Sarah Tee

@Neomorph, enjoy your winter! I do have airconditioning, thank goodness. And cool packs in the fridge. Plus a big fan!

Well, it went okay. He has ordered some blood tests and agreed to try me on plaquenil. Although he said “for three months” and from what I have read you really need to try it for six months to be sure. But I guess we’ll cross that bridge when we come to it! I doubt the blood tests will show anything. Whatever the antibodies are in OCHOS, they won’t be on current tests. And I don’t have any classic signs of rheumatological diseases. (Dr Novak believes that in one type of OCHOS, the type I have, antibodies are causing vasoconstriction in the cerebral arteries or arterioles.)

@Birdlady, I’ve been waking up with numb hands and lower arms too. Sometimes one, sometimes both. It started about six months ago. It wears off very quickly, as soon as I move my arms about, but it does seem odd. No prickling feeling like you usually get with pins and needles. At first I though I was lying on my hand, as I am a very awkward sleeper. But I don’t see how even I could lie on two hands! Did you mention it to your specialist?

I am suffering more from heat intolerance this year, and it’s only early summer. I am not sure whether I have gotten worse since last year, or whether it is the calcium channel blockers I’m taking at the moment. I might have to switch to iced tea!

Really hoping this goes well. Keep your fingers crossed for me, everyone! Am hoping rheumatologist will prescribe a low dose of immune modulating or suppressing treatment, maybe a DMARD, based on the fact that the only things that have helped me (apart from vasodilators) are prednisolone tablets and albumin infusions. I cannot seem to get the vasodilators to a therapeutic level without running into side effects. So maybe a combo of a DMARD (reduce bad antibodies) and a CCB (reduce vasodilation caused by bad antibodies) will work. I don’t want to take steroids again really, although they did make me feel great during and afterwards (partial remission for three months!). And the albumin infusions were a hassle due to travel, and then only helped for about 48 hours.

I don’t have time to look this up right now, but standing can cause excess catecholamines to be released, and I think that can cause feelings of panic and also diarrhea. People with hyperPOTS get a very large release of catecholamines, but I think it can also happen to a lesser extent in other POTS subtypes and other types of orthostatic intolerance. Dr Satish Raj often mentions testing for catecholamines in his talks (other doctors mention it too but I can’t think of any other names right now!). I can’t remember now whether he has any specific treatment advice. If you don’t mind watching a couple of his lectures it should come up.

I don’t have POTS, but when the blood flow to my brain drops, I lose strength in my legs (probably all over too, but the legs are the most obvious). Your brain fires the nerves that make your muscles work, so if your brain isn’t working well, neither are your muscles. Another way to think of weak legs is that it’s a symptom of presyncope. I believe the knees are what give way first when your body decides to faint, so having weak legs could means you are on the way to fainting. My dad has occasional VVS at times of severe emotional stress. His knees give way and he falls to his knees if it’s a minor episode, or goes all the way to the floor and briefly blacks out if it’s more serious.

@Pistol, I’m glad you have found some good people. I think my specialist is a bit immature. He seems to be frightened of writing an order for a test he is not familiar with, and instead of learning about it from me or by reading research or asking a colleague for help, he comes up with excuses. My dad and I are doing our best to coach him!

@Pistol and @GasconAlex, thank you for the suggestions. I have been training up my dad on the finer points of everything. He is doing his best. @GasconAlex, I’m glad your wife can help you. I have also been looking into getting a support person to accompany me. But it would be very hard for them to deal with the detailed medical stuff. My main problem is that when doctors say weird or stupid stuff, my mind goes into “boggle mode” and I simply can’t reply. I have identified one source this – badly written referrals. My dad is now checking all referrals. We have been shocked at just how bad they are.

Dr Novak calls POTS and adjacent conditions orthostatic intolerance syndromes (as a group). Still not much better.

Dr Satish Raj usually has a slide on the groupings of symptoms near the start of his lectures. I believe I have heard him or another one of the experts say that they do not particularly like the name either. The possibly first modern study (in English anyway) called it something like idiopathic hypovolemia. Yep, here is the abstract just for interest: https://pubmed.ncbi.nlm.nih.gov/3511818/ Idiopathic hypovolemia is also not a good name. We now know other types of dysautonomia, CFS and some others that I’m probably forgetting come with low blood volume, so it’s not specific enough. I think naming conditions after the doctor that discovers them is better, because then the name can’t mislead. Schondorf-Low Syndrome, anyone?

