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Hi All,
I’ve been a lurker for a bit and have gotten diagnosed with EDS, MCAS and POTS since finding this site/forum and all the valuable information here. The one thing I have not had checked (confirmed, rather) is Intracranial Hypertension.
Here’s a quick overview of related issues:
*“Normal” neck MRI- just some c5 c6 degeneration (see below) from rheumy (who said not EDS, but “fibro”… I finally got him to agree to Joint Hypermobility Syndrome… and he was recommended on the EDNF website!)
*Neuro who was familiar with the EDS/MCAS/POTS triad diagnosed me with “atypical migraine with aura” She said per visual exam I didn’t have Chiari and I left my MRI CD with her, and she said it looked normal. She said all these were migraine, and the vision things were also likely migraine. I don’t experience “headaches” much, but I have very bad neck pain (hence “atypical.”) She said wetness in my ears with face pressure/hurts upon waking she said “nerve related” and sleep paralysis, she said to see a sleep specialist, didn’t sound neuro related.
*Following a chiro adjustment (that prompted all my research and led me to Pretty Ill and numerous specialist visits)- severe neck pain like whiplash, could not move without severe dizziness, some vertigo, nausea. Grayed out spot in my vision (went away after a day). I could not hold my head up for a couple weeks. Needed a soft collar. No one seemed too overly concerned about any of this, but I did get a referral for PT and they recommended vestibular therapy along with neck therapy. I told her all of this, she didn’t seem to think it was related to anything. For the time being, I felt relieved and maybe that I was overthinking things.
Fast forward a year. I read Dr. Diana’s new book and I think this is something I need to revisit. I had a high sodium canned soup the other day and didn’t realize it was 2 servings, so I overloaded with sodium. I had “sleep paralysis” I’d connected a few times to using chicken stock in my dinners. I told my hubby I was going to have sleep paralysis that night from my sodium overload (Yeah right, salt is good for POTS!). I didn’t have sleep paralysis, but I did have severe pain in the ear I was laying on and a lot of wetness in the ear, and a major headache all day…. so I am seeing a neuro-opthamologist in a month. I want to come armed with info!
Based on your (non-medical advice, for informational purposes only 🙂 ) opinions, how should I approach this doc? (Or even my primary doc who has been very open-minded?)
And I will post 2 views of my cervical MRI. Do you see anything that does not look normal? I think I do compared to the images I’ve seen here. But maybe I’m not objective enough.
I appreciate any advice and direction, as well as comments on the MRI itself.
Thanks to you, Dr. Diana for this forum, and to all the members who I have learned a ton from so far!
You are at a similar point as I am, trying to convince the doctors of IH, and finding out more about what else is wrong.
You may have Chari 0 if not Chiari 1. Your brainstem does not look completely normal to me. For Chiari, you can get a CINE MRI done or upright MRIs.
Do you have a brain MRI? Look for retroflexed odontoid, excess fluid at the top, areas with not enough space for fluid, empty sella, and other abnormalities. Since you had problems with your neck, look into CCI too.
Because of possible CCI, I would not do most PT until you have a specialist tell you it’s safe for you.
Thanks for the reply, Violet.
My brainstem did not look normal to me either, and this MRI was done lying down. I’m afraid to know what it would look like upright!
I did not have a brain MRI. The neuro didn’t think it was necessary, and all my symptoms were explained by “atypical migraine with aura.” But I want to ask my doctor for a brain MRI- upright if I can get it. I am going to share with her some of the excerpts from Dr. Diana’s book in hopes that she will agree. She’s been pretty open-minded with things, but I think sometimes she feels kinda hopeless on how to help me.
I had simple X rays and they said I had no cranio cervical instability. But I can feel my neck going out of alignment. I was getting PT the last 15 months and I’d feel ok, then I’d stand up, do PT exercises (or not) and I could feel my neck muscles tense up and they were immediately no longer relaxed and went back came the pain. I had the PT check once and she was shocked after 5 minutes of doing exercises that it was as tight as it was when she started. Sigh.
