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I started on Diamox 62.5mg twice daily… the night before last. With my first dose, I slept throughout the night (first time in quite a while) but felt so tired upon waking… very sensitive to light, but did not feel the awful POTS nausea, and intense headache that I usually feel with light sensitivity. The day time dose made me so drowsy, I could hardly make myself get dressed to pick my daughter up from school. I also feel very loopy on it (kinda scary in the daytime). As it wore off in the later afternoon, I was so GROUCHY and my POTS symptoms were bad. I felt I could not control my grouchy behavior. When I took it again last night, I felt loopy, drugged, delirious, giggly, etc, and had a horrible time waking this morning with numb arms, hands, and feet. Today, I took half of that dose (quarter pill, so 31.25mg.) I am still feeling pretty loopy, and my neck pain is intense. Do others get side effects? Do you have to work your way up in dosage?
Other side effects I have noticed-different vision issues, like sometimes things look like the scrambled effect on TV… a flare up in my interstitial cystitis, IBS symptoms increased, “munchies” which is actually a very good side effect for me (I have lost WAY too much weight). I also feel like I have increased neck pain, especially today on the low dose, and I have jaw pain- myofascial type jaw pain which seems to be new. It actually relieves my nausea which I have been suffering with terribly prior to starting it. 3 hours after taking the low dose, my headache on the back of my head and neck are officially back, even though I feel I am still feeling side effects.
Hmmf, I feel like it controls my nausea, reduces my headache (temporarily) and even some of my other POTSy symptoms, but has too many side effects for me to function. I think I may get better results in headache reduction if I could tolerate a higher dose. My doctor gave me the freedom to play around with the dosage, and quite a supply… but not sure what to do.
Okay, so my husband left work to pick my daughter up from school, since I was feeling loopy and dizzy and my headache came back. So I decided to take another 62.5mg to see if it helped the headache and it did. Reduced it pretty significantly. But again, I am just too loopy and tired to leave the house. It helps some things, but it’s like I am trading some POTS symptoms, for wacky side effects. 🙁
Wow, that is a strong reaction to the Diamox! I know we are all different, but I haven’t noticed anything like that at all with the Diamox. I have been on it about 7.5 months now. I take 4 125 mg pills a day to keep the headaches, dizziness and tachycardia away. If I get a headache despite my regular dose schedule (and I think consistency is part of the key, so we don’t have huge swings of CSF pressure building up, then reducing, etc.) I take an extra pill and that usually does the trick.
I also have to take A LOT of sodium bicarb (I use the pill form that have 625 mg each pill and have to take 7 of them a day) to keep from being too acidic from the Diamox. I did find that being too acidic brings on a lot of symptoms for me and then I thought the Diamox wasn’t working. It took doing blood chem panels every couple of weeks as I increased the bicarb till I finally got to the point where I was back in a normal range and not acidic and then the symptoms were gone.
So, if you aren’t taking bicarb and/or having your blood work tested to see where you are at with acidity, I would start there.
Ourfullhouse, Thank you for the reply. I have increased slowly as the side effects have tamed down significantly, but it still makes me VERY tired. Night before last, I took full 125mg pill before bed, was SO tired upon waking, but was amazed by the lack of headache and nausea when I first woke up. I had to be functional enough to pick up my daughter from school, help her with homework, do things around the house, so I took 62.5mg 3 times during the day, but feel breakthrough headaches and POTS symptoms at times. Last night I got brave and took 250mg before bed. I woke (after forcing myself out of bed) to no headache and had mental clarity, no nausea. I am still extremely light sensitive, and having breakthrough head and neck aches. I know I need to figure out the proper dose still. I have been drinking LOTS of baking soda in water. I do not have anyone knowledgable to order blood panels at this time. I do have pH strips and have been testing my saliva to be sure I do not get too acidic.
My “POTS knowledgable” cardiologist has never tried Diamox with any of his POTS patients, but was willing to allow me to try it. He gave me a 3 month RX of 125mg twice daily, and told me I could play around with the dosage. He wants me to report back to him in 2 weeks.
