K.B.Fante

Negative reaction to caffeine

22 posts in this topic

Does anybody else have really bad reactions to caffeine?

I know many of us here have hypersensitivity to substances, but for me caffeine is a whole different subject. Even very small amounts of caffeine completely destroy me. And I'm not even talking coffee. In the past I've eaten small amounts of dark chocolate, which has caffeine, but I'm at the point where I'm just gonna totally go without chocolate altogether because of how crazy it makes me feel.

For example, I had a small piece of dark chocolate two days ago and I still feel the effects. But it's crazy because it's not just as if my symptoms worsen -- they do, but it's more than that. I sorta feel psychotic, a bit out of control, very unstable mentally, and I absolutely obsess over my symptoms all day long and become melodramatically negative about everything in my life, but especially HPPD. I guess I haven't done other drugs since getting HPPD so I don't know how I would react, but man caffeine really does a number on me. 

 

0

Share this post


Link to post
Share on other sites

Yea, caffiene kills me... Massive, massive anxiety from even small amounts (though never experienced a reaction from dark chocolate, maybe the brand I buy doesn;t have caffeine)

0

Share this post


Link to post
Share on other sites

Caffeine makes my vs worse within an hour and it takes a whole day for it to go back to its previous state .But chocolate has no impact on it .

I understand how u feel vs/hppd drives one nuts . This song best describes it :

Sometimes u have to listen to sad songs and cry ur heart out . My music taste has changed so much ever since I got vs . It's as if this disease changes ur entire being ...

U mentioned in another post that u've recovered a lot in the past 2 years so every time u get a break down focus on the fact that ur condition has improved and the caffeine effect and/or anxiety will hopefully wear off . What helped me was drinking a lot of water and detox tea and eating a lot of fruit and vegetables after I noticed that coffee was worsening my symptoms. 

0

Share this post


Link to post
Share on other sites
14 minutes ago, SaraSara said:

U mentioned in another post that u've recovered a lot in the past 2 years so every time u get a break down focus on the fact that ur condition has improved and the caffeine effect and/or anxiety will hopefully wear off . What helped me was drinking a lot of water and detox tea and eating a lot of fruit and vegetables after I noticed that coffee was worsening my symptoms. 

This is what I find so interesting about it. Normally, even though I still have most of many of my HPPD symptoms and even though I know it's gonna take a while before I'm completely healed, I'm OK knowing this because I've already made so much progress and I'm finally in a good place with my condition. I also generally have no problem ignoring my symptoms most of the day. But when I have caffeine it's like my entire perception changes, my personality, everything, and all I do all day long is obsess over my symptoms and how I still have HPPD after two years. Again, it's not just that my symptoms appear to worsen, it's a total transformation of my psyche and perception, which I find fascinating considering there are people out there who can drink two cups of coffee and fall asleep an hour later, wake up refreshed and feel no change in their personality whatsoever. 

The article above mentions how caffeine essentially binds to adenosine receptors, therefore preventing the those calming neurotransmitter byproducts from permeating the brain and allowing glutamate and dopamine to run wild. Clearly there's some sort of connection there, but is it due to the prevention of adenosine -- which has an inhibitory effect on the central nervous system -- or the increase in availability of glutamate and dopamine which have the opposite effect? 

0

Share this post


Link to post
Share on other sites

I feel like that pretty much all day every day with or without caffeine. After the panic attacks my thought processes changed. Even after a year and a half I don't really know what to do with myself without drugs.

Caffeine doesn't have that much effect on my hppd. I drank a latte every day for a week straight not too long ago and all it did was improve my focus and concentration.

0

Share this post


Link to post
Share on other sites

U know what I find so weird ? Vs and hppd patients are suffering a lot but most are not willing to donate money into research. Many keep saying; 'oh we will never find a cure' but if u keep thinking like that nothing will ever be solved .

take this rare disease for example; 

https://www.technologyreview.com/s/603832/determined-parents-are-moving-the-needle-on-gene-therapy/

through active patient donations they're close to a cure !

or this one :

https://www.hippocraticpost.com/innovation/gene-therapy-nervous-system-disorders/ 

David Kozin wanted to dedicate his time completely to find a cure for hppd :

https://m.facebook.com/HPPDonline/posts/606793636072012 

His strategy makes sense and is achievable if ppl become more active and start making donations! once I get a new job I'm willing to donate if this plan ever goes through! 

