March 26, 2014 at 4:59 pm #684
I am hoping that someone can offer some advice. I have been in and out of the doctors/other medical professionals for the last two years(like so many others) and have recently seen a phenomenal cranial osteopath/pain specialist in Chiswick, London who is the first person who hasn’t looked at me as though I am lying and he directed me to you Diana. Diana, your research has crossed the ocean and I do so wish you all luck in its advancement. I also hope that you or someone else might read my symptoms to see if might be able to shed some light. To do this I’d like to tell my story, and I apologise for its length (I will try to be brief).
I am a 28 year old female and I’m currently in my 20th month of chronic daily headaches. I am now on amitryptline, naproxen (for recent neck and back pain) and now my neurologist has suggested pregablin too.
I am hyper-mobile, however only mildly. I have suffered with daily joint pain since I was about 15 as a result of this hypermobility.
My headache first came on suddenly during intercourse and it felt like I’d been hit on the back of the head- it was excruciating- worst headache ever and I had shoulder and arm ache too! After a few days I was headache free but had a headache flare up when straining (eg in the toilet) and my GP sent me to hospital. I had a CT scan, MRI and a lumbar puncture and no sinister problems(thankfully).
After coming out of hospital I started to get headaches everyday(post LP), all day. My headache varies in intensity throughout the day. The headache pain is generally at the back of my head , top and temples. I get occasional sharp stabbing pains which stop me in my tracks. I have a general sensitivity to light and loud noises. I would describe it as a build up of pressure and it definitely worsens with movement and bending(not great for my job). I work a stressful job(teacher), which I adore, and I force myself to do even under my most painful days. When home I barely have any energy and I can sleep for England (it could be the amitryptline).
Last week after having a nervous breakdown in the neurologists office I had an urgent MRI scan of my cervical spine which has shown a slightly bulging disc and slight dehydration of certain discs. The doctor is saying I need yet more physio, more deep tissue and yes, even more accupuncture!! I told him I’ve already done this- he had no comment!
I suggested your theory and suggested potential causes of the pain and asked for a diuretic and I was quite literally laughed out of the office. I quizzed him on if it is muscular why do I have visual disturbances, achey eye balls, nausea and tinitous- he said its migraine symptoms despite me only having had a handful of full blown migraines since the start of all of this. I asked about neck/back pain- he said muscle tension. I asked about whooshing noises, my ears popping all the time and high pitched screeching sounds sometimes when lying down- he had no comment! I then asked to see my skull MRI so that I could analyse it and it was conveniently unavailable(I am getting it next week), but he said the CSF was normal. On my cervical spine MRI he did acknowledge that my cerebellum has descended 4mm into the spinal column – is this chiari? He said it was normal!
I am going to see my GP soon and I hope that he is a little more open minded because if diamox or something similar can really change things over night then I need it now! Do I sound like a candidate who’d benefit from it?
Finally, constant pain is a truly soul destroying issue and I admire all of the people on the these forum for your strength and endurance. Unless you deal with chronic pain you can not understand how difficult it is. I now feel only the shadow of my former self. It’s hard for others to understand and as you slowly drift away from them and life.
Thank you for listening.
P.s my teeth sometime chatter when having a particularly bad headache- weird huh!March 29, 2014 at 7:45 pm #4953Dr. DianaKeymaster
Wow, Miss Bird, I must first ask you who the pain specialist in Cheswick is? We may have some potential for being coauthors… It sounds like you’ve seen The Driscoll Theory? Were you able to get the book? Was your doctor able to see the book? You are doing the right thing in having the “regular” stuff ruled out (we hate to miss a brain tumor, etc)… Many of us have little or no Chiari, but can still “cork”, much like a 5mm Chiari. In the past, radiologists didn’t make the call of Chiari unless it hit 5 mm. That seems a little silly to me, especially if MRI reveals that the brain shifts downward when the patient is vertical (perhaps indicating some hypermobility). Were your opening pressures normal on your LP? High? Low? Frustratingly, the symptoms of low intracranial pressure are almost the same as those of high intracranial pressure (sometimes the patient is more symptomatic in the vertical position with a spinal leak, but not always). What I’ve seen happen in an LP is that the opening pressure is VERY high, but then the draining of CSF just sort of STOPS. This puzzles some of the doctors, but I believe it hints at “corking” at the top of the spine, especially if their is lower pressure below the brain than above the brain. Did your MRI reveal any pseudo-tumor cerebri? That diagnosis will get you a trial of Diamox! 😉 Out of 20 eye exams of EDS patients, I found TWO with pseudo-tumor cerebri that the radiologists missed. They’re human, after all. It happens. When I order MRI’s for EDS patients, I write a small dissertation (ha) and always ask for small slices around the optic nerve to check for pseudo-tumor cerebri. Perhaps the pain specialist in Cheswick would be willing to try Diamox (assuming your CO2 levels are 22 or above). If your headache is from high intracranial pressure, you will know almost immediately, so just a couple of pills will do it. Some say 2 hours. My son and I got overnight relief (as did my daughter, who had headaches her entire life). It is important to know that if we have weak dura (perhaps dural ectasia), with the added risk factor of high intracranial pressure, we can “spring a leak” (spinal). We then develop LOW ICP, that when repaired, usually results in the pressure going too high (again). It’s a tough cycle for both the patient and the doctor. Oh, Topamax (a medication for migraines) has Diamox in it. That may be a more palatable option for the doctors (but it subjects you to the potential side effects of the additional ingredients that you may not need). Please keep us posted!March 29, 2014 at 8:41 pm #4954
Hi Miss Bird,
I’m in the UK too. You’re among friends here, we understand your suffering and the many frustrations of having this ‘hidden’ illness.
