Diamox Response

[CarolS]

Interested to hear Diamox experiences. A little background (sorry for the length of this)...

My 16 year-old daughter has been ill for about 2 years now. Diagnosed with ME/CFS and POTS. She has the usual host of autonomic symptoms--poor temperature regulation,  flushing/sweating issues, intermittent brain fog. etc in addition to constant headache and a lot of spinal pain. The only thing she hasn't had to deal with are digestive issues for some reason. Headache and TMJ pain were two of her first symptoms. She's currently on Ivabradine and standardised horse chestnut tablets + the usual salt and water. A few months ago she started taking a PEA supplement which has been great for pain. Surprisingly great. It targets neuroinflammation/micro glial activation. She's also been doing Perrin technique osteopathy for almost a year now. It focuses on lymphatic drainage in the brain and spine and I think its one of the things that's helped her most.  About a month ago she was the best she'd been in 2 years and we were really hopeful about her getting back into education. Then she got  her first sore throat and cold in 2 years and everything went downhill. I guess the improvement must have led to her immune system down regulating a bit and the cold snuck in. She was back to the worst I've seen her. Horrendous OI and pain. Lying in a darkened room, super light sensitive, etc.etc. And it didn't go away with the cold. Two weeks later she was still like this. Five days ago she tried to get out of bed a bit too early and ended up on the floor with no idea how she got there.

So, that's when I decided I had nothing to lose trying some Diamox I'd ordered a little while ago. I've mostly been on my own finding treatments (I'm in the UK) and there was no way I was going to be able to convince my very conservative GP to trial this. I wish it was otherwise, but it's not. I gave her 1/4 tablet (62.5mg) with little hope of any response. Within 10 minutes she was noticing sensations in her neck and head. Twinges. Fluid shifting, I guess. Within a half hour the girl who had earlier fainted on the floor was walking out to the garden saying she felt much better. It seemed crazy. She has absolutely no history of placebo effect with anything I've tried and I am certain this was not an exception. All this was accompanied by a ridiculous amount of urination, but luckily she was no longer too dizzy to get to the toilet! She took 125mg before bed that night and again, shortly after, her neck was cracking and she was getting random short burst head pains here and there as something seemed to be shifting. Urinating loads to the point where it was getting her out of bed. The next day her light sensitivity and headache was gone and her POTS symptoms were completely under control. The *symptoms* were under control but her HR was still going up to 155. She was active and alert. Basically a 180 degree turn around from the day before. Later in the day when her headache started building up she asked for another dose. She never asks for her meds,  so it was surprising. The frequent urination had settled down by this point. 

Next day I came home early afternoon and found her with all her shades open and writing a practice essay for an exam she's hoping to take (!!) Out in the garden loads. Doing her laundry and hanging it on the line. Over the next few days she seemed to need the Diamox less, so we went down to twice a day. By about day 4 we started noticing that she was extremely fatigued. Sleeping very late and tired all day. Later in the day she started getting tingling in her fingertips (a known side effect). At that point we decided to stop the Diamox both to see if maybe she just needed a "blast" of it rather than a maintenance dose and also to wait until we could consult with a doctor. And that's where we are now. 

I guess this (and the positive response to the cranial osteopathy and the PEA) confirms that there's been an ongoing issue with intracranial pressure that's been causing or exacerbating her symptoms. I wonder whether this chimes with anyone else's experiences with Diamox? Have many of you tried it? Successfully? In an 'as needed' way or as a full-time medication? Any insight would be wonderful.

Oh, note on the PEA--it's palmitoylethanolamide. There's another substance also called PEA, so wanted to clarify.  And, again, sorry for the length of this!

 

 

 

[Tenacity]

According to research, POTS is a state of chronic hypocapnia, low blood CO2 levels, as a result of hyperventilation. Diamox (by inhibiting carbonic anhydrase, which breaks down CO2 into carbonic acid) increases blood CO2 levels.

