juliegee

Oh, just saw Sue's response! That may be it UNLESS it resolved w/o food. Did you eat to get resolution? Can severe hypoglycemia reverse w/o food? Lactulose also draws all available plasma/water into the bowel. The hypovolemia could have dramatically worsened autonomic symptoms??? If that's the case, you obviously must drink, drink, drink IF you are to tolerate this on a regular basis.

Your symptoms are consistent with an allergic reaction. Be careful with your new med; you may very well be allergic. IF you take another dose & get another reaction; consider an OTC antihistamine, like benadryl, and see if that helps. Sorry this happened to you- scary.

My experience with singulair is very similar to yours, however I take a regular adult dose 10mg. Within 10 mins of taking it, my chest pain (usually worse upon breathing in) goes away. This drug is nothing short of a miracle for me. On a regular basis, this is no longer a troubling symptom. HOWEVER, I still do have rare intermittent periods of chest pain (associated with breathing.) I sometimes have to take 2 singulair and even use atrovent via a nebulizer to battle this. (Albuterol and xopenex did nothing for me.) I don't think that you've grown intolerant to the singulair; but rather that you've got mast cells degranulating (for whatever reason) and that has worsened your breathing problems & your normal pediatric dose is no longer adequate during this reactive period. I might ask your doc about temporarily upping your dose to get you through this. I suspect you will get back to your previous level of functioning. Sorry you are dealing with this. It is frightening. I hope it passes quickly.

True- Mack was severely constipated his whole life- turned out to be a dairy allergy. Once he stopped dairy; he was normal again . Same thing happened to me around age 40. I take 3 doses of Miralax a day now, plus 500mg magnesium. I WISH I was allergic to something Most likely a neuropathy, secondary to my dysautonomia. It's pretty common for many of us.

Jen- SCARY. It also reminded me of the young woman reporter who began speaking gibberish. I believe that ended up being a migraine aura- not stroke- although stroke was surmised early on. INSIST on a full neurological work-up if it happens again. Both my son and my grandmother have written complete sentences in "mirror writing" that look like complete gibberish. (SAMPLE-"gnitirw rorrim.") Check to see if that was the case in your episode. It happens to my grandmother when we play scrabble. She will write "ylferif" and be convinced- NO MATTER WHAT I SAY- that she has written "firefly." This is a one time ocurrence for Mack & intermittent (but rare) for Grandma. Bizarre. My son was ultimately DXed with dyslexia, but (you know, having the DX yourself) it is much more complex than backward writing. True dyslexia involves problems with pheonemic awareness, working memory, speed processing, visual & audio impairments, etc. (Interestingly, MANY of these characteristics overlap with dysautonomia.) You are dealing with something quite different here. You are right to be concerned. Keep a close check on your SENT box & make your doc pay attention if it happens again. eiluj

(((((Issie))))) So sorry you're feeling so hopeless and frightened. Honey, I've been there before. I get where you are Those 'roids can really mess us up. Getting off can set off severe MCA in folks who are susceptible and make EVERYONE feel plain awful I suspect that you will get back to your previous level of functioning if you can just ride out this bad patch. That facial numbness is usually an allergic reaction for me, which might also explain the BP changes, etc. I know you are HyperPots and suspect MCAD, right? What H-1 are you taking? Wonder if upping that for the short term may help? No real advice or insight- just ramblings. I just wanted you to know that I care. Hugs- Julie

Jennifer- I HATE that your docs are so cavalier about end-organ damage to your kidneys. You are such a young woman to be dealing with that. IF POTS or OHT is to blame; for goodness sake, isn't there some way to better treat or control it? Why don't you write a concise synopsis of your condition & E-mail it to ALL of these docs to see if they will see you or have treatment options that you could explore? Julie

