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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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My ME is in remission

Messages
30
@JenB I imagine even an insanely healthy person would be overwhelmed by the amount of questions/comments you're tackling now so I'm not sure that you'll see this.. But I wanted to say thank you, and I'm so so happy for you. I cried reading your Medium article. Your film made me feel so much less alone in a life that's incredibly isolated and your recovery gives me a glimmer of hope. I am 29 and have lost my 20s to this, mostly housebound.

I'm just so so happy that you can finally get back to your life, that your husband has his healthy wife back, and that you can use your intellect and passion to your true potential. If you could make Unrest while so unwell then I can't wait to see what you'll do next. I'm sure you'll be a powerful advocate. Thank you so much - Love, Hannah
 

JenB

Senior Member
Messages
269
Her paper (The Driscoll Theory) is worth a read. As far as I know, this isn't "official" drug treatment for Chiari, but she's presented at some continuing educations conferences (for EDS or POTS, I forget which, maybe both) explaining why Diamox should be considered for such. Her publications, youtube channel, prettyill forums, anecdotal cases of patients in various un-affiliated forums, and research is available for perusal. Might be a facebook group too.

As I understand, only some Chiari - that caused by IHH (idiopathic intracranial hypertension) - would be helped by this. But if you fit the appropriate profile, it's a low risk theory to try out compared to say, surgical decompression, and a virtual cure if IHH is the underlying reason.

I find it reassuring to see that there's "more than one way to skin a cat". (as the colloquialism goes - please don't skin actual cats). :eek:;)

IIH can have many causes. If you have IIH due to overproduction of spinal fluid, Diamox is likely to help. If it is due primarily to poor venous drainage, Diamox (which reduces spinal fluid volume) may not help. If you have IIH due to poor spinal fluid flow because of Chiari, it could relieve some symptoms, especially if the core problem is that the Chiari is causing IIH, but IIH is not the only problem Chiari can cause. It is definitely not a drug treatment for Chiari and certainly not one for CCI.

Many EDS and ME/CFS doctors prescribe Diamox. It is a common treatment for IIH. It’s definitely worth a try if you have IIH but its results are often disappointing (because IIH can have many causes, Chiari can have many consequences).

Very glad it worked for her family, though, and will work for some.
 
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Judee

Psalm 46:1-3
Messages
4,408
Location
Great Lakes
At ERs and in consult rooms, multiple doctors were entirely unconcerned.

@JenB, this reminds me about something I read yesterday on the Hunter Hopkins website about Linda Hopkins that says,
"Linda Hopkins presented to the emergency room complaining that she could not breath when she nodded off to sleep. As a result she had not slept in weeks. Other physicians had discounted her story as impossible, but Linda and her mother convinced Dr. Lapp to look into it further. Linda was hospitalized and monitored overnight. Sure enough, as soon as she nodded off, Linda went into respiratory arrest – a very severe form of sleep apnea now known as “Ondine’s Curse.” Once the problem was identified, Linda was fitted with a respirator to be used while sleeping. Lesson learned: listen to the patient."

When I did an internet search for Ondine's Curse, Wikipedia gave me this post which says, "ACHS can develop as a result of severe injury or trauma to the brain or brainstem.
 

vision blue

Senior Member
Messages
1,865
Remnds me a bit of Perrin's argument that ME is caused by neck problems. (structural issues and lymph drainage)

i had something happen recently that's making me consider all of this as more relevent to my own case than i thought. I had somehow assumed that my increasing neck and shoulder issues were just an added burden but not part of the general process. Too tired to type in what's happened recently that's making me think otherwise.
 

MartinK

Senior Member
Messages
364
Yeah, I remembered Perrin too!
Tomorrow arrived my Aspen Vista Multipost Collar...really looking forward for testing what happens!
I also taught my mom to perform cervical traction.
 

kewia

Senior Member
Messages
233
Hi @JenB, are you still well?
I impressed by your story as well as for Jeffs.
I don't know if I missed some fact in this thread, but did your insurance covered the fusion?

And what me also interests is, did you encounter any spine impairments below C2 due to fusion?
 

Wishful

Senior Member
Messages
5,658
Location
Alberta
What also puzzles me is why weren't symptoms more apparent in youth, or in teenage years?

One possibility is that ME developed from the immune system's reaction to the CCI tissue damage, and it wasn't until the immune system weakened with age--or from other factors--that it triggered and sustained the ME state.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Hi @JenB, are you still well?
I impressed by your story as well as for Jeffs.
I don't know if I missed some fact in this thread, but did your insurance covered the fusion?

And what me also interests is, did you encounter any spine impairments below C2 due to fusion?
You can follow @JenB 's story on her Medium account at: https://jenbrea.medium.com/?p=8575c7d47e53
The last post was Feb 2020. She's active on Twitter at https://twitter.com/jenbrea?ref_src=twsrc^google|twcamp^serp|twgr^author