Need some input

Hi Gang,

As some of you may know, I’ve been on a holiday in Canada now for about 12 days. The only thing I have been taking to control migraine and this vertigo garbage is St John’s Wort. Here’s what I’ve found:

As long as my life is VERY routine and I don’t go too crazy with either excitement or anxiety, avoid tons of potential trigger foods (way too many for my liking), then I can get by and mostly manage this. However, throw in a trip overseas and the sh*t really hits the fan. The first 3 days were OK but then I was running around with an ex girlfriend and the next day everything caught up with me – lack of sleep while travelling, jet lag, excitement, new everything – and BAM. When I was here last October on an SSRI, I had some symptoms but it never came unstuck quite like this.

But here’s what’s weird and I wonder if some of you guys also get this. While I’ve had nasty head and neck pain, I have been hit with what feels like chronic fatigue. It’s like glandular fever without the fever. I’m totally knackered all the time beyond belief and have a heavy sick feeling in my body. Sometimes it gets so strong I feel nauseous and just ache all over. When I lie down to sleep the vertigo starts. Awful. I look terrible too … eyes are heavy etc. Physical activity definitely makes everything 10x worse when I’m like this.

Is this part of the migraine scene? I get these flu-like episodes once every few months and always after sudden physical exertion not to mention more dizziness and anxiety too. Sleep is all screwed up on top of it all.

The last thing I wanted to bring up is a migraine prevention program a friend of mine found on the web here:

migraineprogram.com/

He also has had an intractable case of vestibular migraine, has been through every drug under the sun for 4 years and has seen near zero improvement unil starting this program. The latest I heard was that he feels excellent and dizzy free for the first time in 4 years. He’s also on 37.5 mg of Effexor although he didn’t see much change on it after 7 weeks. This program was what did the job. I think I’m going to do it. I spoke to a guy at the centre in Seattle last week about it all. They want 2 grand to start it. Smells like it could be a scam but then I’m hearing good things about it so think I’ll risk it. I’d pay millions (if I had it) to be rid of this.

Scott 8)

Hi Scotty,
I’ve sent a copy of this attachment to Terri Roberts (migraine expert) who also works with a hand full of migraine specialists, that might have some Ideas on this clinic and DR in question,
I’ve asked her for her opinion on it and if she has heard of any promising reports on this Dr or clinic.
Hopefully she’ll get back to us.

It does seem freezable to me,that if this program is based on vitamins and minerals ect…nutrition and hormones ect… that it’s a good place to start for most migraneurs as many of our clever mav’rs have stated over time, that Diet plays a huge role in our disease doesn’t it?
And some people on this forum have had a lot of help by doing the migraine diet.
I wish I had of known of the migraine diet’s successes before starting my medigo round.

Good to hear your safe and ok back from Canada!

Sounds like your not too worse for the wear.

And yes I used to feel a lot of this overwhelming tiredness and flue type aching you talk of all the time, to the extreme, I felt like I was 100 years old.
sorry your feeling this way scott

jen
:frowning:

Hi Jen,

Thanks for your reply and I’ll look forward to any reports you get on that program. It does make sense that playing around with hormones could sort this mess out when you consider how migraine is 1) more prevalent in women and 2) is always bad during the menstrual cycle. Not sure what my excuse is though! :lol:

Anyway, I’ve really had it with all of this head and neck pain. It just won’t stop dammit. I have a big reunion on tomorrow too. I’ve noticed too that the IBS is going off again too. This whole thing is just creates the worst bunch of symptoms.

Scott 8)

Hi Scott,
I wrote a short note to teri roberts pertaining to this website, and attached the site,

Teri Did get back to me with this,

Jenny,
I did remove the link. Don’t want to give that site any traffic. This is a doctor who says he can “CURE” Migraines. Need I say more? Also, there is no physical address or mailing address on the site. I steer away from such sites. I couldn’t even find an email address to contact anyone. These are never good signs.

One of the doctors on that site wrote a book too. It’s garbage. I’d really steer clear.

