Hi there,

I think your neuro appointment was today? How did it go?

best,

Hi hbep,

I was thinking about you the last few days and how your appointment went on Monday. I couldn't wait to tell you about my appointment too. My computer was down since Tuesday and prior to that I didn't want to come on the boards as I was already feeling ill about the appoinment and wanted to leave the boards with the last bit of advice and support you gave me as it made me feel calm.

I won't go into detail on this post as I left a long one explaining it all and I am feeling somewhat happy now and feel as if a lot of stress has been lifted.

I am so thankful I took your advice with the Heal Your Headache book even if it has turned out not to be migraine, I think the book has helped me in so many indirect ways. I think it has been the book and some advice from you and Howie that made me look into a new neurologist (headache specialist). I feel very blessed I found a great one. Afterall, it was post-traumatic headache just not migraine and definitely not inner ear related at least to the most part.

How are you feeling this week? Have you noticed any new improvements? What did your doctor think was going on now?

I hope you are doing well and thanks for thinking of me and remembering my appointment. Keep me posted on how your feeling.

If you celebrate Easter, I hope it is a blessed one.......Gloria

Hi Gloria,

Wow, just read your post re the appointment. Amazing to see a great doc who really knows his stuff and finally get a definitive diagnosis. I know how comforting that is - to just know for sure what is going on makes it all so much easier to cope with. I am so happy you've been given peace of mind and also that it's good news - you are on the road to recovery and will feel well again.

As you say, it is always, always worth continuing to look for answers if someone is unhappy with their diagnosis or isn't getting better etc... Like you I saw some doctors who were both rubbish and horribly unsympathetic bordering on cruel, before I finally found the right doctor.

I saw the neurologist on Monday - to be honest he confirmed what I already know, this is definitely migraine - the light sensitivity 24/7 is a big give away with me. It is totally typical of migraine. He was perfectly nice but not that up on dizzy issues. It was a bit dissapointing but at least I was feeling better by the time I saw him so didn't feel as desperate as I did before. He said it can take a while for the increased drug dose to kick in and encouraged me to also take co enzyme Q 10 which they have trialled and shown works as well as some of the drugs for migraine. I didn't really expect a magic bullet from him. Recovery is slow but touch wood it is happening. It is just taking a long time this time but at least I can leave the house with my shades on without too many problems now. I am getting periods where I feel much more normal. And I had a weekend where I went away to a wedding where bizarelly most of my symptoms dissapeared completely for two days. They returned on the Monday but hey, it's progress.

Once again I am so happy for you. I think feeling you are in safe confident hands with the right doctor is half the battle, I know it was for me. I hope even though it isn't inner ear you'll continue to come to the boards. They should call it a dizzy board really as we all have or have had that in common.

It makes me wonder if anyone else on the board has the same thing as you. I've noticed a few people lately who talk about getting their symptoms after large doses of drugs, particularly during childbirth. Really makes you wonder.

best,

Wow, just read your post re the appointment. Amazing to see a great doc who really knows his stuff and finally get a definitive diagnosis. I know how comforting that is - to just know for sure what is going on makes it all so much easier to cope with. I am so happy you've been given peace of mind and also that it's good news - you are on the road to recovery and will feel well again.

Thank you for the kind words!!!

I hope you are doing even better this week. I have faith that you will continue to improve again and get back to where you were.

this is definitely migraine - the light sensitivity 24/7 is a big give away with me
This, I guess explains why I was never bothered by the light like you. I'm glad you have been able to get out a bit more. I think it is really important to not only your physical health but mental health.


It makes me wonder if anyone else on the board has the same thing as you. I've noticed a few people lately who talk about getting their symptoms after large doses of drugs, particularly during childbirth. Really makes you wonder.

I thought about this numerous times. I do think in some cases it is migraine from the hormonal changes; however, I do wonder about the epidurals these women had. I've heard of it causing spinal headache and paralysis if inserted incorrectly.

