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Dr. Patricia Lugar at Duke (Read 18296 times)

Riverwn

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Dr. Patricia Lugar at Duke
12/30/10 at 15:37:53

(Archived from sharon-nc - original forum)
sharon-nc
Dr. Lugar worked with Dr. Cem Akin. She is not recognized on the TMS board as a masto specialist, but she is the best we have so far in this region. She has learned a great deal about masto, IA, UP & related disorders from working with Dr. Akin and is currently doing research on IA. She's very attentive and seems very knowledgable.
I saw her last Friday - she spent almost 2 hours with me. That was after she read the 3 inch volumn of medical records that I brought for my first visit. And she had read the medical records - not only did she ask me about the major issues with my health over the last few years, she asked about some small things in my records that many people (Doc's wouldn't have even noticed). I was very impressed.
She told me that she would be speaking with my Cardiologist about my fainting spells - she thinks that something needs to be done there that is not being done. She also will be speaking with my neuro about how he is treating my tremors - she suspects that he is missing something.
She said to me that often Docs will see systemic mastocytosis as a diagnosis and will decide that anything that is going on with that patient is due to systemic mastocytosis and may miss something that could be treated. I was going to tell her that about my tremors, but she got it and is working on it. I see her again in on Dec 4 and will let ya'll know how it goes.
She put me on what she calls her "IA cocktail" of meds, I'll list it in the medicines section of this forum.
She also took what surely must have been a gallon of blood for various tests and will be doing a 24 hour urine with my local Doc.
The good news is that I am feeling pretty good. I was quite sick when I saw her, and I am doing better. I started on her "IA cocktail" right away and while it is causing me to sleep more than I want to I highly suspect its helping. I haven't fainted but once sense I started on it. Haven't shocked this week. I'm pretty excited. Now if I can just get back to that going six weeks without shocking.
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Sharon in NC
14 November 2008 02:55 PM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Dr. Patricia Lugar at Duke Reply #1 - 12/30/10 at 15:39:55 (Archived from eener - original forum) eener Sharon, Please keep me updated on Dr. Luger and her approach to all this. I am definitely interested in seeing her for a second opinion. It can only help to have another mind working on it. There's no one else here in NC! Renee __________________ Renee 14 November 2008 04:56 PM
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Re: Dr. Patricia Lugar at Duke
Reply #2 - 12/30/10 at 15:41:54

(Archived from uliegee- original forum)
uliegee
Sharon,

It's great to see you posting again! I'm so glad you're getting some relief on this new regimen.

I was just reading about your fainting. You're probably aware that there's quite a bit of overlap between mast cell issues and autonomic dysfunctions: POTS, NMH, and NCS. That may be what Dr. Lugar is referring to.

My son takes daily meds for NMH/NCS that really help. I have POTs/NMH and occasionally take meds for it when I get really bad: can't eat/lightheaded, etc. The mast cell issues and autonomic issues are very intertwined. The meds for MCAS make the autonomic stuff better for me.

I hope you get releief and get things figured out soon.

Julie
14 November 2008 09:09 PM

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Re: Dr. Patricia Lugar at Duke
Reply #3 - 12/30/10 at 15:43:29

(Archived from sharon-nc - original forum)
sharon-nc
Julie,
Yes, I have been diagnosed with POTS, but as best as I can tell we aren't really doing anything for it other than the masto meds. Do you take other meds for POTS? I am still having the dizzyness and had an almost faint about an hour ago. OK, probably it qualifies as a faint, but it was a simple everything turned black and I slid down the side of the grocery cart. I didn't really hit the floor and was just woozy after that. Hubby was with me and my neighbor was also on the same aisle as us.
I sat in the car while he finished getting the groceries - we have tons of foot ball watching snack foods now. Good thing we had already passed the veggies.
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Sharon in NC
15 November 2008 04:12 PM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Dr. Patricia Lugar at Duke Reply #4 - 12/30/10 at 15:44:44 (Archived from sharon-nc - original forum) sharon-nc Renee, I am so excited about Dr. Lugar. The possibility of not having to travel so far to see a masto Doc is just plain out exciting to me. I'll be posting about my experiences with her, however it goes. Sharon __________________ Sharon in NC 15 November 2008 04:16 PM
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Re: Dr. Patricia Lugar at Duke
Reply #5 - 12/30/10 at 15:46:25

