January 21, 2016 at 3:48 pm #952
Hi there, I have POTS with awful daily pressure type headaches, I also have pulsatile tinnitus and pain behind my eyes especially when I move them. I am trialing diamox, it has been 3 weeks and it is making me feel terrible. I have had a few nose bleeds, I have developed flashing lights in peripheral vision (I am in the process of checking this out properly), I feel even more nauseous and tired, I have no appetite and I don’t feel like my headaches have improved, if anything they are worse. They are feeling a little like the low pressure headaches after a lumbar puncture, my headaches have always felt like an odd mix of higher and lower pressure but since taking Diamox being upright definitely makes the pain worse.
I see my GP soon, I’m not sure if I should be coming off the meds or try increasing my dose. I’m taking 250mg twice a day. I can’t tell if it’s working or if I never needed it in the place, could my headaches just be down to POTS? Very confused, and getting frustrated, I hoped I would try it and it would make me feel great!January 21, 2016 at 5:38 pm #5805
First thing!! What is your CO2 level? It needs to be 22 or above for Diamox to work well (and if you become more acidic on Diamox, you can feel very ill. 🙁 It’s important to have this monitored every two weeks or so (until you get the hang of it), then every couple of months to check to be sure your potassium levels haven’t changed. Fingers crossed for you!January 22, 2016 at 5:19 am #5808
Hi Diana. I am getting my bloods done in a few days so I will make sure to get them to check my levels. I have seen your videos about counteracting acidity and I am eating a high alkaline diet and using alkaline water drops, I will order some sodium bicarbonate tablets too.
I think what I’m concerned about is that I don’t need the Diamox, they did an LP and opening pressure was 19 but still I present with symptoms so I’m on a trial. Like I said before my symptoms don’t neatly fit with IIH and my pressure reading normal. My neurologist signed me off to the care of my GP who has never heard of Diamox before, so I am feeling very lost. The fact that you reply is incredible, it makes me feel less on my own with things and I know you can’t diagnose e.t.c but your opinion means a lot, so thank you for being so supportive on this forum.January 22, 2016 at 10:09 am #5810
One thought — our pressures can fluctuate. An opening pressure of 19 may not be diagnostic if your pressure fluctuates. What CAN be helpful, though, is to see if you felt less pressure after the puncture. 🙂January 22, 2016 at 10:22 am #5811
I had an awful low pressure headache for two weeks after, I’m pretty sure I didn’t heal well because that headache returned a month later. So it was difficult to tell but my pulsatile tinnitus vanished for about 5 days and my nose felt clearer like I could breathe. I have a constant blocked nose feeling the ENT said my passages had just narrowed, some days on Diamox I can feel I can breathe a little better.
I feel like it is the nature of chronic illnesses, second guessing everything. I just know when I saw your videos I cried because I felt like my symptoms were being explained and it was such a relief, getting the help is difficult. I know what I need to look into though, EDS seems possible as could mast cell issues. I need to remember the feeling I had of relief that I could possibly have found some answers and give the Diamox longer.February 7, 2016 at 6:35 pm #5841BarbaraParticipant
I know, I had that Eureka moment, when I first stumbled on Dr Diana’s video – ‘YES! someone who understands at last!’ It’s great not to have to struggle on alone, isn’t it?February 15, 2016 at 11:49 am #5860
It really is! I have been taking the Diamox for about 7 weeks now, the first three were terrible, the next three were great, but last week all my symptoms returned. My morning headaches were gone, the postural headaches stuck around, the pain behind my eyes lessened, my nasal airways opened, pulsatile tinnitus was at a minimum, it even reduced my crazy POTS heart rate and breathlessness. It was amazing, I even managed a real walk in the countryside. Last week that all reversed and I’m back literally feeling the exact same way I did before I took the Diamox. I don’t know what my body is doing. I wanted to stop the the medication but my GP hasn’t a clue what Diamox is and said she wants me to continue and she will write a letter to neurology who already signed me off, but she doesn’t expect they will reply. My GP and I are clueless. Are you from the UK Barbara?February 15, 2016 at 12:52 pm #5861
Mandy, Almost always, when pressure symptoms are relieved but then return, CO2 is shifting low. Do you know what yours is? Baking soda is a must, and the citrate form of magnesium, calcium and potassium can help, too. 🙂February 15, 2016 at 1:21 pm #5862
I am taking all of those, but have no idea what my levels are, I asked for my doctors to check my levels last time I had blood work, they told me they don’t do the test in primary care here in the UK, the metallic taste has been stronger the past few weeks, could that be a sign I am too acidic? Do you know of any home testing kits I could order online? I’m sorry, I’m being a bit of a pain!February 15, 2016 at 1:32 pm #5863
I wish pH strips would help (they don’t) or there was an in-home kit for CO2, but there isn’t. Sadly, that metallic taste isn’t diagnostic for acidity, either. It’s almost impossible to get too much baking soda, so if push comes to shove, increasing baking soda may be diagnostic (but a blood test would be the way to know with certainty). 🙁February 15, 2016 at 8:38 pm #5864BarbaraParticipant
Yes I’m from the UK and my GP orders a Potassium blood test and a Bicarbonate blood test (HCO3?) every couple of months because Diamox can reduce both of these. Also, can I add, when taking Bicarbonate of Soda you have to be careful that you don’t neutralise your stomach acid before eating (as this will lead to other problems) best time to take is when you’re not going to be eating, say at least an hour after eating.
Have you tried experimenting with your dose, for best results ? e.g. I find a half tablet of Diamox (=125mg), taken 3 times a day is sufficient in my case. As far as I know it’s a relatively short-lived drug once in your system, so you need to remember to take it regularly, to maintain it’s effectiveness.
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