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 How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?

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Cdottie
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PostSubject: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Fri Jul 27, 2012 4:54 am

Hi everyone,

I would be so interested and appreciative if you could weigh in and mention whether your experience of the side effects of Diamox: tingling, nausea, vomiting, fatigue, sun sensitivity went away!
If they went away how long did it take? 2 months, 6mnths, 1 year?

Or if they never went away, did you manage to tolerate it or did you wind up having a shunt because of how unbearable the medication was?

This is the place I'm at now, and so I would love all your insight and personal experience even the people who may have done the surgery due to these major medication side effects...

Thanks so much thank you



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Sophiasmom
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PostSubject: Re: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Fri Jul 27, 2012 6:24 am

Cdottie;
please get a sleep study before you go for a shunt. see how much mileage you can get out of treating sleep apnea first. you can learn more about it at www.doctorstevenpark.com
I am just on 62.5mg bid of Diamox and will try to increase soon. I don't have any side effects at that dose, and it changed my headache pattern for the better, but I am also treating my sleep apnea. being thin does not rule this out. not snoring does not rule it out. it causes hypertension.
Deb
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Cdottie
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PostSubject: Re: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Fri Jul 27, 2012 6:31 am

Deb,

Thanks o much for your concern and advice. Really sweet of you! I actually did already do a sleep study and it was read as normal with some mild bruxism. No breathing abnormalities at all. So unfortunatly I don't think I fit that theory.
though it is wise of you to recommend it as I think many probably skip doing it without ever knowing it might yield crucial info to help treat IH from a different angle.

62mg is such a small dose are you just starting it? How long have you been diagnosed?

Thanks,
Chloe



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Wylee
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PostSubject: Re: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Fri Jul 27, 2012 2:43 pm

Chloe, my doc gave me Zofran to take to ease the nausea from the Diamox. It is the same med cancer patients use, so it is powerful, really helped me when I was on a high dose of Diamox.
The tingling of hands and feet does eventually get to be more of a gentle reminder that the Diamox is at work than the annoyance it is early on. I have been on Diamox for two years and I don't really notice it any more. When that actually stopped being an issue, I don't remember. I tend to be able to block out a great deal of my symptoms. I have developed a mind set to ignore the bad stuff (I have been dealing with this crud for over 4 years). I am currently only taking one 250 mg tablet of Diamox/day. I had been on much higher doses and found that the extended release capsules (Sequels) had less side effects. You may want to try that. I also took my night time dose right before bed so that I was asleep by the time it started to take affect.
I was able to go on the lower dose post lp shunt installation.
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Sophiasmom
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PostSubject: Re: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Fri Jul 27, 2012 4:06 pm

Dear Chloe;
I would be happy to look at your sleep study to determine what they missed. the problem is that most labs use "recommended" hypopnea criteria. and they will miss most cases of mild sleep disordered breathing this way. there is evidence that using more lenient criteria like the "alternative" criteria or Chicago criteria is actually more accurate: http://www.ncbi.nlm.nih.gov/pubmed/21700494
I do not trust anyone but Stanford to diagnose my and my son's OSA. the other labs could not detect it; 3 labs in Las Vegas! but it is definitely there as if I do not treat it I am like death. again, ANY hypoventilation will make our ICP go up and the IIH worse. it doesn't have to be something that the sleep medicine "experts" think is significant.
Sleep apnea was really only discovered in the 70s, and CPAP not invented til the 80s. UARS not described until the 90s and very little is known about it. it is a science in it's infancy. in your situation I would recommend going to Stanford. even they do not completely understand the relationship of ICP to OSA.

do you have insomnia? do you wake to use the bathroom at night? wake with a dry mouth? I assume you wake with headaches, have problems with memory, attention and concentration. do you snore? again there might be clues on your sleep study that they ignored, that would help determine the yield of repeating the study at Stanford.

Deb
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Cdottie
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PostSubject: Re: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Fri Jul 27, 2012 5:00 pm

Hey deb,
I'm going to dig up those results and check them out again. Where can I find the criteria for the SDB or UARs, the Stanford criteria??
I'm assuming normal people have maybe an episode of hypopnea during sleep, but that it shouldn't be multiple times or last over a set period of time...
Is this accurate?

I'll write on here when I find it : )

Thanks!



