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Today was interesting on the Zantac (150)and Zyrtec (10…lowered the does). I didn’t have any hot flashes at all after the z and z in the morning until 5:30 this evening! I have been having them for ages (I am 2 years past meno) and nothing stops them.
So I am wondering why would antihistamines stop hot flashes???
Has this happened for any of you? Also, I noticed that I made it through a 1 and a half hour stressful conversation and I was totally clear headed and focused the entire time! That is a total first for me.
Also, I am wondering as they came back after about 7 hours, maybe the z and z wore off?
Fascinating thread, I too have this. I noticed it when putting up Christmas trees…my arms are all welted for a while, and my husband’s arms and hands are fine.
I just tried it now, but only red lines, no welts. But I am also trying out the H1 and H2 antihistamines yesterday and today, so would that affect it?
Dr. Diana, you mention you worship at the Zyrtec alter twice a day… does that mean you take a double dose two times? We are trying Zantac 150mg every 12 hours, as doc said, and then doubling the Zyrtec. But she didn’t say how. I assume it is 20 mg instead of 10 only once a day?
Today is day two.
Terri LynnJuly 6, 2012 at 9:16 pm in reply to: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. #2550
No problem : )
I am sorry to hear about your 6 yr old grandson suffering! I too weep inside for the little ones, and for my son. He should be out having fun with people…meeting girls, finishing university (he entered at 16!). I am so thankful for Dr. Diana and all her hard work to help us find answers.
Thanks for the video idea! I think that might really help.
Terri LynnJuly 6, 2012 at 9:05 am in reply to: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. #2548
Thank you for your response Dr. Diana,
Austin has not been seen for dysautonomia or mast cell disorder. Our docs would not even consider such things. Any family that presents with multiple issues that are odd, get the “look”. We have had the “look” many times. They would be very happy to put us all on depression/anxiety drugs and have done with it. Or so they think. Even though my son went through all the “proper protocol” for that and took every drug they asked him to take, with absolutely no effect (negative symptoms or positive). That is why I am waiting for the EDS conference and see if we can find a recommendation for a doc who could see him for this. I don’t have the strength to start from the bottom and work my way up anymore. I am 53, and I have been doing this all my life. So we will wait for August.
I just finished reading your book, and Austin has just begun it. I learned much, but didn’t understand it all. So I am still working on watching all your videos. I have been wondering if I can just start Austin on the two antihistamines and see what the response is. Although he almost never responds to prescription drugs. We have had a number of P450’s done for him, and there seems to be evidence of this. But I think there is more to it.
And thank you for reminding me of the magnesium! I do have to work at getting him to take the baths, and the “Calm” product we use as well.
Anyways, off to do more research.
Terri LynnJuly 6, 2012 at 8:51 am in reply to: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. #2547
Thank you for your help. I should let you know my son is 19 years old, so he is technically an adult. But yes, it scares him as well as me when he has these breathing issues. I did tell my doctor a year ago about an episode just like this….he just stares blankly and moves on. We did also share this with our new internist along with the long list of other symptoms, and she has sent us out to specialists, and so far each specialist has proven not to be willing to look beyond their already determined scope of practice. So we have given up on docs that don’t already know EDS or dysautomnia. I am waiting for the EDS conference and then hope to get a doctor referral for someone who already has experience in this area.
I like your idea of posting them a letter first, that way they can read it before they enter the room! : )
Terri LynnJuly 5, 2012 at 11:49 am in reply to: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. #2538
I appreciate your distinction between POTS and Dysautonomia. I think this is a very crucial step in getting better care. Heck, even getting the word out to docs about what EDS actually is and how it presents as well as all the “extras” that go with it would be super as well.
My son was diagnosed by a Duke cardiologist (he was so very mean until he realized Austin really did have POTS!), using only the poor mans method. Austin was long gone before they finished the test. The doc seemed satisfied, but could only offer salt pills, stockings…and such which helped very little. He has so much more than POTS!!!!! I can’t agree with you more the desperate need EDSers have for docs to have the information.
I had to look up Dysautonomia!
Symptoms listed on Wikipedia….
Excessive thirst (polydipsia)
Lightheadedness, dizziness or vertigo
Feelings of anxiety or panic (not mentally induced)
Rapid heart rate or slow heart rate
Orthostatic hypotension, sometimes resulting in syncope (fainting)
Other symptoms frequently associated with dysautonomia include: Gastroparesis (delayed gastric emptying), headaches, pallor, malaise, facial flushing, salt cravings, mydriasis (abnormal dilation of the pupils), constipation, diarrhea, nausea, acid reflux, visual disturbances, orthostatic hypotension, numbness, nerve pain, trouble breathing, chest pains, in some cases loss of consciousness and seizures. Dysautonomia can also present with orthostatic hypertension. A full list of symptoms may be found at the Dysautonomia Information Network.
Just starting here, I can say a big YES for Austin (and me too). I realize this is not likely the best list, but it was the first one I came across….and we have all of the issues.
Last night Austin came into our room about and hour after we all went to bed. He was having great difficulty breathing, he lay on our bed struggling to get each breath but doing a great job to remain as calm as possible so as not to aggravate the issue, he was very pale (he is very pale anyways…) and it was as if his rib cage or diaphragm were contracting…like spasms… I could feel his trunk go super hard on and off. Very weird! He looked like he was about to convulse at any moment with major twitches. I grabbed the heating pad and put it across his upper abdomen and lower ribs…and waited a few moments to see if this made it worse or better. He seemed to slowly, slowly relax until he was able to breathe again. Did the heat help? Or was it coming down already? I don’t know. But I tell you, I was one worried mother!
Thing is, I couldn’t even begin to explain this to our doc and hope for any real help!
So today I am in totally overwhelmed mode, mother hen worried sick I am not helping my son, and days and days and days go by while he suffers! I breaks my heart!
He is a brilliant young man, who lives in his bedroom, and tries so hard every day to do the best he can for himself.
If only we knew what doc to go to, or where to start!
We are attending the Cincinnati EDF conference and hope to learn more. We were going to Frankenmuth to hear you Dr. Diana, but as you know, it was canceled. Hopefully next year we can attend that one.
Thank you Dr. Diana, for all you do!
I too have issue with bending. Any time my head dips down. To me it is like suffocating? There can be an explosion of pressure around the top of my head. If I hurt my neck…which can happen just from one bending down, I may also be in pain (more pain) the rest of the day. I wish I knew what is was, but I am new here too and just learning.
I wish you the best in finding an answer.
I am new here today. I think my son would be very good for this. He is 19, has EDS III (Diagnosed by Dr. Francomano), and was diagnosed at Duke with POTS by a cardiologist. He is not on any of the drugs you mentioned. He is very sick, housebound for about 2 years now. I don’t know about MCAD yet…just heard of it.
I will send an e-mail.