(Archived from juliegee- original forum)
juliegee
That doesn't sound good. I'm awfully glad you weren't alone! I'm sure your POTS DX is correct, but it sounds like you've also got neurally mediated hypotension NMH, sometimes referred to an nuerocardiogenic syncope NCS. This just means that your BP can precipitiously drop when the blood pools in your feet and isn't properly pumped back up to your brain. Folks with POTS rarely faint, but those with NMH/NCS do regularly. I've got both POTS/NMH and am not taking anything specifically for them now.

My son has NMH/NCS and takes florinef and salt tablets. When my symptoms are really bad I take them too with great results. Florinef is a lifesaver!!!! It helps increase blood volume in your body so the blood can more easily circulate back up to your brain.

You can start by taking OTC salt/potassium tablets (Thermotabs), one with each meal, with lots of extra fluid. If that helps, ask your PCP about trying florinef. Start with 1/2 of a tablet .05mg (combined with Thermotabs & lots of water.) Watch your BP carefully as florinef can raise it. If you feel better after a week og .05mg, try going up to a whole tablet .1mg. If you get a headache or your BP raises too high, go back down to your previous dose.

When I start fainting alot or get lots of tachy, I go back to this regimen and feel so much better right away. Whoever DXed you with the POTS can help with an official NMH/NCS DX.

I hope you're better soon.

Julie
15 November 2008 10:55 PM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Dr. Patricia Lugar at Duke Reply #6 - 12/30/10 at 15:48:08 (Archived from sandralee - original forum) sandralee Sharon, Glad you made such a good connection with this new doctor. Hope it keeps working for you! Sandra Lee 16 November 2008 10:40 AM
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Re: Dr. Patricia Lugar at Duke
Reply #7 - 12/30/10 at 15:49:19

(Archived from sharon-nc - original forum)
sharon-nc
On Friday I had another visit with Dr. Lugar. This was my second visit. She now has all my medical records. Tests results from the test she ran at my first visit and notes from the two phone calls to me, and my cardiologist.
Since my blood pressure has remained so low, she has taken me off all medications that cause sedation - including Zyrtec and Zyzal (I was taking Zyrtec, switched to Zyzal to see if it would be less sedating to me - it wasn't).
I am still taking Clarinex & Zantac, for anithistamines and have my epi pen close by with benedryl - in the event of a shock.

She is concerned that some of the issues I am having - mostly related to the low blood pressure - are not masto symptoms at all, but symptoms of Neurocardiogenic Syncope - which I do have. She called and spoke with my Cardiologist again when I was at her office on Friday.
My blood pressure has been very low 80's over 50's - and I have been fainting a lot. She makes sense on her approach. I do have some cardiac issues, I am feeling positive about where she is headed on this.
For the Neurocardiogenic Syncope we have tried Florinef (I retained fluids, went from a size 4 to a size 12 in 4 days, but saw no increase in blood pressure), I am already on a high salt diet and sodium tablets - Thermotabs. We have also tried epi jr. for an increase in blood pressure, it does bring it up a little - initially that was very effective, but is no longer working for me. We also recently tried compression stockings - oh now this seemed so practical not a drug - I triggered to the fabric couldn't get the stockings off fast enough - big trouble. The final attempt (so far) on raising my blood pressure was to try theophyline (an old asthma drug) - we did that on Wednesday before my seeing Dr. Lugar on Friday. I shocked to the theophyline - usually I speak very cavalier about shocking. I am a shocker, this particular one probably will never fall into my cavalier shocking stories - it was quick, severe, frightening, all of those things and more - but fast service at the ER.

Dr. Lugar is suggesting to my Cardiologist that they do another tilt table test - I have had a couple, but not with this cardiologist. And to try to determine if I am a good candidate for a pace maker - my cardiologist has already spoken to me about a pace maker as a "last resort", but at this point I am ready to try to install it myself if it will bring relief.

