NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › In Desperate need of advice
- This topic has 5 replies, 4 voices, and was last updated 8 years, 6 months ago by Dr. Diana.
October 28, 2014 at 7:40 pm #741jlreedParticipant
I am 29 years old and have been serving in the Navy since I was 17. I grew up being a “accident prone” child. I was always athletic specifically softball and always played the catcher position. I began having knee trouble that eventually turned into my first surgery at age 19. Since then I have dislocated or sub-luxed just about every joint in my body including 2 or 3 ribs (didn’t even think that one was possible). Most of the time I just pop what ever part it is back in and go on about my business. Over the last 2 years I have become overly exhausted to the point that I just feel like I can’t get up in the morning. I am diagnosed with EDS hyper-mobility/CFS/FM. During my last bi-annual physical readiness test in May the push-up’s and sit-ups went just fine but when I started running everything seemed off. I finished the 1.5miles and passed out. Since then I have been tachycardia most of the time. My 24hr halter monitor revealed that my heart rate was well above 100bpm every hour, the tilt-table was negative for POTS. My heart rate did rise from 82 to 118 but after 2 minutes started going back down and would occasionally would rise back up through out the test. My Cardio Dr started my on Toporol XL 25mg and then raised in to 50MG to treat inappropriate sinus tachycardia. I always wake up with a pressure headache in the back of my head/neck in the am, but last week I experienced a Headache like never before. I was completely disabled from the pain. I lost control of my speech, couldn’t find words, I was stuttering, the left side of my face was numb(this has happened a few times when my symptoms get bad) It felt like something was stabbing inside my ear and the back of my skull. The feeling of pressure was over whelming. I was out for 4 days completely horizontal. They did a MRA/MRI without contrast and told me that my headache could not be from high ICP. They told me I had sinus disease. These are the best 2 images I could get. Any help would be very appreciated. I know there is a lot missing from this story, it just seems like so much to fit into a post.
Thanks in advance,
JessicaOctober 31, 2014 at 6:50 am #5094LavenderHippieParticipant
Hi Jessica, when i read the symptoms from your headache, my first thought was a TIA or actual stroke. I am assuming that that was ruled out?November 5, 2014 at 4:54 pm #5100Dr. DianaKeymaster
I’m so sorry for your suffering, Jessica. I’m curious what your doctors meant by “sinus disease” — are they referring to nasal sinuses or cranial sinuses? One reason I wanted to get the information out in the book was because too often CSF pressure problems are not easy to diagnose from our MRI’s. My MRI looked very much like your image — a bit too much CSF above the brain and the sella was partially empty, suggesting high intracranial pressure. I felt the sensation of pressure. This is where Diamox was an easy trial to see if the pressure was high (I responded immediately and was able to avoid a brain shunt). Could a trial with Diamox help your doctors with differential diagnosis info without a lumbar puncture? Fingers crossed! 😉 Big hug,November 10, 2014 at 9:23 pm #5104jlreedParticipant
My Doctor did not elaborate on the specifics of the “sinus disease” just that it was there. This was the original report:
The gyri and sulci are normal with preservation of gray white matter differentiation. There is no acute ischemia, hemorrhage, or mass lesion. There are no significant foci of increased or decreased signal. The ventricles and extra-axial spaces are normal. Normal flow-voids are seen at the skull base. Internal auditory canal structures are normal. There is mucosal thickening in the left frontal and maxillary sinuses with an air-fluid level in the left maxillary sinus. The mastoid air cells are well aerated.
The superior and inferior sagittal sinuses, transverse sinuses, straight sinus and sigmoid sinuses are patent without evidence of filling defect. The smaller caliber sinuses and occipital sinus or suboptimally evaluated. IMPRESSION: Normal noncontrast MRI of the Brain. Normal MR venogram submitted of the brain.
It was then amended to state:
Amended Report: There is inflammatory sinus disease.
Most labs have been normal except I have low levels of Magnesium and Phosphate and a high platelet count. Also I came back positive for Rocky Mountain Spotted Fever although I have never had any symptoms for this particular tick borne illness.
I am beyond baffled now. I was convinced that I was suffering from high intracranial pressure. Being in the military makes it very frustrating since the majority of our patient population is health and no one has heard of any of my conditions.
Many Thanks for you response I am a huge supporter of your work and I know that it will change medicine as we know it!November 11, 2014 at 10:25 pm #5105BarbaraParticipant
This is where I think your problem lay. I take it this MRI was done laying down? I suspect that when you are upright your odontoid (the peg-like tip of your C2 cervical vertebrae) is putting subtle pressure on your anterior brainstem. The brainstem is involved in controlling the autonomic nervous system, that’s probably causing or contributing towards your tachycardia. It would also contribute to you having difficulties running. Do you experience more, or worsening, symptoms when you look down (putting your head in flexion) ?
You will need to compare this MRI with one taken in the upright position, to be sure. If you look closely at your MRI, you can see some slight signal changes to your anterior brainstem, on the MRI where I have put the orange dots. This suggests there may be something amiss with the biomechanics of your craniocervical junction. You need to look at the angle between the yellow lines (Clivus – Axis Angle or ‘ Angle of Wackenheim’) in both positions too, which will confirm it, if thats what’s affecting you.
Also the green V shaped gap suggests that you may have some instability between the C1 and C2 vertebrae. You also need to look at the Grabb Oaks measurement, I’ve posted about this measurement before, if you want to do a search for it.
Hope some of this helps
(UK)December 2, 2014 at 12:07 pm #5128Dr. DianaKeymaster
If anyone missed Jessica’s update, it is here: http://prettyill.com/forums/viewthread/1062/ As she reported: “First I would just like to say thank you so much to Dr. Diana and Ms. Barbara for their responses and advice. I ended up back in the hospital after I developed very sever Neuro symptoms similar to parkinsons’ disease. It took a lot of persuading but they finally agreed to consider the increased inner cranial pressure. They did a LP and drained 16cc of CSF and I instantly felt relief. My starting pressure laying on my side was 26 and they got it down to 15. They immediately started me on diamox 500mg BID. I am not convinced that the dosage is quite where it needs to be, but I am still very hopeful that this is the right direction. I have had mild side effects, but nothing compared to what I was living with. My IST has completely disappeared and my heart rate has consistently been in the 70’s- low 90’s, way better than the 150’s-180’s. It is so amazing!!!! I have stopped taking the beta blocker, HCTZ, doxycycline. I am just so blessed and happy and relieved! The Drisocoll theory has saved my life! There just are not enough words to describe my gratitude. Best wishes to everyone,
Jessica” AWESOME news, and we are all so happy for her. 🙂
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