I'd mentioned over on the 'Welcome back Cort' thread that this place and Health Rising were instrumental in my daughter's recovery. A couple people wanted to know more so I'm starting a thread here rather than clogging that one up. This is long! Sorry.
I feel like I probably detailed her story somewhere on here a while back. She started getting sick around age 14/15. Repeated sore throats, extreme fatigue, stomach pain, worsening headaches, etc etc. She was in a woodwind orchestra so was playing a lot of clarinet and she would get very faint if she had to play standing up. Clarinet is basically doing the valsalva manoeuvre so that makes sense now. After going on a residential weekend with the orchestra where she was playing for hours, staying up late, getting yet another sore throat and also getting her period all at once something broke and she started getting very ill. Over the next months she had worsening of all symptoms and started getting PEM. Headaches were particularly brutal. Something new every day and I had no idea what was going on. Much more but you all know about that side of it.
Couple things that were on our side. One was that she was young when she first got really sick. I think young bodies have the potential to bounce back faster if given the opportunity. Second "lucky" break was that UNREST came out right around the time she started getting symptom after symptom. I remember vividly lying in my bed watching it with her just because I'd heard it was a good film. At the end I turned to her and said, "Well, just be glad you don't have THAT." And, ummm. Yeah. Watching UNREST speeded up my realisation that she had ME possibly by years. This was lucky because it meant I didn't push her to keep attending school so she was resting from early on. Also, seeing such severe cases in the film scared the crap out of me and I was hellbent on getting her out of this mess. But--and I know this isn't what many want to hear--probably starting to treat in various ways within a few months of the onset of serious illness made a big difference. But maybe not.
After realising that her GP and paediatric consultants were going to be useless (Got a "CFS" diagnosis and shunted over to Medically Unexplained Symptoms Clinic where she was offered some melatonin (did nothing) and OT (refused it) and nothing else) I started reading. Lots of Health Rising and Phoenix Rising.
I had a limited budget and she was a kid so I was searching for things that weren't crazy expensive and also things that might have big results with low chance of side effects. I saw lots of people getting extensive and very expensive tests. While the results were interesting, most of the people getting them were still sick. So I discounted that as not being value for money for us. Through the whole journey J has had very few tests beyond the basic. Also discounted long courses of antivirals because they were going to be hard to get in the UK and also risked side effects with a fairly small chance of resolving things. Rather than take you through the cupboard full of failed remedies I'll list what I think worked. This took years to work, though. She was moderate/severe/mostly bedbound for over two years which I know is a drop in the ocean compared to some of you, but I think it would have been much longer and she would still be home today if some of the below hadn't worked. And before you get your hopes up--none of this stuff is revolutionary. It's all been around. And it may only be the right combination of things for this one individiual. But anyway, things that helped in her particular case:
1)
1tsp liquorice root powder + 1/8 tsp salt dissolved in a big glass of plant milk daily. There's an Italian doctor with ME who basically cured himself with this. He wrote a paper on it.
@Hip probably knows the paper I'm talking about. It's on here somewhere. We started this before I suspected POTS but it would have acted very similar to first line POTS treatment as liquorice acts similar to fludrocortisone and salt also helps retain fluids. This wasn't a cure for us but I could see a small difference in energy and some improvement in headache and it was the first thing to give a glimmer of hope.
2)
Perrin Technique osteopathy for over a year. When I first heard about this treatment I thought it was absurd and scummy and totally discounted it. It made no sense to me. But then I read this article (
https://www.healthrising.org/blog/2...rin-point-ray-perrin-me-cfs-and-fibromyalgia/) over at Health rising and listened to the embedded interview with Perrin and it started to make some sense. It connected with what I was seeing in my daughter. It's very frustrating to me that it gets lumped in with Lightning Process which it does not resemble in any way. There is no psychological component. It isn't secretive or crazy expensive. Another lucky break was that there happened to be a Perrin trained practitioner 10 minutes from us. Very lucky as we live fairly rural and there isn't another for many many miles. Again, it was something that could have big benefit with slim to no chance of side effects so it seemed worth trying.
I'm sure I've written about it on here elsewhere so I'll just hit a couple things that stick with me about it.
--- It's slow and you have to be patient. Weekly for the first at least 12 weeks. I've seen people go a few times and decide it isn't going to work. Maybe it wouldn't for them, but we stuck with it for a long time. Weekly then bi-weekly, then monthly etc.
---Part of why we stayed with it is because of the intense reaction to the first couple treatments. Daughter spiked a fever and got really nauseous. It's largely lymphatic drainage so something toxic must have been in her lymph to cause that reaction. Headaches gradually improved, as well. It wasn't a straight line of improvement, though. Many ups and downs.
---
@Hip mentioned on the other thread that the breast massage aspect was important and he remembered correctly! Daughter's practitioner was male and he didn't feel comfortable doing this on her as she was a teenage girl. So, after a few months of working with her in other ways, he taught her to do that herself. It is so ridiculously gentle and so subtle that a non-ME person wouldn't even consider it as therapy. It's basically four downward strokes of the upper breast on each side. Most people could do 100 strokes and think it was nothing. Daughter would do that in the shower and without fail the next day she would crash. It was unbelievable to me. She would have to strategise when to do it so she didn't do it if she had anything going on the next day. It was supposed to be daily but she managed it a few times a week. And what convinced me about Perrin was that her ability to do the breast massage without crashing directly correlated with her improvement in general. It felt like she'd gradually released all the "stuff' and had come out the other side. Shortly after that we stopped Perrin because we all agreed she had gotten what she could from it.