In the meantime we can all perhaps start donating money to Dr Goadsby's visual snow research?

Rare diseases can be cured if proper research is conducted and for that we all need to donate few pounds , euros or dollars a month .

Is neurogroup run by David or someone else ? I read somewhere that they were going to start research but that was a while back and I haven't seen them posting any updates about research ect . 

Seriously ppl we need to take action and push for research! Push for a cure ! Simply talking about our symptoms or hypothesising about a possible cure isn't gonna take us anywhere.

1

Share this post


Link to post
Share on other sites

Very true Sara. I've thought about this a lot. A big reason why there's not a stronger push to discover treatment or even a cure for HPPD is due to lack of awareness. I know one member (hope1, I believe) set up a website recently to try and push funding and awareness but I'm not sure if he got very far. 

Here's an interesting news story I heard the other day on the radio: http://kuer.org/post/university-researchers-take-step-forward-treating-neurological-diseases#stream/0

Essentially the "Ice Bucket Challenge" from a few years ago that went viral and helped raised millions for ALS research actually had a huge impact to the point where scientists are closing in on a possible cure. The same could be done for HPPD or any other disorder, it just takes some effort! 

0

Share this post


Link to post
Share on other sites

Yes I read that they are entering pre clinical gene therapy testing for ALS but I didn't know that they raised money via the ice bucket challenge. I thought the research was funded by the NIH .

ALS is well known though . Some celebrities such as Stephen Hawkins have it and Hollywood has made some movies about this disease. I don't think Hollywood is going to make a movie about hppd but Jen Ambrose's visual snow story has a lot of potential. However before she can start talking to the media Visual snow syndrome needs to get recognised which is what Dr Goadsby's main aim is at the moment ( that's why currently we have to donate money to his visual snow syndrome research . It's step 1.) After that they can even try to get funding and research collaborators from migraine trust( as palinopsia and some other vs symptoms seem to be related to migraine ) and they can try to work with tinnitus researchers as well ( those who focus on chronic brain generated tinnitus and not acute inner ear tinnitus such as Auris Medical) . 

One important thing that vs and hppd patients forget is the fact that even if u have a mild version this thing can get worse any second and end up disabling u . I'm not on fb ever since I got vs but those of u who are can try to communicate on the vs group and remind ppl that this is a serious disease and we need to support research as much as we can .

vs can't kill u physically but it can definitely kill u mentally(which is worse because ur gonna get tortured 24/7 for the next 50 decades to come) so instead of spending our money on useless benzo's and poisonous ssri's we should try to donate money and push for research! 

 

 

Edited by SaraSara
0

Share this post


Link to post
Share on other sites

I guess I was just repeating what I heard on the radio. The challenge raised over $100 million in the U.S. so I imagine all that money has done something to help get research where it's at today with all their new breakthroughs. 

I didn't realize Visual Snow Syndrome had so many overlapping symptoms as HPPD. I always just thought it was snow and that was it, but reading Jen Ambrose's Go Fund Me page she even mentions depersonalization-derealization symptoms. Clearly there's a connection between VSS, HPPD and DP-DR. They're all basically a list of the same overlapping symptoms with variances depending on severity and drug use. Therefore any research into any one of these conditions will likely prove beneficial to the others. 

On a side note, the visual snow study Ambrose links to at one point mentions how there's noticeable hypermetabolism in the lingual gyrus and cerebellum -- in fact, those are the only differences they note when compared to the control group. Hypermetabolism is often the result of injury and the cerebellum is particularly lined with Purkinje cells which are GABA-related neurons (and in a roundabout way we're again back to GABA). The study also mentions how cerebellar disease is linked to difficulty with depth perception and vertigo that can be caused by "infarct," which is a small localized area of dead tissue due to loss of blood supply.

I guess I just find this interesting because my poor depth perception is probably the most severe of all my HPPD symptoms and the neurologist I saw a few months ago also mentioned I had symptoms of a stroke. When I was on the acid that gave me HPPD I distinctly remember the feeling of being on the verge of a bad trip, being completely overcome by a sense of childhood fear and feeling a sudden jolt as if I were being sucked to the back of my mind. It was the weirdest feeling ever, but it only lasted about 10 minutes or so and then I was able to come out of it. Nevertheless, I've since been convinced it was that 10 minutes where I contracted HPPD, I'm just not sure how or what happened. But given all the connections to strokes I keep coming across, knowing how bloodflow in the brain changes during hallucinogenic drug use and the role anxiety and nutrition plays in brain health (I had terrible anxiety and diet in the months leading up to HPPD), I don't think it's far fetched to imagine a temporary loss of bloodflow could have caused brain damage -- at least in my case. 

