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Interesting about cortisone. I could never get the benefit of inhaled steroids (nose or lung). They would help a little, then I would plateau and by day 9,10 or 11, I was sick with an infection. IV steroids made me a mad lady once…. And very ill… which caused them to be stopped. So let’s just say I do all I can to avoids steroids. 🙂
I did want to say something about candida. About 9 months after being treated for Mast Cell issues I started in with a nasty nasal passage problem. It’s gross but I need to describe it because everyone thinks it is just a runny nose. I had a drip that was like super glue….. Not kidding. It would harden painfully. And the nasal tissue was inflammed….I could feel the blood pulsing through the skin. Sometimes my nose was so sensitive, any touch to my nose would make me wince (or ‘yip’ like a dog in pain). My allergists tried to tell me it was allergies. Duh…had them all my life and they were NEVER like this. It wasn’t humidity, histamines, etc. it ruled that out by changing the environment or with meds. Saline washes did not work either.
Well, it is now gone and do you know what did it (this us directed towards you Diana). Berberine and heavy duty probiotics. I began to see that mega dosing pro-biotics before bed helped my nise somewhat. So that is when I treated myself with berberine. Within a few weeks it was all gone. PRAISE THE LORD!!!!!! I just could not stand my nose anymore!
I truly believe that I had a fungal issue. I also saw a skin issue clear up as well as the common candida issue we women have.
So that is it. Berberine…. besides having anti-fungal properties….. does wonderful things in the gut. It has been researched and is as effective as metformin…..and that’s just one thing. It is really nice for gap junctions.
But please do work with your MD and ALWAYS consider your other meds ….. and always buy quality. Consumer labs usually is a good source for recommendations on the quality of supplements .January 25, 2014 at 10:47 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #4798
Thank you for sharing your knowledge. Your list are very clear and helpful.
Tired right now. By neurosurgeon says he does not see the stenosis but rather he sees a hypo plastic artery…which may be congenital . I need to confirm that is exactly what he said by what he summarizes in his report. He also wanted to consult with the radiologist who hasn’t the time to produce a report. So it is definitely into the neuro-opth because this neuro-surgeon thinks eye droop is a local issue. So that is good news but as it was with the vascular neuro, I won’t have the final interpretation for a few days. I will bring imaging back to the vascular neuro for review and possibly make an appt with the neuro-opth.
He recommended boric acid for my D. but she coukdn’t stand the river if fluid it created. It seemed to jump start the process thoughJanuary 16, 2014 at 2:06 am in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #4748
Thanks for posting this Barbara.
Yes, the probiotics do work. An senior GYN (so I was surprised) told both my daughter and myself to not only swallow probiotics but also take a probiotic capsule apart, add some water and place it in the vagjna (sorry folks , TMI) . It works for both of us. It feels nice to be in control of something.
It might have been me …I have had a good run with LDN and your description sounds like me. the Berkson protocol is high levels of alpha lopoic acid (IV) and from what I have read, it is given to patients with incurable cancers or people who did not want to take the chemo. Alpha lopoic is just plain good for the body …especially the liver…but Im not sure what I found expect it to do for Ehlers-Danlos .
What state would you be flying from? There are prescribing MDs for LDN in other places.
I need to frame this properly and tell you that I have never had the extreme problem you are having. However, I did suffer from head pressure with some being behind my eyes. I have tinnitus. And I went in to develop an occipital headache that would really stop me from doing anything. I’ve hale POTS jntermittently but not the extremes that some people have. Anyway, I used Petadolex (German brand name for Butterbur…it was the type used in studies). I went on it for 4 months and then tapered…mainly because the studies did not run longer than 4 months and because some studies noted some ‘staying’ power of relief. It worked very well for me and got things to calm down. The society for neurologists (exact name eludes me) recommends it as a top evidence based choice for migraines. So just thought I would mention it. I have mast cell activation and my theory is that it crossed the brain barrier and treated my brain like an HI/stabilizer (that part is totally my on theory and not science based).
Also, im a little concerned about my daughter and looking for any insight anywhere. We see the MD/ neurosurgeon tomorrow at Tufts (actually today …it is 1:16 am right now). My daughter just saw Rordorf out of MGH. (Vascular neurologist). He was very nice. It seems the radiologist (fellow) signed off on the U/S he ordered and said it was fine. Subsequently, Rordorf looked at the images himself and said it wasn’t …noting an ICA stenosis. We have since moved to a pediatric neurosurgeon (daughter is 22 years) who is EDS friendly and connected to Francomano & Henderson. Has anyone seen Rordorf in Boston before? I’m afraid I’m making a wrong move by taking her to another neuro when Rordorf sees stenosis. The original complaint was a droopy eyelid…and then the stenosis was found. The neurosurgeon will run an MRA and MRI. But at the neurosurgeon, they will use Gadovist which is the safest (most stable) gadolinium contrast (so it is used in pediatrics) whereas at MGH uses Ablavar which is fairly new and gives the best picture of arteries (but no long term safety studies and the studies are 68% of white older men). My thought is that a big picture EDS evaluation should be the starting Pinot…I’m assuming the Tufts neurosurgeon at least has a clue about the cerebral nuances of EDS.
