Noreen

Is that what that frequent urination is about? Good gosh, it is so helpful to not be alone in this.

You're one impressive lady. I really find your fighting spirit inspirational. Hope things improve soon. Sending positive energy and prayers your way for a joyous weekend. Noreen

I'd have to say they go hand in hand. I was a blithering mess even with therapists before this forum. Theere is so much to the nervous system and not being able to recognize all the symptoms is rough. But to be able to say what the issue is briefly was beyond me before I got here. Of course, even still your therapist selection /search should be for one with experience with chronic disease (e.g. MS) and its ramifications on the family. However, the therapist won't have the keen insight into dysautonomia that the members here have. Now if you have an excellent supportive spouse, maid service, a hair dresser with caring attitude and wonderful obedient children perhaps this doesn't apply to you. Me - I have a serious problem turning off the Mommy button. You can put yourself first for an hour, have someone help you prioritize things, help you brainstorm solutions, let you know if you are acting loony. Vent when the kids are being kids but you can't deal with _______________insert sensory issue or additional energy drain here. And, of course, the insights you gain from therapy will benefit the forum.

Lisa- He was trying to see if there was a background of major depression or suicidal ideation (thoughts of suicide). Personally I think that anyone in serious chronic pain who has not thought about suicide at least fleetingly is probably crazy. Is it possible he meant you should see someone within an established mental instititution to get to the root of your problems? Meaning he meant to suggest you should see a psychologist. I don't really think he meant you should be locked up. Actually if he thought you were such a danger, he might have had to do soemthing by law. So try and relax and know that when we get upset our autonomic nervous system gets totally shot, miscommunication can occur. Anyone with chronic illness can benefit from counseling. It can be from a psychologist or a certified social worker. What you want in backaground is someone who has dealt with chronic illness. Heck, with what you've been through the past year you can keeep the past compartmentalized for another couple years while you deal with the here and now. Just don't let it jump up and bite you. {{hugs}} Noreen

Wow- thanks for that 'chased by a bear' description. I'm weird. I often need word pictures to understand myself.

Hello CM- I answered you other post before I got to this one in which you identify yourself as a physician. I think it is great that you are continuing to educate yourself as a physician. My grandfather was a MD. He became a DO and OD by studying at home back in the day when you could do that. The osteopathy and studying a bit with Sister Kenny was by way of trying to help his polio patients. He used to brew up his own Arnica oil to help with the massage. What is old is new - after I got fibro from a car accident 20 yrs ago (argue the dx later), I've never been without Arnica ointment in a tube - it is wonderful.

Thank you for clarifying. I may be overly sensitive on the issue as my friend has done more for parents of special health care needs children in this country then anyone will ever know and never deserved (not that anyone does) to be hit with finding a diagnosis for her daughter when she became ill at 23. While writing a paper for my Leadership class for my MPH, I read a book entitled The Art of Possibility . One of the key points of this book is Rule Number 6 - 'Don't Take Yourself So Seriously' - there are no other rules. I, of course, would add the Golden Rule, but use that as my radar when evaluating professionals, politicians, and the like. If you take yourself too seriously, you run into the likelihood that you will not hear the other person or the other side of an argument. I, for one, appreciate that you share our frustration with the medical community when they do not want to or are incapable of, whether by training or personality, truly listening to their patients. One point that you may not be aware is that women are still treated differently than men when presenting with the same symptoms. I hope the training is changing for doctors but the last time I researched this, probably 7 years ago now, it did not matter whether the doctor was male or female as they were taught the same way to thing/evaluate female patients. Many of us, at least those above 45, have dealt with doctors who treated us like it was all stress/hormones -choose one that time of month,pregnancy, post-pregnancy,perimenopause,menopause, yada, yada. Educating ourselves is about the only tool we have in our arsenal. Now having been brushed off and patted on the head for years, we just don't take kindly to comments that we haven't been doing all we could do. Please share what info you have but when you do please know that there are many professionals and former professionals who like to look at the original work so if you would be so kind as to include footnotes or other references so we could educate ourselves further from the original work, that would be much appreciated. Noreen

Sue- Remember that oftentimes when people are going gluten-free, they are getting away from a lot of processed foods in the process. It is wonderful that good dietary practices are being adopted but sometimes it is the overall life-style and not just the gluten-free. that said, everyone should investigate for themselves and a 30 day gluten free diet is not a bad idea. It is however hard to stick to - I do a lot of gluten free but still make my own bread from whole wheat, make my own yogurt from no hormone milk, buy local produce, chicken and meat. None of us can do everything and we do what we can to try to optimize our lives. Hopefully we learn from each other and support each other along the way.

