March 28, 2013 at 2:58 pm #424
I am so thankful for all the information on this site.
I know that most of you are not doctors, but some of you have seen enough of these you might be able to tell if you think there is an issue in the scan. I am wondering if my scan looks like there is a bit of mild “Chari 1 malformation”? My headaches hurt everywhere, but feel like they are mostly in my base of skull. I have told my doctor my headaches feel like they are in my “brain stem” and this was before I found all Dr. D’s information.
I have started wearing a soft collar at night for the last three weeks and sleeping propped up and it has helped a few of my symptoms. I have tried The Canadian version of “Zyertec” which is “Reactin” and it does help. It just did not take it away completely. Can I take more than one? They are labeled 12hour and 24hr. Do you disregard the label if you are using it for intracranial pressure? I have gotten my ENT to watch a few of the videos and will be seeing him next week again. I called his office the other day during a real bad headache and said I want to try the zyrtec (I am on a PPI) to see if it will help, I wanted a dr. too know what I was doing. He said go ahead and try, this may help. I have a sulfa allergy so I know Diamox would be out of the question. I get hives with sulfa drugs.
I will be going to my Optometrist next week. I have never had to wear glasses in the past. The blurred and slight double vision is troubling. My left eye feels heavy at times and closes a bit more than the right and sometimes I notice a difference in pupil size. Could this be an optic nerve issue and would it show up on an MRI? I included MRI PIC.
My GP sent me to a Neurologist who is a “headache specialist”; he was not as helpful as I would have hoped he would have been. He did not think my symptoms’ were related to Eagles Syndrome I have that too, which is fine, but he did not offer up much alternative help either other than medication. He did the CT angiogram and MRI. He was dismissive about everything and said follow up with your family doctor even though things showed up on the MRI results, he said they were normal!
“MRI Findings: No discrete lesion identified in the brain stem. There are multiple high signal intensity foci in the periventricular and subcortical white matter especially in the frontal lobes. A few high signalintensity foci are seen in the juxtacortical white mater and in the centrum semiovale. The high intensity foci may be associated with migraine.
White matter demyelination disease is in the differential and requires clinical correlation. No obvious lesion identified in the corpus callosum or cerebellum. No significant mass effect, midline deviation or extra-axial collection seen. The ventricles and sulce appear within normal limits for age.”
I am frustrated, I still have numbness and tingling in my arms and hands that comes and goes and is really pronounced in warm water. I just want answers to all that is going on and am I tiered of having to do my own research to find out what is going on with me. I wish one of my doctors would pick up the ball and send me to a competent dr. to follow this through until we have a diagnosis and answers to what is going on. I feel EDS is most likely the over arching issue and the other things symptoms of it.
Thanks for your input.
RebeccaMarch 28, 2013 at 5:00 pm #3575BarbaraParticipant
The important thing for all of us, is to get our raised intra-cranial pressure down, one way or another and, if cranio-cervical instability is playing a part (i.e. if you are a stretchy type EDS person) you may need to stabilise the cranio-cervical joint with a good supporting collar (like a Philadelphia – NOT a soft collar as this does not support the head), when you’re doing anything that involves a lot of head movement. I would avoid flexion at all costs because myself and others have found this exacerbates symptoms.
More recently it was suggested to me, by a practitioner, that Evening Primrose Oil (or more precisely VegEPA) can help get rid of chemicals in the brain that there is an excess of. Whether this is a significant amount or not, I don’t know but one would think that this would reduce overall volume and help relieve symptoms.
I’m only just starting out using this, so time will tell. If anyone has had any measure of success with this it would be nice to hear.
Note: I have stopped using the Evening Primrose Oil (Aug 13) as I felt it actually made me more ‘Foggy Brained’March 28, 2013 at 8:07 pm #3576
Thank you Barbara,
I have been thinking after just 3 weeks of wearing the soft collar, although it has helped to reduce some of my symptoms, it does not feel like it is stablizing my head enough. I still find myself squishing it down, now that I am getting used to it. It bruised me at first.
RebeccaMarch 29, 2013 at 10:53 am #3577
You mentioned the Philidelphia collar. It looks like it would give more support for sure. I am going to order one and give it a try. I know the soft collar has helped reduce some of my symptoms. Headaches not as often, not as much shoulder, neck and arm pain, hoarse voice or voice dysphonia is less frequent and less tinnitus has been reduced, numbness and tingling and pain in arms and hand as well is less there are others symptoms too but these are the main ones I will list. The tension and pain cycle felt like it had been kind of eased for a while and that without drugs I was so happy. I will let you know how the other one works.
PS, I notice that there are two different types of philidelphia collars have you tried the Philadelphia Patriot One-Piece Cervical? It looks like it might be cooler for summer?March 29, 2013 at 4:37 pm #3579BarbaraParticipant
Wearing the original Philadelphia collar was a life-saver for me, I’m certain of it. I was waking 3 times a night with all over body pain from hell and barely able to move. This pain fell to 3/10 overnight, I couldn’t believe it. I used to get severe pain at the base of my skull and a nagging neck and shoulder pain, on and off throughout the day, a real drag, this went too. The arrhythmias became less profuse, over time the fasciculations calmed right down, less intense, shorter duration, less often. These are just things I remember off the top of my head (it was 5+ years ago). Certainly the best treatment I have found, better than any drugs, for sure.
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); Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium) deficiencies, CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies . . . and now Myalgic Encephalomyelitis (M.E)!
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