24/7 Tinnitus for MONTHS, Help Me

deathbymigraine

deathbymigraine

Member
Author
Dec 15, 2014
33
Tinnitus Since
11/29/14
#1
22 y/o F. Dropped out of university Dec 2013 due to health problems, mainly a daily headache. I have had a constant headache (24/7, no break) for 27 MONTHS. As if that wasn't enough to make me suicidal, I had tinnitus start 8 MONTHS ago, again 100% constant. I have no diagnosis for the headache. As for the tinnitus- it started a day or two after I started using CEFALY… a tens unit for migraines. (see here, I have the Canadian version http://www.cefaly.ca) I stopped use of this device immediately.

One of the only contraindications of this device is not to use if you have Meniere's disease. I just recently had my hearing checked and NO hearing loss, NO meniere's. I rarely use aspirin, advil. I drink coffee intermittently. I have a healthy diet. I have tried all kinds of essential oils for my tinnitus, I have tried snake oil tinnitus products, herbs, acupuncture, meditation. NO RELIEF. 24/7 for 8 months in my left ear, possibly a bit in my right ear but I don't hear it there unless my right ear is on the pillow.

It is not just a high pitched sound. It is a high and low pitched ring, some pulsing, some buzzing, whirring. Just a weird sensation with horribly annoying noise.

I have not used the Cefaly device since the tinnitus started. I'm wondering if using it again (maybe on a different setting) would somehow make it go away. I have not had an MRI since Jan 2014. I am also concerned because my Physical therapist felt a cyst (base of skull near left ear) a few months ago. Don't now how long it has been there for. I have had lots of doctors press on it and they tell me they don't know what it is but not to worry. Should I have a specific MRI? What do I do?? I can't take it anymore. The headache is bad enough. I want to die.
 
#2
If you die, you shatter your hopes of ever getting better. You are young. The future is still your friend. I know its hard but have hope because in the end, its all we have.
 
#3
I appreciate it but I don't feel the same way. I can't live every day in pain and agony. The headache is bad enough. The tinnitus is just extra cruel. My mind and body are falling apart.
 
#4
I heard of a case who got tinnitus right after using for some pain a psysiotherpy machine (something in the same group with that bloody device) on the neck, near the ear. The doctor prescribed him Betaserc and Xanax. The patient got cured of T, but I don't know after how long. Thinking at what Betaserc does, I don't think it had anything to do with his healing. I'm not sure about Xanax either. I personally think T went away by itself.
Don't despair. There are drugs that can help you, and you can heal in time naturally, but it's true that you have to have huge amounts of strengh and patience.
I would sue CEFALY, they deserve it, but it's hard to prove the connection between emergence of T and the use of this device.
I wish you to stay strong. Only after 18 months T is considered chronic. Until then it can go away by itself.
 
#5
deathbymigraine said:
22 y/o F. Dropped out of university Dec 2013 due to health problems, mainly a daily headache. I have had a constant headache (24/7, no break) for 27 MONTHS. As if that wasn't enough to make me suicidal, I had tinnitus start 8 MONTHS ago, again 100% constant. I have no diagnosis for the headache. As for the tinnitus- it started a day or two after I started using CEFALY… a tens unit for migraines. (see here, I have the Canadian version http://www.cefaly.ca) I stopped use of this device immediately.

One of the only contraindications of this device is not to use if you have Meniere's disease. I just recently had my hearing checked and NO hearing loss, NO meniere's. I rarely use aspirin, advil. I drink coffee intermittently. I have a healthy diet. I have tried all kinds of essential oils for my tinnitus, I have tried snake oil tinnitus products, herbs, acupuncture, meditation. NO RELIEF. 24/7 for 8 months in my left ear, possibly a bit in my right ear but I don't hear it there unless my right ear is on the pillow.

It is not just a high pitched sound. It is a high and low pitched ring, some pulsing, some buzzing, whirring. Just a weird sensation with horribly annoying noise.

I have not used the Cefaly device since the tinnitus started. I'm wondering if using it again (maybe on a different setting) would somehow make it go away. I have not had an MRI since Jan 2014. I am also concerned because my Physical therapist felt a cyst (base of skull near left ear) a few months ago. Don't now how long it has been there for. I have had lots of doctors press on it and they tell me they don't know what it is but not to worry. Should I have a specific MRI? What do I do?? I can't take it anymore. The headache is bad enough. I want to die.
Click to expand...

