Broken_Shell

Hi Jan, What wonderful news! I am SO happy for you. Can I ask the name of the doctor and what clinic he is with? Thank you! ~ Michelle (Broken_Shell)

Yes, I feel like I get short of breath or can't quite get my breath after eating. It is worse on days that my other autonomic symptoms are worse. I am glad to know others experience the same thing. ~ Broken_Shell

Hello and welcome to the forum! I am sorry for what you have been going through for the past 15 years. It sounds as though you may certainly have dysautonomia. My condition was also triggered by a viral infection when I was 20 years old. I hope that the forum will provide you with a lot of support and suggestions. Good luck finding a doctor. What area of the country are you in? Do you have a good primary doctor to work with? Just keep in mind that many doctors are unfamiliar with this condition and the extent of its manifestations, so if you see one specialist and are not satisfied don't hesitate to ask questions and seek another opinion. Best wishes, Broken_Shell

Hi, My ferritin is 2 and has been very low for years... the highest it has ever been has been in the last seven years has been 5. I also tend to not be anemic, although it is difficult to judge sometimes because on blood work I appear to be chronically dehydrated. However, I am unable to tolerate oral iron supplements - I ended up in the urgent care twice with a bowel impaction, even when I only took one iron pill every other day. My doctors have entertained the idea of giving me intravenous iron infusions, but we have never gone ahead and done so because all of the way my body reacts everything and the high incidence of reactions to IV iron. I even consulted a hematologist to get his opinion as to whether the low ferritin level could be related to any of my other symptoms, but he did not feel strongly that it was. The main problem that I have with the low ferritin is that since I have no iron stores, I cannot tolerate bleeding of any sort, including monthly periods. Recently I have been trying different hormone options to shut off my monthly cycles, but they have resulted instead in episodes of heavy bleeding. I was in the hospital twice within a week until we could get the bleeding under control because my hemoglobin had dropped from 14 to 10 within four days and I was extremely weak and short of breath and could barely sit up. Please let me know if you find any good information connecting low ferritin levels to either symptoms of dysautonomia or myofascial and muscular problems, or if you find a helpful treatment that improves your symptoms. Have you had any other iron studies run? Best wishes, Broken_Shell

Hi, I had a few patches of rash on my chest. When I saw a dermatologist, he said it was a type of seborrhea commonly seen in people with neurological conditions. It cleared up with topical prescription steriod cream. ~ Broken_Shell

Hi Radha, Just a thought... have you tried eating smaller meals so that there is less shunting of blood and resources to your GI tract when you eat? I have had some success with this. I used to eat large meals and would get very dizzy, shaky, and flushed from eating. Take care and hang in there! ~ Broken_Shell

Hi, I also adjust and try medications in ways that my body can tolerate and I feel comfortable doing. I know this can be frustrating for physicians and family members, but remember that dysautonomia is not a "textbook" condition, and it can't be managed like one. There is no evidence that if we take this or that medication at this or that dose then we will have the best health outcomes and least amount of symptoms, the way there are in other conditions. Besides, many of us are exquisitly sensitive to meds, and only we know what we feel and how our bodies react to things. It's better to give something a modified try than to not try it at all. I feel comfortable self-managing and self-trying medications because my formal education is in pharmacy and medicine, but I think that it is best to be honest with your doctor and communicate your concerns. Maybe when you start a new medication, explain your sensitivity to medications, and ask them if it is safe for you to start at a lower dose or play around with the doses. If it's not going to harm you, then they should be willing to work with you to find something that you tolerate that will give you the best quality of life. ~ Broken_Shell

Hi Brye, I am in Wisconsin and see doctors at Froedtert. I was diagnosed by Dr. Barboi, have been consulted by Dr. Jaradeh, and am followed by Dr. Peltier. You can see information about them on www.froedtert.com under doctor search. Overall, I think the doctors are understanding and have a fairly strong background in dysautonomia. I believe there is usually a wait of several months to get into the clinic, so perhaps you could have your current doctor send your records for review. If you are from Arizona, they may be willing be look them over ahead of time and let you know if they would have anything different to offer you than the treatments you have been receiving. Please feel free to PM me if I can provide you with any other information. ~ Broken_Shell