I tend to react to many prescription medications, in unexpected ways, so I guess this may just me adjusting to the meds? I do still have very numb hands on it (at times), and increased light sensitivity, but I had light sensitivity before starting on it, just seems even worse now. I had vision issues on/off before starting it, but strain even more now to try to read these threads on computer screen. My giggly delirious thing seems to have passed. I still have increased appetite which is AWESOME!
I think you are right, I need to take it at a more structured/ scheduled times. Today, I will start a diary of symptoms and times, and try to be consistent when I start feeling it is helping the most. Also, I think I will ask the pharmacist for Sodium Bicarb pills when I am there next time.
Thanks again for feedback!
MattiesMom,
You are welcome! =)Your cardiologist that gave you the Diamox RX can order the blood work. It is just a regular CBC and Chem Panel. Nothing weird or fancy. It would have been good if you had a baseline of where you were before you started the Diamox (maybe you have some old labs you can look at to compare to?). This is standard of care when someone is on Diamox. I also had a problem with my platelets, went lo and then high, etc. when I was running too acidic. That is why the CBC is good to do at the same time as the Chem Panel.
(side note: always ask for a copy of your lab results so you can track for yourself how your acidity is doing… sometimes you could be within normal limits, but only by one number and you went from one end of normal to the other and you would want to add more bicarb in that instance, whereas some doctors tend to only look to see if anything is outside of normal. I’ve even had doctors miss things that were outside of normal, telling me all my labs were normal, only to find out once I got the hard copy of the report that 2-3 things were NOT within normal limits. Argh!)
For me there was a time when I was ready to give up on the Diamox because the symptoms from being too acidic were as bad as the POTS, etc. It was only due to the diligence of the lab testing and increasing my bicarb till we could see my numbers finally be in the normal range that I was able to make this work for me. And, it certainly has paid off!
Baking soda in water is really hard to measure and again I will speak to consistency being key here. At first I was filling my own gel caps with baking soda, but it was time consuming and I had no idea how to gauge how much bicarb I was getting. The bottle of bicarb tablets is cheap, so easy to use and now I know exactly how much I am taking. http://www.amazon.com/gp/product/B002CPDF9E/ref=oh_o00_s00_i00_details
I also get the tingling in my hands and feet, like they are going numb. I had it much worse in the beginning and now go days/weeks without it and then have a day where I notice it again. So, I think that is one of those things that gets better the longer you are on it consistently.
Thank you for the advice. I did have my blood drawn at the ER about 1 1/2 months ago, they checked my electrolytes and a few other things. I know I took home a copy, I’ll have to look around to see if it may be helpful. I guess I can call and ask my cardiologist to order the bloodwork. How often do you have it checked?
Hmm… that link to the sodium bicarb pills is not working. Will you retry or tell me the brand and where you purchase them?
I really appreciate your help!
Matties Mom,
Copy and paste the link I gave for the bicarb. I don’t know why, but none of the links here on the forum ever work for me either. I have to copy and paste them to open them. Must have something to do with how web links are set up in the programming, waaaaaay over my head. lol.Every 2 weeks to check your blood is good. So, if you could wait till you have been on Diamox 2 weeks, unless you start noticing more symptoms that make you think you are getting too acidic. It is best to stay on a set dose for the two weeks so that your body can adjust to it and that way you will get better information from your lab work when you get it done. If you are taking different amounts different days of the 2 weeks then you won’t really know why your labs are what they are.. make sense?
When I first started I was taking one tablet with each Diamox I took, just to have a place to start and see how I did. 🙂
Ourfullhouse,
Thanks again! You are so helpful to me right now. I really appreciate having someone to talk to about this. So basically, should I ask my doctor to just watch how acidic / alkaline I am?