In your case I would use trobalt as it can help reduce tinnitus and can help with those headaches.

Retigabine (Trobalt) works primarily as a potassium channel opener—that is, by activating a certain family of voltage-gated potassium channels in the brain.[3][4][5] This mechanism of action is unique among antiepileptic drugs, and may hold promise for the treatment of other neurologic conditions, including migraine, tinnitus[6] and neuropathic pain.
 
#6
When I said "there are drugs that can help you" I had Retigabine in mind, but I left it to other people to recommend it to you, people who actually used it. (I didn't, because of difficulties to obtain it).
Danny Boy knows better, but I think that if you are willing to try Retigatine, time is of the essential: the sooner the better.
 
#7
Thank you all I appreciate it. I will call my neurologist tomorrow to write an Rx for Retigabine. (I've suffered for so long that my doctors will prescribe anything to me at this point, shouldn't be a problem).

There isn't much info on RGB, but everything I read sounds extra promising for me… my tinnitus was NOT caused my a loud sound etc… it was caused by electro magnetic stimulation, probably sending my (already exhausted) nerves into a frenzy. If anything, I'll be happy to get my tinnitus to quiet down a bit so I can sleep better and have less stress to deal with (even if it's only for a few weeks). But from my research, it almost sounds like RGB can reverse the crazy electricity/waves that are triggering my T. I'm truly hoping it can kill 2 birds with one stone- help my tinnitus AND headache.

I ENVY those who only have T and no other real health issues to deal with…Life sure is cruel.

I will be posting about the drug once I start it. Thank you.
 
#8
And none of the doctors has figured out by himself to prescribe you this drug ? Didn't they offer you a surgery ? I've seen a doc about it, people with constant migraine undergo a relieving surgery..Sounds like you're a perfect candidate..I surely wish you all the best. Life cannot be such a b..tch for so long.
 
#9
Gosia- actually my mom and I just skyped with one of the top surgeons in the US that does that migraine surgery. I seemed like a perfect candidate… he told me if I have a positive response to nerve blocks (AKA if my pain goes away 50%+ temporarily after a few injections) then the surgery (basically a permanent version) would help. I did the nerve blocks last week and no relief. I also don't hold anesthetics very well due to having hyper mobility/EDS….. so we are back to square one. Long story short the surgery would be a huge leap of faith since the nerve blocks I had by my neurologist didn't work. However, it is possible that the surgeon does them better/differently (He is in san francisco and I am in LA so I can't make that impossible trip unless I know I'm getting relief).

:/ you would think life can't be like this for so long...
 
#10
Well, never mind on the Retigabine… my doctor said he won't prescribe it because he doesn't know anything about it. My mom doesn't want me to take it because of the scary warning signs……

It's my body and I want it, but I guess i can't get it. Any help??
 
#11
deathbymigraine said:
I ENVY those who only have T and no other real health issues to deal with…Life sure is cruel.
Click to expand...

I know that you are hurting but calling "only" T not a "real" issue and saying that you envy us/those is just damn wrong. This is the wrong board for you if you think that.

There are several people whose existence was oblitarated by extreme T and H, people who are dead because of it.
And as one of those people who has extreme T such statements piss me off.

I know that doesn´ help you...still needed to say that.

good luck.
 
#12
@snow86, I know you have the bitch T and I feel for you as much as I can, but let's not be harsh on each other- the author must suffer as much as you, maybe haven't heard about that extreme cases of T and H yet. Having constant migraine must be a living hell I cannot even imagine.

Sorry to hear that nerve blocks didn't work. Do you know other people in your situation?
 
#13
snow86 said:
I know that you are hurting but calling "only" T not a "real" issue and saying that you envy us/those is just damn wrong. This is the wrong board for you if you think that.

There are several people whose existence was oblitarated by extreme T and H, people who are dead because of it.
And as one of those people who has extreme T such statements piss me off.

I know that doesn´ help you...still needed to say that.

good luck.
Click to expand...

I agree 100%. I deal with chronic pain, T and H and also am watching someone I LOVE die from T. It is f**king torture!!!!!

Sorry and peace out..I mean no offense but I also must say it.

With that said.....OP I am sorry for your condition. Many of us here are in living hell. I hope you find something to carry you..
 