Thanks for sharing, I always wondered how Diamox might affect people with POTS. I think one explanation of what might be happening is that the symptoms of POTS are a result of a lack of oxygen reaching the brain. Carbon dioxide is required for oxygen to enter the cell, so perhaps the Diamox is allowing the brain to get the oxygen it needs, but isn't correcting the issue that causes the orthostatic tachycardia in the first place, hence the lack of symptoms even in the presence of a high heart rate.

[CarolS]

Thank you for responding! I don't think the action I observed was just at the blood level. There seemed to be a physical relief of pressure in the head and neck. With the second dose we both heard her neck "crack" about ten minutes after she took it and with both the first two doses she could feel things moving--pressure releasing and structural shifting. After the first two doses the effect was less dramatic and the extreme urination also stopped. 

I'm a little confused about the CO2 thing. When researching this I read a lot of Diana Driscoll's stuff and also a lot of stuff on the EDS forums. The Driscoll stuff all talks about this lowering blood CO2 levels. She tells people to get tested bi-weekly and levels need to be kept at 22 or above or the Diamox stops working and you start feeling awful. She also says it's a must to take bicarb with it to keep the CO2 levels up. 

Here's someone asking about this on her forum, but I couldn't find the paper she pointed to--http://prettyill.com/forums/viewthread/2414/

Apparently, she's had success not just with POTS symptoms, as I observed, but with eliminating POTS altogether. This seems so counterintuitive as we're all told we have low blood volume and all the therapies are aimed at increasing it. I came across someone talking about this on one of the EDS forums and they brought up the Monro-Kellie hypothesis. If I understand correctly, in relation to POTS,  this basically says that the increased pressure in the skull would make the brain lower blood/fluid volume in  general as a protective mechanism. When you lower the intracranial pressure (if that's your issue, of course) it takes the your body around 5 days to regulate the blood volume throughout the rest of your body and get back to equilibrium. Then the POTS starts to go. This happens with astronauts returning from space. They have POTS when they return because of the pressure/gravity situation. It takes 5 days for their systems to normalise.

https://en.wikipedia.org/wiki/Intracranial_pressure

 

 

[p8d]

I find this very interesting, way above my present understanding but I will read the information in the links.  Please let us know how your daughter does.

[DizzyGirls]

I'm not following the CO2, but both of my daughters have tried Diamox.  It made both of them pass out every time they tried to stand up.  My oldest gets pseudotumor cerebri and they had wanted to use it for that.  Diamox is a diuretic, so no wonder she was peeing like crazy.  But for my daughters, they were losing too much salt and their bp was really low.

[CarolS]

Interesting @DizzyGirls. Completely opposite to how it initially effected my daughter. Also, the very frequent urination only lasted for the first two doses. After that she went back to her normal fairly frequent urination. I also gave the doses with sodium bicarbonate, so that might have mitigated some of the salt wasting effect. 

She stopped taking the Diamox two days ago and things haven't dropped back to anywhere near as bad as they were prior to her first dose.  The pressure release seems to have been important and positive. In this case, anyway, where the POTS flare was brought on by a cold/virus. That virus seems to have caused an intracranial pressure build up (maybe neuroinflammation?), which triggered the flare.

Having said that, she is nowhere near as good as she was after the miraculous first two doses. Really thought we may have found the miracle cure for her. Stupid me! Nothing's ever that easy. Headache is back but the fatigue is much less than with the Diamox. I feel like it's going to be something that's nice to have in the arsenal for really critical times but not necessarily something she should use every day. Or possibly very low dose, like 1/4 tablet a couple times a week to clear out any pressure that might be starting to build. Also interesting diagnostically as clearly there was intracranial pressure build up happening and that was a POTS trigger.. 

[DizzyGirls]

Yes, very interesting!  I always find it amazing what actually helps POTS issues!  Sometimes it will help one person, but not another.  I agree with you that it would be a very good thing to have in the arsenal for very critical times.  My daughter has had to have 3 lumbar punctures to release her pressure.  It's sort of random how and when it occurs, so we'll be glad that it's not flaring right now.  Hope your daughter can turn around on her own.  Those intracranial headaches are horrible! 

