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  • BDD Moderators: Keif’ Richards | negrogesic

Misc Flunarizine for Cluster headaches

pally pete

Bluelighter
Joined
Feb 21, 2010
Messages
2,428
Hello all,

I have just been prescribed Flunarizine - 5 mg at night for 2 weeks, and then increase to 10 mg per night for the next 3 months... My Neurologist prescribed it to me as a prophylactic for cluster headaches.

From what I have read, there is no evidence that it will help cluster headaches (although it is indicated as being a good prophylactic for migraines) I am very concerned as I hear that it is contraindicted in people who suffer with depression. Unfortunately I happen to suffer with crippling depression, severe social anxiety, with agoraphobia and suicidal/homicidal ideation.

Does anybody else have experience with this medication? Does anybody use any other medications that they consider useful? I live in the UK... I mentioned Verapamil to my neurologist be he dismissed it...

I must add that up to now my neurologist has tried Amitriptyline, Duloxetine, Carbamazepine, Phenytoin, Sodium Valproate. All of which were either useless, or I couldn't tolerate them.

Does anybody else suffer cluster headaches? If you do then you will understand how desperate I am for something to help prevent/reduce my cluster attacks..

I currently have to use Sumatriptan subcutaneous injections as an abortative.

Thanks.
 
I was told at one hospital at an E.R. that there is actually nothing you can do for cluster headaches.

I think stress and weaning from medication can trigger them or cause a cluster headache to happen.

I tried not to be stressed too much and cut back on allot of medication and that got rid of it for me. It is a constant struggle, however, but helped me get rid of my headaches.

take care.

info for medication
" Flunarizine, sold under the brand name Sibelium among others, is a drug classified as a calcium antagonist which is used for various indications. It is not available by prescription in the United States or Japan. The drug was discovered at Janssen Pharmaceutica (R14950) in 1968.

Flunarizine is effective in the prophylaxis of migrain, occlusive perripheralmvascular disease, vertigo of central and peripheral origin, and as an add-on in the treatment of epilepsy where its effect is weak and not recommended. It has been shown to significantly reduce headache frequency and severity in both adults and children.

Flunarizine is contraindicated patients with depression, in the acute phase of a stroke, and in patients with extrapyramidal symptoms or Parkinson's disease. It is also contraindicated in hypotension, heart failure and arrhythmia."
 
I would mention again to your dr and say you’re worried about the side effects. Usually it’s put on there to cover their backs and it might not affect you in that way at all. If you’re going in with your eyes open then you can stop it if it’s cause horrid side effects.

Sumatriptan comes in tablet form also but it does take a good while to kick in. There’s another medication called Rizatriptan which acts much fast than sumatriptan and I think is much better for cluster/migraine headaches. It does come with a warning about depression being a side effect but tbh most of those type of meds do.
 
I would mention again to your dr and say you’re worried about the side effects. Usually it’s put on there to cover their backs and it might not affect you in that way at all. If you’re going in with your eyes open then you can stop it if it’s cause horrid side effects.

Sumatriptan comes in tablet form also but it does take a good while to kick in. There’s another medication called Rizatriptan which acts much fast than sumatriptan and I think is much better for cluster/migraine headaches. It does come with a warning about depression being a side effect but tbh most of those type of meds do.
Thanks.

But Sumatriptan injection acts much quicker than either oral Sumatriptan or them dissolvable Rizatriptan wafers.

My neurologist literally admitted that he's ran out of options as far as possible prophylactics are concerned... And he's just throwing anything at me that has benefits for other types of neuropathic pain/headache reducing properties/trigeminal nerve activity.. although nothing proven for cluster headache prevention :( I'm desperate, the pain is on another level! Suicidal pain.

The only proven abortatives are the Subcutaneous Sumatriptan injections which I currently use (Although I have to literally beg for them to be prescribed - my guess is due to there high cost...?) And high flow oxygen inhalation for 15 minutes or so..

Copy n pasted " Oxygen is one of the safest ways to treat cluster headache. You need to breathe the oxygen in at a rate of between 7 and 12 litres per minute. The treatment usually starts to work within 15 to 20 minute. For some people the attack is delayed rather than stopped altogether. "
I was told at one hospital at an E.R. that there is actually nothing you can do for cluster headaches.

