Sylvie33

I am just coming to terms with the fact I have a chronic illness: diagnosed and in full flare only since April. I will save the precipitating events for another post . I have been in isolation since this time: partly because I was depressed (this is lifting) but mainly because I am quite sick and sensitive to stimulation. I also find the task of responding and acting as if I were not ill daunting and exhausting. I even find the question "how are you?" extremely difficult. I also, for the first time, do not look well. I have lost weight and my hair and skin are thinning. I met with several old friends recently, (it took an incredible amount of energy) and I know I scared them. Other friends have stopped calling, and I am frozen -- I get it -- it is difficult to relate to me now (I was once unusually active and vibrant, and so are these folks), so I do not call either. I miss them. I miss me! I have held back information -- even from my adult son, and I only recently told my sister all the details because her husband is gravely ill. I have several wonderful friends who have seen me through and a very supportive husband. But what do I say to others? I feel I am now in a different world (part of my new very active participation here -- a real comfort). I am in a different world, which many of you have lived in far longer than I have. I would love to hear from you about strategies/advice. Thanks so much! --Sylvie

How,apropos...I found this thread as I lay down to recover from my shower! I am now directly in front of an air conditioner cooling down (tepid shower). I can manage this every day, and I wash my thinning hair too. I find my scalp is uncomfortable if I dont. Chalking this up to restricted blood flow. Although I am in the midst of my first flare, I put on a yoga outfit (hard to imagine I was a skilled fiend) to lie around in each day. There is comfort in our numbers. Best to all, Sylvie

Dear all, I just noted this on another thread. I had a second two hour(What a guy!) meeting with my neurologist last night. He told me Benadryl is particularly problematic for people with neurological disorders. Just passing this on with usual caveats @ medical advice! Best, Sylvie

Comment on Benadryl and to reply to Mike about meds. Intractable insomnia with some panic was also one of my (many) presenting symptoms for dysautonomia which came on suddenly just this past April for me (precipitating events included a toxic reaction to medication and emotional trauma). It has gone on unabated for me since then. I had my second two-hour meeting with my new neurologist/psychiatrist last night (amazing, eh?) and he suggested that I stay away from Benadryl (which I hesitantly tried): he said it is a dirty drug and can cause problems that may be exacerbated by neurological disorders. In addition, I was also taking 1 mg of Klonopin (and yes, I also fear this drug) to help me sleep. I was breaking it into four doses, using it as I woke repeatedly. He suggested I take the full dose at bedtime and perhaps follow-up with one .25 mg dose if I wake. I did this last night. I slept from about 10:30 until 2 am without interruption and then took the .25 and slept until 5am. I also remember waking up on my own and falling back to sleep without anything. This is a clear improvement. In spite of the addition of .25 mg I feel more rested and clear-headed this morning than before. As noted, I do not like any medication, given my history, but sleep is so important I will continue. I am scheduling an appointment is a **renowned** dysautonomia specialist today (even though this is private/US, it will take months), so I will continue this supervised regimen until I have more feedback and control over my symptoms. As for "hypo" issues. You write you tested negative for low blood sugar, is this correct? If so, have you read the new thread here about 4pm "adrenaline" rushes (panic) ? -- Good explanations centering on dysfunctional cortisol release which is clearly one intrinsic aspect of dysautonomia. I think this may be the case for me and perhaps for you too. If so, the nighttime eating would not be necessary (good news if you are gaining weight). The bad news is I have yet to hear of a good antidote for this. I just wished to pass on this information (with the usual caveats about medical advice). Best, Sylvie

Dear Nova and Issie, Thank you so much for your gracious replies to my comment, which I just saw today. Writing even a short piece is so difficult in the midst of my onslaught of symptoms, so I am heartened I was helpful to you both. Wishing us all health and comfort! Sylvie

