Sarah4444

Reading these posts, it makes me wonder if this has anything to do with an article I read about a rare kind of anaphylaxis that occurs in response to the hormone levels at the outset of menstruation. I also stopped having these episodes once I started a low dose of doxepin before bed.

Maybe what he is saying is that with Hughes Syndrome, your genetics make you more likely to be vulnerable to hypercoagulation, but it takes something like an infection to trigger the process?

I also suspect that because of the emotional trauma of bad doctor's appointments, many of us minimize or don't discuss some types of symptoms, which is a shame as it limits the knowledge that could be gained about our condition. For instance, when I was really sick I got major symptom exacerbations from even relatively mild sensory stimulation, and even now strong emotional reactions cause symptom exacerbations for me...but I don't feel like there's any point in talking to doctors about this, because it sounds so strange and I don't want to risk anyone thinking I'm nuts. The sympathetic nervous system is an interface between our bodies and environments, and a lot could probably be learned about the physiological effects of stress if we were dealing with knowledgeable, open-minded caregivers.

Given how unpredictable and awful our symptoms can be, I think they should look at why we are tough enough not to have been driven crazy by this, rather than the opposite.

My worst episode was this summer, also during the night. It was as though I got cold but instead of the normal kind of shivering that would happen with cold (which is theoretically controlled by the autonomic nervous system), I was shaking like crazy. This was during a time when I was having terrible POTS and MCAD symptoms, waking every night with a falling feeling then tachycardia, and during the day having bp drops and SVT while supine.

The only explanations I could come up with were that the normal shivering response is somehow exaggerated/messed up due to ANS dysfunction, or maybe it's another response to cerebral hypoperfusion. I haven't even bothered telling doctors about this episode because since I started the meds I now take, I haven't experienced it again. On the MCAD sites there are some articles about anaphylaxis related to changes in hormone levels - I have no idea if this could be connected.

Detrick7, the neutorologist I saw said that with so much cerebral oxygen deprivation it isn't surprising that strange things like this happen. She wanted me to try domperidone (for dizziness apparently, although I think it's usually for GI motility) and then maybe Mestinon. I am still fiddling around with MCAD meds trying to get those symptoms settled so I haven't tried the others yet. I wanted to see the autonomic doctor first - I sort of feel like each doctor I see has a different drug they want me to try and I don't know how to proceed. I have improved though, on the meds listed below. Sorry I don't have an answer for you.

I have lots of pain, mostly in my lower body - low back, hips, knees, legs. It's worse after things like prolonged sitting, walking up stairs and around the beginning of my period.

If anyone has read these, can you tell me why the chronic infection is a necessary part of his theory? Wouldn't having APS, an autoimmune condition, be enough to explain the increased tendency to coagulate even without the chronic infection? (Although it does make sense that infections would trigger/exacerbate epiosedes of coagulation, I just don't get the chronic part).

I also get a hot/burning sensation with facial flushing. It can be really bad after eating or standing too long, but now I seem to be flushed a lot of the time for no reason I can identify. Oh, and I have also had bad episodes around the time my period starts, which can be accompanied by whole body itching, shortness of breath and faster than normal tachycardia. It does seem to be helped by the MCAD meds.

Like Friedbrain I also have had the uncontrollable shaking/teeth chattering in response to being cool, but it doesn't have to be very cold. I had it this July at night when I tried to go camping (tried and failed). I also frequently feel like my arms or legs are numb and tingly. This is particularly bad when I have the feeling like I would get if I tried to blow up balloons or hold my breath too long, so I associate it with lack of oxygen to my brain.

Have you had your thyroid checked?

I'm so sorry to hear that Christy. My mother always said that some doctors operate on the "if you don't know the answer, blame the patient" principle and I guess it applies across the board. It may be easier when the patient can be stereotyped in some way (hysterical women, lazy teenagers). It takes so much energy just to manage day to day with this illness, I wish they would realize(or care) how much harder their behaviour makes things for us.

Hey Tennille - I only started to think about MCAD after Julie told me about it, and because I realized in retrospect that I had been having lots of trouble all summer with skin itching at the same time that I was having awful "POTS attacks". For me, if it's very severe my blood pressure goes really far down, my heart rate clunks over to 200+ bpm, I get itchy, flushed, and short of breath. Sometimes I just get the last three and I don't notice the severe bp collapse/tachycardia to the same extent. I also had an awful feeling of impending doom during these episodes. I still have lots of episodes of flushing and feeling crummy after eating, if I stand too long, if I try to concentrate too long, when it's hot or if I get upset. It's very weird.

I am excited that you are seeing Dr. Raj. If anyone will know about this stuff and have an idea about research that might be going on or treatments, it seems like it would be him. My only small experience with him is that he was kind enough to answer an email I sent him looking for an autonomic doctor up here in Canada, which led to my diagnosis (still haven't seen the actual doctor yet, just had the TTT). Keep us posted.

I was also wondering how we could potentially contact Mr. Lassesen. The only contact address I found was on his professional website, www.lassesen.com, under the privacy statement, and was listed as admin@admin.com. It is interesting that he mentions NMH as a symptoms of CFS on his original CFS website. A lot of the stuff on the site though, is his personal experience and opinion.

