June 18, 2011 at 11:25 am #40bearcatParticipant
… the ‘driscoll theory’… really just wanting to say: how v v v exciting!!!!
I wasnt able to see the “attached article” on youtube- so havent got a v good grasp of your theory- but a lot of points you raised in the vid did hit home-a.o. not least having been ‘cyclothemic’ since childhood… “adrenergetic’ oddness – once my adrenalin levels are raised they seem to dissipate v slowly so I can be utterly exhausted yet relaxing, never mind sleeping is v v hard… ‘body panic attacks’- mind utterly calm, no external stimulus and yet my body can go into ‘fight or flight mode…and yes for a shorty (5’1”) I do have rather a big hat size ; ))))
I dont know if it’s related- but I did also have a ‘funny experience’ with ppi’s- they are the ‘wonder cure’ for what I felt were ‘gastric migraines’ (one sided evil headaches with evil nausea which was much worse when trying to move, which could at times be lessened when I was able to make myself burp… oh the oddness ; ))))) ) which utterly baffled my gp-
only problem… I cant take them all the time- after 2-3 weeks of 15mg/day… I get a v odd ‘diaphragm’ pain- which otherwise I never have…
I’m currently awaiting autonomic dysfunction tests- though to me it’s clear I have struggled with this for decades and the prof said initial bp/pulse rate checks (sitting/standing/lying) do “strongly indicate POTS”- and the wait is 8+months… which now… : ) … I consider a good thing as by then hopefully your theory and study might have filtered through and therefore other checks/tests done too
for me though hormonal changes also seem to play a big part in what my EDS/autonomic dysfunction gets up to- as a little kid I had the usual ‘non crawler/late walker/utter klutz/”lazy” due to fatigue and I guess pain- then pretty ‘normal’ from 7-11- then as a teenager I had many full on faints until I got blood pressure raising meds- then actually I was ‘all round’ fine for decades- then in my mid/late 30’s (and I suspect the start of my perimenopause) slowly but surely ‘all hell’ broke loose- first oddness was I suddenly was always cold- then an ache here then there-then a bout of evil ‘out of the blue’ depression (which felt v chemical- as as soon as I was on meds the problems disappeared within a few weeks/I stopped meds after some 2 months-against the advice of my gp-but never had depression ever again)- then doing normal things started to hurt all the time- then 24/7 all over chronic pain- some 5 years of pretty bad chronic fatigue- ‘insane’ pmt problems (I really felt like an utter lunatic and often was unusually for me v aggressive- for 3 days to 2 weeks in a month)-
and since being in full menopause for a couple of years- I feel mentally balanced/on an even keel, I have lower pain levels, more energy- all round feel at 52 like I didnt even dare dream about at 40 ; )
with v many thanks and how great you now have a site with forum!!!
xxgJune 24, 2011 at 6:39 am #1244
I can so relate to your notes about hormone involvement. I have poly cystic ovary syndrome with my EDS and type II diabetes. When I finally got the EDS diagnosis my Drs. agree to a hysterectomy that I had requested 3 or 4 years earlier. The day after the surgery I felt better than I had in years. I have not had another migraine since and I was a frequent flyer in my local ER. It’s been about 7 yrs since and I have had a bad 6 mos, but still am better at 52 than I was at 20 yrs.. though when I do get bad I go down quicker and stay down longer. My endocrine issues continue to plague me..but I’m on it! This site will make that adventure much easier!June 24, 2011 at 7:37 pm #1248
Thank you, you are so kind. I can relate to SO MUCH of what you say!!!!!! Wow!
OK, you MUST look at the theory because it sounds like your instincts are right — hyperadrenergic POTS, and it SURE sounds like you have mast cell involvement. It’s looking more and more like the two go hand in hand.
In our family (yes, no one escaped this – except my husband. ha), treating the mast cells and taking off a bit of pressure on our brains has made a HUGE difference — and we’re not even on the prescription mast cell medicine yet (still taking lots of the over the counter Zantac and Zyrtec – ASK YOUR DOCTOR FIRST). But you may want to take a copy of the theory with you. Until I make it easier to find on the site you can get it by going to this URL:
http://bit.ly/moYbIB In Part 2, I tie all of the conditions together.
