Hot & Sweaty? NO menopause replies PLEASE

[hoops2u]

Hello everybody,

Yes my ear still hurts. And bad. I will see the Dr. soon.

In the meantime, in between time, however, I have asked this question before and I am at it again! Here I sit, reading these posts and threads and all you fine people who help one another so well.

And suddenly I just start sweating. My hair is wet. Mostly my head and neck. I get very hot, similar to a hot flash. I AM NOT MENOPAUSAL.

I am wondering if this is thyroid? If so, what tests do I ask for? I do already get blood tests every 3 months. Kidney functioning I guess and it shows I have need of potassium supplement, slightly high cholesterol, nothing else remarkable. Except my Dr. was concerned I was diabetci, had a 123 glucose, but I had just eaten 1.5 hr before. (or so).

Or, OR, could this be something caused by one ot the meds I take? I am wondering about the choleserol med.? That is ZOCOR? When I skip that Zocor I don't seem to have the problem as much.

I was completely off Zocor all summer and felt great, no hot flashes for the first ime in ages. Whatcha think?

Or perhaps a combo of meds?

I have had to keep the heat turned down to 62 at night and 64 daytime. That is a real compromise for me and still, my "other's" are freezing. Of course the Petrol Co. is really irritated with me as well. Their profits are down. ahhh ahahaha

Thanks Pals,
hoops

Did ya know if some person's brain was made of chocolat, it wouldn't fill an M&M? yep, know anyone like that?

[Buttons2]

Why are you so adament you're not menopausal? Try eating a banana everyday for the potassium. 123 on blood sugar 1 1/2 hr after eating might be too high,can you recall what you ate that day? Also why would a doc take a test knowing you'd eaten? Seems to me you should have had a fasting test.

How high are your cholesterol numbers? Slightly high & you're on Zocor? did your doc bother to mention diet? Niacin?

I'd have to say this: find a new doctor!

Listen to your own body,if you felt good (in summer no less!) off the Zocor,why go back on it?

[Buttons2]

Thyroid testing can be tricky,please post (or read the info) on the endocrine forum. I'm sure someone there will help you. I do know you need more than just a TSH test. T3,T4,T3free,T4free.....I think these are the ones but don't rely on my memory!

[suede]

Boy I can sure relate to that problem, I had though I had it whipped but it has started back up recently.

With me it has been both menopause and meds. I can tell the difference though when it is which one.

When it is hormonal it feels like I am cooking from the inside out literally and when it is the meds I just start perspiring and soak through..

It really bites, i know, wish i had some answers for you but I'm just suffering through it.

Linda

[Boxerlover]

Hey Hoops, I'm not sure of I responded before but I'll get the same thing. I happens sporadically with no notice or pattern. I hate them, they are not my meds or menopause(as I had a full hyster at 19, am 37 now) and I have just accepted they are part of my auto-immune disease although this particular symptom is not listed I have others that are not either. I also get tested out the wazu for all my stuff so I feel confident at this point they are not missing anything. It's like my doc said today when questioning a possible new diagnosis, You have enough!

Melissa

[Mark N]

hoops, I know mine isn't menopause:eek: and I get the hot flashes from Cymbalta. I know it is a common SE so since you didn't have them when you were without Zycor I would say that is the culprit. I have to agree with buttons, if you felt so good without it is there another cholesterol medication that would work for you? I hope you find a solution to this problem as it isn't comfortable.

[slipnslide]

Hoops,

I just started experiencing hot flashes that engulf just my back (Not my chest or belly. Only from shoulders to my low back) and the more severe ones will involve my upper arms. I know it could be menopausal, but after checking with my mom, I am eleven years younger than she was when she started getting hot flashes. Plus, what I experience does not involve my head or face.:confused: Over the past 6 weeks since they started, I've not started anything new. I've been taking Simvastatin (Zocor) for many months, and I just started the Fentanyl patch in the past 4 weeks, so I too am at a loss for what might be triggering them.

For me, sure, it could be menopause, but with the OB/GYNs saying that a good indicator of when you will start menopause is how old your mother was when she started, then I would be 11 years early!:rolleyes:

I wonder if it's a nerve in the sympathetic nervous system being affected somewhere in my body:confused:

Kim

[hoops2u]

Hello my Friends,

Oh thank you so very much for your empathy and feedback. I was thinking perhaps this could be due to the combining of certain meds? You know, like if you use drain cleaner to clean a drain you do not want to then add bleach. Each one, seperately do good work, but together they can have an explosive relationship. Meds do that too.

I have asked my pharmacist for a consultation so that she and I can go over the miriad of medications I pour into this poor old shell. (and my drains are still clogged!haha). This seems to be taking longer than I had hoped. the Parm is quite busy.