#14
@snow86 @Street Spirit ..???I said I envy those who only have T and no OTHER real health issues.. meaning T is a HUGE issue, but I envy those who have T and the rest of their general health. I'm obviously on this blog because my T is making me suicidal & I need help. But thanks….

@Gosia Yes, some have been helped by the surgery (but the nerve blocks helped first), some have New daily Persistent Headache which some neurologists suspect I have. It is a headache that starts one day and doesn't stop…. it's a true nightmare. Some people have it for decades. I can't take it anymore. Doing some more blood/urine tests, doing another MRI. Just looking for something although there seems to be nothing. 2+years of pain and doctors and still not even a remote answer or helpful treatment. Can't take it.
 
#16
deathbymigraine said:
@snow86 @Street Spirit ..???I said I envy those who only have T and no OTHER real health issues.. meaning T is a HUGE issue, but I envy those who have T and the rest of their general health. I'm obviously on this blog because my T is making me suicidal & I need help. But thanks….

@Gosia Yes, some have been helped by the surgery (but the nerve blocks helped first), some have New daily Persistent Headache which some neurologists suspect I have. It is a headache that starts one day and doesn't stop…. it's a true nightmare. Some people have it for decades. I can't take it anymore. Doing some more blood/urine tests, doing another MRI. Just looking for something although there seems to be nothing. 2+years of pain and doctors and still not even a remote answer or helpful treatment. Can't take it.
Click to expand...

Again no offense..yes it is making others suicidal as well..T is a MAJOR HEALTH ISSUE!! And should be treated as such. I have chronic pain too!! and severe H and T..suicidal, yes I am! Watching someoneI love die because of it!!!..sorry but you just need to choose your words more carefully...is all me and snow meant....I know what it's like to have chronic pain and then t, you don't even want to know what H is. added...Yea..it is a real soul twister and you want to die.....I also get migraines so I sympathize..I will not suggest drugs because I assume you have a Neuro and have tried them all.

Peace and health to you (mind, body, soul)
 
#18
deathbymigraine said:
If my headache magically went away tomorrow, I would still have the T to deal with, which is almost as bad. On some days it IS as bad, or worse. No end in sight.
Click to expand...

There is no cure for T...yet..yes..no end in sight..I am sorry all drugs for chronic migraines have failed you???? however there are options. .Have you considered alternative therapy? I apologize for coming off Harsh I am in process of losing someone and it a really hard day.
 
#19
Has anyone else on here had success with Retigabine? Should I have another one of my doctors prescribe it for me or are the "permanent blindness" warnings truly something to take into consideration? This is the reason my mom doesn't want me to take it.

I have been on several dozen medications, most with terrible side effects..I choose to do things as naturally as possible, however I am SO desperate to get my T at least under control. The hope is to have it reversed since it has been "only" 8 months, and definitely triggered by electricity (TENS unit), not sound.
 
#21
Street spirit, I am sorry to hear that. I understand. I just didn't understand why people were putting words in my mouth? Again I am on this forum because T is a serious issue & I need support for it. I am on other forums for my headache and other issues. T is no joke.

yes I have tried everything from medicinal leeches to medicinal marijuana to acupuncture to injections to meditation to reiki to neuro feedback to… everything. literally everything. zero help.
 
#22
deathbymigraine said:
Street spirit, I am sorry to hear that. I understand. I just didn't understand why people were putting words in my mouth? Again I am on this forum because T is a serious issue & I need support for it. I am on other forums for my headache and other issues. T is no joke.

yes I have tried everything from medicinal leeches to medicinal marijuana to acupuncture to injections to meditation to reiki to neuro feedback to… everything. literally everything. zero help.
Click to expand...

.."zero help"...yes I understand very well. The only other drug that comes to mind is " shrooms" though I am sure you have heard all about that..regarding T..what I said above is accurate..most..or many habituate in time depending on severity. The beginning is always hardest (6 mth to 2 yrs)
 
#23
@deathbymigraine

Please forgive my angry outburst...I explained above why..I just felt the need to apologize again.

I have severe H, t and neuralgia..2 years..no help from docs..no drugs aside from clonazepam which is a problem in itself. .however it can lower T and also treat neuralgia..you never know, may help your migrianes. Also be investigate for TMJD. It is also a cause for chronic migraine.
 
