Sarah Tee

Ugh, I now seem to have failed candesartan (an ARB) as well. My urine output went very low. Had a blood test but it’s pretty obvious what’s going on. Seems to be a common side effect. Have stopped tablets to see whether that fixes it. Did not think it was going to be hard to find a CCB, ACE inhibitor or similar vasodilator that I could tolerate. Have sinking feeling that I may need nimodipine, which my specialist of course won’t be able to prescribe and which is not covered by govt medication scheme.

Did you see this article? It looks at 31 patients with symptomatic MALS who had surgery. It seems to be saying that the patients experienced improvement in their MALS symptoms (abdominal pain, nausea, vomiting), but not in their POTS symptoms (dizziness, syncope, chest pain, palpitations). https://pubmed.ncbi.nlm.nih.gov/33338494/ But I imagine that people with MALS and POTS who are not having the usual MALS symptoms wouldn’t be offered MALS surgery, so there won’t be any studies on that group, unfortunately.

I finally managed to get back to some exercise today. I’m afraid it felt rather joyless but I gritted my teeth and got it done. I am relieved that after my little “adventure” the other week (adverse reaction to verapamil), my BP behaved itself during and after exercise.

Does it beep at you when your blood sugar is getting too high or low?

https://www.medrxiv.org/content/10.1101/2023.10.11.23296612v1 There is not much information on this device or the company making it when I Google. The article is a pre-print. The lead author has benn involved in some interesting/relevant research if you scroll through it: https://pubmed.ncbi.nlm.nih.gov/?sort=date&term=Favilla CG&cauthor_id=37873126 I am convinced that cerebral blood flow testing is the next big thing 🙂

The University of Utah has its TCD up and running: https://healthcare.utah.edu/neurosciences/neuroradiology/transcranial-doppler The autonomic specialist who received the grant is Dr Melissa Cortez, director and founder of the autonomic physiology laboratory at the university https://healthcare.utah.edu/find-a-doctor/melissa-cortez And Johns Hopkins autonomic specialists can presumably order testing for you too: https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/neurovascular-laboratory/transcranial-doppler

The frustrating thing is, there’s a transcranial Doppler (TCD) set-up in a hospital in my near-ish capital city. All it needs is for an autonomic specialist to call the head of the testing dept, schmooze them a bit, make a case for how great measuring cerebral blood flow velocity in patients with dysautonomia would be, and direct them to Dr Novak’s publications, which seem to have a lot of technical detail. They could even contact Dr Novak. He mentors people already through a Dysautonomia International program/grant to set up TCD for autonomic testing. Sadly my specialist is not dynamic enough for any of that, although he does sometimes do unexpected things, like the time he organised albumin infusions on very little evidence. So you never know!

Looked at the website today and finally there is content! https://www.stat-health.com Unfortunately the text is reversed out, white on black, proven to be less legible to normal people, let alone us folks with brain fog. I read it with the “Reader View” on my iPad. The exciting news for me is that the company is planning to make a medical device version in the future. Hurrah!

@GasconAlex, it’s all about passing the buck, isn’t it. I have briefed my dad on it all and he is taking over running my appointments. Hope he can spur someone into some kind of action.

I have to have them a lot (got my colon removed so actually I have a sigmoidoscopy). You can explain that you are prone to severe dehydration and fainting and ask for “modified prep” and IV fluids. For example, in my case, I don’t have to take Fleet, just be on clear fluids for x time and do warm-water enemas at home. Still hard not eating but better than having burning diarrhea! I don’t have a colon, so my instructions won’t necessarily work for someone who does, but they should be able to come up with something. (Fleet is the nasty stuff they give us here to clean out the bowel. Not sure what’s in it. May be magnesium citrate. Tastes foul!)

@MaineDoug, how are you going this week? Did you get your surgery date yet?

@MikeO, thank you for the suggestion. Am taking my dad with me to appointment. Hope he can get something sorted out for me. Recent events have made me realise that my position is precarious. I am wishing now that I had stayed with my old specialist. This new one was trained by the old one, but the new one doesn’t have his own rooms, can’t phone us or contact us quickly for urgent matters, and doesn’t have any back-up. I feel I am stuck with the new one, because my old specialist now has a two-year wait time. I only changed because the new one was seeing patients in a nearby town once a month, saving me a two-hour trip to Capital City.

I’m going to see my autonomic specialist tomorrow. I have realised that it is probably beyond him to organise for me to have a transcranial Doppler ultrasound (TCD). It is available in a hospital in the capital city near me, but no-one uses it for autonomic testing yet, and I don’t think my specialist is up to the task of getting them to do it. So what kind of “normal” specialist would investigate cerebral blood flow? (By the way, my blood flow seems to be reduced even when I’m lying down, judging by my symptoms. It seems to be more to do with time of day than horizontal/vertical, although I do of course feel worse if I stand in a queue or something like that. So I don’t necessarily need it measured during a TTT.)

The talk on this gadget from the Dysautonomia International 2023 conference has been released: https://vimeo.com/859062357 I haven’t watched it yet, so I don’t know how much it differs from the talk done for Solve ME that came out a little while ago. Edit: Unfortunately the audio is a bit echo-ey. Still understandable but a bit of a strain to listen to.