Edited by K.B.Fante
0

Share this post


Link to post
Share on other sites

My mRI showed no signs of infarction. I'll upload it when I get back on my laptop.

I think my case may be due more to electrical activity than anything else. 

0

Share this post


Link to post
Share on other sites

I think that Visual snow syndrome is basically the same as hppd but they're triggered in different ways . One is drug induced the other isn't although many vs sufferers ( such as myself ) developed vs after ssri withdrawal ( I personally think ssri induced vs is more like hppd due to serotonin ect ).

I read about the PET study and hyper metabolism but the researchers do not mention that we're dealing with neuronal death .

This is an interview with Dr Goadsby:

http://www.bbc.co.uk/programmes/b0735q9m

This is one of his colleagues:

http://farooqmaniyar.com/visual-snow

They're both basically saying:

'The cause of this condition is unknown. Our group used special scans called FDG-PET which looks at the function of the brain2. Comparing visual snow patients with controls, we found increased metabolism (function) in a part of the brain (called occipital area – at the back of the brain). This area is called the lingual gyrus which is one of the additional areas (supplementing the main visual area) that interprets vision. Therefore it is possible that these symptoms are associated with increased activity of stimulating areas or decreased activity in the inhibitory areas along the visual pathway or areas modulating the pathway.'

I don't know much about neuroscience so I don't know whether disinhibition or hyperactivity ect can be caused by neuronal death or some sort of GABA chemical imbalance.

I'm really hoping that it's not neuronal death because stem cell therapy is still in its infancy. It will take at least another decade for it to work properly and be available in hospitals. 

I'm more hoping that something such as gene therapy can fix this . Just one injection in the brain to fix the genetic mutation and chemical imbalance. 

According to scientists most rare diseases are caused by one or few genetic mutations which is why gene therapy is having success with these diseases ( such as the ones I mentioned in my previous post ) . Whether drug induced visual snow or idiopathic , we all had a genetic predisposition to this nightmare it's just that in hppd patients this probably could have been avoided if we had not taken any drugs or antidepressants . Our brains could not handle these substances unlike most other ppl .

Visual snow syndrome is a strange disease , some get it out of nowhere, some get it after a sudden migraine aura and some get it from drugs and antidepressants. It's as if the gene is there waiting to get triggered. It is possible that many other ppl have this gene but theirs never gets triggered due to healthy lifestyle or other environmental factors. 

Dr Goadsby's team are doing Fmri scans soon , hopefully that will clarify things a bit more.

As for depth perception - maybe it's because the snow masks ur vision a lot ? I have it at night because the snow is worse in the dark . 

Vertigo - I've always had vertigo from time to time and many other migraine sufferers have it as well ( I've been having migraines since I was a teenager ) .

Either way ,if everyone starts supporting Dr Goadsby's visual snow research we can all benefit from it since the symptoms are the same . 

One member here ( Gustav I think ) had an appointment with Dr Goadsby . He probably knows more than the rest of us.

0

Share this post


Link to post
Share on other sites
5 hours ago, SaraSara said:

Visual snow syndrome is a strange disease , some get it out of nowhere, some get it after a sudden migraine aura and some get it from drugs and antidepressants. It's as if the gene is there waiting to get triggered. It is possible that many other ppl have this gene but theirs never gets triggered due to healthy lifestyle or other environmental factors. 

This is the thing: Whether you have Visual Snow Syndrome, HPPD, Depersonalization or any other cognitive disorder with similar symptoms, it's abundantly clear these disorders all overlap with many shared experiences and yet each have different ways of arriving at these conditions. HPPD is obviously triggered by hallucinogens but many people with DP are triggered by weed or panic attacks while some people are simply born with Visual Snow -- and yet the symptoms are the same. Just in terms of HPPD, it's worth noting people end up here after taking all sorts of different drugs that have different effects on different brain regions and neurotransmitters, and yet again they share the same symptoms. If HPPD was exclusively the result of some sort of serotonin dysfunction then why do people who take benzos (GABA) amphetamines (dopamine, norepinephrine) ketamine (NMDA) and pot (cannabinoids) also end up with the same symptoms? 

