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ourfullhouseParticipant
Hi Barb,
What is the name of the test you had for Mitochondrial Function?Thanks!
November 25, 2013 at 10:43 pm in reply to: hiGH B12 ANYONE? HYPERADRENERGIC POTS Dr. Diana pls help I am newbie #4627ourfullhouseParticipantAnd please don’t forget that B12 should be given in the muscle, not “subQ”. (Yes, I made that mistake for a while! ๐
Dr. Diana, can you explain why B12 should be in the muscle instead of subQ? I have been having mine subQ for a couple of years no! **sigh**
Sure, it’s because that’s what they said we need to do! ๐ I’m sure we could Google for the scientific reason, and when things slow down, I’ll look it up! Meanwhile, just understand that it needs to be in the muscle. I’m just glad to know I wasn’t the only one! ๐
Dr. Diana,
I checked with my naturopath and he is unaware of any scientific information as to muscle absorption of B12 being much different than subQ and so would greatly appreciate if you have a study, paper, etc. to back that up that he can look at. His inquiry into the subject showed that B12 is absorbed just fine subQ and IM is so much more painful that it would have to be a significant enough difference to make IM worthwhile. :ohh:November 20, 2013 at 4:59 pm in reply to: hiGH B12 ANYONE? HYPERADRENERGIC POTS Dr. Diana pls help I am newbie #4613ourfullhouseParticipantAnd please don’t forget that B12 should be given in the muscle, not “subQ”. (Yes, I made that mistake for a while! ๐
Dr. Diana, can you explain why B12 should be in the muscle instead of subQ? I have been having mine subQ for a couple of years no! **sigh** That is how my ND said to do them. :shut:
Hate the thought that it could have been doing more good/made me feel better if it was injected into the muscle all this time! Boo.
ourfullhouseParticipantTest was yesterday and I “failed” with flying colors! Heart rate went up by 45 bpm over supine. Barely made it to the 10 min mark so that they could do the second blood draw for catacholemine levels. BP started to nose dive and I was about to pass out, but since they had all the data they needed they lowered the table before I passed out (nice of them, eh?). So, yes I have POTS and have a vasovagel component too. Dr. starting me on midodrine. I know some people get really bad headaches from it. Wondering if others in this community have had that problem? I’m hoping being on Diamox will continue to keep them mostly away.
So, going off most of my meds was enough to at least get enough of a response for the TTT. Not sure about the catacholemine levels yet. Now, I am still paying the price from being off the meds, feeling cruddy, back of my head killing me (haven’t started the midodrine yet), etc.
One interesting thing I have discovered is that I take a compounded capsule of Ketotifen and Cromolyn and I wasn’t sure if it was doing anything for me or not? Well, going off it I was getting what I thought were hot flashes, but when I go back on the Ket/Crom they go away, so it isn’t hormonal after all, it is mast cell flushing! Good to know!
July 4, 2013 at 4:37 pm in reply to: New Here, daughter with EDS/Chiari/High pressure/CRPS/Mito #3864ourfullhouseParticipantIV fluids (multiple bags) are the only way to get out of a bad POTS attack for me, but they do give me a huge headache! Slow drip IV’s don’t give me a headache, but it has to be really slow. Florinef put me over the edge too. Also, like you Dr. Diana, what worked last year isn’t the same as what is working now and it is ever changing. Some things work well for a time, then randomly stop working. That seems to be common with hyper POTS.
June 28, 2013 at 3:07 pm in reply to: New Here, daughter with EDS/Chiari/High pressure/CRPS/Mito #3835ourfullhouseParticipantSo sorry to hear all that you and your daughter are going through. I don’t have any answers, but can share what I have found from being on Diamox.
First, CO2 being low is caused by Diamox, but is easily treated with bicarb tablets (I buy them on Amazon). Potassium citrate is for low potassium, which can also happen while on Diamox (it has for me) but as far as I know and have experienced, potassium citrate does not improve the acidity showing us as the low CO2. I have to take bicarb to keep my CO2 in range. Potassium level is a separate test. With both you have to play around with the amount one takes and then run labs to see how much one needs to get in the normal range.
Hope this helps some!
ourfullhouseParticipantWhere is the video? ๐
ourfullhouseParticipantI found that compounding pharmacies can get/make Ketotifen capsules in the US. I live in Oregon and get them locally. And, it is much cheaper than the name brand RX being sold in Canada or England. I got 90 2mg capsules for $67!
The oral version of Cromolyn is called Gastrocrom and is available in the US by that name. It is very expensive though! And, a pain to take (in my opinion, on an empty stomach 4 times a day!).
Hope this helps you!