I find your attitude insensitive and insulting. If you had half the knowledge you proclaim about medical issues you would know that mast cells are responsible for allergic reactions. MCAD or mastocytosis is a disease in which the body's mast cells are on overdrive. My best friend's daughter died at 27 from mast cell. Reasons for everything are not known. Oh, perhaps you will now explain that you can cure all auto immune diseases and our doctors are really just keeping the information from us. Please stop assuming we are all imbeciles and you have all the answers.

Hi Jen- Welcome. I have RA, Sjogren's, Raynaud's and I think a few other autoimmune conditions I can't of right now and more they still say are borderline/suspected. I understand the frustration of it taking years to get firm diagnosis for autoimmune diseases. It is rough to not be able to explain to people what the deal is. Thank goodness you have good doctors! So many of us waste our time fighting doctors or trying to find specialists that understand - in other words, do their jobs!. This is a great group and should be able to answer any questions or concerns you may have. Remember to keep up your fluid intake. Noreen

Erika- Is it possible you doc would write to NIH rare disease center on your behalf? It's a longshot but at least it might be something. Here's the link: http://rarediseases.info.nih.gov/Resources.aspx?PageID=31 I think see a counselor is a good idea. Anyone with a chronic illness can benefit from therapy. Heck, anyone with teenagers could use therapy time to vent. Best wishes and I hope you feel well enough to enjoy Easter. Noreen

Hi David- I also find this difficult. I don't see my family an hour away because I can't drive that far usually. I'll tell you I bless this forum - someone had been to Dr. Grubb and been prescribed 10 mg Adderal in the AM and Midodrin 10 mg starting at 12 and every 3 hrs. I had been prescribed these meds by different docs but they all knew what I was taking. I ran that protocol by by cardiologist and he okayed and it has made a world of difference in my dizziness and ability to ride (still at 5 minute intervals) my recumbent bike. I mention it because it has made a difference in my driving stamina - saw my brother for the first time in months last week. A couple other things - wear big sunglasses, adjust the seat ( if you have an electric one) so blood doesn't pool, and have a firm u-shaped pillow for your neck. What you are trying to do is minimize outside influences into your sphere - For us, everything is a drain on the autonomic nervous system - normal people can balance it out but we have to work at it. So you are reducing glare, minimizing sound (the radio or CD sound not be heavy metal, for instance), and avoiding stress and trying to live. Make sure you are drinking at least 64 ounces a day and getting a lot of salt. When you are out, keep a plastic bottle of water handy - you can keep a faint at bay if you chuck it down when you feel one coming. Best of luck. Let me know how it goes at Columbia. Albany Med wanted to refer me because they did not have a dysautonomia specialist. Noreen

A cyber buddy who is a patient of Dr.Grubbs saw him recently and he asked her whether she was approaching menopause. Not so in her case. Anyhow he told her that menopause is actually a form of autonomic dysfunction so be prepared for that to be a rough time. It makes sense when you think of all the symptoms of menopause. Noreen

That is so great! I love it when people are real and understanding. Your e-mail was fabulous. Unfortunately when I am feeling really'dozy' I can't remember how to send e-mails. It is oh so pathetic. I wish one of my freckles would turn into a gauge to warn me about my 'dozy' quotient. Coincidentally, I just ordered Himalayan salt this afternoon - I'm in the US so not from the same place. You'll have to let us know how you get on with the products. Noreen

True wisdom in your post, Erik

Pre-existing conditions limitations have been something determined by state insurance regulations. IN NY as long as there is no gap in insurance you are deemed not to have a pre-exisiting conditions. In other words, you can change insurances without thinking about pre-existing conditions but there can be no gap in coverage. Under the new law signed by President Obama - know in the law as the ??Patient Protection and Affordable Care Act?? pre-existing conditions are covered within 90 days of the laws signing. There is 5 billion dollars available to the states to help them help individuals get coverage - the law is a typical law and has to be but it makes it hard to read for a lot of people - I think for most of the legislators who aren't familiar with Public Health programs the federal and state governments already fund under law. I don't have the stamina to check the laws cited but they probably cite those dealing with establishing the FEderal Poverty Limit - many many programs are tied into this as a percentage. If you have Democratic representation in Congress or there is Democratic representation in the district where you are thinking (make that forced to move to care for ailing parents for sake of discussion) - you could call their office and seek advice. Just a thought.

lieze- I recently was dx with hypoglycemia. Did you do anything with the dx? Quite frankly, I am overwhelmed and can't handle even making phone calls to doctors I have to call. I don't have a clue what I am to do with this information. It's not like we could determine the smptoms between hypoglycemia and dysautonomia. Any suggestions appreciated - Noreen

