Rosie

Thanks for the topic. I at least now know that I am not the only one that has inflammation after using my muscles, particularly muscles in the upper body. This also acts as a headache trigger at times. For me, I really don't think it is the muscles per se. I am leaning more toward a problem with the vascular system. Have any of you read about Collagen Vascular Disease? It is related to problem with the Immune System.

Interesting post. Rama. But this is me, from what I understand so far. I developed an aneurysm in the brain and see a neurosurgeon periodically to watch it. Once he remarked that my cerebral arteries were very large, "As in really, really large." I also have high levels of NE. And I believe that I have some autoimmune/autoinflammatory stuff going on. Whether the latter is due to low levels of D3 or not is yet to be determined. Seems I am a mix!! And I would assume I am not the only one. Nice reading about the working theories, though. Thanks for the post.

Mack'sMom.... Let me tell you a bit more of what I have been thinking/studying. I have MVP SYN, and my body produces lots of Catecholamines... stress hormones. In addition, any chronic illness is considered to be stressful. According to researchers, in the short term, stress can boost the immune system, but chronic stress suppresses it. I guess Adrenal Fatigue would be a good analogy. Our systems become tired. And so, according to this train of thought, the strength of one's Immune System would be dependent upon how long one has been ill and/or stressed out. Something else I have been reading about are the Autoimmune/Autoinflammatory Disorders/Diseases. There are definite ANS issues linked to some of these. This is where my readings are leading me due to health problems in my family that fall in these categories as well. Good luck all.

If you all don't mind a suggestion, when researching, look for the link between Chronic Stress and the Immune System... lots of info out there. And many of us have an over-abundance of Stress Hormones floating around. I am reading about this myself.

You made a connection! Good on you. I hope it will lead to a better understanding of your medical problems and tx for you.

Ramakentesh... thank you for responding. I try not to be nosy, but I am curious. I cannot prove the Autoimmune/Autoinflammatory connection at this point. However, the overlap in symptoms seem to be too many to consider it to be coincidental. Genetic testing is not too far away. I saw something that said in the near future sequencing of one's genome will cost about $1000.00. I think much of the speculation will soon be put to rest. I do wish you well, and I hope this flare is short.

Ramakentesh..... if you have Docs that will whack you in the face with studies, then you are indeed fortunate. It has been my experience that I have to do the whacking! I do try not to make assumptions about what is going on with me, but I do make educated guesses, and the ones I have made have been correct thus far. I have had problems that were not found by some good Docs until I insisted on testing. Now those problems are being treated along with my Dys. So you have actually been diagnosed with an Autoimmune/Autoinflammatory Disorder. You are the first person with Dys that I have communicated with who has been diagnosed, although I don't believe you will be the one and only. If you don't mind me asking, how long have you had the diagnosis? Nice to hear that it is Mild.

And I would like to add something as well re Autoimmune Disorders/Diseases. It does not matter if a problem starts with a virus or a bacteria, it can become Autoimmmune if the Immune system does not function correctly. Personally I do not see Lyme as THE cause of Dys. However, I do think Chronic Lyme may be another Autoimmune Disease. Before anyone says,'Not me', Have a look at the list at the link I will leave. I have MVP with Dys, which is inherited. Not long ago, I would have said, 'Not Me', as well. http://www.aarda.org/research_display.php?ID=47 And if anyone is interested, I would suggest looking at Autoinflammatory Diseases as well. Take care all.

Firewoman.... I have read lots of your posts. We have many symptoms in common. I have had symptoms as long as I can remember.... first fainted when I was about 7 yo. Have the headaches, etc. After I had a virus last Fall, and a weird reaction to that, I had looked at MCAD, and began the treatment protocol for that. But I went beyond the MCAD because I just did not feel that was the answer. Regards.

Hello Gary and all.. I don't post here often, but do still read. And I do believe you are on the right track. You might want to have a look at Autoimmune diseases + Pyrin and/or Cryopyrin (proteins). These act as 'brakes' for the immune system response. Some folks don't have these proteins, thus our bodies create the Autoimmune response. Regards.

Hi Morgan... Please have a look at Sleep Enuresis. You already know that your sleep pattern is not normal. This may be something that could be addressed with a GOOD Sleep Specialist. My best to you.