Or, also if it could be thyroid issue. I don't know much about thyroid. I know my mother had major thyroid problems as a teenager around the end of the depression. They had her eating raw liver daily (small amounts). in an effort to keep the thyroid in check. She also had a huge growth (goiter?) removed from the thyroid as a teen.
Back then they did this type os surgery in the home. OH YUCKY YUCK YUCK!! nuf said

Button/Pati, I did not want this thread to sink into a long drawn out discussion of menopause.
This condition is just not possible for some of the human species. Others have with much certainty, long ago gone through that phase of their development due to either hysterectomy (which I know does not guarentee menopause), or due to age. A couple of years ago I asked a similar question and the replies kinda got stuck on a new sub-subject of menopause, leaving my question totally left out of the equation. Thanks for asking.
I do eat a diet high in potassium and that is exactly why I am on rx potassium. 3 years ago my potasssium level dropped to fatal. I was in ICU for over a week, touch and go first few days, almost left this Earth place. I haven't a clue why this happens.
And Buttons, finally, as I reviewed my blood test results, the cholesterol was moderately high (the bad) the good was a bit low despite a very good diet I attempt to maintain due to my more sedentary life style since the auto accident. Hope this answers your questions. And, 123 was not considered high at all on blood glucose when the lab and Dr. looked again and realized I had not been fasting. I had not fasted because I wasn't going in for anything other than to test the potassium level again to be sure it was still low even after pumping hi-potassium food. I called ahead and was told not to fast. It was, thanks....

Again, thank everyone so very much. You are all the best....
hoops

[Lil E]

I get the sweating just on my head. The meds can mess with your hormones just enough to cause problems but not show up on tests. Subclinical I believe. Also people like us tend to have low vitamin D. I take 1,000mg of D3 twice a day, kelp for the thyroid, again something that could be present but not register, B12 complex, contains all the B's plus minerals and E.

There was an article about the vitamin D that even healthy people don't get enough because of skin cancer fears. The 1,000 to 2,000 mg was recommended for everyone.

[Kathi49]

I mainly sweat in the chest area and back of the neck. But I attribute it to being post menopausal and the meds. I suppose if I slapped back on my old hormone patches it would stop. But it only happens maybe twice a day and maybe a couple of times while sleeping. But I just live with it. I know it is not my thyroid because I have had plenty of tests done...of all kinds. The only things that were slightly elevated were the ANA and Cholesterol and that's it.

[Kira]

I am not saying that you have (or don't have) autonomic dysfunction... but I get similar symptoms from my autonomic dysfunction (which is from my mito).

My autonomic dysfunction gives me problems with body temperature regulation... I get fevers (usually 99-101 F) for no reason (no infection, inflammation, etc). The fevers last a couple of hours and then go away on their own. This generally happens along with other autonomic symptoms and usually during a mito flare. I get really red/flushed, my skin is hot to the touch, and I get sweaty. If I check my temperature while feeling this way, I may or may not have a fever... my body temp doesn't always go up with these "episodes."

The body temperature stuff is only a small part of my autonomic dysfunction. It also affects my heart rate, blood pressure, body temp, GI motility, etc... plus it causes a lot of weird sensations/symptoms.

Everyone's heart rate goes up sometimes... everyone gets fevers when they are sick... everyone gets red, flushed, sweaty skin when it is hot or when they exercise, or pale, cool, mottled skin when it is cold... The difference in autonomic dysfunction is that these things happen when they aren't supposed to happen, they happen more intensely than they are supposed to, etc...

I didn't want to make it sound like I think you have (or don't have) autonomic issues... just that I know that I get a similar sensation from my autonomic issues.

(BTW, I am also NOT menopausal... I am in my 20s) :)

[Buttons2]

I brought up the menopause because I was on Premarin in my 30's. I stopped taking it when 40 & never had another period since! Weird huh?

You might try taking niacin rather than any type of satin drug,ask your doctor. There are people that "flush" from taking niacin but there are products made to prevent this.

Actually,this just made me recall how so many of the doctor's I saw over the years wanted to blame my early menopause for everything except hangnails!

[Nana4&cntn]

Kathi, I also sweat or get dewy as a lady would say. LOL Seriously I sweat at night in the same areas you do and have been doing it for several years. Mine is absolutely not menopause as I had a hysterectomy at 25 and immediately went into menopause a few hourrs post op.

I has asked my docs about it and they don't have a clue as to why. I refuse to go back on the patch or premarine or what ever. I have looked into the problem and some hormones in the body, like thyroid, adrenals etc may play a part.

