Broken_Shell

Hi Rene, Hugs, Hugs, Hugs! I am so sorry for what you experienced today... they say "when it rains, it pours". I hope that you can get everything with your medicare worked out. I know first hand that talking to them is like talking to a carpet fiber or something. I thought my other insurance customer service representatives were awful, but medicare representatives take it to a whole new level of uninformed and unhelpful, at least from my personal experience. Regarding your ex and the financial issues, think positively that at the very least the marriage is over and you don't have the stress of an unhealthy relationship anymore. I wish I knew what to say about the cardiologists and d-dimer level, but gosh honey, all I can offer is support. It is just too bad that you not only have to fight for your health, but deal with office politics at the cardiologist as well. I know that the d-dimer has been high in the past, but better get it investigated with yet another V/Q scan. So, go ahead... vent.... cry... we are all here with you and for you! ~ Michelle

I agree... wearing headphones with soothing or sensual music can help take you away to a better place for a little while.

Hi, I have been having more and more problems being upright for more than 5 minutes at a time, and I have decided that it is time to give a good trial to midodrine. I took 1.25 mg this am, and got really strange feeling afterwards. I have so many problems with medications, and i am both scared to take it and scared of how I am feeling more and more of the time. It also seems like the couple times I have tried a pill of midrodine that it makes me get more bowel movements and intestinal cramping. Has anyone noticed this either? (I am worried about this because GI activity is a huge trigger for my autonomic system to go crazy). I would appreciate it if anyone who has had either good or bad experiences with midodrine could tell me about them. I need some advice and peace of mind because I know many people on the forum use this medication. Thank you in advance. ~ Broken_Shell

Sorry to hear that you are still struggling... I am in the same boat, so at least you can smile a little knowing that you have company. If you are a spiritual person, perhaps reading the Bible or a book on faith in difficult times would help you. I personally find comfort in the promise made in the poem "Footprints In The Sand." Other than that, I enjoy having someone gently rub my feet or play with my hair while I am laying down. Or I lay in bed with candle light and listen to music and do my best to convince myself that this is just all a bad dream. Hang in there Suzy and don't give up! I will be praying for you. ~ Michelle (Broken_Shell )

Hi Maxine, I have only had 3 CT scans, but at least 15 MRI's, and too many x-rays to count, along with several barium studies. I am 27 and have been affected since age 20, and I feel as though I have been exposed to so much that if I wasn't high risk to develop cancer, then I certainely am now. Plus, I've been on various hormone replacement therapies for the past 5 years as well. That's the ironic part about being unhealthy... it sets you up for more problems! That being said, I have only had 2 regular colonoscopies and am not that familiar with the virtual option. I would definately suggest that you have some type of colonoscopy though, as it is a very important screening. Maybe you could talk to the doctor that manages your spinal instability and get his take or ask what expereince he has had with their other patient with problems similar to yours needing more invasive procedures completed. Have you had any past expereinces with conscious sedation or other similar procedures? Best wishes with your decision and screening. ~ Broken_Shell

Hi, I understand completely. I wish I knew someone else with this condition with whom I could have more personal contact. All of my friends are healthy with normal lives and it is hard for them to imagine what I go through every day. They are polite and keep in touch every now and then, but I often feel forgotten and our friendships are more casual and formal than they ever were before I developed this condition. I have gone twice... well, attempted to go twice - didn't feel well enough to stay the entire meeting either time... to a local autonomic dysfunction support group that I found out about. It looks like all of the members are in there 40's or older, where I am 27 years old, and none of them appeared to be feeling unwell, so I am not yet sure how much I will benefit from the group. Most days I don't feel well enough to interact with friends on any normal level, but it would still be nice to know someone else who could appreciate first hand the struggle that many of us go through just to survive each day. ~ Broken_Shell

Hi, If I sit up or stand my feet are either blotchy red or purple. It corrects to a normal color when I lay down. I have wondered the same thing because I think that based on the symptoms I get I experience inappropriate blood pooling in my GI tract and other places, but I don't know if there is a definitive way to verify this. I do often have a blotchy purple or red pattern on my abdomen though, similar to my feet. ~ Broekn_Shell

Thank you for correcting your error on the MOA. When I read your post I wanted to say something about your error, but I didn't want to be rude... and I also didn't feel well enough to type at the time. As I have mentioned before, my formal education is in pharmacy and medicine, and when I read your post my intellectual brain went "Oh no, no, no. Where did he get that from?" Take care, Broken_Shell

Wow! I am happy for you. I was given a neck brace but haven't worn it yet because I am afraid it will make my neck muscle spams worse. Maybe I should give it a try after all. I just had another C-spine MRI, so we'll see what that showed. How was your CCI diagnosed? Image study or physical exam? Thanks! ~ Broken_Shell