[CarolS]

Wow.  So your daughter actually has an IH diagnosis and her doctor agrees this is a cause of her POTS? The two doctors we've spoken to have said it would more likely be hypoperfusion and wouldn't entertain my notion that IH is involved. Must be so hard for your daughter to have to have lumbar punctures therapeutically, but also good to know you have a solution when things get really bad.  If you don't mind me asking, how long does the pressure relief last after a puncture? Have they considered putting in some kind of a stent to keep the pressure down?

[Conrad_hemsley]

@CarolS, have been reading this topic, thanks so much for all the info you provide.

i too have POTS and (suspected but pretty sure) intracranial hypertension. This theory about the brain lowering blood volume because of the hypertension sounds very interesting.

just one question: did the lymph drainage you describe help relieving the intracranial hypertension or did it just help other symptoms?

[CarolS]

@Conrad_hemsley Glad you're finding some of this helpful. I have no idea if the Perrin Technique osteopathy (the lymph drainage thing) actually relieved IH because my daughter's intracranial pressure has never been measured. I just know that over the course of a year of the therapy she has gradually improved (with some dips here and there) across the board, including OI/PoTS. As the therapy is aimed at removing lymphatic blockage, which would reduce IP,  I'm assuming it did that to some extent. 

This is a really good article about the Perrin Technique. It was what convinced me to look into it more seriously. When I first heard about it I thought it sounded like nonsense, but the more I thought about it the more it seemed to fit with what I was observing. Interestingly, Perrin's theory about lymphatics in the brain, which he's been using as the basis of his treatment for the last 20 years, was finally proven in 2017. Before that nobody thought the brain had a lymphatic system at all. https://www.healthrising.org/blog/2018/03/25/toxic-brains-frozen-spines-and-the-perrin-point-ray-perrin-me-cfs-and-fibromyalgia/

[DizzyGirls]

Hi CarolS - The IH is most likely just a "side note" along with their other issues (could also be due to her cervical issues and spinal fusion).  Both of my girls have POTS that stems from their EDS.  My oldest has migraines, vertigo, and newly added seizures.  The seizures are non-epileptic and are most likely due to her POTS not being well-managed.  My youngest is having the same problem with the seizures and she has vertigo, too.  The seizures are most likely as a result of a switch from propranolol (a non-selective beta blocker) to metorprolol (a cardiac blocker).  I think they were benefiting from the non-selective aspect of the propranolol, but it just stopped working. 

[Charlotte1]

@CarolS, after being absent from Dinet for a long time, I'm back on searching for Diamox information due to head pressure/pain stemming from what I presume is increased cranial pressure caused by humidity, stress, certain neck movements.... Thanks so much for detailing your daughters history. I will look into the Perrin technique although likely there is nobody in my city doing that.
My symptoms are/were very similar to your daughters although my issues might be related to my hypermobility. Like your daughter, after years (3-4?) of never getting any communicable illnesses like colds or flus, as my ME/CFS continued to improve, strangely, I started to catch the seasonal colds/flus that were going around. I thought that a fair trade in illnesses but the intracranial pressure never went away when the other symptoms diminished (through decreasing carbs and having regular cranial sacrum therapy- maybe its similar to the Perrin ?).
Did/does your daughter have trouble lying flat? Ever since ME/CFS began over 7 yrs  ago,  I've never been able to lay flat very long without it leading to occipital pain and/or a 'fullness'/pressure in the entire skull.  But If I am able to stand up in time, the headache will often go away before the brain fog/cognitive issues & dizziness sets in...I now sleep reclined in a hospital bed which can help avoid morning symptoms. I've read the Driscoll Theory years ago and have always thought IIH is likely the trigger of my issues and would love to try Diamox but don't have a dr. that will prescribe for me. Even if I did find Diamox on line,  how will I get my CO2blood levels checked without a dr script?