My cerebellar tonsils were not herniated 5mm either, so I was diagnosed with ‘low-lying cerebellar tonsils’, by the Chiari Institute in New York, where I had to travel to in order to get a full diagnosis. This level of ‘cerebellar ectopia’ is also sometimes referred to as ‘Chiari 0’ and can be just as problematic, especially if as Diana says, they form a ‘bung’ between the head and spine.
I would also ask your neurologist to be more specific and clarify what he meant by your CSF being ok, had he done a ‘Cine MRI’ to prove that the flow was not restricted in any way? I had this done in New York and it showed a diminished flow.
(UK)March 30, 2014 at 6:52 pm #4956
Becky from ChiariConnectionInternational (yahoo group) says:
“My daughter has a small Chiari 4mm. But according to Dr. Frim has brainstem compression. So if I understood him correctly flow doesn’t matter if you have pressure on your brainstem.”
So, as I understand it, you can also have what looks like normal CSF flow but, still experience symptoms, due to the rogue cerebellar tonsil pressing against the brainstem.
(UK)April 7, 2014 at 11:34 am #4965
Thank you to you both so much. I hoped that one or both of you might reply, so I am elated to hear your advice. In fact just an acknowledge from someone that you are not a liar or that you are not insane is amazing to have.
A lot of the information that you have asked about I currently do not have/know (eg pseudo-tumor cerebri, LP pressure). I’m not sure how it works in the states, but I don’t receive my scan/ hospital notes/reports unless I pay for them. I am seeing a new dr and paying to get the reports and scans now. I have realised that if you’re not a ‘crier’ or melodramatic, if you just deal with your pain then nobody takes your seriously- make a fuss people, being tough doesn’t do you any good- that is my tip of the day!
As for the book, I would very much like to read it- can anyone direct me to it? I managed to get the ‘Your eyes and EDS’, but not the other one.
Also, Diana I feel as though I may have unintentional misled you. My fantastic ‘pain specialist’ (named by me!) is very practised in dealing with pain. He is not a doctor, but a cranial osteopath. He is very interested in ‘biomechanics and the physiology of pain’ (his website) and he has worked on lots of people from new born babies to trauma victims. He specialised particularly in paediatric and neonatal care. He is experienced dealing with chronic pain and just meeting him made this evident, but I’m afraid this may not have been the doctor you might have hoped for. He is unable to prescribe me medication so I am seeing my gp soon to see if he will prescribe some diamox.
Thanks Barbara for your wealth of knowledge on chiari and the cerebellar tonsil. I am looking forward to getting a second opinion but worry that I won’t be taken seriously. I will ask about :
My CSF flow/pressure
The opening pressure of LP
Thank you ladies. May this message find you on a day when you are feeling ‘okay’.
P.s thank you Diana for all of your research and videos – especially the one on depression ,as having somebody to tackle the problem headache is oddly comforting.April 7, 2014 at 3:17 pm #4966
As for the book, I would very much like to read it- can anyone direct me to it? I managed to get the ‘Your eyes and EDS’, but not the other one.
The book is not available at the moment, I don’t think but there are videos on it:-April 8, 2014 at 10:16 pm #4968
I am also in the UK and finding impossible to get help for myself and daughter. We all need a written page we can point our doctors to.