Hi again Navyblue, I agree with GJenson that meeting with someone who clearly knows about dysautonomia is essential! I think he correctly points out your next steps. I'm glad my words about autonomy resonated with you, yet I could tell you have great intelligence and resolve -- you will do what is needed for yourself. However, I still feel it would make sense (now or later) to work with your family, for you will need them emotionally, and most likely, financially, if they can help in this respect. This is certainly true if you need to see a specialist, for I can only get partial reimbursement for my visits. Therefore, I suggest you pull off some information from this site (and even this thread) to convince your parents you need to see a specialist sooner than later. Again, your school might have resources to help with this. Given you are symptomatic, you may need to talk with someone in student health services for support. As I suggested earlier, if there is a decent counseling service there, it may make sense to contact them as well. Another suggestion to offer as I am also just beginning my work-up. Today, in preparation for my visit to my neurologist I made a list of my symptoms. I also wrote, but did not yet send, an e-mail to a dsyautonomia specialist I have not yet contacted (he is the one who does not take phone calls). I am bringing that, along with his web-page to my neurologist today. I am hopeful they might work together. It was also very helpful for me to write a short chronology about times of onset and progression of symptoms. Again, I too have just entered this world. Katybug's persistence is inspirational (30 doctors!) and we are both lucky to have such good minds taking questions seriously and giving wise advice. Best, Sylvie

Hi All, I feel so validated in reading this. I also experience a disturbingly intense, debilitating surge at 4pm which basically lasts all night. This was one of my most obvious presenting symptoms for a full dyautonomic assault which just began this past April. Of course, I (and my GP) thought it was anxiety because I was working on a book project (overdue) and 4pm marked the end of yet another unproductive day. Yet, I was becomeing increasingly dizzy, fatigued, and unable to work (I've been symptomatic since April, 2014, but I had no idea what was occuring: yet I did not have insomnia, crashing fatique, surges, or neuropathy of hands and feet etc. etc. etc. until a year later). It was my own research that pinpointed dsyautonomia as a cause, and I am now being worked up. I had been taking Klonopin for insomnia (1 mg per night divided into four doses as I wake often) and my GP suggested I begin taking it at 4pm. So I do take half of a .5 mg pill. It really helps, but I ultimately feel benzodiazipines are not a good option overall: I am afraid of rebound and/or ineffectivenss over time as well as exacerbation of brain fog. I will try the berries, why not? I do meditate, and just found sitting is too much, so I now lay on a yoga mat. This really helps. I try to meditate for at least 30 minutes. I have copied the information here and will take it to my neurologist appointment today. Thank you Dr. Rob and others! --Syvie

Short repsonse to momto Guiliana and all above: The "all in your head" syndrome (which I experienced from my long-standing GP -- seeking replacement now) is why I made a list of neurologists who should understand POTS/dysautonomia and called them. Disclaimer-- I still got ome doctor who came to the phone who doubted my description -- but I could come in for $750 for a consultation. I found my current Dr. by calling the head of a university department, who referred me. Both spoke on the phone to me at length. New doc is a specialist in MS, but he gets it. I have since found a name on this site who addresses nothing but dsyautonomic diseases, but he also requires a $650 consultation in person. They do accept e-mails. I like my new doctor so much I will consult with him tomorrow about the second guy. It does sound like Navybeans needs help in the endeavor to find a specialist, which is why I suggested an adovcate. Yet, Navybeans, please consider putting your location in your header on a new topic to announce a call for information leading to a specialist. Im brand new to this site, so perhaps someone can write here how "profiles" work. I also think it would help to be armed with one good simple article when discussing your symptoms and concerns with anyone who might listen to you and intervene on your behalf: like those who will see you in your coming visit. PS don't bother going into it with receptionists on the phone -- immediately ask for nurse, PA, or the doctor. Best, S