I actually came on here today because I came across a BIG bump in the road and I am pretty scared. I had increased my evening dose to 250mg Diamox, and that was great for a couple nights now… But last night, when brushing my teeth, I suddenly developed an allergic reaction to the toothpaste I have been using for a while (a natural toothpaste that is made with bee propolis, so apparently I decided to develop an allergic reaction to bees). My throat was closing and I couldn’t stop gagging and coughing for a while. I took a really high dose of natural allergy meds (with bromelain, quecertin, stinging nettles) and it mostly resolved within a half hour or so. (I am already taking 2 zyrtec & zantac am and pm). By bedtime, my headache was bad. I took the 250mg Diamox and hoped the headache would be better when I woke up. I ended up waking up during the night in misery with the headache, drank tons of water, went back to sleep. This morning, I have a full blown migraine. But it seems different than the normal CSF back of the head and down the neck headache. I was feeling it at the top of my skull, but now it feels like I got hit on the back top of my head with a bat. I am so light and noise sensitive and nauseous. I hung a blanket over my window, I took a vicodin, and it has made a little dent in the pain… but I am scared to take Diamox. Not sure why it didn’t help the headache last night. I wonder if I take too much, will it cause a headache from removing too much CSF? Or maybe my allergic reaction last night has something to do with it? I know you can’t answer these questions, but it would be a comfort to hear someone’s opinion.
Side note, I copied and pasted the link early last night, and still that amazon link wouldn’t work.
Try this link instead and let me know if it works: http://www.amazon.com/Bicarbonate-tablets-relieve-heartburn-antacid/dp/B002CPDF9E/ref=sr_1_1?ie=UTF8&qid=1333816857&sr=8-1
I’m not a doctor, but I would think your reaction to the toothpaste brought on the headache you experienced/are experiencing. Just because Diamox takes care of CSF headaches doesn’t mean you can’t get a headache for a different reason. So, don’t be too quick to judge the Diamox or drop it is what I am thinking. You need to do what you need to do, of course.
Do you have an epi pen? Sounds like you NEED one!
Pain meds don’t do much for migraines, it is the nature of the beast. For me, the best I can hope for is that pain meds help me not care as much or help me relax a bit/sleep, etc. Have you ever tried a high dose of caffeine when having a migraine to see if that helps? I have caffeine pills on hand as that seems to the the thing in Excedrin that really helps me with a true migraine (when/if I get one, which I don’t very often anymore).
I have been reading up this morning on hypoadrenergic POTS, since it is mentioned here on the forum a lot. My POTS has never been classified one way or another, but I’m now thinking mine is also the hypo form, or the combo version of PD and Hypo. I found a great website and am learning a lot about how my body does/doesn’t cope and how even when we think things are working/stable, one can wake up one day and those things no longer work, so it is a constant figuring out (the author calls it decoding) of how to get back to more stable again. Let’s hope this link will work: https://sites.google.com/site/hyperadrenergicpots/Home
Now, I have been thinking/hoping that the Diamox is the “cure” for my POTS, but I am now seeing that several symptoms are still there, even though several are gone/better. I can definitely see the effects of the excess adrenalin still happening, and then the crash that follows the next day. I would guess there is still a matter of time and healing even while taking Diamox. And, then the next pieces of the puzzle with the cytokines that Dr. Diana has explained in Part 2 of her theory, that will hopefully help too.
I would be curious to know what all other people are here are taking to treat their POTS, besides Diamox? Is anyone taking an anti-depressant to control the re-uptake of norepinephrine, and if so, which one?
It means a lot to me to have somewhere to “go” with other people who share this same crazy combination of illness/syndromes/genetic defects/whatever you want to call it, lol. Family and friends, as much as they want to listen and be helpful, just don’t understand.
