I Am Starting rTMS in March

[deathbymigraine]

Hello all. I have had an intractable 24/7 headache for 3 years, coupled with tinnitus that started over a year ago (no known cause), and of course debilitating depression and anxiety (you can just imagine how being a 20 something year old with debilitating health issues feels..). I have been out of school for over two years and can hardly take care of myself. I have tried more than I can even write on here. So I'll keep it short.

One of my neurologists is one of the top headache specialists in the country. I heard from another doctor of mine (I have dozens, almost all are UCLA or Cedars Sinai docs), that she has begun using rTMS successfully for her patients with refractory headaches that don't respond to any treatment- like me. She is also seeing "great results" in those same patients that also have tinnitus/depression/anxiety. I of course have all 4, and believe her treatment will significantly reduce if not cure the whole issue.

I never had hope I was going to heal one day until I learned about neuroplasticity last year. I have been saying for years that "It's as if my brain has re-wired this pain and all these symptoms as the new "normal"'. I have been diagnosed with Dysautonomia, and that is the closest to a diagnosis I'll ever get.

So why write all this? Because I have faith in this doctor, I have faith in this treatment, and in my brain's ability to re-wire itself back to pre-pain/illness. I know many of you are curious about this treatment so please feel free to ask any questions before I start next month.

First I am having an fMRI done on Feb 29 (or earlier if I can switch the date). The fMRI will show the parts of the brain that are hyperactive, and the TMS will quiet those areas down. On the other hand the TMS will "wake up" parts of the brain that are asleep. The TMS targets these parts of the brain within millimeters. I am hopeful that for the first time in 3 years I will have relief, and that I can get my life back as a young person. Thank you. Blessings to all.

(PS- I spoke to my neurologist's patient who had his 6.5 year headache cured by this machine. He also showed me his before and after fMRI pics. This is real science.)

 

[Atlantis]

Hello all. I have had an intractable 24/7 headache for 3 years, coupled with tinnitus that started over a year ago (no known cause), and of course debilitating depression and anxiety (you can just imagine how being a 20 something year old with debilitating health issues feels..). I have been out of school for over two years and can hardly take care of myself. I have tried more than I can even write on here. So I'll keep it short.

One of my neurologists is one of the top headache specialists in the country. I heard from another doctor of mine (I have dozens, almost all are UCLA or Cedars Sinai docs), that she has begun using rTMS successfully for her patients with refractory headaches that don't respond to any treatment- like me. She is also seeing "great results" in those same patients that also have tinnitus/depression/anxiety. I of course have all 4, and believe her treatment will significantly reduce if not cure the whole issue.

I never had hope I was going to heal one day until I learned about neuroplasticity last year. I have been saying for years that "It's as if my brain has re-wired this pain and all these symptoms as the new "normal"'. I have been diagnosed with Dysautonomia, and that is the closest to a diagnosis I'll ever get.

So why write all this? Because I have faith in this doctor, I have faith in this treatment, and in my brain's ability to re-wire itself back to pre-pain/illness. I know many of you are curious about this treatment so please feel free to ask any questions before I start next month.

First I am having an fMRI done on Feb 29 (or earlier if I can switch the date). The fMRI will show the parts of the brain that are hyperactive, and the TMS will quiet those areas down. On the other hand the TMS will "wake up" parts of the brain that are asleep. The TMS targets these parts of the brain within millimeters. I am hopeful that for the first time in 3 years I will have relief, and that I can get my life back as a young person. Thank you. Blessings to all.

(PS- I spoke to my neurologist's patient who had his 6.5 year headache cured by this machine. He also showed me his before and after fMRI pics. This is real science.)

rTMS don't have too good results in literature. Maybe it works for you. How much does it cost or does insurance cover it?

 

[Alue]

Good luck! Let us know how it goes.

 

[deathbymigraine]

rTMS don't have too good results in literature. Maybe it works for you. How much does it cost or does insurance cover it?

What literature? I have read so many articles about rTMS being one of the only things to ever give people with tinnitus relief, whether it is long lasting or not. Unfortunately, because I am going through my neurologist in private practice and it is not FDA approved for headaches/chronic pain yet we are paying out of pocket, and the cost is ridiculous. Hopefully insurance will reimburse for some but it will barely help. We will be spending about $20,000 between the fMRI and all the sessions (4-6 weeks). But this is a last resort, and I can't go on living like this. Health is priceless, especially when you're young.

 

[baz 22]

Wish you all the best. Health over money every time.

 

[lymebite]

@deathbymigraine

Best of luck with this treatment, I hope you get great results. You may have already come across the thread below by @Isabella 123 , if not it might be of interest (even though I realize I am mixing up rTMS and tDCS, though my vague understanding is they are not dis-similar in how they work).

https://www.tinnitustalk.com/thread...ranial-direct-current-stimulation-tdcs.11849/

She also references:

http://www.transcranialbrainstimulation.com/

 

[snow86]

Good luck. You're not the first person here to do that. (my experience from this can be found in the rTMS thread)

RTMS was my biggest mistake. Instead of helping me with my extreme T, it made it like 20 times worse. Added several new sounds, everything got louder, I can feel the sounds like a bass speaker next to my ears.
I've been pretty much disabled since I did rTMS and I regret it every day. It kind of set off a bomb in my head and my t is still worsening.


