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Guest Julia59
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Guest Julia59

Well I thought I could lay down for the night and rest-------well not so fast.

I'm obsessed with my heart racing spells---and the excessive adrenaline surges.

I sit and think about the worst things like---what if they can't get my HR under control----

I get so bad that I actually pant---and feel a terrible taste in my mouth.

My belly swelling won't go down---and I have such pain and discomfort in my lower left side---sort of by the kidney---I think. After the attacks are over---my thinking get's back to normal. It's seems to only be during the attacks that I get this way with all the obsessive thinking. Tomorrow I will try the klonopin to see if it helps.

I need to call Dr. Grubb's office to get some help.

I get over anxious way too easily---my side is so sore---even to the touch. Even clothing brushing up against my chest will send my adrenaline surging. Now I've had these spells before---but not with all this.

I don't feel functional at all---I can't zip my pants---I'm just a mess. I know I have lost some weight over the last five days as I can't eat much---but my belly looks 7 months pregnant. I feel like all my stomach acid is about to come out my nose. This is horrible----I can't live like this....................I don't know what I did to deserve this. I am absolutely petrified of going to the doctor---and even more petrified to be hooked up to a heart monitor---I can just imagine myself with my arms flailing about------Maybe i'm having a nervous breakdown....................................................

For some reason this winter seems to be so gloomy---I can't look forward to the holidays-----I think i'm losing my mind............I HATE MY ADHD----ADD---this is just fuel to the fire making it more difficult to reason things out. There is just such apathy in my medical care----I feel like I don't exist. Dr. Grubb is kind and tries---but he is soooo busy.......My PCP has left to southern Ohio---my last PCP wasn't covered well on the insurance----the PCP before that left town, and I don't know how the new one will be who is taking over for my PCP. And the neurosurgeons don't agree on anything.

I was mad at one of my old PCPs once because she said she was worried about my panic attacks and the ADHD-----she said the two were a bad mix. The attacks were under control at the time---and I felt insulted---like I was some kind of freak. Now those words are coming back to haunt me. I feel like my blood pressure is SKY high.

I just can't continue like this-----I can't do it..................I feel like a failure.........Weak---sissy---ect.

My mind just won't let me be...........................

Julie --------------------------- :)

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I know those obsessing thoughts so well. You try and try to push them away but the constant "what ifs" are there. Especially when everything that can wrong seems to happen. I don't like the winter. I swear that as soon as the first really cold day arrives I fall into SAD. The first really nice and warm spring day I feel the sun on my face and I get a happy, all over warm feeling. Not sure if sitting under a high power lightbulb would do the same over the winter for me..lol :)

Are you having trouble eating? Are you getting a lot of gas that your tummy is bloated? I can go through days when I can't get food past the back of my throat and I drop weight. I know that it is anxiety, but my mind will wander to "what if it is something more serious?"

During those spells it is hard to control the thoughts. I really do know those thoughts. I'm always telling my hubby, what if this time my heartrate does not go back down to normal? What if it does not stop racing? I think the adrenaline just magnifies our anxiety and these thoughts may be normally in the back of our minds but during these spells our anixety brings them forward.

Have you seen a GI? I know reflux can trigger a spell for me. I take nexium for a few days when it is bad sometimes longer.

Try to keep thinking that the good days are around the corner and that more good days are on the way. A few bad days feel like weeks and knock anything good right out. :)

Hang in there ;)

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Guest Julia59

Do you still have tachycardia on the betablockers?

I can eat---but very little. Do you start gagging---or have nausea with these spells?

My lower left side hurts so bad--last night and this morning---and it still hurts. I couldn't turn over in bed or sit up without a ripping type of pain like something in there was ripping.

My heart hate is in the high 90s as soon as I opened my eye's this morning---and I took another extra half of a beta blocker last night..

Julie :0)

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Julia,

You should consider seeing a doctor right away for that pain in your side, just to rule out a kidney problem, bowel obstruction, appendicitis, etc. Sounds like this pain is not a normal symtpom for you, am I right?

I hope you find relief soon. You are in my thoughts and prayers.

Hugs,

Gena

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Guest Julia59

I called Dr. Grubb's office this morning. I can get an appointment to see Bev today. She is the nurse practionerfor him. I won't be able to get the cardiac loop recorder downloaded today because the RN that does that won't be in that part of the office today---he will be doing tilt table testing.

I can probably go back tomorrow to have it downloaded. My heart rate is still in the 90s on the beta blockers. This isn't fair.

I also called Ken Davis----he's a psychologist I have seen in the past----very good---and he is a friend of Dr. Grubb---he works *** chronically ill patients. He wasn't in the office yet---but they have a messege for him to call me today...........................................................................

.....

Julie :0)

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Julie,

It seems difficult at this point to sort out what's what...since you are saying that you are having panic attacks at this point. This is NOT minimizing your physical symptoms. But, the physical symptoms are enough, and the panic is really adding fuel to the fire.

