Forum Replies Created
March 30, 2013 at 1:10 pm in reply to: philidelphia collars vs Philadelphia Patriot One-Piece Cervical collar for summer? #3581
Barbara has helped me too with buying my rigid collar, i would second that the soft collars in the days didnt help that much, especially when going for a walk or being in the car.
I spray mine with a mild anti back and wash it as often as i can, i doubt my collar will last long using harsh chemicals on it all the time but my collar smells otherwise lol!!February 9, 2013 at 3:03 pm in reply to: MRI pictures of my head, Chiari and hydrocephalus? #3418
I have a very similar MRI as the one shown here,nothing you would call “obvious” i am going to ask my neurologist if he could please do a standing MRI next time. Can anyone tell me when having an MRI, do you have to stand upright and still for say half an hour? I know you have to keep so still with these things, but that would be as tough as a tilt table test.I have taken a look at the chiari institute video, and its interesting how they say the drop is almost meaningless at times.
Not at all,
I appreciate the time you are giving explaining this.
The more i have read up on this at the weekend, the more i think this is whats going on with me. Especially now you have mentioned Chiari 0. I was surprised when they said i didnt have any signs of it because i had so many features, the whole reason they sent me to an ENT Dr before a nuero was because head and eye movement was the first and most prominant part to my problmes. I was house bound at that point as just couldnt move my eyes and head around!!They gave me some vestibular exercises which even my nuero said not to do, thank goodness, they would have made things worse with CCI! Obviuosly if they cant find inner ear trouble, obviOUs Chiair, it goes on to migraine. Theres you answer be happy with it!
Thats incredible about how Nueros were recruited from PSychiatrists here, quite funny as Amitriptyline was the very first drug they put me on around 6 years ago when they couldt find a thing wrong with me (missing the pots and eds totally) I am still on it to this day but have got it down to 10mg a day so it doesnt interfer with the pots. I dont really know if it helps any of my pain conditions anymore, i am a bit scared to totally come off it incase it was doing something.
I can imagine some of the reactions that you got from Drs just asking for your scans to study…… What was there reation when you told them all the thnigs they had spotted?
My collar should be here this week so i am very keen to see the out come!!
Thank you again for the explinantions of what could possibly be happening with me.
Thank you for your detailed reply.
You certainly do sound a pretty switched on person to be able to look at your own x-rays and scans and try to make some sense of it all when Drs here cant always help past a certain point.Not an easy task!!!
It is complicated stuff, but i have been reading up on CCI,and more so on Chiari now that i am bot so sure it has been “ruled out” totally correctly. I had a look a my MRI scans from last year and they were correct in that it isnt full blown chiari (or a 5mm drop) but to me it does look like mild herniation, although i am not an expert, from other images on the internet of people who suffer with milder disformations of Chiari mine doesnt look too dissimilar.
The main biggy for me though is the difference sleeping upright, and with a collar on. My rigid collar still hasnt arrived but i found one of those pump up ones in the cupboard and gave it a go lol. You can actually adjust the height it stretches your neck quite well but the only thing is becuase its sort of plasticy it can make you hot and sticky which is bit uncomfotable. I have worn it two nights like that now and with the diamox of course and i have managed no headaches for two days. This is unbelievable for me, slight neck ache when being in the car but it did go. SO the next test is to wear in the day and see what happens then. I suspect there is some sort of compression going on and thank you for pointing CCI out to me as this is a direction i wouldnt have thought of as i pressumed from Drs nothing on my MRI or CTS had any impact.
Can i ask please, when you talk about putting the neck into flexion, when i look down it causes huges problems for me in so many ways, but if i actually have my head to the extreme so that my chin is in my chect if you know what i mean, if i was like that any longer than a minute i would always trigger one of those awful “migraines” with in seconds. Surely chronic migraine can not be triggered by having your head down like that, i would think that would be a major indicator of something cranial too? I get a dull pain in the back of my neck and lower head when looking down or extreme left to right, and the very painful stabbing pressure behind my eyes and forehead with nausea is immense. Does this sound like classic CCI. Is therer a name for when you describe our peg like bones in the c2 area being the wrong way? I couldnt find it. Is this another EDS common thing.
But thanks again, i am going to continue reading and experimenting with the cervical rigid collar as soon as it arrives. Sorry for all the questions, its just this could be quite relevant for me i feel
I mentioned Hughes, only becuase i had an online friend with EDS/POTS who had chronic migraine (aswell as other problmes) but she mentioned as i have so many headache issues too, try being tested for it. I put it to the bottom of my list as i pressumed that cant be me i have low blood volume.
Its strange but recently i had the best tests that are avaliable in the UK for blood volume, just had my Renin and Aldosterone checked as well as 24 hour urine metadrenalin and sodium. All were normal, which kind of means now i am not so sure i have low blood volume…..Its all so unpredicatable.
