Broken_Shell

Hi, I also have severe myofascial and muscular tightness and pain, especially in my neck, shoulders, and face. I have been receiving physical therapy weekly for almost two years, and while it helps short term, my body seems unable to maintain a long-term benefit. My pain doctor and neurologist think that this constant and inappropriate tightness may be related to the dysautonomia. I don't have fibromyalgia because my pain is caused my every little position and activity that uses the muscles, but I don't have intense pain if someone touches me. They just call it "myofascial pain syndrome." The PT that I have found helpful is Upledger trained myofascial therapy. I have also been helped quite a bit by use of kinesiotape. You might want to consider trigger point injections - I didn't find them helpful, but they might be worth a try, especially if you have a lot of knots. Hope that helps, and I hope that you are feeling better! ~ Broken_Shell

Ernie, I am glad the respresentative that you met with was understanding and took time to talk with you. I will keep my fingers crossed that they make a good decision and can offer you assistance and disability benefits. Keep us posted! ~ Broken_Shell

Hi, I have tried a number of progesterones, one of which was natural progesterone cream (I had a bio-identical compounded prescription). I thought that I would respond well to it, but after a couple of months of use I developed a couple problems that have since resolved since I stopped using the cream - unilateral breast swelling and pain (so severe that the doctor ordered a mammogram, ultrasound, and mri which showed fibrocystic changes - I never had a problem before using the cream), increased vascular spasms in my feet (suddenly painful and cold at night that happened nightly the days I used the cream). I hope that you have a better experience with the cream if you try it. Have you had an endocrine blood work-up to check the levels of your hormones throughout your cycle? Maybe that would help give you some direction if you are unsure what to do. ~ Broken_Shell

Yep...I feel pretty bad most of the time, regardless of my HR and BP. I think it is just all part of the autonomic system not working correctly regardless of what our vital signs are. One doctor also told me that cerebral perfussion isn't always accurately measured by peripheral BP, so maybe this explains some of what we experience as well. ~ Broken_Shell

Hi Ricky, I am sorry to hear that you and Michelle are still struggling, but I am glad to hear that you are still trying new things and asking questions. Just a few thoughts on your questions... Although Ritalin does increase blood pressure, it can have a lot of side effects that midodrine doesn't normally have - i.e. increased HR (definately not something that you want!), lack of appetite, insomnia, anxiety, etc. I would not reccommend considering using Ritalin in this situation unless the midodrine is not keeping her blood pressure up or causing intolerable side effects. I don't take a combo of midodrine/florinef/toprol XL, but I don't see a problem with using them in combination. The midodrine constricts the blood vessels to increase BP, while the florinef increases blood volume through salt and fluid retention, and toprol XL works directly on the heart to decrease HR. The mechanisms by which these medications work don't interfere with one another, so I would suggest talking to your doctor to get his opinion. Finally, regarding other reasons for the heart rate elevation - has she had a through endocrine and cardiac work-up beyond HR/BP/autonomic testing? The elevation in HR can also be an autonomic dysfunction in and of itself regardless of the actual blood pressure. This is where adding back the Toprol XL might provide some real benefit. Good luck and keep us posted. ~ Broken_Shell

Hi Jan, I just saw your message. It sounds like you know quite a bit about the Dysautonomia Support Group at Froedtert. I didn't realize that it didn't actually meet at Froedtert, so I am glad that you mentioned that. I took the information paper from the clinic, but since I'll be in the hospital on the 1st, I know I won't be able to make it which is disappointing because I was excited to see a support group in Milwaukee. If you go on the 1st, will you please PM me and let know how it goes, what the meetings and member are like, etc.? Thank you so much and I hope that you are feeling well enough to make it to the meeting! Take care ~ Broken_Shell

Hi Fallon, I sometimes get inappropriately woozy and "wierd" feeling after having blood taken. I think that it is just an exaggerated response to a small loss of blood volume and a hyperadrenergic reaction to the blood draw itself. ~ Broken_Shell

Hi Toni, Did these strange symptoms start after you started a new medication, specifically an anti-depressant or a beta-blocker? If so, these medications can cause a lot of bizarre symptoms (more so the anti-depressants, but the beta-blockers can cause nightmares and unusual nightime disturbances), so perhaps that is the cause. You should check with your doctor if these happenings seem to be related with starting a new medication because they certainely seem scary. Hang in there! Any word yet on getting an appointment with an autonomic specialist? ~ Broken_Shell

