violahen

Hi Everyone:

I spoke with Debbie again today at MCO and she gave me the update on Dr. Grubb. He had surgery this morning. There is no news yet on the outcome.

She did say that Dr. Grubb himself is taking this very seriously and suspects that it is in fact cancer. She said he is very worried, and that his health has been declining over the past months.

THIS NEXT PART IS IMPORTANT FOR ALL OF US:

I asked Debbie if there was something we could do to help. She said that it would be helpful if I could get the word out that he is extremely ill and that if people could avoid calling unless it is absolutley necessary it would help immensely.

She said the best case scenario (no cancer) would still keep him out of commission for the next month. They are not expecting him to see any patients for at least a month. They will have an alternate doctor for people to see if they have scheduled appointments. She also said that many people don't want to see the alternate doctor (which I can completely understand...no one could ever replace Dr. Grubb.) and that some have been less-than-pleasant about not being able to see him. So, please know that it is for GOOD REASON that doctor Grubb is unavailable right now.

We can only hope and pray that he has a full recovery....again...for him...and for us.

I have made arrangements to speak with Debbie again in the next few days to get an update on the outcome of the surgery. I, of course, will keep you all posted.

Worry and concern has consumed me ever since I heard this horrible news. For me, Dr. Grubb has been my lifeline....my biggest source of support and hope. He is a VERY special human being.

Kristen

Hi Julia:

Thanks for your post.

I'm glad that you know Ken Davis as well. Yes, he is the greatest! He is a huge part of my support system. I put a call into him yesterday to see if he could give me any more info on Dr. Grubb. He is always very frank about that stuff...he was the one who told me about his back surgery. In any case, he is away until Monday, but I am sure he will call me back.

Thanks for keeping up with this.

Kristen

He is on vacation

I'm sure that those that are calling for appointments/questions or help have no clue what's going on with Dr. Grubb right now.  So basically they won't know that their call is just another call NOT needed at this time.

I think the only way we can help is to tell everyone to hold off if they can on phone calls---unless it's an emergency situation, and then they will be referred to someone that can help if possible. 

I thought Dr. Grubb was just having a revision of his neck surgery.  I had no clue how serious it was until I read your post Kristen.  I was helping a woman who came to see Dr. Grubb from Missouri early last week.  She said he seemed not himself.  The nurse from there told her later that he was going to have to have another neck surgery.

I just spoke with her on the phone again tonight and she verified that this IS what she heard.  But today i'm finding out his cancer might be back via phone call to his office----and it might be in his kidneys.  Don't quote me on that because i'm not sure if the information is right, and i'm not sure what is going on.  I guess the safe bet would be to only hear it from his lips.

Whatever the case is, my prayers will be with him and his family.

By the way, I have seen Ken Davis.  He's the greatest!  He has helped me in many ways, including helping me with the many questions I had regarding our local support group.  He was so very supportive, and one of the most diplomatic people I ever met.

Julie :0)

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Hi Julia:

Thanks so much for the info you supplied. I am so worried about Dr. Grubb and his family.

I get to Toledo every couple of weeks from Cleveland where I live to see either Dr. Grubb or Ken Davis (perhaps you know him...he is a psychologist friend of Dr. Grubb's who deals mostly with chronic illness issues and dysautonomia stuff), but it sounds like you have a much closer connection because you live so close by.

Do you think there is anything we can do on this forum that might be helpful to him and/or his staff?

Thanks.

Kristen

specially

I have gone over to MCO a couple of times.  Once to take the card from all of us, along with all the well wishes from this web site, and another time to take more well wishes that I missed with another card.  The first time I also took a Happy Hannukah as well.  I kept trying to catch this person I rely on, but kept missing her.

She usually is able to let me know what is going on with Dr. Grubb.  She gives me straight answers-------no run around.  Finally I got in touch with her today.  Dr. Grubb is going to have surgery tomorrow for possible Cancer in the Kidneys. 

Let's all pray for a good outcome to his surgery.  The person I talked to said many are still calling not thinking about the impact this is having on all involved.

I'll be keeping him and his family in my prayers for NO cancer----or if they do find it, it's contained and easily curable.

Julie :0)

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Hi:

I don't know what hospital he is in. I have put a couple of calls/e-mails out...one to his staff and another to a personal friend and colleague of his.

I will keep everyone posted if I hear anything.

I am still in shock and deep despair for him especially...and, selfishly, for us as well.

