Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Hello, My 30 year old daughter who is diagnosed with mitochondrial encephalopathy is in the hospital for the fourth time in four months. She is aggressive and delirious. These attacks seem to come on at the time of her monthly menstrual cycle. The past treatment has been D10 and small amounts of injectable Haldol to calm her down. After 5-7 days she would be better, we would come home, she would have a couple of good weeks and then the cycle would start over again. Her neurologist asked me to inquire if any of you with mito or suspected mito have any experience-good or bad- with DepoProvera. He is considering this as a hope to stop this monthly regression. Thank you, Shelby, a frustrated mito mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Hi Shelby, I have been on Depo for over 7 years with excellent results and no side effects. They put me on it for extremely heavy periods. It is a miracle drug for me. My cycle has stopped as well as the severe PMS and other issues. I am no longer anemic. I would not go off it if you paid me. We were originally worried about it because of the mito (I have possible Kearns Sayre and definite problems in Complexes 1,3,4,5) but decided it was worth the try. Your daughter's problems seem different than mine so I don't know if this is the answer. I just wanted you to know my experience. I hope you find something that works. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Dear Shelby, I'm not much of a mito expert, but i did work in gynecology for a long time. Depoprovera helps many people with problems directly associated with their periods. I have no idea really if it would help yur daughter but it sounds like it might be worth a try. Good luck to you both, Celia > Hello, > My 30 year old daughter who is diagnosed with mitochondrial > encephalopathy is in the hospital for the fourth time in four months. > She is aggressive and delirious. These attacks seem to come on at the > time of her monthly menstrual cycle. The past treatment has been D10 > and small amounts of injectable Haldol to calm her down. After 5-7 > days she would be better, we would come home, she would have a couple > of good weeks and then the cycle would start over again. Her > neurologist asked me to inquire if any of you with mito or suspected > mito have any experience-good or bad- with DepoProvera. He is > considering this as a hope to stop this monthly regression. > Thank you, Shelby, a frustrated mito mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Shelby, Sorry I don't have experience with depoprovera. I can say that I had massive bouts with PMS before I had my hysterectomy. I have COX syndrome. I am being treated for depression also. Therapy with a psychologist helps me deal with daily life a whole lot better. Hope this helps. Betsy Help is needed > Hello, > My 30 year old daughter who is diagnosed with mitochondrial > encephalopathy is in the hospital for the fourth time in four months. > She is aggressive and delirious. These attacks seem to come on at the > time of her monthly menstrual cycle. The past treatment has been D10 > and small amounts of injectable Haldol to calm her down. After 5-7 > days she would be better, we would come home, she would have a couple > of good weeks and then the cycle would start over again. Her > neurologist asked me to inquire if any of you with mito or suspected > mito have any experience-good or bad- with DepoProvera. He is > considering this as a hope to stop this monthly regression. > Thank you, Shelby, a frustrated mito mom > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Shelby, My daughter Cindy is here and just read this. She will respond when she gets home because this is very important to her. It's not going to be positive about Depo Provera. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 ---I had taken the pill without the placebo to avoid my periods. i do not remmember have bad bouts of PMS. I quit doing it and now I am have major psychologically problems before and during my period. Not as svere as your daughters. It is worth a try. It sounds like you all are going through a very difficult time. I am going to go back on the pill and see what happens. Physically I feel better not on it, but that is not the case emotionally Keeps us posted. Dawn a In , " cghng888 " wrote: > Dear Shelby, I'm not much of a mito expert, but i did work in > gynecology for a long time. Depoprovera helps many people with > problems directly associated with their periods. I have no idea really > if it would help yur daughter but it sounds like it might be worth a > try. Good luck to you both, Celia > > > > Hello, > > My 30 year old daughter who is diagnosed with mitochondrial > > encephalopathy is in the hospital for the fourth time in four months. > > She is aggressive and delirious. These attacks seem to come on at the > > time of her monthly menstrual cycle. The past treatment has been D10 > > and small amounts of injectable Haldol to calm her down. After 5-7 > > days she would be better, we would come home, she would have a couple > > of good weeks and then the cycle would start over again. Her > > neurologist asked me to inquire if any of you with mito or suspected > > mito have any experience-good or bad- with DepoProvera. He is > > considering this as a hope to stop this monthly regression. > > Thank you, Shelby, a frustrated mito mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Hello-- I had a very negative experience with Depo Provera, but we are all individual and respond differently. It may help your daughter. Barbara > Hello, > My 30 year old daughter who is diagnosed with mitochondrial > encephalopathy is in the hospital for the fourth time in four months. > She is aggressive and delirious. These attacks seem to come on at the > time of her monthly menstrual cycle. The past treatment has been D10 > and small amounts of injectable Haldol to calm her down. After 5- 7 > days she would be better, we would come home, she would have a couple > of good weeks and then the cycle would start over again. Her > neurologist asked me to inquire if any of you with mito or suspected > mito have any experience-good or bad- with DepoProvera. He is > considering this as a hope to stop this monthly regression. > Thank you, Shelby, a frustrated mito mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Hi Shelby, My name is Cindy and I am Alice's daughter. She wrote earlier saying I'd write to you regarding Depo Provera. First I need to tell you that nothing I say about it is going to be positive and I am typically a pretty upbeat person. I went on the DP shot when I was 24 years old. From almost day one I had horrible mood swings. I gained around 75 pounds on it....... weight gain can be more or less, but many I have talked to say around 50-75 pounds. I felt horrible, had horrible migraines, my body ached almost constantly, got very depressed very quickly, didn't have a period until after the birth of my son 3 years later even though I was only on it for a year, grew hair in abnormal places, chronic respiratory infections even after I went off of it (not sure if it's related but I think it might be). I am sure this won't impact your decision at all but I also gave birth to a child with multiple congenital defects after the Depo Shot. I have since spoken to other ladies who gave birth after the shot and gave birth to children very similar to my sweetie. Dr. Cohen has said on numerous occasions that hormonal birth control is not the way to go for patients with Mito. I also haven't been able to take other types of hormonal birth control. I beg you to do as much research as you can before you agree to putting your daughter on this med. Here is a website I'd like you to look at to get some info on side effects of it. http://www.abcinternetmarketing.com/depo-provera/ IF you have more questions PLEASE e-mail me privately. I would love to talk more about it if you need to. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 I just started the depo provera in January after 2 rounds of the Norplant, 10 years. Before that I had the first depo proera shot after my son was born 11 years ago. I am now 42 with mild symptoms, mainly exhaustion and blood sugar that goes up when I exercise. I talked to a nurse practioner about the different methods at the beginning of this month. The Norplant was taken off the market because I guess it was not effective in some studies. The Norplant and Depo Prevea both surpress ovalation I believe. The pill and patch just have hormones that are birth control and you still get your period. I had no problems with the Norplant although it came with a long list of possible side effects. I decided to try the Depo shot because with it you do not get your menstrual cycle although you can get break thru bleeding. The biggest problem for me is that one of the side effects is weight gain. I have gained 20 lbs since January. Some of this may be due to the new temp position I got in April where I get hungary a lot and am munching, but I think some of it is due to the depo shot. I talked to the np about this and she said it may level off or I may continue to gain weight, she has seen women due both. My next shot is due in November and I think I will get it again, even with the weight gain. When I was having ,monthly periods they were often for 3 weeks and heavy. The pain was very bad. After experiencing child birth, I can tell you that they were nearly as bad. In fact, I did not need any pain meds for the labor until the last 1/2 hour when my son got his head stuck. The pains were only a little worse than the menstrual cramps I was used to. So, I would try it if I were your daughter. The only concern I would have is that it needs 3 months to wear off. Janet Sample Re: Help is needed > Hello-- > > I had a very negative experience with Depo Provera, but we are all > individual and respond differently. It may help your daughter. > > Barbara > > > > > Hello, > > My 30 year old daughter who is diagnosed with mitochondrial > > encephalopathy is in the hospital for the fourth time in four > months. > > She is aggressive and delirious. These attacks seem to come on at > the > > time of her monthly menstrual cycle. The past treatment has been > D10 > > and small amounts of injectable Haldol to calm her down. After 5- > 7 > > days she would be better, we would come home, she would have a > couple > > of good weeks and then the cycle would start over again. Her > > neurologist asked me to inquire if any of you with mito or > suspected > > mito have any experience-good or bad- with DepoProvera. He is > > considering this as a hope to stop this monthly regression. > > Thank you, Shelby, a frustrated mito mom > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
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