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ourfullhouseParticipant
Just wanted to put out there that Arizona Doppler Specialist does excellent Doppler Sonograms using the Zamboni Protocol, to DX CCSVI, and it is less expensive than the Haake Protocol. Certainly not as thorough, but if you want a basic DX, this is an option.
I had my CCSVI DX by Eric Feigenbutz. To DX CCSVI takes special ultrasound training… you can’t just get it done at your local hospital, sadly.
Also, Arizona Doppler does go to other locations to do US’s… that is how I had mine done, in Seattle in Jan 2011 during an MS mini conference of sorts. So you can always check with them to see if they are going to be in any other locations.
ourfullhouseParticipantYes, saw it, and thank you! I have really, REALLY fought the acidity issue AND my potassium also went south about month 8 on Diamox. Could those RX potassium pills be any more huge? Ugh. Can’t wait to see part two of this! If there is something besides bicarb to help with this issue, that would be AWESOME! As it is, I am taking 12+ bicarb tablets a DAY and “only” two Diamox pills a day (one AM, one PM).
It was also good to hear someone say that when we sometimes think the Diamox is not working it probably isn’t the Diamox, it is the acidity. I have kind of gone round and round with this issue, trying different doses and then recently just stopped the Diamox altogether for about 6 days (trying to see how long it would take for my body to “notice” the Diamox wasn’t on board anymore, as far as symptoms, etc.). I was surprised I didn’t have a headache right away. But, on day 6 my world came crashing down and then I was BEHIND the problem(s) and my body was so ticked off and inflamed I had to go on prednisone for a few days. So, word to the wise, don’t go off it even if you don’t think it is helping!
ourfullhouseParticipantWhatsreallygoingon,
My symptoms started totally looking like MS about 3 years ago, with exacerbation’s 2-3 times a year that left me worse and weaker after each flare. Prednisone helped tremendiously. But, no lesions on MRI’s. I kept looking at MS and when the info about CCSVI was coming out, I read up and watched it for a while. Then, in 1/2011 Arizona Doppler was going to be in Seattle to do CCSVI screenings and my husband and I decided to get the imaging done, as none of my doctors were figuring anything out at the time. While waiting for my appt time, I had convinced myself this was a waste of time, that I couldn’t have CCSVI, etc. And yet, I had/have it, and not a borderline case, but pretty bad (met 4 of the 5 Zamboni Protocol criteria). Back then, it was thought that anyone with CCSVI had MS, by default. I think that view is changing, though I think untreated it will progress. Eventually people like you and I will/would probably have lesions. I had venoplasty last April and my reduced flow was severe in several veins. I went back again in July 2011 to have my ovarian vein blocked (trying to deal with heavy, heavy bleeding and from my first venography we knew that because of all my vein issues a lot of blood flow was going backwards through the ovarian vein to the uterus) and a stent put in the left iliac because of May-Thurners and my IR looked at my other veins while I was in there and all but one were exactly the same as they were before my first venoplasty just 3 months previously. I need stents, but my IR wants to wait till the dissolvable stents are available in the US (years away still). Since then I learned more on this site about how all these things (POTS, EDS, CCSVI, Mast cells, etc.) are interrelated.Some of my neurological symptoms are still better since having my CCSVI treated, but most of the symptoms that went away for the first 6 weeks after the first venoplasty, are back… and some, like the POTS, continue to get worse. I didn’t have any relief after the second venoplasty, except that my left leg has stopped swelling due to the stent placement. Looking back, the day before my procedure I had a severe flare up from getting too warm, so mast cells or cytokines were probably running rampant… not a good place to be when having this procedure, and I think that is why I noticed no changes. Also, my left juggler, which is/was 80% stenosed, has been painful off and on ever since that venoplasty. Not really sure what that means, but makes me think things are swollen and backed up.
ourfullhouseParticipantMy muscle biopsy was also to look for mito! And, was also negative. So many ups and downs in this journey.
