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Miss BirdParticipant
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?
V
Miss BirdParticipantI 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.migraineclinic.org.uk/
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
V
Miss BirdParticipantBrian,
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!)
Regards
V
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!
Miss BirdParticipantThank 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
pseudo-tumor cerebr
Brainstem compressionFingers crossed.
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.
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