You all are pretty experienced with this sort of testing. Am I making a mistake by having the testing done at the pediatric hospital with the neurosurgeon and NOT the vascular neurologist ?
Sorry I don’t mean to de-rail the thread. I can be PM’d.
Oh Wow! imagine all the phthalates you all get to avoid! Do your kids thank you daily for making there lives a little more phthalate free?? 🙂
I thought that could be done…. but no one ever said I could. I substituted 2 Quercetin for two doses of cromolyn (Q. shown to wirk differently and has more ‘staying’ power) and then down to one on the cromolyn w/2 Quercetin.
How long did it take for one to know… for sure… that the Cromolyncan be dropped? I’m figuring that since it took a while to work up to a certain level and for it to work that it may take a while to stop working.
How much ketotifen do you take?
And yes, I understand everyone is individual and that only my MD and I can decide what is best for my individual situation. (Just wanted to save you some typing…:-)September 5, 2013 at 4:19 pm in reply to: Has anyone tried LDN and became a tighter or more together EDSr? #4290
PT: Jessica Rossman, DPT, CSCS, LMT
Allen Sports & SpineCare
1111 Raintree Circle, Suite 150
Allen, TX 75013
Thanks sixboots (although I’m not happy to be edging closer to one more Dx).
Okay, here’s the million dollar question: if anticholinergics can cause IC or bladder issues, why the heck isn’t there a concern when we are on them or more surveillance? I really think the ketotifen is causing this. I’ve cut back on it and it has gotten better. I’m thinking of dropping it altogether.
And BTW, it really isn’t good for one’s brain either ….
So you didn’t have pain like the other’s in this thread talk about. I feel the same as you: urgency and some cramping. It waxes and wanes. I’m not formerly dx’d with anything that explains that but, as always, Im interested in your trials. Let me know if I can help.
88 mcg tiroscint
5000 mcg methylcobalamin
5000 IU Vit D
-turmeric extract or just ground turmeric/Never use NSAIDs
– 2 mg valium for spasms (which diminished a/ feverfew so I hardly take it)
I don’t think there is much in there is much affecting the brain pharmaceutically except possibly the ketotifen and LDN. Feverfew, Butterbur, B12 & rhodiola affect the brain.
Adding an edit : I won’t go without my feverfew or Butterbur … I did once and my headache came back within hours of going without. This was before feverfew and LDN. It was also after being in the MCAS meds for a year.September 4, 2013 at 3:29 pm in reply to: Has anyone tried LDN and became a tighter or more together EDSr? #4266
Diana, I thought I posted to you but I guess I didn’t press the send button. 🙄
I felt the same way for the longest time. I had cancer 20 years ago. if it were to appear in my bones (most likely place), I would like to know that, asap, so I could have the most time or get the best results through treatment. Also, the long term effects could put me at risk for subsequent cancers. This is why I avoided pain meds. It paid off because I get the full impact of LDN. However, chronic and acute pain can change the body metabolically when it goes unaddressed. So the pain can evolve to something else, chemically, in one’s body. An example would be that an acute pain didn’t stay locally but felt like it was ‘frying’ my brain or the chronic pain that was originating on one side would be duplicated on the other side during PT treatment. (Very weird… happen several times and required treatment of both sides even though one side was asymptomatic. I’m just summarizing here what can happen with sustained or chronic pain and not really explaining how. I learned in hindsight, there was a cost for not having earlier intervention. I don’t think I would have done it differently because it was not due to my lack of asking for help. It is a reflection of the usual issues we have with providers. The only thing I would have done differently was to fly to NM to see the only person I knew prescribing LDN…. or get a referral from him. In my I spire Journal, I posted twice about LDN in April 2011. So when an MD showed up locally and a few EDSrs had good results…and I had been dx’d with MCAS since then…. well, it was time.
So what I can recommend to you is that not addressing the pain, in anyway, because you want to know where it comes from is an assumption. not addressing it runs the risk if it evolving and becoming an entity in itself (physiologically). Does all pain do this? No. But it is riskier in chronic pain and unaddressed acute pain. So all I am sayi g is ‘be careful’ a d as a scientist, know your assumptions! :-))
LDN is being shown to heal the intestinal wall in the Crohn’s patient…. I’m hoping for a positive effect, with regards to that, on my mast cell activation. I do feel it has affected my gut (PM me for details as it us TMI) and my sense of taste (spicey food is not so spicey anymore… Receptors for capsacium are similar to opioid receptors). Yes, it has been used with those who have auto-immune & cancer dx’s so time will tell with that. It has had a pretty instant positive affect on me with regards to sleep but that is not the usual from what I hear. It also has reduced the pressure in my head and a low level occipital headache I had after a trial of butterbur (low level because I took feverfew instead of going back in the Butterbur ).
You know me from Inspire :-). We can communicate or talk by phone if you want more info
Diana, if we are successfully being treated for a headache how do I still fill out the symptom form? Without treatment or exactly how I feel now.