CarolS

@pistol From what I can understand from the thread, it seems that some people have a total lack of wrinkling no matter how long their fingers are immersed and that's a sign of small fibre/autonomic neuropathy, where the excessive wrinkling may be a sign of excessive sympathetic activation. And then some people on the thread have wrinkled fingertips all the time--wet or dry--and perhaps that's a sign of hypovolemia or destruction of collagen in something like EDS.

My experience is that doctors look at me like I'm crazy when I've mentioned it regarding my daughter, but it seems like fingertips have many stories to tell!

Also, I wonder if any of you who have the wrinkling issue also suffer from cold hands?

My daughter who has ME and POTS has had excessive finger wrinkling in water (only needs to be in water for a few seconds) and sometimes without water. She's had this issue for much longer than she's had POTS or ME in a significant way. It's the one symptom that I tend to avoid talking to doctors about as it sounds crazy! The other day I came across this big thread on it on Phoenix Rising. Pretty interesting--

https://forums.phoenixrising.me/threads/the-finger-wrinkling-test-can-be-used-as-a-screening-test-before-tilt-table-testing.77607/

Licorice has very similar actions to florinef but without the negative side effects.  A tsp pure ground licorice root dissolved in a cup of milk or plant milk every morning along with a little (1/8tsp, or so) salt has worked really well for my daughter. Not good if you have high bp but otherwise it might be worth a try if approved by your doctor? 

18 hours ago, bombsh3ll said:

I personally have never experienced remission other than for 24 hours after a long flight, twice. I

I wonder if you've been able to give yourself any very prolonged periods of rest. I took my daughter out of school for a year and she spent most of that time in bed. If there was any chance of spontaneous healing I would think rest would be absolutely essential. Having said that, there's a huge chance that she never had a CSF leak. Like you, we're in the UK, so testing is something you have to beg for and I decided to go in different directions. I think her clarinet is going to stay packed away indefinitely, though! 

@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/    

Congratulations @bombsh3ll! What a relief to know there is treatment out there and to finally know what you're treating. Keep at it. The NHS should be for everyone, not just people with the "right" illnesses.

My daughter's acute phase of ME and POTS started after a weekend wind orchestra residential where she played clarinet for hours and hours. She was already under the weather with an upper respiratory infection, had her period and then subjected herself to what is essentially hours and hours of valsalva. I've been wondering for a while if this might have caused a leak, but then she hasn't had any nausea or any GI symptoms and traditional POTS treatment (Ivabradine in her case) has made a big difference. CSF leaks do self repair sometimes and my daughter has had vast improvement over the last 4 months. Another reason I wonder about this. She's 17 and I imagine self healing is much more likely at that age than it might be for older patients. 

Wishing you very good luck going forwards.xx

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. 

When all the most recent POTS research seems to be showing structural or autoimmune causes, a company where half the staff are psychologists doesn't fill me with much confidence.

I used Swanson 90% Honokiol magnolia bark. I found it helped me get to sleep in quite a nice gentle way. It stopped working after only a couple nights, though. IIf I wait a long time between uses I can get it to give me another night or two of effectiveness, I don't have dysautonomia. My daughter with POTS and ME tried it, as she has very stubborn insomnia, and it did absolutely nothing for her.

This sounds like Post-Exertional Malaise (PEM) which is the hallmark symptom of ME/CFS.

From Wikipedia: "PEM can be described as "a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity."

@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/

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?

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.. 

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

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!

Where are you in the UK? Have you looked at the list of doctors on the POTS UK site? My daughter has seen Dr. Jamie Fulton at Derriford in Plymouth. We liked him a lot. He's just come back from a 4 month leave, so I imagine he's quite backlogged. He's NHS and doesn't do private as far as I know. 

Hi Lee. Have you been on the POTS UK website? They have a list of doctors on there who are POTS and dysautonomia literate and aware. I wouldn't accept a referral to just any cardiologist. Ask for one from their list. The trouble is that cardios who aren't particularly knowledgeable about dysautonomia can think you're perfectly fine according to their tests. You end up in a worse place than before seeing them. Sounds like you're in such a rough patch right now.  Wishing you lots of luck with getting better treatment.

Someone over on an ME/CFS forum posted a link to this paper. My understanding of it is limited, but perhaps there are some here with more of a science background who can make more sense of it. Looks like these are relatively preliminary results. 