I’m so glad you’re here. PLEASE keep us posted as to how you are doing. Personally, I’ve been through it ALL, to the point I didn’t think I’d have ANY ability to think the next day. I also tried to explain to the Mayo researchers about how the bipolar presentation/suicide ideation would turn on and off like a light switch, and that it HAD to be a change in brain chemistry. It seemed to fall on deaf ears.
Oh, I had to stop my periods for a while (a couple of years) because I was SO sick during that time. I assume the change in hormones caused vasodilation — our enemy!
Big hug, 🙂June 24, 2011 at 7:43 pm #1249
Hormones – can’t live with them, can’t live without them. ha. I hate to sound like a broken record (boy, THAT shows my age!), but in my theory I talk about how we may have a low level of pressure on our brains that may contribute to our “endocrinology gone wild” 🙂
Will you take a peek and see if that could be you? If so, just taking off a bit of pressure can do wonders. In fact, my periods stopped — I assumed menopause, it was about that time –but when I started on Diamox, my periods CAME BACK. Mixed blessing, but my point is that the pressure may affect a lot of hormones! Not just the “female” ones. Believe me, my husband is thrilled to see he no longer has to wonder which of his wives will greet him at the door – Diana or her mean twin BIPOLAR Diana. ha.:)June 24, 2011 at 8:59 pm #1254
Your theory on “Endrocrines gone wild” is why I’m here I was on a research binge and found some of your info. I have it printed out in triplicate for my specialist who is a rheumatologist who encourages me to bring in information for she and her staff. If anyone will help me go forward on this it will be her. I don’t think we will be able to take Diomax due to sulfa allergies. I am checking with our pharmacist for any counter indications and crossover problems with Zantac/Zyrtex and my diabetic meds. I have a med mix at the moment that is good for me..but if I have a flare not much helps and I am totally incapacitated for awhile. I began taking phentermine a couple years ago based on a study I read out of mayo clinic. My pain levels were off the charts and I was reacting to everything. The idea was that it might work as a central nervous system analgesic for some people. READERS NOTE THIS IS A DANGEROUS DRUG >>DON”T READ THIS AND THINK TO TRY SOME. It is a controlled drug and can be addictive for some people. I did not have any of the heart issues and blood pressure problems that are not good with the drug so I was able to try it. It has been good for me, but I won’t even let my son consider it. It is also one of those drugs that can cause serotonin overload. I think it somehow helps me with the “lowering of pressure” you speak of. The difference with and without it for my POTS and fatigue is amazing. It would be great to go off a med like that if Zantac can help.
FYI I have requested my son’s head measurements from my doc. Crossing my fingers that they have themJune 25, 2011 at 6:02 am #1257bearcatParticipant
Hi everyone : )
sorry I havent had time/head to do more reading… but I sure will asap : )
re hormones- one of our UK specialists prof howard a. bird (now retired) has written some articles on hormones and hypermobility- cause in his decades of running a ctd clinic he found he was able to ‘predict/tell’ when a patient had gynaecological problems- often before their gynae’s could and that bendy peops who took ‘progesterone rich’ pills could indeed find that they subluxed/dislocated much more frequently after being on it
so he found that progesterone seems to make ligaments laxer, oestrogen tightens it- so quite an important thing to consider re contraception
but also explains why we (and normal women too btw… there is a study on female athletes) so often just before/during (?? sorry foggy head) our periods are more accident/injury prone- progesterone levels are higher at that time
if however you have a gynae condition that is treated with progesterone… you are caught between a rock and a hard place : (
mom- phentermine? had to google that and it seems to be an appetite suppressor that can even be bought online ? and nope, no worries I wont buy it ; ) but would you have a link to that mayo study that suggested the use of it for pain? just out of curiosity… as said my chronic pain levels really have lessened a lot
the “mild hydrocephalus not being so benign and poss prevalent in EDSers with pots” theory could to my mind also explain why we c t disordered peops seem to have such ‘sensitive’ body systems overall- i.e. we seem to often have major reactions to/symptoms from minor ‘imbalances’-
diana- is that a possibility?