Kristen

Hi everyone:

I am writing in tears to all of you to let you know that I just called Dr. Grubb's office about a paperwork issue and the nurse told me that he is on medical leave again and that it is very serious. I tried to push her for info and she said it was very bad. I asked if it was cancer again (he had cancer once before), and she said possibly and that he was going through surgery right now.

I don't suggest that anyone call in...it doesn't sound like they can handle be inundated with calls right now.

I would be happy to be the designated information seeker so that everyone can be updated. Or if someone else would like to, of course, that's fine too.

I, as I'm sure you all are who know him, am devastated by this news.

Please send him your prayers.

Kristen

Hi:

My drinking days are over. I can't seem to tolerate any alcohol with POTS....it really makes my symptoms much worse....It's true though that the POTS symptoms can be just as bad or worse than a hangover....my problem is that alcohol and other things like caffeine....actually any stimulants or depressants tend to send me into a major POTS crash that ends up taking very long to bounce back from.

Good luck!

Kristen

Horay!

I am so happy for you! You are a smart and brave soul with persistence and determination! Good for you!

We are all proud of you!

Good luck and don't give up...even if all of the answers don't come immediately....it's a tricky and sneaky disease.

Keep us posted!

Kristen

Hi:

I was born with POTS so I can't imagine a sudden onset! How cruel! You have my deepest sympathy. At the same, know that the rough times will be just that, but it doesn't mean that it will be that way forever. I also have periods of time where I am completely bedridden. It is horrible....and the worst part is the "not knowing"...the wondering where things are going from there....

I agree with Dawg Tired that there is always hope....I have had periods of time where I thought I would never feel better....and slowly but surely things got to a better stability.....The sad part for all of us is that our lives are like a constant rollercoaster....and every turn is a surprise...there is no predicting, no planning.

This disease has a mind of it's own.

The physical rollercoaster can do quite a number on the psyche as well....I find that I tend to go through different states of dealing with my illness at different times....sometimes it's total denial....sometimes it's strength and hope....sometimes it's giving in and crawling into bed and not getting out until I really can....that's the hardest one for me....I only recently have learned to allow myself to "give in" once in a while....Giving in does NOT mean giving up....it just means listening to your body and allowing yourself to go through the **** without fighting it.

I wish you all the best!

Don't be too hard on yourself!

Kristen

Hi Angela:

Wow, your post really hit home with me. Not only can I totally relate to the "avoidance of people I know" thing, but I am also an "artist". I am a professional musician. I went to Juilliard and lived in NYC for many years. I was actually diagnosed with dysautonomia while I was in school there. Actually, I almost didn't get my degree because I was so sick. I was in and out of the hospital for most of my last year of school. (By the way, I was born with POTS. I can't imagine having a sudden onset of it! I feel lucky that at least I am familiar with it....really it is all I know in terms of my health and well (or not-so-well) being. I often wonder what it would feel like to be a "normal" healthy person.

Now I am in a place where my career is barely existent. I went from being in the middle of "it all" in NYC with a great aspiring career to someone who had to completely change my life because of my illness. I can't tell you how many times I have passed out and/or gotten sick on stage in performance. Employers aren't very keen on that. Quickly the word got out about me....that I was sick...or in my own words...."damaged goods".

In any case, enough about me....one thing that I can really read into your post which I understand too well is the struggle with letting go of your art...your personae as an artist whether it be musician, dancer, painter, etc. For me, I am a musician whether I am able to get up and play or not....but somehow it's hard to believe that my colleagues and peers (especially the successful ones) don't look at me differently because I don't do it anymore or at most, play very little.

I have two very close friends that I went all through Juilliard with. We are all viola players. They are both extremely successful in their musical lives. Of course, I am thrilled for them, but I guess I'm also pretty envious and jealous of that. I feel like I've really been cheated out of something that has meant so much to me for so long....almost my whole life.

I really think it is different for artist types...musicians and dancers especially...because the field is SO competitive....those of us who decide to go for it do it because we can't live without it...we certainly don't do it for the money!!! And then when you are suddenly faced with not having a choice whether to do it or not it is utterly heartbreaking.

I don't know if I have relayed my message to you very well....but I DO understand how bad it feels to run into someone who is very successful at something that you can't do anymore...something that has always been your life...and has now been taken away by illness.

I haven't completely left music (yet.) The reason I haven't let it go completely is because it is such a big part of me and my personae as a human being. I just can't let it die...although sometimes I think I really should. Either way it is painful for sure.

