Extreme tinnitus / whooshing rendering unable to function at all.

[CallieAndToby]

I have not been on the forum in a long time because I have continued to decline. Again, this decline started after the use of a cancer medication that suppresses and alters the immune system; it depleted my white blood cells for a couple months. I have uprooted my entire life to move to a big city and nobody is listening about the seizures, myoclonic movements, movement disorder, convulsions, inability to be upright, AND NOW for the past 2 weeks I've had constant bilateral whooshing / tinnitus in both ears but it gets substantially worse when upright and my body is trying to produce more adrenaline and it's completely wrecked my sleep. 

I have seen neuro after neuro and they keep referring me to POTS doctors which would require me doing autonomic testing all over again and I simply cannot be upright for more than a few minutes and I had the testing done 3 months ago at UAB. I saw an ENT yesterday and he found some interesting things but tinnitus is considered some ear problem though I can hear it reverberate through out my brain and it's constant and loud and it has really crippled me. I have been falling a lot lately too. I fell twice in the kitchen, once on the hardwood floor, in the bathroom I hit my shin and really hurt myself, and I was sitting on a stool for only 3 minutes and passed out and hit another stool then the floor. We had to beg my cardiologist for midrodine and I failed the trial with the medication; my reaction after only taking 1.25 mg was falling asleep (my mother an RN monitored my BP and it was fine) then all day I'm laying there and it did not help me be upright though helped the tinnitus a bit, so then I try a tiny little piece of the 1.25 and it did the same thing made me tired and when I come off of it it's horrible.

I have an appt at UAB but I'm extremely sick and I don't know if they have anything to offer other than the typical autonomic meds. I truly believe something is underlying the POTS and causing the dysautonomia and that was worsened with immunosuppression, I can't get anybody to even do a lumbar puncture and check for an infection, I don't know what to do plus back when I was in my 20's I had a PET brain scan done at NYU and it came back highly abnormal but nothing really came of it in terms of a diagnosis. When I worked with Dr. Thompson he was great but I failed every medication or supplement he tried meaning I had some crazy bad side effects or reaction. I've really only responded well to the saline iv's and I can't get them often enough and the past two times at a major medical center here they had to get somebody to use an ultrasound just to find a vein (they told me they were super deep, tiny, and moved around and twisted a lot). 

The local oncologists don't know why when I took the cancer medication for only 3 months it destroyed my health but mainly autonomic nervous system, I wish I had answers, the stress and anxiety is bad and I have continually declined so I am in belief there is some sort of infection per research the medication is known for causing infections or reigniting "silent infections". The doctors will listen and say yes that's a possibility then I get referred to yet another POTS doctor, I should mention that my cardiologist is scared to do anything because he wants a neurologist to look into the seizures, etc. I was literally doing my normal routine when 2 weeks ago the tinnitus started and has increased in intensity, it is hard to hear and I have worse headaches and brain fog. I have read other topics and a lot of dysautonomia folks complain about tinnitus but does anybody know why it happens and what to do? 

 

[Pistol]

@CallieAndToby22 - I am so sorry you are suffering like that! 

2 hours ago, CallieAndToby22 said:

so I am in belief there is some sort of infection

Usually if there is an active infection there is evidence of that in your labwork. I have had abnormal labs for past 2 months showing an infection but they cant find it. I am in hospital now for sepsis. The only reason I am telling you this is to assure you that any infection should be noticeable in your lab work, like CBC, ESR, CRP etc. And I am sure your docs checked al that often. Also - a lumbar puncture is a risky procedure and they will only do that if there is evidence of an infection. --- I hope they will be able to help you at UAB! Hang in there!

[Rexie]

CallieAndToby22 - sorry you’re still miserably suffering. 

Has anyone tested you for Small Fiber Neuropathy (SFN)? It can be cause by cancer and the neurotoxic effects of some cancer medications. It can cause all these symptoms you are having. 
Skin biopsies for assessment of epidermal nerve fiber density (ENFD), sweat gland nerve fiber density (SGNFD) and functional autonomic testing (deep breathing, Valsalva maneuver and tilt test) can assess SFN, as well as the severity of the associated dysautonomia and cerebral blood flow abnormalities. Heart rate, end tidal CO2, blood pressure, and cerebral blood flow velocity (CBFv) from middle cerebral artery using transcranial Doppler can also be tested. 

If SFN is what you have, treatment options are good and bring good results. 
You should follow through with the upcoming appt. at UAB even if you are half dead and ask about SFN. You could write your questions out beforehand and hand them over if you are in a bad way during your appt. It is often useful if docs get to see you at your worst. Then again, sometimes not. 