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Sophiasmom
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PostSubject: Re: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Fri Jul 27, 2012 6:39 pm

http://www.ncbi.nlm.nih.gov/pubmed?term=the%20new%20aasm%20criteria%20for%20scoring%20hypopneas
this link will allow you to download the entire paper. you can see how different the different scoring criteria are; they determined that an AHI of 5 using "recommended" criteria is roughly equivalent to an AHI of 15 using Chicaco criteria; making the difference between NO sleep apnea and mild sleep apnea. you may be able to determine which criteria were used to score your study by looking at the definitions. then you can multiply by 3 to determine how Stanford might have scored you. it's not a perfect conversion however, and Stanford has other ways of detecting sleep disordered breathing other than just the AHI. I had esophageal manometry, which can detect UARS in the absence of hypopneas. I believe the hypoventilation from UARS and possibly Valsalva effect from struggling to breathe plus transmission of intrathoracic pressure to the ventricular system could be enough to worsen IIH, even with a technically "normal" AHI.
Stanford criteria are slightly different from, but closest to, Chicago criteria.
on your study, look at the AHI. look at the number of arousals. look at the lowest oxygen saturation. look for a RERA if they calculated one, and an RDI. my oxygen drops to 90-92. well, think about how much you would have to hypoventilate while awake to get a sat like that, which the sleep docs will tell you is NORMAL. that amount of hypoventilation would send me into brain fog within minutes, while awake. the thinking about sleep breathing needs to be seriously adjusted for those of us with IIH.
Deb
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Cdottie
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PostSubject: Re: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Fri Jul 27, 2012 7:47 pm

Wow, Deb! Thanks so much. You very much speak my language and it makes me smile. I used to be in nursing school before getting sick and then switching paths. But medicine long before I had health problems has always fascinated me and probably helps me know when I have to research various things to be well informed about my disorder, options, considerations etc. it's really nice to correspond with someone else who deals with their own health with similar tactics and then it's very kind how you are you concerned with helping others on here and sharing the info. : )

So I found the sleep study:
# of arousals: 30
Lowest oxygen sat. 95% but that's coming from a baseline of 98% (not 100%)
AHI: total all positions 0/h!! Lateral= 1 episode of hypopnea in 6 hours sleep.
RERA and SA ( this is a combined calculation): 6/ h (total all positions), 5/h (supine), 9/h (lateral) - I am not sure why the total number does not reflect the combined total of supine + lateral? But 6/h is what's stated in the beginning mini summary.
RDI: is identical to the above no changes.

They do report bruxism, some sleep taking ( note I took ambien Cr that night as I knew sleeping would be difficult under these circumstances and they advised me to take a sleep med- sleep talking is a side effect), mild light snoring was heard ( described as if barely heard- wonder if  more mouth breathing can be interpreted as very mild light snoring? As I am a major mouth breather due to deviated septum) further states that I do not meet criteria for any sleep disordered or obstructed breathing disorder despite some additional arousals.

Anyways I huge   thank you Is in order!
And please please if I can ever be of any help to you, provide any info at all, I have done quite a bit of research myself do not hesitate to ask. 

Have a great day!
P.s. I go to Arizona on Monday for a CT venogram with manometry measurements to lastly and officially rule out any bony obstructions, impediments, and/ or sinus narrowing, gradient discrepancies. As far as I'm concerned I would rather have a styloid process decompression than a shunt. A surgerical fix without a permanent device seems more attractive than the alternative.



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Sophiasmom
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PostSubject: Re: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Fri Jul 27, 2012 9:20 pm

hi Chloe;
you're welcome! and I think I need to learn about the styloid process decompression so I know what that's about as I had not heard of it. I am looking at my head, my mother's head, and my son's head (we all have this problem) and my son has a ridge down the center of his forehead as if he has mild metopic synostosis. my and my mother's foreheads are quite narrow compared to other people, as if we have had it too. as if there is just not enough room for our brains. so a decompression makes sense to me too. and a foreign body in me is not going to go over well with my chemical sensitivity.