I think that getting some klonopin would be a good idea...to see if you could sort of get a break from the anxiety or stop the cycle a lot.

I know you are seeing a counselor...does she perhaps work closely with any psychiatrists that she trusts for you to see? I found that when I first got sick with "CFS" and was also dealing with sleep issues and anxiety, psychiatrists/psychiatric nurse practitioners were the best help I had...we were able to try all of the different SSRIs, tricyclics, sleep meds etc. and I had a lot of supervision along the way. They are more willing to help you tweak the meds and deal with that than a regular doctors office. (or at least that has been my experience) They also know the drugs better.

Because hyperadergenic attacks are part of your POTS too, they can help think of what meds might be good to quiet your nervous system. I have even talked about this with my POTS specialist. B/c the drugs are sooooo specific at this point, and psychiatrists know them best. Perhaps even Dr. Grubb's office knows someone that is also familiar with POTS?

The key is of course finding someone good. That's the hard part!

But, maybe they can help you make George disappear again! :)

That's just my two cents. Not a long term solution to your larger medical issues, but perhaps could bring you some relief from the anxiety and panic...which I am sure would feel good!

I hope I haven't offended. I know you are very fragile and strugglins so much. This post was just a suggestion...a possibility.

Keep us posted.

Emily

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Guest Julia59

No Emily---you are not offending. I also have had some personal stress that i'm sure has not helped at all.

I called Ken Davis late morning---and he has a message to call me back. I will go to him for this---as my other counsler is great----and very supportive, but Ken knows POTS---and dysautonomia---and these hyper adrengic attacks------or panic attacks or whatever you want to call them.

My physical problems have been overwhelming---and in the midst of that I have been pushing myself too hard. I have some klonopin---but as usual afraid to take it---BUT not as much as the other drugs---so not to worry---i'll probably take it---and hopefully it will make me feel a little less crazy. The worst part is feeling is that my body get's so tensed up ---i'm literally a ball on the floor. I just felt like sobbing last night.

The personal issues at home are being worked out for the better---but the past is haunting me a great deal.

I still feel the adrenaline---and I really think it is also a physical thing as it just pours out when I least expect it----------but on the other hand the psychological/emotional let downs are probably triggering this to a degree. I may be able to have Dr. Grubb's office watch me closely with the meds. They will probably order some blood work to see if something else could be causing this--low blood sugar---hyper thyroid---ect.

It's funny how the mind and body can work together. I'm just open to whatever works.

Julie :0)

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hey julie!

sounds good...try taking a baby sliver of the klonopin...i mean like 1/4 of a pill and then go from there. it's out of your system in a few hours so it's the kind of med that is easier to wait out if you don't like how you feel on it. seriously though, the relief from the anxiety that it may give you will feel very good! i have found the benzos work well for the heart pounding and lots of the POTS stuff. no, it's not the greatest long term solution. but you need to give your body and mind a break--this counts as a crisis situation! :)

emily

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Hi Julia,

Glad to hear you have a call in to speak to someone as well as an appt. with Dr. office.

I still get tachy even on the beta. Most times my hr is ok in the 70's or 80's but sometimes I wake also and it is in the high 80's into the 90s at rest.

I take Klonopin as needed and I am very leary with taking meds. I take a 1/4, slip it under my tongue and let it dissolve. My dr. told me about that years ago. It takes the edge off for me. If I need more I will take another 1/4 but only if I know I can lie down and sleep if I get sleepy from it.

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Guest Julia59

I went to Dr. Grubb's office today and saw BEV. She put my on clonidine---it's an alfa-beta blocker. she said this is a good drug for the hyper adrengic patients. I got that filled also--it's not expensive even without a prescription card.

I tried the klonopin and it doesn't seem to help-----maybe too soon to know........I feel a bit weaker----and it doesn't help to lower the heart rate----and I can still feel the adrenaline surges.

The RN downloaded my cardiac loop recorder---and he said my HR is high most of the time---not tachycarida----but in the high 90s--even in my sleep apparently. It wasn't like this before I had this implanted. I have nnot been the same since the lidocaine.

I called Ken Davis and left a message for some therapy. He called me back just as I was pulling in the garage from my appointment with Bev. He put me on the top of his list considering me to be in a crisis situation. He was so nice---and DID NOT make me feel like this wasn't important---and he said my fears are real---and need to be addressed one at a time. I'll be going back to taking 4 beta blocker a day---I was on three. then I will try the clonidine with them. I hope it will help lower the HR. Although it's not always in tachycarida----it's no fun hovering in the 90s all the time---makes one very uneasy........That's just me---I get prone to being hyper-adrengic when it's like that.

Thank you all so much---you are helping me through this............ :)

You all deserve GOOD DAYS.

Julie :0)

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Julie,

Thanks for your update. This has been a really tough few days for you.

Glad to hear that you got in to see Bev, have a plan with the therapist, and have some meds to try. Thanks for keeping us updated. We are worried about you. This all really stinks. Just hoping for a better day ahead.

Wishing you a restful night,

Dianne

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