Sarah Tee

I saw this BBC program a while ago on Australian tv and was very impressed by the doctors involved and touched by the patient stories. At the same time it made me feel sad and angry because the care the average person receives is so far below what is shown. Someone has put it up on the website Dailymotion (a more basic version of YouTube). If you go to the website and search "diagnosis detective se1", four episodes will come up. (Only one series was made.) It is presented by Michael Mosley, but don't be put off by that. It is a much higher standard than his other programs and he only plays a minor part in the stories. The focus is on the patients and specialists. Without giving anything away, several of the patients are investigated for or end up having dysautonomia issues. You may also spot some of the other diagnoses before they are revealed in the program. It is a little sad, but most of the people get a resolution of some sort. Edit: Realised I forgot to say what it’s called – “The Diagnosis Detectives”.

@MikeO, I'm sorry to hear that. You would expect a faint team to cover all types and causes of fainting. Also, anyone medical should be interested and engaged when relevant new information comes up, not annoyed! I hope your PCP will be more helpful.

So, I had a long talk to my endocrinologist about this situation. She has tested me pretty thoroughly in the past to see whether there was anything endocrine going on (before I got my dysautonomia diagnosis) and has treated me for 20 years for a minor unconnected endocrine condition. So she knows me pretty well and we have a good relationship. She agreed that as the steroids produced a lingering positive effect it was worth considering an inflammatory/auto-immune angle. Her suggestion was to see a rheumatologist. She also said that if my condition does have an auto-immune component, I would be much better off getting that identified and then taking a specific medication for that condition (if one is available) than taking steroids. She explained that often there are medications that are more specific and have less long-terms risks than steroids. Her suggestion was to see a rheumatologist. I agree with her that this is a good idea but I am not sure I want to get on another medical merry-go-round. The wait to see a rheumatologist could be long, I will have to travel two hours plus for my initial in-person appointment, and I may strike someone who has no interest in investigating. And even if they investigate I suspect they won't find anything. Whatever it is is just not really making itself felt generally yet, or is too specific to dysautonomia to be tested for for another however many years until they get that sorted out. I was just looking through the reviews for rheumatologists in Melbourne and it was exhausting. I think I will go on Facebook and ask on the Australian dysautonomia support group. Can't quite remember why I started this post ... I think my point is that trying to find another specialist is exhausting and may be a waste of time but there is no way of knowing beforehand, which is annoying, and you all know this already! ... Oh, but I think I'll ask for Sjogren's blood testing, because I suspect my mum had Sjogren's and it's worth a try.

A Facebook support group that includes your new area can be a good source for local recommendations. I don’t use Facebook, so I had a family member join a support group and have a search and ask questions for me. Ended up being quite helpful for finding specialists. (The group also had a PDF list based on member recommendations that you could download after joining.)

Albumin infusion no. 2 happened on Friday. It was a long day – we left the front gate at 10.30am and got back at 5.30pm, no stops apart from quick toilet breaks. I am finding it takes about two days for me to recover from the trip to the hospital. Everyone else seems to find the chairs comfy, but I've tried a different way of sitting each time, plus lots of toilet trips and pacing up and down when I can (limited), but I always end up with horrible DOMS that evening and the next day. Not to mention being sweaty from being partially encased in vinyl. Anyway, the infusion did help me feel a little better, but I'm thinking that this is not going to work for me long term. It is good to know about; for example, should I get worse or catch a nasty bug, and when I have to have bowel surgery next year. I still think it is worth trying if no other treatments have worked for you and you have no contraindications for blood products. I've had no direct side effects, unlike with stimulants which improved my energy levels but caused nightmares and muscle pain, for instance.

There should be some helpful content at Dysautonomia International's Vimeo channel: https://vimeo.com/dysautonomia (The lectures aren't organised by topic or in playlists, unfortunately, so you have to page through them to find relevant ones.) You may have already seen this, but I find video content doesn't come up in searches very well so it's worth mentioning. I recently saw that Brigham and Women's Hospital has a clinic for connective tissue disorders inc. EDS, and it also has a specialist clinic for dysautonomia. I don't know whether the two clinics co-ordinate care for people with both, but you could enquire and see. Not anywhere near Pittsburgh, unfortunately.

I’ve come up with a low-tech workaround – cycling with one leg at a time, keeping the other leg bent at the knee and foot flat on the ground to give the support missing from my core muscles. Then I swap between legs every 20 moves or so. Not as smooth as cycling with a gadget, but seems to do the job. Another option is holding onto my PJ pants to take a bit of the weight so I can do both legs. Not very elegant! @Pistol, that is a good idea about physio. We have tried a few times with not much effect. A famous expert on my surgery (j-pouch bowel reconstruction) apparently tells his patients not to do strong abdominal exercises ever. Physio has helped me with lots of other things, just not my abdominals. Oh well. And I have to have more surgery soon so who knows what state they will be in after that!

