Calcium-channel blocker might be helping

[Sarah Tee]

By chance I am trying a CCB for my high blood pressure. It hasn’t done anything for the blood pressure yet, but it seems to be helping my OI. The dreadful drained feeling of not enough blood to the head seems to be reduced.

I know several people here take diltiazem for their dysautonomia symptoms, and I also read in his textbook that Dr Peter Novak has used CCBs for OCHOS with success in some patients. So it wasn’t entirely by chance – my GP was prescribing BP tablets for me anyway and I suggested a CCB. Haha, sneaky!

(My high blood pressure appears to be unconnected to my OI, although nobody knows of course. The OI started 20 years ago, and the high BP started 5 years ago, back when I was at a healthy weight and more active than now. So it’s a bit of a mystery. Maybe just genetics, but I am going to ask my endocrinologist to screen me for Conn’s syndrome next month, just in case.)

Don’t want to jinx this, but will I be adding a calcium-channel blocker to the odd list of things that help me?

Other items on my list are:

• prednisolone 25mg per day (feel better while taking and partial remission for months after)
• IV albumin 4%, one 500mL bottle (wears off in about 24 hours).

Nobody wants to give me steroids (yet – waiting to see rheumatologist), and driving to the hospital to get the albumin just about negates the good effect. But swallowing a nice little BP tablet once a day would be cheap, easy, and approved by all!

Sorry for the essay. Feeling a bit wordy today, a bad habit of mine.

Will report back in a week.

[Sarah Tee]

Also, if this does work, I will be rubbing it in the face of my specialist who brushed aside my request for a CCB a year ago. I suppose I ought to do it nicely by buying him a copy of Dr Novak’s textbook!

Here is the (very brief) chapter summary:

Quote

CHAPTER 26.

Case 21: Orthostatic Cerebral Hypoperfusion Syndrome, Intermittent

https://doi.org/10.1093/med/9780190889227.003.0026

Published: March 2019

Abstract

The tilt test showed mild orthostatic cerebral hypoperfusion syndrome (OCHOS) with intermittent reduction in cerebral blood flow velocity. OCHOS is associated with reduced orthostatic cerebral blood flow velocity without orthostatic hypotension or arrhythmia. Calcium channel blockers may be helpful in OCHOS.

https://academic.oup.com/book/24760/chapter-abstract/188284693?redirectedFrom=fulltext

[Sarah Tee]

Good effects are continuing. I think I can be sure that the calcium-channel blocker is getting more blood to my head. As well as feeling less exhausted and drained, I look better in the face. Not feeling normal, unfortunately, but definitely feeling less miserable.

Am having a slightly rocky start with side effects, but am confident these can be overcome. There are several CCBs to try and I can experiemnt with the dosage.

The one I am trying now is amlodipine.

Have remembered hearing here about nimodipine, which acts specifically on blood vessels in the head, if I have it right.

Also remembered some here are taking diltiazem.

[MikeO]

43 minutes ago, Sarah Tee said:

Good effects are continuing. I think I can be sure that the calcium-channel blocker is getting more blood to my head. As well as feeling less exhausted and drained, I look better in the face. Not feeling normal, unfortunately, but definitely feeling less miserable.

Am having a slightly rocky start with side effects, but am confident these can be overcome. There are several CCBs to try and I can experiemnt with the dosage.

The one I am trying now is amlodipine.

Have remembered hearing here about nimodipine, which acts specifically on blood vessels in the head, if I have it right.

Also remembered some here are taking diltiazem.

Good to hear it seems to be helping. I take Amlodipine 5mg a day and have been fine with it, we did try a higher dose of 7.5mg but was a bit much for me. my cardio did consider diltiazem but went with amlodipine instead.

[Pistol]

@Sarah Tee when my specialist first prescribed diltiazem he chose it because it comes in low doses that can be divided over the day. I started with 1/2 of the lowest dose twice a day ( lowest dose is 30 mg ) and once we saw that I tolerated it he increased the dosage slowly over several months. Once I hit my optimal dose ( 180 mg ) he switched me to the extended release and I only take it once a day. Noteworthy is that in the fall ( september ), when the weather changes, my BP starts to creep up, so I increase the dosage to 240 mg, and I go back to 180 mg when spring comes. The months that I need to change dosage are always the same - September and may. 