Ourfulhouse,
Thank you once again! I did read your comments yesterday, but my migraine was so severe, looking at the computer screen hurt, so I took the day off of the computer. I decided to take 1/2 doses of Diamox with some Sodium Bicarb pills my hubby got from the pharmacist -650mg tabs similar to the link. (The new link works when copied and pasted into browser, Thx). I could actually feel the Diamox wearing off every couple hours, as the head neck pain is different than the other migraine pain. I am charting now in a journal. I think you may have been right about the allergic reaction triggering the migraine. I spent the day in my room quiet, and dark. Today I was relieved to wake up without the awful migraine. Today was one of the most functional days I have had in quite a while. 🙂 I feel that I am reading my body better and figuring out the Diamox dosage better and think the sodium bicarb tabs may be helping more than the nasty baking soda water. 🙂
No, I do not have an epi-pen, but after what happened with the toothpaste (and a handful of similar experiences), I think you are right.
My cardiologist wants to add low dose (compounded to be lower dose) beta blockers. Have you tried beta blockers, or have you heard anything good/ bad about treating EDS POTS patients with beta blockers?
I am curious about the anti-depressants as well, as he also mentioned SSRIs as a possibility. I have tried SSRIs in the past (when doctors thought I simply had chronic fatigue/ fibromyalgia, and migraines…before I developed POTS and before we knew about Ehlers-Danlos)… and I had bad reactions and a hard time trying to adjust to each one we tried before giving up. (Though I think I had the best run with Welllbutrin for a little while there.)
Having somewhere to go to speak with people who understand means a lot to me too. I appreciate the support.
I started on Diamox 62.5mg twice daily… the night before last. With my first dose, I slept throughout the night (first time in quite a while) but felt so tired upon waking… very sensitive to light, but did not feel the awful POTS nausea, and intense headache that I usually feel with light sensitivity. The day time dose made me so drowsy, I could hardly make myself get dressed to pick my daughter up from school. I also feel very loopy on it (kinda scary in the daytime). As it wore off in the later afternoon, I was so GROUCHY and my POTS symptoms were bad. I felt I could not control my grouchy behavior. When I took it again last night, I felt loopy, drugged, delirious, giggly, etc, and had a horrible time waking this morning with numb arms, hands, and feet. Today, I took half of that dose (quarter pill, so 31.25mg.) I am still feeling pretty loopy, and my neck pain is intense. Do others get side effects? Do you have to work your way up in dosage?
Other side effects I have noticed-different vision issues, like sometimes things look like the scrambled effect on TV… a flare up in my interstitial cystitis, IBS symptoms increased, “munchies” which is actually a very good side effect for me (I have lost WAY too much weight). I also feel like I have increased neck pain, especially today on the low dose, and I have jaw pain- myofascial type jaw pain which seems to be new. It actually relieves my nausea which I have been suffering with terribly prior to starting it. 3 hours after taking the low dose, my headache on the back of my head and neck are officially back, even though I feel I am still feeling side effects.
Hmmf, I feel like it controls my nausea, reduces my headache (temporarily) and even some of my other POTSy symptoms, but has too many side effects for me to function. I think I may get better results in headache reduction if I could tolerate a higher dose. My doctor gave me the freedom to play around with the dosage, and quite a supply… but not sure what to do.
Hi Hon, First, you are giving some wonderful advice on the forum. Thank you! OK, munchies – that sounds GOOD! I knew you were concerned about that. Mast cell meds really helped me with that, too. Do you wear a cervical collar at night? That helps a lot of us — I can’t tell you how many of those I went through (and had to customize with a pair of scissors) before I found just the right one for me. My gut instinct is that your daytime dose of Diamox may not even be necessary for you, but perhaps a bigger dose at night time will suffice? Here’s one weird thing that happens to us as the pressure on our brain goes down: the nerves that were getting squished sort of come back to life for a while and may be over-responding until your brain settles down. I even hear of people have olfactory hallucinations (smell weird things) as the olfactory nerve perks up. Fortunately, that goes away. But my appetite, my moods (poor hubby), my vision, well,most everything went through adaptation, and I’m not surprised. If we’ve had this pressure on our brains for years, then the brain lifts off of the cranial nerves rather suddenly, EVERYTHING has to adjust.