re diamox- I will wait till I’m seen at the autonomic clinic again and ask them about it- my gp, in one way luckily, lets me take the lead on treatment options- but I’d prefer some doc input first
oh diana- this layperson is baffled by the seeming ‘paradox’ of taking ppi=lessen acidity in stomach/digestive tract and diamox=raises blood acidity levels ?
could you please explain this to me or point me somewhere?
: ) xxgJune 25, 2011 at 9:11 am #1260
Bearcat..I will take a look for the study. Thanks for understanding why I feel the need to post those statements about being cautious about using meds. I always worry about someone being desperate and sick of Drs. and reading something like my post and making themselves worse. It’s the “middle school teacher’ in me.lol
I have lived the progesterone/estrogen conundrum. At this point I’ve had a hysterectomy and find I am better off with no hormonal support. It’s always a trade off. My androgens are high due to Polycystic Ovary Syndrome POS, but those symptoms are preferable to me than others. For younger women in the throws of PMS issues getting good support from an EDS knowlegible doc is crucial.
I too suspect that “my brain” is always a little waterlogged lol and so a little onslaught becomes a big cascade.
FYI I am meeting with a group of EDSers today in Mid Michigan.We are starting a group. I will direct people to this site.
I am having the worst time spelling and typing this week..and I can’t get spell check to work in my posts..so sorry!!!!June 26, 2011 at 9:57 pm #1269
Hi Momcat7 (do you have 7 kids?) 🙂 The Zyrtec is the HUGE help, the Zantac is secondary in the help department. Please ask your doctor about substituting Neptazane (Methazolamide) for Diamox. I believe that will work for you, but PLEASE CHECK. You have a doc who ENCOURAGES you to bring info? Holy-smoking-cow is that doctor a keeper! And THANK YOU for trying to get those head circumferences for me. Smooch!June 26, 2011 at 10:07 pm #1271
Hi Bearcat, Please take a copy of the theory with you to your autonomic docs, but I can tell you that they will laugh OUT LOUD when you mention Diamox. It goes against everything we’ve done to treat POTS in the past. We had always tried to increase our blood volume, and Diamox is a mild diuretic (not the major reason we use it — we use it to reduce the production of CSF which we can’t drain), but in the short run, it won’t help OI (orthostatic intolerance). The idea is to take the pressure off of the brain, allow it to float again, and reduce the pressure on the brainstem from the overly full cerebromedullary cisterns. We are hitting the source of the POTS, not the symptoms, with the hope that we can eliminate the POTS. But the treatment for mast cell disease is also a critical component for most of us. Some doctors even believe that ALL POTS is secondary to mast cell disease. I think it is a bit more complicated than that, but it is a component, certainly. Finally, the Diamox is a carbonic anhydrase inhibitor and as such, it will cause some acidity (think of it as a side effect). If you are too acidic (CO2 levels below 22), it stops working. So taking a PPI to reduce acidity only helps us. With mast cell disease we also tend to have WAY too much stomach acid, so the PPI (and/or Zantac) is doubly important. Does that make more sense? Thanks!June 26, 2011 at 10:12 pm #1272
Hi Momcat7, We’ll look forward to meeting your new friends! I liked your description — your brain seemed “water-logged”. A lot of patients describe Diamox as their “brain drain”. How true. And we can’t get oxygenated, fresh, good stuff into our brains if we can’t get the old, crummy, garbage loaded junk out! 🙂June 29, 2011 at 1:52 am #1274
Because of my sensitivities to meds. I went back through my notes and looked at meds I have tolerated well. I have used Promethazine for migraines and nausea and several times when my stomach just went on strike…and I could not keep food down.(.Usually due to a reaction and then the cycle is hard to break.) I am drowsy if I take a mid size dose, but feel very rested if I do sleep and have absolutely no brain fog afterwards. I know that promethazine does not block the release of h1 but I think it interferes? Is it possible that this med could work like zrytec? I really would like to stick to something that I have used well. The inactive ingredients can be as big a risk for me as active..
