Lovebug

Hi lieze,

I think this illness could DEFINITELY cause all the feelings you are having. Think about it, being so affected by a chronic illness could make anyone depressed or angry. But the "explosiveness & extrem anger" that you are referring to is something I get at times as well. Not to mention I sometimes have crying spells. The only thing I can say is this: our autonomic nervous systems controls all our hormones which, in turn, control our moods. I think this is where the connection lies.

Distraction! I have no clue if this would work but what if he put on headphones and listened to calming music during a storm? I'm assuming you didn't lose electricity but just to be safe, you could get him a battery operated walkman. I can somewhat relate to being so jumpy b/c I get that way but my adrenal attacks are under control with my beta blocker.

I pray he gets better!

I am growing two adrenal tumors,

Why don't they remove the tumors? Why let them grow & "watch them"?

He said in his most gentlemanly southern drawl ( he is a wonderful, older man), "well, its like adding salt to beans...you've got to go slow so you don't add too much". It is my favorite line from him ever.

My doc is the same way. He always says "slow & low" with meds. He starts me on a pediatric dose and then lets me increase it in extremely small increments (if at all). He also advises me to stay away from the medical profession (especially ER) b/c he says they will "mess you up". They just don't have the knowledge to treat us.

I had a laproscopy for endometriosis in the middle of feeling miserable and just before my diagnosis. As a matter of fact, my GYN thought my abdominal pain & diarrhea would significantly improve due to the surgery. Well, I did fine after surgery but (according to my husband) I was only in the OR for 15 minutes. I'm sure it was a little longer than that but it apparently wasn't very long. Anyway, just make sure you trust your MD and that he/she makes the nurses aware that you need extra fluids & closer monitoring due to your condition that can make vital signs go haywire. After my symptoms didn't improve, and 4 months later when I developed orthostatic changes, my GYN sent me to my current cardiologist that treats my Dys. Good luck to you and I'll definitely say a prayer for you!

Am I the only one a little scared they're pushing pacemakers for POTS? Maybe I'm off base but dysautonomia isn't a cardiac desease, and putting in a physical control on your heart when your autonomic nervous system is sending all the crazy signals....doesn't seem like a good idea. It might be helpful for some, but overall I don't think it sounds like the right way to go.

My cardiologist, whom also treats my Dys, told me my HR could get in the 30's and he would not worry. He said I'd feel horrible but I'd be OK.

Also, why wouldn't an endo be concerned if BOTH cortisol/ACTH were high or low since they are supposed to be inverse of each other?

Good question! Those voters must have seen a couple of endos I've been to!

Lovebug, you and I seem to have a very similar problem. I did initially put on abdominal weight, and as I've lost weight, that's still the last place to lose. I also having increasing facial hair, don't sleep, and need a calm environment. It's like I am a mixture of Cushing's and Addison's. The body looks Cushing-type, but it behaves like an Addison's-type.

Maybe it's a South Louisiana "thang"...LOL! I've also developed abnormal menstrual cycles as of late. For example, my last dot ended around Easter. I spotted twice since then and started my dot again yesterday. It's almost as if I've never stopped this month! I am going to my Dys doc at the end of this month & end of June. I may need to make a trip to my GYN. But I can tell you this, something is wrong hormonally and that is what affects my Dys symptoms. This gets so frustrating! UGH!!!!!!

I wonder if the ones with the high cortisol/ACTH have correlating high BP (like me) whereas those with low levels have low BP? Also, why wouldn't an endo be concerned if BOTH cortisol/ACTH were high or low since they are supposed to be inverse of each other?

Regarding the Cushing's symptoms, I have noticed changes but they can be sporadic. For example, I've noticed more facial hair. I've gained weight in my midsection but that is likely b/c I eat yet don't do strenuous exercise. I have trouble sleeping and I often have periods of time where I feel very antsy, as if my muscles are ready to burn some energy yet I'm exhausted...the old "wired but tired" analogy.

I have had abdominal pain for 3 weeks straight now! Just came out of nowhere! I was hospitalized 2 weeks ago and they ran a bunch of tests but never found anything. Been taking all sorts of different meds to try to attack the pain but nothing helps. I know there are relationships between pots and abdominal pain but I need to be more educated on what it could be. ANy info is helpful. thanks.

YES! I've had abdominal pain for the longest time, like years. But most recently I had it constantly for about a year. Like you, I was tested and diagnosed with IBS (which I already had). Do you have any symptoms that accompany it such as diarrhea, nausea, vomitting, weight loss? I lost a bunch of weight and would get low potassium when I had bouts of diarrhea. My Dys doctor put me on Celexa (SSRI) and it helped. After about a month the pain started creeping back so I upped my Celexa and I've been doing so much better since November. Maybe talk with your doctor about trying that....start SLOWLY!!!

