Surprising amazing response to Cinnarizine (vasodilator)

Messages
44
Likes
108
Hello! I've decided to share my experience/discovery with you, as I find it interesting and maybe someone else might benefit from it. Also, it may provide further support to some theories that see involved the cerebral blood flow and other structural issues.

I listed all my symptoms in my introduction thread here. The very first symptoms I had on the onset of my illness were headache and a very bad nausea, but a kind of motion sickness nausea. During those days, I was travelling back to London from SE Asia, and when I was at Singapore Airport I decided to get an anti-nausea medicine as I was afraid that my ongoing nausea would get worse on the plane. The pharmacist gave me this drug, Stugeron (cinnarizine) and it worked instantly on the plane and I had a great flight.

Now, I've had this medicine next to my bed for the past six months, but had completely forgotten about it. I don't know why, the other day I woke up and I had a light bulb moment: I thought, if it worked so well that time, what would happen now? So I decided to try it and I took it after lunch. Within a couple of hours I started feeling something: do you know that tingling feeling in your hands, feet, fingers that you have when you pass from cold to warm? When you're outside in the cold and loose sensitivity in your extremities and then once you're back inside you feel the sensitivity coming back. Well, I felt that very same tingling in my extremities and felt as if life was coming back into my body. For a couple of hours, that pressure in my head and behind my eyes went away about 80%. My back still hurt (should really get an MRI for that), but I felt like my body was alive. Still weak and fatigued, but with life in it. That horrible feeling that I had/have of pounding heart and heavy chest, also lifted. Until Thursday I couldn't even sit down and eat without having difficulty breathing because of this chest heaviness. Now I can handle sitting for hours!

From Wikipedia: "Cinnarizine is an antihistamine and calcium channel blocker of the diphenylmethylpiperazine group. It is also known to promote cerebral blood flow, and so is used to treat cerebral apoplexy, post-trauma cerebral symptoms, and cerebral arteriosclerosis. However, it is more commonly prescribed for nausea and vomiting due to motion sickness or other sources such as chemotherapy, vertigo, or Ménière's disease."

What I found revealing I think, it's the fact that Cinnazirine is a calcium channel blocker and vasodilator. It makes sense. I've always suffered from migraines in my life, which sometimes caused really bad nausea and general sick feeling. Also I've always suffered a lot the pressure change on planes. After a flight, the migrane, which in itself was debilitating, would last until I went to sleep in the evening. My illness was triggered by the Dengue virus, which is a strong virus reported to have caused strokes, CNS vasculitis in addition to sometimes hemorrhagic fever in worst cases. My blood pressure since I'm sick is always between 130-150/70-90, edging between normal and slightly high, but sometimes a lot higher though. My HR doesn't go below 80. Vasodilators are used to lower BP.

Also, the fact that my lymphatic system is also congested (specially on my right side, considering lymph nodes swelling) makes me think of a circulatory problem on some level. Obviously whatever this is, it's creating some pressure in my head and this blocks the whole circulation in my body.

I have an echocardiogram with doppler of my heart on Tuesday and I will mention this discovery. Hopefully they will take it as a sign that something should be investigated. A dream would be an MRV prescription... But then I'd need a doctor who understands these issues...

My plan is to keep on taking Cinnazirine and also get it prescribed. As long as I take it, it makes me feel much better and keeps lots of symptoms at bay. I would have never discovered this if it wasn't for Asian prescription free pharmacies and a doctor would have never prescribed this drug to me at this stage, delaying the investigation by who knows how long.

I wonder if people have ever tried vasodilators, especially those with diagnosed transverse sinuses or jugular vein stenosis. It might help people addressing investigations and testing. If anyone has suggestions or thoughts on this, I'd be interested to hear!
 

Hip

Senior Member
Messages
13,057
Likes
24,256
Have you looked into nimodipine, a calcium channel blocker that several ME/CFS doctors prescribe for ME/CFS on account that it increases cerebral blood flow?

Dr David Mason Brown says nimodipine helps 20% of ME/CFS patients very quickly, and another 20% over six months.

The Mason Brown protocol begins with a quarter of tablet (7.5 mg) of nimodipine per day with food. Then slowly increase the dosage by a quarter of a 30 mg tablet each week, up to a maximum dose of four tablets per day (taken in divided doses).
 
