lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Not sure what's going on but I can't sit still. I'm all over the place. Can't catch my breath, but not like air hunger.
Heart Rate was 160 on arrival with BP 96/67. I took Klonopin, Xanax and nothing worked But benadryl breaks it all. Only problem is the break is like 20 min. Than it starts right back.
I was anious earlier but not now yet my body is still going.
I wish I knew what the heck was going on as I was losing it and of course things have settled a bit since being here.
Something in the brain isn't working right. Its like free flowing adrenaline all day long.
Everything was shaking from head to toe including my head
Took so many sedatives and yet nothing would sedate me.
Still waiting to see Doc.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Gosh so sorry to hear your there again!!!
I wish I knew what to say that would help but I am perplexed.
I hope they can help you there.??
Do you think it is medication related? Is your LLMD able to be contacted and brought into the picture?
Let us know..
Sending HUGS and Prayers your way and that there is an answer to resolve this and you can be back home and better very soon!
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Please ask your doctor to consider porphryin overload. This might be the best time to test for all the porphyrias - this requires more than just a urine test, although that could be start.
There are at least eleven types of porphyria - all need tests that are a bit different from the others but, still, it can be done with one whole set of tests. Contact the Porphryia Foundation below - or I would hope someone on staff at the hospital would be an expert.
I have very little money but I'd bet everything I have that this is a very likely consideration. If so, a corrective IV of glucose or a heme product could, literally, be a life-saver.
If you can't get that, carrot juice or beta carotene is a known treatment.
posted
Try to get the ER docs to give you some IV magnesium.
Lyrica might be of some benefit, but not sure. Would start at very low dose -- the max dose hubby could take was 25 mg 3 times per day. Higher doses landed him in the ER.
So sorry you are back in the ER. It sounds like a toxic buildup. When you get home try a castor oil pack. Do you take sarsaparilla or activated charcoal or bentonite clay? Some sort of toxin binder could help.
Be sure and get copies of all bloodwork from the ER. Try to get them to run a GGT -- if elevated then you have a fatty liver and phosphatidylcholine or lecithin would be very beneficial to help your liver detox.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Bea has excellent suggestions. A magnesium IV can calm down a lot of the symptoms.
I've heard of phosphatidylcholine really helping someone I know who has fatty liver issues. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bettyg
Unregistered
posted
twister, good advise from those above; just sending you moral support ... hug/kiss.
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These seizures caused me to feel out of body and anxiety off the charts. I felt like I was walking in a dream but really it felt more like a nightmare. Paranoia set in, I became almost housebound and finally a psychiatrist diagnosed me.
The test he ordered is mainstream, a 24 hr. sleep deprived EEG.
To have all of the symptoms you are having and have one answer clarify alot of the mental ones would be amazing. It was for me, I got a new lease on life.
The seizures would be stronger than "absence" seizures, I guess it would be considered a true seizure but not the kind where you fall on the ground and loose conciousness.
Take care, Curley
.
Posts: 982 | From Florida | Registered: Feb 2002
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
So glad that you went LT. I am praying that they can help to stabilize you and give you relief from the constant torture.
I think it was the best decision.
XX, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I would suggest Porphyria also. I used to get this as a herx. You should consider using a binder like Cholestrymine to get the toxins out that overload the body and produce these symptoms.
It is something that is overlooked time and time again by most lymies who really don't need to be herxing as badly as they do.
Be well.
Posts: 770 | From USA | Registered: Jul 2006
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Sounds like it's possibly a form of "Chorea" called "Hemiballism".
My aunt had this diagnosis after a specialisst finally diagnosed her. She had flailing of arms, uncontrolable, and bells palsey with it.
She got it under control eventually, with the use of a few Psych drugs, specifically for anxiety.
Extreme anxiety can still bring it back to some degree for her. Below is a link to this unique disorder. Have your MD check this out for you.
posted
Just checking in to see if you've been able to post. Thoughts and Prayers are with you.
Posts: 982 | From Florida | Registered: Feb 2002
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WildCondor
Unregistered
posted
Hang in there Lymetwister! We're all here for you wishing you the best. Be strong!
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bettyg
Unregistered
posted
twister, sending you prayers and a hug/kiss for better days, months, and years ahead
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