Sarah Tee

@MarePar, best to phone and ask what the prep for the test is and which medications you can or can’t take.

@LHP, that’s frustrating. Can you contact the person who referred you? Or perhaps there is a patient liaison officer or similar who can help.

Well, my appointment went better than I could have imagined. I am to continue with HCQ, and my rheumatologist is going to try me on low-dose naltrexone (LDN) as well.

Not only that, he is going to email Dr Novak and ask him if he has any of his autoimmune-type OCHOS patients on immune treatments, and if he can suggest anything.

Woo hoo!

It’s my review appointment today after three months of HCQ. I have seen improvements in pain in my hands on weight-bearing activity. I am not sure whether there have been any improvements in my OI symptoms, but I am going to fudge it a bit and say there have been because I don’t think three months is a long-enough trial.

Also, the three months were over our hot summer, and I recently discovered I had had some kind kind of reflux (probably from other medication) which muddies the waters. I have only sorted out the reflux this last fortnight. Additionally I have spent the last few months wrestling with my specialist to order my Doppler scan, which has had my stress levels really high.

So it has done some good, maybe not where I was hoping, but it’s been hard to tell and I need to try another three months at least.

Also, I am going to be rather brave and ask the rheumatologist about low-dose naltrexone (LDN). He specifically said he did not want me to try anything that compromises the immune system, which is why he won’t be prescribing anything stronger than HCQ. Well, LDN does not compromise the immune system, and is fairly safe to try, so I will try to use his own words to convince him.

Apparently LDN can be taken with HCQ. Fingers crossed!

Could someone who is party to the updates/Facebook group remind me of when the company expects to start sending out the device?

I noticed that hypermobility and EDS got a brief but fairly accurate mention on QI (British comedy panel show). There was even a hypermobile person in the audience.

They did dwell on the “party tricks” aspect at first but also mentioned that some people get joint pain and other complications.

@RecipeForDisaster, I’m sorry you haven’t been able to try a vasodilator. I am pushing my ever-reluctant specialist to get me a bottle of nimodipine under compassionate access to see whether that would work better for me.

It is selective for cerebral arteries, but I believe it still lowers blood pressure overall.

I think I remember you had been asking about it too.

There seems to be a good amount of research now documenting hypocapnia in dysautonomia. It would be nice to see them moving to trials for medications or other interventions.

I found out Australians can order ketotifen legally from Japan, where tablets are OTC, so on the outside chance that mast cells are involved in my cerebral vasodilation I am planning to try those too. I have what seem to be ordinary allergies anyway, but haven’t had much success with the OTC hay fever medications available in Australia, so even if the ketotifen will help with that I’d be happy.

I have been able to feel a bit better while taking vasodilators for OCHOS.

(I have the auto-immune type that causes abnormal vasodilation of the cerebral arterioles, i.e. low blood flow to the brain due to rogue antibodies.)

However, my worst time of the day continues to be a truly horrible afternoon slump, when I feel very low, from about 2pm–6pm. I am unable to take a higher dose of vasodilators to fix this due to side effects. And I am also not allowed to take steroids, which would also fix this.

So I’ve decided to attempt to sleep through it.

I’m switching to a biphasic (two-part) sleep pattern of 2am–6am and 2pm–6pm. Biphasic sleep was the norm in medieval times, although people went to bed in the early evening, woke up for a couple of hours around midnight, then went back to sleep.

It also lets me take advantage of the fact that I often feel good from from 11pm–2am.

I don’t know what will happen. It has worked today, but my “slump time” may move and catch up with me. And messing with your sleep times is not a decision to take lightly.

It’s a little inconvenient but, as I don’t work or have other fixed commitments, I’m thinking of it as a long siesta.

I will report back on how it goes in a few weeks.

I heard this once, but have not managed to verify it, but apparently when British tv programs show medical conditions the portrayal is supposed to be factually correct. It’s part of the broadcasting code of conduct or somesuch.

So having POTS on a British program is sort of significant.

@MikeO, would they consider giving you an insulin pump, and would that give you more control than the fast-acting insulin?

@Estelle, I’m hoping the midodrine might be helping by now.

You are most welcome to start your own post with questions.

Have you tried your local dysautonomia support group on Facebook?

https://www.dysautonomiainternational.org/page.php?ID=24

Can be a very good source for specialist recommendations.

@TorturedSoul, I’m sorry to hear that the doctor doing the testing wasn’t very communicative and didn’t suggest any follow-up.

I think there are one or two folks diagnosed with HYCH here.

I could only hope that the doctor who did the testing sent instructions to your neurologist on what to do.

@Sushi, that is great! I must have missed that episode. Was it in the final series?

@MaineDoug, that’s wonderful news!

Also, if you click on the heading “Our Specialists & Multidisciplinary Team” on the clinic page you could see whether any of the doctors listed are recommended by anyone in the Facebook groups. And you could also search for reviews, although review sites tend not to have many reviews for Australian doctors.

@Rinn, I live in Victoria so I haven’t tried to get referred there. I just tend to keep an eye on anything Australian that gets mentioned.

