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I have been recently diagnosed the POTS. I am feeling better most days with medication
Midodrine, Mestinon, Florinef, LDN. What you say about CCSVI causing POTS makes so much sense to me.
Since my illness began, July 2, 2011, I began having daily migraines along with the other symptoms of POTS, the overwhelming fatigue being the most troubling. But I also hear and feel a loud swooshing sound as the blood goes through my neck. Very disturbing sound/sensation.
I have not been diagnosed with anything else at this time as there are no specialists in our area. I did my own poor man test to see if I have MCAS. I took Z/Z for two days and they nearly landed me back in bed! It is safe to say that didn’t work for me!
Without disposable cash on hand, but with good insurance, what is the best way for me to get tested for CCSVI?
We live in Central Illinois.I have been recently diagnosed the POTS. I am feeling better most days with medication
Midodrine, Mestinon, Florinef, LDN. What you say about CCSVI causing POTS makes so much sense to me.
Since my illness began, July 2, 2011, I began having daily migraines along with the other symptoms of POTS, the overwhelming fatigue being the most troubling. But I also hear and feel a loud swooshing sound as the blood goes through my neck. Very disturbing sound/sensation.
Without disposable cash on hand, but with good insurance, what is the best way for me to get tested for CCSVI?Hi, With migraines and fatigue, I wonder if you have external communicating hydrocephalus? Does the base of your head, radiating down your neck hurt? Any nausea, dizziness, sensitivity to noise/light, ear aches, tremors — all worse with straining (valsalva)? That would indicate a need for Diamox. I’ve never heard of a patient HEAR their CCSVI before, but plenty of folks hear the increased pressure if it affects their ears. Hmmm. PLEASE be sure your doctor checks that out, just to be sure it isn’t related to your carotid artery, or cavernous sinus, OK? To be checked for CCSVI (although I wouldn’t recommend TREATING the CCSVI, especially if your cytokines are not yet under control) you can have an fMRI (likely the most reliable test — just google fMRI CCSVI locations), but an MRV will usually also show it (but the radiologist won’t be able to tell you — the images must be read by someone familiar with CCSVI), and in an experienced hand, a sonogram can usually pick it up — especially if there is blood flow BACKWARDS in the vein. When I went to be evaluated, I knew I wanted Dr. Haacke to read my images, so I googled him and the Hubbard Foundation to get started. Then I SPOKE to the interventional radiologists and researched the centers to find out who had the most experience, etc. Yup, nothing replaces a little bit of homework! Let us know, OK? 🙂 Diana
Thank you Dr. Diana! I do have most of the symptoms you mentioned; nausea, dizziness, sensitivity to noise/light, sometimes I get ear aches, but I know how to massage my neck to release the muscles. No tremors, but there are times when I’m very clumsy and my balance is off. I did have a a sono of my carotid artery. We weren’t looking for CCSVI at the time. I did purchase a cervical collar and I’ll be trying it out tonight. 🙂 Next step will be to talk to the doctor about trying Diamox, thank you for the information and things to look for!
Blessings to you and your family!I recently stumbled upon and wondered about the Hubbard Foundation. My family is from San Diego (where Hubbard is based) so it stuck out when I saw that they diagnosed ccsvi. I noticed there is a ccsvi conference in san diego being put on by the Hubbard Foundation. Dr. D, is that were you ultimately had your imaging done and read?
I have been recently diagnosed the POTS. I am feeling better most days with medication
Midodrine, Mestinon, Florinef, LDN. What you say about CCSVI causing POTS makes so much sense to me.
Since my illness began, July 2, 2011, I began having daily migraines along with the other symptoms of POTS, the overwhelming fatigue being the most troubling. But I also hear and feel a loud swooshing sound as the blood goes through my neck. Very disturbing sound/sensation.
Without disposable cash on hand, but with good insurance, what is the best way for me to get tested for CCSVI?Hi, With migraines and fatigue, I wonder if you have external communicating hydrocephalus? Does the base of your head, radiating down your neck hurt? Any nausea, dizziness, sensitivity to noise/light, ear aches, tremors — all worse with straining (valsalva)? That would indicate a need for Diamox. I’ve never heard of a patient HEAR their CCSVI before, but plenty of folks hear the increased pressure if it affects their ears. Hmmm. PLEASE be sure your doctor checks that out, just to be sure it isn’t related to your carotid artery, or cavernous sinus, OK? To be checked for CCSVI (although I wouldn’t recommend TREATING the CCSVI, especially if your cytokines are not yet under control) you can have an fMRI (likely the most reliable test — just google fMRI CCSVI locations), but an MRV will usually also show it (but the radiologist won’t be able to tell you — the images must be read by someone familiar with CCSVI), and in an experienced hand, a sonogram can usually pick it up — especially if there is blood flow BACKWARDS in the vein. When I went to be evaluated, I knew I wanted Dr. Haacke to read my images, so I googled him and the Hubbard Foundation to get started. Then I SPOKE to the interventional radiologists and researched the centers to find out who had the most experience, etc. Yup, nothing replaces a little bit of homework! Let us know, OK? 🙂 Diana
Just wanted to put out there that Arizona Doppler Specialist does excellent Doppler Sonograms using the Zamboni Protocol, to DX CCSVI, and it is less expensive than the Haake Protocol. Certainly not as thorough, but if you want a basic DX, this is an option.
