Sarah Tee

@MomtoGiuliana, thank you for that info and link.

I have found out from someone on the Australian Facebook support group that there is now an “oral delayed release capsule” of 20mg. He has not taken it and did not pursue the injections, and doesn’t know who or where is prescibing it.

I don’t know whether this dosage or delivery method would be suitable in dysautonomia, but it is interesting to note. A lot easier than subcutaneous injections, that’s for sure. It seems to be available worldwide and is listed at Drugs.com if you want to look it up.

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I have also heard from a helpful person on the Australian Facebook support group. She uses octreotide occasionally when she needs to be upright for several hours at a time, e.g. attending a special event. She has POTS.

She was prescribed it by a neurologist in Melbourne who has now moved to a different area of interest and doesn’t take on new POTS patients. So that is a dead end.

I notice there’s mention of it being used in the UK in the previous forum links that MomtoGiuliana kindly posted.

I wonder if that was the patients described here, or others treated by the same team:

https://www.hindawi.com/journals/crim/2015/545029/

The insulin pump method sounds as though it greatly reduces side effects by allowing a smaller, adjustable dose. Also, switching off the dose at night, when you are horizontal, is mentioned somewhere. I can’t imagine fighting for that here! I follow a blog of a woman who managed to get an insulin pump for cortisol. I think it took her two years.

https://chronicallycrappy.wordpress.com/2019/05/19/how-i-got-a-cortisol-pump/

Thanks, @MomtoGiuliana, that’s great. Did the person you were researching it for end up trying it?

Thanks, @MikeO, I hadn’t looked at Wikipedia yet. It is certainly interesting stuff. I am amazed that it can cause diarrhoea and treat it (potentially). I wonder if that is dose dependent or some other factor.

I found this quote from Dr Robert Hoeldtke, who I believe pioneered using octreotide for POTS. (Please correct me if I am wrong. The other place I found that has investigated it, with a novel delivery via insulin pump, is the Countess of Chester Hospital, a public hospital in the UK.)

It is not very promising:

Primer on the Autonomic Nervous System (Third Edition), 2012

Adverse Effects of Somatostatin Analogs

Octreotide causes abdominal cramps, nausea and diarrhea in about 50% of patients, and is rarely tolerated by patients with diabetic autonomic neuropathy or underlying gastrointestinal disease.

Octreotide suppresses gallbladder emptying, and many patients develop sludge or gallstones during chronic therapy. These are generally asymptomatic but cholecystitis can occur.

Postprandial hyperglycemia develops in about 40% of patients taking octreotide chronically. We recommend administering the drug 15 minutes after the beginning of breakfast. Sufficient insulin will be secreted under this circumstances to minimize postprandial hyperglycemia.

We have never seen chronic octreotide therapy lead to an elevation in glycosylated hemoglobin concentrations or a diabetes-related complication.

Octreotide should not be given to patients who cannot tolerate it. Many patients with POTS, for example, have the irritable bowel syndrome, and octreotide worsens that. Similarly, administration of octreotide to patients with inflammatory bowel disease invariably exacerbates their symptoms. Inflammatory bowel disease is an absolute contraindication to octreotide therapy.

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Not too cheery. But I have information from the other side. Some years ago, I had my colon removed and everything rejigged and reconnected in an arrangement called a j-pouch. Some people who have this surgery end up with terrible diarrhoea. And guess what is sometimes prescribed to treat that? Octreotide. So I know that even though I have had bowel surgery, my surgeon would okay octreotide if I needed it. So I know it’s safe to try from a bowel point of view.

I have read a few threads on octreotide from members here, which has been very helpful. Search “octreotide” in “everywhere” in the search box and you’ll find them.

I am getting close to being out of treatment options, but the last one on the list is octreotide.

I have mentioned octreotide to my specialist at least four times since I started seeing him, and his only comment was that it is not covered by the government subsidy here in Australia and costs a fair bit.

It depends on what dose you settle on, and whether you get the extended release, etc. etc. but it would be somewhere in the region of $AUD300 per month, which is about $US200. Not cheap as I no longer work, but I could pay for it for a few months without too much hardship. And the pharmaceutical company may grant a price reduction through its compassionate access scheme if it works for me, plus I have a small nest egg tucked away that could cover costs for a while. And who knows, if it helps me, I might even be able to do a little work.

