Topic: I think I'm having seizures?? Having trouble swallowing as well...
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
For a while there I seemed to have my Lyme symptoms under control - I think I was very close to remission.
Then about eight weeks ago, they started creeping back in very subtley. Some mild wrist pain, muscle twitches, brain fog, etc.
Well yesterday was a so-so day for me. The first part of the day I was pretty fatigued and a little achey but by mid afternoon I felt pretty good.
Well last night I was eating dinner and I could not seem to swallow my food. It was like my body just literally forgot how to do it.
I have had this symptom before but it was before treatment and also at one of my sickest points.
I finally just decided to skip dinner, because I basically just ended up with a huge amount of food in my mouth that I couldn't get down.
My husband asked me what was wrong and why I wasn't eating and I was trying to explain it to him.
As I was explaining it, I began to stutter uncontrollably over the word "My" so it came out like "my my my my my my my my".
At the same time my face kinda contorted on it's own and my index finger was moving up and down uncontrollably and I felt very lightheaded.
This lasted about thirty seconds. Scared the crap out of Beau and me too.
For the rest of the night I felt very out of it and disoriented.
I finally went to lay down and I kept having these tiny little electric shock sensations inside my brain and some pretty bad heart palpitations.
By the grace of God I managed to drift off to sleep. Still feeling not quite right this morning and my hands are shaking like a Parkinson's patient. This symptom is not new to me either, but one I've not had to deal with in a very long time.
Does this sound like a seizure to ya'll?? What should I do?
I'm very discouraged right now and a little scared too.
I am currently on Mepron, Zith, Amoxi, Flagyl and Diflucan. In case your wondering - this is not a herx. I've been on a downward spiral for a while.
I'm thinking I need some heavy duty Lyme drugs to wack this infection hard. I'm thinking of IV for the first time ever.
Any input is appreciated!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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I'm so sorry to hear about your decline and scary experience. I will let others more experienced come along with their expertise. I just wanted to give you some support and well wishes.
I will say I've had some pretty strange brain-type "episodes" as well. One where I couldn't stay awake, not a fatigue, like my brain was just shutting down, it was strange and scary, lasted maybe 20 minutes. I also get the shock feelings off and on and it will sometimes cause certain parts of my body to jump. I too am familiar with the tremor stuff. Oh, I've also had stubborn, weird swallowing before, never lasted very long and not to the extreme it sounds like you were having. I have Lyme plus all the co's.
I know others with more experience will chime in. I hope things improve for you soon. TS
Posts: 566 | From West Coast | Registered: May 2008
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sutherngrl
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Member # 16270
posted
I am so sorry Lauren, I thought you were doing better these days.
You know me, Miss conservative. Not sure about IV's. I personally would try to stay away from them. All the people I know that are well, did it on orals. I was thinking the main reason for using IVs would be if you had trouble absorbing orals.
Is it possible that you were over tired or had over done it before this episode? For me sometimes that will trigger symptoms that have long since been gone.
Maybe not a seizure but maybe a severe form of brain fog or possibly something to do with whatever nerve is responsible for swallowing.
I also have experienced some really weird symptoms similar to what you have described. Every night when I lay down and try to relax I feel an electrical type current ruuning through my body. Also have had body parts jerking.
Maybe you just need to change you medications. There may be some that work better for you than the ones you are on.
You should talk to your doc about this!
I will be thinking about you!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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That is scary as heck and your LLMD needs to know what is going on.
I am so sorry that is going on.
This disease presents with so many horribly scary symptoms.
Your doctor can help you decide if IV is the right thing for you.
Hugs,
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I'm very sorry you're going through that. It sounds like seizures to me, but of course you need to speak with your doctor about this.
I didn't realize how many seizures I have had nor for how many years, until I read up on the different types at this site - it covers all kinds of seizures (not just epilepsy):
There's a lot of good info at each linked type - it's very helpful, and also can be very reassuring to read their prognoses.