I think stress and weaning from medication can trigger them or cause a cluster headache to happen.

I tried not to be stressed too much and cut back on allot of medication and that got rid of it for me. It is a constant struggle, however, but helped me get rid of my headaches.

take care.

info for medication
" Flunarizine, sold under the brand name Sibelium among others, is a drug classified as a calcium antagonist which is used for various indications. It is not available by prescription in the United States or Japan. The drug was discovered at Janssen Pharmaceutica (R14950) in 1968.

Flunarizine is effective in the prophylaxis of migrain, occlusive perripheralmvascular disease, vertigo of central and peripheral origin, and as an add-on in the treatment of epilepsy where its effect is weak and not recommended. It has been shown to significantly reduce headache frequency and severity in both adults and children.

Flunarizine is contraindicated patients with depression, in the acute phase of a stroke, and in patients with extrapyramidal symptoms or Parkinson's disease. It is also contraindicated in hypotension, heart failure and arrhythmia."
That's an interesting point. I'm always highly stressed due to non treatment for my Anxiety/panic problems... The psychiatrist has tried me on Citalopram, Sertraline, Venlafaxine, Vortioxetine, Mirtazapine, Risperidone, Quetiapine, Olanzapine.. Which have only made things worse IMO. Also due to the fact that no cluster headache prophylactic has been successful, while I am on these serotonergic medications - I'm unable to use my Sumatriptan injections due to there interaction :cautious:

I must add that I am prescribed, and taking 600 mg Pregabalin per day, and around 30 mg Diazepam per day - which is not prescribed. I've been battling to get off Benzos for around 10 year now.. Sometimes cold turkey (stupid idea! - please do not try this anybody who is reading)

I also try tapering - but due to the fact that my GP's are unwilling to prescribe me Benzos so I can reduce in the correct way, and my local drug treatment centre haven't got a clue when it comes to Benzo addiction/withdrawal etc... So I have to buy them online and unable to get lower denomination tablets (i.e 5 mg and 2 mg) I'm left to buy supposed 10 mg Diazepam which have who knows what in them???

So I'm basically always in a state of semi/full withdrawal. My previous heavy benzo abuse has been like I've really shot myself in the foot, as nobody is willing to help. My original theory when I first starting getting the Cluster headaches in March 2015 was stress/benzo withdrawal (as I'd just finished an abrupt taper) Although there is no concrete evidence to suggest that is the cause.

Finally, I must add that I have a condition called 'Parry-Romberg Syndrome - which has caused severe fat/muscle wastage on the left side of my head/face (same side I get the cluster headaches) which has also affected my trigeminal nerve... Headache specialsts theorise that the trigeminal nerve and/or a malfunction in the hypothalamus may possibly play a role in cluster headaches..

Anyway, thanks for taking the time to reply guys. I really appreciate it ;)
 
Ahhhhh, ok... so yeah, you’ve a lot of issues going on.

Definitely the withdrawal is playing a part in it. I’d really also be worried about what’s in those tablets, can you get them tested? Do you have anything to test them yourself? I’d be very wary taking some mystery pill.

The TMJ pain is probably what I would think is the cause of the cluster headaches. If it’s not controlled then I’m not surprised that you’re having the headaches. I’m assuming you’ve already been on gabapentin in the past?
 
No experience but it might work similar to verapamil.

Have you tried lithium? You might benefit from its ability to prevent cluster headaches and mood regulating properties, though it can be tricky to use.
 
I also try tapering - but due to the fact that my GP's are unwilling to prescribe me Benzos so I can reduce in the correct way, and my local drug treatment centre haven't got a clue when it comes to Benzo addiction/withdrawal etc... So I have to buy them online and unable to get lower denomination tablets (i.e 5 mg and 2 mg) I'm left to buy supposed 10 mg Diazepam which have who knows what in them???

Take the tablets and grind into a powder. Then buy an inexpensive milligram scale and determine the ratio of the powder to drug. For instance say that the gross weight is 100mg and drug strength is 10mg, you then have a powder that has 1mg of diazepam per 10mg of powder.

Get some empty capsules and at the beginning of each week fill the capsules with your desired dose, decreasing gradually. I'd recommend a very slight decrease, say 1mg a week to begin.
 
Ahhhhh, ok... so yeah, you’ve a lot of issues going on.