Hi All, Just wondering if any of you from the Milwaukee, WI area are familiar with the Froedtert Clinics dysautonomia support group. I saw information about it during my appointment with the neurologist last week and was curious if anyone from the area has been to the group and can tell me about it. I was hoping to feel up to attending the meeting on April 1st, but am now being admitted to the hospital on that day for some GI testing and won't be able to make it. Thank you much for your feedback if you are familiar with or have attended this group. Hope everyone is having a tolerable day! ~ Broken_Shell

Hi Babette, Good luck! Let us know how everything goes. I have had the QSART and stress echo in addition to the TTT. I don't think I could add much beyond what you have read, but the stress ECHO was really difficult for me because I do basically no activity and had a difficult time running on a treadmill and felt like I was going to trip before I even started getting lightheaded and feeling like I was going to pass out! The QSART test invloves making little circuits on your legs to stimulate sweat production. They burn quite a bit, but at least they are only running for about 10 minutes. When you're done, they leave these beautiful burnt looking red circular marks where they were placed. My neurologist wants me to repeat the TTT and QSART in April because my symptoms have been changing a lot lately, so this will be the fourth time I am having them done too. Anyways, best wishes with the traveling and the tests. I'll keep you in my thoughts and look forward to hearing how it went. P.S. Are you going through a Cleveland Clinic cardio or neuro doc? ~ Broken_Shell

Hi Alicia, Just wanted to let you know that Klonopin and Neurontin are not the same type of medication. Where did you read that they were? My formal education is in pharmacy, so I can assure you that they are different classes of medications that work differently within the body and can be helpful for different types of symptoms. Good luck with your decision! ~ Broken_Shell

Hi Alicia, I understand your fear completely, as I am ridiculously sensitive to medications. I just wanted to mention a few things. Klonopin (generic clonazepam) is NOT an anti-depressant, but Effexor is. They are very different medications, so here are some things to consider and talk to your doctor about. You will know how you respond to Klonopin within a few days, whereas Effexor will take 6-8 weeks of use before you will likely see positive effects. These medications are also most likely to help different symptoms - Klonopin is probably going to be more helpful for "overstimulated/anxiety-like" types of symptoms; Effexor is more likely to help symptoms such as lack of interest and energy, feeling down, etc. Both of the medications are ones that you should not stop taking abruptly, so keep this in mind as well. Finally, I wanted to mention this is regards to your medication sensitivity - if you are having a hard time tolerating a medication, it is worth talking to your doctor about it and trying a smaller dose. As I mentioned, I am extremely sensitive to medications, and I literally cut my tablets down as small as 1/8 of a pill. If it is a capsule, you can open it up and pour some of the dose out to make it smaller. Also, many medications come in liquid form, where it is easier to measure a small dose. Just be sure that you talk to your doctor about your symptoms and concerns, and once you start a medication, call the office and let the doctor know how it is affecting you. Good luck with your decision. I hope that you find something that works well with your system and helps you feel better. Keep us posted. ~ Broken_Shell

Hi Erika, Welcome to the forum, although I am sorry that you have had to find your way here. I wish you advice and support as you post and browse the archives. I would recommend reading the posts entitled "My wife is in the hospital" as well. They were posted by the husband of a patient in Florida in the recent weeks. I have also had to apply for disability, and my advice would be to make sure that you tell your doctors all of the symptoms that you are experiencing and how they interfere with your daily life. Don't leave anything out, no matter how trivial it seems. If you can no longer prepare meals for your family or get yourself showered and dressed on a consistent basis or make short trips to the store on a regular basis, tell them this and make sure that they make note of it in your record because your decision regarding disability will be based on your functional status, not just your diagnoses. Best wishes, and I look forward to seeing your posts on the forum. Take Care, Broken_Shell

Hello Toni & Welcome! I am sorry that you are having such a hard time. I hope that you will find some answers and support by looking through the forum archives about some of your symptoms. It sounds like you definately could have dysautonomia, but you will want to rule out all other possible causes too. Dysautonomia is very variable and each person can have unique and changing symptoms. You don't have to have a drop in blood pressure when you stand - that is a common misconception. I would recommend that you try and send all of your records and a lengthy letter to Dr. Morillo and explain to him that you are interested in a clinic visit, but because the travel would be difficult for you, you would apprciate his feedback as to whether or not he has successfully treated patients with the symptoms and test results you are experiencing. Best wishes, Broken_Shell

I hear you! I have been hoping to feel good enough to attempt to start some "Spring Cleaning" for the last couple of months. I know that once I get started, I will have to clean in like 5 to 10 minute intervals and it will take me several weeks, but all I want to do is get a start. My birthday is coming up in April, and it would make me happy to start my next year of life with a clean house! We must somehow stay patient and believe that somehow, someday we will get these things done! HUGS, HUGS, & MORE HUGS ~ Broken_Shell

