Hi everyone!
I haven't posted in a very long time because I have been doing quite well, and you know how supersticious it can be posting a positive post. I'm gonna do it anyway. I want to help those of you who feel like you will never recover.
I was right were you are. BIG TIME! I got dizzy 4 1/2 years ago. I was so dizzy, so badly for so long that I could barely stand it. I had a lot of the usual tests, MRI, blood tests, rotational chair, etc, and I never did get a true diagnosis. My opinion now, is that it must have been some kind of a virus...or possibly BPPV. Heck, maybe even MAV...but I am now leaning towards the virus probably more than anything else.
I just want to be a ray of light for those of you who are suffering. I want to let you know that it is possible to get better. It is slow slow and SLOW going. There are days where you are almost back to normal, and then bang, you are bad off again. But s-l-o-w-l-y over time you will get better. It may happen in a couple of months, or in a couple of years. But you will get better. Hang on!:angel:

Suzy so gald you are better...can I ask you how long you felt dizzy!

Bravo!:cool:

Hi Suzy,

Good to hear from you again and better yet that you are doing so well. I always wonder about those who I haven't heard from in a while. My doctor gave me a 2 - 5 year prognosis. He says he has seen this all before and from his experience he believes it to be damage to the CNS caused by viruses/infection or in my case a very severe allergic reaction to an antibiotic taken for a sinus infection (1st and only sinus infection I ever had). I do remeber how ill you were in your posts so it is very encouraging. Thanks for posting.

Best,
Gloria

Great to hear from you too!
I do hope you are feeling better also.

In regards to the question about how long I was dizzy for...it is hard to say exactly because it would get a bit better, and then worse again. It was also so horrible in the beginning, that lasted about one year, then in year two a slight inprovement and this is year 4 1/2 and I am at about 98% normal. It was slow going, but I got here. I pray that someday soon I will be back to 100%.

It is such a slow healing that many get worried that they will never be well again. I just ask that you try not to worry and it will come.

Hi Suzy,

I was wondering if you took any meds during your 4 1/2 year ordeal? I am a little over the 3 year mark and like your recovery history, have had gradual improvement along the way but still suffer relentlessly every day. I am considering an AD but don't want to cause any other problems or somehow possibly slow my recovery process down.

Thanks,
Gloria

Hi Gloria, well I did start taking a beta blocker just over a year ago. I had some migraine problems as well as a fast heartrate so I figured I'd try it. That may be part of my recovery. I also take Gingko every day. I think it helps because when I ran out of it and didn't take it for a few days I started to get dizzy. I also take vitamin b complex, vitamin D, and Magnesium.

Hi Suzy,

Did you notice your biggest improvement with the beta blocker? I wonder if that is what got you to feeling normal.

Good luck; it must be great to feel somewhat normal again.

:angel:

awesome! thanks for posting.

can you swim and do what you used to be able to do?

i just want to swim again

i just want to swim again

What bothers you when you swim?

I was waiting for that. ;)

Hi Gloria, well I did start taking a beta blocker just over a year ago. I had some migraine problems

I was waiting for that.


Me too. That is why I kept poking at the questions (lol).;) I want to know what makes people better and it seems to be either a beta blocker or SSRI.

Adam - have you seen any links in migraine to low seritonin levels. I just recently started a SSRI. My neurologist seems to think my injury changed my brain chemistry and my seritonin is low. He says he's seen this before and by increasing the seritonin, my symptoms should diminish. I'm not questioning his diagnosis as I feel pretty confident with this doctor, finally. A converstation between Howie and Scott and what this doctor said got me to thinking about my case and about how when Scott increases his SSRI the symptoms seem to settle.


Also, I'm just curious about weather or not you actually feel your tinnitus?


Thanks,
Gloria

Hi Gloria

Noone knows - serotonin is just part of a very complex picture. People also mention blood vessel spasms (vasospasm) - but again - this is also just another piece of a jigsaw puzzle that we haven't unravelled yet. The real answers will come out of genetic studies which UCLA are doing - once they find the causative genes for these migraine syndromes they'll be able to determine the functional problems that these genes cause at a cellular level and why the functional problems cause the symptoms they do.

To be honest I don't believe "brain injury" is a fair diagnosis to give someone suffering from dizziness. Many people develop MAV after a head injury, even a minor one - and I don't think it necessitates "brain damage". It sort of throws it into the "can't do anything about it" basket - and yet he is offering you an SSRI which are commonly used as migraine preventatives. Sure - the brain injury may have been the provoking factor, much as hormones are for others, but the middle link in the chain is migraine.

I look forward to hearing your results on the SSRI.

Can't say I feel my tinnitus, but I definitely feel ear pressure at times. We're all different with these symptoms though - there is probably many many different low level causes of this stuff, hence why we all respond to different drugs etc. Anticonvulsants have been the best for me, but others do well on serotonergic drugs.