I always thought the lack of brain fog and stomach issues after this med was just my body breathing a sigh of relief after a 3 day vomiting and migraine episode. I now wonder if I was actually experiencing my brain in a more normal state due to the meds. I also notice that I can handle the heat better and my sugar levels are more stable. I did check for cross reactions with my meds and there isn’t a problem. I have a current rx for Promethazine for nausea, but would not start using it daily without checking in with my Dr. I want to have good info before I pitch my case to him.. lol Thanks again for the opportunity to brainstorm.June 29, 2011 at 2:38 pm #1276
I’m happy to see the search function works on the forum!
Yes! Promethazine is great, and some people prefer it to Zantac. Sounds good!
🙂July 18, 2011 at 11:40 am #1316BethParticipant
Hi Dr. Diana,
I have been lurking around after ‘accidentally’ finding your theory a few weeks ago. I must say, it makes a whole lot of sense and I am trying to figure out how much of it actually applies to my daughter. If you don’t mind, I have a few questions for you. I figure our situation is probably fairly common and if you can answer my questions, it may help others as well.
Anyway, a bit of background: My daughter is 12, diagnosed with HEDS in March (I have known since May of 2010 that it was EDS). She started getting very bad last summer, debilitating joint pain, and fatigue; POTS symptoms[tachycardia when standing up or even sitting up some days, dizziness, near faints, nausea, extreme fatigue, tightness in chest] started in August.
By January, her headache (which had been constant for more than a year at that point) was worsening and other symptoms were becoming debilitating – dizziness, lightheadedness, nausea, blurred vision, serious sensitivity to light and sound. I suspected Chiari and/ or cranial instability – an MRI showed no Chiari but I think there is definitely low lying/ crowded tonsils and the brain stem is a slight angle. Most concerning is the fact that when she turns her head, the vision in her opposite eye blurs (i.e. when she turns her head to the left, her right eye blurs and vice versa). Dr. Tinkle feels this is down to cranial instability constricting the arteries and we are waiting to get some scans done – insurance nightmare.
She has spent most of her time since February in a darkened bedroom due to the severe headache and sensitivity to light and sound. Her nausea is worsening – she is starting to lose weight and there are days I have to force her to eat. Her quality of life is ridiculous right now. I had resigned myself to the fact that she was going to need cervical fusion and that it might not even relieve her symptoms – and then I found your theory. I still think she has cervical instability and might need a fusion, but now I believe there could be other pieces to this puzzle…
So, here are a couple questions:
1) Is it possible to have a low level of high pressure with a normal eye pressure reading? She had severe pain in her left eye this winter – ended up at an opthamologist and he said there was no sign of high pressure. (This was right before she starting getting so bad in February)If LP’s are contraindicated, how would one measure pressure?
2) Her brain MRI doesn’t show any obvious enlargement of the subarachnoid space (not obvious to me, anyway). But her hind brain is definitely crowed and doesn’t look like it is floating correctly. My understanding is that CSF blockage will cause many of the symptoms she has. If there are not high levels of pressure, Diamox probably wouldn’t help? Or is it a matter of trying it, assuming I can find a dr willing to prescribe it, and seeing if it helps? She has previously tried a tapering dose of steriods (helped a tiny bit) and dihydroergertomine (awful, made her headache worse)- the local neurologist concluded it isn’t migraines and told us to find someone at Children’s who could help us. We see the Headache Clinic at Cincinnati Children’s in August and I am wanting to bring up Diamox with them.
3) Regarding Mast Cell Disease: Depending on which list of symptoms I look at, she does have several – but so many of the symptoms overlap with EDS, POTS and cranial instability that it is hard to know which is which (and I know that is exactly why your theory makes so much sense!). I am not 100% convinced she has Mast Cell Disease but am not 100% convinced she doesn’t. Is it possible to have it mildly – or not in an obvious way? Could it be lurking and get worse as she gets older?