How is your daughter doing now?

@DizzyGirls I am very hypermobile with many symptoms of EDS  such as those of people with ME/CFS so your daughters' health journey interests me. Do they have a diagnosis of EDS? If so, Diana Driscoll strongly suggests that lumbar punctures are dangerous for those with EDS (although I've no idea if that's true).
How do you go about having one ordered for your girls?

[CarolS]

Hi @Charlotte1 I don't come on here much anymore either, but I happened to pop on tonight and saw your post. So much has changed since I posted on this thread back in May. Once I was able to get daughter out of her bad crash by using Diamox, she started improving again. Improvement has kept on going and now she is actually back in full time education with almost no signs of ME. She still has POTS, but it is really well controlled by 7.5 mg Ivabradine twice a day, licorice root powder+salt dissolved in coconut or other plant milk every morning, Swanson timed release 22%aescin horse chestnut tablets (have tried other horse chestnut and only these do the trick for vasoconstriction), and salt tablets and lots of water each day. I actually cannot believe how functional she is now. She's managing to wake at 7am for school, walk across town to and from bus station to school, be upright in school all day, etc. There seems to be no limit now. I don't want to jinx it and I know it could just be a remission, but I'm feeling optimistic. I've kept a diary of what's been happening with my daughter since she got ill and this time last year she was in so much pain and had no energy at all. Loads of post-exertional malaise. Truly debilitated. It seems hard to believe she's come so far.

If you're interested in the Perrin technique but don't have a practitioner near you, you could possibly order his book from Amazon and pass it to an osteopath near you and see if they'd be open to trying the technique or at least getting the gist of it. I don;t think its very different than what they might do anyway for lymphatic drainage and cranio sacral. You have to really commit to it, I think. We went for about a year. First 12 weeks its weekly then goes down to every two weeks, every month etc. I think taking a year off from school to rest and recover and the manual therapy were really helpful. 

My daughter has hypermobility in both her knees and occasionally hips, but nowhere else really. The hypermobility flares when everything else--POTS, pain, ME--flares so it's a bit of a chicken and egg thing. I'm not sure if she had trouble lying flat. She rarely did lie flat. She had a foam wedge pillow and also one of those U shaped body pillows that she lived in when she was at her worst so was never really in a fully flat position. 

As far as getting your hands on Diamox, it's used for altitude sickness primarily. I ordered it online as if I was ordering it for myself for that purpose. The online pharmacy here in the UK had questions I had to answer but they were very straightforward. As for the CO2, I guess I wasn't too worried as I was only going for a short trial. If it had been something that I felt would have helped long term I would have had to get medical guidance. In our case it was useful as a short blast therapy to get her out of a crash. It was a case of diminishing returns and the start of side effects after about 4 days and so I just stopped it. Haven;t had to use it again, but I'm glad I have some in a drawer. 

[Charlotte1]

@CarolS   Thanks for you reply. I'm glad your daughter is back to school, having lots of energy to do 'normal' things! It's wonderful when that can be experienced again.
I was in 'remission' for a few years, having only a few occasional days in a row where I felt symptoms but they always went away when I rested and then I was able live life normally again without the terrible PEM and cognitive issues always accompanied with headaches/pressure. For whatever reason, I'm back in a flare up and thats why I'm looking into the Diamox.

I contacted a doctor I've seen once if he'd let me trial some Diamox and also asked about getting my CO2 levels checked beforehand....haven't heard the answer on that yet.If he won't prescribe it, I will look for an on-line pharmacy that doesn't require a prescription..do you mind telling me who you went through for the Diamox? Knowing it made your daughter relapse does make me nervous though....

After watching a 80 minute interview showcasing the Perrin technique, I contacted a local osteopath today who said that the cranial lymph drainage techniques that have been popularized are all quite similar and although she is aware of the Perrin method, she said his method is basically what they're already taught in school. It's just that Perrin, (like John Upledger with cranial-sacral therapy),  'call it their own' by making slight changes. Since there is nobody doing 'Perrin' specifically, I'm booked to start my 1st session in a few weeks and the 2nd is a week later.  Time will tell...