Last week, I said “Okay, let’s try octreotide” only for him to suddenly disclose that he can’t prescribe it and doesn’t know who can. Sigh.

So now I am on the familiar chase of searching for leads, posting questions, on Australian Facebook pages, scrutinising every scrap of information I can find. So far I have gleaned that at least two people have been prescribed it and posted on Facebook to that effect about five years ago. Unfortunately neither has responded to my queries (I hope because they are out living a happy life).

My specialist has not offered to do any chasing, but I will be asking him to do so when I see him next. All he has to do is pick up the phone and say “This is Dr X. May I speak to Dr Y?”.

By the way, I realise octreotide comes with lots of risks. I am not determined to try it, but I am determined to discuss it with someone.

In other news, I am pursuing a different track; namely, seeing a rheumatologist. Two of my other doctors think that my response to steroids (during and after) could indicate an auto-immune or auto-inflammatory disorder.

I would also try to find out about the new POTS specialist. If you have their name, see where they used to work and whether there are any reviews or if they have been listed on the Dysautonomia International specialist page.

I would just hate to think of you waiting until November to see someone who might not be much good. (I only worry about this because if your cardiologist hired them, he might not have been very discerning given his lack of knowledge on POTS.)

Sorry you had to deal with someone so ignorant.

There has been a little bit of research into this, but as usual with POTS much more is needed:

https://pubmed.ncbi.nlm.nih.gov/25001527/

I find this survey of 5000 people reporting their experiences with POTS useful:

https://onlinelibrary.wiley.com/doi/10.1111/joim.12895

I have “POTS without the T” (chronic orthostatic intolerance, an adjacent condition) and I certainly have trouble thinking.

Also, dear lord, midodrine does not do the same thing as fludrocortisone by any stretch! As you’ve probably seen in your research, people with POTS are sometimes prescribed both.

I do hope your next doctor can help. I’m afraid brain fog can be a hard one to tackle directly, but working on your treatment in general does sometimes reduce it. People do sometimes try stimulant and stimulant type medications such as modafinil.

@Pistol, that sounds like a very sensible approach. If I am called on to document/prove my exercise intolerance, I will organise a physio to evaluate me.

My specialist is going through one of his occasional annoying phases and suddenly asked me for evidence that a treatment worked (beyond my saying that I felt better, could do more, etc.).

I am hoping he will return to being helpful next time I see him, but just in case I want to have some ideas on this.

@RecipeForDisaster, I’m sorry to hear your friend didn’t get any progress from having the test. I imagine it might have cost a lot of money too. Oh dear.

@MikeO, I’m guessing sports scientists can test it. I feel jealous of their equipment and testing sometimes – imagine if that was made available to sick people. But we are not glamorous or money spinning.

Maybe it’s just as simple as asking the patient to do certain things until they have to stop, like squats or climbing stairs or treadmill, as you say.

But doctors do love an objective measurement!

Bummer.

I really need to win Tattslotto so I can buy all the testing equipment I want and set it up in Australia somewhere. If i won enough I could set up my own autonomic lab, although I don’t know who would staff it here.

Okay, found it. It is called an invasive CPET or iCPET, and the person who has used it to investigate CFS is Dr David Systrom.

Info about the test:

https://www.uclahealth.org/medical-services/pulmonary/pvd/conditions-treatments/invasive-cardiopulmonary-exercise-testing-icpet

Some of Dr Systrom’s research:

https://journal.chestnet.org/article/S0012-3692(21)00256-7/fulltext

It seems like the standard CPET is fairly widely available but the iCPET is specialised. Do correct me anyone if I’m wrong.

Both do however seem to be aimed at investigating shortness of breath, although maybe Dr S uses them to look at it in a different way.

I do get a bit puffed when I’m symptomatic, but I don’t think I have actual shortness of breath. Maybe if I went for a jog? Usually I notice my exercise intolerance at home when climbing the stairs or doing squats. Mine is more like having no energy reserves to power my muscles than being short of breath.

Edited to add: There are also references to a two-day CPET. That is having the test twice, on consecutive days.

https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/

https://neuroimmune.cornell.edu/research/physiology/

@MTRJ75, I might be seeing a physiotherapist soon and will ask if they have any thoughts. Presumably they can test muscle strength and endurance.