http://www.ncbi.nlm....pubmed/20428906 Abnormal overexpression of mastocytes in skin biopsies of fibromyalgia patients Clin Rheumatol. 2010 Dec;29(12):1403-12. Epub 2010 Apr 30. Blanco I, Béritze N, Argüelles M, Cárcaba V, Fernández F, Janciauskiene S, Oikonomopoulou K, de Serres FJ, Fernández-Bustillo E, Hollenberg MD. Source Department of Internal Medicine, Valle del Nalón Hospital, 33920 Langreo, Principado de Asturias, Spain. ignablanco@yahoo.com Abstract Formalin-fixed, paraffin-embedded skin tissue sections were collected from a matched cohort of 63 fibromyalgia syndrome (FMS) patients and 49 volunteers from the general population with both alpha1-antitrypsin (AAT) normal and deficiency variants. These tissues were examined for the expression of the broad-spectrum inhibitor AAT, the serine proteinases elastase and tryptase, the proinflammatory cytokines MCP-1 and TNFα, the endothelium biomarker VEGF, and the inflammation/nociception-related receptor PAR(2). The most relevant finding of the study was a significantly increased number of mast cells (MCs) in the papillary dermis of all FMS patients (greater than or equal to five to 14 per microscopic high power field) compared to zero to one in controls (p < 0.001). MCs strongly stained with tryptase, AAT and PAR(2) antibodies, exhibited a spindle-like shape and were uniformly distributed around blood vessels and appendages. MCP-1 and VEGF expressed weak/moderate positivity in most samples, with a higher expression in controls than in FMS patients (p < 0.001 and 0.051, respectively). No differences in elastase and TNFα were found between both groups. Moreover, no histological differences were found between samples from AAT deficiency and normal AAT phenotypes. Our results indicate that FMS is a MC-associated condition. MCs are present in skin and mucosal surfaces throughout the human body, and are easily stimulated by a number of physical, psychological, and chemical triggers to degranulate, releasing several proinflammatory products which are able to generate nervous peripheral stimuli causing CNS hypersensitivity, local, and systemic symptoms. Our findings open new avenues of research on FMS mechanisms and will benefit the diagnosis of patients and the development of therapeutics.

I concur with Thankful (Janie)- I was think small fiber neuropathy, too.

Oh Puppy- YAY!!!!!!!! So happy for you. That's how we felt after my son saw Dr. Rowe. It's so confirming after you've been disbelieved for so long. I have heard wonderful things about Dr. A. I am certain you WILL feel better & be able to get back to school soon. Hugs- Julie

You might want to look into the potentially long term side effects of reglan. My son has a tremor, after being on it for 6 months. (That was over 6 years ago.) Lawyers are currently seeking patients who've taken it because of the high percentage of long term side effects. You could try Ery-Ped or Domperidone. In my opinion, both are much safer for the GI motility issues. Are you having tachy during the episodes? Ever gotten a BP during one? Check out this article http://hyper.ahajour.../45/3/385.short

Kazoo- You are a very lucky girl. With so much input, I feel like you are the patient of-the-episode with a bunch of House-wannabe's Trust me, you will not find a more helpful or caring bunch as we've been there...and back. Too much coffee- Giggle Julie

Carol, Interesting to hear your input from an insider. It is infuriating. Last year, I was having such severe Reynauds, that I was in danger of losing fingers/toes. I couldn't tolerate any treatment, but my rheumy wanted me to try Viagra. Guess what? NOT covered by the insurance company. I was actually advised to have my husband get a prescription so I could KEEP my body parts Let's see, your husband can suffer the life threatening damage of sky-high glucose, Lenna's son can starve to death, and I can lose my digits (according to the insurance industry) BUT men with ED are covered.... WHO makes the decisions, hmmm? KC, glad to hear it is helping- but clearly not enough. The symptoms you are describing ARE those of poor motility. I wonder if it's worth trying Ery-Ped 400 or 800 mg at a very low dose OR domperidone. My heart breaks for you. I remember watching my son starve for the same reason. I bet a local compounding pharmacy can make the domperidone OR you can order it from overseas. Look into which will be cheaper. One thing I know, it WON"T be covered by your insurance. Grrrrrrrrrr. Hugs- Julie

Sounds like Lilybits is describing telengiectasias & petechiae http://en.wikipedia.org/wiki/Petechia http://en.wikipedia.org/wiki/Telangiectasia I get petechia around my eyes if I exercise too hard and my face, torso & legs also have telangiectasias on them. My dermo has zapped the ones on my face with a little laser. Weird.