Once again I am so happy for you. I think feeling you are in safe confident hands with the right doctor is half the battle, I know it was for me. I hope even though it isn't inner ear you'll continue to come to the boards. They should call it a dizzy board really as we all have or have had that in common.
You are so right...I felt a sudden relief after leaving his office last week. I will definitely continue chatting on the boards. I have met so many nice people hear and some have been better friends than my friends at home prior to all this. It is much easier to talk to someone who understands me and how I feel. If it wasn't for this board I would have lost it long ago and don't think I would be a wise on the subject.

Take care and keep me posted on how you are doing.....I'm wishing you the best of luck with the increase in meds. Keep in mind, you are seeing improvement so it is working just not at the speed we all wish for.

Gloria

Hi Gloria,

Really glad to see that you have found a doc who seems to know his stuff and has, more importantly, made you feel better about it all. I'm just curious how he ruled out migraine as the problem given the beneficial changes you saw when you followed the migraine diet? Did you feel he had a grasp on the many different aspects of migraine? Are there any definitive diagnostic tests to support his diagnosis? I've never heard of seven johnson syndrome...need to find more info on it.

I'm waiting for that migraine diet book to arrive this week actually. I'm going to really give it a go and see just how much food plays a part in all of this for me.

Cheers...Scott :cool:

Gloria- I accept your challenge, the squash court awaits.

Hi Gloria,

Really glad to see that you have found a doc who seems to know his stuff and has, more importantly, made you feel better about it all. I'm just curious how he ruled out migraine as the problem given the beneficial changes you saw when you followed the migraine diet? Did you feel he had a grasp on the many different aspects of migraine? Are there any definitive diagnostic tests to support his diagnosis? I've never heard of seven johnson syndrome...need to find more info on it.

I'm waiting for that migraine diet book to arrive this week actually. I'm going to really give it a go and see just how much food plays a part in all of this for me.

Cheers...Scott
Reply With Quote

Hi Scott,

A lot of factors went into my diagnosis. One being all my test results over the last couple of years (took everything to his office). Discussing my daily symtoms in detail (weird things like brain sensation like the buzzing and really weird sick feelings in my head). The fact that my symptoms came on within that 6 - 8 week time frame after the trauma that I incurred from the antibiotic and how the symptoms came on and progressed. Pressure - pain.....then came the vision problems....then the dizziness....then the tinnitus; all over a 3 month process following the injury. The steven johnson syndrome itself. No prior migraine or headache history. His experience with post-traumatic headache symptoms of his patients versus his migraine patients. The fact that mine never have fluctuated up and down; it has just been a slow continual improvement over time similar to trauma patients. The symptoms I had on the klonopin and then coming off it.

The diagnostic tests are pretty much what I had plus some neurological tests he did with me and taking a look at the neurological symptoms I've experienced.

The migraine diet triggers that helped me were the ones that are direct nervous system triggers like caffeine, chocolate, alcohol, food additives like msg, etc. The other triggers like cheese, fresh baked goods, nuts, etc. won't effect me. Yep, I questioned this too and tested it out over the last week. I had nuts, peanut butter, pizza, cheese etc. one of the triggers EVERY day(not that I need those extra fats) but no change. My head feels the same but less stressed. I managed to prime, paint and sponge texture my bathroom this week with no big problems other than the ringing off the hook in my ears. I think the benefits I have seen coincide more with coming off that nasty klonopin which he said was only worsening my symptoms because of the damage to my CNS. I've also been noticing less dizziness/off feeling inside stores as I get away from that klonopin.

There are so many little things that are clicking into place with this whole diagnosis that I feel confident he is 100% correct. Nothing ever said by any doctors made sense until I saw him. Even his prognosis of 2 - 5 years seems to be fitting my recovery history.

I really think that book is a must read for everyone suffering our symptoms for an extended period of time. It covers so much with this junk.

Incidentally, this doctor started the headache institute at one of Pittsburgh's biggest medical centers and is now doing it for UPMC (Unv. of Pittsburgh Medical Cntr.). He educates GP's about migraine all over the PA area. He's the one I forwarded you the article on.

Take care,
Gloria

PS. - I feel better and better as this klonopoision leaves my system. I noticed my headaches and pressure easing some since Sept coinciding with me coming off the klonopin and as time goes on, they continue to improve my daily head pain and pressure. I believe I will beat this....tinnitus freaks me out a bit still though.

JB.....of course there will be NO money involved in this ;)