My only advice is to hold your head up high and call yourself a dancer whether you are able to do it right now or not. This nasty illness may keep you from the stage, but it really can't take dance (or anything!) from your heart and soul.

I'm 38 now and I have worked for many years to try to get rid of my "damaged goods" perception of myself. I think I'm doing pretty well with it by now, even though my illness continues to get worse.

Don't give up! I wish you all the best!

Kristen

Hi,

I can't offer up much about your EKG results. But I have had TWO heart caths. The first one was at Columbia Presbyterian Hosp in NYC when I was 21 and the second one was at Stanford Hosp. in California when I was 27. I am now 38. Neither of them was conclusive for me.

Yes, they can be very scary, but I really think they have come a long way in making them as "comfortable" for the patient as possible. My first one was much more traumatic than the second...and not just because I had been through it before.

Feel free to ask any specific questions about it and I would be happy to answer them.

The best thing you can do is to try to stay calm....I know it is tough, but you will get through it much better if you can convince yourself to stay calm.

Good luck.

Kristen

Hi:

yes, yes, yes....it all sounds familiar to me as well.....

Dr. Grubb has prescribed MagOx 400 for me....it can be purchased over the counter but at the pharmacy. It does seem to help. It is a 400mg mega-dose. I take it once a day in the morning. I've been on it for about a year now.

Good luck!

Kristen

Hi Hayley:

I ditto the stuff about diet...also eating big meals can be a problem because the blood goes to your stomach to try to help digestion and then the rest of your body doesn't have enough blood.

YES I have the chair issue! I am extremely sensitive to postural issues and exactly how the back of my chair is propped. Actually, I am a professional orchestral musician and I had an experience with my orchestra where they got new chairs and it was a disaster for me. For several days in a row I passed out straight away from the angle of the back of the chair! Now I try to be extra careful with my sitting position.

good luck!

Kristen

Hi Everyone:

Well, I was born with my POTS....although I was not definitively diagnosed with it until I was 36! As a child, my parents passed off my symptoms as me being a "nervous" hysterical child....They constantly just told me to "try to control myself"....actually they still can't accept it and tell me the same thing! By the time I was 20 my symptoms were much worse so I went in for a routine physical....that was when they discovered a real problem and that it was not in my head. At 36 I finally met Dr. Grubb and he gave me my diagnosis. I am 38 now.

I DID have very difficult pregnancies...I have two sons -3 and 5. I too threw up 24/7 for the whole 9 months of both pregnancies....I attribute it somewhat to the dysautonomia and general hyper-sensitivity of my body. Also, I had much more postural difficulty while I was pregnant...I was passing out constantly....my bp also stayed very low in pregnancy...as it normally is....I always seem to be on the verge of passing out.

Over the past year I seem to be getting worse....Dr. Grubb agrees...he is not sure why...perhaps pre-menopause...in any case, it is not fun as I am sure you all know.

One of the most diffilult things to deal with is the uncertainty of it all...the not knowing....it is all so unpredictable. Also, being able to have a quality of life (to some degree) and accepting my many limitations...especially as those limitations increase as my condition worsens.

Thanks for letting me blab!

Kristen

Kristen

Hi Persephone:

Yes, what you describe is familiar...all too familiar....The fact that you have had a lot to drink and are still thirsty leads me to wonder if you are severely dehydrated. You may want to consider getting IV fluids.

I have periods of time where no matter how much I try to hydrate I am still not getting enough fluids. I always make a point of drinking a lot as I've mentioned in other posts. However, even doing that I have had experiences like yours where I am still quite symptomatic and had to go to the hospital for IV fluids....this is something my doc (Dr. Grubb) recommends when things get this bad. When I have gone in for fluids and had blood work done I have been told that my test results show that I am EXTREMEMLY dehydrated....as if I had not had a drink for a week....and all the while I had been drinking constantly....just another aspect of the regulation problems in dysautonomia.

I have also had the vision problems you describe....I recently read....I can't remember where....in a research report of some kind....that this is associated with dysautonomia as well.

As far as the throbbing head....it is most likely that the blood is not getting to your brain...it's probably trying but your system isn't allowing it to happen....The blood vessels need to constrict in order for the blood not to pool in your lower body upon standing....but this does not always work in dysautonomika patients.