Hi there- I love your Charlie Brown quote - so cute. Have you been tested for anti-phosolipid syndrome? The pain is not good. I can't tell, though, how bad your pain is or how you usually are with pain - only you can determine that. Call the rheumy if you have concerns and maybe have the lab work done before you see her/him. Wishing you the best - let us know how you are doing. Noreen

Bella= Oh my goodness what a roller coaster ride they put you on. You are a joy and a wonder. I hope you enjoy an Easter season free of health events. Gentle hugs, Noreen

Hi all- With all the wonderful answers to Babette's question on cervical instability, I have learned a lot and been reminded of a few things. My question concerns whether dysautonomia is progressive. When I was a facilitator for our local chronic pain/fibro group, we would say how we would go along at one pain level for a while and then something would happen, like another car accident, and a bit of recovery would occur but generally we would learn to live with a now higher level of pain. Would you say your dysautonomia is like that - not good, plateau, a little worse, etc.? This question is especially pertinent for those with EDS / hypermobility syndrome. Since my spinal fusion at L-4-5-S-1 10/08 for spondylolisthesis (instability /slippage of low back discs), I have had a horrid time with dysautonomia symptoms. While I was probably contributing to it by deconditioning when I realized that the cervical dystonia pain was gone when I rested enough, I am trying to sort things out prior to my appt with my neurosurgeon on the 25th. I don't feel like I speak the same language as doctors some times and tend to live in the land of De Nial so any info on the cervical spine, I'd appreciate. I have so much muscle pain in my neck that I may miss something I should be communicating.ha Thank you, Noreen

Babette- Some of the symptoms you mention sound like mine for cervical dystonia. "Neck pain in the back, sides and front of my neck; extreme tightness of the muscles in the front/sides of my neck to the point that they are visible shoulder pain and tightness;pain between the shoulder blades one shoulder is obviously held higher than the other Head sits on neck tilted a little to one side Some days feel like my head is a cantaloupe and my neck is a toothpick trying to hold it up can only look up if I support the back of my head or I feel like my head is going to fall off" I don't know what type of doctor you are seeing but when I changed neurologists, he got the cervical dystonia from my head tilt. I obviously don't know if you have this but if the name comes up you will at least be familiar with it. You don't mention head jerks but mine didn't start that way and it was a long long road to proper dx. Here's a link with the symptoms: http://www.wemove.org/dys/cdys_sym.html If they don't sound familiar to you at least you know you are seeing the correct specialists. X-rays and so on did not help me. I could be off base but please know I post with the intention of helping. Noreen

Thank God you've safely. I've been keeping you in my prayers. Your daughter is one special young lady. Give her a hug and kiss from us in gratitude for getting you there. Keep the faith! Noreen

I ran across this and thought it pertinent. Brain. 2009 Oct;132(Pt 10):2630-42. Epub 2009 Jul 8. Symptoms and signs of syncope: a review of the link between physiology and clinical clues. Wieling W, Thijs RD, van Dijk N, Wilde AA, Benditt DG, van Dijk JG. Department of Internal Medicine, Academic Medical Centre/University of Amsterdam, Amsterdam, The Netherlands. w.wieling@amc.uva.nl Detailed history taking is of paramount importance to establish a reliable diagnosis in patients with transient loss of consciousness. In this article the clinical symptoms and signs of the successive phases of a syncopal episode are reviewed. A failure of the systemic circulation to perfuse the brain sufficiently results in a stereotyped progression of neurological symptoms and signs culminating in loss of consciousness; when transient, this is syncope. Prior to loss of consciousness the affected individual tends to exhibit unclear thinking, followed by fixation of the eyes in the midline and a 'frozen' appearance. Narrowing of the field of vision with loss of colour vision ('greying' out) and finally a complete loss of vision (hence 'blacking' out) occurs. Hearing loss may occur following loss of vision. This process may take as little as approximately 7 s in cases of sudden complete circulatory arrest (e.g. abrupt asystole), but in other circumstances it may take longer depending on the rate and depth of cerebral hypoperfusion. Complete loss of consciousness occurs with the 'turning up' of the eyeballs. Profound cerebral hypoperfusion may be accompanied by myoclonic jerks.

LOL - Driving under the influence of dysautonomia Thanks for the laugh - wish it weren't so true!

I get like that too. I feel totally brainless and if I push at this time, I get overwhelming anxiety. I'm also unable to visually focus on written material. I've recently had an EEG which was normal. You mention she is sitting when this happens. Does it pass sooner if she lies down? I'd mention it to the doctor at the next appointment.