Hello,

That is right, it is not either. For two and a half years of misery and 8 different doctors including an idot neurologist and a helpful but puzzled neurotogist, I searched and searched to find out what happened to me. I finally have an answer that ties my whole puzzle together and for once MAKES so much sense. I could never figure out why I never had spinning/moving vertigo in the beginning like most inner ear injuries, why all my tests were negative or pointed to my central system, why did I wake up with pain and pressure and no dizziness or vision problems until months into this nigthmare and why were my vision problems so different than so many others with inner ear problems (NO bouncy/moving vision) and there were so many other whys I could not explain to myself.

Then I was hooked on the migraine theory, but yet had so many whys with it that I just couldn't believe I had a virus/infection and ended up with all this horrible pain and pressure in my head for 2+ years now. I never or very rarely did I get headache prior to this and the headache were nothing like this. I started following a very strict migraine diet in January coinciding with coming free of the klonopin. I noticed improvement and thought the diet was really working. Yes it was in some ways, but not the sole reason for some improvement which I will explain later.

I saw the most wonderful headache specialist at UPMC (University of Pittsburgh Medical Center) this week who without hesitation knew what exactly happened. To top it off, I have never had someone listen to me, examine me or explain anything to me so well as this doctor and above all, I AGREE with his diagnosis 100%. It is something I thought about continually throughout all this, but wasn't sure if it was quite possible or even made sense.

I had brain damage from the allergic reaction (seven johnson syndrome) I had to bactrim (antibiotic) (Dec. 2004). Yep, my central nervous system sustained an injury. He has seen it before and says it is just like someone who was in a car accident only my damage was caused differently. He has seen it in patients with the flu or menegitis. He said these symptoms usually come out 6 - 8 weeks after the incident and bingo, my head problems started 6 weeks after the allergic reaction. The ear infection was only coincidental probably because of a weakened immune system at this point and it explains why I have symptoms in both ears and my whole head and not just the side with the infected ear. I know it sounds scary to think someone would have brain damage, but actually I feel like a ton of bricks have finally been lifted off my back. I now know what is wrong, what I need to do and there is no more researching inner ear stuff or migraines.

I made myself really ill 24 hours prior to the appointment and even contemplated on not going. I said to myself that I would not let any more doctors ever have the satisfaction of seeing me cry or treat me without respect. I went in and held my composure and told him everything and I didn't shed one tear. After he examined me, he took me into his office and sat me down to talk to me. He explained with confidence what he thought had happened. I remained calm. Then he said he has seen it many times and the prognosis is 2 - 5 years to make a full or near full recovery. I broke down. I never felt so much happiness in my life. Even at this point he was so conforting. He did tell me a few patients have gone on to have periodic headaches after the 5 year mark, but not to any agree like mine and never continous. Heck, I could even deal with a really bad one once in awhile if it means the other crap is gone.

Treatment: Nothing can heal me but time. There are no magical drugs. Migraine preventative will not work for my headaches as my pain is not migraine pain. Narcotics may help the bad pain, but we both agreed it wasn't a good option and I can handle the physical pain now. He suggested 250 mg of magnesium daily, 60 onc. of water daily, relaxation as to not over stimulate my nervous system, waking 30 minutes daily, regular sleep patterns every day and eating 6 small healthy meals daily. All this is good for the nervous system just as it is good for the migrainer not to rock the board.

He said I have been being treated the wrong way with the klonopin. Reason number one as to why I started to see some improvement in January/February as I was almost and then finally free of the klonopin. An antiseizure med would not be helpful with my type of headaches as they are not migraine and it stimulates the nervous system directly. He said the was why I had such horrible withdraw coming off it. He also believe how sensative my system is to meds. I told him how I reduced my klonopin at 1/4 tablet per month and he said that was a wise thing to do by coming off it so slow (just really followed Scott's advice on med reduction). To even think my neurotogist told me to decrease it by 1/2 tablet per week and then he told me to go back on it back in December when he basically told me he didn't know how to treat me. I wonder what my nervous system would have done if I took his advice.

He said with an injury like this, it directly affects your emotions. He said that is why one minute I am anxious to no end, then the next depressed, then the next day calm. He said it is one of the main symptoms along with the continous headache, dizziness and congnitive issue that I had in the beginning. He said typically the cognitive issues are really bad for the first 6 months then disapate. Everything connects directly to my symptoms even things he mentioned that I never told him about.

