violahen

Hi Everyone: Just wanted to keep you posted on Dr. Grubb. I received a letter from him yesterday. He described his last several months of **** starting with his back problem. He was undergoing physical therapy (neck traction) when the force of the traction actually ruptured the disc that it was supposed to help. Within two hours he waas paralyzed and had emergency surgery. He said that while he was trying to take it easy and heal he was having a tough time bouncing back. He then went to Greece for a conference and then to Texas for another. By that time he was having severe pain that required medical attention. It was then that he had the CT scans done. They found tumors in his kidneys and adrenal glands. he was scheduled for immediate surgery. He said if both had turned out cancerous, it was a death sentence. The tumors in the kidneys were cancer, the adrenal tumors (at least right now) showed no cancer, thank goodness. There is still concern over the adrenal tumors and whether more will show up at a later time. I did want to post a quote that he wrote to all of us: "I truly appreciate your thoughts and wishes for my recovery. Indeed the outpouring of support from my patients has been a great source of comfort to me. Hopefully if all goes well I will be able to return to work sometime in February. Until then, I ask that people understand that this has been a very difficult time in my life and that I will resume practice once my physicians give the ok." That's all for now. Kristen

Hi Everyone: Thanks for all your input on this subject. i bit the bullet today and called the Clinic. I explained my situation exactly. They were actually very understanding and kind. I now have an appointment with Dr. Fouad on Feb. 8...I know that she is known for doing a LOT of testing...since I've been through it all before, I don't want to do it all again...they said as long as I had the results I wouldn't have to again....we'll see..... I know I am going to crash hard soon. I can feel it. Unfortunately my husband is out of town for the next two weeks and I am here alone with my two young kids. I am trying to take it easy but I'm sure I can stop this one. It's scary to think about not being able to call Dr. Grubb when this stuff starts happening. Kristen

Hi; I have POTS and I have equally as much trouble while lying down as I do when I am sitting or standing... I wake up from sleep very often having POTS symptoms....often even fainting while lying down....for years my docs didn't believe I could actually faint while lying down. Finally it happened while I was hospitalized. Now my doc is Dr. Grubb and he wasn't at all surprised to hear this. I have another strange phenomenon happen while lying down....documented in the hospital as well....my heart actually stops for a period of time if I lie completely flat. I ALWAYS have at least two pillows under my head....if I don't I can be assurred of passing out. Not a fun experience. Dysautonomia never fits into a nerat little box. It is unpredictible and changeable. Good luck! Kristen

hi Nina: I would be happy to connect with this person by phone...at least temporarily. kristen

Hi mary, My heart goes out to you. I am so sorry that you are suffering in so many ways. I too highly recommend seeing Dr. ken Davis in Toledo. He is a friend of Dr. Grubbs'...he is a very compassionate man...and very understanding about the money issue a well....I know that from first hand experience. He also works with dysaotonomia patients quite often is is completely up on our struggles. You sound like you feel so alone with no support. That is a terrible place to be. I suggest not bothering to try to use your last bits of energy to change the people and attitudes around you. Think about YOU....Do what you need FOR you. I suggest sitting down and figuring out what might give you some temporary relief....a drive alone, dinner with a friend, a bath, a movie....do something for yourslef. I know how hard it is to have hope in the midst of such ****. I also have two children...both healthy...and even to take care of healthy kids is a huge challenge. I can't imagine what you must be going through. Also, my husband, as good as a person as he is, is in complete denial about my health and can't deal with it. It is a huge challenge and has taken a real toll on my marriage as well. My thoughts are with you. Where in Ohio do you live? I live in Ohio as well. kristen

Hi: I can totally relate to your frustration. I have probably worn about 50 or so holter/event recorders in my life so far. It is miserable and frustrating because they often don't catch what you KNOW happens to you. You might want to see if you could get an event recorder instead of 24/hr holter. The event recordedrs are worn for a longer period of time and you puch a button when you have symptoms so that spot on the tape is marked....maybe you know all this already. In any case, don't let them or yourself doubt your illness just because it is not cut and dry and not appearing on a holter! I have a doctor who is very aware that holters are often unhelpful. He suspects that simply the anxiety and tension they produce while wearing them can actually mask symptoms on the recorder. Don't give up. Stand your ground and don't let your doc. doubt you and your illness. If they do, find another doc. Good luck! Kristen