#24
thank you. I use valium & xanax. helps the headache and tinnitus 5%, I only take it as needed for anxiety. I have TMJ, was given a very expensive & well-constructed custom mouthguard a year ago. I wear it every night. Again no help
 
#25
deathbymigrane,

It's not clear to me how thorough your testing has been so I'd like to start from the top and ask a couple of questions:
1) What tests have you had done since the onset of tinnitus? Do you have specifics on the hearing test? There are a number of possible tests beyond the basic "hearing test", and these can be used to rule out some possible physical causes.
2) Did you have specific testing done for Meniere's?
3) What meds are you on or have you been on?
4) Do you have any other symptoms? (e.g., ear fullness, difficulty "popping" ears when flying, history of ear infections - especially your left ear, clenching teeth/TMJ issues)

Particularly with the "cyst" at the base of your skull, I would suggest you try of have a more thorough workup. If the "cyst" is really just on the surface, it seems unlikely to be the problem, but if I were you I would want someone to take it seriously and rule it out based on a medical test rather than a guess. (To me a perfectly reasonable answer to a doctor who says "I don't know what it is" and "It's nothing to worry about" would be "how can you know it is nothing to worry about if you don't know what it is?")
 
#26
Aaron123 said:
deathbymigrane,

1) What tests have you had done since the onset of tinnitus? Do you have specifics on the hearing test? There are a number of possible tests beyond the basic "hearing test", and these can be used to rule out some possible physical causes.
2) Did you have specific testing done for Meniere's?
3) What meds are you on or have you been on?
4) Do you have any other symptoms? (e.g., ear fullness, difficulty "popping" ears when flying, history of ear infections - especially your left ear, clenching teeth/TMJ issues)
Click to expand...

THANK YOU for your questions.
1. Just read the hearing test report b/c I had forgotten.. it says "mild hearing loss at 6,000 Hertz AU", my doctor told me he believes this isn't hearing "loss", but where my tinnitus is located, which masks sound..

2. According to the ENT that did the hearing test, he tested for Meniere's and is positive that is was negative (hard for me to believe but I will just take his word).
3. Too many to count. Everything form anti-depressants/ psychotics, triptans, this and that. At least 25 medicines. At the time this stated I wasn't on any medication besides my usual (xanax/valium as needed, tylenol aspirin as needed, homeopathic meds). I am VERY careful with meds and only take them if necessary (they don't usually help anyways).
4. I had MANY ear infections as a baby/young child. Haven't had one since I was 14. Almost always had trouble with ear popping on flights. TMJ has ben checked, given a mouth guard. Made zero difference in my headache or tinnitus.

As for the cyst I agree. & it is not at the surface, you have to press in to feel it. I am getting an upright MRI on Friday (cervical spine) to see if there is anything there causing my headache. I will see if they look above the base of the skull. I am hoping through this MRI they look at the skull as well and can therefore see my cyst (although this MRI's imagine isn't as good as standard laying-down MRIs
 
#28
1) Is the hearing loss only in the left ear? Did you have any testing done other than the frequency (i.e., hear the beep and raise your hand). There is an array of diagnostic tests that may be done http://www.dizziness-and-balance.com/disorders/hearing/tinnitus.htm#diagnose

2) Regarding testing for Meniere's, I don't think I hearing test is sufficient to rule it out (http://www.mayoclinic.org/diseases-conditions/menieres-disease/basics/tests-diagnosis/con-20028251). That said, absent significant vertigo, it seems unlikely.

3) Have you been on benzos a long time? Dosage? On and off again? Have to be careful with them as one symptom of discontinuation is tinnitus. You probably already know this, but stopping must be done carefully.

4) Frequent ear infections, ETD, and TMJ are all risk factors.

5) I would definitely find someone to check out the cyst. No idea if the standing MRI would work, but I would want to know one way or the other (and probably have it removed).
 
#29
deathbymigraine said:
thank you. I use valium & xanax. helps the headache and tinnitus 5%, I only take it as needed for anxiety. I have TMJ, was given a very expensive & well-constructed custom mouthguard a year ago. I wear it every night. Again no help
Click to expand...

Clonazepam has specific pain blocking properties. V and X will not help and are not the same though, benzos as well. Also has shown to reduce T in studies...
 

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