I think I have been focusing too much on neck pain and not considering that it is likely from my head/intracranial hypertension. I got a cold and it seems to be back with a vengeance.
I think I will list all the specific areas that the ordering doctor can have the MRI-reading doctor look for. Maybe if I point them in that direction specifically, I will be less likely to get another “normal” result.Hope you find some answers soon too. I don’t know what I would do without the internet and wonderful practitioners and patients sharing their stories!
Do what Dr Diana suggests with the fluid, if you have any more fluid come out of your ear. She says to save it and get it tested, to determine if it’s CSF. You only need to save a little of the fluid.
Maybe you are lucky and have no CCI. For CCI have your MRI and symptoms looked at by a neurosurgeon. I wouldn’t believe anyone except a good neurosurgeon who is familiar with CCI.
I would try and get a supine brain MRI first instead of upright MRI.
I will definitely try save the fluid next time… (Hopefully there is no next time and I get this taken care of) It was a little, maybe enough for a q-tip. Not drops, but certainly wetness, and out the same ear it usually is.
Looks like Dr. Francomano has someone she refers to within a couple hours drive from me… going to try and get an appointment. I think that it will be pretty safe to say I might get taken seriously there.
Violet, why is a supine MRI recommended first? I thought I remembered seeing an upright was better to look at Chiari. I’m proposing an MRI to my local doc Wednesday, want to ask for the best thing…
Thanks for your responses. 🙂
Hello!
I am in the same boat as you but finally got a dr to prescribe diamox and it really helps with the neck/head pain!
But I am on the waiting list to see dr francomano. I dont have an appointment with her until February 2016!
I was wondering who they recommended for you to see and where do you live? I live in new jersey and am trying to find a dr well versed in the correlation between EDS, POTS and mast cell issues.
Thank you!
KellyHi kfelty,
I saw on an inspire board that Dr. Francomano recommended Dr. Virginia Kimonis at the University of California at Irvine Genetics Center. I’m about 80 miles away inland. I’m sure it will take me several months to get in.
I was doing some research and someone on the IIH forum mentioned Gliacin as a a natural alternative to Diamox. (I have problems with rx meds, and already have kidney stones, so I wasn’t keen on the idea of Diamox and was looking for an alternative). Gliacin has Boswellia Serrata extract (Frankincense) and my headache I’ve had the last week is so much improved- and after 30 minutes! Relaxed shoulder muscles, more range of motion. I’m not sure how long it will last, but just to have a break is great.
I saw a doc in San Diego for mast cell, he sent me to the cardiologist who recommended salt/fluids and compression wear, but I felt worse in my head and ill and saw a weird blue light in my peripheral vision. I had a hunch it was related to the compression wear and head pressure, but thought maybe I was overcompensating for the low pressure and it went too high in my head. I’m thinking now it probably was already high in my head (not low like my normal blood pressure) and that sent it over the edge. I’m taking zyrtec, but I have gut problems and a host of things beyond this and didn’t want to do H2- I only do them when I need to. The neuro who worked in conjunction with the allergist and cardio said I had “migraine.” I went back and looked at notes I typed up and asked questions from and gave her a copy and I specifically mentioned high intracranial pressure and chiari. So, maybe I do have migraine, but I think I have something else going on too. I need another opinion.
I hope you can find someone local before 2016! I just did a lot of googling for my area and joining lots of groups to find out the info I did. In fact, found the geneticist who diagnosed my daughter on here. Sadly, she wasn’t connected with anyone who did treatment or management of any type. But it got the ball rolling and gave me some validation and answers. And that meant a lot…
How much Gliacin do you take? I tried Boswellia extract and it doesn’t do anything like Diamox for me, but my dose was low.
I feel “migraine” is what all the doctors say if they know little about IIH, Chiari, etc.
