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> Severe symptoms after years of suppressing tics (Tourette syndrome), Urgent help needed
UrgentHelp
post Jul 14, 2012, 09:11 AM
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I will keep this VERY summarized so that people will read it, but if you have any questions PLEASE ask me.

I have severe tourette syndrome and have been suppressing ALL my tics for 2 years straight which estimate to about 500,000 tics. I started developing VERY serious symptoms due to this from the moment I started doing it, but due to social issues (even in my home) I have kept suppressing them against my will even though it was VERY hard and painful.

First some of the symptoms (put severe behind every line):
-severe decrease of cognition: loss of memory (especially short term memory), unable to process information, vision problems, unable to read or understand language.
-Numbness of face
-Weakness of muscles
-coordination problems
-loss of emotions/thoughts
-sometimes pain in certain areas of the head or the right side of the face and ear
-Sudden "magnetic feeling" sharp pains in teeth
-Physical pain in neck, trapezius, pectoralis (this pain started after getting long shocks going from the blocked area to these areas and the physiotherapist confirmed it.)

Thing with a tic is, a fraction of a second before it manifests into a motor or vocal tic, there is a "brainwave sensation" (which I believe has to do with neurons, neurotransmitters/receptors etc.)

However, after suppressing tics for so long, the tic automatically becomes suppressed AFTER the "brainwave senstation", right before it manifests into a motor/vocal tic.
This brainwave is felt specifically in the right side of my brain and that specific area feels blocked, and clotted after the automatic suppression of the tics.
I can't stress enough on how feelable this blockage is. Infact, if I swallow (which pushes a bit towards the blockage), there is a relatively loud *KRAK* sound.
The more/stronger the brainwave-tic is, the more BLOCKED this area becomes, and the more LOUDER/PAINFUL the release of this "clot" becomes and the severer the symptoms become.

This *KRAK* sound is only heard when the act of swallowing causes the sudden release of the "blockage". Therefore, it's not there when the brainwave hasn't "filled' the blockage.
Note: the sound is not delusional as when I stick my head in the pillows and swallow, the sound is louder (due to it being more hearable) and my brother can hear it when he pushes his ear on the right side of my head.

I have taken MRI scan which came as: pineal cyst, cystic lesions, features raise the possibility of haemorrhage within a small pineal cystt.
And my video EEG came as non epileptic and basically they stopped taking my condition serious and stopped my appointments. Even though I had zero symptoms and none of the brainwave sensations that preceed a tic which cause the symptoms while taking the test. I even stated this 3 times during the test (because the waves are very feelable to me whenever I get them).



I would like to stop to suppressing the tics which caused all of this, but unfortunately I'm not getting any tics, but only the brainwave that preceeds them, which automatically become suppressed/blocked, followed by the symptoms.
Does anyone whether this brainwave/blockage is to do with blood or with neurons?

Trying to make sense of this in scientific terms without knowing anyhing about neurology myself, so excuse me:

The "wave sensation" feels like it has to do with neurons, but then I can't explain the "clot" feeling. Does anyone know a scientific explanation on how neurons can cause a clot feeling? It's as though a tube is blocked and the flow doesn't get through. That's why I am confused whether it has to do with blood or neurons, cause blood clot is more obvious. But then the wave is out of the place isn't it?

For example, can neurotransmitters or receptors somehow be damaged and become blocked?
Like that in a spot of the brain, the information/electricity doesn't go from A to B and is blocked and therefore forced to go from other pathways?

I appreciate anyone willing to discuss and/or help, as this has put a huge strain on my life and I haven't been able to do anything except for a few minutes a day as the rest of the day I am cognitively and physically near gone. And sorry if none of this made sense. My cognition is a lot lower than what it used to be and it's hard to explain. Hope you understand.

PS: all of this was written during months of the rare moments when a little of my cognition came back. The rest of the day I'm cognitively gone, someone please help. I will try to get another neurologist, but my previous neurologists didn't take me serious when I told them this. So I need to know how to tell it to them, because saying "my brain feels blocked" is not something that will be taken serious, as there is many different ways for it to be blocked, like mental rather than physical.

Thank you all who took the time to read this.
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Flex
post Jul 14, 2012, 01:26 PM
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I can honestly say I haven't the slightest idea what is going on.

My only guess would be you trained yourself to convert your tics from one form to another. I imagine this process took some time to learn, and will take some time to unlearn. The "brain wave" sensation sort of sounds like what I experience when I try to imagine my consciousness inside my head (hard to explain) but when I do I get a pulse of blood and temple flexing. I can imagine if you were forcing a tic from one form to an internalized form, this might happen in a really extreme way.