Definitely the withdrawal is playing a part in it. I’d really also be worried about what’s in those tablets, can you get them tested? Do you have anything to test them yourself? I’d be very wary taking some mystery pill.

The TMJ pain is probably what I would think is the cause of the cluster headaches. If it’s not controlled then I’m not surprised that you’re having the headaches. I’m assuming you’ve already been on gabapentin in the past?
I can buy a cheap home test kit.. but all that differentiates between is Diazepam, Flunitrazepam, Flurazepam, and Nitrazepam. Tbh, my main concern is the pills containing some of the other new/RC/rediscovered Thieno/Thienotriazolo/Triazolo/Benzos.. Like Etizolam, Flualprazolam, Flubromazolam, Deschloroetizolam etc etc..

I could send them to wedinos to get tested, but, at the moment they are not accepting samples due to staff shortages/Covid related issues etc..

Sorry to be dumb, but what do you mean by TMJ pain? Are you alluding to the Trigeminal nerve? I've never been on Gabapentin, but I have been on the Pregabalin for over 4 years solid now! I'm told/led to believe, that Pregabalin is superior to Gabapentin in almost all aspects...
 
No experience but it might work similar to verapamil.

Have you tried lithium? You might benefit from its ability to prevent cluster headaches and mood regulating properties, though it can be tricky to use.
Take the tablets and grind into a powder. Then buy an inexpensive milligram scale and determine the ratio of the powder to drug. For instance say that the gross weight is 100mg and drug strength is 10mg, you then have a powder that has 1mg of diazepam per 10mg of powder.

Get some empty capsules and at the beginning of each week fill the capsules with your desired dose, decreasing gradually. I'd recommend a very slight decrease, say 1mg a week to begin.
I've thought about Lithium.. but I'm not to keen on adding a medication like that to the list of what I've consumed. As you say, it can be a tricky one... And the Carbamazepine and Sodium Valproate which also have mood stabilising properties have made me feel absolutely awful! In fact, I ended up in hospital 6 days after starting Sodium Valproate as it was causing me severe Pancreas related pain - with elevated amylase readings :(

As for your suggestion about grinding the pills up and weighing the powder... I think that's a pretty good practical idea. It's definitely something I will look into doing.. At this moment I really don't have the cash to buy any scales, even cheap ones. But most importantly for me, I need to be sure that the pills are actually Diazepam and nothing else before I do that.

I'd just like to say thanks a lot to you all for your imput on this thread... I was really concerned that it would just actually get ignored. So massive respect to you guys :cool:
 
I can buy a cheap home test kit.. but all that differentiates between is Diazepam, Flunitrazepam, Flurazepam, and Nitrazepam. Tbh, my main concern is the pills containing some of the other new/RC/rediscovered Thieno/Thienotriazolo/Triazolo/Benzos.. Like Etizolam, Flualprazolam, Flubromazolam, Deschloroetizolam etc etc..

I could send them to wedinos to get tested, but, at the moment they are not accepting samples due to staff shortages/Covid related issues etc..

Sorry to be dumb, but what do you mean by TMJ pain? Are you alluding to the Trigeminal nerve? I've never been on Gabapentin, but I have been on the Pregabalin for over 4 years solid now! I'm told/led to believe, that Pregabalin is superior to Gabapentin in almost all aspects...
Yeah it’s a shame wedinos isn’t running at moment.

Sorry I didn’t explain it more in depth earlier. Basically, I would be wondering if you’ve an issue with your jaw, especially when you take into account your condition. If you have an issue with your temporomandibular joint (TMJ) then it will irritate the trigeminal nerve. It’s definitely something that should be investigated to rule out. Your jaw could be slipping. Would you have pain chewing/talking etc?

The reason I asked about gabapentin is because it’s strange to just jump to pregabalin. Usually a patient is started off gabapentin and when the max dose is reached then a switch to pregabalin is done. Some people respond better to gabapentin than pregabalin.

If you wanna have a wee google of TMJ disorders and see if it matches up with you. Then speak to your dr about treatment options.

A wee comfort measure for you which might help would be using a heat pad on your feet and ice pack on your head at the same time, lay down in a dark quiet room. It might not take the pain away completely but it should help ease it.

Im sorry you’re having a hard time. I’ve been having horrid migraines recently and it’s definitely not fun. I hope you manage to get something sorted.
 