Genes play a role in everything, but then again so does your environment. For people who seem to be born with this condition perhaps, as you suggest, there's a genetic disposition but what about those who take hundreds of drugs before getting the same set of symptoms? If it was just genetic they would have gotten HPPD from the very start, no?

0

Share this post


Link to post
Share on other sites

I honestly don't know . I'm not qualified to answer these questions but maybe benzo's , ssri's , lsd , xct ect all mess up with our receptors , synapses ect which damages the neurons or changes the way they function. Even so , our genes allow this damage/change . Majority of ppl don't end up in this mess . Hppd/vs is extremely rare or else it would have had attention from many academics ages ago.

I think those who get it after heavy drug use probably have stronger genes but not strong/correct enough which eventually leads to damage/change(or death) in neuronal function . Whatever it is there probably is a common pathway and genetics play a huge role so we might need a combination of drug and gene therapy to reverse the visuals or a combination of gene and stem cell therapy.

If the visual symptoms totally disappear dp/dr will go away too . But I don't know how or why some ppl have dp/dr without visual snow. I guess their case is more psychiatric and not neurological. Whereas in our case the psychological problems are brought on by the visual disturbances.

 I've never had dp/dr but vs is making me miserable. I had never experienced depression or anxiety until I got this horrible disease. Looking back I really regret that I took ssri's simply because I was down due to a messy relationship. I thought I was depressed but now I know I wasn't. It was just a normal phase .

I really believe that if hppd and visual snow patients unite and start making monthly donations we will understand this disease and get closer to finding a cure . Dividing into different groups isn't a good idea at this stage . Usually researchers start with a common definition and after that they divide them into sub groups such as in epilepsy. 

A cure will only come if we fight together and get this disease officially recognised!

Edited by SaraSara
1

Share this post


Link to post
Share on other sites

Cafeine, especially in the morning, makes my visuals a lot more noticeable.  It also gives me a tripping feeling in the center of my body.  If I consume caffeine in the afternoon it puts me to sleep.  No explaining it, just is.

0

Share this post


Link to post
Share on other sites

The problem with ssri's is that doctors keep claiming they're safe and that they cause no permanent damage. Unfortunately I trusted my gp and didn't look it up on the internet:( 

In my opinion ssri's are just as bad as cigarettes . There are ppl who have smoked for 50 years and they're fine and then u have someone who only smoked few years and ended up with cancer. I guess it's the same with ssri's causing visual snow , palinopsia, floaters or any other damage . Again depending on your genes .

0

Share this post


Link to post
Share on other sites

Yeah caffeine fucks me over. One day I had Starbucks, when I got out I could see 3-4 layers of the street one over the other along with the street lights. It really freaked me out. Drinking coke, Pepsi etc also increases my symtoms and like Mad doc it puts me to sleep too. But at lower dosages it increases the symptoms very slightly - which is why I am able to drink green tea.

I wonder if caffeine at low dosages too might be hindering the recovery process? 

0

Share this post


Link to post
Share on other sites

I used to drink like 4-5 cups a day with liquid creamer. I was on a constant caffeine and sugar high for most of my adult life. Giving it up has been one of the hardest things I've had to do. I just have no motivation to do anything productive now.

0

Share this post


Link to post
Share on other sites
12 hours ago, Kraffay said:

Yeah caffeine fucks me over. One day I had Starbucks, when I got out I could see 3-4 layers of the street one over the other along with the street lights. It really freaked me out. Drinking coke, Pepsi etc also increases my symtoms and like Mad doc it puts me to sleep too. But at lower dosages it increases the symptoms very slightly - which is why I am able to drink green tea.

I wonder if caffeine at low dosages too might be hindering the recovery process? 

Sugar does the same to me. It used to give me absolutely horrific brain fog but ever since cleaning up my diet and eliminating excess sugar my brain fog has almost entirely disappeared. I've been eating lots of fruit lately and have noticed my body is not handling it well at all. Though I don't have brain fog anymore I'm really lethargic in the morning after I eat and I almost fall asleep during the day afterwords. Sugar doesn't increase my visual symptoms but what little psychological symptoms I have seem to get exacerbated quite a bit, which is the same thing that happens when I ingest caffeine. 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now