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Hello to all,
I have been watching all the videos and following the forums. Interesting stuff. I have been battling with a plethora of symptoms for 12 years. I went from running the ironman to beeing just barely able to work. Very inetrested in what I have read and watched. I have been a flight nurse and advanced parcatice nurse for 23+ years and have spent huge amounts of time researching in our health systems libraries on diagnosis and topics trying to put it all togerther. I was diagnosed with sero negative mysathenia gravis 12 years ago but never really fit the diagnosis and never really bought into it. Then 2 years ago I was fed up and went to Mayo and was diagnosied with hyperadrenrgic POTS and autonomic neuropathy which actually made sense. Now Interested in the CCSVI part. My sysmptoms- Neuropathy (very bad currently), brain fog, Horrible headaches and occiput/neck pain that sometimes is crushing, Heart rate control was in the 160’s before beta blcokers, BP control problems, Very bad GI symptoms ( chronic diarrhea, abd swelling, pain), frequent voiding, horrible fatigue, joint pain, blurry vision very poor sleep habits and on and on.
I have had a million test over the 12 years with the stand outs being- failed sweat test at Mayo, Failed QSART at Mayo, Failed Tilt Table at Mayo (HR went from 88 to 166 in 30 seconds and diastolic BP went from 84 to 128 in 3 minutes)Increased intercranial pressure (30) during LP, I have had a variety of other positive labs (low ferritin, very high ANA’s, low B6, Low Vit D) Trying to put it all together. I do have an MRV scheduled for 2 weeks. Very intersting to see others with the same and Dr D’s take on the link.
BrentHi Brent,
Yes those symptoms sound so familiar. To get any diagnosis of sorts is a bonus because many sufferers go for years before some caring soul recognises that there is an actual problem. Like you, I thought my ‘post concussion’ diagnosis didn’t quite fit the bill (by a long chalk!) and got stuck into finding out what it really was. Luckily you, like Dr Diana, had the medical background and opportunities for research.I have to say, I stopped taking the beta-blockers after only a month, I had to because they made my limb symptoms much worse. It was like they further restricted my already compromised circulation.
Regarding your symptoms, I have managed to address some of them:
Neuropathy – I had mild radiculopathy and small fibre neuropathy in my right leg, some of which I managed to resolve by using a tiny pedal machine when watching TV, strapping the bad leg in the stirrup and using the other leg to pedal. It took my bad leg around with it and gave it the exercise it needed. Also, I used the bad leg as the lead leg when pushing myself around the house backwards on a swivel chair (barmy! I know, but it got me about and it worked!) several months later it had all much improved.
Brain fog – still working on this
Horrible headaches and occiput/neck pain – this went almost overnight, when I was issued with a Philadelphia neck collar (tried lesser ones but they didn’t work)
Heart rate control was in the 160’s before beta blcokers – I manage mine by avoiding standing (especially standing with head down) basically operating as much as possible in a sitting position, for most everything I do (even sleeping). Any other task that elevated this, I try and delegate.
BP control problems – not easy but again, as you know, it’s down to the autonomic nervous system not responding properly to demands made on it, so best keeping demands to a minimum, do a little, rest a little, I alternate manual and sedentary tasks to try and manage the demand, so that I’m not ‘sat idling’ so to speak but, having suffered this for 12 years, you probably know all this already!
Very bad GI symptoms – I have found the Zantac (Ranitidine) that Dr Diana suggests, helps with these.
Joint pain – still working on this. Glucosamine Sulphate (one of the components of synovial fluid) helped me years ago with a bad back, thinking of going back onto this.
Blurry vision – I noticed that mine was worsened within a short while of eating sweet things (I think it might have something to do with insulin release but I’m not sure). I’m not diabetic or anything.
Very poor sleep habits – this again was MUCH improved with the Philadelphia collar. More recently the use of Cetirizine (as suggested by Dr Diana) improved things even more, I don’t know why but now, not only am I sleeping longer but I’m actually sleeping deeper. I hadn’t had a dream for years but it’s now a regular occurrence. Just need to work on the occasional insomnia that I’ve had for quite some while now (the restless leg thing don’t help!)