First of all, I'm so sorry you have to suffer so much, I read in-depth about cluster headaches recently and it sounds like living hell. There is research and a lot of anecdotal evidence of using tryptamine psychedelics, mushrooms, or some of the analogues, to stop cluster headaches. There's a lot out there that I've read, and a lot of personal accounts. I'm sorry I can't you with your actual question, but you might want to look into it. People are using doses too low to trip, but something about them seems to stop cluster headaches and prevent them from happening. I think it's worth looking into, since you're so desperate. I've read of a lot of people telling their story about it, and it seems pretty worth a try.
 
I've thought about Lithium.. but I'm not to keen on adding a medication like that to the list of what I've consumed. As you say, it can be a tricky one... And the Carbamazepine and Sodium Valproate which also have mood stabilising properties have made me feel absolutely awful! In fact, I ended up in hospital 6 days after starting Sodium Valproate as it was causing me severe Pancreas related pain - with elevated amylase readings :(

As for your suggestion about grinding the pills up and weighing the powder... I think that's a pretty good practical idea. It's definitely something I will look into doing.. At this moment I really don't have the cash to buy any scales, even cheap ones. But most importantly for me, I need to be sure that the pills are actually Diazepam and nothing else before I do that.

I'd just like to say thanks a lot to you all for your imput on this thread... I was really concerned that it would just actually get ignored. So massive respect to you guys :cool:

Just FYI I would bet that the diazepam is real. They are rarely faked, especially these days.

The scale costs perhaps $25 id look into when you are ready to start tapering. If done slow enough it can be relatively painless. The worst part is going to 0mg usually.
 
I have to second the use of psychedelics..

I myself suffer from migraines that somewhat resemble clusters but not quite. They are so bad where I’ve had days of nothing but throwing up, crying the pains so bad, put a bullet in your head just to stop it kinda pain.

For me, when no other medication works, low dose DMT has been my savior. Or low dose mushrooms or 4-AcO-DMT. I can’t stress enough what a difference these have made in my life once I figured this out.

-GC
 
I have to second the use of psychedelics..

I myself suffer from migraines that somewhat resemble clusters but not quite. They are so bad where I’ve had days of nothing but throwing up, crying the pains so bad, put a bullet in your head just to stop it kinda pain.

For me, when no other medication works, low dose DMT has been my savior. Or low dose mushrooms or 4-AcO-DMT. I can’t stress enough what a difference these have made in my life once I figured this out.

-GC

Interesting. You take these in the midst of a migrane or as an occasional prophylactic? Not sure the latter would really work. I would imagine they function similarly to things like ergotamine.

Ive only had a migraine headache 5 times in my life. They were unique enough that i can count them on one hand. I loathe the people who equate a migrane headache to a generic headache, invariably women (although not always), "excuse me but i have like a really bad migrane headache right now". If said person really had a migraine they'd be half blind and nearly vomiting.

Migraines are bizarre. I remember my first migraine. I was in 7th grade in math class. All of a sudden out of the corner of my right eye appeared these floating geometrical shapes. Triangles mostly, semi transparent, like looking through a kaleidoscope. The some pain and nausea, enough for me to go to the nurses office and make a call to be picked up. It progressed to severe pain and moderate nausea and almost total temporary blindness. Its only happened 4 times since then. I pity the person who gets them often but ive heard the term (particularly among the fairer sex) thrown around indiscriminately.

Ive never had a cluster headache in my life.
 
Yeah it’s a shame wedinos isn’t running at moment.

Sorry I didn’t explain it more in depth earlier. Basically, I would be wondering if you’ve an issue with your jaw, especially when you take into account your condition. If you have an issue with your temporomandibular joint (TMJ) then it will irritate the trigeminal nerve. It’s definitely something that should be investigated to rule out. Your jaw could be slipping. Would you have pain chewing/talking etc?

The reason I asked about gabapentin is because it’s strange to just jump to pregabalin. Usually a patient is started off gabapentin and when the max dose is reached then a switch to pregabalin is done. Some people respond better to gabapentin than pregabalin.

If you wanna have a wee google of TMJ disorders and see if it matches up with you. Then speak to your dr about treatment options.