 

[CarolS]

@Charlotte1 I wonder what made you relapse? I feel so nervous about my daughter relapsing. This thing is so mysterious. Just to clarify, my daughter didn't relapse using Diamox. She'd been gradually improving in health, which meant her immune system was getting back to normal. That allowed her to catch her first cold in 2 years. The cold caused a massive relapse and the Diamox popped her back out of it. After 4 days of Diamox it didn't have any further benefits for her. She hasn't needed it since. I feel like it's actually most interesting diagnostically. Nobody would agree that she may have intracranial hypertension but if a drug designed to lower intracranial pressure can vastly, and almost instantly, relieve symptoms, I feel that proves there was some pressure going on. Interestingly, Jen Brea, who made the film UNREST, describes herself going back and forth from Intracranial hypertension to hypotension. Like the body overcompensating for one and ending up in the other state over and over again. Jen has had CSF leaks which would explain this. She posted the differences she feels between the two on twitter if you want to find it. 

As far as CO2 buildup, can't you just take a bit of baking soda in water every morning as a precaution? I looked into the blood testing in the UK and it didn't seem to be a very simple test or something regularly done over here. Even privately I struggled to find someone to test. The good thing is that, at least in our case, it was very clear immediately that Diamox was helping. I don't feel like it's one of those "give it a chance to get going" meds. Either it will help you very quickly or it won't be right for you. 

I wonder how well the Perrin technique stuff would "hold" if you have a high degree of hypermobility. If your spinal position or neck is corrected by an osteopath but you're hypermobile it will likely shift back very easily, won't it? Would be good to do lymphatic drainage to get fluid out of the head but if the neck shifts again I guess things could build back up quite easily. I hope you find it useful. Report back and let us know. 

I'm pretty sure the pharmacy I ordered from in the UK only delivers in the UK. This is it. Very reliable--https://www.doctorfox.co.uk/altitude-sickness/

I don't know if you're familiar with the ME/CFS forum Phoenix Rising, but they have an active thread about online pharmacies--which are reliable, user experiences, etc. https://forums.phoenixrising.me/threads/tips-for-finding-reliable-and-trustworthy-prescription-free-online-pharmacies.8113/    

 

 

[Charlotte1]

Thanks for you reply CarolS. You offer so much valuable information! I"m not doing so well lately- lots of back pain from sleeping upright allows me only a few  hours of sleep. Lying flat relieves the pain somewhat but then the head pressure and pain starts there! blah blah blah...
I planned to read the pharmacy post (thanks for including that link)  but scrolling is rough on me. I've posted for assistance on there.
I will get back to you with an update when I have some info you might find useful/interesting that may pertain to your daughter. Please don't worry about her relapsing... many people don't . In my case, I'm not sure what the trigger was but possibly golfing because of feeling so well, caused my weak upper limb to be in wonky positions when I"m not even aware of it. My  elbows and shoulders are my most hypermobile joints and it affects head pain for sure, but we're just now seeing it may be associated to blocking spinal/lymph fluid in upper spine and brain causing the skull bones to shift (can visibly observe a lumpy head) and then the cascade of symptoms starts.
Hard to tell if that's the actual  cause because of course, daily mental stress on top of the physical stressors just mentioned, cannot be downplayed.
Thanks again.

[DizzyGirls]

Hi @Charlotte1 - I've been away for a few weeks and just saw your question.  So sorry I've been slow!  Yes, both of my daughters have a diagnosis of EDS from Dr. Jaradeh at Stanford's Autonomic Clinic.  That was 2015.  A lot has happened in the past few weeks, let alone past few months.  Found out that my oldest, the one with the IIH, has a tethered spinal cord (again).  We were wondering if she was going to have to get another lumbar puncture, but neurosurgeon ordered complete spinal MRI and found the tethered cord.  The reason for the constant migraines.  To answer your question about lumbar punctures, the doctor/specialist just has to order it just as he would an MRI or the like.  I hope you are doing better!

