NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Starting Diamox!!!
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Dr. Diana.
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July 10, 2012 at 9:02 pm #258
Prettytired
ParticipantI finally found a doctor to prescribe Diamox- yay!!! I’m planning to start it this weekend. I’ve been trying to read through the forum to make sure I understand all the ‘tips’ about it. I found the following, am I missing anything?:
*Take magnesium citrate & potassium with it to help in kidney stone prevention.
–Dosages??
*Drink tons of water!
*Alkalinity is very important; I’m ordering the chlorophyll drops, have cut out processed food, & ordered some empty capsules to fill with baking soda.
–Do I fill them with just regular ‘ole baking soda??
*I’ve read to take 500mg Vitamin C with each dose of Diamox to counteract the pins & needles.
*My doctor prescribed 150mg x2/day. I think I’m going to go with 75 mg x/2day for a few days first though. I know I’ll have to tinker around with it for a bit.*What did it help for you guys?… Headaches, neck/shoulder pain? What else? I’m hoping it’ll help my blurry vision, tinnitus, head rushes, general dizzines, and fatigue.
*What about side effects? I’m ready for the pins/needles, strange taste, decreased appetite, and increased urination. Anything else?Prettytired
July 12, 2012 at 8:40 am #2577Prettytired
ParticipantSo 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).
July 16, 2012 at 4:31 pm #2625Barbara
Participant. . . . . Go barbie! Go Barbie! . . . . . . Yeaahhh!
Finally got the go-ahead for Diamox!!!!!! Managed to get a ‘short notice’ appointment with a Neuro-opthalmologist today. There was only something slightly untoward in my eye, I remember he said slight inflammation but I can’t remember whether he said optic nerve or sheath, anyway, it meant he was happy for me to try the Diamox, yippee!! I never thought I’d be excited about obtaining drugs. He did say to watch my potassium, to have a banana a day.
He first suggested the ‘slow release’ version but something in my head said that that’s not as good – have I imagined this ?! Is it a capsule or a tablet (and how big is it because I do have swallowing issues?)
What’s the best way to start taking it? and get the best from it ? any advice greatly appreciated.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.July 16, 2012 at 4:49 pm #2626Prettytired
ParticipantYay!! 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!!
November 5, 2012 at 1:53 pm #3101Dr. Diana
KeymasterThis thread is over 90 days old and will be closed. Please feel free to reopen the discussion by clicking on “New Topic” in the upper right hand corner of this page. Thanks!
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