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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

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

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

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 Hrm... 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. <{POST_SNAPBACK}>

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

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