Calcium-channel blocker might be helping

[Sarah Tee]

@Pistol, I don’t know what to do. Every time in the past few years that I have persisted with medications that weren’t working or had difficult side effects, the situation didn’t improve and eventually I stopped them. But those were all different types of medications to now. Some of the diltiazem side effects did go away but I would like to go out and about or even go into the garden without having to urgently run to the loo.

@MikeO, I’m really wishing I had one of those Stat gadgets now (I know they aren’t out yet). It would make it easy to see what my blood flow was doing and where to go with dosing. Especially in the afternoons, when I always have a slump, which I would like to pre-empt.

Unfortunately Dr Novak hasn’t written much about treating OCHOS. All he says is that he uses calcium-channel blockers and, if they don’t work out, ACE inhibitors.

What do you both think about trying amlodipine again? It worked so well until I stopped sleeping. After no sleep for 48 hours, I got alarmed. I mean, I felt fine, but not sleeping at all for days is actually dangerous.

[Pistol]

9 hours ago, Sarah Tee said:

What do you both think about trying amlodipine again? It worked so well until I stopped sleeping. After no sleep for 48 hours, I got alarmed. I mean, I felt fine, but not sleeping at all for days is actually dangerous.

 

@Sarah Tee that depends what side effect is more bothersome to you - diarrhea or insomnia? Also - have you considered seeing your GI specialist about the GI issues you are having? There may be meds or dietary measures you could take to lessen the diarrhea. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[Sarah Tee]

@Pistol, the not sleeping with amlodipine wasn’t bothersome, but I was worried about the psychological effects. After three night with no sleep your judgment is compromised and any more than that you can start to hallucinate. Asked doctors, they had no idea whether it was safe to proceed, so thought I’d better stop.

I’d love to ask someone about the diarrhoea, but unfortunately, the j-pouch surgery I had is not common and I know more about it than most doctors. I don’t have a GI specialist, just my surgeon. I will wait and see if it clears up. The first step if it doesn’t is to try a low-residue diet, which I’m sure you know from your nursing days.

I just found out I have to turf my GP, not that she was that great anyway, but once again I am without a medical person to discuss things with.

[Sarah Tee]

Oh, I just remembered that the probable reason that CCBs cause insomnia is that they block calcium channels and researchers have found a calcium channel in the brain that is essential for one of the sleep stages. Block that, and you are staying awake, I guess.

[MikeO]

8 hours ago, Sarah Tee said:

Oh, I just remembered that the probable reason that CCBs cause insomnia is that they block calcium channels and researchers have found a calcium channel in the brain that is essential for one of the sleep stages. Block that, and you are staying awake, I guess.

By chance have you been tested for OSA?

[Sarah Tee]

No, haven’t had any sleep-related investigations.

I sometimes have trouble getting to sleep, but once asleep I am okay.

[Sarah Tee]

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!

[Sarah Tee]

@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.

[Pistol]

@Sarah Tee all I can tell you is that with all the different meds I have tried I would stay on them for a while, except for clonidine ( which made me deathly ill and I stopped it after five days ). Dysautonomia makes us very sensitive to stimuli, and meds are just that, so we need to give our unregulated bodies time to adjust to ANY new meds

[Sarah Tee]

@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 🙂

[Sarah Tee]

@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.

[Pistol]

1 hour ago, Sarah Tee said:

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.

Good job! I remember I had some headaches for the first few weeks on it too but the body adjusted. I always gave it a few weeks on a dose and once I felt fine I would go up in the tiniest increments and wait until I felt fine again. 

[Sarah Tee]

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

[Sarah Tee]

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.

[Sarah Tee]

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).

[Sarah Tee]

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.

[Pistol]

2 hours ago, Sarah Tee said:

Frightened that this has permanently affected my BP, which has never been this high, ever.

@Sarah Tee I am so sorry this is happening! I too had many bad experiences with certain medications and I know how scary this is! But I cannot imagine that it will permanently affect your BP. Whenever a medication caused side effects such as high BP etc I would slowly go off it. Most people suffering from autonomic dysfunction are highly sensitive to medications, and our already malfunctioning ANS may get triggered and respond in chaotic ways. It could be that the vasodilation caused by the medication triggers the ANS to compensate by constricting the vessels - hence the high BP. This would be called sympathetic overcompensation. 

I WOULD be concerned about your BP increase, especially since you have symptoms with it.

[Sarah Tee]

@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?

[MikeO]

@Sarah TeeSome folks with a autonomic dysfunction will have labile blood pressures. seeing that you return to normal is reassuring for me at least. i have seen in the past the harder that my Doc's tried to get my high numbers down the higher my (out and about) blood pressures became and sparked more whooshing (vasoconstriction) and more lows pressures when i would trend that way.

my current meds took me a good several months to normalize for me and my cardiologist is not overly concerned with some highs (just squeezed a 165/97) at our last meeting as he can see in the BP's that i provide that the meds are working (my average BP's are at goal 120-139). Good Luck!

Attached a sample blood pressure.

  

[Sarah Tee]

@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.

[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.

[Sarah Tee]

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.

[GasconAlex]

Use a pill minder app or just the timer on your phone. It's the only way I remember to take the pills at the correct time, my phone shakes at me at the proper times then every 10 minutes until I tell it I have taken them. 

Try being in a wheelchair to stop spontaneity. At least 48 hours notice to use the train (they refused once at 47 hours 15 minutes) and having to prepare itineraries to see if the station, buses and roads are accessible (in lots of places the taxis aren't an option either). Even going out for the evening or shopping is tricky.

[Sarah Tee]

@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.

[Sarah Tee]

Well, the saga of finding the right medication continues. I know it’s one you are all familiar with.

From tomorrow I will be adding hydralazine, a direct vasodilator, to my current small dose of candesartan.

This is because I have been unable to increase candesartan to a vaguely therapeutic dose without it causing low urine output.

(I have given up on CCBs and ACE inhibitors for now due to insomnia.)

If the hydralazine doesn’t work out, the next options are an alpha blocker or aliskiren (renin inhibitor).

If no luck with all that, it may be time to fork out major bucks to try nimodipine (calcium channel blocker that preferentially affects cerebral blood vessels).

Specialist was in a helpful mood today, considering the three new medications and a Doppler test with minimal resistance, so I didn’t go so far as to memtion nimodipine yet.

Don’t look a gift horse in the mouth!