You probably know much of this already but I’ve found that even if I glean just one thing that helps my condition, it all adds up to a more comfortable life eventually.
What did they give you to reduce the intracranial pressure ?
Have you had a head and neck MRI by any chance ?
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!Hi Brent.
Welcome to the Forum. I have many of the things you are describing. Have you been tested for EDS? Also, do you mind if I ask approximately what you had to pay at the Mayo Clinic? I would need similar tests to the ones you have had, and I have NO idea what the cost would be. For some reason I always thought it would cost about $25,000 just to go there, which would be well out of my reach.
MJ
Barbara and MJ thanks for the replies. Its actually a small bit comforting to know you are not alone and crazy in this quagmire of symptoms when you hear others who have the same issues. It has been such a rough 6 months since I got pneumonia it just seemed to intensify all my symptoms and I havent recovered yet.
Mj I dont now what it cost at Mayo as my insurance covered all but $5,000 over the 3 visits. They were very good about letting me set up a payment plan to pay that off. I will take some time to pull my records and give you an estimate of the test and charges. I will tell you this. I had heart rate and blood pressure issues for many years and walked around with a heart rate of 140 for what seemed to be years until my primary doc said enough and started me on the beta blacker which did control my heart rate for the most part. That being said the beta blocker seemed to really increase alot of my other sysmptoms. Well the first time i went to Mayo my sweat test and QSART were all positive but my tilt table was negative as my heart rate didnt increase enough (over 30bpm) and I kept saying shouldnt I come off my beta blocker and i was seeing a general neurologist and he said no. Then the last time I went to see the autonomic guys and they stated absolutely you need to be off the beat blocker and off long enough so i wasnt having a beta blocker withdrawel response. So after weeks of being off the beta blocker and having a high heart rate ( and having more energy then I have had in years) I went and had the test and the techs were like ” oh my” as I went from 88 lying to 158 on tilt. Thanks again for you responses.
Brent
That being said the beta blocker seemed to really increase alot of my other sysmptoms. Well the first time i went to Mayo my sweat test and QSART were all positive but my tilt table was negative as my heart rate didnt increase enough (over 30bpm) and I kept saying shouldnt I come off my beta blocker and i was seeing a general neurologist and he said no. Then the last time I went to see the autonomic guys and they stated absolutely you need to be off the beat blocker and off long enough so i wasnt having a beta blocker withdrawel response. So after weeks of being off the beta blocker and having a high heart rate ( and having more energy then I have had in years) I went and had the test and the techs were like ” oh my” as I went from 88 lying to 158 on tilt. Thanks again for you responses.
Brent
Hi New Guy, That is amazing to me that a physician would not realize that you need to be off of the beta-blocker prior to the TTT! Jeez… You probably saw my vids explaining that the beta-blockers will often make the doctors feel better (our heart rates are lower), but they can make us feel worse (for many reasons).
You are not alone in your symptoms and condition,, my friend. Can I encourage you to go to the front page and under “Articles and Handouts” access the symptoms checklist? If you can go through that for me and shoot it back, it would help us all so much. And PLEASE keep your eyes peeled as we will be starting trials soon (and many will be treatment trials — we don’t need to go through three phases of FDA testing like we would with a new drug). Cool? Hang in… 🙂 DianaMj I dont now what it cost at Mayo as my insurance covered all but $5,000 over the 3 visits. They were very good about letting me set up a payment plan to pay that off. I will take some time to pull my records and give you an estimate of the test and charges. Brent
Thank you Brent. I would appreciate you looking up the costs. Hopefully though, I will get into Dr. Diana’s clinical trial and there will be no need for me to spend thousands at the Mayo Clinic.
I too have a crazy high heart rate on standing. It can go as high as the 150’s, but it only has to get to 120 for me to become SOB (short of breath). Funny, I have it all on video (wearing a heart rate monitor) but I can’t even get POTS testing. I was diagnosed by a ND (Naturopathic Doctor) using the poor man’s TTT (BP & HR laying down and then standing).