Suzy, Oh how my hugs and prayers are with you! I know it doesn't make it much better, but we all understand what you are going through - physically and mentally, and we are holding you in our hearts and thoughts. Have you been able to keep anything down yet? Do you have any anti-nausea medicines that help you? Have you tried adjusting any of the meds that you can tolerate? Do you have a doctor that you can talk to about a brief inpatient admit just to get some fluids in you? Do you have a good support person or primary doctor to start with? Please keep letting us know how you are doing. Hang in there, but if you can't let us all be there to catch you if you have to fall. ~ Michelle

Hi, I can tell you that I have seen my mother and her significant other give up large portions of their lives to care for me. It makes me cry to think about everything they have sacrificed and all the love they have shown me. The same goes for several good friends who have stood by me and continue to call and offer to come sit and talk with me or give me rides to appointments when they can. ~ Broken_Shell

I don't experience a feeling of falling asleep, but I do have a light-headed type of feeling that I get that is different than a feeling that I am going to pass out. I can best describe it as feeling woozy, drunk, and like there is not enough blood getting to my head for me to feel "normal", but it is not a feeling like I will pass out. ~ Broken_Shell

I am so sorry for what you and your fiancee are going through. I send you hugs, prayers, and the strength to face whatever trials come your way. It breaks my heart that I am unable to care for my mother, who is my main caregiver, and my grandparents as they face major medical problems themselves. However, we must remember that even though we may not be able to be there physically, our emotional support means so much to the people we care about. ~ Broken_Shell

Thank you for sharing your experiences and thoughts. I feel the same way, as I am sure others on the forum do. Even though we look "healthy", it is important to remember that it is easy for others to misjudge us. I think I may have mentioned this in the past, but I had a professor once who used to say "to assume is to make an *** out of u and me". At least our experiences can help us not to make judgements and assumptions about others. ~ Broken Shell

Both massages and acupuncture make me feel worse. They cause me to feel more woozy, experience autonomic symptoms, and make my myofacial problems worse. Rather than relaxing my muscles, massage causes me to go into worse muscle spasms. I also have problems with severe heat intolerance. The only type of therapy that I have been able to tolerate and have found somewhat helpful is gentle myofacial work or muscular "craniosacral-like therapy" done by Upledger trained therapists. I know it is disappointing when something that you expect to make you feel better actually causes you to feel worse, so I hope that you will "recover" from your massage quickly. ~ Broken_Shell

Thank you all for your replies so far. I am seeing a mitochondrial specialist at the end of June, so I will see if anything productive becomes of that. The doctor actually spoke to me on the phone himself and his scheduler fit me in 4 weeks before his first official new patient opening, so I at least feeling positive about the physician and his staff. My neurologist and I still haven't heard anything back from Cleveland Clinic, but at least finding this other doctor - who also happens to be closer to where I live - is a start. ~ Broken_Shell

Oh Suzy... all I can do is send hugs and say that I understand and I wish so much that there was something I could say or do. Please let me know if there is any way that I can support you. It is cruel that we have had so much taken away from us... I am 27 years old and when I think about everything I have lost - both of my current life and my future abilities and potential - it is very overwhelming sometimes. I know that you are trying to take things one day at a time and focus on the positive, but remember that you are a human being and you do have the right to mourn for everything that you have lost as well. Just hang in there and know that somehow, someday another better wave of functioning will come - hold on to that hope! HUGS again. ~ Michelle (Broken_Shell)

Hi llynjchurch, and welcome to the forum! I am sorry for what you have been through the past few years, but I am glad that you have found us here. We understand what you are going through all too well, and I hope that you will find a lot of answers, suggestions, and support here on the forum. You may want to browse the post archives to get ideas about some of the symptoms that you have mentioned. Have you found a specialist who understands and treats dysautonomia to work with? What medications and other therapies have you tried? Have you tried modifying your diet and eating several small "half" meals a day to help with the gastrointestinal symptoms? I wish you good luck and send many hugs as you begin your dysautonomia journey. ~ Broken_Shell

