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qanikParticipant
The only way to get a true reading of the pressure in the dura is to invade the space. So you can have an LP which many of us have had and a you have said many have post puncture leaks when they are done. Then you get the lie flat and drink caffeine and hydrate talk and if that doesnt work then you get a blood patch. During trauma many times when there is bad brain swelling doctors will drill a hole through the skull and “bolt” the area. They slide a catheter under the skull sometimes in a ventricle of the brain and other times just under the skull but within the cranial cavity. This catheter is then hooked up to a transducer which will give you a constant ICP and is a true measurement of the pressure in your head. These can stay in for days and give you a “trend” of the pressures. The “bolt” term comes from the use a screw that screws into the skull to hold the catheter in place. Also some docs think this is easier on a patients that leak a lot post LP puncture as its the very top of the dura and leakage should not be a factor. That being said its still a pretty big deal and i have had one.
Next, there seems to be some misunderstanding of Cerebral Perfusion Pressure ( CPP) on here. Yes folks have the calculation right- CPP= MAP(Mean Arterial Pressure) – ICP ( Intracranial Pressure). CPP is used to asses whether the brain is getting enough oxygen and nutrients when there is severe swelling, usually from trauma or a tumor. You can not estimate any of the numbers. To get a true CPP you need to have a true MAP which is pretty easy (diastolic pressure- 1/3 (systolic-diastolic). So if you took your BP and it was 120/80 then the formula would look like this 80+ 1/3 (120-80). 80 + 13 would give you an MAP of 93. The only way to get the next number (ICP) is to invade the dural space with an LP or a bolt in the head. You cant estimate. The formula is set up to give you a CPP as you cant guesstimate any numers. So in my example if your MAP was 93 and your ICP was 20 then you would have a CPP of 73. The last 15 or so years the trend in trauma and brain injuries has always been to “optimize” the CPP by elevating the blood pressure on very sick patients. CPP Below 60 and most believe you are not “perfusing” your brain and are having irreversible brain damage. If you falsely elevate the BP on these patients with IV medications then you can increase the CPP regardless of how high the ICP is just by manipulating the calculation. All sounds confusing but its not and is very useful with traumatic head injuries. really not so much for us. I dont know if that helps or not
QqanikParticipantJust as Dr Diana said you will see the BP go up instead of down. I was dx many years ago at Mayo ( not my favorite place) and had the exact test she describes above. My catecholamines were off the chart when drawn after 30 minutes of lying flat in a dark room and upon tilt ( off meds for 2 weeks)here is what i got- Resting lying flat HR 78, BP 132/78—upright 1 minute HR 102, BP 154/96, upright 3 minutes HR 124, BP 188/108 Upright 5 minutes HR 148 BP 204/122. Test discontinued at that point by autonomic doctor. Although I am much more controlled now with beta blockers I still fail the tilt with my HR.
QqanikParticipantThanks Dr D. So far MRV and MRA are read as normal. MRI of frontal noodle shows chronic sinus inflmation an empty sella and inflammed optic sheaths.
Thanks
BrentqanikParticipantBarb,
Thank you- I do wear a hard collar from time to time. BP is good as I take beta blockkers for the hyper pots.
Respectfully
BrentqanikParticipantI too carry the same 3 diagnosis as you. I also take a beta blocker ( bisoprolol 5mg every day)
Beta Blockers trigger degranulation of the mast cell and also plays a role in the pathway of epi release when needed for anaphylxis. Sometimes Glucagon is needed as well as epi if an allergic reaction becomes bad and you are on a beta blocker. Its actually much more complicated than that but ill leave it at that.
AS well as the EDS I have hyper pots and have trouble with epi/nor epi surges and wild BP and heart rate swings. I have tried a plethora of meds, Calcium channel blockers, clonidine, and 5 other beta blockers before we settled on the bisoprolol. The docs I saw at mayo and my dysautnomia doc that the benefits outweighed the risk. I am for the most part very well heart rate and BP controlled and the surges are few and far between now. I know some of the folks I have seen want me off the beta blocker for the MCAS but at this point I am staying on the little bit.
I have so many other things going on ( neck pain, head aches,multiple dislocations, sleep issues, horrible GI issues) currently that the beta blocker issue is one I am leaving alone.Hope that helped
BrentqanikParticipantI had the diagnosis for 7 years prior to heading to the Mayo clinic and getting the real story, it wasnt MG. Do you have positive antibodies and have you had a single fiber EMG which will tell the story its its MG. Most cases of MG can be well controlled with mestinon and immunosuppresants. I also had the droopy eye (ptosis) and swallowing difficulties. Make sure you are getting the right test by a center and doc that specializes in MG.
Brent
qanikParticipantgosh,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
BrentqanikParticipant“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
BrentqanikParticipantAny idea how much time? I am having quite a bit of trouble with the illness lately and I work full time but would be willing to help
Brent
qanikParticipantI have pretty bad small fiber neuropathy. It used to be just in my feet and then shin area and then hands but now I actually get it in the face and neck and upper body. mine feels like a horrible sunburn with intermittant cold kinda of dead feeling feet My sweat test clearly showed the areas when I was at Mayo.
As far as the creepy crawlies – i have had that feeling as well as the fasiculations and twitching non stop sometimes. I had a positive voltage gated potassium chanel antibody and they told me one of the anti seizure meds would help the feeling. I took neurontin for awhile and it did stop it but it made me even more tired and fatigued which is not something I could deal with. So i have the twitching backBrent
qanikParticipantI use it every night a small bit for sleep. 0.25mg. Its the only thing that has ever worked for me without and big side effects. I use it on a rare occasion when I get the epinephrine surges that dont go away in a timely fashion. Its a longer acting benzo then most.
Brent
qanikParticipantBarbara 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
qanikParticipantExcuse the spelling as I am having blurry vision at the moment
Brent -
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