I think the method of stressing and overstimulating the brain with impulses and hoping the brain will settle after that is kind of bs for tinnitus. But I'm biased since it was pretty much the nail in the coffin for me. The tinnitus research initiative people who did the therapy aren't so sure of their results. It's pretty much brute force and hoping for the best.

But sure. With your other conditions I would try it to. My tinnitus was already suicidal so I had to try... Turned out even worse.

Good luck mate

 

[deathbymigraine]

RTMS was my biggest mistake. Instead of helping me with my extreme T, it made it like 20 times worse. Added several new sounds, everything got louder, I can feel the sounds like a bass speaker next to my ears.
I've been pretty much disabled since I did rTMS and I regret it every day. It kind of set off a bomb in my head and my t is still worsening.


I think the method of stressing and overstimulating the brain with impulses and hoping the brain will settle after that is kind of bs for tinnitus. But I'm biased since it was pretty much the nail in the coffin for me. The tinnitus research initiative people who did the therapy aren't so sure of their results. It's pretty much brute force and hoping for the best.

Snow86, I read your posts about rTMS making your T much more severe and I am so sorry. My heart truly goes out to you. I know how bothersome it must be to read my post with enthusiasm for starting rTMS when you regret doing it every day. When I read about people starting treatments that either gave me my headache or tinnitus or made them worse, I cringe and wish they wouldn't do it! BUT everyone is different. Some things work for some people, and not for everyone.

Anyway, may I ask where you had it done? When? What caused your T and were the doctors/staff knowledgeable or was your rTMS treatment very experimental, like a shot in the dark? I actually just had my fMRI don't yesterday, today my fMRI images are being read by a team of top neuroscientists in LA (including my neurologist), and on monday I am meeting with my neurologist to discuss the results. She will then tell me when I can start, how many sessions to expect, and where they will be targeting in the brain, based on findings from the fMRI. It is not just overestimation, as explained by my neurologist they use different frequencies to "quiet down" hyperactive parts of the brain, and a different frequency to "wake up" the asleep parts of the brain.

 

[Blackbird26]

Snow86, I read your posts about rTMS making your T much more severe and I am so sorry. My heart truly goes out to you. I know how bothersome it must be to read my post with enthusiasm for starting rTMS when you regret doing it every day. When I read about people starting treatments that either gave me my headache or tinnitus or made them worse, I cringe and wish they wouldn't do it! BUT everyone is different. Some things work for some people, and not for everyone.

Anyway, may I ask where you had it done? When? What caused your T and were the doctors/staff knowledgeable or was your rTMS treatment very experimental, like a shot in the dark? I actually just had my fMRI don't yesterday, today my fMRI images are being read by a team of top neuroscientists in LA (including my neurologist), and on monday I am meeting with my neurologist to discuss the results. She will then tell me when I can start, how many sessions to expect, and where they will be targeting in the brain, based on findings from the fMRI. It is not just overestimation, as explained by my neurologist they use different frequencies to "quiet down" hyperactive parts of the brain, and a different frequency to "wake up" the asleep parts of the brain.

Wishing you all the best! I truly hope it helps you!!!

 

[deathbymigraine]

I appreciate the kind words, guys. Here are some updates regarding my future rTMS treatment! As a reminder, we are first and foremost targeting the intractable headache. My next biggest concern is the T, followed by mood issues (which are really from the pain more than anything else).

I met with my neurologist last week to discuss the results of my functional MRI. She said "wow, your images are fascinating, they could be in a textbook!" (Probably will be one day). Anyway, the abnormalities are in the pain & suffering (salience) networks/emotional part of the brain, and the frontal cortex. All of my focus is on the pain, my brain literally cannot function executively as all the attention is being put on the pain. This was the first time in 3 years there has been PHYSICAL proof of my suffering. And boy, those images were lit up like Xmas trees (when they shouldn't be). So I am the perfect candidate for what she treats, as she has treated many successfully with my condition.

Then I asked her about my tinnitus, and whether or not she could see abnormality in my brain where tinnitus presents itself, like the auditory cortex for most. She said my auditory cortex looks great, which surprised me, until I remembered that my T was NOT induced by sound, but rather by my depression & previous headache drugs and treatments. Therefore my auditory cortex is NOT damaged as it is in most T sufferers, so it will not be targeted/treated. Remember the recent study that came out showing that chronic pain and tinnitus enter by the same gate in the same areas of the brain? I am no exception. So, according to my doctor's and my hypothesis, if we can successfully destroy the headache, the tinnitus could certainly disappear with it.

https://www.sciencedaily.com/releases/2015/09/150923134105.htm
excerpt from article: "Structural and functional changes in the same brain circuit -- including the ventromedial prefrontal cortex and the nucleus accumbens -- can open the gateway to both tinnitus and pain that persists long past any acute cause."