I would suggest asking in these two Aussie Facebook groups:

https://www.facebook.com/groups/270234122634/

https://www.facebook.com/groups/DysautonomiaInternationalAustraliaSupport/

@Caterpilly, I cut a tablet in half and swallowed one half as normal, with a small glass of water – no bitter taste. But then I put my tongue on the cut edge of the other half, and it does taste slightly bitter.

So if you swallow a cut pill as normal, not bitter, but if you have trouble and it stays in your mouth for a bit longer, it is slightly bitter.

But nowhere near as bad as steroid tablets, for instance, which I found I couldn’t swallow fast enough to avoid a very bitter taste, even when they were whole.

Sorry I seem to have managed to get everything wrong!

13 minutes ago, Caterpilly said:

Ha, wow, you cut them into quarters, you got skills! I would’ve ended up with a pile of dust lol.

My rheum got back to me tonight and called in the prescription to this discount mail order Rx company that shows they have the 100mg. So far it looks like the order went through but I guess we’ll see what they ship me! 
It’s good to know you didn’t have a bitter taste though if I wind up having to cut them. 

Oh good! I hope they come through.

@Caterpilly, I am so silly at the moment. I just checked my tablets again and they are 200mg. I must have cut them into quarters at the start.

My brain is a mess! Sorry for giving you wrong info.

(For what it’s worth, I did not notice a bitter taste when taking partial pills.)

@Caterpilly, I didn’t know about taking the antacid separate to HCQ. I will make sure to do that.

Sorry to hear you can’t cut the 100mg in half. It’s quite possible I wasn’t supposed to do that either. I just checked my tablets and they are not scored down the middle. Oops. I only did it for a week so hopefully no harm done.

No worries about replying on this thread. I am checking alerts/posting again now. The hot weather in Australia and the wait for some testing was making me very stressed, but it’s now cardigan weather and my test is happening soon, so I am feeling a bit better.

I do understand about being on your own and having to manage. I am on my own some of the time and always seem to get sick when no-on else is here, or at night when I don’t want to wake anyone up.

I do hope you find something helpful soon. I understand the feeling your illness is getting out of control.

I’m approaching three months but I can’t report yet on whether HCQ has helped me because of some other stuff that has been happening. I just found out that I’ve been feeling awful due to some kind of reflux thing, maybe due to another medication, maybe due to problems caused by my old bowel surgery, maybe both.

I have started an OTC antacid and made some changes to my diet and how I take my other medications, and am going to seek advice shortly on what else to do.

Discovered it by chance. Would never have guessed and I doubt doctor would have worked it out either as it didn’t seem like reflux and I just thought I was getting worse generally and would not have mentioned it as being new.

It manifested as feeling completely hideous on waking, but no specific symptom I could describe. That hideous feeling is gone already, and now I’m just back to good old OI fatigue etc.

@Caterpilly, don’t give up just yet. Could you cut a 100mg pill in half?

From what I’ve read and experienced, your body does adjust and side effects can subside, so it’s still worth starting low and gradually increasing.

Just because 200mg didn’t go too well for you straight away doesn’t mean you won’t be able to work up to it.

I definitely couldn’t have tolerated 200mg in one go on day one, but now I take 100mg after lunch and 100mg after dinner with not too much trouble, just a slight GI disturbance that I can put up with until I see whether it works, and that will become negligible in the scheme of things if I feel better in other ways.

So I would suggest taking it after main meals and splitting the dose once you get beyond 50mg. And make sure to have foods that are easy for you to digest.

I did a low-residue diet to provide a cushioning effect. That’s because I used to follow that diet after I had my bowel surgery and it works for me. Your “easy to digest” foods may be different, of course.

Many people recommend oatmeal or porridge as having a calming effect.

***

I do understand reacting to things or always getting side effects. I’ve been there too with other medications that I had high hopes for. However, I have no colon, so I hope that if I can get used to HCQ, so can you.

Take care,
Sarah

Oh, of course I should add that DINET has been instrumental in all this.

Thank you, DINET members and creators, past and present!

Better get myself some dinner. Having a bit of a funny time with medication side effects lately but struggling on.

Courage, everyone!

@Jyoti, I’m sorry you are having to go through this too. Words are failing me this evening. I do hope we will hear from you soon that someone is going to investigate.

Thanks everyone for your kind words. The weather has cooled off a bit here so driving to Melbourne (nearby capital city) won’t be too hard. I am keen to get it done, and nervous in case it shows nothing … argh!

Another factor to consider is that about 10% of people don’t have “windows” in their skull to allow transcranial scans. I could possibly still get it done on the carotid artery in the neck.

Dr Novak uses the middle cerebral artery (inside the skull), Dr Visser uses the carotid artery. I don’t know why each has their preferance, but as Dr Novak described OCHOS I have suggested we follow his method.

(The new gadget from Stat Health uses the first branch from the carotid artery because it handily passes behind the ear, an ideal knobbly spot to stick something on your head.)

(Edited to fix typo)