Sorry to hear what is going on. It must be frustrating. Have you checked your blood pressure to see if it correlates with the headaches? Are you having any other symptoms with the headaches? ~ Broken_Shell

Hi, I tried Armour thyroid and had a lot of side effects due to the T3 in the medication. About 30 minutes after taking it I would get flushing, palpitations, anxious, etc. Have you tried other T4 products - Synthroid and Levoxyl (I wasn't sure which synthetics you have tried)? I am not sure what would cause the double vision per say, as it is not usually associated with increased T3 or T4 levels, but I hope you can find something that works for your body. ~Broken_Shell

Hi, I would check with your doctor to see if he thought you should have seen some benefit by now. I would think that you should have seen and felt a benefit after several months. I always vote for stopping unnecessary meds, but be sure to talk with your doctor regarding how to stop the med - if you need to taper it or can stop suddenly. Good luck, but sorry to hear it hasn't helped. ~ Broken_Shell

Hi Stephanie, Welcome to the forum. I hope you will find us informative and supportive. I am sorry for what you have been through though, and I hope you can find a good doctor to work with. As I am sure you know, dysautonomia is difficult to treat and management involves a lot of trial and error. Regarding your question about the facial muscle spasms, I also have this. My problem is so severe that I can only eat pureed food because I cannot chew. My facial spasms also cause bad headaches associated with dizziness and make me very woozy. Again, welcome aboard. I look forward to seeing your posts! Take care. ~ Broken_Shell

Hi, I understand your frustration. I wonder the same thing because I have read several books on dysautonomia too, and they all seem to imply that there is considerable improvement after developing this condition. You've probably heard my story at some point... I have had this condition for 7 years and progressed from an active dancer and pharmacy graduate student to someone who can barely care for themselves - let alone finish my degree, work, drive, or exercise. I have no doubt that some patients improve, but it probably depends on a lot of factors that are beyond our control. I have resigned to the reality that I will likely never have a normal life, but that is not to say that I will not continue to try to find something to improve my functioning, cherish the few temporary steps forward I take, and accept and keep my head up despite the many more steps I take backwards. If I meet a doctor who says all these patients improve, I am inclined to ask for the patients' contact info to hear for myself! Whatever you do, hang in there and never give up! The road is hard, long, and unfair - I know, but it is up to us to choose to travel it as best we can. ~ Broken_Shell

Hi Rene, Not up to typing right now, but sending HUGS and lots of prayers and support. The steroids can definately push anxiety through the roof. Hang in there as best you can! We are all here caring about you. ~ Michelle

Hi, I am wondering if anyone here has ever been tested for or suspected of having a mitochondrial disorder. My neurologist thinks that I may have an adult-onset mitochondrial disorder in addition to dysautonomia, and genetic mitochondrial testing that I had done several months ago showed a few "undetermined" mutations. She sent my records and is waiting to hear back from a Dr. Cohen at Cleveland Clinic who does research in this area. I did a little reading about adult onset mitochondrial disorders, and one of the symptoms is dysautonomia. I was quite surprised at the overlap between dysautonomia and adult mitochondrial disorders and would enjoy hearing from anyone who has any knowledge on this topic. Below are the links that I was reading if anyone is interested... http://www.umdf.org/site/c.dnJEKLNqFoG/b.3...69/fontfont.htm http://my.clevelandclinic.org/disorders/Mi...al_Disease.aspx http://my.clevelandclinic.org/disorders/Mi...l_Diseases.aspx Thank you in advance! ~ Broken_Shell

Oh Suzy, I am sendings HUGS! I am SO sorry to hear that your body is taking you backwards. I understand, and I wish that there was something I could say or do. I know though... we all live for those minutes, hours, or days when we feel more normal and can start doing things that we can't otherwise do, but having those moments make the steps back hurt a hundred times more. It's a mean trade off, I know. It's like you are being thrown off a cliff and clinging to dear life with your fingernails scratching at the edge begging not to have to go back to such a dysfunctional state, but it is completely out of your control. I am on the verge of having the same thing happen to me, so let's just promise to hold each other up, ok? Just know that we are all here praying for you and supporting you no matter how you feel. ~ Michelle (Broken_Shell)