Does anybody know what kind of doctor takes care of Chronic Fatigue? Do you need a doctor? Say everything or almost everything has been ruled out of a serious nature.....wondering who 'likes' CFS patients and sees them on a regular basis - is a particular discipline?

Well, CFS was, & may be still be in some circles?, called Chronic Mono. So given your history it seems like there could be a relation. I never had mono before but when I got sick, I experiencced the same debilitating fatigue that you mention, as well as had an extremely high EBV titer. It only lasted a few months for me and then I went into POTS & fibro symptoms. At one point when I got so bad I considered going see Dr. Cheney for the CFS. He is an expert but is very expensive, doesn't take insurance, & has a waiting list. Or there is Dr. Lapp who used to be a partner of Cheney's. I believe both of them are located in North Carolina.

What's strange is that I don't really exhibit signs of MCAD. I'm sensitive to smell but do not get rashes or flushing from things. However, I have an on & off sore throat with lymph nodes swollen. I never run a fever although sometimes my skin can feel hot (this is fleeting). I also don't really get "sick" anymore. At least not the typical sickness of a cold or stomach flu. I have Dysautonomia/POTS sick days (had one today) but that's it.

I've never had a saliva test for Cortisol but wonder what my levels would be. I agree about the messed up hormones...I'm starting to have spotting between my "dots" so I guess I'll be making another appointment with my GYN soon! Yes, the ACTH which was low was after the suppression test. I would question the way this particular lab handles specimens though b/c it is a very small satellite location for Quest with only 2 lab technicians. I still was curious as to why I'd be walking around with high Cortisol (indicated by the very first plasma result)...

Thank You both for your input!

Lovebug, I added in a "high" category, so you can take it. You should have had a dex-suppression test for the high cortisol to see if it was from an adrenal or a pituitary source. Did they ever re-test you?

I'm going to do what Dana suggests and just post my results with normals in parentheses.

7/14/10 Magnesium 2.0 (1.5-2.5) Normal

Total Cortisol am 26.7 (4-22) High

ACTH, plasma 79 (5-27) High

IGF I, ECL 119 (64-334) Normal

Metanephrines <25 (<57) Normal

Normetanephrine <25 (<148) Normal

Total Metanephrine <50 (<205) Normal

The Endo's response to the above was the following: Normal except 1)ACTH 2)Cortisol = please do #1. 24 hr urine free cortisol & creatinine #2. Dexamethasone Suppression Test

My results were to that were:

8/4/10 ACTH, plasma <5 (5-27) Low

Cortisol 1.6 (4-22) Low

ACTH, plasma 18 (5-27) Normal

Cortisol, Free 24hr urine 23.4 (4-50) Normal

Creatinine, urine 1.32 (0.63-2.50) Normal

Total Urine volume: 3550 (obviously I was fluid loading, LOL)

The Endo's response was to the above: Good normal 1.0 mg Dexa suppression test, no cushings, no excess steroid, normal pituitary-adrenal axn

Hi Sue!

I couldn't complete your poll b/c you didn't have the option of "I have been tested for Cortisol and it was high". I was tested last summer with high results. The endo then ordered a ACTH stimulation test thinking I had Cushings. Well, that came back negative. When I asked the chic that called me with the results what I needed to do about my high cortisol she just said, "he didn't say anything". So I just said "Oh well". But I often feel like I could crawl out of my skin and real antsy. I wonder if it is due to high cortisol (stress hormone)...? It happens a lot in the mornings. Anyway, I want all of my hormones tested extensively b/c I know I could feel better than I do now. My symptoms always get worse around my "dot" so either my hormones make my symptoms worse or my Dys whacks out my hormones (the chicken & egg argument). I hate all this!

Yea Naomi I agree. I started with a change in my IBS (bad abdominal pain & diarrhea when I had always had constipation). Then came the extreme & overwhelming fatigue where it felt almost impossible for my body to keep myself alive. I had surgery for endometriosis in the middle of all this and my GYN said she'd test me if I wasn't better after recovering. She expected a change in my diarrhea, abdominal pain, & fatigue. Well.....didn't happen. She tested me and found extremely high EBV levels (although I was negative for CMV). My primary then said that I had fibromyalgia/CFS after ruling out a pheo, thyroid issues etc. Next, I started having Vital Sign changes......heart racing up to 140's, BP high sometimes, normal other times. Eventually I had a day where I could not sit up without my BP skyrocketing and a severe headache. Went back to my GYN for F/U and she recommended my Dysautonomia doc who is also a cardiologist. Since I found him, I have improved. I still wonder about my high EBV and the frequent sore throats I get, along with swollen lymph nodes in my neck. Surely something can be done.......?