[Sarah Tee]

@Pistol and @MikeO, thank you for the input.

I am taking a week’s break, and, if I’m back to “normal”, will try again at 2.5mg (of amlodipine). Or maybe 1.25 mg, if the tablets will divide into quarters without crumbling. And then slowly work my way up.

Will be onto specialist and GP to try diltiazem or other CCB if amlodipine doesn’t work out.

[Sarah Tee]

I didn’t wait a week, just long enough for the side effects to subside. I am now trying a lower dose of amlodipine. Seems okay so far. It does start to wear off later in the day, and if I overdo things or get stressful news I am symptomatic again. Sill, no swollen ankles or aching muscles, and insomnia is much less.

I think one tablet (5mg) is as high as I can go.

However I believe the effects add up over the first two weeks, as that is how long it takes to reach full effectiveness for your blood pressure. Also I read that, in an eight-week trial, people were reporting new onset of edema at longer times. So we will have to see what happens.

The ankle and foot swelling wasn’t just an aesthetic concern. My ankles and toes lost some of their range of motion, and the skin on my ankles got a bit sore and itchy from being stretched even if I avoided flexing them. And I wouldn’t have been able to wear normal shoes and socks.

I am noticing that I am eating less. One reason is that, instead of sitting on the couch and feeling miserable, I am pottering about. Another reason is that I don’t have the persistent feeling of low blood sugar all day (similar to “hitting the wall” for athletes). I don’t know whether feeling faint feels a lot like low blood sugar, or whether my brain was calling for more glucose because hypoperfusion must leave you low on oxygen and glucose. Anyway, if I don’t overdo things, it is fixed. Hurrah!

(I have normal blood sugar. For many years I thought I was having low blood sugar episodes because of this persistent feeling, which worsened an hour after meals, but testing at home and ordered by doctor showed otherwise.)

[MikeO]

@Sarah Teeglad to read that you are seeing some benefits from the amlodipine. Edema can happen with the higher doses usually when taking more than 5mg. i do get a little bit in my ankles but is mild (just sock marks) but has not been a show stopper. sure compression socks could help in the short term

Amlodipine does have a very long half life (30-50 hours) so take your time if you plan to titrate up. when i first starting taking it i swear it took me several weeks to see the benefits. Also the drug is slow to metabolize (8 hours or so) I take mine with my evening meds (hear this helps with the edema as well, just don't quote me).

Hope you can stick with this for a bit and is a fix for you. I would give it a month as long as any side effects are not too bad.

Keep us posted!

  

[Pistol]

1 hour ago, Sarah Tee said:

My ankles and toes lost some of their range of motion, and the skin on my ankles got a bit sore and itchy from being stretched even if I avoided flexing them.

@Sarah Tee Are you wearing compression hose? That may help with the edema

[Sarah Tee]

@Pistol, I tried compression a while ago and it didn’t work for me (now I know why I guess!) so I don’t have anything handy.

If it comes back, I will get some.

[Sarah Tee]

@MikeO, that’s all very helpful. Tried 2.5mg today because 5mg seems to be keeping me awake and had a bit of a crappy day. Even topping up with the other half later on didn’t help.

Suddenly worried it has stopped working. That seems to happen sometimes with medications in dysautonomia. I have had a couple of treatments that worked once, or for a day or two, then never again.

I suspect that sometimes when the ANS gets a push in the right direction it manages to revert to its wrong equilibrium.

Urgh, hope I am wrong!

 

[Sarah Tee]

@MikeO, I’m a bit slow today … You take it at bedtime? Hmm, that makes sense with the long time to metabolize. I will try that and see whether it lessens the insomnia.

I wouldn’t be worried about it at this early stage except I have a bunch of appointments in the next few weeks and I have got to be awake at the right time to get there.

If I had no appointments I would just ride it out until it settles down.

