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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).
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. 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.
Yes, yes yes! Diamox doesn’t cure POTS, but it is where we need to start. Otherwise, we are just bailing in a leaky boat! YES! Epi pen! And a mast cell stabilizer (Cromolyn sodium). I take a wee bit of Cymbalta for hyperadrenergic POTS, and since us hyeradrenergic POTS folks spit out SO much nor-epi, lots of magnesium citrate is a MUST! Mine was SOOO bad, that I had to get on Xanax, but don’t need as much now. That is very difficult to get off of, but my doc was shocked when I was able to go DOWN on the dose. And YES! The next step coming up will help us even more! We may not be able to get rid of EDS and we may have to grapple with some POTS, but if we can just get it down to a nuisance, I for one, will be thrilled with that! Our kids have SO much hope now, especially if we watch their head circumferences from a young age. My son, as many of you know was at death’s door for three years. He was too ill to even be tutored. Now he is rarely symptomatic, and it is life changing for everyone. My daughter swore her POTS was gone forever, until we took her off of the meds to show the doctor her blood work and tilt table. Whoa. Yup — the meds were taking such good control of it that she didn’t even notice it! (Ahh, youth!). They seem to bounce back so quickly. What’s that in the air? HOPE, my friends. For all of us! I just heard from a patient who was dumped in a nursing home. She is out of her wheelchair and getting her own apartment now AND A JOB! They had written her off. Such a great ending to an incredibly sad story. It gives me goose bumps…. 🙂
Dr. Diana, can you explain what the cymbalta and magnesium citrate are doing for your hyperadrenergic pots? Some of my wife’s docs have offered cymbalta over time as a med that might help her, but I never understood why it might (although I understand their reasoning may be different than yours/your doc’s). And, I can’t find mag citrate described as anything other than a laxative.
That’s very inspiring news about your children and the nursing home patient indeed!
Dr. Diana,
I have read that beta blockers can cause mast cells to degranulate, and I can just see that turning into a horrible cycle. My newer primary care doctor gave me one months worth of xanax while we trying to figure out what was going on (before I figured out myself that I had POTS and found a POTS cardiologist to confirm it). I made that xanax last a month and a half, but now that doctor won’t refill it. :/ My POTS cardiologist doesn’t prescribe xanax because he explained that it isn’t true anxiety… it’s a haywire autonomic thing. I was just using it to help when I have a freak out attack, and to help me sleep. I take Magnesium Citrate at night.
My friend, did your POTS doctor check to see if you have hyperadrenergic POTS? If so, we have HUGE levels of norepinephrine and xanax is a God-send for that. If someone stopped my xanax suddenly like that, I’d hang him by his toe-nails. Going off of xanax, if necessary, should be very gradual. Heavens. I’m so sorry… Great on the magnesium for so many reasons. If you do have high norepi, that drains us of magnesium. Low magnesium contributes to hydrocephalus… You see the vicious circle here? Beta-blockers can cause mast cell degranulation, but some folks do OK. For me, I FELT worse. I needed the higher heart rate to try to get blood up into my brain! And boy, howdy, can that stuff cause depression! It sneaks up on you. Scary. I’m not telling you what to take or not take, of course, but am telling you MY experiences on this. Did you see my lecture at ISNVD? I think vagus nerve compression is the cause of our fast heart rate (and lots of other stuff). Hang on, ’cause it’s about to get more interesting! 🙂 Diana
Dr. Diana, can you explain what the cymbalta and magnesium citrate are doing for your hyperadrenergic pots? Some of my wife’s docs have offered cymbalta over time as a med that might help her, but I never understood why it might (although I understand their reasoning may be different than yours/your doc’s). And, I can’t find mag citrate described as anything other than a laxative.