[Charlotte1]

Hi @DizzyGirls. Thanks for that info. Sorry to hear things are still challenging at your end. Your daughters are so fortunate to have a persistent and knowledgeable mamma. Kudos to you! Things here haven't changed. I continue to often wake with occipital headaches and lots of pressure in the skull. My Physiotherapist almost always finds my C-spine is out of alignment when I see him on pain days and he blames hypermobility which he says then messes with the cerebral fluid flow causing the ME/CFS symptoms. Can't find someone who specifically does the Perrin technique in my area so went to an osteopath but her gentle manipulation caused my shoulder to dislocate which then pulls on my neck and here we go again...more pain in head/neck pain by evening. Now waiting to get in with a therapist who specializing in cranial sacral massage and I'll insist she work only  on my cranium! 

I haven't order Diamox yet b/c I don't feel comfortable leaving a credit card # with these on-line foreign pharmacies. One in India wants $76.00  to send to Canada (I might only use a few to trial) yet the money isn't the issue, it's the lack of trust of these pharmacies with my card! Not sure what to do about that...

I don't think I can find a dr to order an MRI but regardless, I remember Diana Driscoll saying that if you suspect EDS, as is my situation, never to allow one to be done. Yet your daughter gets them done and she's been dx'd with EDS! I'll have to research more how to proceed with these sub--occipital headaches because I'd love to be free of them (or at least be able to rely on quick treatment) by next summer for my daughters wedding.
All the best to you and your girls.

[Julia Panther]

I know this is an old thread, but an interesting one...  My daughter has heds and suspected pots and mast cell activation syndrome, which appears to give her ME symptoms (rather than the often mentioned hives and flushing, which actually not everyone with mcas has!)  I need to reread the Driscoll stuff (have it somewhere) but I seem to remember when I read it before it suggested mast cell activation might cause the intracranial hypertension issue?  Or maybe I was just linking the two things in my own head?  I can see why hypermobility alone could cause issues with intracerebral drainage etc, I just wondered if any of you had looked into mcas as a cause of intracranial hypertension and hence POTS?  Also wanted to say thank you for ideas re vagal nerve stimulation and Perrin technique...

[fabrizio]

Hello everyone.  I want to tell you about my experience as it seems particular even if in reality it could have meaning for a lot of people with POTS or IIH (idiopathic intracranial hypertension).

I suffer from IIH, due to a cerebral venous malformation.  specifically I was born without the right transverse venous sinus (which is the breast that drains the most blood and CSF).

As a child I have always suffered from migraines, without ever having had the need to consult a specialist.  about two years ago I started having symptoms attributable to central nervous system problems (dizziness, poor mental clarity, tremors, awkward movement and feeling of fainting), then I consulted a specialist, I underwent a brain and vein MRI of the brain, being diagnosed with IIH (pseudotumor cerebri).  I have not had a lumbar puncture for blood pressure because I have all the signs and symptoms of IIH.

I am normally bradycardic if I am at rest. last year I began to notice that my heart rate is often high when standing, and I notice that the symptoms I mentioned earlier when they are more prominent are associated with a higher heart rate in standing position.

I therefore consult the cardiologists who first implant me a holter ecg and then a loop recorder under the skin which confirms the presence of orthostatic tachycardia (generally on average it is 115).  I understood that it was a form of dysautonomia but I didn't think about POTS.  I then consult my neurologist who tells me that my POTS is caused by my IIH explaining to me: "IIH involves a lower perfusion of oxygen in the brain which is aggravated with standing upright and therefore with gravity, leading to the aforementioned symptoms (dizziness etc. etc) so the heart to compensate and not make you faint has no other option than to increase the heart rate.Now I'm increasing the Diamox, which I tolerate very little, and it seems that the tachycardias are reducing.