BTW: can anyone tell me how to post information in the bottom of my posts?

I PMed you about this. Hope it helps!!

Yes....thanks!!!!

I have CFS with a diagnosis from my doctor......only b/c I self diagnosed and asked her about it. I was told Fibromyalgia but when I experienced lots of CFS symptoms, my doc said....yea, well, they are the same. So I believe that Dysautonomia is the mother and all the subsets are the different things we have under it, such as IBS, CFS, POTS, etc. I have improved with a small dose of Beta blocker, very small dose of Celexa, & fluid loading. I also went to the chiropractor in the past, as well as on & off Vitamin D. I'm thinking of trying what Sally recommends and getting all my hormones tested so that I can start taking supplements if necessary.

BTW: can anyone tell me how to post information in the bottom of my posts?

Todd...what treatment do you use for Mitochondrial Syndrome?

My doctor for testing hormones is Dr. Dzugan. It is the Dzugan Program. You need a doctor that understands compounding hormones, supplements etc because Dr. Dzugan works with them. You join his program and answer about 200 questions, then get very thorough blood testing. Then he prescribes the hormones and supplements you need. Your doctor gets all of the information by email/phone from him. You update, get calls etc to tweek the supplements and compounded hormones. The hormones are mailed from Mississippi. The most helpful and sweet pharmacist I have ever talked to!

Between Dr. Dzugan and my CFS doctor, I am doing very well. I was unable to function at all not long ago.

If you want to know more, Dr. Dzugan has a wonderful book about hormones and supplements and the blood, what we need. You can google him also. The book addresses many problems. It is so wonderful to have these great doctors.

The program is expensive, but worth every penny. I am so happy my doctor suggested it and I wish I could have started it long ago.

Thanks! I've looked him up and researched his website. It might be worth a try!

I sleep 9 or 10. That is the amount I need. Having CFS for many years, sleep was hard to get but finally I have good integrative MD's. Hormones are all balanced, I have excellent supplements working so I sleep great. So, healing can take place with the combination of supplements and good sleep.

I hope you can stop smoking and also not feel bad when you wake up.

Who is the best person to go to for hormone checks? I really want an extensive workup on mine but don't want to leave my Dys doctor. And I've seen an endocrinologist to no avail. I have an appointment in May & June with my cardiologist and will be asking about hormones but don't know what exactly should be checked.

The beta blocker (Inderal) & my Celexa have absolutely helped me. I'm happy to have them and I'm completely satisfied with low doses b/c I know if my body becomes tolerant, I can gradually increase them.

I always get a little apprehensive when taking a new medication. But taking such a small dose eases my anxiety a great deal. My doc even told me that I must be careful taking vitamins (especially B vitamins) b/c they can make me excitable. When I started my beta blocker low dose...no problems. When I started my Celexa low dose...no problems. Don't feel bad b/c I'm a nurse and had to call my friends to encourage me to take any new prescription. Even then I would sometimes avoid starting the new med. They all thought I was paranoid and would say "just take it already". After getting diagnosed it all made sense.

Hi Dani,

It is ABSOLUTELY the Dysautonomia that causes Medication Phobia. As a matter of fact, it is one of many phobias that we face. See the link in my profile for more info on a book that discusses this. Anyway, when it comes to meds go SLOW & LOW! You can do it and I am definitely praying for you!

Here's my example: Celexa normal dose is 10 mg. I started by taking 2mg and after about 3 months, I increased to 3mg. This is less than half of a normal LOW dose! I have to take liquid b/c they don't make a pill in this low of a dose. I'm staying at this dose b/c it's working. If it ever doesn't, I can always increase it but will only do so 1mg at a time. I once tried to double it.....ONCE! My doctor told me: you know better, go slow! lol!

Well I've suspected that I have abdominal pooling but I don't really know for sure (just a guess) and I thought that might have something to do with it. But it's weird b/c it's only my diastolic and it seems higher when sitting versus standing. Oh well, guess I shouldn't complain since my symptoms have improved and I feel very lucky to be functioning much better. Thanks for the reply!

No one?

I've been feeling better lately and have had some stabilization in my heart rate. However, I still get slightly orthostatic with my BP (hyper so I go UP upon standing). Lately I've noticed that my diastolic is higher when I sit than when I stand. For example: lying-106/66; sitting-123/90; standing-124/83. I've noticed this numerous times with varying degrees.

Could this have anything to do with splanic pooling? Does anyone else notice this also?

I also get lots of pressure in my head thinking my BP is high but many times it isn't. The pressure isn't new but the fact that my BP isn't high is somewhat new.

Any ideas?