I just wanted to add my two cents. Just for kicks the other day I counted the number of different doctors I have seen in my life and I stopped counting at 44. To be fair, most have them have been quite nice, if ultimately unhelpful. The worst of all though (so far) is my current cardiologist. I went to see him when I was terribly sick this summer, and brought along my husband and my mother (who is a doctor). He still treated me like dirt. What is it with cardiologists?

Does anyone think that this pattern of being dismissed and treated badly is at least in part due to the fact that POTS and many of its related conditions are more prevalent in women? Isn't it a form of malpractice or systematic discrimination to mistreat and ignore an entire disabling health condition due to gender bias? The whole thing gets me so mad. I know I am a competent, intelligent person who happens to be sick and am tired of going to see a doctor who invariably leaves me on the verge of tears.

hilbiligirl, have you looked into the MCAD/POTS connection? What you described reminds me of how I feel when I'm really doing poorly. Thank goodness for this support forum. My New Year's resolution was to not murder any medical specialists this year.

My brother was diagnosed with and treated for auditory processing difficulties as a child. I think a lot of people who are intellectually normal or above probably get missed on the spectrum.

Christy, this is just a thought for you. I had terrible nausea from early 2009 until the fall of 2010. It was so bad I couldn't function at all in the mornings and I had trouble eating a lot of the time. It has gotten much better since I started taking Zantac and the other MCAD meds (but I think it was the Zantac that really helped my GI troubles). I also have a history of migraines, but I'm pretty sure that in my case they were not causing the chronic nausea. Good luck to you both.

autumn, I can also relate to feeling like a hypochondriac with the long list of strange symptoms I get. I bring the article that Julie brought up to all my appointments now, and I try to isolate the symptoms sets that are bothering me the most and that are likely to make sense to the doctor I am seeing. However, I also mention other symptoms, which sometimes seems to annoy them, but I want to give them the sense that they are only seeing part of a bigger picture.

Don't let people make you feel like you are making this up or exaggerating just because you are young. When I was in my late teens/early 20s I had all kinds of symptoms but ended up giving up on doctors and just dealing with it myself the best I could, because back then POTS hadn't even been identified yet. You need a clear picture of what is going on as you get older, and the only way to get this is to insist that they believe you and treat you, even if what you have is unusual and makes them uncomfortable due to their lack of knowledge.

If you don't mind, let us know how it goes after you see Dr. Raj. I really like the articles he has written - like Dr. Grubb, he seems to really understand the impact that POTS has on our lives. I'd be interested to know what it's like to have him as a doctor.

Are you having any luck fighting the low-grade anaphylaxis? Does Benadryl help you?

I have lots of trouble around the beginning of my period. Before it starts I have more OI and lots of pain, then I seem to also have the strange anaphylactoid episodes on day 1 and 2, especially at night, with icreased skin itching, flushing, trouble breathing and tachycardia.

Nela, have you looked into the mast cell stuff? People with MCAD report things like frequent urination, sinus infections, hives (I think it's called Cold Urticaria when it's caused by low temps). Take a look at www.tmsforacure.org or one of the mast cell forums and see if it helps you make any sense of your symptoms. I belong to the Canadian Mastocytosis Society and find their forum well organized and easy to use. MCAD is also connected to hyper POTS, which would explain your highs and lows - if you'd like a link to the article about this, let me know. The main author's name is C. Shibao I think.

Lance, my blood pressure is almost always normal when I check it, but it often falls briefly but signifcantly when I stand up or after I have been standing for a while. Whenever I catch a very low reading I take it again and it has recovered.

Hi Jeannika - Stress is one of my worst enemies, and I find that meditation helps me. Long ago (before I had labels for what is wrong) I read Jon Kabat-Zinn's book "Full Catastrophe Living" and started using some of the techniques he recommends. I think there is a huge overlap between anxiety/PTSD symptoms and dysautonomia as well as MCAD. I have found I have learned to "manage" my emotions because I am super-sensitive and feeling stress makes my physical symptoms worse. In times of trauma or stress so great that it cannot be managed, my health has deteriorated. I am finding the process of being diagnosed very interesting, because it is giving me logical, physical explanations for many things I have felt for years - for instance, on my TTT after being tilted for 10 min my adrenaline levels were 26 times the upper level of normal - no wonder I have trouble sleeping, feeling wired, etc.

I tend to minimize the psychological impact of my medical condition because I am just starting to find doctors who understand and believe what I am saying when I describe my symptoms, and I am afraid of being labeled with a mental illness and dismissed. I think this is a shame, but stigmas are still very strong, and there is also a strong impulse to "blame the patient" when doctors don't understand what is going on. That being said, I hope this changes, because we are an interesting population from a neurotransmitter standpoint, and I think studying us might give some interesting insight into some other disorders.

So sorry to hear about your dad. My cousin also has lymphoma right now. I wish I could help.

I hope you have some success with your doctor, too. What a frustrating process this is. Let us know what happens, and good luck.