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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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Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

ahimsa

ahimsa_pdx on twitter
Messages
1,921
As far as orthodox mecidal tratments here s what my doc said actually now mixed in with my own suggstions sorry

drugs were florinef - didn't work for me
then midrodine - you do 48 hour halter nonitor test firs tand my BP was just too hight ot have it; it is a vasoconstictor
then I tried licorice root caps 2 per day and these do seem to help

exercise boosts blood volume if you can do it
avoid walking - that is the worst thing to do
high salt diet and salt drinks ( we add potassium )
avoid standing when hot
wear light comprssion clothing esp round abdomen - ie does not need to squeeze too tight

avoid getting hot
avoid heat to abdo - eg laptop computers on your tummy - not good at all dilates large abdominal blood vessels
don t go thirsty
avoid queues and supermarkets ... lots of slow walking

imho - lie down whenever possible - this seem to help me and I only stand up when I need to and keep your feet up if you have to sit up

looking at stem cell tranplants and genetic typihg as the way forward
...
These are useful tips.

But most of these, minus the stem cell therapy, sound like the same suggestions that I have seen for years on how to deal with symptoms from Orthostatic Intolerance. For example, most of these have been posted on the forum section for OI.

And here's an excerpt from the Johns Hopkins patient handout on Orthostatic Intolerance:
[note - I copied only the highlights, see the full document for details]
When do NMH and POTS lead to symptoms?
Symptoms of NMH and POTS usually are triggered in the following settings:

* with quiet upright posture (such as standing in line, standing in a shower, or even sitting at a desk for long periods),
* after being in a warm environment (such as in hot summer weather, a hot crowded room, a hot shower or bath),
* immediately after exercise,
* after emotionally stressful events (seeing blood or gory scenes, being scared or anxious).
* in some people, after eating, when blood flow shifts to the intestines during digestion.
* if fluid and salt intake are inadequate
How are NMH and POTS treated?
Treatment of these conditions is often quite challenging. Because patients have a different mix of underlying contributors to their orthostatic intolerance, therapy has to be tailored to the individual, and usually requires persistence and a willingness to try multiple methods. The approach we use has been based on the available evidence from formal studies and from our experiences treating large numbers of individuals. We use a stepped approach. Step 1 focuses on non-pharmacologic treatments, Step 2 involves use of a single medication, and Step 3 involves rational and judicious use of more than one medication.
Step 1: Non-pharmacological treatments:
a. Avoid prolonged sitting, quiet standing, warm environments, and vasodilating medications.
b. Use postural maneuvers and pressure garments.
c. Treat contributing medical conditions.
d. Increase salt and fluid intake.
e. Physical therapy and exercise
Steps 2 and 3:
(medications that help are listed here)
It sounds like you are framing your suggestions as treatment for EDS vs. treatments for OI. I understood Sushi's post about things that were specific to EDS (e.g., not overstretching) and your comments about maybe EDS affecting the gut or causing IBS.

But I don't understand why you are listing known treatments for OI as treatments specifically aimed at EDS. What am I missing?
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Allyson, thanks for all your suggestions. For me, as i have said, laying down is not significantly better than sitting. I have tried diets, and many other things besides, with very mixed results.

I will always keep trying to find a treatment that wirks for me.
I do not have a problem with heat, infact i find cold intolerable and need to be toasty warm all the time.

Take care, Justy.
 
Messages
41
Location
Kent, UK
I do not have a problem with heat, infact i find cold intolerable and need to be toasty warm all the time.
Same with me too, i need to keep either well wrapped up in lots of layers or keep a hot water bottle on me most of the time. Even before i became ill, I didnt have very good tolerance for the cold, and loved the heat. On a boiling hot summer day where everyone else was hot and bothered, I actually loved it lol
 
Messages
445
Location
Georgia
But I don't understand why you are listing known treatments for OI as treatments specifically aimed at EDS. What am I missing?

The valuable message I have taken away from Ally's posts are not just the logical treatments for OI/ POTS. It was the idea that OI/ POTS does not exist in a vacuum. The CTDs are the umbrella; POTS/OI is just one factor under that big umbrella. And aggravating POTS/ OI seems to aggravate all of the other symptoms of CTDs (also underneath the big umbrella).