There is something beneficial for me about mobilising my legs while lying flat when my OI gets bad - sitting and cycling wouldn't do it for me.

Has anyone tried supine cycling, either at physiotherapy or with your own pedal exercise gadget at home? I don't have a gadget, I just cycle my legs in the air while lying down, but I find it useful. I don't have very good core strength (had several abdominal surgeries in my 20s), so I can't keep it up for long. Was thinking of getting something like the Excy (search "Excy exercise bike" and it should come up), although a less-expensive option would be good. There is one model that can be used in bed and the other models can be used on the floor. I imagine you could use a much cheaper one providing you could stabilise it to use while lying down. The only problem might be adjusting the height. (I'm guessing cheaper ones wouldn't be adjustable.)

@Pistol, that's interesting. Maybe I have never actually been hypoglycemic and it was OI all the time, as I can't identify two distinct patterns and snacking doesn't really fix things. (I think it's the sitting down and resting while having the snack that creates the small improvement that I've noticed.) I'm glad to hear you've got this aspect under control with diet.

I had the same question for many years. As well as occasional episodes on standing/exerting myself, I also had "slumps" each day about an hour after eating breakfast and lunch. I wondered whether I had reactive hypoglycemia or whether my blood sugar was dysregulated somehow. My old GP (now sadly retired) gave me the same advice as MikeO has written above. I also purchased a basic blood glucose meter and checked my levels just to be sure. In my case, the levels were always in normal range or just near the lower end of normal. Having a carbohydrate snack helped a little but did not resolve my symptoms as it would have with actual low blood sugar. I think that orthostatic intolerance can feel a lot like low blood sugar, either when you are exerting yourself and your circulation can't keep up, or after meals when blood is diverted to the abdomen/bowel leaving the rest of the body a little low. I have plain old orthostatic intolerance, so when I have these episodes my BP and HR are normal. I have read people with POTS say that they sometimes have an episode like you describe even when their HR is normal. Having said all that, there is no harm in purchasing a basic meter and checking for yourself. And your GP/primary care doctor could order some blood tests to look into it too.

@MikeO, there’s a really good forum here that has threads on CGMs: https://www.diabetes.co.uk/forum/ I wonder whether two weeks is too short a time to get a handle on using a CGM properly (even though “technically” you don’t have to do anything, there are still things to factor in such as finger prick tests, recording meals and activity, and possible effects of lying certain ways in bed on the sensor).

That is a very difficult situation for you both. I first started having symptoms when I was 29, but they were mild to begin with, so I was able to keep working for quite a while. But over the years my symptoms gradually got worse, and I am now unable to work or do much of anything. My father is my main support person, taking me to appointments and helping me deal with paperwork and other things that brain fog makes hard. Is your daughter happy with her doctor? Although research into dysautonomia doesn't move very fast due to the lack of funding, there have been a few developments in medications and diagnosis in the last few years. Maybe it is time for a review of her situation or a second opinion if her doctor has perhaps not been keeping up with advances. Does she have the kind of symptoms that IV saline might help when she goes into a flare?

I would suggest putting in writing that you do not wish to apply for FMLA related to your husband and send it by registered post, or create some other proof of receipt such as copying in relevant staff members on an email or even sending a copy to your family lawyer (if you have one). Make sure the letter is very bald and clear. I am not familiar with the FMLA process, but it might also be appropriate to send that authority a registered letter saying the same thing. Plus, does the organisation have a help line? If you can get through, phone and tell them what's happening. This will create an official record to support your side of things. Also make sure to document every thing that happens. Sorry you are going through this hassle on top of everything else. P.S. I would also ask for a copy of the notes from the meeting, and if they misrepresent you, put it in writing and again lodge copies wherever you can.

@Bailee, I found these two resources helpful to see whether there was anything else for me to try: Lecture by Satish Raj on POTS medications: https://vimeo.com/486427306 List here of just about everything that has been tried for POTS: I wonder if your specialist would try you on IV saline given that you are still struggling despite your best efforts. Some doctors view it as a good bridging therapy to get people more active and allow them rebuild their strength and stamina, then slowly reduce the infusions, hopefully leaving them in a better place. Other doctors are concerned about the risks of having infusions and the complications of access for regular use. One more thought – you mentioned compression socks. Have you tried compression that covers the abdomen, e.g. tights, leggings or bike short style? I too have been working through a long list of interventions and medications and trying to exercise at night (when I often feel better). It is very hard when nothing really seems to be working.

@Wanderland, I’m sorry you didn’t get much help when you last tried. This lecture from Dysautonomia Int. might be helpful: https://vimeo.com/641527663

I haven’t got round to watching this lecture yet, so I’m not sure how relevant it will be, but just thought I’d mention it: https://www.youtube.com/watch?v=Cg1-iS59V4o It’s called “Sex hormones and dysautonomia”, presented by Dr Blitshteyn.

