mindylee1

Hang in there Julie. I know just writing that felt good for you. Sometimes I wish I had a padded room in my house where I could go when I am angry an just punch the walls... but my luck I would still find a way to hurt myself. You know what is so off about what we are going through.. it the face that these up and down cycles of strength and anger, or courage and depression are every other day. What I mean is one day I can be so full of courage.."We will beat this thing, if it's the last thing we do." And I will really feel unstoppable. But the very next day I am curled up in a ball crying wondering if the pain and misery will ever end. Let's face it our bodys have no clue what is goin on with all of these meds we are on...esp those SSRI. And boy if I miss those watch out. Julie you are in my thoughts and prayers, as is every single member on this site. I'm still not sure of my path in life, I am able to finally say that I have become a better person because of this. That may sound crazy but Im sure some of you know what I mean. Someone that really takes every moment and everyone for what they are worth. My husband and I were talking about the support group tonight and I told him that now that I am back here with you all I don't know how on earth I lived with out it. I know that when I am at the doctor everytime it will be my mission not only to seek help for myself but for everyone here. Reading your e-mail Julie made me cry, You sounded so much like me, just raging because you are sick and tired of being sick and tired. I fully agree with you about Dr. Davis. His card has been in my wallet for a long time now. I guess I feel as you do, I'm scared to let it all out, because when I do I don't think I'll be albe to stop. But I think there is no better time then now, because it will only continue to build. Best of luck to you come here to vent whenever you need it. Mindy

After 2 years of this insane naseua and vomitting, They finally dx me at Cleveland with CVS. I've been on everything you name it..Zofan, Phenergan....ect. Well On tues we are starting at home Iv treatments once a week of Anzemet and fluids. I have recently been on the ancement pills and no luck. I am excited about this for two reasons 1. hopefully on a weekly regimen this may actually stay in my system 2. Bring on the fluids!!!! But I've never had Anzemet in IV.. has anyone?? I'm really having some complications with all this vomitting. I've been on Coummidin for a year now due to my blood clots and I've been vomitting so much that there is often blood. I get really worried that if I can see it, what is going on on the inside of me. It has to be tearing me up. Any advice would be great thanks mindy

Hello Dr. just put me on melatonin as a sleep aid. Has anyone ever been on this?? The label says do not take if you have an autoimmune difficency. I'm wondering why he put me on this since I do have an autoimm dif?? any suggestions Thanks Mindy Ps It's a beautiful day out here and hopefully not so hot today. I hope you all can enjoy a bit of the outside for the holiday weekend. Happy 4th

Lisa, I have the same thing. The ringing only in one side (left) loss of hearing, and no depth perception on my left side. I constantly run into things (ie walls..) on the left side. Well I have a new doctor - Otoneurologist - Dizzy doctor (Dr. Neil Cherian) at the Cleveland Clinic--- he is absolutely amazing!!! It turns out that many many many pots patients have problems with their C1 disc in their neck which causes these problems. Dr. Cherian works with a PT Kay Neidermeier ( who works with pots patients) They are working on the relationship of the C1 disc to some of our symptoms. My C1 is rotated to the right almost 90degrees. They are not sure why. This has caused other disc problems as well. I saw her for the first time on Monday and spent almost 2 hours with her. I have to go every month or 2times a month for therapy, which will be difficult because I live almost 3 hours away. But they really feel that it is in our best intrest to go through the therapy there, due to the fact that they have tried to send me elsewhere and nobody seems to understand our bodies like they do. Don't ignore your symptoms...anytime someting new happens pay close attention to it. I am 27 and have figured what some never figure out in a lifetime and that is "The Doctors work for YOU." You know your body better than anyone, and especially with all of the time we have on our hands, we learn to pay closer attention to what is happening daily to us. Hope this helps you a bit. Let me know if you have any questions about I can go into more detail for you. Best of luck Mindy

Tearose, So glad to hear that you are feeling well. Not only feeling well but really listening to the doctors and your body and taking care of yourself. That is so important. It's so difficult to realize that we do need to rest often and require energy points that can only be spent a bit at a time. So proud of you. I am concerened about you looking for a job. Do you think that you are well enough to commit yourself? We all require such special care and understanding people around us and that is often so hard to find. I do think that if you do find a job you should let them know your condition because you really don't want to work with people that are not supportive of what you are going through or have gone through..ya know. Maybe the best way to do this is to use any connections you have. Talk to friends or family that know your situation and they can help you possibly find something working where they do or for someone that that they know. However it may be Just keep taking care of yourself and best wishes Mindy

Hello all, Finally have a working computer and am able to get to it. Boy have I needed you. I really didn't realize how much you helped me until I was without you for 5 months. It's been an awful fiv emonths. I wish I could say that things were better but they are worse. In the past few months the problems with the blood clots have gotten worse. the have placed an IVC filter in my abdomen to block the clots from my lungs and just put in 5 stents in my left leg to open blood flow. Still can't find a reason for the clotting... it's a mystery. This has really limited my mobility. I'm in so much pain in my legs. The wheelchair helps when we go out. The POTS is just uncontrollable. I just got back from cleveland yesterday. We have exhausted our medication options, so they are just pushing them harder. I don't know how much more Effexor I can take before I blow up.. ya know. The dizzy doctor says that I have suffered somekind of partial paralysis during surgery and my C1 in my neck is completely rotated. Six Discs in my back are sprained. I am seeing a PT to help bring back the feeling in my hands and hearing etc. It sounds like lots of POTS patients experience problems with the C1... hand numbness running into walls, lip tingling... if so DON"T ignore it, You're not going crazy after all. It's just been one thing after another lately. So depressing and having such a hard time dealing with all of this. But I am so greatful I can get to you now because I need it. I'm filing for SSD for that alone has been so stressful. It makes me want to cry because I just don't want to do it. I'm to young. I know that my bad days far out weight my good, and I would never be reliable but I hate the thought that being here could be final. Well I am glad to be back. I see alot of new screen names.. hope to help you soon. My thoughts are with you Missed you Mindy

