Anyone else like me out there?

"one thing I have noticed with my migraines is they always start with sinus congestion, stuffed nose, facial pain, if I can take a decongestant and it works I can sometimes avoid the migraine. But often the sinus turns into a throbbing pain on my right side of my head."

Jeannie, one of the reason that many of us have the symptoms that you describe at the start of migraine, and which is so often misdiagnosed by the ignorant doctors as a sinus congestion, is that migraine is caused by the inflammtory proces which affects circulatory and soft tissues in our heads, and the resulting swelling causes pressure of the nervous systems, leading to a typical M pain.

Sadly, too many people are still sufferingf painful and unnecessary treatments and operations for "sinus" problems, becasue of this lack of basic understanding amongst many doctors about migraine and how it affects the physiology of the brain and the surrounding tissue.

When you suffer from M you need to see a good neurologist who specialises in M treatment, and stay well away from people (like these ear/nose and throat doctors) who try to talk us into any operations of this kind, becasue they never work in terms of any improvement in M.

Yes, it is possible that some people might have some sinus infection going at the same time as suffering from M, but occasional sinus infections are usually treated most effectively by antibiotics. I had suffered from one such bout in the last few years, and it feels quite different to the normal M pain.

If you look into the archives, or previous posts on the subject here, you will see that not many people who have been put through many unnecessary "sinus" operations, got any positive outcomes as far as M is concerned.

Welcome to our forum, Jeannie, it is a good pleace to get information on anything connected to M.
And Dianne is quite right, most people here know more about M that some of the doctors who are supposed to treat us. I hope you stay with us.

Mini UK

This is my first time on this site and actually posting anything to any kind of forum. Just reading some of the posts gave me some comfort because it's so nice to know other people can understand what you're going through. I have had migraines for close to 15 years. Recently they have become out of control and unmanageable going on for weeks at a time. I've been on so many different medications, including Topamax and currently Propananol in an effort to prevent them. I receive acupuncture weekly and am followed by a great Neurologist. I have missed so much work, so not only have these migraines taken a toll on me physically, but also financially. It has gotten to the point that I was willing to try anything and just recently received my first Botox injections. I think the hardest piece of all this is the emotional toll it's taken. I feel so frustrated and scared that this will never get better. I am only 34 and my life is being taken over by this condition. I am a psychotherapist and I'm now returning back to therapy myself because I am simply worn down from constantly being sick and having my life be affected by these migraines. I'm losing faith. Any feedback or suggestions would be greatly appreciated. Thanks.
Jennifer

I totally hear you..I was written up more times at my various jobs than I can count for missing work due to a migraine. Nobody but the sufferers of them understand what it feels like. Often I have felt like giving up, from the countless "remedies" I have tried to the adverse side effects of the drugs. I am unable to work anymore and thankfully have an inheritance where I am finanacially ok. I would say to keep trying various treatments and don;'t give up. Acupuncture seems to lessen their severity for me. Does Imitrex help you at all?
I am going to a Headache Clinic this Friday, they specialize in nothing but migraines...perhaps they can help...do you have such a clinic near you at all? I hope things can turn around for the better for you soon

When I started this thread I had no idea that I'd get so many hits and start so much discussion. I am glad that people are communicating about this M word we all share. I have been having a rough patch of my own which is which I haven't posted in so long. August made my head go haywire and I'm finally back at a point where I can stand to be on a computer for a while.

I had my spinal tap on the 27th and got back some really weird results. Which confused even my neurologist and led him to have me get another MRI of my brain and a current full spinal scan. I get the results on Wednesday. I've also changed my preventative from Topamax to Zonisimide. I'm waiting to see if it helps any, but changing it over has been rough. Has anyone tried Zonisimide?

I had a few acupuncture appointments in August and was hoping it would help, but my M's got so bad I couldn't leave my apartment and couldn't drive. I wasn't able to stay with it long enough to see any improvement, but I did before after spinal surgery.

Right now I just seem to be collecting more questions than answers. Did anyone else get weird results with their spinal taps? Half my results were normal and a few were weird. I'll share what I learn when I know more.

Lavenderfire

Lavender,

I ended up with severe Rhinitis from Zonisamide. I was allergic to everything- pillows, comforters, scents, my husband.... It was bizarre! But then I seem to have a long history of bizarre side effects. Unlikely you will get that one, but something to watch out for. It took me several months to figure it out.

So it's been awhile and the doctors still can't figure out what's causing my constant migraines. It's been seven months and I guess I was starting to get hopeful that there was something more than just crazy daily migraines to blame. Now I don't know.

There is still the weird lab results, but the additional testing hasn't given any new information. The steroids I was given have actually made things worse so they are weaning me off of them. I wanted to ask here if anyone has gotten worse with steroids? I know a lot of migraine sufferers get relief, but I've tried twice now and it hasn't worked for me. Anyone else?

Thanks,

Lavenderfire