Teri

Thanks Scott, this dosnt mean, someone who wants to try it shouldnt.
oh and Scott, my neuro said the IBS is directly related to the migraine,
while the migraine is happening so will the IBS in some patients, my IBS symptoms was only ever helped by antidepressants or stopping the migs.

all the best
Jen.

Hi Scott,

Yes, I did the post of Fatigue and Achiness. If I go out shopping and get tired, I ache all over, feels like the day before you get the flu. Virusy, achy limbs, heavy feeling, sometimes even pricky throat, sweating, just want to sleep. This happens also if I have done too much over a period of days so it isnt always easy to recognize as to what caused it.

Also get so tired my heartrate goes up, like my body is struggling to keep going. The drs. finally diagnosed me with chronic fatigue syndrome on top of the dizzy migraine but I am beginning to think it is one and the same. I had a friend diagnosed with both and with the right treatment for migraine, she can walk miles, no problem.

I am taking my first holiday for years in a weeks time in Spain, dreading the flight because of the ear thing, but if I wait to get better I may never go!

Best Wishes
Christine

Hi Scott,
sorry a little off subject I know.

but I was just thinking It would be a great Idea, if this forum could put a permanent site link to the My migraine connection site if allowed, so the people searching here could have the most up to date informative information at their fingertips on migraine prevention ect…

Teri Roberts and friends are the people in the know
when it comes to migraine new developements and treatment options.
just food for thought , what do you think Scott?

here is the site link
healthcentral.com/migraine/

jen. :mrgreen:

Hi Scott

Exhaustion is my most debilitating symptom. I have felt like I am 100 years old and have dragged myself through life for the last ten months (I’m only 29). I just to wonder if something else as causing the fatigue and my GP once suggested I had ME but now I believe it has the same underlying cause as the dizziness, headaches and nausea as they all started at exactly the same time on the same day. I don’t believe in that strong a coincidence that two illnesses started at the same time!

Becky

Becky whats ME

Sorry Jen

ME is another name for Chronic Fatigue Syndrome (CFS).

Becky

Oh ok Becky thanks.

Hey All,

Thanks for all the input re the fatigue. So it’s obviously another part of this migraine disease. Great.

Just off the phone with a friend here in Toronto who suffers from chronic migraine and only occasional attacks of vertigo. She just saw a top speciialist here in Toronto who said this:

“I really don’t think your vertigo attacks have any connection with your chronic migraine condition.”

What a complete moron. I simply cannot believe there are specialists out there who still don’t get this.

Jenny – really appreciate you getting back to me re the program. I may still do it though even though it looks risky as hell. The only reason is because of Roberto’s success since being on the program. Of course it could all be Effexor couldn’t it? It’s a 2 thousand dollar gamble really.

I’m having a chilled day today. It’s been non-stop here for days on end and this head has been going crazy as a result. Migraine does not like activity. Got to wind this down before the flight home and MORE fallout in Sydney.

Scott :roll:

Hi

Could you let me/us know how you get on with this program?

Thanks, Becky

Hi Scott -

My name is Molly and I don’t think I’ve ever posted a reply to you as I have only known about this site for a little over a month. But I did click on the site that you referenced in you initial post, and got a call from Micheal in Seatlle not long after. I spoke with him today and was intrigued, which is of course his job - to intrigue you. But the idea that its about hormones and their being in balance makes some sense to me. I’ve been aware that my cycle and most women’s trigger migraines. My mom told me the other day that 1 out of 5 women has migraines which sounds hormonal to me. I did have my testosterone tested recently and it was way low and I’m about to start using cream on my wrists to increase my levels. Anyway, just that simple test makes me know that my levels are off. He said that the hormones are all natural.

Have you heard more from your friend? I DO NOT have the money for this as I have spent THOUSANDS just this year trying to figure this out. But he said that people who are non compliant have an 85% success rate and those who are, are up around 95% . Now he told me that they have a clinic in Ohio and that people drive there from all over. I believe there is a clinic in Seatlle as well. The Dr. that started this is named Dr. Dzugan and the Dr in Ohio is Dr. Rozakis. I’m going to read about both of them.