Sorry I cannot lend any suggestions other than to keep trying to embrace your old tics. I hope you can find some relief!
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UrgentHelp
post Jul 14, 2012, 02:24 PM
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Thanks for the reply.
A thing with tourettes is that if you suppress a tic, it comes back 2 times stronger everytime, until you actually do the tic. But after suppressing so many, I have "forced my brain/body" to diminish the energy that causes the tic at the source (the brainwave). So whenever I get a tic, I automatically block it and diminish the source of the energy.

The tic however is filled with a train of emotion and thoughts. Basically it's a positive "process of information". So now whenever I am in a situation that would normally fire a tic, it diminishes the brain wave but ALSO the train of emotion/thoughts. So it kind of completely "shuts down" the system (brain) and my ability to function (cognitively and physically) is near to 0 until I get a tic, which as months go by, take longer and longer, sometimes hours till I get one, as the "learned" automatic suppression becomes more of a repeating pattern.

So basically to summarize, this is what happening:
1: I get brainwave - it becomes blocked - however a small percentage of the brainwave goes through unblocked pathways and thus giving me a very limited cognitive ability.
2: however when the brainwave is diminished
(due to learned processes) the cognitive/physical functions become severely limited (to the point that I'm unable to watch TV even, memory dissapears every 5 seconds, no information is processed, difficult standing up/walking and so on).

So I think, brainwave has to do with a scientific thing that travels information inside the brain.
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KoolK3n
post Jul 14, 2012, 03:29 PM
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http://en.wikipedia.org/wiki/Guanfacine#Tics
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Flex
post Jul 14, 2012, 07:28 PM
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Can't hurt to visit your doctor smile.gif I am sure there are some really good tricks for dealing with such things, maybe some temporary meds as a last resort.
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UrgentHelp
post Jul 15, 2012, 03:22 AM
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I've taken many medication for this in the past, and my psychiatrist wanted to prescribe me anti-psychotics. But the thing with anti psychotics is that it decreases the brainwaves and ultimately leads to less cognitive abilities.

In my opinion the problem is not the brainwaves, but the blockage. I'm afraid that if I take meds the blockage will still remain, but the brainwaves will be decreased.
I was wondering if there is a different method for treatment that is based on opening the blockage, such as magnetic treatment of the brain or some sort of stimulation?

In the past whenever the blockage occured, the way it "opened" and "dissappeared" was when I had a strong brainwave that manifested in a tic. And I gained back all my cognitive abilities.


The problem is that the brainwaves aren't that strong anymore, and those small ones automatically get suppressed. And anti-psychotics will decrease the brainwaves in order not to get the tics. But I think the stimulation of tics are the only possible way to heal blockage.

If someone thinks my theory on this is incorrect please tell me so.
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Flex
post Jul 15, 2012, 09:42 AM
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I think acupuncture and massage could be an interesting idea, and a lot more enjoyable than medications. I agree with you it will probably just cover the symptoms more than help you get your tics back.
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UrgentHelp
post Jul 16, 2012, 08:19 AM
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I think the brainwave sensation is indeed neurological, but it triggers a "tension" in the brain that results in disruption of the blood. Because it feels completely blocked and there is this pulse/pressure along with it, and when I swallow (which creates a type of "contraction" towards that blocked area) it causes a sudden abruption, which pushes the blood through various pathways. And when I tic or get a stimulation which both "relax my brain", then there's a feeling and a sound of the "tubes/veins" where the flow is recontinued and the symptoms partially start dissapearing. Also with feeling I mean an undeniable "physical feeling", and not as in "i can feel it, this lottery ticket is going to win" type of feeling.

EEG tests only measure neuron activity and don't detect faulty in the blood veins right?
Is there a way for doctors to find out if the problem lies in the blood veins? Like any tests I can take? Thanks.
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KoolK3n
post Jul 16, 2012, 08:20 AM
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QUOTE(Flex @ Jul 15, 2012, 12:42 PM) *

I think acupuncture and massage could be an interesting idea, and a lot more enjoyable than medications. I agree with you it will probably just cover the symptoms more than help you get your tics back.


You could also try an isolation tank. Expensive service though.
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another_life
post Mar 29, 2013, 01:14 PM
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QUOTE(UrgentHelp @ Jul 14, 2012, 09:11 AM) *

I will keep this VERY summarized so that people will read it, but if you have any questions PLEASE ask me.

I have severe tourette syndrome and have been suppressing ALL my tics for 2 years straight which estimate to about 500,000 tics. I started developing VERY serious symptoms due to this from the moment I started doing it, but due to social issues (even in my home) I have kept suppressing them against my will even though it was VERY hard and painful.