When I am depressed, coming to the Forum helps me feel better.
Hopefully though, I will get into Dr. Diana’s clinical trial and there will be no need for me to spend thousands at the Mayo Clinic.
I too have a crazy high heart rate on standing. It can go as high as the 150’s, but it only has to get to 120 for me to become SOB (short of breath). Funny, I have it all on video (wearing a heart rate monitor) but I can’t even get POTS testing. I was diagnosed by a ND (Naturopathic Doctor) using the poor man’s TTT (BP & HR laying down and then standing).
When I am depressed, coming to the Forum helps me feel better.
Aww, MJ, thanks for that… Absolutely. Although we all have funky genes and are special in many ways, I have no doubt that our study medications will stop your POTS and dysautonomia. Now, we likely have other issues, but getting rid of that has been a God-send, I must tell you. Were you able to try mast cell meds (Zyrtec, at a minimum)? If that helps, enjoy it! However, I’ve learned that we need more than mast cell treatment. One mast cell doctor I know thought that mast cell meds would do it 100%. Rats, no, but the rest is not expensive, and I can hardly wait to show this!! Meanwhile, I waited 9 months to see a “POTS specialist” who also DID NOT EVEN TEST ME (years ago). I understand your frustration. On the TTT (finally!), my heart rate went from 75 to 164 in 10 minutes. Every year, I went to Mayo to have it rechecked, and it was either identical or worse (BTW, we got “pre-covered” by my insurance company to go to Mayo.) Soooo discouraging. Now, no POTS or dysautonomia. Zero. And it only took me NINE YEARS to figure it out. (ha). I’m soooo glad that coming to the forum helps you to feel better, my friend. That is one reason it is here. Hang in. I’m working with researchers and attorneys to get the studies in place. Yea, attorneys… and you thought doctors were hard to deal with?! Big hug, Diana
Hello to all,
I have been watching all the videos and following the forums. Interesting stuff. I have been battling with a plethora of symptoms for 12 years. I went from running the ironman to beeing just barely able to work. Very inetrested in what I have read and watched. I have been a flight nurse and advanced parcatice nurse for 23+ years and have spent huge amounts of time researching in our health systems libraries on diagnosis and topics trying to put it all togerther…. I have had a variety of other positive labs (low ferritin, very high ANA’s, low B6, Low Vit D) Trying to put it all together. I do have an MRV scheduled for 2 weeks. Very intersting to see others with the same and Dr D’s take on the link.
BrentHi qanik, Do you have a copy of The Driscoll Theory? Are you on any mast cell meds? Diamox? I’m pulling together a research paper for publication that will be of great interest to most of us, I think. I will say, if you missed the video about “should I treat my CCSVI”, I would strongly encourage you to wait for the research paper (at a minimum) before treating venous problems (like CCSVI) with angioplasty. I think we can and NEED to do better, and seeing your high ANA’s hints that you don’t want to cause damage to your vascular endothelium. It just gets everything inflammatory all stirred up sometimes. I hate to talk so indirectly (but must, prior to publication). Again, I got out The Driscoll Theory as soon as I figured out some of this, but will need to wrap up trials for our next step (COMING SOON). Oh, if you want/can share any images from your MRV, that would be tremendous. Hang in, 🙂 Diana
“Hi qanik, Do you have a copy of The Driscoll Theory? Are you on any mast cell meds? Diamox? I’m pulling together a research paper for publication that will be of great interest to most of us, I think. I will say, if you missed the video about “should I treat my CCSVI”, I would strongly encourage you to wait for the research paper (at a minimum) before treating venous problems (like CCSVI) with angioplasty. I think we can and NEED to do better, and seeing your high ANA’s hints that you don’t want to cause damage to your vascular endothelium. It just gets everything inflammatory all stirred up sometimes. I hate to talk so indirectly (but must, prior to publication). Again, I got out The Driscoll Theory as soon as I figured out some of this, but will need to wrap up trials for our next step (COMING SOON). Oh, if you want/can share any images from your MRV, that would be tremendous. Hang in, Diana
I do not have a copy of the book. I looked at the store on here and nothing there then went to Amazon and only one copy ay $999.00! I head for my MRV in 2 weeks and will post results. I have multiple neurologist including the ones from Mayo who are fighting over whether this is all from an autoimmune condition and I should be treated with immunosuppression ( yuck, been there) or its all dysautonomia with all the other fun we experience.