Good luck to you, I just take it as it comes!

Kathy

[hoops2u]

Hey, thanks everybody.

I just noticed something. I have not taken my potassium rx today and have not had a single one of those horrible hot flashes.

And they just weren't hot, profusely sweaty, but several times an hour. Plus, afterward, I get very cold, shivers and need to put an overshirt on or a cover-up of some kind.

Geesh, since Potassium regulates the heart and I was just a little short, I gotta think that is the culprit. I am a bit afraid to mess around with the potassium too much, but on the other hand, too much could very well be causing High Blood Pressure. Eh what?

I am going to ensure I consume plenty of hogh volume potassium foods for the next few days and skip the capsules. I had an appt. w/my Dr. today but cancelled. ahem. It was ummm, oh, yeah, car issues. Shame on me. Surely the short break was appreciated, or the chance to spend more time w/others/ or to squeezwe in one who is really sick.

I just love ya'll. Bless you, Dear Friends,
hoops

And remember all typo's and msispellings are done for your amusement.

[norcalmom]

I have a smiliar problem as well and I have tried to log when it happens the most with me. It always seems to be the worse when its "that time of the month" or when I get very emotional. I am not menopausal yet, but my doctor told me it is a sympathic problem ( I think that is how you spell it). I also feel extra sensitive to touch along with other issues. I thought it could be because I am on the fentanyl patch and maybe it was part of withdrawls, but it only happens at certain times of the month. I am back on the patch and the sweating issue hasnt been a problem for me for a while.

I was never one who would perspire so this problem was new to me. It is very embarrasing because I would talk to someone and suddenly break out in sweat and then I become more self conscious and perspire more.

I have high cholesterol but not on any meds because my numbers are not high enough. I plan on having lab work done soon and get a work up on the cholesterol, thryoid and also my hormones. I just hope I am not going through menopause because my mother was all over the place when she was going throught the "change" and having all my medical issues now, I dont think I could handle something else on my plate.


I thought I was the only one with this problem; it is very interesting to hear that others have similar problems.

patty

[hoops2u]

Kira,

What is autonomic dysfunction? Your answer is the first time I have gotten an answer that sounded more like the symptoms I am experiencing. And how is this diagnosed? Also, forgive me for my ignorance, but what is Mitochondrial Disease?

I do know that my symptoms lessened just a little when I stopped taking my Potassium supplement Rx and also if I do not take my Rx for hi cholesterol. I am still feeling hot and sweatty but not AS bad as when I take these two meds.

I have been waiting to have a conference with my pharmacist to discuss all the meds I do take and their affects on my system, but she has been so busy due to staff being off for one reason or another. So, it has been 2 months since I asked for the conference. I'm going to request a conference with Pharm Steve. I really like him and he always has good input. So does Mrs. Doubtfyre.

Thanks to Mrs. Doubtfyre I am able to eat nightshade vegetables again as well as some other things. She is brilliant w/re.: to holistics combined w/Rx.

Thank you so much for your help. You can go to my profile and email me privately if you prefer. That would be fine with me.

God Bless You,
hoops




I am not saying that you have (or don't have) autonomic dysfunction... but I get similar symptoms from my autonomic dysfunction (which is from my mito).

My autonomic dysfunction gives me problems with body temperature regulation... I get fevers (usually 99-101 F) for no reason (no infection, inflammation, etc). The fevers last a couple of hours and then go away on their own. This generally happens along with other autonomic symptoms and usually during a mito flare. I get really red/flushed, my skin is hot to the touch, and I get sweaty. If I check my temperature while feeling this way, I may or may not have a fever... my body temp doesn't always go up with these "episodes."

The body temperature stuff is only a small part of my autonomic dysfunction. It also affects my heart rate, blood pressure, body temp, GI motility, etc... plus it causes a lot of weird sensations/symptoms.

Everyone's heart rate goes up sometimes... everyone gets fevers when they are sick... everyone gets red, flushed, sweaty skin when it is hot or when they exercise, or pale, cool, mottled skin when it is cold... The difference in autonomic dysfunction is that these things happen when they aren't supposed to happen, they happen more intensely than they are supposed to, etc...

I didn't want to make it sound like I think you have (or don't have) autonomic issues... just that I know that I get a similar sensation from my autonomic issues.

(BTW, I am also NOT menopausal... I am in my 20s) :)

[Kira]

Mitochondrial Disease is a relatively rare genetic disorder of metabolism that makes your cells unable to properly metabolize food into energy. Mitochondria are essential parts of nearly every cell in the body, and one of their major functions is to make energy from metabolism of food. They do this via a complex series of chemical reactions that ultimately creates a molecule called ATP. ATP is used by cells as the energy source that powers most of the things cells need to do to stay alive & function. So... if mitochondria don't work, then cells don't have enough energy (ATP) to function... which means that the organs made up of those cells don't work... and so on. Also, because things aren't metabolized well, molecules that weren't metabolized normally can build up in your body/bloodstream, which can cause further damage and make you feel sick.

