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Hi all,
At the end of last week my wife Laura finally started a trial of Diamox. Unfortunately she wasn’t doing well on it. She was already in a really bad spot with her symptoms, so we’re not really sure that it has anything to do with the Diamox.
Previously she had been unable to sleep on her back due to the syncope/near-syncope issues she was having. Most recently, she’s been unable to sleep on her sides or in a raised position for the same reasons, which means she’s getting almost no sleep at all. And I know some of you understand from experience that when I say almost no sleep at all, I mean just that – zero! She’s also been experiencing increased blood wooshing sensations in her head and pain/pressure at the base of her head.
Anyway its been making life pretty unbearable so we had been counting on Diamox helping in some of these problems, but it just didn’t seem to help and she started to have some difficulty breathing, which is also kinda a new symptom. She was only taking the diamox for a few days, at which point she decided to stop.
We are still hoping diamox may be an option for her, but we wanted to ask if anyone has any experience taking other meds while on diamox. She is taking Propranolol and Florinef right now as well. I know some have commented that it may be counterproductive to take both of these meds and Diamox at the same time, but we are now wondering if it is a bad idea entirely. I know from the pharmacist that there is a slight/moderate contraindication with Propranolol/Inderal LA and Diamox in that it can exacerbate or precipitate acidosis, but we were not warned of anything severe. Also, she’s been on Propranolol and Florinef for a while so we were hesitant just to stop or taper either of these too quickly, but we really wanted to try the Diamox asap.
Does anyone have any thoughts they can share in taking all three of these meds simultaneously?
Thanks for any info you can share!Also a huge Thank you Dr. Diana for sharing all of your research and information with the EDS community! Laura and I ordered the Global CCSVI DVD last night and we can’t wait to watch it in full. I read Michael Flanagan’s “The Downside of Upright Posture” in the fall, and we’ve also both just finished with Part 2 of your theory recently and found many of the insights to be truly remarkable. You’ve given both my wife and I a lot of hope knowing that someone is out there thinking about causes/solutions in a creative and thoughtful manner, and we’re really grateful for that.
I forgot to mention she was taking 62.5 mg of Diamox 3 times per day. Also, she started taking baking soda capsules about halfway in, but was not taking very much at all.
I am no expert, (brand new Diamox user myself) but from what I have heard/ learned… the florinef is counterproductive to the Diamox. The florinef may be increasing fluid pressure, which you are trying to reduce with the Diamox. Not sure about the propranolol, as I have no experience with it. I decided against florinef for that reason, I did not want to increase pressure. I had a hard time adjusting to Diamox for the first few days (had wacky side effects), but now I do not have side effects, besides numbness/ tingling in my extremities at times and perhaps an increase in light sensitivity. But for me there is reduction in the back of the head ache and upper neck pain, and increased appetite, and it works as an anti-nausea for me, and helps with my mood swings/ irritability. I take 1 1/2 to 2 sodium bicarbonate pills (650mg each from the pharmacist with out an RX) with each dose and I will take an additional 1-2 sodium bicarb pills through out the day. I had to fiddle with the dosage and now my head tells me when I am due. I try to take it at really regular intervals (I take 4 times a day). I had to tinker around with the dosage until I found what was working best. Again, I am no expert. Others here have said that you should have blood levels watched while adjusting to Diamox.
@Tonkadu, I woke up today thinking about your wife. I hope she finds the improvement she needs. Please go to the top of this page and look at the videos section, Then watch the video with the title “External Communicating Hydrocephalus”… it is the like the second or third video down. It may help you figure some things out.
(And ignore the spam posted on this thread. Sigh.)
And regarding the fainting or near fainting when laying down, did you already read the thread- “Do you feel sick when you lie flat on your back, or have you ever felt “paralyzed”?” on this forum?
A soft neck collar brace may be helpful? (I didn’t like it myself, but most people here do.) Instead, I roll a towel and use that at the very top of my cervical spine. I never was able to lay on my sides before, and just couldn’t figure out why- it’s like my shoulders, neck, everything collapses… But now I will not lay down without a rolled towel to support my upper neck. That suggestion (found somewhere here on pretty ill) changed my ability to lay down. I had to figure out exactly where to place the towel for support, but it helps on my side, my back when elevated to watch TV. etc.
