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September 3, 2013 at 11:19 pm in reply to: Has anyone tried LDN and became a tighter or more together EDSr? #4264EDS99Participant
No you can not use it with opioids because it is a opioid receptor antagonist. Its action on the o receptors stimulates endorphin levels and I believe opioid growth factor. PEA (supplement sold in Europe) can be used with opiods.
Be careful. From what I am reading long term opioid use or very low opioid dosing (I think) can make for more pain. Opioids are god for short term. Pople who use opioids would need to come off of them to get on LDN.
Are you from the Dallas area? My PT just started there. She is VERY good and knows EDS… She is a 3rd level certified dry “needler”, DPT, LMT, & CERT in conditioning.
EDS99ParticipantFeverfew is best migraine prevention. Butterbur (Petadolex) is proven for migraine headaches…. I believe that is listed in one of the links I posted (evidence based one). The Butterbur was a direct ‘hit’ to my occipital headaches. Feverfew extinguishes my painless migraine auras. I don’t take both at the same time.
EDS99ParticipantI’ve heard that on the p450 gene they only give two SNPs and 8 are done by several other companies because p450 can be influenced by various SNPs … which are more than the two. At the EDNF conference some asked about this sort if testing and the geneticist said there was a study where three companies were compared on the eval of the same case. In one are or the testing, two companies agreed and the third was wrong. The third was 23 & Me.
This is one of the things that bothers me about these companies. I think they are all competing for customers and it is easy to rope in subjects by promising ancestry, etc. I also have an issue with the lack if genetic adequate counseling. No one can do that correctly for $99.
EDS99ParticipantOh you used probably the alcohol extract. You must have used a lot because in the studies I was looking at, the alcohol suspension was shown not to be effective for migraines. I don’t doubt that it witked for you because these studies draw from a group’s outcome and nit an individuals. But perhaps the alcohol had something to do with feeling ill maybe? I can’t tolerate alcohol so this is why I say this.
EDS99ParticipantHow much did you use and what kind? How long did you use it for? I find it reduced my foot pain and spasms. While I would not describe myself as a nervous personality, I felt calmer…. more serene. It also allowed me to avoid going back on Butterbur full time. It did reduce my occipital headache to 10% it actually removed my migraine aura completely.
I take the Gaia (CO2 extract ) 2 x’s a day.
EDS99ParticipantDiana, I don’t have an X-ray of my bladder ( it’s a lung X-ray). When my GYN sent me for a pelvic ultrasound, both offices messed up and did not schedule with the same radiologist that I have had 20 YEARS of pelvic ultrasounds with and they assigned a tech. So I requested the MD and they said she was not there and gave someone else. So when I explained my symptoms (cramping) and my huge cancer risk and how the original MD always would do a complete check including bladder and kidneys, this mature MD said “Your MD did not say to check the bladder and they get upset if we find something ” …so she did not do it!!! @?/$@!!! Can any indication of IC be seen in an ultrasound ?
EDS99ParticipantShonda, I understand your point but my detailed explanation … The one that disappeared…. put his comment in a better context. He actually is thinking more in terms of nerve issues and I think neurogenic (sry, sr. moment.. i mispelled last time) testing will cover IC, nerve issues, and anything else that course cause urgency and cramping. He’s the first doc to go through EDS issues Francomano style. So he’s the best but until something else comes along. And he will listen and discuss to uncover what the issue is. Right now he asked me to make sure a fairly recent lumbar MRI shows no tethered cord (request for a re-review from the ortho). So he is doing it right. The statement was just out of context.
It always nice to know someone will come to my defense. I don’t know what I would do without the moral support of my fellow cyber EDrs!
EDS99ParticipantOkay, my post disappeared before my very eyes. Did I overrun a limit? I was almost done. I do think I have emerging IC. Doc want to run urogenic testing . I’ve got a history that I think is relevant which includes recent bi-apical lung scarring/fibrosis . I’ve already been treated for MCAS. I’ve got good records if you need it. Doc doesn’t think ‘I’ve got it cuz it needs to be more painful. is that true?
EDS99
EDS99ParticipantWhat about grant writing? Is there any of that being done or is desired?
August 21, 2012 at 5:32 pm in reply to: Did you see the new vid with a symptom list? Can you help me? #2788EDS99Participantokay, it’s driving me nuts. I can’t find where to send the questionnaire (contact pages has specific emails which do not “qualify” for a questionnaire and I did not see it on the form).
So please tell me what the exact email address is to send the questionaire to. I’ve got it ready to go.
July 13, 2012 at 2:35 pm in reply to: The paperback version of The Driscoll Theory is available!! #2584EDS99ParticipantYes, I just tried to purchase it… and reference it. What is going on? It has 2 used ones listed for $999.000 . I don’t see it listed in the store on PrettyIll.com. I don’t even see the theory part II listed on Amazon….. do I smell trouble????? I hope everything is okay.
June 29, 2012 at 1:47 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2494EDS99ParticipantHi,
Intermittently. Since being treated for MCAS it is less frequent. I can’t say it is the worst thing, but perhaps I’m so used to having issues everything gets compared to total down time rather than what it is like to feel well. It is sort of like I don’t know what it is like to feel normal so is it THAT bad?
With that said, when I get this, I feel sick to my stomach. Sometimes I have a mild feeling of hesitantcy in swallowing (not choking but more of not having the normal, unconscious way of swallowing). I get cold/hot feelings in my arms with occasional numbness….usually after sleeping on the latter. I found that a collar worn while sleeping helps when it is at its worst… but otherwise I find it hot and uncomfortable.
Coukd anyone tell me the following:
1) I hv an MRI on order f the cervical region. The doc says it is my choice to get an upright or a supine one. Which should I get and why? Supporting documentation welcomed.
2) where can I get a very minimal neck support.. My foam one it hit.
3) does anyone know of a EDS knowledgeable neurologist in the Boston area or New England?
Thanks ahead of time
(PS: I am having the darndest time of logging in here from my notification link in my email. Who is the direct contact for web issues?)
June 21, 2012 at 10:57 am in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2466EDS99ParticipantI hv occipital headaches which have been present for only the last year and a half. It comes and goes but is much less frequent once I started on mast cell treatment. (I was ‘lucky’ to qualify for an appy with a GI mastcell specialist … Only had to wait 3 weeks). I usually don’t have it radiating more than a couple inches below the head.
I wanted to add that for many years I have needed to avoid added msg… particularly if there was any alcohol with it OR some sort of dirivative. It was easy to figure out because the symptoms would be immediate. It would start with a sizzling in the occipital area and tehn a headache in the same place Once in a while it progressed to`being unable to breath unconsciously…like “auto-pilot” was turned off. I would manually need to move my ribs so air would go in and out of my lungs. the lattr happened with Egg Foo Yong (which has a touch of alcohol in it (eve should be bued off). I thought I was safe eating steamed buns but I realized that since it is made with yeast, a fermentation process can occur.
I mention this because it is located exactly where I get the occipital headacheds these days. I know this thread is older… just thought I’d put it out there in case it had any “valie” Dr. Diana.
EDS99ParticipantGlad to hear the Sperti is working for you. I was wondering
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