it sounds like you had an excessive number of arousals, which were respiratory event related. a RERA is a respiratory event related arousal. I would read this study as UARS. check out: http://doctorstevenpark.com/sleep-apnea-basics/upper-airway-resistance-syndrome
I suspect that if you went to Stanford they would find more, and more significant sleep disordered breathing, esp.. on the esophageal manometry. you are not too far from them, it's worth a trip if your insurance will cover; mine did. if your RERAs were greater than 5 then that is significant. ANY snoring is abnormal. at Stanford they told me that if I can hear my children breathing in their sleep, that's sleep disordered breathing. if you can hear it, the airway resistance is elevated. airway resistance creates a valsalva; toxic for us!
bruxism is definitely associated with OSA. it has been shown to be cured by tonsillectomy!
mouth breathing is highly associated with OSA. a deviated septum tells me that your jaw is too small; this is how they form. the mandible forms too small, and the tissues inside the jaws get pushed upwards as there is nowhere for them to go. the soft tissue isn't any smaller just because the jaws are shrinking. this is the problem with the human jaw, which has been shrinking for the last 10,000 years. so a deviated septum is a sign that the airway is too narrow from excessive soft tissue. you should definitely consider getting that fixed and getting your turbinates reduced to open the nasal airway and stop mouth breathing. you cannot stop mouth breathing with IIH unless your nasal airway is better, as you cannot afford to hypoventilate.
if you have been mouth breathing since childhood, this would have created a more narrow airway as your face developed.
http://www.facefocused.com/indexb.html
read some of the articles on this website. this is our orthodontist; we drive there from Las Vegas monthly to see him. he is expanding my kids' jaws. I am not sure how much he has on there about mouth breathing but it's a big part of the process to fixing the airway in childhood; eliminating mouth breathing. if you have any of these similar issues he talks about, you are so close it would be worth going for a consult. he is saving lives.

I was listening to a teleseminar last night from Dr. Park's site and they were talking about sleep apnea avengers; people who are spreading the message to help others get help for the problem which so many are oblivious to. I guess I am a sleep apnea avenger. I think it is so much more important for us with IIH to consider. I hate to see the people here not know about this factor which I think could help them reduce their medication and maybe even avoid a shunt. I am not practicing because of my disability so I think this satisfies something in me that needs to reach out and help others. my suffering is meaningless unless it can be used to help others.

Deb
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Cdottie
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PostSubject: Re: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Fri Jul 27, 2012 11:32 pm

All of this is very interesting. And I will certainly bring up these thoughts with my doctor again for further consideration. I have actually already had a deviated septum correction surgery plus turbinate reduction (shaving) in 2008 when I had a left maxillary cyst and polyp removed, done at same time. However based on recent imaging from th past year the septum has narrowed again. 
Not sure if that just happens or is atypical to regress and return to baseline that quickly. 
Either way all important issues that I will raise again!

Glad you can find theraputic value in helping others, I find that very rewarding myself : )

As far as the styloid process- it Is a bony projection near the jugular everyone has it. Its a matter of whether it is symmetrical bilaterally or whether on side is found to be more prominent projecting further. A unilateral abnormality would be the key to a significant finding for a suffer of IIH. It has been postulated very recently that thin people with IH are possibly more likely to have this type of finding and would benefit from decompression and/ or possible Stenting. What can happen with styloid abnormality 
( note: only ruled out through ct venogram with manometry measurements) is it can compress the internal jugular vein by poor outflow and obstruction this can lead to venous hypertension which then raises ICP. A venogram will check bony structures and gradient measurements to make this determination.

I have two articles related too this, in full PDF format- I can't post a link here because they were emailed to me and are not available in full view online unless paid for. If you like I could email them to you?
They are titled:
Styloidogenic Jugular Venous Compression Syndrome: Diagnosis and Treatment: Case Report
And
Dural sinus stent placement for idiopathic intracranial hypertension
Both published in 2012.



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stillbug
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PostSubject: Re: How long till side effects of Diamox/CAI's go away? Or for you, do they never go away?   Wed Aug 22, 2012 11:10 am

I don't know if you're still looking for feedback on your question or not, but I'll share what I experienced.

Perhaps you're already aware of this, but in case you aren't, it's important to know that diamox has a major effect on blood chemistry. Because of the nature of the drug you can automatically expect to have CO2 levels that are in the too low range and chloride levels that register as too high. But it also messes with your calcium and potassium levels - both things you can take supplements for - which help minimize the side effects felt while taking diamox.

It's important to have a basic metabolic panel (blood test) on a regular schedule and to monitor the results yourself. Low blood calcium levels (hypocalcemia) can cause the same symptoms as diamox does, namely numbness/parasthesias in ones hands, feet, around the mouth and lips. Having low potassium levels (hypokalemia) can cause fatigue, muscle damage, and muscle weakness or spasms, among other things. You should also keep an eye on your creatinine levels as well because that is an early indicator of possible kidney damage.

I've taken diamox for around two and a half years. My highest dose was 1500 mg. At first the side effects were a nightmare until I educated myself on the above and began getting monthly blood tests. After taking those supplements my body needed, the side effects seemed to become more bearable and even faded away for extended periods of time. I think when the other things were off, then the tingling, muscle cramps, nausea and fatigue were exaggerated even more.

The sun sensitivity will never go away though. Not until you stop the drug. I tend to hug the shade, use sunscreen a lot, and learned to like hats, lol!
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