Kalamazoo from Alaska??? LOVE your name. My husband & I met in Kazoo during our undergraduates studies. Good times Have you ever tried taking an antihistamine (like benadryl) during your "panic attacks"?

Hey Bren, I don't know. If you can't tolerate an antihistamine....I'm not sure WHAT doxepin will do to you. It's one of the biggest guns in the masto world. Have you tried all of the antihistamines- even claritin & allergra? (they are often considered to be the mildest in terms of side effects.) Like you, my blood pooling and all of my autonomic stuff improves on antihistamines. Christy's son is on EXTREMELY high doses of doxepin, around 20 mg is what most masto patients end up with. I would proceed with extreme caution. Take it at a time when you have assistance should you need it. It totally knocked me out at first. I took it at a time when I was on very high doses of antihistamines. I grew to tolerate it well and it helped ALL of my symptoms greatly. I hear that you need relief, i just worry that doxepin might be overkill for you. Check with your doc or pharmacist to ensure that it is OK (I think it is) to cut the 10 mg in half or even quarters. Take it at night (or when you can sleep) & be prepared for the best sleep of your life Let us knowhow it goes- Julie

((((((((((HIS)))))))))) Oh Honey, you are most welcome. And, you are 100% correct that your autonomic illnesses affected your ability to focus and remember things- which makes it pretty hard to be a student . Strattera, your birth control, and even the amitryptoline certainly DID improve your autonomic symptoms. So many of us stumble on a med regimen without ever getting a proper DX. Are you sleeping OK? Florinef is typically taken early in the day as it can interfere with sleep. Drink, drink, drink all you can and use salt liberally. Actually at your dose of florinef you should be on salt tablets. Thermotabs are available at most pharmacies, but you may have to ask the pharmacist to order them. My son took two with each meal when he was on 0.2mg of florinef. I hear that you don't have insurance now, but you need to be aware that florinef can drain potassium. Getting your electrolytes checked, at least once, would be a good idea. In the meantime, a daily banana, orange, or baked potato is a necessity. I agree, Dr. Rowe's brochure is a treasure. EVERYTHING we need to know is there. Share it with your parents, doctor, teachers, etc. We believe you here and are cheering for you to get better. Gentle Hugs- Julie

Numerous studies have found over 90% of CFS sufferers have an autonomic dysfunction- either POTS or NMH. If you don't experience fatigue, Jangle, you are VERY lucky http://www.nymc.edu/fhp/centers/syncope/cfs.htm

I agree with you all. POTS is just a symptom. Docs should definitely be trained on how to recognize it and begin ruling out the most common etiologies.

Wow, the more I read- pretty exciting. This is the 3rd independent study to get the same results. Adds credibility to theories like Martin Pall's: http://www.thetenthparadigm.org/

The term Chronic Fatigue Syndrome/CFS is often used interchangeably with dysautonomia. A new study shows that oxidative stress may be behind our symptoms as measured by increased cerebral spinal fluid lactate: Increased ventricular lactate in chronic fatigue syndrome. III. Relationships to cortical glutathione and clinical symptoms implicate oxidative stress in disorder pathophysiology Dikoma C. Shungu1,*, Nora Weiduschat1, James W. Murrough2, Xiangling Mao1, Sarah Pillemer2, Jonathan P. Dyke1, Marvin S. Medow3, Benjamin H. Natelson4, Julian M. Stewart3, Sanjay J. Mathew2,5 Article first published online: 27 JAN 2012 Chronic fatigue syndrome (CFS) is a complex illness, which is often misdiagnosed as a psychiatric illness. In two previous reports, using1H MRSI, we found significantly higher levels of ventricular cerebrospinal fluid (CSF) lactate in patients with CFS relative to those with generalized anxiety disorder and healthy volunteers (HV), but not relative to those with major depressive disorder (MDD). In this third independent cross-sectional neuroimaging study, we investigated a pathophysiological model which postulated that elevations of CSF lactate in patients with CFS might be caused by increased oxidative stress, cerebral hypoperfusion and/or secondary mitochondrial dysfunction. Fifteen patients with CFS, 15 with MDD and 13 HVs were studied using the following modalities: (i) 1H MRSI to measure CSF lactate; (ii) single-voxel 1H MRS to measure levels of cortical glutathione (GSH) as a marker of antioxidant capacity; (iii) arterial spin labeling (ASL) MRI to measure regional cerebral blood flow (rCBF); and (iv) 31P MRSI to measure brain high-energy phosphates as objective indices of mitochondrial dysfunction. We found elevated ventricular lactate and decreased GSH in patients with CFS and MDD relative to HVs. GSH did not differ significantly between the two patient groups. In addition, we found lower rCBF in the left anterior cingulate cortex and the right lingual gyrus in patients with CFS relative to HVs, but rCBF did not differ between those with CFS and MDD. We found no differences between the three groups in terms of any high-energy phosphate metabolites. In exploratory correlation analyses, we found that levels of ventricular lactate and cortical GSH were inversely correlated, and significantly associated with several key indices of physical health and disability. Collectively, the results of this third independent study support a pathophysiological model of CFS in which increased oxidative stress may play a key role in CFS etiopathophysiology. Copyright © 2012 John Wiley & Sons, Ltd. http://onlinelibrary...m.2772/abstract