Last edited:

Waverunner

Senior Member
Messages
1,050
Likes
1,004
That is interesting as vasoconstricters are prescribed for POTS which are the opposite of vasodilators. I wonder why the apparent contradiction?
I had the same question a few weeks ago. Vasoconstrictors, as their name implies, constrict vessels and thereby increase blood pressure. So when people have problems with blood pressure, like with POTS, this is one treatment option.

However, there is another side to it. A pipe with half the diameter of another pipe can only carry one fourth of the other pipe's volume.

When you decrease the diameter of vessels you also decrease the blood volume that can be pumped through these vessels. So some CFS patients may have enough blood pressure but the vessels are so narrowed that only suboptimal amounts of blood can pass through them. In these cases it may be better to vasolidate the vessels to increase their diameter and the possible blood volume.

I'm not sure if vessels can actually constrict so much that not enough blood passes but this would be a potential problem with vasoconstrictors of course.
 
Messages
44
Likes
108
Have you looked into nimodipine, a calcium channel blocker that several ME/CFS doctors prescribe for ME/CFS on account that it increases cerebral blood flow?

Dr David Mason Brown says nimodipine helps 20% of ME/CFS patients very quickly, and another 20% over six months.

The Mason Brown protocol begins with a quarter of tablet (7.5 mg) of nimodipine per day with food. Then slowly increase the dosage by a quarter of a 30 mg tablet each week, up to a maximum dose of four tablets per day (taken in divided doses).
Thank you, I didn't know about it and I've looked it up. It would be worth trying, however my doctor wouldn't prescribe it I think. Although, it did prescribe stugeron, based on my excellent feedback. He said that Stugeron it's commonly used for migraines and their prevention, and normally the treatment lasts months and in some cases to maintaining drops. The normal dose for Stugeron is three 25 mg pills per day, and I'm already feeling much better with only half a pill twice a day. I will up my doses and see what happens in the long term.

My friend is going to Indonesia in September, I will ask her to bring me some drugs like nipopidine to try!
 
Messages
44
Likes
108
@panckage @Waverunner
Yes, I thought about the contradiction between vasoconstriction and vasodilatation as well! I think that it's very interesting the fact that Stugeron is an H1 antihistamine. Which means that for some people the vasoconstriction could be the result of some sort of immune response. I can relate to this, as my skin has become extremely sensitive: it gets red super easily and I can no longer wear my earrings, my ears get red and itchy. Differently to many other patients, I don't have any food sensitivities, nor MCAS. I'm not sure, but maybe these type of problems are due to the H2 receptor, which I may not have any problem with.

That's why I hope that Stugeron will help with the residual symptoms, by hopefully suppressing this H1 reaction. But I'm really not sure, my theory about the way Stugeron is working for me keeps changing every hour.
 
Messages
44
Likes
108
I forgot to mention that while in some cases vasoconstriction is mediated by some sort of immune response, normally in POTS the vasodilation is the result of a malfunctioning of the ANS. So while being different problems, they may have similar simptons, respectively.
 

Waverunner

Senior Member
Messages
1,050
Likes
1,004
Well, this is difficult to explain.

When I go to bed and I felt dizzy/light-headed for most of the day, I don't feel like falling asleep but I feel like passing out.

As long as I'm awake in bed it's no problem, irrespective of duration but when I get tired I get this feeling of passing out. I don't know if certain ligaments or muscles relax in these phases so much that somehow the blood supply abates because something gets blocked but it feels anything but normal. I often get the same problems, but not as strong, when I take a nap during those days.

I have to force myself to stay awake for several hours in these situations because if I dont, I wake up with headaches and I'm dizzy/light-headed/confused for the next day as well. I'm not sure what is causing this. It feels like the blood supply to the brain or parts of the brain gets highly reduced.

This is why I'm looking into cerebral vasodilators like Cinnarizine.

Does anyone have an explanation for this passing out feeling or did anyone ever experience this symptom?
 
Messages
44
Likes
108
This is why I'm looking into cerebral vasodilators like Cinnarizine.

Does anyone have an explanation for this passing out feeling or did anyone ever experience this symptom?
I'm really not sure that I've experienced the same, but I have something similar in the sense that I just can't stand up for too long, or I'll get nauseated and weak. Similar to when you're about to pass out, but with more nausea than dizzyness. My best description is "I get motion sickness from walking" but without vomiting.
Is POTS your diagnoses? Do you have an idea on how your BP changes in these circumstances? I thought I had it, but now I think that the fact that I've responded to a vasodilation drug is quite surpring and weird. And by the way, I'm close to feeling normal with Cinnarizine and I think every one should give a try to this or a similar drug. It should be quite easy to get prescribed for, as it's an anti nausea/motion sickness medication.
 

