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ourfullhouseParticipant
Dr. Diana,
Are you saying that it works for the diarrhea also? I don’t get constipated, even on pain meds, but suffer daily with the diarrhea. Sometimes I get a break from it and am just “normal” for a couple of days before going back to the diarrhea again. I have also noticed that the worse my hyper POTS symptoms are, the worse the diarrhea is.Also, my twin 12 y.o.’s suffer from chronic constipation, but not much belly pain with it. We have tried dietary changes without any change, tested for celiac/wheat intolerance, they are fine, etc. They go days without going and then get tears and blood when they go, etc. Doctor keeps saying just keep giving them laxatives (Miralax) but this has been going on for 4+ years. I tried increasing vit C and it just gave them diarrhea. So wondering if they would be candidates or not? (They are unoffically HEDS, based on me having HEDS. They have as many or more signs as I do.)
ourfullhouseParticipantThanks for all the valuable input everyone! Today I go to interview a potential new pediatrician for the kids. Praying this doctor will be able/want to work with us. My doctor keeps reminding me that working with us folks with rare diseases/genetic disorders/etc. takes more work and time and that is why “most” doc’s just brush us off.
Give My Daughter The Shot,
I know what you mean! I too struggle with what has been lost, trying to find help and my personal concoction for my issues and trying to get help for my kids, on top of just the struggle of everyday life (cooking, grocery shopping, etc.). It is a hard road, but not without times of joy and meaning. Hang in there, one day at a time. :coolsmile:June 7, 2012 at 9:22 am in reply to: The paperback version of The Driscoll Theory is available!! #2354ourfullhouseParticipantI’m sure it is a software or such glitch. An editor is supposed to catch those kinds of mistakes. And I wondered like you, about Dr. D getting corrected copies printed.
Hope your appt goes well Omega. Today I go interview a new pediatrician for my kids. Trying to find someone who knows something about EDS (to start with) and will be brave enough/able to order their own tests, labs, etc. without sending us to a specialist every time something comes up. Our current pedi says “go see a geneticist or specialist” because she doesn’t know anything about EDS and doesn’t want to learn. **sigh** :shut:
ourfullhouseParticipantThank you Maffin for your response! I was thinking with as many physical features they would at least want to do an ECHO to be sure, so your response reassures me.
I am trying to find a new pediatrician that is actually knowledgeable about EDS, and/or is willing to study up and learn to be our doctor. Got a call back from one that says she knows about EDS and willing to meet with me/us and find out what type we have and research anything she needs to. That was encouraging. I have a “meet the doctor” appt with her on Thursday. Our current pedi just looks at me blankly when I mention EDS and that EDS effects ______(fill in the blank). It is either the blank look or she just wants to send us to a specialist. My experience with specialist’s is that they don’t know much about EDS either. Have had two gastro doctors with NO knowledge whatsoever of EDS and these were older doc’s. I have a hard time wrapping my head around the apparent fact that I am the first EDS patient they have ever seen? Or is it that they just don’t care/don’t listen? When you are putting your body in someone else’s care in a surgical setting and you try and try to make them understand you are a bleeder/poor wound healer/pain meds don’t work, etc. and then they tell you later that there were bleeding issues, etc. while scratching their heads, you realize they weren’t listening to you at all. :shut:
I know, I’m preaching to the choir. Finding good doctors for us special folks is just so HARD. Or, at least it is here on the west coast.:roll:
ourfullhouseParticipantDr. D,
Like I mentioned, Zyrtec makes me a zombie, really. Brain fog is worse, fatigue is worse and I get this brain “numbness” kind of feeling. I cannot function on it at all. Gave it 2+ weeks and it only got worse the longer I was on it, with no noticeable trade off of reduction of any of my other symptoms. To say that it gives me a sedative effect is putting it mildly. lol.One thing I will share is that I too have had a battle for pain relief options because most narcotics (all the ones in the direct family of morphine, vicodin, percocet and also tramadol) make me severely itchy. Not a tiny itch, a “I’m going to scratch my skin down to the bone” itchiness”. This is compounded by the fact that when this happens in a hospital setting they always want to give me benedryl, which when given to me via IV, makes me faint (I think I have figured out that is lowers my BP immediately for some reason. I can take it oral with no such reaction). For a while I was using Duladid, but after a year on it, I also started getting itchy and nauseous from it. **sigh**
Then, my neurologist tried me on all sorts of meds (Trileptal, Savella, Zonisamide, etc.) and I reacted badly to all of those. She then went to “old school” pain meds, and had me try Talwin Nx (Pentazocine and Naloxone) and it was a God send! It works really well for me, no itching and I can function/non drowsy when I take it. This is all great for at home use, but in a hospital setting, they don’t use this drug…ever. With as many surgeries as I have had it is crazy trying to get pain relief that does anything for me. Last one they tried Demerol, but it is so short lasting and they wouldn’t budge the hospital’s standard dosing for me, even though they could see I was in extreme pain. ARGH. So, I now try the Duladid with a non Benedryl antihistamine and some for the nausea (though a lot of times it takes oral nausea meds and a seasickness patch) and that is better than the Demerol.
All that to say has anyone else ever tried Talwin for pain?
ourfullhouseParticipantDear Dr. Diana and friends,
Hydroxyzine is the antihistamine Dr. Theo recommends for MS because it crosses the BBB unlike Zyrtec which is similar but formulated so it would NOT cross the BBB.
