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I did the doppler testing, and as part of it I was asked to hold my breath and push a few times. I usually have a headache, but this made my headache so much worse. I wondered if anyone else had the same experience.

I just had Dop. US this aft., and had to do the Valsalva a few times. I have a headache now, that I did not have earlier. Good observation.

I get headaches all the time too, sometimes coughing will do it, exercise, bending over, etc. I've not really ever paid attention to the triggers. I will now.

I got one later in the day, but while the doppler was being performed my neck did feel very uncomfortable. I could feel it throbbing when I was laying flat. I never ever lay down flat, I'm always at a bit of an incline. I did feel considerably worse after the scan though.

Anything that involves positional changes makes me feel kinda sick. I usually don't pay attention, but I was focused on myself for once! Salvatore, I'm like you, I don't lie flat. When I had to sit up I was very dizzy and my heart raced.

Johnson (as you like to be called) I always get a headache from bending over. That's why years ago I called a moratorium on sweeping, the dishwasher, etc.

Kinda like a permanent hangover. But without the fun night out.

I am going in for my first ultrasound on Monday. Is there a special protocol that I should make the technician aware of specific for CCSVI testing? I know from reading that the diagnosis can be tricky.

WeWillBeatMS

Hi there. There is a specific protocol for the ultrasound. Where are you going? Did you end up at Mayo?

Hey bluesky,

I wish I was going to the Mayo clinic up in Jacksonville but I never got one response from any of the doctors that I sent my letters to. In a wierd twist of events, I have changed neurologists just two weeks ago because my neurologist down at the University of Miami is retiring and my new guy is going to be starting me back on Tysabri because I just continue to feel horrible. But while at his office for the first time I was discussing CCSVI and he said that he had heard about it and he was actually open to it. He even said that he could do the ultrasound testing to see if my jugular and azygos veins are OK right in his office as evidentally he has a technician that comes in twice a week to check out people's veins. I said "Great!" I just got off the phone with the secretary and she said that the technician will be in on Monday so I'm going in at 9:00am for the ultrasound. Plus, as if that's not enough to make my day, he actually wrote me a prescription for to do a MRA/MRV.

WeWillBeatMS

bluesky63 wrote:Anything that involves positional changes makes me feel kinda sick. I usually don't pay attention, but I was focused on myself for once! Salvatore, I'm like you, I don't lie flat. When I had to sit up I was very dizzy and my heart raced.

Johnson (as you like to be called) I always get a headache from bending over. That's why years ago I called a moratorium on sweeping, the dishwasher, etc. :-)

Kinda like a permanent hangover. But without the fun night out.

That is funny. I have told people, who ask me what I feel like, that is is like 3 days and nights of boozing with no sleep, and what you might feel like on the fourth morning - without the drinking and fun.

WeWillBeatMS

the Ultrasound should be a transcranial doppler -- be sure to ask your doctor.

Sharon wrote:WeWillBeatMS

the Ultrasound should be a transcranial doppler -- be sure to ask your doctor.

Not necessarily.
Our dr. in Melbourne who did the doppler, only did the test on the front of our necks, up to the jaw line. She could see if there were abnormal blood flows from that, but not where the blockages are.

Our IR just needs to know there are abnormalities and they will do the gold standard venogram to show exactly where the blockages are.

For myself, the doppler showed blockages in the RIJV, but the venogram found stenoses in both IJVs.

Hope that helps.

Thanks Sharon and Downunder. My neurologist's business card actually says "Transcranial Doppler Carotid Duplex" right on it so hopefully his technician will know how to run the test to check for stenosis. It's so great to have a neurologist that is at least open to new ideas about MS. He also prescribed a MRV/MRA which I need to schedule to have done. Progress is a good thing.

WeWillBeatMS

By the way Downunder, I have yet to get the IR that I consulted with one time on board to move ahead with the venogram. Maybe if the doppler and/or MRV show something he will be more inclined.

WeWillBeatMS

WeWillBeatMS wrote:By the way Downunder, I have yet to get the IR that I consulted with one time on board to move ahead with the venogram. Maybe if the doppler and/or MRV show something he will be more inclined.

WeWillBeatMS

Yes, I tried to get an IR to look at me first as I figured he'd know how to read the tests, whilst others in Australia did their doppler first, then got an IR on board. Eventually I gave up my way and joined the others. Fortunately I ended up being the 5th treated in Oz.

Good luck

I just had the ultrasound this morning and the tech said everything seemed fine unfortunately. Next will be the MRV/MRA hopefully in a week or so. I do not have a headache although I am surprised because I get bad headaches so easily and often. The tech was pushing pretty hard on the right side of my head which is where my head hurts the most normally.

WeWillBeatMS

Hi there. I would check to see if the technician was using the specific protocol to assess for CCSVI. There aren't very many people trained to do it, and when I had the doppler done, the technician said that she could understand how the stenosis would be missed on a regular doppler if you hadn't had specific training. Worth checking back!

I think what gave me the headache was a combination of being asked to do the valsalva over and over and having to switch position a few times. Even just going from lying flat to sitting straight up made me dizzy and nauseated and made my heart race.

Downunder, congratulations on your treatment!