Forum Replies Created
-
AuthorPosts
-
August 2, 2013 at 5:05 pm in reply to: pulse pressure of 7 preceded by varying bp results and usual bizarre symptoms today. #4032charlie1Participant
I forgot to mention 2 things- ATIVAN -I should also have said that the drunk symptoms came on fairly rapidly. I let 15 min go by before lying down. When that caused the head pressure to increase, I took a .5 ativan b/c I know it can be a mast cell stabilizer and its helped me with this before.(I use .5 ativan at night for sleep disorder). Within 20 min. I felt much better and by an hour later I was pretty much back to normal other than the crazy blood pressures were happening. So, is this likely MCAS and if so, what did I do to trigger the granulation?
SUGAR READINGS are also fluctuating – I often have hypoglycemia in the mornings (3.2-3.8) and my usual after meal level is still low (mid 5’s). But today my hubby wondered if my episode was actually a hypoglycemic reaction and took my glucose reading and it was higher than we would have expected (6.3).
I haven’t eaten much today for fear the mental/neurological symptoms will occur again which they now are but probably due to NOT EATING. Now my glucose is 8.3! What???Just wanted to give you all info in case its relevant. If you have any thoughts as to what’s happening, please let me know. BIG THANKS.
charlie1Participantwhat a great idea! Looks great!
charlie1ParticipantWow, that’s so good! People that can do such good artwork amaze me. I can’t even draw a half decent stick man.
charlie1ParticipantAh.. to be so talented! Very nice!
charlie1ParticipantOkay, I’m eagerly awaiting the series! Thank-you!!
charlie1ParticipantHi Dr. Diana. That is totally nuts! You were scheduled to speak yet they tell patients not to see optometrists? Huh?? Am I missing something?
Various organizations having the same goal with respect to educating those in need. That’s what we all assume is happening but never think much of what might be going on behind the scenes. I can understand why you would still be hurt.
We will not be going to the annual conference. I am too nervous that my health will nose dive after the flight and I’d be stuck in the hotel instead of learning more about EDS and the possibility of me having it. I’ll continue to educated myself through terrific sites such as yours! Thanks for all you do.charlie1ParticipantI have red dots covering my thighs and some on lower legs. Has anyone looked at pics of ‘telangiectasia macularis eruptiva perstans”? It’s a type of mastocytosis but not sure if that’s what any of us have.
charlie1ParticipantRegarding the relationship between joint hypermobility and IIC – I have always been hypermobile, especially the arm joints, hip and jaw. (hubby says if I quit talking, at least that joint would be remedied. Hmm). For whatever reason, the hypermobility seems to have gotten worse since POTS.
charlie1ParticipantHi Dr. Diana, I had an MRI done over a year ago locally and also one done 8 months ago at a teaching hospital when ruling out epilepsy. I will have to find out how to acquire the actual images. If I do indeed get a hold of these, how do I send them to you? I do though have the radiologist report of the 1st MRI stating that I have a ‘deviated pituitary stalk’ but otherwise unremarkable presentation.
Also, there are fundus images from May that I can try and get and send as well if you like. Apparently my optic pressures were 21 and 22 but because my cornea is ‘very thick’, I have not been flagged for potential glaucoma. Also papillodema was not found.
HYDROCEPHALS SYMPTOMS- I have all of those you mention although not always within the same day. I’ve always been headache/migraine prone but especially since a car accident 9 yrs ago leaving me still dealing with chronic neck issues from the whiplash and now headaches that are almost always in the occipital area (right especially). Lying flat is not good for me…feel sick and or get headache. My physio therapist believes my headaches are due to the tight upper muscles coming into play when I CONSTANTLY dislocate/subux my elbows which then causes my wrists and shoulders to also come out of joint. Every single day this has happened since I became more mobile when my POTS improved February 2013.
Sorry for the long post-trying to give you relevant information to help you assess my situation.
Depending on testing costs, my husband will accompany me to Texas if follow up is warranted in order to help me find headache relief and joint stability.(considering prolotherapy as the daily ‘pop outs’ are getting ridiculous)Thanks a ton! Charlie
charlie1ParticipantOkay, thanks for letting us know.
charlie1ParticipantHi. So sorry to be a bug about wanting/needing conference details but my husband needs to know when to book his holidays. I know it appears I’m being impatient but I need to push for information so that arrangements can be made for us to getaway for those few days!