As a short-term suggestion, you might want to consider IV fluids...don't expect to feel great afterwards....it's not a cure-all, but it could help. Also, as my doctor has said to me...you might want to "dabble" in caffeine....I never drink caffeine because it tends to make my heart go nuts, but at times when I can't seem to get things going, I do try a little...it not only gets the heart going but it also constricts blood vessels. Do you normally drink caffeine?

Also, get as much rest as you can! Can you crawl into bed for a while and not get out? The stress of all of this is enormous on your body (and mind)!

Good luck!

Kristen

Yup,

I can do the flat palm heel down thing as well....in addition to several other "tricks"...I was shocked to find out from Dr. Grubb that this was common for POTS/dysautonomia people. Although it makes sense I guess.

Also, I am a professional musician (violist-which is like a violin only a little bigger) and the hypermobility issue has come up frequently due to the physical nature of playing. My fingers are all super loose...which in a way is both good and bad for musicians....I am very flexible, but sometimes to a fault and I need to struggle against the flexiblilty throughout my body.

I also tend to dislocate joints frequently....knees, hips, shoulder, limbs....not fun.

Glad to know I am not the only one....

Kristen

Hi:

Thanks for the info. I am also a POTS person with hermobility.

I hope you're ok!

Good luck!

Kristen

Hi Emily:

Thanks for your thoughtful remarks...I completely agree with you. It's tough to decide to take any drug...they all have their downsides.

Each of us needs to do what is right for ourselves, our bodies, and our quality of life.

Thanks for the affirmation. I take provigil, and it has given me somewhat of a life back....and for that I am extremely grateful.

My doctor (Dr. Grubb) is also very aware of the drugs I am taking and I trust him completely. He (and I) know the risks. However, sometimes you just have to take a chance...especially if you are desperate enough for relief!

Thanks!

Kristen

the thing is...all drugs that we take are risky in some way.

it is a hard call, but when your quality of life is low, sometimes you have to take the chance. so many of the drugs we take for POTS are off-label uses...beta-blockers, epogen, anti-depressants, stimulants, etc.

i take dexedrine...which is like speed! i am well-monitored by my doctor and he knows what he is doing. i am willing to take it b/c i want to have some symptom relief.

this is always a hard and difficult call to make...

also, i tried provigil and could never tolerate more than 50 mg which didn't help me at all.  at 200 mg i had anxiety and depression...not good!

sorry if i sound harsh...not the intention. always make the best, most well-informed decision for YOU...not what the rest of us think!  and, i don't mean to sound flippant...i don't just take any drug and not think about it! i've had my share of failures and horrible reactions.

so that's my two cents!

emily

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Hi:

You bring up an interesting point. I have asked Dr. Grubb about this. It is a tough call. But when I think about the condition I would be in if I didn't have the provigil to literally keep my body going, I know I would rather be on it.

I really think it should be considered only if there is a real necessity for it. I had gotten to the point where I could not function. My body would not go on it's own. It was absolutely horrible.

Fainting and near-fainting were too common for me. My bp was constantly hovering at around 80/40. I was barely conscious all the time....unfortunately, on the provigil I still get periods of that type of thing. But for me, it has certainly improved my quality of life. I actually HAVE a life....at least to some degree now.

Good luck!

Kristen

Boy, I just don't know. I'm reluctant to take it I think:

In addition to its wakefulness-promoting effects and increased locomotor activity in animals, in humans, PROVIGIL produces psychoactive? and euphoric effects, alterations in mood, perception, and thinking, and feelings typical of other CNS? stimulants. Modafinil is reinforcing, as evidenced by its self-administration in monkeys previously trained to self? administer cocaine; modafinil was also partially discriminated as stimulant-like.

Hrm...

DRUG ABUSE AND DEPENDENCE

Controlled Substance Class

Modafinil (PROVIGIL) is listed in Schedule IV of the Controlled Substances Act.

Abuse Potential and Dependence

In addition to its wakefulness-promoting effects and increased locomotor activity in animals, in humans, PROVIGIL produces psychoactive and euphoric effects, alterations in mood, perception, thinking and feelings typical of other CNS stimulants. In in vitro binding studies, modafinil binds to the dopamine reuptake site, and causes an increase in extracellular dopamine, but no increase in dopamine release. Modafinil is reinforcing, as evidenced by its self-administration in monkeys previously trained to self-administer cocaine. In some studies, Modafinil was also partially discriminated as stimulant-like. Physicians should follow patients closely, especially those with a history of drug and/or stimulant (e.g., methylphenidate, amphetamine, or cocaine) abuse. Patients should be observed for signs of misuse or abuse (e.g., incrementation of doses or drug-seeking behavior).