She is also refering me to an endocrinologist for testing for diabetes insipedus (which may be spelled wrong). It is her feeling that when Doc's see the diagnosis of Systemic Mastocytosis that they will dump anything that is going weird in that patient to that diagnosis and not follow through on other things that may be going on. The 24 hour urine test that she ordered provided the results that she was expecting for a masto patient. But, she wasn't expecting over a gallon of urine. She wants to find out why I am "going" so much - that should explain some of the dehydration I am experiencing.

We are chasing around some things. But I feel that all of this is good news in that we may get some answers and potential treatments.

In the meantime, I'll be hanging out in my pajamas trying not to faint or at least trying not to break anything when I faint.
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Sharon in NC
21 December 2008 10:24 AM

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Re: Dr. Patricia Lugar at Duke
Reply #8 - 12/30/10 at 15:51:04

(Archived from deborahw - original forum)
deborahw
I am puzzled. Fainting and low blood pressure are classic mast cell disease (anaphylaxis) symptoms and yet you are reducing your mast cell meds? That kind of worries me. Maybe you just need to try a different combo of masto meds.
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Deborah
21 December 2008 10:56 AM

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Re: Dr. Patricia Lugar at Duke
Reply #9 - 12/30/10 at 15:52:12

(Archived from sharon-nc - original forum)
sharon-nc
I think its a matter of last resort - we have upped the meds and downed the meds. And rearranged in every possible concoction. Since in my case there are known cardiac issues, they are going to chase that idea before rearranging the meds again.
Its very frustrating - but it I expect to get through with the Cardiologist's tests very quickly - we are trying to schedule that stuff for the days following Christmas - cancelled my usual after Christmas beach trip just for that. He may end up sending me back to Dr. Lugar and telling her that it is masto, but I plan on chasing this down as quickly as possible.
Endocrinologist testing is planned for as soon as the Cardiologist is finished.
Since so much work has been done with my medications, I am willing to chase these two, even if its just on possibility. I do still have my ginormous medicine cabinet with every antihistamine known to man kind.
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Sharon in NC
21 December 2008 11:28 AM

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Re: Dr. Patricia Lugar at Duke
Reply #10 - 12/30/10 at 15:53:56

(Archived from sandralee - original forum)
sandralee
Sharon, I am so sorry you are having to cope with all this. I'm really hoping you have a good resolution on this soon! My blood pressure is consistently also on the low side (90 over something) and my GP is concerned about this, but hasn't had any particular suggestions. I'm not having any symptoms at present. Hugs, Sandra Lee
27 December 2008 08:16 AM

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Re: Dr. Patricia Lugar at Duke
Reply #11 - 12/30/10 at 15:54:59

(Archived from sharon-nc - original forum)
sharon-nc
Sandra,
For me just above 91 over something is fine and functional. When I get to 90 over something or below that - where I've been lately as low as 77 over something - that is big trouble. I can't think of a time that I have actually seen 120/80 on a blood pressure machine measuring me - I tend toward the low side. At 96 over something, I feel great. Unless my mast cells are working on some other "project."
If you BP is low, but you don't have drops when you stand, move, or do stuff then you probably are OK. The problem that we run into with the lower BP's is that there is no room to drop and stay functional. With a top number of 96 I have a little room to drop and still be OK, at 90 there is no room to drop without fainting.
I'll be fainting around now, it seems to be my new hobby. I have other hobbies that I'd rather enjoy.
Hugs,
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Sharon in NC
28 December 2008 11:01 AM

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Re: Dr. Patricia Lugar at Duke
Reply #12 - 12/30/10 at 15:56:57

(Archived from sandralee - original forum)
sandralee

Sharon,

Here's a different thought!

The soleus muscle in the calf is called the 'second heart' because of it's role in pumping blood back up into the brain. Low pressure and unexpected fainting can be due to weak or poorly functioning soleus muscles. This can be due to myofascial trigger points in the muscle. This info is based on the work of Dr. Janet Travell, the White House Physician to JFK.

I'm not suggesting that your low blood pressure is due only to trigger points, because obviously it's a masto issue and histamine has an effect on blood pressure. But trigger points could be an added factor. Especially since I know you like to work out and that's an easy way to inadvertently get trigger points!