I too have had swallowing shut down, and brain shut down, among other things.
Your particular episode sounds pretty involved and long-lasting (according to that site), and I think it deserves calling your doctor immediately and letting him/her know the extent of your symptoms and the duration.
I guess the old "relapsing-remitting" characterization of this bug is on the mark. Maybe if you go at it again with a new arsenal, you'll hit it harder, as it seems to be active right now. Just brainstorming a little.
Please let us know how you're doing and what your doctor says?
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Thanks ya'll so much. The odd thing is that with the exception of these odd nuerological symptoms - phsyically I'm feeling pretty good.
I've been better but I've been a LOT worse too. I put in a call to my doc so I'll just have to see what he says.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I'm so sorry to hear about this. It must have been very confusing and upsetting. If you pushed through that afternoon fatigue without a rest, the adrenals might just have come back complaining later.
This need not indicate a big step backward at all but, perhaps, just calls for shifting your step in a different direction regarding your treatment.
Not to overwhelm you, but if anything helps, I'll share some of what has helped as I have dealt with various kinds of seizures over the years after getting lyme. For me, inner ear stuff is also a huge factor in the triggering from startles (as is adrenal fatigue).
First, anyone can have a seizure. If you give anyone enough toxins they will have a seizure. But there is a rare neurologist who would understand the connection between lyme and seizures OR between an overstressed liver and seizures.
I would call your LLMD today. The most important thing is to describe how your swallowing gets stuck.
After any kind of seizure, one will feel out of of for a day or a week - or more. So honor that your brain - and your adrenal system need rest.
Be careful about watching TV as there are so many hits the eyes take on commercial TV - sharp shifts and explosive graphics, etc.
Go back over your diet to be sure you did not eat anything with even a trace of aspartame/Nutrasweet/Equal or MSG in any of its names.
Had you had a recent exposure to a new cologne or cleaning product. Going scent free and chemical free in the household cleaning category will help lighten your overall load on the liver.
If you use fluorescent lights, ditch them and go back to the regular kind of light bulbs - best if bulbs are covered and not bare. The new energy lights may be good for the wallet but they are known to trigger seizures in some people.
This may not happen again - or it might. If you can recall any unusual sensations before this happened - and then if you feel that again, immediately lie down and you might be able to prevent this.
Your LLMD might want to do an MRI or EEG but, often, an EEG will not show seizure activity unless it happens at the very time of the test and then it still may not capture it if the electrodes are not monitoring the part of the brain where it originates.
AND if a seizure is from too many toxins or a stressed liver, the EEG is NOT likely to be of any help. In that case, many seizure drugs can just add to the load as they can be hard on the liver.
MAGNESIUM is the very best thing you can do. and FISH OIL.
Andrographis has helped reduce the intensity and frequency of seizures for me. While that effect is not mentioned in any of the literature, it works for me. (It is mentioned in Singleton's book and discussed at length in Buhner's.)
ADRENAL support is vital as adrenal exhaustion can trigger seizures.
A Gluten-free diet helps me a lot. I have noticed that anytime I slip or unknowingly consume gluten, within three days, my brain takes a zap.
Low or high blood sugar can trigger, too. It's good to have that check, just in case, as well as liver and kidney function and whatever else your doctor thinks.
In addition to talking with your LLMD, I like the shotgun approach so that chances are best to prevent this from happening again. Be sure to get rest and if you get a sudden drop in energy, lie down immediately.
It's better to prevent one than just wait and see if you are pushing the envelope.
If another one comes along, the homeopathic ARNICA, right afterward, can help offset the adrenal shock and keep the brain from swelling, therefore prevent a migraine that can last afterward for up to days. BOIRON is one brand of homeopathic that most health markets carry.
And, after a seizure, the blood sugar often takes a huge drop. Getting sugar to your brain is vital. If you have some d-Ribose, that would be a good choice, but sometimes, this may just be the an isolated time for some simple carbs, followed by a protein powder and good fat, such as fish oil, breaking open the capsule in your mouth.
