I'm seeing has treating dysautomia before. Even though I already had a pots diagnosis, he did a two week holter monior, (unusual to wear one for more that 24 or 48 hours), en echo, stress echo, a TTT, and after a very negative reaction to 2 different BB"s , and because of his knowledge about other illnesses I have, he suggested he I may have hyper pots with mca.

All of the catecholamines were off, not just the NE. He tested for a pheo and those numbers were normal.

My NE is not 'borderline' so don't understand why he would reorder them, but if he suggested it I would.

I see him tomorrow, and will share what I learn.

Yes, I get this at least once a week. Not 'scratchy' but sore, and my throat feels swollen.

Also thought it was CFS, but it doesn't seem to progress. I always think 'here I go again with swollen glands and being too sick to move for days' but it seems to subside fairly quickly. Don't know what to make of it.

Would never have attributed it to pots if hholmes hadn't mentioned it. Almost a relief to know it's not CFS, but then again perhaps these two are hand in hand with many of us. (hate to refer back to the new Mayo paper Issie posted, but even Mayo is now connecting Pots to CFS)...

The edges of the puzzle seem to be complete. Now for the picture in the middle.

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Nausea, fatigue and sleep disorders due to NE surges would all be tied.

Interesting topic.

I have 19 first cousins and in addition to my immediate family, they've all in good health.

My mother is 93, and especially so.

She's hypermobile, but other than than, nothing.

Because I recently got my lab results and my NE was over 1400, I wanted to know why. I began reading older Dinet posts and the new Mayo Pots paper posted by Issie.

In rereading the new Mayo paper that Issie posted, I found an interesting delineation Mayo is now making on hyper pots patients. In reading old Dinet posts it seemed that Vandy and Grubb were saying hyper pots patients had an EN level >600. Mayo disagreed. In reading this new paper Mayo is now dividing hyper pots patients into two groups. Those with NE >600 as 30% to 60% of pots patients and those with NE levels between 1000 and 2000 as a subgroup of 5% to 10% of patients.

Quoting: Between 30% and 60% of patients with POTS have evidence of increased central sympathetic drive, as reflected by standing plasma NE levels of 600 pg/mL or more...(goes on to say more)

These patients have been categorized into a primary or central hyperadrenergic subgroup with plasma NE levels often between 1000 and 2000 pg/mL that compromises approximately 5% to 10% of cases and a heterogeneous group of secondary hyperadrenergic POTS. (goes on to say more)

The paper goes on to say (quoting):Secondary hyperadrenergic POTS has also been associated with mast cell activation disorders.

The paper says much more on hyper pots specifically about NET and specific auto-immune issues under the hyper-pots topic, (first page of paper)

Anyone have any thoughts on this?

Here is the link to the Mayo paper Issie posted.

http://www.mayoclinicproceedings.org/article/S0025-6196(12)00896-8/fulltext

I've been searching old threads on Dinet, and there is some interesting information!

One thread is about Snri's and hyper pots. Has anyone had success with any anti-depressants lately? Here's a link to that forum thread.

It's a slightly older thread and I wonder if anyone will share their current experiences with snri's and ssri's. Anything helping anyone?

Also, this thread..http://forums.dinet.org/index.php?/topic/14028-hyperadrenergic/

I'll quote the writer, but won't add her name although it's a public post. She writes:

My supine norepinephrine was 250 and standing was 1089, and the mayo neuro called my mildly hyperadrenergic just to let you know. My heartrate usually doesn't go above 150 when I stand. When my BP spikes, my heartrate is often 60 lying and standing strangely enough, but it's during these times that I feel absolutely horrible.

Much written on older threads about the difference between Vandy's and Dr. Grubb's definition of hyper pots, (NE above 600) and the Mayo Clinics definition. They stated the above person had 'mild hyper pots' with a standing NE of 1089. So clearly they have different opinions on what constitutes hyper pots. Decided to reread the brand new Mayo paper on pots.

Just reread the new Mayo paper Issie posted on another thread, and Mayo now divides hyper pots patients...saying between 30 and 60 percent of pots patients have hyper pots with standing NE of >600 and later in the next sentence says 5 to 10% of hyper patients have standing NE between 1000 and 2000. I'm paraphrasing somewhat, they add other characteristics to each sub group.

Interesting. Did anyone else read that?

Mayo also has long held a strong viewpoint about pots having an auto-immune connection, and Vandy and Dr. Grubb were not on board with that either. Haven't gone digging in Mayo's new paper for more on that, but I suspect they're going to stay with that line of reasoning.