[Sarah Tee]

I have adjusted my time for taking the amlodipine to accommodate the peak time. Bit frustrating because I need 7.5 or even 10mg for my symptoms, but the side effects are holding me to 5mg or less. Sleep is still all over the place. I may need to try a different CCB.

Am actually feeling very flat emotionally. I should be feeling happy, or triumphant, or at least relieved that I finally have something that works and know that I have OCHOS. Instead I just feel blah, nothing. My dad, who is my biggest support, is the same.

I think we are both exhausted by how long this has taken. And what do I do with myself now? I’ve been sick for so long, what place is there for me in the world?

And I still don’t know how my specialist is going to react. If he doesn’t follow the evidence and my reasoning, I’m no further forward.

Sorry to be so down. I hope I bounce back. Getting “OCHOS” written in my medical file will help no doubt. Then I’ll get the t-shirt!

[MikeO]

@Sarah TeeSleep issues maybe just because your body is adjusting to something new (amlodipine). for me it normally takes a month to adjust to a new med.

I also urge caution with playing around with dosing with this med as it is not a fast acting drug so it needs to build up in your system.

In other words, it takes about 30 to 50 hours for your body to get rid of half of a dose of amlodipine. It usually takes about five half-lives for a drug to leave your system entirely. For amlodipine, this means the drug will stay in your system for about 10 days after your last dose. 

[Pistol]

5 hours ago, MikeO said:

I also urge caution with playing around with dosing with this med as it is not a fast acting drug so it needs to build up in your system.

@Sarah Tee I second @MikeO in this statement. Throughout my journey I have learned that we have to be PATIENT with any new meds, or even adjustments. Consider that we are trying to re-establish new ways for our ANS to work stable. This takes time. Switching from one med, or dosage, to another too rapidly defies the purpose of stabilizing an out-of-control ANS. Now - if there are serious side effects we should always stop the medication and seek emergency help, or call the prescribing physician. But after many years of trial-and-error with treatments for HPOTS I have learned that - for me - it is best to start low and slow, and give my body a fair chance to adjust. 

[Sarah Tee]

@MikeO, @Pistol, you are right. I wasn’t very clear – I haven’t tried all those doses, I was just speculating about what might work.

However, there’s been another development. I mentioned earlier in this thread that I was feeling rather flat emotionally. This got worse, but with occasional gales of tears without actually feeling sad. Combined with not sleeping at all a couple of nights (although weirdly not feeling tired).

Suddenly realised all this coincided with takin amlodipine.

Psychological side effects have been reported, so talked to doc on phone and agreed best to stop for now. Flat feeling wearing off, but good effects are sticking around. No horrid drained feeling in head.

Will regroup and see doc again in a week or two to discuss what to try next.

I can usually put up with physical side effects that may resolve, but I absolutely can’t stand “feeling weird” mentally/emotionally.

[MikeO]

@Sarah TeeSorry to hear amlodipine is not working out for you. I did get the sudden tears symptom with the higher doses of pyridostigmine

[Sarah Tee]

@MikeO, sorry to hear you had that too.

Have you read the Steve Martin short piece called “Side Effects”? It’s in his book of collected writing, “Pure Drivel”. I highly recommend the book and the audiobook.

Here’s him reading it: 

 

[Sarah Tee]

Just a small update. I have been trying diltiazem. No sleep or psychological/emotional effects. Quite a few niggling physical effects, but nothing I can’t ignore. But I wake up with my large muscles aching and feel like I have a hangover for about two hours and have trouble getting out of bed. After that wears off I can feel the diltiazem is helping.

This is at one tablet (60mg) at breakfast and one at lunch. I generally feel better in the evening regardless and we wanted to minimise any possible sleep disruption, so no dinnertime dose.

So it is helping my symptoms but not enough. I definitely need a higher dose at lunchtime to counteract my awful “afternoon slump”. That will come next week.

I have the feeling I will need a combination therapy as is often used in blood pressure, adding an ACE inhibitor or ARB to a CCB.

On with the trial and error … !