My neuro wanted me to be seen at the Neuromuscular Disease Center in Saint Louis to try to figure out what my biopsy results “meant” and to maybe, MAYBE, get DX (but don’t get your hopes up on that… she said most people don’t get a DX, but they do learn more from going to see these specialist). Well, I live on the West Coast and that was just too far to go with so little possible outcome from the adventure and expense.
I still don’t know what it means or how it figures in with EDS/POTS/Masto/CCSVI.
ourfullhouseParticipantDear Whatsreallygoingon,
Curious, did you have a muscle biopsy that gave you the small fiber neuropathy DX? I had one about 18 months ago, in this journey of getting DX’ed. Mine was a surgical biopsy as they wanted a pretty large piece of leg muscle to test. My results were smallness of type 1 fibers and increase in internal nuclei. My neurologist also writes it up as “myopathy with central nuclei”. I also have abnormal EMG and nerve conduction studies.I haven’t seen anyone else on this forum mention having this DX or these kinds of testing and wondering if people just haven’t mentioned it, or haven’t had the kinds of symptoms we have had that led to this line of testing?
I rarely get the kinds of shocks you talk about, but have a friend who is just like us here (wish she would join in here!) and she gets the shocks very badly. She also has had a muscle biopsy (though a simple punch one) and the abnormal EMG/NCS.
I don’t know if that helps or not….;)
ourfullhouseParticipantI believe one copy of only one of the defective genes is inconclusive, because we just don’t have a way to know if that gene is switched on or off/ expressed in an individual or not. That is why having a compound result (two of one bad gene or one each of two bad genes) is considered having a stronger association with being unable to metabolize B6, B12 and Folic Acid. My naturopath would do the same as yours, MattiesMom, try the activated folate and if you feel better you know you need it without doing the test. Also, none of my children are autistic.
I have had the genetic testing and came back as “compound heterozygous” with one copy each of C677T and A1298C. Per the lab report “This genotype is predicted to be associated with a poor metabolizer phenotype characterized by increased plasma homocysteine levels. This individual is at increased risk for arteriosclerotic coronary disease and venous thrombosis as well as for toxicity from medications affecting folate metabolism.”
A person with the MTHFR gene defect need to take activated forms of the above vitamins. I was taking the Thorne 5MTHF and Thorne Methylguard (for the B6 & 12), but I need such a high level of folic acid that the cost was getting too much to buy the Thorne 5MTHF. Also, my husband has the gene defect, and the cost goes through the roof when you are both taking 30 mg of activated folate a day. So, we are now getting it RX for it (brand name is Deplin, but there is also a generic L-Methylfolate Calcium that is MUCH cheaper!) and saving a lot of money! 90 day mail order through our insurance, for 30 mg a day, is $30. So much less than the Thorne! We still are taking Thorne Methylguard, but my naturopath is getting us set up to do activated B12 injections at home soon.
Haven’t had our kids tested yet, and we need to, especially the girls, at least before they get married and have babies, as low folate is linked to neural tube defects, pregnancy complications/miscarriages and delivery complications (all of which I have had, except the neural tube, though on most of my 8 miscarriages we don’t know if something was wrong with the baby or not).
Hope that helps to hear from someone who has had the testing done.
ourfullhouseParticipantI just watched this… hysterical! 🙂
ourfullhouseParticipantTry this link instead and let me know if it works: http://www.amazon.com/Bicarbonate-tablets-relieve-heartburn-antacid/dp/B002CPDF9E/ref=sr_1_1?ie=UTF8&qid=1333816857&sr=8-1
I’m not a doctor, but I would think your reaction to the toothpaste brought on the headache you experienced/are experiencing. Just because Diamox takes care of CSF headaches doesn’t mean you can’t get a headache for a different reason. So, don’t be too quick to judge the Diamox or drop it is what I am thinking. You need to do what you need to do, of course.
Do you have an epi pen? Sounds like you NEED one!
Pain meds don’t do much for migraines, it is the nature of the beast. For me, the best I can hope for is that pain meds help me not care as much or help me relax a bit/sleep, etc. Have you ever tried a high dose of caffeine when having a migraine to see if that helps? I have caffeine pills on hand as that seems to the the thing in Excedrin that really helps me with a true migraine (when/if I get one, which I don’t very often anymore).
