Kellysavedbygrace

Christy, I am so sorry to learn about your daughter too. How old is she?

Dizzy, what nutritional deficiencies did you have? And are there any common ones associated with gluten ataxia? Forgive me if you've answered this before.

Interesting. I am so hypersensitive to sensory stimuli. I have not associated it with these things before but motion, activity around me, lights, sounds all trigger me for a crash. Next time I'll pay attention to whether or not there was sensory stimuli that is involved.

Here's the link: Check out this video on YouTube:

I bet it is. Thanks for the link. Palm beach is on the East coast and I'm on the West coast of FL but I bet I can find someone. In the fall of 2011 my hubby called Dr. Rowe, actually got him on the phone and discussed my case with him. Unfortunately he only treats pediatric patients so he recommended I see Nancy Klimas in Miami (which I haven't done yet but haven't ruled out either.). They both specialize in CFS. Btw- Dr. Rowe has a great you tube video about CFS and Orthostatic Intolerance.

Dr. Peter Rowe at Johns Hopkins recommended to my husband that I try CS therapy. I've had many massages and always ask about it but the people I've met so far don't really know how to do it. I've thought about looking into finding someone locally and have heard from a therapist in Idaho that there is a massage school that specializes in this form of therapy somewhere here in FL. In the meantime, when I am crashing hard sometimes my hubby or daughter will do a massage of my neck, spine and sacral area that puts slow, firm, non-moving pressure around the sides of my spinal cord. It really seems to help me relax. Don't know if it is anything like CS therapy but I do notice I am most effected by the neck and sacral areas.

That is wonderful news! Can you explain what and why you squeeze the Vit D into food? I supplement with Vit D and have not noticed any improvement. It has been off and on low in my blood work.

I'm in the Tampa Bay region of Florida (about 8 HR drive to PCB) but I see Dr. Thompson every 3-6 MOS so I do get out that way regularly. PC is about a 2 HR drive from Randy Thompson's office. I'd suggest calling today and making the first possible appt. (probably several mo wait) well worth it though- then you could schedule a visit to the area and at least get established w him as a pt. Like many of us he has struggled with his health and has had a few times in the last 2 years when he was not accepting new pts. Can't say enough about him. The only doc who is really an expert in treating Dysautonomia. We need to figure out a way to clone him. I do have a friends who vacation regularly in PC. Great location to relocate to.

Difficulty with breathing is my scariest symptom. This is not a problem with obstruction or heart/lung functioning (although early on I was convinced it had to be heart/lung related.). I suspect this is a central nervous system issue with two specific symptoms: 1. I will forget to breathe, realize it, then have to consciously breathe for a period of time (usually 1-30 minutes) where the majority of my thought process is focused on taking my next breath. 2. I feel I'm not getting enough oxygen when I breathe. Although my pulse odometer shows normal readings (as mentioned above) my body feels starved for oxygen. This feels like I'm dying and I have to keep telling myself, "this is just Dysautonomia. I'm not dying. I will be ok." I find this happens when either I'm having a bad reaction to a medicine or chemical exposure or when I'm having a particularly bad sympathetic nervous system crash. Although you should check w the doctor about meds, I agree with the above suggestion of Klonopin. (don't know why you stopped it before but you may consider trying again especially in a low dose multiple times a day.). This helps to stabilize the mast cells (including histamine release,) contol oscillations of the heart and slowly relax the nervous system.

Not in the city but just an hour or so away at Yale, in CT is: Philip Askenase, MD, Chief Section of Allergy and Clinical Immunology Department of Internal Medicine Yale University School of Medicine 333 Cedar Street New Haven CT 06520 Email: philip.askenase@yale.edu Tel 203-785-4143 Fax 203-785-3229 Although I know nothing about him, He sits on the medical advisory board for the Mastocytosis Society and I suspect would be up on proper testing for MCAD.

Rich, a comment and a question: 1. After reading what I did above about your reaction to animals and I'm reminded of your symptoms I would not rule out MCAS just because you didn't respond to H1 and H2 blockers. PM me if you want more info on why. 2. Is it possible that the reason the QSART doesn't pick up SFN in so many is because like many other autonomic reflex tests it is looking for an absence os sweating and does not recognize an overreaction to sweating? (figure w all your research you would know!)