Thanks, @MikeO! I am honestly amazed that my specialist ordered it, and amazed that it worked. I am also a little dumbfounded that it only happened because I had seen it mentioned here and then chased down some references to its use in Canada and asked whether I could try it. My specialist had said that we were pretty much out of options if saline didn’t work. DINET to the rescue! He has ordered three more sessions, so watch this space.

@RecipeForDisaster, I don’t think I’ve had my serum albumin tested in recent times. I’ve been meaning to check through my records to see if it’s there but haven’t quite got round to it. Is yours on the high end of the normal range? If so, it is hopefully combining with all that nice saline and enabling it to stick around. I’m so glad your nausea is gone. I hope you can enjoy a few favourite meals/snacks! My specialist has ordered me three more sessions. Not sure whether they are to be weekly or fortnightly. The day unit at the hospital is a bit booked up pre-Christmas so there may be a wait, but that is okay. They have been very kind and accommodating so I know they will fit me in as soon as they possibly can.

@MikeO, I hope the Dexcom monitor gives you some useful information. I hear they can be very helpful.

I have a small update. I went in to my (sort of) local hospital for an albumin infusion yesterday (Thursday) at 12 noon. It took a while to fill in paperwork and get the IV in and I had to see a doctor and sign a consent form because albumin is a blood product. The infusion started about 1pm. The exact thing I received is called Albumex 4, a very pretty citrus yellow transparent liquid in a glass bottle. I had two bottles over two hours. (I think the bottles were 500mL each, but will have to double check that. Edit: Yes, that’s correct. I weigh about 80kg for reference.) I am not sure how my specialist decided on the dose; I will ask him when I see him. The fluid felt a little cold going in, so the nurse gave me a warmed blanket to wrap around my arm. I felt no other particular sensations and had no side effects. Towards the end of the first bottle, I started to feel a little better, but didn't want to "jinx it" or imagine anything. By the end of the first bottle, I was sure that I was feeling better. This feeling continued at the same level while I had the second bottle. The effect of the albumen was to improve all my nasty symptoms. Crushing fatigue, background nausea/lack of appetite, horrible drained feeling in face, brain fog, and facial pallor were all much improved. However, my physical energy levels did not return to normal. (I still experience normal energy levels a few nights a week when my symptoms go away at about 11pm. I also had a brief taste of normality during the day while taking steroids for an allergy a few months ago.) I went to bed early on Thursday night so I don't know whether I would have had one of my nighttime remissions. Today, I noticed I felt less horrible than usual on waking. I was able to stay upright all day. I was able to potter about comfortably, make a simple meal and clean the kitchen a bit, and do a couple of minutes of easy gardening. When I needed a rest, I sat down. (Usually I would need to lie down for half an hour several times a day and would struggle to do much of anything.) So I can say that it has temporarily fixed my orthostatic intolerance because standing was simply a bit tiring on my legs / lower back rather than making me feel presyncope. Yay! But I didn't feel like going for a walk or exercising. I applied my personal exercise test: squats. I was able to do 5 in a row (just). When I feel "normal", I can do 20. So I still had low energy and exercise intolerance and struggled a bit climbing the stairs to the upstairs bathroom. So, to summarise, I felt better but did not feel completely normal. We are now waiting to see how long the positive effect lasts. If it wears off quickly, then it's probably not worth my having regular infusions given the time to get to the hospital and back and the fact that going there in itself is a bit tiring. But if the benefit sticks around for longer, then maybe a weekly or (ideally) fortnightly infusion will be possible. It is now 10pm on Friday night. I will report back in a week and let you know what happens!

@MikeO I'm so glad to hear you are feeling some positive effects! I am going to give Mestinon another try after I've had my albumin infusion. (I was supposed to go today but I was a bit under the weather and had to change to Thursday.)

I think the medical term is "fasciculations" so that might help when checking medication side effects or looking through research or past posts. I have read that benign fasciculation can come come on after exercise (for anyone). Just trying to remember whether I've had it too, but I usually exercise lying down these days so that reduces the intensity.

Found another story about a Canadian person with POTS who is/was receiving albumin infusions: https://mystory.blood.ca/en/story/those-think-who-does-my-donation-really-help Same patient of Dr Siddiqi's who was interviewed in a news story for CBC: https://www.cbc.ca/news/canada/saskatchewan/katherine-kay-diagnosis-genetic-testing-1.4260019 Just adding it here for people who might be looking at this topic in the future. I have had to dig a lot to find anything about it.

Here is the study I was thinking of: https://link.springer.com/article/10.1007/s00246-015-1274-6 Full text: https://sci-hub.se/https://link.springer.com/article/10.1007/s00246-015-1274-6 (May not display properly unless viewed on desktop. Clicking/tapping "save" button below bird icon may allow download of PDF version.) It was adolescents and young adults.