Hi Everyone, This past week I went to see a mitochondrial specialist about my symptoms and the mutations found in my mitochondrial genetic testing. Here are a few links that those of you who posted before me asking about symptoms might find interesting. Notice that autonomic dysfunction is a symptom of a mitochondrial disease. http ://my.clevelandclinic.org/disorders/Mi...l_Disease.aspx http://my.clevelandclinic.org/disorders/Mi...l_Diseases.aspx http://my.clevelandclinic.org/disorders/Mi..._Resources.aspx http://www.umdf.org/site/c.dnJEKLNqFoG/b.3...k.BF32/Home.htm (The mitochondrial disease handbook on this site is especially informative about symptoms and treatment). Good luck to everyone! ~ Broken_Shell

Hi, I don't have facial tingling after eating, but have experienced facial flushing and dizziness from eating. I think that if blood is being inappropriately shunted from your skin and your head to your GI tract when you eat, this could be the cause of your facial tingling. Does this happen everytime you eat? Have you noticed if it is related with larger meals or certain foods? ~ Broken_Shell

Hi Dizzy Girl, I am so sorry for what you are going through! I have to tell you though that in the past year and a half I have developed GI symptoms that fluctuate with hormone fluctuations, mostly nausea and diarrhea. For the past few months, I have been trying to find a hormone regimen that will shut my hormone cycles and bleeding off, but have had a lot of problems with bleeding to the point that I was in the ER getting fluids and had such a drop in my hemoglobin that there was talk about a blood transfussion! However, the incredibly frustrating thing is that being on combination estrogen and progestin therapy DID stop the GI flares. With all of the bleeding, I have had to change hormone doses and regimens a lot to try and get the bleeding under control, and every time I make an incremental "cyclical" change in hormone levels, I am getting the GI symptoms back again. Promising and frustrating at the same time! I haven't found any hormones that agree with my body in terms of keeping the bleeding under wraps yet, but I will keep hunting if it means keeping the GI flares at a minimum. Good luck to you... maybe talk to your OB/GYN about hormone therapies if you'd like to try and shut down your cycle to see if it makes an impact on your symptoms. ~ Broken_Shell

Hi Alicia, Yes, these types of problems are common since the GI system is controlled by the autonomic nervous system. I have had from severe constipation for several years to bouts of excessive bowel frequency and nausea. All of my other autonomic symptoms are worse related to GI function - bowel movements and eating, etc. I think that there have been many posts on this in the past if you want to browse the archives! ~ Broken_Shell

Oh my goodness, Jump! I understand completely... you have described exactly what I feel on a daily basis! I experience this in waves with the same disorientation and momentary feeling of "blacking out" that you described. I feel it most strongly when I am standing, but it also occurs when I'm sitting. I have many ways to describe what it feels like, but it is as though my body is suddenly falling, gliding, tipping, or shifting, or that this is happening with the floor or chair under me. I often do what I call "bracing" against it where I tighten up my body to "brace" in opposition to this sensation. I have told this to numerous doctors, but no one evers knows what to say about it. I'm not sure if it is related to a momentary drop in cerebral perfusion. I also have severe myofascial problems in my neck and head, so I have considered that these proprioreceptive disturbances may be related to that. I have mentioned on the forum in the past that I get craniosacral therapy done, and the practioners have implied that these sensations may be attributed to imbalances in my CSF flow and the rhythm of my cranial bones. I am sorry that you are experiencing this, and I wish that I could be of more help. However, I can say that I completely understand and I hope these episodes pass quickly. How long have you been experiencing them? Have you measured your blood pressure when they are occuring? Feel free to PM me if I can offer you any other information or support. Broken Shell

Wonderful news! I hope it continues to help... enjoy yourself but don't overdue it ~ Broken_Shell

Hi Jennifer, I read your post and just went, "ugh! shame on those doctors!" I have had similar experiences, and I wish I could offer you good advice. Here is what is really frustrating... we go to doctors because we don't feel well. We all wish that we could just stop going and feel better, but that is not happening right now. Doctors are not gods and they do not have all the answers. If someone had the answer and offered you treatment that helped, you won't need to continue seeing other specialists. Doctors work for patients, and especially when dealing with educated patients, they are there to offer guidance and suggestions. No doctor should be so sure of himself as to be offended when a patient seeks another opinion, or a 10th opinion for that matter! Many doctors get irritated that I have seen many specialists and gotten many opinions, but if someone along the way had known what was going on and how to help me, I would have stopped after the first doctor. Getting multiple opinions does not make us "bad patients" or "hypochondriacs" or "complainers" or anything along those lines. If those doctors were put in your shoes, they would probably do the exact same thing, and it is too bad that they fail to recognize this! I want to suggest getting another opinion, but that is probably not feasible. Are the doctors offering you different treatment options that are noninvasive? Is it possible for you to try the different options sequentially on your own to determine what seems to work and which doctor it would be most fruitful to follow with? Do you have a good primary doctor? What does he or she think about all of us? I wish I could offer you more direction, but I will keep you in my thoughts and prayers that you will have wisdom and guidance to make the best decision. ~ Michelle

