Forum Replies Created
-
AuthorPosts
-
BethParticipant
Hi all,
I had a thought re: Diamox. I almost feel like we are talking about 2 different medications – one group implies that it is pure poison and another says it is perfectly safe. Anyway, I did a bit of looking about online trying to understand this difference of opinion and found that it seems like a lot of people, who are on Diamox for a variety of conditions, are on large doses – 500, 1,000 or even 3,000 mgs.For these symptoms and this particular manifestation of high intracranial pressure, we are asking for a low dose – 125 mgs or even 75 mgs. I wonder if the doctors who have refused to let us try Diamox are assuming we want a giant dose? I am planning on trying to get my daughter in to our local neurologist for a ‘second opinion’ (I have posted in detail about our ‘adventures’ in previous posts) and plan on emphasizing the low dose concept if he actually gives me a chance to speak. I really think if I can get a doctor to just look at the info for 2 minutes, he will be on board. But emphasizing the low dose cannot hurt!
Just a thought that may help others in their quest to get answers and help regarding these horrible, debilitating symptoms.
BethParticipantHi Tracy and Jesslynn!
I am very interested in what you both have to share – but as a poster I have no administrative knowledge. I am sure Dr. D will be along and try to fix whatever bug is causing the problem. Being ill herself and so busy helping so many, it may take a bit of time before she pops in.In the meantime, do try to post your stories in segments (copy whatever you type so you don’t lose the whole post into cyberspace!).
Tracy, I just saw another one of your posts regarding diamox on the ednf forum that listed your symptoms. Gosh, you sound so much like my daughter! I replied to the other post you wrote, but when I saw you here again, I just had to comment. That constellation of symptoms seems so obvious to me, wish it were as obvious to the docs!
I believe that there will soon be a body of knowledge regarding elevated brain pressure causing neurological symptoms in EDS patients and a real treatment option. We just have to get the docs to see it!
Anyway, hope you both take another chance and post more! Welcome!
BethParticipantHi,
Just wanted to give a little update. Unfortunately, Dr. T won’t prescribe the Diamox and neither will our pediatrician. The pediatrician’s reason is that he can’t go against the neurologist. At least he answered my phone query honestly and didn’t make me pay the $25 co-op just to tell me no. We have 2 more doctors we can ask, 3 if you count the pain management doc who we see on the 14th. But I seriously doubt that the pain management doc can help since I doubt he will go against the other specialists at Cinci. If the 2 local docs both say no, I guess I will have to start making cold calls to any local doc I hear anything good about. We don’t have money to travel cross country to do this, we already are looking at paying completely out of pocket to find someone willing to help us and with all of the medical bills we already have, that is a hardship by itself.If I can just get the head circumference data into a doctor’s hands for 2 minutes, I believe I can convince him. But no one will even look at it. Frustrating is an understatement.
I definitely agree with Dr. Diana that if a doctor won’t listen, they can be fired. We will not go back to that neurologist. Ever. (Unless it is to gloat how Diamox helped, but probably not even then.) I am even considering finding a new pediatrician after this, although we have been satisfied with him for years. He is definitely on thin ice right now. The only thing saving him right now is that I know he is just covering his own butt as opposed to being truly hateful and nasty like the neurologist was.
I will also say that, although I strongly disagree with him on this matter, I think Dr. Tinkle is truly trying to protect his desperate, vulnerable patients from buying ‘snake oil’. So many of us are desperate and looking for a miracle. There are so few answers and even fewer miracles. I appreciate that he truly believes he is right, but, as humans, sometimes we can do the wrong thing for very right, good reasons. That there is a ‘good’ reason is no consolation when you are being harmed by that wrong action. And I think EDS patients could be harmed in droves if this theory isn’t even considered. I think we are going to have to prove him wrong, case by case, patient by patient. My dream is to take my daughter back to our next appointment with him and present him with a changed child, post Diamox. A child out of her wheelchair, able to do and benefit from therapy, headache free and enjoying life again. Sometimes, miracles really happen but we have to be open to them when they come our way.
Perhaps we should try to get the Diamox success stories written up as case studies by the supervising physicians? We have to get this info into the medical literature, somehow!
I probably won’t know if we have a chance with the last couple doctors on our list until next week. Will update when I know something.
Thanks for the support!
BethParticipantWell, we had a horrible appointment today – truly a ‘when you hear hoofbeats, look for a horse and not a zebra’ experience. The neurologist was not at all receptive to the theory. Pretty hostile, in fact.
She says Em has migraines, plain and simple (she is the only one who believes this so far, no one else we have seen does). She thinks the pain medication is making it worse so she wants to take her off the only pain meds she is on, which is Tylenol and Aleve. The headache was present long before she ever took medication and it is constant so I just don’t see it is a rebound headache. I just don’t see how she can claim it is caused by the meds. She is upping the amitriptyline to 62 mgs even though the pain clinic said they only wanted to go up to 40 mgs. Increasing dairy intake when my daughter is lactose intolerant. No caffeine. Get up and exercise even though the tachycardia makes her faint. And so on. Very little of it made sense at all, honestly. Seemed like a ‘one size fits all’ protocol.
She ignored everything we said and, frankly, made up things to fit her preconceived notion of what the problem is. I feel like she was going to see migraines no matter what I said. She was very dismissive of this “theory” [you have to say it in a condescending tone] because she has such a successful migraine protocol, tried and true, to offer us. I am sure it is successful for kids with migraines but she dismissed the concept of an EDS patient needing customized care entirely.
At one point the doctor made the statement that all she could do was give us her treatment recommendations but it was up to us to follow it. I think she figured out that there is little chance we were going to be compliant. As far as she is concerned, it will take a good 6 months to figure out Emily’s headaches. It will be rough, but we have to do it. Sigh. She won’t come out of her box long enough to see the zebra standing in front of her. All she sees is a horse.
I will contact Dr. Tinkle’s office tomorrow and see if he will let us try the Diamox and mast cell treatment. We will not do any of the neurologist’s recommendations until we hear from Dr. Tinkle. He orginally said not to allow anyone change Em’s medications so we will see what he has to say.
Needless to say I am extremely frustrated. Any suggestions?
BethParticipantHey Dr. Diana,
I am getting more and more hopeful thanks to your theory. I got my daughter’s measurements from the doctor(I emailed them to you, hopefully you got them!) and I got a growth chart and plotted them. It looks to me like she lines up perfectly with your theory. We go to the headache clinic next week and I am praying they will agree to try Diamox. I will be taking all the info I can to help guide them – a list of symptoms, your theory, the growth chart and measurements, and her MRI.By the way, I have been writing about your theory on my blog and I have had several hits by people searching for the Driscoll Theory. I am doing my best to get word of this to anybody who will listen!
Thanks!
BethParticipantThanks 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!
Beth
BethParticipantHi 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.
Beth
(I am attempting to attach one image of her MRI, hope it works!)
-
AuthorPosts