Thanks
Brent“Hi qanik, Do you have a copy of The Driscoll Theory? Are you on any mast cell meds? Diamox?
I do not have a copy of the book. I looked at the store on here and nothing there then went to Amazon and only one copy ay $999.00! I head for my MRV in 2 weeks and will post results. I have multiple neurologist including the ones from Mayo who are fighting over whether this is all from an autoimmune condition and I should be treated with immunosuppression ( yuck, been there) or its all dysautonomia with all the other fun we experience.
Thanks
Brentgosh,qanik, please allow us to talk you through part of it until the slightly revised version is available (assuming $999 is out of your budget? ha). When a book is currently out of print, people with ‘bots’ take a copy and put it at a very high price. This guy has about 2,000 difficult to get books at exactly the same price. OK, I digress. I needed to revise the title, certainly, because when people saw “CCSVI”, they somehow jumped to “treat it with angioplasty”. Yikes. We DO have vein problems — potentially serious ones. To get you started until the revised version is out, please ask us! PalominoMorgan has been here from day 1, as have many others. Most know the basics of “The Driscoll Theory” and can get you started. Meanwhile, numerous other researchers have now accepted and are researching WHY we all seem to have “mast cell activation syndrome — mediator negative”. We respond beautifully to double or TRIPLE doses of H1 antagonists (like Zyrtec — check with your doctor, OK?). Some Xantac can help. If you’re better, then ask your doctor for Cromolyn Sodium (a mast cell stabilizer). Please see the videos on how to get this inexpensively. If you have symptoms of high intracranial pressure or Chiari, Diamox is a HUGE help (ask your doc to try an evening dose). Then you’ll be up to speed, my friend, and ready for ROUND THREE!! As we peel back the diagnostic layers of the onion, and treatment is begun (and needs to go in a certain order), we are hitting the CAUSE of the dysautonomia, not just treating it symptomatically. If you respond well to mast cell meds, or have an abnormal MRV, spider veins, livido reticularis, easy bruising, etc. beta-blockers and too much SALT can make your endothelium worse. NOT good. This flies in the FACE of “traditional treatment”. It took me years to realize, without a doubt, my doctors had no idea why we (EDSers) developed dysautonomia. Please watch some of the vids, as they’ll take you through some of my 9 year journey… Hang in, my friend. 🙂 Diana
gosh,qanik, please allow us to talk you through part of it until the slightly revised version is available (assuming $999 is out of your budget? ha). When a book is currently out of print, people with ‘bots’ take a copy and put it at a very high price. This guy has about 2,000 difficult to get books at exactly the same price. OK, I digress. I needed to revise the title, certainly, because when people saw “CCSVI”, they somehow jumped to “treat it with angioplasty”. Yikes. We DO have vein problems — potentially serious ones. To get you started until the revised version is out, please ask us! PalominoMorgan has been here from day 1, as have many others. Most know the basics of “The Driscoll Theory” and can get you started. Meanwhile, numerous other researchers have now accepted and are researching WHY we all seem to have “mast cell activation syndrome — mediator negative”. We respond beautifully to double or TRIPLE doses of H1 antagonists (like Zyrtec — check with your doctor, OK?). Some Xantac can help. If you’re better, then ask your doctor for Cromolyn Sodium (a mast cell stabilizer). Please see the videos on how to get this inexpensively. If you have symptoms of high intracranial pressure or Chiari, Diamox is a HUGE help (ask your doc to try an evening dose). Then you’ll be up to speed, my friend, and ready for ROUND THREE!! As we peel back the diagnostic layers of the onion, and treatment is begun (and needs to go in a certain order), we are hitting the CAUSE of the dysautonomia, not just treating it symptomatically. If you respond well to mast cell meds, or have an abnormal MRV, spider veins, livido reticularis, easy bruising, etc. beta-blockers and too much SALT can make your endothelium worse. NOT good. This flies in the FACE of “traditional treatment”. It took me years to realize, without a doubt, my doctors had no idea why we (EDSers) developed dysautonomia. Please watch some of the vids, as they’ll take you through some of my 9 year journey… Hang in, my friend. 🙂 Diana
Many Thanks
I appreciate all the feedback. I had a very bad flushing episode about a month ago during a presentation- talk about embarrasing!- flushed, weak, light headed etc. Anyway my neuro thought perhaps masto type symptoms and sent labs a few weeks ago (tryptase and urine that were negative). Interestingly he told me to take some zyrtec until he had results and I thought the one dose a day helped with my brain fog but i stopped when he told me the labs were negative.