Waverunner

Senior Member
Messages
1,050
Likes
1,004
@GloriaDG I will buy some Cinnarizine next week, I will be in a country where you don't need a prescription.

The passing out feeling is really weird. I also have POTS, where, when I stand longer periods of time, blood leaves my brain and I have to sit down otherwise I get presyncopes or syncopes. But this sleeping thing is quite different. It's more like anesthesia.

It's also weird that a vasolidator makes things better for you, despite having POTS. Maybe there are some issues with narrowed vessels. I'm really excited if it works for me, too.
 

vision blue

Senior Member
Messages
250
Likes
238
@Waverunner
I also get the feeling like i'm going to pass out when falling asleep. I've tried to describe this to others and they think i'm nuts. But its so hard to describe things, for all we know, we are using the same terms yet having different experiences (let alone mechanisms).

One reliable trigger for me is the evening after I get blood drawn, and the higher the amount of blood taken, the stronger more long lasting the reaction. If i try to explain this to phlemotmists, they assume i'm talking about vasavagal syncope from a blood draw and offer to have me lying down with feet up. I try to explain, no, its hours later when i lie down to sleep and they get puzzled looks.

will be curious to know how the vasodilater/h1 blocker works for you, I'm reluctant at this point to try more meds given my state has gotten too complex and i react badly to many meds . (CFS, sjogrens, dysautonomia, extreme tyramine senstivity, likely low MAO-A enzyme (not from meds), very likely MCAS, likely complex regional pain syndrome in shoulders, excess sympathetic ouflow, taurine wasting, high beta alanine). I feel like not even other zebras want to graze with me anymore..
 
Messages
44
Likes
108
The passing out feeling is really weird. I also have POTS, where, when I stand longer periods of time, blood leaves my brain and I have to sit down otherwise I get presyncopes or syncopes. But this sleeping thing is quite different. It's more like anesthesia.
No, I don't really experience this. It's weird, yeah. Well, I would say start slow with Cinnarizine, as we still don't know much about with this contradiction between dilation and constriction of vases in some POTS patients. Maybe start with half of a 25mg pill, and you should feel within a few hours if it works well on you or not. It's really fast acting. I hope it does!

To be honest, I haven't been officially diagnosed with POTS and I've only ever tried my HR with a wrist monitor, which now I think it's probably not the most accurate... But I do get the symptoms that I've mentioned earlier.
 

Waverunner

Senior Member
Messages
1,050
Likes
1,004
@vision blue Thanks for your comment that is very interesting. You are not alone with this symptom.

I cannot trace it back to blood drawings, however. In your case it could be a lack of blood then? I mean, the volume of blood drawings is very low normally but maybe you are so borderline that it has the respective effects on you.

And don't worry about your symptoms, if possible, I feel sorry for all of us. I could add a whole list of weird issues as well. It seems that the immune system gets completely out of balance. If this has to do with CCI or Chiari, the vegetative nervous system may be a key culprit.

@GloriaDG Thanks for the warning, I will be careful. I will take a low dose when I'm back home on Thursday, in case any side effects occur.
 
Messages
13
Likes
47
Hi @GloriaDG, just want to ask what medication you are taking for migraines as I suffer chronic migraines myself and I use amitriptyline but there seems to be interactions between using Cinnarizine and amitriptyline.

I also used to get constant light-headedness every time I stood up and jaw pain and tension, I also have rynhauds.
 
Messages
44
Likes
108
Hi @GloriaDG, just want to ask what medication you are taking for migraines as I suffer chronic migraines myself and I use amitriptyline but there seems to be interactions between using Cinnarizine and amitriptyline.

I also used to get constant light-headedness every time I stood up and jaw pain and tension, I also have rynhauds.
Hi, well, I've never really taken any medicine to prevent migraines, but I have occasionally taken Sumatriptan during migraines attacks and has worked wonders. But I'm not really taking any other medicine for migraines right now, so I don't know about drug interactions I'm afraid.
 

sb4

Senior Member
Messages
1,160
Likes
1,857
Location
United Kingdom
Found this on its Wikipedia page:
"Cinnarizine inhibits the flow of calcium into red blood cells, which increases the elasticity of the cell wall, thereby increasing their flexibility and making the blood less viscous."

I am going to give it a try and see if it helps with my heart issues.