Hi everyone...I just got back from a neurological consult earlier...I was told that these odd episodes that I have been having might be petit mal seizures. I have had random seizures in the past, but this neuro is indicating that if my EEG is abnormal then I will go on meds.
For people who have had seizures, what meds did you take if any and how did they help you? Thanks in advance. Jess.
Posted by Keebler (Member # 12673) on :
- I am far too tired to phrase this as I would like best. My training in journalism still has be trying really hard - and knowing that others may be tender and my words may not ring the right tone -- but I have to set that aside so that you might consider some of the complications of seizures in those with lyme.
I just can edit this to read as would be best. Still, I hope you can at least consider all this and go to links I post that explain so much more.
Why assume that ANY RX is needed? Just because that is immediately where the neurologist goes? Not a good move. More exploration is required. Much more.
Now, it may well be that - in your case - an anti-seizure Rx would be of help. But it's too soon to jump there. Most anti-seizure Rx are very hard on the liver and many are not suited for someone who first needs to figure out the possible connections and make adjustments that could eliminate the problem without drugs.
If drugs are required, your LLMD should be first consulted.
Some Rx can make seizures worse, so you have to have the very best idea of the CAUSE first.
Also, even if the EEG is normal, that does not rule out seizures. Reasons explained later in other threads.
1. BEFORE you even consider any Rx for seizures, consult your LLMD.
2. Consider the strong possibility of elevated porphyrins as the trigger - BECAUSE you are not eating a regular diet and getting most of (if not all of) your nutrients from TPN right now.
You may need more carbohydrates to help keep the porphryin levels safe. Too high can trigger seizures. See Porphyria thread, especially the "secondary" post there.
3. Even with your IV TPN, you may be deficient in certain nutrients -- vitamins, protein, essential fatty acids, etc. Those with seizures made need more - or at least more specific good fats.
4. Sleep
5. Hypoglycemia
6. And vestibular involvement can contribute to seizures. You posted the other day that you got ill in a big box store. That points to many issues that can contribute to seizure:
inner / middle ear dysfunction, stress, etc. (which goes along with lyme and liver stress)
liver stress
adrenal dysfunction
chemical sensitivities
Since I've been given the taste of figuring out all this for myself, the following threads contain much of my personal research. It's all relevant, all of it.
And most neurologists will have no clue at all as to the intricacies of seizures for those with lyme.
TALK TO YOUR LLMD FIRST.
CONSIDER as first line of support:
FISH OIL
MAGNESIUM
TAURINE - as you are not eating solid food, be certain that your IV nutrients contain TAURINE. It's absence can cause seizures. Found mostly in meat, fish and eggs. Our bodies don't make enough and it MUST be in our diet or supplemented.
SPIRULINA (to help lower dangerous porphryins - detail in the Porphyria thread)
STEADY STREAM protein, fats, carbs (yes, carbs - but see the caveats in the porphryia thread).
links to follow. -
Posted by Keebler (Member # 12673) on :
- If you are taking ANY Rx or ANY Supplements, be sure to access for possibility that they may be triggering seizures. Especially GLUTAMINE. Why? See:
Identifying Environmental Illness and Mold Exposure in Patients with Persistent Lyme Disease.
Lisa L. Nagy, MD Video $15.
(She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the recent ILADS conference.
It's a great presentation to see. The DVD can be ordered. Great detail about toxicity issues also here:
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posted by Keebler (Member # 12673) on :
- All this may be a heavy load for your LLMD. You may do well to also consult a LL ND. Your LLMD may be able to suggest someone with whom he/she has a good working relationship. Otherwise:
When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees . . . . -
Posted by Keebler (Member # 12673) on :
- Forgot to add:
Avoid ALL FLUORESCENT LIGHTS. If you have energy-saving bulbs, replace them with the regular incandescent types.
THIS is absolutely vital. I cannot stress enough the importance of this move. I could explain more but am just so out of steam. Please take my word for this.
BE TOLD IN ADVANCE of FLASH PHOTOS so you can either brace yourself - or - turn away and also close eyes and turn away when you are not in the frame. -
Posted by derk diggler (Member # 31903) on :
what do you mean by odd episodes could you elaborate
Posted by jessicabooklover (Member # 39427) on :
Derk-my muscles get rigid and I get very dizzy and my tongue sometimes twitches and then I get this odd kind of head tremor. It's disconcerting as hell and it happens about once a week lately. Jess.