Hi Alicia, Many of us understand all too well. I try medications in good faith and think positively, but my body tends to reject nearly all of them, no matter how benign they are or how small the dose. I do have a couple of suggestions that help me.... I try to use topical medications in place of oral whenever possible. I also try things at very, very tiny doses... literally 1/8 to 1/6 of a the smallest dose of a pill. If it's a capsule, open it up and pour some of the contents out, and then reseal the capsule to take the smaller dose. I am sorry for your frustration and struggles. I wish I could be off more help, but it's a rough situation trying to find a balance and things that are tolerable and acceptable for our bodies! ~ Broken_Shell

Hi Steph, I am not sure how I missed your post because this is a huge issue for me right now. It is a long story, so I won't subject you to it, but let's just say I am also looking for something to suppress menstruation and hormone fluctuations for several reasons. Do a search under "birth control". There are quite a few posts from the past years. My doctor did tell me at my appoinntment on Monday that if we don't get any resolution in the next year then we will start to give serious thought to a hysterectomy. Good luck. PM me if you find something that does or does not work for you. I'll do the same! ~ Broken_Shell

Hello, For those of you who take midodrine or have tried it in the past.... What types of side effects did you experience? Did the side effects go away with continued treatment or get worse? Did you develop a tolerance to the positive effects of the drug or have to increase the dose to get the same benefit? I am asking because I tried only 1.25 mg this morning and have a lot of stomach pain. I am feeling discouraged and need to hear some feedback since I know a lot of people here either use this medication or have tried it. Thank you. ~ Broken_Shell

One more thing... those of you whose doctors "believe" in light-headedness and cerebral hypoperfussion with normal peripheral blood pressure, have they offered you any treatment that has helped? Specifically, have you been helped by midodrine or florinef? Thank you again for your replies! ~ Broken_Shell

Thank you for your thoughts. Are there currently centers or tests in the US to evaluate which of these mechanisms is causing the symptoms? I know that you are in Australia and perhaps have more extensive testing available than we do here. By the way, I love reading your replies... I really miss the medical education that I had to leave and it helps keep my brain thinking. ~ Broken_Shell

Hi To All The Ladies, I know we have nearly discussed the topic to death, but I can not handle menstrual periods. I have tried low dose combination hormone therapy since April with nearly constant bleeding that has given my RBC count and H&H quite a hit and even landed me in the ER for fluids to bring up my blood volume several times. It is time to try something new and my doctor suggests that I try a birth control patch, ring, or pill option. I tried a pill in the past several years ago and it made me feel so jittery and anxious and sent my body for quite a loop, but I think I need to give it a try again anyways because I need someway to stop my body from cycling hormones and bleeding. So... if you have had either a good or bad experience with one of these methods or one of the may birth control pills (or ring or patch) can you please respond? Thank you! ~ Broken_Shell

Hello, I am wondering if anyone can share thoughts or experiences... I often feel light-headed and like there is not enough blood going to my head, but my peripheral BP meaures in a normal range. Do others frequently experience this as well? Any ideas what causes it or how to help it? Thank you kindly. ~ Broken_Shell

Hi, After reading your post I have decided to get another hemotology opinion. The doctors I have seen all seem to think that low ferritin can only cause symptoms if it leads to actual anemia. However, ferritin is involved in a lot of processes and reactions in the body, and I personally believe that it is feasible to think that it could lead to problems with fatigue, myofascial pain, dizziness, etc. I am prone to constipation, and since iron can cause constipation and GI issues, the supplements were just too much for my body. I would really like to try IV iron to see if it would make me feel better in general to get my ferritin level up to normal, but since I am so sensitive to everything and would likely have some bizarre adverse reaction, I am afraid that I will make more problems by going ahead with it. It is on my agenda to think about during the summer months, and I am going to set up an appointment to get another opinion on whether or not the low ferritin levels could be related to my other symptoms. I will let you know if anything comes of my pursuit for answers! Please keep me updated as well. ~ Broken_Shell

Hi, Several bad days of being barely able to move or stand up aggravates my already severe myofascial pain as well. I don't have many good suggestions, but have you tried gentle movements while laying down or stretching while laying down? Simple movements like flexing your legs, rolling your ankles, bending your arms, etc. might help some. ~ Broken_Shell