Hi Ladies: Thanks for the info. I am going to look into it. Mindy, you said that you were initially diagnosed at the Clinic. How and when did Dr. Grubb come into the picture for you? Kristen

Hi Everyone: I just gor off the phone with Ken Davis. He is a good friend and colleague of Dr. Grubb. He is also a psychologist who not only helps with the emotional stuff, but also works with dysautonomia patients in particuar on neurological issues. He is a wonderful man and very sensitive to us POTS-types. The tumors that were removed from his kidneys were in fact malignant. The good news is that they think, at least with the pathology reports they have so far, that they got it all. They do not think it has spread, but they are being cautious because apparently these things can pop up after the fact. Dr. Grubb is resting well but in an incredible amount of pain. The incision is the width of his entire body. I don't know whether they will do any radiation or other therapy. He still plans on going back to work in mid-February....although docs are encouraging him to take his time. Dr. Davis feels this might be a bit ambitious and is encouraging Dr. Grubb to listen to his body and do it when he is ready. He is supposed to be getting a new nurse practitioner in February as well. That's about all for now. I am cautiously optimistic. Kristen

Hi Everyone: It's me, Kristen (violahen). I am a patient of Dr. Grubb's and surely plan to stick with him no matter what. In my mind, he's not only a heart/dysautonomia doctor...he is a HEART AND SOUL doctor. I have never met anyone like him. I am so distraught over his recent illness and pray for his revovery. However, since he is so ill and is likely not be working in the near future I am thinking that maybe I should take some advice he gave me a couple of years ago. I actually live in Cleveland...about 7 minutes from the Cleveland Clinic. I have never gone to the Clinic for treatment, tests, anything. Dr. Grubb suggested I might get a "back-up" doctor there for emergency situations (which of course, do come up...I have been to the Clinic's ER which was a NIGHTMARE..especially because I don't have a doctor there and they seem to think that they need to start from square one and do their OWN diagnosis...and of course the ER staff know little if anything about dysautonomia. They weren't willing to even CALL Dr. Grubb.) My concern about getting a back-up doctor is that most doctor's don't seem to have a humble enough ego to be condisered back-up!! I don't want to get into the middle of a power struggle. Does anyone see a doc at the Clinic who they feel would be able to handle a "second-string" type role? I really don't know what to do about it. I am particularly worried because Dr. Grubb is very ill and I have been on the fast-track towards a crash myself and think I need some medical attention. The thought of even seeing anyone other than Dr. Grubb is so difficult for me because in my mind, he is the only one I trust. After 36 years of being undiagnosed/misdiagnosed Dr. Grubb finally pinpointed my illness. It was life-changing for me. (I'm now 38.) I feel a special bond with Dr. Grubb and have a tough time imagining not having him around...temporarily or permanently. Blah, blah, blah! Sorry to ramble...I guess I'm just asking if anyone has a suggestion for a back-up doc at the Clinic.... BY THE WAY!, I literally do live about 7 minutes from the Clinic. I mentioned on another post regarding another topic that I would be HAPPY to be the DINET/Cleveland Clinic hospitality chairman/cruise director! If anyone is coming to the Clinic and would like some Clevleand hospitality PLEASE feel free to be in touch with me. I am happy to try to make any visit to the Clinic easier and less scary. Thanks. Kristen

Hi: Yes, I get this in both limbs. It's sort of an "ultra-weak" feeling where I have no control over my hands. It's very weird, and yes, a symptom of dysautonomia according to my doc. My only suggestion is to keep drinking LOTS of fluids to help boost your volume. Good luck! Kristen