Tinnitus, for me, was horrible the first year after HSV-1 encephalitis back in 2012 and added to my feelings of craziness. It has lessened but is still there - I just don’t pay attention to it now. It, at least, won’t kill you and seems to crop up here and there with lots of ailments and health conditions. 

Pistol – so sorry you are back in the hospital. Hope they fix you up soon! 

Both you gals hang in there! Let us know how you are doing. 

[MikeO]

I do get the Tinnitus in my left ear. Seems to eb and flow in intensity. Not sure what the origin is but seems to be related as to how i feel. What i am sure of it is vascular related, when i have a skipped heart beat or a heart pause it stops. What does help is some type of white background noise (radio, TV, streaming old time radio shows while sleeping)

Hang in there Girl there's light at the end of the tunnel.

@PistolI hope your team gets to the root of the issue,

 

[CallieAndToby]

1 hour ago, Rexie said:

CallieAndToby22 - sorry you’re still miserably suffering. 

Has anyone tested you for Small Fiber Neuropathy (SFN)? It can be cause by cancer and the neurotoxic effects of some cancer medications. It can cause all these symptoms you are having. 
Skin biopsies for assessment of epidermal nerve fiber density (ENFD), sweat gland nerve fiber density (SGNFD) and functional autonomic testing (deep breathing, Valsalva maneuver and tilt test) can assess SFN, as well as the severity of the associated dysautonomia and cerebral blood flow abnormalities. Heart rate, end tidal CO2, blood pressure, and cerebral blood flow velocity (CBFv) from middle cerebral artery using transcranial Doppler can also be tested. 

Nobody has ever tested me for small fiber neuropathy even though I've been in horrific pain since I was a teenager! I've had other autonomic testing done (not everything you've mentioned) but with a positive TTT and Valsalva but the medications don't help or the side effects are so brutal I can't take them. IVIG helped in the past but not significantly and nobody will order saline infusions or a port. I really want to know what the cancer medication did to me! I have tried increasing fluids with salty water and I just go to the bathroom more and more and it totally disrupts my rest and sleep. I've had major bladder issues since I was a young child and I've received all sorts of diagnoses but with IC I'm definitely on a very strict and boring diet but I'm not on anything for pain because of all the restrictions. I have also been treated for encephalitis which is why I got the short trial of IVIG (years ago) and I had a lumber puncture done at that time at NYU and the PET brain which like I mentioned earlier, came back highly abnormal. It seems quite torturous to travel to UAB just for the small fiber testing, can't somebody locally do it? Thank you for your kind response. 

[Rexie]

CallieAndToby22 wrote: "It seems quite torturous to travel to UAB just for the small fiber testing, can't somebody locally do it?" 

It seems torturous sometimes to me just to go grocery shopping (which I absolutely must do today), much less travel to Dallas for further testing at UTSW, so I know where you're coming from. I have an upcoming PCP appointment in 10 days during which I will ask about getting a skin biopsy done in my town. I have a medical coordinator contact at one of our local hospitals who might be able to help. How hard could this be? Results could be sent to the neurologists. 

I had Lyme disease for 16 1/2 years and it almost killed me. There is a condition called post-treatment Lyme disease syndrome (PTLDS)* that is defined by fatigue, cognitive complaints and widespread pain following the treatment of Lyme disease. It is associated with small fiber neuropathy (SFN) manifesting as autonomic and sensory dysfunction. I’d be interested in learning the state of my small fibers. Like you, I need some answers to help better manage my current situation. I have had autonomic testing done at UTSW-Dallas which showed abnormalities. 

For me there is also postherpes simplex type 1 neuralgia – feels like all my nerves have been gone over with a cheese-grater every time I have a breakthrough fever blister (like now). Also some neurologists have suggested a possible diagnosis of Myasthenia gravis (MG) but AChR antibody tests have been negative. However, none have ordered an anti-MuSK antibody test, the other version of MG which is more consistent with my symptoms and history, especially since I have lab test confirmed striational antibodies. I want this test ordered, or can have it done myself. MY endocrinologist wants me to see a cardiologist but the last time I went that way nothing was done except to suggest I drink more fluids and stay with increased dietary salt (heart was apparently fine then, as per echo and other tests). So, I know how frustrating and scary life must be for you. Maybe we can both learn some things to share. 