Oh, Morgan!! For goodness sake! Yes, do get your report. And if that doesn't answer your questions, then ask for the Data Summary Report. This is the report that is given to the Doc so a report can be dictated. Scoring sometimes is a big factor in these reports. I am so sorry that your test turned out this way.

Oh my, Paul! Sorry you find yourself with so many problems!! Do you have your Apnea under control? Treating my Apnea has helped me tremendously. Looking for that diagnosis was the best medical decision I have ever made, I think. For the SBS...have you ever heard of / tried Kefir? It is truly good stuff for the gut. If you Google it, you can find lots of info. By best to you and your family.

Oh, Morgan!!! What a terrible situation for you to be in. Honest to goodness there ought to be a law prohibiting such things. And Conversion Disorder.....unhuh, yeah right. Pfffftttt...and a very derisive pppffffffttt, at that. I hate to see you give up, but can understand why it seems hopeless. Maybe something will materialize. Yes, I know remembering dreams isn't 'normal'. I will still occasionally wake up when I have a vivid dream, but I don't remember it the next day. Tell your son he may want to hang on to the Auto machine if he can. The set up can be changed so that it will run at a straight pressure if he is more comfortable with that, but a straight pressure CPAP can never be changed to an Auto. Since he will have the machine for a good while, there may be a time when he might want an Auto. One that collects data is good as well. Take care.

Well, what is the matter with that man, Morgan!!!? Seriously, what are his objections? Maybe we can find something to convince him to change his mind.

Morgan.....a Sleep Lab connected to a University Hospital in my state doesn't require a referral. Might want to check yours if one is near. My Insurance is like yours. I was able to get my PPC to refer me, but found out later I could have gone to the University without the referral. Good luck!

Woohooo......someone else has been diagnosed and is being treated. Good on you, Goldicedance! The beginnings can be a little rough, but hang in there. The results can be well worth the effort. If I can help in any way, let me know. I have been on treatment for 2 years now. About the cold symptoms......I got those before I turned my humidifier up. The machine, for me, seems to make any virus much milder. Morgan- Can you work around your Doc? That is not something I would normally recommend, but will if (s)he isn't open to testing. Honestly, it is worth the effort. AJW- Same for you. Sometimes we have to be our own advocate. Take care all.

Hi Niki- If I am reading your post correctly, you seem to be saying that you don't believe the problem you have with breathing is Apnea because it happens before you are fully asleep. If I got it right, please do a Google search for 'Sleep Onset Apneas'. These Apnea episodes always occur during that light sleep we go through before falling into a deeper sleep, and can cause the symptoms you related. It would be a good idea to have a Study done if you haven't had one. Good luck to you.

Hi ..... I had Cluster Headaches, and it was those HAs that led to my diagnosis of Sleep Apnea. I had had them for awhile, and the Docs had tried several meds without much success. I was just growing more fatigued by the day. Finally, I did some research, and found that about 80% of people who have Clusters have Apnea. I was tested for Apnea, got a machine to treat it, and the headaches stopped. Much to my surprise, tx for Apnea also helped greatly with my Dysautonomia symptoms. I think I have posted about this before on this Forum, but will repeat it. After some time time on a CPap machine, I was able to discontinue 2 meds that I had taken Dysautonomia for years. Here is a link for some info on Clusters and Apnea: http://healthlink.mcw.edu/article/963337560.html Hope this helps. Those Cluster Headaches are horrid!....and that is an understatement.

Melissa....thanks for clarifying. What you said makes sense. I too hope that further damage to my body will be slowed with treatment. I now have 5 stents due to vascular damage. Each time a stent was placed, I was told that it was most unusual to have blockage where it was actually located. None around the heart so far though. Had I known about the Apnea earlier in my life, however, I might have avoided the blockage and the stents. I found an interesting site today, if anyone is interested: The International Classification of Sleep Disorders (classification outline). http://tinyurl.com/yshl34 It briefly gives a description of several sleep related health problems. The 'Sleep Related Headaches' links include Migraines. TTYL

