[TBird]

Thanks, Dr. Diana. I just saw this reply. 🙂 There are so many things connected to this, it’s crazy. I’m always being led further and further down the rabbit hole, it seems. But I have a promising link to nailing down another condition I have that has a huge overlap with EDS/hypermobility (50% of women clinically present with hypermobility with this issue, according to one of the leading experts on this condition) that it a totally new direction that I hope helps to fill in some of my missing pieces. I appreciate all the information that you share. it has been helpful to share it with open-minded professionals and I am closer and closer to getting to the bottom of this with all the connections you’ve uncovered. 🙂

[TBird]

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. 🙂

[TBird]

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
Abstract

We 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…

[TBird]

Hi 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…

[TBird]

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. 🙂

[TBird]

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!

[Author]

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