Dear Navyblue, As a mother and teacher of students your age I think two things are very important right now: 1. It appears you need someone to speak on your behalf to your family. I assume you are living with them. Even if you are not, you are young and need their comfort and support. Is there someone you now know who can intervene in your behalf? If not, it seems you need to try and find an advocate to do so. This person, of course, has to either have a knowledge of dysautonomia or be willing to be educated by you about it. I would suggest a trusted family friend, relative, clergy member, teacher, or medical and/or mental health professional -- or all of the above. I If you are in school you might have resources there. Your community also might have social services with people who may help you. You have a serious disorder that must be taken seriously. Equally important, (or more so) we are all especially in need care and comfort when we are ill. Your family appears to be in denial, or just unable to process the notion of your having an "invisible" illness. This leads to my second point: 2. You appear to be feeling alone and scared (with reason, given the reaction of your family) and, perhaps because of this, you are focusing on your symptoms. This is not a good idea for you are apparently freaking yourself out. You don't have any way of knowing right now if you have a co-morbid disease, or if anything dire is occurring. Try not to dwell! Again, this points to the need of your finding a good diagnostician and medical advocate, who can at least be part of the team mentioned above. A suggestion to find a medical advocate: you might begin with recommended doctors here, and/or put the call out on this site to recommend someone in your area. It takes time. I went on line and then cold-called neurologists and finally got a simply wonderful one: he spoke to me on the phone for half an hour before we met (and then spent two hours with me). If you cannot talk to the doctor when you call, see if you can talk with a PA or nurse in the office. If they are not willing to talk on the phone, see if you can e-mail. A really good doc will talk to you on the phone! Finally, it's a drag you must be an educator and advocate for yourself -- yet seeking help can be a way to empower yourself. In the course of seeking someone to intervene, you will be taking charge, "figuring out your life," and finding a source of support outside of your family to boot! Download what you can that explains disautonomia in simple terms. After all, you found this site! Then.. the more difficult part. I would suggest talking with each family member individually to go over this information. Hopefully, when you do this, you can request they meet with you and your advocate. Perhaps only one family member will do this, but it will be a start. What do you think? All my best to you, Sylvie

I saw your post after just getting off the phone with the receptionist at the Columbia Neurology Institute in NYC (a hike for you!). However, I called because I saw Dr. Louis Weimer listed on this site (I just signed up today) and he apparently is the master of dysautonomia -- including that resulting from toxins/medications, which I think may be part of my story. He can see you in October! It looks like you have an AA referral, which I hope works out for you. Here's my question, related to yours. I also tried to see if I could talk with Weimer, or a PA or nurse to see if would make sense for me to consult. No go. I found my new neurologist by calling NYU and speaking with their top guy (who called me twice!) and who referred me to his colleague. He (Dr. Robert Charlson at NYU) talked with me for about 40 minutes before our first appointment and has called me twice since. I am so heartened by his concern. Yet he specializes in MS -- what to do? I meet for the second time with Charlson Thursday and will ask his advice. However, I am weighing empathy and accessibility with specialization. I would welcome anyone's insight on this. Meanwhile, today and yesterday were the first time I could sit at my desk and type in four months! Thank you Dinet! --Sylvie

Dear Nova, My view is I think the demarkation between "mental" and "physical" illness is, outside the realm of dysatonomia and especially within it, very blurry. In my case, I know my dysautonomia, which came on with a whallop this year, emerged from a traumatic work situation: on top of the fact I struggled with depression and PTSD for years. There is much in the literature about this: look up "allostatic load," or the effects of profound stress: it is highly associated with chronic disease in general, and and dysautonomia is acknowledged in particular. Dysautonomia can emerge from physical or mental trauma, infection, co-morbid syndromes, or seemingly nothing at all! Like you, I tend to blame myself for being dysfunctional now. However, I am brightening, knowing that this disorder is truly out of my hands and head in a way I can truly control. However, this was also true for depression, which frankly, until recently, I handled extremely well. The medical world has created a great rift which is reflected in society. No one chooses or has true contral over either a "physical" or "mental" illness: in our cases, the boundaries are truly blurred. Perhaps your mother created such a stressful environment for you that your were susceptible to your current illness, but maybe not. It is confusing to doctors; it is confusing to us. Yet the origins or manifestations of our illness should not be a source of self-blame. It should not make a difference: we should be treated (and treat ourselves) with compassion and respect. I am working hard to put together a goods medical team -- with some success after eight months of searching. Meditation, in the context of Zen Buddhism, is teaching me a lot. Like how to "detach:" in your case from your mother, in mine from my now former work situation and the preceding experiences that led to my becoming ill over it. I also need to detach from my obsession with my symptoms (not there yet!). We must learn compassion towards ourselves. Try taking care of yourself as you wish your own mother had -- with warmth, sympathy and kindness. It really makes no difference whether our dysautonomia is the result of physical or mental illness and/or trauma, or whether it came out of the blue. We are all in the same boat here, and we need to associate ourselves, in our personal and medical worlds, with those that keep us bouyant and optimistic. I wish you (and all out there) the best, Sylvie