Diamox - New Trial For Me

[issie]

Well, I'm Dr. G's first patient (as far as I know) to try Diamox for symptoms related to POTS. I'm not the first one on this site however, I did a search, here on the site, and people as far back as 2004 have tried it. (Some have used it to help with Chiari problems.) He made sure to let me know that he doesn't subscribe to all that Dr. Driscol says on her site www.prettyill.com but thinks it is worth a try with the med, because it has some properties that may help.

Today is my 5th day and so far so good. There are some side effects, but nothing that makes me have to stop taking it. It makes me feel like I've taken a tranquilizer though. I mean . . .mellow. I have been sleeping well too. I didn't take any pain meds last night and slept pretty good. I took my CPAP off in the night, cause it was bugging me and my husband said I didn't hold my breath or snore ----this is also supposed to help with central sleep apnea. I guess it must have worked, last night at least. We will see what more time brings.

I thought I'd start a thread on this and maybe if some others have tried it, they can chime in.

One thing I'm noticing is less head pressure and things are draining . . . .from my nose, ears and down my throat. I guess that's a good thing. I also have less edema. I can get my rings off my fingers and I have ankles now. Been awhile since I've seen those.

On the negative, I notice ringing in the ears and a bit of blurry vision and because of my intolerance to sulphur . . . .okay this will be a little TMI . . .it is causing some issues with flatulence. (I never have that.) But, hoping my body will adjust to it and it will settle out. One word of caution with this med is it will make you sun sensitive and it can cause dizziness. Today, I took 1/2 of what I had been taking and I'm more with it . . .not so tranquilized. You also have to keep a watch on your acid balance and use baking soda with it. I have some ph tape and use it a couple times a day. It will also lower you potassium levels and you have to either eat foods high in potassium or take potassium. As far, as I know that's all you have to watch for. For the first few months, I will be having blood draws to check potassium and CO2 levels - to make sure I'm keeping them in balance with what I'm doing. Then, the rest will be time and waiting to see what happens.

Here comes the research people . . .told you I don't mind being the first to try things. Let's hope this experiment will go well. My husband asked me this morning was I the first of his patients that he's given this to . . .I said "yes, as far as I know". He smiled and said "Ahhhh, so you're the "grinney" pig". Well, that did make me grin. Ha!Ha!

Issie

[jpjd59]

Issie:

I'm keeping my fingers crossed for you. Good luck!!!

Pam

[corina]

Best of luck on trying this Issie, hope it will continue to work well for you!

[POTLUCK]

Good luck Issie, whether it works by Dr. D stuff or something else.

[bellgirl]

That's very interesting...I'm glad it is working so far for you....I keep telling them that CSF is coming out of my eyes, when I'm symptomatic, but they won't believe me. I wonder if it would help with that!! Guinea pigs are cute, Issie, So don't mind being one; plus you are so knowledgeable, and I think it should work well to get out that excess fluid, being that you have Chiari, too. Do you have trouble with migraines, also?

[brethor9]

Go for it Issie!!! I am so crossing my fingers and toes for you!! My worst symptom is head pressure....I may have to as my specialist about this med

Bren

[issie]

Do you have trouble with migraines, also?

Yes, I do have migraines - but, thankfully, they are mostly silent ones with visual issues ----beautiful silvery stars and double vision -----but, when the headache is there it's horrible. I also always have a sort of head pressure. I've told my husband that it feels like I need to squeeze it and get some fluid or pressure out. He's even tried that ---it didn't work. But, I've been having issues with my eyes, feeling like they will pop out of my head and it hurts to look up. The eye doctors haven't been able to find a problem with my eyes though. So, we will see if this helps some of these things. Plus having EDS and a bit of a cerebral tonsil drop - may even help to get that back up where it should be and if there is pressure on my brain stem, then maybe some of my POTS symptoms "might" get better. So, we will see.

And with my high bp - getting some of this edema off will help to bring that down some too.

Issie

[bellgirl]

Do you have trouble with migraines, also?

Yes, I do have migraines - but, thankfully, they are mostly silent ones with visual issues ----beautiful silvery stars and double vision -----but, when the headache is there it's horrible. I also always have a sort of head pressure. I've told my husband that it feels like I need to squeeze it and get some fluid or pressure out. He's even tried that ---it didn't work. But, I've been having issues with my eyes, feeling like they will pop out of my head and it hurts to look up. The eye doctors haven't been able to find a problem with my eyes though. So, we will see if this helps some of these things. Plus having EDS and a bit of a cerebral tonsil drop - may even help to get that back up where it should be and if there is pressure on my brain stem, then maybe some of my POTS symptoms "might" get better. So, we will see.