Say all you want about avoiding sugar to avoid candida (and that is valid). However, one paramedic got me to understand brain cells can starve if the sugar is cut off and right after a seizure can be a critical time. Even a spoon of plain sugar can save some brain cells (in my case, as my glucose is around 60 afterward) since the seizure activity takes a lot of sugar from the brain.
And, if by chance, this might be related to excess porphyrins, sugar can also save the day and prevent cell damage. (link below).
I know I've tossed out a lot here. You don't have to take in all in now, but you might want to copy and paste to your file.
Had I tired harder when seizures started, they may not have continued so long. But, I did try very hard. Doctor after doctor saw them and kicked me out the door. Seizure drugs turned my legs to jello - but - they do help some people.
Still, many health adults can experience an isolated seizure during their life. Your LLMD should be able to be of help as seizures are common with neuro-lyme and other TBD (tick-borne disease).
The various nervous systems get so fried with lyme and that is why the LLMD or ONLY a LL neurologist will do. Ultimately, your hunch in refining your treatment, is the most likely ticket.
For those with lyme who have had seizures, they report that when the lyme/TBD is successfully treated, seizures disappear to be just a faint memory - a blip on the screen.
Good luck. And I hope you have somethings that can bring you some laughs today.
--
[ 02-06-2009, 02:27 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keep us posted, lauren! I'm so sorry to hear about this. IV might be the way to go, but beware of Rocephin.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Massage may be very helpful to loosen tight muscles.
Your LLMD may know of a massage therapist - or a PT who can work on you neck muscles and swallowing exercises - in addition to an overall massage that can help calm the nervous system and support the liver.
===============
B-12 shots have helped me tremendously. A special kind is mentioned here:
[ 02-06-2009, 02:10 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Excerpt: . . .Last year the charity Epilepsy Action reported that a small number of people with the illness could have seizures triggered by low-energy bulbs. . . .
Energy-saving light bulbs could trigger migraines, say campaigners.
The Migraine Action Association says members have told them how fluorescent bulbs have led to attacks.
The government is set to prevent the sale of conventional light bulbs within the next four years in a bid to cut carbon dioxide emissions.
Concerns have already been raised by epilepsy charities about an increased risk of seizures from energy-saving bulbs.
Some bulbs use similar technology to fluorescent strip lights, and some users have complained that there can be a "flickering" effect.
They use approximately a quarter of the energy of conventional bulbs, and in September, Environment Secretary Hilary Benn said that a voluntary agreement with retailers would remove all conventional bulbs from the shops by December 2011.
However, Karen Manning, from the Migraine Action Association, said this could be damaging to some sufferers. She said that up to six million people in the UK suffer from some sort of migraine attacks.
"These bulbs do trigger migraines for some of our members - it's either the flickering, or the low intensity of the light, causing eye strain. "We would ask the government to avoid banning them completely, and still leave some opportunity for conventional bulbs to be purchased."
Old technology
However, the Lighting Association, which represents bulb manufacturers, said that the latest energy-saving bulbs did not produce a flicker.
A spokesman said: "A small number of cases have been reported by people who suffer from reactions to certain types of linear fluorescent lamps.
"These were almost certainly triggered by old technology."
[HOWEVER - my ``however'' inserted here ]
Last year the charity Epilepsy Action reported that a small number of people with the illness could have seizures triggered by low-energy bulbs.
posted
Im so sorry to hear that your going through this lauren. I dont know if its a seizure or what. Ive had the difficulty swallowing and weird tremors before too.
I really hope you arent backsliding or getting worse. I would definately tell yoru doc asap.
Hang in there. I hope this passes soon and doesnt ever come back.
posted
Lauren, I'm so sorry you're going through this scary experience. Thank goodness your husband is there to take care of and monitor you!
I'm glad that you called your doctor and hope he calls you back soon. You can't go all weekend without talking with him, so keep calling or fax the office if you don't get a response within the next hour or so.