*Association of small fiber neuropathy and post treatment Lyme disease syndrome, Peter Novak, Donna Felsenstein, Charlotte Mao, Nadlyne R Octavien, Nevena Zubcevik, PLoS One, Vol. 14; 2019
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0212222 

[MomtoGiuliana]

I get bad tinnitus and other sounds in my ears when POTS flares up.  I think it can be part of POTS.  But this symptom was particularly bad when I was diagnosed with low B12.  Ever since taking B12 this symptom has improved for me.  Just a thought for you.  I am sorry you are having such a hard time.

Pistol--I hope you are better this evening.

[CallieAndToby]

On 10/31/2021 at 12:31 PM, Rexie said:

CallieAndToby22 wrote: "It seems quite torturous to travel to UAB just for the small fiber testing, can't somebody locally do it?" 

It seems torturous sometimes to me just to go grocery shopping (which I absolutely must do today), much less travel to Dallas for further testing at UTSW, so I know where you're coming from. I have an upcoming PCP appointment in 10 days during which I will ask about getting a skin biopsy done in my town. I have a medical coordinator contact at one of our local hospitals who might be able to help. How hard could this be? Results could be sent to the neurologists. 

 

I have to order groceries to get delivered, just a thought for you, it is definitely easier to choose everything on the apps and have it delivered to your front door.

[CallieAndToby]

20 hours ago, MomtoGiuliana said:

I get bad tinnitus and other sounds in my ears when POTS flares up.  I think it can be part of POTS.  But this symptom was particularly bad when I was diagnosed with low B12.  Ever since taking B12 this symptom has improved for me.  Just a thought for you.  I am sorry you are having such a hard time.

Pistol--I hope you are better this evening.

Thanks. I've been taking B12 every morning for awhile and methylfolate at night but I haven't had any labs done in a long time so I really don't know where I'm at with anything though many months ago my folate was very low and the prescription folate (non methyl) didn't do anything to raise numbers. I wonder about my iron because I only eat fish. The cancer I have is chronic so it raises my platelets too high and I have no idea where they are in terms of numbers....... The issues presenting are that they now have to use an ultrasound to find a vein (which has only been available at mayo) and once a young woman had a vein finder for my hand (ugh), so the basic labs around here can't do it and then after I lose blood I get very very sick and it takes awhile to recover. Does anybody know why some patients get sick after losing blood while others feel better? I remember this discussion years ago on a young adult mostly ME site and nobody seemed to understand this issue. 

[MomtoGiuliana]

17 hours ago, CallieAndToby22 said:

 Does anybody know why some patients get sick after losing blood while others feel better? I remember this discussion years ago on a young adult mostly ME site and nobody seemed to understand this issue. 

Do you mean losing blood from having your blood drawn for tests--or are you referring to more significant blood loss?

There is the vasovagal reaction which some people have from the procedure.  It can be short lived but also can be quite severe in some patients from posts I have seen in the past here.

[MikeO]

I have had some difficult blood draws in my lifetime (hard to get a good vein) but the phlebotomists always manage to find a vein that can be used. I have never felt ill with only a few vials of blood being drawn. I did give blood once at the red cross and felt a bit lightheaded but, that is more blood that what is normally taken for tests. As MomtoGiuliana mentioned some folks will have a vasovagal response (i have seen a person pass out in the stall next to me once).

Back in June when i had a big flare up and ended up in the ER i was hypersensitive to the venipunctures (they hurt really bad) I felt bad for the RN's because they had to hold down my arm to get the needle in. They also could not find a good vein in my arm so they used the one on the back of my hand.

I know hydration can affect how well a vein presents itself as well. The effect of chemotherapy on the body. “Chemotherapy really riddles the veins. It makes them difficult to find also.

[CallieAndToby]

18 hours ago, MomtoGiuliana said:

Do you mean losing blood from having your blood drawn for tests--or are you referring to more significant blood loss?

There is the vasovagal reaction which some people have from the procedure.  It can be short lived but also can be quite severe in some patients from posts I have seen in the past here.

Yes losing blood. I don't have any issues with seeing blood, needles, etc. The last test they did was at Mayo Clinic to completely rule out adrenal insufficiency and I had to sit up for far too long and they took about 8 vials of blood which resulted in myoclonic movements and movement disorder in the exam room. It usually takes days to recover from losing that much blood. I guess I'll discuss it with my oncologists in the future. A lot of my ME friends have the same issue. 

[Nin]

You sound a lot like me. I haven't had a seizure in a while, I do get myoclonic movements out blue. I even get these tic like things. The tinnitus is in both ears, I can't tilt my head to the left because of the whooshing. I have got problems with my ears but this has gone to the temporal bone and I may have some bone missing im not sure yet. Had a ct scan a couple of days ago so will discuss the results with ent. I wonder if you need a scan of the ears/head.