Oh, I’m so glad you asked. First — the magnesium citrate PILLS are what you need. It is a form of magnesium that helps us avoid kidney stones. You’re right — the liquid is a fairly powerful laxative. Now, cymbalta does a lot, but very basically, at the connection between your nerves (the synapse), norepi is released, reaches the other nerve and then is taken back up in pieces to be recycled. Cymbalta stops the reuptake (the recycling). Cool? It’s also a bit of a mood-lifter and pain killer. And it may wash windows, but don’t quote me. My need for it is diminishing, which is great because that stuff is PRICEY! I’m down to the lowest dose now… I don’t know if it is because of the other meds I’m on or if I can tolerate more nor-epi now, or what. (I’ve taken it for 8 years). But in my first 3 years, I was off the charts adrenergic, and it helped me immediately. I hope that helps… 🙂 Diana
I’m also a fellow potsie and have HyperPOTS with high bp’s EDS and MCAS – there is also an autoimmune component associated with me. Just wanted to chime in and say that I’ve found something that helps me with all of these things. Tramadol works on serotonin, dopamine, NMDA (glutamate’s) and NE (Norepinephrine) and opiate receptors that helps with pain. This along with a muscle relaxer called Bentyl – has been my best help to date. It has to be the combination of these things or it just doesn’t work as well. I’m trying to get my doc to let me try the Diomox -since I’m having some pretty bad edema issues and also have a cerebral tonsil drop – but, not enough to call it Chiari. What would a normal starting dose be and how would you start out taking it?
Issie
Hi Issie, Thank you for sharing that! As far as Diamox goes, here’s the skinny: http://www.youtube.com/watch?v=NwLpZYI_72g Big hug, Diana
Hummmmmm. For some reason the site you posted isn’t popping anything up for me. Would love to see it though.
Issie
Shall we try again? Fingers crossed! http://youtu.be/NwLpZYI_72g 🙂 Diana
I finally found it under your videos – not sure why the link didn’t work. Thank You for trying – any way. I do have another question. I have recently learned with genetic testing that I do have a sensitivity to sulfites and sulfur – do you know if any have reacted because of this problem? There are issues in the methylation pathways with mutations. I recently tried Lasix and it also is a sulfa base and didn’t feel well with it. And spironolactone was even worse. So, since there have been others helped with Diomox – that was the next thing I thought I wanted to try. I didn’t realize, until I saw your video, that it was also in this family. It seems that most diuretics are. How well does this work – when some of us with POTS seem to be dehydrated? My sodium levels seem to always be high which can be indicative of low blood volume. I’m not a salt loader either. Seems very odd and a paradox – to be low blood volume and also have bad edema. Doesn’t seem like that would even be possible. But, I guess with EDS veins – that may be the case.
Issie
Great questions, Issie,
I’m revising “The Driscoll Theory” just a bit, and when I can get that out, it should answer most of your questions. Diamox flies in the face of ‘conventional treatment’, which is just ONE reason researchers never dreamed we’d need it! All of my research STRONGLY indicates that most of us have some hydrocephalus, causing a release of inflammatory cytokines and besides causing hypoxia to the brain, it fans the fires of our crazy inflammation. In order to break the inflammatory cycle (and to immediately relieve that horrible base of the skull headache and neck ache that most of us have), Diamox works like a charm. Then, we move on to mast cell treatment to again bring the inflammatory cascade under control. I agree that we need more options (especially for those of us who absolutely can not tolerate sulpha drugs of any kind, we currently don’t have an alternative drug. Eeks. If you have symptoms of hydrocephalus, some (good) doctors will work with you to see if a sulpha reaction is indeed a problem for you, or if it is an “allergy” that you may have outgrown. Fortunately, most doctors report to me that the majority of patients can, indeed, do just fine on it, but PLEASE work carefully with your doctor, or an allergist (or a mast cell specialist) to see if you are able to tolerate it. We are not good “brain shunt” patients, as our hydrocephalus tends to be the “external communicating” variety, and shunts today only drain from the ventricles (excepting one from the cerebromedullary cistern, but it is a shunt with a VERY high complication rate, and patients don’t tend to do well with that shunt, either). We really need neurosurgeons to get on board with this problem, and improve our options. It’s a sloooooow process, to say the least. When hydrocephalus and mast cells are under control, however, we have a good chance of breaking this vicious cycle, and this returns our bodies to normal fluid dynamics (meaning we no longer have low blood volume). Basically, we are hitting the SOURCE of our POTS and dysautonomia, and NOT just treating the symptoms. When we treat this condition symptomatically, without addressing the CAUSE, well, you already know, we are kind of chasing our tails… Does that make more sense? Hon, you are certainly not alone in this conundrum. Big hug, DianaIt’s funny how we figure things out and usually from trial and error. One thing I figured out the hard way is my need for more NO (nitric oxide). A very expensive ER visit with what seemed to be a heart attack, turned out to be a probable Kounis Syndrome – where mast cells degranulate and attack the heart. What’s the treatment —nitroglycerin, massive antihistamines and IV’s. A night in the hospital and a really expensive bill – taught me not to have glutamate’s. Yes, I chewed a whole lot of sugar free gum and had a reaction to the aspartame in it. That is a glutamate.
