Sarah Tee

Oh dear, @MaineDoug, that is almost identical to what was said to me. At least your one did something, but yelling at patients? Really? I wish there was a medical Gordon Ramsay to go round and light a fire under all their butts! It appears I am having an uncommon but known reaction to verapamil. It’s not fun but I’m not in danger ATM. Hoping it will wear off. I’m glad your “insides” are better.

Worries continue. BP is rising every afternoon/evening, plus headache and hot red face. Specialist has told me variously to increase verapamil to three times a day, and to reduce it to nil over three days. Have no idea what to do. Frightened that this has permanently affected my BP, which has never been this high, ever. Trust me to get high BP from something that’s supposed to be anti-hypertensive! On the plus side, have found new GP. Haven’t had appt yet but hopeful she will be good.

@Jyoti, that is wonderful to hear! My trip to Emergency was pretty useless and I encountered a depressingly sexist female doctor. I apparently caused my blood pressure to go up by … wait for it … measuring it. Even though I have been measuring it every day for a year on doctor’s orders and it has always been normal. I guess quantum physics applies to blood pressure cuffs! (For those that are not geeky about science, there is a famous experiment in which measuring or not measuring light travelling through a double slit makes it “turn into” particles or waves.) Specialist has also been hopeless and it was his failure to warn me that this might happen caused all the worry in the first place. Apparently he thought it would go up in the evening but didn’t bother to tell me. I despair at his woeful communication skills but there is nowhere else for me to go. Anyway, I have now pieced together what is going on and am no longer worried.

@MaineDoug, sending positive thoughts to you from Australia. I’m about to go to Emergency because I need help with my blood pressure medication. Hoping it won’t be too awful but it’s the only way to see a cardiologist in a hurry and my BP has been up way too high. I hope you hear back about your surgery date soon.

Just got message back from specialist. He seems completely unconcerned. I thought 175/90 was worrying. Various reputable sources are saying to get yourself to your doctor or to hospital if it gets to 180. Am currently in okay range again (late afternoon here).

Well, I had a strange afternoon and evening yesterday. I have been having headaches, not that bad, and a hot face and hands, plus the occasional “wobbly” feeling internally. Thought it was all pretty normal for settling into new medication. Then yesterday I happened to take my blood pressure in the early evening and noticed something was wrong. My systolic went up and up to 175 at 11pm. Diastolic normal. I felt a bit off, but not terrible. I read that you should head to the hospital if it gets to 180. Family member was on standby. I laid down and did slow breathing, and it went down to 150 and I went to sleep. This morning, after one reading of 165, it is back to normal or just slightly high range. I have contacted my specialist. Bit worried as to what is going on. Although I am considered to have hypertension, it has never been that high before and the systolic and diastolic usually track together.

@MTRJ75, that’s good to hear. I find myself reading studies sometimes at night too. I hope there will be big advances soon in knowledge of auto-immune/inflammatory conditions. The mysterious part seems to be that the antibodies detected (or not) in blood tests don’t necessarily correspond with the person being unwell.

Just for anyone who may be reading this in the future when following a similar path with hypertensive-type OCHOS, I wanted to mention that as well as the possibility of combining low doses of different classes of vasodilators (e.g. CCB + ACE) there is also the possibility of combining low doses of two CCBs of different classes. I believe this is called “dual calcium-channel blocker therapy”. Rather dense article on the topic: https://www.medscape.com/viewarticle/407732_3 I will be discussing these combination options with my specialist if we don’t find a single drug that vasodilates my cerebral arteries/arterioles enough without problematic side effects. Still slowly slowly increasing verapamil this month. Maybe someone can film me sitting in my dressing gown in the kitchen for a “Slow Medicine” tv special 🙂 https://theconversation.com/why-slow-tv-deserves-our-divided-attention-110695

This blog has some good reviews of heart and blood pressure monitoring gadgets that I thought folks might be interested in: https://theskepticalcardiologist.com/category/medicalfitness-devices/

Oh, that’s great! I suspect my mum had Sjogren’s, so I have read a bit about it over the past couple of years. I don’t have any signs yet, but wouldn’t be surprised if it showed up when I hit my 60s. I wonder whether this drug helps dysautonomia symptoms either directly or indirectly. I did see in one of Brent Goodman’s lectures an estimate of 50% of those with Sjogren’s having autonomic problems as well. @MTRJ75, I hope you feel better soon and can get some sleep.

@Pistol, thanks for all the links. I will look at them soon. I saw the counsellor yesterday. I think I talked the poor woman’s ear off! I must give her a printout next time with my illness timeline on it. I will go again in two weeks. (When she did get a word in she said helpful things.) She hadn’t heard of POTS (I usually open with “You know POTS? Well, I have something similar”) or the auto-immune skin disease that has been the cause of my recent upset, so she must have felt like she was in a medical lecture, not a counselling session!