I am aware we are all ill and struggling but we can’t get help without information for our doctors. The videos are fine in themselves but they mention attached papers that aren’t there anymore.
I have recently had head and neck MRIs, the neck one has obvious problems but the head of course shows no obvious reason for my symptoms….I have an appointment with the neurologist on 28th April and I need the information now so I can get him to look at the right things and to take the right decisions about treatment.
I am fantastically grateful that this mess of symptoms has been tied together by Dr Diana, would love to be in the US and have a way to take part in trials, to physically help and would love to purchase the information I need. Life is falling apart for us both and I need information now.
Sorry about my “tone” it’s not meant to be critical in any way but at 4AM awake with splitting head it’s hard to get the nuances right.
BrianApril 9, 2014 at 11:28 am #4969
No probs Brian, I think we all understand exactly how you feel!
With regards to the handouts etc, I have had trouble locating some of these too but if you let us know which documents you cannot access, maybe we can find a way to get at them.
I don’t know if you have seen the post of mine regarding Head and Neck MRI’s and what to look for (and showing examples) it’s at:-
Maybe it will help.
Barbara.April 9, 2014 at 1:25 pm #4971
Barbara is right. Poor you Brian! We completely understand how you feel. It’s rubbish! Try to be as positive as possible. Before I found ‘Dr Diana the wonderful’ and her fantastic theory I too felt the way that you do. I am a positive and happy person and have never been this low. But, I find comfort in knowing that I am not alone. I don’t know if your daughter is a child, but I don’t know how I could get through this if I had children to care for too. I admire all of you who do.
As for the doctors I too have an appointment on the 28th- I wish you luck- keep us posted. Have you watched Diana’s videos that Barbara suggested on this feed. They were great Barbara (thanks) and have helped me to understand the theory more clearly. I am studying up so that I can quiz my doctor.
I am also in the process of getting a second opinion from a recommended neurologist in London. I also read of a headache researcher in Exeter (if your interested I will find out more) who takes on people for clinical trials. Also, there are lots of headache charities in the uk that are appalled by the treatment of us headache sufferers and they might be able to advise you (again more info if you’d like).
I also have beneden health insurance. It costs me around £8 a month and they take patients with pre-existing conditions. They are a charity and their service is limited but they have twice opened cases for me to pay for my MRIs and follow ups up to the value of £1500 each time.
I was told by my osteopath (who recommended this site) that he had a very similar case with a patient before and it took her 3 specialists before someone would acknowledge the Driscoll theory- so hang in there. I have a fantastic GP and I intend on asking him to prescribe me diamox and fingers crossed I will be able to try it before my next neurology appointment (roll on school holidays so that I have more time!)
P.s I read a Japanese saying on one of the forums here that said ‘true endurance is enduring the unendurable’- how true is that!April 10, 2014 at 2:14 am #4972
Thanks. I have a copy of your head/neck mri pictures to take with me.
What I would like is a written version of the Driscoll theory as it stands now and the connection to mast cells etc. The original Driscoll theory videos mention attached documents that aren’t there any more as far as I can see. A copy of the book would be great too but I can’t find one online. I find the videos quite hard to hear clearly and they don’t stick in my befuddled brain…something written I can take to the neuro would be ideal. I have only got the help (well help is pushing it, a diagnosis of sorts is more like it) I have because I know more about EDS than my expert doctors but I find all this too complicated to explain so need papers I can send before the appt.
I know that things are progressing in the US with some acceptance of this now but like many others I have spent the last 14 years trying to get expert (!) doctors to do something for myself and for around 7 years with my now 17 year old daughter Rachel. Our 9 year old is showing some signs too but trying hard not to get her into this stupid loop until we need to. We have mannaged to get Rachel to see a chap in Plymouth who is interested in finding out more and wants to help but Plymouth is hours away so we have to do email consultations and rely on the local Paedatrician who can’t wait for her to be 18 and off his hands….
V. More information about headache trials and UK websites would be great. I hope your new neuro gets somewhere for you. I found the UK brain and spine foundation and a web chat they had about Chiari recently, they had a few questions about the connection to EDS which were not answered well except they mentioned that more work needs doing with this….I suspect Chiari = EDS but the whole world think EDS is so rare that it doesn’t even pop into their heads.
Your Japanese saying is spot on. I feel very sad for people who can’t seem to live without a beer and people who have been well all there lives who want to be bumped off if someone has to look after them when they get old. I have a wonderful life despite all this as I have a best friend for a wife and the most lovely two girls. I count myself extremely lucky as I am also convinced the dodgy genes that give me EDS also give the ability to do many creative things that others can’t. If I didn’t have EDS then I wouldn’t be me.