Your thread comes at a perfect time. I'm just wrapping up a 4 part-20 day each- exercise study looking at exercise and how it effects me. Does it cause post exertional crash? Does upright or recumbent help? Level of intensity? Frequency, etc. For me, exercise has been a double edge sword, helping me this past year to become more functional but also causing me to crash harder and longer. I am planning to post a thread on this soon but clearly we are all different when it comes to exercise- both in terms of where we are on the dysautonomic continuum (mild- severe) and in terms of what other conditions coexist (autoimmune, CFS, mast cell, etc.). It is interesting to me that while most doctors agree we all need exercise, there is a vast disparity between what is reported in clinics on this topic. For instance, Dr. Ben Levine's well known study on POTS and the "grinch" heart advocates for gradual progression from recumbent to upright as well as less frequent and slow to more often and strenuous. Clearly this works for some POTS patients but not all. Dr. Randy Thompson, in Pensacola, FL told me that he has sent nearly a dozen patients to Dr. Levine to try his exercise program and not one has been able to successfully complete it. Meanwhile, Dr. Peter Rowe recently published a report demonstrating how exercise (specifically leg lifts at various degrees) attenuated the symptoms of patients who have CFS, which as you know commonly coexists with POTS. Dr. Lawrence Afrin, MCAD specialist, confirms exercise causes mast cell degranulation which can exacerbate symptoms of MCAD yet encourages his patients to find the right balance. I'm thrilled you have found an exercise that works well for you. It is especially interesting that you've noted a reduction in HR following stair master exercise. I wish I could say I've found anything (other than BBs which I can't tolerate) which help to reduce my HR. Nonetheless, I grey out most anytime I do upright exercise of any kind other than mild walking. And I am particularly unsteady on any upright machine (treadmill, upright bike, eliptical, etc) with balance difficulties. So, is the stair master is great for you, yes. is the stair master a great fit for me, no. The more I learn, the more I realize how little I know. In fighting to regain a more normal life, I have to become the researcher and the scientist- identifying hypotheses, and slowly (one at a time) testing them to figure out what works best for my body. You have done that with your exercise (which I suspect is the most critical treatment for us all). Good for you!

One of my top symptoms is a chemical burn in my blood and bones (sometimes skin.). Not so much my muscles unless I have been working out. This feeling/sensation has steadily increased in frequency and occurrence as my condition has progressed. It feels like a chemical burning and is Followed by periods of crashing/ very symptomatic w fatigue, brain fog, hypersensitivity, baldy aches and attenuated tinnitus. I'm quite confident what is happening in my case is a symptom of mast cell degranulation. This has been confirmed by my mast cell doc. That may be an avenue for you to rule out. Here are a few questions I'd ask: - do you have symptoms in most or all organ systems? - are you highly sensitive to medicines, chemicals and fragrances? - have you ever had flushing? Upper body turns bright red w a chemical burn feeling?

You may already know about this but just in case, Niacin is a primary trigger for MCAS related flushing. Interestingly when tested for nutritional deficiencies I had significantly depleted levels of Niacin in my blood work. After taking a niacin supplement I started getting bouts of cutaneous flushing. Now that I am no longer taking the supplements I still flush but it is not as severe and does not reach the cutaneous level (meaning I get the severe chemical burn feeling in my blood and bones and all the associated symptoms of deep mental fogging, fatigue, etc without the bright red upper torso.). So now I am deficient in Niacin but now don't turn bright red when I flush. Don't know much about hot flashes but suspect they are different in their chemical/hormonal trigger.

Yes, that's the one with the powder. As you probably know they heat it not to look at the body's resting temp but the body's ability to cool itself when heated, an autonomic function. I was supposed to have this done but due to a scheduling problem I did not have it done at CC. The only other place I know that does it is Mayo, MN. Have tried to find other locations but to no avail. Actually doesn't matter much- I know I sweat abnormally and can't tolerate the heat. When I work out the only place I consistently sweat is the inside of my elbows. Funny...

Bananas, I'm not sure what the results of the abdominal binder study at Vanderbilt were. I was referring to my change in BP. I never thought to do this until my visit at Vanderbilt and then started testing my BP with it on and off. No wonder I always have a much higher BP when I go to a doctor's office- my SPANX are always on!

What clinical data are you suggesting is collected during battery of tests listed on #1? Re:#2: this sounds like the Thermoregulatory Sweat test offered ay Mayo and Cleveland Clinic. But Rich, I know you know about that test so you must be thinking about something different.

I wear the SPANX mid thigh shaper (covers just under my chest to mid thigh- is "Super Duper" control). I literally don't leave my house without them on. I've bought several pair and can't imagine life without them. I do not wear them when resting or lying down. At Vanderbilt, during one of the trials they used an uncomfortable abdominal binder that was far less effective for me in testing. Because SPANX is expandable it we were not able to get a measure of how much pressure it puts on my abdomen. But it consistently raises my BP by 10+ pts. Abdominal binders are not for everyone but for me they are a lifesaver. I can think more clearly and am less lightheaded with them on. Funny side note. I grew up with Sara Blakely, the inventor of SPANX. Now I'm so thankful for the work she has done.

