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Pretty rough times--------George is back


Guest Julia59
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Guest Julia59

Hi Folks---------------------not a happy camper here.

A lot has been going on, and I don't know if the adrengic attacks are from the stress or what.

I've had personal stress----thankfully that is being worked out-------and all the physical problems are causing more stress. My ability to reason between what in need to worry about and what I don't need to worry about has become a mess. I know this is partly because my ANS is a mess.

This morning I felt that aura I get before I know George is creeping up on me---(george is a bad hyper/adrengic attack). I went ahead and took a bath (not overly warm) because I thought a shower would be a trigger. WEll it happened anyway-------it felt like my heart was WILD----and I could feel adrenaline pouring out----surging and surging. Meanwhile I have crazy worries that my heart can't take it because of all the cholesterol issues---thinking my arteries might be clogged. I do my best to stay as calm as possible. I have issues with low HDL--(27)----and LDL of 126---triclycerides 210--which have actually gone down. Unfortunately all numbers went down---even the HDL with diet----not much exercise as it it too difficult---but I do move. Just taking care of my house is rough.

So I have this anxiety on how to help that situation when I can't tolerate statins---and niacin is a no no because it's a vasodilator. Now I have this goop----flax seed oil to try----yum.

OK---let's be clear this is not the total cause of anxiety---but it would be nice to get heart disease ruled out---it would take the edge off things.

I think my anxiety is worse because my POTs is getting worse-----big time----or is the anxiety making the POTS worse-----I just feel terribly insecure all the way around.

Now let's get to the "spinal issues"-------I know i have rambled about this before---but this has been a long road, and I believe it might have a good deal to do with the dysfunction of my ANS. Now weather it's actually a "real" spine issue---or brain stem compression issue is still in question. All I know is that I have stenosis in the cervical spine and in the brain stem area---herniated disks all up and down my spine----and a big feeling of instability. I had to put the key board on my lap because it is easier. It hurts a lot to hold my hands and arms up to type---and I also have to tilt my head back slightly.

Last week I cupped my hands behind my head to stretch----arching my back. Well someting popped at the base of my neck near C7-T1 area. The pain was terrible---it felt like a razor blade was cutting into my spine. I know there are herniated disks on both C7-T1---and T1-T2 in addition to the ones in my cervical spine and the stenosis.

Here's what happened.

My legs are having trouble working------I have had more occasions in which my legs want to fold, weakness----and then a loss of coordination. It usually comes with exertion----meaning the more I try to walk the worse it gets. I had a real bad spell last Sunday. My husband had to halp me walk out of the Mall. I was not able to make it to the other end of the mall. On Thursday I took my mother to the Mall---but stayed in the large stores and drove to the other side avoiding the mall itself. I struggled with my balance and coordination the whole time. My adrenaline was pumpong so hard I could feel my body vibrate. It took about two hours for my body to calm down when I got home. I'm finding that I can't venture out anymore for now as this is getting worse.

Because i'm so hyper adrengic I am afraid to take more tests to figure out what's wrong with me. My stomach is in knots---i'm starting to get nausea when I didn't have this before------i'm having trouble breathing if I turn my head a certian way---usually to the left. And now I am terribly afraid of hospitals. Just the smell of the linens makes me uneasy.

I just can not deal with all this anxiety/hyperadrengic mess---I just can't do this again. This winter is so terrible already ----wind chill today is 5 degrees---blowing snow from the snow storm we had the other day.

I just feel so gloomy---and I feel like i'm sucking the life out of my husband. My family never calls----and does not understand this at all----so when I get like this--(hyper/adrengic) I disappear. To top it all off I have ADD/ADHD and it makes it seem all the more worse. I can't seem to reason things out very well---and I become very reclusive during these spells.

Sorry to vent here---but I'm in quite a mess lately. My upper back feels like it's caving in......................................

I need to quit typing.........................

Julie :0(

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Dearest loving, giving Julie,

Anyone who has dysautonomia, is hypermobile, has brain stem compression, and hashmoto's has enough going on without piling worry on top of it. You can't change that you were born "loose," but you do not have to add to it by bogging yourself down in worry.

I know you have had many tests done but I don't know the full extent of it. Do you still need to be tested for heart disease? Then get an appointment to do it. Just don't waste time thinking about it.