Because mitochondrial metabolism is so complex, there are a lot of different genes that can be mutated & cause mitochondrial disease. One main area where things can go wrong is called the Respiratory Chain ("respiratory" meaning the metabolic process of cellular respiration, NOT breathing). The Respiratory Chain is a series of metabolic steps that ultimately result in ATP (energy) production, and the "steps" that make it up are done by Complex I, II, III, IV, and V. Mutations/deficiencies of these Complexes can cause mitochondrial disease. I have a deficiency of Complex I, with a mutation in a Complex I gene called NADH Dehydrogenase 5 (ND5). I also have secondary deficiencies of Complexes III and IV, plus secondary issues with fatty acid oxidation.

Mito symptoms are as varied as the types of cells in our bodies, because mitochondria are needed for almost every cell type to function/live. In general, mito tends to affect the organs/tissues with high energy requirements, like the nervous system (central, peripheral, autonomic, etc), muscle, endocrine system, heart, part of the kidneys, nerves & muscles that control GI function, etc. There are some complexities with how mitochondrial genes are inherited & how cells replicate that cause some quirks with the way mito affects different organs/tissues in different patients... basically, you can have the same mitochondrial mutation/disorder but have very different symptoms. I could go on about mito for a long time, but I think I've babbled enough about it already... if you are curious about mito, a good source of info is the United Mitochondrial Disease Foundation's website (www.umdf.org (http://www.umdf.org)).

That said, I didn't mean to imply that I think you have mito... Mito is pretty rare. The autonomic dysfunction issues I have are likely caused by my mito, but autonomic dysfunction can be caused by a LOT of things besides mito. Autonomic dysfunction is just when the autonomic part of your nervous system doesn't work normally... so all sorts of different things that can affect nervous system functioning could potentially cause autonomic problems.

The autonomic nervous system controls a lot of your body's basic functions, like heart rate, blood pressure, temperature regulation, GI motility, etc. There are two major divisions of the autonomic nervous system: the sympathetic nervous system and the parasympathetic nervous system. They counter each other & keep things in balance... both have to work right. The sympathetic nervous system does the things you would think of with the "fight or flight" response, or an "adrenaline rush"... speeds up the heart rate, makes the heart muscle contract harder, raises blood pressure, etc. The parasympathetic nervous system does the opposite... kind of calms everything back down... decreases heart rate, lowers blood pressure, and so on.

The flushing, feeling hot, sweating, etc CAN be an autonomic thing (too much sympathetic nervous system activity), though autonomic dysfunction is not the only thing that causes it. For me, we think it is one of my symptoms of autonomic dysfunction, but I have a lot of other autonomic issues, too. One major autonomic issue I have is heart rate. I am on a med for that now (atenolol, a beta-blocker)... but without atenolol, I have these spikes in my heart rate where it will just plain go fast (120-160 bpm) for no reason when I am resting and even sleeping (my resting heart rate is pretty high, too, when I'm not on atenolol). My cardiologist had me do a Holter monitor to rule-out arrhythmias, and we saw that I was having a lot of those "spikes" in heart rate. Also, I have a lot of orthostatic changes in heart rate... meaning that my heart rate changes a lot when I change from laying to sitting to standing etc. It is normal to have a little change initially when you first lay down or get up, but mine changes by a lot (typical for me would be to go from 80 bpm seated to 120 bpm standing or something), and it stays that way for a while after I lay/sit/stand.

A lot of people get orthostatic changes in heart rate & BP when they are dehydrated, but this happens to me even when I am well-hydrated.

My blood pressure also fluctuates a lot, though that is also more stable now that I am on the atenolol. I don't have high blood pressure (it's pretty low now that I'm on the atenolol, which is expected)... but it would shoot up when I was sick or when I was having the rapid heart rate or whatever, and would also be too low sometimes. I get positional changes in my BP, like I do with heart rate.

I have issues with temperature regulation, too. Part of this might be a mito thing because it is very common to have heat &/or cold intolerance with mito. One weird thing that happens is that I get fevers for no reason when I am not sick, it is not hot out, I am not overexerting myself, etc. I will just start feeling feverish out of nowhere, and when I check my temperature I will have a fever. They are never super-high fevers (usually 99-101 F), but they are fevers nonetheless. The fevers last anywhere from 30 min to a few hours... typically about 2 hrs. It is very weird.