I definitely have serious trigger points in my soleus muscles! Trigger points are like small hard nodules, but they are much more than just a simple muscle knot. There's a lot more to it than I can explain here. Dr. Travell wrote two whole huge manuals about it. Generally, trigger points refer pain to other areas, so a trigger point in the soleus can cause heel pain, for example. But then they can have other effects, like the low blood pressure, in this case. So you might feel around and see if you find any hard knots in your calves.

You have to be careful working with trigger points as it's easy to make them worse. There are different theories about the best way to work on them, some employ stroking, others compression. If this resonates with you, you could google 'soleus trigger point' and see what you come up with in terms of how to massage it. Working a point too hard or too much can make it much worse. Gentle, very gentle, stretching can help as can moist heat. Although I just use my hot water bottle. But I'll warn you from experience that stretching when the muscle is very cold, like in the morning, or too vigorously can really aggravate a TrP. It also takes time if you have long-standing TrP's. They don't go away overnight. Often, they can be latent so you don't feel any pain but they are still there.

Also, a rocking chair is a good way to gently exercise the soleus. JFK had a specially designed rocking chair at the White House just for this purpose. JFK was in horrendous back pain when he was a senator and also had adrenal fatigue. It was Dr. Travell who treated him then and continued to treatment him when he was President.

The book I use for guidance is called The Trigger Point Therapy Workbook by Clair Davies. He is definitely an advocate for firm stroking in one direction, 10-12 strokes, 6 times a day, as opposed to a compression advocate. There are a few other books available on the topic as well.

I just happened to come across this bit on the soleus muscle last night!

I used to get light-headed when I stood up and dizzy sometimes. I also had a couple of months of bad vertigo. That was a few years ago. I suspect that eliminating certain foods from my diet helped me out in that regard, as it generally isn't a problem anymore. Every once in a while I might feel light-headed, but it's quite rare now. of course, the trade-off is that there's hardly anything left I can eat! (Ha-ha!!!)

Just thought I would pass the trigger point idea onto you. If it doesn't fit, that's fine too.

Lots of love, Sandra Lee
30 December 2008 09:13 AM

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Re: Dr. Patricia Lugar at Duke
Reply #13 - 12/30/10 at 15:58:28

(Archived from sharon-nc - original forum)
sharon-nc

Sandra,
This is fascinating. My web research keeps running into this theory too. Being that one of my big life goals is to be a total "gym rat", its definitely something to consider.
I think I don't have trigger points - my Doc says I do - he can find them and make me "know" them in a way that is quite painful.
Very interesting. I think I have some reading to do. Thank you!
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Sharon in NC
30 December 2008 12:33 PM

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Re: Dr. Patricia Lugar at Duke
Reply #14 - 12/30/10 at 16:00:14

(Archived from sandralee - original forum)
sandralee
Glad it's of some interest. A rocking chair seems a lot more friendly than compression stockings! Interestingly, trigger points respond to climate too. Definitely do not like cold weather! And allergens and sensitivities.

The books that have helped me the most are:

The Trigger Point Therapy Workbook, Clair Davies (self-treatment with massage)
Fibromyalgia and Chronic Myofascial Pain, Devon Starlanyl (load with info)
(Explains these as two different entities)
Trigger Point Therapy for Myofascial Pain, Donna Finando or
The Trigger Point Self-care Manual, Donna Finando (self-treatment with stretching)

There's also Winners Guide to Pain Releif by Hal Blatman, which I haven't seen or read yet. (self treatment with stretching and a ball on the wall)

Websites:
www.sover.net/~devstar/
--this is Devon Starlanyl's site
www.blatmanpainclinic.com
--this is Hal Blatman's site, he definitely focuses on gym rat types!!!!

If you ever go to someone for treatment, be sure they really, really know myofascial trigger points. Many physical therapists do not and may make one's problems worse. They will often try to strengthen the muscle, which will only make matters worse as long as it contains a trigger point.

That may be more than you want or need to know!!! Trigger points are awesome. It's amazing all they can trigger. I have quite a few trigger points, but I haven't worked on them systematically. As soon as the winter comes along, they rear their ugly little heads.

Good luck. I just hope you find something that helps you, whether it's this or drugs or something else!

Sandra Lee
30 December 2008 02:07 PM

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