October 5, 2012 at 5:48 pm in reply to: Can you help us with this symptoms review (easy checklist!) #3004ourfullhouseParticipantI mailed my symptoms checklist last week to the address on the contact page (copy and pasted below)and it was returned in my snail mail today as “undeliverable as addressed and unable to forward”. I have it addressed exactly as it is below. What is up? HELP! I’ve posted on other boards to snail mail it to this address too. Yikes!
Contact Dr. Diana Driscoll
Mail:
1834 Keller Parkway, Ste 400
Keller, TX 76248ourfullhouseParticipantI am moved to tears reading your post. I am so sorry you are going through this. I don’t get those kinds of cognitive problems very often, and I hate it when I do, that you are living with all the time. Often enough that I can empathize with you.
And I want you to know that your life is of value! And, I know what it is like to go through doctor after doctor who doesn’t understand or doesn’t find anything wrong (what the heck?). There are so many times I would like to/should have gone to the ER, but I just can’t bear trying to explain “me” to them anymore. I know I’m preaching to the choir here.
I just noticed in your “signature” that you have had TMJ surgery. I think you are the first EDS person I’ve seen have that issue, though supposedly should be common as other joint issues. I had a bilateral sagital split in conjunction with 3 years of braces (not to straighten my teeth, but because of the ever increasing overbite), meaning they broke my jaw down the middle and slid it out 8 mm, back to where it should be. My condials are 1/3+ worn away and the pad/disk? in each joint was displaced. Surgeon was able to put them back in place, though one had a hole in it. He stitched it and put it back in. He thought that would be better than foreign material that my body could reject. Wired shut for 8 weeks to heal, etc. Not sure what all your TMJ surgery entailed? I’m happy to be able to chew again, though I still have to be careful. Sadly the area around the joint never stops hurting, I think because of the scar tissue and muscles around the joint having problems. How is yours doing?
Hang in there.
ourfullhouseParticipantPosted the info on the CCSVI Seattle and CCSVI Oregon Facebook pages. ๐
ourfullhouseParticipantZonisamide and Gabapentin made my hyperadrenergic POTS worse! Also, Florineff made it worse and gave me migraines like 20 days out of 30. Awful! What has helped is Diamox. Migraines are almost completely gone, dizziness and fainting are gone and palpatations and tachycardia are less. Still working on getting those gone too. I started on Welbutrin last week as it helps a lot with hyper POTS. So far I at least am starting to feel better and have more energy, but sleep has gotten worse (which is a side effect during the first few weeks).
If I didn’t live on the west coast I would sign up to get an appt with Dr. Francomano even if it took a year or more. You are so blessed to live where there are great doctors not too far away!
ourfullhouseParticipantOh, I totally understand about moving and the “start over” fears! Once you find doctors who understand/validate and are willing to learn (about the Driscoll Theory for instance) it would be very hard to start over. And, I also know all about driving 3 hours for specialist. I have been doing the drive to Seattle 4 times in about a year, first to get CCSVI diagnosed, then had CCSVI treated, then went back another time to get stents and coils placed for venous issues (related to CCSVI/bad, incorrect flow), then had to go up there to have bile duct surgery (they don’t do it here in the Portland area, go figure!). We usually spend one night too, and always the appts are EARLY. What is with that? ๐
Speaking of your doc’s at home, did you get the cytokine testing done and have you gotten results?
Sorry to hear about your husbands job. That is sure stressful for you both, even without sick kids. Lots of decisions to sort through. My husband got laid off 11 years ago (they closed the doors at the semiconductor he worked at -no warning/total shock) and was without a job for 10 months. Hard stuff to live through, but we made it. Whew!
Hang in there!
ourfullhouseParticipantI haven’t heard anything good about the OHSU genetics dept with EDS either. Only have had one friend who went through them, all her doctors are at OHSU, and it was not a helpful experience. She has the Marfan’s look and they ruled that out only based on an ECHO, which maybe is good enough.
Anyway, it is good to know that Shriner’s seems to be doing a good job. Will have to keep that in mind in case we ever get to the point we need a genetic appt or other specialist for my kids.
When you come to Portland do you do it all in one day and drive home again? That is a LONG day! I know you don’t know me, and maybe you have other contacts in the Portland area, but maybe we could meet for coffee or something if you stay longer than the one day. ๐
ourfullhouseParticipantJust curious, has Stryder had an ECHO and/or lung testing? I just interviewed a new pedi. for my kids yesterday and in talking about EDS and my 17 y.o. with the Marfan’s “look”, including Pectus excavatum, and she said for any kid with Pectus excavatum they always do an ECHO and lung testing. Well, news to me, cause our current, going to be OLD pedi’s never cared. Argh.
Are you seeing or going to be seen by a geneticist at OHSU? (I think you are the ones in Oregon, right?)
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