I appreciate your explanation of the drainage systems with us. I have for years told my husband that it feels like there is too much pressure in my head and it needs to be squeezed to drain.
Since I live in Phoenix, AZ and my docs are the wonderful team at Mayo. I’m really trying to get them on board with your ideas and hopefully my neuro POTS doc will let me try this. I have not been successful with any of the traditional POTS meds I’ve tried so far. I’m awaiting a call back from him on my proposal for a trial with Diamox. I hope that the sulfur thing won’t be a problem. I really enjoy research and am on the search for answers for all of us. I think, if we all put our heads together, we will come up with some answers. My PCP doc (is not at Mayo) didn’t feel comfortable in RXing the diamox – since she had only used it for altitude issues with people. So, now the ball is in the court of my neuro. Hoping he will at least let me give it a try. I think, if I have success with it – there will be others that would benefit from me being the guinea pig.
IssieHi Issie, This is some great information — thank you for sharing it! so many of us end up in the emergency room with chest pain and are sent home. Were the doc at Mayo able to figure it out for you? I haven’t had much luck with the docs at Mayo, but if your PCP prescribes Diamox for altitude sickness, you wouldn’t need more than a couple of days worth to see if it helped. We are WAY past the guinea pig stage, Hon! As one doctor told me, it doesn’t even “deserve” a study. If patients have symptoms of hydrocephalus, prescribe Diamox. So. there you go! 🙂 Keep us posted? 🙂 Diana
Hi,
I’m on day 2 of Diamox. Even though the opthalmologist gave me the 250 dosage, having read some of your reports, I thought I’d start at 62.5 and work up. I took 3 such equal doses yesterday and I have to report the tingling but it wasn’t just in my fingers as the opthalmologist had said but it was my hands and lower arms, feet, at the back of my head between my ears and it felt like the inside of my spine, down to my waist!Today, after my second dose, the tingling in my fingers got worse. When I was 16, I was beat up at school and I reluctantly retaliated which made me so upset I started to sob uncontrollably, the outcome of this was that I went tingly all over and both hands went into a spasm that made them close up. I was told by my GP I had hyperventilated. Well, this more intense tingling I’m feeling now is like that, though my breathing is perfectly calm but three fingers on my right hand (middle – little finger) have closed up on 3 occasions for about 5 minutes this evening. Try as I might I cannot open them with the muscles, I have to hook them over my knee and slide my hand up my leg to open them.
I suppose the good news is that the use does come back within a relatively short time. Has anyone else experienced this ? Does anyone know if it is indicating a deficiency of anything ?
Many thanks in advance
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!Hi,
Okay, I took a week off the Diamox and the finger spasms didn’t recur, so I’m going to try again. I remembered I hadn’t had my banana that day (for the potassium) so that could have had something to do with it. The opthalmologist had recommend I have a banana EVERY day.I have to say, once I’d stopped taking Diamox, I did notice the tinnitus more, also the top of head (vertex) discomfort was there again on a morning, as was the pulsing sound and the throbbing image. So, I’ve got to give it a chance I just need to get the other aspects balanced.
