Struggling Here

[Natalie Roberts]

Hi everyone.. it's been awhile since I've posted but over the last few days or week I've been really struggling. My tinnitus is at an all time high and I literally get no break from it . I'm not sure if it's exaggerated because I recently had another MRI, although I took precautions and wore ear plugs, ear muffs and took Valium for my anxiety. Or maybe it's from the daily low dose aspirin I've been on for about 8 months but either way, I can't deal with this. It's worse now than it has ever been.. I have a neurologist appointment tomorrow and he has mentioned gabapentin can sometimes help, but I've also read it can make it worse..

I'm also going to ask about Lipoflavonoid and getting off my baby aspirin.. I just need some support..

Thanks for listening.

 

[GregCA]

My tinnitus is at an all time high and I literally get no break from it .

Welcome to "the club" (of crazy T that never gives a break). Do you have hearing aids? If so do they have any masking features? Sometimes they help take the edge off a bit.

 

[Natalie Roberts]

Welcome to "the club" (of crazy T that never gives a break). Do you have hearing aids? If so do they have any masking features? Sometimes they help take the edge off a bit.

I have been dealing with this BS for over 2 years and mine fluctuates SO much even hour to hour but lately there's just no break and I'm going crazy.. I do have hearing aids although I haven't worn them in 6 months, I got them out today and have been wearing them again.. I just don't know what to do..

 

[Tinker Bell]

Aspirin in high doses can cause hearing loss and tinnitus. From a brief google search, this seems to be a common symptom but it looks like tinnitus symptoms can decrease when the dose is decreased.

If you already have hearing loss, it's possible even a small amount could bother you. I was advised to avoid aspirin in any amount.

Why are you taking a low dose? Is there an alternative you can take?

 

[Tinker Bell]

Just saw on the MRI thread that you'd had a brain bleed in the past. Do you have the results of your recent MRI? Is it possible you had another brain bleed or any disruption to blood flow near your ears?

I'm so sorry you're dealing with the uncertainty of all of that on top of tinnitus.

 

[Greg Sacramento]

@Natalie Roberts Hi Natalie: For a few years of my hospital experience I worked in both the ER and OB floors. We saw cases in the ER from ETD, whiplash and from a host of other things, but during that time I didn't know the tinnitus related numbers after discharge. I did check back this last summer for stats before discharge and what stats they had after discharge for both ER and OB patients. Whiplash causing T was highest at 9%. Lucky me, I'm in the 9 percent.

Within OB it was hormonal changes (maybe by hereditary) that related to increasing flow. Congestion in the ear passages sometimes followed with closure per the Eustachian tube. If the patient didn't have balance or dizziness problems or lack of iron, I heard the T sometimes resolved after pregnancy from doctors, but I don't know the percent for that. We had a couple of nurses that experienced all of this and later months after giving birth, one developed TMJ/D and three years later she said her T was almost gone.

 

[john paul]

Im guessing you dont really know the real cause of the tinnitus? It sounds like it might just be a spike from the MRI. I feel like iv just been through a spike that lasted 4 Months and I'm back to sort of acceptable levels of T, that i used to consider silence or T id habituated unknowingly too. If you cut out the Asprin and stay away from loud stuff for a similar amount of time you will prob be ok. You probably already know to mask it and stuff. I feel like the best things for me these past 4 months its been, good food and vitamins, good exercise and good sleep. Baths and distractions and absolutely no loud noise above 70-80db. I went to a few places pubs and stuff for a few weeks after and it just made everything unbearable so i quickly learnt that noise is noise and my ears were not happy being stressed at all. It does get tedious when your constantly looking for something to stop your brain from exploding but anything to make your life easier and liveable is all you can do.

It was a battle these past 4 months for me but i do seem to be coming round from it. It can happen. Dont do anymore MRIs or Aspirins if you can help it. This experience in general for me has taught me not to put my faith in modern medicine what so ever, and sometimes especially in this case its better to take your own approach and find your own solutions to your issues than going by the book. Its a tough one when you feel like you should be able to trust doctors, 'they know whats best' but the fact is you just can't sometimes. I'm sorry your suffering, I'm sure it will settle down slowly just hang in there and be good to yourself.