The important bits:

 "...identified proconvertase furin as the most robust biomarker signature for POTS...Patients with POTS have lower plasma level of proconvertase furin compared with individuals with normal postural hemodynamic response. This finding suggests the presence of a specific autoimmune trait with disruption of immune peripheral tolerance in this hitherto unexplained condition."

https://www.frontiersin.org/articles/10.3389/fnins.2019.00301/full?fbclid=IwAR2VqN00pB55FYWEQ4Ga11svDwipyTuBzQuVCxHKBhF00zUeVvCTY7usHos

Liquorice root powder has similar actions to Florinef. I know it's not an ideal solution and it may not work for everyone, but if times got really desperate it would be worth a try. Unlike Florinef, liquorice is easy to stop taking. No tapering off needed. It's worked really well for my daughter. She's been on it for about 9 months now as we've been trying to avoid Florinef if we could. 

Wonderful news, @Pistol! Great to hear!! Wish this was available as an option in the UK. 

I agree with @Pistol. They'll have wheelchairs there. My daughter is less disabled than you, from the sounds of it, but we always grab a wheelchair if we're somewhere that offers and will involve extensive walking. Took one in Ikea the other day. A huge percentage of wheelchair users have use of their legs. My daughter felt the same as you initially--worried about people seeing her get in and out--but she doesn't care anymore. And nobody has EVER commented on it. It's allowed her to join in so many family activities that would have been a nightmare without a chair. And it means she won't spend days afterward in post-exertional pain. If someone comments you can either tell them to **** off or say you have a heart condition. 

Sounds quite interesting but the statement is an advertisement,  so I'm not convinced. Medical devices need almost nothing to be cleared by the FDA. Not at all like approval for drugs. There's a really good (and scary!) documentary about this on Netflix called The Bleeding Edge. Very worth a watch. Medical devices can be cleared by being vaguely similar to another medical device (which may have been cleared in the same way etc. etc.) and this can lead to some terrible devices being cleared. I'm not saying this is necessarily one of those terrible devices, but it's quite expensive and I'd want to see some science before considering it.

I also wondered whether the effect--if there is one--is only a temporary thing or if it could lead to permanent changes. I assume temporary which makes it somewhat impractical.

I agree that if it works it would be interesting to try for PoTS.

So, @Pistol your blood pressure rises on standing then, right? Or am I misunderstanding? I'm in the UK and my daughter was given virtually no testing. I'm not sure we needed any, though. Heartrate skyrockets on standing. Blood pressure generally low with no change on standing. I think based on the doctor's experience he thought trying Ivabradine (plus blood volume increase with salt and water )and seeing how it went was as good as running a whole load of tests. In our case this was right. Daughter also has ME and the autonomic testing can be fairly gruelling from what I've heard. In daughter's case we got lucky with the first med tried. 

@MeganMN Your case sounds quite complex. I hope you find a way to get to Mayo soon. Sending good wishes your way. If you want to try and figure out some of what might be going on there are a whole load of good articles in the 'Information Resources' section of this site. Maybe something will click with what's going on with you. 

@MeganMN When a "normal" person stands up, their autonomic nervous system tells the vessels in the legs to constrict so all the blood doesn't end up pulled down to the feet and legs with gravity. If you have dysautonomia/POTS, the vessels aren't getting the message to constrict. So, you stand up, blood drops to the lower half of your body and the heart beats faster and faster trying to keep blood going to the heart and the brain where its vitally necessary. The heart usually can't achieve this no matter how hard it pumps, but it tries and tries. You get dizzy. Some people faint because fainting is the body's way of getting you horizontal and getting blood back to the head and heart. Fainting is the body saving itself from death! 

So, if you take a drug that lowers heart rate but you don't take any other measures then you still have the blood going to the lower half of the body but now the heart isn't even beating hard to keep it going to the head and heart. You'll likely feel worse. You can take a drug like midodrine for vasoconstriction so that when you use the beta blocker to take the HR down you're also helping the blood to stay up where it needs to be by constricting the vessels. Another way to help is to increase blood volume (usually done by drinking at least 2L of water a day and very generous amounts of salt or salt tablets or by taking Florinef) which then means the whole system has more fluid and when blood falls to the feet, there's still enough to go around, so to speak.