The second reason I started seeing improvements in January/February. Yes, even though I don't have migraine, the diet was helping some in that I was avoiding direct nervous system stimulants like caffeine, chocolate and my biggie one, I think, MSG. The doctor said go ahead and have a slice of pizza if it makes me feel good. It won't hurt (unless the sauce is plagued with MSG additives).

He does want me to go for a follow-up MRI, but that is only because mine is over 2 years old and because of my sister's tumor history. He said he does not expect anything to be wrong.

My head is vibrating, my ears are ringing, and my eyes feel heavy, but for the first time in a long time, I feel like I can smile a little. I know I still may have a journey ahead of me, but feel very positive about knowing that I can one day chase my little boy and swing him around and just love him feeling happy again.

I hope the old timers here and any one new reading this, doesn't ever give up there search to finding the cause of their head monster. I almost did give up and I am so glad I didn't. I feel so much more at ease even with the symptoms and now I have something to once again look forward to; life.

:angel:
Gloria

PS - At the end of my appointment with him, he said to me, WOW, you really know your stuff.;)

Gloria,
Wow! What a story! I was teary reading it. I am so happy you have found your answer. I hope you will find 100% relief soon.
It just goes to remind me what I have been seeing a lot in posts this week, it seems: Do not give up. Do not get so down by the ignorant doctors that you start figuring "what's the use". Do not just take what one doctor says when your gut is telling you something completely different.
Thank you for sharing your info with us all.

Hi Gloria,
I'm SO glad you got a doctor that listened to you and that could tell you what is really going on. I can't imagine your fustration going through everything you have been through. I did tear up reading your post, and I'm SO HAPPY that you will make a recovery. That over time even if it takes 5 years, you can and will feel better. It's scary to think that an allergic reaction to a medication can do this to someone. I'm so sorry for everything you have been through, but I'm so glad someone finally listened and could help you. Keep in touch with this doctor, he's definatley a keeper!

Congratulations on figuring out what is wrong with you, your persistence is an inspiration to everyone on this board. Just proves that you really have to be your own advocate, and can't always rely on doctors to tell you what to do. I'm so glad you kept pushing and that it finally paid off. I truly have so happy for you. Keep us posted on how you feel.
Much Love,
Joy

Good for you Gloria!! best of luck to you and I know time will soon cure all your symptoms.

JB

Hi Gloria

What a amazing story....good show & Congrats!!!!!!

:cool:

Hi Gloria and Board,

Heartful congratulations on being informed (finally) of a diagnosis. I find this thread not only uplifting, but helpful, as I have always wondered to a degree if my exposure to a CNS illness in my late 20's (Human Parvo Virus B) led me to developing my head symptoms, and accompanying, seemingly, neurological and cognitifve issues.

I live in Rochester, NY, but there is a University in Buffalo, NY that studies Human Parvo Virus B. More than a few years ago, I called this University out of desperation to talk with someone about my symptoms; even though this University is only a few hours drive, at the time, THAT felt imposssible. THey were highly interested in meeting with me, but I declined based on how I was feeling. They would not speak with me over the phone (sigh).

My point being that although I did not know much about this CNS illness at the time, after I was recovered enough to read up on it, I found out that among other things, this was a very impacting illness and in some situations, could lead to death. I was mainly affected rheumatically - I had severe joint pain and swelling in the connective tissues and when I would get a "flare up", the lining of my lungs would also be impacted so it felt funny when I drew a breath. I had severe flare-ups for years, and this resulted in weekly, monthly, and yearly blood tests to determine where my white cell count was, until I felt better and had less symptoms. I was very ill for about one year, and the other symptoms lingered for YEARS.

My head symptoms started up about ten years after that. I am not sure how Human Parvo Virus B travels in the system, so I am not sure of the long-term or residual effects.

My own primary doctor did not even know about this illness, nor did the rheumatologist think to test me for it initially, until I found out that another peer at work was also ill, and a specialist who looked at her had HER tested. I tested positive after I told my doctor to test me.

A few years later, when I was still having problems as a result of this exposure (I worked in a rehab setting where two children carried it), I contacted the lady whom I worked with who also was exposed - her symptoms cleared up and she never had any lingering problems.

I go into detail here only on the chance that someone may be able to dig up more information on Human Parvo Virus, or maybe someone else had a similiar exposure.

I am going to contact a few professionals on this angle, as it deems looking into.

xo

Yay Gloria!!