How long have you been on Mepron? I've gotten many weird neuro symptoms since starting it about 3 months ago, and new ones keep coming(though nothing like you experience).
I like Keebler's suggestion of recalling what you've eaten recently that may have triggered an extreme allergic reaction. But you've probably already done that!
Please keep us posted on how you are doing and what your doctor says.
Erica
Posts: 408 | From California | Registered: Apr 2008
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lymielauren28
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Member # 13742
posted
Thank you all so much for your kind words and support - it's brought tears to my eyes.
I did drink a diet Dr. Pepper last night - which is a rarity for me. I know I'm fixing t start my period any time too, and as all you ladies know that causes all sorts of symptoms to crop up.
TuTu, why beware of Rocephin?? Just wondering if you know soemthing I don't.
Keebler thanks for all the links - I'll look into them when I'm more with it.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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feelfit
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posted
Hey Lauren,
I have been having the exact same swallowing problem for three and 1/2 weeks. I have food in my mouth and I cannot initiate a swallow....feels like I have just lost the ability to do so.
I have not had the word sticking. But I have had sensations where my brain just seems to go numb and I shake my head like a dog trying to clear it.
I believe it could be nerve involvement....cranial nerves.
How is yur swallowing today?
Keep us posted. Big hug.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Diet Dr Pepper... aspartame .. Google it // can be very toxic to the brain.
Rocephin can cause more problems than it solves, in my humble opinion. Relapse is common unless followed or coupled with flagyl.
I just am not impressed by what I've read about Rocephin on this site over the past 8+ yrs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CD57
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posted
hi -- in my non medical opinion I don't think it's a seizure. My LLMD has explained that Flagyl can do some really weird stuff with regards to the CNS....some of your symptoms sound exactly like ones I had on Flagyl, that went away when I stopped it. I didn't have the swallowing thing but I had a weird finger thing and also brain zings. I really think it's the Flagyl. Why do you think you're in a downward spiral?
Posts: 3528 | From US | Registered: Apr 2007
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lymielauren28
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Member # 13742
posted
Well, because I was basically symptom free for almost three months, maybe a little longer.
Over the last two months little symptoms started to pop back up - now the little symptoms are turning into big ones.
I've been down this road before - getting much better only to crash and burn again - and again - and again. I'm trying very hard not to get discouraged...
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Lauren,
Yes, the diet Dr. Pepper could certainly have triggered this. From now on, it is especially important to avoid aspartame as if this was the actual trigger, it's likely that you will be more susceptible to it at future exposures - even in a cough drop or gum.
Links above on this subject are just the tip of the iceberg to problems with aspartame.
------
As for your cycle also making things worse, yes, that can make lyme symptoms worse and also, such hormone shifts and surges can lower the threshold for seizures in patients who have them. Some of the suggestions above will help, especially magnesium.
However, you may not have another seizure - especially now that aspartame is out of your life. Things should be better.
I hope you are doing better.
It may be a good idea to still go through all the things to consider and eliminate what can stress the nervous system and add the support measures.
Singleton's book, "The Lyme Disease Solution" discusses support for the endocrine system. That might help.
I hope you were able to talk to your LLMD. That is very important, even if you feel fine now.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Herbal teas brewed extra strong (a couple of tea bags in very little hot water, save concentrate in fridge) with a touch of stevia added can provide some nice flavors for a beverage.
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Doing better ya'll - thanks so much for the concern.
Yes Geneal, I am pulsing Flagyl. I do 750 mg 2-3 days a week.
Spoke with LLMD, who was concerned, but we talked about some different things that he felt may help. If it happens a again he wants me to do an MRI, which I will do.
Keebler - no more diet Dr. Pepper for me or anything else with aspartame!!
Bwillis - you're absolutely right. Remember, I still have a bad day every now and again and sometimes even a few in a row.
It's always easier to give advice rather than recieve it, isn't it my friend
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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