I have taken Ally's suggestions as practices to ameliorate CTD-caused ME/CFS. If it is sitting or standing on your head that helps you, I don't think anybody would object. I was personally very intrigued by Ally's cause-and-effect story though.

Dr. Rowe, after devising the TTT, and establishing the theory of POTS/ OI did mention weak connective tissue as a genesis to all these problems. But many in the patient community seemed to have ignored his last observation; and take POTS/ OI completely out of context, as a chemical pathway disorder, immunological disorder, etc. I guess anything's possible-- but Ally sure has made an excellent case.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Hi Ally - ....
For me, having been ill for so mnay years and living in the UK with no access to testing i am still trying to slowly rule out other diseases, i also follow the work of the top researchers - Montoya, Peterson, Myhill, Mella and Fluge, Klimas, KDM etc. I see that they are helping people with Gut protocols, antivirals, and immune modulators. I see these treatments helping many to have better functioning, or in some cases remissions.
...
One thing is would be easy to do Justy is mark in your diary any day you have a good day to keep a reord of how often and when they occur

eg today is a good day for me - i feel perfectly normal and when I do I am symptomefree; no poly uris aor polydipsi.a..oK a little bit of dizziness when I get up.
yesterday aI ate wheat bread and butter andall the wrong things; but I lay down most of the day.

The thing is if those other things help that is great, but if they do not if you are like me you maay get worse as you get older ... I used to be able to sit up in a chair etc. Iused never to have dizziness, tha tdevelped later.
So it soes not hurt to keep an eye on things form this point of view anywqy , and if CTD is the cause of your porblems the other things are unlikey to help much I guess.


I found note s from my docs lecture and note thatthe brain has huge enery requirement and NO energy reserves... it need constant feeding ... and the blood volume drop is enormous ...something like 600 mls blood "disappeears" from circulaton when you stand up- my notes and memory are not entirely clear but that is the gist.

All the best,
Ally
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Same with me too, i need to keep either well wrapped up in lots of layers or keep a hot water bottle on me most of the time. Even before i became ill, I didnt have very good tolerance for the cold, and loved the heat. On a boiling hot summer day where everyone else was hot and bothered, I actually loved it lol

So that is ireally intersatign Jonny boy thatnsk as heat intolerance I thought was a major problem fo ra lot of us; it may well turn out to be one of the useful indicators for deciding on sub types or variants of the illness.

I will start a poll when I work out how but it would be interestign to see who can tolerate heat and who it bothers; It has bothered me all my life and my mother was the same.

I will also start observing if I ever have "good days " when it is hot- I don t think so.
I think I can pretty well guarantee on ahot day I wil be feelig bad.
That said I dont like thcold muc either and hate being out in cold weather and have noticed this since I was about 16.
So I think temperature regulation is a problem too, maybe a separate one to heatr intolerance.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Oh thanks Justy, that iintersting... so your symptoms are not worse int he heat.? or the next day?

Mine become unbearable

but ...just thought ...do you see heat over there?

Not meaning to be rude but it was 40 degrees celcius here the other day so you may never actually see heat like that?
[In winter i am fighting over the heater that is for sure]

Also I recall that hernias and prolapses are part of the EDS type 111 picture and I think it would explain the gastroparesis that I think a lot of us have too - tho that is really hard to measure too
best,
Ally
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
The valuable message I have taken away from Ally's posts are not just the logical treatments for OI/ POTS. It was the idea that OI/ POTS does not exist in a vacuum. The CTDs are the umbrella; POTS/OI is just one factor under that big umbrella. And aggravating POTS/ OI seems to aggravate all of the other symptoms of CTDs (also underneath the big umbrella).

I have taken Ally's suggestions as practices to ameliorate CTD-caused ME/CFS. If it is sitting or standing on your head that helps you, I don't think anybody would object. I was personally very intrigued by Ally's cause-and-effect story though.

Dr. Rowe, after devising the TTT, and establishing the theory of POTS/ OI did mention weak connective tissue as a genesis to all these problems. But many in the patient community seemed to have ignored his last observation; and take POTS/ OI completely out of context, as a chemical pathway disorder, immunological disorder, etc. I guess anything's possible-- but Ally sure has made an excellent case.