I think a blood test for Hughes Syndrom is well worth checking though. That could make sense with the IV saline, i would guesss that would have an effect on thinning the blood in a more dramatic way than just drinking salt water, else people would just do that. Off to the GP again…..
I wonder if Hughes syndrome has cropped up in many EDS patients? I have read it is common in Lupus.
Thanks again Dr Driscoll
Just for the information for UK people on here especially Ketotifen IS avalible from you GP on the NHS here and so is Nalcrom (Gastrocrom in the USA). I started both this week.
Will bare that in mind with the Zyrtec.
Hi Dr Driscoll
Yes i am with you on the CCSVI, the other week i asked my cardio about it an i saw the flood gates come down lol. I think by saying arterial abnormalities and systemic venous issues will be far easier to put to them!I did see your last vidoe on CCSVI and i get what you are saying totally.
I had my genetics read by 23and me and didnt appear to have blood clotting issues, but i have read a lot of research papaers on thick blood and migraine.The only thing i dont understand if we are prone to blood clotting, how can POTs patients have low blood volume if thats the case? If i take aspirin i get extremely dizzy on standing and i would say thats becuase it thins the blood? Can you have low blood volume but be prone to clotting then?
I have an appointment in about 6 weeks with my neuro so i will let you all know how the (venous thrombosis)goes down lol!!! wish me luck…!
I wonder if you could help me with a few questions here please
I was also dx by a Prof Aziz in London who then moved me onto Prof Mathias and i was lucky, i only had 3 days of Autonomic testing, but it was not the easiest few days of my life, and i had a very serious mast cell reaction to the stress test i had to do which took me weeks to get over, that on top of TTT!!Not an easy time at all but gave me some answers that took years to find!
I suffer with chronic daily headaches, with all the symptoms of neck and shoulder pain and Hydrocephalus. Diamox has helped grately so i know there is an element of pressure going on. I have POTS/EDS after ruling out CFS leaks with an mri, they did notice some disc compression although mild and Epidural lipomatosis. But again they said this was “normal”. After reading up on Epidural lipomatosis it doesnt appear to be normal at all to have as a 29 year old female, anyway they dx me with Migraines vertigo, but i feel there is more to the picture.
Can i ask what should show up on an MRI if you suffer from head intability? I have been sleeping upright with a soft collar and the help it has brought is huge, i am wondering if i too could be suffering with this? Neck movements, be it up or down or left to right can make me so nausea that i loose strength in my whole body, my headaches always start with terible pain in my shoulders and neck. As the day progresses the pain gets worse, always.
What worries me is that although my old nuero from the national nuerology hospital said there was no chiari, he actually sat infront of me when he checked over my images as they had been sent across that day, and he spent 2 minutes looking over them.Is this satisfactory? Also i have read to be sure of a chiari malformation you should be in a upright mri. Do you know how true this is?
I suppose the best way to see if you think you could be suffering from cranial instability would be to wear a rigid collar. Would a neuro even know what to look for if i bring this up at my next appointment?
Thank you Barbara,
You have just described exactly my troubles i have with sleep and i have already began to sleep more upright with a soft collar and the improvements are so obvious as soon as i wake up. I have an order a rigid collar from the interent so it will be intersting to see how i feel with that. Do you think i should start only wearing it at night, or day and night to see if there is a marked difference.
I think he does Laura, I know its central London anyway. Sorry i myself have not seen him, as i have seen more of the POTs and Nuerology side of things.It sounds like if you are being refered there you are going to the right area atleast, but Grahame is the man for EDS in the UK
I live in the UK too, but i am lucky that i have a GP who is understanding. The best thing to do is take print off’s about EDS and the issues you want to bring to your Dr’s attention. If you GP is unwilling to listen i think you need to change your Dr. I have seen Dr’s privately in the UK and on the NHS,so waiting to see a consultant can be a long time. The person you should ask to be refered to is a Prof Rodney Grahame, he is the UK expert in EDS (there really are not many) If you can see him he will hopefully be able to help in some way. It sounds like you need to be refered to a nuerologist or ENT in too in my opinion. With having EDS its very common to have headaches of many kinds. I know a name of a Nuerologist who has experience with EDS patients if you want to PM me.January 4, 2013 at 6:22 pm in reply to: update Diamox and Sodium Cromoglycate Capsules (Nalcrom) #3297
Thats really helpful to know, its a shame my Dr couldnt find gastrocrom here in the UK, but i will give it a try dissolving first and then perhaps trying Ketotifen if it has more benefits to it.
Shall of course post how i get on later!
Well i had very similar symptoms and had a load of tests by a ENT specialist and then a headache expert. I was diagnosd with migraines vertigo, however after visiting here i think its more like Hydocephalus!! Have you been to a an ENT Dr yet?January 4, 2013 at 4:12 pm in reply to: Pots symptoms get worse when lifting something heavy. #3294
I have POTS also, and i am the when i lift things, although on my tilt table test just lifting my arms alone was enough to cause more tachy!So its definately a POTS thing too.