Ok, I have written too much already, so I will leave it there for now. I will just close by saying thank you for reading this and thanks for all the work you have done on the subject. I am hoping to get my daughter’s head measurements and send them to you – it really is a fascinating theory.
(I am attempting to attach one image of her MRI, hope it works!)July 21, 2011 at 1:09 pm #1320
Hi Beth, I’m so sorry that you and your daughter are going through this. One mom to another, it sucks. Now having said that, may I throw out a few thoughts for you to consider and chat with your doctors about?
First, the ocular (eye) pressure has nothing to do with the intracranial pressure. So you can relax there.
Two, I agree about your daughter’s subarachnoid space EXCEPT in the space above her cerebellum (do you see that space above the hind brain?). That area makes me wonder if it could be trapped with fluid, pushing down her cerebellum and adding to the crowding of her brain stem area. CERTAINLY before any invasive procedure, I can’t believe there would be a doctor out there who wouldn’t be willing to try Diamox. If it lifted that area of her brain and took out some of the fluid in the cisterns around her brain stem, she may be home free, or drastically improved. It does worry me about the changing vision when she moves her head. I was to the point, though, that I felt like I was passing out when I moved my head (although I wasn’t). It was horrible. I could tell an immediate difference with Diamox, but it took weeks to months to get the full benefit. Things just continued to improve.
Finally the mast cell stuff – again, the beginning treatment is fairly benign — especially compared to Chiari surgery, neck fusion, etc. Again, two days of double dose Zyrtec/Zantac (ask your doctor first) started to turn us around (my son and I). Two weeks — even better. Two months – even better. We are now going to start the Gastrocrom (by prescription). If you go to http://mastocytosis.ca/ and look at the “Patient Experience” letter, it will explain how treatment even without testing is working well for so many of us. It appears that the tests for it are very lacking (and too stringent). That will change.
So that’s my personal 2 cents. My son and I were headed for neck fusions and brain shunts, but I knew they were missing something. We were both triggered by a virus, so I knew it couldn’t all be anatomical.
If you get some relief with medical management, great. If not, then surgery will always be an option. I just like to think of it as a LAST option… I hope this helps some.
Big hug,July 21, 2011 at 4:54 pm #1324BethParticipant
Thanks so much for your thoughts! We will be going to the headache clinic at Cincinnati Children’s Hospital in August and I so appreciate your help before we go. I have a number of things that I can mention to them now.
I wondered about that one spot on the MRI… Thanks for helping me feel less crazy! I will take her MRI images with us and politely request/demand that the neurologist actually look at them. So far,to my knowledge, no doctor has actually laid eyes on the MRI images – just the radiologist who I seriously doubt has a clue about the finer details of any of these things but said her brain is ‘normal’. So, I hope we have a neurologist who is willing to listen and work with us. I have hope because our experiences at Cincinnati Children’s have been very good thus far.
When I read your theory, a lot of things fell in place and certainly gave me a lot to think about. I immediately had hope that we could maybe avoid surgery. I mean, if she needs surgery and there is no other option, fine. But, if we can do something to totally avoid or at least put off surgery, that would be amazing! At this point, I would just be happy with something that could give her even temporary relief from the headache.
I agree that trying Diamox seems like a pretty benign option – certainly compared to fusion surgery! I think *hope* that we can get someone to let us try it. If they are going to try her on topimax or something, why not give Diamox a try? Honestly, I am just relieved that we are finally to a place where they are working to help her and not ignore her pain.
I will take a look at that link to the mast cell info. From what I have seen, you are so right about the testing and knowledge about mast cell testing – seems like it could be much more of a problem and much more common than tests show. I will mention zyrtec or zantac as options – again, what can it hurt?
Thanks again for your 2 cents – you are so helpful and kind. Hope you and yours are well!
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