Thanks Mish Mash,

as usual you said it better than I ever could so thankyou.

Yes I am finding new things that help based on this theory - thanks for the link Ahimsa too - that is very validating

In particular I find avoiding laptop heat to the abdo by changing the pillows under it seems to be helping a lot, as does staying out of hot weather

I had another good day today [well morning anyway}- second in 2 weeks which is a lot for me, and my mood is generally very much better now too.

Thanks every one again for the interest and very helpful feedback.
Ally
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Ally - yes you are right, no 'real' hot weather here. But i was in south of France this year and loved the warmth - but i cant sit in the sun - must be in the shade. I dont really tolerate direct sunight or cold (fussy old thing me)

I read up a lot on CTD's yesterday and noted that LUPUS (which my symptoms are very similar to), is an autoimmune CTD. I am hoping to get tested for Lupus in the new year. My crashes definately come from over exertion - i tend to have a few good days, overdo and then have a gradual crash over a week into a full crash which if i rest lots (reclining or sitting) will overcome in about 3-7 days.

My daughter is here for Christmas - she is the one i mentioned who has been ill - much better now, still no diagnosis but still fatigue and other immune/gut problems. She has hypermobile joints. We chatted yesterday and she can bend her thumb back to touch her forearm, can almost touch her nose with her tongue, had multiple fractures and sprains as a child from simple falls etc. My youngest son has developed ankle pain (hes 12) and he often seems more tired than other children - anyway it turns out he can also touch his thumb back to his arm.

I think if we can then genetic testing would be the best way - i dont want any of my other children to get sick as well (or at least go through the hell of no diagnosis like me and my daughter. My daughter also had fainting spells a few years back and was virutally bedbound for many months. I am going to look into private genetic testing here in the UK.

I hope you are having a happy holiday period.
Best wishes, Justy.x
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Hi Justy,

sorry to hear about your kids too but feinting at that age is a classic indicator apparently.

And with the bendy joints it sounds like it is definielty in the picture for your family.

I will let you know if i have any luck with genetic testing here but wont be til february,

Not that I really need it; I am sure I have it now but it would be nice to get hte gene confirmation.

Last night I saw again the lovely French move Mic Macs and there is a contortionist in it who bends back in half; amazing; well she has the classic EDS 3 fetures - large eyes, thin lips heart shaped face and smallish ears.

(incidentally there is a also character in it called Mishmash.....coincidence Mish if you are reading?)

Great movie for adults and adolesent/ kids too- a sex scene or two in it but really nothing to what you see on tv every day methinks as far a akids watching it

It got great coverage in France but very little eslewhere for some strange reason when it was released.

And sorry to harp but i do suggest you try and note the difference between resting ....and resting recumbant and see if that helps more.
All the best,
Cheers,
Ally
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
These are useful tips.

And here's an excerpt from the Johns Hopkins patient handout on Orthostatic Intolerance:

It sounds like you are framing your suggestions as treatment for EDS vs. treatments for OI. I understood Sushi's post about things that were specific to EDS (e.g., not overstretching) and your comments about maybe EDS affecting the gut or causing IBS.

But I don't understand why you are listing known treatments for OI as treatments specifically aimed at EDS. What am I missing?

hi Ahimsa and thanks for the reply and the excellent link to the John Hopins doco

I had not seen that and it is gratifyin to see in validates my onw experiences exactly.

(Only raising the head of the bed did not help me at all)

I supposse what I am pointin out that is new is that I think a lot more of us have OI than are aware of it as it has sometimes few symptoms - apart from all the ME symptoms includin PEP and crashing.
SO I guess i am agreein with my doc that faulty connective tissue could be the cause of ME for many people at least. Or of one sutb type of ME
It seem the most logical explanantion and the only one that explains some things - like heat intorlerance , which would be unaffected if it was a mitochondrial issue. And the intermittent nature of the illness - if it is mitos, why do we have good - nay perfect days sometimes?

also mito does not expalin hyperacousia or photophobia really to my mind but this idea does.

