posted
Anyone else feel like they're going to pass out, and get really close to doing so, but have an "okay" blood pressure?
I get lightheaded and get that feeling when my blood pressure drops, but now I get it and it feels different...and seems to be urelated to blood pressure. If it's not blood pressure though, what the heck is it?
It's hard to know how to fix it if it's not blood pressure related. Salt, laying down, putting my feet up, etc. therefore don't help, since it's not bp related anymore.
It's an awful feeling. Anyone else get it? I'm so sorry if you do. It sucks.
Posts: 39 | From U.S. :) | Registered: Sep 2009
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posted
Bheiser, thanks for letting me know. I'm SO glad to hear that your dizziness improved! Were your herxes tough on IV?
Al, but I thought dysautonomia had to do with blood pressure? I mean, I do get low blood pressure and do have dysautonomia...but I'm also lightheaded and feel like I'm going to pass out when my blood pressure is okay. Does that happen with dysautonomia too?
Posts: 39 | From U.S. :) | Registered: Sep 2009
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posted
I've stumped my doctors with a similar symptom. The first time it happened I was in the shower, passed out and only woke up when the hot water ran out and I woke up freezing and wet. I was out I estimate for about 20-30 minutes.
The second time it was only a few minutes, but not preceded by any "aura" or dizziness. They did a seizure test on me, bloodwork, stress test, etc. all came back fine.
We really don't know why I'm doing this, but becaue of it, I can't drive myself anywhere, and I try not to be alone too much unless I sleeping or napping.
It's kind of scary to lose control like that.
Let me know if anybody else has had a doctor diagnose or be able to treat such systems.
Thanks for the post! Jenn
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Friends,
Well, I passed out for the first time while treating Lyme with herbs. I was out for over 30 minutes.
The later times, there was definitely seizure activity. One time landed me in the ER for 2 days.
My LLMD thinks these are frontal lobe seizures.
What worked for me was following the advice in an article I found on a link here at Lymenet regarding alternative treatments for seizures. If you search for SEIZURES here, you'll find it.
Anyway, the supplements turned out to be almost exactly the same ones as are used for treating KPU.
For sure, I have a zinc deficiency, so that made perfect sense to me.
By the way, I had the seizure tests, the blood work, the test for dizziness on changing position, etc. All were normal.
Hope this helps.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I know how you feel. I get this feeling as well, a lot... and though my blood pressure is always on the low side, there can be days where my blood pressure is 90/50 and I actually have a 'good' day and feel fine, but then on another day I can feel like I'm going to pass out or feel very ill and my blood pressure is the same, 90/50, so I don't think it always has to do with my blood pressure either.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
The tests for seizures are inaccurate.
I had serious neurological symptoms as well as seizures.
Three EEGs came out, "Within Normal Limits" which meant for lazy neurologists: No seizures.
However, two out of the three EEGs show abnormal activity.
This was taken seriously by an excellent neurologist. Since being on anti-epileptic medication, my life turned around.
Be very careful; possible seizure activity needs to be treated with respect.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
What a timely post! I'm having an EEG on Wednesday to address this very issue.
The "episodes" started while I was on Omnicef and Biaxin. Then I had some sort of stomach attack (maybe pancreatitis) and had to stop the abx. The episodes let up quite a bit over a couple of weeks, but are not completely gone. I feel on the edge a lot of the time.
I'm terrified they're going to tell me I'm having seizures and I can't drive. Then how do I do my job?
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
The best part about getting a diagnosis of seizures is that at best you will obtain symptom management treatment that will increase your quality of life.
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posted
My fainting spells were caused by babesia .. I'm pretty sure.
However, do not rule out the possibility of heart problems. I have A-fib and get faint when it goes into action. Very similar (if not the SAME) as when I was being treated for babesia.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
My herxing has come and gone from time to time bu when I do herx its neurological which becomes very embarrassing!
Posts: 35 | From Baltimore | Registered: Jul 2009
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posted
CanBrave - thanks! The stomach thing and seizure like things are separate - I had my gall bladder out in July and am still having what I think are pancreatitis attacks, which last for a few days and are unrelated in time to the seizure like things.
Not that it makes any difference - it's all kind of sucky! :)
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I've had that kind of lightheadedness unrelated to blood pressure too, but as of yet I haven't passed out from it.
My dorko docs said it's just anxiety--yeah, everything is anxiety.
It has gotten less frequent since being on treatment, but it still happens.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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I do believe that what I'm having are seizures. I believe they are autonomic seizures. They're incredibly frightening, and I agree, they shouldn't be taken lightly.
I plan to bring this up with my doctor very soon, but I'd like to be informed before I do so. I have never dealt with anything like this before!
Cass, I am so sorry that you have had to deal with this too, but I am so glad to hear that you've found relief through supplements. I've been looking high and low for that "seizures" post, but all I found was a post on Omega 3 oils. Do you happen to have a link to any information? What were your seizures like and which supplements did you find most helpful in your particular situation (I know all of our bodies require something different)?