A wee comfort measure for you which might help would be using a heat pad on your feet and ice pack on your head at the same time, lay down in a dark quiet room. It might not take the pain away completely but it should help ease it.

Im sorry you’re having a hard time. I’ve been having horrid migraines recently and it’s definitely not fun. I hope you manage to get something sorted.
I've had several MRI/CT scans which have shown up nothing particularly out of the ordinary (which is usually the case with cluster headache sufferers) although due to the Parry-Romberg related fat/muscle wastage - my left jaw/lower set of teeth have concaved slighlty... So you may have a valid point. The problem is with Parry-Romberg syndrome being so rare, is that the professionals don't really have any concrete answers/evidence when I ask questions or research it. Cluster headaches are also not fully understood either.. Which adds to the frustration.

Also, cluster headaches are not really comparable to migraines when it comes to pain intensity. You can't lie down, you throw yourself about/roll about/rock back and forth/pray/speak/shout gibberish etc etc... I used to suffer migraines when I was younger, and I really do empathise with anybody who suffers with them. But, at there worst, cluster headaches really are an 11 on the pain chart.

Thanks for your imput/advice - I've had a read regarding TMJ disorders... A little bit of Wiki info on the Parry-Romberg syndrome here - Parry–Romberg syndrome - Wikipedia
First of all, I'm so sorry you have to suffer so much, I read in-depth about cluster headaches recently and it sounds like living hell. There is research and a lot of anecdotal evidence of using tryptamine psychedelics, mushrooms, or some of the analogues, to stop cluster headaches. There's a lot out there that I've read, and a lot of personal accounts. I'm sorry I can't you with your actual question, but you might want to look into it. People are using doses too low to trip, but something about them seems to stop cluster headaches and prevent them from happening. I think it's worth looking into, since you're so desperate. I've read of a lot of people telling their story about it, and it seems pretty worth a try.
Thanks. I'm really glad you've tried to educate yourself on cluster headaches.. As you are probably are due to your research - the medical community should come up with a different terminology, as the word 'headache' instantly devalue the severity. Exploding eye syndrome is slightly closer to the truth.

I tried taking a very low dose of Liberty caps last September which just made me feel awful! You know that feeling as if you're stuck in the 'come up' faze of MDMA... Where you sort of don't know what to do with yourself! Just rolling around, climbing the walls wanting it to go away. So, I think if I was to go down the pscheldelic route again, I'd probably just go for a full blown psychedelic trip dose of LSD/Shrooms.

I've never tried DMT though. But due to my fragile pschological state of mind I am extremely dubious about going down these routes. I must add that I had several traumatic 'bad trips' on LSD in my teens.

Just FYI I would bet that the diazepam is real. They are rarely faked, especially these days.

The scale costs perhaps $25 id look into when you are ready to start tapering. If done slow enough it can be relatively painless. The worst part is going to 0mg usually.
Check wedionos.org

You'd be surprised the amount of fakes still about... The problem with the pills I acquire that do most possibly contain Diazepam is that there is no idea of the actual amount of Diazepam in these pills.. They could contain anywhere from 1 mg up to 20 mg Diazepam (or another benzo) So this makes tapering almost impossible in reality.

Interesting. You take these in the midst of a migrane or as an occasional prophylactic? Not sure the latter would really work. I would imagine they function similarly to things like ergotamine.

Ive only had a migraine headache 5 times in my life. They were unique enough that i can count them on one hand. I loathe the people who equate a migrane headache to a generic headache, invariably women (although not always), "excuse me but i have like a really bad migrane headache right now". If said person really had a migraine they'd be half blind and nearly vomiting.

Migraines are bizarre. I remember my first migraine. I was in 7th grade in math class. All of a sudden out of the corner of my right eye appeared these floating geometrical shapes. Triangles mostly, semi transparent, like looking through a kaleidoscope. The some pain and nausea, enough for me to go to the nurses office and make a call to be picked up. It progressed to severe pain and moderate nausea and almost total temporary blindness. Its only happened 4 times since then. I pity the person who gets them often but ive heard the term (particularly among the fairer sex) thrown around indiscriminately.

Ive never had a cluster headache in my life.
Clusterbusters.org actually seem to lean towards the idea that Psilocin will not just help abort an attack, but will keep the clusters at bay for 6 months - 1 year.