Cheers and thatnks agoin for the great link.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
hi Ahimsa

also I would like to add
this may have been around for a while .. that is good news, it means it is not some new thing out of the blue, and others have noted the same thing

but if it IS right and is the cause of ME for most of us , then we have something to work on for a cure

it is something that would be easily tested in a controlled study
but also something we can observe inourselves by observig if beinghorizontal makes us better than resting upright - the latter does not cure me at all anymore.

So I am hoping someone will do it a prove it - or disprove it

But I would like people to think about it seriously and observe themseves

People are PM ing and saying "yes I am bendy" or "yes I have blackouts" ....but ....that cant be right can it as we have not heard much about it.

it is very subtle and insidious and yet it makes us very very ill.

Andt is not as though this line of thought is coming from, say, an astrologer; it is coming from several medical sources at the highest level.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
here are a couple of relevant 2001 articles on dysautomia which Shell has kindly hunted down for us.

Thanks Shell !!!

http://web.archive.org/web/20110716023555/http://www.fmpartnership.org/Lavin%20article.htm

http://web.archive.org/web/20031018070156/http://www.ima.org.il/imaj/ar01oct-9.pdf

Martinez-Lavin says this in his 2001 paper which is sad:

"I am convinced that scientific evidence will eventually disprove FM non-believers. Both patients and heath care providers have to be daring and move away from the decrepit medical paradigm that views any illness without obvious structural damage as non-existent or as belonging to the realm of psychiatry."
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
The valuable message I have taken away from Ally's posts are not just the logical treatments for OI/ POTS. It was the idea that OI/ POTS does not exist in a vacuum. The CTDs are the umbrella; POTS/OI is just one factor under that big umbrella. And aggravating POTS/ OI seems to aggravate all of the other symptoms of CTDs (also underneath the big umbrella).

I have taken Ally's suggestions as practices to ameliorate CTD-caused ME/CFS. If it is sitting or standing on your head that helps you, I don't think anybody would object. I was personally very intrigued by Ally's cause-and-effect story though.

Dr. Rowe, after devising the TTT, and establishing the theory of POTS/ OI did mention weak connective tissue as a genesis to all these problems. But many in the patient community seemed to have ignored his last observation; and take POTS/ OI completely out of context, as a chemical pathway disorder, immunological disorder, etc. I guess anything's possible-- but Ally sure has made an excellent case.

Another thought I hd on this topic overnight

It is not an easy thing to diagnose - but then if it was easy we would have found it sooner
In other words, the fact that it has been so hard to determine the cause of our illness means that the answer was never going to be and easy clear- cut one.

Mish Mash might be able to say this better for me?
 
Messages
445
Location
Georgia
Hi Justy,

sorry to hear about your kids too but feinting at that age is a classic indicator apparently.

And with the bendy joints it sounds like it is definielty in the picture for your family.

I will let you know if i have any luck with genetic testing here but wont be til february,

Not that I really need it; I am sure I have it now but it would be nice to get hte gene confirmation.

Last night I saw again the lovely French move Mic Macs and there is a contortionist in it who bends back in half; amazing; well she has the classic EDS 3 fetures - large eyes, thin lips heart shaped face and smallish ears.

(incidentally there is a also character in it called Mishmash.....coincidence Mish if you are reading?)

Great movie for adults and adolesent/ kids too- a sex scene or two in it but really nothing to what you see on tv every day methinks as far a akids watching it

It got great coverage in France but very little eslewhere for some strange reason when it was released.

And sorry to harp but i do suggest you try and note the difference between resting ....and resting recumbant and see if that helps more.
All the best,
Cheers,
Ally

I think i sawt that movie. Is it about the evils of the armanents trade? A guy lives in a cave in garbage pile? I have forgotten the rest of it. It was a very french movie. Full of double meanings, ironies, philosophical metaphors. Not many explosions or car chases. I didn't remember a person named mishmash. Wasn't there an asian lady named Ma Chow or something? it has been a while.
 
Messages
445
Location
Georgia
Another thought I hd on this topic overnight

It is not an easy thing to diagnose - but then if it was easy we would have found it sooner
In other words, the fact that it has been so hard to determine the cause of our illness means that the answer was never going to be and easy clear- cut one.