The abuse potential of modafinil (200, 400, and 800 mg) was assessed relative to methylphenidate (45 and 90 mg) in an inpatient study in individuals experienced with drugs of abuse. Results from this clincal study demonstrated that modafinil produced psychoactive and euphoric effects and feelings consistent with other scheduled CNS stimulants (methylphenidate).

If you feel the need to escalate your dose, it may NOT be because your condition is getting worse. At least that's my take on it.

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Dear Dr. Grubb:

I was so saddened to hear that you have not been well. Knowing what a hard worker you are, I am hoping you are giving yourself the time you need and deserve to heal completely! Ken Davis has hinted to me that you have been trying to do too much!

As much as we all need you and love you, we want you to be well and take care of YOU too!

Please know you have been in my thoughts and prayers. I look forward to seeing you soon!

TAKE IT EASY!

Shalom!

Kristen Linfante

Hi Everyone:

I think it's a great idea as well! I did speak with his office this week and he is out of town in Texas. You might want to check before going over if you want to catch him. She told me he would be out all week.

She also said that he is a mess. She said he is extremely fatigued and worn out. She also said he is very thin and doesn't look well. She said he is having a hard time bouncing back. Has anyone seen him lately?

I am sure he would love and appreciate all of our good wishes and healing thoughts.

I will send mine as well in another posting.

Thanks!

kristen

Hi Morgan:

Both you and your friend are in my thoughts and prayers.

Thinking of you.

Kristen

Hi:

Your symptoms sounds familiar to me. Don't be too surprised that your BP had gone up by the time you got home...especially since you walked home quickly and probably felt somewhat panicked over what was happening.

My guess is that you probably had a sudden drop in BP while standing....(standing in one position for a period of time can be real trouble for POTS people). That was what made you feel dizzy initially. That's the point that your heart starts to race to try to make up for the drop. However, that only makes things worse...not to mention more stressful. My guess is that during your quick walk home your body was struggling to regain stability and your brain was very stressed resulting in a quick rise in BP.

I had a very similar thing happen while in the doctor's office. I was at Dr. Grubb's office and was about to make a new appointment. I was standing at the secretary's desk. Suddenly I had a drop in BP and started to faint. They brought me back into the office and laid me down. By the time they got the bp cuff on me my heart was racing and my bp was high....not as high as yours was...but certainly high for me....mine tends to be very low 80/50. A sudden spike like that is most likely due to the combination of your own psychological stress level and your body desperately trying to recoup from it's "accident".

Good luck!

Kristen

Hi:

I have been taking provigil for almost a year now for the fatigue related symptoms of POTS. It works very well. I started on 100 mg and now I have bumped up to 150 due to a worsening of my condition in general.

Provigil is a narcelepsy drug, but it also helps with fatigue. It stays in your body for 6-8 hours so I should not disturb sleep at night. I take it once a day in the morning.

Warning....it is VERY expensive, and I have had a really hard time getting my insurance company to cover it. However, it is worth every penny if you have debilitating fatigue.

I can especially vouch for it's effectiveness based on the couple of times I have missed a dose due to pharmacy slowdowns in refilling. On those occasions of missing a dose I was an absolute mess. I cannot function without it.

It DOES help brain fog as well. I still have brain fog to some degree, but when I am not on the drug I can barely put two words together.

I HIGHLY recommend it.

Good luck.

Kristen

Hi:

I get IV therapy on a periodic basis as needed. If things are unstable and not improving I always get IV fluids. It is definitely a fast acting remedy if your body needs fluid volume. I have never had a problem getting my insurance to pay for it...although I am not on Medicaid or Medicare. The key is to get your doctor to refer you to have it done. Going to the emergency room for fluids (which is sometimes a necessity for all of us I'm sure) is much more of a hassle and I try to avoid it if I can.

I have taken salt tablets as well, but somehow they don't seem to help me.

Good luck.

Kristen

I had heard that some people benifit from getting saline IV's when they are really bad. I was wondering what the difference is between this and taking salt tablets.

sue

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Hi Beverly:

First, I want to commend you for being such a wonderful mom! Your committment and love for your daughter surely shines through! I am sure she needs that the most right now. I was born with POTS and my parents were too scared to ever have me seen by a doctor. I suffered through a terrifying childhood thinking I might die at any moment with no support from my parents. They attributed all of my symptoms to me being a "nervous" "hysterical" child. I was not diagnosed with a physical problem until I was 20 and out of the house! To this day they cannot accept that I have this illness.