Hi and Welcome! So sorry to hear about your struggles. I have not had ablations, but I have had two EP studies done...the hope was that they could ablate. Neither one resulted in ablation. I would try to see a dysautonomia expert before considering a complete sinus node ablation. It had been recommended to me years ago, and I never had the guts to do it. As it turns out, research shows now that the procedure does not tend to help people with dysautonomia anyway...often making them much worse. Others may have more info on this....I believe there may be articles in the archives on the site about this as well. Good luck in finding someone who can understand and help you through this very difficult problem. My thoughts and good wishes go out to you! Kristen

Hi: I have always been told by my docs to avoid and cough/cold meds....especially the sudafed type. It does make my heart go crazy...I haven't taken anything like that in years.. Also, the zoloft dosage sounds really high. I have taken zoloft, but no longer do. I was interested in the fact that your son takes the procrit shots. Do you find it helps? Dr. Grubb has been suggesting it for a year or so. But I hear it is extremely expensive. Is it worth it? Kristen

Hi Dawn: Best of luck on your trip. It sounds scary but hopeful.. I agree with the others that the alone time can be good. Although the support of others is never a bad thing either! By the way everyone, I live about 7 minutes from the Cleveland Clinic...although I am not a patient there....I see Dr. Grubb in Toledo....however, it is starting to seem nutty to me that I don't even have a "back-up" person there....but that just never seems to work...Dr. Grubb isn't opposed to it and actually feels it might be a good thing for those frequent situations where I need immediate medical attention...I just worry about the egos of the docs at the Clinic who would clearly know that they are not my #1 guy/girl. IF ANYONE IS EVER COMING TO THE CLINIC AND NEEDS SOME CLEVELAND HOSPITALITY, PLEASE LET ME KNOW! Kristen

Hi Lisa: I was really interested to see your post about exercise. I have been trying to deal with this issue for years. I have tried yoga and it was a disaster for me. I am so ULTRA sensitive to postural stuff and my body couldn't handle it. Honestly though, because it was such bad news for me, I never bothered to delve deeper into it to see if there was perhaps another variety that I might try that wouldn't be so problematic. Although, I have found that exercise of any kind is VERY tricky. I was so desperate to get some body conditioning because my POTS is getting worse and my body is getting weaker. About a year ago Dr. Grubb gave me a prescription for "Aquatic Therapy". I was excited and hoped for the best. I did the therapy with a ono-on-one coach who was familiar with dysautonomia at the Cleveland Clinic. Unfortunately, it made me a LOT worse. I understand the concept of being in a pool and having the pressure of the water against your body being a help with bp, etc, but it didn't happen for me. It had sort of a rebound effect. My body seemed the resist the pressure and I had a lot of trouble. In addition, upon getting out of the pool I became VERY symptomatic and had syncopal episodes on several occasions. After that I gave up for a while and spent much of the past year in a semi-functional state...lots of rest. However, just in the past couple of weeks I have tried something new at the suggestion of a friend. I had gotten to the point where I was so tired of being tired and wanted to try SOMETHING. I joined the "Curves" gym for women. The reason I thought it might work is that it is truly at your own pace. Slow and gentle is the key. It involves using weight machines, but the machines actually respond to your body in terms of difficulty. They work on resistance. The harder you work, the more resistance they give....the gentler you work, the less. And you only stay on a machine for 30 seconds at a time...or less if you prefer! The machines are staggared in a circle and between each machine is a small platform where you are supposed to just simply move in whatever way you can...also for 30 seconds at a time or less. Ideally you are supposed to continue around the circle for 30 minutes. I have the added bonus that the owner of my Curves has vasovagal syncope issues, so she is up on the dysautonomia issues. The environment is very supportive as well. I've been going for two weeks now....again VERY slowly. The toughest part of the "workout" for me is when I am done...my body has a tendancy to have a bit of a crash going from movement to non-movement....typical POTS. I am hopeful, but also I know that the possibility of me fainting or having tachy at the drop of a hat is very real...especially in an exercise situation. I have talked with Dr. Grubb at length about the dilemma of POTSies....inolerance for exercise, but real need to condition the body to gain the strength to fight when the chips are down and things are bad physically. Good luck! I hope you find something that works...SLOW! is key I think, and even then, don't be shocked by setbacks from time to time. Just TRYING to do something has really helped me mentally. Keep us posted! Kristen