I have been reading up this morning on hypoadrenergic POTS, since it is mentioned here on the forum a lot. My POTS has never been classified one way or another, but I’m now thinking mine is also the hypo form, or the combo version of PD and Hypo. I found a great website and am learning a lot about how my body does/doesn’t cope and how even when we think things are working/stable, one can wake up one day and those things no longer work, so it is a constant figuring out (the author calls it decoding) of how to get back to more stable again. Let’s hope this link will work: https://sites.google.com/site/hyperadrenergicpots/Home
Now, I have been thinking/hoping that the Diamox is the “cure” for my POTS, but I am now seeing that several symptoms are still there, even though several are gone/better. I can definitely see the effects of the excess adrenalin still happening, and then the crash that follows the next day. I would guess there is still a matter of time and healing even while taking Diamox. And, then the next pieces of the puzzle with the cytokines that Dr. Diana has explained in Part 2 of her theory, that will hopefully help too.
I would be curious to know what all other people are here are taking to treat their POTS, besides Diamox? Is anyone taking an anti-depressant to control the re-uptake of norepinephrine, and if so, which one?
It means a lot to me to have somewhere to “go” with other people who share this same crazy combination of illness/syndromes/genetic defects/whatever you want to call it, lol. Family and friends, as much as they want to listen and be helpful, just don’t understand.
ourfullhouseParticipantMatties Mom,
Copy and paste the link I gave for the bicarb. I don’t know why, but none of the links here on the forum ever work for me either. I have to copy and paste them to open them. Must have something to do with how web links are set up in the programming, waaaaaay over my head. lol.Every 2 weeks to check your blood is good. So, if you could wait till you have been on Diamox 2 weeks, unless you start noticing more symptoms that make you think you are getting too acidic. It is best to stay on a set dose for the two weeks so that your body can adjust to it and that way you will get better information from your lab work when you get it done. If you are taking different amounts different days of the 2 weeks then you won’t really know why your labs are what they are.. make sense?
When I first started I was taking one tablet with each Diamox I took, just to have a place to start and see how I did. 🙂
ourfullhouseParticipantI agree with you, Bee. And, love your “dream”. =)
ourfullhouseParticipantBee,
So sorry you are going through such a hard time! Argh! I too get strange reactions to many meds, not anaphylaxis reactions, but cannot tolerate type of reactions. When I have to go into the hospital and give them a paper list of the ones they CANNOT give me (and I leave off most of the failed meds that I don’t think they would be giving me anyway!) they look at me like I’m crazy. **sigh** I think the weirdest one for me and hardest to explain, or maybe it is to get medical people to understand, is that I cannot have IV Benedryl, as it makes me pass out. I can take it orally, no problem. But put it in an IV (usually because I’m reacting to some pain med they have tried… I react to almost all that are used in hospitals) and I’m gone. I had a similar experience with being on a Beta Blocker (only a few days of that!), one of the misguided attempts by my cardiologist to help my POTS (before I found prettyill and Diamox!).I know this is probably way too simple, but have you had your potassium levels checked? When mine is low (and the Diamox seems to be making mine low, rats) I get terrible lower leg pains similar to what you are describing and tachycardia. Just wondering if somehow your chemistry has gotten off kilter, maybe from this reaction to this medication, etc. Probably already been looked at, but just in case it hasn’t seems like an easy thing to check and easy to treat. =)
ourfullhouseParticipantI was thinking about how my ECHO improved since having CCSVI treatment and being on Diamox and it got me thinking about how at my eye appt things were improved also. My vision is a little beter and the astigmatism I had in both eyes is now gone. ??? Can that happen from a reduction in pressure in my head,eyes, vascular system? Dr. Diana?
My pressures went down also, but I expected that from being on the Diamox. =) I figure that can only be a good thing, since my grandmother had glaucoma and my dad has low pressure glaucoma (that took part of his visual field before they were able to DX it).