Maxine- I think Docs are going to have to be a bit more aware of the issues involving sleep. Sleep is so fundamental. If one is well rested, then it is easier to cope with other problems we have to deal with. Hi Kitsakatsa- Thanks for stopping by. It lets me know that there is another! I've never heard that about CPAP being contraindicated. It certainly has helped me. Dawg Tired....That is sad. I backed up to a lower pressure and increased it one point every 2 weeks. And I also use the humidifier. That makes the treatment much more comfortable. Hi BuddyLeesWife- Yes, I found this one as well. There seems to be a great group of folks here. It is nice to see you again. It appears that more and more are being diagnosed with both disorders. I've got to go. Got to get ready for a cook out. Take care all, and thanks for stopping by.

Hi Y'all (yes, I live in the South ) Thanks for stopping by and letting me know you are here. And thanks for the welcome. Since Dysautonomia can be so difficult to treat, and many docs just don't get it, I think it is wonderful that a bit of compressed air can be beneficial to some of us. I do hope the word spreads about this. Dawg Tired- Have you tried starting with a low pressure and then increase the pressure? That is what I had to do, and my pressure is not that strong. It seems that some of us are just more sensitive.....though I guess that makes sense for those of us with Dysautonomia. Also have you tried the BiLevel. I am truly sorry the surgery did not work for you. I think it would be awful to have Apnea and not be able to treat it. Hi Ernie- I know you are happy to be able to get out of bed without fainting. Fainting is very frightening, especially if you don't know when it will happen. I was about 7 years old when I fainted for the first time..... that is the first time I can remember anyway. Hi Maxine- Yep, it seems finding the right mask is very difficult sometimes. I have a cushion that fits just under my nose. It is very comfortable, although the headgear is the pits. I hope you will find what you need and let us know if it helps. Hi Sunfish- I am so sorry to hear that a CPAP hasn't been able to help you. I wonder if it is because yours is mixed? Do you have one of the newer machines that is supposed to work better for mixed apnea than the standard CPAPs? I didn't fit the profile either, and so my diagnosis was delayed. The Dr. is see for Dsyautonomia (one I really like BTW) just shook his head and said, " Who would have thought it." when I gave him a copy of my Sleep Study results. Thanks for the tip on Search. I will look. TTYL

Hi again Chrissy- The only thing I can add is this: If it were me and the Sleep Eval was more than a year ago, I would ask that another be done.... especially since one Dr. thought there was some indication of Apnea. Apnea tends to become worse as time goes by if not treated. A restful night is a wonderful thing. I have 2 Dr.s I really like. Both missed the Apnea. I hope you feel better soon.

Hi Chrissy- Have you been tested for Sleep Apnea. It is reported that about 80% of folks who have Fibro have Apnea. Sleep Apnea 80% of people with fibromyalgia suffer from sleep apnea, a disorder that causes momentary stoppages in breathing. Sleep apnea only occurs when a person is sleeping, but it can affect some people so badly that they actually cause themselves to wake up. Many people who suffer from sleep apnea don?t even know that they have it - usually it is a partner that notices the sufferer waking up. http://tinyurl.com/2do3r5 And CFS is said to alter sleep patterns. Chronic fatigue syndrome (CFS) has been associated with altered amounts of slow wave sleep, which could reflect reduced electroencephalograph (EEG) activity and impaired sleep regulation. http://tinyurl.com/yrbfd9 I hope you get some relief soon. It is hard to 'get a life' when you don't feel well! Rosie

Hi All- I'm new here. I must say I am glad to find others with Dysautonomia but sorry that we all feel a need to be here. I was diagnosed with Mitral Valve Prolapse with Dysautonomia about 30 years ago. Just recently, about 21 months ago, I was diagnosed with Sleep Apnea. What has been surprising and pleasing is that treatment with a CPAP has helped tremendously with the Dysautonomia symptoms. There is a bit of research which indicates that the ANS is really stressed during Apnea events, that the effects of the stress tends to carry over during the day, and that treament with CPAP can mitigate the effects. I would love to talk with others who have both disorders, and find out about your treatment and results. If you don't mind sharing, please do. I hope there will be more research in this area before long. Looking forward to hearing from you.....even if you don't have both disorders. Rosie