Put worry into perspective. Jeff has had very high triglycerides since his 20s and very low colesterol--too low. This skews his ratio on the blood tests. His father had this same pattern. His father had bad heart disease in his 40s, but he died of liver disease at age 75. Jeff does not have heart disease. He does, however have the worst imaginable cancer. We worried for years about his triglycerides and that he would have heart disease like his father, but we are not at all concerned about his triglycerides or his heart anymore.

Please, Julie, try this mental exercise. Set a timer for 5 minutes and focus on a particular worry. Imagine all the worst case scenarios possible, including how George will get worse and worse until he kills you. Do not break your concentration for the entire five minutes. When the time is up tell yourself, "That is all of my worry time for today. I am done with worry until tomorrow." Let me know what happens.

Many people with dysautonomia have minds that get ahold of a particular thought and just won't let go of it. The five minute worry exercise is the best way I have found to break that pattern.

Everytime you find yourself slipping back into worrying, tell yourself, "I don't need this on top of everything else," or "I have already had my 5 minutes for the day."

If you can get that worrying under control you will lower your stress level and that should help handle George.

Love and hugs,

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On the lighter side, I like how you name your attacks. Cute B)

Sorry you are going through such a rough time. Wish I had some words of wisdom. I know those pre-attack feelings, how does one not shrink from them or add fuel to the fire? Maybe the weather and upcoming season has taken a bigger toll on you than you thought it would.

Do you do any pt for your spinal issues? Anything that they can offer that may help?

My hubby has high cholesterol. He does not take a statin. The dr. prescribed welchol. From what I recall this works largely on the ldl and triglycerides. His hdl has remained good and the other numbers have gone down. Just a thought. (though it is 6pills a day).

Wishing you better days ahead. :)

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Guest Julia59

MichiganJan--and Mom4cem---Thanks so much for you kindness and understanding.

Jan---I realize you are going though so much right now---and yet you reach out to others----you have also posted so nicely to me without hurting delicate feelings---you know how this can be when in a very vulnerable state.

I mentioned all of this to my therapist when I saw her Thursday. I told her how the adrengic spells are the worst for me. I have been trooping along with the rest----but those spells put me over the edge.

Having other health concerns don't help-----and these are real concerns----thank you for understanding that.

When I first got sick this was a major problem for me----I didn't actually get diagnosed with the POTS until after the spells subsided a bit. After the diagnoses I met so many people who were so much worse off then me---so that is when I tried to give a little support back because I live so close to Dr. Grubb's office.

I apologize-------Sometimes I feel like such a whiner------------

Julie :0)

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Julia

Feel better soon.

But I had to smile because when I was in school, George was what we girls called our periods!! So I was somewhat confused at your title on your thread, lol.

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Julie--

so sorry that you arent feeling well.. wish i had some magic words of comfort for you!

But here's a HUG!

Linda

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Hi Julie, Don't feel badly for talking about your problems. Sometimes it can really be a help. You are not a whiner, you have an awful lot of stuff to try to deal with and it can definately get overwhelming at times. You are doing your best to deal with some difficult health problems. Keep on going, you are doing well!! I hope things start to calm down for you soon. Take good care. Laura

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Hi Julie!

Try to be gentle with yourself. Remind yourself that you have experienced this before and although it is miserable you know you survived in the past and you will continue to do so (although I realize sometimes in the moment it doesn't FEEl like you will).

I agree with Jan about the choleseterol levels.

It's so hard not to worry sometimes but try to do things that get your mind off of your body. Journaling sometimes helps, self talk can help....you can tell yourself that some of the pain and discomfort you are having you know is because you have an overload of hormones right now and remind youself that it will pass. The more you can stay calm the more that will help but I do realize it's difficult to do that sometimes.

Today might be a good day to try the new med you have that you and I discussed before.

I'll try to write you more later. I'm not thinking very clearly right now as I woke up last night and apparently have the flu or some kind of bug and think I'm on my way to the ER soon if things don't start turning around. I'll be in touch as soon as I can though.

Hang in there! Do something calm and special for yourself if you can.

I'm sending ((HUGS)) your way. Meanwhile, put George in time out and tell him you won't tolerate him bothering you like this! :)

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Dear Julie,

My heart goes out to you. I just do not know how you all deal with this condition day by day, then on top of everything else, to have these attacks as well. I pray that your family is being a comfort and support to you.