When it is hot out or when I do even minimal amounts of exertion, my body temperature also goes up sometimes. I don't know if that is a mito thing (heat intolerance) or an autonomic thing (not regulating my body temperature well)... I have similar trouble with cold temperatures, but not as bad. I have a LOT of trouble with heat, even when it is only a little warm out (mid/upper 70s) or even with mild exertion.

I get the flushing, red/hot skin, and sweating when I have the fevers or am overheated, but also sometimes get it out of nowhere on its own.

I have a lot of other weird sensations related to my autonomic issues. One thing I get is this "adrenaline rush" feeling, like when you are driving and narrowly avoid getting into an accident... it comes out of nowhere & nothing has to happen to trigger it... there is not a mental/anxiety thing going on when it happens or anything. Instead of lasting a seconds/minutes like a "normal" adrenaline rush, though, it can last a long time (minutes/hours) and is really intensely uncomfortable. For a long time I thought it was some kind of mental/anxiety thing even though there really is no mental piece to it for me. But now we have seen that it happens when my other autonomic stuff is acting up, plus it usually happens when my mito stuff in general is really bad (and the mito stuff is a major trigger for my autonomic stuff). Plus, I tried various mood/anxiety meds in the past and nothing helped... some made it worse... but, interestingly, my beta-blocker really helps with this. I get a LOT fewer of these "adrenaline rush" episodes now that I am on the beta-blocker, and the ones I do get are much less intense. My doctors (psych, therapist, 2 neuros, 2 metabolic/mito docs, PCP) all think this is an autonomic/mito thing for me, not a mood/anxiety thing... but it took a while to get to that point since they do like to blame everything on mood when you are a young woman.

You asked how I got diagnosed with the autonomic dysfunction and I guess that for me it wasn't really one thing that gave me the diagnosis. It was more that the whole picture looked like autonomic dysfunction. I think my cardiologist was the first one that actually started calling it autonomic dysfunction (before that, they were just kind of listing all of the symptoms/diagnoses separately, like "tachycardia, labile BP, heat intolerance, unexplained fevers, blah, blah, blah"). They can do tests specifically looking at various autonomic issues, like tilt table testing... I am not sure if/how they would test for the flushing/sweating/hot symptoms or if they would just talk to you about it. Plus, unless there is something I haven't heard of, there doesn't seem to be much of anything they can do for it. My beta-blocker helps with my heart rate & BP issues, but doesn't do anything for the temperature stuff. Some people do fluids, etc... though I think that is also for the BP issues.

When I get those flushed/hot/sweaty episodes, the only thing that really helps is to do stuff to cool off. The same things you would do in summer if you were overheated, or if you had a fever. Cool washcloths, cool clothing, cool shower, air conditioning/cool room if it is hot out, cold drinks, popsicles/ice, etc. Nothing too exciting, all very simple, but it does at least help me feel more comfortable. Plus, I figure that if my body isn't cooling itself down properly on its own, then maybe I have to help it do that...

This is a really long post... Honestly, I don't know if you have autonomic issues or not, but I hope that whatever it is you can figure out what's going on and hopefully feel more comfortable.

[mrsdoubtfyre]

Hoops, you can PM me with your drug list. I'll research it for you.

As far as mito issues go... I have two comments.

1) vaccines are showing up recently as triggers for mito damage. This is being revealed in the autism community. The general thought so far is that people are born with some weakness or vulnerability and the vaccine somehow exaggerates that.

2) The statin family of drugs have recently been found to damage mitochondria.
In fact many drugs have this potential.

http://www.rsc.org/chemistryworld/News/2008/February/25020801.asp

The drugs used to treat HIV have been known to do this for about a decade now:
http://www.atdn.org/simple/mito.html

http://aaemonline.org/blog/category/mitochondrial-dysfunction/

In fact common antibiotics may do this:
http://www.autism.com/medical/research/advances/autism-mitoantibiotics.htm

I think the new research coming from the autism community will be a big help for others who have acquired mito damage.

[Kira]

Interesting info... My mito is genetic (mutation in a Complex I gene called ND5 for NADH Dehydrogenase 5).