Hi Fallon, Welcome to the forum! I hope that you will find all of us to be a helpful and supportive resource. I am also 26 years old, and have had dysautonomia for the past 7 years. My symptoms began following a "viral illness" that the doctors thought was mono, but the test was negative. I was sick for about two months, and then although I improved, I never felt right. I began having a lot of problems with fatigue, dizziness, lightheadedness, hypoglycemia, loss of sweating, visual disturbances, gastrointestinal problems, myofascial pain, etc. I saw multiple doctors and underwent testing for a couple of years before being diagnosed with dysautonomia. Since that time, I have added new symptoms and my condition has progressed to the point that I had to leave graduate school two years ago and am now unable to care for myself on a day to day basis. I am still in search of a treatment plan that will get my body back to being a little more stable and improve my functioning and quality of life. Take care and feel free to post or browse the archives. I look forward to hearing your experiences and input on the forum! ~ Broken_Shell

Hi Cameron, And Welcome. I am glad to hear that you are feeling a little better, have found someone who has a treatment plan for you, and have decided to join the forum. I hope that you will find a lot of suggestions and support here.... who knows, maybe even a good recipe for cupcakes ! I am impressed by your positive attitude and motivation. As far as your comment on relationships, I hope that you will find someone who can look past your physical condition. You seem to have a good sense of humor and outlook on life. I am your age and female, and I can assure you that there are women out there you are able to do just that. Having dysautonomia has made any type of close social or romantic relationship impossible in my life right now, but what I think is that if I am ever well enough to have a romantic relationship, I would probably relate best to a man whose life has also been drastically changed by a medical condition or other situation just because dysautonomia and its daily consequences are very difficult for others to understand. Perhaps you will find the same. Anyways, wWelcome aboard again and I look forward to seeing you involved in posts. ~ Broken_Shell

Hi Michele, I hope this finds you feeling a little better. I sent you a PM. ~ Broken_Shell

Hi Michele, I second what Babette wrote. I did stop having periods for several years after developing dysautonomia, and now having my period makes my other symptoms worse - same as Babette wrote, the heavier the blood flow, the worse the autonomic symptoms. The only way to officially diagnose endometriosis is to have a laproscopy done. Some OB/GYNs do these, but it might be best to look into a fertility specialist who has done a lot of laproscopies. My mom had endometriosis, and it has been discussed whether or not I have it and should have the laproscopy procedure, but my hormone plan right now is to suppress my periods to try and stop the symptom flares that are associated with them, so I have opted to not have the laproscopy done right now, as I don't think my body could handle it. I mention looking for a specialist though because my mom's endometriosis was on her lumbar spinal nerves and was missed by the general OB/GYN until she was finally diagnosed by a more advanced scoping. She was in so much pain that she would lay on the floor screaming and pound on the walls every month. Because they missed it on the first diagnosis, she was sent to all sorts of pain clinics and given medications and injections for years before they finally found the endometrial growths on her nerves and removed them with surgery. I will keep you in my thoughts this week, and I hope that the pain with this cycle will be less severe than you have had in the past. ~ Broken_Shell

Hi All, Just agreeing with all the above-said . I think I was a very caring and understanding person before developing dysautonomia, but I still could have never grasped what it would be like to live the life I now have. Unless someone goes through what we experience every day (or suffers from another life-altering chronic illness), I think it is next to impossible to realize what it means to keep fighting through each day and investing all of your energy into just surviving. For us, this is a full-time job, and that concept is difficult for anyone to comprehend. After years of being sick, I don't even remember what "normal" feels like any more. It seems like when someone first becomes ill, there is a concern for them, but I think that sometimes our family and friends get so used to how we are, that they no longer see how unwell we feel and how much we are struggling each day. However, even as the time that I have been affected by dysautonomia gets longer and my ability to function continues to decrease, how I feel each day and what is happening to me will never be "ok", and it will never stop being scary and disappointing for me. Just because we never feel "good", it doesn't mean that we can still carry on the same as we used to. We all modify and simplify and push ourselves so much each day, and most of that is missed by people whose only concept of illness is as something that lasts for a few days and then goes away. Thank you all for letting me throw in my few cents worth. I hope that all is as well as can be with everyone. ~ Broken_Shell