What do you all think? I start rTMS in under 2 weeks. This week my neurologist and her team are constructing a 3D model of my brain to neuro navigate from. Glad all this money is going to good use!

 

[Blackbird26]

I appreciate the kind words, guys. Here are some updates regarding my future rTMS treatment! As a reminder, we are first and foremost targeting the intractable headache. My next biggest concern is the T, followed by mood issues (which are really from the pain more than anything else).

I met with my neurologist last week to discuss the results of my functional MRI. She said "wow, your images are fascinating, they could be in a textbook!" (Probably will be one day). Anyway, the abnormalities are in the pain & suffering (salience) networks/emotional part of the brain, and the frontal cortex. All of my focus is on the pain, my brain literally cannot function executively as all the attention is being put on the pain. This was the first time in 3 years there has been PHYSICAL proof of my suffering. And boy, those images were lit up like Xmas trees (when they shouldn't be). So I am the perfect candidate for what she treats, as she has treated many successfully with my condition.

Then I asked her about my tinnitus, and whether or not she could see abnormality in my brain where tinnitus presents itself, like the auditory cortex for most. She said my auditory cortex looks great, which surprised me, until I remembered that my T was NOT induced by sound, but rather by my depression & previous headache drugs and treatments. Therefore my auditory cortex is NOT damaged as it is in most T sufferers, so it will not be targeted/treated. Remember the recent study that came out showing that chronic pain and tinnitus enter by the same gate in the same areas of the brain? I am no exception. So, according to my doctor's and my hypothesis, if we can successfully destroy the headache, the tinnitus could certainly disappear with it.

https://www.sciencedaily.com/releases/2015/09/150923134105.htm
excerpt from article: "Structural and functional changes in the same brain circuit -- including the ventromedial prefrontal cortex and the nucleus accumbens -- can open the gateway to both tinnitus and pain that persists long past any acute cause."

What do you all think? I start rTMS in under 2 weeks. This week my neurologist and her team are constructing a 3D model of my brain to neuro navigate from. Glad all this money is going to good use!

Interesting and thanks for the update. I also have chronic pain before T and H onset with no acoustic trauma incident that preceeded...My Neuro ordered a brain and neck MRI but with bad H I am hesitant to do it again. Anyways I will be following your progress and I hope it works out for you!! I may just go and get my MRI done now. (Also I had depression due to chronic pain as well..and still do.)

 

[deathbymigraine]

@Blackbird26 if I get any relief from this I will post as much info as possible so that you too may get this treatment done and get relief! Sounds like we are similar. I totally understand about hesitating to do a(nother) MRI.. man those things are loud. Unfortunately this fMRI was the worst of the many scans I've had. full 40+ minutes, completely strapped down, not allowed to take anxiety medication prior (so as to get a more accurate read), and I had to stare at a bright screen the whole time. IF you decide to get another scan to see whats going on definitely get the functional MRI as a general MRI is just a snapshot, while the fMRI shows live activity/blood flow in the brain.

 

[deathbymigraine]

But also I understand that your neurologist is sending you for a regular MRI to check structural issues

 

[Blackbird26]

@Blackbird26 if I get any relief from this I will post as much info as possible so that you too may get this treatment done and get relief! Sounds like we are similar. I totally understand about hesitating to do a(nother) MRI.. man those things are loud. Unfortunately this fMRI was the worst of the many scans I've had. full 40+ minutes, completely strapped down, not allowed to take anxiety medication prior (so as to get a more accurate read), and I had to stare at a bright screen the whole time. IF you decide to get another scan to see whats going on definitely get the functional MRI as a general MRI is just a snapshot, while the fMRI shows live activity/blood flow in the brain.

Thank you for that info, I did not know that regarding the different kinds of mri's. 40 mins staring at a bright screen with no meds sounds brutal. I have trouble with bright lights, I wear my shades whenever I go outside and sometimes also in bright stores. Neuro says I have 'chronic atypical migraine' Pain, tinnitus and hyperacusis is what I have, and of course depression. It has totally dismantled my life. Awful. I also have tmj disorder so I don't know what causes what or if it is all related or not at all..Complicated. :/

 

[deathbymigraine]

i have not updated because I do not feel any relief yet, in any regard. However my condition is very severe, and it is normal to take 4 weeks to start feeling an improvement. Again, I am doing this for a chronic daily 24/7 headache (3 years), and Dysautonomia. Tinnitus is an added symptom of these two diseases. I am almost 4 weeks in to TMS, and my neurologists have also just changed my treatment areas a bit. Hoping to feel a difference in a week. I also want to add that the auditory cortex area of my brain is not being touched at all, which is usually where T sufferers have their rTMS done. Mine is the frontal lobe, midline cingulate, and right dorsolateral prefrontal cortex. The hope is that when my headache breaks, and my symptoms improve/alleviate, so too will the T.

 

[efferent]

i have not updated because I do not feel any relief yet, in any regard. However my condition is very severe, and it is normal to take 4 weeks to start feeling an improvement

Hey @deathbymigraine, just checking if you ever felt any relief from TMS?