Hello all, Back from the cleveland clinic and some bad news. Thye have found another blood clot in my leg. They have no idea why this is happening. As far as my blood work goes I have no issues that would lead to clotting. This is the second one in five months. It is really making life difficult. The pain is just awful. They did say that the pain is due to the amount of damage that the clot has done to my valves. Now I know that we have talked about pots and clots--(ha that rhymes) and there is no found connection, but isnt this a bit strange?? Any ideas or suggestions? What do your doctors say about this. Smile today Mindy

Stacey, I am praying for your father and family. May you have strenght during this difficult time. Mindy

Julie, Glad to hear your appt went well. It's so good to see that you take such an active role in understanding and researching your condition. Lets face it sometimes we need to keep those doctors in line and let them know that we are smart cookies too! Best wishes Mindy

Tea Rose, Thank you so much for your always encouraging words to all of us. We are switching internet providers so will be a month until we have service again. I will try to get to my mothers to use the computer. As far as myself, I returned home from Clevelanc Clinic last week. Some good, some bad. The good part is that they really take such good care of you there. My doctor - Dr. Stillman was always by my side. They played around with my meds. Took me off florinef. Sent me home with a heart monitor for a month. It is so annoying but everytime I have a spell I just press record. I guess my heart rate gets pretty low at times. So they may want to do a pacemaker? I havent really done any research on that yet. The bad news is that they found another blood clot in my leg. They have done all of the necessary bloodwork and I am not prone to clotting. So why is this happening?? I had them puzzled. I have so much pain in that leg and there is reeally not much they can do for it. I refuse narcotics, I don't need to be down more than I am..ya know. With being on the coummidin there are only so many medication options. I really do wonder if this all could be related to the pots in some way. They just are not sure. Thank you for your support. Nina and Emily, take time to heal. All of our thoughts and healing wishes are with you. Mindy

Hello all, Well I'm back from my stay at the Cleveland Clinic. They kept me for four days. Dr. Stillman had admitted me to observe my spells and mess around with my medications a bit. While I was there he wanted to vascular team to take a look at the blood clot in my leg that I got in August. Well they found a new clot in my groin area. I was so upset. They said that it is common once you get a clot to get another due to the damage in that area. When he said he wanted his vascular team to work with me he really ment it. I hav seven doctors to work with. They were great. As far as the POTS he took me off florinef and mestinon. He also sent me home with the "king of hearts" and heart monitor that I wear for a month. I just press record when I am having a spell. I was so greatful for this. I tell you what the care that I have recieved there is just amazing. I feel like my relationship with Dr. Stillman is on another level now. He truly cares about me. The monitor works well. I have had 4 spells in the last two days. I guess when these spells come on my heart rate drops very low. Does this happen to anyone else? If so what have they done for it. Aside for having another clot the stay went well. I guess it's just another bump in the road Mindy

In August I suffered from a bad clot in my left leg. The clot goes from my knee to my groin. It created a great deal of damage. I am still having pain and swelling. They are still doing a bunch of tests, but they think it could be POTS related...not sure yet. There are many articles that will say that POTS patients are not likely to get clots.. but its still left for discussion

Hi Ladies, I understand your situation. However I am a patient of Dr. Grubb and Dr. Stillman (Clevand Clinic - head of neurology) There is no back up. They both work together to treat me. I consider them "my team" I would highly highly highly reccomend Dr. Stillman he is a wonderful doctor. He, is unbelieveably smart and truly cares about me. He has called me 3 times this week to to check in my progress. I leave for Cleveland tomorrow. I will be in the hospital for about a week. The reason was that I told Dr Stillman that I wanted him to admit me. I want him to see my spells, and give me any kind of test that he can. He also said this was a good idea. Now not many doctors would do this. He is the head of neurology and worked with Dr Fouad (Cleveland Clinic- syncope clinic) on my diagnosis. So I would tell you that there are quite a few good doctors at the clinic. Also don't consider it a back up. Consider it as "your team" . The more talented people on your side, the better off you will be. Best of luck Mindy

Thank you all for your responses. Today is the end ... no more effexor. It's been awfful. All I have done for three days is cry. I guess it's better than screaming. I guess we will see in a few days how it goes. Emily, I just want you to know that I always look forward to your responses. You are so sweet and provide such encouragement. Thank You. Mindy

Ok, I guess I will be admitted to Cleveland sometime next week. Just talked to Dr Stillman. He said that they were going to p[lay around with my meds. I asked what if we stop them all and start over. He said that he may do that. Has anyone ever done this???? I'm on 25 pills a day. What happens if I go off of them?? I know we all have wondered what kind of effect that would have on us. Any Advice?? Also went to see my dr yesterday about the blood clot in my leg. It's still bad, pain swelling. One leg is 5 inches bigger than the other. She really thinks it in some way could be related to the pots. So I talked to Dr stillman about it and he said we will do some more testing. You see they say that I am not geneticly pron to cloting but they think it could be a dysfunction in my blood vessles... and then with the pooling... there is not enough room for movement. What next???!!! I had a nice long crying spell yesterday. Sometimes you need that. I just feel so old. I have the same alments as my grandmothers friends. I mean thats ok, I can handle it but sometimes I just want it to reverse back to when I was healthy. I want to know whats in store for the future, will it all get worse?? So sorry for rambling. Mindy