Thanks for replying, Dr Driscoll’s theory is clearly the way forward for us all, but many of us need help now and can’t wait for peer acceptance and official publication. I just want someone to be convinced enough to let me try Diamox for a few days…
BrianApril 10, 2014 at 11:44 am #4973
I have only recently found these charities so I don’t know how useful they are. I met someone who had also been suffering with chronic headaches and ended up receiving a diagnosis through a headache charitiy because they were genuinely fascinated that she had a headache which had lasted so long- might be worth looking into.
http://www.painrelieffoundation.org.uk/docs/painseries – headache.pdf (look in the help and support section .
http://www.exeterheadacheclinic.org.uk/id1.html – I found this on a charity website. I think you’d need to look into it further, might not be helpful.
Keep us posted on your successes or failures and I’ll let you know if I have any luck.
All the best
VApril 10, 2014 at 7:54 pm #4977
Brian, this is the handout mentioned in the Mast Cell video:-April 24, 2014 at 5:38 am #4987
So i managed to get my GP to prescribe me Diamox for a 2 week trial, however I am not sure that it is helping me as the results have been a little inconsistent. 🙁
Day 1/2 : I felt loads better, no pain upon waking and my headache was significantly reduced (in fact barely there) throughout the day. One thing that i really noticed was that I wasn’t experiencing pain when bending in the shower and my ‘headrush/headache increase’ when moving/standing had decreased.
Day 3: Headache was still minimal but i experienced a few(3 or 4) sharp stabbing pains to my temples throughout the day.
Day 4: Then when on the train i experienced head pain as usual. Still photophobic, nauseated and had temple and base of skull twinges. Saw my Osteopath and he found my rib cage to be twisted and my pelvis had a lot of pressure on it.
Day 5: No pain until 15:00 (great!) then slight nausea, left shoulder pain but no pain increase on jolty train. Numbness in finger and toes and I couldn’t get rid of it for 3-4 mins (new symptom, could it be the diamox?)
Day 6 : N/A – forgot to take pills eve of day 5.
Day 7: Felt really rough. Bad head pain all day, normal symptoms: worse for moving, photophobic, phonophobic, nauseated, pain (took additional pain killers)
Day 8: Slightly better than day 7 but sill experienced ‘normal headache’ symptoms,including aching shoulder .
Day 9: Slightly better than day 8 but sill experienced ‘normal headache’ symptoms, including aching shoulder.
I feel that this is a very mixed conclusion. Is this slow and inconsistent reaction to Diamox normal, i’m not sure it is. I don’t really know what to make of it. Do I ask my Doctor to give me another week or two to continue trying the Diamox or is my problem different to all of you and am I back to square one again (I do hope not).
I also have another appointment with my Neurologist on Monday. Brian, did you find any useful handouts/ research to present to your doctor that I might be able to use too?
VApril 24, 2014 at 5:38 pm #4991
Quick reply –
The train journeys seem to exacerbate. Other than the fact that they are jerky, check the seating! I found anything flat up against my back/head i.e. mattress, straight backed armchair or settee (or worse a forwards headrest) worsened symptoms, as it pushes the head into flexion. It might be worth buying a horse-shoe shaped ‘cushtie’ to support your neck and head whilst your travelling, to keep your head and spine well aligned, therefore allowing free-flow of cerebrospinal fluid between the two structures.
Diamox causes me strong pins and needles in hands feet but I persevere, as those brief moments are small price to pay for otherwise improved comfort from head discomfort, eye pain, loud tinnitus etc.
Diamox can stop working if your blood levels change (get potassium, calcium and bicarb levels checked every 2 months).
Hope some of this helps
(UK)May 4, 2014 at 2:14 am #5010
Wrote long reply then website says I failed security test and its all gone….
Saw neuro after getting lots of info from EDS uk website. (theynhave good closed facebook group too) He thinks upright MRI would be good but knows trust won’t pay for them. He suggested lumbar puncture but we agreed to Diamox trial until I see him again in 6 weeks. Still no physical exam.
Diamox has reduced constant headache but am more confused, word finding harder, tinnitus much worse and still getting sharp pains on head movement/bumps in car etc. Will stick with it.
Gp confirmed that she referred me in October 2013 to NHNN London Autonomic unit. Heard nothing from them yet….but looks like the place I need to be.
Hope you get some answers and help soon.
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