Hi all,
At the end of last week my wife Laura finally started a trial of Diamox. Unfortunately she wasn’t doing well on it. She was already in a really bad spot with her symptoms, so we’re not really sure that it has anything to do with the Diamox.
Previously she had been unable to sleep on her back due to the syncope/near-syncope issues she was having. Most recently, she’s been unable to sleep on her sides or in a raised position for the same reasons, which means she’s getting almost no sleep at all. And I know some of you understand from experience that when I say almost no sleep at all, I mean just that – zero! She’s also been experiencing increased blood wooshing sensations in her head and pain/pressure at the base of her head.
Does anyone have any thoughts they can share in taking all three of these meds simultaneously?
Thanks for any info you can share!Also a huge Thank you Dr. Diana for sharing all of your research and information with the EDS community! …we’ve also both just finished with Part 2 of your theory recently and found many of the insights to be truly remarkable. You’ve given both my wife and I a lot of hope knowing that someone is out there thinking about causes/solutions in a creative and thoughtful manner, and we’re really grateful for that.
Hello, my friend. Of course I can’t treat or diagnose your wife over the internet (see disclaimers), but I do have a few thoughts on this. The pain you describe does sound like mild hydrocephalus, so I wouldn’t give up, yet! I think you hit the nail on the head with your thought of drug interactions. Florinef made my intracranial pressure, and resulting symptoms MUCH worse (which was how I cinched the suspicions of mild hydrocephalus. Propranolol will contribute to acidosis, but I think that wouldn’t be a huge issue so quickly (but you don’t want it to become an issue, either, so caution is in order there. Since you have Part 2, you may have seen the section on neurogenic shock, where our BP and heart rate can drop simultaneously while we are on our backs (due to compression of the vagus nerve). If propranolol is in her system, she may be less able to avoid shock. Propranolol is a short-acting drug, so with your doctor’s OK, you may want to try discontinuing that drug, at least for night time. Then she may be able to go UP on her evening dose of Diamox. The evening dose is the most important, since we drain CSF and blood from our brains more poorly at night time. If you have a machine to check her BP and heart rate, it would be a good idea to be sure it is not dropping too low at night time. The Florinef may be adding more CSF and blood into her head, but when she is supine, she is less able to drain any fluid, resulting in more compression on her vagus nerve. Any attempt by her body to raise her heart rate to compensate may be impossible on propranolol (and her evening dose of Diamox is likely too low to compensate for the increased fluid from the Florinef. Hence, her symptoms get worse, or not better. Does that make sense? I would recommend that she work with her doctor on discontinuing Florinef for a while, and stopping any propranolol that could carry over until bed time. Then consider a night or two on a higher dose of Diamox (maybe 125mg or even 250mg) to see if that doesn’t stop that headache overnight. What is hard for some physicians to grasp is that we are trying to address the CAUSE of the dysautonomia, not just minimize the symptoms. And if that regimen is working for her symptoms, then work closely at monitoring her CO2 levels (she’ll need to stay above 22) and her potassium levels. Is she also taking a good amount of magnesium citrate? That’s important, too. It sounds complicated — and it can take some fiddling to get the best dose for her, but once she’s got it, she’s got it! Will you keep us posted? 🙂 Diana
@Tonkadu, I woke up today thinking about your wife. I hope she finds the improvement she needs. Please go to the top of this page and look at the videos section, Then watch the video with the title “External Communicating Hydrocephalus”… it is the like the second or third video down. It may help you figure some things out.
(And ignore the spam posted on this thread. Sigh.)
Hi MattiesMom, you are no longer a newbie! Great thoughts!
Spam? You have something against low cost purses? HAA! Sorry, guys, sometimes those STILL sneak through! Ugh… 😛And regarding the fainting or near fainting when laying down, did you already read the thread- “Do you feel sick when you lie flat on your back, or have you ever felt “paralyzed”?” on this forum?
A soft neck collar brace may be helpful? (I didn’t like it myself, but most people here do.) Instead, I roll a towel and use that at the very top of my cervical spine. I never was able to lay on my sides before, and just couldn’t figure out why- it’s like my shoulders, neck, everything collapses… But now I will not lay down without a rolled towel to support my upper neck. That suggestion (found somewhere here on pretty ill) changed my ability to lay down. I had to figure out exactly where to place the towel for support, but it helps on my side, my back when elevated to watch TV. etc.