First some of the symptoms (put severe behind every line):
-severe decrease of cognition: loss of memory (especially short term memory), unable to process information, vision problems, unable to read or understand language.
-Numbness of face
-Weakness of muscles
-coordination problems
-loss of emotions/thoughts
-sometimes pain in certain areas of the head or the right side of the face and ear
-Sudden "magnetic feeling" sharp pains in teeth
-Physical pain in neck, trapezius, pectoralis (this pain started after getting long shocks going from the blocked area to these areas and the physiotherapist confirmed it.)

Thing with a tic is, a fraction of a second before it manifests into a motor or vocal tic, there is a "brainwave sensation" (which I believe has to do with neurons, neurotransmitters/receptors etc.)

However, after suppressing tics for so long, the tic automatically becomes suppressed AFTER the "brainwave senstation", right before it manifests into a motor/vocal tic.
This brainwave is felt specifically in the right side of my brain and that specific area feels blocked, and clotted after the automatic suppression of the tics.
I can't stress enough on how feelable this blockage is. Infact, if I swallow (which pushes a bit towards the blockage), there is a relatively loud *KRAK* sound.
The more/stronger the brainwave-tic is, the more BLOCKED this area becomes, and the more LOUDER/PAINFUL the release of this "clot" becomes and the severer the symptoms become.

This *KRAK* sound is only heard when the act of swallowing causes the sudden release of the "blockage". Therefore, it's not there when the brainwave hasn't "filled' the blockage.
Note: the sound is not delusional as when I stick my head in the pillows and swallow, the sound is louder (due to it being more hearable) and my brother can hear it when he pushes his ear on the right side of my head.

I have taken MRI scan which came as: pineal cyst, cystic lesions, features raise the possibility of haemorrhage within a small pineal cystt.
And my video EEG came as non epileptic and basically they stopped taking my condition serious and stopped my appointments. Even though I had zero symptoms and none of the brainwave sensations that preceed a tic which cause the symptoms while taking the test. I even stated this 3 times during the test (because the waves are very feelable to me whenever I get them).



I would like to stop to suppressing the tics which caused all of this, but unfortunately I'm not getting any tics, but only the brainwave that preceeds them, which automatically become suppressed/blocked, followed by the symptoms.
Does anyone whether this brainwave/blockage is to do with blood or with neurons?

Trying to make sense of this in scientific terms without knowing anyhing about neurology myself, so excuse me:

The "wave sensation" feels like it has to do with neurons, but then I can't explain the "clot" feeling. Does anyone know a scientific explanation on how neurons can cause a clot feeling? It's as though a tube is blocked and the flow doesn't get through. That's why I am confused whether it has to do with blood or neurons, cause blood clot is more obvious. But then the wave is out of the place isn't it?

For example, can neurotransmitters or receptors somehow be damaged and become blocked?
Like that in a spot of the brain, the information/electricity doesn't go from A to B and is blocked and therefore forced to go from other pathways?

I appreciate anyone willing to discuss and/or help, as this has put a huge strain on my life and I haven't been able to do anything except for a few minutes a day as the rest of the day I am cognitively and physically near gone. And sorry if none of this made sense. My cognition is a lot lower than what it used to be and it's hard to explain. Hope you understand.

PS: all of this was written during months of the rare moments when a little of my cognition came back. The rest of the day I'm cognitively gone, someone please help. I will try to get another neurologist, but my previous neurologists didn't take me serious when I told them this. So I need to know how to tell it to them, because saying "my brain feels blocked" is not something that will be taken serious, as there is many different ways for it to be blocked, like mental rather than physical.

Thank you all who took the time to read this.

i believe i have the same problem you have with differences in severty and form.
there are not enough studies yet on long term suppression of tics . so, you will not find information about your case and some doctors may get puzzled.
im having most of these symptoms for about 12 years till now. so dont worry you will adapt to them in worst cases.
please contact me for more information.
amrsabry86" yahoo
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andrew112
post May 30, 2013, 09:58 PM
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I am on an anti psychotic and have developed very severe Tardive Dyskinesia from it. However, I have suppressed all of it - in social situations - and it is extremely painful. I guess it is just in my personality to suppress all of my facial tics/movements in social situations. I have been trying to not suppress the facial tics/movements, but it is a matter of unlearning the behavior to suppress them. I have developed Schizophrenia, which I surmise could have been caused by suppressing my tics - before I developed Tardive Dyskinesia from the medication and before I developed Psychosis. One of my psychiatrists was telling a story to my family and I during a family therapy session. He said that there was a man who was a prisoner of war and was tortured for three months straight, and that he eventually 'went psychotic'. He diagnosed me as having a very severe case of Psychosis.

There are probably many other people out there who have gone through what I have gone though. For example, about 1% of the entire population has Schizophrenia/Psychosis. That is a lot of people.
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