Adam

Thanks for your input Adam.

To be honest I don't believe "brain injury" is a fair diagnosis to give someone suffering from dizziness. Many people develop MAV after a head injury, even a minor one - and I don't think it necessitates "brain damage". It sort of throws it into the "can't do anything about it" basket - and yet he is offering you an SSRI which are commonly used as migraine preventatives. Sure - the brain injury may have been the provoking factor, much as hormones are for others, but the middle link in the chain is migraine.


I don't doubt his diagnosis but it does comlicate the whole migraine phenom more. I've talked to others who have had things from strokes, to AVM's to physical head trauma's and of course migraineurs and all the symptoms are the same; ear symptoms, tinnitus, headaches, dizziness, and other neurological problems. It all gets very confusing and throwing in the fact that I never had a migraine in my life prior let alone any of the other symptoms and absolutely no know history in the family dating back a few generations. I can't help to think this all came on after one major event in my life; the Steven Johnson Syndrome. Then you thrown in the vasospam theory, it gets even more complicated for my own situation.

I've also tried Buccholtz diet for almost a year with no food triggers contributing to my situation. I know that it is said that for some food doesn't trigger the migraine. Do you find any food triggering your symptoms?

The doctor (therapist) I am seeing for biofeedback has a background working with migraineurs and says that he has seen a lot of patients with migraine after injuries. He says they call them post migraines. My neurologist called them post traumatic headaches. Perhaps I am understanding my neurlogist to not meaning migraine because he is calling them post traumatic headaches but really he means migraines as a result of the brain trauma. I never really thought about it that way or asked him. He did tell me that most migraine food triggers won't make a difference for me other than things that affect the CNS like caffeine/alcohol, etc. Could be his thinking is perhaps the theory that you believe that it is a neurological condition and not so much vasospasms which may be why his thinking is not to use a beta blocker in my case because it has nothing to do with blood vessel spasms. Hmmm, I think I will write this down for my next visit with him for some more clarity.

I suppose one may never know and the only thing left is to try some of these meds that seem to help others in my shoes.

and yet he is offering you an SSRI which are commonly used as migraine preventatives

He did tell me that he prescribes these to help with the dizziness and headaches as he has found them to help greatly so yes I do assume that was his main intention. Probably seemed a good choice for me as my depression has been very bad. Just too long to deal with this crap!

Interesting about your tinnitus as I think sometimes that is the biggest symptom I am dealing with and if I didn't have it, I could move forward. I feel what ever is making the noise and wonder if it could be I suppose time will tell if the TRT will be a success for me.

Well now that I probably confused myself more, I am going to go.

Thanks again,
Gloria

Sorry Suzy for taking over your thread, but you brought up a good topic on getting better and the whole migraine phenominom.

It is all a mystery. I had migraines since I was 18 and I got hit with the dizzys at 33. I still find it hard to believe that the migraine was the cause of the dizziness. I was hit so hard and so abrubtly, that it really seems like it was a virus. Either way, I thought I would give the beta blockers a try. Since I had migraine anyway, plus a fast heart rate, I felt it would help these symptoms if not the dizziness. I was already on my way to recovering before starting the beta blockers. I was probably at 80% before starting them. I'm sure they do help. As does the Ginko. It sometimes seems to me like it is just something that needs to "burn itself out". I'm still not 100%, but pretty darn close!
I want you all to have hope.

Funny you say that Suzy, that is how mine started...blam...room spinning. Diagnosed with vn...then 3 weeks ago, the specialist at mass eye and ear said that migraine can do that very thing. Can hit you just like a virus does. He believes I never had a virus..but we do testing in February.

Also I have met another woman who this happened too the very same way. Room spinning for 24 hours. Had an eng...no damage found. She was diagnosed with migraine too.

In the book Heal your Headache...he also talks about how tinnitus, ear popping, fullness, pressure, loss...can all be caused by migraine.

Gloria....maybe your triggers are not food related...they could be stress related, or as the book says...triggered by some medication.

I think you are doing the right thing.

hey suzy what are you taking the beta blockers for and how long did it take to kick in. I have on a beta blocker so I was just wondering

hey suzy what are you taking the beta blockers for and how long did it take to kick in. I have on a beta blocker so I was just wondering

I've been taking metoprolol for just over a year. I am taking them as a migraine preventative, and to slow my rapid heartrate down. My resting pulse used to be around 115 beats per minute.

I'm not sure how long it took for the beta blockers to kick in for the migraine...but they work to slow my heart down in about 1 hour after I have taken it.

Ok i was just wondering. I am taking amitriptyline, coreg and midodrine for autonomic dysfunction. My resting heart rate varies from 58-100. It's nuts so that's why I was wondering. Thanks for the response