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Hi: I got another confirmation today that Dr. Grubb will be back to work next week and that he is doing much better. Ken Davis saw him a few days ago and says he looks MUCH better than he had in the recent past. Also, subsequent pathology reports have been clear of cancer. They are optimistic but realize this type of thing can change overnight sometimes. I am cautiously sighing... Kristen

Hi Everyone: I thought this deserved a new heading. I spoke with MCO today and was told that Dr. Grubb is scheduled to return to work next week! Let's all cross our fingers for him! If I hear anymore details, I will post immediately! Kristen

Hi Everyone: I haven't heard anything since the letter I got from Dr. Grubb a couple of weeks ago. At that point they were cautiously optimistic but awaiting further biopsy results. I did speak with his office last week and they said I could expect to see him in March for my scheduled visit. I will be seeing Ken Davis tomorrow....a close friend and colleague of his, and I am sure I will get some new info. I PROMISE to post any new news tomorrow! Keep up the good thoughts and prayers! Kristen

Hi Everyone: I am so happy this topic was started. I too am going to see Dr. Fouad at the Clinic this Tuesday. Thanks. Kristen

Thanks so much for all of your advice. I appreciate the thoughts and support! Kristen

Congratulations! You did it! Isn't it the most incredible thing EVER!?!? I'm so proud of you...childbirth isn't easy for anybody...but for POTSIE's like us...wow! Best, best wishes! Kristen

Hi Nina: Rest, rest, rest....you don't have to take the whole world on your own shoulders! And by all means...let us take you on our shoulders every once in a while... hope you can relax and cecoup! Kristen

Hi: So sorry to hear about your trouble....I really can relate....My symptoms are very similar....I faint a lot and get extremely fatigued ....I also get horrible migraines. I am one of the ones who takes provigil....it stimulates the heart and body in general....it definitely helps my fatigue....if I weren't on it I would not be able to function at all....I consider it to be my life support. I also take MagOX 400...a mega-dose of magnesium which is over the counter.... I also take cerefolin...a prescription but it is more like a supploement....it is derived from folic acid and is supposed to help with brain fog. I just recently went off of lexapro but have since gone back on....some people take it for depression...it is also helpful to some with POTS symptoms....I stopped it because it didn't seem to help my symptoms....but have since noticed that my migraines are MUCH worse off of it....so now I am taking it again. Procrit is supposed to be a fantastic med....Dr. Grubb tells me it helps in most cases....the problem is it is VERY expensive.....I would love to try it....if only I could convince my insurance Co. to pay for it....they won't even pay for my provigil! Good luck and hang in there....we know how you feel. Don't give up hope! Kristen

Hi Blackwolf: I'm so sorry to hear about your continued trouble....I can really relate to your feeling that something is going to happen. I almost always get a sort of "premonition feeling" prior to getting really sick with my POTS stuff. If that's the case with you I would try to rest as much as possible and just allow yourself to listen to your body and don't doubt yourself....You don't need to justify your feelings to anyone....they ARE valid....and probably very accurate. Be persistent with the docs, and get yourself to a specialist who will listen. I'm a patient of Dr. Grubb's....I know he plans to come back sometime in February...he is also supposed to be getting an assistant to help out....have you ever seen him before, or have you been trying to get a first appt. with him? I know they are really backed up, but if you are already a patient, I would call back and see if SOMEONE can help there. Good luck.... Kristen

Hi Thanks so much for these.....They came at a perfect time for me....I am a physical mess lately. ALSO, your quotes are giving me ideas....I've just joined the DINET fundraising committee and we've been talking about making t-shirts, etc...to raise money....some of these quotes might be FANTASTIC to use. Thanks again! Kristen

Hi Steven: Welcome to the site! It sounds like you'v e come to the right place....I'm so sorry to hear about your suffering....it sure sounds like POTS to me...I'm not a doc but I have had POTS all my life and experience what you describe every day. I agree with the others...a tilt table test is a good idea....also, checking the physicians list on the site as well. Do you live in a large enough city that you can find an electrophysiologist (cardiologist who specializes in the electrical stuff)...if not, it might be worth a trip. Good luck and please keep us posted? We are all here to support each other. Kristen

Hi: Sorry I wasn't very clear. I have always had migraines...along with POTS. Lexapro was prescribed by Dr. Grubb for my POTS symptoms however...not specifically my migraines. But I did notice that while I was on it my migraines were less severe. I was never sure if it was a coincidence or not....but now I think not because now that I am off of lexapro my migraines are UNBEARABLE. Thanks for your thoughts and comments. I soooo appreciate them all! Kristen

Hi Everyone: I haven't checked in with the forum for a while. I have been going through one of my worst physical times ever. I just got out of the hospital and I am still a wreck. My POTS has been really exascerbated by the fact that I hve had the flu for a week. (The POTS stuff was really acting up before the flu and then....bam. But my question for you guys is about lexapro....some of you may recall that I stopped taking lexapro about a month ago...I just didn't think it was helping. The withdrawal was **** but I was happy to finally be off of it. HOWEVER, I get migraines when I get my period and I just got the WORST migraine I have ever had in my life. While in the hospital I was in so much pain that I was starting to hallucinate. The migraine is slowly improving...I've had it for three days...and I am recalling that when I first started lexapro I noticed my migraines were much LESS severe....I remember thinking, WOW, if this is helping my migraines, it's worth it....I guess I eventually took it for granted that it seemed to help. Has anyone else had this experience? Out of desperation, I think I am going to go back on lexapro because I just can't deal with another migraine like this one. Thanks. Kristen