For fatigue that may be left — I think I know what’s going on there, and I am working diligently to fix that. That seemed to be the biggest issue for me that would still come and go, and I REALLY want to fix it (without surgery). I believe I’ve about got that figured out (YEA!), and hope to start (officially) the blood registry to prove what is happening. Then we can treat that (YEA, AGAIN!). I’m working on a couple of meds (almost as easy as Zyrtec!), but will run an official clinical trial. I think it is the same thing that is happening to our other brothers and sisters with chronic fatigue, M.S., etc. Hang in there, OK? We’ll get this! Are you on Gastrocrom or Cromolyn? Oh, when you feel WIPED OUT, can you check your BP and heart rate? If your BP is too low, you may need to cut down on your daytime dose of Diamox, or add a vasoconstrictor (I treat it with coffee — coffee with a lot of fat in it like a Starbucks Double Shot). The fat is actually an anti-inflammatory and it goes into your system slower). Let me know? Big hug, DianaOkay, so my husband left work to pick my daughter up from school, since I was feeling loopy and dizzy and my headache came back. So I decided to take another 62.5mg to see if it helped the headache and it did. Reduced it pretty significantly. But again, I am just too loopy and tired to leave the house. It helps some things, but it’s like I am trading some POTS symptoms, for wacky side effects. 🙁
I’ve told you all that I will be very transparent, right? Well, while I was adapting, I went through times where I laughed and got those uncontrollable goggles (some of my video outtakes are evidence of that!). Then I went through periods where I could cry on command. Great for acting, but… it all settled down. Actually, before I figured all of this out and started Diamox, I was developing a “flat affect” (I didn’t show much emotion. That is BAD). I was happy to see it return, even though it took a while to settle in. And it DID settle in. Many other folks went through this, too. Our brains are sensitive to pressure AND to the release of pressure. I’m not surprised, but my poor husband didn’t know who was going to greet him at the door sometimes — loopy Diana, sobby Diana or “somewhat normal” Diana!). Always keep ’em guessing! And while we’re on the transparency issue, by libido also went all over the place for a while. Good grief. You would think something would be spared! Nope! And Hon, buckle up — it tooks weeks to months before it all settled back in. Whew! 🙂
Wow, that is a strong reaction to the Diamox! I know we are all different, but I haven’t noticed anything like that at all with the Diamox. I have been on it about 7.5 months now. I take 4 125 mg pills a day to keep the headaches, dizziness and tachycardia away. If I get a headache despite my regular dose schedule (and I think consistency is part of the key, so we don’t have huge swings of CSF pressure building up, then reducing, etc.) I take an extra pill and that usually does the trick.
I also have to take A LOT of sodium bicarb (I use the pill form that have 625 mg each pill and have to take 7 of them a day) to keep from being too acidic from the Diamox. I did find that being too acidic brings on a lot of symptoms for me and then I thought the Diamox wasn’t working. It took doing blood chem panels every couple of weeks as I increased the bicarb till I finally got to the point where I was back in a normal range and not acidic and then the symptoms were gone.
So, if you aren’t taking bicarb and/or having your blood work tested to see where you are at with acidity, I would start there.
Wonderful advice, as always, myfullhouse! 🙂
I’m not a doctor, but I would think your reaction to the toothpaste brought on the headache you experienced/are experiencing. Just because Diamox takes care of CSF headaches doesn’t mean you can’t get a headache for a different reason. So, don’t be too quick to judge the Diamox or drop it is what I am thinking. You need to do what you need to do, of course.
Do you have an epi pen? Sounds like you NEED one!
Pain meds don’t do much for migraines, it is the nature of the beast. For me, the best I can hope for is that pain meds help me not care as much or help me relax a bit/sleep, etc. Have you ever tried a high dose of caffeine when having a migraine to see if that helps? I have caffeine pills on hand as that seems to the the thing in Excedrin that really helps me with a true migraine (when/if I get one, which I don’t very often anymore).