I’ve been looking forward to this for many months now but with July creeping closer, I’m beginning to wonder if maybe CEDSA is finding they need to postpone again. Heard anything more on this Dr. Diana?
CharlieJune 2, 2013 at 9:23 am in reply to: Video is up about the "invisible" suffering endured by hyperadrenergic POTS patients! I hope it helps explain the suffering to those around you. #3709charlie1ParticipantI will reduce the zantac as I don’t have many IBS symptoms since changing my diet years ago. For me, the recent addition of zantac (75mg am/pm) helped with neurological symptoms by reducing my leg ‘heaviness’ and brain fog which is why I wonder if its more MCAS related than to my POTS. It will be a good experiment to see if those symptoms increase again when not taking the zantac.
I Googled ‘salt and endothelium’ and there certainly is lots of published data out there! It seems that salt loading can cause over-expression on blood pressure and vascular function. I never worried about a rise in BP b/c I’m hypotensive but hadn’t thought about the vascular system itself. Thankfully I already reduced my salt intake months ago when my stomach disagreed with the salt pills.
Thanks again for ALL YOUR WORK!!June 1, 2013 at 2:40 pm in reply to: Video is up about the "invisible" suffering endured by hyperadrenergic POTS patients! I hope it helps explain the suffering to those around you. #3706charlie1ParticipantThank-you for the video!! So educational!
I have a question though about the zantac that you mentioned on this video and others before it. I read in Wiki that using zantac can increase your chances of developing food allergy b/c the food proteins don’t get digested and enter the bloodstream… or something like that. That would not be good for people like us are taking zantac for allergy reasons!! Can someone explain.??
I was diagnosed with POTS thru TT testing in Jan. 2013 but am unsure if its the hyperadrenergic type bc catecholamine levels were not taken. Since being on mestinon and florinef I’m much better and the ‘acute stage’ I experienced last spring/summer is thankfully over. A few months after being on meds for POTS, sadly, my symptoms started to appear again, periodically at first, then daily. It was then that I started researching MCAS more in depth and am happy to note that since starting the zantac and antihistamine protocol mentioned by Dr. Diana, I have less dysautonomia symptoms although some mornings after 1 hour of being up and around, if I’ve ate or not, the symptoms come back for awhile. I will get huge brain fog and my legs feel like lead. I started taking .5mg of ativan when that happens (originally prescribed to help with sleeping disorder)and within 20-30 min. the symptoms go away! I couldn’t understand why but have since read that benzo’s are mast cell stabilizers!! I also started NASALCROM and after 25 yrs of chronic nasal stuffiness, I can breathe normal most of the time!! That is amazing! Also, my optometrist said she wouldn’t be surprised if I have Sjorgrens b/c of the incredible dry eyes I have (my doc says I don’t have it b/c yrs ago I was tested for autoimmune markers when I started getting joint pain). The optomistrist started me on OPTICROM last week and if that doesn’t help the red dry eyes, I have a script for PATADAY. I keep researching MCAS and wouldn’t be surprised if I have it. I also likely have Ehlers-Danlos. So thank-you Dr. Diana for your videos and hand-outs!! It is wonderful to have my symptoms validated 🙂
charlie1ParticipantThat would be great! A bonus for me would be if the conference offered time slots for individuals wanting to book with a speaker/specialist for a private consult. Even if a firm diagnosis is not possible, I am hoping someone of expertise could give their opinion on whether or not I have EDS. I have symptoms of hydrocephalus and MCAS and was diagnosed with POTS 1 yr. ago.
Looking forward to the video. Thank-you Dr. Diana! 🙂charlie1ParticipantI’ve been trying to get details on the CEDSA organization’s July conference in Michigan. I have left emails, posted on the site and even called the office leaving a message but I have heard nothing back! The website says its being worked on but calling a few board members listed phone numbers has not been successful either.
Is it possible this organization is no longer operating? -
AuthorPosts