Canbravelyme, thank you so much for the link. I related all too well to the things they described in it. What sort of treatment plan can assist with this issue?
I don't know how any of you get through treatment like this. I simply can't. Everything causes these seizure-like episodes and I can't seem to handle a thing they give me. Treatment has failed for years because of it Kudos to anyone who has stuck it out! What's your secret? Posts: 39 | From U.S. :) | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I used to pass out many times a day. For me, inner ear was a huge trigger. I now longer pass out (much) but still deal with with autonomic seizures, connected to lyme and inner ear (and liver), in my case. I think it's nearly impossible to isolate an exact cause. It all intertwines so tightly.
I cannot tolerate any of the seizures medicines (they actually caused more seizures for me, by intensifying vertigo) but I do much better with magnesium and fish oil - and excellent adrenal support as my main controls, in addition to a gluten-free diet.
*** Bottom line, though, is addressing infections *** with the supportive supplements to help with balancing out symptoms.
You might want to look over this thread with many detailed links on this subject (except for NMH, neuromediated hypotention, POTS, etc. For that, see the cardiac thread or search for past threads in the archives.
Topic: To everyone with cardiac symptoms please read! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I too have autonomic seizures.
What finally helped is anti-epileptic medication.
I have an LL Neurologist (rare breed) - where are you located? If you're not comfortable posting this information PM me.
My seizures are not entirely managed with anti-epileptic medication. As a result of knowing when they're beginning, I take a small dose of sublingual Ativan; four times out of five I can stop them.
I have found this to be tremendously beneficial as having to go through the entire seizure process is very hard on my body, plus afterward my cognition is as though I've had a concussion.
I believe that not having the entire seizure is allowing my brain to heal, and I've been having fewer seizures.
That said, I limit my activity tremendously.
Lights can be a significant trigger; check out these lenses which help with photosensitive triggers:
I'm like one raw nerve. Anything that is stimulating to my nervous system I limit or try to avoid.
_That_ said, I have hugely more ability than I did two 1/2 years ago when I was bedbound by these seizures - anytime I got up to do something I was heading for one.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- canbravelyme,
Thanks for that link. I've had a blue tint and non-glare added to my glasses and it does help. I do wish, though, that a frame could be developed that was totally non-distracting.
I can't wear glasses when I walk due to the distraction of a frame. Those without much of a frame often have tiny screws in both sides of the nose bridge and those really get me cross-eyed like some cartoon character. Bono (from U2) has some nice glasses - (I can't listen to his music) but I sure like some of his wrap around glasses.
posted
Keebler and Canbravelyme, thank you for the information.
Keebler, I'm like you. I can't tolerate anything. Everything makes my seizures worse. I can't even tolerate fish oil, but I can do magnesium. I'm still looking for that post Cass mentioned with a list of supplements in it...
Can xanax help seizures like ativan can?
Canbravelyme, I'm PMing you Posts: 39 | From U.S. :) | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cass has some great information.
If you can't tolerate fish oil, there are many other choices: Borage Oil, Black Current Oil, Nuts . . . You'll have to research flax - I think one LLMD prefers us not use flax oil but I don't recall the reason or who said that.
Seizures can be attributed to a number of causes including metabolic abnormalities, infections, nutritional deficiencies, or trauma. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I abhor those low-energy bulbs.
Do you mean a frame that seals the eye completely, so that there isn't external movement and light peeking through?
The blue colour is very specific to Zeiss. I've had a pair and it helped. (I lost them and am in the process of replacing them)
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- canbravelyme,
Sealing the eye completely - with no visible frame or hardware would be nice. I did get a pair of sunglasses that does that, mostly.
I got one with a little breathing room at the bottom so they don't fog up - but then found the light coming from that space to be so distracting that I cannot walk in them.
I will do a search for Zeiss., THANKS. '
It would be nice to have a pair that blocks out FLASH cameras as the flashes also trigger seizures and everyone has a cell phone camera now. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- MissPatient20,
I just stumbled upon this while looking for something else. Thought it might be of help:'
Adrenal Maladaptation Syndrome: A Sweet Solution For Coping With Stress - By Ward Dean, M.D. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
The Zeiss lens will help with the flashes.
I know exactly what you're talking about re: light coming in the sides.
You must use sunglasses lenses with an 8 base curve or lower for the Zeiss lenses, and that's providing you have no prescription. With a prescription, you'll have to contact Zeiss and find out how large a base curve you can use.
I'm trying to look somewhat stylish these days, so I'm tolerating a little more light "bleed". That said, as you know it's difficult to find a frame that suits our purposes; three or so years ago, the styles suited this well.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
The lens is called: Zeiss Z1 Blue Lens.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Merci Beaucoup, Ma ch�rie! -
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