Now, I have been thinking/hoping that the Diamox is the “cure” for my POTS, but I am now seeing that several symptoms are still there, even though several are gone/better. And, then the next pieces of the puzzle with the cytokines that Dr. Diana has explained in Part 2 of her theory, that will hopefully help too.
I would be curious to know what all other people are here are taking to treat their POTS, besides Diamox? Is anyone taking an anti-depressant to control the re-uptake of norepinephrine, and if so, which one?
It means a lot to me to have somewhere to “go” with other people who share this same crazy combination of illness/syndromes/genetic defects/whatever you want to call it, lol. Family and friends, as much as they want to listen and be helpful, just don’t understand.
Yes, yes yes! Diamox doesn’t cure POTS, but it is where we need to start. Otherwise, we are just bailing in a leaky boat! YES! Epi pen! And a mast cell stabilizer (Cromolyn sodium). I take a wee bit of Cymbalta for hyperadrenergic POTS, and since us hyeradrenergic POTS folks spit out SO much nor-epi, lots of magnesium citrate is a MUST! Mine was SOOO bad, that I had to get on Xanax, but don’t need as much now. That is very difficult to get off of, but my doc was shocked when I was able to go DOWN on the dose. And YES! The next step coming up will help us even more! We may not be able to get rid of EDS and we may have to grapple with some POTS, but if we can just get it down to a nuisance, I for one, will be thrilled with that! Our kids have SO much hope now, especially if we watch their head circumferences from a young age. My son, as many of you know was at death’s door for three years. He was too ill to even be tutored. Now he is rarely symptomatic, and it is life changing for everyone. My daughter swore her POTS was gone forever, until we took her off of the meds to show the doctor her blood work and tilt table. Whoa. Yup — the meds were taking such good control of it that she didn’t even notice it! (Ahh, youth!). They seem to bounce back so quickly. What’s that in the air? HOPE, my friends. For all of us! I just heard from a patient who was dumped in a nursing home. She is out of her wheelchair and getting her own apartment now AND A JOB! They had written her off. Such a great ending to an incredibly sad story. It gives me goose bumps…. 🙂
Dr. Diana,
Thanks for reading through my “adjusting to Diamox” thread. I hardly have any side effects, not feeling super sleepy and loopy or anything anymore. I have increased the dosage quite a bit, still tinkering but find most relief at 125 mg twice daily then 250mg at night. I do have problems when it wears off though, which I really try to avoid because I get very grouchy, panicky, and my back of the head and neck hurt, etc. I am taking the Z/Z but not on Cromolyn Sodium yet. I am hoping that my POTS cardiologist will let me try it, I think I will try to get the nerve to call and ask him tomorrow. He had suggested adding beta blockers next, but I really do think I fit the Mast cell disorder pretty perfectly, and believe it explains a ton… going back to being allergic to everything as a kid (287 of 300 skin pricks on my back), then developing large painful lymph nodes everywhere in my body that have never gone away since I started developing them in large qualities in 2003 (biopsied many years ago- reactive lymph nodes), tons of random allergic things that happen to me, wheezy wet breathing, interstitial cystitis, getting so incredibly sick with a long term migraine from MRI contrast, just way too many things to list. I have read that beta blockers can cause mast cells to degranulate, and I can just see that turning into a horrible cycle. My newer primary care doctor gave me one months worth of xanax while we trying to figure out what was going on (before I figured out myself that I had POTS and found a POTS cardiologist to confirm it). I made that xanax last a month and a half, but now that doctor won’t refill it. :/ My POTS cardiologist doesn’t prescribe xanax because he explained that it isn’t true anxiety… it’s a haywire autonomic thing. I was just using it to help when I have a freak out attack, and to help me sleep. I take Magnesium Citrate at night.
On a lighter note-The hope you brought up… That is a great to know that a patient has improved so much! 🙂 And thanks for making me laugh about your side effects and explaining the way our brains may react to losing the built up pressure.
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