There are drugs that interfere with mitochondrial function, and people with mitochondrial disorders are supposed to avoid those meds. For example, I cannot take depakote because it interferes with fatty acid oxidation & depletes carnitine, so it is contraindicated in my disease. I can't take Topamax b/c it worsens my existing metabolic acidosis, since I have type 2 renal tubular acidosis from proximal renal tubule dysfunction secondary to my mito. There are other AEDs that are contraindicated in mito as well, but I can't remember which ones. When I have general anesthesia, they have to avoid certain anesthesia meds (basically the same list as malignant hyperthermia) because of my metabolic myopathy. I got VERY sick from propofol & succinylcholine a few years ago... triggered a significant mito flare for me, but we didn't know I had mito yet and so didn't know to avoid those drugs. In terms of antibiotics, I know that I cannot have aminog*****ides (gentamycin, amikacin, streptomycin, etc), and I ask my mito doc before taking any antibiotics that I haven't used in the past. I know that I cannot take statins due to my myopathy & recurrent rhabdomyolysis... plus, the CoQ10 depletion caused by statins would be a very bad thing for me since CoQ10 is directly involved in the step of mitochondrial metabolism that is broken in me and I am on super high daily doses of CoQ10 as it is (1600 mg/day). There is a list of HIV meds that patients with mito should avoid. There are chemotherapy drugs that are contraindicated in mito... I know that Adriamycin (doxorubicin) is one. Even things like Lactated Ringer's solution (IV fluids)... that one is theoretical & is b/c it containes lactate, which they don't want to give mito patients b/c we already often have elevated lactate/lactic acidosis. There are probably other meds to avoid as well, but I can't think of them off of the top of my head. It definitely complicates things when we get sick.

Re: vaccines & mito... one thing I KNOW about mito is that we do not tolerate physical stressors, including minor illnesses (like colds) & fevers & such... so, even if the vaccines themselves are not triggering mito... in people with underlying mitochondrial dysfunction (diagnosed or not), the fever & minor physical stress from getting a vaccine can be enough to trigger a "mito flare"/exacerbation & the resulting metabolic crisis. Any time we get a mito flare, there is the potential for decompensation, deterioration, and ending up with a new, lowered baseline.

In terms of acquiring actual mito... I don't know... this may be a semantic thing, but I think of "mito" as meaning an actual mitochondrial disorder, referring to having a broken step of mitochondrial metabolism (oxidative phosphorylation/respiratory chain and related things, like the pyruvate disorders)... those are inherited things or occasionally spontaneous mutations.

Anyway, I don't mean to hijack the thread... interesting points, though.

I did want to empasize again that I don't have any reason to think that hoops2u has mito, and didn't mean to make it sound like I did... The symptoms I get that are similar to hers are from my autonomic dysfunction, which can be caused by a LOT of things besides mito (things that are more common than mito). The mito itself isn't directly causing those symptoms for me... one of the complications/effects of my mito is that parts of my nervous system don't work, including the autonomic stuff.

[hoops2u]

Kira

I am ever so grateful for all the information. I have been suffering for a very long time with these symptoms and just as I thought I had finally conquered a big part of my problems, I came crashing down like cement flippers on a diver. As I think back and read through my journal, it all started with my flu vaccine. It's starting to make some sense to me. I have wanted to see a specialist for some time now because my GP is just not listening to me. (I just read an article that the closer you are in age to your Dr., the less likely they are to communicate well with you/listen to you/empathize, etc.) We are the exact same age.

Anyway, where do I start? Would that be an endocrinologist? I would like to get a good idea of what is going on. And interestingly enough, I am on Topomax. As I have been reducing my dosage I have less symptoms. In the past I was also on Neuronton. That was the worst for me and they had me on 3600 mg 3 times a day. I was a zombie, totally. An ambulance chaser on TV was saying once about a yr. ago, "if you are/someone you know, taking neurontin, call us to talk about a class action suit. Some
deaths involved. Well, I am opposed to suing as a mode of living, so didn't contact, but I did ask my Dr. to take me off neurnontin. She said I needed it. Soooo, I began to titrate myself down and off. I felt, eventually, wonderful!! Went to see Dr. for reg. 3 month check-up and when she asked how I felt I said really GREAT! When she asked why I thought I felt so good I told her I titrated down the Neurontin. She said that's good, maybe you should go off it completely. BRILLIANT! doncha think? ahem tsk tsk....

Now then, back to you Kira, Oh thank you, thank you. I don't know that I have what you do either, but what you wrote sounded like I could have written it. The last time I took an antibiotic I got so deathly sick, I wound up in ICU for a week. Now, I have to take great care when ever I take an antibiotic. Like, dentists often like to give them, that is who had given me the one when I got so sick. And with anesthesia, that's a real scarey story, to long to tell here.

Also, I have pretty much no resistance to anything. Sneeze at me and I am down for the count. I won't let anybody around that 's ill. And I do get those fevers. The rapid heartbeat, thachycardia type, ven had extensive heart tests done (chemical stress test), just this past yr. I could go on and on, but you don'tneed that. I will check out the site you sent.