And with my high bp - getting some of this edema off will help to bring that down some too.

Issie

I have the same issue with my eyes. I had double vision all last night trying to watch a movie, and the vision is so blurred in my right eye, that I'm not even bothering to wear my contact lenses!! I hate it when I can't see properly; so I guess I have silent ones, too! Then my eyes drain excessively, because of the pressure. I tell them this every time I go in, and they just look at me, like they don't know what to do!! It's frustrating and it's my biggest issue right now. When It happens to both, I'm in a bad way

I am one with hypertension, too, so I can relate to the edema. I even take a small dose of hydrochlorothiazide, too. I'm always drinking like crazy

[ramakentesh]

I find it very surprising that your doctor would prescribe a medication that has been barely researched in POTS and has no published research basis.

That being said, I know that it is being tested by some research groups and Im not talking about Driscoll et al.

Edited July 25, 2012 by corina

[issie]

Well, just an update. Still on it and it's still doing good. There is really a balancing act with the ph though. I'll start to feel ucky and go check my ph and I'm way too acidic - drink some baking soda and in a bit - start to feel better. I was up on my feet and moving around most of the afternoon and my blood pressure and pulse rate were much better. It did the bp hike with standing and tachy with the drops - but, when I sat and did my monitor everything settled out faster than usual. I have not been wearing my CPAP and feel like I'm sleeping as well as I do with it and my O2 levels are staying in the 90's. Not dropping down in the low 80's. I'm not having the head pressure - as bad. When it's time to take more meds - I start to feel it. I'm still having the ringing in my ears with it though and that's not fun - but, is tolerable. I had to lower my day doses and take the meds three times a day rather than twice. My edema is soooooooo much better.

Rama, can you post the other research on Diamox from the other research groups. I'd be interested in seeing what they have to say about it. I was really happy that Dr. G. let me give this a go. When I've tried nearly every other thing available and not successful - you try whatever, to see if it will make a difference. I don't mind being the first one to try things. I have done my research and usually know what I'm getting myself into ----BEFORE----I agree to do something. Some experiments have not been so good - others, and hopefully - this one, will be a success. Let's hope so. I've had things work for a few weeks and then something go wrong. But, so far, so good.

I also am doing things to suppress TNF and B-cells - went back on turmeric and ginger and also using astragalus. So, these things may be playing a part in helping me too. With the autoimmune things - I'd rather try natural things for this then go on meds. So hoping this will be enough. Supposed to have autoantibodies checked again soon. So, we will see. At least, I'm feeling better. Not in so much pain. Seems to be helping with inflammation.

Issie

[issie]

Well, it's around the 3 week mark and I started having bad chest pains and horrible ringing in my ears. The chest pains were very painful and I think may have been connected to being too acidic. I couldn't get my balance with the acidity that it caused - no matter how much baking soda I drank. That, in itself, will make you feel bad. It did help the head pressure and initially gave a calming effect to the sympathetic system. I may have been able to stay upright a little longer - before the dizziness set in. But, over-all the benefits were not good enough to off-set the side effects. The diuretic effects were not enough to pull my edema down enough. When I first started it seemed to help - but, then that benefit went away with time. It did not help my POTS symptoms as far as the sympathetic overdrive response or the tachy.

So, for me - this isn't the miracle drug. I still feel like I'm having the fluid build-up in my head and not sure what else can be done about it - other than a shunt. But, they say that those with EDS don't do really well with that approach. So, back to the drawing board.

Issie

[jpjd59]

Issie:

Sorry to hear this wasn't the "miracle drug" for you. I was really hoping that it was. I have to give you credit for trying though. You are a very courageous woman!!!

Pam

[corina]

Ditto what Pam said, you are a trooper. And thank you for sharing all your experiences, others may benefit from it!

[Guest Alex]

Issie,

that's a bummer :-(

Sorry it didn't work for you, still you have to give yourself credit for trying.

Alex

[diamondcut]

Same here,

Well done for being brave enough to give it a shot, i think so many of us feel we have nothing to lose half the time by trying new things.

Im sure you already have read up on whats the next pill to try though and mentally planning how you persuade your Dr to give it to you!

I have a list made, isnt that sad!!!!

[issie]

Thanks everyone for your support. Yeah, diamond - got the next idea coming up. Ha!Ha! Glad, I haven't hit a dead end with ideas. This one I don't need a doc for. I can try it myself. So, we will see.