I'm an old timer, and I remember you. I'm SOOOO happy for you. Isn't it true that even if you still feel crummy, just knowing what the problem is can make all the difference in the world?! Once you know what you're up against and how to deal with it, it's somehow bearable. I wish you all the best on your road to recovery.

Terri

Great News Gloria!

Having a precise, or much more accurate DX, certainly is the first and most important step towards recovery.

Brain works wonders, and it's the main source for compensation in all kinds of CNS, Brain, or Inneri Ear dizziness, as you may know well, so, discarding MAV, and CN, concentrting on this newy found cause, will surely give you the edge, aiming for a total, and hopefully soon recovery.

Somehting I've learn here is how important an accurate Dx is.

I believe that "pure" BPPV, VN or Labs, really gives you no trouble, or almost none resident symptoms after some months.

In all long term cases 1 year or more, it's almost certain that there could be an added cause, or another cause for dizziness, which could be MAV, or other stuff like the Subs' eye's trouble, dizzyrascal's migraine factor, or now in your case, something else.

It might be a hard road, but there is light at the end of the tunnel in many forms, so, glad to see you found yours, keep it up!.



The key is finding out what is wrong, to treat it properly.

Hello Gloria!
What a wonderful thread. I really had tears in my eyes and shivers down my spine while reading this. Im so amazed and pleased, I would just love to give you a big hug right now! The fact you saw a specialist who was so confident in the diagnosis, that he knows whats wrong and could give you information about what and when you might be recovered is fantastic. It gives so much hope and confidence about the future.

I am ok, just starting to pick up the driving again. Having a hectic weekend. Happy Easter!
xxxxxx

:blob_fire (thats you jumping round in the future!)

Thank you all for your kind words!

Mentally, I had a good past week and even managed to help out in some household remodling. Just shows how much stress can push you over the edge and when some is lifted, you can do anything (well, just about anything).

Treefarmer:
Nice of you to pop in Treefarmer. I remember you well as you were one of those little rays of hope I held onto for so long. It is always nice to have you stop back in since your recovery to provide so much inspiration to others. It is also good that you are still doing quite well. It is great to have people like yourself and Subs and Lizzy continuing to help others after your own full recovery.

JB:
Hello......just wanted to tell you one of the things my neurologist suggested that would be a major contributor to my recovery was the magnesium. I had been taking it, just not a high enough doseage. He recommended 250 mil. two times a day. I think that is what you were taking too. I hope you are still doing great!!! Once I am back to normal, I'm going to make it in to the big city and challenge you to a game of Squash.


Stargrave:
I believe that "pure" BPPV, VN or Labs, really gives you no trouble, or almost none resident symptoms after some months.


I agree full-heartedly. I think that is what bugged me so much with all of this for the past 2+ years. It just doesn't make sense as to why some recover 100% and others, something just lingers on. Seems that cases like subs and treefarmer and a few others were so clear-cut inner ear and now they are 100%. There just has to be other stuff going on with people that have had this for years. I can see having reoccuring relapses for a while afterwards, but this everyday, getting no better, and feeling dizzy continuously just doesn't make sense with a vestibular injury.


Tesss.....hope to chat with you soon once things settle down for you. I'm glad you are moving along and way to go with the driving. Love the little jumping blob.....I can't wait to feel like that again!



Lastly, Wowwwweeee. I thought about you lots of times prior to my appointment last week as my heart aches for you that you have dealt with this so long. I honestly believe that thinking of living like this that long really pushed my butt into that doctors office last week after I contemplated on not going. I truly believe there is a reason for everything and really think that maybe you should start up your search again after so many years. I think one key to this problem is finding someone who is willing to listen and help you get to the bottom of this. This is not something you were born with so it is highly possible to get rid of it. There are people who are told they have a week or two to live and in that week or two turn their whole lives around and get better and go on to live for years. You said yourself that you saw that your symptoms can go with the AMI. Maybe that just wasn't the right drug for you. Perhaps it is time to try something else again. I am in no means saying that a drug is the right way to go (mine was the cause of a drug), but something needs to be done so that you can live a better life. I hope that you consider giving another go with doctors and that something pans out soon for you. You are a strong person (anyone who can work with a head like this is a tuff cookie) don't give up. I'm wishing you well. Just as our sloggan says "You've got a friend in Pennsylvania". I belive you can beat this!!!