My doctor noted drusen in both eyes but said that it is a common finding in patients with EDS, so he wouldn’t worry about it. If I didn’t have EDS he would be concerned about macular degeneration. Then I read Dr. Driscoll’s EDS Eye Dr. appt handout and it states that EDS’ers maybe more prone to macular degeneration. So, now I’m confused.
So, some things improved, but now I have drusen. Hmm.
ourfullhouseParticipantBee,
My doctor is starting to think is might have to do with having an inability (genetic?)to absorb fat soluble vitamins. I’m low in all of those (esp. K) and can barely keep in the middle of the normal range of D on 10,000 IU of D3 (I use Thorne Research D3) for years now! I think there is some kind of test he is thinking of running to check for this, but I don’t know what it is yet.I have come back with other genetic mutations that make me unable to absorb other vitamins (I have the folic acid/Vit B6 and B12 gene defect, so I have to take activated forms of these vitamins) so I guess this wouldn’t surprise me. Makes me wonder, if this is all genetic, if it is somehow linked to the EDS, since it is genetic. ???
ourfullhouseParticipantMegan,
I also had worse and more headaches while on Florineff! When my POTS was at its worst and my doctor kept increasing my Florineff, I went from 10 headaches/migraines a month, to 25 a month! The Florineff seemed to help the tachycardia and dizziness, but at what a cost!Switching to Diamox made a HUGE difference, though I was very nervous that I would have a lot of tachycardia and dizziness while my body adjusted (and I really did NOT want to end up in the ER yet again with my POTS). Dr. Diana was so sweet to hold my cyber hand through it, encouraging me to hang in there and give the Diamox a chance, that even some increased symptoms at first would go away, etc. And, she was right! It is rare I get a headache anymore and if I do I take an extra Diamox and it goes away in less than an hour. Before, nothing would get rid of the headaches I got before or while on Florineff (sometimes Excedrin would help, but not always and not completely)! My tachycardia/dizziness are so much improved! They only crop up if I get too acidic, and I have had to learn and work with that issue, but I think I finally have it nailed down. It is amazing for me to be able to bend down now and do some gardening and then stand up without falling over/passing out, etc.!
Diamox really can make a huge difference, so give it a fair trial, even if some symptoms crop up the first few days or so. Give your body time to adjust to the new normal. It can take some time to find the right dose too, so be aware of that. And, also be aware that there are some meds that interfere with and/or are bad in combination with Diamox (such as aspirin, lisinopril, etc. Be sure to read up on it!), which can cause you to have problems if you aren’t aware some meds don’t “mix”.
Lastly, be sure to get regular blood work done to watch how your body adjusts to Diamox as it is KNOWN to make people too acidic (which is why I take bicarb when I take Diamox). I found that being too acidic started to mimic POTS symptoms, but once I got the PH balanced, the symptoms went away. Now, if I start to notice some tachycardia I pop some extra bicarb tablets right away. =)
ourfullhouseParticipantMattiesMom,
That is very interesting what you wrote there at about hormones. My Dr.(a naturopath) has tested my hormones again and again (24 hour urine tests, pricy!) and they are always whacky and he keeps having me try bioidentical compounded hormones in different combination and amounts (they are in a cream) and they never do anything!Then I found some great info about perimenopause on http://www.cemcor.ubc.ca/ and my symptoms sure match up with low progesterone/high estrogen. My doctor agreed to let me try the medroxyprogesterone at the dose recommended for women with migraines, which is a HIGH dose and take it every day, not just the 2 weeks a month. Anyway, tried it and it did help with some things (finally relief from breast pain and swelling!) but I bled for a month straight. This is what happens when I have tried birth control pills a couple of years ago too. Something is very broken in my hormones because the amount of medroxyprogesterone I was on was more than enough to SHUT off the ovaries and menstruation, and yet it didn’t with me.
It just seems every time we try to do something with my hormones it never works out. I would be so very happy if that piece of this, if it is the vagal nerve, etc. would be worked out and get fixed in those of us that have this “endocrinology gone wild” problem.
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