Issie

[bellgirl]

So sorry Issie; I know you were hoping for an answer. Sometimes it just isn't the one that logically makes sense! I hope you are able to find some supplements to find relief. It's awful to have too much fluid hanging around in your head:o( Wish they had an answer for you, but good job on giving it a try

[issie]

I still think this is part of my issue. Last night, I had a horrible headache and pressure in my eyes. I took 1/4 of the diamox and put an ice pack on my neck and took a muscle relxr. and finally things started to ease up and drain. I finally went to sleep. Woke up some better - but took the herbal thing - similiar to diamox - this morning and now feel better. Neck still hurts and feels tight and still have pressure - but, having a better drainage and the pressure is easing up. I do think there is some type of blockage of the spinal fluid with me and this is something I need to pursue. It may be that I will only be able to take the diamox once a day and less of it. So, haven't given up completely. Having been off of it a few days - I really noticed the difference it was making. But, will have to figure out a better way to not be too acidic - cause the baking soda wasn't working.

Issie

[issie]

Looking back on this, I think this may have been what threw me into Chronic Kidney Disease. The edema I got continued to get worse. I had heart work ups first. Then kidney. I was in 3rd stage CKD.

Good news is I reversed it. I became Lowfat, whole food vegan. Also addressed MCAS. And Addressed Lyme and coinfections and Protomyxzoa Rheumatica that mostly addresses the immune system and inflammation. Proud to say I'm now in Stage 1.

Thinking about science and what we now know about the brain and it having a lympathic system. Makes sense there may be a backup if that lymph isnt draining properly. But being a diuretic is not so good for POTS, We need more hydration with POTS - not less. (My doc feels part of the issue may be connected to the biofilm that surrounds the protozoa and adheres to the vein walls causing issues with flow and vessel constriction and dilation. He is aware of surgeries for CCVSI and says it can help temporarily - but within a time period it usually clogs again.)

Some of the side effects of this med along with baking soda (because of the acid it causes) is kidney and heart failure. Baking soda can actually hinder blood flow. (I have references if someone wants them.) Was a very bad trial for me.

Issie

[SarahA33]

Hi Issie.. If I remember correctly I think this is one of the meds, they used the generic name, acetazolamine, that was brought up when deciding on an epilepsy medication. I never went with it, after reading your post it sounds like I made the right call. Im sorry that you went through all of that.. Going from stage 3 to Stage 1 is a huge accomplishment!

Curious to know your thoughts on ccsvi, I posted a video recently by Dr. Zivandinov who conducted a huge MS study on it after Dr. Zamboni came out with his research. The video is in TVAM Treatment

Im happy you are doing well.

Sarah

[DizzyGirls]

My daughter just tried this last year, but only a couple of doses. Lowered her blood pressure too much. Would almost pass out every time she stood up.

[ramakentesh]

Ccsvi has zero research basis in pots

[issie]

This sure wasn't a help for me. And very possibly Caused more issues.

My doc does NOT recommend this nor does he feel the surgery for CCSVI is beneficial for long term help.

Issie

[issie]

Also of huge note - I found articles on baking soda showing it hinders blood flow. Which is already a problem with POTS.

With Diamox you are to take baking soda to counter the high acidic environment it causes. An acidic environment in the body is dangerous for so many reasons.

Diamox is a diuretic and we need our brains and our bodies hydrated. (The hypothesis of the suggestion is hydrocephalus- too much fluid in the brain. Usually measured with a spinal tap.). My head pressure got better when I addressed my MCAS with meds for mast cell issues. Those meds still help me with this.

Also Diamox is a sulfa drug. Those with CBS mutation with methylation should also be cautious.

Despite my loving to research - at the time I tried this - I didn't have the knowledge then that I have now. Desperate people, do desperate things. I was desperate- but it went bad for me. Despite some of my more knowledgeable friends questioning me - I decided to try this. Wish I hadn't.

I know some claim to have success with this. But I'm not sure what their long term effects will be. I recently heard the promoter of this hypothesis say she and her family are no longer using it. They have since gone on MCAS meds.

I recently found a video of the guy in CA who does the opening of the jugular veins with ballon angioplasty. He has a video on in regard to CCSVI and Lyme. He also says the effects are not lasting for all. Some get a couple to 6 months help from it. He said he had a few with some improvements for a longer period. So maybe my doc is right that this is only temporary fix and then things are clogged up again. It is a bandaid and doesn't address the root cause.

Issie

[issie]

https://m.youtube.com/watch?v=HKYLOLptkHM&feature=youtu.be

Heres the link on surgery. Doesnt sound like it was a complete fix, But there were some improvements but not for long with some. I think we have to get to the core problem.

Issie