Sorry to hear that, @MaineDoug. I had been struggling for years with my OI symptoms, finally got a medication that worked, had six weeks of feeling a lot better, then had some bad news about something else healthwise that has thrown me into a spin. I hope you will get lots of help from physios after your hip operation.

Excellent!

@Derek1987, oh dear, I’m so sorry you are still in pain. Looks like I really put my foot in it with that suggestion! Lying awake is the pits.

Rediscovered the reference for this one: It was Dr Grubb in this older article: https://www.ahajournals.org/doi/full/10.1161/circulationaha.104.482018 Worth a read.

@Pistol, I went down to a lower dose for a few days, then back to the starting dose. No headaches! Now I just have to slowly increase as per doctor’s schedule and see if it works for my OI.

I seem to remember that pain can cause blood pressure to go up. Could it be that the medication has brought your pain levels down and this has led to your blood pressure coming down a bit? Whatever the reason, I’m glad you had some good news. So often medications can have side effects or a negative effect on a different condition or symptom.

@Jyoti, you can send it back within a certain period if you decide you don’t want to keep it, but the company retains $US100 as a “restocking fee”. I think it was a month. But after that, as you say, it becomes worthless if you can’t or don’t want to continue to pay. I think you are right about the base station – you probably “dock” the earpiece in the base station and the base station uploads the data to your phone. Or maybe you put your phone and the earpiece on the base station together. Interesting to read about those other “health wearables”. Maybe if the technology in the STAT device isn’t patented, or if it is patented and another company wants to pay to use it, rival wearables that measure blood flow to the brain could come out with different pricing models. And maybe one brand could even come all the way to Australia – I’m testing out medications right now to increase blood flow to my head and having something to measure that would be so handy!

I was reading a thread about the cost on a CFS forum. The folks there were not happy at all about the subscription model. I do think some of them were a bit too harsh, but there were some good points as well. For instance, one person pointed out that people on a low or fluctuating income can save up for a one-off purchase, even if it takes them a while, but would find it very hard to commit to periodic payments for an indefinite amount of time. Also the usual problems of something that only works if you pay a subscription. If you can’t pay, you are left with a useless earpiece, and you can’t even sell it or give it away. Do any other wearables have this model? I don’t have a smartphone and avoid apps. I don’t even like buying PDFs of knitting patterns because, unlike printed booklets, you can’t sell them or give them away. *** On a separate note, I saw mention of a base station. @MikeO, is that just for charging?

By the way, I don’t have POTS, but I do have orthostatic symptoms and postprandial ones too. I have found that eating a high-carbohydrate breakfast would often make me feel worse. So porridge is out, for instance. Other meals didn’t seem to matter either way, but I try to stick to lower carbohydrate intake for general health reasons. A low-carbohydrate breakfast sadly didn’t make me feel normal, just “less worse” than porridge would! Also, weirdly, fasting before a blood test or procedure would sometimes greatly reduce my symptoms for the whole day, even after I had had whatever it was done and eaten lunch. But I found this impossible to replicate consistently. On other days not having enough to eat or regular snacks would leave me feeling worse than usual. So my diet pick is a low-carbohydrate breakfast followed by reasonably low carbohydrate intake for the rest of the day.

@Pistol, I will give it a good trial. Am going to lower starting dose and will see what happens. (Doctor said I could start lower than he suggested if needed.) You are a model of patience. I want to throw everything out the window about five times a day 🙂

If someone laughs, ask them: “What’s the joke – do share!” (in a friendly tone). If someone makes a comment about your walking, say: “Yes, I can walk, but only about five metres. Then I pass out and you’d need to put me in the recovery position and call an ambulance.” If someone stares, say: “Hi, sorry, do we know each other? I’m terrible with faces!”. I’m sorry some people are jerks. I don’t know where they got their bad manners. I remember it was drilled into me when I was young never to stare at people or comment on disabilities or differences, probably a bit old fashioned but better than pestering or staring at people. I don’t use a mobility aid, but I’ve noticed that if I say I’m unwell when dealing with a bank or similar, some people will become patronising and proceed to treat me like a five-year-old.

@Pistol, did you ever have headaches with verapamil? I don’t usually get headaches, but it’s been three days of verapamil and three days of headaches. (Not awfully painful, but enough to stop me from reading or having a normal day.) I’m going to halve the dose tomorrow and see what happens. Edited to add: It is listed as a side effect, even though verapamil is sometimes prescribed for headaches.

@MikeO, I hope the insulin helps. Do you use the pen on your thigh? I admire your data collecting. I need to get better at that.

I’ve now tried a couple of other vasodilators but no success. My blood pressure is down to a nice healthy level tho’, so that’s been good. No drops below optimal or dizziness. Just trouble with side effects. Next to try is verapamil. I am hopeful about this one because Dr Novak mentions it in his textbook in one of the OCHOS case studies, and I know some folks here take it with some success. I know that’s silly because we are all different but I have my fingers crossed!