Hello NorthernDarlene, I wanted to clarify what I wrote earlier about elevated cortisol and medications. What I was referring to were medications that bind circulating cortisol. Since the test that measures cortisol levels in the blood measures total cortisol (that which is free and active plus that which is bound and inactive), it can appear falsely elevated in people who are taking these medications. (I went through several doctors before one of them was knowledgable enough to recognize that this was happening with my lab values). However, the medications do NOT actually cause elevations in cortisol, so there would not be symptoms of elevated cortisol. When I wrote that, I did not know that you indeed had symptoms of elevated cortisol. Also, none of the medications you are taking are known to bind cortisol. (My formal education is in pharmacy practice). I would definitely follow up with the endocrinologist to determine whether or not you are experiencing cortisol abnormalities. Like someone wrote earlier, there are many things that can cause transient elevations in cortisol, so the endocrinologist would be the correct doctor to evaluate this. Best wishes and keep us updated on what you find out. ~ Broken_Shell

Hi NorthernDarlene, One thing I wanted to mention is that certain medications can cause "false" elevations in cortisol during lab tests. One of the most common is birth control pills, but there are others. Do you mind if I ask which medications you are taking? If you repeat the test and it shows that it is still high this is something that you might want to rule out with your doctor before you begin an extensive work-up for elevated cortisol. ~ Broken_Shell

Hi Rene, I can comment on the discolored and fluctuating temperatures in the hands and feet. I have the same thing, and I believe that in my case it is due to abnormal autonomic regulation of the capillaries because the peripheral vasculature is very sensitive to "autonomic" neurotransmitters and hormones. My hands and feet are usually cold and purple, but if it gets a little bit warmer in temperature or I shower, they turn bright red, and I often times hold ice packs on them to get the vessels to constrict because when they are dilated and pooling blood I feel more lightheaded and woozy. On the other hand, when I am having a lot of other autonomic symptoms, especially GI disregulation, then my hands and feet can turn so discolored, cold, and mottled that I put a microwave heat pack on them. I also wake up at night with one foot freezing cold and painful while the other is a normal temperature. I have an extreme intolerance/sensitivity to changes in temperature, especially heat, but the temperature and color changes in my hands and feet happen spontaneously too, not just in relation to the temperature, activity, or blood pressure. The ironic thing is that almost every doctor that I have seen (and that is a lot) comments on the color and temperature of my hands within minutes of meeting me, but no one seems too sure what to say about it. I have been told that it is not Raynaud's because it does not only happen in response to temperature. I hope that helps! Best Wishes, Broken_Shell

Hi, I have severe myofacial pain, mostly in my neck, face, and jaw. It is not diagnosed as fibromyalgia because it isn't aggravated by touch, but rather just called "myofacial pain syndrome." mkoven - what is eds? I am not familiar with this and am wondering if it might pertain to me. ajw4055 - You might find this link helpful, especially bullet #2 under "what causes it?" http://www.umm.edu/altmed/articles/fibromyalgia-000061.htm Best Wishes, Broken_Shell

Hi Michelle, I am glad to see that you are up to using the computer, but very sorry for what you and Ricky have been going through. I just wanted to share a few things with you. I agree with the other post that suggested that you use a home BP monitor to record your BP both laying and standing, especially when you are symptomatic. You can have various symptoms from both too high and too low of BP, so I would suggest that you check your BP throughout the day, especially when you are having increased symptoms, as well as when you are feeling your best. The Midodrine has its peak effect about one hour after taking it, so this would be a good time to record your BP as well as before your next dose, and about 15 minutes after you eat a meal. I also personally have several symptoms related to eating (mostly wooziness, pressure in my head, and feeling like all the blood in my body is being shifted away from my head towards my GI tract), as I believe many people on this forum do. It is tricky because eating causes a lot of shifts in your body's blood supply and where it is devoting it's "energy" to, along with being a completely autonomic activity. If your autonomic system can't compensate adequately, you can develop a strange set of symptoms. Many of us also have "IBS" - basically lack of consistent and appropriate autonomic regulation of the GI tract. I understand that you were not eating on a regular basis for several days in the hospital. The best suggestions I can make are these: try to start with a bland diet (rice, bananas, apples, egg whites), and eat smaller than usual meals. By eating small meals, you are giving your body less of a "load" to deal with and it should help to decrease some of the blood shift that comes with eating. Have you ever tried liquid nutrition like Boost, Ensure, etc.? They might be worth a try if you are having a hard time with solid food. Just be careful because these products can encourage diarrhea, which it sounds like you are already having a problem with. If you didn't have GI problems before your hospital stay, then it may just be that your body is adjusting to carrying out more autonomic activities with the Midrodrine and Florinef on board, so give it a few days to see how things work out because both of these medications can cause GI upset. If you are still having problems after the weekend, don't hestitate to contact your doctor to see if he has anything to suggest. Best wishes and hang in there. I hope that you can take it easy and make it through the weekend without any more major episodes. Keep us posted on how you are doing. I hope that you will find a lot of support on the forum. Hugs ~ Broken Shell