 

[Greg Sacramento]

To add: Noise exposure was the number one walk in complaint for T.

 

[glynis]

Hi @Natalie Roberts.
Sorry to hear your tinnitus is really bad for you.
I would see ENT if it does not settle etc as I know you had problems on your MRI if I remember.
Could be related to your bleed so I would get checked out.
I hope your beautiful little girls are doing well .
Let us know how you get on and lovely to see you on here .
Love glynis x

 

[Danny Boy]

Hi @Natalie Roberts.
Sorry to hear your tinnitus is really bad for you.
I would see ENT if it does not settle etc as I know you had problems on your MRI if I remember.
Could be related to your bleed so I would get checked out.
I hope your beautiful little girls are doing well .
Let us know how you get on and lovely to see you on here .
Love glynis x

I wouldn't have an MRI unless you have a tumor, as it can cause hearing loss, which in turn can worsen tinnitus. I have first hand experience in an MRI worsening my tinnitus. Also, Lipoflavonoid is a scam, doesn't work, if it did we'd all be cured and wouldn't need this forum. Also, stay away from benzos as guess what? The withdrawal is horrible and one of the side-effects is.....Tinnitus. As for gabapentin never worked for me, but there are conflicting studies whether it works or not. Also, we'll all be here to help you no matter what ^_^.

 

[Tinker Bell]

I wouldn't have an MRI unless you have a tumor, as it can cause hearing loss, which in turn can worsen tinnitus. I have first hand experience in an MRI worsening my tinnitus. Also, Lipoflavonoid is a scam, doesn't work, if it did we'd all be cured and wouldn't need this forum. Also, stay away from benzos as guess what? The withdrawal is horrible and one of the side-effects is.....Tinnitus. As for gabapentin never worked for me, but there are conflicting studies whether it works or not. Also, we'll all be here to help you no matter what ^_^.

The author had a brain bleed. That would be another good reason to have an MRI since that could cause additional hearing loss and other serious health concerns.

 

[Danny Boy]

The author had a brain bleed. That would be another good reason to have an MRI since that could cause additional hearing loss and other serious health concerns.

Oh, sorry never read that part. She should go to hospital asap.

 

[Tinker Bell]

Oh, sorry never read that part. She should go to hospital asap.

I think she had the brain bleed in the past. Just wanted to add that there are reasons beyond a possible tumor to have an MRI. I have an elevated MS risk, so unfortunately MRIs will be a regular occurrence for me.

Wanted to ask, did gabapentin have any negative side effects for you? I'm wondering if it's a drug where there's no harm in trying it.

 

[Natalie Roberts]

@Natalie Roberts Hi Natalie: For a few years of my hospital experience I worked in both the ER and OB floors. We saw cases in the ER from ETD, whiplash and from a host of other things, but during that time I didn't know the tinnitus related numbers after discharge. I did check back this last summer for stats before discharge and what stats they had after discharge for both ER and OB patients. Whiplash causing T was highest at 9%. Lucky me, I'm in the 9 percent.

Within OB it was hormonal changes (maybe by hereditary) that related to increasing flow. Congestion in the ear passages sometimes followed with closure per the Eustachian tube. If the patient didn't have balance or dizziness problems or lack of iron, I heard the T sometimes resolved after pregnancy from doctors, but I don't know the percent for that. We had a couple of nurses that experienced all of this and later months after giving birth, one developed TMJ/D and three years later she said her T was almost gone.

My baby is already 2.. my tinnitus has only gotten worse. I do have TMJ but it's treated and makes no affect. I actually was diagnosed with FMD and one if it's symptoms is pulsatile T but my tinnitus is not necessarily pulsatile but it is rhythmic . I also had a brain bleed I'm my right frontal lobe which is why I have to take the the aspirin to prevent another clot and rupture from the FMD. It gets worse when I'm going to start my period also and I'm hoping that's why it's so loud right now.. I'm praying for a reprieve because I can't deal with this..