[MikeO]

@Sarah Teehave you been keeping an eye on your blood pressures especially when increasing meds doses. Also ACE inhibitor are effective but one side affect is the "lisinopril" cough which some folks get and some don't. personally i can't take either an ACE or ARB without a allergic reaction which are mild but annoying.

As always never know how a drug will work for you unless one tries.

Good Luck.

[Sarah Tee]

@MikeO, yes, I’ve been keeping a log. My BP has come down slightly, which is good. It’s still above the recommended range. Going very slowly with the dosage increases.

I have had a very slight cough with the diltiazem. Not bothersome yet but I will watch it.

I will keep at it!

[Sarah Tee]

Diltiazem seems to be causing me short but unpleasant bouts of nausea and diarrhoea, during which my systolic goes up, as does my heart rate. But the diarrhoea and feeling hot and sick is the worst bit.

If I’m going to resume everyday activities out and about, I don’t want to be worrying about running to the loo. Did enough of that when I had ulcerative colitis.

So, back to the doc for the next option.

Diltiazem can go in the maybe pile – if it turns out the diarrhoea was from something else, I can always give it another try down the track.

[MikeO]

2 hours ago, Sarah Tee said:

Diltiazem seems to be causing me short but unpleasant bouts of nausea and diarrhoea, during which my systolic goes up, as does my heart rate. But the diarrhoea and feeling hot and sick is the worst bit.

If I’m going to resume everyday activities out and about, I don’t want to be worrying about running to the loo. Did enough of that when I had ulcerative colitis.

So, back to the doc for the next option.

Diltiazem can go in the maybe pile – if it turns out the diarrhoea was from something else, I can always give it another try down the track.

so sorry to hear this. I have had some not so good go with meds but not with a CCB or beta-blocker. I have been put on plavix and ranolazine that caused some nausea and diarrhea but passed a month later as i got use to the meds. systolic bp will go up when a bit stressed. if you were to look at my blood pressures you would be amazed. so a few bad squeezes may not be concerning.

Over the years i learned when to bail on a drug. "lisinopril cough" is one. breaking out in hives and tea like urine is one more (ARB meds). GI drugs like metformin (severe cramping) is one more. Pyridostigmine is one more but apparently i have a love hate relationship with the med so i am back on a low dose that i can handle.

It's not out of the norm for dysautonomia folks to take several weeks to adjust to meds (has been my experience as well) and GI disruptions are common also.

and to be honest i do not even ask or look up side effects with a new med or stress over them but just let them happen if they do occur (out of sight out of mind) and if i run into issues report them and then act 

Good luck   

[Sarah Tee]

@MikeO, good advice. I find it hard to know when a side effect is a “deal breaker” and when you should persevere.

If the side effect is very severe or could do permanent damage, the decision to stop (with your doctor’s input/supervision) is easy.

But what if it just makes you feel blah? Should you put up with that and try to wait it out?

Some of the other diltiazem side effects did go away after a fortnight, but I felt like I couldn’t put up with nausea and diarrhoea. Anyway, I am putting diltiazem in the “maybe” pile.

I have done that before with medications, and, with my specialist’s okay, revisited them.

I do only look at the side effects list after something new crops up and then persists for several days.

For now I’m having a short break from medications. See if that reveals anything, then get back to it!

 

 

 

 

[Pistol]

@MikeO @Sarah Tee Over the years I had to try most of the drugs recommended in the treatment of POTS. As we all know - dysautonomia comes with a high sensitivity to meds in general, so it is always risky business when we try new drugs. I have learned to listen to my body and also to weigh a medications benefits vs side effects - if it keeps me upright and prevents me from passing out, if it increases my quality of life, if it allows me to go about my business like a "normal" person then its a GO! 

Sarah, I know you have GI issues that make you more prone to unpleasant side effects. Always weigh the pros against the cons with any med - over the years I have learned that consistency is key. Switching/stopping/changing medications - for me - triggers symptoms, so I stay the course and have found my magic combo. I found that my body adjusts with time to meds if I am patient and allow my body time to adjust. Be well!