As a nurse, I'm going to offer some thoughts - try what makes sense for you - ignore the rest.

I have extruded discs in my neck and sometimes radiating pain. Heat is very helpful to me (just be cautious because of the vasodilation). I use the Thermacare wraps that you can find in most drugstores - I think I get them cheapest at Target. If heat doesn't work for you, than there are some that can be chilled as well. I also get relief from Tiger Balm. This comes in an ointment form or in patches as well. Just be sure to get the "ultra" form as the other one stains (I don't know why they even make a staining one ??? For those who want stains on their clothes? duh!) I also have some of those flax filled pillows in various shapes that can be heated in the microwave or chilled in the freezer.

Have you tried any aromatherapy or salts in your bath? IMO, Masada bath salts are fabulous. Epsom salts are the economy version. Lavender is soothing to the nervous system. Eucalyptus is soothing to the body. Avoid peppermint as it's stimulating! Rosemary might be also, but might not. Try just a drop or two of any of these as you're likely to be very sensitive and too much can be nauseating. Get pure oils - avoid artificial scents as they can be irritating. Aura cacia is a good brand that's not too expensive and easily found.

Really good quality green tea (if you can handle the low level of caffeine) is rich in theanine, a substance that is calming to the nervous system.

You might want to save this info until you're feeling a little better, but I noticed that you're trying flax oil to help with your blood lipids. Have you thought of fish oil instead? Most if not all of the research on this has been on fish oil, not flax. Unfortunately, people tend to generalize the results from fish oil to flax oil because they're both omega 3 oils, but they are quite dissimilar in many ways, and it may not be a valid generalization. Fish oils have 2 critical fatty acids, EPA and DHA, that are NOT found in flax oil. Eating walnuts has also been shown to reduce blood lipids.

Ask your pharmacist if you can see his/her copy of the Natural Medicines Comprehensive Database. They have a whole tutorial (best viewed online imo) of natural products that are helpful for lipids and give a good explanation of the quality of the research evidence for each one. I have naturally high (family) cholesterol - I snack on nuts, eat lots of veg and fruit, only whole grains (oatmeal, whole wheat english muffins, brown rice), lots of fish (fresh + canned tuna and canned salmon) and poultry and a little beef or lamb. I used to eat a lot of fruit and my triglycerides were too high. Now I have just one piece a day and eat more veggies. And I use olive oil on everything. I also work with a preventive cardiologist to evaluate the particle size of my cholesterol - more important than the numbers themselves, and other important things like CRP.

If you are Jewish or Christian, I find that reading the psalms, slowly and outloud, is very calming. If you're not, try this same technique with your favorite inspirational readings - slowly and outloud, just a short reading at a time. Repeat. Or have someone read slowly to you in a gentle voice.

Please care gently for yourself at this difficult time. And be sure to let your family know how you are doing so that they can care gently for you as well. Don't put any demands on yourself right now. Be patient with yourself. This WILL pass.

Very gentle hugs,

Dianne

Edited by momdi
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Guest Julia59

Oh Poohbear---I hope you feel better soon---and I hope this is not the flu........you don't need that. I hate to see you go to the ER. Thanks for your support----that is so nice of you to post when you are not feeling well.

Momdi, thanks for all the wonderful advice---i'm going to print it and stick it up somewhere where I can see it. I'm going to check with my pharmacy to see if I can get a list like that. I follow a fairly good diet---but I don't get enough veggies---or fruit----but I do stay low fat---and try to stay away from refined carbs---and if I have them it's a very small amount----but one must be careful as you can eat just a little ten times a day....... :lol: Kind of like eating one M&M at a time----- 40 times a day---------------- :) In the end you still ate the whole bag........Hmmmmmmmm---now i'm wonder how many M&Ms are in a bag......LOL

Poohbear, Linda, Laura---Mom4cem---and MichiganJan----thanks again---------all of you are a blessing.

It's nice to see you all understand.

Julie :0)

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Julia,

I agree with Momdi's advice on the fish oil and the many other healthy tips she provided. I take a fish oil made by Renew Life that's enteric coated and has peppermint oil in it...this prevents any aftertaste or fishy burps. My husband likes a fish oil called Coromega. It comes in individual packets that you squeeze in your mouth. It tastes like orange pudding. It's very good. Either way, it can really improve your cholesterol numbers. Fish oil/omega 3 fatty acids are also good for your brain, they fight inflammation, excellent for the heart and heart rhythm, and provide so many other benefits.