 

[Natalie Roberts]

Oh, sorry never read that part. She should go to hospital asap.

If you remember my tinnitus developed a little over two years ago during my last pregnancy and I finally demanded an mri because it didn't subside after delivery and I was having other neurological symptoms as well. Turns out I had had some sort of brain bleed In my right frontal lobe. They couldn't explain the cause and I've been to numerous drs, my last being a vascular neurologist who diagnosed me with a problem called FMD with my carodit artery. I have to now for the rest of my life take a baby aspirin everyday to prevent a clot from forming and causing another bleed , as they are guessing that's what happened last time. Also, I have to be monitored by MRIS every year at least to ensure that my carodit isn't worsening and there are no dissections or anyuerisms .. I'm really torn with the aspirin because I feel it has made my T worse slowly but my alternative is plavix which has other consequences .. also to add I only use Valium for MRIs due to my extreme anxiety from nose exposure worsening my T.. @Tinker Bell as you can see I'm a mess I really appreciate your kind words of support and advise.. as you know what it's like to deal with MRIs you can relate to what I'm going through..

 

[Natalie Roberts]

Im guessing you dont really know the real cause of the tinnitus? It sounds like it might just be a spike from the MRI. I feel like iv just been through a spike that lasted 4 Months and I'm back to sort of acceptable levels of T, that i used to consider silence or T id habituated unknowingly too. If you cut out the Asprin and stay away from loud stuff for a similar amount of time you will prob be ok. You probably already know to mask it and stuff. I feel like the best things for me these past 4 months its been, good food and vitamins, good exercise and good sleep. Baths and distractions and absolutely no loud noise above 70-80db. I went to a few places pubs and stuff for a few weeks after and it just made everything unbearable so i quickly learnt that noise is noise and my ears were not happy being stressed at all. It does get tedious when your constantly looking for something to stop your brain from exploding but anything to make your life easier and liveable is all you can do.

It was a battle these past 4 months for me but i do seem to be coming round from it. It can happen. Dont do anymore MRIs or Aspirins if you can help it. This experience in general for me has taught me not to put my faith in modern medicine what so ever, and sometimes especially in this case its better to take your own approach and find your own solutions to your issues than going by the book. Its a tough one when you feel like you should be able to trust doctors, 'they know whats best' but the fact is you just can't sometimes. I'm sorry your suffering, I'm sure it will settle down slowly just hang in there and be good to yourself.

I don't really know the cause.. they suspect it's related to my brain bleed somehow as all the symptoms started around the same time.. it was tolerable for awhile but lately has become unbearable and a struggle everyday .. I am struggling knowing what to do and try to trust my drs but they involve more ototoxic things like MRIs and aspirin :,( I'm only 33 and I can't live my life like this..

 

[just1morething]

To add: Noise exposure was the number one walk in complaint for T.

It sounds like HF hearing loss causes the brain to make a phantom noise. I guess we have all heard that before. It's really hard to tell if it's a physical or mental thing at times. I have TMD in left jaw and thought that was the cause but it could be phantom noise from the brain. Maybe something to treat OCD? It's very hard not to be obsessive about a foreign noise in your head/ears.

On the other hand I thought it takes quite awhile to treat TMD with a splint/appliance. I'm trying cold laser directed at the TMJ in addition to splint. It's very hard to have any patience with obnoxious noise that's for sure.

 

[just1morething]

I'm praying for a reprieve because I can't deal with this..

I hope you and the rest of us get a reprieve from this torment. It's like a broken record.

 

[Tinker Bell]

My baby is already 2.. my tinnitus has only gotten worse. I do have TMJ but it's treated and makes no affect. I actually was diagnosed with FMD and one if it's symptoms is pulsatile T but my tinnitus is not necessarily pulsatile but it is rhythmic . I also had a brain bleed I'm my right frontal lobe which is why I have to take the the aspirin to prevent another clot and rupture from the FMD. It gets worse when I'm going to start my period also and I'm hoping that's why it's so loud right now.. I'm praying for a reprieve because I can't deal with this..