In any case, I have two suggestions if you are considering making the trip to Dr. Grubb. First, he is very booked up for appts. First because all of the worst cases come from all over the country to see him...second because he had emergency back surgery recently and has missed quite a bit of work. He has a lot of appts. to make up. Normally his appts. can only be made about 6 months in advance.

HOWEVER, when I first got in touch with him I wrote him a letter outlining who I was and the details of my situation. At that time I expressed an interest in meeting him. You could either write to him or e-mail him. It may take a bit of time to get a response because of his backed-up workload, but he WILL respond. Also, be warned that his office staff is not always the most helpful. Be persistent.

Let me know if you would like an address and/or e-mail address.

Keep up the good work!

Kristen

Geneva,

Thank you for your response and all the details of your experience with the beta blocker.  It helps to know what others have experienced so you can assess better what might be taking place or not- even though everyone is different.  It really makes a huge difference to get others' perspectives.  I'm sorry you had such a hard time being wired like that not only from the beta blocker but from the Florinef as well.  This sure speaks to the power of drugs and individual sensitivies. Yesterday, Nicole took her crumb again and within 1/2 hour was feeling drugged - like drunk which is what she had said once before.  Prior to that she was feeling adrenaline--y which is what made me write the topic.  Now today after a night of sleep (will have to see what "kind" of sleep she had)- we'll see what today will bring.  She has had all sorts of experiences since starting this drug.  Hopefully they are side effects and will wear off after a couple of weeks. 

laila, thank you for your imput as well.  It seems as if you too had your nervous system revved up from the beta blocker.  You are also sensitive to drugs.  I'm glad that you found something to take away that 5 year period of anxiety.  Meanwhile your imput about your experience on the beta blocker is very useful.

violahen,

Thanks again- this time for answering my question so thoroughly.  It is certainly tempting to consider going to Dr. Grubb.  So many on this forum have said such great things about him.    There is so much about orchestrating such a far-away trip-for someone like Nicole- her individual situation- there are so many obstacles and factors to consider.  Hurdles.  One is that travel alone can send Nicole spiralling backwards- so we need to wait until she is sturdier.  Hotels have to be scent free- no carpet cleaning- no perfume (dryer sheet smell/ detergent fragrances) on sheets.  She would need to be supine the whole time- even if she was in a sturdier state.  Being upright for a length of time even while healthier can be problematic.  During the (Sept 15) last doctor's (new doc one hour away) visit to get answers is what sent her from one relapse (which she was climbing out of) into this horrible relapse within a relapse.  (Her relapses aren't just for a few days but for MONTHS and they aren't mild- she becomes entirely bedridden with lots of problems).  Because of her fragility she woud have to be way sturdier than she is now and sturdier than she was on Sept. 15 because of the reasons I just listed which means setting it up (appt for Dr. Grubb) for into next year. 

But from what everyone who has seen him has said- it seems like Dr. Grubb is totally on top of this illness while being compassionate.  Nicole is very scared of going even further backwards and I can't blame her.  Man oh man- it's not easy.  Even though Nicole is slowly but surely moving forward- this past 3 months has been some test of endurance - especially for Nicole.  And this is from going one hour away to a doctor who is very smart and came highly recommened to us because he looks for all sorts of pathogens and loads of other things. 

Also there is a doctor (POTS specialist in Boston) who knows Nicole and wants to do more testing on her.  He has his own autonomic lab.  He is very smart.  It makes sense that he would be the one we'd go back to first.  But I can at least call Dr. Grubbs office and explain our situation and see if they have other scent sensitive, easily relapsing patients who need to be supine, etc, etc, and see what they suggest. 

So right now (I'm just thinking out loud. .  .sorry.  . . we still have the new, local doc who came to the house and we are waiting for the results of his tests and his recommendations and he may test futher.  We have (sept. 15) doctor one hour away who has ordered his own tests a zilllion - many, many different kinds of tests and we are about to set up at home blood draws for that.  We have the Boston POTS doc waiting in the wings to do more testing (autonomic) on Nicole and the chance that Dr. Grubb (I am calling today) could help Nicole if we could orchestrate such at trip. 

Okay- I 've taken up so much space - thank you for your imput- everyone -and thanks for always being there- everyone- this has been so hard- and you've all been so great with advice and concern.  I am so grateful.

Thanks again so much for all of your imput.

Beverly

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