SweetFeather,
So Dr. Theo recommends this for MS (Multiple Sclerosis), not for Mast Cell stabilizing? I’m getting confused.My doctor said Zyrtec does cross the BBB, and I for one cannot take it… it makes me a zombie, and that is why he said it crosses the BBB. I take Loratadine (Claritin)instead with no side effects, but am unsure of the Loratadine does anything/enough for mast cell stabilizing.
Thanks!
ourfullhouseParticipantSweetfeather, can you also share what, if any other, symptoms are helped by taking Atarax? You mention sleep improved, and ADD symptoms. Are you also saying it helps your brain fog?
I am wondering where this might fit in with treatment plan for those of us with EDS, Hyper POTS, CCSVI, MCAS, etc. I’m on Diamox, and it helps, but not getting complete relief from my hyper POTS and headaches/neckaches are still popping up. (I do fight acidity and had another blood draw to check on that today, so we will see where that is at)
Thanks!
May 31, 2012 at 5:35 pm in reply to: The paperback version of The Driscoll Theory is available!! #2271ourfullhouseParticipantMy book arrived and I have been reading through it and noticed that the index page references (at least the ones I have looked at, I haven’t checked them all) don’t match up to the pages in the book. For instance, I looked up Marfan’s and none of the 3 page references had any mention of Marfan’s on them. I also looked up papilledema, Epstein-Barr Virus, estrogen, hyperadrenergic, hyperadrenergic POTS, TMJ, Beighton scale, etc and none of the page numbers listed in the Index match up. For instance for Beighton scale, page 128 is listed and page 128 is BLANK.
So, either I’m going crazy or something is wrong. And since my brain doesn’t work so well most days, maybe it is me. But I have reread and reread these pages and can’t find the words that are supposed to be on them from the Index list.
Anyone else notice this? Dr. Diana…?
ourfullhouseParticipantIn POTS patients raising arms also increases our tachycardia, and tachycardia can make you fatigued for sure! Do you have POTS and/or have you noticed your heart rate increasing when your arms are up?
May 25, 2012 at 10:59 am in reply to: The paperback version of The Driscoll Theory is available!! #2213ourfullhouseParticipantJust put in my order on Amazon for the book! :cheese:
ourfullhouseParticipantThis is happening with CCSVI research and treatment right now too. The FDA got involved (prompted by big pharma perhaps???) and sent out a “warning” of the dangers and how some of the studies, such as the Hubbard IRB, had to be shut down. So sad. The backlash is that now insurance companies won’t pay for the procedure for anyone with an MS DX, and possibly others as this goes on. Oh, they’ll pay to do the same procedure on arteries, but veins are no mans land. ARGH!
I have a good friend who was scheduled to have his 2nd CCSVI procedure (over a year since his first… more of a tune up) last week, who has MS and this FDA thing happened and his insurance suddenly wouldn’t pay for it, so it was cancelled. So frustrating!
All that to say naysayers are going to continue to make waves and we have to just keep plugging away at the research and PROVE them wrong. 😉
ourfullhouseParticipantFrom what I remember and what I just read I don’t think that is exactly right. Here is a Q & A I found:
” Acetazolamide mechanism of action.?
Does anyone know the mechanism of diuresis caused by acetazolamide? I know it is a carbonic anhydrase inhibitor but how does this cause H+ retention and bicarbonate excretion?Reply
The reaction of carbonic acid (H2CO3) to water and CO2 is catalized by carbonic anhydrase, but it’s inhibited by acetazolamide, which leaves carbonic acid which is unstable and becomes hydrogen ion (H+) and bicarbonate ion (HCO3). The H+ gets reabsorbed by the renal tubules and the bicarb is excreted in the urine.”I believe because Diamox/Acetazolamide causes bicarb to be excreted in the urine is why bicarb is the base/buffer we are recommended to use.
ourfullhouseParticipantI haven’t heard of using calcium carbonate instead of bicarb, so I don’t think it is the same. The only thing I have heard is that taking calcium citrate can help reduce the tendency to form kidney stones (because of the Diamox and bicarb).
ourfullhouseParticipantI am taking 125 mg of diamox twice a day and taking 12-14 650 mg bicarb tablets a day. I just got labs back today that finally have my C02 in the normal range! First time in MONTHS! For some of us, it takes a LOT of bicarb to buffer the acidity from the diamox apparently.
I couldn’t handle being on propranolol… made me pass out. Just found out I actually do have hyper POTS, so different group of meds to treat that than “garden variety” POTS.
Hope that helps!
ourfullhouseParticipantSweetfeather,
Thanks for posting that link.I had totally forgotten that one of my boys had a strange tooth. His left central incisor baby tooth came out, then, a small tooth came in, and fell out, and yet another tooth emerged. This one looked like a normal incisor but with several of these tiny, baby sized teeth attached to it. Very odd. Some of those extra parts broke off and our dentist used composite to fill in and around the front of the tooth to make it look normal. He had braces on it and everything. So far, so good. If and when the composite fails/breaks, he will need a crown.
Out of 13 children, he is the only one, so far, to have this strange tooth. He is also one of the ones with the worst EDS and POTS symptoms. ALL and I mean ALL, have had (most two phases due to needing to stretch that darn small palate or from cross bites) or will have braces due to small, high palate, severe crowding, jaw problems, etc. I myself had braces as a kid and then as an adult (done wrong as a kid for what my problem was) in conjunction with jaw surgery/TMJ repair, because my TMJ issues were so severe (half the condial was already worn away and I could barely chew). I knew all that went with EDS, but didn’t know about the “peg” type tooth.
I also have had an issue with roots starting to dissolve on molars. I thought I read somewhere this was part of EDS also.
If it isn’t one thing, it’s a hundred. 😉
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