Would be really interested in knowing if anyone has had any luck with anti-depressents for hyper pots. I tend not to be able to tolerate them, although I could take zoloft for some reason.

Thanks for all the excellent information!

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Thanks Arizona girl,

I'm confused by the reactions. He also measured metanephrines. They were all normal. Meta tests are the primary way of checking for a pheo. Here's a wikipedia link to metanephrine http://en.wikipedia.org/wiki/Metanephrine

Or read this (pasting) An article in the Journal of the American Medical Association, 2002, indicated that the measurement of plasma free metanephrines is the best tool in the diagnosis of pheochromocytoma, an adrenal medullary neoplasm.

All metanephrines are within the normal range, done at the same time as the other tests mentioned.

An endocrinologist did order the acth stim test earlier this year, but the cardiologist added cortisol to this lab order. (normal)

I have read that elevated dopamine is associated with poor sleep function...Check!

Actually I would have preferred a pheo, exactly because it can be removed. I think most of us would prefer that?

This cardiologist, (also board certified as in internist) may suggest more testing, but I've read of people with hyper pots having NE as high as 2000. (Not common, but guess it can happen.)


I agree the test should have been done supine and standing, but the standing NE result is compelling. I'll ask him about it though.

What kinds of results did other people with hyper pots have with NE, dopamine etc..?

Sue, the doctor mentioned something about a 24 hour urine test, but I think he's referring to MCA testing. Hard to catch mca in a plasma draw, because you need to go to the lab when you're having an episode.

Sue, why do you think a 24 hour urine is necessary to get more info for hyper-pots? Thought because the metanphrines were normal, that rules out pheo? I'll ask him about it if you can tell me why it would be helpful.

Have that 'hit by a truck' feeling. Completely not able to do anything. Exhausted, etc...

I was reading old posts and found this on dinet from 2010. Any thoughts? Especially about Methyldopa and phenobarbital.

Copying and pasting below:

This is Dr. Grubbs recommendations for hyperadrenergic POTs if that is what you end up diagnosed with:

In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects. One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients.

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Thanks Sue and Rich,

The cardiologist did check for a pheo. The metanephrines and normetanephrines are within the normal range.

THe test was done standing up at 8:00 a.m. fasting.

Then endocrine workup makes a lot of sense. I have Hashimoto's so have had continuous workups with endocrinologists over the years.

The blood level of cortisol was within normal limits on this test and in the last year I had a more complex cortisol testing at the hospital. They draw blood, , inject ?, (don't remember what it's called), wait 45 minutes then draw blood again.

I understand the correct way to do the test is as you explained. I explained why it wasn't ordered that way on a thread called 'Dr. Grubb and hyperadrenergic pots.' (i think the nurse didn't type the script correctly.)

Yes, the NE is almost 3 times 2 high. I've read it can go as high as 2000 with hyper-pots.

I don't understand is why the epinephrine is so low! Does this make sense to anyone, or does everyone else have this kind of result too?

Thanks for your help! I see the cardiologist Tues. and am trying to put questions together. (He's also board certified as an internist, though practices cardiology only.)

Thank you again.

I also get flushing every night and usually after eating. Occasionally get it during the day as well.

My doctor suspects I have mastocytosis, and I'm wondering if the flushing is in part due to eating foods that are high histimine foods.

Thanks Issie! Am going to take any information and suggestions to the cardiologist on Tuesday.

Sue, the test was not done on a TT or laying down. Drawn at a hospital lab.

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I'm can't take beta blockers, (hyper pots with suspected mca)

My heart rate is between 90 and 100 when I wake up in the morning and still laying in bed. Am sure it hasn't always been that way, and desperately hoping to get it down soon.

Good luck! I hope you can get yours back down. Are you able to take bb's?

Btw, I just went by the hospital lab to pick up a copy of my labs.

My norepinephrine (NE) level was 1419. (normal range is 80-520).

Epinephrine is <10 (normal is 10-200)

Dopamine high at 36, (normal range 0-20)

Metanephrines 0.12, within normal so no pheo.

Hyper-pots people, please give me your feedback and experience. I see my cardiologist on Tuesday.

Thank you!

I've been researching Dinet and the web trying to determine what meds people are using for hyper pots.

It seems many of us with hyper pots also have mca or suspected mca.

What H1 and H2 blockers do you use, and has Clonodine, Gastrocrom, or SSRI's been helpful? If so what dosages?