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Topic: Finally got in to Nuero (Read 623 times) |
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Jenny G
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Finally got in to Nuero
« on: Feb 7th, 2006, 11:48am » |
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He told me to stop the Kudzu & B12 I was taking! Did not give a reason, said it was a bad idea.
He prescribed Prednisone 60mg / 10 mg 6 x's a day
Depakote 50mg I think
Imitrex injectibles after I begged for them. However I've since found out HOW damn expensive they are.
I've heard a lot of bad things about the "preventatives" above. He also told me I was rare that he had only seen one other female CH patient in all his years and she was 70 years old. Mine have plagued me since I was 15.
He also ordered and EEG and MRI, I feel like this is a giant waste of money (I have a $5k insurance deductible)
Any input?
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marlinsfan
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Re: Finally got in to Nuero
« Reply #1 on: Feb 7th, 2006, 11:53am » |
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Input: go back and get oxygen. And get the EEG and MRI just to rule out other stuff like tumors.
If you're doc is 70 and diagnosed you correctly, that is awesome! I went thru 20+ years of misdiagnosis until I found the right neuro.
PF wishes.
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Jenny G
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Re: Finally got in to Nuero
« Reply #2 on: Feb 7th, 2006, 12:03pm » |
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Sorry, I just realized I worded it weird (lack of sleep).
His only other female patient was 70, not him.
Oxygen has never helped me mid-cycle, so that is why I went. I've never taken meds before since my diagnosis about 17 years ago, all that was available to me then was Midrin and did NOT work.
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nani
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Re: Finally got in to Nuero
« Reply #3 on: Feb 7th, 2006, 12:10pm » |
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on Feb 7th, 2006, 11:48am, Jenny G wrote:He told me to stop the Kudzu & B12 I was taking! Did not give a reason, said it was a bad idea.
Any input? |
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Input? Yeah...he's an idiot. Was the kudzu helping at all? B12 a bad idea? Were you using oxygen correctly when you tried it? Look at the link on the left, it'll show the right setup you need in order for it to work. An MRI and other tests are always wise, to rule out other, more dangerous problems. If he's only seen one other female CH patient, you may want to find one that has more experience. Women with CH are not as rare as was once believed.
I have the best neuro... he really just wants me to find relief.
pain free wishes, nani
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| « Last Edit: Feb 7th, 2006, 12:11pm by nani » |
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Bob_Johnson
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Re: Finally got in to Nuero
« Reply #4 on: Feb 7th, 2006, 1:31pm » |
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If money is a real barrier, skipping the EEG/MRI carries little risk.
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(From British Medical Journal)
To scan or not to scan in headache
Some patients with primary headaches may need imaging
Some life threatening brain disorders present with secondary headache, where the headache is caused by the disease. A brain tumour, for example, is best diagnosed by brain imaging early in the course of the disease, which is essential for optimal management of this and other secondary headache disorders. However, brain tumours, as an example, account for less than 0.1% of the lifetime prevalence of headache.1 This contrasts with the fact that most headaches in the community are either associated with mild systemic infection or due to primary headache,1 where the headache is itself the disorder. Dissecting primary from secondary headache is the problem, since, by definition, primary headache does not need brain imaging because no disease process exists that leads to macroscopic change in general terms.
How does one dissect primary from secondary headache? This question can have only a clinical response since no controlled trials have been conducted to identify causes of secondary headache. In clinical practice we generally accept that the so called red flags of headache should trigger a search for secondary headache.2 Thus change in the pattern of headache; new onset of headache in people older than 50; onset of seizures or headache associated with systemic illness, including fever; personality change; or with symptoms suggestive of raised intracranial pressure, such as new onset headache in the early morning; or headache that is worsening with coughing, sneezing, or straining should each be viewed with concern. Acute onset of the worst headache of the patient's life should trigger immediate referral for consideration as a sentinel headache of an intracranial aneurysm. An abnormal neurological finding is a clear indication to investigate, unless the finding is longstanding.2 Fortunately most worsening of headache is probably longstanding primary headache going into a more troublesome period, which mercifully is not a marker of a life threatening problem.
BMJ 28 Aug 2004[Not complete article here.]
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| « Last Edit: Feb 7th, 2006, 1:32pm by Bob_Johnson » |
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sandie99
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Re: Finally got in to Nuero
« Reply #5 on: Feb 8th, 2006, 3:20am » |
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I recall Prednisone... I have have a low blood pressure, so I fainted 5 times before my neuro believed that we should try something else.
What comes to neuros... I've met 5 of them. Some knew ch very well, some had no idea. In the end you know yourself a lot about your ch and the more you know, the better. When you go to see your neuro, recall that it's really up to you what meds you'll be using. One of my neuros put me on indomethacin, because he was sure that ch expert neuro's diagnosis about my ch was incorrect. Result? I got three 8-hour migraines, which made me stay in bed and cry. Then I got ch 11 times a day, which was very "nice". After that neuro believed that I actully have ch... 
If kudzu an B12 help you out, think yourself, if you should continue using them. On my opinion, if something helps, use it. I have imitrex waiting of nest hit...I hope it will never show up, because I can't stand injections.
Best wishes & PF time,
Sanna
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Richr8
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Subtract Dep add Verapamil
« Reply #6 on: Feb 8th, 2006, 11:47am » |
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and O2, and it sounds just like my script. It breaks my cycle, and oh yes all the nightmares about Pred are true. I have major sleep dep and psych issues with pred not to mention all of the physiological SEs that it nurtures. I combat many with supplements. I recently added Melatonin to the mix and it helped immensely with the sleep dep problems caused by CH and the pred.
I'm still looking for a panacea, but this treatment will drop the beast in her (gotta be a girl) tracks. Just hard getting back on your feet.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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