Name: Kristen Age: 38 DX: POTS, EDS Age at DX: Diagnosed with a neurocardiogenic problem at 21, definitive diagnosis at 36 (However, I was born with POTS and EDS) I live in Cleveland, OH Worst symptoms: the worst has probably been my heart stopping for a period of time, frequent fainting, wide variations of heart rate and bp ranging from way too slow to way too fast, sweating, shaking, chest pain, migraines, visual disturbances, GI problems, severe brain fog, inability to stand up, EXTREME fatigue, electrolyte imbalance, night sweats At best I can stand up and walk around and function pretty well, but always with major fatigue, my bp tends to be low...at best 90/60...often more like 80/40, There have been so many meds I've tried (at least 100 or so)...inderal, florinef, digoxin, lexapro, adderall, wellbutrin, midodrine, etc, etc, I am now on provigil, magox 400, and cerefolin. Dr. Grubb would like for me to try Procrit, but I can't afford it and my insurance won't cover it. Kristen

Hi Everyone: I have POTS and EDS....born with both and they are both difficult. That's the bad news. The good news is that I have two very healthy boys (3 and 6) and neither of them got any of my laundry list of of medical problems. Motherhood is the most wonderful thing in life that I can imagine. For me it was worth the risk. I was worried about passing a difficult life on to them, but I also realized that there are NEVER guarantees with anything but that shouldn't keep you from living. Good luck! Kristen

Hi: I don't know the answer to your question. However, I had been taking lexapro for about two years for my POTS symptoms. I finally decided to wwean myself off because I didn't feel it really helped. It especially seemed to contribute to my brain fog. In any case, I HAVE weaned myself off....the weaning/withdrawal process was HORRIBLE...it lasted about 7 weeks....all throughout I considered just getting back on it because I felt so badly. I decided to stick it out after reading up a lot more on lexapro withdrawal and it paid off. I'm really glad I did it. Now that's me....it's highly possible that you DO need it...but I just wanted to point out that weaning/withdrawal does take a while, and it could possibly have been that rather than the POTS that was making you so sick. My doc explained that your brain needs a chance to start building up seratonin on its own after you stop getting that boost artifically with the drug. Anyway....GOOOD LUCK! Do what's best for you. If you are interested in reading more about lexapro withdrawal I would suggest doing a search for "lexapro withdrawal". Kristen

Yes, yes, yes...it all happens to me. I don't necessarily have an "attack" post-freezing...but I do get those symptoms.... When I do feel that way I try to take a shower to warm up....the other day I took 6 showers during thte course of the day just to try to get warm....just be sure you don't get into a steamy room/shower/bath if you are feeling sycope in near! I know how uncomfortable and frustrating it is...I'm sure it must be related to low blood volume. Good luck. Kristen

Hi: Dr. Grubb has recommended it for me as well for over a year now...To date I have not tried it mostly due to the huge cost. However, I am really wanting to do it. He has told me that he has had 80% success with it....and that out of the other 20% ,about 15% couldn't take it due to an allergic reaction...and that only 5% did not have positive results on it. He has said to me that he feels it is the best med out there for POTS and that if it were not so expensive and difficult to administer (injection), he would prescribe it to all of his patients. I am still hoping to begin trials of it soon. I too feel in that desperate place of needing SOMETHING to help. Good luck. Kristen

Hi Everyone: I've been trying to get up the energy to post this because I know you will all understand and I need a boost. I have POTS and EDS. For a week or so I've known that I' was heading for a crash...Well I got there last night. (I am home alone for the next two weeks while my husband is out of town. We are both professional musicians and he travels quite a bit. I tend to stay ccloser to home for work.) Last night I dragged myself to an orchestra rehearsal which was probably my first mistake. I should have called in sick (but I have a concert tomorrow night!). I was feeling extremely weak, shaky, dizzy, the works... I got home around 11 Pm and went straight to bed. A couple of hours later I was dreaming that I was having horrible symptoms. I woke up and it turned out I was. I eventually stabilized somewhat and went back to sleep. A few hours later I was having another dream that I was having horrible symptoms....this time I was fainting as well....At this point I woke up and heard my youngest son who is 3 screaming for me. I guess he had a bad dream and was scared. I was afraid to get up to get him because I knew I might faint. (I am a fainter...even when lying down!) The cries continued so I got up and fell straight down to the floor. I was out cold. When I came to my son was standing over me now REALLY hysterical. Even though I desperately wanted to help him and comfort him, I couldn't move...I felt paralyzed. I tried to move and could not. Eventually I was able to get back into bed and allow him to jump into bed next to me. He seemed ok considering what he had experienced (by the way, he has experienced this before with me...both my kids have) I was not ok. I was a physical and mental wreck. All I could think about was "how am I going to get through tomorrow....and the next day and the next?" I spent much of today in bed...I simply could not get up. My 5 year old was at school for mucvh of the day, but my 3 year old just wandered around the house and played while I was "trapped" in bed. It is the most depressing and scary feeling. Whenever this type fo thing happens I tend to be a mess for several days following at least. I am still quite debilitated from it and I'm worried it will happen again. The worst part is that my husband seems to only be able live in denial about my illness. He is a great guy and loves me very much but he simply can't deal with this. He has had temporary moments of support and understanding, but only after Dr. Grubb has really kicked him in the butt about it. It has been very difficult, and a strain on me (and him, I'm sure). I feel like he has too much faith in me...he takes for granted that I'm going to be ok all the time, and I know that's just not true. I can't take the pressure of his expectations. Sorry to rant....I just needed to put it down in words...I don't expect any magical answers. Right now I feel like a need a hospital....I feel very vulnerable and weak. I don't want to call Dr. Grubb's office because he is so ill (and it's the weekend!) I'm not really sure what to do. I'm contemplating going to the Cleveland Clinic for fluids, but I have to go through the ER for that...that's a nightmare in itself. Oh well, I am going to try to sleep. Thanks for reading. Kristen

