August 28, 2011 at 9:45 am #59
Im going to do this in segments/different posts since its kicking it out if its too long or for some other reason. My name is Tracey Richardson, Im a 42 yr old F, I have EDS3, Dsyautonomia, POTS, Reynauds. I started having issues that were really bad around the age of 34-35. It took me 7 years to figure it all out. I think I still am to some extent. It seems to be manifesting with dif symptoms which is hard to keep up with sometimes. See next post!August 28, 2011 at 9:50 am #1417
Lately, I seem to have this “brain-firing” going on– some may describe it has an aura before a migrane–but I dont have the migrane–such as:
Hyperacusus – sound sensitivity
Light Sensitivity- esp flourescents and bright sun
Sensory overload – too many things happening at once- sends me into an aggitation especially with sounds.
I feel a pressure in my head at times when this happens.
I feel the vibration of my own voice in my skull bone–I think its because my ears are sensitivty plus I could have inflammed vocal cords due to allergies–always a raspy voice in the morning. I have mild asthma.
These symptoms have kept me from work lately, but IM going to try to push through them until I can try the Diamox. — see next post.August 28, 2011 at 10:00 am #1418
Im a lean manufacturing consultant, my background is with Toyota, so I teach their methodologies to other companies. So it requires travel, teaching (standing for 9 hrs instructing/talking)–that is tough in itself. Ive found a way to muddle through because I enjoy what I do and I have great clients who mostly understand and work with me. So I have many idiosyncrasies to “get through”. My travel bag is 60 lbs..LOL
I must sleep as much as possible, I must have downtime after the sessions so I usually duck the dinners,pack my own food, I must keep the anxiety at a low roar–which is hard. Next post>>>August 28, 2011 at 10:06 am #1419
Up til June I was able to manage everything until the added symptoms above,plus the added dizzy I having with sounds and light,somedays harder than others. I take, Propanolol for tachy, Midodrine for all the standing bp fluc, Domperidone for digestion, Alprozolam for the pseudo anxiety and real anxiety and to sleep. Sometimes I have Ritalin for the bad fatigue days, but really dont use it much, esp since Im on low doses of Alprozolam. they sort of contradict each other.:)next post. I think this segment thing is working so far.August 28, 2011 at 10:09 am #1420
I have many many of the other POTS symptoms – 80% of potsplace.com. IM very interested in Dr Diana’s theory. As you all known Dr’s are frustrating and getting someone to understand is priceless. MY reg GP knows IM a rare bird so sometimes he just gives me stuff bc he knows I know more than he does about it. Im requesting a low dose of Diamox on Tues (30th). We will see if he will do it, I sent him the theory on Fri to read. Gonna try to take my hubby with me so he thinks IM more serious. :). next post!August 28, 2011 at 10:21 am #1421
I will try to finish this, but its kicking just about everything out to spam 🙁August 28, 2011 at 10:24 am #1422
After my allergy tests tomorrow I will be looking into the H1H2 inhibitors. I already have a wheat intolerance and IM allergic to trees, in KY that is a nightmare within its self :). I hope to see some results from that. IN the meantime, Im trying to get into see Dr FRancomano in Baltimore to get her opinion. next post!August 28, 2011 at 10:28 am #1423
If any of you have any questions please let me know. I hope to continue to learn from Dr Diana, and all of you, and if I get diamox I will let ya know. Fingers crossed! IM blessed to have found DR. Diana, this site and its wonderful people…just to know we arent alone, although some days I would like to scream really loud :)… grin.!!October 24, 2011 at 3:26 pm #1545Dr. DianaKeymaster
If any of you have any questions please let me know. I hope to continue to learn from Dr Diana, and all of you, and if I get diamox I will let ya know. Fingers crossed! IM blessed to have found DR. Diana, this site and its wonderful people…just to know we arent alone, although some days I would like to scream really loud :)… grin.!!
Hi Tracey, I didn’t want everyone to think I’ve been ignoring you! My friends, I’ve been in touch with Tracey via email… How are you feeling/doing these days, Tracey? And are you able to post longer messages now? Please say yes, or I’m jumping out of the window (I’m on the first floor, don’t worry). 🙂 DianaOctober 24, 2011 at 4:02 pm #1553
WEll lots happening… here is a recap for everyone….Im digging into everything as much as I can so I know what Im dealing with….Im trying to keep working in the meantime which is a challenge teaching and traveling so much but IM trying very hard to do what I can since one day I may not be able to.
So.. I just completed my blood tests and 24 hr urine test for Dr Castells office to look into my potential MCAD situation. Not sure the tests will prove anything, but its a start and we will go from there.
I think I will be going to Dr Sclafani in NY to do an ultrasound and consult for the possibility of CCSVI. I may not have the angioplasty since it may not work for me due to the EDS, BUT it will be nice to know that the Diamox can be a treatment for me if I do have vein issues with the CSF fluid draining properly.
My Neurologist has given me Diamox to try. Ive been traveling wtih work and with DR appts so I havent had a chance to take it just yet. I hope to try soon. I have a low tolerance to meds so I need to be at home when I try this. Im hopeful the side effects arent hard on me and it helps if in fact that is creating some of my issues.
Im hoping to see Dr Francomano… Im just awaiting her to view my 27 page application to learn anything I can on the genetic side…. in the meantime I do have an appt with Dr Tinkle on Nov 28th. He may not be able to help me, but other opinion cant hurt.
Im going this Fri (Oct 28th) to see a specialist in TMJ in Dayton OH… I think my TMJ is creating some ear issues for me as well as pain and ringing etc….
Im taking my H1 and H2’s.. also doing Zaditor eye drops and Pataday, doing Nasalcrom nose spray…
I think my biggest trigger is STRESS…and with POTS… Wow… I also take Xanax for that it helps esp with my travel schedule.
So folks thats where IM at… Im determined to do what I can, learn what I can, and catch up with research!! I know we have something that isnt going away… but Im not going down without a fight and giving myself a chance for the best quality of life possibly.
A very special THANKS to DR Diana for everything she knows, does, shares and researches for us… she is a God send!! Im thankful to know her through this forum!! Wow isnt she making a difference!! Thanks just isnt enough for what it means.. I will keep everyone posted as I learn more!! and also when IM able to take the Diamox…..Im really anxious to see Dr Sclafani in NY to try and confirm the head pressure thing if possible. Just to know!! TraceyNovember 14, 2011 at 9:01 pm #1581Dr. DianaKeymaster
Hi Tracey, you are too kind. Thank you for the virtual “hug”. Right back atcha’!
Just a couple of comments — when you start Diamox, please take your first dose right before bed time — it will give you the biggest effect then, since we don’t drain CSF very well while lying down.
Cromolyn sodium is so important (just ask a formulating pharmacy to make it for you — your can save about $1,000 a month!). And stick with it! It takes 4-6 weeks of consistent dosing to get the effect.
Xanax also calms mast cells! I never miss a dose.
No NSAIDS, OK? They cause mast cell degranulation. Yikes.
I’m so excited you are still working! Rock on, my friend and please let us know how your appointments go, OK? Big hug, Diana
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