I hate having those feelings of adrenaline surges all the time. I just went through a spell like that. Anxious all the time and worrying about everything under the sun. My heart will race uncontrollably and I always think I will certainly die one day of sudden cardiac arrest. Other days when it races, I can calmly talk myself through the episode and feel confident I will be okay. I try to stay in a positive frame of mind, but I know it's so difficult to do this when your body is going wacko! :)

I am not one to take meds unless I have too, but sometimes in a crisis I do take Xanax, just a 1/2 of a pill and it does help take the edge off my anxiety. Klonopin can do that as well. I realize benzos can be addictive, but taking an anti-anxiety med at least for short-term use, might be something you want to talk to your doctor about. I know it's hard to tell whether the anxiety is making POTS worse or vice versa. I've given up trying to figure that one out!! Exercise helps me relax sometimes too and just seems to regulate my ANS. Can you do any floor exercises?

I know how alone you feel when your family doesn't understand. But we're here for you so feel free to vent anytime. Hugs and well wishes your way!

Gena

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Guest Julia59

Thanks again!

Gena----where does your husband find that Coromega? That would be wonderful---as I have a rough time with pills.

Dianne--thanks for asking----my adrenaline surges are a bit better last night and today. I'm wondering if I had a reaction to some soup I ate---as I had to go #2 a lot. But sometimes that can come with adrenaline surges too...HMMMMMMMM

I'm still considerably shakey ----and I sill feel a bit tachy. I wonder if it could be my cycle---as I am on that---the tale end of it now. But my spell peaked on the first two days. My cycle is short---and light---and has never changed from age 12. I'm 46 now----and feel crampy more then usual---and am usually terribly potsy..............just before and during, but this time it's been more disabling. I think it might be a combination of things----the stress, period-----------and that darned creepy vegetable soup I ate----must have been full of MSG. I need to go to the gyno-----I am way past due. I feel like my overies hurt....

I won't be able to get a mammo gram-(spelling?) as I have the implantable cardiac loop recorder in the breast tissue. They will have to do an ECHO----but there in no doubt I need a female check up. I think my hormones are out of wack. The last time I brought that up I was laughed at------I need a new gynocologist.

I'm just not sure what is causing what. I think I am going to cancel my appointment at the Cleveland Clinic for Dec. 22nd---and change it for some time when the weather improves----early spring. It's for a rheumatology appointment for suspected CFS---and FMS. I don't think a couple of months will make a difference----I will also change the NSG's appointment for Jan 23rd and change that to early spring also. Meanwhile---I have Dr. Grubb close by----only a mile away--- :) And Dr. Heffez is aware of the severity of my spinal issues should I need to contact him. The NSG at the Cleveland Clinic is good----but he thinks my neurological problems are based more systematically----I don't agree.................so I don't think it will make much of a difference if his appointment waits too.

My neck and back are pretty bad------------and that may also attribute to my sudden adrenaline surges. The base of my neck and upper back----and cervical/cranial junction feel a terrible mess. I haven't done much physically---so I feel a bit better---------but now I feel headache at the base of my skull---and feel somewhat disoriented...

I'm taking it real easy--------the trip to Cleveland will be too much right now----that is how bad off I am. My nerves will get so worked up from the two hour drive there it will just make me crash more. With the shape my neck is in------it's too risky to drive with all the black ice accidents I have seen----and all the racing semi's on The Ohio turnpike. I know my health----and this is what I need to do to stay out of a deeper POTS HOLE. WE just can't handle that right now-----it's just my hubby and me---not a lot of other support locally. I'm fortunate to have him---but he is also very busy working two jobs. He works as a letter carrier for the US post office---and also is working for H & R Block and will be doing taxes. He went to school for it---and he also has his bachelors degree in Accounting---he though he would try to get some experience. Eventually---he may get his Masters in finance----and will end up a financial advisor in his older years. He has a lot of pressure----UGGGG---just getting the snow off the driveway was crazy-----we don not have a snow blower that works---so we borrowed one---and finally he did it today---and also had to go to the grocery store--------uggg just a lot of stress on him. I'm up to cooking today---and some light house work---that's about it. No vaccuuming------------------not for a while-------

Oh my-----i'm rambling again..............All and all it's not terrible---at least I can relax enough to enjoy a movie or something. If I pace myself---my adreneline should not get too out of hand---let's pray it doesn't....... I also think I have some pretty bad OI kicking in lately....... I feel like all my wiring is loose...........