Hi Julia: I have EDS and POTS, but was not aware of all the info on EDS....so many of the things mentioned in the document are things I suffer from...I had no idea there was a connection between those things and EDS Thanks so much for the info! kristen

YaaaaaaaaaY! That's such wonderful news. GOOD LUCK! I know the feeling of "how long will this last..."...but take it while you can get it and take one day at a time...don't worry about the next battle until you have to. I'm smiling for you. Kristen

Hi Miriam: I can really relate to your fainting issue. I have had the same experience many times. I agree with everyone that you should be sure to alert the airlines in advance about your trouble and get them on board (so to speak) with the issues you are dealing with....I don't know if you are wheelchair bound. If not, I would recommend it just for conserving energy and keeping your body at a more even physical pace....also, airline people tend to respond a lot better to people who are VISIBLY handicapped in some way....this makes me crazy actually....there are so many of us who are so sick and get the "but you look great!" comment all the time....if they only knew. Also, for me, fluid and blood volume is a huge issue and obstacle....especially when flying....do you have access to a doc or hospital that can "tank you up" with a ton of IV fluids right before you leave...say the day before or the day of? This has made a difference for me. Best of luck! Try to stay positive....I know how scary it is.... By the way, do you wear a medic alert bracelet or carry a letter from your doc about your condition in the event that you do faint and no one is there to speak on your behalf? If not, do it today for your own piece of mind! If you carry a letter, be sure to let the airline attendants know about it BEFOREhand. Best wishes, Kristen

Hi Mary: Sorry I haven't posted lately on your problem(s). My goodness, I can't believe what you are hving to endure. I live in Cleveland and have fantasized about coming to Columbus to rescue you! I'm one of those people who are really good about taking care of everyone except myself too. Unfortunately I am in a bit of a POTShole myself, and my husband is out of town for the next two weeks...I am here alone with my 3 and 5 year old. I really want to help in whatever way I can. Would it be helpful to you to have me contact the Cleveland Clinic about any of this. By now I am a real pro at dealing with docs and hospitals. I DON'T back down. I am very persistent and could possibly get some advice/answers for you. The other thing I would suggest is that if you know someone in NY or Boston, call them and calmly explain to the staff your problem and request a consult over the phone with the doc...this often takes persistence, but it usually can work if you don't give up. They could possibly help suggest a course of action or maybe recommend a doc in your area that you are not familiar with... Just trying to come up with some ideas...please let me know if I can help...I am happy to call the Clinic....I would just need the basic outline of your situation. Hospitals, docs and insurance companies are my specialty....I sort of enjoy the incredible challenge in some weird twisted way. Hugs and good thoughts, Kristen

Hi: I would seriously consider getting off of the beta-blocker. I too am a person who gets VERY slow readingas and very fast readings....I could not tolerate even a tiny a dose of beta-blocker...I fainted constantly while I was on it....and it didn't even seem to stop the racing heart stuff when it was happening. It just made the slow hr and low bp much worse. My current Dr. (Dr. Grubb) has said that many POTS patients are NOT good candidates for beta-blockers...I am one of them...maybe you too??!! What I take right now is MagOx 400 which is a mega dose of magnesium to help with the nervous system function, cerefolin, a high-potency folic acid derivitive for brain fog, and provigil to literally keep my heart going. Lately my condition has swung to the super-slow/low category so I need the provigil just to encourage my heart to beat! I still get the fast stuff, but the provigil, at least for me, doesn't seem to make that part of it any worse...it is what it is. Provigil definitely helps me with the extreme fatigue from the ultra low bp and heart rate. Good luck! There are options out there...I would look beyond the beta blocker...especially since it doesn't seem to be helping you. kristen

Hi: I can't speak about the brain tumor question, but I can say that I DO get very severe headaches that often last several days with no relief. Kristen