Mish Mash might be able to say this better for me?

Ally,
I suspect it has been hard to find, because it is so simple. It is like the elephant sitting in the living room. Everybody is looking for esoteric explanations for OI/ POTS, like malfunctioning neural pathways, incorrect signalling, etc. I wish they would just check out the simple hypotheses first, then move on to the complicated ones. People seem very suspicious of ideas that are too simple. If it is a painful disease, the reason has to be very complex.
 
Messages
445
Location
Georgia
I posted this before, but it got moved or something.

But, speaking of diminished blood flow to the brain, what if Alzheimer's was as explainable as something as this. Interesting that at least some of this reduced blood flow is passed genetically from the mother. What if it were the common foundation for many neuro-immune diseases?

Cereb Cortex. 2012 Dec 12. [Epub ahead of print]
Cerebral Blood Flow is Diminished in Asymptomatic Middle-Aged Adults with Maternal History of Alzheimer's Disease.


Okonkwo OC, Xu G, Oh JM, Dowling NM, Carlsson CM, Gallagher CL, Birdsill AC, Palotti M, Wharton W, Hermann BP, Larue A, Bendlin BB, Rowley HA, Asthana S, Sager MA, Johnson SC.
Source

Geriatric Research Education and Clinical Center, William S. Middleton Memorial Veterans Hospital, Madison, WI, USA.
Abstract

Cerebral blood flow (CBF) provides an indication of the metabolic status of the cortex and may have utility in elucidating preclinical brain changes in persons at risk for Alzheimer's disease (AD) and related diseases. In this study, we investigated CBF in 327 well-characterized adults including patients with AD (n = 28), patients with amnestic mild cognitive impairment (aMCI, n = 23), older cognitively normal (OCN, n = 24) adults, and asymptomatic middle-aged adults (n = 252) with and without a family history (FH) of AD. Compared with the asymptomatic cohort, AD patients displayed significant hypoperfusion in the precuneus, posterior cingulate, lateral parietal cortex, and the hippocampal region. Patients with aMCI exhibited a similar but less marked pattern of hypoperfusion. Perfusion deficits within the OCN adults were primarily localized to the inferior parietal lobules. Asymptomatic participants with a maternal FH of AD showed hypoperfusion in hippocampal and parietofrontal regions compared with those without a FH of AD or those with only a paternal FH of AD. These observations persisted when gray matter volume was included as a voxel-wise covariate. Our findings suggest that having a mother with AD might confer a particular risk for AD-related cerebral hypoperfusion in midlife. In addition, they provide further support for the potential utility of arterial spin labeling for the measurement of AD-related neurometabolic dysfunction, particularly in situations where [18F]fluorodeoxyglucose imaging is infeasible or clinically contraindicated.




Another one:

Vasc Health Risk Manag. 2012;8:599-611. doi: 10.2147/VHRM.S34874. Epub 2012 Oct 23.
Cerebral blood flow in Alzheimer's disease.

The Longtine Center for Neurodegenerative Biochemistry, Banner Sun Health Research Institute, Sun City, AZ 85351, USA. alex.roher@bannerhealth.com
Abstract

BACKGROUND:

Alzheimer's disease (AD) dementia is a consequence of heterogeneous and complex interactions of age-related neurodegeneration and vascular-associated pathologies. Evidence has accumulated that there is increased atherosclerosis/arteriosclerosis of the intracranial arteries in AD and that this may be additive or synergistic with respect to the generation of hypoxia/ischemia and cognitive dysfunction. The effectiveness of pharmacologic therapies and lifestyle modification in reducing cardiovascular disease has prompted a reconsideration of the roles that cardiovascular disease and cerebrovascular function play in the pathogenesis of dementia.
METHODS:

Using two-dimensional phase-contrast magnetic resonance imaging, we quantified cerebral blood flow within the internal carotid, basilar, and middle cerebral arteries in a group of individuals with mild to moderate AD (n = 8) and compared the results with those from a group of age-matched nondemented control (NDC) subjects (n = 9). Clinical and psychometric testing was performed on all individuals, as well as obtaining their magnetic resonance imaging-based hippocampal volumes.
RESULTS:

Our experiments reveal that total cerebral blood flow was 20% lower in the AD group than in the NDC group, and that these values were directly correlated with pulse pressure and cognitive measures. The AD group had a significantly lower pulse pressure (mean AD 48, mean NDC 71; P = 0.0004). A significant group difference was also observed in their hippocampal volumes. Composite z-scores for clinical, psychometric, hippocampal volume, and hemodynamic data differed between the AD and NDC subjects, with values in the former being significantly lower (t = 12.00, df = 1, P = 0.001) than in the latter.
CONCLUSION:

These results indicate an association between brain hypoperfusion and the dementia of AD. Cardiovascular disease combined with brain hypoperfusion may participate in the pathogenesis/pathophysiology of neurodegenerative diseases. Future longitudinal and larger-scale confirmatory investigations measuring multidomain parameters are warranted.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I think i saw that movie. Is it about the evils of the armanents trade? A guy lives in a cave in garbage pile? I have forgotten the rest of it. It was a very french movie. Full of double meanings, ironies, philosophical metaphors. Not many explosions or car chases. I didn't remember a person named mishmash. Wasn't there an asian lady named Ma Chow or something? it has been a while.

yes it was done in a light comic way though; I had forgotten the contortionist til i saw it the other night and she is CLASSIC EDS !

i must find out if all contortionists have EDS.

Mish mash is the lead female character.

It's well worth another viewing IMHO; great movie form the guy who made Delicatessen I think.
 

sandgroper

Senior Member
Messages
104
Location
west australia
Sushi,like you I developed ME later in life at 29. Looking back I can see I had POTS symptoms in my 20s. I had allergies all my life. So it seems like you said EDS predisposes one to ME as it does to POTS. The link to dysautonomia and EDS is there in the literature. It does seem that EDS sufferers are more prone to infections and that is the usual explanation i believe of ME. It could also be that infections are part of the ongoing illness for some. I have not thought that I had any ongoing infections due to not having swollen lymph glands and rarely sore throats. In fact apart from HSV I have not had many viral episodes, probably less than the normal population.

Dr Hyde does not believe that swollen lymph glands are part of ME. i don't have flulike symptoms. I have read a lot about EDS sufferers who don't have ME and they do get fatigue but do not seem to get the crashes from minor activities like being in a car for a few minutes. Or from trying to do a calculation in their heads.

Dr hyde does see a group of patients with Ehlers Danlos who have developed ME in their 30s. My suspicion is this is maybe a unique group (including me) that are currently either dx with ME and that there may be a group of patients who have EDS and something else that is currently called CFS. In other words, not everyone with EDS necessarily has the same illness, clearly some have a mast cell disorder, some have POTS, some have all 3, so it might be a bit like lupus where you get different presentations.

there are patients in australia with EDS who are beoing diagnosed with Lyme and I believe Dr Shoemaker says they are prone to Mould toxicity.

Sorry this is so rambly but i can only write when i am wired and now i am too exhausted to edit...
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It seem the most logical explanantion and the only one that explains some things - like heat intorlerance , which would be unaffected if it was a mitochondrial issue. And the intermittent nature of the illness - if it is mitos, why do we have good - nay perfect days sometimes?

also mito does not expalin hyperacousia or photophobia really to my mind but this idea does.

Cheers and thatnks agoin for the great link.

Actually problems with temperature are also a symptom of mito disease and you will find if you start researching mito disease sites, it is often listed in the symptoms of mito disease.

It is not uncommon for mitochondrial disease patients to have some abnormal regulation of body temperature, resulting in either a lower or higher baseline body temperature (commonly 96-97 degreees) or a marked inability to tolerate heat or cold.
http://www.mitoaction.org/blog/dysautonomia-body-temperature

and symptoms with mito disease.. often vary too and are not necessarily consistant. The symptoms can actually come and go in mito disease/dysfunction patients...

I guess that all varies with what is going on in their lives at the time eg on a mito affecting drug? or any number of other factors which can impact on the mito at that point of time or moment

Ive no idea thou about if photophobia is often found in mito patients or "hyperacousia" (whatever that is)..