I only wish I knew more of what you speak of such as: aminoglysosides, statins, CoQ10, Lactic acidosis? I know I keep experiencing a drop in Potassium. The first time that happened it was so low I almost croaked. Had to be in CCU for a week to build up enough through IV's, then in the hospital another week and on Potassium.

Kira, thank you so much. I wish I could do something for you! You're the best. I will keep you posted. I'm not on everyday, but do try to check things out regularly.

If you have the time and want to contact me privately you can go to my profile and I would be way, way happy to learn all you wish to share. I do appreciate you taking the time. I am so sick of being sick and tired of being tired. I'm sure you know what I mean.

My best prayers to you,
hoops

Interesting info... My mito is genetic (mutation in a Complex I gene called ND5 for NADH Dehydrogenase 5).

There are drugs that interfere with mitochondrial function, and people with mitochondrial disorders are supposed to avoid those meds. For example, I cannot take depakote because it interferes with fatty acid oxidation & depletes carnitine, so it is contraindicated in my disease. I can't take Topamax b/c it worsens my existing metabolic acidosis, since I have type 2 renal tubular acidosis from proximal renal tubule dysfunction secondary to my mito. There are other AEDs that are contraindicated in mito as well, but I can't remember which ones. When I have general anesthesia, they have to avoid certain anesthesia meds (basically the same list as malignant hyperthermia) because of my metabolic myopathy. I got VERY sick from propofol & succinylcholine a few years ago... triggered a significant mito flare for me, but we didn't know I had mito yet and so didn't know to avoid those drugs. In terms of antibiotics, I know that I cannot have aminog*****ides (gentamycin, amikacin, streptomycin, etc), and I ask my mito doc before taking any antibiotics that I haven't used in the past. I know that I cannot take statins due to my myopathy & recurrent rhabdomyolysis... plus, the CoQ10 depletion caused by statins would be a very bad thing for me since CoQ10 is directly involved in the step of mitochondrial metabolism that is broken in me and I am on super high daily doses of CoQ10 as it is (1600 mg/day). There is a list of HIV meds that patients with mito should avoid. There are chemotherapy drugs that are contraindicated in mito... I know that Adriamycin (doxorubicin) is one. Even things like Lactated Ringer's solution (IV fluids)... that one is theoretical & is b/c it containes lactate, which they don't want to give mito patients b/c we already often have elevated lactate/lactic acidosis. There are probably other meds to avoid as well, but I can't think of them off of the top of my head. It definitely complicates things when we get sick.

Re: vaccines & mito... one thing I KNOW about mito is that we do not tolerate physical stressors, including minor illnesses (like colds) & fevers & such... so, even if the vaccines themselves are not triggering mito... in people with underlying mitochondrial dysfunction (diagnosed or not), the fever & minor physical stress from getting a vaccine can be enough to trigger a "mito flare"/exacerbation & the resulting metabolic crisis. Any time we get a mito flare, there is the potential for decompensation, deterioration, and ending up with a new, lowered baseline.

In terms of acquiring actual mito... I don't know... this may be a semantic thing, but I think of "mito" as meaning an actual mitochondrial disorder, referring to having a broken step of mitochondrial metabolism (oxidative phosphorylation/respiratory chain and related things, like the pyruvate disorders)... those are inherited things or occasionally spontaneous mutations.

Anyway, I don't mean to hijack the thread... interesting points, though.

I did want to empasize again that I don't have any reason to think that hoops2u has mito, and didn't mean to make it sound like I did... The symptoms I get that are similar to hers are from my autonomic dysfunction, which can be caused by a LOT of things besides mito (things that are more common than mito). The mito itself isn't directly causing those symptoms for me... one of the complications/effects of my mito is that parts of my nervous system don't work, including the autonomic stuff.

[hoops2u]

That is if you promise as always, to try and speak English. I didn't do well at all in Chem., just passed and got on with my life. I thought at the time, what the H soes a shrink need with Chem. & Trig? Wish I'd have paid more attention now. Fortunately I did listen to my Dad who was a great investor. He said "buy dirt, they aren't making any more of it." He was right. Ahhhh hahaha.

So, I will contact you privately, thanks. I am also in touch with "Pharm Steve.

I am still using the Alka Seltzer. And like you, the store brand works just as well. Geez, Being an Italian, I thought I was doomed forever tobe banned from all family dinners. Uncle "Fat's" was none to happy when I didn't show up for :dinner". ahem. Alas, I can now consume night shade veggies in moderation, as I do the red Wine. mmmmm.

Thanks again, you will be hearing from me soon as I get my act together. I need to make an updated list.

Boss is home now, Thanks Doc!
hoops

Hoops, you can PM me with your drug list. I'll research it for you.

