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January 11, 2013 at 2:57 pm in reply to: Dysautonomia and our Vascular Irregularities — the video is OUT! Any questions? #3316PrettytiredParticipant
I assume the systemic treatment is something you’re still working on & is NOT released yet?
My neurologist is sending me for a CT Angiogram of the head/neck next Wednesday. I expect it to be abnormal, but want to address it properly without angioplasty!
December 26, 2012 at 9:38 pm in reply to: Fingernail moons! Did you lose yours? Mine are BACK!! Vid is out! #3259PrettytiredParticipantI’m down to just ONE moon on my right pointer :(. Looking forward to trials!
PrettytiredParticipantI went through a phase that lasted a few months. Randomly, I would feel sick after eating. Most often, it was overwhelming fatigue… a few times I laid on the floor of my cubicle for 20 minutes to get through it. Then it would pass and I could go about my day.
This hasn’t happened in quite some time, so I’m not sure why it was happening. I kept thinking it had something to do with the vagus nerve reacting to the contents in my stomach and sending an inaccurate message to the rest of the body to shut down.
PrettytiredParticipantWhat is the name of this video? I’m having trouble finding it!
I see my neuro in a month and want to address CCSVI with him (just for a diagnosis; patiently waiting on your research!). He’s (finally) on board with letting me direct our research (since his words twice now have been ‘I don’t know where else to look; you should see a neuro in a teaching hospital’). He’s given me Diamox and just ordered some labs to check in MCAD, and has already given me a script for Gastrocrom.
What should I ask for? fMRI, doppler?
Thanks!
August 5, 2012 at 9:42 pm in reply to: Dry Eyes, Dry Nose and reduced sense of smell, Dry Mouth and excessive thirst. #2724PrettytiredParticipantI get cotton mouth from time to time. I assumed it was a POTS symptom and it comes on quickly & quite intensely (I probably look like a maniac making such an immediate fuss about getting a drink haha). If it proceeds far enough, I faint so it’s a big indicator for me. And yes, I’ve noticed my urine smell has changed. There was also a lot ‘settling’ after urination. I kept getting testing and nothing was ‘abnormal’.
I get dry eyes as well (only sometimes… and much better after starting Diamox), but I sleep with my eyes open and thought it was from that.
I have a very sensitive nose- smells don’t overwhelm me but I often smell things well before others do. And there have been a few times I’ve smelled things that I’m pretty sure aren’t there (IE: the other day my right hand smelled like I’d been peeling onions, except I hadn’t in weeks).
PrettytiredParticipantYay!! I think Dr. Diana said she had better results from the regular release kind, but I don’t remember where I read that. The 125 mg tablet is about the size of my pinky nail and very thin- very easy to swallow.
I got it from my primary doctor, so he kind of just blindly gave it to me. While I’m glad I have it to try, I’m not sure he really knows the best dosing, monitoring, etc. He suggested 125 mg/x2 day. I’m doing 62.5 mg at 9 am, 62.5 mg at 3 pm, and 125 mg at 9 pm. I have noticed a minor improvement in energy levels… just have to ignore the rest of side effects :)!!
The first couple days I was peeing like crazy, but was having an increase in head and neck pain. I had mild tingling in my hands, feet, & face. I could also FEEL the pressure changing in my head. In the last few days, the peeing & tingling slowed down and so did the headaches/neck pain. I then went through a bout of dizziness. I haven’t started the sodium bicarbonate yet, but really need to. I’m wondering if I’m getting too acidic already and whether or not the Diamox is still working.
Best of luck to you!!
PrettytiredParticipantSweetFeather- I’m so happy to hear that it helps you so much!! I asked my doctor for Gastrocrom but he suggested we try this first. I don’t get sinus infections, colds, etc. I don’t have sensitivity to strong smells either. The only thing I’ve noticed so far is: When I was younger, I got sinus infections/pressure all the time. I could press on my sinuses over my eyes/nose and it would release the pressure. Over the last week, I’ve had a ton on tingling in my sinuses & pressure, but no congestion or anything. It’s not doing it this time so that makes me think it’s something different. The Nasalcrom has stopped the tingling & pressure.
However, I started Nasalcrom last night and woke up this morning with dizziness/vertigo. It’s a much different dizziness than I’m used to dealing with. It’s almost like my eyes aren’t keeping up with my head movements. Anyone else experience this after starting Nasalcrom? I also started Diamox Wednesday so I wondered if maybe it’s that?
PrettytiredParticipantYay! What’s been your experience with the self treatments?
PrettytiredParticipantSo I got excited and tried the Diamox last night. I took it before bed around 9:30. I was up 3 times in the first 2 hours to pee but then it calmed down. However, when i got up this morning, I had a ton of pressure in my face/nose/facial sinus area and then a headache began to set in. I got back in bed and the pressure/headache stopped. I waited another 30 minutes, drank some water, & got back up & now the headache is ‘ok’. It almost feels like my brain is tingling haha…. Should I keep going with the Diamox, does this sound common to you guys? Or does this seem like a low pressure headache? It’s NOWHERE near the headache I had after a spinal tap a few years back. Also, my neck feels tight on the outsides (which is something I experience off & on).
PrettytiredParticipantI don’t have any answers for you, but I see a geneticist in August. What should I ask for particularly? He knows I’m coming to discuss EDS, am I wrong to assume he’ll know what to do? Haha… silly question, I should assume he knows nothing!!
July 3, 2012 at 2:55 pm in reply to: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. #2526PrettytiredParticipantI would definitely say I have dysautonomia, not just POTS. I have been diagnosed with POTS by the Tilt Table Test, but do not check my rate at home so can’t say that it does or doesn’t happen every time I stand up. My question is: What type of specialist is best to manage dysautonomia?
PrettytiredParticipantDr. Diana (or anyone), I have a couple MRIs on CD that I can send for your ‘collection’. How do I email them?
PrettytiredParticipantSorry to hear you’re having an attack. I actually get this quite often, never considered a virus or food poisoning. I’ve always assumed I’ve angered my Vagus Nerve and it’s flaring up. I would think the opposite: if a healthy person came down with that, I would see more reason to seek care. Try & ride it out but watch the heart rate. I wouldn’t let that go much higher or for much longer with popping in to a Prompt Care-type place to bring it down. I am LOVING Zantac right now. I get a lot of reactions after I eat (such as now, palpitations & major bloating & fatigue) and Zantac stops it quickly.
Two times I’ve ended up in the ER for what I believe were gallbladder attacks with the worst chest/pain/right side pain I’ve ever experienced. Both times they told me I had the flu and that it triggered my Vagus Nerve (they gave me a GI cocktail of Lidocaine & Milk of Mag I think— this calmed the nerve and stopped the attack). They were half right… I triggered my Vagus Nerve but I don’t believe it was the flu (I, shockingly, do not get flu/colds…. so strange- anyone else like this?).
Keep us posted & feel better (ha…. right!).
PrettytiredParticipantThat’s ME!! Some days it doesn’t bother me at all, other times I go through spells and will wake up in the morning with a full belly of last night’s dinner. That fermentation is not good!! I’m emailing you now Dr. Diana :).
PrettytiredParticipantBarbara, it’s funny you mention quercetin because I was just reading about it today for the first time! Good to know that about the cabbage! I assume it can be bought OTC?
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