I do have klonopin---and I got it filled---Dr. Grubb gave me a prescription for it when I told him how bad my nerves were from all this. I'll take it if things get rough........

Thank you so much for your support------------I really felt like I was in quite a fix---not so bad now---and I hope I continue to improve.

Julie :0)

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Hi Julie,

First, am so glad to hear that you are headed in the right direction. Keep focusing on where you're going, not where you've been. Fix your thoughts on good things. I know - way way easier said than done.

Second, I have some additional thoughts for you.

I used to own a health food store and we sold a ton of Coromega. Both my mom (lymphoma) and dad (parkinsons) took it before they passed away. My mom liked it mixed into her oatmeal. My dad liked his in applesauce. You can also eat it straight out of the pack. The taste is pretty good actually, but there's a bit of an oily aftertaste, imo. That can be helped if you refrigerate it (don't freeze it as it will separate and break down) and/or mix it and/or follow it up with some food. It's a great product and excellent quality. The best value is the 90 pack size. I'm sure you can find it in any health food store or online. They also have an informative website and will send you free samples.

I don't know how hormonal surges affect dysautonomias, but I can tell you from my many years in my store that most women in their 40s are perimenopausal. For some twisted reason, at this age, many women start to have trouble with their cycles that are reminiscent of their teen years. Acne, serious pms, cramps, heavy cycles, irregular cycles, GI problems - you name it. Stinks. So unfair. Acne and cramps AND wrinkles - gimme a break! Before I went menopausal, I had bad cramps and heavy cycles. It really got my adrenalin going, so I can only imagine what it's doing to you. Ten years ago, most gyne docs didn't know the word "perimenopausal". Today, they're all over it. If yours isn't, move on, imo.

If you've been trying flax, a lot of my customers found some hormonal balance by taking the flax SEED. Just be sure that it's ground or that you grind it in a coffee grinder. Start slow - 1 tsp to start. Remember that it's fiber. :)

Ok, so this is what I've learned about men after almost 30 years of marriage. May apply to you, may not. 1.Guys like to be useful. 2.They like to fix things. 3.They love being appreciated (who doesn't?). Your hubby sounds fab - try not to feel badly for all that he is doing for you, just share the gratefulness that I know must be overflowing your heart. Just say thank you right now and I know you'll find little ways to show your appreciation when you're feeling better - and remember, it's those LITTLE things from your heart that will mean so much to him. Don't worry about the big stuff.

I hope and pray that tomorrow morning will bring a little bit better day for you :)

Press on!

Dianne

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Julia,

In response to your question...You can get the Coromega fish oil at most any heath food/supplement store (but not at places like Wal-Mart)...or you can get it online at many websites. I like http://www.vitacost.com or http://www.iherb.com. Vitacost sells it for less, but their shipping isn't as fast as iherb.

Best wishes and I hope you start feeling better soon!

Gena

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Hi Julia,

I take the coremega also. Now it also comes in a chocolate flavor also. Pretty good.

I swear I am going through perimenopause. I'm 39 and still having reg. periods, but the darn cramps, backache, acne,cysts ,it is like I am 15 again.! I had my levels checked on day 3 and my levels were fine, but I certainly don't feel that way.

I worked for an ob/gyn for several years and she used to recommend evening primrose oil,(softgels) that were supposed to help balance out the hormones as well as Vitex-(herb)that I believe comes in capsule form also.

I have to pursure that also. Though my blood tests came back fine, in the past I have come back as post-menopausal when I was in my early 30's!, so I think our levels can constantly change.

:)

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julie -

i'm super late on the uptake here as i've been having a pretty rough time of it myself as of late but did want to let you know that i'm thinking of you and sending you some (((HUGS))) from cleveland.

momdi & gena -

thanks for all the info/knowledge on natural options, supplements, etc. dianne, i appreciated the info you posted to me re: regulations, databases, etc. on supplements and the like awhile ago and am sorry i never replied to say so. i can't recall what thread it was on now but did want to let you know that i really appreciated the info & bookmarked some of the sites to delve into more as soon as i get my final paper turned in for the semester. thanks!

:) melissa

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