Micheal claimed to be a former migraine suffer and his wife as well. How knows? He also supplied me with a list of references that I of am of course dubious because you have no idea if they are real or not. And i don’t want to get suckered into a scam. I would pay to get well, but *hit, I don’t want to be the fool to fall for a scam.

Again, I’d love to know about your friend’s experience.

Take care -

Molly

Okay -

I just talked to an amazing woman who was a reference - she searched for 20 years to fix her debilitating migraines, and yes, this did it. She invited me (I asked if I could she this and she said yes) to visit www.colleencoble.com to see her story. I asked if she got money for doing this and she said "Absolutely not. After I suffered to the degree I did, I want to share this information with everyone. She is 56 and was incredibly friendly and wonderful. She had been on EVERYTHING drug wise and had tried everything - acupuncture, nutrition, cranial sacral, etc.

She also said to google “Bioidentical hormones” in your area to find a clinic, usually it’s a women’s clinic, to find practitioners who work with hormone balancing. That way insurance can pay for part of it. That made me know she wasn’t profiting from this. Why would she tell me to go somewhere else for help?

Anyway, she was great and if made me feel hopeful. She has been healed for over a year now!

Anyway, I thought this was encouraging.

Molly

Hi Molly,

Thanks for your posts on this. Very encouraging. I’ve known the guy doing this program for over a year and he’s just one of us trying to get well again. He’s been on this forum but I will let him tell the story when he is ready. I can say this though – his MAV has been one of the most intractable cases I’ve ever heard of. He’d NEVER had a single dizzy-free normal day in 4 years. And now he has no dizziness and in his exact words said he feels “EXCELLENT” in upper case.

I’m going to do the program after I read the book first. The only thing that worries me is the use of 5htp and SAMe which are both serotonin enhancers. The last time I used 5 htp I felt bad. I just don’t want any more serotonin madness in my life. It’s awful when things go pear-shaped. On the other hand, my diet is so boring right now – everything triggers migraines and dizziness now – that I am willing to try anything. To be able to enjoy the odd glass of wine or eat fruit again would be a miracle.

I spoke to the same Michael as well when I was in Toronto. Seemed like a good guy to me.

Best … Scott 8)

Hey Scott -

I also called another reference. I almost cried talking to her because we could finish each other’s sentences. She does not have MAV but was having 20-30 migraines a month. Now after a year of treatment, she gets 4-5 a month. Not perfect, but a HUGE improvement. She said that she would not try and do it locally with anyone else. Why waste more money right? She drove from New Jersey to the clinic in Cleveland to meet the doctor and said he was incredible. She actually talked on the phone to Dr. Dzugan the Russian doctor whose research came up with this approach. Her quote was “there is an angel who walks among us and it is this man.” She just kept saying “I have my life back. I have my life back.” Isn’t htat a beautiful thought. She also went on to say that when your hormones are balanced, there have been links to other improvements such as anxiety (me), ADHD (me), depression, and others. She said that she knew she sounded like a infomercial. She had been on 3 preventative medications at the time she choose to start this program. When she learned about the program she thought, “this is too good to be true.” But she was was dispirit.

I have not felt this encouraged since this whole thing started a year ago. So your friend had 4 years of dizziness? That is good to know that this program seems to work for that too. Neither of these women have MAV. I was hoping that it worked for that too.

Please keep me posted. I am going to do more research but, I have to say that i am close to signing on the dotted line.

Best,

Molly

Hi Molly,

I think it doesn’t matter that these women do not have dizziness with their migraines. If the whole process can be stopped than the dizziness should go with it. Wow, imagine being rid of this garbage? The only thing that worries me is the use of testosterone. For me that could mean hair loss. I had a small purge occur 10 years ago and nothing since. I’d hate to wake that up again!

Here’s a more direct link to the other lady’s story you mentioned before:

colleencoble.com/migraine.php

Best … Scott

Did you ask Micheal if he’d lost his hair?

I just emailed him all about this - and also how they manage to muck around with serotonin without the wheels falling off!

I’ll let you know what he has to say.

Best … Scott

What is your fear of seratonin? Is it just that you have had bad experiences with SSRIs?