@Pistol, that is very interesting to hear that you had wide pulse pressure too. I am sorry you had to go through that. With hindsight, I am sure now that I was having an idiosyncratic adverse drug reaction. It was a particularly odd one, because it was happening each evening when the dose wore off, and it became more severe when I tapered the dose. Unfortunately I had a slight relapse during an appointment with my colorectal surgeon. My face went red, I didn’t feel quite myself, and when I got home sure enough my BP was a bit high. But since then I’ve been okay. Just back to my “normal” symtoms. Argh 🙂

My dad has signed up for the conference lectures. Only $25US, although they will be released for free as the year goes on. The one from Dr Novak on cerebral hypoperfusion is the drawcard for me, and it hasn’t been released yet. Edited to add: Discovered that not all the lectures have made available for people who have registered yet. Unfortunately Dr Novak’s talks are not up yet. I was hoping to watch it before my next specialist appt.

@MikeO, I hope this will be a big help for you, and that it gets approved for permanent use.

Even though diagnosis is a positive step, it can lead to feelings of grief, anger, denial, sadness, etc. So just to watch out for those. I hope your cousin will have some improvements with treatment soon.

Apologies, everyone, I was a bit incoherent the other day. I am fine now, if a bit shaken. BP is normal, heart rate is up 20 but I don’t care 🙂 @MaineDoug, Pulse pressure of 100 was the difference between my systolic and diastolic. My blood pressure kept going up weirdly to about 190/90 for about 8 hours each evening. This was at rest. It seems to have been an unusual reaction to verapamil. When my dose wore off, I got this odd high BP, headache, pressure in my head and a red blotchy face. When I reduced the dose of verapamil, the next night it went to 200/110. I actually think this had been happening for about a week, but I always take my BP in the afternoon, so I didn’t pick it up. In the end I weaned onto candesartan and off verapamil. I’m just taking a low dose of candesartan now and my BP is back to normal. I worked out the intracranial hypertension myself. I could be wrong of course, and it’s all over now, apart from some lingering headaches, so I’ll never know. I’m sorry to say say that nobody would investigate while it was happening. @MTRJ75, you are right. I guess I’ll never know, as nobody would take any notice, even as it was getting higher each night. This is the first time in my life that I’ve had an odd blood pressure reading. I said to my dad “Now I know how all the other people on the forum feel, getting all these unusual readings!” Dr Novak prescribes verapamil for some of his OCHOS patients, so it’s not contraindicated. I have found some scattered reports from people who were taking verapamil for on-label reasons and suddenly experienced either very high blood pressure or very labile blood pressure. They didn’t mention headaches or pressure in the head though. Perhaps it was a bad reaction to the verapamil mixed with OCHOS effects. Anyway, I’m fine now, won’t be taking any more verapamil. I didn’t have a bad reaction to any of the other calcium channel blockers I’ve tried so far, so will be brave and keep trying. After a break, of course!

Ha, that’s what my dad says about me. But I’m afraid we are usually having the disagreement type of argument, not the logical laying out ideas kind. I certainly have a lot to say when I’m in a bad mood!

My knees are wobbling. The “senior” doctor at Emergency told me I had anxiety when I had actually been experiencing the beginnings of elevated intracranial pressure. Dear Lord. The “junior” doctor did ask me some questions that may have been related to intracranial pressure. I did not have the full-blown symptoms, such as vomiting, unresponsive pupils and shallow breathing. Did have mild visual disturbances though. Either she dismissed it, or the senior doctor disregarded it. My specialist didn’t cotton on at all.

Eek, I just discovered that sudden wide pulse pressure can be caused by elevated intracranial pressure.

All you folks know so much more than me – may I pick your brains? If your pulse pressure suddenly goes from normal (about 40) to 100, what does that mean? (I’m asking in terms of what is happening mechanically.) My systolic was high, diastolic slightly high: 190/90. My regular BP is 135/85 or thereabouts.

@MikeO, thank you for checking on me. I seem to be doing okay. Still slightly higher BP than my normal, but the candesartan seems to be keeping it under control. Headaches and red face much reduced. I agree, pushing one thing can make something else go wrong or have an opposite result. When your body makes its mind up to be in a certain wrong equilibrium it can be stubborn. I would love to put paid to the cerebral hypoperfusion, rather than trying to “fight” against it with vasodilators. I have a feeling that IVIg or some other immune treatment would do it. Steroids certainly help, and for months after. Am seeing rheumatologist at end of year, not holding breath though. And of course those immune-type treatments are not easy or risk free. I’m glad you are hitting your BP average. I will start aiming for a good average when things settle down. Maybe I need to get a cardiologist.

@Pistol, thank you for your kind words as always. I found a few mentions here and there on forums from other folk getting alarming high blood pressure after taking verapamil. Some indicated it was subsiding so I have hope. I have to admit my dad and I have come up with our own plan of reducing verapamil while adding in candesartan. (My specialist’s vague unhelpful emails can be interpreted as authorising this, although what he actually meant, who knows!) We spent four days trying to get actual medical advice before taking this path, which I know is not ideal, but my flushed face, headaches and alarming stats had to be acted on and nobody would give us clear instructions. I couldn’t spend more weeks with stroke-risking BP for 12 hours a night. They are approved for use together. The candesartan seems to be controlling the weird high BP. Soon I will be on just candesartan and hopefully heading back to normal. I actually took candesartan for a while last year for what we thought was ordinary hypertension before I knew I had OCHOS. So I know it is okay. This has all been very stressful not only from what’s happening but from the lack of support and guidance from doctors. *** I actually looked up the law in Australia the other day to see whether doctors can prescribe for themselves, as I was indulging in a flight of fancy of qualifying in order to treat myself. Amazingly, apart from a couple of classes of drugs (I presume the addictive/street value ones), it is allowed! There are the usual wishy-washy guidelines saying it is not recommended, but it’s not illegal. Med school, anyone?