I saw you mentioned worsening before your period. Mine does the same. Hormone fluctuations can cause headaches and migraines, so it's very possible that could be the cause of your T increase.

 

[Natalie Roberts]

Aspirin in high doses can cause hearing loss and tinnitus. From a brief google search, this seems to be a common symptom but it looks like tinnitus symptoms can decrease when the dose is decreased.

If you already have hearing loss, it's possible even a small amount could bother you. I was advised to avoid aspirin in any amount.

Why are you taking a low dose? Is there an alternative you can take?

I am taking 81 MG of Aspirin daily and ive been on it for about 6 months I guess. The reason I am taking it is because of my fibromuscular dysplasia in my carotid artery. Basically, the artery is wavy so your body thinks there's a defect there and tries to form a clot to fix it. When the clot breaks off you end up with a stroke. Hense the baby aspirin to prevent the clotting.. The only alternative would be Plavix or coumaden but he didn't want to use such aggressive blood thinners. However, I am young and my FMD diagnosis is MILD so I am wondering the risk vs benefit of stopping it.. I have already had one episode of bleeding and they're not sure what exactly caused it but believe it to be a combination of the FMD and my last pregnancy so they said as long as I don't get pregnant again I shouldn't be at a huge risk of a reoccurrence.. It's all very frustrating and I ,like you require multiple MRI's to rule out dissections of my artery and aneurisms as these are both complications of FMD.

I feel so lost right now. Thankfully, upon waking up it is a little quieter so far.. So praying its just hormonal..

 

[slipware]

If you remember my tinnitus developed a little over two years ago during my last pregnancy and I finally demanded an mri because it didn't subside after delivery and I was having other neurological symptoms as well. Turns out I had had some sort of brain bleed In my right frontal lobe. They couldn't explain the cause and I've been to numerous drs, my last being a vascular neurologist who diagnosed me with a problem called FMD with my carodit artery. I have to now for the rest of my life take a baby aspirin everyday to prevent a clot from forming and causing another bleed , as they are guessing that's what happened last time. Also, I have to be monitored by MRIS every year at least to ensure that my carodit isn't worsening and there are no dissections or anyuerisms .. I'm really torn with the aspirin because I feel it has made my T worse slowly but my alternative is plavix which has other consequences .. also to add I only use Valium for MRIs due to my extreme anxiety from nose exposure worsening my T.. @Tinker Bell as you can see I'm a mess I really appreciate your kind words of support and advise.. as you know what it's like to deal with MRIs you can relate to what I'm going through..

I go along with the theory of a bleed causing the tinnitus, as I had a bleed/clot on my brain stem, which has caused this catastrophic noise in my head. I now take warfarin every day, for life as m8ne was caused by an undiagnosed heart problem. I live with the heart ok, but the tinnitus is a demon I wouldn't wish on my worst enemy, (not that I have any). Keep going, it may not get better, but, like me, you will cope with it eventually.

 

[Starthrower]

I am taking 81 MG of Aspirin daily and ive been on it for about 6 months I guess. The reason I am taking it is because of my fibromuscular dysplasia in my carotid artery. Basically, the artery is wavy so your body thinks there's a defect there and tries to form a clot to fix it. When the clot breaks off you end up with a stroke. Hense the baby aspirin to prevent the clotting

My husband has been taking the same low dose baby aspirin daily because of his high blood pressure. His doctor said to take it at night. However, he had terrible insomnia and developed pulsate type and regular low tinnitus. I suggested he take it first thing in the mornings. For some reason both symptoms ceased when he took the aspirin in the mornings.

It does seem like this is very important to take for your situation. I hope your recent tinnitus loudness settles soon and be related to hormones at this time of the month.

 

[Natalie Roberts]

My husband has been taking the same low dose baby aspirin daily because of his high blood pressure. His doctor said to take it at night. However, he had terrible insomnia and developed pulsate type and regular low tinnitus. I suggested he take it first thing in the mornings. For some reason both symptoms ceased when he took the aspirin in the mornings.

It does seem like this is very important to take for your situation. I hope your recent tinnitus loudness settles soon and be related to hormones at this time of the month.