Thanks for your thoughts and info about your sodium bicarb @MattiesMom. My wife definitely has used the towel trick and soft collar before. They used to be super helpful, and they’re still part of my her routine, but sadly they’re just not enough anymore. 🙁 I do believe we’ve read that thread, but I’ll go back and make sure – thanks for pointing that out.
Hello, my friend. Of course I can’t treat or diagnose your wife over the internet (see disclaimers), but I do have a few thoughts on this. The pain you describe does sound like mild hydrocephalus, so I wouldn’t give up, yet! I think you hit the nail on the head with your thought of drug interactions. Florinef made my intracranial pressure, and resulting symptoms MUCH worse (which was how I cinched the suspicions of mild hydrocephalus. Propranolol will contribute to acidosis, but I think that wouldn’t be a huge issue so quickly (but you don’t want it to become an issue, either, so caution is in order there. Since you have Part 2, you may have seen the section on neurogenic shock, where our BP and heart rate can drop simultaneously while we are on our backs (due to compression of the vagus nerve). If propranolol is in her system, she may be less able to avoid shock. Propranolol is a short-acting drug, so with your doctor’s OK, you may want to try discontinuing that drug, at least for night time. Then she may be able to go UP on her evening dose of Diamox. The evening dose is the most important, since we drain CSF and blood from our brains more poorly at night time. If you have a machine to check her BP and heart rate, it would be a good idea to be sure it is not dropping too low at night time. The Florinef may be adding more CSF and blood into her head, but when she is supine, she is less able to drain any fluid, resulting in more compression on her vagus nerve. Any attempt by her body to raise her heart rate to compensate may be impossible on propranolol (and her evening dose of Diamox is likely too low to compensate for the increased fluid from the Florinef. Hence, her symptoms get worse, or not better. Does that make sense? I would recommend that she work with her doctor on discontinuing Florinef for a while, and stopping any propranolol that could carry over until bed time. Then consider a night or two on a higher dose of Diamox (maybe 125mg or even 250mg) to see if that doesn’t stop that headache overnight. What is hard for some physicians to grasp is that we are trying to address the CAUSE of the dysautonomia, not just minimize the symptoms. And if that regimen is working for her symptoms, then work closely at monitoring her CO2 levels (she’ll need to stay above 22) and her potassium levels. Is she also taking a good amount of magnesium citrate? That’s important, too. It sounds complicated — and it can take some fiddling to get the best dose for her, but once she’s got it, she’s got it! Will you keep us posted? 🙂 Diana
Thanks so much Dr. Diana! That was a very helpful explanation about the way these drugs might be interacting.
Hi! I just FINALLY was able to get some Diamox (thanks for the suggestions!)but was super bummed when I woke up and my face and arms and hands were totally numb and tingling. My headache was better but I kind of felt drunk. Then I read the prior post and saw that a “higher dose” would be 125mg or even 250mg. I looked at my bottle and I was precribed 500mg! It’s not a solid pill, so I can’t cut it in half. It’s a capsule. Any ideas on how to lower the strength? Also, what is the normal dose? Thanks!
-Katshnoogals, i believe others on the forum have posted that the numbness/tingling subsides after a while. my wife is also on diamox and is experiencing some tingling. she was initially prescribed the 500 mg capsules as well. her’s were the extended release version (i’m guessing that’s what you have too). we immediately called the prescribing doc and asked that they call in the other form of the med – which they did. i believe Dr. Diana suggested that the regular release tablets work better for her (and others too). that’s what my wife is taking now, and as you’ve heard, you can adjust the dosage with those easily by breaking the tablet. not sure what a normal dose is, but my wife worked her way from 62.5 mg 3x day to 125 mg 3x day. She’s sticking with that for now.
Has anyone ever experienced vertigo, nausea, and loss of hearing/ringing in ear while taking diamox? My wife woke up yesterday with severe vertigo/nausea and spent most of the day sick to her stomach and hasn’t left the bedroom still. This morning she woke up with loss of hearing and ringing. We’re working with her doctor to address this of course, just wondering if anyone else has had this and has had any luck treating it?
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