 

[Nin]

Hope you recover soon pistol.

[CallieAndToby]

On 11/3/2021 at 7:30 PM, Nin said:

You sound a lot like me. I haven't had a seizure in a while, I do get myoclonic movements out blue. I even get these tic like things. The tinnitus is in both ears, I can't tilt my head to the left because of the whooshing. I have got problems with my ears but this has gone to the temporal bone and I may have some bone missing im not sure yet. Had a ct scan a couple of days ago so will discuss the results with ent. I wonder if you need a scan of the ears/head.

 

Thank you for your response. I'm supposed to get testing soon with ENT. One thing I've noticed is that vasoconstriction of the brain lessens the tinnitus where-as Vasodilation makes it much worse. Have they discussed treatment options with you? And yes the movements and neurological problems are beyond frustrating and to not get any answers.

[MikeO]

2 hours ago, CallieAndToby22 said:

Thank you for your response. I'm supposed to get testing soon with ENT. One thing I've noticed is that vasoconstriction of the brain lessens the tinnitus where-as Vasodilation makes it much worse. Have they discussed treatment options with you? And yes the movements and neurological problems are beyond frustrating and to not get any answers.

I did notice that when taking Pyridostigmine that my tinnitus lessened. One of the functions of the drug is that it does assist with peripheral resistance. Might be onto something here. 

[Nin]

On 11/5/2021 at 5:47 PM, CallieAndToby22 said:

Thank you for your response. I'm supposed to get testing soon with ENT. One thing I've noticed is that vasoconstriction of the brain lessens the tinnitus where-as Vasodilation makes it much worse. Have they discussed treatment options with you? And yes the movements and neurological problems are beyond frustrating and to not get any answers.

The only treatment would fix any missing bone. But he did say going into the head comes with risks and I will need to discuss the risks. Problem is I might cause more harm having more surgery. Then if I don't I will have to live with the buzzing/ringing in ears, my eyes being messed up, can't bend forward, can't look up. Lights are also a nightmare for me. Problem is some of my problems might be pots when I think its my ears causing them. Just so hard to answers!

[CallieAndToby]

On 11/5/2021 at 4:49 PM, MikeO said:

I did notice that when taking Pyridostigmine that my tinnitus lessened. One of the functions of the drug is that it does assist with peripheral resistance. Might be onto something here. 

I would love to try mestinon!! Thanks for letting me know things lessened in terms of tinnitus. Mine has been getting worse and just no sleep. This is all so complex. 

[Guest KiminOrlando]

My tinnitus is flaring right now too and I'm falling more too. I currently have two sprained ankles and a swollen knee. I'm in a walking boot on one foot, an ankle brace on the other. I don't know what to tell you. I haven't found a solution either. The screeching in my ears needs to stop. It is almost disorienting. It never goes away. There are just varying degrees of loudness. It is very loud right now. Hope you figure something out. 

[Guest KiminOrlando]

@CallieAndToby22 When you went to Mayo FL, were you able to see Dr. William Cheshire Neurologist? He is well respected in the Dysautonomia community and well published. Honestly, he is the only Dysautonomia doctor I have heard recommended, but he is very hard to get in to.

[Pistol]

6 hours ago, KiminOrlando said:

I currently have two sprained ankles and a swollen knee.

So sorry, @KiminOrlando! Wishing you better days ahead!

[CallieAndToby]

On 11/13/2021 at 10:10 PM, KiminOrlando said:

My tinnitus is flaring right now too and I'm falling more too. I currently have two sprained ankles and a swollen knee. I'm in a walking boot on one foot, an ankle brace on the other. I don't know what to tell you. I haven't found a solution either. The screeching in my ears needs to stop. It is almost disorienting. It never goes away. There are just varying degrees of loudness. It is very loud right now. Hope you figure something out. 

The tinnitus is getting worse and it's causing a lot more adrenaline surges. I'm just not sleeping much at all and cbd was the only thing to get me any sleep but it has quit working and I've tried other brands and they don't work (only 2 have worked in the past year). This is all so scary. I'm sorry you're falling, it's just awful, I thought I'd fractured my shin because I fell and hit it so hard but luckily it was just bruised terribly which isn't that great either. I hope you heal quickly. 

[CallieAndToby]

I have severe sinusitis that could be the cause of sudden pulsatile tinnitus onset. I'm extremely tired and extreme eye pain and pressure behind eyes and headaches. I'll have to focus on just recovering from this with antibiotics and rest. I've also had a lot of coughing but my covid test was negative. The physician was really nice and suggested a lot of at home remedies including a neti pot and certain teas with honey.