So Rich, I'm curious about what piqued your attention in this paper. At first glance it seems diabetic patients who do a good job of managing their glucose levels are putting themselves at risk for autonomic dysfunction. And further makes me wonder if my sympathetic overactivity is helped when my blood sugar levels are low. It is interesting that we tend to do well with frequent small meals which would help us keep our sugar levels fairly well balanced but frankly, other than a few cursory glucose tests in my blood work I haven't given much thought about my blood sugar levels.

In my region of FL there is a large elderly population. My cardiologist has seen 3 POTS patients. 2 are also Parkinsons patients. Then there is me.

My hubby grew up on a farm. He was miles away from any friends and a get together after school or in the summer was very rare. He reminds me of this often when I start to feel guilty for not keeping up with the neighbor kids who are doing soccer, gymnastics, parties,playmates, etc. My four are all swimmers so as much as I can (either I take them or have another swim mom- who has room in her car for 4) will take them. Some days we miss practice but bc they do this sport together it is much easier than taking kids to various places at various times. For now it is the only extra curricular activity we have going on outside of church and school. Don't know if you have some sport/hobby that is close by that doesn't require attendance every practice. If you are like me, even investigating that would be a lot of work. A couple ideas I've considered but have not yet done are: -have a music teacher come to the house and give lessons. -have a college student from church come over as a big/brother/big sister One thing I make sure to do is live life with them when I feel good. I've actually pulled kids from school early to go get an ice cream or go shopping on those rare days. Somehow, if I do special things for them when I do feel good it makes me feel like I'm giving them my best. I also try to keep in mind that they don't really need soccer. They don't really need parties or play dates. Most kids today are too busy- and if my kids aren't running around as much as others being super busy it will be ok. What they really need is a mom and/or dad who love them, are interested in their interests and talks with them.

I have 4 kids- 15, 13, 11 and 9. I was homebound for the first 9 mos and now I get out but my driving is very limited and some days, like today, I'm in bed all day and driving is out of the question. It may be different when you only have one at home but I can tell you that this illness has caused both challenges and blessings for my children. Not sure what info would be most helpful. Maybe you can help me understand your situation more. How old is your youngest? Does he go to school, have outside activities, neighbor friends.? How active is dad in his life? Do you have a support system of family and friends to help?

Occasionally I get HRs between 180- 200 (hit 200 twice and have had 6 experiences like this the past year.) All have been associated with either an adrenaline surge/stressful situation or a hot shower. Like you described at that point I'm hyperventilating and have difficulty standing. In my case the extremely high HR is reduced by lying down. I might still be tachying after lying down and might still feel awful a while but wont stay in that high range. In POTS, lying down should improve your cardiac symptoms. (may not make them immediately all go away as your body needs time to recover) if, however, you have no improvement in symptoms while lying down I'd question whether POTS is the correct diagnosis. An unlikely, but possible situation you might want to have your cardiologist rule out is an accessory pathway in the heart. In rare occaisions this can be going on as well causing the high HRs. It can be ruled out with a heart monitor. I ditto Alex's suggestion to check with your pharmacist about possible reactions to the many meds. I imagine, like you, I have many different docs prescribing different things so I've developed a good relation ship w my pharmacist and ask his opinion before starting a new med. Docs don't tend to be strong in this area but pharmacists are trained to recognize possible interactions or possible overdosing in drugs of a similar class. As far as calling 911- This is a judgement call. It's hard because what I often experience during a POTS crash FEELS like I'm dying so I want to get help. The reality is, if I go to the ER what are they really going to do? Run a few really expensive tests, give me a bag or two of saline and tell me they can't find anything wrong? And the reality is, I'm not dying, it's just the Dysautonomia. So that's what I do. I lie in bed, sometimes crying in misery, and tell myself- "I've felt like this before. I have Dysautonomia. I'm not dying even though it feels like it.". Now if I were to experience a different symptom- new- like throat closing up, severe chest pain (beyond what I've experienced before) or other new symptom I probably would call 911. But chances are, you are not dying- it's just Dysautonomia. When I'm crashing- I give into it. Often will spend two days in a quiet dark room flat on my back pushing salt and fluids and watching Netflix. If I'm not better in 2 days I go into my docs clinic for 2 liters of saline. (I do that about 1 a month.). So I crash a lot. (my BP and HR are erratic- sometimes high and sometimes low.). I try my best to relax and not worry. God bless. -K

Use, what specific symptoms are ou having that seem to feed each other? And can you describe your most prevalent symptoms overall?

Yeah!!! I'm so happy to hear this for you!