Hi Claire- Sorry to hear about your ambulance ride- VERY scary. I've had pneumonia (with my MCAS/MCAD) and it was awful. I feel for you. Despite Aaron's kind words, I'm no masto expert, just a fellow sufferer. But, I think Ana's got it right- the diagnostic criteria still has a ways to go. Don't be discouraged by your normal levels. Both tryptase and methylhistamine are notoriously unreliable as far as proving MCA & both have such a short shelf life. It's almost like finding a needle in a haystack- if you can get the RIGHT testing done, the RIGHT way at the RIGHT time. Pay attention to whether or not you are improving with MCAS/MCAD meds. If so, chances are that's what you are dealing with. Other things you can have tested are your prostaglandin D-2 and heparin levels. Also, there is a high correlation between norepinepherine and MCAS. In the meantime, work with a physician on tweaking your meds to become as functional as possible. Hugs- Julie

Hopkins is where my son was DXed too. NMH is their preferred term- but NCS and VVS are the same thing. Dr. Rowe is really a ped & he runs his own clinic, The Chronic Fatigue Clinic at Hopkins. He is something of a "House"-type and was given all of the ped cases that no one could figure out. Not surprisingly (to us, at least ) all of these odd-ball cases had one thing in common- autonomic dysfunction. Here is a WONDERFUL informational brochure, written by him. It is chock-full of information, very comprehensive. I learn something every time that I read it. It even lists most (if not all) of the dysautonomia meds, when they should be used, how they should be used, what doses, etc. My son's local ped found this extraordinarily helpful. And, it applies beautifully to us grown-ups too: http://www.cfids.org/webinar/cfsinfo2010.pdf Julie

Hey Bananas! You are way more well-versed in this than I am; BUT i thought I'd share our experience. Before my son was officially DXed, he was incredibly sick and did use bio-feedback to help deal with the frequent nausea/vomiting/fainting. It WAS helpful. He was so sick that he couldn't even ride in a car or plane w/o constant vomiting. His psychologist gave him the biofeedback laptop to use on the flight to Hopkins and we are convinced that It's the only way that he actually made it there The problem was that it only helped when Mack was actively doing it and it took 100% concentration. It just isn't feasible/possible to do consistently. That being said, so HAPPY it's helping you!!! Your new doc sounds great. I appreciate your sharing & can't wait to hear more about your progress. Hugs- Julie

HIS- Looks to me that you have BOTH POT and NCS/NMH/VVS- all names for the same phenomenon- dropping BP that can lead to syncope & has many times in your case Sorry. How is the florinef helping? Seems like that would be a good drug for you. You need to take lots of extra salt & fluid for it to work. What dose are you on? I hope you get to see a dysautonomia specialist to help you understand things. Typically, when the patient faints (and is supine), the BP is restored, HR is normalized, and the patient is once again conscious. IF that is NOT what is happening during your episodes, you should further explore things. All the best- Julie