I had my CCSVI DX by Eric Feigenbutz. To DX CCSVI takes special ultrasound training… you can’t just get it done at your local hospital, sadly.
Also, Arizona Doppler does go to other locations to do US’s… that is how I had mine done, in Seattle in Jan 2011 during an MS mini conference of sorts. So you can always check with them to see if they are going to be in any other locations.
Thank you Dr. Diana! I do have most of the symptoms you mentioned; nausea, dizziness, sensitivity to noise/light, sometimes I get ear aches, but I know how to massage my neck to release the muscles. No tremors, but there are times when I’m very clumsy and my balance is off. I did have a a sono of my carotid artery. We weren’t looking for CCSVI at the time. I did purchase a cervical collar and I’ll be trying it out tonight. 🙂 Next step will be to talk to the doctor about trying Diamox, thank you for the information and things to look for!
Blessings to you and your family!Perfect!! PLEASE keep us posted! I betcha’ Diamox will rock your world. 🙂 Remember, it is just a first step, though, OK? It’s an important step, though! 🙂 Diana
Well, the cervical collar didn’t work for me. I already use a thin pillow that I fold under my neck for support. The cervical collar, even though it was fairly loose felt like it was cutting off the blood supply in my neck. It made it pound all the harder. I also watched your video about external communicating hydrocephalus and realized the I get worse on the days I take Florinef. I’ll be talking to my PCP about Diamox soon. My husband is downloading Part 2 as we speak. I’ll keep you posted!
I’m so glad I found you. Thank you for sharing your insight!Well, the cervical collar didn’t work for me. I already use a thin pillow that I fold under my neck for support. The cervical collar, even though it was fairly loose felt like it was cutting off the blood supply in my neck. It made it pound all the harder. I also watched your video about external communicating hydrocephalus and realized the I get worse on the days I take Florinef. I’ll be talking to my PCP about Diamox soon. My husband is downloading Part 2 as we speak. I’ll keep you posted!
I’m so glad I found you. Thank you for sharing your insight!Well, the cervical collar didn’t work for me. I already use a thin pillow that I fold under my neck for support. The cervical collar, even though it was fairly loose felt like it was cutting off the blood supply in my neck. It made it pound all the harder. I also watched your video about external communicating hydrocephalus and realized the I get worse on the days I take Florinef. I’ll be talking to my PCP about Diamox soon. My husband is downloading Part 2 as we speak. I’ll keep you posted!
I’m so glad I found you. Thank you for sharing your insight!You’re so welcome! 🙂
Thank you Dr. Diana! I do have most of the symptoms you mentioned; nausea, dizziness, sensitivity to noise/light, sometimes I get ear aches, but I know how to massage my neck to release the muscles. No tremors, but there are times when I’m very clumsy and my balance is off. I did have a a sono of my carotid artery. We weren’t looking for CCSVI at the time. I did purchase a cervical collar and I’ll be trying it out tonight. 🙂 Next step will be to talk to the doctor about trying Diamox, thank you for the information and things to look for!
Blessings to you and your family!Here’s the trick, Hon. They need to look at your VEINS, not the arteries!! Fingers crossed for you and Diamox! 🙂
Just wanted to put out there that Arizona Doppler Specialist does excellent Doppler Sonograms using the Zamboni Protocol, to DX CCSVI, and it is less expensive than the Haake Protocol. Certainly not as thorough, but if you want a basic DX, this is an option.
I had my CCSVI DX by Eric Feigenbutz. To DX CCSVI takes special ultrasound training… you can’t just get it done at your local hospital, sadly.
Also, Arizona Doppler does go to other locations to do US’s… that is how I had mine done, in Seattle in Jan 2011 during an MS mini conference of sorts. So you can always check with them to see if they are going to be in any other locations.