Hi Everyone: I unfortunately missed a call from Debbie at MCO today, but she did relay to my husband that Dr. Grubb IS home from the hospital and resting comfortably. I still don't have info on how the surgery lab stuff came back, but I will keep everyone posted when I do hear. My fingers are crossed for him! Kristen

Hi Everyone: Just wanted to chime in and agree that Michelle, you are a wonder!, and that we should all donate if we can. I've just volunteered to join the fundraising committee as well...any other takers? I'm not sure about the time it would take, but what a worthy cause! Thanks everyone for your participation in this fabulous group! Discovering DINET and this forum has truly changed my life! Kristen

Congratulations Persephone I am so happy for you! Validation is such an important thing...especially when you are struggling with an illness like this. I wish you all the best in your treatments. (It took me 36 years to get an accurate diagnosis...I know how you feel!) Kristen

Hi Everyone: Just a word of thanks for all of your encouraging words during my lexapro weaning/withdrawal ****....it IS getting better after three weeks of being off. Whew! What a roller coaster ride! Kristen

Hi: My immune system seems to be struggling as well. In the past month I have had pneumonia and two other viral infections! I also have two young kids, and they certainly bring germs home, but I seem to be having a tough time fighting anything these days. Dr. Grubb has told me as well that I should have a flu shot every year....not only because of being more suseptible, but also because a viral infection can really escalate POTS symptoms. I really feel that my body is so weakened by fighting all my syptoms every day, that it doesn't have the strength to fight off other viral illnesses. I really feel for you! (By the way, my temp. is also normally low...97.4 or so. ) Good luck! Kristen

Hi; I agree with what everyone has said so far. Let let the docs make you feel like you have no say...it's your life after all! I am 38 now and was born with POTS/dysautonomia, and I wasn't accurately diagnosed until I was 36! Persistence definitely pays off. You are worth it! You have every right to express your concerns to your doc and to make requests. As for the change from Adderall to Ritalin...that seems odd because they are very similar drugs...I am not convinced that the switch would alleviate those symptoms that he/she feels are a result of the drug. I was on adderall for a while....it didn't help at all....I was shaky all the time as well...and I am a professional musician so I couldn't even play! My doc had prescribed adderall instead of ritalin because he said the side-effects would be less! If that's true, I can't imagine what ritalin would have done. As the others have said, do as much research on your own as you can, and go prepared with questions and concerns for your doctor. If he/she won't listen, I would start looking for someone who will! Good luck....I really understand what you are going through. Kristen

Hi Everyone: I just got off the phone with Debbie at MCO. She has offered to be our update person for info on Dr. Grubb's condition. She has suggested I call every few days, which I will. Of course, I will post everything I hear. She said he got through the surgery very well and that he is resting in the hospital. He will most likely stay in the hospital for a while. He was able to get up and walk for the first time today. It was, in fact, surgery on the kidneys as Julie had mentioned/suspected. They have not gotten all of the results back regarding malignancy, etc, BUT they DO think they got it all. The doctors were very pleased with the way the surgery went. Debbie did also say that this type of surgery on the kidneys is very tough and difficult for both doctor and patient. However, Dr. Grubb's wife, Barbara, said he is handling it well. If all goes well, the best case scenario is that he would return to work in mid-February. Let's all try to send him as much positive energy and prayers as we can muster! I am very relieved that he made it through the surgery well. Hopefully, he is on the road to recovery! Julie, do you think we should do another post for good wishes that can be delivered to him? That's all for now....big sigh... Kristen