As I say, I’m going to try again but only half of the original dose, so now I’ll be taking 31.25mg or thereabouts (very hard to cut the pills exact!), to see if I can tolerate this and get some improvement. I’m also going to REMEMBER MY BANANA and ALSO get my Potassium, CO2 and Calcium checked when my doc’s back off holiday. (Although I take Vit D and Calcium every day, so I doubt this will be out).
I wonder if the finger spasms are connected with taking Diamox in combination with one or more of the other deficiencies I’m suffering from (see the end of the list below)
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!It is really a special one. I like the way you have presented the information. Interesting post. Thanks for sharing.
Hello Dr Diana, it has been a while since I last posted on the EDS blog. I have been extremely ill. In addition to EDS, CCSVI, a brain lesion, I am battling chronic Lyme disease since early February. There were times that I was full time care and could not function at all. My brain was not as functional as that of a very young child;that is until my Dr. prescribed DIAMOX a month ago. The main side effect in my case has been a severe low back pain that resolved itself in my three weeks. Well worth the pain as my brain function is almost back to normal. I can think, understand what is being said and on my way to critical thinking very soon. The drug has helped a little with my memory but there is still quite a ways to go before that problem is solved.q I monitor my ph levels and found that I am very acidic most of the time so I use sodium bicarbonate, foods, and oxygen to go from acidic to alkaline. Overall,for me, DIAMOX is a miracle drug. I have to thank you for sharing your experience as my Dr. follows the work that you are doing and often refers me to your website.:)
Hi All!
Been quite a while since I posted – my daughter Emily is still doing well on the Diamox (500 mgs split over 3 doses during the day). Her autonomic dysfunction still comes and goes but is considerably better. Her headache is managed and her neurological symptoms are much improved, thank God!We did find that her acidity level was the key. When her headache returned after 4 months on the Diamox, we started her on baking soda capsules that I was filling for her. Eventually, we switched to baking soda tablets that I purchase from Walgreens. We monitored her CO2 levels and found she needs to be above 22 – below 23 means the headache is back. She takes 5 650 mg tablets a day and that seems to do the trick.
We did discover something important that I wanted to share, as it could be helpful to some of you in similar circumstances.
This spring, right as we were trying to get her acidity level under control, she had an appendectomy and has started having some troubling GI symptoms – symptoms of Gastroparesis. Slow motility, poor appetite, etc. The baking soda tablets seemed to work better all around than the capsules, so we just didn’t think much of it at the time.
Then, recently, we ran out of the tablets – it was the weekend and I couldn’t get to the pharmacy. So, I filled some of the capsules that we had left over for her to take until I could get the tablets.
Within an hour of taking the capsules, her headache returned and got progressively worse over the next 24 hours or so. I just couldn’t figure it out – I know the dosage is less precise in the capsules but not so much that it wouldn’t work at all. Needless to say, I got the tablets asap because she was miserable. Within the hour after taking the tablets, her headache was gone again.
We finally concluded that she wasn’t able to digest the gelatin capsule (at all? fully?) and so was not getting enough of the baking soda into her system. She clearly is able to digest and absorb the tablet.
So, the moral of the story is – if the Diamox isn’t working, you may not need to increase the dose. And if the baking soda capsules aren’t doing the trick, you might try the tablets or a different brand of capsules if there is a possibility that your absorption is poor (and that is the case for many EDSers). I don’t know exactly what it was about those capsules – she takes other meds in the form of capsules and they seem to work fine, but we will keep this problem in mind and monitor any meds that seem less than effective!
Hope that story may help someone – it was definitely enlightening for us!
Thanks!
I have been on this Acetazolamide medication which i bought here http://www.internationaldrugmart.com/acetazolamide.html since I was 27. They diagnosed me with what you call a fluid tumor on my brain, which causes to much pressure on my brain which then causes migraine headaches, really bad ones. I lived with them from the age of 17 until they did a spinal tap and found out I had to much pressure. I have been on this medication ever since. I am now 51 years old.
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