Thanks, my friend. I need to do a video on this — I think it is soooo important for us to be checked for CCSVI (including venous stenosis of head and neck), BUT I’m not advocating TREATING it with angioplasty. We are gathering info now… If you get checked and can send copies of your images, that would be WAY COOL. We don’t know the long-term effects of angioplasty on our delicate veins, and from what I’ve learned so far, I think the problem for us is the PRESSURE that the enlarged IJV’s put on our vagus nerve (not often relieved with angioplasty). Also, stenosis of other veins can contribute to our hydrocephalus. So, Diamox is important, and I’m consulting with, and researching other ways to help our vagus nerve, or at a minimum, help provide some vagus “function” through medication. What a journey we are on! 🙂 Diana
Well, I’ve been on Diamox for a while now and it’s amazing the difference with my headaches. I had my CO2 checked at about 3-4 weeks with good results. I also purchased some PH strips and capsules for baking soda. My dosage for Diamox is leveled out now. 1/2 in the morning, 1/2 at noon, 1/2 at 4:00 and a whole tablet at bedtime. If I struggle with a headache, I check my PH and usually find it’s acidic. A couple of baking soda capsules take care of it! We haven’t gotten to the point of testing for CCSVI yet. It would mean traveling quite a distance for us.
I could have an fMRI done here, but the sono techs here probably know nothing about CCSVI. Though the Diamox helps with my headaches, I still struggle with the other symptoms of dysautonomia. The fatigue and pre syncope symptoms are the worst and I feel it’s made even worse by the electromagnetic field at work. I’m better when I can work from home. I really feel for everyone who has been struggling with this for years! I’ve only been at it for 1 year and I’m so exhausted trying to get through each day!I’m also getting treatment for TMJ disorder. Hoping that will help too. The night guard my dentist made for me had my jaw locked up, so I’m hoping that fixing my jaw will also help with the headaches.
Well, I’ve been on Diamox for a while now and it’s amazing the difference with my headaches. I had my CO2 checked at about 3-4 weeks with good results. I also purchased some PH strips and capsules for baking soda. My dosage for Diamox is leveled out now. 1/2 in the morning, 1/2 at noon, 1/2 at 4:00 and a whole tablet at bedtime. If I struggle with a headache, I check my PH and usually find it’s acidic. A couple of baking soda capsules take care of it! We haven’t gotten to the point of testing for CCSVI yet. It would mean traveling quite a distance for us.
I could have an fMRI done here, but the sono techs here probably know nothing about CCSVI. Though the Diamox helps with my headaches, I still struggle with the other symptoms of dysautonomia. The fatigue and pre syncope symptoms are the worst and I feel it’s made even worse by the electromagnetic field at work. I’m better when I can work from home. I really feel for everyone who has been struggling with this for years! I’ve only been at it for 1 year and I’m so exhausted trying to get through each day!I’m also getting treatment for TMJ disorder. Hoping that will help too. The night guard my dentist made for me had my jaw locked up, so I’m hoping that fixing my jaw will also help with the headaches.
Great news, Kenzie!! Did you try Zyrtec (most of us take a double dose) and a little bit of Zantac? If you are like us, OMG will that help with POTS. There is a point that I need to make (rather strongly), and am revising my book to reflect this point. HEADS UP! Although CCSVI (and other venous stenoses) are very common with us, and the likely culprit for the fallout of numerous symptoms, I am NOT recommending having angioplasty at this point. My research is showing me that our vessels tend to be “sticky” and develop fibrosis. They are, basically, very inflamed. Adding FURTHER endothelial injury via angioplasty may help (especially short term), but for many of us, I believe it sets us up for thrombosis down the line. I’ll release my research on this soon. I’m now researching ways to prevent/control this problem. Meanwhile, do we have CCSVI? Yes. Should we treat it? Maybe not… OH –TMJ; mouthpiece! YES! That will help control your intracranial pressure at night time. Great job with your pH, BTW! Big hug, Diana
Oh my, Thank you for the good info. I’m hoping for that we find a way to treat CCSVI without angioplasty. We sure don’t need more problems on top of what we already deal with on a daily basis. Because some people do come out of it and have no symptoms at all, it seems dangerous to do the angioplasty! I’m waiting to see that symptom list you’ve made. 🙂 I did try Z/Z for only a couple of days. It totally wiped me out! I was not able function at all. It literally put me in bed. Perhaps I could try a child size dose to see if that would work. Even though my headaches are much better, by the end of a work day, I literally can barely hold my head up and run right to bed and fall asleep immediately. After a 20-30 minute nap, I can breathe easier and go for a while again. (I do this at lunch time too.) I have found that I can’t lift my arms up above my head or even out in front of me like when folding clothes. It really puts a kink in my neck and shoulders and gives me a headache again. Luckily I have a wonderful husband who helps out a lot at home! He’s even so kind as to work out the kinks for me. Thanks for listening and thanks for the hugs! Hugs and love to you as well. 🙂
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