---Her osteopath said that in all his Perrin patients sleep was always the last thing to improve/regulate. He was right about that.
---My sense is that the manual therapy got her body to a place where it could respond to other therapies and have them really stick. I think it was important for her. Dr. Peter Rowe, the well known POTS specialist, has also talked about using manual therapies in his practice.
3)
POTS Diagnosis and Treatment. This seems obvious but I still encounter many people with ME who have never looked into this. Paediatrician who diagnosed my daughter with CFS never bothered to check for it. When I contacted her to say I'd done a home test (just using a hone app heart rate after 10 mins lying down then for 10 mins standing) and think she has POTS doctor said it was just another syndrome like CFS and not worth pursuing. Aaarrghhhhh!!! Had I listened, daughter would still be bedbound. After getting a referral to an autonomic consultant daughter has ended up on Ivabradine, Midodrine and Salt tablets. Plus 2 litres of water/day. Started Ivabradine on its own but that actually made things worse because it slowed heart rate without increasing vasoconstriction. Initially I solved this by adding Swanson timed release Horsechestnut capsules (had to be this exact thing) which provided good vasoconstriction. eventually this was replaced with midodrine. Her supine heart rate is approx 65. Standing up to 160 without meds and sometimes even with meds. But treating POTS was a real game changer.
4)
Palmitoylethanolamide(PEA). Another thing that came from Health Rising! It seemed pretty clear that neuroinflammation was an underlying factor in many ME and POTS symptoms. PEA reduces neuroinflammation and has been shown to reduce pain in fibromyalgia. Pain of all kinds, particularly spinal, were a big issue for my daughter. She couldn't sit at a desk for any length of time without the spinal pain getting too intense. PEA is yet another thing that has very slim chance of side effects but a good chance of doing some good. I bought Normast brand ultramicronised PEA from an Italian pharmacy. I can't say that it's super cheap but it seemed to have a good track record and seemed worth trying. Like Perrin, though, it isn't something that works immediately. It's subtle, so I have a feeling people give up on it. After two weeks of taking it I noticed daughter sitting at her desk drawing. She was there for over an hour without complaining of pain. She didn't notice this change, I did. So we stuck with it. It's something you build up then taper off. So she did 600mg am and 600pm for around 10 weeks then tapered down. Really improved pain for her. It also turned out to be useful for POTS flares after she was more recovered, It seemed to bring her down from those.
5) After she was tolerating the breast massage and on POTS meds and hoping to get back into education the thing that made me really hopeful that she was improving was that she got a "normal" cold. She hadn't been normal sick for two years at that point. So that was great, but it triggered a major relapse of headaches and POTS. Actual fainting POTS that time. Some time prior I'd been reading about intracranial pressure as a possible cause of POTS and so I'd ordered some
Diamox (acetazolamide) online but never gave it to daughter. But I decided to try it. Just a quarter dose. Of all the things we've tried this was the most immediate, obvious, almost miraculous thing. Daughter said she could feel "crackling" in her head within about 20 minutes. Lots of urination and a lightening of symptoms within an hour. Some hours later she had a second dose and I could actually hear her neck making cracking noises. I think nobody believes this but it was true! It improved the relapse dramatically and brought her back to baseline. Took it for a couple more days until she started to get some side effects. Unfortunately, it never worked like that again. I also have no idea if it might have helped earlier in her illness by releasing intracranial pressure. It's almost doing the same thing as Perrin Technique but chemically instead of manually.
6)
Continuous combination birth control pills. I know everyone reacts differently to this and daughter has experimented with different brands but her cycle was exacerbating every bad symptom so stopping periods was a huge help.
6) This is not a big curative thing and may be specific to my daughter, but the only thing that would get her to sleep when she was really bad was
diphenhydramine. Having said that, she never wanted to try any of the big gun addictive things, so they could have helped as well.
7) POTS doctor had suggested she might have MCAS but sodium cromoglicate didn't do anything for her and, strangely, Ranitidine made her very groggy. But
Famotidine seems to be doing something good for her so she's stuck with that as an H2 receptor blocker and occasionally adds an OTC H1 blocker, as well.
So, flash forward and my daughter is 21 now. She is at university in London. Living with friends. Miraculously well enough to have a pretty normal life. Health has been up and down over those years but she no longer meets the parameters for ME. No PEM and good restorative sleep for the most part. She still has POTS and is still on the above medications for that. She's just finished her second year and has had to take time off for POTS flares now and again but she's been able to keep up with uni work and has a part time job in a pub working lots of hours in a row on her feet right now. She's had Covid twice and recovered in the same way as her peers. Remembering how she was a few years back it feels like a miracle that we're where we are. If any of this helps even one person then it was worth writing it all down!