I suddenly remembered reading about a test that is given to people with chronic fatigue syndrome by one of the centres/specialists in the US. I will just dig around and see if I can find it.

It was described as being very comprehensive but also exhausting and often putting people into a flare. (It wasn’t only for CFS, but that is where I happened to read about it.)

Is there a way to measure exercise intolerance? I’ve had a bit of a read, but most of the tests seem to be looking at heart function, and I don’t have any heart problems.

Is there a test that looks at how quickly your muscles fatigue?

I have measured exercise intolerance myself at home by how many squats I can (or can’t!) do, but it would be nice to have something official that I can wave at doctors.

I have seen a couple of mentions of blood volume decreasing when the body is upright because plasma (?) gets squeezed out of the capillaries into the surrounding tissues by gravity/pressure.

I’m imagining squeezing oatmeal through pantyhose!

Haven’t seen it mentioned in the dysautonomia literature though. Has anyone else heard of this?

In normal people, it mustn’t make much difference, but if you already have low blood volume and pooling in the lower body and legs then it all adds up.

I found this article and it seems to describe this shift:

https://pubmed.ncbi.nlm.nih.gov/11538894/

Very pragmatic, @MikeO. But you know they all want a fancy -ologist or -isicist to help them feel better that they get no respect at cocktail parties 🙂

My dad and I were driving to see my specialist the other day, and we started brainstorming names for if this ever gets its own specialty.

We came up with:

Autonomicist

Dysautonomicist

Autonomic physician

Autonomic physiologist (after electro-physiologist)

I’m sure you can all come up with some better ones 🙂

https://www.facebook.com/ASFalcon13

Only viewable if you have a Facebook account.

Scroll down to 31 March and you will see his first post about being tested. V interesting. Including that he gets his blood volume measured by CO rebreathing, the same technology I posted about yesterday.

Followed by a bit more info on 6 April. Click on the photos for more info.  I think he had a rather yucky time!

Could NASA run an after hours OI clinic to make use of all that lovely equipment for the greater good? If your doctor asks you where you think you can get your blood volume tested, just tell them “Johnson Space Center” 🙂

@RecipeForDisaster, me too. I would like to prove (or disprove) that the treatmemts that make me feel better are normalising my blood volume.

My dad is a journalist and used to do a bit of PR as well. I’m hoing to set him the task of emailing various autonomic specialists to tell them about this machine, and emailing the company that makes it to encourage them to market it to autonomic labs.

I see that the company has a program to lend a device for free for two months to scientists/researchers. How great would it be if we can get one to some autonomic researchers in Europe? I know there is an autonomic research group in Sweden, just next door!

Thanks @MikeO, it isn’t too bad for now. We are all keeping a close eye on each other. Neighbours kindly dropped off some supplies and pharmacist organised anti-virals for eligible household members. Had to cancel a few appointments but everyone very understanding and no cancellation charges.

I happened across this machine, which measures blood volume through blood samples taken before and after “rebreathing” (not exactly sure what that means):

https://detalo-health.com/demonstrating-blood-volume-measurement/

I wonder whether this will be suitable for us? I know several studies have found abnormal CO2 levels in the outbreath of OI patients. This says it uses CO, not CO2, so maybe it will be suitable.

It’s currently sold for use with athletes and the company is in the process of getting it recognised as a medical device. It is a Danish company.

I wonder how much it will cost. If I win the lottery I will donate one to the hospital clinic run by my old autonomic specialist. It says it can be operated by non-specialist medical staff i.e. anyone who can do the required blood tests before and after.

Or I could train in phlebotomy, put the machine in a nice truck, and drive around Australia with it!

But seriously, I will write them an email next week and suggest they mention it being used in autonomic disorders. They have other conditions listed as potential clinical applications so we could be added to the list.

Well, the doctor’s office let me email my paperwork, has me on the books, and I have an appointment booked in June. So that’s good.

Bad news is that extended household member has tested positive for YOUKNOWWHAT. I probably have it too. No-one has symptoms yet. So coffee and cake is off. Also bowel scan next week may be off.

Good news again is that I ordered a box of fruit & veg that will be delivered to front verandah today.

@MTRJ75, when will you have your biopsy? Is there a long wait?