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That’s where my problem lies, I don’t think I would be able to convince a doctor to give me a dose to even try based on clean MRI & lumbar puncture. But I personally do think it would help me, the pressure in my head is intense.
Do you know if prednisone increases blood volume too? I was given steroids because they didn’t know what else to do with me and that made everything worse and I had horrible side effects.
Hi Dr Diana,
So how was this measured for you? I was absolutely convinced I had IIH but my lumbar puncture was normal so that was ruled out.
I’m trying to get my head around all this and struggling a bit due to awful brain fog at the moment but I am due to be having some histamine allergy testing on Friday – would this be for the same sort of thing?
Interesting stuff, as always!
Did Dr Sclafani treat you or do you mean you’ve been ‘learning’ from TIMS? Do you know if ballooning valves is common practice in other types of stenosis/valve problems?
I’m 50/50 about getting treatment, my desperation changes daily, with my symptoms! My mum had a major varicose vein removed in her early 30s. Wish I could have mine removed in a simple procedure!
Hi Dr Diana,
Do you have any good links/or explanation for what mast cells are and how/why top treat them? A quick search on Google brings up a lot on treating mast cell tumours in dogs :-/I’m currently doing the FODMAP diet which is lactose, gluten and some fruit/veg free – it’s helping my IBS a lot but I still wake up with a ‘stomach ache’ each morning that almost feels like my stomach has been clenched all night, if that doesn’t sound crazy.
I do feel that glandular fever was my trigger – I am almost certain it started my thyroid problems (it’s called GLANDular fever after all) as I’ve had fatigue and less-than-normal energy levels since that happened. I suffered quite badly with it for about 6 months.
Hmm, I have things such as Lymphocytes and Leucocytes if they are of help?
So, were you treated for Lyme or did you decide that something else was at the bottom of it all?
Hi Chicken Boo, IJV valves! My thoughts honestly, vary with the tide of information. You probably know I just spoke at the National CCSVI Society meeting in Canada, so I got to rub elbows with the best, and we are learning as we go. My IJV valve was faulty on my right side and I had a large IJV (“garden hose”) on that side. And yuck, I can FEEL the reflux (on both sides to some degree), so I was fine with the IR ballooning that valve to toast (an 18mm balloon). But I wasn’t on mast cell treatment at that time, and now both IJV’s ache a bit (9 months later). So I wonder about an endothelial backlash with an immune reaction now. There is so much we don’t know yet, but my gut is telling me to open the valve and take all precautions to avoid an immune response (including mast cell treatment and rigorous trigger avoidance) before and after treatment. Next week, I may have a different answer! ha
Hi Dr Diana,
Mast cell treatment, must admit I don’t know much about that so will have to look into it 😉I do not have significant reflux (but I have *a little*) in my veins but I often getting fluttering/pulsating sensations roughly where the valves are (mine are assymetric). I always thought I was getting some sort of strange sensations in my thyroid gland but now I realise it’s vein/valve related.
What did they do to modify your valves? If anything?
Have you read about Dr Zamboni’s new thoughts on the valvulotome for the IJV? I feel this is heading in the right direction… For me personally I do not have MS so I guess I can currently say there’s no doubt in my chicken and egg scenario (no pun intended!) so WHY am getting stenosis – my money is on faulty valves due to hypermobility.
And the possibilty of Lyme – still 50/50 on that one.
Hi OFH,
Thanks for the reply.
No, I do not plan to have treatment until things are more developed – my fear is that I may end up with worse synptoms if I were to restenose or worse to clot etc. I am also not comfortable with current treatments to disable the valves but I believe Zamboni is current working on a device to trim the valve leaflets or similar. If I ended up with a worse problem than I started with perhaps it could give me MS!
I too wondered why the jugulars and azygos should be the only veins with problems – after all if it’s connected to EDS that could easily mean valves problems all over the body.
I have not heard of pelvic congestion syndrome before but interestingly I had to go for a pelvic U/S recently due to what I thought was pain in my right ovary – the scan was all normal but the gynae did say that the pain was very low for ovary pain, close to the iliac *something* (I missed what he said exactly) so perhaps that’s more vein related pain.
Hi Chicken Boo (love the name!) – did you know that Hashimoto’s is very common in EDS? Hmmm. Oh, as is hyperreflexia (expecially below the waist), CCSVI, Vit D deficiency… Interesting, huh? I was tested no less than 4 times for lyme! Do you know what your TNF-alpha, IL-1 and IL-6 readings are? We’re comparing notes! Thank you, and WELCOME to the party! 🙂
I have hyperreflexia all over! I’ve always had VERY responsive knee reflexes but my arms do it too, been that way since I was a kid.
I’m not sure if I have those measurements you’ve mentioned in my test results, I will double check but they are not terms I am familiar with.
So, are you thinking people with EDS have naturally lower CD57 scores? Meaning a misdiagnosis of Lyme or that we’re more prone to picking up bacterial infections/not being able to deal with them ourselves? Interesting either way!
MY LLMD explained to me that having a form of EDS means I am more likely to have IBS, which I do so put me on the FODMAP diet which is wroking quite well for me at the moment. She also explained that might mean I was more likely to suffer from Lyme disease than other ‘healthier’ people – what do you think?
Oh, also forgot to mention I had glandular fever too when I was 14/15 – lots of my Hashimoto’s friends have had it too. Might be of note.
Very excited to find this forum!
I have Hashimoto’s, Hypermobility (no real diagnosis, mentioned in passing by a NL, am super bendy also have hyper-reflexia), CCSVI without reflux but with reduction in flow both sides, severe vitamin D deficiency and the latest is possible chronic Lyme, mostly based on a clinical diagnosis – low CD57 and past history of a tick bite but no fevers/rashes/joint pain so I’m currently deciding if I want to start treatment.
About to start the FODMAP diet for IBS as well – I’m a barrell of fun!!
I’m so happy to be amongst ‘my kind’ here! I’ve been online for 3 years trying to figure it all out and I finally feel like I’m making some headway here.
CB. x