I hope you never have to suffer a cluster headache. It really isn't something you would wish on your worst enemy. There are no words in the English dictionary to aptly describe them.

Thanks for your imput once again. That goes for everybody on this thread ;)
 
Interesting. You take these in the midst of a migrane or as an occasional prophylactic? Not sure the latter would really work. I would imagine they function similarly to things like ergotamine.

Ive only had a migraine headache 5 times in my life. They were unique enough that i can count them on one hand. I loathe the people who equate a migrane headache to a generic headache, invariably women (although not always), "excuse me but i have like a really bad migrane headache right now". If said person really had a migraine they'd be half blind and nearly vomiting.

Migraines are bizarre. I remember my first migraine. I was in 7th grade in math class. All of a sudden out of the corner of my right eye appeared these floating geometrical shapes. Triangles mostly, semi transparent, like looking through a kaleidoscope. The some pain and nausea, enough for me to go to the nurses office and make a call to be picked up. It progressed to severe pain and moderate nausea and almost total temporary blindness. Its only happened 4 times since then. I pity the person who gets them often but ive heard the term (particularly among the fairer sex) thrown around indiscriminately.

Ive never had a cluster headache in my life.

Yup I use in the midst of a migraine. Often times I’ll fall asleep either during the experience or immediately after, and wake up feeling a lot better. But even if I don’t fall asleep it still works 90% of the time.

Low dose is important cuz too high and the increase in blood pressure or whatever happens can make the headache worse before it gets better.

I too wouldn’t wish this shit on my worst enemy. I’ve had them last 4 days or so, can’t come out of the room for days cuz the lights too much. Can’t hold anything down, fun shit.

It seems there is a serotonin related component to migraine headaches from the reading I’ve done and tryptamines such as mushrooms and DMT modulate serotonin in some way beneficial to curing these migraines.

Also they do keep them away for weeks, sometimes months at a time. I’ve found diet is huge too though, if I eat wrong I pay dearly for it.

-GC
 
I have to second the use of psychedelics..

I myself suffer from migraines that somewhat resemble clusters but not quite. They are so bad where I’ve had days of nothing but throwing up, crying the pains so bad, put a bullet in your head just to stop it kinda pain.

For me, when no other medication works, low dose DMT has been my savior. Or low dose mushrooms or 4-AcO-DMT. I can’t stress enough what a difference these have made in my life once I figured this out.

-GC
I had a bit of a double coincidence today. My Neurologist rang me to say do not take the Flunarizine as he didn't know I suffered with severe depression (I don't what planet he's living on... as it's all over my medical notes going back years???) And I've spoke to him several times with regards to the SSRI's/SNRI's and other atypical antipsychotics that I'm prescribed to try and help with my anxiety & depression issues!

Anyways, after my appointment with him last week where I suggested Verapermil which he completely disimissed and prescribed me the Flunarizine. He now said that he was writing to my GP to recommend Verapermil due to the contraidication regarding the Flunarizine and depression???

I acknowledge the difficulty of health workers jobs - but many of them seems completely inept! :(

My friend happened to give me a 4-Aco-DMT pill last night (apparently 30 mg..) which I took today. So maybe that could keep the clusters at bay... Although without hopefully tempting fate.. my last cluster was 8 days ago... In reality I should have waited until my next cycle of clusters began and then I should have taken the 4-AcO-DMT to see if it had a direct effect (Abortative or prophylactic..?)

So fingers crossed they may have decided to go into remission for a while..
 
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Just one way to know if that 4-acetoxy-dmt pill was real was if you started tripping balls about 40 minutes after. That is a strong dose for most people. Starts getting pretty weird after 30mg.
 
Just one way to know if that 4-acetoxy-dmt pill was real was if you started tripping balls about 40 minutes after. That is a strong dose for most people. Starts getting pretty weird after 30mg.
I was trippin by 30 minutes in.

I've since been told/learnt/led to believe, that the 'White Mushroom - 4-AcO-DMT' pill was more likely 20-25 mg... But there's no way to be sure..

The trip felt visual for the first 2-3 hours, (trails, 3D type vision etc..) and it was extremely relaxing in nature. So much so that I spent most of the time lying down in bed snuggled up... And for some reason I felt that I may gain more insight by having my eyes closed. The C.E.V's were very sexual/erotic in nature.
 
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