Thanks
Brentgosh,qanik, please allow us to talk you through part of it until the slightly revised version is available (assuming $999 is out of your budget? ha). When a book is currently out of print, people with ‘bots’ take a copy and put it at a very high price. This guy has about 2,000 difficult to get books at exactly the same price. OK, I digress. I needed to revise the title, certainly, because when people saw “CCSVI”, they somehow jumped to “treat it with angioplasty”. Yikes. We DO have vein problems — potentially serious ones. To get you started until the revised version is out, please ask us! PalominoMorgan has been here from day 1, as have many others. Most know the basics of “The Driscoll Theory” and can get you started. Meanwhile, numerous other researchers have now accepted and are researching WHY we all seem to have “mast cell activation syndrome — mediator negative”. We respond beautifully to double or TRIPLE doses of H1 antagonists (like Zyrtec — check with your doctor, OK?)… Hang in, my friend. 🙂 Diana
Many Thanks
I appreciate all the feedback. I had a very bad flushing episode about a month ago during a presentation- talk about embarrasing!- flushed, weak, light headed etc. Anyway my neuro thought perhaps masto type symptoms and sent labs a few weeks ago (tryptase and urine that were negative). Interestingly he told me to take some zyrtec until he had results and I thought the one dose a day helped with my brain fog but i stopped when he told me the labs were negative.
Thanks
BrentBRENT!! Don’t stop with the Zyrtec (and maybe add Zantac — more on that later). I’m not exactly “masto-masta”, but to try to figure this out, I had to learn from the best. We usually have negative bloodwork and urinalyses, so we have our own category! We are called “Mast cell activation syndrome, mediator negative”, until we get this all straightened out. Meanwhile, my kids and I are on TRIPLE doses of Zyrtec, AND Cromolyn sodium (well, I switched the kids to Ketotifen — available through Canada– because Cromolyn is taken 4 times a day and is a liquid. That was a killer for them! I’ll bet my left arm (my “good arm”, that you’ll feel better. 😉 Now, unfortunately, that is not all we need, but it will get you started, OK? Then we’ll get to the next layer… If you have symptoms of hydrocephalus, please chat with your doctor about a trial with Diamox (most of us try our first dose in the evening). You may not need it forever, but when our veins SUCK, our ability to drain CSF seems affected, too. Mild hydrocephalus is usually over-looked in our plethora of symptoms. That treatment (with your doc’s OK) should help, too. Brain fog — oh, you mean DEMENTIA?! Been there, my friend — I couldn’t even remember my address nor could I organize or make a “to-do” list. I figured that one out! The brain is back, dysautonomia is gone, and I’m working on our very last piece of the puzzle. Soooo, PLEASE get back on mast cell meds if it helps you feel better. Trust me on this one. The fall-out down the road (what I’m fighting now) is TOUGH — it’s a LOT easier to get this on the “front end” with mast cell meds, if you can. Cool? :)DianaAww, MJ, thanks for that… Absolutely. Although we all have funky genes and are special in many ways, I have no doubt that our study medications will stop your POTS and dysautonomia. Now, we likely have other issues, but getting rid of that has been a God-send, I must tell you. Were you able to try mast cell meds (Zyrtec, at a minimum)? If that helps, enjoy it! However, I’ve learned that we need more than mast cell treatment. One mast cell doctor I know thought that mast cell meds would do it 100%. Rats, no, but the rest is not expensive, and I can hardly wait to show this!! Meanwhile, I waited 9 months to see a “POTS specialist” who also DID NOT EVEN TEST ME (years ago). I understand your frustration. On the TTT (finally!), my heart rate went from 75 to 164 in 10 minutes. Every year, I went to Mayo to have it rechecked, and it was either identical or worse (BTW, we got “pre-covered” by my insurance company to go to Mayo.) Soooo discouraging. Now, no POTS or dysautonomia. Zero. And it only took me NINE YEARS to figure it out. (ha). I’m soooo glad that coming to the forum helps you to feel better, my friend. That is one reason it is here. Hang in. I’m working with researchers and attorneys to get the studies in place. Yea, attorneys… and you thought doctors were hard to deal with?! Big hug, Diana
Hi Dr. Diana :).