I’ve recently realised how impaired I am at medical appointments. I just cannot speak up or correct people or deal with all their nonsense “on the spot”. I really need someone to speak for me, but I can’t think how to find anyone. My dad (my only family nearby) does his best but he doesn’t know all the fine details of my medical stuff, nor can I expect him to. A friend who I am sure would help is sadly recently bereaved, so I can’t ask her. Other friends are too far away or have health concerns of their own. Thus far the best I can do is a letter from my specialist describing my condition and a “To whom it may concern” from me stating that I need disability accommodations as per our law here, with one of the accommodations being the ability to ask questions after the appt with no extra charge. How has everyone else dealt with this type of situation?

@RecipeForDisaster, I want to quit this job too! Where do I send my resignation letter? 🙂

@Sea otter, it’s hard when people do something that’s ultimately unhelpful, but do it out of concern for you. Maybe you could try to redirect their efforts to help into fundraising or awareness campaigns. I am exhausted too. I have been trying to get my specialist to order me a particular test since August. Last week he emailed me telling me all about how a different test that I don’t need and have never mentioned isn’t available here (Australia). I don’t know whether to laugh or cry or scream in frustration. This is a dysautonomia specialist, mind you, and I seem to know more than he does about this topic. I am going to have to write out for him what to put on the test order. I should get a percentage of his pay cheque!

Please don’t feel guilty about not getting better. You are trying your hardest! I hope something changes for you so you can get a bit more contol and have some time to yourself.

Just another note: I have read that TCD ultrasound is being used in intensive care, mostly for neurological problems such as subarachnoid haemorrhage. But still, the more doctors that know of it in any context the better.

I added this quote in my Doppler ultrasound thread, but thought I’d add it here too: Dr Peter Rowe in Stat press release

@MikeO, I’m glad you like it too. Has the final season been broadcast over there? I haven’t kept track and am not sure if it has been on yet here in Australia. I believe it’s season 10. I must see if I can watch it. I am a bit of a wuss and have to look away when they show his blood phobia and other mildly gory things!

Quote from Dr Peter Rowe in Stat Health press release: That’s just what I was saying the other week 🙂

I hadn’t watched it for a while because I felt it sometimes gets silly and over the top when it doesn’t need to. But the other night it came on and I was too tired to change the channel. And something occurred to me … Doc Martin has a terrible bedside manner but he never ever dismisses anyone with a medical problem. I know, it’s a tv show, and that’s how they write the script, with patients always having a certain disease and him working it out and saving the day. And that part isn’t realistic. But what’s *really* unrealistic about it is that he doesn’t just tell everyone that they have stress or anxiety or that it’s because they are old or young or middle aged or married or not married or have children or don’t have children etc. etc. Made me cry 😞

@GasconAlex, I’m sorry you have to deal with that. I shouldn’t complain about organising a couple of doses of medication around meals. I have an unfortunate tendency to ignore reminders. It’s why I don’t cook any more, as I kept burning things by ignoring the timer bell. A family member has kindly stepped in to organise my tablets and mealtimes for now. Of course, when the medications are working, if I find the right dose, I will no longer have any trouble taking them correctly. A sort of Catch 22.

@MikeO, that is excellent news. So glad you found a good GI doc.

Am now trying captopril, an ACE inhibitor. No side effects so far. You have to take it either one hour before eating or two hours after. With my brain fog and lack of schedule, this is really hard. Am getting fed up with slogging through all of these medications. Being at the mercy of low blood supply to the brain is no fun. I suffer a lot of mental and emotional effects, such as not being able to concentrate, getting frustrated and angry, getting bored, and doing silly impulsive things. It's awful.

@Lob, POTS can be caused by any infection, and really any illness, so it’s possible. I searched for research papers linking POTS and herpes zoster, but nothing came up, so no particular association between these two has been found. POTS and other types of dysautonomia can also appear without any identifiable trigger, so it can be hard to know, but there is lots of anecdotal evidence of people coming down with a virus and getting POTS soon after. Unfortunately, this aspect of dysautonomia isn’t well studied yet. There has been evidence building recently that the immune system is involved, but nothing really affecting treatment options yet.

@Macca, I know this is an old post, but do you happen to remember the name of the psychologist who you saw back then? I have been trying and trying to find someone who can help with chronic illness with no luck.