As far as mito issues go... I have two comments.

1) vaccines are showing up recently as triggers for mito damage. This is being revealed in the autism community. The general thought so far is that people are born with some weakness or vulnerability and the vaccine somehow exaggerates that.

2) The statin family of drugs have recently been found to damage mitochondria.
In fact many drugs have this potential.

http://www.rsc.org/chemistryworld/News/2008/February/25020801.asp

The drugs used to treat HIV have been known to do this for about a decade now:
http://www.atdn.org/simple/mito.html

http://aaemonline.org/blog/category/mitochondrial-dysfunction/

In fact common antibiotics may do this:
http://www.autism.com/medical/research/advances/autism-mitoantibiotics.htm

I think the new research coming from the autism community will be a big help for others who have acquired mito damage.

[mrsdoubtfyre]

Here is a very easy to understand article about mitochondria.

As luck would have it...the magazine was just delivered to us yesterday.
(we have taken this magazine for 40yrs!)

http://www.sciencenews.org/view/feature/id/40762/title/Mitochondria_Gone_Bad

Today, scientists suspect that millions of people may be suffering from mitochondria gone awry, in more subtle but nonetheless insidious forms. Evidence suggests that malfunctioning mitochondria could explain Alzheimer’s disease, Parkinson’s, diabetes, cardiovascular disease, obesity, cancer and other consequences of aging. Given the organelle’s core function in the body, some think mitochondria might even be the biological epicenter of aging itself: If you live long enough, all your cells might experience a kind of energy crisis. “I strongly believe that mitochondrial metabolism is the key to aging,” says Hemachandra Reddy of Oregon Health & Science University in Beaverton....
In a move that will push mitochondria studies further into the mainstream, this year the National Institutes of Health has put aside grant money to encourage more mitochondria research, hoping to “transform our understanding of the role of this critical organelle in human health and disease,” according to the funding announcement. Already scientists have found clues that link defects in mitochondria to Alzheimer’s disease, Parkinson’s, heart failure and other breakdowns in the body that come with age.

This quote is just a snip...it is a nice article with a good diagram of a mitochondrion so you can visualize the text better.

[Rozia]

Hoops how old are you?

[Kira]

Here is a very easy to understand article about mitochondria.

As luck would have it...the magazine was just delivered to us yesterday.
(we have taken this magazine for 40yrs!)

http://www.sciencenews.org/view/feat...ndria_Gone_Bad (http://www.sciencenews.org/view/feature/id/40762/title/Mitochondria_Gone_Bad)

Quote:
Today, scientists suspect that millions of people may be suffering from mitochondria gone awry, in more subtle but nonetheless insidious forms. Evidence suggests that malfunctioning mitochondria could explain Alzheimer’s disease, Parkinson’s, diabetes, cardiovascular disease, obesity, cancer and other consequences of aging. Given the organelle’s core function in the body, some think mitochondria might even be the biological epicenter of aging itself: If you live long enough, all your cells might experience a kind of energy crisis. “I strongly believe that mitochondrial metabolism is the key to aging,” says Hemachandra Reddy of Oregon Health & Science University in Beaverton....
In a move that will push mitochondria studies further into the mainstream, this year the National Institutes of Health has put aside grant money to encourage more mitochondria research, hoping to “transform our understanding of the role of this critical organelle in human health and disease,” according to the funding announcement. Already scientists have found clues that link defects in mitochondria to Alzheimer’s disease, Parkinson’s, heart failure and other breakdowns in the body that come with age.
This quote is just a snip...it is a nice article with a good diagram of a mitochondrion so you can visualize the text better.


All very interesting stuff... Mitochondria are involved in a lot more aspects of common diseases than was previously thought. This has been talked about more & more in the mito world. Hopefully this will mean more interest in mitochondrial research, which will hopefully lead to some kind of useful answers for those of us with primary Mitochondrial Disorders. The problem with primary Mitochondrial Disorders is that they are relatively rare AND underdiagnosed, and so research has been limited & they just don't know much about how to help us. If there is growing scientific interest in mitochondrial function because it is implicated in all of these other diseases... then maybe a nice "side effect" of that research will be that they figure out something that can help those of us with primary Mitochondrial Disorders.

The mitochondrial dysfunction they are seeing in these diseases & from drugs/toxins is different from primary Mitochondrial Disorders ("Mito").

For info on Mitochondrial Disorders, some great sources of info are the United Mitochondrial Disease Foundation (UMDF) website www.umdf.org (http://www.umdf.org) and the Mitochondrial Disease Action Committee (MDAC) website www.mitoaction.org (http://www.mitoaction.org).