I know I am in one of those ‘fragile’ states, but I cried when I read your email. No, I have NOT tried Mast Cell Meds nor have I been able to get Diamox. THE DOCTORS ARE NOT LISTENING TO ME AND NO ONE IS HELPING ME. I am getting no where and it is so depressing. For me, you are the only one that understands everything. Dr. Diana, can you PLEASE look at this pic of a HUGE vein in my neck? Does this mean I have CCSVI? I emailed you a 31 second video of SEVERE body-wide vein distention when I sent you my mailing address for the symptom check list. I am hoping you can check it out. It could be an indication of SEVERE mast cells. Not sure. But can’t live like this anymore and not getting anywhere with the doctors. Perhaps if you can give some feed-back on the neck veins pics and the Dysautonomia video, and I can tell the doctors your opinion then maybe they will FINALLY do something to help me??? Also, I sent you my MRI CD back at the beginning of July, and I fear it may have gotten lost in the mail. Did you receive it?
Thanks Dr. Diana. This site REALLY is a life-saver for me. And I am sooooooo glad your POTS is gone 🙂
MJHi Dr. Diana :).
I know I am in one of those ‘fragile’ states, but I cried when I read your email. No, I have NOT tried Mast Cell Meds nor have I been able to get Diamox. THE DOCTORS ARE NOT LISTENING TO ME AND NO ONE IS HELPING ME. … Perhaps if you can give some feed-back on the neck veins pics and the Dysautonomia video, and I can tell the doctors your opinion then maybe they will FINALLY do something to help me??? Also, I sent you my MRI CD back at the beginning of July, and I fear it may have gotten lost in the mail. Did you receive it?
Thanks Dr. Diana. This site REALLY is a life-saver for me. And I am sooooooo glad your POTS is gone 🙂
MJHi MJ, this breaks my heart. Of course I can’t diagnose you or treat you over the internet, right? My hunch is that you have venous disease (vasculitis similar to varicose veins)all over your body, as I do. I can’t in good conscience recommend CCSVI angioplasty for you — my research is far down the path, now, which is why I’m trying to expedite the trials. I cannot tell from your photo what is going on, beyond likely vessel disease. This is why we have the “serious stuff” — MRV’s and MRA’s. Have you seen a vascular specialist? Dr. Black is familiar with EDS and arteries (but not so much veins). I’m not sure where you live (did check the part of the forum for “good doctors”?). I would think that most doctors would want and MRV/MRA for you, at a minimum. What tests have you had done? (And HECK, I never received the CD’s! I’ll scope out my office to be sure, but I’m actually fairly organized with those…). Oh, do you have any fundus photos of the back of your eyes? Maybe that will give us some guidance.
To start on mast cell therapy, the very best thing you could do is get on some Zyrtec (over the counter!). Dr. Maria Castells is now recommending that we take it 3 times a day. That makes all of the difference.
I have an advocacy agreement on my front page you can click on. If you need lots more one-on-one, it may be the best way to go.
Finding doctors can be hard, but not impossible… Maybe we can all help you out if we knew where you lived. Hang in, my friend. You are stronger than you know… Diana
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