I’m planning to get on Dr Francomano’s waiting list. I don’t know if any other doctors understand EDS, mast cells, IIH, etc to the degree she does.
I just took the Boswellia Serrata from a local health store 250 mg. I’m hoping it wasn’t coincidence. Still feeling ok and it’s been a couple hours.
That sounds about right with “migraine” being a catch-all term.
I meant I hope you also find someone in the meantime close to home. Yes, it would be definitely worth it to see her- she’s a guru from what I have read. It would be nice to find someone who could take the lead as a doctor… I am exhausted researching a full work week’s worth every week as I suspect many of us are. The more and more I dig, the more I find…
Like this on Pub med :Headache. 2013 Nov-Dec;53(10):1666-9. doi: 10.1111/head.12242. Epub 2013 Oct 29.
Can elevated IGF-1 levels among patients with Ehlers-Danlos syndrome cause idiopathic intracranial hypertension?
Kurian M1, Solomon GD.
Author information
AbstractWe offer for consideration a possible association between hypermobility syndrome seen in Ehlers-Danlos syndrome and risk of potential development of idiopathic intracranial hypertension – mediated primarily through the effects of insulin-like growth factor-1.
Unfortunately, they only had the abstract, you have to pay for the full article. Trying to see if it is posted in full somewhere else…
Here’s a quick reply because I’m a bit bleary-eyed!
Red horizontal line – there seems to be crowding at the foramen magnum (opening at the bottom of your skull) where the lower part of the hind brain (cerebellar tonsils) sits within the opening, where it should sit 5mm above this.
Blue vertical line – I think this distance looks a little long, between the back of the skull and C1 – I maybe need to look at that more.
Green vertical line – there is loss of lordosis (the normal ‘c’ shape of the spine) in the upper cervical vertebrae, from C4 upwards
Pink vertical line – there is some anterolisthesis (forwards slippage) of C4 on C5, it’s less than 25% therefore grade 1.
Purple vertical line – this could just be an artifact or, if it’s not, depending on your age, this could just be the central canal of the spinal cord, or this could possibly be the beginning of a syrinx
Orange vertical line – there seems to be some contact here (maybe) of the spinal cord, with the back of the spinal canal wall, with additional pressure from the back of C2 and C3. The spinal cord maybe aggravated by movement or position, this could irritate the cord and cause intermittent or persistant symptoms.
Turquoise horizontal line – or more to the point below the turquoise line, where we’ve lost the centre of the cord, could indicate a degree of scoliosis.
Good info on the Frankincense by the way – worth a try by those in UK still unable to get Diamox. I find that one drop of Frankincense oil diluted with 20mls of Coconut oil, applied to the skin, helps skin sores heal quicker too – anyone else tried this ?
Good advice Violet too. Correct me if I’m wrong but I think it’s best to get a supine brain MRI done first (before an upright) like Violet says, so that you can see whether gravity has any effect on the cerebellar tonsils i.e. – do they protrude further through the foramen magnum when upright. Supine MRI is the benchmark, if you like.
You are a rock star Barbara!
Thank you so much. Now I have some really specific areas to point to when I ask about my MRI. I have found that I only get real answers from docs if I search out the specialists and spoon feed them specific information based on my research and assumptions. Then they are able to come to the conclusions that I suspect. 🙂 I only was focused on the tonsil herniation, I had no idea about the other stuff. I really appreciate your food for thought.
Frankincense is going ok. The headache did come back in the morning. Apparently Gliacin can take 3-5 weeks to notice a difference, 3 months for optimal help. Maybe there was a placebo effect, or maybe my body responded because it was new, but then the next time not so dramatic? Not sure. But apparently there are a lot of other positive effects- antibacterial/antifungal, helps gastrointestinal… maybe I can “kill several birds” with that.
Elevating the bed has helped. No “sleep paralysis” after having it a couple times at night a few days in a row.
Hoping I am headed in the right direction. Thanks all for your help. 🙂
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