I was taking mine and night but now I take it mid day around lunch time to ease similar symptoms. My tinnitus is still loud ;(

 

[Natalie Roberts]

I go along with the theory of a bleed causing the tinnitus, as I had a bleed/clot on my brain stem, which has caused this catastrophic noise in my head. I now take warfarin every day, for life as m8ne was caused by an undiagnosed heart problem. I live with the heart ok, but the tinnitus is a demon I wouldn't wish on my worst enemy, (not that I have any). Keep going, it may not get better, but, like me, you will cope with it eventually.

Thanks for your words encouragement. I've been dealing with this for just now over 2 years and the first year was awful.. the second was better and now it's back to terrible.. i know there's a my tinnitus is overall worse than it used to be but it typically doesn't cause a panic reaction anymore luckily.. this last week however has been just awful.. I broke down crying last night because there's no relief.. I know there's hope at the end of the dark tunnel that we will adjust but it's been so long, and I've still not fully habituated

By the way, it sounds like you understand the brain bleed thing the same as me! How has warfarin been? Do you drink alcohol?

 

[Starthrower]

I broke down crying last night because there's no relief.. I know there's hope at the end of the dark tunnel that we will adjust but it's been so long, and I've still not fully habituated

Sometimes it helps just to talk about this.

 

[just1morething]

I have a neurologist appointment tomorrow and he has mentioned gabapentin can sometimes help, but I've also read it can make it worse..

Dr. Abraham Shulman talks about Gabapentin/Klonopin for central tinnitus. I don't know if it can make it worse though. I use to take that combination. Talked to him once in the past.

http://www.tinnitusjournal.com/articles/gabapentin-and-tinnitus-relief.pdf

 

[slipware]

Thanks for your words encouragement. I've been dealing with this for just now over 2 years and the first year was awful.. the second was better and now it's back to terrible.. i know there's a my tinnitus is overall worse than it used to be but it typically doesn't cause a panic reaction anymore luckily.. this last week however has been just awful.. I broke down crying last night because there's no relief.. I know there's hope at the end of the dark tunnel that we will adjust but it's been so long, and I've still not fully habituated

By the way, it sounds like you understand the brain bleed thing the same as me! How has warfarin been? Do you drink alcohol?

Yes I can have a drink, though I don't drink much at all anyway, never have, but I do have a home INR test kit, so I can know my readings at any time. I tried one of the new generation anticoagulants, but prefer to have control so went back to warfarin. Over here they tend to think full anticoagulation with warfarin or similar is preferable to just aspirin. I guess according to the need. My T is blaring today, but who knows, it may calm down a bit later, I've stopped fretting, it is a monster with its own agenda, and there's nothing I can do about it. It is what it is... dreadful, but life goes on... good luck, hope you get relief.

 

[Danny Boy]

I don't really know the cause.. they suspect it's related to my brain bleed somehow as all the symptoms started around the same time.. it was tolerable for awhile but lately has become unbearable and a struggle everyday .. I am struggling knowing what to do and try to trust my drs but they involve more ototoxic things like MRIs and aspirin :,( I'm only 33 and I can't live my life like this..

I feel really sorry, I take it they did an carotid IMT test too? Yeah, you'd be stuck on blood pressure med from what I'm reading.

 

[Danny Boy]

Dr. Abraham Shulman talks about Gabapentin/Klonopin for central tinnitus. I don't know if it can make it worse though. I use to take that combination. Talked to him once in the past.

http://www.tinnitusjournal.com/articles/gabapentin-and-tinnitus-relief.pdf

Gabapentin will help penetrate GABA medication. In my opinion, you have to look at the withdrawal symptoms which include tinnitus.

 

[Danny Boy]

I think she had the brain bleed in the past. Just wanted to add that there are reasons beyond a possible tumor to have an MRI. I have an elevated MS risk, so unfortunately MRIs will be a regular occurrence for me.

Wanted to ask, did gabapentin have any negative side effects for you? I'm wondering if it's a drug where there's no harm in trying it.

Not from what I remember and I was on the highest dose, however lyrica increased my tinnitus