Hi Ben! Welcome! So glad you found us! I have to tell you that you are hysterically funny...in case you weren't aware! Your idea about the dysautonomia tv commercial had me in tears laughing so hard! I can really relate to the treatment you've had in the UK over your illness...I am not from the UK, but we have a lot of stupid people in denial here too! Actually, in my case I was born with POTS, suffering severe symptoms ever since I can remember. However, I was not diagnosed with any type of physical problem until I was 21....and not specifically with POTS until I was 36! I am now 38....my own parents to this day will not accept that I have anything wrong with me...I can only imagine that it's a guilt thing since I was born with it....so I really understand what that type of "conditioning" can do to a person. For years I tried to "control" my symptoms....my parents always told me that it was all in my head and that I was just "too nervous and hysterical". I, unfortunately, believed them. I've had doctors tell me the same thing. It wasn't until I met my present doctor that I finally felt understood and justified in feeling the way I do physically. I am so sorry to hear that you have not been able to connect with an understanding, knowledgeable doc....I think it is the most important thing in dealing with this type of illness. Anyway, balh, blah, blah....I really just wanted to say WELCOME! I think you will really find a lot of support from this wonderful, fun, compassionate and SMART group of POTSies! Ask, tell, and vent as much as you need and want to! We are here for each other! I think you will find that no one understands what you are going through better! Good luck! Perhaps you can hook up with the doc that Persephone is going to see???? Keep us posted....I look forward to hearing more! Kristen

Hi: I had posted a topic a few weeks ago about going off lexapro. I've been on it for about two years...not for depression per se, but to help with POTS symptoms. I never really felt that it helped my symptoms....only made me care less...I was much more "blotto" and had really bad brain fog....still do. I also gained about 15 lbs on it which I am not happy about. In any case, with doc's permission, I have weaned myself off of it. The withdrawal is REALLY bad...now I know how powerful this drug is! At first I thought maybe I was going through a bad POTS period...or possibly about to have a big crash, but I did some research online about lexapro withdrawal and BINGO! That's me!....very dizzy, nauseated, joint pain...especially in my legs, very anxious, a general feeling of being disoriented, my body feels like it's floating but my head feels very heavy, etc, etc. I've never had panic attack issues before, but suddenly I know what others who experience them must feel. I haven't had one, but I feel on the verge all the time. It is horrible! On top of my already bad POTS symptoms, this is too much! I can barely function! Actually, I can't function. Just writing this is a huge challenge. My question is, has anyone had experience with withdrawal from SSRI's? How long can I expect this misery to last? Any words of wisdom or advice would be greatly appreciated. Thanks to all of you! This forum has been a life-saver for me. My support-system is very small, and sometimes non-existent. My husband has a tough time dealing with my illness...denial is his motto generally. He is a wonderful guy, but it is extremely difficult for him to face my health struggles. Dr. Grubb has kicked him in the butt more than a couple of times about this very issue! But all of you have truly lifted me up!! I KNOW you all understand. A million thanks. Kristen

Hi: I get night sweats pretty often. They usually wake me from sleep in the middle of the night. I am very symptomatic at those times and usually have difficulty standing up without fainting. My doctor says it is a symptom of my POTS. However,I don't necessarily feel any worse than usual the next day. The flu-like symptoms sound like maybe they are a result of the chronic infections you refer to. Also, I had enquired to my OB/GYN about this, wondering if it was early menopause. She did not think so, but she did say that lexapro and other SSRI type depressants could cause night sweats. My electrphysiologist had prescribed lexapro to me about 2 years ago because it relieves POTS symptoms for some. I have taken it for that period of time and actually just weaned myself off of them because they don't seem to help and seem to add to my brain fog. I'll let you know if the night sweats disappear! Good luck! I would look into getting rid of the chronic infections if you can. That can't be good on top of everything else! Sorry it's so difficult. (Just wondering....do you ever nap during the day? If so, do you get the sweats then as well?) Kristen

Hi: Yes, I've had it once. It was extremely painful I must say. But it wasn't so painful that I wouldn't do it again if it was recommended. I agree, it doesn't hold a candle to childbirth...that was painful! And the blood gas test is a LOT quicker! Kristen